Shriner's Hospital

The Shriner's Hospital proved to an enlightening day for our family.  Tim and I came away with things we didn't want to hear, things we were unaware of and also a sense of security in knowing that Chase will have the help he will need within their walls.

Entering the hospital, we were at ease.  This was a place that I knew in my heart had our child's interest in mind.  It wasn't about the mighty buck.  Knowing that what my insurance didn't cover, the hospital would pick up was comforting.  I was then able to focus my energy on Chase and not how much it was going to cost our family.

The staff did their best to speed us through.  We arrived at 10:00am and left at 3:00pm.  Not exactly fast but they did their best.  Occasionally they would drop Chase gold fish crackers, or crayons and even some apple juice.  So, though the waiting here and there was long, we never felt forgotten.

Xrays confirmed that Chase hips look like they are not developing well.  Until he is walking properly, we will not know for sure.  The xrays also showed that Chase has high arches that are not good.  This is a common problem with CMT patients.  The way he walks on the sides of his feet are due to this.

We had previously been told that whatever Tim had, that Chase would share the same burdens.  This is not true.  Each CMT case is unique from one another.  Example of this is that Tim has severe dropped (flat and weak) feet.  Chase has high arches instead.  Chase will be seeing a geneticist as soon as they can get him in.  The expected time frame is 6 - 9 months though.  This will be a long wait.  Once those results do come back, we will have a clearer view of things.

The two ortho doctors we saw were enlightening.  They made sure we understood all that was happening and why.  They said that we can not predict what the future will hold for him.  His case will be his own unique challenge.  One doctor felt that the AFOs might benefit him and felt since we were there to go ahead and get them.  The ortho surgeon who will do his surgeries (my heart sank at the thought of him having surgeries) in the future felt that Chase needed to find his own gate without the AFOs.  He felt that even if he didn't walk until he was five, that it was best that he find his own gate.  This doctor also said to tell all those folks that keep telling you he needs to walk, to back off.  He will in his own time...  Of course, I know Chase wants to walk now.  He tried to keep up with his little girlfriend last week but couldn't.

Chase was fitted for AFOs.  It is a type of brace to keep his feet more flat and give him better stability.  He was so brave and patient while they cast his legs for them.  It helped that the man, Alex was very personable and able to keep Chase's attention.  Of course, he said that most almost two years are throwing fits complete with snot and tears being flunged.   Kudos for Chase's behavior.  He will go back in a month to pick them up; just in time for his birthday.

The day was long and filled with things I didn't want to digest not was I aware of before going.  However, I am reminiscing on the day and the memories of the other children there.  Included in those children were a boy with no left arm, a 7 week baby in two full legs casts, a boy in a wheel chair that had MS and was missing part of his right arm, a boy with a helmet on his head that had what looked like a phone tower on top of his head and he was also in a wheel chair.  So, I refuse to have pity for our situation.  God will provide his love and his blessings and with that we will be victorious.

One last note, if you see a Shriner collecting coins at an intersection, empty all those coins at least and donate.  I had done it for years because my grandfather was active in the Shriner's and also a driver for those that needed the hospital's service.  It never occurred to me all the good that came from those coins and sometimes dollars that I dropped in the bucket.

Example of AFO