Julien’s Update 8/14

Thank you for your patience on waiting for another update as this week has been very busy for us. Julien had an occupational therapy appointment where they checked his muscle tone, his bottle feeding skills, etc. They provided some recommendations of where we should stretch him out since his muscle tone is still tight (around his neck and on his legs). This is something they like to keep an eye on for babies with HIE (loss of oxygen to the brain). They want to see him every 3 weeks for occupational therapy and then every 3 weeks for physical therapy as well to work on his muscle tone, etc. The big appointment of the week was his follow-up appointment with his neurologist. His doctor also stated that he still had some “tight” muscle tone in his legs and arms and that is something to watch. He also discussed the possibility of weaning him off the phenobarbital in 1-2 months after a repeat EEG is done on his brain. That EEG is scheduled for tomorrow, August 11th. The results of this EEG will take 5-6 days to come back and based on this, they will determine if this is enough data to make a decision or whether they will send us home with the device to do a full 48 hour EEG monitoring/test to gather more data on brain activity over a longer period of time. Patricia was feeling a bit emotional and asked the doctor what types of disabilities “could” develop (worst case scenario) as a result of HIE and he said “cerebral palsy or other developmental delays.” Patricia got very emotional at the thought of this….this has been hard on both of us but she has taken this pretty hard. The doctor said that there is a  “stem cell” treatment procedure being done (with success) in Monterrey, Mexico at the university hospital that we could consider. He provided us with the contact info of another family that went through this treatment and it changed their lives completely. We decided to contact that family this week to discuss their experience and we had the most amazing 1-hour conversation with them. We have done a lot of research on the procedure, the hospital where it will be conducted and the doctor that performs the procedure. There is no guarantee that it will work and we don’t even know if we really “need” to do it since Julien is so young and we don’t know if anything major is actually wrong. All we know is that we both want to give this a chance to possibly “head off” any potential problems in the future since it is recommended to do this sooner rather than later since his brain is still developing and forming connections. It is an expensive procedure but we know in our hearts that it is the right thing to do to give our little guy the best chance at an amazing life since he had such a rough start. Patricia has been in touch with the doctor in Monterrey and we are working on securing a procedure date and getting our little guy a passport:) More details to come. Thank you for your continued love and support of our journey with Julien….our miracle baby.

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