Wednesday, July 14, 2010

So Far, So Good!

Ryder has officially been on his meds for a week now. So far, so good! We have seen no side effects. Tonight we increased to the full dose so we are continuing to pray that the medicine will only help him and not cause any adverse effects in him. I have another reason to be thankful I can stay at home with my sweet boy....I should know very quickly if anything changes in him since I pretty much spend every waking moment with him (which is a huge privilege). We're also thankful to have a good pharmacist for a friend, Kaysey. She told me today that it could be around 9 weeks before we see any results of the medicine working. 9 weeks sounds kind of close to eternity! She did say that if there were going to be any negative effects, we would likely see those soon. Still praying for none of that, but it's good to know that we wouldn't have to keep him on a drug for that long and then have to start all over again. Please keep praying with us that this medicine will be what Ryder's body needs and we don't have to go through a lot of trial and error to find the right thing for him.

Thank you for walking this road with us and for all the notes, calls, and texts this week. We appreciate the love, support, and encouragement so much.

Thursday, July 8, 2010

Tuesday is STILL Newsday

For the longest time we knew Tuesday to be the day that we would talk to Ryder's doctors during his stay in the NICU. This was when we would here any news they had to break to us. Thus, "Newsday" was born. In the recent months though, we've gotten used to our Tuesdays becoming normal again. Unfortunately, this past Tuesday, we realized that "Newsday" was still alive.

I took the morning off to join Beth Anne and Ryder at his first appointment with his Neurologist, Dr. Marks. We met him, Ryder smiled, drooled a little (a lot), and then the news. Dr. Marks told us for the first time that Ryder has Cerebral Palsy. He glazed past this huge word without even letting us catch our breath and began to discuss further aspects of his diagnosis. He continued to say life altering things like dystonia, medication to help his symptoms, and forever.

Ryder's official diagnosis is diplegic cerebral palsy. If you've been around him much, you may have noticed his legs getting stiff. This condition causes him to have increased muscle tone in his legs and the normal or decreased tone in the rest of his body can't compensate for his Hercules legs. Our first step after diagnosis is medication. He started on a small dose of a medicine with a huge name last night. The goal is for it to help him get his muscles working together so that he can function like any other baby. A possible side effect of the medicine is that it could cause him to become really irritable, in which case we would discontinue the medicine and the doctor would go a different route. We're praying that we don't have to see what that would be.

This may all be hitting you like a ton of bricks that Ryder has more issues to face in his life than we originally expected. If so, please look through our blog at his smiling face. That smile is evidence of the grace from our Lord that gave Ryder his middle name (Gray). We look into his precious eyes everyday and see that he is happy in spite of artificial additions to his body (his shunt) and all of these five dollar words. Even now he is in the floor rolling around when he supposed to tired and even asleep in his bed. Why? Because he is very, very happy. God has answered so many prayers and blessed us with a happy boy.

Though I can write this (and we do truly believe this stuff) it's still hard. I first began crying over the reality of my son's diagnosis over crispy thai beef at Pei-Wei. For some reason I thought we were all out of the woods and that aside from adolescence, the worst was over. I think that the enemy (satan) probably wanted me to get comfortable with life so that this would wreck my, then subsequently, my family's world. But we still have the Holy Spirit and are thankfully still grounded in the truth of the Gospel. We aren't promised an easy life. If anything we are promised suffering. But we are promised abundant life, which I witness and experience every time I walk in from work to see my beautiful wife feeding my smiling son, covered in his favorite orange tinted vegetable. (P.S. all of Ryder's favorite foods have carrots in them, which makes his skin look tan. The dude is practically an Oompa Loompa.)

So... what we need. We need, more than anything, for you to look at our lives, for you to look at our son's life and see that God's love is bigger than you can comprehend. That His mercy and goodness are so immeasurable that you are without words. Please, from the bottom of our hearts, see Jesus' glory in what He has done in us. Through all of this we are more in love with our great God than ever. Maybe that was His plan for all of this.

Please pray for our boy. Pray that his new medicine will create harmony in his life rather than turmoil. Pray that his limbs will relax and that his abdomen strengthens. Pray that his mind will be sharpened and that all of his struggles will only be physical. Pray that he always finds the courage to wake up and smile at his mommy and daddy. Pray that God continues to be glorified in all three of our lives as he has so far. We love you and praise God for your friendship.