Crazy boy!

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Sorry for the lack of updates. Zachary is doing great! Last weekend Zachary’s G-J tube broke so on Monday we had a nice trip to the U of M for a new tube. Zachary was terrified and didn’t want anyone to touch him. So the Doctor’s let me come back to the operating room and I got to pull his G-Jtube out and help put a new one back in’ How fun is that! Hands on, I guess I don’t need any schooling I just learn as I go.

On Thursday We are back down at the U of M for a swallow study,Gastic bowel study and a upper GI. Zachary is still aspirating and the Doctors are concerned about his lungs. Next week Zachary is having a MRI on his head because of his seizure active that he was having in the hospital and because he has been getting dizzy on and off. We are also seeing the Nephrology ‘Kidney DR’,  Urologists ‘Bladder Dr’, ENT ‘ear Dr’   and Dermatologist ‘Skin Dr’ all in the next two weeks. We will be very busy for the next couple of weeks. The plan is after all these test and talking to all these DRS we will come up with are next plan on what surgery Zachary should have to repair his Esophagus and stomach.

Zachary is such a happy little boy that is always smiling and running around like nothing is wrong with him. Zachary had his last day party at school today and all the kids are always asking him “what is that on your back and why do you have a Mickey Mouse bag on your side and Zachary Just looks at them and says I am a super Hero and runs off and plays like nothing is wrong or different with him. This is all he knows, and to him he is not different. I love his attitude I wish all kids would be more like him and just love life to the fullest.

This is Zachary when they perforated his stomach

And this is my silly boy full of chocolate!! Look how far he has come!!!!

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Zachary is loving that he is home!!!    But He is still battling a nasty cough and is still throwing up.  Last week I got a call from his primary Doctor that told us that he is defiantly aspirating into the lower right lung. Not good, so now we have a Sat monitor that he is hook up to at night Along with his J-tube feeds, G-tube suction, Mitrofanoff , all in his rock hard hospital bed and Zachary doesn’t seem to mind none of it, this is all that he has know his whole life. We also have Zachary in a home made Danni Sling so we can keep him upright in his bed so he doesn’t aspirate.

Zachary had a follow up Doctors appointment with DR Hess. Dr Hess was the surgeon that did the Nissen. It was pretty funny because Zachary threw up all over the floor as soon as we walked in, what better timing! Dr Hess agreed that Zachary is to complicated and he doesn’t feel comfortable doing anymore for Zach’ well I really don’t want him to touch Zach so at least we are on the same page. Dr Hess also agreed that he will help us find a Doctor that will repair his Mistake. Zachary has a follow up with GI on Wednesday and we are also meeting with Dr Hess to come up with a plan on Zach’s next surgery. Zachary had a eye appointment at the U of M today and they are concerned with his High Blood pressure and his retina is looking a little more damaged. So the eye Doctor wants to do another ERG on his eyes and a MRI.  Zachary will need to be put under for 2-3 hours for both of these procedures. We are not sure when they are planning on doing these but I will update as soon as I know.

Before I was a Mom,
I never tripped over toys
or forgot words to a lullaby.
I didn’t worry whether or not
my plants were poisonous.
I never thought about immunizations.

Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind
and my thoughts.
I slept all night.

Before I was a Mom,
I never held down a screaming child
so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night
watching a baby sleep.

Before I was a Mom,
I never held a sleeping baby just because
I didn’t want to put him down.
I never felt my heart break into a million pieces
when I couldn’t stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom,
I didn’t know the feeling of
having my heart outside my body..
I didn’t know how special it could feel
to feed a hungry baby..
I didn’t know that bond
between a mother and her child.
I didn’t know that something so small
could make me feel so important and happy.

Before I was a Mom,
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment
or the satisfaction of being a Mom…
I didn’t know I was capable of feeling so much,
before I was a Mom.

The rest of the family is doing great! School is almost over and the kids are excited for summer and lots of sleepovers and bomb fires.

Thank you for all your thoughts and prayers,

Stacey