Archive for February, 2006
February 27, 2006
February 27, 2006 | Updates
I will be SO GLAD when winter is over! This winter, we have been through so many colds and flu’s, etc, that I have just about had it! Samuel woke up yesterday with an infection in his eyes. Ben woke up with a cough and runny nose. I coughed a little throughout the night, and Wesley is coughing also. I just about kicked something ;)! (Just kidding, but I was pretty mad since it’s just been a week since we got over our last cold.)
Samuel was really sleepy, all day Sunday. And the goop in his eyes just kept getting worse. Having had 4 kids, I’ve seen those puffy, yucky eyes before and decided I wasn’t waiting to take Samuel to the doctor because it was clear he had an infection. So I called the doctor and took Samuel in to see him yesterday afternoon. His ears, throat and nose all look fine. And his lungs sound good. I’m surprised that the eye infection would make him so tired, but it was all good news. So we left with a few eye drops, and his eyes look MUCH better today.
Otherwise, our week was pretty normal. Samuel had therapy everyday. And we even got adventurous and took him on a little outing this week. Tom’s cousin (just 31 years old) passed away the day before Valentine’s. She had some pretty painful health problems, so although it was hard to hear that she was gone, we are certain she is happier now. Her family held a gathering for family and friends Friday night in Providence just a few miles from our home. We decided to see if Samuel would enjoy it. We drove separately and I planned on staying only about 30 minutes - being pretty certain that the noise and commotion would be too much for Samuel.
Surprisingly enough, Samuel seemed to like it. He just sat and looked around and watched everyone that came up and talked to him. He even took a nap in the middle of all the noise. He did very well and we were able to stay for about 2 1/2 hours. The only downside was that he screamed in the car all the way there and all the way home. I’m not quite sure why he hates the car, but he definitely does. In fact, as I tried to strap him in his car seat for the trip there, he totally freaked out. He was getting himself all twisted in the seat and pushing against the straps so hard that I was afraid he was going to hurt himself. So I very strongly said, “Samuel, you’re going to hurt yourself! Do you want to get out?!” He INSTANTLY stopped posturing and held perfectly still while I got him out of his car seat. He understands so very much, it is amazing.
Since Friday night went so well, we carted Samuel along with us Saturday afternoon for a memorial service. That, however, didn’t go as well. He was really good, but he wouldn’t let me sit down with him, so I stood and rocked him in my arms for about 1 1/2 hours during the service. He finally fell asleep for the remainder of it. Thank heavens - because my back was killing me! After the service, he soon got upset, so we brought him home. I think the combination of the 2 activities in 2 days was too much. But he did better both times than I had ever expected, so that is a good thing. Somehow, though, we have got to get him to be content in a stroller or wheelchair or something. He is just too long and heavy and wiggly to hold for more than a short while - especially if he thinks we need to stand and hold him!
Well, today he is driving me a little batty. I’m not really complaining, just sort of at an impass with him right now. He does not like to hold still. He is constantly wiggling and moving and arching and grunting and trying, I think, to do SOMETHING. He can move all around the floor, but not in any purposeful direction. He hates to sit in anything and he is always posturing, but it seems to be his own doing. I finally started putting him on his stomach as much as he will tolerate. It seems to help. I am hoping he will figure out how to scoot or move or crawl across the floor. I would rather be chasing him around the house than have him unhappy all the time that we can “get” anywhere. Let’s hope he figures it out. But it will take some doing since he does not realize he could push himself up with his hands and he usually pulls one leg under him and points the other one towards the sky. He also tends to get a lot of rug burns wiggling around the way he does. We’ll just have to keep an eye on him.He is still making lots of good sounds with this voice. And he is keeping his bolus feeds down better, though he does still spit up a bit.That’s it for now. Sorry the update was so long this week - I tend to ramble :). Hopefully, we will start hyperbarics again soon. We need to get another 40 treatments in sometime soon.
Thanks to everyone for all the help and support. Please keep praying. Prayers are what help the most!
Love,
The Jewkes
February 20, 2006
February 20, 2006 | Updates
It’s been a slow week. Samuel had a fever Sunday afternoon until Tuesday. It hovered around 101.5, so I didn’t give him much tylenol, hoping that his fever would help his body fight off the infection he had. He was pretty miserable, sleepy and a little upset to his stomach. He threw up several times during his little bout of flu, and we finally had to slow down his feeds and give him just a little at a time throughout the day. Overall, he did really well. It was definitely a far cry from the last time he had a fever. THANK HEAVENS!By Thursday, he seemed to be feeling better, so he had one therapy session at which his physical therapist was really impressed with how hard he worked and how much more head control he had gained. He still is a long way from being able to just hold his head up on his own, but it’s getting better for sure. By Thursday night, I could tell that Samuel was getting a head cold, and so was I. Friday morning, I was totally wiped out and I spent the next 2 days with one of the worst head colds I can remember. Samuel, fortunately, didn’t get it as badly as I did. He was pretty miserable, but he never got much of a runny nose or a congested throat. But since I was feeling so under the weather, we didn’t do any therapy and just slept those 2 days away.
Sunday was much better, and I think by today, we are both well on our way to recovery! So we are just slowly working Samuel’s feeding schedule back to where it needs to be. After a week of smaller bolus feeds, it will take some time to get his stomach used to things again.
We didn’t see many smiles most of the week, but the past two days, they have returned since he is feeling better. And a couple of days ago, his dad got him to laugh a BUNCH of times in a row. I was there, and it was SOOOOOOO CUTE and SOOOOOOO FUN to see. He was playing a little game with his dad and after smiling a bunch of times, he just couldn’t hold it in and started laughing instead!
Well, that’s about all the news on Samuel this week. I do have a bit of other news. Just another little bump in the road that our Heavenly Father has seen fit to place in our lives right now. Despite being on birth control and hardly ever seeing Tom, I am pregnant. I was pretty upset at first, because I had decided we were done having kids and I was very content with that because I wanted and needed to spend so much time with Samuel. I’m also pretty protective of Samuel’s place in our family and I definitely didn’t want him to loose the place of our “baby”. But God thought otherwise. And after reviewing everything and literally seeing how nearly impossible it was for me to get pregnant at the time I did, I have decided it must be meant to be for some CRAZY reason that I may not understand until the next life :)! So, we’ve accepted it and are even excited. Our Ben isn’t home much anymore since he started school, so maybe this baby is meant to be Samuel’s playmate (and maybe more incentive to get well) over the next few years. I don’t know all the reasons, but we do feel very good about it.
Oh, yea, and it’s a boy! Silly, huh? That’ll make 5 boys for us - no girls. But in complete honesty, we’re getting too old for new things and a girl would scare us (at least me) to death. So we are perfectly happy sticking with what we know. Besides, I tease Samuel that on his little trip to heaven during his accident, he must’ve decided he wanted a little brother to play with if he was going to come back to this earth. And it’s no surprice he didn’t pick a girl because his 6 year old brother has indoctrinated him for years on the “fact” that “Dirls are dross!” (Ben can’t say his G’s too well!)
So this baby is due the first part of July, making July a very emotional month - a new baby, Samuel’s 3rd birthday and the 1 year anniversary of his accident. But think of all the wonderful things we are learning from this!
So keep praying for little Samuel!
Love,
Us
February 12, 2006
February 12, 2006 | Updates
Some of you may not have noticed that I posted twice last week. If not, visit the photo gallery and you can see a few pictures of Samuel smiling.I do have some not so hot news to report today. Samuel was really sleepy this morning and then took a long morning nap. That is unusual for him since he rarely sleeps more than 10 or 15 minutes at a time during the day. Around noon, I realized that his forehead was warm and sure enough, he had a temperature of about 101.5. He has held that temperature all day and to say the least, we have been a little worried after the whole ordeal the last time he ran a fever. He has definitely been more sensitive to touch, more easily startled, more irritable and very sleepy all day. I’m not sure what is causing it. He did throw up tonight about 8:30 p.m. but it had been about 3 hours since he had been fed, so it wasn’t too bad. We’re hoping it’s just a short lived and small thing. He is still awake right now, though, and just seems too uncomfortable to sleep, so it may be a long night.
On to better news, though. I took Samuel to see an endocrinologist (sp?) this week since I can’t seem to get any answers from his rehab doctors on the results of his parathyroid tests. The doctor we saw reviewed several tests with me. Basically, the calcium in his blood is slightly high, but his parathyroid hormone levels are actually a little low and the test they run to see if his bones are giving up calcium came back negative. So it seems that his parathyroid is not taking calcium from his bones. So why his calcium in his blood is a little high, they don’t know. But his vitamin D levels also looked fine, so we are just going to recheck things in a few months to make sure nothing major has changed. That was good to hear. (Also, his rehab doctors said his albumin was high, but I saw that test myself and it is totally within the normal range. So, I’m not sure what they meant??)
Samuel is still moving around a lot. It is when he is posturing though. But it is getting so I can’t really leave him alone much at all. He will roll himself on his stomach and kick his legs (because he’s mad) and scoot himself across the floor. And tonight, I put him in his bed with the pulse ox monitor on and the baby monitor on and him surrounded by pillows thinking that would be sufficient. But when I came back, he had rolled on his stomach, moved himself to the top of his crib (away from his pillows), turned himself across the short length of the crib and had both his legs sticking through the slats! Aaaaaahhhhhh! I’m not quite sure if I should be happy or sad about it :)!
The best news is still the smiles. And they are coming at times that make us feel like he really still understands what we are saying. There are two stories I want to share with you. First, the other day, Samuel was sitting in his tumble form chair and Ben came and asked me to comb his hair. Now you have to know that before Samuel’s accident, when I would comb all the boys’ hair, Samuel would have to be first, and we always obliged him. So I sprayed Ben’s hair with the spray bottle and started combing it and happened to look over at Samuel. His face was scrunched up and little tears were streaming down his cheeks. He wasn’t posturing or upset, but he was crying. I said, “What’s wrong, baby.” And then I asked him if he wanted his hair combed. So I sprayed his hair and combed it while he calmly sat and let me. When I was done, I said, “You just have to tell Benny that it’s your turn.” And he broke out in a smile!
Second, I hollered downstairs to Wesley to get his chores done. (Seems like I’m always doing that :)) And when I turned back, Samuel was watching me. Well, I remembered how funny he thought it was when I was lecturing Tanner the other day, so I started in with, “You tell Wesley to get his chores done. He’s sure a pain in the butt!” Now I have to interject here and tell you that around our house, Tom has made it an “honor” to have your butt kicked. That means that if he says, “Who wants their butt kicked?” all the kids run over and fight over who gets to have Tom kick them in the butt. Strange, I know, but Samuel used to run over there with all the other boys and fight for his turn. So the I asked him if we should kick Wesley’s butt, and he broke out in the biggest grin I have seen yet. Well, I called the boys up and we would ask Samuel if we should kick their butts and he’s smile, so I’d kick them in the butt and he’d smile again. It went on for about 10 minutes until I’d smiled so much my face hurt! It was SO apparent that he understood. And for the past 3 or 4 days, all I have to say is, “Mommy’s gonna kick your butt!” and he will break out in a grin. It’s so amazing that he remembers and OBVIOUSLY understands it all. WOW!Well, I need to end this, but wanted to give you a link to a story that was on the news a few nights ago about a 22 year old girl serving a mission now who nearly drowned in a Sandy creek when she was 2 years old. She is in the Guiness Book of World Records for being under the water the longest and surviving. It’s an amazing story that she told herself and then off she walked tracting from house to house. What a miracle! http://www,kutv.com/video/?id=12876@kutv.dayport.com
I also wanted to quickly share with you about a boy that attends school with my sister (a senior in high school). He fell in a river when he was 3 years old and was under the water for 30 minutes. He now attends mainstream high school and my sister went to school with him for 6 months before she learned of his accident. She had no idea anything was even wrong with him because he walks and talks just like the rest of us. His mother said he postured horribly for 6 months before he even began to stop. His heartrate was often 300 beats per minute and they have pictures of 6 people trying to hold him out of his posturing to give him some kind of a break from it. His mother said it took 5 years before he could really communicate with them. But now, he can do nearly everything for himself.
It is amazing to me that of all the stories I have read (close to a hundred), the 2 most miraculous stories are of children who were blessed by the priesthood. The priesthood is a powerful thing. And I don’t exactly know what God has in store for Samuel, but I know that whatever progress he makes, it will be because of the blessings he has received.
Well, Samuel is crying, and I’ve rambled long enough. Keep praying! It makes all the difference.
Love,
The Jewkes
February 7, 2006
February 7, 2006 | Updates
Ok, quick update. Nothing bad. Just wanted to let everyone see one of those beautiful smiles we’ve been seeing from Samuel. (See the photo gallery for some new photos.) But I have to explain the “contraption” he’s in. Insurance bought us a tumbleform chair for Samuel. But, of course, he hates it because he hates to sit up. And if you try to strap him in, he freaks out. (I told one of his therapists that and they tried it anyway. I bet they won’t do that again! :)) Anyway, I figured out that if you don’t strap him in and you hitch his left ankle underneath his right knee, he’ll stay in the chair for a little while. But everytime he looks left, his head flops over and he almost falls out because, well, he isn’t strapped in (stinker)! So my first thought was ACE BANDAGE! I’ll just wrap it around his head to keep him upright. Well, that was great until his head flopped anyway and then the ace bandage was just covering his eyes. So then I got more creative - baseball cap! So I put the cap on his head to keep the ace bandage from slipping down off his forehead and TA DA! It works! So that is what he’s sitting in and what’s strapped around his head.Now, when I put him his chair tonight and Ben and I started talking to him, he started to smile. So I sent Ben off for the camera. When Ben got back, Samuel smiled over and over and over. My camera wasn’t fast enough to get them all, but there were about 10 in a row. It’s like he knew he was the star and he’d better smile for the camera. Anyway, just some good news we wanted to share with you all.
Samuel has also slept better the past 2 nights - yea! Most days are hard in one way or another, and I don’t know if that shows thru in our posts. But we just wanted to share some good news with you. Hope it brightens your day, too.
Love,
The Jewkes
February 6, 2006
February 6, 2006 | Updates
Sorry for the late update this week. Today was a little hectic because we had to go to Salt Lake for doctor’s appointments and to have Samuel’d pump refilled.This week has been a harder one. Samuel was more upset and posturing more than the few weeks before. He also hasn’t been sleeping well. Some nights, I think I see every hour on the clock, but I tend to loose track after 10 or 15 times of getting up with him. For some reason, he has been waking up often during the night. And then he postures so badly, that his monitor goes off every 5 or 10 seconds (not that I could sleep with his screaming anyway). And then he wiggles the cannual out of his nose. And despite the fact that I basically surround him with pillows to protect his arms and legs from the bars of the crib, he can push himself clear up to the head of the mattress and then smash his face against the bars. Aaaaagggghhhh! I can’t just sit up with him all night, but when I don’t check him often, I always feel bad because his crying ends up being for some good reason like that. Oh, well. I do what I can.
His posturing still consists of arching his back, throwing his head to the right, pulling his left arm tight to his chest, hyperextending his right arm, bending his right leg and hyperextending his left and GRINDING HIS TEETH! And boy, oh, boy, when he wants to, he can certainly scream. He really let us have it as we tried to watch the last half of the SuperBowl on Sunday. But he finally settled down when I got that left leg bent and started giving him a play-by-play. Just be glad I’m not the national announcer. “Ready, set, go, run, run, run, throw the ball, catch it! Oh, no, they fell down and bonked their heads! They have a big owie! And that guy needs a hair cut!”
We brought his Keppra down about a 1/4 of the way and have stopped for a bit. He is having more myoclonus, but it’s not severe. However, we are wondering if it is contributing to his not sleeping. So we are waiting a bit to see if things level out. We are also still plugging along on his new diet - slow but sure. He is still getting lots of Pediasure, and we will probably continue much of that to make sure he gets enough calories. But we are adding some good, “real” food just for good measure to make sure his body is getting lots of nutrients.
HOWEVER, the smiles are STILL around. They don’t happen every day, but most days, we see at least a few. I’ve started calling them Billy Idol smiles. You know how Billy Idol just raises his lip a hair for just a split second when he does his “look”. Well, that’s what Samuel’s smiles are like. Just a quick upswing of the sides of his mouth, a fast glimpse of his teeth, and then it’s gone. So you have to be watching to see it, but they are SO CUTE! I got one this morning when I said, “Good morning, baby.” And on our trip to Salt Lake, I stopped at a drive thru for lunch. As I sat in line, I looked back at him and said, “Hi, baby.” and I got another one. Daddy even got one tonight as he talked to Samuel while Samuel sat on my lap. They are so great.
I guess everything else is good. Our insurance does want us to switch to outpatient therapy in March which is ridiculous. Samuel hates the car and can’t do more than an hour of therapy at a time. That will require a couple trips a day to Providence to do therapy in a strange place with lot of noise after a screaming trip in the car. I don’t think so! We’ll spend our whole hour just trying to calm him down. So that’s my next project is to convince them that he’s not ready for that.
No further news on Samuel’s parathyroid. But I’ve taken it upon myself to schedule an appointment with an endocrynologist (sp?). I’m sick of waiting on our rehab doctors. I also scheduled an appointment with a neurologist since we’ve never seen one. But those appointments are weeks away.
Well, keep praying. We sure can tell you all are!
Love,
The Jewkes
