Archive for July, 2008

3-Year Anniversary

July 22, 2008 | Updates

Time is flying and so is the summer. Just wanted to let everyone know we survived the 3-year anniversary of Samuel’s accident without too much difficulty. We actually had another little party for him the day before his birthday (Wednesday). He got to open a few more presents and even had a little cheesecake (until our ~~stupid~~ pesty dog snagged the rest of what was on his plate while I wasn’t looking). But it was all good. My mom and step-dad were here and able to celebrate with us. And my mom even rigged up some nice inventions for his new stroller to ensure every hard spot he can reach is well padded. Thanks mom!

Samuel’s actual birthday (Thursday) was a pretty hectic day. I had to spend all day in town in meetings, so I wasn’t too happy about that. But, we did make sure to take him to the movies that afternoon. We watched Kung Fu Panda and we were the ONLY ones in the theatre. That turned out to be really nice since Samuel was noisy through part of the movie.

About Friday night, it hit me that the anniversary day was about here and I spent some time in Samuel’s room while he slept crying and rethinking the past 3 years. I guess I’ve decided that the hurt never really goes away and that it resides just below the surface in me. I’ve come to accept that things are the way they are, but that doesn’t mean they can’t get better. I still so miss my little boy and am so sad at all that we aren’t able to share together. But I am also so thankful for all that we have. I wondered that night if I could just choose one thing for him what it would be. I think I would choose for him to be able to communicate with us. I so often wonder what he is thinking or how he feels or if he knows how much we love him. I so wish he could talk to us and let us know what’s inside that cute little head of his. I hope that he will be able to tell us sometime in the near future. That would be so incredibly wonderful!

Saturday started off early with Samuel being invited to the birthday party of a little boy in his preschool class. I was so touched that this little boy would think to invite his friend, Samuel, to his party. It was a cute little party and the kids were very accepting of Samuel. Bummer thing was, he slept through most of it - stinker! But it still meant the world to me that his friend wanted him there.

The rest of the day, we spent at Bear Lake. It was the first day in a long time that I was able to just spend a lot of time with Tom and all 5 boys relaxing together and just enjoying each other. Samuel faired well all day and things went pretty smoothly. I was so tired by the time we got home, but it was a good tired. And I didn’t even think all day about the fact that it was the 3-year anniversary of his accident. I’ve decided I’ll try doing that next year - getting all my crying out the night before so I can just enjoy Samuel on that day and not wallow in my own misery :).

So, that’s about it. Summer school ends in a week and our trip to California for ABR is coming soon after. Throw in a few family reunions and the summer will be over. Makes me sad because I love summer. Makes me happy because they’ll turn the canal water off. Maybe if I could get them to run the water in the winter, I could have the best of both worlds in the summer! Doubt they’d go for that though :(. Ah, well, I really think about it way too much…

Hope you’re all doing well. Keep those prayers coming!

Love,

The Jewkes

Posted by admin @ 10:44 pm | 5 Comments

A loose tooth, a birthday and my little muscle man…

July 14, 2008 | Updates

Well, life’s been crazy as usual. Actually, I love summer. It’s busy, but it’s also warm. And I LOVE the warmth!

I spent a week at girl’s camp, which was a lot of fun. I don’t get to spend much time with girls (seeing as how I have five boys and my husband at my house), so it was a fun getaway. My grandma watched Nathan and my sister watched Samuel, so all was well while I was gone. When I got back, I made a trip to Salt Lake with Samuel and we had his pump reduced again. He is now at 80 micrograms per day. I must say, I’m getting excited to be at the end of baclofen, but at the same time, I am having second thoughts. The lower we go on the dose, the more “off the wall wiggly” Samuel can be. I want him to be able to move if he wants to, but I also want to be able to hold him, carry him, transfer him from place to place and even bathe him. I also want him to be comfortable and to be able to enjoy things without always being completely arched backwards and so wiggly he can’t even think. So, I’ve got a lot of thinking to do about it all. I’m hoping that ABR will help with all that and I will also approach his doctor to see if there is something we can give him to just help calm him throughout the day. I don’t want him sedated, but he has unending energy that just makes his arms and legs flail around constantly. Maybe there is something that will help him feel calmer, but still allow him to move when he wants to. We’ll just have to see.

We also were able to celebrate the 4th of July. We all went the fireworks at the local stadium together. Samuel was pretty wiggly, but it was a good chance to try out his new stroller. We actually got it the day of the fireworks and now, just 10 days later, I am in love with it. It is still heavy (40 lbs), but it does fold up. It is NOTHING compared to the bulkiness and weight of his wheelchair, which was killing me to lift in and out of the Suburban. And, it is a lot more comfortable for him. Honestly, I don’t know why they buy little guys wheelchairs. This stroller will fit him until he’s probably 10 or 12 years old and 90 lbs. I am THRILLED with it. And, the fireworks went well. Last time we went (2 years ago, I think), Samuel couldn’t watch the fireworks because each time one made a noise, he would shut his eyes tight. This time, he just sat and watched the whole thing. That says something, I guess, about how much he has improved and can understand and accept the sounds and bright lights around him and deal with it all.

A few days later, Samuel woke up with a loose tooth! I was so surprised. It was really loose, so after school, I just pulled it out. I didn’t want him swallowing it. Here’s a cute picture of his missing tooth…

This past weekend, we were able to celebrate Samuel’s birthday with his great-grandma, his nana & papa, aunt & uncle and brothers (except for Tanner who was at Scout camp). It was nice, but Samuel was in a pretty bad mood most of the day, which was a huge bummer. We got a few cute pictures of him, though, in the few small moments when he was tolerating it all. Nathan had a good time, though. He got to help open Samuel’s presents and blow out the candle on his cake. I’m pretty sure Nathan thought it was his birthday all over again. Oh, well. I guess there are a few benefits to having a brother who can’t do everything himself :(.

One point of good news, though. Samuel FINALLY weighs 35 lbs. I can hardly believe it. AND, I think it may have something to do with ABR. It was looking back through some posts of mine the other day (which I actually do quite often if I can’t remember something) and I saw a picture of Samuel’s chest from last December. I couldn’t believe how emaciated he looked. I took a new pictures tonight so I could post them together. Since we have been doing ABR, many people have commented how he seems to be filling out in his upper chest and shoulder areas. Well, here are the pictures to prove it! And, I think the ABR may be adding some muscle to him and helping with the weight gain. WOW! I hope so. I am so excited to see it help him in so many ways! The first picture below is of last December. The second pictures is now (7 months later).

Pretty incredible, huh?! He looks like my little muscle man now and I am THRILLED! So, good things happening. Let’s hope they continue. His eye appointment this last week showed better vision than last time and a normal exam so that was good also.

Hope you’re all having a great summer. Our weather here is wonderful - not too hot, not too cold. Thanks for all your prayers. Keep them coming.