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.

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!

Jack
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...

Clear as Mud

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
-Winston Churchill 


James and I have done a lot of listening this past month, although it has been hard to digest what we hear. The water we tread in now is murky. Our souls and minds ache for peace and wisdom.  More than ever it is apparent to us that, while we think we are in control of jack's course, all we have is our human ability to make the best decision we know.  The rest - I can only give to the Lord.  


We received a 3rd opinion from Shriner Hospital in St. Louis from 2 different Doctors:
1. Upper Extremity Specialist:  After reviewing Jack's x-rays, he feels Jack is missing the Ulna bone instead of what we previously had been told (the radius).  We discussed potential of separation of the fused elbow joint, separation of the fused 3 fingers, use of prosthesis,  a toe to hand transplant to make a 'pincher' for his hand.  We listened eagerly to his propositions and he entertained our questions.  At the end of the day, James and I  still rest that we will most likely not do anything for his hand now.  


2. Lower extremity specialist:  Recommendation is Limb-lengthening. This procedure would start at age 8.  According to his research, children seem to get more length out of each surgery when done at a later age.  An external fixator would be surgically placed in Jack's lower leg for 3-6 months, followed by 6 months of intense physical therapy.  This would occur for Jack at least 2 times during his childhood (age 8 and 11).  They estimate being able to make the leg "almost" as long as the other.  In the mean time, growth would have to be stunted in his Left leg either by removal of the growth plate (surgical) or medication.  Jack would also require a surgery to stabilize his ankle. We are not sure, at this point, when that would occur.  The Doctor projects Jack may still have to wear a brace on his affected leg after all lengthening is done.  He also brought to our attention, if we choose amputation, the cost of a prosthesis for the duration of Jack's lifetime.  Something we had not thought about, and quite frankly, is not a priority in our decision making (even though we know it's a big deal!).  Cost aside - Jack's quality of life and fullest function of his leg is my priority.   In  the mean time, Jack would have to wear a special shoe lift and brace to stabilize his ankle and knee.  


Lots to digest, lots to think about.  I am so thankful to have access to the latest advances in medical technology and wonderful doctors willing to see Jack.   Please pray that we would gain wisdom and peace regarding our decision for him!

Happy New Year!

I know that this posting is long overdue!  These are Pictures during the month of December when we traveled to St. Louis to visit family and friends for Christmas!  It was so wonderful!

Great-Grandma Mcatee, Mommy and Jack! 

Some new family photos thanks to  Jason. A. Zwiker

New Pics!

Jack's 8 months old (already!!)  I took some pre-Santa pictures with Jack's new Santa hat!  The rest are pictures of Jack's little play-date friend Zoe!  She was born a few days before Jack! We do fun stuff together often!

uh...i know i am so cute!!

LOVE my thumb...

Help, mommy...!  She's trying to get me!!!

Jack: "Why does she get to wear that cute little white bow in her hair and I don't....?!?"

....still wondering....

Zoe: "Jack that's my beauty hairbrush...gimmie"  Jack: " uh...i'm  just lookin at it, cuz i only brush my hair every few months...and its kind of interesting"

Genetics update

Proverbs 20:24 :
" A Man's steps are directed by the LORD - How then can anyone understand his OWN way?"
A few months back, Jack's blood was obtained to look at a detailed view of his chromosomes (called a microarray analysis).  Essentially each chromosome (46) are looked at under a microscope for duplications or deletions.  This process took a few moths of machine and hand counting (can you imagine!?!).  The results revealed a duplication on jack's chromosome 4p15.32.  Thanks to the Human Genome Project we have a lot of information available to us!  However, some of the data that was collected regarding each gene - is not particularly specific enough. 

In order to attempt to understand the clinical significance of the duplication, blood was obtained from James and I  a few months ago- to see if we carried this duplication or not.  It would only be clinically significant IF neither James or I had this duplication... thus meaning the duplication could have significance in explaning or contributing to Jack's Limb abnormalities. 

The result:  James' tests were normal.  My test reveled the exact duplication of chromosome 4p15.32.  Therefore the geneticist feels that since I am unaffected (no limb anomalies) that this finding is not likely to be the cause for jack's features, thus not identifying a genetic cause. 

So, we may close the book for now on this chapter of exploration into Why? this occurred for Jack. This leads me back to the Soverighty and perfect plan the heavnely Father created for Jack.  How wonderful it is that the control is out of my hands, but in Lords!  I find through every day...trying to understand God's perfect plan is SO much more difficult than trying to embrace it.  But, as I am leaning on HIM to give me strength to embrace it - I have Peace!

Remember what David wrote in his 139th Pslam :
" For you created my inmost being, you knit me together in my mothers womb. My frame was not hidden from you when I was made in that secret place. All the days ordained for me were written in your book before one of them came to be!"