Archive for January, 2010

I am going to own up and start writing more. I am going to make it a priority. I am sorry it has fallen by the wayside. October through January are typically the hardest months for me. I struggle with Alyssa’s birthday approaching. I know… mean. However, I just know it is going to encompass seeing way more specialists than standard, answering way more questions that I want, and having her “measured up” to the world around her. That’s all well and good. It just takes a bit to mentally prepare myself. I get a bit closer each year and this year after some soul-searching and heart to hearts with people I love I’m actually in a pretty darn awesome place.

I cannot believe I’m going to have a three-year-old in less than two weeks. People tell you the time will fly. We even used to say driving home from the NICU that in a few years it would feel like a blink. However, when you are living it…even when you are saying it outloud… it is hard to believe. Until one day you wake up and your tiny baby who was so helpless and hooked up to a ton of machines is now rolling, climbing, crawling, babbling, demanding her way, and making sure there is not ONE person who doesn’t know what she needs or wants. Ha! Her developmental specialist has said a few times that although Alyssa cannot talk? You would never wonder what she wants.

I should probably use this post to bring every thing up to speed and then just roll forward. That is probably easier than trying to backtrack at this point since I have been slacking for quite some time. I’ll break it into categories to make it easier to write and read.

Let’s start at the top and work down 😉 . Ha. Neurology. Alyssa’s seizure activity has remained nearly nonexistent since getting all of her meds, all of her nutrition, and not having nearly as many emotional spikes now that we have developed “communication.” The seizures she has now are different from the ones she had before. She used to just kind of fade out for about 10 seconds (strangers just thought she was snuggling into mommy or daddy 😉 ) and then pop back like she was never out. Now, they are kind of trippy. She’s only had about one a month but they start with either her tongue or her eyes twitching, then go to her right hand, and then her right foot. It’s a gentle twitch and they last about a minute. She has had a couple awake and it’s a weird thing to watch because if it is just her hand and foot going, then mentally she is there. She has actually seized and never taken a break from the toy she was playing with! The neurologist has told me that these are neither better nor worse than the seizures she was having before. However, it does indicate that she probably has a centralized lesion on the left side of her brain. This? Explains a ton! Why she is struggling with walking, talking, etc. I asked him if he thought it was something she could overcome and he said something to the effect of “I can’t even guess. This little girl has surpassed every.single. expectation I have ever had.” That? was good enough for me. It was a good reminder that although she is approaching three and not outwardly a three year old … she has come a LONG way!

OK, next up is vision. Her eyesight has not changed a lot. She has learned to take her glasses off which although impressive… is frustrating. Ha! We have to take them off when we put her in the car or they become her favorite toy as soon as she knows we can’t get to her (yeah… she’s not smart… at ALL). We were going to try patching for a bit but as it stands her eyes are leveling out without it so we aren’t doing it just yet. We figure glasses with no patch is better than her ripping both off!

I suppose speech should be next on the list. We wanted to make sure she was getting all the opportunities she could so we took her to the dentist. Her teeth aside from one of the front ones are cone-shaped. We wanted to make sure they weren’t causing pain, difficulty chewing, etc. The doctor said although they are an odd shape… they are in great shape. I was definitely relieved about that. After all with all the spitting up she has done over the years… at least some of her good teeth genetics came through! With that, we persue speech. Alyssa has knocked me into place with her vocabulary. It consists of three words that we know she can say: Daddy, Hi, D.T. Who is D.T.? Oh, just our dog. Yes my daughter will proudly call the dog… and not say mama. I’m cutting her some slack since the “m” sound is so much harder to make, but still? she’s a turkey! She did make the “oggy” sound as the dogs ran by one day which made her developmental specialist quite pleased. She is definitely doing more sound play lately … and some of it is not whining 😉 .

Coupled with speech is feeding. She still doesn’t so much care about eating. She’ll do it. Especially at playgroup. However, she just doesn’t care if it ever happens. Luckily the tube has seved us well. I’d venture a guess that she’s at just about the 25 pound range which is quite an improvement over where she was last July. She’s definitely thriving. She still spits up quite often but we’ve figured out ways to minimize it and unless it is a situation where she is gagging… it’s just our “normal” LOL.

Hmm, what’s next? Muscles I suppose would be a good way to group all the rest? Alyssa got her wheelchair so that she can go on the bus when school starts. Let me say right now so that you can exhale and not get all tense. THIS IN NO WAY MEANS THAT SHE WILL NEVER WALK. Is it a possibility that it may take her more years? Is it a possibility she *might* never figure it out? SURE! However, the reality is now, in this moment, no one is saying it will never happen. Right now, they are saying she can’t climb the stairs to get on the school bus and she needs to have means to get on the bus. We could have gone with a special needs stroller. However, the wheelchair provides a lot more adaptability and long term use. It requires less battling with the insurance later ;). In the same vein, we were able to sneak onto Shriner’s list right around Christmas time and Alyssa gets her very own leg braces this Wednesday!! She has had hand me down ones that we are so grateful for, but they are pretty big. In addition her physical therapist brought over some knee immobilization braces that we put on her with her AFOs (ankle braces) and it lets her get a GOOD stretch of the legs. This has actually enabled her to stand up for a few seconds with the braces on! The funniest part for me is that she still crawls with her ankle braces and the full leg braces on! Talk about crazy upper body strength. LOL! There is no way  I could drag my body with just my arms unless it was an emergency. Alyssa does it like it is no big deal! Finally, we got her gait trainer (like a big complicated walker) approved through the insurance. However, coupled with a HUGE deductible this year… it is going to wait a couple months to be ordered.  I’m not tooo worried about it because I know her school will have plenty of stuff and she’ll have enough on her plate without it for a bit.

School is the next and final topic. We go Monday the 8th to figure out what services they are setting her up with. I’m going to attempt to get her into the same school as my roommate’s younger daughter. The people there are awesome. If not, I know that she’ll thrive no matter where she is. We’ve been going to a special needs playgroup on Fridays for a few months now and she LOVES it. What cracks me up is she is the only kid in group who cannot walk and I don’t even think it’s dawned on her that is different. There is one little girl in particular who I adore because she adapts to Alyssa without even thinking about it. She doesn’t treat her like a baby but does things the way Alyssa does so that she gets interaction that is just on a whole different level. Sometimes quite literally 😉 . If all the kids are running to do something and Alyssa is crawling? This little girl gets down and Army crawls with her. I. LOVE.IT. At any rate, school is coming! She will probably start February 15th. We *could* start her ON her birthday, but that just seems a bit mean. “Hey, Alyssa, you are three now… off to school.” HAHAHA! Ah well, I think a Monday is an easier day to start anyways. I’m excited. I know I *should* be sad and emotional about my baby going to school, but I know it will be great for both of us to have a regular break from one another. I plan on using that time to sew and get back to stocking my online store. I’ve been doing custom work for a few weeks and had really forgotten how much it feeds my soul to have something that is “mine” and have “my time.” Plus, I know our evenings together as a family will be awesome since the days will be apart. I cannot wait to see how much she picks up this year…and hopefully it won’t all be germs and bad behavior 😉 .

I suppose that brings everything up to speed. I’ll try to get pictures up this week. She really is turning into a gorgeous lady. She has lost so much of her baby look. She’s growing up I suppose 🙂 . At least she still lets me snuggle her… although she’s starting to fight it! If you made it this far… thanks for taking the time. I’m excited about what this year will bring for all of us. It’s going to be a lot of big changes but that has yet to slow any of us down 🙂


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