Thursday, January 29, 2009

Living on Tulsa Time

We spent a wonderful weekend with family. The first stop was to see one of the many who have become a very special part of our family in the journey ofthe past 2 years, Wendy and P.J. (a five year old AMCer) and Paul (her hubby and their younger son Patric); may not be related to us by blood, but the bond we share with them is inmesureable. I first met Wendy a little less than 2 years ago at the very first AMC Convention we attended, she was a"young" mom too and I identified with that and her son P.J. gave me and Jon so much hope for the future and what Jackson would accomplish. As long asI live I will never forget this:


On the Sunday (last day of convention), Jon had gone out to get the car, I was standing in the lobby with Jackson in his car seat in the stroller. I noticed a typically developing child running as P.J. ran behind them. When they reached the stairs, I thought to myself, how is the heck is P.J. going to get up those stairs, he can't pick up his feet like me. Well, before Icould get the thought completely out of my head, this little amazement hit his knees climb the stairs and took off running again. I cried and cried anda s soon as Jon came to pick us up all I could say was "Jackson will be fine".


Wendy and I chatted during that convention, but life was chaos for us then,between caring for Jackson, changing braces every three hours, pumping andf eeding, there wasn't much time to just hang out. By the time last year's convention rolled around in July, Jackson was doing so well, that we were bracing only at night and I (thank goodness) was done pumping, so there was a lot more time for hanging out and that is just what I did for two and a half wonderful days, when we weren't in sessions, I hung out with Wendy, we sat and talked for hours about our lives, our kids, anything we wanted(while my wonderful hubby hung out with the kiddos). Wendy and I had an instant bond, we left that convention with a new found friendship (and kinship) that will last a lifetime. We talked about it so many times in our numerous phone calls and text messages since July that we needed to visit each other and let our boys hang out. So when Jon asked about going to Oklahoma, I knewthat there was a stop we needed to make on the way---we had to see Wendy and the boys. So on Friday night after seeing Dr. Mathews (it's a story foranother post---but he has AMC too) we drove to Dallas. We arrived around 10 p.m. and stayed up while the little guys played until 1 in the morning. We got up the next morning and had breakfast, P.J. showed us his feeding machine and Jackson tried out his new adaptive equipment Wendy found for us---it's called a dip stick and is made for kids to eat ice cream cones without making such a mess---but it works well for bananas. P.J. and Jackson totally get each other and Jon and I left with yet another beautiful picture for our future and Jackson's. During our visit, several times we heard P.J. scold his brother for trying to hand Jackson a toy "the wrong way"...P.J.knows how Jackson should get a toy, he uses his hands in a very similar way to Jackson. The funniest moment came as we were leaving and we told Jackson and P.J. to give eachother five--they turned their hands "backwards" like that was just how you give five---it was truly amazing to watch them and how well they know each other.


On Saturday, it was on to Aunt Aubrey and Uncle Jason's, their kiddos and Paw-Paws. When we were about 30 minutes from their house, Jackson started asking for Paw-Paw and NeNe (his dog) and was so excited to finally see them when we got there. Jackson had a ton of fun hanging out with his cousins: Alexander, Abby, and Andrew. Andrew is a little younger than Jackson and it was absolutely precious to see him (and Abby) try to roll like Jackson!


It was a wonderful weekend spent with family.




Wednesday, January 28, 2009

A Visit to the Doctor

So, for a while we have been wondering where we stood on Jackson's hands. We saw a doctor at convention, who told us that Jackson's had were functional and that he would not suggest surgery. We wanted another opinion and we had been told there was a doctor in Zachary, LA--not too far from us---that had AMC, so we decided to pay Dr. Mathews (yes it only has one T) a visit. First let me say that Dr. Mathews is in total agreement that Jackson's hands are functional and his hands and arms are not tight, so he would not reccomend surgery, although he did refer us to Texas Scottish Rite for a second opinion. Secondly and amazing to me, Dr. Mathews has Arthrogryposis also! He is mainly affected in his lower extremeties, but does have some AMC qualites in his upper extremeties. He has lower muscle tone than typical in his upper body and get this he can not turn his hands palm up---yeah and he's a hand surgeon! Just proves once again that you can do anything with the mind set and God's help. It was a great visit and he is very interested in following Jackson, even though he doesn't specialize in pediatrics. Very uplifting and inspirational guy and once again our family is in LOVE with a doctor.

Thursday, January 1, 2009

Christmas Time is Coming to a Close

I can't believe my holiday vacation is almost over...I really want it to last longer and who am I kidding I need it to last longer, we still have a lot of stuff to do in the house...but it will come. We spent Christmas with my mom, dad is still in the hospital, but seems to be improving, so please keep those prayers coming. It was a great Christmas and a wonderful New Year Celebration. Jackson has grown so much, that I just can't believe it...he continues to amaze me everyday!

We celebrated Christmas mass at our church and the tradition is that the youngest child gets to put baby Jesus in the manger and Jackson did the honors. We had told him all day Christmas Eve about how important a job it was and after he put the baby Jesus in, he looked at me with the biggest smile! We had a great New Year's Eve celebration with our neighbors and a grand time watching the "booms" as Jackson affectionately calls fireworks!

Here is my favorite picture of the season:


And here's to a wonderful 2009 filled with lots of achievements and good health for all of you and all of us.


P.S. Jackson's party is coming soon, can you believe he will be 2?