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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.

Thursday, December 5, 2019

It feels a bit like life on repeat for more than just me.....

I am sure we have completely freaked out some of the hospital staff...

I tried to find a picture of Alex after the Fontan, maybe later...

Recovery has been moving along... He has moments when he wakes up and is scared and we calm him down the best we can by tickling his arm and talking about what he has going on so he is familiar with the strange things coming out of him. Seeing him like this, smelling the same smell of soap and tape, being in a dimly lit room with the bubbling drainage tubes and the machine beeps and alarms.... yeah, it feels...... blah..... hard, similar, but not hard because we love everyone here... does that rambling even make sense... it totally does in my brain.

know that we are doing well... those prayers in our behalf have been felt. Every encouraging word, via text, call, message, DM or what have you is appreciated....

his incision looks amazing!!!

5 comments:

Cindy said...

I'm glad recovery is going well!

Unknown said...

Love you guys! Our thoughts and prayers are with you!

Unknown said...

From the Earl's!

cici said...

Big hugs for your
little guy.
Healing prayers xo

Karen Groesbeck said...

Just love your beautiful children. They are blessed to have you as their mom!!! Prayers for his speedy recovery.