Friday, June 10, 2011

GROWING, HAPPY AND GETTING WHEELS!

GROWING, GROWING GROWING!
SITTING UP!

Witt's life continues to be one of the greatest examples of God and His purposes! For those who might be visiting Witt's blog for the first time let me tell you a bit about Witt! He is a very rare trisomy 1 child...I started to say "baby" but he's 2 1/2!!! He actually has a partial addition and deletion on the number 1 chromosome. Texas Children's genetics came up with 30 known cases in the world. The nurses in the PICU were googling it! Before Witt was born Melanie and Austan were told that several things were wrong with Witt. They opted to not undergo anymore testing realizing even then that Witt's life was in God's hands and He most certainly has the final say over all including medical tests. Witt was not expected to live but a handful of days. The chromosome issue has caused abnormalities most notably with his heart and brain. Witt has had 2 open heart surgeries to try to repair the mitral valve but there is no more that can be done. Throughout the first 2 years of his life and months upon months in the hospital Mel and Austan were told several times that this could be the end. They have learned to listen to the doctors and certainly appreciate their knowledge and expertise but also cling to the truth that God has the final say in all things! Witt has required extra oxygen since he was a couple of months old. A little over a year ago it was decided that Witt needed to have a trach put in and go on a ventilator. He breathes on his own but the ventilator helps really expand his lungs which were staying full of fluid mainly from the heart issues! Witt is now a robust 33 pounds thanks to his feeding tube which was necessary because basically everything he swallowed was going directly into his lungs. Witt is a miracle! Not that most of us aren't miracles but with Witt there is no denying God's work!!! It has been almost a year since he has been in the hospital!!!! He has actually had several colds and ear infections but has been able to stay home. I believe Witt has confounded and surprised all the doctors especially Dr. Ruiz(pulmonary specialist) and Dr. Macicek(cardiologist). Dr. Ruiz has even turned down some of Witt's settings on the ventilator and Witt is now only on 1/4 a liter of oxygen. What may blow me away the most is how God is so glorified and magnified by Witt's life! This has been my prayer all along...that if Mel and Austan were going to have to walk this walk and their son was going to have these very special needs then let's at least ask God to bring Himself infinite glory!! I hope to one day point people to God in the same way that Witt's life always has!!! Witt's(and Mel's and Austan's) life has not always been easy but God has always been Faithful. He has been faithful to make up with peace and joy where ease has been lacking...Glory!!

Now for some more current news! The great thing is that Witt has had very few doctors appointments. As I mentioned, a couple of weeks ago at his lung check up, Dr. Ruiz turned one setting down on the ventilator. He made no promises but said we might as well keep turning it down slowly! He said that you never know...Witt has already surprised us all! Over the past week Witt has been fighting a pretty nasty head cold but is slowly getting better. He has no doctor's appointments for the month of June! AND with some very kind donations and saving money on their own, Melanie and Austan now have a down payment for a special needs van!! They are going looking this weekend. Its getting harder and harder to lift Witt into his car seat while managing his ventilator and oxygen. With a specially equipped van, Witt and his equipment can simply be wheeled up and "lifted" in! This will have a wonderful impact on the Lupher's lives and I pray it will give them a chance to touch more lives through Witt as they become even more mobile!!!!
Here are some videos of Witt enjoying life over the last month!

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5 comments:

Shelley said...

Glad to see he is doing so well...God is good like that :)
Blessings

Sonja said...

well how great was this! I got my 'Witt fix!'... to see his response to Mel is just so precious! He is just growing like alittle weed!

This was wonderful Karen!

Love to all of you!

Sonja

Kristin's Gran said...

We rejoice with you that Witt is doing so well these days. He really is a blessings and a gift from God.

Debbie Mueller said...

WOW! Witt is such a precious miracle! It is so awesome to see how well he is doing. He is so blessed to have such wonderful parents and grandparents. You are all amazing, and such a selfless example of God's love! Praying God continues to bless sweet Witt and all of you! Loved the videos!

The Mustard Seed said...

Found you on Kelly's Korner.. we also live life with our sweet boy and his very rare chromosome pattern- Partial Trisomy 17 with Partial deletion of 2... Can relate to many of your stories! Can't wait to get the chance to read through your blog!

Angel