Sunday came and went without any smiles, but not without a lack of trying. You know how people look as they try and get babies to smile? That’s nothing! You should see all of us try and get Samuel to smile :)! And then today, the smiles were back. One this morning when I put my glasses on Samuel’s face. He closed his eyes as I put them on him, and when he opened them, he grinned. He always did like my glasses. Then this afternoon, several smiles at Ben, several smiles at Tanner and several smiles at mom. We can barely contain ourselves - as I’m sure you can tell!

Samuel’s new diet is going slow. Things have been giving him an upset stomach and gas, so we have been going VERY slow. I have also been reducing his Keppra slowly for about a week now. I don’t know if that has to do with the appearance of his smiles, but I will continue until I see an increase in his myoclonus.

Otherwise, therapy as usual. And Samuel’s posturing can still be pretty bad if he gets at all upset. And the smallest things can upset him. He really doesn’t posture if he is laying on his left side. But on his right side, he can really get going. And I’ve decided it’s his left leg that leads it all. If you can keep that “offending” little leg bent, then you can pretty well prevent the posturing altogether. But we can’t hold his leg bent all day, so we do what we can.

Samuel is also eating better. By better, I mean a few bites of yogurt each day. But at least he isn’t freaking out everytime we put the slightest bit of anything in his mouth. He really does have the capability of eating (at least mashed foods), but it is going to take a lot of practice. Our biggest hurdle right now is he hates sitting up and it’s not that easy to eat when you’re laying down :).

Lastly, Samuel still really enjoys his videos. As soon as he wakes in the morning, he wants UP! And sometimes, that’s at 5:30 or 6 am. So I lay him on the floor and put a movie in the laptop and he is content to watch it while I sleep another hour or so. It’s so funny, but he will fall to sleep in his bed on his own at night, but other than that, he hates it in there. He’d much rather be on the hard floor. Funny kid.

Oh, one other thing. We had lots of blood work to check his thyroid and calcium and other fun stuff. The doctor says his parathyroid test came back strange - showing that his zinc is low and his albumin is high. His doctor is trying to get someone to interpret the results. So we don’t know what it means yet.

Keep praying. We are specifically praying for Samuel to keep smiling, for his tone to normalize (posturing to stop) and for him to be able to communicate with us. Maybe if we all pray for the same things, we’ll get faster results.

Thanks so much!

Love,
The Jewkes

One change we saw this week were “real” tears. Since the accident, Samuel has done a lot of crying. But I have only seen him actually cry tears a handful of times. This past week, there have been about 3 different times that little tears have come streaming down his face. One good example was when his speech therpist showed up the other day. She went in his room, sat down next to him and said hello. He looked at her for about 30 seconds and started crying. It wasn’t a dramatic cry, and he wasn’t posturing, but little tears were streaming down his face like he knew why she was there and he just didn’t want to do therapy. It was cute and heart-breaking at the same time!

Samuel is still calmer most of the time, although he does posture throughout the day. But it is to the point now that it seems like he is doing it because it’s the only way he knows how to move and he really wants to get up and move around. It only lasts for a minute or so, and it only happens 2-4 times in an hour, which is a far cry from 6 months ago when it was happening every few minutes and he seemed to have no control over it.

Another fun change is that Samuel has decided he loves to have his back rubbed or massaged. He will lay on his tummy and let me rub away. It is a really good thing because his back is so tight and his shoulders are also. It gives me a good chance to try and loosen things up for him.

Other good news, I actually saw Samuel roll from his back to his stomach twice this week. He usually goes clear from one side to the other and then to his stomach. But he is also usually mad and arching his back which gives him a good boost to the other side. But once he’s on his side, he pulls in his legs and his head and that carries him to his stomach. But, of course, he can’t figure out how to get back. He is also getting better at being happy on his stomach for longer periods of time which is a good thing.

We started Samuel on his new diet this week. We are going VERY slowly to try and get him some “real” foods mixed with his pediasure just for better health and hopefully, more weight. We’re adding some juiced vegetables and fruit, some nut milk and goat milk to his diet. Hopefully, it will help with his digestion also. I did weigh him this week and he weighed 25 pounds on my scales. Another 5 pounds would be nice.

Best of all, I do believe that Samuel is seriously attempting to talk. He can nearly say “go” and “on” and “all gone” and “ya”. It’s not entirely consistant, and you have to show him how to do it a bunch of times before he will. But he pays attention to your mouth as you say it and then tries to repeat it. No one would understand what he’s saying except us, and we’re a long way from him just saying things on his own. But it’s a start and we are VERY excited!

Last of all, Samuel half smiled today. I asked him to look at mommy and when he did, I must have looked funny, because one side of his mouth grinned about 3 times. That is certainly the thing we miss the VERY most is his contagious smile!

Well, until next week - KEEP PRAYING!

Love,
The Jewkes

The NACD also noticed a huge improvement in the feeling in Samuel’s legs and feet. When we originally visited, Samuel did not even seem to have a Babinsky reflex. (That is something that doctor’s check on infants to ensure that they have feeling in their feet.) On this visit, his reflex was much improved showing that he is feeling much, much more in his legs and feet. That would probably explain the fact that he is moving and bending his legs much more than before.

Samuel also had several days last week where 3 therapists came to our home in one day. As long as we spread the visits apart, Samuel seems to do pretty well. It is hard for him to work for an entire hour at a time, but he does calm down fairly quickly if he does get upset. (I’ve actually had 2 therapists comment on how quickly he now calms down when he does get upset.)

Samuel’s new physical therapist is my favorite by far. He is our 3rd physical therapist because we kept asking for one with more pediatric experience. He is working on strengthening exercises with Samuel to improve the muscles used to roll over and to hold up his head. Samuel seems to really try and works so hard when that therapist is here. I can see him strengthening those muscles each day, and it’s pretty exciting! And today, Samuel rolled clear over from his back to his stomach. He cheated a little because he got his left hand back behind him before rolling over, which made it much easier, but he did it! I left him in his room on his back and when I came back, he was mad because he was stuck on his stomach! He also can roll from one side to the other. Most often, he rolls from his left side to his right, but I know he can do it both ways. He is definitely moving more and more each day. It’s fun to see.

Another fun change is Samuel is babbling more and more. The other night, I could have sworn he was singing to me as he lay in bed trying to fall to sleep. We have also heard him “say” lots of different words. It’s a strange thing when you’re saying the same word to him over and over and he’s trying so hard to say it and then something comes out that sounds just like it. It makes you want to jump up and down, but then again, you know it was probably just a coincidence and not the word at all :-). Oh, well, it’s exciting to hear either way.

I’ve also been letting Samuel choose the movies he wants to watch. He seems to choose certain ones that are his favorites by staring at them when I hold up the choices. We are also working with him to get him to blink his eyes to say “yes”. We already know when he doesn’t want something because he gets upset. But it would be nice for him to be able to tell us what he does want.

Well, overall, Samuel is still calmer, sleeping better and just doing better. He seems to have regained his drive to relearn all that he has lost and he seems to be suffering so much less. We are so grateful for these small changes that are such miracles to us!

Keep praying. We sure need it :-)!

Love,
The Jewkes

Some of the funnest things are that now he is calm enough that we can play with him for short periods of time and he seems so interested - like he is having a little fun. He will watch things so closely and seems to really enjoy some of the toys he got for Christmas. He especially loves his little farm animals, train and new movies and he seems to be trying more and more each day to participate as we play. It is so good to see!

Two major things we’ve noticed are that he is bending his legs on his own and attempting to use his left hand. He was trying to use his right hand a few months ago, but doesn’t seem very interested in doing so now. But now his left hand is always busy trying to move around. And he seems to be able to have the ability to grasp and release things with it. It still needs a lot of work, but I do think he can do it. We are pretty excited about that. As far as his little legs, for the first time in nearly 6 months, when I lay him on his stomach he tries to pull his knees underneath him. That is such a huge step from arching his back and pushing his legs into the air. If he can get to the point where he can pull all 4 limbs underneath him, he can relearn to crawl. That would be wonderful!

He also suddenly seems to prefer to turn his head to the left. I don’t know if you remember, but for months, he kept his head tightly turned to the right. Then, he began to turn it midline, and SOMETIMES to the left. Now, I have to really coax him to turn to the right. Little stinker! But it’s not as bad as it was, and he can turn his head when he wants to. He definitely has control over that - although he still cannot hold his head up on his own.

Which leads me to one other bit of good news - our insurance company approved sending each therapist to our home twice a week. That will make for 6 hours of therapy from them and about 2 hours of therapy from the up to 3 program each week. It still isn’t as much as we would like, but it’s a step in the right direction. It is probably as much as Samuel can handle at this point anyway.

Thanks again to everyone and please keep praying for our little guy!

Love,
The Jewkes

Surviving Miner Is in Coma, Doctors Say

By VICKI SMITH

PITTSBURGH (AP) - The lone survivor of a coal mine explosion that killed 12 other miners was moved Thursday to a Pittsburgh hospital to undergo oxygen treatment, hospital officials said.

Randal McCloy Jr. was in a coma and appeared to have suffered brain damage, according to a doctor. He arrived at Allegheny General Hospital after being taken by ambulance from West Virginia University’s Ruby Memorial Hospital, said Tom Chakurda, a spokesman at Allegheny.

Weather conditions did not allow him to be flown to Pittsburgh, Chakurda said.

“Mr. McCloy’s organ systems have responded fairly well to the treatment he has received over the last 36 hours at WVUH,” said Dr. Larry Roberts, director of WVU’s trauma center. “His left lung is no longer collapsed. But we have not seen the neurological improvement we would like to see.”

McCloy, 26, of Simpson, was rescued early Wednesday after being trapped in the Sago Mine near Tallmansville for more than 42 hours. Twelve other miners died.

McCloy was struggling with the effects of oxygen deprivation to his vital organs, including his brain, and remained in a coma, Dr. John Prescott said Thursday at the WVU hospital.

Prescott said McCloy’s coma is not medically induced and that drugs initially used to sedate him are wearing off.

“We do believe there has been some injury at this point to the brain,” Prescott said.

With the consent of McCloy’s family, doctors decided to transfer him to Pittsburgh for hyperbaric oxygen treatment. The treatment helps get oxygen to the body’s tissues, including the brain, and can help increase blood cells to fight infections or promote healing of injuries.

I hope that the treatments help this man. And, hopefully, someday, doctors will know how to help ALL those who are brain injured. For now, we’ll just have to keep doing the best we can with the little knowledge we have and the tons and tons of prayers you have all offered up for our little Samuel :-)!

Love,
The Jewkes