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 13, 2008

In review

It seems like I have so much to write about lately that I don't know where to start.. We visited Orem on Sunday.. The food was fantastic and the company wasn't so bad either... My little sis was just two months away from being seizure free for six months and had an "episode" Dang it! No driving for longer now... Monday the kids and I ran around and did errands and hair.... Tuesday we spent a great deal of time at Taylor Andrews as the students will be doing a fund raiser this week for a support group we belong to.. Intermountain Healing Hearts... This week is CHD awareness week..Ryleigh and I made sculpty heart pins, we've been passing them out to friends and family..We took a few to the school, the pediatrician's office today, we left some on the table at PCMC, and Diane passed some out to the guys at Jeff's shop. CHD week is a great time to help get funds for research and to help our group get care bags together for families at the hospital.. Today Alex had a ped appointment and a developmental evaluation again... Dr. Mashkuri said he looks great. He is up to 17 lbs (15%) is 27"(25%) and his head is in the 25%.. He is gaining weight and everything is still on track.. She would like to wait until he is over the Lovenox and about a year old before we have his circumcision.. This will give him a nice couple of months to really get well. She wants to see him really pick up on his solids intake... I feel like we are starting over with his solids because he gags so bad, but we are going slow and trying new things. She is going to leave him on the Previcid until he is a year old too.. The developmental specialist says he is starting to catch onto things. There is still a bunch of work to do with his little rubber legs..He won't put any weight on them at all... But we will do exercises with him everyday to get him stronger and stronger... He isn't getting so tired anymore, so we can push him a little more.. I still feel like his incision sight must hurt him to put pressure on, because tummy time is out of the question. He bawled today when we put him on his belly... The MD thinks he should just keep trying everyday until he becomes use to being there..So we are going to try some shorter intervals... We continue to do well as a family and can't wait for the warmer weather when we can play outside...
p.s. No word yet on Princess On Ice.. But we for sure will let you know...

1 comment:

carolyn q said...

You are amazing and an inspiration to everyone you come into contact with. I feel very blessed to know you. Thanks for your hard work in the fundraising efforts. I am really pushing hard on the Engineering firms that I work with to also help the group out.
I am sorry that Alex is still not liking Tummy Time. Hope was the same way. Just keep trying everyday.
I hope that Ryleigh wins. . .that would be totally awesome.