Mr. Cap Needs Your Prayers

 

Introducing...

 

 

 

The one... the only....

 

Mr. Cap.

 

?????

 

Umm... Not quite...

 

How about....

 

SIR TOPHAM HAT!!

 

Yes!!

 

"Dress up in your favorite book character" day was on Friday and Aaron was so excited to be "Mr. Cap."

 

His little tongue could just not say Sir Topham Hat all in one grouping!

 

Who cares!!

 

He was the cutest Mr. Sir Topham Hat Cap alive!

 

-----------------------------

 

This Mama is grieving this morning.

 

So is Aaron's Papa.

 

We are grieving.

 

Our little guy has been blossoming in the last few months. 

 

In every single area.

 

He is gaining physically and academically and socially.

 

He's becoming more independent in his daily care.

 

He has been so very very proud of himself.

 

And we have been amazed and beyond proud of every single one of his accomplishments.

 

On Tuesday Aaron is having surgery.

 

Not just one surgery but several.

 

In one single day he is going to lose for a very long time all the gains he has made and we are grieving beyond words.

 

Oh please pray for our little guy.

 

In a nutshell....

 

Surgery One

The bone in his upper left arm is going to be cut in order for the arm to be rotated into a more natural position.  In this way Aaron will be able to have his hands work together.  It should increase the function in both his hands as they will be able to work as a unit. 

 

Surgery Two

Aaron's knees do not fully extend.  Because of this he stands in a slightly crouched position which is exhausting.  He tires very quickly and can only stand for short periods of time.  In the long run the strain on his back is going to wear on him.  So.... they are going to operate on both of Aaron's knees.  The EASY surgery involves knicking the tendons in his knees and seeing if that gains the degrees needed in order to get his legs fully extended.  If that happens than the surgery is over. The HARD surgery involves putting plates in his growth plates.  I'm not even going to begin to explain this surgery.   I'm just praying my  guts out that Aaron's knees cooperate and we don't have to go this route.

 

Surgery Three

Aaron's hips are also extremely tight so they are going to knick the tendons in his hips so he can fully extend at the hip.

 

Please pray for our Mr. Cap.

 

 

He's so nervous about the coming surgeries.  He knows he's going to come out with casts on his arm and legs.  He knows and WANTS the doctor to turn his arm.  He doesn't fully understand the knee issue but he trusts us.  We haven't really told him about the hips because it is just too much information at this point. 

 

For those who wonder why we are doing three things all at once...

 

Aaron has been on the surgery waiting list for almost a year for his knees/hips.  We were anticipating that he would be getting that surgery in May or June based on how long others were waiting. 

 

We had not been considering having his arm rotated but at Christmas time Aaron received several Lego sets as gifts.  It was hard for us to watch him struggle to build those sets with one hand that has very little function in it.  He had NO trouble following the directions and could have built sets much harder than the ones he was given.  But he couldn't put the pieces together.  (Aaron has NO pincer and his fingers do not bend.)  As we watched him we decided to go to Philly to see what the doctor could do to get his hands working together.   Rotating the arm to get Aaron's hands facing each other so they could work together was the BEST option and the doctor agreed to do it.  So Aaron was put on the surgery schedule.  The wait list for that surgery was not as long.  They had an opening in March with the option of offering the surgery room to BOTH doctors.  We chose to get everything done at once.  Otherwise we would have faced two, possibly three surgeries over the next six months. 

 

So we are biting a very very hard bullet.  Our littlest is going to be a hurting puppy for the next weeks/months and we would definitely appreciate prayers for him. 

 

We will be leaving tomorrow for Philly.  We plan on updating on here and on FB as we go through the week. 

 

Please keep us in your prayers.

 

 

We love this little guy very very much.