09AFTacoma's New Build....

Thanks Ladies!!

EDIT:

& Clemson

 

Wow John, can't believe I missed this update... I'm at a loss for words.

I will pray for you, the family, and the little one... God has a plan for everybody, just remember that.

 

My best friend works with children with Autism and Down Syndrome. Some of the results are amazing. Seeing the kids come in on the first day and then seeing them 6 months, 1 year, 2, 5 years later. You can see a HUGE difference. I know its bad news, but its not the worst news you could have. With some work, and some help from ppl who have been there, you could get to a point where you cant even tell there is anything wrong.

Read some books, visit some clinics. Its amazing what can be done with patience...lots and lots of patience.

My prayers are with you.

 

We have already started doing tons of research and trying to get everything prepaired for when he gets home. The wife has been a school teacher for 9 years and has worked with lots of kids with special needs, so with her helping at home and making sure he will get the attention he needs in school we hope to help him achieve everything he can. Its all a game of time, and only in time will we know if he will be a normal kid like everyone else or if he will know if he needs a little extra help. No matter what he is my little man and I love him more than anything in the world. I cant wait till he is old enough I can start teachin him how to play Golf, baseball and all kinds of other sports.

 

I read thru this post this morning and it has been on my mind all day. I honestly don't know what to write, but I feel I should let you know I'm thinking af you and your family and hoping for the best possible outcome. Take care of yourself and your wife, it'd easy to overlook your own needs in these kinds of times. Best of luck.

 

That is the best attitude ..Treat him just like another other kid and give him all the love in the world. He is a beautiful little guy!! Seems like he came into a great family.

 

John, give him all the love you can give and then some. They all are gifts from above no matter what conditions they have. You and mom have the right attitude and as long as the two of you continue forward with that it will turn out for the best. I wish you well.

 

Oh yea I forgot the little guy got his cirumsicion (sp) yesterday.. and he took it like a man.. they said he only cried for about 15 min off and on afterwards..

he is already putting it to good use.. he is a like a mini Pee Pee Sniper with that thing.. he started going on his new diaper as i was putting it on him and as i reached to save his blankets he turned towards me an caught me center mass soaking my ABU top

 

he is doing great.. 3 bottles a day and putting on weight.. i hope they up him to 4 bottles a day this weekend

 

Seems like little John is doing better!

 

Jeez, John. I just found this thread. I had no idea you guys were going through this. We will be praying and thinking of you all.

 

Thanks John!

 

glad the little guy is doing well. good luck with him and hope everything works out for the best. as everyone has said.. lots and lots of patience and love goes a long way!


take care!

 

Children are a blessing no matter what..God has great things for all of you and we will pray that you are sustained and strengthened my Him who is able...

My daughter was born at 27 weeks...they said she would never make and would be plagued by problems... She 14 years old now and runs with her dear old dad

 

We got good and potentially amazing news today!!

Good news is the Doctors are optomistic JR will be home by this weekend.

Potentially (sp) Amazing news.. a little bit of back story first...

Every doctor that has come into to do the various test on our little guy comes in does the test and either looks at the chart or is told by my wife or a nurse that he needed the test because he has Trisomy 21 "Down Syndrome" and every doctor that has come in has said either.. "Really?" or "Oh, I didn't notice anything that would give it away."

So today the foriegn doctor ( I only point this out because his accent is hard as hell to understand.. lol ) that broke the original news to us that his result came back postive for trisomy 21 ... was doing his normal heart, lung, yadda yadda checks that he does.. and he was talking to us and was like.. " your son is a very interesting case, while the test have come back postive and he shows very few phyisical traits and those that are their are not very obvious. Most infants with Downs' you can see them from across the room and just know that child has T21, well your for your son you have to look very close, he just doenst show the obvious signs."..

well my wife and I are both like.. so what does this all mean.. and he told us he believes he is a Mosiac Trisomy 21..

Which means... That the Trisomy 21 doesnt effect all his genes.. means that his Downs is typically very mild. What happens in a mosiac is the the T21 only effect some of the chromosones and those are the only ones that will be effected.. for example if the chromosones that are for his brain and organ development are not effected he will be baiscly normal mentally and intellectually.. which would be amazing. but also on the same note those could be the only ones effected... although he said because it seems that since he responds so well to us and his is progressing so well at eating which is challenge for premies.. that he is very optomistic.

So now when he gets discharged from the hospital we will be referred to UNC Medical Center for outpatient Physical and Mental Theropy and further Genetics testing.. Where they should do the "FISH" test.. and let us know if 1. It is Mosiac T21.. and 2. If it is what Chromosones where effected and which ones where not... ( Only 1% of Trisomy 21 cases are Mosiac.. allthought because of this new testing they believe that percentage will go up a little)

We are keeping our fingers crossed and sending up our prayers.. hoping for good news.

Sorry for the long read.. but i figured if i left it short and sweet i would get tons of questions

 

deff man congrats brother...

 

Great news!!!

 

Just got home from the eye Dr. and everything is crystal clear!!