Neurology 101

We saw Jack's neurologist last week to discuss the MRI he had done at the end of October. We discussed the different areas of Jack's brain that were affected by his grade 4 bleed. I really like our new neuro. He was drawing diagrams, breaking out his full color pictures of the human brain and very interested in answering my questions.

First question (and the main reason for the MRI) was to take a look at Jack's Corpus Callosum. As explained before, Jack was suspected to have Complete Agenesis of the Corpus Callosum (meaning the structure that connects the two hemispheres of the brain is missing). However, the MRI reveled a different finding. Jack's Corpus Callosum is formed normally in the front (anterior) and is thin (hypoplastic) in the back part (posterior.) So, this changes things on paper but doesn't really affect us in any other way. So a new diagnosis would be Hypoplasia of the Posterior Corpus Callosum. This was most likely due to the trauma of being born at 25 weeks.

We discussed his PVL (damage due to grade 4 bleed), ventricles, and other areas as well. There isn't anything new or changing and I didn't see or learn anything I haven't before. I appreciated the time he took to answer my questions. Not all doctors are willing to do this.

We talked about Jack's spasticity. He disagrees with the use of Botox in several locations at once. I repect his opinion, but we are still going forward with the injections at CHOP in February. We discussed surgical options like the SDR or the baclofen pump. Both are neurosurgery and luckily we are VERY familiar with our neurosurgeon. This was just a discussion -- we are in no way ready to put Jack through major surgery at this time. We will keep our minds open and continue to ask and discuss everything with our specialists.

Jack has an EEG scheduled for December 7th. If there are any willing participants I sure could use a hand at this appointment! These tests bother Jack so much and he needs restrained. I am hoping daddy can come with us especially because I do have to watch how much I do physically. Jack's medication levels look good so we did not increase his Tegretol at this time. He's also been seizure free so we're doing well at the moment. The neuro told me to call about 3 days after the EEG to discuss the findings. At this time we will increase meds if indicated on the EEG or we will wait until we have our 4 month follow up.

Yesterday I took Jack to get casted for a new pair of DAFO braces. I could not believe how BIG the casts looked!!! Jack picked dinosaurs...again....but this time I chose green padding and strapping instead of blue. He was also measured for a hand brace as well. Those only come in gray...we should be picking everything up in about two weeks.

This afternoon we have our 6 week follow up with the eye doctor. 6 weeks ago the doctor decided to give Jack a break from his glasses to avoid over-correcting his eye muscles because they were in a pretty good position at the time. I feel Jack will be in glasses again perhaps just not as strong of a Rx.

Is everyone ready for Thanksgiving? We are celebrating at home, just the three of us. Then we may go visiting or have visitors...it's all fine with me! I am totally flexible.