Tuesday, August 20, 2013

Move It Move It!

Our little princess is one tough cookie! I cannot imagine how she felt before decompression #2. The progress we have seen has been amazing. There's not really any other word for it. Even though she does not get another MRI until December, I already know what it's going to say in my heart. I know the syrinx is either gone or shrunk significantly. We have a NEW KID. As I write this, she is sitting in her bouncy chair pressing away on her musical flowers. Most parents would be ready to smash the thing by now, but hearing that sound (albeit annoying as it is!) means so much to me. Because a month ago she could have cared less. She didn;t want to play with toys, she didn't move her arms. Yet here she sits, twirling the flowers, making them go, and entertaining herself for the first time in her life. She is trying her hardest to sit up even though she still has another week to go before she's allowed. And best of all, we see leg movement all the time. Coming from little to no movement to frequent kicks and wiggles pretty much makes me cry. No lie there. I had almost resigned myself to the fact that my daughter would never walk, even a little. It doesn't even really matter whether she does or not as long as she's happy and independent. But this gives me so much hope for her mobility. I cannot wait to get her braces so we can really see what she wants to do. The food trials are going so much better than we could ask for. She wants more, more, more! Her five trial bites are never enough for her. And her language is improving too, she is developing new speech sounds that we've never heard her say before and she even throws me a bone now and then by saying mama. Occasionally. Dada is still the word of the day, every day!

Mommy is back to work and while I am sad to leave my baby girl, I am happy for all the blessings my family has received over the last couple of months. So many good changes have happened and we're looking forward to the first day of the rest of our lives as we work to get back on our feet. I don't want to jinx it, but we are starting to see the light at the end of the tunnel.

Sunday, August 4, 2013

Nom Nom Nom!

For the first time in a very long time I can say we had a great result from an appointment. Callista is healing up nicely from her decompression but still has to wait until her six week mark before she can start working on building up those neck muscles again. We're going to try to go back to therapy two times per week as long as Callista stays as happy as she has been.

The interdisciplinary feeding clinic was a huge success. We met this team for the first time on Thursday and already they've been more help than anyone else regarding Callie's GI issues. The doctors on the team agree with me that there must be something else besides reflux that is contributing to her excessive vomiting. After over a year of hearing there's nothing else we can do besides surgery they told us there are several medications that could possibly help. We have not just one choice, but many choices if this first med doesn't help. I couldn't believe it! The feeding team evaluated how Callista can eat by mouth and gave us suggestions on starting oral food as well as a referral to speech therapy. Not only can speech therapy help with oral motor skills, but maybe our baby will talk soon! I still have to schedule the speech evaluation. I know it's one more thing to add to our plate but we'll do whatever it takes to make her successful. We will also go back to the feeding team once every 3 months for them to reevaluate and give new suggestions, as well as see their therapist once a month for consultation. At least it's a change in scenery since this one is in Dublin rather than NCH.  Miss Callie is also very happy with this visit because she gets to try real food three times a day! She may not be completely sure what to do yet, but she sure enjoys the taste.

We have a GI appointment tomorrow and I'm guessing it will be our last. They've been less than helpful and it will be one thing for us to eliminate trips to Columbus for. The only reason we are going back this time is for follow up from her gastric emptying test. Wish me luck and patience...