Archive for October, 2007
Stressing over the g-tube surgery…
October 28, 2007 | Updates
Just a quick update. We had Samuel’s pump refill about 10 days ago and reduced Samuel’s baclofen again. However, we haven’t been back because a few days later, he and Nathan picked up a cold. He’s now been battling that cold for a week. He seems to be handling it fine and still sleeps well, but he is congested and not very happy so I know he isn’t feeling well. Samuel had to miss nearly everyday of school last week because of the cold. He has a nasty sounding cough, so we will wait a few more days and if it isn’t gone, we’ll go in to see if he has an ear infection or a sore throat. Nathan has the same cold and he is still sick, so I’m thinking it’s just a cold that takes a while to get rid of. None of the rest of us have gotten it yet. Hopefully, we won’t.
Otherwise, not much to write. We have Samuel’s surgery for his g-tube scheduled for the 2nd week in November. It requires an overnight stay which are bad words at our house. After they told me that, I couldn’t sleep for 3 nights. Crazy how much I hate the hospital now. But I shouldn’t be complaining. I’m sure Samuel hates it more. But I am hoping that the g-tube will be a much better solution for him than the tube in his nose. It’s crazy how you start second guessing yourself just as soon as you’ve made up your mind. I guess any surgery is scary and that is probably the whole problem right there.
It’s UEA and Halloween this week, so we should be pretty busy. We haven’t gone to any more pump reductions because Samuel has been sick and he still seems to be struggling from the last one. Hopefully we can go again soon. But the goal is to get his pump reduced without increasing his tone. If that can’t be done, then the pump is helping him. So, we’ll just have to hold off and see how things go.
Oh, yea, we got our passports on Friday. Pretty quick, huh?
Thanks for all the prayers. Please pray that Samuel will get over his cold soon.
How NOT to take your passport picture…
October 11, 2007 | Updates
Well, not much to post this week. And, actually, I’m good with that! I guess sometimes no news is good news :)! Tom, Ben and Tanner did spend a few days on the muzzle-loader deer hunt and they had a good time. Apparently, they saw the biggest buck they have ever seen and Tom had a really clear shot at it, but his gun misfired. Bummer, huh?
Samuel had a strange week last week. We drove up to visit the boys one afternoon and Samuel slept for about 5 hours (the ENTIRE trip and visit). He also slept one morning until noon (clear through school and everything). And he threw up at school another day. I was getting concerned that it might have something to do with his baclofen pump since we had just refilled it and changed the dose and he had no other symptoms. But, just as I was about to drive him to Primary Children’s to be checked, he woke up sounding really croopy. So, in the end, it was just a cold. And it only lasted a few days total, so we can’t complain. It didn’t take him long to get back to his wiggly self.
We also spent a day up at the USU assistive technology lab and got a button switch for a power wheelchair we have on loan from them. It had a joystick controller before and that was just too hard for Samuel to use. But I think he’ll be able to figure out the button switch and that should be fun for him. We also tried out a walker and were able to make sure the one we have ordered for him will be the right size. It was a productive meeting.
Today, we made a quick trip to Salt Lake for a pump decrease and we applied for passports. There are therapies in Canada, India and China that I want to pursue and I can’t do that without passports. So, I figured it was best to just get them now. It was pretty easy applying except when they tried to take Samuel’s picture. They said they couldn’t take it with Samuel in his wheelchair because it had to be an entirely white background. I asked them what they do with adults in wheelchairs. They said that they are usually tall enough that their shoulders come up above the back of their chairs. (Apparently, they had never seen adults in wheelchairs who had severe brain injuries and require a headrest.) So, we tried sitting Samuel in the stool they had and just holding him there while they took the picture. But our hands couldn’t be in the picture, so we had to hold him down low and then he kept bumping his head on the wall. Aaaauuurrrrgggghhhh!
I think the lady felt pretty bad. So she went through the office and found a large white erase board and we layed it on the floor and layed him on it and took the picture that way. It was still pretty hard because she wanted his neck straight AND his eyes open AND his face directly facing her. (Yea, right, this is Mr. Wiggles here!) It took about 4 shots and a whole lot of me singing Signing Time in public (double aaaauuurrrrgggghhhh), but in the end I think she just decided that was as good as she was going to get. So, we have his passport picture, but I’d sure hate to see what they do to you if you’re handicapped and 6 feet tall :)! I sure am glad Samuel is still little.
Speaking of little - or not so little - Nathan is walking all over the house. It’s about time since he is 16 months old now. He is also signing a TON. It is adorable! He can sign eat, hot, more, goat, milk, dog, bath, bye-bye, book and all done. He picks up on them really quickly and is learning several new ones each week. He also attempts to say the word that goes with the sign when he is signing it. But it is so nice that he is signing because he usually only gets the first letter or two of the word out and without the sign, I would have no idea what he was saying. The other day he was whining and I had no idea what was wrong. Pretty soon, he started signing bath and I realized he could hear the bath water running and wanted to take a bath. I don’t think I ever would have figured that out without the sign! MAN, I should have done this with all my kids. Score one for Samuel for getting us all to learn to sign!
That’s about it. I’m waiting to hear back on the g-tube issue. The doctor is out of town until next week. We are also still working on getting the g-therapy from India. The doctor there was concerned about Samuel taking it as long as he is on intrathecal baclofen. So, we will work to get the dose down to zero and then we will try the therapy. We are at a dose of 192 micrograms a day as of today. We’ll go down again next week. It should take us about a month to finish going down UNLESS Samuel doesn’t tolerate it well and then we will go slower.
Hope everyone is doing well! We’re working hard on making some decisions as to what to do next for Samuel. We’ll let you know what we come up with soon! Keep praying!
P.S. Oh, yea, I forgot that I just spent the whole evening uploading video clips of Samuel since his accident. For those of you who haven’t been close enough to us to see Samuel in person, I suggest you take a few minutes and view the clips. Even for those of you who have seen Samuel, the clips from just after his accident are a stark reminder of how awful it was and how far he has come. You won’t be able to view them by date because when I uploaded them, they all came in as the same date. But you can view them by “album” (see the left side of the page when you are on the dropshots website) and they will pretty well be in order. The website address is http://www.dropshots.com/SamuelsMiracle. The really show what a miracle Samuel is. ENJOY!
P.P.S. Sorry, but someone asked me how to leave a comment on this site. If you look right below the end of this posting, there will be the word “Comments”. If you click on that, you can either leave a comment or view the comments that have already been left. All the comments are emailed to me to approve before they are actually posted on the site. So, I will for sure see your comment. Thanks to all those who have left comments already. We LOVE them!