Surgery can wait... Surgery is soon

Time has gone SO quickly.  We have been wanting to update the blog since we went to Texas last week, but it has been a little busy around here.

We flew to Texas last Wednesday.  We went to the Scottish Rite Childrens Hospital in Dallas, Texas to have Zachary's left hand evaluated for surgery.  The docs and medical team were very encouraging to us and very supportive.  We received a lot of information and we were told that it would not be in Zachary's best interest to do surgery at this time. Our goals for Zachary has always been what can we do to help him survive and secondly, what can we do to make his life as normal as possible.

If we did either Centralization or Ulnerazation, which would straighten his arm, it would actually reduce the hand function because it would reduce the range of motion in his wrist thereby not allowing him to bring food or toys to his mouth.

The doctors then told us about a procedure they perform when the kids are a little bit older called vascularized metatarsophalangeal joint transfer.  Basically, they will transplant his middle toe, joint, blood supply, and ligaments, under the skin to his left wrist area to straighten it.  This will improve function and not just change the appearance.

That was good news that we do not need to do surgery at this time.  They also looked at his right wrist and hand and said he is a great candidate to have his pointer finger moved into the thumb position.  That procedure is called pollicization.  We can do this procedure at any time.  We are trying to figure out if we will need to go back to Texas to have this done or if we can find someone in Phoenix.  Prayer for decision making would be wonderful.  It seems like such a simple surgery but if not done correctly, it could make his hand less functional.  Overall Texas visit was a success.

More news in Zachary's life.  We had an appointment on Monday with his neurosurgeon to discuss his scoliosis and to see if he has a tethered spinal cord.  This mean at the bottom of his spinal cord there is fatty tissue that is sticking to his vertebrae.  (Another abnormality that happened in the womb.)  They will have to go into his spine and  release the tension of his cord.  It doesn't look severe which is good news.   This means another surgery.  Sigh.....  Just when I thought we were out of the woods for anything else before his next GI surgery.  The tethered cord could be one of the reasons we are having a hard time getting him to use his legs.  When a baby or child has a tethered cord, it can cause pain or numbness in the legs.  In toddlers, they say that their legs hurt and they don't want to walk.  When they get this surgery done, they go back to walking and their legs don't hurt.  It is necessary for Zachary to have this surgery done soon.

We pray this will help him start standing and wanting to use his legs more.   The catch, we have this surgery scheduled for next Friday May 29th at 8am.  Sigh..... I keep doing that writing this post.  I just keep thinking "Will we ever be done with surgeries for Zachary?!?"  We knew it would be a long road for him so we just keep praying for strength, wisdom, and comfort to get thru this major event.  We would not be as "sane" without everyone praying for our family.

Zachary was unsure of the plane at first. 

He took a good nap on the plane! Thank you Jesus!

Dinner in Texas

The other boys got airplanes too!

Mirror, Mirror

Waiting to see the Docs!

Our View

Back Home!