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We were very excited to be having Devon! He is our first child, and the first grandchild on one side. The pregnancy was very uneventful and easy. The last month I noticed that he wasn't moving as much, and the doctor monitored him once a week until he was born to make sure that he was okay. He seemed to be fine, just "quiet"
When he was born, he was perfect! His APGAR scores were 8 and 8, and he was the most beautiful baby I'd ever seen. :-) He had the best little personality, and never cried!
Around two months of age I noticed that when he was lying on his stomach he wouldn't lift his head at all-but he had great neck control for a baby his age otherwise. I kept waiting for him to do it, thinking he just didn't want to. At 3 months when he still couldn't, I called the doctor and asked him about it. The doctor said as long as he could lift his head off my shoulder and have decent control over it otherwise, not to worry. He could, so I didn't!
Then at 3 1/2 months, Devon went in for his 4 month checkup early. The doctor walked in, looked at him for maybe 2 minutes flat, then looked at me and said the words that would change our future. "His muscle tone is all wrong. I want to run some tests. You'd best be prepared that he probably has Muscular Dystrophy or some similar neuromuscular disease." I left there in a daze, holding Devon very tightly. I drove him to the hospital where they drew his blood for the MD test. The next week the results still were not in, but they wanted to do a CT-SCAN to test for brain abnormalities such as Cerebral Palsy. We did the scan, and even though they knew then and there what they had found, they couldn't tell us. They had to tell our doctor so our doctor could tell us what they knew right then! I was so angry. Finally, the results came in. No MD, and no brain abnormalities! We celebrated so much! A huge weight was lifted. We figured as long as he didn't have Muscular Dystrophy, we could handle anything else it could be!
I researched all neuromuscular diseases looking for Devon's symptoms. I couldn't find a perfect match. The doctor next referred us to a neurologist specialist. He too took one look at Devon, played with him for a minute, then sat down and said "I don't want to tell you this, but I'm pretty sure your son has Werdnig-Hoffman disease. Have you ever heard of it?" I hadn't. Once again I sat in shock in a doctor's office as he gave me the news that my son would never reach 2 years of age. Of course they had to run tests to be sure. After an EMG and a muscle biopsy, at 4 1/2 months of age, my son was determined to have, by no margin of error, Werdnig-Hoffman Disease-better known as Spinal Muscular Atrophy Type I.
Life since then has been pretty normal. We adjusted to the idea, and decided to keep him here! He is at this writing 7 months old, and going strong. He still eats on his own, sleeps great, has no problems breathing, and is a very happy, sweet little boy!
DEVON UPDATES February 20, 1999 Devon is 9 months old now. He doesn't eat as much as he should, and only weighs 15 lbs. 4 oz. But he can still suck, swallow, and doesn't choke or seem to have any respiratory problems. If I could just get him to eat as much as he needed to, he'd be in great shape! He normally now gets about 18 to 20 oz. of food and drink per day. We're working on it! He loves to smile and play, and his Daddy is his favorite toy. He has the biggest gray eyes and the best smile in the world! March 31, 1999 Well, not much new yet! Devon is now 10 1/2 months old. He still only weighs 15 lbs. 8 oz. and isn't gaining enough to keep his doctors happy. But he still can eat orally without any difficulties-it's like he just isn't hungry! He's been sleeping all night long, every night for a month or more now, too! He's always been good about that, but lately he's been perfect at night! He's now eating about 22-23 oz. of food per day. He can move his legs and ankles some, and he moves his arms and head a lot. He's talking a lot more now too! He's been saying "mama" for about 4 months now, but won't say "dada"! He chatters a lot, and talks to us a lot-in his own language. He's a very happy baby, and is doing just fine so far. We will have a big bash on his first birthday coming up here on May 16th! April 23, 1999 Devon has undergone some more testing-a swallow study which determined he is NOT aspirating, and a sleep study which determined that he is just fine at night! No breathing, oxygen, CO2, or other problems at this time. His eating is still the thorn in our side. Today he only ate 13 ounces of food. He is getting a lot of mouth "gunk" and it prevents him from eating properly! He doesn't choke on food and can still suck fine. I don't know if all this mouth gunk is from teething or what, but it is preventing him from being able to eat his food. He had gained weight and gotten up to 15 lbs. 13 oz. but is now back down to 15 lbs. 4 oz. We are discussing g-tubes again. I would love to be able to wait until after his first birthday since it is so close and I would hate for him to be sick or sore for his birthday. He may or may not have another one. Of course if his current eating patterns keep up we won't have much choice in the matter. But he's been laughing constantly for over a week now! He will just laugh and giggle and smile at us! He is such a happy baby-and cute too! May 31, 1999 Devon's eating has continued to be the hard time in his life. We made the decision to go ahead and get the feeding tube put in. So on May 11th he went into Methodist Hospital in Indianapolis, Indiana where he underwent the surgery for the g-tube. They let us stay with him and carry him into the "prep room". They let us stay until they put the mask over his face to knock him out. I had requested they not use a ventilator even under general anesthesia so that we might not have the worry of him coming off of the vent. They agreed to try, and did indeed succeed. Devon is such a little fighter! They did the operation with no ventilation required! The pulmonologist flat out did not believe them and said "I don't believe it! That's impossible!" Ha. The wait was terrible. We were sitting in the waiting room for only 20-30 minutes but it seemed like a lifetime waiting to hear how your baby is doing. Finally they came out and said he came through with flying colors and that it was one of the easiest g-tube placements they'd ever done! All that fear. He spent one night in the hospital and we took him home the next day. He was hooked up to every wire and machine known to man and I hated to see him like that. I took one picture for posterity, but no more. I don't want pathetic pictures of my son, I want him as he truly is-vibrant and happy! Since then he ate orally wonderfully the week after the surgery! The next week and a half he hasn't done so well orally. He is teething his entire upper gum at once and he is drooling like a crazy baby! He can't swallow with all that gunk in his mouth! So we got a suctioning machine to help and we are thankful for the g-tube because now we don't have to worry about him starving to death on us! We have a lot of trips scheduled for the next month or two-from Michigan last weekend to Kansas this weekend to Wisconsin the next and on and on. Devon is a great little flyer and a decent little driver. :-) I got video of him this morning moving his leg back and forth. He can still move arms and legs and head, and on one of his 1 year photos he was holding his own head up the whole time. We had TWO big birthday bashes for him this month! He got lots of presents and lots of love. He's quite the guy and we love him SO much!
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