Anyway, the swelling hadn’t gone down by Saturday so I debated on whether to take him to the doctor or not. They finally told me that the swelling would go down whether or not anything was broken and that the only way to know if something was really wrong was if Samuel let me know his ankle was hurting. Well, there is NO WAY for me to know if Samuel’s ankle is hurting and I didn’t want to chance overlooking any broken bones. So I took him to the doctor for x-rays. Unbelievably, he does have a small fracture in the outside bone in his leg near his ankle. The doctor assured me that at his age it doesn’t take much force to cause such a fracture and it could have been as simple as him getting his foot caught in the slats in his crib and then kicking his leg hard against it. Anyway, they splinted his leg and will cast it next Friday for 3 weeks. So now our little guy has a broken leg on top of everything else. He will DEFINITELY be wearing his dafo’s whenever he is in the stander from now on and we’ll get some mess siding to keep his legs in his crib!

Otherwise, things are about the same. We reduced his tranxene dose to 3/4 its normal amount and haven’t felt he is any worse so we will keep trying to go down. We also started him on the 5 HTP today along with some omega 3 fats. We may also try magnesium, vitamin B or a GABA supplement to see if anything can help to calm him down and help his moods. We just don’t know if there is something his body or brain needs that it isn’t getting in order to give him feelings of calmness. So we’ll keep trying what we can until we find something that works.

Samuel’s posturing is about the same. The botox does seem to have helped his legs and his left arm - though not as much as I had hoped. We will really be stretching them everyday, though, to try and get as much benefit from it as we can. He is also continuing to try and eat. I know he can do it and his favorite thing is to have a little cold water sponged into his mouth which he will most always swallow. But the real problem is getting him calm enough to even try and be able to feed him. When he is calm, he does it. But when he’s upset, it is so hard for him. So that is our main goal right now is to try and help calm him some.

We are also a little concerned with his weight though the doctors don’t seem worried. He only weighs about 22.5 pounds. He weighed 24 pounds at his 18 month appointment nearly a year ago. He is definitely a skinny little guy. We’re hoping the omega 3 fats might help him a little with that. We’ll see.

One good thing is that Samuel is sleeping very well. He sleeps from about 10 pm until about 4:30 am when he will wake up and quietly wiggle in his crib for a while and then fall back to sleep until about 7:30 am.

Well, that’s all for now. Keep praying that our little guy to be happy and comfortable!

Love,
The Jewkes

Samuel took about 10 days before he finally started sleeping well again. I had to give back some of the medications he was taking to sleep at night to get him back on schedule. But I only had to give him half the doses he used to take and it worked. Now I’ve backed off on some of them again and he continues to sleep through the night fairly well.

He still is posturing more than he was about a month ago. I’m not quite sure why. We did refill his pump last week and we also had the doctor put some more botox into some of his muscles - his inner thighs, his back, and his left shoulder. He got a flu shot that day and had some blood drawn to check his thyroid, electrylites and a few other things. Poor Samuel had 15 pokes with a needle that afternoon. But he only cried for the pump refill. All the others he just grimaced about. The botox seems to be helping already as he is bending his left leg more than I have seen since the accident and his left shoulder seems to be looser.

Samuel is moving his head to the left more and more each day. That is a nice thing to see. He is still tracking us and can hear us and is trying to make different noises with his voice. We continue to try to feed him, but are being very cautious since we are unsure as to whether or not he is aspirating when he swallows. We are looking into a program called vita-stim that can stimulate a person to swallow until they get the hang of it. They don’t know if it is something that will work for Samuel, but we will at least have him evaluated to see.

We are also trying to wean Samuel off his tranxene. I’m afraid that is going to be a difficult process. It is addictive and it will be hard to tell if it is the injury to his brain that is causing his agitation or the reduction in the medication as we wean him off it. But it would be better for him to be off it if he can handle it. I am also looking into an herb called 5HTP that is supposed to help with sleep and anxiety. I’m hoping it can counteract the reduction in the tranxene and possibly help Samuel’s mood.

I guess that is the most difficult thing right now is Samuel is still not smiling or showing expressions of happiness. Things would be a lot more bearable if we could see that he enjoyed life at times. I don’t know if a 2 year old can be depressed, but I wonder. He did smile the other day at one of his therapists. But it was so unexpected and at a moment that I wouldn’t have thought he would smile that I am unsure whether or not it was intentional. I’m assuming it was though! It sure did my heart good and I’m sure the therapist thought I overreacted to it, but I hadn’t seen that smile for 2 1/2 months! I hope we start seeing it more often in the near future.

Please keep praying for Samuel. We would so love for him to just be comfortable and happy and able to at least enjoy some things in life.

Love,
The Jewkes