hey all, wow once again its been a while, no excuses time just seems to pass so quickly thru the day and then its bed time. hope everyone had a wonderful holiday and is having a great begining of december! we have our deco up, our tree up, i LOVE christmas, my all time favorite time of year and i tend to get a bit overly into it. :)
for thanksgiving i gave zach some baby food in his formula mixture for his tube feeding, it was a first but there were no bad reactions to it, it flowed a little slower, but nothing major, i have been thinking alot lately about a blended diet for zach where he would recieve more "real" foods, i want to discuss it and learn more with his nutritionist soon.
earlier this week while tube feeding zach he decided to get up and walk away....and when i say walk i mean RUN! couldnt catch him in time, he ended up popping his fully intact button full of water in the balloon out and we had to re-insert it, needless to say that was a first....he is such a wiggle worm now!
Another first for zach was he got to see Santa!! we hadnt done it in the past, either because of a hospital stay or fear of germs, yep im one of those that would bubble up my kid in a bubble if i could to protect him from everything, i know it seems extream sometimes, and im working on being better.but anyway back to santa, he didnt scream or fuss, but wasnt thrilled to be sitting on th ebig dueds lap either, he wanted to get up and run around. it was so awesome to see all the boys up with santa though, they all still believe, i know part of it is the autism, and part of it is the fact that they dont go to public school so they arent hearing other kids burst their bubbles about santa not being real, as long as they choose to believe i will go right on along....
before i end this i have a few prayer requests, one for a sweet baby born recently in a nicu waiting for a surgery to remove fluid from her brain, she also has a eye defect where she will be at least partially blind, she is having heart issues and has a cleft palate, they are waiting for genetic testing, a year ago her mom gave birth to another daughter born with congenital diaphragmatic hernia who lived only 28 days, please pray for peace and understanding for this family, her name is Ellie.
the other prayer request is for a beautiful nearly 3 year old girl named Liviana she was also born with congenital diaphragmatic hernia and survived it! she was doing wonderful until a few months ago she began to get clumsey and having probles walking and playing mom got her in to see aneuro and after a mri of her brain they determined the problem, that was the good news, they have an answer, however its one you never want to hear, its one that isnt cureable. here are the words from her mom's mouth...
"Liviana has been diagnosed with a rare genetic disorder called Leukodystrophy. There are 2 dozen types of LD and we are awaiting tests to determine what type she has. The hard part....LD is not treatable. It is a progressive, degenerative brain disease. She is basically losing the white matter on her brain. I am sure I will talk in more detail about LD later but that is the basics for now."
she says she has showed rapid signs of regressing already. its heartbreaking, if you can please go to their blog and pray for livi, thank you.
http://livianasjourney.blogspot.com/
thank you all so much!
No comments:
Post a Comment