Update

Well, there is great news and not so good news. First, the great news. On Wednesday we had the appointment with the International Adoption Clinic. Claire did beautifully for the team. She was examined by two doctors and evaluated by an occupational therapist. She scored 28 months (she is 31 months old) developmental for fine motor skills and will not need any occupational therapy! They said she is very intelligent... but we knew that! For obvious reasons she scores much lower for gross motor skills and verbal skills but we will address those in time. Her gross motor skills will be reevaluated after her feet are corrected and she may need a little physical therapy. They noted that she may walk but may need AFO's. AFO's are plastic braces for the legs that go from the foot, up the calf and stop at the knee. No big deal! She also may need some speech therapy but we are going to give her a little more time before we start that. She has a lot going on right now and we know that she would not cooperate yet anyway!

While we were at our IA clinic appointment, a spina bifida nurse happened to be on the floor and hear that the doctors were evaluating a spina bifida toddler. She asked if she could sit in and she gave me a notebook on spina bifida. It was wonderful to have this other resource in the room that had extensive experience with spina bifida! She let me know that there was no sign of tethered cord. Tethered cord is when the spinal cord gets attached to the spine, sometimes due to scar tissue. This happens in spina bifida patients and can be very damaging. That was a relief! She also told us what to look for and got us an appointment with the Spina Bifida clinic for when we get back from St. Louis. She was really positive about how well Claire is doing!

The "not so good" news is that while talking with her, she became concerned that Claire's bladder may not be functioning properly. This has been my concern too, as I noticed that she did not seem to wet enough diapers during a day. One of the affects of spina bifida is that it causes nerve damage to the nerves that control the bladder and bowels. Often the bladder will never completely empty and may not even void except when it "overflows". The great thing was that the spina bifida nurse was able to get the radiology department to fit us in for some tests this morning because this can be a serious issue. So, Claire had an ultrasound and a a test for bladder reflux this morning. The ultrasound went well, in that she has two kidneys (it is common that there only be one) and they are both functioning. Then she had the reflux test. For this test, they catheterized her, emptied her bladder and then filled it with contrast. They were checking to see if the contrast backed up into her kidneys and also if she would void all the contrast out. On a scale of 1 to 5 with 5 being the worst, Claire scored a 5 for reflux and she definitely does not void properly. This was not good news. So, I called the spina bifida nurse, Stephanie and asked what we should do at this point. She knew that we had an appointment with the Neurosurgeon today and said she would speak with a specialist about the report on Claire and meet us there! I will have to say that I have been very impressed by the staff of MUSC! They have gone above and beyond to help us!

Stephanie came to us after the Neurosurgeon left and she explained that Claire is going to have to be catheterized on a schedule to keep her kidneys healthy. She then tried to train us to do it. Claire was less than cooperative but, we got the general idea and left the hospital with a backpack of catheters and a little post traumatic syndrome! Once home we were quick to call our dear friend, Joanne. Joanne is a pediatric nurse and graciously came to the house at 6PM and 9PM to help us while we adjust to this process.

While a neurogenic bladder can be a very serious issue, the negative affects can be reversed at this point. We were told that this is something that can be easily managed and that Claire will come to be able to do it for herself in time. Our first day was a tough one, but they promise it will get better!

Now, about that Neurosurgeon appointment. The doctor said that according to the MRI, Claire does not have hydrocephalus! She does have larger than usual ventricles or cavities in her brain but they are not so large that he would be concerned. Her actual head circumference is completely normal and she appears to have good drainage! He does want to do a follow-up MRI in 6 months to be sure there is no change, but he thinks she is fine!

I know many of you have been and are praying for Claire and we so apprieciate this! Please continue. She has so many things to get used to right now and we just added one more, not to mention that she is supposed to begin her casting on Monday! We also heard that there is flooding in the St. Louis area so we are concerned but will be checking with the hospital tomorrow. We are hoping we will not have to postpone her treatment but we don't want to put our family in jeopardy either!