Archive for October, 2006
October 23, 2006
October 23, 2006 | Updates
Well, this week we kept with the “famous Mr. Samuel” theme from last week! Recognize that guy in the picture with Samuel? I’ll let you know who he is later on in the post.
School lunch week went well. I went to lunch with Ben one day and Wes another. Samuel & Nathan tagged along and we all had a good time. Lunch was great both days - much better food than I remember eating when I was in school!
We also did parent teacher conferences. I can almost tell you what the teachers will say at the first conference of each year. Ben is so sweet and a pure joy to have in class, but a little behind in reading still. Wesley gets along well with everyone, does great work, but has a hard time getting things in on time. Tanner is a great kid, good example, but likes to be a little chatty at times. Funny how those same themes carry on from year to year. But I certainly can’t complain! I have great kids! And Samuel’s teachers just reiterated what we had talked about the week before and how impressed they are with him.
Speech therapy went great this week with Samuel eating enough of an m&m cookie to make a nice big mess. It was one of the first times we’ve seen him actually enjoy eating something. He seems to be acquiring a taste for chocolate. Go Samuel! Physical therapy was amazing. That last reduction in Samuel’s pump gave him HUGE improvements in his head and trunk control. I noticed it last Sunday in church when he was sitting on my lap literally “working” at his head control. He was holding up his head better than I’ve ever seen since his accident. And his physical therapist couldn’t believe it when we went in. I think we really blew his mind at the change Samuel made in just the last week!
We also spent a little time at another therapy clinic letting them meet and assess Samuel. They seemed like good therapists and now we just need to do a little playing with the insurance and see what they will and won’t cover for Samuel.
Sunday, Ben & Wesley were in the Primary program and it was so cute as they stood up on the stage and sang. Samuel was VERY wiggly and not in the greatest mood for that hour. But every time all the kids would sing, he would sit perfectly still and listen. Then when they would stop, he would start fussing again. During one of the songs, the kids held hands and raised their hands up in the air for certain parts of the chorus. Every time their hands would go up, Samuel would smile and once he would smile, Ben would start smiling and could barely sing. It was so cute! Ben got into it so much, that he nearly ripped the arm off the poor kid next to him (his buddy, Nate)! And those eye doctors say they don’t know what Samuel can see?! We were sitting halfway back to the back of the chapel and Ben was clear up on the back of the stage. Samuel could see him just great!
So, that was our week! Oh, yea, almost forgot the “famous” part. (Just kidding!) Extreme Makeover Home Edition (my favorite TV show) built a house in Logan this past week. We were lucky enough to be there on Saturday when they offered a tour of the VIP silent auction to those willing to make a small donation to the Pauni family. We took them up on that opportunity in a heartbeat.
Once we were in the VIP tent, we were able to donate some log furniture to the silent auction and get some passes to return the next day. While there, I suddenly noticed one of the designers from the show, Tanya McQueen, walking through the crowd. She came directly up to Samuel and sat and talked to him for about 5 minutes. He was all smiles, of course! I was in too much shock to realize I should be taking pictures, but a nice lady came up to me later and said she had taken some and would get some to me. A bit later, Preston Sharp and Tracy Hutson, two other designers came through and we were able to get his signature. We waited a while for Ty Pennington (the star of the show), hoping he would be there for the handoff of the keys to the house, but he never showed. So we watched the furniture be moved into the house and then headed home.On Sunday, we went to church and then headed back to try and see the “move that bus” moment. But we missed it by about 45 minutes. We hadn’t really tried that hard to get there in time, because we figured with Samuel’s wheelchair and the crowd, it would be nearly impossible to see anything anyway. But we later found out that there had been a specific place up front designated for those in wheelchairs and their families. Live and learn! We were pretty bummed we’d missed it. But later that day, Ed Sanders (who is now my favorite designer) spent literally hours in the crowd signing autographs and taking pictures. We waited for quite a while to get Samuel’s picture with him, and Samuel eventually fell asleep. But, apparently, Ed felt the same way and took a little nap with Samuel! (Thus the “sleeping” picture.) Cute, huh?! We waited again to see Ty, but he didn’t appear and the kids were getting cold, so we headed home.
It was pretty fun and definitely a “big deal” for our little town of Logan. It will be interesting to actually watch the show when it airs on November 26th. It’s supposed to be a 2-hour Thanksgiving Special. Oh, yea, when Tanya McQueen was talking to Samuel, they filmed the entire thing. Maybe, just maybe, our little boy will be famous! I guess we’ll just have to watch and see.
Until next week…keep up the prayers!
Love,
The Jewkes
October 17, 2006
October 17, 2006 | Updates
So this week was hectic again, but that’s nothing new. Sometimes people tell me they can’t believe how hectic our lives are. But sometimes, hectic is OK because it doesn’t give us much time to think about things that aren’t quite going our way.
Anyway, we had another meeting with Samuel’s team at preschool because he has basically reached all the communication goals they set for him at the beginning of the year already. I knew they were too easy for him when they set them, but they didn’t know Samuel and I felt it best to just let them be surprised at what he can do. And they are! They wanted him to be consistent at activating switches on the computer and choosing things with eye gaze and to attend to the teacher and stories and songs and such. He has already far surpassed anything they expected during the entire year. So that is great!
We talked about a lot of things. They are going to work with Samuel on learning the meanings of more words just like any normal 3 year old would be doing - colors, numbers, letters, shapes, vocabulary, etc. They are also going to work on a system where he can choose things through eye gaze, but in a more complicated way. For instance, they will have 3 or 4 categories for him to choose from like toys or food or music and then once he chooses a category, then they will let him choose a specific thing within the category. But the categories and possible options will always be the same so he will get used to using the system and then they will work it into a computer program so he can make choices with a computer switch. It should be pretty neat.
We also talked about a bunch of other options using the computer to communicate. There is a program called “eagle eyes” that we were referred to by the parents of another near drowned child that uses electrodes on the face to track eye movement and then moves the pointer on the screen based on where the person is looking. There are other programs where they place a small device on your forehead and you move the pointer by moving your head. Or they can program a camera to follow your head movement and move the pointer based on that. There are a lot of options, and we will definitely try them until we find a good one for Samuel. Not only will it allow him to communicate, but it will allow him to play regular kid computer games which I think he will love!
The greatest thing is the district can loan us these things to try for 30 days at a time to figure out what works best for him before we invest in it. I told them I thought we should wait a few months and give Samuel some more time to work with the eye gaze board and then try these things out. The things I love is that his teachers thought I was nuts and wanted to try them RIGHT NOW! They said they are blown away by Samuel and just know he is in there and want to find him a way to get out. What a great thing to have them see the potential we see in him!
Outpatient therapy was OK. I still like our PT, but I don’t love our new OT. To be honest, she was making ME sleepy :)! So I called a new therapy place in town and we are meeting with them this Friday to see what they might be able to offer us. It’s a little farther away, but if we’re going, we might as well be seeing benefits from it!
Last of all, we went to Bountiful to see our rehab doctor and have Samuel’s pump lowered again. He is now at 700 micrograms per day – less than half his maximum dose of 1500 per day. And we will definitely continue to come down. She said he looks great. We talked a bit about his seizures and I told her I have actually been increasing his Keppra a bit to try and combat them. It’s not that I think they are dangerous. But I do know that he hates them and I hate watching him deal with them all the time. Besides, I don’t see that the Keprra affects him cognitively. So I think for now, increasing it is a win-win situation.We also discussed his lack of trunk and head control and we both feel that coming down on the pump should help that. I was concerned that he always seems to pull to the right with his abdominal muscles. She agreed and said that he is forming a slight curve in his back. Hopefully, we can strengthen his left side. If not, we may have to botox the right side to keep the curve from happening. But for now, we will just keep an eye on it.
She also indicated that although all his joints look good – including his hips and ankles – he is rolling in the arches in his feet a bit. So we will look for some arch supports to keep that from progressing. I’m hoping to find some kind of support that won’t require him to wear shoes on top of it because he gets such great traction with shoes on, that he really gets to flopping around the floor and banging his head on things!
And we talked about switching his formula to Pediatric Compleat instead of Pediasure. I have heard from several mothers that their children tolerate that better. And Samuel still throws up and spits up a lot and just is not keeping weight on. Pediasure is mostly made from soy beans where the Compleat is supposed to be made more from “real” foods. The doctor said the problem with the Compleat is it is expensive. Ah, ha! So that’s why my son is on soy bean formula. Seems so stupid that the kids who really need the nutrition the most get it the least! Oh, well, I guess I can just be thankful that Samuel has an “intolerance to Pediasure” so I can convince our insurance to pay for the Compleat. Hopefully, it will do all I’m hoping it will.
So that’s our week. This week is school lunch week and parent teacher conferences, so we’ll be busy again. One last interesting note…our rehab doctor emailed me a few weeks ago asking for pictures of Samuel before his accident, right after his accident, during recovery and now. She was speaking at some convention and wanted to talk about alternative therapies. She wanted to use Samuel as an example of the possible benefits of hyperbaric treatments. Of course, I stayed up late that night and got her all the pictures she could possibly use because I have been so impressed by what hyperbarics have done for Samuel. Well, at our appointment, she thanked me for the pictures and said her lecture went well and she used all the information I had sent her. Pretty cool, huh? Our little guy is not only a miracle, but a famous one! (Well, sort of!)
Keep up the prayers! We sure appreciate them. And no colds yet! KNOCK ON WOOD!
Love,
The Jewkes
October 9, 2006
October 9, 2006 | Updates
Just a quick update…didn’t want to skip a week again, but I don’t have much time. First, Samuel’s love for school amazes me. As I climbed in bed last night, I said to Tom, “I’m so glad tomorrow is Monday.” Then I did a quick double take and said, “What did I just say?!” I don’t think I’ve ever said or thought that in my life. But Samuel is just so much more content during the weekdays when he has school and Kaylee working with him. He really seems to need all that stimulation and clearly misses it over the weekends. So, as usual, he was all smiles and jabbering away this morning as we headed to school!We also started outpatient therapy this week. Our sessions will be much more limited now. So we’ll just have to learn at the sessions we do get and do the work ourselves at home. This week, they mostly just evaluated Samuel and set new goals for him. But we’ll probably have about 3 hours of therapy each week until the end of the year and then it will drop off to about 3 hours a month for the next year.
Samuel has been really wiggly the past few days, which is driving me nuts, but is probably a good thing. He mostly just seems to really want to MOVE! By bedtime, he’s really worked up. It sure would be nice if he could figure out how to pull or push himself forward. Let’s hope that in time he will.
Well, not too much more to report. We’ve been valient in keeping Samuel’s little hats on and his hair is growing back. And he even got school pictures taken a while back that turned out pretty good, so I’ll try to get one posted. I’m getting excited for his wheelchair so he can ride the bus home from school. He seems to want to get on the bus so badly each day when the other kids do. And his teacher says the other kids at school have really started to interact with Samuel and worry about him when he’s not there.
So things are going good as we head into this winter season. I’m not looking forward to the colds and sickness that will almost invariably head our way. Let’s pray they don’t effect Samuel or Nathan too badly.
Keep up the prayers. We sure do appreciate them.
Love,
The Jewkes
P.S. The song “I can only imagine” just came on the radio and brought so many emotions to my heart that I wish to share with you. This week in church, we were asked to share times in our lives when others had served us in remarkable ways. There are so many ways that we have been served in our lives. From our parent to our siblings to our children to extended family to friends and neighbors. I still come home to desserts or dinners that people I hardly know have dropped by our home. I will be eternally grateful for all that has been done for us and pray those who have done such things will be blessed 10 fold for them. You are all remarkable people!
On the other hand, I feel so often that people look at Samuel and our family and they marvel at how we serve Samuel. I need to set that straight. I have never in my memory been served the way Samuel has served me and there is nothing I can ever do to repay him. He has sacrificed so much in this life to teach our little family things that we could have learned no other way. His smile and countenance is a bright light in any moment of any day. He touches our hearts with every sound of his voice and every smile on his face. I truly can’t explain it. But it is not us that serve him, it is him that serves us. We love having him with us and almost feel selfish keeping him for our own benefit. But what a great learning experience this has been in our lives! And although we miss the way he was dearly, we are grateful for the good that we have been able to find in such tragedy. And we are grateful for a little boy who lights our lives. We love you Samuel!
October 2, 2006
October 2, 2006 | Updates
Sorry for the missed update last week. Things have been hectic. The girl I had helping at home quit, so I had another girl I know fill in for a few weeks. When she could no longer come, we had grandma come for several days to help out. Now that grandma is gone, we are trying to get someone new hired. At the same time, we sort of revamped all the office help at Tom’s business and I have been managing that change over. So for the last few weeks, I’ve pretty well been working full time. Thank heavens for grandma and Samuel’s aunt Kaylee who is doing his daily therapy with him. They have basically taken care of Samuel and the other kids the past few weeks.We went to the NACD (national association for child development) in Ogden last week to get a new program for Samuel’s home therapy. While we were there, I put Samuel on the floor and then asked him to roll over on his stomach to show everyone that he can do it. He started working at it right away and within a few minutes had rolled over. It was neat to see him do in on command. And I’ve tried it a few times since and he does it everytime. Cute kid!
The NACD evaluated Samuel and then showed me a video clip of another little boy who was very much like Samuel not too long ago. He obviously had cerebral palsy, but he was basically army crawling across the floor! So the taught us the things they did with this boy to teach him to crawl and we will do those with Samuel. Let’s hope that he’ll figure it out too!
School is still going good for Samuel. As long as he sleeps well at night, he is able to stay awake at school. And his teachers are really great with him. I always get a special grin from him when I tell him we are going to school. It’s obvious that he loves it.
This past Saturday, Tom was gone with the 2 older boys deer hunting. I had to go to work and took the 3 younger boys with me. So it was me, Ben (age 6), Samuel & Nathan (age 4 months). We spent a few hours at work and since everyone was being so good, we decided to go to Shopko. Ben had been winding Nathan’s swing the day before and had wound it the wrong way and it had broken. Nathan loves his swing more than any baby I’ve ever known, so I was dying without it. So we headed off to Shopko.
Ben pushed Samuel in his wheelchair, while I pushed Nathan in a cart. We got a swing and some clothes for Samuel and even a Halloween costume for both Samuel & Ben. We were there quite a while and everyone was being so good, that we headed to Walmart. By the time we got home, it was 6 pm and we had left at house at 9 am. And amazingly enough, we had all had an enjoyable day together without much fussing or crying. I guess it just reminded me of how life used to be, and it was nice to be almost normal for a day!
Also, while we were in Walmart, we met a lady with a little 4 year old girl whose brain had stopped develping in utero. She was a cute little girl and I talked with her mom for quite a while about this and that. As we went to leave, I asked the lady her name and when she told me I realized I had her name and number hanging on Samuel’s wall at home. Someone had given me her number months ago and told me she might be a good contact because she lived close-by and had a handicapped child. Small world, huh?
So that’s about it. Samuel has stopped throwing up as much or as easily. His myoclonus is still bad just for the 5-10 minutes after he wakes up. He’s sleeping better at night since I started leaving the lamp in his room on while he’s falling asleep. And he’s back up to 28 lbs (which still isn’t enough in my mind, but it’s better). I also think he’s grown about an inch in the last little while.
Until next week…
Keep praying!
Love,
The Jewkes
