We got Peanut's diagnosis of Prader-Willi Syndrome. We were devastated, but yet the grace of God was so over-whelming at the same time. I'd like to share a journal entry I wrote the day after we heard the diagnosis.
March 9, 2006 Today I am thankful. I'm thankful that Phillip was premature, because now he is getting therapy to strengthen his muscles and to help him to suck six weeks before he was even supposed to be born. I'm thankful he was in the NICU instead of the newborn nursery because the doctors and nurses had the experience to know there was something wrong with him besides being premature. I'm thankful that the doctors' trusted their instincts and ordered the tests even though they though they thought they would be negative. I'm thankful that Phillip was diagnosed at 2 1/2 weeks because now we have so much more time to prepare for the struggles ahead of us. I am thankful for the incredible support we have already received from our church. I am thankful for the enormous grace that God has given me today, because I have no idea how I am able to be thankful. Our God is so mighty and powerful, and yet he knows my name. He knows Phillip's name and has known him and loved him from the foundation of the earth. It is an honor to be able to worship such a marvelous God.
As I've mentioned before, our Peanut has Prader-Willi Syndrome. (Yes, I'm going to link every time.) The biggest health risk for those with PWS is life-threatening obesity. The obesity stems from a very slow and different acting metabolism and is coupled with an insatiable appetite. In other words, people with PWS will grow morbidly obese on a normal diet and always be hungry besides. Peanut has just started to gain weight quickly and we are in the process of changing our family's nutritional outlook. When it comes to the candy holidays, we parents already have a problem, and then comes Halloween, the worst of the candy holidays. The whole celebration revolves around candy, even the alternative events. Trick or Treat? bags of candy. Trunk or Treat? entire cars full of candy. So what are we to do? Walnut is well versed in the joys of Trick or Treating and has been talking about this Halloween since last Halloween, nearly salivating at the thought of so much candy. But, we can't have it in the house. We just can't. We can't let Walnut and Cashew have what Peanut can't have and there is only so much sneaking that we're comfortable with. Some one suggested to Filbert that we only keep a 1/4 of the candy we collect, but that is still too much for Peanut to have and we need to break the candy tradition sooner rather than later.
So to that end, we are going to an apple orchard for Halloween. Royal Oak Farm. We hope to make it a yearly tradition. Walnut, Peanut, Cashew and I went there last fall with my co-blogger Mandie, the unblossomed String Bean and our friend Fancy Aimee, who totally rocks on car trips with small children.
Most of you will know that my son, Peanut, has Prader-Willi Syndrome. He was also born 6 weeks premature and spent over 5 weeks in the NICU. One of the primary characteristics of PWS in infancy is failure to thrive so he came home with a feeding tube in his nose. We really wanted him to be able to eat on his own and worked diligently to that end, but one of the hardest things to do for me, was to pray about it. How could I pray that he would begin to feel hunger knowing that one day he would never stop feeling hungry. When he was about 3 or 4 months old, Filbert and I asked the elders of our church to anoint him with oil and pray over him, specifically that he would be able to get off of the NG tube. It was really a wonderful experience. A couple of the elders felt led to pray for healing for Peanut and they all prayed that the effects of the syndrome would be mild. It was about a month later that Peanut pulled his tube out and drank enough that we didn't have to put it back in.
However, keeping Peanut's weight up remained an issue until about a month ago and now the pendulum has begun to swing the other way. The weight is coming quickly, now and we're starting to keep a close eye on what he eats. Filbert and I decided that as we enter into this next phase of Peanut's life we should begin it much as we began the first phase. To that end, this Sunday, we have asked our elders to anoint Peanut with oil and pray over him again, that his weight will be able to be maintained and the hunger will not be too severe. Also, we're asking prayer for Filbert and I that we can have the discipline necessary to raise this special child. If anyone reading feels lead to include us in your prayers, we won't turn you down.
