Wednesday, February 16, 2011

A few new pics!

Jack happenings...

I have been so focused on our doctors visit, opinions and deep thoughts ...i feel like i have neglected to say how wonderful it has been watching Jack grow before my eyes! 

He's a few days shy for 11 months old and what a cutie he's becoming! (I am slightly biased...but dont you think?)  Every day it seems he shows me a new quirk about his personality.  The other day, he had his first official "temper tantrum" (more of those to come i can only assume...).  He does this thing, where if he does not want to do what he wants when he wants (ie take a nap, change his diaper, play with a certain toy, assist him in anyway...) he THROWS himself back on the floor and swings his legs and head back and forth.  Gee... i can only imagine where he gets that from (mom and dad i am sure you have much experience in this field...) 

Jack is so much more interested in the food we eat.  However, it seems that when I cut up small versions of what I am eating, he is no longer interested in that "stuff", but would rather have the large portion of food I am eating....It makes meal time a little frustrating.  Glad dad has more patience that I do at times...

Here are a few resent pictures...
Trying to stand on my own with my new leg brace.

Thursday, February 3, 2011

4th opinion

 4th Opinion
Sorry this post is overdue.  I have been mentally unclear about what direction to take or even how to digest all the information given.  It seems as more time goes by, we have more to chew on.

A week ago, Jack saw our local surgeon at MUSC for a 4th opinion regarding his leg.  We are seeing a new surgeon, Dr. Mooney, because the original surgeon we saw has left the practice.  He is following Jack's course of treatment for the Left Clubfoot as well as weighing in on his thoughts regarding his right leg.  Perhaps it was a blessing in disguise that we were forced to see another surgeon here, because we might  not have sought any other opinions in our area otherwise. 

 Dr. Mooney told us that Jack would be a potential candidate for limb-lengthening, considering his Right leg will be significantly shorter than his Left at the end of his growth cycle.   His reasoning was clear - textbook explanations of why he would qualify.  (Perhaps a textbook on the rest of life would be nice...ha, I suppose that is why we have faith and the God's word....anyway).  Jack has 4 toes.   Dr. Mooney states that  4 or 5 toes = stable foot.  3 or less = unstable.  Jack has complete absence of his fibula.  No fibula = less stable knee and ankle joint.  Jack  has a very unstable knee and is ACL deficient (meaning he is missing a major ligament to stabilize his knee).This can be treated by wearing a brace or device on his knee to stabilize it.  (Many athletes tear their ACL and have to have re-constructive surgery or wear a brace...)  He believes Jack would be able to function just fine going the route of lengthening, although He did say Jack will most likely not be a track-star... He reviewed with us the procedure (seems rather overwhelming to think about all the many surgeries jack would have to endure over the course of his childhood...), complications and potential outcome.

I wish I could just wave my magic wand, or look into the near future to see how each of our decisions will turn out for jack. So, since i've decided that will never happen... I will just resort to praying and collecting more information so we can make the best human decision we can...with all we have in front of us. 

So lets recap: There's a tie
2 - Surgeons agree with amputation of Right foot between 1-2 years old
2-  Surgeons agree with lengthening the Right tibia (2-5 surgeries, wearing external fixator for at least 3-6 months, slowing growth on the good leg to get the most out of lengthening on the Right)

Now, It would seem we need a few more tie breaker opinions....Ugh!

Well, what does he think of all of this?  Does not even phase him - figures.  I suppose that perhaps that is how the rest of his life will be...  We are working daily on things that seem to be difficult for him - tummy time esp.  He does not  cawl... yet.  Yes, I know he is almost 11 months old and has not started crawling, but I do have high hopes that he will...eventually... on jack time.  We had a brace made for his Right leg with a 'lift' to make it the same height as his other - so that when he pulls to stand he will be the same height.  He's a good eater, and very social, although I think he's showing signs of 'separation anxiety'.  All good things - developmentally appropriate.   A few funny things he's been doing:  He learned to sit up from a laying down position a few weeks ago.  Frequently i will find him sitting up in his crib in the middle of the night or during nap time crying because he can't figure out how to lay back down!  So silly but so cute! 

Continue to pray for wisdom and clarity for James and I to endure on this journey...