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, August 1, 2007

Today we took a stool sample to the Dr. and we are waiting to find out if Alex is completely over C-diff. I hope so, I don't like that stuff very much. He seems overall a lot better and is gaining weight. Our home Health Nurse came today and Alex weighed in at 11 lbs 7 Oz's. We found out the hard way how picky he is about food He can't just have the good'ol, huge, cheap, Members Mark Sam's club formula. He has to have room temp, bottled water, Similac with Iron, from the Nuk slow flow nipple. I guess he can be a little picky about some things. He also is learning to bring his hands to his mouth and makes cute little gurgle noises and smiles. We haven't heard him laugh yet but I think that will come soon. He is holding his head up well now and I think he is just doing so good. Ryleigh is still our adventure queen. It seems like she bumps her head or scrapes her knees daily. She loves to be right with me with what ever I am doing. In other news we are getting sod in the back yard on Friday. I can't wait to have the dust level to a minimum. I will be so glad when we are done back there. We are good and no news about the next repair is good news.....


Jenn said...

Wow! It is so good to hear how Alex is doing! He needs to come give Ian a little lesson about eating-- we just went back to the good ol' ng tube, and oh yes...the pump. It's good to hear that all these little things get better, and they do get stronger and eventually get to live like the cute little guys that they are! We won't be surprised or upset at all if Emily ends up a nurse, it is her job to flush Ian's tube, she can do it all by herself and makes sure that she gets to everytime. You just gotta love the enthusiasm of a 2 year old in the mix of all this. We are glad you are doing so well. Have a great weekend!
the Pearson's

Heart Mommy said...

Pearson's, It is so good to hear from you!!!! there is going to be a big picnic for all the heart kids and family here in Utah on the 8th of Sept..... I can give you more details if you ar interested.... We miss you guys... Sorry about the ng.. Is he still on o2's and just needs the feeding tube? I thought he was a nurser boy?????? Is he taking your milk through the tube? how the heck have you been??? Don't you think this life is sooooooo crazy....I MISS YOU GUYS>>>

Mike Patton said...

Glad to hear things are going well...all this heart stuff can be crazy. Until the final repair--hold on you never know whats next. The summer is going by way to fast, enjoy those kids! Brinley is talking and going a hundred miles an hour, I think were going to find her some sort of dance class or something to keep her busy. She is our joy!


Terry said...

I am so glad he is doing so good. He is such a sweetie. Thanks for letting us come help in the yard. So far so good! Talk to you soon!
Love you, Goodbye!

Quinney Family said...


We are always thinking about you guys and check the blog often. Alex and you guys hold a special place in our hearts. I really think he should come see Wyoming soon :-). We are glad that he is getting better and gaining weight as you approach the Glenn time frame. As you know from seeing Bryson right after his Glenn, it is not fun to see them have to endure so much, but a step back is helping them take two steps forward. You are in our prayers.

Eric Quinney