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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.

Tuesday, May 5, 2009

a lot to chat about

We've had a bunch going on lately, so much so that I will just give snippets of the good stuff and continue to repress the not-so-good..LOL.. There isn't anything that is not so good. We met up with a new heart friend. She flew in for Women's conf. and it was like we had known each other for years. She also brought us some fantastic cup cakes, I need to visit the store. YUMMY.
Yesterday Gator had his limited echo and visit with his Cardiologist. We got better news. It seems that the Dig is working and has slightly improved the function of his heart. We are back on track for the Fontan. We do need to bulk up the dude. He needs to be at least 15 kilos so that he will recover faster from surgery. What a relief. I was really nervous for this appointment. I started freaking out about it way too early. Now I feel totally drained and I am sure it will take a few days to get myself back... While up at the hospital we went to see baby Grant. Gator is two, so now he can go back into the PICU with me. He watched things very closely. I am sure that he knew this place and could remember the sounds and smells. He wanted me to hold him the entire time we were back there. He loved seeing baby Grant. He kept saying "BEEBEES"! He also told him that he needs to get home and get better so that they can have a play date. Grant said he would do his best. Thanks for checking in on us....

8 comments:

Lacey said...

glad the news was good, thats always nice. It sounds funny that he needs to bulk up, he's such a chunker already.

The Taylors said...

Good News is always a releif, I get so worked up for Kylie's appointments also. It is so hard to function until you get the results of the echo. Glad things are improving. Kylie's appt is on Friday so hopefully we will get the good news also. He is such a cutie pie! Yes and bulking him up I have figured out no matter how much our sweet heart babies eat it is never enough.

The Curtis Family said...

That is great news! As much as I try not to, I always get worked up before Ethan's cardiology appointments. I think it just comes with being a heart mom. Also, I can't believe that they want him 15 kilos. Thats 33 lbs!! There is no way Ethan will make that, and his MD is tentitavely planning his Fontan for this Fall. Is Gator even close to that weight? If so, great job (and give me your secret)!! Take care!

---Allison

Christina said...

Yea for the good news. As for the bulking up, I hope he like avocados and cheesecake! :)

Love, Hugs & Prayers,
Christina and Family

Kyle and Alli said...

It was so great to meet you guys yesterday! I did not even see the sweet bracelet until later and I LOVE it!! Thank you guys so much for stopping by and coming to visit. Gator is simply precious!

Lance and Raegan said...

What I am constantly in ABSOLUTE ENVY of you for is how you seem SO HAPPY AND UNSTRESSED about everything. TO hear you say you were stressed about Gators appt just seems unreal because every time I see you I get the happiest, cutest, funnest, unstressed MOM and FRIEND! YOu amaze me with all you have on your plate and all you do all the time, and the great attitude you ALWAYS have.......seriously, you are one of those little angels that god sends to take care of everything and everyone and you make everyone around you happy.I love you and I AM SO GLAD that your appt went well. GO GATOR MAN!

Megan and Alyvia said...

Yay for good news! We still pray for you guys (: Your Gator sure is a cutie!!

Andrea said...

Hooray for good news and Gator progress. That is awesome! Hope your cute family is doing well!