Friday, January 24, 2014

Eye appointment

A had his eye appointment today and everything looks good. His lazy eye has gotten even better. Looks like both of his eyes are now tracking together. They also checked to as  if he needs glasses and he does not need to be seem again until August. They want  keep an eye on him due to many different medicines he was on the first few week  of  his life. And  the many ,many x-rays. I admit  the large amount of x-rays he had to have do bother me a lot :(.

Looks like his medical stiff is going to cost us an extra thousand this year cause he is going  hit the maximum out of pocket again this year. The synergis shots along can possibly hit it. He  is getting one ever  eyes are four thousand a pop! We are responsible for twenty percent of that (plus the copy which we will full fill that with one shot).  So that's about eight hundred a shot, we are getting s one financial support for it thankfully. Otherwise hmmmm ouch! Though part of the medical stuff will hit next month at his cardiology appointment.

A after the eye appointment. They had to dilate his eyes and he refused to look a me and take a picture. Acting all Joe cool I suppose.

Tuesday, January 21, 2014

I HATE CHDs another little heart warrior who I have been following for several month  died last night. Heart is broken fir her family. Babies should not have to go through that. They should grow an  love an  not be in pain an  die before there first birthday. It's not right.

Saturday, January 11, 2014


Sorry for the lack of updates. Not much has been going on. A is doing well he is growing yay! Still just on pediasure. We tried to decrease the amount he was drinking but that month he did not gain any weight so back to just it, no milk. He is up to 21pounds and 7 ounces.  Saying a few more words but is still much more explicit with his hands over his voice. I know he understands just doesn't say much.

He has a cardiology appointment in February. Hopefully they are happy with his progress and with his heart and growth. Because sometime this spring or summer he will need to have another operation. Can't hold this one of forever. The small hole  in his neck has started to leak more and its pretty yucky. But can't deal with it until he is all cleared by cardiology. So waiting game on that. We see the eye doctor in a few weeks feel confident about that appointment.

Let see we have not done much since my last post in November, since he is on synergis once again we Hhave not been going out much. The bugs around here are really bad quiet a few heart kids have been hospitalized due to the bugs. I  one of those mom's who goes overboard in wiping down the cart before he goes in there.

A has a new behavioral thing that is driving  this mom crazy! If I leave him for too long he cries so much he throws up.. and  does it often. Just what you want a kid who is way behind in growth to do *face palm*. That has been just a little bit stressful ok more then little. Gotten  to the point  that going to the bathroom or taking a shower is stressful . The pediatrician'  idea to help stop it so did not work! Said to make  him sit in it for a bit before cleaning  him up. Yeah well he just plays with it and makes an even BIGGER mess. Now everytime he starts crying big brother goes running from the room yelling I don't want smell the throw up! Funny thing it usually strawberry pediasure so it doesn't smell that bad. Though hate to think how big he would be if he was not doing this meh. Hope he stops this soon for all of our sanity. Has made bedtime oh so fun.

Well that's about it just going to end this with  pictures.

Shows how small he is.

Signing at the restaurant after Christmas.