Archive for June, 2008

A Busy Month Continued…

June 29, 2008 | Updates

This past Thursday, we went to the rodeo. It was fun, but Samuel got bit by a mosquito right underneath his eye. I killed the mosquito, but it was too late as it had already drawn blood. I’ve had a bite like that by my eye before and it swelled up terribly. I was pretty sure the same thing would happen to Samuel. While at the rodeo, we saw a little boy named Colby who I met a few months ago. He had Ecoli poisoning, but the hospital thought it was appendicitis. During surgery to remove his appendix, he had a stroke which caused brain damage. His mom had contacted me about 9 months after this ordeal to find out about hyperbarics and I had gone to see him. Since then, he’s completed 40 treatments with amazing results. His tone is SO MUCH better. He is more relaxed. He is holding up his head. His vision is improved. And he has regained pretty good control of his arms. But best of all, he is smiling again and saying a few words. INCREDIBLE!

The rodeo also brought the chance to see Smokey Bear, which was a little sad for me. Samuel went to the rodeo before his accident and saw Smokey Bear there. He was immediately enthralled with him and from then on, one of his favorite things to talk about was “Mokey Bear”. Seeing Smokey again brought back a flood of memories of a happy, healthy little boy. And that was hard. But at the same time, being able to bring Samuel to the rodeo again showed just how much he has improved since his accident.

The real treat of the rodeo was when Ben signed up for Mutton Bustin’. He’s never ridden a sheep before, but has wanted to for a long time. He was so excited to sign up. Tom told him to wrap his arms around the sheep’s neck and his legs around its belly. I told him to hold on no matter what - even if he started slidding off the side or ended up underneath the sheep. (I did tell him the one time you are supposed to let go is if your head is headed towards the fence!) Well, Ben had a great ride - 15 seconds before he fell off. And, guess what? He won! He got a trophy as big as he was. It was great!

Then yesterday, we ventured down to a reunion that we have never attended before. Samuel, Nathan and I rode to Salt Lake with Tom’s parents to attend the reunion. It was a little sad to take Samuel on that day since his eye did swell up terribly as well as part of his face from the mosqito bite. But we went anyway. (There’s a picture of Samuel’s poor little eye below.) We went mostly because a sweet lady in our family invited us to come. She wanted to meet us so badly and had been following Samuel’s site for 3 years now. She also invited us to tell the others at the reunion about Samuel’s story. So, we went. And I’m glad we did. We were treated like royalty there, they were so good to us. And everyone was so interested in Samuel and all he has been through. It amazes me even after 3 years and so much talking about it how hard it is for me to tell the story. But it was a good thing and we had a nice time. Plus, I learned some really cool stuff like Samuel’s great-great-great-great grandfather’s name was Samuel Jewkes. And he was one of the first settlers near Orangeville clear back in the 1800’s. He built a cabin that is now in Heritage Park in Salt Lake. I told Samuel we need to go see it and when they say, “This is the cabin of Samuel Jewkes.” We can say, “Hey, Samuel, that’s your cabin!”

We also heard an awesome story about the grandson of the first Samuel Jewkes, named Alma Jewkes. When Alma Jewkes was 2-years-old, he was on a long trek with his parents near Salina when he suddenly fell out of the back of the wagon. His mother screamed and his father stopped the wagon. When his father got back to see what was going on, he discovered Alma underneath the wagon wheel with his arms and legs entangled in the spokes. His body was lifeless and from all they could tell, he was dead. His father untangled him from the spokes and got him out from underneath the wheel and then he was given a Priesthood blessing. Instantly, he was healed! And this is the man for whom the reunion was organized. So, every decendent of his and that entire reunion wouldn’t even exist if he hadn’t been healed that day. Cool, huh? It made me envision how one day all the decendents of our little Samuel may sit around and talk about all that he went through and how if he hadn’t survived, they wouldn’t even be here. Now, that will be neat!

Well, Samuel starts summer school this week and I’m off to girl’s camp soon. I’m working on lots of things right now for Samuel like a new stroller, more hyperbaric treatments, a new therapy table, a vision appointment, a neurology appointment, a pump reduction and a new home therapy program. We’ve done over 115 hours of ABR now! We should have over 300 when we go for our next evaluation in August.

Until next time…

The Jewkes

A Busy Month…

June 22, 2008 | Updates

Lots to write about! I guess I shouldn’t wait so long to post. And, I have a few pictures this time. Because of the length of this post, I’m going to break it into two. The first one I’ll post today and the next one in a few days.

Nathan’s party was fun. He got some cute clothes, some toys for his sandbox and for the bathtub, a big truck, some golf clubs and a wagon. He was pretty excited about it all and absolutely loved the cake. Below are a few pictures of his party, his wagon and him blowing out the candles. It’s cute because when he blows, he blows up and you can see his hair flying! He has his life jacket on because he’d been outside playing right before we had the cake and we hadn’t taken it off yet. I know some of you think I’m crazy, but I don’t care. I think he’s ADORABLE in his lifejacket :)!

Samuel’s nutrition analysis went really well. They said his diet looks good and he was back up to 34 lbs which is 90% of where his weight should be for his height. He is still only in the 10th percentile on the charts for weight and height, but at least he is on the charts. I had a long talk with the resident there because she was really interested in why Samuel didn’t have the tone that normally comes with cerebral palsy. I told her all about hyperbarics and she seemed really interested. So, it was a good appointment.

Father’s Day was a bit crazy since I thought stake conference was at 1 pm, but found out at 9:15 am that it started at 10 am and was 20 minutes from our house. We made it there just as they were singing the opening song. But within 15 minutes, I could tell Samuel wasn’t going to be happy sitting in his chair. He also wouldn’t sit on my lap. I took him outside and quickly realized that he was in pain. I thought back to changing his diaper that morning and realized it hadn’t been wet. It has been a long time since I had to cathe him, but it was apparent I would need to. I drove home and tried to cathe him for nearly an hour. It simply wouldn’t work. And now he was screaming from the pain of a full bladder. I then had to take him back to the church to pick up the rest of my family. When we got home, I tried again. An hour later, out of desperation, I gave him enough medication to put him to sleep. By 3 pm, I had finally drained his bladder. It had been a rough day with a lot of tears on both his part and mine. I just don’t handle seeing him in pain well anymore. I guess I’ve just seen too much of it. The rest of the day was nice, though, and I think Tom had at least an OK Father’s Day.

Samuel’s NACD appointment was a few days later. I noticed that morning that he also wasn’t wet and was worried about it. On the way to Ogden, Samuel started crying and I knew it was his full bladder again. But this time, after about 15 minutes of crying, he calmed down. When we got to the appointment, I changed his diaper but it was only slightly wet. And he started getting upset again like his bladder was full again and starting to hurt. But not 5 minutes later, he soaked another diaper and all was well. Thank heavens!

The NACD appointment went well. They were very good to listen to all I had to say and come up with some good suggestions. They were also very good when I told them we would be taking a break for a while. They were very supportive and I was so grateful for that. It’s always scary to tell someone who you figure is engrained in what they know that you are going to try something different. Most times, they really fight your new idea. But sometimes, you get surprised and they not only understand your position, but are willing to support you in it. Thank you NACD for being supportive! It’s so important to us!

To Be Continued…

Springtime in June

June 8, 2008 | Updates

Well, we’re a week into June here and the weather feels like April.  I’ve been wearing sweaters everyday and turning the heater on at nights again.  Weird.  Well, not too much going on here.  Nathan did come down with the flu right after I posted last time.  And then Samuel got it and Weston got it.  So, it was a few days of cleaning up lots of throw up.  Fortunately for me, whenever any of them decided to actually throw up ON someone, they threw up on my sister instead of me :).  Good practice for her is what I figure!

Last weekend, Weston was ordained to the priesthood in our church.  My parents came from Las Vegas to participate, so we had a pretty relaxing weekend.  Then this past Tuesday, Nathan turned 2 years old!  I can’t believe it, honestly.  We haven’t celebrated his brithday yet, but will tomorrow.  We would’ve done it sooner, but his oldest brother was at scout camp all week and we didn’t want to celebrate without him.  I did take a few pictues of Nathan on his birthday, though.  I just can’t believe how much he has grown!

This week we have an NACD appointment and a dysphasia appointment.  The NACD appointment will be our last one for now.  I’ve decided we can’t afford both the NACD and ABR, so we are going to go with ABR for now and just work up our own educational therapy for Samuel at least for the next year or two.  I think NACD has done good things for us, but I also think we need to move on and see how beneficial ABR can be. 

The dysphasia clinic will be to evaluate Samuel’s diet, growth, weight gain, etc.  We had a goal of him weighing 35 lbs 6 months ago.  He was up to 34 lbs at one point, but these last two bouts of sickness have brought him back down to 32.5 lbs.  Bummer, really.  So, we’ll see what advice they hopefully have for us.  They have a good speech therapist there that I really wish he could see, but it would take us driving down there to see her and with gas prices the way they are, I’m not sure that’s feasible.  I’ve been trying to get into see a speech therapist at the college here without much luck.  I’m probably just going to have to start being really pesty about it.

So, that’s about it.  Samuel has been off the wall wiggly for the past 2 days.  I honestly don’t know how the kid can go and go and go like he does.  I guess that explains the difficulty getting him to gain weight.  We have heard him laugh a few times lately.  I found a spot where he is really ticklish between his shoulder blades and I can sometimes get him to laugh.  My sister said she caught him laughing really hard the other day at the show he was watching.  And I had a cute experience with him yesterday.  He was laying on the floor staring intently at something in his closet.  I picked up the toy I thought he was looking at and asked him if he wanted it.  He smiled, so I put it by him.  Two seconds later, he pushed that little car toy across the floor.  I was surprised and made a big fuss that he had done that so well.  I put it back by him and asked him to do it again and he did it several times in a row and very purposefully.  It’s just a swipe of his arm, mind you, and no type of hand control, but it was fun to see him interacting with his surrounding for a moment.  Hopefully, it’s a result of the ABR and he’s gaining more control of his arms.  We are up to nearly 80 hours now.  A far cry from the 10,000 hours I’d like to see over the next 3 years, but we will get there!

Well, that’s about it.  I hope everyone is doing well.

Love,

The Jewkes