Yes, it's been awhile. We've had quite a few wrenches thrown in our lives lately, so it's been a bit difficult for me to find the energy and sit down to type everything out. Plus, I wanted to give myself time to digest some things.
In my last post I mentioned that we were scheduled to see a physiatrist (remember? the physical medicine and rehabilitation specialist). We went to see her in mid-March and I'm still not 100% sure I understand what she does, but she (and her team of what seemed like at least a dozen med students, interns and residents) asked us every question you could possibly think of and watched Charlotte do a variety of movements and tasks. And yes, paper crumbling was again a desired skill. I hope that one's on my Chemistry final, cuz then I've got that one in the bag! Even though the doctor was impressed at how far Charlotte had come considering how premature she was she gave us the diagnosis that I was not expecting ... cerebral palsy (c.p. from here on out). I had had my suspicions, but I kept telling myself that we'd dodged that bullet. So, it turns out that Charlotte has c.p., which affects her legs, trunk and possibly her arm. We've been told that it's a mild case and that she has a very good prognosis. Eventually she should be able to walk unassisted and there's even a chance that she will "outgrow it". Now, when I say "outgrow" I don't mean go away, because c.p. doesn't ever go away. But she may be able to find ways to compensate for it where it doesn't have a huge impact on her day-to-day life.
For those who may not know much about c.p. (that included myself up until last month) it is basically brain damage that affects someone's ability to control movement and to maintain posture and balance. This is why it's been so difficult for Charlotte to sit upright on her own. She actually has the strength to do it, but there's a communication breakdown between her brain and her muscles. And similar to the autism spectrum the range of severity of c.p. is vast. Someone could actually have c.p. and never know it because they've just learned to compensate for whatever part of the brain has been affected, while another person might be in a wheel-chair for life. We'll probably never know exactly what was the actual cause of Charlotte's brain damage, but it was something that resulted from her prematurity. The damage occurs either in utero or at some point during or shortly after the birth, and it is quite common in premature babies, especially micro-preemies like Charlotte. There is SO MUCH information I could share with everyone, but I'll do it a little bit at a time. It makes my head spin, too. But if anyone wants to look a little further United Cerebral Palsy has a good overview.
Since the diagnosis I've been going through different emotions - sadness, denial, a little guilt - in some ways it's a bit like mourning. Perhaps mourning the loss of what I thought our life with Charlotte was going to be like. As selfish as it is, as soon as I had children I had a certain picture in my mind of what I thought the rest of our lives were going to be like. But life decided to teach me a lesson - my daughter is her own person and I can't expect her to fit inside the image I've created for her. She needs to do and be what she wants. I've definitely reached a point of acceptance with Charlotte's c.p., and now I'm back to focusing on raising a happy, stong, independent girl. The part I can't quite get over, though, is knowing that whatever it is she wants to do in life is going to be that much harder to achieve. And don't we all just want things to be easy for our kids? I've said it before and I'll say it again ... I'm a mom and I can't help but stress.
While the diagnosis has brought mixed emotions, as well as some clarity, it has also opened new doors for Charlotte. A couple of weeks ago we started pool therapy, which we will attend once a month. Brian and I are planning to take what we learn there and then apply those techniques at the local YMCA pool. Although, that therapy pool we went to was NICE!!! If I ever win the lottery, first thing I'm doing is putting one of those in my house.
It's also been a bit easier for us to order some equipment for Charlotte. Next week she's going to be fitted for some orthotics (AFOs) that will help her to stabilize while standing and to keep her fleet flat. We also got ourselves a pair of these cute little biker-type shorts (see pic below) that help keep her legs together when standing. I think they're hysterical on, but they seem to do the trick!
In July we are also going to start an intensive physical/occupational/developmental-therapy-all-rolled-into-one regiment at a local place called Center for Independence. This place offers group sessions where all of the children do their therapy together and they sing songs, stretch, work on different positions and even play with play-doh. We watched a session a few weeks ago and we were very impressed. We spoke to some parents and they had all gave us glowing reports. Basically, the program aims to create new neural pathways in the brain to facilitate control of movements through many repetitions of the same movement. Their main goal is to make sure that kids with physical disabilities can do as much independently as possible. I definitely think it's worth a try.
Brian went home to New Zealand for 10 days at the end of March. His grandfather passed away after battling cancer, but Brian was able to make it back for the funeral. While I'm sure he would have preferred to be home under different pretenses, he was finally able to meet his 8-month old niece, Abby, and fit in a much needed visit with family and friends. I can't wait until we can bring Charlotte over to meet everyone in NZ, but I'm definitely not looking forward to that flight! Ugh!
This coming Sunday Charlotte is going to partake in her first fundraiser walk for the March of Dimes. She thought it was fitting that her first walk help raise money to educate about and prevent prematurity. We'd like to thank everyone who has already donated to the cause and helped us reach our goal!! If anyone else would like to make a donation you can do so through our Team Hellyer March for Babies site. We'll let you know how Charlotte does. I don't know if she's going to be able to army crawl all 6 miles. I'll keep the stroller on stand-by.
Let me brag for moment and tell you about all the cool things that Charlotte does ..... she says lots of animal sounds, she can hi to Bart, Amy, her dad, and her ya-ya (grandma). I'm hoping mama is just around the corner. Maybe for Mother's Day?? Hint, hint! She's becoming a pro at army crawling and is even starting to push herself up into the crawling position. She know where most of her body-parts are and she recently learned to drink from a straw, blow kisses and she gives fantastic hugs. Isn't she awesome?! Who ever thought this kind of stuff would excite me??
Now, I'm estatic about the fact that Charlotte has finally broken the 18-pound mark, but check out this picture. This is Tommy, our friends Annie and Bob's son. Guess how old he is? 6 months!! He's almost bigger than Charlotte! Start eating more, kid!My chemistry class is actually coming along pretty well. I had an A at midterm ... YES, an A in ORGANIC CHEMISTRY! And I don't want anyone saying under their breath, "Oh, it's just a community college," ... It's hard, man! And, unless I really mess something up over the next few weeks, I just might get an A overall. At the end of May I'm going to start a 5-week intensive Microbiology course that meets M-F from 6-9pm. I may just regret that choice.
Sorry if this post was a bit on the serious side, but that's just the way it goes sometimes. I'll post again soon, cuz I still need to address the poll results and figure out who all the old people are reading my blog .... how could "Mr. and Mrs." win?
Miles left to run for 2008: 328.5
Days left in office for Bush: 370
And Hillary's still in the running! Yeah, Baby!!
