July 24, 2006
July 24, 2006 | Updates
Well, we have passed the 1-year mark and are still going strong :)! July 19th came and went and nothing bad happened. I don’t consider myself a superstitious person, but I couldn’t help but worry that something bad might happen on that day again. Thankfully, it didn’t. (Silly me for worrying!) In fact, things were so busy that I actually asked someone what the date was at about 4 in the afternoon. I knew the date as soon as I asked, but it was a good sign that I wasn’t dwelling on it all day long. I did have a nice cry later that night when things were quiet and calm. Not necessarily a sad cry, but more of a release cry - a way to let out all that I’ve held in the past year. And it felt good.This past week has been good. Samuel got a beanbag for his birthday and today he finally sat in it and watched an entire movie (The Incredibles). He even fell asleep at the end. It seems to support him really well and should be a comfy new place for him to hang out. He also started purposely trying to move his hands when we sing “Twinkle Twinkle Little Star” or “Popcorn Popping”. It is so cute because he watches his hand move like mine and then I tell him what a good job he is doing and he gets the proudest smile on his face!
I have not seen any more seizures although I have walked in on Samuel a few times early in the morning and seen his arms twitching. But it only lasts a few seconds. So I am not totally ruling the seizures out. But as always, it seems they are changing. And I just hope they eventually go away.
Samuel started napping this week. AMAZING! It seems his myoclonus has lessened and he is able to fall asleep more easily. So he is taking about a 90 minute nap each day (as long as we keep things nice and quiet!)
Samuel is spitting up quite a bit and has been for a while. So I put him back on Prevacid to see if it made a difference, but it hasn’t. I have tried feeding him slower, feeding him less, taking his supplements out of his diet and everything else I can think of. Today, I fed him while he sat in his beanbag and although he did spit up a bit, it wasn’t much. So maybe I will try that now that he has a comfortable place to sit.
And the only other bad news is he is rubbing a bald spot on the back of his head from all his wiggling on the floor. One therapist suggested that many children they work with have buzzes because of that. But I am not about to buzz off that beautiful hair. So if you see him, just ignore the bald spot and be glad he has the curls!
That’s it for this week. I am going to continue this post below, but it will just be my own ramblings :)! So you can skip it if you don’t have time.
Love,
The Jewkes
As the 1-year anniversary of Samuel’s accident came and went, I thought a lot about what to post on the site. From the very beginning, we have felt that Samuel will get better and have done all that we can to help him in that endeavor. As part of that, I have done a lot of research on near-drown children and found many sites and much information about such kids. One thing that I have noticed is that ALL of their parents are waiting and hoping for and expecting a miracle for their children. Just like we are. And although these people may not have the gospel or the priesthood in their lives, they are good, good people and I believe that God is looking out for their children just as He is looking out for Samuel. But many of these parents are years and years out from the accident and yet they continue to end their posts with “still waiting for our miracle.” That really bothered me for a long time. Why did I expect to receive a miracle when these parents had already waited so long for theirs? Why did I deserve a miracle more than they did? Were we all having faith in something that wouldn’t occur? Were we all expecting something that was impossible? Was God giving us a sense of false hope? My answer: NO! Absolutely not!If I were to end my post with the same phrase each time or if I were to title our story, I would not title it “still waiting for our miracle.” I would title it, “in the midst of a miracle.” You see, Christ healed the deaf, the blind, the lame and many others. And Samuel was basically blind after his accident. But now he can see. He was basically deaf, but now he can hear. He was absolutely unaware and suffering every moment of his life. But now he is so aware of us and understanding all that we say and he is HAPPY!
Seeing those things, how could I ever say I was waiting for our miracle?!! We’ve already witnessed many, many miracles with Samuel. Just the fact that he’s alive is a miracle. And I still, most definitely, believe he will get better – much, much better. But we are not waiting for the miracle to occur. WE ARE IN THE MIDST OF IT!
So how far have we come in the last year? Here’s just a few examples: Samuel was not supposed to live through the first night and if, by some small chance he did, he would be a vegetable. A year later, he smiles at us literally everytime we smile at him.Samuel postured to the point that his heart rate was 200 beats per minute and he was breathing 90 times a minute. Two of us didn’t have enough strength to bend his arms or his legs. He would posture for up to 18 hours at a time and only stop when he was given significant doses of drugs. A year later, he only postures when he is mad at something and then only for a few moments. It seems to be an intentional thing now (an attempt to move) and not an involuntary one like it once was.Samuel did not seem to see us and would not track things with his eyes at all. A year later, his sight seems perfectly normal and he tracks things wonderfully. In fact, if you “fly” a toy across his line of sight, he will follow it in the direction it was going even if he can no longer see it.
There was not indication that Samuel could hear us. A year later, his hearing has been tested and is normal. (And we have to be very quiet when he is sleeping!)
Samuel could only sleep when given huge doses of medication (not even morphine was enough). His brain literally would not allow him to rest. A year later, he sleeps though the night (and takes naps) maybe waking once or twice for a minute or two, but otherwise, he peacefully sleeps without any medication.
Samuel lost range of motion in both of his arms, his left shoulder, both his ankles, showed signs of possible scoliosis and clenched his hands tightly closed at all times requiring him to wear arm braces, ankle braces, a back brace and rolled washcloths in his hands to bed each night. A year later, Samuel has regained the range in all his joints by his own movements when he is awake. He is constantly moving and wiggling and keeping everything limber. His braces sit in his closet getting dusty!
Samuel had myoclonus and strange seizure like episodes, which eventually turned into seizures. A year later, I have not seen any seizures for about 3 weeks and his myoclonus seems to be lessening.
Samuel smiled the first few days after his accident and then the smiles disappeared. A year later, Samuel smiles everytime we smile at him. And he is even starting to smile at extended family members and even strangers.
Samuel lost a considerable amount of weight from the posturing and came home weighing just 20 lbs or so. A year later, he is a whopping 28 lbs. (just kidding about the whopping part). We would be happier at 30 lbs, but we’re at least well on our way. Samuel had little to no feeling in his body. He did not react to getting IV’s or having blood drawn. A year later, he is beginning to be ticklish. Yea! If you tickle him just right, he will laugh. And what a glorious sound that is.Samuel bit his tongue, his cheeks and ground his teeth. He literally had pieces missing from his tongue. A year later, those missing pieces have grown back and he no longer bites himself and he only grinds his teeth when he is mad at something.Samuel could not swallow and drooled to the point that his drool cloths weighed more than his diapers. A year later, we only carry the burp clothes with us because he spits up sometimes. But he can swallow and does so many, many times a day as we try to feed him. (If only we could get him to accept things in his mouth better.)Samuel did not move his head on his own at all and very rarely did he move his extremities. A year later, he turns his head all the time including turning to sounds or to someone calling his name. And his arms and legs are always going!
We saw no purposeful movement from Samuel. A year later, he will play games with us like pushing a ball or a truck with his hand or pushing a switch or button to make a toy go. He is also learning to “push” mommy over with his feet and he definitely does so when asked.
Samuel made no sounds with his voice. A year later, he is making noise. And although I don’t know what he is saying, I hear different sounds each and everyday and feel that someday he will make those sounds into words to communicate with us.
Samuel came home on a ton of medications. A year later, he takes a vitamin, a suppository and a seizure med each day. I have had him on Prevacid this past week to see if it would help him spit up less, but I see no change, so I will probably take him off it. And he is down to one quarter of a Tranxene pill at bedtime. But I will probably take that away in a few weeks. His baclofen pump which was once up to 1500 micrograms a day is now down to 925 micrograms a day and we will continue to reduce that until we feel it necessary to stop.
On top of these things, Samuel is rolling over constantly. He is pulling his legs under him when on his stomach. He can lift the entire upper half of his body off the floor when on his side for many seconds at a time. He is attempting to take steps when we hold him in a standing position. And although he does not have great head control, it is getting better and he is working hard at it.
Things we are hoping for in the next short while:
That Samuel will…
learn to hold his head up on his own.
learn to eat by mouth.
be able to communicate with us.
be mobile in some way (by walking, crawling, operating a power chair, etc).
be free from seizures.
I can honestly say that this year has been the craziest thing ever. I never expected it and I hope to never do it again. If I could go back, I would save Samuel from falling in the canal. But at the same time, I can appreciate all that his accident has taught us. I am changed in a lot of ways and for the better.
I watched the end of the “Miss Universe” pagent tonight and one of the questions asked was “What is your biggest fear?” For the first time in my life, I didn’t know the answer because the meaning of fear is changed for me. I certainly don’t want to experience difficult things in my life. But I know that whatever happens, I can get through it. And in the end, I will most likely be better because of it. I learned that from Samuel. So I guess my biggest fear is that God thinks I have a lot left to learn :)! Let’s hope not!
What have you learned from Samuel? We would love to know!
Love,
Teresa
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