Wednesday, August 10, 2011

So, how IS she doing?

Looking back at the blog lately, it's been a while since I've given a real update (besides just keeping you up to date with her cuteness!)

So, I'll start with the good one...


Doing great! She went to the club foot clinic in July and they said her feet look perfect! She couldn't believe her feet started out as severe as they were and are doing so good now. She needs no bracing during the day, and still sleeps in that very annoying (for me) shoes with a bar between them at night. Luckily Ruth doesn't mind it, it is just part of the bedtime routine. We go back in Oct for a checkup.

Milestones/Physical/Occupational Therapy:

Right now she is working hard at meeting her milestones. As far as physical therapy goes - she is four point crawling, sitting well, transitioning to sitting (all of those she has been for several months). In June she figured out how to pull to a stand on our ottoman, and is quite the pro at that. She will cruise along the ottoman just a little bit. But her legs don't quite cooperate yet. They are very weak, and we work with her with her PT and also daily on exercises that help her build up her strength. We don't know what muscles, nerves, etc are effected by her SB, so she uses the ones she can and has to compensate for the ones she can't. But the determination in this girl, well, it is amazing. Her PT also worked with her crawling up the stairs, when motivated to get Momma's car keys, she made it up about four stairs! However, it has not been repeated since - all about motivation with that little one! She sees the PT 3x a month. We decided to wait on getting her the bracing I talked about before, to give her a chance to build up more strength. She will probably need them soon, however, to keep her feet in a good position to start walking.

As far as Occupational therapy goes, she has figured out how to put objects IN something (not just take them out), has become quite the pro with those pinchers picking up every tiny thing she can find and put it in her mouth, she is self feeding pretty well. Working with her with a shape sorter. Overall she is doing well. She sees the OT 2x a month.


Her head circumference is still at the top of the charts, which is a little concerning but not overly so. We know there is about a 50/50 chance the ETV surgery she had in May will not work, and she will either need it again, or need to have a VP Shunt placed. Unless she starts having problems before then, she will have an MRI at the end of Sept, and follow up with her neurosurgeon in early Oct. Please pray she will not need any further surgeries.

MOMS Trial checkup:

Ruth, Matt, and I will fly down to SF at the end of Sept for her follow up with the MOMS trial. It will be two very full days of tests, including VCUG, full head and spine MRI, ultrasounds, and I don't know what else. She will also be evaluated for developmental milestones by a doctor that won't know whether she was prenatal or postnatal. I am looking forward to going back. SF was my home for 3 months last year, and as hard as it was to be away from my girls - I miss it and especially the friends we made there. I hope we get the chance to see some of them, but most of them aren't there anymore either.


Ugh, this is the one that just drives me crazy. We had her urology checkup this week, and it wasn't the greatest of news. Since she has had a couple recent UTI's - she is now back on Ditropan and will be going in for a DMSA (kidney scan) to check for kidney damage. Hoping HOPING we can keep her from having any more UTI's. Since she has kidney reflux - UTI's are especially dangerous because the bacteria can get up in her kidney's. Please pray her kidneys stay healthy. This part, is my nemesis. In the past, kidney failure was the leading cause of death for people with SB. Not something to mess around with, people. And definitely something I take seriously.

Leaving you with a poor quality cell phone photo of Ruth at her latest checkup. My phone camera went caput, and all I had was the front camera (the one you use for video chat), and the quality isn't the greatest. You will be happy to know, I got the rear one repaired, and I can now torture all my facebook friends with photos again ;-)