Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Friday, January 11, 2008

The move

I know that you will think I am totally crazy as I explain this but it has happened before (twice) Alex is having a great day today and loves playing with toys and reading books.. They have these funny red chairs that sit them all the way up and he likes to watch all the hustle and bustle of the PICU.... He got out his art-line today.. He also kicked out an IV, a new one was placed, a little later it went bad and the versed burned his skin... And the bigger news...He moved to a bed space out of heart land and closer to the doors....He doesn't like it if you take him right up stairs, he likes to acclimate to the new space before he goes to a higher elevation.....It's weird I know, but he wouldn't stay up there if they took him right up...So I think we are getting closer to getting well... I still haven't asked too many questions...(don't wanna jinx us) anyway our little heart friends are having a rough world... We know we ask this a lot of everyone, but please keep them in your prayers at this time... Their names are Issac and Rhett... Good luck boys... you need the good vibes for a little while....Brynn


Anonymous said...

I have a strange request. When we were in the PICU last year we met a little girl, I think with HLHS. I can't remember for sure. Her name was Devin Kirk. Her parents were Shane and Dana. If you see them or see their name on the whiteboard will you please let them know about Intermountain Healing Hearts and that we think about them all the time?


Anonymous said...

It’s good to know that Alex is working on an exit strategy. I know you guys would like to get out of there, but if you’re still around on Tuesday, Ashton has an appointment with his cardiologist in the afternoon. I’ll bring Ryleigh’s blanket when I come.

Take care,

Anonymous said...

Thank you Brynn......

Things just stink right now, but they will get better. I just know it.

I am so glad that Alex is doing better. He is such a precious little doll.

We are keeping you in our prayers that you are home soon.

Many loves,
Pam and Rhett