Hadley and her Boo-Boo's

I have obviously been watching too much Doc McStuffins! (the big ole book of boo boos!Thanks to Disney Jr. 24/7) I thought it would be good to give a rundown of her diagnosis's to date so you can see how we got to the decompression. Hadley was born with Myelomeningocele Spina Bifida. SB has 3 different types, occulta, meningocele, and myelomeningocele. Myelo being the worst case, where the spinal cord and nerves are actually exposed through the opening. Her opening was at the S3-S5, or sacral. That is basically the lowest you can get which typically you have a great outcome with that. But the funny thing about Spina Bifida is you truly do not know what you are going to get or why. It's a whole bunch of wait and see and it is often refered to as the snowflake defect because no two cases are alike. You are constantly learning, at least this first year that has been the case with us. Along with SB she was born with Hydrocephalus (water on the brain), which is very common with SB, I think about 85% of the cases to turn into severe cases requiring a shunt. Alot of times when the closure surgery is performed, within 24 hours of birth, the hydrocephelus will change. Most surgeons like to wait and see because you do have that chance of it getting better. Hadley's shunt was placed when she was 19 days old. Hers was more of a gradual increase but it did get to the point of needing a shunt. She has also had 2 revisions to date. And they were back to back but we are going on 7 months of no issues so we are very grateful for that. Right around the time of the revisions she also had hip dysplacia. She wore a harness for a little over 6 weeks.

I know it looks painful but in true Hadley fashion it did not bother her in the slightest. And it was worth it because follow up xrays have shown that her hips are staying in place. After her harness was removed she was really set back though. She was braced in that position so she was not having to work at all. We ramped up the physical therapy at that point. Which we were seeing progress but very slow progress. Also during this time we started seeing a Ophthalmologist for her eyes, they were remaining crossed. She was diagnosed with Strabismus in both eyes and we started scheduling that surgery. Which we did have at the very first of this year and as far as surgeries go (and we have had our fair share) that one was fairly easy and quick. I think we arrived at 7am and were home at 11am same day! The cover picture was taken before her surgery and I haven't really gotten a great picture after yet. (If you know me you would know I am not skilled in photography) Obviously that was done by a professional and I just love it. So back to the boo-boo's we are pretty much up to the syrnix. I said before she was just not progressing if at all in some areas you would think she would be by now. Mainly her head control, she is still pretty wobbly and cannot maintain her head upright for long periods. Her right side is noticably weaker than the left also. When we saw the neurosurgeon in early December he was concerned and scheduled the MRI. Which brings us to today and the decompression surgery.