December 28, 2006
December 28, 2006 | Updates
We hope everyone had a very Merry Christmas! We had a nice one. We went to several parties where Samuel was able to sit on Santa’s lap and spend time with family and friends. He mostly just smiled at Santa and enjoyed all the attention. He did get his hand in Santa’s beard once and didn’t like the feel of that so we had to pull him off Santa’s lap.Samuel wasn’t in a very good mood on Christmas Eve. We went caroling at the nursing home and I think the combination of being there and of Samuel being agitated upset me a bit. I won’t deny that it is hard having little flashes of how Samuel should be pop into my head. This year would be a year of him being excited for Santa and anticipating getting all the things he had asked for. He would be enthralled with the lights and the tree and the decorations and chatting with his brothers in all the excitement. It just got to me on Christmas Eve. I want so badly for him to walk and talk and play like all the other children. And I truly believe that is coming someday. It’s just hard to be patient.
At the same time, I do so well on days when Samuel is happy and smiling. Those days are easy and he is the greatest joy in our lives. And we are so blessed that he is so aware and so interactive with us. We certainly can’t complain!
Christmas turned out to be much better. When I went to get Samuel out of bed, he was sound, sound asleep. So we opened gifts without him. I debated doing that because I felt bad, but he was so very asleep and I knew that he would enjoy opening his own presents more if things weren’t quite so crazy. So when he woke up at about 10 am, we had another little Christmas just for him. It was cute because after we opened the first present, he sat and stared at all the others under the tree like he was thinking, “Hey, this had something neat in it. Can we open all those?!” And we did :)!
Samuel got a big love sack to lounge on, a portable DVD player, lot of new movies, a pack man game with the old large size controllers, a new coat, hat & gloves, clothes and lots of other little gifts. It turned out to be a fun morning. And we spent the rest of the day lounging and enjoying each other’s company. We then spent the next day sledding. We bundled Samuel all up just like Ralphy’s brother on the Christmas Story and then he and I slid down the sledding hill a bunch of times and he even got to ride on a snowmobile with daddy. He seemed to like the sledding, but not he cold. He’s my kind of kid!
So, we’ve sort of continued the trend for the last week, lounging and playing and spending lots of time with family and friends and Samuel has been in a good mood despite his change in baclofen dose. I forgot to mention that as of our last posting, Samuel’s pump is now down to 550 micrograms a day. If I recall correctly, it was just this past June that his dose was 1100 micrograms a day. And we aren’t seeing any adverse side affects due to the decrease. Our hope is to someday remove his pump. Let’s hope we can get to that point.
The only other news I can think of is that Samuel has been doing better at eating. I fed him several bites of mashed potatoes on Christmas Eve and some chocolate on Christmas Day. He did much better than he’s done for a long time eating it. So we’ll keep plugging along on that in hopes to get him eating on his own soon.
Well, happy new year to everyone and I’ll try to get some cute Christmas pictures posted soon. Keep praying – especially for the eating and crawling. We’ll get there. It’s just going to take a lot of work and prayers!
Love,
The Jewkes
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