September 17, 2006
September 17, 2006 | Updates
Back again! You’re probably all sick of hearing from me. But keeping this care page has been one of the best things ever. If nothing else, it’s a great journal for us to look back on!
This week was full of ups and downs. But I’m feeling better than last week and hope I didn’t depress anyone too much :)! On Monday night, we went to the carnival at the school Ben, Wes & Samuel attend. Samuel started falling asleep about the time we got there. But we hurried and put him on the little “four wheeler train” and let him ride with Wesley. He seemed to enjoy it and it was fun to watch him ride with the other kids. Not too long afterwards, Samuel spit up a little, gagged and then threw up. That’s been happening a lot lately, though, so I was prepared for it when I saw that “look” on his face and we just ended up with a few dirty burp cloths and not an all out disaster.
My sister stayed with us for a while and then had to leave, so that left me with all 5 kids. I wasn’t too concerned about that until Tanner asked if he could go get some cotton candy and disappeared for about 1/2 an hour. Ben and Wesley were in line for rides. I’d chosen to carry Nathan instead of bring the stroller and Samuel was upset in his car seat. I was getting a little frustrated trying to figure out where to put Nathan so I could pick up Samuel when Tanner finally came back. Apparently, the line was long - really long, I guess! Anyway, I’ll be glad when we finally get our double stroller that we ordered clear back in June so I won’t have that issue again.
We stayed at the carnival for quite a while and just before leaving, I got the urge to take Samuel on another ride. I just wanted him to enjoy his carnival, too. So I asked the girl at the huge blow up slide if we could try and take Samuel down it. She said “sure” and she would get all the other kids off first. So Tanner and I hauled Samuel up to the top - and I mean HAULED! I think I would have had a hard time just pulling myself up that thing. But Tanner and I had to do it one-handed with 27 lbs of Mr. Samuel in our other arms. We almost didn’t make it! Once at the top, I pretty much changed my mind! I was mostly worried that I wouldn’t be able to keep Samuel safe on the way down and that I break his arm or leg or something. So I sent Tanner down first to watch if I should expect a crash at the bottom or something. Then I took a big breath and down we went! Lucky I’d taken that big breath because I think I screamed all the way down. But Samuel just smiled huge all the way down and for about 5 minutes afterwards. He loved it!
Our last horseback riding session was Tuesday. Pretty much the same story as before except this time, they let us trot on the horse. Samuel instantly smiled and then started to giggle. He thought it was great.
School was good all week. Samuel stayed awake most days and if he did sleep, it was just for a little while. He has also been calm at school with less crying. And they have him working with switches and say he is doing a good job. We did miss Thursday because I had a head cold and his teacher was out of town so I decided we’d just skip that day.
Our pump appointment went OK. Samuel threw up on the way to Salt Lake. And it was strange because he was being fed at the time he threw up, but he didn’t throw up Pediasure, he threw up yellow stomach fluids. I had to keep stopping the car because he was throwing up or crying. So we ended up being an hour late for our appointment. And then I had forgotten to numb the injection site, so I made them wait another 20 minutes for the numbing cream to work before they filled the pump. Thank goodness I did because it took the nurse 2 tries and a lot of digging with that needle to find the pump port. And Samuel was screaming even with the cream.
We reduced Samuel’s dosage again so we are now at 775 micrograms per day. And we made another appointment in a few weeks to reduce it again. The doctor was out of town, so I didn’t get my questions answered. So I made sure she will be at the next appointment. Then the drive back was bad because by that time, it was rush hour traffic and both kids were screaming by the time we actually made it home. I gave Samuel ambien that night to get him to sleep because he was so worked up. Not the greatest day.So the past few days, Samuel has been really active and a little more upset than usual. But this always happens when we reduce his pump and it usually lasts a week or so. It gets to me after a while, because I hate it when he’s not happy. But it should go away soon. His myoclonus has been a bit better this week. And he did gag twice today without throwing up which is an absolute miracle! My next project is to get him off Pediasure. I’m trying to work out something with information I’ve gotten from other parents of near drowns and nutritionists. Samuel just isn’t doing well on the Pediasure and I hate it anyway. So wish us luck on that front.
Otherwise, all is good. A little side note here. When we getting Samuel’s pump refilled, we had to wait in the hall outside the room for a few minutes because another patient was still in there. The door to the room was open and I could see the mom. I knew her, but I couldn’t figure out why. It took me a few minutes to realize I’d seen her on the news and she was the mother of the conjoined Herrin twins who had been separated recently at Primary Children’s. (www.herrintwins.com) So I peak farther into the room and there the twins were – each in the own little wagon. It was pretty neat to actually meet them after seeing their story on TV several times. They looked like they were doing well and it sounded like they were headed home soon after about 100 days at the hospital. WOW! The miracles of modern science.
Until next week…Keep up those prayers!
Love,
The Jewkes
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