Friday, October 19, 2012

Holy Cow!!

I am not sure if you remember but when we first got Cav and did our first once over - we noticed that his hands were ODD.  As in his thumb looked like another finger, without that space for webbing.

But more importantly - in children with limb differences, all 4 limbs affected = a syndrome.  We went from a 1 in a million birth difference to the possibility of having EYE, KIDNEY and HEART issues.

One of the reasons my husband and I had to discuss the big D word - yep disrupting is the nice word, leaving him behind to suffer the consequences was the reality.  And so you know he came home, with his funky little hands LOL!

Since this was a new diagnosis we didn't have a Dr waiting at home to see him.  We went with who the sent us to, and it was confirmed that his hands were not developed correctly.  I discussed it HERE!

Needless to say we were saddened.  When we saw the hand surgeon he said to wait until Cav was 5 as the "fix" was a tendon transplant from his ring finger - ugh.

Because he also didn't have the THENAR muscle - the muscle below the thumb.

Once Cav got his prosthetics we realized we were going to need some help for his hands.  He can't get his legs on and off on his own as he has no thumb strength - yeah momma's not going to be there to take his legs off when he goes to college LOL!  We also realized he needed help with pushing his wheelchair correctly and using the walker.  Both of which he splits the thumb and pointer on one side and the other 3 on the opposite side.  Not real effective LOL!

Besides, his hands look just like monkey hands (which is the true term LOL!)  The Pinkie side is much longer, and the thumb side is under developed.

One advantage of our amputee team is that they got us in with the head PT who also agreed something needs to be done.

So we finally got in with a hand picked OT (as in confident enough in her skills to think outside the box.)  After a 2 hour exam she looked at me and said "I think he has given himself carpal tunnel from having to move around on his hands for so long."  

As in he DOES have the Thenar muscle 
(he wouldn't be able to do any pincer grasp without it)
he HAS the crease right next to thumb,
meaning there is the muscle!

So we will be taking both bits of information to the Hand Surgeon in Denver who our Amputee team hand picked.  Low and Behold that appt is Tues.

Regardless I am beyond excited.

It will mean splinting his hands, he might look like a dork for a while BUT oh if we can make that thumb muscle stronger and teach him to use his hands correctly - I could jump for joy for our BOY!!

AND ***Just in***
He had a meltdown at a church activity tonight (nothing new) but when we came in the house, he said sorry mom and then when I picked him up he laid his head on my shoulder and let me rub his back.  

It truly has been an amazing day! 


  1. Ohhh what joy! Such good news for your little man! And ohhhh, you know my heart just melted with your JUST IN news! Our little over stimulated boys are learning to trust and love and say "sorry" and know that they will still be loved - unconditionally! :)

  2. Holy cow girl is right?!?! How in the world do you have time to eat and sleep with all your kiddos therapies and doctor appts ;0
    So thankful they can do something to help with Cav's hands though...awesome! Will be watching the splinting method used...Josie can maybe benefit from that as her right thumb is quite weak from non-use.

  3. What awesome news!
    Curious which OT you saw:) We have one that Clara has seen that is awesome and I wonder if it was the same one:)
    Oh we understand the melt downs and amazing grace, so thankful for your moment with your little man that is huge:)

  4. It's so important to find the right Doctor. The one who looks to find the answers. Cav is such an amazing boy with a family that devotes so much to his future. What a blessing you all are. <3