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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.

Friday, January 22, 2016

Friend types

May- "Mom, can we be friends?"
Me- totally!!
May- Can we be holding hands friends?
Me-(grabs her hand) Absolutely!!!
Then just because I love that we are holding hands friends we skip around while holding hands.. She erupts into giggles.
May- can we be snuggle friends too? 
Me-this just keep getting better!!!

Oh and by the way, I am not friends with teething.. I will take the baby.. But teething is definitely not my friend. Almost three on the top and four on the bottom and only seven months.. He is going to have a wicked gap.. 

Just because you can't see his Voodoo Baltic Amber beads doesn't mean they aren't there. He likes to keep them all safe in his neck meat.  



Friday, January 15, 2016

T t today...

It's been sort of an emotional day.. Remember how I reported a couple of posts back that Alex was in rejection. 
He had a biopsy today to follow up. He also had a loose screw.. Oh no wait.. A stitch that was coming out and was annoying him like crazy. It was like having a sliver that kept rubbing on his clothes and irritating him. 
It was actually looking really great today, but was still painful to the touch. 
And the results are in and Alex's biopsy was squeaky clean. I am floored and humbled..  He had some tummy issues on the way home, but plans to sleep off the rest of the anesthesia, which will hopefully take care of the nausea. 
I thought that this recovery room was particularly perfect for Gator.. Check out the ceiling tile.
Just one more week until his heartiversary... What an amazing journey and blessing to be here today. 


And so starts 2016

And just like that we are into January.. May turned 3.. She is getting so big so fast.. 

Practicing
First time blowing out lit candles.. She couldn't before because of her oxygen and open flame rules. Something about blowing up your kid just never sounded super fun. 
As you can see in the picture, Eden was back up in case May's blowing was not effective.

We call this look Asher's unijammies.. Or merman jammies. 
Sitting up all by his self. 

May chose Classic Skating for her birthday activity..we had so much fun. We snowballed, whipped a Nae Nae, skate or scootered, and played blackout.. Ashy also slept. 




Ry mustache you a question.. 
Little miss May had her 3 year well check and is doing so great. She is above average on her height and weight and has been doing so well on night time only oxygen. Her little rib cage is looking sort of poke-e-out-e so we did an X-ray, still waiting on the results of that. But with her appointment and dance and the. The X-ray, it just wears a girl out. 
















A serious catch up #3

The girls did such a great job in their dance recital. Eden performed in Suzie snowflake..


MayLee was so cute in Ellie the Elf.
Eden also amazed me by memorizing her line for her preschool program. 

I wrote a fantastic Christmas letter accompanied by a picture, sure didn't get them mailed out. There were not enough hours in my days during the holidays.. *sigh* there was effort. Just not enough I suppose. 
The girls in their Christmas dresses.


The boys in their Christmas church clothes. Asher sort of looks like Alex's vantriliquist dummy in this picture.. 
We braved the cold and the crowds to be with some of our favorite cousins to see the lights downtown.. 
Ashy helped wrap presents
Christmas Eve with the Clawson clan. One of my all time favorite traditions and one my children always write down as their favorite is getting pajamas delivered from the elves and eating downstairs by the fire on Christmas Eve. 
Ashy was plum tuckered out. 
I took no photo evidence that Christmas was phenomenal except this one of May who couldn't keep her eyes open any longer at 5 pm.. 








A serious catch up #2

Things kept going at what seemed like lightening speed. The girls had dance observation and I was able to see them prepare for the winter recital. 

On December 3rd Alex had his annual biopsy. The BIG one ...Da da daaaaaaa... And it turns out we didn't have all super news. His heart function and coronary arteries looked fantastic.. But he had C4 or moderate cellular rejection. This was something we knew might happen. You see.... We changed his rejection medications in order to allow his body to rev up enough to help us fight off the Aspergilliosis.. We knew that doing that his body might recognize his new heart and try to reject. Which is exactly what happened. There is no way to understand how that ugly fungus got in his body in the first place.... And so we had to be aggressive with it and attack it with all our might... After calling on my heart transplant mommy trust for wisdom, I felt better knowing that if we had to experience rejection, Cellular was the best to have. 

I enjoyed trying the RH selfie stick, maybe a little too much.



We took the kids back to visit the Festival of Trees and loved seeing so many awesome trees. This event is such a blessing to not only the kids in the hospital, it also helps us remember our little friends who are no longer on earth. It is a physical way to keep them part of our holiday activity and I love seeing these awesome trees. I also love the trees that are inspired by those who are fighting big battles. 

This is just my snuggle bug..

Dixie from donor services came to talk to Alex's class about organ donation. I hope the kids were inspired and put at ease about what happens. It has been such a blessing to our family.

Early morning blood draw. Everybody masks up so we don't catch the hospital sickies.