I’m going to let my wife provide this blog entry. She did a fantastic job of getting all this down on “paper” and communicating what we do know (and what we still don’t).
Hello friends and family ~ Thank you sooo much for praying for our family!!
We got to go to the Neurologist this morning to have them read the MRI results and explain what has been going on for us. She took the MRI results and went through them line by line and explained everything. Things mostly look good! Praise the Lord!
She said that there are no tumors, clots, or signs of stroke in the brain. There is a “slight simplification of the gyral pattern” in the brain. Which means that the folds are not as complex as they could be, but the doctor said that could change. The main core of nerves running from the brain are all fine! There is a lack of myelination in the brain (fatty insulation around the nerves that help send the impulses), but that could develop later too.
We are going for blood work next week for genetic testing for Lissencephaly. If Rebekah does have this disorder, we may be looking at seizures in our future. They will also do some metabolic testing to look for enzyme deficiencies. She may be deficient in some enzymes that help her break down her food to produce the energy that is needed to help her grow. Certain enzymes can be supplemented. She also ordered another CT Scan for the skull. Her soft spot is already very small and she is concerned that the plates in her skull have already begun to fuse. If they have fused, we will have to do surgery to open them so the brain will have room to grow.
Rebekah will go back for another MRI at the age of 1 year so they can compare the growth of the brain, the gyral patterns, and the myelination. We will go for another check up with the Neurologists in 4 months.
The doctor said that Rebekah looked good in her physical development. She said that she is fine with head stability and other developmental milestones. She mentioned that she thought her trunk control was a little weak. She gave us a prescription for the Georgia program called Babies Can’t Wait. They are a program that will come and work with Rebekah and do some therapy with her to make sure she is reaching her milestones. Chris mentioned that Rebekah fights sleep SO hard. The doctor said that people with Lissencephaly do have sleep disorders – so that may be connected.
She also said that her crossed eyes are a totally separate issue, so we are keeping our appointment with the ophthalmologist on the 27th.
Praise the Lord for His work in Rebekah’s life. We are so appreciative for you and for your prayers for our family.
So, we still have a long road and lots of unknowns, but we know God has his hand on little Rebekah (and all of us).
So glad to hear that everything is pointed in a positive direction. God is good. Be thinking about all of you.