Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Sunday, November 22, 2015

It's the little things

Surprised I am posting so soon? 
Me too!!
I keep planning on going to sleep early and can't shut my brain down. 
Alex had a jam packed week. Wednesday he went on a date with Miss Elizabeth his "girlfriend". She has been a bright spot to so many dreary hospital days. She has been great to visit him so much. They went to lunch and to a movie. Alex had a ball and said it was really fun to be with Miss Elizabeth when we didn't have a lot of crazy stuff going on. We are so lucky to know her. 

Alex also got to go on a guy date with daddy.. They went to the Jazz game. It was a pretty close game which kept it interesting. 

They got some pretty rad hats. 

While the guys were gone the girls went shopping!! This is not necessarily my favorite event with the little girls. Ry and I could do some real bargain hunting if we didn't have the three short people in tow. Mine are the crazy children running around and getting static hair from crawling through the racks. I cried uncle after two stores.. We were on the hunt for Pea coats (not sure if you spell it that way.) Family pictures outside...I want darling coats, hats, gloves, and scarves. But not at the expense of my sanity.  
Blood draws Thursday morning took us to the hospital in our pjs. By now nobody really cares. 
I feel very sneaky when I make smoothies May will eat and they have spinach and other healthy things in them. She usually won't go for anything green.. I tell her she gets two options eat it or starve. Two-nagers, you just have to trick them.

 Both Alex and Eden got to go to the aquarium last week with friends. It was amazing. 

Jeff took me on a date to his LDS mission reunion. He was so happy to see people he served with. I have to say, I loved going. It's not like a high school reunion were I feel this immense pressure to be something I am not (skinny). It is being with people who had the same goal and purpose reuniting and sharing that memory and love of doing good.  

Saturday we did major cleaning. I always feel like there is so much to get done. We focused on the office. The kids did their jobs and then had a fun primary activity at the church. 
We killed the day by going to a wedding reception of a former Sister missionary that served in our area. The little girls thought she looked like a princess! 


Tomorrow starts the whole thing over...

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.

Monday, November 2, 2015

Long awaited

I feel awful that I haven't had an opportunity to update and that I have probably forgotten so much.
Gator is doing fantastic. His body is healing, slowly, but healing. 
There is a reason we are experiencing this all. I haven't been overly excited to be at the hospital this go around. 
On top all of Gators issues. This has been one of the most "popular" hospital visits.. We have seen three other transplant buddies and two heart buddies spend time at the hospital.. On top of that we have had three neighbors come up. I understand that PCH does a fantastic job making the hospital fun, but I would rather get together on the outside. 
Shirts haven't been a favorite with all those stitches, drain and monitors. So sorry every picture has Gator shirtless. 
His determination to get better, coupled with fun activities, has surpassed my expectations. This is physical therapy. He road this bike all the way back to his room.
With his Gator slippers on. 
Chasing him with his oxygen was the amazing Kristen. 
Why does this little man want to grow up so very fast? Two teeth.. They have been popping through. Four months old and already has two teeth. I think that is very early. I had to have a sit down with him. Begging him to quit it!! Slow down!!! But he just smiled at me. 
We don't sleep much.. 
Traditionally we visit Gardner Village to see the witches. I finally got the girls there last week. Just in time. 

We've also had dance parties and school parties/parades. There has been festivities at the hospital and trick or treating.. 

We even cheered a little. 
Now we are fine tuning the last bit. On Thursday Alex had a CT that showed the fungus has not gone to his brain, sinuses and is gone from his lungs, his liver showed healing in just the right ways. The biopsy they took of his liver was as it should be with post Fontan circulation. There have been some questions about his right kidney. We are waiting to hear if the inflammation they see is due to the fungus spreading there or if it has just been hit so hard it is "recovering" from the antibiotics and antirejection meds. They are also trying to make these medications therapeutic in his body. Also, if it is best for him to have these meds via his PICC line or start taking them in pill form. We can't leave until that is sorted out. He still has a drain too. It drains the fluid away from his liver. He could actually go home with that if everything else was as it should. 
A few little tweaks and torques and we should be right as rain. 
I feel more than ever that there is just not enough of me to go around. So having friends and family who have helped has been so huge. Thank you. I just don't know how I (and by I, I mean we) would  make it? So many of you have had a hand in the corn. (Let me explain) we had an awesome lesson in Releif Society today. Amber shared a story about the unity and care that she experienced growing up. How powerful it was to her that her community was small but so well knit together. They would grow corn, harvest together, shuck, boil, and cut and store it. All together helping. Then each person would get some. 
I am so thankful that so many of you have taken my girls, and little Ashy guy, brought dinner, vacuumed my floors, driven my carpool, taken a day to be with Alex at the hospital, brought gifts of joy, sent uplifting messages and thoughts, prayed and fasted, gone shopping for milk, and been amazing health care (I know you can't reveal yourselves..HIPPA) 
I hope the "corn" is a little bit of Homie love.