It has been fooooreeeevvveer since I posted let alone updated about Little E!
She's doing quite well! We had botox for her neck and shoulder 5 weeks ago and it was rough for the first week but she's doing great now. We've seen major improvement in her neck use but not as great for her arm. We'll be going back for round 2 in late December.
She's wearing SMO's now -
Products - SureStep SMO | SureStep - And we've seen some great things.. like pulling up to a standing position! She also just started getting on all 4's to crawl!
She weighs 15 1/2lbs and is 26" long, her head is 20" now. We are being re-fitted for a helmet now that she's outgrown the need for a shaping helmet. She's getting one now that's more padding because she tips over a lot and with external hydrocephalus it can be dangerous.
Things she likes: baths, anything we're eating, putting her fingers in our mouths, and pulling daddy's beard. She also enjoys balls and anything small enough for her to shove under her armpit and scoot around the house. She is also extremely nosey and must know what we're doing.. always. She also talks, a LOT. We are up to 13 words, whoooa.
Things she doesn't like: sleeping by herself, being told she can't have things, and strollers. She loses her mind if someone is in the bathroom without her as well.
We got our Russell Silvers diagnosis last month at the geneticist.
magic foundation for children's growth : Russell-Silver Syndrome We had further panels done and sent to Baylor college. We have an appointment in a few weeks to hear the results. They needed to isolate which genetic defect caused it - there are 4 types with one that shows no errors. We also had her HGH tested so we can start clinicals for the insurance company to pay for the shots. We are now in that clinical.
Live with a child with dwarfism isn't all that different. Her physical difficulties are something she will overcome.. I think it's harder on us to see her in pain with her head and weak legs than it is for her. Seeing her get the botox was.. hard. The questions are hard - the assumptions harder. But she's healthy and so amazingly sweet and happy that we're beyond thankful for her.
Even though our chances of having a child with Russell Silvers were 1:50,000+ we got her and we wouldn't change it for the world! So much so that we started ntnp.
If you read the whole thing, thank you! I know most of you saw it all on Facebook but I wanted to document it all in one ridiculously long post.
You ladies, always!
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