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Pulminologist said that her RAD and CLD are worse than ever, she needs to have the surgery or her lungs and air way could continue to deteriorate. Of course we dont' know about the surgery for sure until we see the GI doc on Monday.
Saw the Nuerologist yesterday and she officially dx'd Anika with mild cerebral palsy. Her neurologist thinks that it's the CP that's causing her GERD to continue to be so bad (since most kids outgrow it long before they are 2). Anika is hypOtonic through out, adn she thinks it is also effecting her smooth muscles inside her body (esophagus, stomach, intestines, etc.). This has me frightened that there may be no end in sight for her digestive and respiratory problems. She also has SID for sure, but her OT is very good, so I'm hoping she will resolve some of those issues soon.
I'm so thankful that what Anika has have names, so we know how to treat her, and have some idea what to expect in the future. I keep trying to imagine what it would be like if no one knew why Anika had all these struggles. So, thank God for modern medicine So now we get to see the Pediatric Ortho-guy, and hopefully get some AFO's for Anika ASAP- the poor thing is a walking bruise!
I did get some good news this week. Anika's PT told me that she was amazed at how Anika has over compensated for her physical disabilities. Despite CP, Anika is not delayed at all physically, she does everything she sets her mind to (which is everything, lol). She looks "funny" when she does it, but she's doing it. I of course knew all of this, but it was so nice to hear it from her PT. I'm so proud of Anika!
Krista, I am glad you got some answers and now can start doing the next step. The not knowing is the hardest part especially for a parent with a young child! Now, you can hopefully focus what can make her better and/or to make her life more special.
I know you must feel awful that she may have CP and that she won't have that "perfect" life but in reality be grateful it is CP and that it is not a progressive disease. And like you said with today's modern technology they can find ways to make life more adaptable. I want to know I have had CP since birth so I have BTDT as a child, teen now as an adult and have a beauiful daughter who is "perfect" in every way (healthwise too!). I thank God every day for that. Especially when she was a Birth Control Pill baby and I didn't know until 6 weeks into my pregnancy and I was on BC and on seizure meds so there was a 10% she could have been disabled herself in some way! You know I'm here if you need to talk about anything! Or stuff on CP as well. (((((HUGS))))