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.
Love,
The Jewkes
RSS feed for comments on this post.
TrackBack URI
July 15th, 2008 at 6:07 am, Caradie & Corbin Says:
The #2 pic is incredible. His ribs aren’t flared out, his arms are more defined but boy does he look grumpy LOL
Happy Birthday Sweet boy!!!!
Caradie & Corbin
July 15th, 2008 at 2:32 pm, Sharon Jewkes Says:
Cute, cute photos and happy birthday, Samuel. He is really growing up if he is losing teeth. What a remarkable improvement showing in the last two photos. We so hope and pray that the ABR is helping him so much. That is great. Love to all of you. Sharon and Creig
July 17th, 2008 at 5:20 pm, Joyce Weister Says:
HELLO PRECIOUS FAMILY, YOU ARE IN MY THOUGHTS AND PRAYERS. HAPPY BIRTHDAY SAMUEL! IT SOUNDS LIKE YOU HAD A GREAT BIRTHDAY. XOXO-I LOVE YOUY LITTLE GUY! BELATED HAPPY BIRTHDAY TO NATHAN. HE SURE IS A CUTIE LIKE HIS BROTHER SAMUEL. I LOVE THE PICTURES. HE LOOKS SO CUTE WITH HIS TOOTH MISSING. HE LOOKS WONDERFUL IN THE OTHER PICTURE LIKE A LITTLE MUSCLE MAN. HE HAS COME A LONG WAY. IT SOUNDS LIKE YOU ARE HAVING A HAPPY BUSY SUMMER. I AM GLAD YOU GOT AWAY WITH THE GIRLS. I AM SURE THAT MUST HAVE HELPED. I WILL KEEP PRAYING FOR LITTLE SAMUELS COMPLETE HEALING/MIRACLE. I WILL BE PRAYING GOD WILL HELP YOU THINK AND MAKE THE RIGHT DECISIONS WITH HELP FROM ABR. I HOPE THE DR. CAN GIVE SAMUEL SOMETHING TO HELP HIM BE CALMER SO HE ENJOYS THINGS. GIVE THE KIDS A BIG HUG FOR ME. GOD BLESS YOUR FAMILY. GOD LOVES YOU AND I LOVE YOU. JOYCE
July 19th, 2008 at 11:46 pm, Liz and Ashleigh Says:
Wow what a transformation. The ABR people should be thrilled with that. The wonderful diet you feed Samuel has really kept him in wonderful shape considering he is always moving and burning up calories.I hope the tooth fairy was good to you Samuel.
Happy Birthday
October 29th, 2008 at 3:53 pm, Susan Jeff Says:
Samuel looks great! What a lucky little boy to have such a great Mom!