Friday, September 29, 2006

WalkAmerica Awards: #7 Walker

John and I were invited to the WalkAmerica 2006 awards that took place last night at Comerica Park for being one of the "top walkers." We also got free tickets to the game against the Toronto Blue Jays. I thought it sounded pretty cool, and I was excited about being a "top walker", so we went. We took the girls and had a great time. And the Tigers won!

Little did I know, but I got an award for being the #7 Walker in the state!!! Isn't that awesome!!! #7 isn't too shabby if you ask me! Of course, I owe it ALL to YOU, and to the wonderful "TEAM Holland and Eden" that donated and showed up to walk with me. I am especially grateful to Aunt Maureen, and the generous people at Farmer's Insurance that helped us out immensely, as well as to my amazing blog readers, many of whom I do not even know in real life, who generously donated on our behalf.

My plaque says "Thank You for Walking to Save Premature Babies." No need to thank me, really. I cannot think of anything I would rather be doing. I am, and will always be, a faithful and enthusiastic supporter of the March of Dimes, and the work that they do to help babies have a better start in life. We will absolutely be walking again next year, and will continue to set our goal even higher!

At the awards we had a couple come up to talk to us. They recognized us from the blog and wanted to thank us for helping them through a very difficult time. They had a son who was born at 24 weeks. I didn't ask, and now I wish I had, but my feeling was that their son did not survive.

Every single time that I hear a story of a preemie who did not survive, I feel SO VERY SAD. I cry for all of the babies who lose the fight. I wish for all of them that circumstances could be different. I feel grateful, even with all of the challenges we still face, that both of my girls are with me today. It really could have turned out so differently. I will never forget that, and I will try to never take their lives for granted. I will do whatever I can personally do to help more babies survive. One thing I can do is to continue to support the March of Dimes and the work that they do. I wish I could do more.

This is Eden's first work of art. She is one amazing little girl, with persistance and determination that could put us able bodied people to shame.

Monday, September 25, 2006

Holland: Walking?!

I think I can officially say that Holland is walking now, at 25 1/2 months old (that would be 22 months adjusted for those keeping track). She will still crawl if in a hurry, and she still falls A LOT, but she is able to walk all the way across the family room, and usually chooses to walk from one toy to the next. The next step is turning. She is working on it, and does suprisingly well sometimes. She is very proud of herself, and we are proud of her.

I don't know how to explain it so others will understand, but sometime they surprise me with their normal two-year-oldness (like trying to walk in Mommy's shoes). Maybe it's just because I have long since given up on reading developmental charts and comparing them to other kids their age. Well, at least I am trying to. But, wow, doesn't she look so big (normal 2-year-old that she is)?

Eden: Peek-a-boo!

Actually, it's not peek-a-boo with Eden, it's "Hiiiieeee" said in a high pitched sing-song voice. She played this game with me for about a half hour last night, after I finished washing her chocolately ice cream face. She really is that sweet.

My new favorite picture...I really think it captures Eden's personality:) Sweet, Sassy, Playful, Funny...

Saturday, September 23, 2006

Picture Post!

Hey, I took a ton of cute pics this weekend, so I wanted to get some of the older ones up. I'm getting backlogged with pictures!

I'm happy to say that we are all feeling better. We went to the park today for Holland and Eden's cousin Malachi's 1st birthday party. The girls had such a blast. They LOVED playing on the jungle gym. Holland especially liked climbing and sliding. Eden especially liked the swings and monkey bars. She can hang from the bars all by herself for several seconds. We were so suprised at how strong she is, and how much she loved it!

Holland also really loved helping Malachi open his presents. She kept trying to get in his Daddy's lap to take over. At one point she went to take a present out of my brother's hands and said "thank you." She made us all laugh. She really thought all of those presents should be hers!

Happy Birthday Malachi! We love you!

Monday, September 18, 2006

Sick and Tired, but Cute

Well, we had about two weeks of good health and good eating. You wouldn't believe how much Eden was eating! I was really worried about her going all last month without eating solid food. I was afraid that she would forget how to eat, would develop some sort of oral aversion, and would need a feeding tube. Our pediatrician told me that he thinks she will be "like any other kid" and won't eat and will lose weight when she is sick, and will eat well and gain it back quickly when she is well. I really don't know how he knows. I was sure he was wrong and was trying to prepare for the worst. He was right though. She was seriously eating all sorts of food ALL DAY long. Holland was eating pretty well too. It was a good two weeks.

Of course, all good things must end. Holland started getting a runny nose last week Thursday. Yesterday morning Eden's nose started running and both girls were coughing a little. When we picked the girls up from grandma and grandpa's house yesterday evening Holland was wheezing pretty bad. We came home and quickly did two albuterol treatments in a row. Both girls were in pretty bad shape last night and we considered taking Holland to the ER. John and I took turns giving her treatments during the night. This morning, aside from REALLY runny noses, they seem OK and so far they are still eating OK. I hope, hope, hope, that this will end quickly and not develop into any ear infections or reactive airways. Everyone cross your fingers and toes for us!

Monday, September 11, 2006

Back to School: Evaluations and IEPs

John and I had a FABULOUS time in Toronto. We've decided that if a Republican wins the next presidential election, we may just move there;) The concert was amazing. Tom Petty is my hero. What a coincidence that it was his 30th anniversary tour, and my 30th birthday. That dude has been rocking out since I was BORN!

You know what's funny? I didn't take a single picture in Toronto. Another example of how much my life has changed. If my kids aren't there, what's the point of taking pictures? What would we take pictures of? Scenery? Buildings? Us? Boring.

In baby news (or should I say toddler news?)... Both girls are relatively healthy!!!!! Eden was evaluated by the PT from the school district again today. No surprises there. She is pretty much on track with her adjusted age in the cognitive and social/emotional areas. She is delayed in the motor and language areas. Obviously. Her IEP is next week. Some of the things we will be working on are stacking blocks, and imitating crayon strokes. She definitely understands these concepts, but physically has difficulty doing them.

Eden is an AWESOME scribbler. She has a really advanced crayon grasp, and will readjust the crayon several times to get it just right in her hand. She is really into scribbling right now, especially in the tub. She has some soap crayons that she just loves, and she rolls to each side in the bath drawing very deliberately all over the sides of the tub. She gets upset when it is time to get out. She is also totally into the Little People house. She will spend hours shoving people out the door, and arranging them in their chairs at the table. She also pretends to take food out of the fridge to feed them, and us, and herself. It is very cute. She gets mad when Holland comes near her or touches anything that she is playing with. We are working on transitioning better from one activity to another, and sharing. Sharing is tough for a 2-year-old.

Holland is being evaluated again through the school district next week. She was evaluated twice before and has not qualified. With the new diagnosis, and the fact that she is 25-months-old and not walking, she should qualify this time. I suppose it doesn't really matter in the whole scheme of things, because she is getting adequate services through our private physical therapist. I would just like an IEP in place so that next year, when the time comes, she might be able to go to preschool with Eden. I just cannot imagine sending Eden to school ON A BUS without her sis...or me. She's just a BABY. In fact, I don't know that I will EVER be able to do it! I am one of THOSE parents! Who woulda thought...

Holland is getting SOOOO close to walking. She is getting more and more stable with her brace on. She is always standing up now and taking a couple of steps at a time. She doesn't hurtle forward with momentum and fall like she used to. Now she is taking very deliberate steps and balancing herself after each one. She is also getting good at stopping and turning. It's funny because you'd think she wouldn't start turning until she got a little better at walking. She does a lot of things out of order. She has been climbing on the furniture and climbing the stairs for months now. These are supposed to come AFTER walking.

My plan right now it to have home-based early intervention for both girls this year. Next year I will consider placement in the ECDD class (special ed preschool). At age four they will go to the "at-risk" preschool in our school district, and at 5 regular kindergarten. I may hold off on kindergarten until age 6 depending on how things go. Starting next year Eden will get PT, OT and Speech at school. I will check into having a one-on-one aide depending on her needs. Of course, this is all tentative. All of my plans are flexible. In fact, I am not sure why I continue to plan so far ahead. We all know that things don't always go according to plan.

Isn't that the understatement of the century?

Tuesday, September 05, 2006

This isn't what I signed up for!

Lucky I waited to write this post until today. Had I written it yesterday, it would have been much more depressing... H and E are sick...again. It's getting ridiculous. I seriously feel like a total fool even telling people. Soon people are going to start thinking I have some serious psychiatric illness like Munchausen Syndrome. How is it possible for two kids to be sick ALL THE TIME???

Poor Eden. Seriously. She hasn't really felt well, or eaten any solid food, for a month now. Occasionally she'll have a slightly better day where we can get her to eat a couple bites of cheese, a few Teddy Grahams, and some mandarin oranges. Other than that, nothing. She is basically on a liquid diet. John and I both feel like banging our heads against a wall. It's SO frustrating!

I took Eden to the pedi last Wednesday for the same sore throat that wasn't getting better. We talked about the possibility that it might still be mono, and maybe we had taken the blood too soon. Apparently mono doesn't show up in the blood until you've been sick for 5 days. There was a remote possibility that Eden was sick with something else first, then caught mono, and maybe it hadn't been long enough when we took the blood. We considered drawing more blood. If you read the blood draw post from the week before, you totally understand why I wasn't entirely happy with that option. The other option was to do nothing, and that didn't sound good either. I decided to give it 2 more days. If she wasn't better by last Fri we were going to take more blood. Thursday and Friday seemed better and I looked at her throat and it seemed to be improving. So we didn't take blood.

On Saturday (the day of my bday party when my mom was keeping the girls overnight) Eden started with a serious runny nose and cough. Completely different symptoms than before, and seemingly a NEW virus! On Sunday Holland caught it. John and I spent Sunday and Monday giving breathing treatments to BOTH girls around the clock. Monday was AWFUL. Like, "what the hell was I thinking when I decided I wanted kids" awful. Adding to the stress was the fact that Tuesday (today) was supposed to be my first day back to work! I had to call into work on my FIRST day back! I felt sick about it. How are we going to last through the winter after having a summer like this???

So I took the girls in to see the doc AGAIN today. Eden does have an ear infection that is actually pretty bad, so it's a good thing we went. We started the antibiotics today. Tonight she was in MUCH better spirits. I actually got her to eat some noodles and mandarin oranges for lunch, and a bit of a burrito, a couple bites of hot dog, and some teddy grahams for dinner. It was by far the best she has eaten in a month. No joke.

Other than the ear infection, the girls checked out okay. Oxygen sats were good, lungs were clear, and we are doing all the right things with the breathing treatments. The pedi was actually very relieved that we were in for something different, and not for the same sore throat. If her throat had still been bad, we would have been talking about lots of testing and blood work. In fact, the word "leukemia" actually came up in a conversation. Talk about totally freaking me out. Even with the disclaimer that the bloodwork we had already done was all normal, and it was a VERY remote possibility, it's just not a word that you ever want to hear in reference to your child. I really can't begin to even imagine it. Of course our pediatrician is very sensitive to this, and only brought it up because I kept asking a gazillion questions about what else it could be.

Thanks to my mom, who agreed to keep my kids on Saturday night, even with Eden sick and needing breathing treatments, I got to go out with my girlfriends to celebrate my birthday. I had a "little black dress" party, complete with a limo and an incredibly fun night of dancing. Thank you so much to all of my girlfriends who were there to celebrate with me, and to those of you who were there in spirit. You gals are the BEST!

Friday, September 01, 2006

Young Thirty

So, I've decided that my chronological age might be 30, but my adjusted age is 25. Hey, as long as I look it...

I got the best surprise from my hubby yesterday. Tickets to see Tom Petty in TORONTO!!!!!! I'm so very excited. The concert is Friday night. We're going to leave early Friday morning and come home late Saturday night. My lovely and amazing mother is going to keep the girls overnight for us...again. Have I mentioned recently how lucky I am to have my mother? I cannot imagine how much more difficult our lives would be right now without her. And I'm not just saying that because she is keeping the girls overnight this Sat AND next Fri.

So, moving on... Holland fell off the bed once again yesterday and got a good shiner. She's actually quite good at getting down from the bed herself lately. Yesterday she just made the turn a second too late and I couldn't get to her in time.

Other than that I had a really nice birthday. John made me breakfast and gave me my present before going to work. My wonderful friend Lizzie left me a gift, with flowers and balloons and an Iced Cappucino, on the doorstep that I found when I got up. I met John in Ann Arbor for lunch, then went shopping at the mall with the girls and bought myself a few birthday treats. When I got home I had 10 messages from various people wishing me a happy birthday. My favorite was a song..."Happy Birthday, you're 30, but you look like you're 21. Happy Birthday, you're 30, I hope you're having some fun." So funny.

We had planned to have dinner with Liz and Eric, but Lizzie is sick so we couldn't. John's parents came over around 6, just before John got home from work, to bring me my present, then offered to watch the girls so John and I could go to dinner BY OURSELVES!!! A rare occasion indeed. I love dinners alone once in a while so we can remember exactly why it is that we like each other so much. We have such good conversations and so much to talk about. I really like that John... He's a good guy. I was smart to marry him:)

Maybe this should be a separate post, but I was thinking about this yesterday... My mom watches H and E during the school year so I can go to work part time. If it weren't for her I would absolutely not be able to work. Not only would it be far too expensive, but there is NO daycare in the world that would take my girls. Doesn't that SUCK??? Have you ever thought about that??? I know I didn't before I had these kids. Regular daycares do not take kids with special needs. I couldn't put Eden in daycare if I wanted to. Even Holland would be a challenge. Can you imagine her in a class full of regular two-year-olds when she can't even walk?

I'm so glad I don't have to worry about it. My mom is the best daycare EVER anyway. But I still feel bad for all the other moms of kids with disabilities who can never get a break. It's NOT RIGHT and something should be done about it. And I don't mean a special ed daycare. Kids with disabilities should be able to go to regular daycares and be around other children without disabilities. It saddens me deeply to think about all of the hurdles like this that Eden is going to face in her lifetime. It's too overwhelming to even think about.

Ok, before I sign off I should mention that it is 10:30am and Eden is still sleeping. Holland is watching Sesame Street. That girl watches too much TV. I need to work on that. She just isn't happy unless the TV is on. She cries and whines and says "Bar" and "Ehmo", and "more more." I give in just to get some peace. It's the only way I can get ANYTHING done. I think I am creating a monster.