Archive for March, 2008

Knocked on our butts!

March 28, 2008 | Updates

Quick update here to let you know we’re still alive. Ben got the flu 2 weeks ago. He got sick on Thursday and had to come home from school, missed Friday, recooperated all weekend and then missed the bus home from school on Monday because he was in the bathroom throwing up. Who has the flu for 5 days? Apparently we do! Tom got it that same Monday and was sick for nearly 7 days. I got it this past Tuesday and I’m still flat in bed. Weston woke up with it in the middle of last night. Well, that’s 4 down and 3 to go. Not a good thing, though, because I certainly don’t want to experience this with Nathan OR Samuel - especially Samuel. A week of no eating could really do his skinny little body harm. We’re all doing our best to stay far away from him. But the sad thing is that he and Nathan are already suffering from head colds. Samuel has been unhappy for most of the week and sounds stuffed up. I guess there’s a chance he already has what we have, but I doubt it. It doesn’t take much to get him to throw up. Worst of all, Kaylee came down with it yesterday. So, I’m sure we won’t be seeing her for several days. You should see my house! On second thought, no you shouldn’t. I would be completely embarrassed. It’s amazing what a mess a 2-year-old can make when you aren’t up to following him around and cleaning up after him or quick enough to pull everything he grabs out of his hands! (Can you say cereal spilled all over the floor, DVD’s scattered around the house, cracker crumbs everywhere, shoes everywhere (since he loves trying on everyone elses shoes), drawers open all over the place, toys galore, cushions off all the couches? Well, at least he’s having a good time!)

So, that’s the short of it. I haven’t been this sick in years and I don’t think I’ve EVER had the flu last for more than 48 hours. Watch out if you haven’t had this wonderful bug. It will knock you flat on your butt for a week! Here’s to praying we all get better soon…

Love,

The Jewkes

Posted by admin @ 2:52 pm | 1 Comment

A Month!

March 8, 2008 | Updates

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A month! It’s been a month since I posted! I don’t think I’ve ever gone that long without a post since Samuel accident nearly 3 years ago. I’ve thought about posting. But I really hate posting when there’s nothing fun to say. And the last month has been a little hard on Samuel.

We started the switch over from the Neurontin to the Keppra after I contacted the neurologist to make sure I knew how to do it. It took about 3 weeks to make the entire switch. And guess what I remembered that I had so quickly forgotten. Keppra makes Samuel irritable - really irritable. I did some reading online and it said that it is a common side effect in children and that it normally takes 2 weeks for it to disappear. It took at least that long for Samuel to get over it. So, needless to say, it was 2 weeks of rough days everyday. And when Samuel’s unhappy, mom is unhappy and when mom’s unhappy, everyone is :)! In addition, we saw a lot of larger seizures during the switch over and on the worste day, Samuel had 3 of them. They are not fun for anyone, and we are glad they now seem to be under control again.

About the time Samuel got over the seizure med switch over, we headed to Salt Lake to have his pump reduced again. This time, they had to refill his pump and change the concentration of the medication in it. It was NOT a fun appointment. There were a few questions that came up as they were changing the dosage and concentration, so the appointment ended up being 2 hours long. And I am not kidding you that Samuel knows where we are as soon as we enter a doctor’s office. When we went for his follow-up appointment to have his ears checked, he was mad the second we got there. But his ears looked good (as did Nathan’s) and some of the wax had cleared itself out, so we didn’t end up having to flush them (thank heavens)!

The Salt Lake appointment was no different. Samuel was mad pretty quickly and refused to settle down. And once we held onto him to hold him down while they put the needle in his abdomen to refill the pump, he freaked out. He screamed and screamed and, of course, they couldn’t find the port with the needle and it took several pokes to get it done. It’s always hard to watch him cry and especially when he starts sobbing. I always know he’s at his breaking point when he starts to sob. It just lets me know that he feels so helpless to do anything about the situation he’s in and that he wants so badly to get out of. And it’s not fun being the mom who has to make him endure it anyway - no matter how unfair it seems to be.

When it was all over, he got to pick a prize and he chose a big white and purple bunny. He seemed happy to have it and even happier that we were leaving :)! From the second we left the hospital, he was happy and content the rest of the day. On a side note, I found this great website with shirts for kids like Samuel. You really should check it out www.tynietoes.com. My favorite one is the shirt that says, “I may only have half a brain, but I’m still smarter than you!” After our Salt Lake appointment, I wanted to get him one that said, “They tortured me for two hours and all I got was this silly bunny!” Not to be ungrateful for the bunny. I LOVE that Primary Children’s is always so willing and ready to give great gift to the kids that they treat. It is one of the best things they do in my mind. But sometimes, no matter what you give the child, it just seems so insignificant compared to what they just endured. I’m sure you get what I mean.

So, the pump reduction was Monday and it was just yesterday (Friday) that Samuel started to seem more of himself again. He had been MAD as I’ll get out for the 4 days prior. Pump reductions really put him through withdrawals and they manifest themselves in him kicking harder, crying easier and just plain being more agitated. I tried to change his diaper one of those days and the instant I touched him, he let me know he didn’t want me anywhere near him by kicking and crying and basically making that simple choir completely impossible. Thank goodness he’s nearly back to his happy self. And thankfully, there should only be a few more reductions before he is off the baclofen completely. I can hardly wait.

Well, I’ll leave you with a cute little story. Our church held its annual Blue and Gold Banquet for the Scouts in the ward. If any of you have been to ward parties, you know that if they involve food, they are usually held in the gym. And the end of the party almost always entails a bunch of kids running around, chasing each other and screaming at one end of the gym while the parents sit at the other end visiting. Well, this party was no different. And Samuel was NOT enjoying sitting with the parents as they visited. So, I turned to his 11 year old brother, Weston, and asked Weston if he would please take Samuel down to the end of the gym and push him around in his wheelchair so he could feel like he was running around with all the other kids. Weston, being the GREAT brother that he is, didn’t even batt an eyelash and off he went with Samuel to join the fun. And what fun it was!

I don’t know who enjoyed it more - Samuel or the kids he was chasing (or me)! But Samuel was “it” and he would chase the kids around (by Weston pushing his wheelchair). The kids would scream and holler and run when they saw him coming with huge smiles on their faces and Sameul would grin right back. I bet they played the game together for 30 minutes or more. And honestly, it warmed my heart like you can never imagine. For a brief moment, my little boy was as close to being “normal” as he could possibly be. And no one was staring at him or wondering what was wrong with him or feeling sorry for him. They were just playing with him, enjoying him and letting him be just one of the kids. There is no way to express to those kids that allowed him to participate just what they were doing. And I doubt any of them realize it. But I am so grateful to them and to all the members of our ward and many others in Samuel’s life who are so willing to look past his disability and see that inside he is just another little boy. THANK YOU! for accepting him and treating him like he belongs. When I hear others speak of Christ-like-love, I think of moments like this one and feel I have a sense of what true and unconditional love really is.

Keep praying for our litte guy. We are so blessed to have him in our lives. And although progress is slow - so painstakingly slow - we still believe and know that one day, through God’s plan, he will walk and talk and be well and whole again. Whether that moment is tomorrow or 100 years from now or sometime in the next life is not of our concern. What does matter is that we realize how blessed we are now and that we continue to believe. And we do!