The good news and the bad and the bad!?

Happy Cinco De Mayo!


Well today Gary and I went to Riley to visit Kaleb and to talk to the Genetic Counselor.
So first the good news....
We got to see them move Kaleb back up to the 3rd floor NICU today, very exciting and a big move for Kaleb, moving out of PICU to NICU means he is recovering well from his heart operation and hopefully getting the breathing tube out soon, like in the next couple of days we hope! Then on to just getting him fattened up! hehehe
And now the bad news....
He has been having some kidney problems ever since he got to Riley and they have had the gastroenterologist and urologist doctors keeping an eye on him, so today they tell us that he will have to be on meds for his kidneys probably his whole life and that they hope as he grows and gets stronger it gets better, but worst case is kidney failure. I think Kaleb tried to say "failure is not an option" today but with the breathing tube in his throat it was hard to understand him.

Lastly the Genetic counseling.....
Kaleb has Translocation Trisomy 21 or t(14;21) which means that he has 3 chromosome 21's but part of one of those 21's is attached to chromosome 14,this means nothing different for Kaleb he has Down Syndrome. This can happen two ways, one way is spontaneous during fertilization (it just happened) or Gary or I could be a "carrier" of the 14;21 chromosome and don't know it. The first way happens about 75% of the time and the second 25% of the time.
So we will be getting our chromosomes looked at in the near future. If it is one of us we could have passed it on to our other children too, so they will have to be checked if one of us is a "carrier", because it will increase their risk of having a Down Syndrome child also.
On to more fun stuff to talk about...
Kaleb was sleepy when we first got there but of course he can't resist seeing me and big news daddy was there too! so he got those eyes open pretty quickly to check us out. He was all wrapped up like a burrito and was wiggling around trying to get out(I think he wanted to hold my finger:) he likes that) but he set off the alarm and the nurse come running, she said he coughed and needed some fluid suctioned, an alarm goes off for that!!!!! Another gray hair for mom...lol
Not much else happened, we couldn't stay long today because Gary had to work, but it was a great visit,Gary hasn't got to see him since he has been at Riley, so it was sweet to see the two looking at each other and Gary talking to him.
So I probably won't be able to get back down there until Monday, Kimberly is home this weekend and I need to spend some much missed time with her . It is great to know that Kaleb is in such wonderful and caring hands there at Riley it makes it much easier to catch up on much needed family time and healing time that I need.
Thank you everyone for your continued prayers for Kaleb and our family.
In His name,
Ginger