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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.

Tuesday, November 17, 2015

A rather big catch up

I had a big beautiful post already to publish... It disappeared.. 
So here is a catch up. 


Physical therapy is so much fun. I took May up with me on a couple of days. It made me feel like I wasn't putting such a burden on my neighbors and family. Eden spent some time with daddy at work. We made things work the best we can. Eden has struggled the most this go around. She keeps saying she doesn't get to see me that much. She also started sleep walking. She seems to be a little more feisty with her siblings as well. I sure hope we can help her resolve some of her feelings. 
The gym was a huge hit for everyone.

It's a friend sandwich at Ry's activity days. 


I bought these Amber beads for Ashy. The jury is still out on wether they are effective or not. 
Papa spent a day up with Alex. They had a riot doing puzzles, reading, Legos, and fun. 
Alex made it home. He has had a lot of appointments and draws and follow ups. It has been busy.. Plus they are off track. Perfect to have these next few weeks to heal. 
Asher's little teeth have finally pushed all the way through. He used me as a teething ring a couple of times and drew blood. I Yelp in pain and he just looks as me like "So what's the matter with you?" I have literally reverted to pre pubescent status.  Nobody better even look at me wrong or brush up against me. Or I will do one of two things. #1 burst into tears and sob #2 be forced to unleash my ninja skills on you. I decided maybe it was time  to do ANYTHING to save myself, my personal well being was at stake here. So we started solids. 
We got the go from his pediatrician too. 


We were supposed to be in Disneyland and Lego land last week. With our hospital stay we just needed more time to heal. The kids were pretty disappointed that we had to push our vacation. Until daddy came up with an awesome plan. We decided to go to Heber for an staycation. It was a blast to be together. We went to the pool, ate yummy food, visited the Heber Creeper train, and went shopping at the outlets. I even made a dent in my Christmas shopping. 


We just can't get enough of Ashy, especially in his chair. 




I bet you have noticed MayLee isn't wearing her oxygen. I have been checking her Sats and she has been keeping them up enough to have it off during the day. I don't know how long that will last as we move into respiratory season. Hopefully she can continue to stay healthy. She still needs it at night. 
Alex has been to 3 big appointments. Last Friday he saw Doctor Meyer. She looked at his incision and removed his drain. All checked out and looked good from his surgery.
Yesterday he saw his transplant team. He had an echo and labs. Everything looked great with his heart. Today he had an MRI and had a follow up with ID or Infectious disease. His MRI showed that his kidneys look normal and his liver is healing like it should. We are waiting on one test, everything else checked out great. 

This could have been really bad. The survival rate wasn't that great. But... Alex kept working hard to get better. He rested when asked, he ate a ton, played and was spoiled, and also did therapy that not only looks hard and painful, all while feeling emotionally spent.   
He is rewarded by healing faster. I couldn't be prouder.  


Ry, Eden and Ashy all had well checks last week too. The girls are growing like weeds. Ry grew two inches in the last three months. It's no wonder she wears a  ladies size 9 shoe. I bet she will be taller than me. I can't keep Eden clothed. It is an absolute blessing to have such wonderful neighbors willing to pass their hand me downs to us. Then MayLee gets them next. 
Ry went to Ortho yesterday and got red and silver bands. Her teeth are looking fantastic. Ashy isn't the only one who is teething. Both Ry and Alex have a mouth full of teeth coming in as well. 

This week Alex has a follow up story about his transplant. It will be on Thursday Fox13 at 9pm. They filmed at school with all of his friends. 

There are a couple of other fun things happening in the next couple of days.. 

Now if I can just stay on top of it all.
























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