Update of my little nephew

Many of you have heard me talk about Kal. I know quite a few of you have met him and know what's been going on with him. My sister wrote a letter about his upcoming surgery, and I wanted to pass it along. Thanks for reading!!

Dear Friends & Family,

Some background info:

At 6 months we noticed Kalvin had difficulty breathing.

At 9 months he was hospitalized and needed to be resuscitated 3 times due to the lack of strength he had to cough and clear the congestion that had built up in his lungs.

At 11 months he was trached and put on a ventilator.

He was in the Pediatric ICU for 3 months. During this time he was diagnosed with carnitine deficiency (carnitine functions in the body as a carrier of fatty acids to the energy centers in muscles (mitochondria), a deficiency of carnitine can result in extreme muscle weakness). A few years ago his diagnosis was placed under the Muscular Dystrophy umbrella.

We were told to learn sign language so he would be able to communicate with us because he would never be able to speak well; he began speaking very well less than a year of having the trach - thanks to the Lord!

We were also told he wouldn't be able to walk and to put him in a wheelchair as soon as possible so he could be independent; he started walking just before turning 3 - praise the Lord!

Unfortunately when he was almost 6, he had a couple bouts of pneumonia and lost most of the strength he had. He has not been able to walk since. He is now almost 10 (August 31) and has grown a lot, this, with his weakened muscles, has resulted in him having severe lordosis (spine curved too far inward) and scoliosis. He is unable to stand at all and it is difficult and painful for him to be in a sitting position for any period of time. Because of these issues we have decided to go ahead with a procedure called a spinal fusion. We are praying this will help him to handle being in a sitting position and alleviate the back pain he is experiencing. We are also praying that it will result in him getting back up on his legs and walking! We are told there are no guarantees and that if he isn't doing it (walking) now don't expect that he will be able to do it afterwards - but we know who is Lord over heaven and earth!

Kalvin's surgery will be August 30th at 8:30 am at Denver Children's. He will be in the OR for 6-8 hours. He will be having a complete spinal fusion from T-3 or T-4 down to his pelvis. This includes putting in rods the full length of his back and fusing his spine together to become one, long solid structure. He will be in the PICU for 1-3 days and then a regular hospital bed on the 6th floor for another 4-7 days. During the next few months we have to be extremely careful to limit how much his spine bends or twist so that the spine will heal properly and prevent him from experiencing pain. It could take up to a year for him to completely recover from the surgery. The main drawback of doing the fusion now is that Kal’s trunk will no longer be able to grow. We are struggling with this and ask for prayer for clear answers in how this could affect his life and for peace that this is the right time for the surgery.

Our specific prayer requests:

Peace about doing the surgery now.

No complications during the surgery or with anesthesia.

He will not get an infection and that the incision will heal quickly.

That he will not get pneumonia.

That he will stay healthy after the surgery even though he will have a lowered immune system.

He will have minimal pain and that we use the right medications and right amounts to help him.

His respiratory and digestion functions will return quickly.

That he will be able to sit for long periods of time without pain as well as not have the back pain he is having now.

That he will be able to stand on his own.

That he will be able to walk once again.

That we will be a blessing to all of those who care for Kal in the hospital and at home.

He has one incredible spirit that continues to teach Tony & me!

Our favorite verse we pray for him is: Isaiah 40:31, "But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint".

We also cling to 2 Cor. 12:9, "'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me".

We covet your prayers and thank God for all He is going to do. We so appreciate our family and friends and the part you have played in our lives. We have felt your prayers so often and have experienced your love and concern. What a blessing and gift from the Lord you all are.

In Christ,

Tony, Stephanie & Kalvin