Thursday, August 19, 2010

getting better....

The boys are still sick, but don't tell them. Night time is rough with a lot of restlessness, coughing and oxygen alarm beeping but during the day you would hardly know it. They are getting their appetites back, playing hard and looking adorable as ever!!! But don't take my word for it:

Nicholas jabbering away on another "phone"

I just can't get enough of it, he loves to look for my reaction
as he finds yet another "phone" and puts it against his ear.
If you could only see Alex's face here but let me try to translate:
"you DO realize you are talking to a caterpillar, don't you?"







Alex looking as sweet as ever.
He's working so hard on sitting up all by himself
haven't quite gotten the fixing our other leg yet
mama was slacking here
but were getting there!!!

look past the ugly white medical tape
its the only thing that sort of helps keep 
the oxygen in place and doesn't make
his poor skin break out....





Alex saw his cardiologist yesterday just for a routine follow up. We talked about his recent illness and he listened to him and agreed sounded like he has viral pneumonia. He had an EKG done and some other testing. They said he still has pulmonary hypertension but it IS improving. One part of his heart is still enlarged but he said he did not expect to see otherwise yet, that this can talk many months or even more to decrease but that its not getting worse.

He said the tests were indicative that things are continuing on course as he'd expect and does not recommend any other treatment. Alex will just need to be followed every six months for now. :) I really like his cardiologist and he is very reassuring without even be prompted. He said not to get discouraged about the illness and respiratory issues. He reminded us that the first year or two are the hardest with his lungs but it WILL get better. He said his ability to grow healthy lung tissue is directly related to his physical size so he's still quite small now but that as he grows, so will healthy lung tissue to replace the scarring. We needed this reminder as we worry ofcourse while we listen to his breathing and going through another pneumonia. We already have one year behind us and he's already doing so much better and we know is so much stronger than times past. We know things could be soooo much worse and we are grateful for how well he's doing and being able to get through this at home and not the hospital. Thanks to every one for the extra prayers for both boys speedy recoveries, we feel them working!!




3 comments:

ChaneyM said...

Hi Holli
Mary is kind of doing the same thing at night - alarms and congestion! She is fine during the day.
Look up Neotech for free samples of things to help his O2 stay in place... also for O2 sat monitor accessories and things like that. -FREE SAMPLES! I've gotten stuff from them. I'll look and see if any of it is stuff we don't use and pass it along to you. It is worth a look!

Leigh and Andy said...

I'm so glad to hear that the boys are starting to feel better! If I had a dollar for every time that Grey did the splits I would be a rich woman! :) My PT said that I should point it out to him each time that I fix his legs and now I can just say "fix your legs grey" and he does it himself...just wanted to mention that because we were (kinda still are) dealing with that one rambunctious leg!

Anonymous said...

How is it that every time I see new pictures of "the boys" they are cuter than the last??? It is IMPOSSIBLE for them to get any cuter!!!