Micro Preemie Twins: The Story of Holland & Eden

A Little Snow...Finally!

2012-01-19T14:11:00.002-05:00

The Highlight of 2011

2012-01-02T21:35:00.001-05:00

2011 was a big year for us. A good year.

So many things unexpectedly fell into place, making a dream that seemed a remote possibility become reality.

We moved into a new home.

Not just any home mind you, but a home that somehow meets all of our major criteria, and is ALREADY accessible for Eden. It's a spacious ranch, with extra-wide doorways and hallways, no step-up or downs to any room, and a ramp in the garage so Eden can drive her power chair into the house with room to park it. No more getting ready for school in the cold garage with a frozen lumpy seat (her powerchair has a gel cushion)!

So we found a really great house that immediately felt like home - even before we were fully moved in. It is nothing extravagant, but is very functional, practical, and modest - like us.

Moving is tricky business. You can check out the house, and make sure it is what you are looking for, but there are a lot of things that you can't fully know until you make the move. I drove through the neighborhood numerous times, and visited the school and met with the principal, but until you make the move it's hard to really know how things will mesh with new neighbors and a new school for your kids. Having children with special needs makes these kinds of things even trickier to navigate. You learn to expect some give and take. You hope for neighbors and teachers, school staff, kids, and other parents who will show true kindness and acceptance of your kids, but you also prepare yourself for a full range of responses and get set to advocate and educate as necessary - hopefully in a positive way, but always on high alert.

We got lucky. Our neighbors are great and have been very welcoming and kind to our family. The school is wonderful - overall climate has been very accepting. The principal is a compassionate person who listens and is a proactive problem-solver. The girls teacher is very much a "Professional." She knows her stuff, and is willing to go the extra mile to make sure that her students learn. She zeroed right in on H and E's strengths and weaknesses, and has stayed in communication with us regarding strategies that seem to be working or not working, and what things we need to be putting in some extra time on at home. The girls have made friends - we have already been to two birthday parties and have had a couple of "play-dates." The parents have also been very warm and accepting - several have approached me to tell me how much their kid loves Holland and Eden.

All in all, I couldn't ask for better.

Christmas in Review

2011-12-30T21:22:00.001-05:00

Prematurity Awareness

2011-11-17T15:24:00.002-05:00

November 17 is Prematurity Awareness Day, AND the day that we celebrate 7 years since my amazing girls came home to be with their family after spending the first 110 days of their lives in the Neonatal Intensive Care Unit. There is not a day that goes by that I am not reminded of all that they endured to survive, and the lingering effects of their much too early birth. For better or worse, we have learned so much on this journey and are forever grateful to have these sweet and wonderful kids in our lives.

Happy Homecoming Day to my loves!

We've come such a long way...

Tonsils and Adenoids - Gone

2011-11-14T12:03:00.004-05:00

First of all, I really want to say a giant THANK YOU for all of your tonsil and adenoid stories on my previous post. They were really, really helpful in letting me relax a bit and feel better about our decision to go ahead with the surgery for Eden.

Eden's T&A surgery was last Monday, Nov 7th, with a hospital arrival time of 1:45pm. This was our first shot at an afternoon surgery, and it definitely wasn't pleasant keeping her without any food or drink after 6:45am. Morning surgeries are definitely the way to go if you have a choice!

She and Holland both got a little weepy and emotional that morning as Holland was getting ready for school. They were feeling nervous, worried, and sad that they were going to "miss" each other, and we did have some tears. Once Holland was off, they each perked up and were fine until the drive to the hospital. Then Eden started to get all teary and emotional again, and I overheard her telling her doll "Pinkalicious" that she was afraid that she was going to die(!). That freaked me out a little - but I didn't show it. I just gave her a lot of reassurance that everything was going to be fine and it was no big deal - at the same time reassuring myself that this would be the case.

Once we were at the hospital and she had met the team of doctors she seemed to be feeling okay and didn't cry at all as they took her back for the surgery. We asked to be brought back to recovery ASAP because we were worried about how she would be waking up without her hearing (cochlear implant). She wouldn't be able to hear what they were saying, and we didn't want her to be afraid.

The surgeon was unable to do a "typical" T&A with Eden because the use of cautery (or anything electro/magnetic) during surgery can interfere with the internal component of her cochlear implant. Instead, they did what they called a "completely cold" procedure and we chose an ENT who has experience specifically doing the T&A on kids with cochlear implants. My understanding is that with this type of procedure there in increased risk of bleeding during surgery, but maybe less pain in long-term recovery. We asked to be kept overnight for observation (to watch for bleeding and to keep her hydrated), and they agreed to keep her.

The surgery itself took less than an hour, and we were brought back right away. The hour following was by FAR the worst part of the whole experience. She had a very difficult time coming out of the anesthesia, felt sick to her stomach, and was literally writhing in pain. At the same time she was figuring out that it was painful to swallow, breathe, and talk. It was awful to see and brought back a whole flood of memories and emotions. Once we finally got the right amount of pain medication on board and I picked her up and cuddled with her in the rocking chair, she was able to relax.

Four hours later they wanted to wake her up and start her on oral pain meds so she could "prove she could take them." Since we were staying overnight on an IV, I insisted that that first dose post-recovery be given in her IV, and that she be allowed to sleep. (This is where all of our NICU/hospital/surgery veteran experience proves handy;)) We agreed to wake her after a good 8 hour stretch of sleep to start the oral meds. This was the 2nd worst part of the experience. I got them in her, but it wasn't fun. Luckily it got easier each time. Even though the medicine was disgusting and she hated it, we were at least able to reason with her (and have a tasty drink handy to help her wash it down).

This surgery was done at our local University hospital, rather than at the hospital where we spent plenty of time in the NICU and pediatric unit, so it was a bit of a foreign environment. We had to share a room rather than having our own space. As (bad) luck would have it, the girl in the bed next to Eden was moved out at 10:00 pm. At approximately 2am a parade of people began coming in the clean the room, move furniture around, and bring in a new patient. The best part was when I woke up to see them actually taking off the foot of Eden's bed and PUTTING IT ON THE BED so they could move the other bed out of the room. Insane. I seriously think someone should do a Saturday Night Live skit about what it is like to "sleep" overnight in the hospital. It should start with a doctor telling a patient to make sure they get enough rest so they are able to heal..... I got a combined total of about 2 hours of seriously disrupted sleep. I finally just resigned myself to staying awake because it was less painful. Lucky for us (and for them), Eden is deaf and wasn't bothered at all by the noise. Between that, and the fact that it was just one night, I was able to find the humor in the situation and let it go.

At 5am the morning following surgery Eden woke up saying she was hungry and proceeded to eat a whole cup of vanilla hospital ice cream before falling back asleep. By 8:30am she was asking for scrambled eggs and french toast. One of my biggest concerns going into this was regarding weight loss and regression in eating, and I am happy to report that this really has not been a problem.

Another thing I stressed about was the expected "voice change." Eden has always had a really soft voice, and I was concerned that any additional muscle weakness resulting from the surgery would make her voice even softer and more difficult to understand. This hasn't been the case. Her voice is definitely different...maybe a little more nasally and a little bit "funny" sounding, but she is still intelligible and maybe even a little louder?? It will be interesting to see how this goes as she heals.

On the pain scale with the faces, Eden was rating her pain at 10 the first day. We were down to 8 by day 2 (between medicine doses), 4 by day 3, and 1 or 2 by day 4. At day 5 she told us she was a 0 and we weaned her off of the Lortab (vicodin) and onto straight Tylenol. Yesterday we increased the time span between doses to 6-8 hours, and quit waking her up at night for meds.

During the very first night I could hear an improvement in Eden's breathing during sleep...even with all of the swelling and gunkiness in her throat. The past couple of nights she is SO silent when she sleeps that we have to get really close to her to make sure she is still breathing! This alone is a great relief. We are very hopeful that this winter will bring fewer throat infections, less sickness overall, and an easier recovery when she does get sick. Only time will tell.

Today Eden went back to school. It was so nice this morning to walk her in and to hear all of her little friends exclaiming, "Eden's back!" They all smiled, waved, said hello, and a few came up to give her high fives. The best part was the huge smile on her face when she realized that she had been missed, and that everyone was happy she was back!

Sweet Cupcake and Pretty Kitty

2011-10-31T22:53:00.001-04:00

Happy Halloween!!!!!!!!!!!!!

My Darling Daughters

2011-10-10T17:21:00.001-04:00

School, Solutions, Schedules, and Surgery

2011-09-23T12:03:00.007-04:00

The girls are finishing their third week of first grade today, and I am happy to report that at this point I am feeling optimistic about what the rest of the year will bring. They are in the same class at a new school, with a new teacher and principal. Eden was able to keep the same aide (this is their fourth year together) and that has definitely helped to make the transition go much more smoothly because Ms. Jess already knows Eden really well and doesn't need any training on equipment/transfers, etc.

I am so pleased with the overall positive vibe that I get from the school. So far, they have been very open to working with us, as well as kind, and most importantly ***solution-focused***. They seem to embrace the whole concept of inclusion (rather than just tolerating it). I don't think I will have to put up a fight this year over things like "I don't want a stranger taking my kid to the bathroom," "I don't want my kids to leave school 15 minutes before the end of the day," "I don't want my daughter to ride the bus to the field trip by herself," or "I don't want Eden always sitting in the back or on the sidelines." So far, the staff seems thoughtful and proactive in working to include Eden in all of their activities. And, even better, their teacher seems very interested in getting to know...and teaching...ALL of her students.

That said, we are still making adjustments to the plan and working to get all of the right equipment and support in place. It looks like we finally have a desk that works with E's wheelchair. The desks with the storage cubby under them do not seem to work because they are too high and difficult for her to get things in and out of. We are trying to figure out a good system for storing her books and supplies where she can get to them independently. We are also looking for a new floor sitting solution. She has used a straddle-sitter the past 3 years and it worked well, but this year E is finding it really uncomfortable on her legs, as well as "embarrassing", and difficult to get in and out of. She has been sitting independently on the floor some of the time, but still prefers to w-sit which isn't good for her hips. We are hoping to get ahold of another Child Rite chair as this works well at home.

I talked to the team about Eden's progress with the walker this summer, and our hope that she will use it at school this year. We came up with some good ideas/times that she will practice walking. I took her walker in to gym yesterday, and she spent the first 5-10 minutes walking laps across the gym. She did SO WELL, and it was clear that she was showing off! Transporting the walker back and forth everyday will be a challenge, so if we could find one cheap or used it would be helpful. She is using a size 2 Kaye Products walker. If anyone happens to have one lying around that they are not using please let me know!!

One of my major goals for the year is to get assistive technology in place to help Eden with writing. She is able to write, can form all of her letters and draw simple pictures, but it certainly not easy for her. Her letters are large and can be difficult to read. Ideally we are hoping to get an iPad for the classroom for assignments that require writing. This is going to be a challenge - at least definitely a learning curve, for all involved, (namely ME) but Eden is very adept with technology and I foresee that she will eventually do all of her written work on an iPad or computer so I am willing to learn. I hope to get the ball rolling on this very soon (which means figuring out the red tape and what hoops I need to jump through asap).

The schedule has been a major adjustment. The girls went to pm preschool for 2 years, and last year were in pm kindergarten, so have gone to school from about 12-4 for the past 3 years. They didn't have to get up super early, and we were able to spend adequate time feeding them. Now...they have to get up at 7am to have time to get up, dressed, potty, teeth, hair, breakfast, shoes, potty again, and out the door by 8:15. The morning's are a hustle, but we're managing. Another, more pressing challenge, is the fact that they are in school all day now, and "eat" lunch at school... They have to stay in the lunch room for at least 10 minutes before they can be dismissed for recess... Anyone who knows anything about my kids and how they "eat" can only imagine how well this is going... Let's just suffice it to say that we still need to work on it.

Eden was scheduled to have her tonsils and adenoids removed (today actually), but we had to reschedule because she has been congested with a bit of a sore throat and minor cough this week (the usual back-to-school virus). Her sickness is pretty mild, but we really need her to be in top form going into the surgery. We've rescheduled for November 7th. I am super nervous and stressed about it. In a way, it would have been nice to get it over with so I wouldn't have to keep imagining terrible scenarios over and over in my head. Eden has very large tonsils (they almost touch each other). We contemplated having them taken out when she was 3, but at that point we weren't really sure whether they were contributing to her feeding difficulties and didn't want to put her through an unnecessary surgery without knowing it would help. Last winter the girls had strep a few times and it was especially difficult for Eden to recover. I am also convinced now that at least part of her difficulties with swallowing and snoring (especially when she is sick), restless sleep, and morning grogginess, are due to her large tonsils. So I do think it's best to get them out before we are full on into another cold/flu season, but I am still incredibly nervous and worried about how she will recover... I have heard some negative, terrible stories that I am having a hard time shaking... Will welcome any positive outcome tonsillectomy stories to help me get through the next month!

A Friend

2011-09-16T19:08:00.003-04:00

Eden got this letter from a first grade girl that she met on the playground yesterday. She was literally beaming when I picked her up from school. Last night she wrote a letter back that said, "To Abby, Yes I will, Love Eden!" Inside she drew a picture of a flower.

So thankful for parents who raise sweet kids.

And They're Off!

2011-09-06T09:07:00.001-04:00

Holland and Eden's first day of 1st grade...I've got a good feeling...

Play Ball!!

2011-08-27T21:27:00.002-04:00

Look what HOLLAND can do!

2011-08-15T13:17:00.005-04:00

It's easy, on this blog, to focus more on Eden's progress and accomplishments, and to sometimes gloss over what Holland can do. It's a blog. I only update a couple of times a month, and generally highlight only the most monumental events in our lives. Eden's disability is obviously more severe, and everything major milestone she reaches is celebrated as spectacular - which it is! She has to work SO hard to achieve the things that come so easily for most of us, and we rejoice so much in Eden's accomplishments.

But I don't want to overlook the wonderful and amazing things that Holland is learning and accomplishing as well. Holland has a disability too. She was diagnosed with mild hypotonic cerebral palsy when she was two years old and just learning to walk. She also has a mild left hemiplegia - meaning that the left side of her body is more affected and has developed more slowly than her right. She has made really great progress physically over the past few years, and is able to run, jump, climb, and generally do most of what other kids her age can do. It is easy for us to forget that Holland even has CP when it's just the four of us, because we have only Eden to compare her to. The only time it really becomes apparent to us is when we see her around her peers, particularly when engaging in a physical activity.

Holland has a hard time keeping up with other kids her age. When she runs, she still pumps with her right hand fisted, and with her left hand open out in space. We have to remind her to "use your left hand!!" She does a great job of climbing up the play structures at the playground, but has a hard time getting herself back down. When playing a drum beat, she can move her right hand about twice as fast as she can her left. She still has a hard time dressing and undressing herself, let alone her dolls and Barbies. She gets tired pretty easily, and at events that require a lot of walking, will still ask to be carried at least part of the time. Writing is also a challenge - she is able to write and draw nicely, but tires quickly and gives up easily. Attention and anxiety are also issues that we deal with - nothing severe enough to warrant formal diagnosis at this point, but challenges nonetheless.

I say all of that just to highlight the fact that Holland's accomplishments are a BIG DEAL to us too! She might not have to work quite as hard as Eden to do simple tasks, but she still has to work a lot harder than your average kid.

This summer, like last, Holland did two weeks of gymnastics camp and two weeks of art camp while Eden was at CLC. I was particularly impressed with how well she did at gymnastics this year. She was able to run completely across the gym, on a squishy padded floor, without falling! She was able to jump really high with BOTH feet on the trampoline, without falling! She was able to hold herself up longer on the bars! She was able to hold herself up on the rope swing! And probably the most notable difference was that this year she could walk the length of the balance beam without falling - she couldn't do this at ALL last year!!! :-)

Check it out!!

She also brought home some really cool art projects, and seemed to do a good job of making friends.

An elephant made out of glitter clay...

A bird, in his natural habitat, made from sand clay...

And a pencil sketch of her family...

Way to go Holland! We are so proud of you and think you are amazing too!

Stepping It Up!!

2011-08-04T21:51:00.002-04:00

Just 3 weeks into her summer camp program at CLC, Eden walked out of her classroom at the end of the day pushing a Kaye walker with NO support. I was stunned, amazed, and oh so proud. I still am. It takes my breath away.

Her progress these past 4 weeks has truly exceeded all of our expectations. Walking with this Kaye walker was a long term goal in the back of my mind...something I had hoped we would work toward into her teen years. To see her doing it now, at the age of 7, is more than I had dared to hope.

I am so thankful to the staff at CLC for their dedication to helping kids like Eden achieve their fullest potential. It truly is an amazing place.

They have asked us not to take pictures or videos at the school, so we made this at the hotel tonight after dinner. Eden was excited to share, and said, "Are you going to post it to YouTube?" Then she said, "I am going to be very brave and smile for the video."

So here is Eden walking...very bravely, and with a smile.

Seven!!!!!!!

2011-08-02T22:39:00.010-04:00

Happy 7th Birthday to our beautiful girls! I cannot believe it has been seven years. It truly boggles my mind. Where has the time gone???

To celebrate we went on an overnight trip to Chicago and hit the American Girl Store. We also had dinner at the Cheesecake Factory, saw a surprise performance of the Pinkalicious Musical, and went to the top of the Willis Tower (formerly the Sears Tower - who knew?). Thank you to our wonderful family and friends who sent cards and birthday money to help make Holland and Eden's birthday wishes come true. It was all worth it to see their faces light up and to hear their squeals of excitement. It was so adorable to see Eden talking to her doll, showing her how to drive her power chair, and to see the look of pure joy on her face when people told her "Your doll looks just like you!" It made my heart so happy to hear Holland say with complete excitement, "This is the BEST day of MY LIFE!!!"

Holland reminded me today that I needed to put pictures on the blog and told me that I should write "This is the day that Holland and Eden got their very first American Girl Dolls." So here it is!

This is the day that Holland and Eden got their very first American Girl Dolls!

Sunshine

2011-07-14T21:32:00.005-04:00

Yes, we have done it. We closed on our new house on May 25th. The girls finished up kindergarten. We packed up 10 years and 2 kids and moved. We became landlords when a new family moved into our old house on July 1st. Then, on July 10th, with a garage still full of unpacked boxes, we packed again and headed out of town for another 4-week summer camp at the Conductive Learning Center for Eden. The house we stayed in last summer was not available, so we are at a hotel this time. It's definitely pricier, so we are planning to head home on the weekends to save money. This is good on the one hand, because I will be able to get a little more unpacking done at the new house, but bad on the other hand because we are doing So. Much. Packing.

Camp is going really, really great, and we are actually having a nice time. Holland is doing her own day camps over the next few weeks to keep her busy with something fun and productive to do. This week she did "Clay Everyday". The kids made sculptures out of sand clay, chocolate clay, fruit scented clay, and glitter clay. She has brought home some really great projects and is really excited about making a new friend. Next week she is going to a gymnastics camp (same as last year), and she is super-excited about that as well.

I have been hitting the gym with a vengeance, and it feels GREAT for both my body, and my spirit.

This year is definitely easier because we know where everything is and have been able to settle into a routine a lot more quickly. Eden is happier because she is in a class with older kids (she is the youngest). Last year she was with the 3-6 year old group. There was a "crier" in her class (he was very sweet, but had a hard time adjusting), and it made it a lot more stressful for Eden. She did well, but even now remembers last year as being really "loud." A lot of this has to do with the fact that she has one cochlear implant, and it is a lot harder for her to hear in environments with a lot of background noise. This year the kids are older (6-8 years, I'd guess), and the overall setting seems a lot more calm, quiet, and organized. Eden is enjoying the fact that it seems like "school" and she is learning at the same time she is "exercising." Her class theme this year is "Have you ever wondered?" The kids are learning unique facts about animals, science, and nature. She has been super excited to go to class every day, and has a lot of information to share at the end of each day. She is also working hard, with a LOT of practice standing and walking. Today she walked out of class with her walker, and it was the best I ever saw her walk.

We really miss the "cheese house," but the pool at the hotel has been a major hit...especially because I have been able to master my technique at taking both kids (both who are non-swimmers, and one who is a non-walker and precarious sitter) to the pool by myself safely. It takes a great deal of patience, planning, stamina, and confidence (I often have an audience), but we've got it down now, and it's a blast.

These girls of mine, they keep me on my toes, but they are so cute and funny and cool that they make everyday brighter.

Here's just one example of why...

Eden's school, CLC, is affiliated with the PETO institute in Hungary. Several of the conductors for the program come from Hungary to work at the school. Two of the Hungarian conductors are in the United States for the very first time this summer. I was telling Eden about this yesterday. The conversation went like this:

Billie: It must be interesting for them to visit the US for the first time. It is very different here than in Hungary.
Eden: Well, do they have a sun?
Billie: Yes, they share the same sun as us.
Eden: Do they have ground?
Billie: Yes, they have a ground.
Eden: Do they have green grass?
Billie: Yes, I am sure they have green grass.
Eden: Well, do they have green trees?
Billie: Yes, they have green trees.
Eden: Well then, what's different? It sounds the same to me!

Oh they make me laugh!!

Still Alive!

2011-07-07T00:09:00.002-04:00

Last Day of Kindergarten!

2011-06-16T17:48:00.006-04:00

Goodbye 2010-2011 school year! Can't say that I am sad to see you go...

Looking forward to SUMMER vacation, moving into our new house very soon (!), heading to Grand Rapids in July for another 4-week session of Conductive Education for Eden, and a fresh start at a new school for first grade in the fall!

Home Sweet New Home?!

2011-05-05T13:37:00.006-04:00

We found a new house!!!

Our current house has been on the market since July of last year and is just not going to sell for the price we need. Because of current market conditions, we would have to take a pretty significant loss, and we are not in the position financially to be able to do that. Recently, the opportunity to lease our house to a family who would like to rent for a couple of years, with the hope that they will then be in a better position to purchase, presented itself. Doing so would allow us to go ahead and purchase a new house that would be more suited to our needs before the girls start first grade.

I am not 100% comfortable with this...the idea of two mortgages is pretty daunting, particularly when thinking about all of the "what ifs." What if the renters don't make their payment, or leave us in a lurch??? Yikes. We really can't afford two houses.

When the offer first came up, I told them we needed some time to think about it. Then, just a couple of days later, we had a showing scheduled for our house. In the meantime, I had a house bookmarked online that I kept going back to. It had "disability features" listed as one of it's selling points, and I was intrigued as to what that meant. I had driven by the house a few time, and had driven John and my mom past. It looked good from the outside.

Somehow, the stars aligned...a new possible opportunity for leasing our house was on the table...a showing was scheduled on our house...we decided that we should go take a look at this other house. I told myself that I just wanted to an idea of what was out there. I was thinking along the lines of "what if someone made an offer on our house?" We didn't have any prospects in mind. I had been to look at several houses and hadn't really seen anything that would meet our needs. Even houses that looked to have good potential online would have numerous little *things* that wouldn't work for us. Mostly, the houses I was looking at were either too small, not laid out well, or had at least one or several *steps* making them less accessible. There were also issues with me (or John) not liking the neighborhood, not liking the yard, too much work needing to be put into it, etc, etc... I really hadn't had any luck finding something that I really felt would be *the one* so I wasn't too worried that our house wasn't selling.

So we went to look at this house. It was a Sunday, and we had to be out of our house for a showing, so John and the girls came with me for the first time. We knew shortly after entering that this was IT. It was the first house that I had been in that really felt like it could be our home.

It is 4 miles from our current home, in the same school district (good), but at a different elementary school (also good). We love the layout...all one floor with no steps at all. There is a ramp in the garage, and another to the back doorwall, making it wheelchair accessible. The doors and hallways are extra-wide, with pocket doors to the bedrooms and bathrooms. One of the bathrooms has a barrier free shower, with a built in bench seat, hand-rails, and two shower heads...one high and one low. All of that work already done!!! Almost too good to be true. On top of that, the kitchen was recently redone with all new cabinets and counter tops. I'm sold. I have to have it. This kind of house doesn't come along everyday.

We made an offer, and it was accepted. We met the family interested in leasing our current house, and they signed a 2-year lease. We are well into the process of obtaining a second mortgage. We are hoping to close by the end of May, spend the month of June packing and moving, and be completely moved out and moved in by July 1st.

This is such a huge, life-altering commitment and change. We can't help but be completely freaked out, stressed, and apprehensive. But at the same time we are also feeling really excited and hopeful. I have visions of Eden being able to go anywhere in the house, whenever she wants, independently. Being able to play with her toys in the playroom, go get in her bed at night, and never having to worry about the other kids running upstairs to play without her. As she gets older, I have visions of her using a walker to go to the bathroom and learning to transfer herself, independently. I see her as a teenager and young adult, being able to use the bench and rails in the shower to bathe herself, independently. This house will help us achieve those goals.

I feel sentimental about our current home. This is our first house and we have lived here for 10 years. It is our home. We have been through SO much here, having babies and raising them for almost 7 years. I will definitely be sad to leave. But I have such huge hopes and dreams for the new house. I feel like it is a place where we can watch our girls turn into big kids, then pre-teens, teenagers, and young adults, while we grow old together. These past 10 years have gone by so fast. In another 10 Holland and Eden will be 17...in high school, at the same age John and I were when we started dating. Another 10 years, and I am sure I will feel as sentimental about the new house and I do now about the old.

So here we go!!! Wish us luck as we make our way on a new adventure, a new house, a new home, and a new journey toward independence for Holland and Eden!

One Day at a Time

2011-04-28T23:44:00.003-04:00

Just one more day until Team Holland and Eden heads out for our 6th annual March for Babies! If you are interested in supporting our team and helping us reach our goal, now is the time to make your donations. Thank you so much for your support in our efforts over the years!

As soon as this big event is behind us, I will fill you in on the details of our recent major, exciting, life-changing news...

Before you ask...NO, I'm not pregnant.

Hoppy Easter!

2011-04-25T22:57:00.003-04:00

Marching for Babies

2011-04-14T14:24:00.005-04:00

It's that time of year again! In a little more than two weeks, Team Holland and Eden will once again be hitting the street to March for Babies.

I watched this video for the first time in a long time and was surprised at the emotion I felt looking at pictures of the girls in the NICU. Holland and Eden will turn 7 this summer, and in some ways I feel so far removed from that time in our lives. But, when I take the time to pause and reflect, I am instantly transported back there and I feel...lucky and strong. I cannot believe that we survived such an ordeal, and that we are now fairly emotionally intact and happy.

We have committed to doing the walk again this year as a celebration of our beautiful girls, with the continued hope that our donations will be put to good use, and someday fewer babies will be born too soon.

Please support Team Holland and Eden as we walk in our 6th March for Babies, and help us reach our goal!

Is It Spring Yet?

2011-04-01T19:08:00.000-04:00

I am sure that people get tired of reading about my sick kids, probably just as much as I get sick of writing about it, but here we are again.

Eden has been sick all week with a fever, sore throat, and severe congestion. It appears to be viral, seeing as how the strep test was negative and the antibiotics don't seem to be helping. She missed the whole week of school, and today is the first day that is finally feeling a little better. Just as she seems to be on the upswing, Holland caught it. She complained of a headache and sore throat yesterday morning, but didn't have a fever and was playing cheerfully, so I sent her to school. Bad call. They called me an hour later to pick her up. By the time I got her home her fever was up to 102.3 and she was miserable. So, it appears that we are looking at another 3-4 days of misery, assuming she has the same illness as Eden.

Have I mentioned that we are ready for Spring and a break in all this sickness we have had this winter??? I think that we have had a really bad cold/flu season this year, just based on the sheer number of serious illnesses we have had. However, my girls are growing up and getting stronger, and at least these yucky viruses don't put us in the hospital anymore. I am thankful that we aren't spending the whole winter inpatient!

There have been a few breaks between sicknesses, and some major developments that bear mentioning...

I became a brunette! Chances are that I will probably go back to blonde in the summer, but it's fun for a change of pace.

We went to a Pinkalicious cupcake social and saw Pinkalicious The Musical. We bought the soundtrack and it is a MAJOR hit at our house. I had those songs stuck in my head for weeks.

We did EuroPeds (see previous post).

Eden got a new manual wheelchair, a Zippie Zone...in pink of course. It took 6 months to complete the process, but it was fully covered between our private insurance and CSHC. We haven't had a whole lot of time to practice using it yet, but she is already pretty good at pushing and steering it. Our long-term goal is that she will continue to use her power chair when we are outdoors or for longer distances, but will use the manual chair in smaller settings (like at school). So far, we are happy with it. Eden sits well in it and it is pretty easy for her to maneuver. It puts her a eye-level with her peers, and while slightly tall for her now, will eventually be good for her learning to transfer (particularly to the potty) independently. I will post a more thorough review in the future when we have had more of a chance to use it.

Holland got a new bike and we have had a couple of nice days to ride it!

Both girls got new glasses! Eden picked out a pair of pink and purple Flexon frames, which we hope will be good because they are flexible and will not need as many adjustments as her old pair. They look beautiful on her, but the jury is still out on whether they will hold up for her. We shall see. Holland picked out a pair of chunky blue frames, that are very stylish and certainly make a bold statement...very her. I was honestly a little hesitant about them because I worried they were too heavy for her delicate features and would hide her face too much, but I decided to let her choose. She has always had definitely opinions on what she likes, mindless of what other people might think, and I really admire her for that. Now that I have had a week to get used to them, I really like them. I think they suit her and she gets a lot of compliments:-) Of course, they are both just so cute anyway...if I do say so myself.

Eden at EuroPeds!

2011-03-31T00:51:00.000-04:00

Eden did two weeks of intensive physical therapy at EuroPeds in Pontiac, MI, at the end of February. The timing worked out nicely because we all had the last week of Feb off for winter break, so she only ended up missing 4 days of school. We were supposed to go 5 days a week, 4 hours a day for two weeks, but had to miss the very first day because of a snow storm that dumped 10 inches of snow on us.

It was a serious break from our usual routine because I had to wake Eden up at the crack of dawn to feed her and get her out the door in time for an hour drive, and we had to be there at 9am. It was a sneak peak of what life might be like next year when the girls are in school full-time and have to leave at 8am every day (YIKES!). But we did it, and I was pretty proud of myself for getting her there on time...for the most part.

Overall I was very impressed with the program and the therapist that Eden worked with. She pushed her to work really hard, while still keeping her motivated and (mostly) happy. And Eden did work hard. She was doing one legged squats with weights on her legs. It was intense. I am sure if I did half of what she did I wouldn't be able to move the next day, but she is tougher than most of us and really didn't seem sore or over-tired at all. She also ate GREAT....like I have never seen her eat before.

It seemed a lot like she was an athlete with a personal trainer for the time we were there, and she made some nice gains in her overall strength and stability. I think she enjoyed it and felt a sense of personal accomplishment when it was finished. We are already looking forward to going back, but probably not until the same time next year when insurance will cover it again. In the meantime, we will continue with our once a week private PT at home, along with therapeutic riding (we started a new program in March) once a week, and hippotherapy once a week. We are also planning to attend another 4-week conductive education camp this summer.

Should be plenty to keep us busy.

Wordless Wednesday

2011-03-23T00:00:00.000-04:00

Flu Bug

2011-02-17T14:18:00.005-05:00

Holland is sick right now with our first case of Influenza. The FLU. It's one of those things, like RSV, that strikes fear in the heart of every micropreemie parent. She has had a flu shot every fall since she came home from the NICU, with 2 extra shots last year to help protect her from H1N1. Unfortunately, the shot can't protect us from every flu bug out there, so here we are.

She had a low-grade fever on Friday night, but it came right down with Motrin and didn't return on Saturday. I actually took her in to after-hours care, thinking I should make sure it wasn't another case of strep (we had that a couple of weeks ago), but it was so crowded with sickos that we ended up leaving without touching anything and without being seen. She was okay that night, and on Sunday during the day, with the exception of a really runny nose. On Sunday night the fever returned and she began to feel really, really crummy. I took her to the pediatrician on Monday morning and they diagnosed influenza. We have been managing okay during the day with Motrin, fluids, and lots of television, ipad, and video games.

Night time has been a lot more difficult. For three nights in a row she was up at least once an hour crying, moaning, and generally feeling miserable. She could not breathe through her nose, was coughing, and had all over aches and pains. She complains about a tummy ache and a yucky dry mouth and lips. A few times she actually called out, "Somebody help me!" :-( Last night, night 4, was the first that she (and I) got longer than an hour stretch of sleep at a time. She actually slept pretty good from 2am until 8am. So far today her fever has not returned and I am hopeful that we have turned a corner.

Through it all her lungs have seemed to remain remarkably clear, and at both checks at the doctor's office she was satting 99-100. Happy, happy, joy, joy. I will take 3 miserable night at home with clear lungs over ANY nights in the hospital on oxygen. So, today we remain over one year hospital-free, and it looks like we might have kicked the flu bug's butt at home. (I hope I am not speaking too soon...)

Holland will be out of school this whole week, and missed her kindergarten Valentine's Day party. Eden is amazingly still healthy. I am crossing all of my crossables that she will STAY that way and not catch this, because she is supposed to start 2 weeks of intensive physical therapy at EuroPeds on Monday. Her getting sick now will be a major setback in so many ways... We are so ready for spring!

Snow-Body like Us!

2011-02-10T14:51:00.000-05:00

The State of Affairs

2011-01-06T13:41:00.007-05:00

Happy New Year!!

Life is a crazy whirlwind around here, as usual, and I have not been able to find a whole lot of time for blogging. We had a great holiday despite the fact that at least one person in my household has been sick since Thanksgiving. It seems that Eden and I bore the brunt of it starting with congestion and coughs...the kind of cough that once it starts you can't stop coughing, so much that you start sweating and tears start flowing and you think you might hurl, but you don't. I had that kind of cough on Christmas day. In the midst of that we had a bout of stomach cramping and yuck-poo that lasted for at least a week and made the rounds through each member of the household. Then, just when we thought we were back on track we had another round of fevers and congestion for the New Year. John made it through the entire holiday relatively unscathed, but is in bed today with a nasty stomachache that appears to be something entirely different. I hope this is not an indication of how our entire winter is going to go because I am feeling pretty much done with being sick!

On the bright side (this is me, ever the optimist), WE MADE IT THROUGH THE ENTIRE YEAR OF 2010 WITH NO HOSPITAL STAYS!!!!!!!!!!!! Isn't that so great, amazing, and splendid??? Also worth
mentioning is the fact that in February Eden will be TWO YEARS hospital-free. It is clearly not that we haven't been sick. It is just that the girls are developing new, undamaged lung tissue and gaining trunk strength and control making it easier for them to cough and clear their lungs and maintain their oxygen saturation and not develop pneumonia. This makes me so happy.

2010 was a great year for us in other ways as well. These are some of our major accomplishments and experiences for the year (in no particular order):

* Eden learned to use the potty and is 100% pull-up free during the day.
* Holland learned to stay dry through the night.
* The girls started regular kindergarten in our neighborhood school.
* We moved to another city for 4 weeks so Eden could do conductive education.
* We went to an amusement park and the girls rode rides for the first time.
* We went camping.
* I fractured my rib after falling off my bike (ouch).
* We went to the beach more than once.
* Holland learned to swim independently wearing a life vest.
* Eden got a bike and learned to ride it.
* We made numerous home improvements and put our house on the market.
* Holland and Eden learned a ton. Both girls have started to read, and Eden's reading has especially skyrocketed. I bet she is at nearly a late-first grade level in both word reading and comprehension. This really makes my heart swell, because I love to read and I know how many doors a good book can open for anyone, but especially a kid who has physical limitations. You can go anywhere in a book!

All in all, 2010 was a great year for us. I was sad to see it go, and will remember it fondly.

There were, however, some major things I would have liked to see happen that didn't...mostly related to feeding and growth. We haven't made much progress at all on either front. Each girl grew 2 inches, putting H at 43 inches and E at 42. Eden gained a pound and a half, putting her at 31.5 pounds. Holland didn't gain any weight. Zero. She is still pushing 32 pounds.

I also would have liked to see Eden doing some independent standing, but maybe that was too lofty a goal. She is able to bear more weight on her legs while holding onto something, but progress is really slow in this department.

Maybe 2011 will be our year for physical growth - gain some weight and work toward Eden's independent standing. Those will be my goals for the New Year, along with selling our house and moving into a new one, and doing a couple more sessions of conductive ed (we are looking at going back in February and again for summer camp). Also, we will start looking into a bilateral cochlear implant. I think a second implant is the way to go and would really help Eden at school and in her future music career (lol), but I am so anxious about pulling the trigger in terms of another major surgery. So, I still have a lot of thought and research to put into it, but if we are going to do it I think this is the year.

That should keep us busy!

How about you? Got any plans?

Visit with the Big Man

2010-12-20T14:08:00.004-05:00

Holland asked Santa for Jessie and Woody from Toy Story 3. Eden asked for the Magic Rise Oven to use in her pink cupcake making factory. I bet they will get what they wish for. They have been really good girls this year!

And the Winner Is.....

2010-12-10T18:56:00.004-05:00

Thank you all so much for sharing your holiday traditions. I read them to the girls and they really enjoyed hearing about how different families celebrate:-)

So crazy that the very first commenter was the winner! Congratulations Stacy! I hope you enjoy your jewelry as much as I do. Lisa will be in contact with you with details on how to redeem your gift certificate.

And to everyone else...don't forget that you can still use the code preemie15 to get 15% of your jewelry order at Lisa Leonard Designs.

Here is a photo of the finished product (our tree), as well as some of Holland and Eden with their new ornaments from Bronner's (another one of our favorite traditions).

Holiday Spirit and a Giveaway!!

2010-12-03T22:31:00.011-05:00

Holland and Eden helped me put up our Christmas tree tonight. Holland was especially interested and helpful this year. She is usually the kid who loses interest in a project pretty quickly, so I was pleasantly surprised that she stuck with me until the last ornament was unwrapped and on the tree. It was very sweet. I must admit however, that it was a bit of a trial for me. I am kinda what you might call...hmmm...a perfectionist?..about the tree. I like everything a certain way and I generally methodically put it up according to my own agenda. John gave up on helping me a long time ago because...I guess, maybe...I can be a little controlling when it comes to the tree. So it was tough for me to relinquish my control and just enjoy letting the girls help. But I did it! I let them help and I didn't freak out. I might move one or two (or several) ornaments (that ended up piled on two branches of the tree) while they are asleep, but I am pretty happy with myself for not getting all stressed and anxious about it! I still have a couple of finishing touches to put on the tree this weekend, but overall I am quite relieved to have it mostly done with. Now for the outside lights...

The girls were pretty healthy over the Thanksgiving holiday and we had a nice weekend spending time with both sides of the family. We both feel very lucky to have such lovely families who adore our kids so much and shower them with love. Holland and Eden enjoy nothing more than spending time with their cousins - they like their aunts and uncles too, but nothing compares to cousins! Last Friday we spent the day at my parents' house doing our annual tradition of stringing popcorn and cranberries for our Christmas trees.

I have had a little bit of trouble this year getting into the holiday spirit. I have that familiar feeling of being overwhelmed by life's usual demands, then pile on all of the extras like family parties, a dish to pass, putting up the tree, decorating the house, and SHOPPING (which I haven't even begun), and it can get to be a little much. But, now the tree is up and I am headed to Bronners on Sunday with my sisters for our annual trip, which will also include dinner at Zhender's and a couple of stops at the outlet mall on our way home. I am sure to be feeling the Holiday Spirit in full force any day now.

I did get an early Christmas gift that has me feeling all warm and fuzzy. I love, love, love my new daisy chain bracelet from Lisa Leonard! When I saw this bracelet on her blog I knew I had to have it. Daisies are my very favorite, and in a way I consider them my "signature" flower. As a bonus, the bracelet is personalized with Holland and Eden's names and I have been wearing it pretty much every day since I got it. Lisa makes such beautiful jewelry. I have a couple of necklaces that I also wear often and I continue to get compliments on them ALL the time. With the holidays coming up, it's the perfect time to get yourself (or pass along a hint to your special someone) a new piece of Lisa's jewelry. She has graciously offered to give my blog readers 15% off their entire order if they use the code preemie15. In addition to that one of my lucky blog readers can win a $50 gift certificate from Lisa Leonard! For details on how to enter your name in the drawing...read on.

I really love, and have always loved, holiday traditions...even when it takes me some time to get in the mood. For me, the holidays are even sweeter now that I have a couple of little munchkins to share them with. I can snap myself out of the funkiest of moods just by thinking about life from their perspective. They continually teach me about appreciating the small things in life and they help me to enjoy the magic and beauty of every season.

To enter your name in a drawing for a $50 gift certificate to Lisa Leonard Designs, please leave a comment on this post. To have your name entered twice, tell me about your favorite holiday tradition, or if you aren't quite feeling the holiday spirit, tell me what lessons the little people in your life teach you. Be sure to leave your name and an email address where you can be reached if you win! I will close the comments at the end of the day on Wednesday and all names will be entered into a hat (or maybe a bowl). I will let Holland and/or Eden draw one name and will announce the winner by next Friday, Dec 10th! That will give the winner time to place an order before xmas:-)

Fabulous...and Not

2010-11-16T22:42:00.003-05:00

We had a really fabulous weekend. On Friday night we modeled in our Sixth Annual Fashionable Growth Fashion Show, helping to raise money for the NICU where Holland and Eden were born. We got to wear some really awesome clothes and spend time with some really great people, all while supporting a cause that is dear to our hearts.

On Saturday we spent some QT with one of our NICU friend's family. Their son also has Cerebral Palsy, and we had the great fortune of running into them at the CLC this past summer and getting to know them a little bit better. It really is amazing to be able to connect with other CP families. There's just that little extra immediate depth to the relationship because they are the ones who truly "get it."

Then, on Sunday we took the girls to the circus for the first time! We all really enjoyed the show - including the dogs in tutus, the high wire act, the flying trapeze, and the stunt people shot out of cannons. Very cool. I also personally enjoyed my $12 cotton candy. Except for the fact that it cost $12. Just before the show started we ran into one of our old school friends, there with his family, and went out to dinner with them after the show. Bonus!

It was a fabulous weekend. But today...not so much.

John and Eden were (are) mildly sick with some kind of stuffy nose thing for a few days last week. It started for Holland sometime over the weekend, but wasn't much of a concern until today. Today the wheezing started like we haven't heard for a looooong time (like October last year). I noticed it a little bit after school, but it didn't start to get really bad until dinner and progressed pretty quickly. I got ahold of the doctor and started her on some oral steroid before bed. She also had 2 albuterol treatments fairly close together. At bedtime she was overly tired and hopped up on albuterol, which always makes everything worse, and was pretty much sounding like a train wreck. We decided to put her to bed and see what happened (because sometimes once she relaxes and falls asleep her breathing gets better). After she was down I started mentally preparing for a trip to the ER, thinking it was pretty much inevitable. But I just went up and checked on her and she is sounding much better and breathing a lot more quietly and evenly. So for now we're on the fence. I'll probably keep checking her through the night and try to let her get a good night's rest, then take her to her pediatrician tomorrow. I just really, really, REALLY hope that we can make it till tomorrow.

The hospital does not sound fabulous. At all.

Conversation at Bedtime

2010-11-04T22:36:00.005-04:00

John and I were chatting with the girls tonight before bed, and the conversation went something like this...

Me:"You guys are so great, I am so lucky to have two such sweet girls. I love you to pieces!"
Eden: "Yeah, you thought you were only going to have one baby and you got two!"
Me: "That's right, surprise!"
Eden: "Well, you could have had three...what's that called when you have three?"
Me: "It's called triplets."
Holland: "Yeah, I say that a lot. I wish you had triplets because then I would have someone to play with when Eden won't play with me."
Eden: "Yeah, we should have two sisters and a brother!"
Me: (Chuckling) "Yeah, that would have been GREAT..." (With sincerity) "But we were lucky to have just twins, because not everybody gets a twin sister to play with at all."
Eden: "Well, I think you should have two sisters and a brother BABIES!" (implying that I should have triplets NOW.) Thinks for a minute..." But then you would have to get married again."
Me: (Laughing) "You are right about that! I would have to get married again if I wanted to have triplets!"
Daddy: "But would you want Mom to get married again?"
Eden: (adamantly) "NO!"
Daddy: "Why not?"
Eden: (looking at me) "Because you fell in love with HIM."
Me: "You are right. I am in love with him."
Both girls smile happily.
Me: "Why do you think I fell in love with him?"
Eden: "Because he is really cute."
Holland: "Because he is HOT."

ROFL. These girls of mine. They really make me laugh.

(Pics are from our trip to Michigan's Adventure on the girls' birthday. Just came across them again and think they are cute:))

Fancy Nancy and Pinkalicious!

2010-11-02T23:03:00.004-04:00

I think Papa might have eaten too many pink cupcakes too!

Ready to Trick-or-Treat!

Cousins Rock!

We had a FANTASTIC Halloween!

Everyone stayed healthy throughout the weekend festivities, and we had no major breakdowns or meltdowns (even though we pushed our luck with one party after another). I am pretty excited to report that Holland and Eden have even been eating quite a bit of their candy this year.

As I was tucking the girls in on Halloween night, Holland said to me, "Mom, this was my best day ever!" Sigh.

Mission accomplished.

Picture Perfect Fall

2010-10-21T12:33:00.004-04:00

Holland is a riot to search for a pumpkin with. She is always looking for Spookley (the Square Pumpkin, in case you were wondering). She wanted one that was as square as we could find...a certain size too...and kept changing her mind over and over. She did eventually find one that fit the bill.

Eden still has the same reaction to these goats that she did the very first time we visited this orchard:-) Love it!

And this is my prized pumpkin. We saved seeds from one of our pumpkins last year and planted them in our garden this spring. It was our first time venturing to grow pumpkins. We got three great ones, but I love this one particularly...warts and all!

For Sale, Fall Fun, and Fashion!

2010-10-14T13:14:00.010-04:00

Our house is for sale. It has been on the market for almost three months now, and we have had exactly two people come look at it. We're in that spot (familiar to many) where our house is not worth what we paid for it, and maybe not even what we owe on it, and it's difficult to compete with the short-sales and foreclosures in our area. So I am really thinking it's not going to happen any time soon.

We are lucky in that we can easily afford to keep paying our mortgage, and we are pretty comfortable in our house. We like the location, neighborhood, and schools, and would probably not even consider selling at this point except that we really want to get into a ranch style home that will be more accessible for Eden. Our current home is a colonial and all of the bedrooms are upstairs. So, not only is Eden not able to get to her room on her own, but also ALL of the toys in the house are on the main level, and it's difficult to keep things picked up! I would love, love, love to be able to put the girls' toys away in their bedrooms and still have them able to get to them. There will also be an issue in the future, when Eden is bigger and heavier, with picking her up and carrying her up and down the stairs.

Another issue is school and friends. The girls are in kindergarten now, and I had kinda hoped to keep them in the same school for the majority of their schooling. John and I both went to the same elementary school, middle and high school for our school careers and we are still friends with a lot of the same people that we grew up with. Kids in the early grades tend to be very accepting of differences, and I think it will be nice for Holland and Eden to stay with the same kids as they grow up. This is another reason I want to make the move sooner rather than later.

I've looked at lots and lots of houses, mostly online. There have been a couple that I have really had my eye on that sold, so I am trying not to look much anymore. I don't want to get my heart set on anything seeing as how the chances of us getting out of this house are pretty slim.

In the meantime we are staying put, and enjoying some fall fun. We've done a trip to the apple orchard, and are enjoying our warm apple cider, cinnamon donuts, and pumpkin spice lattes (well, that one is just me). I've put up a few decorations and we have picked out the girls' Halloween costumes. They are going to be Pinkalicious and Fancy Nancy. Should be super cute! They get to dress up for a school party and parade this year (something their preschool did not do) which is sure to be loads of fun. We are still anxiously awaiting the leaves actually falling off of the trees so we can rake and jump in our leaf piles, but alas this has not yet happened. Holland really thought it would happen on the first day of fall and has expressed her disappointment regularly since!

In health related news, both girls have had two fairly mild colds since school started and recovered without incident. That means we have been one year hospital-free with Holland, and a year and a half with Eden!! Yay! I am hopeful that they have possibly outgrown the prematurity-related-crappy-lungs phase of their lives. Only time will tell.

We haven't outgrown the prematurity-related we-hate-food or the gain-some-weight-already phases, but we continue to plug along with some good days and some bad days. Holland is currently 42 inches tall, and about 32 pounds. Eden is 41 inches tall and hits 32 pounds on a good day (more consistently about 31.5). We are definitely not getting anywhere quickly these days.

The girls got new lenses in their glasses in August. Holland's prescription is very similar to in past (R -4.75, L -10.5, with astigmatism in both), but Eden's eyes got waaaaay worse:-( Her first pair of glasses (about a year ago) were only about a -2 in each eye and she had very little interest in wearing them, claiming she didn't need them and they hurt her nose. Around April of this year her new eye doc confirmed that she wasn't seeing much better with or without them (about 20/40) so said she didn't have to wear them if she didn't want to. At her 6 month appointment we find out that she is much more nearsighted than she was before (R -5.25, L -6.75, with astigmatism in both) and should definitely be wearing glasses. Since getting the new glasses she wears them every day without complaint and even asks for them in the morning. So, she clearly needs them.

Gosh, I don't know what else I might have left out. Holland's allergies have been horrible this year in the spring and early fall so we have been playing around with her allergy meds a little bit...not sure anything really helped. We tried taking E off of her Prevacid but that seemed to be a failed attempt and she is back on the 15mg solutab. Maybe we'll try again in a couple of months.

The girlies got their hair cut short...really short for Holland, at her request. She asked for it to be cut "like a boy in the back and a girl in the front" and that's what she got. It pained me a little bit at the time, but I am determined NOT to let my own hair issues rub off on my girls, so I let her do what she wanted and now think it looks super-cute (though it is already needing a touch-up).

I am toying with the idea of another 4-week Conductive Education session with Eden in February...we'll have to see if I can work that out.

And finally (I should probably wrap up since this is getting long), our 6th Annual Fashionable Growth Fashion Show is coming up on November 12th, and our family will be modeling again for the 6th time! The fashion show and silent auction are our major fundraising event of the year, to raise money for the Family Advisory Board and NICU families at St. Joe, where our girls were born and spent the first 110 days of their lives. We were so lucky that our girls were born at such a great place, and will be forever grateful to the NICU staff for the exceptional care that they provided our girls and our family. If you are interested in attending please let me know!

Thankful Thursday

2010-10-07T14:27:00.003-04:00

Hooray!

2010-09-27T14:58:00.002-04:00

"The new pick up schedule has been approved by transportation and will be put into effect on Tuesday, September 27. The students will get on their bus at 3:30 p.m., with a departure from (school) around 3:35."

Kindergartners

2010-09-20T13:24:00.007-04:00

So, it's official. H and E are "kindergartners." Last week they had their first full week of school, Monday through Friday half-days in the afternoon. It appears to have been an easy transition for them. They are generally happy to go, and generally happy when they get home. Eden has the same one-on-one aide that she had in preschool, and that has certainly helped make everything simpler in terms of not having to train a new person on all of her equipment and cochlear implant, plus a familiar face and pair of hands in the classroom.

The only glitch has been with busing, and I haven't fully decided how big of a glitch it is. Originally, when I got the bus schedule, it said that the girls would be dropped off at home 25 minutes after school got out. That seemed like a long time, since we literally live 5 minutes from the school, so I called transportation to find out why. I turns out that there are 2 other students riding home after school and they will be dropping them off first, and H and E off last. Plus, there is an issue of the big buses coming in at the same time and there maybe being a wait to get the girls' bus out of there. So, after a reasonable explanation as to why the bus would be home so late, I was satisfied.

Then, on the first day, the girls got home 12 minutes before I was expecting them, and I was told that it was easier than they thought and they would probably be able to get them home at that time every day (12 minutes after school release). This seemed great at first...until the next day when Eden started crying after being dropped off and told me that she didn't have time to "climb on the stegosaurus" because she had to get on the bus. The same thing happened the next day, with both girls crying because they didn't have time to play.

After looking into it further I have discovered that they are putting the girls on the bus to come home 12 minutes before dismissal time. Currently, this translates into them missing most of recess because their teacher is bringing the kids out shortly before the end of the day...and just before H and E have to get on the bus. Once it becomes too cold (or too whatever else) for recess, they will be missing the last bit of class every day, whether it be a story or a game or last minute instructions or whatever...

I figured out that missing 12 minutes of kindergarten a day translates into missing 1 hour of kindergarten a week, which translates into missing approximately 12 days of school a year right off the bat, in addition to whatever time them will have to miss for illnesses and/or appointments. It just doesn't seem right to me, and I am puzzled as to why anyone thinks it is a good idea. I guarantee that no one would find it acceptable for me to bring them to school 12 minutes late every day.

My kids should be in school the same amount of time as all of the kindergartners. They should be doing the same activities as the other kids. I don't want them to be singled out. I really only want for them to have access to the same opportunities as all the other kids, and to be treated with the same kindness and consideration.

Because they are kids. Just like the other kids.

Eating Worms

2010-09-06T22:29:00.003-04:00

What's worse? Eating worms, or the idea of going back to work tomorrow? Hmmmm. Tough question.

"I Wish I Could Walk"

2010-08-22T16:58:00.003-04:00

I knew the day would come, and now it has. John and I have had many heartfelt talks about how we will handle it. What will we say? We have the challenge of trying to strike a balance between acknowledging her pain and the fact that life hasn't exactly handed Eden the easiest set of circumstances, but also remaining positive and helping her to realize all of her wonderful attributes and pointing out the many things that she does well.

We have always talked frankly to her about her disabilities. She knows, as well as a 6-year-old can, that she has CP and that she is deaf, and that these are a result of her being born way too early. We have always involved her in equipment decisions and have talked about the importance of stretching, PT, and exercise. She has always been pretty upbeat and excited about trouble-shooting new activities to see how she can participate. And up until now, she has always just been pretty matter-of-fact about all of it.

I think that the Conductive Education summer camp really stirred up some realizations and got her thinking about it a lot more. I don't know if she went into it thinking that she was going to learn to walk while she was there (which she did not), or if it had to do more with Holland being able to do gymnastics camp (which Eden can not), or if it was just being around so many other kids with various levels of disability (some with more limited ability than her), that brought on a greater or deeper understanding of her own limitations.

Whatever it was, there were a couple of occasions during the camp that she mentioned that she wished she could walk so she could go to camp with Holland. Since we have been home she has mentioned it a couple of times as well. "I wish I could walk."

As much as I tried to prepare myself for these words, I gotta say that each time it still feels a little bit like a punch in the gut. It kinda takes my breath away and breaks my heart a little bit more.

I still feel tongue-tied and a little bit unsure of myself and the best way to handle it. What should I say? What do I say?

I generally say something along the lines of, "Oh Honey, I wish walking wasn't so hard for you too. But you know, everybody has different things that they are good at. You are very lucky because you are a kind and smart girl, with a family who loves you very much just the way you are. You work really hard and you are able to do so many things. You can see. You can hear with your cochlear implant. You can talk and eat. You can crawl all around the house and are a great driver in your power chair. You have a great imagination when you play and you already know how to read and you haven't even started kindergarten yet! You are an amazing little girl who can do so many things. So, let's just keep working on your walking and with practice I am sure it will get better and better. But even if you never walk, I will always love you exactly the way you are."

Sometimes she smiles at me, gives me a hug, and says, "I love you too Mom." Other times she gets a little sad and teary, and gets really quiet for a while.

Every day I just hope that I am doing a good enough job at this.

Happy 6th Birthday H-Bomb and Edielicious!

2010-07-31T08:54:00.000-04:00

Details to follow soon! We are heading home this Friday!

Points of Interest

2010-07-26T21:19:00.004-04:00

We now lovingly refer to the house we are staying in as "The Cheese House." The house is very unique in style, particularly when compared to other houses on the street. It is square and kind of a yellowish-green color, with a flat roof and brown shutters. After seeing the house for the first time, Eden said, "I think it looks like cheese. It's a cheesy house. When we come back I think I am going to cut it up and eat it!" She cracks us up.

Holland has a rash around her mouth. It looks like eczema. My assumption is that she is allergic to something, but we can't seem to pinpoint what it is...especially because nothing in her diet has really changed and it started before we came out to Grand Rapids. I have developed and tested several hypotheses, but every time I think I have it figured out and it's improving, she wakes up with it looking terrible again out of the blue.

Eden goes swimming with her CE class on Mondays. Now that she has a new cochlear implant processor we decided to play around with her back-up (old) processor to see if we could devise something that would allow her to hear while swimming. So we rigged up a way to keep it on her ponytail with a plastic baggie over it - and it works! It's really nice bc her conductor gives a lot of instruction while we are at the pool, and Eden can actually follow along. It is always a source of frustration for us when she can't hear in the water.

I've been noticing that Holland is really on her toes a lot these past few weeks - literally. I thought it was getting better for a long time, but now it seems to be quite a lot worse. Her feet have grown quite a bit lately and her old shoe inserts are getting small. We just got her a new pair of PollyWogs and will have to do some shoe shopping and see if a better fit helps the situation. She does not have any muscle tightness related to her CP. This seems to be more idiopathic toe walking - maybe some sort of sensory or proprioceptive thing. She'll come down if we remind her, but is usually back up within seconds. We've tried to avoid any more restrictive bracing, but I wonder if we might have to explore it further down the road.

Eden cried last week when we went home for the weekend. She didn't want to leave the cheese house. She says that this house is better for her because it is close to her school, she can get to every room by herself, the bathroom is by her room, and her bedroom is pink. I think the pink bedroom is the real clincher for her. We put our real house up for sale before we left. No one has looked at it yet. But someday I hope we will be able to buy a new house that meets all of Eden's criteria.

Holland is really loving her summer camps. This week she is back at gym camp. It's at a place with a huge gymnastics area...soft squishy floor with built in trampolines, ropes and bars and rings to swing from, foam pits, etc. There are only a handful of kids there each day so she pretty much has free rein to do what she wants and she looooooves that! The "nature" camps at the Meijer Gardens are great too - more kids and more structured - but Holland is a true nature lover so she really enjoys that as well. She calls herself a "collector girl" and wants to collect nature everywhere we go. She especially enjoys collecting rocks, sticks, and pine cones, and on her first day of "nature camp" she came home with a handful of rocks and a note that said she enjoyed collecting rocks on their nature walk:-) She gave one of her rocks to Eden - one with a pale pink tinge, and Eden calls it her "lucky rock."

Eden loves to eat hard boiled egg whites and mushrooms from a can. She loves the texture and taste of those foods and will happily chow down on them as snacks. Holland can't stand either one. She actually won't even try them because the texture freaks her out. If she accidentally gets a mushroom in her mouth when we are eating pizza she starts gagging! It's crazy how different these girls are!

We get a free membership to the gym next door to Eden's school while we are here in Grand Rapids. What a major perk! I have been working out several times a week for the past couple of weeks and it feels GREAT. I used to work out regularly before the girls were born, but hadn't been to the gym since - until now. I had forgotten how good it feels. Now I wish I could figure out a way to incorporate it back into my regular life. I need to have a strong back and body, and good endurance, to be able to help Eden. She's not getting any smaller.

We met another set of preemie twins while visiting Holland, MI on Saturday (our 12th wedding anniversary). A family from California came up and introduced themselves to us. It turned out that their twins were born at 27 weeks. One of them suffered a grade III/IV brain bleed at birth and now has mild cerebral palsy. They were beautiful grown-up girls celebrating their 18th birthday! One of them keeps a blog called Teen Cerebral Palsy that is quite informative and a great resource for other teens with CP. I was glad that they took the time to stop and chat with us.

My babies are going to be SIX in 5 days. Un-frickin-believable. I don't feel sad around their birthday anymore. I mean I might if I just sat and allowed myself to, but for the most part we are so busy that I don't have the time. Plus it's hard to be sad for long when I have two lovely girls so full of life and vigor anxiously counting down the days. They are so excited this year and I am just going to try to enjoy all of that excitement with them. We are going to an amusement park and are going to have a crazy fun-filled day. I know they will enjoy every minute of it. They always do.

The Lowdown on CE

2010-07-19T16:52:00.007-04:00

So here we are!

Eden is attending the Conductive Learning Center in Grand Rapids, Michigan. CLC is on the other side of the state for us...about a 2 hour drive. I had heard about the program years ago and kind of wrote it off as much too expensive and inconvenient to really be a possibility. I made a lot of excuses about why it was not an option, and I think they were valid excuses. I did not think that Eden would have been able to handle the stress and work load when she was younger, and I was afraid that putting too much pressure on her would have a negative impact on her body as well as on her spirit. I also worried that I would not be able to handle being separated from Holland and John for such a long period of time, and couldn't quite get to a place where I could justify the time and money commitment without knowing how much (if any) progress Eden would make and if it would be a fair trade off for how it would impact my family. It really just didn't seem fair to anyone at the time, so I never pursued it.

Then, several months ago a parent on a yahoo group that I belong to mentioned that she had a walker to give away. It was a walker that I thought might work for Eden in the long term, and she lives in my area, so I scheduled a date to pick it up at her home. I talked to this mom on the phone, then had a long visit at her house. Her 7-year-old daughter attended a 4-week session at CLC last October and she raved about how great the program was and really encouraged me to check it out. I started researching it again and became really motivated to learn more.

This time things really started to fall into place and I thought of it as a very real possibility. I have the summer off work, so I wouldn't have to take any time off. John's employer agreed to let him work remotely so he could come too. An online acquaintance offered up some great suggestions for summer camp options for Holland. The director of the program put us in touch with another family who offered to let us rent their house for the summer. We made a visit to the program for an assessment, and we were impressed by what we saw. Eden has made tons of progress over the past years in terms of her cognitive and language development. So much so, that I was sure she would be motivated and would want to do it. She is also at a great place physically, where I felt like she could handle the work load without being completely exhausted and losing too much weight. Plus, developmentally she is at a point where she is able to crawl and get around, and is really wanting to pull up to kneeling and bear more weight on her legs for walking.

So with much discussion, and a great deal of courage, we decided to go for it.

We are now two weeks in to a four week summer camp session. She is attending Monday through Friday from 9am till 2pm. And we are loving it. From my perspective, as a parent and not an expert in conductive learning, the gist of the program seems to be that by doing certain movements over and over, kids with CP can gain functional skills. A lot of the activities they do are similar to what Eden has been working on for years with her physical therapist. But, rather than working on these skills for 1-3 hours per week, she is working 5 days a week, 5 hours a day. They put a lot of focus on getting her to take responsibility for her own movement, to pay attention to her body and what she is trying to do. They have some unique equipment (wooden plinths, ladder back chairs, parallel bars and PVC pipes, etc) that they use to assist her in gaining certain skills. They sing songs, read stories, and incorporate a theme into each session (the theme for Eden's camp is Pirates), but everything they do is actively targeted at improving each child's physical functional abilities and maximizing their potential.

It's pretty strenuous. Every child is expected to do the MOST that they can possibly do. I got snapped at today because I picked Eden up to take her to the potty. She is supposed to do as MUCH of the work as possible in getting herself to the potty...which means that they bring the potty to her and she has to stand up to help get her pants down then help lower herself independently to the potty. When she is finished she has to pull herself up to standing, to help pull her pants up, and walk back to where she needs to be and get herself into the right position to continue working with the class. Whew.

I was not expecting any miracles. I knew that a four-week Conductive Education summer camp was not going to make Eden walk. I must admit that deep down in the recesses of my being, I kinda wished it, but the ever-present logical part of my brain was always there to give me a reality-check. I am a little bit cursed with an overabundance of logic and skepticism. It's one of my many flaws.

So we went into it hoping that it would be a nice change of scenery, would give us some good ideas on how to change things up a bit, and would hopefully be a great adventure. And that is exactly what it is turning out to be.

I am learning a lot that I will definitely be incorporating into our everyday life. Eden is making really good progress, and I have seen some amazing results from her hard work and persistence. She is not walking. She is not really even standing and pushing a walker as well as I had hoped she would at this point. But...today during the line program she was able to keep her legs straight while lying on her back while she swung a ball up and down and from right to left with her arms. It brought tears to my eyes (I actually wanted to bawl but there were other people there). She couldn't do that last week. And yesterday her stepping out to meet me in the hall was the best it has been. And one of her conductors told me that she stood really well at the bar wall and was able to stay standing through an entire song! And when I went in to meet the class for swimming on Monday she was sitting by herself on the floor tugging mercilessly on the second sleeve of her shirt AND SHE GOT IT OFF ALL BY HERSELF! Then she put her bathing suit top on with very little help and was so, so proud of herself.

So yes, she is making progress. We have had very minimal tears, and she looks forward to going every day. She really enjoys watching the other kids and I think she really feels like she is part of the group. The program is really well run and I have felt welcomed by the staff and other parents.

There are other things that have fallen into place to make the whole experience even better. The house we are staying in is perfect and close to everything. Holland is thoroughly enjoying her own summer camps (last week she did gymnastics camp and this week Little Diggers at the botanical gardens) We are all enjoying a little break from the monotony of everyday life, and it is shaping up to be quite fun.

Now I just have to figure out how we can get back before next summer. I'm thinking February.

Yes!

2010-07-09T23:21:00.002-04:00

It came!!! Unfortunately, after all the excitement...after we got it hooked up and ready to go, Eden cried when we put it on because she thinks it is too loud. I'm not exactly sure if it really is too loud (it is supposed to be the same map that she has currently), or if it is just different due to the sound being crisper and clearer, but either way, Eden doesn't want to wear it. We'll do some tweaking over the next couple of days...giving her some control over the volume and such, and see if it will fly. If not, we'll have to figure out some way to get home for an audiology appointment in the next month. But, we have it, and my hard work paid off!

Off I go to finish packing for our month long foray into conductive education. We are leaving in the morning and I am just now realizing that I have no idea how to pack for a whole month away! Luckily it is not too far so if we forget anything major we can always make the hike home. Wish us luck!

Could it be true?

2010-07-08T13:44:00.003-04:00

Eden's cochlear implant processor was under warranty for the first 3 years. During that time frame the company (Cochlear Americas) replaced anything that was broken quickly with excellent customer service. The warranty expired on October 2, 2007. During the first year following, we really didn't have many problems and everything worked as it was supposed to. Since then, however, things have been breaking slowly, and we found out the hard way that replacement parts are VERY expensive (like shockingly, ridiculously expensive). But, we have made due with what we have and have luckily not had to invest a huge amount of money in keeping her processor in working condition.

Currently, her system is broken in 3 places. For the past 6-12 months the connection has been getting looser and looser. It shuts off on her at random times, and we have to keep it taped securely together for it to work. I started the process of trying to get a new processor for her last December. I found out that Cochlear had just come out with an upgrade that is compatible with Eden's system, so I wanted to upgrade at the same time that we replaced the broken processor.

For the past 7 months I have gone through the usual rigamorale of red tape...countless hours on the phone, faxing, loads of paperwork...basically trying to coordinate communication between Cochlear Americas, our implant center, our private insurance company, and Michigan Medicaid. None of this was actually too difficult. The frustration came in KEEPING the ball rolling. It seemed like nothing would happen for weeks (even months) unless I kept calling or emailing asking, "What's next?" There were other frustrations too...in terms of misinformation and runaround...but I won't go into detail about that because it is completely boring, even to me.

But...drum roll please...

I got an email today that they got final approval from Medicaid and are overnighting the new processor today! I should have that sucker in my hands sometime tomorrow!!! I am so giddy with excitement. I can't wait!

I know I shouldn't get my hopes up. I'll believe it when I see it, right? But could it be true? Is it possible Eden will have a brand new processor, with a new 3-year warranty, by tomorrow? Before we leave for Conductive Ed camp?

Oh, please, please...let it be true!

Potty Queen

2010-07-06T22:05:00.002-04:00

Just wanted to shout it from the rooftops...

My Edie-Pie is potty trained!!! No more pull-ups!!! It took 9 days for her to fill her sticker chart. She chose a trip to Chuck E Cheese as her big surprise.

Today was her third 100% accident free day, and she is telling us she has to go every time now without reminders. We've even gone to parties, hippotherapy, long car rides, restaurants, etc, with very few accidents this week.

And what, you may ask, did the trick??? What was the magical potty-training tip or tidbit that ended up working? Time. That's it. She just needed time.

This time, when we put in the extra effort, she was ready.

Walla Walla Bing Bang!

2010-06-29T12:18:00.002-04:00

I love this video. Eden worked so hard that day to get the lyrics right. Every time I listen to her sing "My friend the witch doctor..." I have to smile. So. Darn. Cute!

I also want to say Happy 42nd Anniversary to my parents. Thank you both so much for being such a wonderful example of love and commitment, and for teaching me that even though marriage is sometimes very hard work, the payoffs are huge and the good times always make it totally worth it! I love you guys!

We leave for Grand Rapids in 11 days. We are working on trying to get our house on the market before we leave. I am freaking out. Just so you know...

Give Me A Pee!

2010-06-23T13:32:00.006-04:00

I think I see a light at the end of the pee pee tunnel!

Today is day 3 in panties for Eden and I think we are making some forward progress! It's a little bit hard for me to get too excited about potty training, since I've been at it for close to 3 years now, but I am definitely thinking this might be it.

On Day 1 she peed 13 times in 7 hours, with only 2 accidents.

On Day 2 she peed 13 times in 8.5 hours, with 4 accidents.

On Day 3 (today) she peed 23 times in 12 hours, with 2 accidents. 91% success!

I have been charting the time and how much she pees, and it seems like she needs to go every half hour. This seems like a lot, but it is a very small amount every time. My feeling is that her bladder is VERY small, she drinks a lot, and she is not used to holding it at all, but rather letting it leak out in small amounts all the time. So, it makes sense for now that she has to go a lot until she learns how to hold it for longer periods.

The bad news is that we are stuck at home for a week or more until we can get the hang of this.

The good news is that I can clearly tell that she can feel the sensation to pee, and she is finally having some success at telling me she has to go and holding it long enough to make it to the potty. The sticker chart has been a helpful motivator as well.

Eden has been pooping on the potty almost 100% of the time for the past couple of months (I honestly can't remember the last time she had a poop accident), and I really feel like we could actually have her completely potty-trained before she starts kindergarten in the fall.

Go Eden!!!! Go Me!!!

And just for the fun of it...Go Holland!!!

Happy Father's Day!

2010-06-20T01:25:00.002-04:00

John-
Thank you so much for everything you do every day to make our family work. You are the best daddy our girls could ever ask for, and we all appreciate you SO MUCH!
Love,
Your Girls

My How They've Grown

2010-06-15T12:30:00.003-04:00

Holland and Eden on their very first day of preschool, September 2008

Holland and Eden on their very last day of preschool, June 2010

Congratulations to my sweet, sweet girls on their preschool graduation!

I can't wait to see what the next chapter brings.

Whoa...Slow Down!!!

2010-06-10T14:33:00.003-04:00

It recently occurred to me that my babies are going to be SIX next month!!! No flippin way! Get out of town! I cannot believe it. Six just seems so...old.

I have ONE more day of work before my glorious summer vacation. The girls have 2 more days of preschool, then their end of year picnic next Wednesday (which they missed last year because they were sick). This time, it really is the end of preschool and it brings a little tear to my eye. They will never be preschoolers again. Soon, fall will come, and they will be in kindergarten, then first grade, then next thing you know they will be in middle school, then graduating from high school, then maybe college and adulthood and on to the rest of their lives... Whoa...SLOW down!

I did kindergarten registration and orientation, and we had our IEPs (3 hours...not bad). Everything went fine with no major glitches...thanks in large part to Holland and Eden's awesome special education preschool teacher who coordinated their meetings for the past 2 years.

We were really, really lucky to have participated in the preschool program that we did. The staff both years were just wonderful and did such a good job of meeting the girls needs and including Eden in the gen ed setting as much as possible. I am so appreciative to them, and to Eden's one-on-one aide who really loves her and does such a good job with her. I honestly couldn't have asked for a better group of people to work with my kids. I stressed out a bit at the beginning of last year, because not only was it their first year of school, it was also the first time that I had to entrust anyone outside of my family with their care. This year was a total breeze because I didn't have to get used to a whole new system.

Next year might be a little bit tricky. They are changing buildings, and will be working with a whole new group of people. Everyone will be different. Except for possibly, hopefully, Eden's aide who would like to follow her to kindergarten. If that happens (and I am REALLY hoping it will), I will actually be pretty relaxed about the transition. The good news is that I have met all the new people (except for the teacher who is retiring) and I get good vibes. I think it's going to be great experience for my girls.

I am super glad that we made the decision to keep the girls back an extra year. Based on their age they could have started K last year, but I just felt better about waiting until age 4 to start preschool, and still giving them two years to prepare for kindergarten. They were really not ready for a school setting (in many ways, but mostly still ending up in the hospital with simple colds) at age 3, and neither was I. Now, they will be two of the older kids in their kindergarten class rather than the youngest. We have enough challenges and delays without that added in, and we are ALL a lot more ready.

The girls have grown up A LOT this year, not just physically, but cognitively and emotionally as well. Academically I think they are well prepared for kindergarten. They know all of their letters and sounds and both are reading at a kindergarten level (Eden is probably at an early first grade level). They count objects, recognize numbers, and understand simple math concepts (Holland is doing especially great with addition and subtraction). Eden has pretty much caught up to Holland in terms of conversational language skills and the concepts that she is able to verbalize and understand at home. They each have different strengths and weaknesses, but both are making progress all the time.

Holland had a great year with a LOT less tears. She used to cry a lot at school when it was time to transition between activities (she never wants the fun to end), but now she is much better at following the classroom routine. She has also gotten a lot better at engaging her peers and playing with the other kids (rather than ONLY digging in the dirt by herself). She still needs to work on starting and completing her work independently and efficiently. She tends to work slowly and gets distracted easily. Not a good combination. She needs a lot of reminders to keep working and stay on track, but overall she responds to redirection pretty well and is a really sweet lovable kid!

Eden does a great job of staying focused and on track with her school work. She loves to do all types of art projects and works diligently to complete them. She knows the routine at school and is very focused. Our major issue has been getting her to speak up. She talks all the time at home. Honestly, we can't shut her up (not that we would want to). But at school, or in any place where there is a lot of background noise or commotion, she is really, really quiet. She pays attention and absorbs everything around her like a little sponge, and will even tell me about it later, but she doesn't do much talking. When she does talk, it tends to be to adults in a quieter one-to-one setting. For instance, she talks nonstop to her aide every time they go to the bathroom! Ms. Jess tells me that Eden starts talking as soon as the bathroom door closes:-) We think that a large part of the problem is that she has a harder time hearing in the classroom environment, and has to really focus to weed out the background chatter and sounds in the room, from who is talking and what is important to listen to. Another issue is that her voice is still pretty soft (though a lot louder than this time last year) and the kids don't take the time to pay attention and listen carefully to what she has to say. So, she just doesn't like to talk to them much because they don't understand her! She does best with kids who are calm and like to sit and have tea parties or pretend play with stuffed animals, rather than kids who like to go, go, go, and there just happen to be a lot of the latter kinds of kids in her class this year. They are cute and sweet, but seem to be a lot busier than last year's group!

Overall, the girl's preschool experience has been really positive, and I have great expectations for next year. We are just starting the process of getting our house ready to put on the market, but because we have had such a positive experience with the special education staff in our school district, I am kinda hoping to stay in the same area.

Turns out this is a pretty good place to raise a kid with a disability.

Sometimes she's sweet...

2010-05-22T15:33:00.002-04:00

...and sometimes she's sassy.

Artwork!

2010-05-21T16:20:00.003-04:00

I especially love this one because they called me over and said "Mom, look! We worked together!" Eden drew the pink girl, and Holland added the dog ("Zippo"), the sun, the sky, and the grass :-)

Holland did this one on her own. It's a self portrait. She added a headband, bangs, freckles(?), and even a belly button. She is also walking Zippo, but told me that he "is flying up into the air!" Funny, funny girl.

Cycling Is Fun!

2010-05-16T23:06:00.007-04:00

Last summer we started talking about getting a bike for Eden. I did a little research and asked around a bit, but somehow the summer got away from us and we never got that far. Eden's home PT mentioned that there was a little girl in our town who had a bike that she thought might work for Eden, so last fall I contacted her mom and asked if we could borrow it to try it out. These adapted trikes are so pricey that I really wanted to try one and see if it would work before I invested a ton of time and money into getting one. So, we borrowed it, and it worked. I figured that I had the winter to really figure out how we would go about getting one for Eden. She was excited about the prospect, and let us know that she wanted a pink Littlest Pet Shop bike. Of course.

Before I got too far along in the process, the mom who had loaned us the bike called me and told me that her daughter was outgrowing it and probably would not be able to use it come spring. She asked if we wanted it, and I said, "absolutely."

Fast forward to about a couple months ago. I went and picked it up, and Eden became the proud new owner of a blue and green Freedom Concepts Discovery bike. Well...at least she was the owner and she would ride it...I don't know about proud. It wasn't exactly what she had envisioned (it wasn't pink), but she WAS a good sport about it.

In the meantime I hatched a clever plan, and called up a couple of my super industrious, creative-type friends. I asked if they thought they could turn this into a pink bike for Eden and they told me to bring it over! So, I dropped it off and a week later it was pretty and pink. Ron spray painted the bike light pink and dark pink, and Amy even made pink glittery beads for the spokes. They also cleaned it up and tightened up all the parts so it was a much smoother ride.

I took Eden with me so they could see her reaction, and it was everything she had hoped it would be. We put her on it and she literally TOOK OFF! She was flying on that thing, around and around their little cul de sac. We joked with her that the color pink must give her super powers. She told us that that the bike was just a lot faster without the "string" (the rope pulley that was holding the pedals up).

So, it IS faster without the pulley, but without it her toes were pointing and the pedals were scraping the ground. After getting it home, we decided to try it while wearing her taller orthotics. This worked like a charm. Now she is able to fly around on her new pink bike...which I also decked out with some Littlest Pet Shop removable stickers, a pink flower horn, AND a bell.

Instead of spending the summer learning to pedal a trike...we're gonna spend the summer really RIDING. We took it to the park a couple of weeks ago and she rode about a mile easily. She was riding circles around Holland:-) It honestly makes my heart sing to see her riding that bike. Eden has the PINK Littlest Pet Shop bike that she had dreamed of!

Special thanks to Amy and Ron, and everyone who helped make her dream come true:-)

Top 20 Reasons Moms of Kids with Special Needs ROCK

2010-05-06T13:01:00.005-04:00

Yeah! What she said!

What's Up Wednesday

2010-05-05T00:00:00.002-04:00

We're still here!

I just returned home from my 4th annual Hair Posse reunion trip. This year we went to San Francisco. It was four days of awesomeness where I got to see a whole bunch of my favorite people in the world...High School friends Jessie, Donna, Lisa, and Maggie. As a total bonus I also got to see some of my family (Aunt Katy, Uncle Keith, and cousins Abby and Drew). I love them all and had such a great time visiting!

It was a much needed break from reality, and timed just right to give me some respite right after March for Babies and right before the girls got sick with another snotty/cough virus. It started with a slight cough the day I came home, and just this evening has evolved into the start of breathing treatments and TLC with Eden. She'll probably have to stay home from school tomorrow... Hopefully we'll weather this one quickly and be back to our regularly scheduled program soon.

Work is crazy as I try to wrap up all of the end-of-the school year referrals, but I won't complain since I only have 19 more wake-ups before the end of the school year, and I still have a job in the fall.

I am working on a big, exciting, surprise post featuring Eden riding her new pink bike. Stay tuned for that and be ready to be amazed yet AGAIN. I'm not kidding. It's so flippin amazing and exciting that I can't stand it! She just needs to get well so we can get her riding again! I can't wait to show you all!

We Marched for Babies!

2010-04-28T00:13:00.008-04:00

Thank you so much to all of our wonderfully generous and supportive family, friends, and blog readers!!! Team Holland and Eden was able to raise $6,186.00 for the March of Dimes, making this our best year yet. We couldn't have done it without you!

Celebrating Life

2010-04-21T22:08:00.004-04:00

In just 3 short days we will once again participate in March for Babies to help raise money for the March of Dimes. This will be our fifth March, and over the years we have helped to raise over $16,000 in honor of Holland and Eden.

April gets to be a very busy and stressful month for us. John and I both have deadlines at work (tax season and end of school year referrals). Throw in a little pneumonia, Operation Feed Yourself failure, PMS, and a yearly girls trip (for me) scheduled one week from tomorrow, things start to get a little crazy. It happens every year that I start to lose my fund raising mojo. I have to reevaluate and ask myself, "Why am I doing this?"

So, why are we doing this???

First and foremost, we are doing this because we don't want other babies and other families to have to face the trauma, grief, and life-shattering reality of extreme prematurity. The March of Dimes is leading the way in bringing awareness to issues related to prematurity, and in funding research targeted at our personal goal of seeing fewer babies born too soon, and improving the care of babies in the NICU so that the long-term negative effects of prematurity can be minimized.

We also walk out of gratitude, for the role that the March of Dimes has played in making Holland and Eden's survival possible, and in celebration of their lives. There is still not a day that goes by that I am not reminded of their early birth on some level. There is also not a day that goes by that I do not remember how truly lucky I am. There are still many nights when I go into their bedroom to check on them before going to bed. I listen carefully for the sound of their breath and tears will spring to my eyes...because they are breathing...so calmly...so quietly...so peacefully. I don't take that for granted and I am forever grateful.

We walk in memory of the babies who did not survive, and for the parents who grieve their loss. My heart truly aches for those families, and I have shed many, many tears for them.

We walk for all of those reasons. We also walk because it gives us a sense of community and purpose, and a sense of giving back. We walk because we want to instill all of these values into Holland and Eden. We want them to understand the impact that their actions can have on the world. We want them to do their part.

We don't want them to take their lives for granted.

We want them to celebrate their lives!

John and I made our donation today. We donated 100 dollars for each pound that our babies weighed at birth. Won't you help us celebrate Holland and Eden's lives by donating a dollar (or 5...or 10) for every pound your baby(ies) weighed at birth?

Or give up that Venti Latte for just one day and donate $5 to our team in the hopes that someday fewer babies will be born too soon.

Every little bit counts!

Thank you so much to everyone who has contributed so far. We read all of your comments and feel so lucky to have so many people, both in real life and online, who care so much about our family.

THANK YOU!

PS. Notice the new haircuts??? Aren't they adorable?!?!

Full Disclosure

2010-04-19T12:17:00.003-04:00

In the interest of full disclosure, I must admit that yesterday we had a major setback in Operation Feed Yourself. We lasted 12 days. Eden lost one pound, Holland a pound and a half. After too many meals of them just sitting and staring forlornly into space, and too many entire plates of food scraped into the trash, I lost my nerve (and maybe my mind).

So, yesterday we fed them all 3 meals and they ate great.

We are going to take a week to regroup and come up with a new plan.

I can't help but feel like a failure.

The PMS is not helping.

It's a Chili's Kind of Day!

2010-04-14T08:38:00.003-04:00

Just a quick reminder that today is another Team Holland and Eden day at Chili's in Canton!

Let them know you are there to support Team Holland and Eden in March for Babies before you place your order and 10% of your total bill will be donated to the March of Dimes!!!

The March is quickly approaching...just a week and a half left to make your donations!

Thanks to everyone who has supported us so far :-)

Operation Feed Yourself

2010-04-07T21:55:00.007-04:00

That's it. I have had enough. I am at the end of my rope with the endless vortex of time spent feeding these kids. Something has to change...starting today.

I won't go into the history of our feeding woes, because it has been pretty well documented here. What I can say, with a trace of pride actually, is that we have made a TON of progress. Holland and Eden really enjoy food, and they are not picky eaters at all. They each have their preferences and eat their favorite foods with gusto. They have slowly but surely gained weight, and while both are still classified as "underweight" based on their BMIs, they are the closest to "normal weight" as they have ever been (and maybe ever will be).

That's where the pride ends and the guilt kicks in. We have clearly stalled in our operations. Yes, they eat, and yes, they enjoy eating. The problem is that we still have to feed them the vast majority of their meals bite-by-painful-bite.

This was acceptable to me for a long time. It was much more enjoyable than the active resistance to eating that we endured in the past. But I gotta admit that it is getting really old. Meals take forever. They are SO passive about eating that it is annoying. They do whatever they can to distract us, talking, playing, singing when they are supposed to be eating. There are many meals where they won't even pick up their fork and/or put One. Single. Bite. of food in their own mouths.

We are finally at a place where I feel like they WILL EAT if they are HUNGRY. This was not always true, and we resorted to feeding them in a (now deemed successful) attempt to avoid feeding tubes. But now, finally, I do trust that they will not starve themselves.

Soooo. Where do we go from here?

I read a book "How to get your Kid to Eat, but Not Too Much" by Ellyn Satter eons ago (before we were anywhere near ready to go there). It's a good book, with a lot of tips that make good sense to me. Her main philosophy is that it is our job as parents to decide what foods we will provide for our child, and our child's job to decide what and how much they will eat. Outside of our job of providing good, healthy, well-balanced meals, we should be entirely hands off about eating. This is pretty much the opposite of what we have going on right now and at this point our methods are not helping...and are maybe even harming Holland and Eden's relationship with food and with their bodies.

To put our new plan into place I (we) will have to do a lot of deep breathing and relaxation training. We are going to have to change A LOT about the approach we have been using up until now. It means more than just no more actually putting the bites in their mouths. It means no more verbal coaching, "take a bite, take a bite, take a bite." It means no more "5 more bites and you can go play." It means no more "if you finish your whole plate of food you can earn a surprise from the prize box!"

It means that we are going to really have to "keep our nerve" and let them do their jobs of deciding what and how much food they need to grow the way they are supposed to grow.

I started working on it at lunch today. I had a talk with them and told them that Mommy and Daddy and Nana and Papa aren't going to feed them their food any more. I told them that they are old enough now that they are ready to feed themselves. I made them a plate of food that I know they like...macaroni and cheese, sliced cucumbers, and pear cups. I sat with them and ate my lunch. I was finished with my meal before they took a single bite. Eventually they ate a couple of bites each, then they started with the games and I could feel my stress level rising. It was very difficult for me not to pick up their forks and start feeding them. I KNOW they would have finished most, if not all, of what I made for them if I fed it to them. Normally I would sit with them until they were done, but instead I HAD to walk away. I told them I had some work to do, and I set the timer for 20 minutes. I told them this was all the food they would have until later, so they should eat as much as they needed so they would not get hungry. And I left them to it. For the first 5 minutes they were quiet and eating. Then they just kinda sat there and goofed off until the timer rang. Each ate about 1/4 of a cup of pears, 4 slices of cucumber, and five good sized bites of mac and cheese. Maybe 100 calories worth of food...maybe.

About 2 hours later they started asking for snacks, and I set them up again with the rest of their mac and cheese. They each ate maybe another 2-3 bites and I ended up tossing the rest of it.

Dinner was pretty much a repeat of the same thing. We had chicken, rice, and green beans. They each ate most of their rice, and a couple bites of green beans and chicken. Again, maybe 100 calories.

If I can stay strong, I know hunger will kick in eventually. It's going to be tough to make it through the week though.

I feel like I need a coach, someone I can call when I am locked in the bathroom during meals to help me keep my nerve up and stay strong. I need someone to tell me...

They will eat when they are hungry.
They will not starve themselves.
They will eat what they need to grow.
They will grow at their own pace.
You are doing the right thing.

They will not die.

Eat at Chili's, Support Team Holland and Eden!

2010-04-05T23:57:00.003-04:00

Hello to all of our family and friends!
Just wanted to let everyone know that we are having two "Chili's Nights" for Team Holland and Eden to raise money for the March of Dimes. All you have to do is eat at the Chili's on Ford Road in Canton any time on Tuesday, April 6th or Wednesday, April 14th, and 10% of your total bill will be donated to Team Holland and Eden!!! It's a win-win deal...you get to eat some yummy food and we raise some extra money to support a great cause and help save babies. Feel free to go ahead and splurge with that delicious appetizer and an extra margarita! Please remember to let them know you are there to support Team Holland and Eden so we are sure to get your donation. There should be fliers available at the door, or you can send me an email and I'll send you one that you can print and bring with you.
Thank you all for your support! Enjoy your meals!
Love,
Billie

Good Friday

2010-04-02T17:19:00.004-04:00

As you can see, Eden is feeling muuuuch better and we are thoroughly enjoying the warmer weather!

The pneumonia turned out to be bacterial (a very small focal area in one lung), and once she started the antibiotic she was feeling better pretty quickly. We had about 4 really bad days where I was on the fence about taking her to the ER, but by Monday she was ready to go back to school. Now we are just dealing with the yucky side effects of 10 days on antibiotics...only 2 days left!

Thanks for all of your kind thoughts and words!

Happy Easter!

March for Babies is 3 weeks from tomorrow. Go Team Holland and Eden!

Marching On

2010-03-27T16:26:00.003-04:00

Our month was all laid out. Plans were made, and we were diligently checking things off of the "to-do" list. Then, suddenly, out of the blue...WHAM. What began as a little bit of a stuffy nose, turned into a cough, then a fever, then a couple of trips to the pediatrician, two days called into work, a chest x-ray, and a diagnosis.

Pneumonia. Again.

Eden is very sick, but for now we have been weathering it at home. She is on her third day of steroid and antibiotics and I think things are improving. Her fever has broken, but her cough still sounds scary-bad, she threw up all of her medicine all over her bed last night, and now she has an upset stomach and diarrhea from the antibiotic. On top of being generally sick and miserable, the effects of the steroid are taking a toll too. It seems like someone sneaked into our house and replaced our sweet, funny, easy-going girl with someone who is mean, sassy, and rude. We are trying to cut her some slack and hoping that she will Get Well Soon so we can have our sweet girl back.

Holland has a stuffy nose that started yesterday, so it seems pretty likely that she will be coughing soon. This cough is really bad, and if Holland does get it we could be in trouble. At least Holl is on Flovent (preventative low-dose inhaled steroid) and is getting bigger and stronger all the time, so we just have to hope for the best...no hospitals!

We have been really lucky to have had a very healthy winter with no major glitches. This time of year seems to sneak up on us with some kind of illness or another...right around the time we are breathing a sigh of relief for making it through the worst of cold and flu season!

Our lives have been forever impacted by the long-term effects of prematurity, and this recent sickness serves to once again remind us why we support the March of Dimes and participate in March for Babies. As if we needed reminding.

The walk is quickly approaching, and we would greatly appreciate your support for Team Holland and Eden. Holland and Eden are alive and enjoying life today thanks, in part, to advances in neonatal medicine made possibly by the March of Dimes. It is our hope that with continued research into causes and prevention of pre-term labor, as well as improved treatment options for those born too soon, fewer babies will face the long-term consequences of such an early birth.

With your help, Team Holland and Eden has already raised over $16,000 for the March of Dimes. We hope to continue our tradition of being one of the top family teams in our region and we are setting our sights high! Please visit my personal page to make a donation and to assist me in achieving my goal of helping to save babies!

If you are interested in walking with us on April 24th, please visit our team page and sign up as a walker. If each person walking would solicit a least $100.00 in donations we would be able to meet our goal in no time!

If you are planning to walk with us this year please let me know asap so I can start planning out our team shirts. Eden really thinks we should be the Pink Team this year, but Daddy nixed that idea:) Instead we are thinking about kelly green.

Thank you so much for you support in our fundraising efforts over the years, and thank you in advance for supporting Team Holland and Eden as we walk this year!

Half Full

2010-03-24T17:00:00.000-04:00

Eden's assessment for the conductive education program in Grand Rapids went really well and we have been accepted into their summer program. The program director evaluated Eden and seemed to be extremely impressed by our little gal. She was effusive in her compliments regarding Eden's cuteness and reiterated many times how "extremely bright" she is...which of course, made my mom heart happy. She seemed very optimistic about Eden being the perfect candidate for their program and seemed confident that she would make great strides in meeting some of her physical milestones over the 4 weeks that we will be there. Our hope is that she will make progress with standing and bearing weight on her legs, and perhaps start working toward a goal of pushing a regular walker with better form. We also hoping that Eden will learn to take more responsibility for her own body and start helping us with more of her basic self-care, such as transfers between equipment and assisting with dressing and feeding.

The program director said that this program was actually designed specifically for kids like Eden. She had some interesting comments about Eden's type of CP. Eden was initially diagnosed with spastic diplegia (high tone in lower extremities). Eventually that diagnosis was changed to spastic quadriplegia (high tone affecting all four limbs). We know that Eden is not "typical" for a child with spastic quad CP, as her spasticity (high tone) is actually very mild and fluctuates, whereas her trunk tone is quite low (or floppy...called hypotonia). So this person, who has worked with many, many kids with CP, thinks Eden's CP looks more like dystonia or athetoid CP with fluctuating tone. In the end, it doesn't matter so much to me anymore what we call it. I do however, think that a lot of what she said makes sense in terms of Eden's difficulties being much more related to involuntary movements and motor planning issues rather than just to high or low muscle tone. She says that we really need to focus now on teaching Eden to slow down, pay attention to her body, and pull it all together. I think this is spot on.

Eden is excited about the program and I think she is really going to enjoy it. I am not just looking forward to her making some gains in her gross motor skills. I am also really looking forward to her being able to meet and make friends with some other child who have physical challenges. We are lucky to have a few friends with CP in our community, and this has been invaluable in helping us teach Eden about disability and what it means for her and others. However, Eden spends the vast majority of her life surrounded by adults and children who do things easily and don't face the same physical challenges that she does. I think it will be a great experience for her to see and understand that she is not not the only one always needing help. She is not alone.

The Conductive Learning Center is a little over 2 hours from our house, so we will be packing up and living at either Ronald McDonald House (most likely option due to cost) or a hotel suite (more comfortable but pricier) for 4 weeks in July-August. John is looking into working remotely, and the plan is that he will come with us and work for at least part of the time. I am investigating some options for a summer camp for Holland at the same time, and one of my blog readers (whose blog I also read regularly) has given me some really great suggestions that I think Holland will love...although she has already made it clear that she wants to do conductive ed with Eden!

There are, of course, some downsides. One is certainly the cost. Between the cost of the program, living expenses, travel expenses, and a summer option for Holland we are looking at several thousand dollars. We will use our tax return, as well as some of our savings to fund this venture, and we will have to forgo any other summer vacations, but I am hopeful that it will be worth it. It will be an adventure! Another downside is the fact that Eden will get more benefit from the program if we do it more than once a year. If we have great success this summer and decide we want to pursue it again we will definitely have to look into some fundraising options.

As an aside, in Hungary (where the program was developed) this program is FREE. In Germany it is fully funded through insurance. In the US...nothing. I guess that Medicaid used to give a $500 stipend to help families with the cost, but that ended this year due to budget cuts. So instead, we pay more for our Medicaid and get less (diapers are no longer covered in MI as well). I'll just stop there. Don't even get me started. Pfffft.

In other news...we had a blast in Columbus and thought They Might Be Giants totally rocked. The girls were giddy with excitement when we got to the hotel, and they literally screamed and squealed when we pulled into the parking lot. The hotel was really nice and we had a super-fun time swimming in the pool. My kids are literally fish. Except that while they may think they can swim, they really can't! They were skinny little balls of energy and joy the whole time we were at the pool and they had, in their words, "a total blast."

The downside (geez, there always is one, isn't there?), is that we did not sit together. We were clueless about the time change and after a confusing morning we (luckily) finally figured it out and arrived at the show with less than a half hour to spare. Parking was a nightmare and my stress level was through the roof by the time we got to the venue. I asked at the ticket counter and was informed that the show was completely sold out, even in the accessible area. And yes, it gets worse.

John sat with Eden in accessible seating. There were 6 seats. The other 4 seats were occupied by a family of 4. And no one in their party had a disability/used a wheelchair or walker/or appeared in any way to need wheelchair accessible seating. Big Sigh. Now John, to his credit, is a much more laid back guy than I am. It really didn't bother him and he just let it roll off his back. If I had been down there I most certainly would have said something...politely and nonconfrontationally for sure, but I would have made it happen, even if just to ask if they would hold one of their small children in their lap so I could have one seat in which to hold Holland in my lap. It wouldn't have been a big deal. But...John didn't see it as necessary and just had a good time enjoying the show with Eden.

I made the most of it in the mezzanine with Holland. Everyone had fun. The girls loved it and didn't seem to mind the arrangement at all. I was the only one with an issue so I made a big effort not to get all stressed out (but I was) and to let myself relax and go with the flow. During the encore I noticed the family seated in (what should have been) our accessible seats had left so Holl and I rushed down to catch the last song with Dad and E.

Then...on the way out, as we were TRYING to make our way back to our very crappy parking location, Eden ran Holland over with her powerchair, Holland fell and hit the floor with her glasses which embedded into the side of her face, dangerously close to the eye that she was about to have surgery on. I should mention that they were both mesmerized by the 3 escalators in the atrium and were staring at them as we passed by. So neither was paying any attention to what they were doing...Holland aimlessly walked directly into Eden's wheel as Eden aimlessly drove her wheelchair. I saw it happening at the exact moment that it was too late to do anything about it. So the whole thing ended with me sitting on the floor of the venue lobby with a sobbing Holland in my arms assessing the damage. She ended up with a nice bruise and bloody puncture wound on her left temple. Fortunately it is healing nicely.

This whole experience was a nice, fresh dose of reality for me, realizing that as much as I sometimes like to think I DO, I don't and CAN'T always control everything and I don't always have it all together. There are some battles that are worth fighting, and some that aren't. Sometimes you have to stop worrying about changing the world, and instead focus on what is most important...enjoying the experience for what it is and being in the moment with your kids.

These amazing kids have really taught me so much. It is much too easy to get caught up in the "bad stuff". I could easily choose to remember the negatives of this whole experience. We were late. Parking sucked. We didn't get to sit together. The people sitting is our seats didn't even need accessible seating!! Nobody seemed to realize this was unacceptable! My daughter ran over her sister with her WHEELCHAIR. My daughter needs a wheelchair...

But if you were to ask Holland and Eden about the show...they would tell you it was GREAT! They would say that their favorite part was the shooting star song when the disco ball made it look like there were stars everywhere! Or they would tell you about the avatar puppets that were SO HILARIOUS! Or about how many times the CONFETTI sprayed everywhere! They would tell you that they got to see John and John in real life and it was SO COOL! And they played Mom's favorite 12 Crazy Monkeys song! And Dad's favorite High 5! Holland danced in the aisle. Eden sang along and reached as high as she could to catch the confetti. It was great. It really was.

And that's what I am going to choose to remember.

I am so lucky.

My kids are constantly reminding me that the glass is half full.

Reconnected

2010-03-24T12:44:00.006-04:00

After a mini-meltdown on my part the night before (I've been under a little bit of stress lately) where I convinced myself that something really, really terrible was about to happen, I am happy to report that Holland's eye surgery went great. Better than expected even. The inside muscle on her left eye had, in fact, come detached at some point following her last surgery. This explains why her eye had gone from turning IN, to looking really good post-surgery, to turning WAY out. The surgeon was able to locate the muscle more easily than he anticipated, and was able to reattach it where it was supposed to be. He did NOT have to move the outside muscle at all as he thought he might. This surgery was done at a different hospital (at least different for Holland) and I thought they did a good job with pain control and anti-nausea drugs because Holland actually had an easier time in recovery than she has in the past. She was pretty tired that afternoon, but after a nap was up again playing with her sis. The next morning she woke up pretty sore, but we had no problem controlling the pain with motrin. The morning after that (2 days post surgery) she proclaimed that she was "fine" and didn't need any more medicine.

I was a little concerned the first couple of days that her eye was turning in slightly again, but after a week I think it looks really great and probably the best it ever has. She had her post-op appointment yesterday and her eye doctor said, "I think she has had her last eye surgery!"

Let's just hope that muscle stays put this time!

If you ask Holland how the surgery went she'll say it was "GREAT!" She'll tell you that she loves her new eye doctor because he has Thomas in the DVD player at his office, and she loves the new hospital where she had this surgery because she got to watch TV in recovery and they gave her KID POP to drink!

My kids have such a way with always looking on the bright side of life.

Here is a before pic of Holland where you can see her left eye turning out:

And this is a picture taken the evening of her surgery:

Isn't she gorgeous?

In Like a Lion...

2010-03-08T22:30:00.000-05:00

I kinda like March. For the most part, it's still cold and snowy and gray outside, but at least March holds the promise of spring. The sun was shining today and the temps have been above freezing all week. The snow is melting and I heard the birds chirping this morning when I woke up. Spring is coming and we are ready for it.

This March, however, is going to be very busy around our place. So much is happening at once. I have had an anxious feeling in my chest this week, always feeling like I must be forgetting something.

Last week we had my dad's birthday dinner on Saturday and John was gone Wed through Sat evenings last week to hang out listening to music at the Hamtramck Blowout. We got a babysitter on Friday night and I went with him.

This week is crazy. John and I are both working on Monday and Tuesday, then off for the rest of the week. On Wednesday we are taking Eden for an assessment at the Conductive Learning Center in Grand Rapids. We have applied and are hoping to be accepted into their summer camp in July. Very excited about this.

On Thursday we have a pre-op appointment for Holland, and another eye muscle surgery scheduled at the university hospital on March 16. In a nutshell...the new eye doctor suspects that the inside muscle on her left eye has slipped and that is why it is now turning out. This surgery will be more complicated than previous surgeries and will require that a second surgeon is present. They will also have to check the outside muscle to make sure that it hasn't gotten too tight. If it has it will need to be released as well. Sigh. I have talked to her previous eye doctor (who is on vacation in Mexico), and she also feels it is the right thing to do. I feel like getting another opinion will only serve to muddy the waters, so we are making the decision to go ahead with this surgery based on the information available to us with Holland's best interest at heart. But I'm not happy about it.

Thursday is also John's birthday, so we'll try to throw in a little fun too:)

Friday is PT, and a pre-IEP meeting at school for Eden. Kindergarten registration is this week, and the team is going to meet to make sure we have all of our bases covered before the official IEP meeting in May. We want to make sure we are prepared for kindergarten in September (gasp).

Saturday the 13th we are taking a mini-vacation to the beautiful city of Columbus, Ohio. We are staying at a hotel with a POOL(!) and going to see one of our favorite bands, They Might Be Giants perform their kids songs. Holland and Eden love TMBG, and quite honestly John and I do too! We are all very excited about the show, but Eden seems to be most excited about the hotel pool. Only downer...we have to sit separate at the show because Eden is only allowed one companion in the wheelchair accessible seating area. I called to voice my complaint, and was told to arrive early the day of the show. If there are seats still available in the accessible area we can sit together. I am trying not to get my panties in a bunch about this...but I can't help but think about things like, "what if I was a single parent?" I wouldn't be able to sit with my two kids? Or, "what if John and I only had Eden?" We wouldn't be able to sit together with our kid? I can understand that they don't have room for large groups of non-disabled people to sit in the accessible area. But a family of FOUR, at a KIDS show??? Sheesh.

We'll get home on Sunday night, take Monday to recuperate, and Tuesday is Holl's surgery.

Then...it's work on Wednesday (St. Patrick's Day), work-related conference in Lansing on Friday, a playdate with out-of-town friends the following week, a Tegan and Sara concert, an appointment to do our taxes, and John's turn to volunteer at preschool...all before the end of the month. On top of all that I have this sudden drive to start thinking about selling our house (likely for less than we bought it for...ugh), and have appointments to look at a few places in the next couple of weeks (more on that later).

Whew.

At least March will be out like a lamb. Right?

Flashback Friday

2010-03-05T17:40:00.001-05:00

OMG I can't believe how flippin' cute they were!!! LOL

First Dry Night!

2010-02-28T22:49:00.003-05:00

Holland had her very first dry night on Thursday night!!!

I put the girls to bed on Wednesday, and in the process completely forget to put her pull-up on. She burst into my room at about 6:30am saying, "I have to go potty!" I got up with her, and as I went to help her pull down her pull-up I realized she wasn't wearing one. And she was DRY! We had a mini-celebration in the bathroom, then went into the bedroom to tell Daddy. She went back to bed and woke up again 3 hours later...still DRY! She got 8 marbles in her "Good Job Jar" and was just beaming with pride.

We tried again the next 2 nights and haven't been lucky again.

But at least I can finally see a light at the end of the tunnel.

Snow Much Fun

2010-02-23T23:11:00.005-05:00

Holland got ready by herself!

Frostina
Champ

Coolest. Snow Fort. Ever.

Miss Susie

2010-02-15T22:39:00.001-05:00

Just can't get enough!

Answers and Details :-)

2010-02-11T17:54:00.003-05:00

Thanks everyone! We are very excited with how well Eden is doing at bench sitting, and even getting her hands up a bit to play! She has come such a long way. I confess that there was a time when I thought she would never do this and she is proving me wrong. It makes me excited about what other accomplishments may be in her future.

The band at the bottom of the bench is helping her keep her feet on the floor. We discovered this just last week and it is working out awesome. Without it she tends to kick out her legs and it throws her balance off. The band gives just enough resistance to remind her to keep her legs down and she sits much more nicely.

Also exciting that she is REALLY close to being able to get herself into this position all on her own. She climbs onto the bench, straddles it and pushes up to sit, then works on getting one of her legs around.

Oh, and the other day she got up there to show Nana, and wanted to do a Ms. Susie hand clapping game. She was determined to clap her hands and actually did it for quite a few seconds without holding on at all!

She is such a superstar.

Check This Out!

2010-02-10T22:49:00.001-05:00

Notice anything super cool and exciting???

Bowling Bonanza!

2010-02-08T17:44:00.010-05:00

We are looking forward to taking the girlies bowling this weekend for a great cause. Kelly's Kidz is holding their 2nd Annual Lucky Strike Challenge. We had a really fun time last year, even though Holland was sick in the hospital and couldn't go.

We got to spend time with some of our pals...

...and show off our mad bowling skill!

You should come! Just watch out for the paparazzi...

We've Got Personality!

2010-02-04T18:57:00.002-05:00

The years literally seem to be flying by, and I so want to capture Holland and Eden's huge personalities and bottle them up so I will never forget. I want to remember the way they look, what they are interested in, how they interact with the world, and the funny things that they say. It's a shame how quickly those things seem to evaporate out of my mind if I don't take the time to write them down!

I hate to (gasp) compare them, but I don't really see how you cannot! They are each so unique, that I find it impossible to describe them without talking about how they are different from one another. I try hard not to box them in, and am always letting them know that just because they like something today doesn't mean they have to like it tomorrow. I am also constantly telling them that it really is OKAY for them to like the same thing. Sometimes I feel like they make choices about what they like just to be different from each other! Like, if Holland likes BLUE, then Eden has to like PINK...or if Eden likes ORANGES, then Holland has to like APPLES... Sometimes it even seems like they define themselves on how they are different from each other.

In terms of their likes and dislikes, they are finally finding some common ground. In the past it has strictly been - Holland likes blue and cars and trains, and Eden likes pink and princesses. Now we are discovering more and more that they BOTH like Hannah Montana. They BOTH like stuffed animals, Littlest Pet Shop, Strawberry Shortcake, Hello Kitty, and Barbie. Holland is more and more requesting to wear pink, and I can see the wistful look in her eyes when Eden gets something more "girlie" than her. But...she still gets really excited about cars and trains. Recently she was watching some Nickelodeon while I was taking a shower, and when I came down to check on them she was literally squealing in excitement about a new show that had come on...about Monster Trucks! She was beside herself with happiness, and pretended "Monster Trucks" for an hour after the show was over. So, I know she still has it in her, and that makes me happy. I like balance. I am fine with her getting into the more traditional "girlie" stuff, but I don't want her to lose her love for Thomas the Tank Engine. That would be so sad! Especially since she has said numerous times, "I'm STILL gonna love Thomas, even when I am a grown-up!"

Eden is still resolved to being all about GIRLS and is really interested in what the "big girls" like. Just this morning she asked how old she has to be before I will let her watch ICarly. I told her 7...figuring it won't be around by then...lol. We were discussing Valentine's Day cards this morning. I was asking them what kind they thought they'd like to get for their preschool class (because I couldn't find Littlest Pet Shop like they originally requested). Holland decided on Barbie cards for everyone (last year she got Spiderman). Eden wants to get Hello Kitty, but thinks that she will only give them to the girls. I told her that she has to be nice and give them to ALL the kids, but she can't fathom why a boy would want a Hello Kitty card. I explained that the boys will pick out cards for her too, and she will probably get some Spiderman cards from them, and she said "NO THANK YOU!" We'll get it sorted out by next week:)

It has been interesting to notice how much of their personalities they have retained since those early days, when they were just tiny babies struggling for life in isolettes. It really makes me realize how much of it is hard-wired. Holland continues to be the feistier of the two in many ways, while Eden is calmer and more watchful. Both can be very stubborn and set in their ways, just like their parents (BOTH of them...don't let anyone fool you!).

Holland can be so sweet and loving at times. She has great ideas, loves to play and laugh, has a great memory and a terrific imagination. She pretends ALL THE TIME, to the point that at times she becomes lost in her own fantasies and has difficulty transitioning back to reality. She never wants the fun to end and oftentimes ends up in tears when it's time to move on to another activity...like going potty, getting ready for dinner, or coming in from outside. The tears and fits get pretty infuriating, and so far we haven't come up with a good strategy to get them to stop completely. We've tried time limit warnings (like "5 more minutes) and punishments, but most of this stuff just serves to make her more anxious and makes the behavior worse.

A few months ago we started a "No-Crying Chart" that is much like Eden's Potty Chart. This worked really well for a while, but once she filled her chart and got her reward she was back to the same old thing. We are currently doing a "Good Job Jar" and she is able to get a marble in her jar for not crying during specified transitions. We also use it to reward especially nice behavior (like helping her sister with something, or picking up her toys when asked), and take marbles OUT of the jar if she is being exceptionally bratty (she gets one warning then loses a marble). We have been using this system for about a week, and so far it is going pretty good. It doesn't curb all of her innate orneriness, but at least keeps it at a tolerable level for the most part.

When Holland is comfortable in a situation, and things are going her way, she is mostly happiness and light. But the least bit of anxiety or shyness, or things not going her way, and she acts like a punk. It can be embarrassing at times, like at doctor appts when she is scowling, growling, and won't answer any of the doctor's questions. I just have to stay calm and matter-of-fact (even though I really feel like shaking her), because if I get mad or mean she just shuts down more and acts even worse.

So, if you meet her and she is in one of her "moods" just keep in mind that there is a really good, funny, sweet girl in there, she just needs a little nurturing to show her best side.

Holland really likes stories of all kinds, and likes for me to tell her stories about when she was born, when we got married, when we moved into our house, Zippo when he was a puppy, when I was a little girl, etc. She'll ask for particular stories like, "Mom tell me Zippo's story again", then will listen with rapt attention and will recall many specific details much later.

Holland has a great vocabulary and is really interested in words and what they mean. She will often stop a conversation to ask what a particular word means, then I will hear her use it several days later in a different context. Sometimes, if she doesn't have the exact words to describe something, she will make something up. For example, a couple of weeks ago she said, "Mom, my back boobs are itchy!" Back Boobs!?! Hilarious. She was talking about her shoulder blades.

Both girls are learning about time concepts, like today, tomorrow, yesterday, next week, last year, etc. That's confusing stuff for a 5-year-old! Right now they talk a lot about things that happened "when we were four" or "when we were five." If it happened a long time ago, it's "when we were babies." Holland always likes to know about our plans for tomorrow. She will ask, "what are we going to do when we wake up?" We've recently established that as "tomorrow." So now she will say, "how about tomorrow tomorrow?" That means the day after tomorrow... "What about in THREE tomorrows?" LOL

Eden is my watcher. She notices everything that is going on around her, and is very intuitive about people and their feelings. She is also very nosy. She likes to know details about people, their families, and where they live. When we meet new people or go to new houses, she needs to know how many kids they have, how many bathrooms there are, and what color their bedrooms are. Pretty funny.

She is very in tune with the dynamics of our family, and can sense it when any of us are upset or stressed out. She will stare at my face to read my facial expressions, and always tries to break the ice or be the peacekeeper if things are feeling stressful. If Holland is being particularly ornery, or John and I are bickering, she will start saying "Mom, I love you" every few minutes, and will want to hold my hand, and give me a hug or a kiss. It very sweet and cute...to a certain point. The problem is that she sometimes does this to solidify her position as "the good one" when Holland is being difficult. She will also sometimes say, "I'm being good, right Mom?", and if Holland loses a privilege, like bath time or book time, Eden will really rub it in which can be pretty annoying.

We really try to downplay the whole bad girl, good girl thing by being as fair and neutral as we can, but it does seem that Eden's natural inclination is to be more of a pleaser, and Holland tends to push buttons. But trust me, Eden knows how to push some buttons too. She especially likes to push Daddy's buttons.

Not long ago, John was taking Eden potty and she was really wiggling around, playing, not paying attention, and not helping the whole process along at all. John got exasperated with her and told her to stop playing, and to try to help him out. He said, "Eden you need to stop wiggling and BE STILL." She proceeded to say: "Well, I'm not gonna stop wiggling."
"I love to wiggle."
"It's a wiggle day."
"I DREAM of wiggling!!!"

It's pretty hard to be stern with her when she DREAMS of wiggling. She doesn't know when to stop! She definitely knows how to dish it out and how to give Daddy a taste of his own medicine.

I still love how animated Eden's face and eyes are when she is talking, and the high pitched breath intake squeal that she does when she is super-excited (I can't think of how else to describe that sound!). She also does this cute, sassy lip-smack now when she is telling stories that makes us laugh.

She loves to pretend too, and sometimes makes up imaginary characters to *be*. One night at dinner she was pretending to be a girl named Leah. She said that she was 16-years-old. Her parents had died from broken legs (?) and she didn't have a home. She read about Holland and Eden on my "blog" and decided to come live with us. Eden was on vacation in California and told her that she could borrow her wheelchair and walker, because she has CP too. We seriously cracked up when she said, "I read your blog!" That girl doesn't miss a thing.

Eden has amazing attention for so many things. She can really stick with something for a long time...much longer than other kids her age. She has especially good attention for "band practice" with Daddy. She asks him all the time when they can have band practice, and if he tells her on Friday night that they can do it on Saturday, she literally POPS out of bed the next morning saying, "It's time for band practice!!!" John will take both girls down to the basement to work on music, and Holland will lose interest before they even get set up. Eden will hang out down there for two hours, playing the keyboard and/or synthesizer and singing in the microphone. They learn all kinds of songs. Some of her favorites are Hannah Montana (of course), songs from Alvin and the Chipmunks (Daddy has a cool effects pedal that can make her sound like a chipmunk), and Tegan and Sara. She does a great version of "Walking with a Ghost." Lately they have been working on "You Spin Me Around" by Dead or Alive...sung in chipmunk voices of course.

In Eden's mind, John is a Rock Star. He was recently in a band, "Clicks & Pops" that played a couple of shows last month. Each morning after their shows she asked him how it went. I was showing her some of the pictures at breakfast, and she looked up at John and said, "Dad, you are SO COOL." "You are the coolest Dad EVER!" When he broke the news to her that he was quitting that band, her face fell and she said, "But I really LOVE Clicks and Pops. That's my favorite band!" She is convinced that when she grows up she is going to be in a band with her dad. I'll be their biggest fan!

Another thing I don't want to leave out...both girls are just now learning to say the "l" sound. We practiced it for a few days, and now I am hearing them use it in conversation, catching and correcting themselves. It's so cute how they kinda overexaggerate the llll sound to say "lllike" instead of "wike" or "lllllaugh" instead of "waff". They are so proud of themselves when they say, "Mom, I lllllove you!"

I am so proud of them too. They are so cute and funny and sweet...and sassy and bratty and exasperating at times too.

I love it all and I want to remember all of it!

Five and a Half (in 3 more days)!

2010-01-28T01:30:00.002-05:00

It's been quite a while since I've done a comprehensive update about the girls...health status, feeding and growth, preschool progress, stunning personalities...and all that jazz.

It's hard to know where to begin!

Healthwise, both girls have been doing really well. We haven't had any *sick* doctor visits in...well, I can't even remember how long, and that's a good thing! Outside of some chronic stuffy noses for most of December, we've been good. I think Holland has needed 3 or 4 Albuterol breathing treatments total since her hospitalization in October. Eden needed treatments with that October sickness too, but has only needed 1 or 2 since then, and has officially been *Hospital Free* for (almost) one year!!

Holland continues to take Zyrtec daily to help manage her allergies and eczema. She has a Flovent puffer that we use nightly, in place of the Pulmicort nebulizer treatments that she used to do to help keep her asthma under control. Eden's only medication is 15mg Prevacid solutabs daily to help control reflux. Besides those, both girls take a multivitamin, a zinc and echinacea supplement, and we recently started giving them Omega-3 softchews.

Eating and growing is also going pretty good. My only complaint is that they still won't really feed themselves. I accept at this point that is partly my (our) fault. We have fed them for so long that they just expect it, and I can't seem to get myself comfortable with the whole, "eat it yourself or starve" thing yet. Not when they are eating so well and GROWING! Holland is now 41 inches tall and weighs about 32 pounds. Eden is 40 inches tall and just recently hit THIRTY...yes, The Big Three Oh...pounds!!! We are quite excited about this and hope the trend continues. This puts Holland at the 4th percentile for BMI on the *regular* charts. Eden is above the 10th percentile on the awesome CP growth charts that I recently found (she would be in group 3 with those charts).

In terms of physical abilities and milestones... Holland continues to get private PT at home once a month, and school based PT and OT at school weekly. Right now she is working on balancing on one foot, and continues to work on core strengthening. She is doing really well jumping with both feet and climbing stairs. She can go up and downstairs without holding the railing, but I usually tell her to hold it anyway just to be safe. I still have to remind her to engage both arms when she runs (her left arm generally wants to be hand-open up in the air rather than fisted to help her balance), but overall her running is smoother and she falls less.

Holland's fine motor skills have really come along since this time last year. She is able to write her first and last name, and her letters are smaller and better formed, especially when she is reminded to write small. She draws pictures that really look like what she says they are, and sometimes surprises me. Her biggest issue with the fine motor is that she is really easily frustrated and sometimes gives up before she even gets going. One little glitch in her idea of what it is *supposed* to look like and she freaks out and tries to give up. She needs a lot of help problem-solving a way to correct the problem rather than just quitting. This worries me.

Eden has made leaps and bounds of progress in the mobility department. You may recall that she was just starting to push to sit and learning to play in the upright sitting position this time last year. She has perfected her bunny-hop crawling, and gets around the house quite speedily (is that a word?). Her upper body strength and catching reflex have improved greatly with all the exercise she does. She can maintain bench sitting for longer periods of time, can pull her legs around into the criss-cross applesauce position, pivots in and out of side-sitting while she is playing. She is also able to use both hands to play for short periods of time, and is much more balanced in the sitting position.

Eden's mind is often about 5 steps ahead of her body though, and when she gets going too fast, she has frequent tumbles and whacks her head on the hard floor. Most of the time she is completely oblivious to it and just pops right back up and keeps moving, but we all cringe when we hear her head hitting the floor. We call it "crack-a-lackin" and when there is too much of that going on we have to make her play in the family room, which we call the "soft floor." She absolutely hates being confined to one room, and will whine, "but I'm NOT gonna be crack-a-lackin!" We're thinking about getting her some type of soft helmet for her to wear at home when she is playing so that we can protect that noggin. Any ideas?

Eden continues to do private PT at home once a week, and gets PT/OT at school weekly as well. Her home PT told me last week that she recently reviewed Eden's goals from last year, and that she has met every one of them!!! Right now we are working hard on increasing stander time and more time in her pink Rifton Pacer (which requires more weight bearing than her pony walker). She also recently borrowed a nifty bolster chair that is modified with tall bars that she can sit in and use to pull herself into the standing position. She really likes this new piece of equipment, and it really opens up some fun opportunities for being more independent. Our goal for this year is that she might start pulling to stand and bearing more weight on her legs. I am cautiously optimistic.

This past spring one of my dear, kind, and thoughtful cousins bought Holland and Eden a Wii, and it has been invaluable in getting Eden to use her stander without complaint. Both girls LOOOOOVE the Wii, and could literally spend hours on it. John bought me the Wii Fit for Christmas, and we were quite excited to figure out that the balance board fits right under the new bolster/standing contraption and allows Eden to play some of the games. In fact, she has gotten pretty good at the penguin slide game and I love to see her doing it on her own.

Eden's fine motor skills are pretty good, but writing continues to be a struggle. She can write her name, but the letters are really large, might not be in the right order, and still don't always fit on the page. This is an area where she hasn't really made as much progress as I had hoped she would, and I am not sure where we will go from here. I have made it known that I want to pursue the assistive technology route more aggressively for writing once she gets into kindergarten. We will still practice handwriting, but I think to really get her best, she will need to be able to do the bulk of her schoolwork that involves writing on the computer.

(Dear Horse, Love Shadow)
Both girls have an appointment with a new pediatric ophthalmologist tomorrow. Our beloved eye doctor who has treated them almost since birth has retired, so we are going to someone new. Though I am sad to lose another doc that we loved, I am interested to get another perspective. Holland's left eye continues to turn out significantly since her last surgery, and she has a difficult time pulling it in, even when she is wearing her patch (two hours a day...still...sigh). I really don't think she is using that eye much except when her patch is on. She seems to see fine out of it, but literally moves her head to see things rather than pulling her eye in. Very sad. I fear that she will need another surgery, but I am really worried about overcorrecting (which seems to be what happened last time) and scar tissue and I'm not sure we would/could go through with it.

Eden had some updated Speech and Hearing testing done in December. The results were simply amazing. As always. I haven't received the official report in the mail yet, so I can't tell you actual scores, but I do know for sure that she made significant gains in every area, and is squarely in the average range for her real age. There were a couple of subtests where she went from getting, like 2 questions right, to testing all the way to the ceiling of the test and getting something crazy like 60 right. It was cool. On that day I took them to McDonald's for lunch to celebrate Eden's averageness. The only area that I noticed some significant weakness was in her ability to discriminate sound with background noise. This may be why we notice that she zones out a bit in loud environments where there is a lot going on. She just cannot hear as well.

We are in the process of trying to get Eden an upgrade for her cochlear implant processor. The one she has now is getting old and has a loose connection. It works, but we have to tape two of the parts together or it starts shutting off on her at random times. There is also a small crack in the battery casing. So anyway, Cochlear has come out with a new processor and she is eligible for an upgrade. There are a lot of overwhelming logistics behind it with insurance and trade in values and copays and whatnot, so I won't bore you with the details. It is going to happen, we're just not sure how soon and what kind of dent it will put in our finances yet. She is very excited bc the new processor has a remote control that she will be able to operate without taking her hearing off at all!

Preschool is going really well, and it has been such a huge relief to have the girls in the same program as last year. Eden has the same wonderful one-on-one aide, two of the rotating special ed staff are the same, one bus driver, PT/OT/ST/and HI teacher are also all the same. The kids are different (obviously), and they have a different general ed teacher and parapro...but they knew the girls from shared field trips and recess last year. All of this has just made this year seem like a piece of cake compared to last year. All of our meeting have been very unstressful (is that a word?) and the girls seem to be having a blast.

They fit in well with this group of kids, and I even think they seem more mature in some ways than some of the other kiddos. We really LOVED last year's group, and there were more girls, but I think they tended to baby H and E a little more, whereas this year they get to be the *big* girls. Eden has been taking her power chair to school once a week this year as well, and that has been a nice thing for her. I am hoping that we will be able to use it even more next year. The power chair has just been amazing for her social and emotional development. It allows her so much more independence than any other piece of equipment and I just love it. She is able to *run* around the playground with the other kids, slosh through the snow, barrel through the fall leaves, and zoom through the sprinkler... None of these things were possible before the powerchair, without have an adult carrying her all of the time. If you have a kid who is not close to walking at age 3 or 4, I highly recommend that you explore power mobility as an option. It has opened up a whole new world for Eden.

Another super cool preschool related piece of news...BOTH girls are really starting to read!!!! Gosh, I see kids learning to read all of the time at work, but it is still something so amazing to see with my own kids. They know all of their letters (upper and lowercase) and almost all of their sounds. They both have sight word vocabularies of about 20 words? Maybe more. They can do rhymes, and can generally tell me what letter any given word starts with. They are on par with the sight words...Eden may even be slightly ahead because she has more interest, but Holland is a little better right now at the sounds and rhymes. But both are really coming along, and I think they will be in a great place starting kindergarten next fall. They are also doing really good with number concepts, counting, and simple word math. Holland does great with numbers up to 10 and Eden is working on numbers up to 5 or 6.

So, this is getting really long. And I haven't even gotten to their stunning personalities yet. Guess that will have to be another post. There's still so much to tell!

Twenty Ten

2010-01-11T13:41:00.008-05:00

Things I should be doing right now, instead of blogging:
- Folding and hanging up clean clothes - the girls' and my own.
- Unloading and reloading the dishwasher.
- Sorting through the huge box of assorted mail and papers that need to be filed.
- Packing up clothes that are too small, so they can be passed on to my nieces.

The thing about it is...those things never last. I have to do them over and over and over again. When I haven't posted to the blog in a while, I start to get that nagging voice in my head..."write a post, write a post", and I start to feel bad about slacking. I feel the same way with all of those other tedious things around the house that I need to get done. But, at least when I finish a blog post...it's done. And it lasts.

This blog has served me well, and it's purpose has changed dramatically over the years. In the beginning, it was just meant to be a way to keep our friends and family informed about what was happening with the girls in the NICU. After they came home, it became a way for me to stay connected to the outside world. It was a way to connect with other preemie parents, as well as to give and share information about what we were going through. Eventually, during the roughest times, when we were learning about the girls disabilities and the lasting impact that their prematurity would have, it became a therapy tool. A way for me to unload all of the pain and grief and sadness that I was experiencing.

The blog has been useful in all those ways. It has been helpful for me, and also for other people. But I don't personally need it for those reasons anymore. I have developed a strong, lasting support network of family, friends, other NICU parents, and other parents of children with disabilities, both in "real life" and online, that I interact with on a regular basis outside of the blog. But, more importantly, I don't need it because I am in a really happy, peaceful place in my life...a place that I never really thought I would ever be. Twenty Oh Nine was a great year for us, and I feel like Twenty Ten is going to be even better!

But, don't worry. I am not going to stop blogging. I am not going to stop, because every so often I start reading through the archives. In fact, over the past few months I have been reading through the entire thing as I am changing the old pics to a new system. I have finished up through 2005, and have only 2006 left to do. So, as I work on that, I read each post again, and look at each picture and I am so, so glad that I have this wonderful chronicle of my girls' lives. It's like the ultimate baby book. I love reading the funny stories about things they have said and done and remembering what they were like as yummy little babies and toddlers. So, I can't stop. I know I would be so sorry if I did!

I would be sorry, because I want to remember what Holland and Eden are like as five-year-olds. Five is like...the best age ever! They are so funny and cute, and becoming so much more independent. I can hang out with them, and we have really great, interesting conversations. They have opinions and ideas, and, believe it or not, are even getting better at cleaning up their own messes.

I have lots to say about my almost five and HALF year olds. And now that I have convinced myself that I MUST keep blogging, I will work on another post now...

Until then...check out our new haircuts!

Holland Before:

Eden Before:

Holland After:

Eden After:

Me Before:

Me After:

It took me over a year, but I finally worked up the courage!

We Wish You A Merry Christmas...And A Happy New Year!

2009-12-27T23:50:00.003-05:00

We had such a lovely Christmas this year. Everyone was healthy, and the girls were so happy and excited about Santa. I have always loved the holidays, but seeing the magic through their eyes makes it even more awesome than it was before!

Merry Christmas and Happy New Year!!!

Sad News

2009-12-23T12:35:00.008-05:00

I am so, so sad for my friends today. They have been through so much, and my heart truly breaks for them.

Pam and Namir first contacted me several years ago when their girls were very small. They live nearby and we have had a chance to meet in 'real life' several times now. Lessa and Ivy are 24-week triplets who lost their brother Galen at 11 days in January of 2006. Their brother Reid was born last October after a full-term uncomplicated pregnancy. He was unexpectedly diagnosed with Joubert syndrome after his birth and spent 105 days in the NICU.

Reid passed away suddenly yesterday after a complicated life. He was a lucky little boy to have spent his short life surrounded by so much love.

Please visit their blog to offer your sympathies, prayers, and kind words. I understand there is very little we can do to ease their pain, but at least we can let them know we care.

Random Acts of Cuteness

2009-12-14T23:17:00.003-05:00

Delayed Reaction

2009-12-10T21:59:00.003-05:00

We established some time ago that Holland has food allergies. She is one of those classic kids with the eczema/food allergies/asthma trio that seems to be pretty common. She had a very clear reaction to eggs when she was a baby. After that happened, we had skin testing done - where they pricked the skin on her back and tested several different things, including eggs, peanuts, and several varieties of tree nuts. She had a positive skin reaction to eggs and cashews. She was negative for peanuts, but not long after had a reaction after getting peanut butter on her fingers. After that incident, I just always counted peanuts as an allergy (especially since John has a mild peanut allergy). I don't believe we ever tested almonds (or maybe we did and she was negative), but our nephew Connor has a pretty serious almond allergy, so we decided to stay away from those as well. So, we just pretty much followed a nut free diet for a few years. And we had an EpiPen handy at home and at school...just in case.

We steered clear of eggs with Holland for about a year. Then we slowly started introducing food items like pasta, salad dressing, cakes, and cookies with egg IN them, and she did fine. Eventually we tried egg again, and it seems like she has completely outgrown that allergy.

I guess as the time passed I kinda lightened up about the food allergy thing. I still checked labels for nuts, but didn't think a whole lot about it. About a year ago, we were grocery shopping and I had to run out to the car for something. When I came back into the store, Holland and Eden were sitting in the cart eating WINDMILL COOKIES, which are full of ALMONDS!!! I freaked out a little bit, AND realized that I didn't have the EpiPen (had forgotten the diaper bag, and didn't think about it because so much time had passed without needing it). But everything was fine and Holland didn't have a reaction to the almonds. So cool, no allergy there.

Then probably 4-6 months ago John made angel hair pasta and chicken with sundried tomatoes and pesto for dinner one night. I checked the label and it said it contained "pine nuts." We talked about "do you think she could be allergic?", but went ahead and tried it anyway. She was fine. Not allergic to pine nuts.

I guess that's where I started getting TOO comfortable, thinking that possibly she had outgrown ALL of her food allergies, or maybe even that she never had them in the first place!

Well, we loved the pesto so much the first time we decided to buy more. This time we shopped at a different grocery store, and the only pesto they had said that it contained cashews. We had another conversation about it, along the lines of "do you think she is allergic to cashews?" "Well, I guess we can try it, so far she has been fine, not allergic to anything." So we bought it and about a week later, John made it for dinner. Honestly, I didn't even think about it again.

Shortly after we began the meal, Holland started to complain about a stomach ache. Now, you have to realize that we have been through 5 years of feeding issues. It's not uncommon for either of them to complain about...well, pretty much anything....to get out of eating. So, I kinda blew it off and made her keep eating. :( Then her eyes started itching and she started rubbing them. Again...not really all that unusual. Sometimes if she is playing with the dog too much, or crawling around on the floor before dinner, and rubs her eyes, they get itchy. Then she rubs them with greasy dinner hands, and they get worse. So I STILL didn't realize what was happening, and I STILL made her keep eating. BAD MOM ALERT! I took her to wash her hands thinking that it could be the dog, brought her back to the table to sit on my lap, and put a few more bites in her mouth. Then all of a sudden it dawned on me.

"John, is this the pesto that had the cashews in it?" "I think she might be having a reaction to the cashews!" By then, her eyes were starting to swell...especially her left, her nose was running, she was really, really itchy all over her body, and she was complaining about her tummy hurting.

I gave her a dose of Zyrtec (which she was due for anyway) and took her up for a bath thinking I should at least get it off her skin. She was pretty cheerful and played in the tub, despite the fact that by this point it was getting late and she was in pretty pitiful shape. After her bath I did our usual hydrocort and Aquaphor routine for her eczema, put her in her jammies, and put her in bed while I went to call the doctor. I didn't know if I could/should give her a dose of Benedryl right after she had her Zyrtec, and I wanted to know what to watch out for.

While I was waiting for the doc to return my call she started throwing up. She threw up once or twice, then fell asleep. John laid with her while I was on the phone. When I came back in to check on them she started throwing up again, this time in her sleep while lying on her back. That was pretty scary. We got her up, she threw up again, then went back to sleep. After that she was fine...slept threw the night with no issues, and woke up in the morning back to normal.

I did locate the EpiPen in the midst of this, but was pretty aggravated with myself for not having it more handy. I got a little lax. But now we know. She IS allergic to cashews and I will make sure I keep checking labels and always know where the EpiPen is!!!

About a week before this incident she had an appointment with the allergist and we had talked about doing bloodwork/more allergy testing, but I still haven't followed through on it. It's not just about making the time, but about whether the benefits of drawing blood will be worth the drama of putting her through that. She had to have so many immunizations this year, on top of one hospitalization and IV in October. I'd really like to wait a loooooooong time before having to approach her with any needles again. I'm almost more comfortable avoiding peanuts and any tree nuts that we aren't sure are safe for another year or so...and keeping the EpiPen handy. Still trying to decide on that one.

Ten Things I Don't Hate About You

2009-11-26T00:00:00.002-05:00

One of the biggest life lessons that I have learned through the experience of having extremely premature babies and children with disabilities is to never take the good things in my life for granted. Over the past five years I have learned a new and greater sense of appreciation for so many little things in my life that may have been overlooked had I not had the experiences that I have had. There have certainly been times when I have wallowed in my misery, and have felt the grips of grief and despair. But there are also times when I can truly appreciate the beauty of my life, and am awed and humbled by how very lucky I am.

I am thankful for so many things; my children and the joy they bring, my amazing family (especially my mother who loves me and helps me out in so many ways), our health, our jobs, a comfortable house, and so much more than just what we "need."

I am also so very thankful for my husband and the amazing connection that we have. As with any relationship, things are often far from perfect. We have obviously had our share of trials and tribulations. We have had the usual stresses of any relationship, and then some... We argue and we get really annoyed with each other. We get angry and hurt, and we fight. But through it all, we have persevered, and I can truly say that I love my husband more now than I ever have. Even if it sounds cliche, I feel that our trials have brought us closer, and have made us stronger as a couple than we may have been otherwise.

In many, many ways we have always been perfect for each other....and we still are.

I have been meaning to do a post like this for a loooong time, but just haven't made the time to sit down and actually do it. I find myself waiting for the right occasion...his birthday, our anniversary, Father's Day...but then those days come and go and I don't get around to it. So, I am doing it today.

Thanksgiving. A day for giving thanks.

So, John, these are Ten Things I Don't Hate About You!
(Or Ten Things I Love About You...whichever you prefer)

10. I love that you email me links to articles or information that you find online that you are interested in and that you think I might like to read.

9. You help with the cooking and dishes, and you pick up after yourself. You also help me with my tech problems and take the garbage out!

8. Your passion for music. I love that you play in bands and are so driven to create. I love that you buy new music for me and care about what I like, and that you are introducing our girls to music. I especially love listening to you play Hannah Montana on the guitar and that you learn all the lyrics and sing along just to inspire our kids.

7. The way you smell.

6. You always remember special occasions, even things other guys might think are cheesy (like the anniversary of our first date and sweetest day) and I love that you sometimes bring me flowers and cards for no reason at all!

5. You are the most honest and trustworthy person I have ever met. I love the security I feel in your love for me, and that I have never had one moment of doubt regarding your dedication to our relationship and to our family.

4. You are 100% a hands-on dad. You are *present* with our girls...completely involved in their care since day one, from waking in the night, changing diapers, feeding, bathing...everything. I can leave them with you on my (rare) girls' weekends with my friends and never worry for a second. You do it all, and you do it at least as well as me...sometimes better.

3. You play. I play too, but you have infinitely more patience for it than I do. The girls are so excited when you get home from work, or when the weekends come, because they know you will think up the coolest, most elaborate games to play with them...from obstacle courses, superheroes and villains, hidden clues and mysteries to solve, and secret agent notes to decipher...they love to play with you, and I love to watch the three of you together(when I am not playing myself)!

2. I love the look that passes between us when the girls do or say something exceptionally clever or cute. I love that I can share the love/thrill/pride that I feel for them with someone who feels it as much as I do.

1. I love talking to you. After 16 years I still feel like you are my best friend and I enjoy your company. We still have things to talk about, and we see eye-to-eye on the majority of life's most important issues. I always sense that you feel the same. I feel like you value my opinions, you listen to me, and you help me to always remember the big picture.

The big picture is that we are still "meant to be." You are my soul-mate and I am so very thankful for you!

Flashback Friday: Pumpkin Fun

2009-11-20T00:00:00.002-05:00

October 1993:

October 2009:

Also quite fitting for a Flashback Friday, I got the most lovely comment on an old post today. It made me smile. Thank you Mel!

Fashion Show in Review

2009-11-18T21:57:00.005-05:00

The show went great. We had a lot of fun, and we raised a lot of money for an amazing cause.

The event was hosted by our NICU Family Advisory Board (FAB), a group of volunteer parents (including me) who have had children in the NICU, and who are committed to making it a better place for all families in the future. The fashion show is the FAB's major fund raising event of the year, and the money that we raise is used to fund several important programs, including our monthly Pizza Nights, Educate and Create, Parent-to-Parent training and support, holiday gifts for NICU families, and our popular Annual NICU Reunion. These programs and gifts support and touch the lives of families during what is often a very emotional and stressful time, and often have a lasting positive impact on NICU families.

The girls were good and cooperative for the most part. I can't say it went off without a hitch...Eden was pretty zoned out because of all the commotion, and Holland was bursting into tears every 5 minutes when things didn't go according to her agenda, but we got through it and they looked fabulous!

The liquid leggings were surprisingly comfortable, and I BOUGHT them...because I go to so many events where liquid leggings would be the PERFECT touch. Not. But I feel like a rock star in them , I love them, and I WILL find somewhere to wear them!

If nothing else, I can pair them with my mask and go as Catwoman next Halloween;)

Billie Before:

After Hair and Make-up:

After Wardrobe, with my good friend Allison:

Rock and Roll Family:

Fashionable Girls:

Family on Stage:

More Liquid Leggings:

Happy Homecoming Day

2009-11-17T22:54:00.004-05:00

Not only is today National Prematurity Awareness Day, it's also my original due date, and the day my girls finally came home from the hospital together for good.

I cannot believe it has been five years...

Happy Homecoming Day Holland and Eden. You continue to delight and amaze me everyday and I cannot imagine my life without you.

You are my joy.

A Big Day

2009-11-11T22:22:00.002-05:00

Tomorrow is a big day for us! It is the fifth annual "Fashionable Growth" fashion show, presented by our NICU's Family Advisory Board (of which I am a member). We will be modeling this year's top fashions from Elephant Ears and Vintage to Vogue.

I will be wearing "liquid leggings." Total. Rock. Star.

Tickets will be available at the door. You should come!

Flashback Friday

2009-11-06T06:45:00.002-05:00

Sigh... Watching this really makes me miss my sweet little squishy babies. They're such kids now.

Super Heroes!

2009-11-01T22:57:00.006-05:00

Halloween didn't exactly go as planned, but I think the girls had fun, and they will remember mostly the good, and little of the bad...as they always do.

We traditionally have my entire family over for pizza and trick-or-treating on Halloween, but at least 3 of my family members had a fever the week before Halloween, and my sister was very sick that day, so we decided to call the party off in hopes of limiting our exposure to all the germs.

Instead, Nana and Papa came to pass out candy, while John and I took the girls out trick-or-treating. It was pretty chilly, and Holland started shivering after about 15 minutes. Also dampening the experience is the fact that my girls DON'T do scary this year. They freaked out at the first house we went to because they were afraid of the music and decorations, so we almost had to call it a night right then! We finally convinced them that they didn't have to go up to any house they thought was too scary and we continued on. I carried Holland the last half of our outing, but even though she was cold, scared, and seeming a little out-of-sorts, she was a trooper and still didn't want it to end:)

Eden drove her power chair this year, and it was AWESOME! She drove up to everyone's front step and called out "trick-or-treat." With the exception of only one person, everyone came out of their house to put candy in her bag, and as usual, several people slipped her a few extra treats. Both girls were polite and remembered to say "thank you" and "Happy Halloween!"

We were home by 7:00, dumped their bags and got excited about all of the candy (that they won't actually eat), then had some pizza for dinner. During dinner Holland started complaining about a tummy ache, then complained that she was cold even though everyone else was warm. Nana thought her head felt a little warm, so I took her temperature and she had a fever (100.0).

I gave her Motrin and it came right down and stayed down all night. It was up a little this morning (99.8), but after another dose of Motrin she was fine all day. Tonight before bed she was cool as a cucumber so I don't think this is going to be a big deal.

But, I am glad I made the call to cancel the party. I would have felt really bad to give OUR germs to everyone else!

All in all, it was a Happy Halloween, and my girls were SUPER HEROES!

Of course they were.

The Potty Train

2009-10-14T21:50:00.006-04:00

Okay. So we've been at this whole potty training thing for a while now. Like, close to two years to be precise. I try really, really hard to be relaxed and not stress myself out. At age 2, it wasn't even in my realm of thinking. Age 3, we started working on it, but I wasn't too worried. Age 4, we got more serious, then lost some momentum, got bored, got motivated again, slacked off, and didn't really see a whole lot of progress. That's when I started to realize that perhaps THIS was another thing that just wasn't going to come easily like it does for MOST people.

Now they are 5. And I am trying really, really hard not to freak out.

Holland is potty-trained during the day. She wears underwear to school, and did all last year as well. She used to have a few accidents a week, and would ONLY go potty when we gave her frequent reminders and basically MADE her go. She is just now getting to the point where accidents are much less frequent, and she is making it to the potty on her own accord. She is NOT however, potty-trained at night. She wears a diaper to bed and wakes up every morning soaked. She sleeps very soundly, and hasn't shown ANY signs that she is ready to wake herself up and go to the bathroom during the night. I have no idea what to do.

Eden is still in the hit-or-miss stage. She wears a pull-up during the day. The only way she can stay dry is if we take her to the potty every hour, and even then, she may have an accident. We made quite a bit of progress in the potty department last school year, and had a pretty good pattern going on. Unfortunately, near the end of the school year, her one-on-one aide had to be out for a few weeks, and I truly think I saw a regression in the potty-training at that point, even at home. Then, for several months, we made no progress at all. She was back to pooping in her pull-up on a fairly regular basis, unless we got lucky.

We reinstated Eden's potty chart near the end of July. I tried, at the same time, to start a "chore chart" for Holland so that she could work toward a goal as well, but it was SO much drama...Eden couldn't stand that Holland got stickers for chores, and thought she should get stickers for chores too, and it detracted from the whole goal of potty-training, so I had to do away with Holland's chart, and just let Eden work on potty-training. Really, it was pathetic, Eden crying big crocodile tears saying, "I can clean up my toys too!!! I don't want to go potty. I want a chore chart TOOOOOOO!" I just couldn't take the drama.

So anyway, back on topic... Eden was able to earn a sticker on her chart for every time she peed, pooped, asked to go potty and actually went, and was still DRY. So, she could potentially earn up to 4 stickers at a time. When she reached one of the small stars on the chart, she and Holland could pick a small (dollar store) prize out of the prize box. When she got to the BIG star at the end of the chart she earned a trip to the TOY STORE to pick out a BIG prize. It started kinda slow, but after a little while she got the hang of it and started making progress again. It took her about two months to make it to the end of the chart and to earn her BIG prize.

So, where are we now??? It's still hit or miss. Most of her poop (like 80-90%) is making it to the potty. She asks to go potty a lot more often, and experiences a lot more success. If she says she has to go, about 90% of the time she really does. The problem is that about 50% of the time, she is still wet when we get to the potty. We have tried on multiple occasions to put her in underwear, but she just can't seem to hold her pee for long enough to really be successful at it. Like, literally, she will have an accident within a half hour after using the bathroom. We'll try again, and within another hour, another accident.

I am at a loss. They are 5 years old. Cognitively, Eden completely understands the concept, and knows what she is supposed to do. I find myself getting frustrated with her, especially with big accidents (poop), but then she will apologize profusely, and I feel like a total schmuck for giving her any grief.

At what point do I stop trying to get her in underwear and just accept the pull-ups? I have always assumed that it is possible for her to be potty-trained, but what if it isn't? How do I know? I don't want to push the issue if it just isn't physically possible for her to control those muscles that are necessary for her to hold it and control her bladder. But, at the same time, I have heard from multiple sources that there is no reason she should not be potty-trained. Apparently some people believe you can potty-train anyone, even kids with very significant impairments.

And what about the potty-training at night thing? I'm feeling some real pressure...stemming from cultural expectations, the feeling like someone might judge me as a bad parent for not having my kids potty-trained at AGE FIVE, like maybe I have absolutely no clue what I am doing despite years of training in behavioral psychology....and on and on.

I'm at a loss. Anybody out there have any ideas? I'm open to anything...but would especially love to hear some success stories from families in a similar situation.

Has anyone experienced success at FULLY potty-training their child with a physical disability after the age of five???

Please help!

Did I Mention They Can Read?

2009-10-07T00:47:00.002-04:00

Home

2009-10-04T23:58:00.002-04:00

Needed to write an update to let you know that we are all home...and very happy to be here.

Very busy, and it may take a while to regroup, but for now, John and I have polished off a bottle of wine, and are off to bed...together.

The girlies are sleeping snug in their beds. I can't say that we are completely out of the woods yet. We will be heading to the pediatrician tomorrow, and the pulmonologist in a week. I don't think they are quite ready to go back to school yet. But, we are home for now.

And happy to be here.

Staying Put

2009-10-03T11:07:00.003-04:00

Well, we're still here... Holland is definitely feeling better, and was up and around playing and having a good time without oxygen or an IV all day yesterday. We thought for sure we'd be heading home this morning. Unfortunately, last night didn't go quite like we'd planned. As she was falling asleep her oxygen saturation kept falling to 87-89. She needs to be able to stay above 90 while sleeping in order to go home. We ended up putting the oxygen cannula back on. We tried weaning it down throughout the night, but any time we went less than a half liter she started desatting again.

It's especially discouraging when we get our hopes up.

Eden is in good spirits and feeling better too, though not quite back to normal yet either. I took her to the pediatrician yesterday, and we ended up starting some steroids with her as well. Her lungs are still sounding tight and crackly, but she is still oxygenating well, still eating, and still happy. I think she'll be okay.

Crappy Lungs

2009-09-30T16:09:00.005-04:00

Sunday afternoon (Holland's looking good!):

Sunday evening (Eden was really sick here, but you wouldn't know it):

Monday included a trip to the pediatrician's office, mostly for Eden. I decided to have Holland seen too, at the last minute, because she had just started coughing early that morning. Eden had diffuse crackling throughout her lungs. "Sounds more like bronchitis than pneumonia because there is no focal point." Holland had some mild wheezing and a few crackles, but they cleared right up with a breathing treatment. Both girls were satting above 96 and were in pretty good spirits. We left with instructions to continue albuterol treatments every four hours with Eden, and every 4-6 hours with Holland, as well as a prescription for oral steroids for Eden if she wasn't sounding better by that evening. We never ended up giving E the steroids because she seemed to be doing pretty well by bedtime.

Tuesday morning (simultaneous breathing treatments, always so pitiful):

Both girls got treatments every 4 hours Monday night (John gave the 1am treatment, and I gave the 5am treatment), then they had another treatment around 9:30am on Tuesday morning. After that, Eden seemed to be doing pretty well and we started spacing out the time between her treatments. On the other hand, Holland started deteriorating and was needing treatments every 2 hours throughout the day.

I finally bit the bullet, and after dinner I packed our bags preparing for a stay and we headed out to the ER. She was satting 89 when we got here, and we predictably ended up admitted. Things got worse as the night progressed and she is now at 3 liters of oxygen, still only satting 93-94 when awake, and 89-92 when asleep.

Tuesday night (in the ER):

The ER pedi was calling it pneumonia, but we've had two more opinions since then. They say that every chest xray shows some areas of collapse in her lungs when she is sick. Even her one healthy xray isn't completely normal. The hazy parts of the xray (where there is some collapse) could be a breeding ground for bacteria, so they are treating with antibiotics to be "safe."

She has not had a fever, so they are not suspecting flu, RSV, or Strep (which a few people in my family have right now). She just has a virus. You know, the common cold.

And crappy, crappy lungs.

Wednesday morning (already asking "Can I go home yet?":