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.

Wednesday, February 6, 2008


We went our cardiology follow up today.. It went well..They did a chest x-ray, it looked good and drew some blood to see if there were any infections.. It came back negetive for infection. They would still prefer us to be on the 27k cal formula, and they don't want ot start weening off oxygen yet, that's okay for a little while longer. I want him to be off it before he crawls though. No new things to report wich is nice for a change.. I may be able to write about new teeth in a couple days.. So we seem to be on the road to recovery and he seems to be getting back into his old routine.. He also started like solids a little more without totally gagging... It took us forever to get to the hospital this morning.. when it usually takes around twenty-five to thirty minutes, it took nearly two hours...YUCK!!! Good thing Jeff came with me and we drove the truck because I don't drive well in the thick white stuff... The Florida Homers called and said it was 80 at their house... LUCKY-(think of that as sounding like Napoleon)
Ry said the funniest thing today...She has been very clingy to me.. She needs help with everything. She won't go into a room without someone with her and she really hates going to the restroom alone... Well today she darts for the bathroom and shouts "I need a little help mom!" so I get up after her and she is already sitting on the potty when I get there growling up a storm... I look at her and in the middle of a grunt she says "Where the heck's my magazine" I guess she needed a little reading material while she finished up her business. I tried to control my laughter but I finally ended up on the floor rolling.. The only thing I could find was the 'Friend'... It all came out in the end..HEHEHEH...
And our newest and funnest thing (is funnest a word?) Alex says Dada..Yes our little man decided to make his first word Dada... I think Ry's was Hoooooot.. and NO! I tried to get him to say Mama, he won't....
p.s. I think blog spell check is off.. I can't check it.. I am by far the worse speller ever.. I believe you are not truly creative unless you can spell a word at least three different ways....SORRY


Lance and Raegan said...

Oh my gosh, she is so funny. I love that she wanted a magazine. Maybe if I give Ellie one she might actually use the potty. My kids both said DaDa first but we all know its just because its easier. Glad to hear Alex is doin well.

Andrea said...

I'm glad Alex's appointment went well and he is on his way to recovery. Thanks for the updates.

Joni said...

Glad to hear Alex is doing well and some "regular" baby stuff! :)

PS Your Ry is a character, I was laughing so hard!

Lance and Raegan said...

Happy Birthday to You
Happy Birthday to YOU
Happy Birthday dear Brynn
Happy Birthday to YOU!!!
(Is a day late so terrible? Thats actually early for me.) Hope you had a great day yesterday.