Just a parent

As parents for Micah and Josiah we try to the best of our ability to make wise decisions for them.  Becky and I are looking into several schools for Micah.  We are also looking into ways to keep Josiah occupied so he can focus his exuberant energy.  For Zachary we are trying to decide which surgery to do next.

We have been planning for Zachary to have his next GI surgery this spring time.  We have gotten approval from Zachary's various medical specialties for this GI surgery coming up at the end of March.

We also found out this past Friday that Zachary's intestines have a narrowing where he had his very first set of GI surgeries.  This is what has been complicating his feeds.  He hasn't been tolerating feeds like he should. He spits up all the time so he isn't gaining weight like he needs.  (It can be up to 6 times in a day.)  The spit up is not like an infact where the food just comes out of their mouth.  When Zachary spits up he is heaving, coughing, and trying to throw up anything in his stomach.  This one episode can last 10 minutes.  Afterwards, he gets tired (I would too!).  We shut off his formula pump for a little bit to allow his stomach to rest.

We had a long conversation with his GI surgeon regarding the upcoming GI surgeries.  He needs two GI surgeries to have it be considered 'normal'.

GI Surgery 4

• March 27th 7am at Phoenix Children's
• Zachary doesnt have an anus so the doctors will make one.  
• Disconnect the colon from his bladder and connect to the new anus
• Dialate or remove the scar tissue from previous repair.  

GI Surgery 5

• Zach needs 4-6 weeks to heal from the first surgery before the second surgery takes place. 
• Connect the colon to the colostomy. 
• No more colostomy bag!! WooHoo!

This upcoming surgery in a couple weeks is the most complex of the two.  The surgery will take about 4-6hrs.  We have to arrive at the hospital at 530am for a 7am start time.   Zacharys surgeon also explained since Zachary has Scoliosis there is a chance that he may never have control of his bowl movements which means he would have to stay in diapers the rest of his life.  The other option would be to convert his ostomy back at some point.  We pray this would not be the case but only time will tell.

We also had an appointment with Zacharys orthopedic doctor to discuss his spine and hands. Zacharys spine has an extra vertebrae (What, spare parts??) and there is a spot that tried to form the disc but it didn't. His spine is curved at a 30 degree angle which is a pretty significant curve for only being a year old. 

 The doctor suspects at some point in the next several years he will have to have surgery to take the hemivertebrae out and fuse the discs together above and below that spot. He would like Zachary to be much bigger before this happens. He thinks maybe 4 years old depending on how fast his spine curves.  We will have follow up X-rays every 6 months to follow the progression of the curve. 

 We also discussed options for Zacharys left hand which is missing the radius bone and also what to do about moving his pointer finger over to create a more natural grab for him. Our doctor advised us that the best care for this would be in Dallas at the Scottish Rite Childrens hospital. Sigh..... Ok what's another challenge. We can do this. We have never been to Dallas and always wanted to do a roadtrip thru Texas. So Becky called over and got the ball rolling with all the paper work and all the records they will need. This surgery will probably take place late fall or early next year. There is so much more that has happened this past month with different doctors that we can't even go into in this post.  

We would appreciate prayer to guide the doctors' hands as the upcoming surgeries are very complex and his surgeon actually has to do this procedure with one of his partners because of the duration of the surgery.  Peace for us as we anticipate this upcoming surgery.

We praise God that Zachary has been doing well this far.

This is the first surgery that has not been a necessity for Zachary.  Up to this point we were making medical decisions and they impacted whether or not he was given a chance to live.  This surgery will probably not affect lifespan as much as how normal will he be compared to his peers.

People often ask us how we can carry on.  Two answers: Our focus is on God and His plan and second we are trying to just be good parents.  Any parent with those two goals can overcome any obstacle.

Our Three Boys!

These two are inseparable.  

Josiah- I want to have 'Achary' drive!