Archive for September, 2005
September 25, 2005
September 25, 2005 | Updates
Samuel is doing pretty good today. He hasn’t been as good a sleeper the last few nights. I’m hoping that changes over time. His feedings seem to be going fine. He did spit up quite a bit twice today. But it seems to be relieved by sitting him up during his feedings.The good news, Samuel has been urinating on his own much more often. I usually only have to cath his once or twice a day now. He is also getting more and more and more aware. When I massage his arms or legs or even stretch them he will calm right down and seems to really enjoy it. He also calms in the bath tub and whenever you move him or pick him up. And his eyes are so very alert. Today I swung him back and forth in my arms and his eyes stayed focused on one thing the whole time. So as his body swung back and forth his eyes did too keeping focus on the one thing he was looking at. It was really neat.
Samuel did have lots of visitors this weekend. My dad, step-mom and sister came to visit and were good enough to watch Samuel while Tom and I went on a date on Friday night. They also watched Samuel while we all went to church this morning. It was very nice to get out. We also had his uncle and a few of his cousins and his grandpa grandma Jewkes visit on Saturday. And now his grandma Bird is here for a few days to help us out. She’s been a life saver even though she just finished chemo and radiation for cancer just a few weeks ago. So many of the people we know are amazing and we don’t know what we’d do without them.
Last of all, I’ve been trying to teach Samuel important tasks :-). Like sticking out his tongue at me or closing his eyes when I ask. We will have to see if he figures it out and can do it on cue. But time will tell.
The up to 3 program did come last week and I’m pretty excited to work with them. We also have an appointment down in Salt Lake on Wednesday to get Samuel’s pump refilled and see his rehab doctor there. That should be a pretty tiring day. We’ll let you know if anything important comes up. Otherwise, I’ll just write next Sunday.
Thanks again everyone. Keep praying. In fact, pray harder! 
Keep up the faith. We can see improvements and we’re so excited about them.
Love,
Teresa, Tom, Samuel & Boys
September 23, 2005
September 23, 2005 | Updates
Well, last night was the best night Samuel has probably ever had. Samuel fell asleep at 10 pm and didn’t wake up until 6:30 am. He did have to have ambien, tranxene and clonadine during the night. But he didn’t wake up during any of them. We will probably keep giving them during the night even if he doesn’t wake up for a while just to get him on a good schedule. Then we’ll try weaning him off some of the doses.Samuel is getting therapy at least 3 times a week and the up to 3 program hasn’t come to visit him yet. So I’m sure they will also come once a week or so.
Our night nurses are helping out greatly and making it so I am awake enough to do things with him during the day. He is definitely responsive to being moved or rubbed or picked up. He calms for thirty seconds or a few minutes when we do something he likes - like rub his hands or his feet or carry him around. He is also tracking things better and better each day. We are also working on getting him to eat on his own and I think he actually swallowed a bite of applesauce today. That’s at least a start.
Things are going to be slow and changes won’t happen everyday, so I’m thinking that I will probably start updating once a week instead of everyday. I will try to make that day Sunday since things should be slower then. So watch for the updates each Sunday and I’ll let you all know how things are going. If anything drastic happens on a different day, I’ll be sure to post earlier.
Thanks again to everyone. We are so blessed to have so much help and support. Some days are harder than others. But we’ve decided that we just have to accept that things will happen as they are supposed to and we need to be OK with that. Keep praying that Samuel will get well. He is young and VERY determined and we still believe great things will happen with him. But it is not going to be an overnight thing. It’s going to be long and hard and we’ll need your prayers through it all. Keep faith that God’s will is being done and that he keeps his promises and will bless Samuel through this.
Thanks!
Love,
Teresa, Tom, Samuel & Boys
September 21, 2005
September 21, 2005 | Updates
I have decided that posting these updates may have to happen during the day instead of at nights. We’ll have to see. They may be random since I never know when I will have a few moments.Samuel is still doing well. We took him to see his regular pediatrician in Logan yesterday. Our doctor at Primary Childrens thought it would be a good idea for our regular doctor to see Samuel and have a good idea of what he is normally like. It was a hard ride to and from the visit, though, as Samuel tried and tried to posture in his car seat.
Everything else seems to be going fine. We are just working on getting all of his therapists familiar with him and here often to work with him. He is still very alert most of the day and we don’t let him take any naps during the day or he doesn’t sleep at night. The nurses coming at night have really helped and I am actually getting some sleep now too.
Otherwise, we are just trying to figure out what all we should be doing for Samuel to help him recover. It’s hard to know what therapies he should have and whether he is getting enough of them or not. It’s hard to trust that the insurance company will be sure to order the best things for him. They don’t always seem to have his best interests in mind. And I hate taking time away from him to do all the paperwork, but it needs to be done.
Thanks again, everyone. Please keep praying. He has a long, long way to go still.
Love,
Teresa, Tom, Samuel & Boys
September 20, 2005
September 20, 2005 | Updates
Sorry for the missed updates the last 2 nights. My internet has been working only when it feels like it and I haven’t been able to find time to post when the internet is actually up.Anyway, things are still going well. We’ve decided that Samuel seems to do better sitting up when he is getting his feeds. So we try to accomplish that as much as possible. It’s a little hard because each of his feeds take 2 hours to give. But we do the best we can.
We’ve had volunteer nurses the last 2 nights which has been very nice. They stay for 8 hours and administer Samuel’s nighttime meds and other things. He has been sleeping pretty well for them from about 10 pm until about 6 am usually with only 1 waking period for a 1/2 hour or so. He does receive medications almost every 3 hours to keep him sleeping. But at least they are working. I have also moved him to taking a nap in the morning. After his morning nap, I don’t allow him to fall asleep again until bedtime. This has helped greatly with him sleeping at night.
Physical therapy is coming twice a week and speech and occupational therapy should be coming at least once a week. Samuel also qualifies for the up to 3 program at USU, so we should see therapists from there a few times a week also. Today, we have an appointment with his regular pediatrician so he can get a good feel for what Samuel is like and be better able to diagnose changes or problems in the future.
We also have signed up with the National Association for Child Development in Ogden to have them develop a daily home program for us to do with Samuel to stimulate him and help reroute the lost functions in his brain. We are excited for an appointment there, but will probably have to wait about 3 weeks to get in.
That’s about it for now. Samuel does seem happier at home. He is never upset or agitated unless he has a stomach ache or some other physical upset. His brothers are good to talk to him and play with him as is his dad and grandma. He’s getting a lot of good company.
Thanks to everyone for all you’ve done. Especially right now, it is so helpful to have these nurses coming and to have meals coming in. My grandma is here taking care of wash and dishes and so many other household chores. And there are several people helping cart the kids all the places they need to get to. The service we’re receiving is a life saver.
Thanks again,
Teresa, Tom, Samuel & Boys
September 17, 2005
September 17, 2005 | Updates
Today was a nice slow Saturday - at least for me and Samuel. The boys and Tom got a lot of house work and yard work done. And Samuel and I enjoyed the day mostly indoors. Samuel was a bit more agitated today than he has been the last week or so. Tom and I had talked about seeing if we could reduce Samuel’s keppra slowly and see if it makes him more aware of things. We had discussed this with the doctors before leaving Primay Children’s and they had told us how to go about doing so. So this morning I gave Samuel 3/4 his regular dose of keppra. And like I said, Samuel was much more agitated all day long. I went back to his regular dose tonight and maybe we will try again in a few days.Samuel did spend some time today outside in his wheelchair and inside on the floor watching his brothers play. He has also taken time the last few days to see the horses and the dogs. He seems to be really interested in the horses, and not too excited about the dog, Chief, getting too close to him. I’ve also taken some time to let him taste some milk and applesauce in very small amounts just to continue trying to get him used to having things in his mouth.
He didn’t sleep well again last night, so I kept him up most of the day again. He was asleep tonight by 9 pm, so we will hope for a better night.
Overall, it’s wonderful being home. It’s so nice to see the boys and Tom. And it’s much better to see Samuel in his own room instead of in a hospital room. I think having his dad and brothers around is very good for him. And just simple things, like getting a glass of milk from the fridge, are wonderful for me. It’s so nice to not be eating hospital food anymore!
We still feel so strongly that Samuel is going to make a lot of improvements. But we also feel it is going to take a lot of time and hard work. I am looking into additional therapies that we can initiate on our own in addition to the therapies our insurance will help pay for. We just want to do all we can for him and feel that he needs a lot of stimulation in order for him to get well. But we don’t feel qualified to know what kind of stimulation is the best for him. So we are working on finding out.
Once again, thank you to EVERYONE! If I tried to list all those that have helped us, the list would be astounding and I would most certainly miss someone. Our motto lately, “The only thing worse than Samuel’s accident would be if something good didn’t come from it.” You are all ensuring that good things are coming from this trial. Thank you so much. You are teaching us by your examples. And we pray that you will each be richly blessed for all you have done for us.
We love you!
Love,
Teresa, Tom, Samuel & Boys
