I definitely can see the hand of God at work already because of the prayers that have been lifted up for our family. As I promised, I am writing today to update you on Canon’s appointment in Houston. First of all, let me assure that Drew and Canon did better on their own in Houston than I did back here in Amarillo! I missed them terribly and can’t wait to see their plane come down tomorrow! But God was watching over them and when unforeseen circumstances arose (the Ronald McDonald House did not have a room for them), God’s provision was evident (Terry and Theresa Priest opened their home for Drew and Canon). Also, Drew’s parents were able to meet him in Houston to help out!
Canon saw his pediatric hepatologist, Dr. Karpen, first. Dr. Karpen continues to comment on the remarkable health that Canon has maintained and is pleased with the amount of weight he has been gaining. Because Canon is still so well, he has decided not to list him for a liver at this point. There are still pending tests trying to nail down the exact diagnosis (he still thinks it is some form of GSD4, but is trying to make SURE that it is not some completely new disease that no one has ever seen). He is still certain that Canon does need the liver transplant, but is also resolved to do some more research into WHAT exactly his liver is reacting to. Dr. Karpen has instructed us to take him to Lubbock once a month for three months to see Dr. Higgins (pediatric GI) for blood workup and to make sure the liver is not enlarging more rapidly. If Dr. Higgins notices any abnormalities at those monthly checkups, we will go to Houston sooner, but as of now, we don’t have an appointment to go back until October! They are still saying they want the transplant done by the time he turns 2 (March 18), so there is a good possibility that we will put him on the list in September. The reason for that being that the average wait time for a liver is 3-6 months, making it likely that he will be transplanted by March.
My reaction to Drew’s news today is two-fold. On one hand, the thought of having to make the decision to list him today or not has been so hard to handle. How do you make a right decision without knowing whether or not his health will continue or whether his body could recover from a transplant so young or this possibility or that possibility… It has been a nightmare! So I thank God for taking that decision out of our hands for right now. The only decision we have to make right now is to trust with our whole hearts that God is working. Which is my “on the other hand” issue! It’s so hard to let go of feeling that I have a little bit of control here and there. As intense as the burden is to make decisions about our baby’s medical treatment, it does give me a certain pseudo-security that maybe I DO have control over what happens to him and I CAN decide his future. When that curtain of misconception rises, I can see the faulty reasoning therein. Canon was given to us by God as a blessing and a responsibility; not a programmable life to play ‘god’ with. His life has always been and will always be completely in God’s hands. That is so freeing and so frustrating at the same time! God, please help me to have more peace with that truth – that you are in control of my son’s life. My hands and muscles feel clenched around what little I feel control over; help me to let go and put my trust wholly in you. As I learn to do that better, show me your mercy and power in the life of my son.
Now a quick update on Baby Brother! I had an ultrasound this morning and he looks great! They estimate his weight at around 4 lbs. 6 oz., all his measurements are looking good at around 33 weeks, and more than once the sonogram technician remarked on how much hair he has! We got to see a 4D picture and decided he is going to have Canon’s mouth! My mom was able to come with me and get that surreal glimpse into our next miracle and it was a happy, special moment indeed. Thank you God! More than ever, I’m convinced that God IS the master conductor of our family orchestra here because he has blessed Canon with health and us now with the time and ability to concentrate on getting Baby Brother here healthy and welcoming him properly into the world with love and safety and attention.
If you’re in Amarillo, please consider coming to our volunteer meeting on Monday, July 11th at 7:00 at Southwest Church of Christ (on the Upcoming Events page)! We still need lots of help and lots of prayers for Canon’s campaign!
I’ll keep you updated on any new information! God bless you!
Chandra