Since our last blog Jaylie has been doing well. Jaylie is growing, maturing and has been seizure free (yay!)! To date the vigabatrin has done an excellent job of normalizing Jaylie’s EEG patterns. Jaylie's daily medication intake has been dropped to only two medications a day (not counting prescribed vitamins and such ), which is awesome seeing how in December we had 11 daily prescriptions to administer! The routine number of Dr’s visits we attend has been cut down from 3 times a week to monthly and even quarterly for several of the 8 + Doctors Jaylie is currently being seen by. Right now the plan is to continue the vigabatrin until June, slowly introduce zonisamide back into Jaylie’s system and then continue on the zonisamide after we stop the vigabatrin in June.
Jaylie is still not eating regularly orally, but is eating very tiny amounts of whatever we can get her to eat. We are making progress slowly.
Jaylie is starting to get up on her hands and knees and rock around, she has become a lot more vocal and likes to move around lot though she has not become mobile yet. Jaylie sees an occupational therapist twice weekly to help with movement, oral feeding and development.
Jaylie has lost a little bit of weight, which has caused per pediatrician to become concerned and so the pediatrician has bumped up Jaylie’s daily calorie intake. It is not a major weight loss, just something we are keeping our eye on at this point.
Jaylie has had to have a couple follow-up EEG’s and one MRI over the last couple of weeks to monitor her brain activity while on the vigabatrin. The EEG’s have improved and the MRI did not show any ill effects from the vigabatrin. While reviewing the MRI results, the neurologist noticed Jaylie’s hippocampus (part of the brain that controls short and long term memory) was not completely developed which is concerning and can cause developmental problems if the hippocampus does not develop completely. The neurologist is not overly concerned at this point but is concerned none-the-less. Part of the underdevelopment of Jaylie’s hippocampus has to do with her being extremely premature and so the neurologist is going to do another follow-up MRI in 6 months to check Jaylie’s brain development again.
Please keep Jaylie’s developmental progress in your prayers. We have a long way to go and many more years of work to ensure Jaylie has the best quality of life possible. Also, my father (Michael) was diagnosed with stage 3 colon cancer in Dec. He underwent surgery in Jan to has a cancerous mass removed. He is recovering well and will be staring chemotherapy in an effort to completely eliminate the cancer from his body. If you would include my dad (Michael) in your prayers as well we would appreciate it!
As always, thank you so much for all your pray and support! We would not have been able to make it to this point without your prayer and support. Thank you!
Nathan, Kristina and Jaylie