Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, March 10, 2008


It was a big happy day for Alex... We had a very early cardiology appointment today..It seemed even earlier with the time change...I don't know if you all feel it, but we do, this will take a little getting used to...I will tell you about things as they happened there..First we had and x-ray...His lungs looked awesome, his heart size looked good the only little thing is that his left diaphragm is raised. It was explained to me that his diaphragm helps him breath and take deep breaths...So this being raised will need to be watched and monitored, but is doesn't seem to be a source of scare. Then we went to Echo. He was such a good boy and helped Evan hold the wand while they took pictures..The Echo looked great he has better function, he still has mild to moderate leakage from the tricuspid, but this is another thing to just watch and monitor, if it doesn't seem to make his heart work super hard it isn't horrible, he also had little to say about the pulmonary artery, so no news is good news to me...They still see the blood clot, the worry is that it will break apart and a piece will find it's way to his head and cause stroke and seizures, but so far it is not growing and doesn't seem to be giving him infections so we will just watch it for now.... Then we visited with Dr. Su.. Who said most of these things and also said we can go off of his Lasix in a week and he is done with Previced. When we are done with Lovenox we are done and I think there is only one or so more Synigis shots left....He will stay on asprin and Enalipril, but TWO meds I can live with that....And the best news....Alex gets to be free from his leash...That's right he can go off of his O2's in the day and will still need it at night for a little longer..This is really convenient because our handicap sticker expires tomorrow...No more lugging around that heavy tank.... So if you can believe it we are so stink'in happy... For the most part this was a very positive appointment and we will just keep moving in that positive direction.. He meets with Suzanne, his developmental specialist on Wednesday, she is bringing a PT so hopefully can get jell-o legs using those feet and legs for something other than toys.... Thanks ever so much for the thoughts and prayers... We will certainly be posting after Wed. and of course Friday when Ry goes to see the Princess's Ice skate..... If you want me to take anything to the Pearson's, we will be seeing them this weekend at princesses... I would be happy to be the in-between if you'd rather not mail...Thanks again..The Homers


Jennifer said...

WOO HOO! Get that oxygen yourself, sweetcakes!

Andrea said...

Yeah! I'm am so happy for you to not have to carry around the tank! I have to admit it was nice having the Handicap parking pass thought when we had it. I'm glad the appointment was a positive one!

And glad about the lasix too!

Fenrisar said...

See Here

Heidi McMillan said...

What GREAT news. I am so excited for you guys to be off so many meds and most importantly off oxygen.

carolyn q said...

What an awesome visit you had today. I am happy that Alex is doing so well that the O2 connection will be a thing of the past during the day and will only a short timer at night.
Have fun at the Disney Princess event! Give Jen a hug for me too.
Heart Hugs,

jenica said...

yay for it all!

berrymom said...

Yay! I am so glad that Alex is doing well.