Talked with neurologist

This morning I left a message for the neurologist and at 5:30pm I received a call back. For those who may not know, Arianna has a sacral dimple, which can be a sign of a tethered cord or other anomalies. We had an MRI done in December to check her full spine and also her brain since kids with DiGeorge Syndrome can have brain anomalies as well. The results came back negative for the tethered cord, praise God! She has a ‘butterfly vertebra’ of her T10, which is around the middle of your back. He said this mean her vertebra was not formed correctly and has the shape of a butterfly when a normal vertebra has a round shape. I asked if there are complications that can arise from this such as scoliosis. He said he cannot say since he is not a scoliosis doctor. So I asked, “Okay then who is?” He said we would have to see an orthopedics for that. He did say in plain terms, “If you are building with block and you have a block out of line, you will eventually have a shift. This is the same thing with the butterfly vertebra.” He didn’t feel we needed to see an orthopedic right away but is definitely something she will need to be followed up on as she gets older. He said it is worth discussing with our pediatrician at our next visit which is next month. He said from a neurology standpoint the vertebra isn’t pressing on any nerves and she wasn’t showing any neurological problems. I asked about things to look for and he said to keep a close eye on back pain, posture, and if one shoulder is higher than the other. I asked about further followup that would be needed. He said since they know what is already there then a simple back x-ray would give us the information we needed but that can be done by her primary.

I did asked about the brain scan but he didn’t have the scan in front of him. Isn’t that nice you would think since he is calling about the results he would have ALL the results. He asked when the brain scan was done and I thought….HELLO, at the same time, don’t you know anything about my daughter. But oh well, we are all human. Moving on… So I read the results to him that had me concerned. The part that I didn’t understand said, “Incidental note is made of cavum septum pellucidum and cavum vergae.” He said the ‘cavum septum pellucidum’ means there is a thin membrane between the lateral ventricles that are filled with fluid. The ‘cavum vergae’ is just an extension off of that. I asked if this was normal and he said yes. It does not affect the blood flow and nothing to worry about. Some people have it and some don’t. I asked if this will cause any problems and he said no. I asked if there was anything that indicated why she has a speech delay and he said there are no structural findings that can indicate why people have speech delays or mental retardation. It is something on the microscopic level and we already know she has the 22q deletion, which is the cause for all her medical problems.

I still don’t feel very educated about the subject so I’ll probably continue to do some research myself and TRY not to dwell upon it. The most important thing is that she does not have a tethered cord, no scoliosis, and brain scan looks good. I have already put the butterfly vertebra in Gods hands and will let him work on that himself.

We have officially been discharged from the neurologist and praise God for giving us one more doctor we can check off our list. HALLELUJAH! Isn’t God so good?!?!

Arianna has had so many medical miracles and I know its because I put all my trust in the Lord. He is using my daughter as a tool to share how wonderful he is. I can still have my moments were I get down about her having a genetic disorder but I will not allow it to control my life. I have a fun, loving, energetic, beautiful 13 month old daughter who is amazing doctors left and right. Like I have said before we’re just taking things one specialist at a time and one miracle at a time.

God Bless!