Monday, November 22, 2010

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"

Tuesday, November 16, 2010

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!"

Thursday, November 4, 2010

Check out this awesome story of a boy who was Born with a congenital arm and leg defect like Jack...I was so inspired!!!    This little boy is more mature that I EVER was at his age.  I KNOW Jack already has so much to overcome, but I pray that through his tough days it will produce a character to take him beyond his limitations!

Thursday, October 21, 2010

Hand update...

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.  -  Helen Keller

Today we went to see Dr. Mcfadden here in charleston regarding Jack's Right arm.   He saw Jack when he was 6 weeks old and wanted to wait until he was a little older to see progress and function of his arm to make any further decisions or recommendations .   I was at better place emotionally at this visit, and was more able to digest his thoughts and plan of action - or lack there of, and even ask thought-provoking questions.   After what seemed to be a brief session of questions and answers, I felt like we left with little more information than we came into the appointment with, and a lot more questions...  such is to be expected when Jack's arm is not so straight-forward.  Thus, it is hard to give a straightforward answer. We talked about everything from extensive surgery, (transplanting fingers and toes to make "thumb") to the use of a prosthesis to doing nothing at all....

I respected his uncertainty, although at times (through the training of our society) I expected a "Let's just do this" approach and be done with it.  The abstract of what to do with Jack's arm is just that - abstract.

He took a few x-rays that relieved what we had thought.  Right humerus, fused elbow joint, short ulna (he could not 100% decide on the ulna vs radius) and 3 complexly fused digests (fingers).  He wants us to get more detailed x-rays of his elbow joint and fingers.  

So- at the end of the day, this is what we are left with.  The most important thing for Jack is quality of life.  Well...if you ask me it is pretty hard to try to determine what i "think" his quality of life would be given our current technology, financial resources, expertise of physicians having dealt with such rare cases...None the less, Dr. McFadden was in agreement to seek other opinions, and gave us a few names.  We continue to keep our plans to see a few hand specialists affiliated with Shriners/St. Louis children's hospital in December.   In the mean time, we are encouraged every day by Jack's ABILITY to use his right arm to help him hold objects.  I am so grateful that he HAS a Right arm to even do things with.  I tend to go through days where i still question "why" God...(how can you not?). It is easy to waste an exuberant amount of energy on "Why this, Why that"or ' is this really part of God's will"?

Isaiah 40:28 " The Lord is the everlasting God, the creator of the ends of the earth.  He does not grow tired or weary, his understanding no one can fathom."  No i can not fathom God's rationale for Jack,  I continue to thrive on the wellspring of love, the gift of every day and the assurance of eternal life HE has given us. 

Thursday, October 14, 2010

Visit with Grandma and Grandpa Talley (almost 7 months)

Grandma and Grandpa Talley came to visit Jack this past week.  They were of great help to me as James was in Germany for work, and I was also working.  Jack really enjoyed long walks with grandpa, story time, and just hanging out. We got a lot accomplished while they were here!

Friday, October 1, 2010

6 months!

So Much to be happy about! 

I LOVE my Thumb...

Getting ready to go for our daily walk/run with mommy!  I LOVE to sight-see...

Trying to sit on my own is hard work...

I CAN do it!

Mommy tried reading this quite advanced tongue-twister book to me (she had great difficulty might i add...) and I was like...

As a child growing up, I read all these books and LOVED them..they always had such a good message that really hit home.  Grandpa Talley sent these in the mail today - These are some of the "new" books from The Bernstein Bears! I can't wait to start reading them to him!