Sunday, November 20, 2016

Merry-Go-Round



Hello Friends!

We are sorry for the long delay between this post and the previous post. We seem to be at a spot in our family's life where we can enjoy being 'normal'. We are not out of the woods, in fact, we are still very deep in the woods, just enjoying an open field.



Yay! The boys CAN play nicely in the same room!

Bike helmets - the optional safety equipment when doing plumbing.

Micah reading to Zachary and Josiah

Dog duty- another bike helmet safety requirement



I love seeing Becky hold Zachary before bed.
Zachary is growing and getting taller and getting stronger. He is using his muscles and strengthening his core more and more every day. He is amazing his therapists each week as he develops new skills from the "playtime".

He is going to be starting preschool in the next couple months when we figure out which school will best fit his needs. The school district is already approved him qualifying for preschool as well as having a full-time nurse to be with him during school hours (major hurdle but Becky is tenacious!). The nurse will be our nurse that we have already hired to work with him at home! Yes!


Zachary 'playing' with his therapists.



Oh yeah, we are also moving. We are slightly crazy! We have decided that the house we are in will no longer meet our needs and so we had put up for sale and are closing the day Monday following Thanksgiving (11/28). We are also closing on another house simultaneously, which will be a bit tricky, but with your help we can do it. We are going to load moving trucks on Sunday and then wait until Monday to drive them to the new house. If you want a work out, we would LOVE YOUR HELP! Yes, it seems like we just did this so Lord willing, we will stay in this new house a LONG TIME!

Last week, Zachary had another ER visit. He started coughing and developed croup like symptoms. We did everything we could, but he did not recover so we had to get him to PCH quickly. After a dose of Epi and another steroid, he was sent home. We were tired the next day and a friend of ours found out an had pizza delivered to us. We are very thankful for that family seeing the exhaustion and meeting a need. We had another family bring us cookies and a movie.

Zachary is scheduled to have ANOTHER surgery on January 6th. He has a hemivertibrae (half a vertebrae) that is causing Crazy scoliosis. This one will suck for Zachary because he will be in the hospital for a few days and then most likely in a cast or stiff brace 24/7 for at least 6 weeks. Please pray for this surgery coming up.

I ask that you pray for a family whose son is admitted to the NICU at Phoenix Children's. Here is their blog. It makes my heart break knowing that these parents can't hold their baby boy right now due to his fragile state.

More pics since the last post...

Josiah wasn't a fan of getting wet until....


Revenge is a dish best served at full pressure!

This is a fun app.  Face swap

Guess who?!

STAR WARS HALLOWEEN!
Sanitation Duty
LOVE THIS SMILE!!

Monday, June 20, 2016

Thumb body is doing great!

Life has run away with our time.  Our last post was about Zachary leaving PCH where they gave him a thumb.  We never thought we would be able to post that post, ever.  Zachary did amazing during and after that surgery.   We are now in thumb therapy 2 times a week.  We now get to drive to Scottsdale twice a week :-).  So Zachary gets physical therapy, occupational therapy, speech and thumb therapy (2x) each week; he is a busy dude.

Zachary is still struggling to eat.  He has the ability to eat, he just cannot eat a lot at once.  We run his feeding tube all night so he gets his calories in for the day.  We are working with his GI doctor to figure out if we need to do some more tests to see why he can't handle the volume.  The challenge for Zachary's doctors is to determine if Zachary's heart is shunting too blood from his gut which causes the gut to slow down or if there is something inherently wrong with his gut.

We also had a follow up appointment with Zachary's orthopedic doctor.  We have been watching the progress of his spine.  He has an extra piece of vertebrae that has caused scoliosis.   The scoliosis has progressively been getting worse, which means he will have to have surgery to remove that extra piece so it doesn't cause long term issues for his back. We are going to plan to do this surgery next summer.  This will be Zacharys 15th surgery.  
Again, thank you to all who have and continue to pray for Zachary and our family.  

Family time at the DBacks game!

Zachary coloring with his new thumb!!!!!

The thumb after the cast was removed. 

Friday, April 29, 2016

Surgery Post

Keep checking this post for updates today. 

6am
Red shirts for Zachary

Close up of his hands...

Video we made this morning:

Video describing the operation:

9am
Zachary went back to the OR. Surgeons understand our expectations and goals. 

3pm
Zachary out of surgery. All is good. Waiting to see him. That is thumbing amazing!!


10pm
What a God of perfect timing today.  We arrived at the hospital and zachary went back for surgery around 9:15am.  We had quite the list of things to do today on top of Zacharys surgery.  It was also Micah's 6th birthday!  We had planned his birthday party months ago and when Zacharys surgery got moved forward to today, we new we would just had to roll with it.   So today God had everything timed just perfect. 
I had to run to Micah's school and deliver his cupcakes for his class and be with him for a bit around 1:30pm.  This is when zachary was expected to be rolled out of surgery.  But God had it planned just right and the doctor didn't come out to give report until I got back to the hospital around 2:45pm.  Zachary was then in post op and we were able to see him.  We finally got to our room around 5:40pm. We were cutting it close because we had to leave for Micah's birthday party at 6pm.  Are you spinning yet??!!   
We left exactly at six and made it to his party just in time.  He had a BLAST!!!! Boys are all tucked in for the night and we are off to bed as well. We will update tomorrow how things are going. He is stable and doing great.  They did an amazing surgery today. Here are some before and after pictures.  They are absolutely amazing!!  
The before and after pictures were taken in the operating room and showed to us after he was done.