Wednesday, December 10, 2008

Once again...

I am a blogaholic lately......but it helps so bear with me. I have lots to share on Jude, but I will do that tomorrow because I would like to take a moment to reflect on some of the emails I have received from other parents suffering with their childs brain issues. I hope the parents don't mind I have posted these excerpts, but I will not list names. I am so inspired by these parents. They have strength beyond measure, and inspirational children. I am in awe of everything they do for their children, and how they never give up hope!!! They are my mentors, and I am so happy to have heard from them. Here are a list of comments I have received from others.

"stay encouraged.. . Our youngest daughter only has her her right brain and no evidence of a left brain at all and no corpus collesum and had a in utero stroke on the remaining brain there... she sits finally and is starting to roll over a lot, smiles, says dada and baba and squeals and makes all kinds of sounds and is such a wonderful delight and very smart :) The brain is such an amazing part of the body!! "

"Sounds like Jude is actually doing well. Things can always be worse, I think you probably realize that. The brain is so amazing. My daughter had a stroke at 9 days of age & is missing almost all of her occipital lobe, her temporal lobes are damaged, little bit of the frontal lobe and some damage in the pons she is 30 months old, has spastic quad cp, microcephaly, seizure disorder, cortically blind, gtube fed cant roll, bat at objects, sit, stand, crawl & non verbal but there are kids worse than her that have less damage & vice versa. It's crazy actually. "

"Today is my ____ 7th birthday !!!! No big deal, you think? When he was born , the prognosis was that he would never live long enough to leave All Children's Hospital. We brought him home on his first birthday. Yep, he stayed in the hospital a whole year. Many re-admissions later, he is home and as healthy as he gets. (weaned off his seizure meds now) . We were then given a life expectancy of 3 yrs, after his 3rd birthday, then we were given a life expectancy of 5 yrs. Now we are told , "we only expect him to live to mid-teen years". I was told he would be deaf, blind and mentally retarded. Now he walks and talks, he plays and goes to school. He has a quality life. No, it's not the life that many other kids have, but for ___ it's a wonderful life. He has many people who love him and many professionals who wonder how he has survived. I know, I Believe in Miracles ! My message to you is , never give up hope"

"Please don't despair. These children will surprise you time and again.My own son was nonverbal and then one week, boom. Words. Then sentences. Now he cracks people up."

"Fast forward to now he is still with us, he goes to school and yes he does have his problems. He has micro,ventricularme galy,seizures, is blind, is delayed developmentally, has GERD, is tube fed, and the list can goes on.They, the doctors don't know why he can do somethings with the brain damage that he has. He can say some words, he can sign some words, he now can sit for up to 3 mins by himself. He is the only kid in his class who participates in music class. I could go on with what he can do but he can do things.Our motto is as long as he keeps fighting we will keep fighting for him. We will do anything for him. He is loved and he loves us back."

Thank you so much for your great words!


Marla said...

What great encouragement from those parents! I just found your blog from JM and noticed that we live in the same area (I'm in Burleson). Your family and precious Jude will be in my prayers.

Anonymous said...

Hi there,
This is TurtleMom from the Ventriculomegaly babies forum. I wasn't aware of Jude's problems and thought everything was well. I am so sorry that he has began to seize. He has come so far and is developing well. I have to put more faith in what the Neurosurgeon said about the fact that they never really know what the prognosis will be.
My daughter has the opposite problems (macrocephaly & hydrocephalus) and she is severly visually impaired. Jude will be in our prayers. Parker sends her love!
God bless you all!
Amy Hendrix

Bronx Cataldo's said...

Jennifer,Mike,Em and Jude.
You say we give you strength. Our strength is like that of a circle always going around but it comes back to us in our time of need.
Keep fighting Jude, we do.