We have been unbelievably blessed that Callie Anne has been so healthy over the last few months. Yes, she had pneumonia and two stomach bugs, but that’s just “toddler stuff” not “Apert stuff”! There are so many things that can “go wrong” with kids with this syndrome, but she has truly had it pretty easy so far. Even with 6 surgeries in her first year of life, she’s still doing great. After that first year of constant crises, surgeries, and very scary days, things are calm for now. Here’s an update on where we stand.
She started the toddler preschool program at the Sunshine School and Development Center in August. She absolutely loves it and so do we! The passion and dedication they have there shows in every way. All of a sudden, she went from being a baby to being a full blown toddler! Her daily report sheets always say that she’s “vocal”, “active”, “energetic”, and “happy”. She’s charming everyone in the building and I even had to talk to them about not letting her con them into not doing the work she needs to do! Sometimes she’s so cute and charming that it’s hard to tell her “no” or make her do things she can do, but doesn’t want to do.
NO SURGERY ANYTIME SOON!
That’s right…Callie Anne will not be having any surgeries in the near future. She recently had a neuro and opthamology check up which both showed no problems at all! It’s very common for kids with Apert Syndrome to have eye problems and require glasses and, in most cases, surgeries to correct eye muscle problems. As of now, she isn’t showing any signs of problems in those areas. She also is showing NO signs of intracranial pressure that would indicate it’s time for another cranial vault remodel surgery. We’ve talked with her surgeon, Dr. Fearon, and based on all her exams and her amazing development, he sees no reason to do another skull surgery. This came as a surprise to us as we had expected her to need one this past summer, then when that wasn’t needed we thought for sure it would be this fall. Getting the news that is STILL isn’t needed was music to our ears!! He wants to see her in Dallas in March and we will reassess at that time. She just continues to defy the odds and prove us all wrong.
WE HAVE A WALKER!
In another feat that has amazed us beyond belief, Callie Anne is now walking all over the place! We were prepared for her not to walk until possibly age 3 or later. But, this girl has blown away every milestone so far, even if it was a little later than others. She is so independent and curious that she can’t be held back! Getting the AFOs (orthotics) was such a gift and has given her the stability in her ankles to balance. She loves wearing them because they give her the confidence she needs to walk comfortably. It’s so fun to see her toddling all over the place!
TIME TO EAT!
When CA was 6 months old, she had a Mic-Key button (or feeding tube) surgically placed so she could get the nutrition she needed. She had very low tone in her facial muscles which kept her from being able to manipulate foods and liquids to swallow. She also has a cleft palate that kept her from being able to create suction to drink from a bottle. In addition to all of that, she aspirated everything she swallowed, including saliva.
Last March, after a swallow study at ACH, she was given the “all clear” to start feeding her pureed foods. It was so exciting and she loved it! It didn’t take long before she was even drinking from a sippy cup. She still received tube feedings, but was enjoying tasting the pureed foods.
As she’s grown so much lately, we thought we would try some finger foods last weekend. Well, it was a HIT! She is eating EVERYTHING and having absolutely NO problems! I plan to talk to her nutritionist next week and see if we are close to not needing to tube feed formula anymore because she’s really getting typical toddler nutrition now.
She even had her first restaurant kid’s meal tonight! For most toddlers, this is a fun experience, but isn’t a huge milestone. For Callie Anne, it’s HUGE! For almost 2 years now, she’s sat and watched us eat at every single meal. We would tube feed her at the table in restaurants or at our dinner table. She has been able to eat Puffs because they dissolve in her mouth, but until the last few months, she didn’t have any teeth. We’ve had to feed her the purees in between our own bites. Now, I know this is typical for young kids, but most parents don’t have to do it for 2 years. Since this weekend, we’ve been enjoying our meals while she sits with us and enjoys hers. It’s a whole new experience for our family, and to be honest, a pretty emotional one for this mama. Tonight, being able to order from the kid’s meal for the very first time was a moment that brought David and me both to tears. We truly feel like a “typical” family for the moment.
We know that with Apert Syndrome, things can change at any minute. Literally. And we watch it happen to our Apert family all the time. Every time we see or hear about one of our Apert friends having medical problems, we feel a lump in our throats. While we are enjoying being a somewhat “typical” little family right now, we are also realists and know that we cannot take one minute for granted. We appreciate every single day of health and every single milestone Callie Anne hits so much because they are sometimes hard to come by. We think every day about our friends with Apert Syndrome who aren’t in a “healthy streak” like we are.
For now, we are just reveling in God’s grace and loving watching her grow and learn.