A Little Snow...Finally!

The Highlight of 2011

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

Prematurity Awareness

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

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

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

My Darling Daughters

School, Solutions, Schedules, and Surgery

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!