The results from Ellis' brain MRI are in and we've been spending the last two days digesting what this means for our family. There are two damaged areas worth noting - the thalamus, and the area that processes vision for the left eye. The injury to the thalamus is most concerning.
The team believes that the right eye will compensate for any left eye impairment. The damage to the thalamus is different. It is on both sides, the right being worse than the left. The thalamus is responsible for "relaying" messages from the brain to other parts of the body and visa versa. And while other areas of the brain do a good job of "rewiring" after an injury, the thalamus does not.
The damage to Ellis' brain can be described as mild to moderate. The team was very vague as to what this means for Ellis. They expect some motor, sensory, and learning disabilities. They said that he will probably be able to walk, but will likely need assistance with some skills. What those skills are, and what assistance will be required, will only be revealed as Ellis develops. Some disabilities might be small, some might be big; there is just no way of knowing right now.
A couple weeks ago a doctor on Ellis' team handed us a copy of an essay written by a mother of a special needs child, here's a link to the essay: http://www.our-kids.org/Archives/Holland.html
Italy is no longer on our itinerary. Holland, we are on our way!
Subscribe to:
Post Comments (Atom)
I hear Holland is absolutely GORGEOUS in the Spring! All that new growth of tulips sprouting everywhere!
ReplyDeleteLove,
Dana
Faron Family,
ReplyDeleteEllis no longer needs ecmo so the odds of me taking care of him again are slim to none. I come to see him every day I work. His continuing progress amazes me. His strength is an inspiration. I am usually the silent blog watcher but I just had to post and thank you for sharing "Welcome to Holland." I will take Holland as well! God bless Ellis. I pray for his continued progress.
Shannon J. RN CICU
How beautifully put! With the strength that Ellis has already shown, we have no doubt that this news is a minor setback. Just another one of those bumps in his road that instead of spaced along his lifetime, seem to be all at the beginning. Stay tough little man!
ReplyDeletethe luchuns
Holland sounds like a lovely place, a place to learn from, grow from, and to share experiences with those who have journeyed there before you. Ellis is blessed to have a wonderful family that will be at his side celebrating each milestone he accomplishes! You, James, and Lilah are truly blessed to have Ellis in your lives to bring you power and joy to all the things we simplify and take for granted -- he will be there to remind of how miraculous the really are!
ReplyDeleteDear Christine & family,
ReplyDeletewe all have 'special' needs in our lives- some can be seen better than others,I hope and pray that Ellis continues to improve- Ellis is a very special soul..."we are not human beings having a spiritual experience...we are spiritual beings having a human experience." A..Pierre Telhard de Chardin... May God Bless you all and keep you safe...Kathy & Mike
Christine & James,
ReplyDeleteYour faith is such an inspiration to us all. Ellis is so lucky to have you both for parents. I know you will be there cheering him on through each & every milestone. My youngest cousin who had a very traumatic birth experience was expected at best to be mildly mentally retarded. She is now in medical school at KU. Keep the faith! Know that I am rooting for you & Ellis!
Lisa O'Hara
Christine & Family,
ReplyDeleteSo GLAD to hear news that he progresses and gets stronger every day.
Easy for me to say (not really, when my daughter "should" have cancer in her 20s), but do not worry about what lies ahead... worry never got anyone anywhere. Try to take each day as it comes. It is all any of us can do. And celebrate - every day.
I have a second cousin that probably should not have walked or talked... and through his mom's dedication, he attends high school, plays sports and will graduate this year.
Ellis is amazing... strong... beautiful. ANYTHING IS POSSIBLE... He is the LIVING proof. Believe.
Praying & waiting for more great things from E.