A couple of things…
July 28, 2009 | Updates
This post was written sometime aroung the end of May…just now getting around to putting it online.
Yesterday Samuel woke up at about 7:30 am. When I went to take him to school at 8:30, he had fallen back to sleep. That’s not entirely unusual, so I took him anyway thinking he would wake up soon. When I picked him up at noon, the teacher said that despite all her efforts, he had slept through the entire day. I brought him home. I cleaned out his ears (something I’d been dying to do for weeks). We did ABR. And he slept through everything until about 6 pm. And then he was up. And fine. Weird.
The only thing I can figure is he must have had a huge seizure while I was in the shower or something. He’s been having more of them lately. We’ve been slowly raising his Keppra from 1.7 ml’s twice a day to 2 ml’s twice a day and now to 2.2 ml’s twice a day to offset the weight that he’s been gaining lately. Did I tell you? He’s up to 36.5 lbs! So we’re hoping the increase in the dose will keep the seizures in check. I think it will. (Update notice here - Samuel is now more around 37.5 lbs. Way to go, Samuel!)
The other thing I wanted to write was that Samuel has appeared to be more aware and understanding things lately. He seems to pay attention more when I talk to him and I often get the feeling that he knows what I’m saying. The other day I took him for a walk and he was good for quite some time. But then he started to fuss. I was talking to him and asking him what was wrong and in the conversation said, “Do you want to go back and watch a movie?” He was wiggling from side to side and not paying attention to me until I said that and then his eyes came right in contact with mine and he held still and smiled. It was so cute!
A few nights later, I heard him fussing in his bed. He was supposed to be going to sleep so I left him alone for awhile hoping he would give up. But he didn’t so I went to check him. It was dark in his room and I could see something all over the top of his face. I thought, “Oh, crap! He’s spit up and it’s all around his eyes. He’s probably been calling me for that!” But as I flipped on the light, I realized it was all tears. His little face was covered with real little tears…sad tears. I picked him up and held him and we talked for awhile. He just seemed sad and for a minute I wondered if he was sad because of how he is. So we talked about fun things…the field trip the next day, his fun friends at school, etc. He slowly calmed down and let me put him back in his bed after awhile. It broke my heart though.
People often ask me if I think Samuel will get any better. I think that we all improve and progress over time. I don’t think Samuel is any different. His improvements will just come at a much slower pace. I sure do love that kid, though. He’s definitely got a big spot in my heart!
Teresa
RSS feed for comments on this post.
TrackBack URI
July 28th, 2009 at 12:33 pm, Erin Says:
I’m so excited that you are seeing improvements for Samuel. He is such a cutie. I definitely agree with you on the progression issue. It seems for us that the less I worry about it the more progression there is.
That broke my heart about him crying. Colby does that sometimes and it just makes me want to cry with him. I think it’s a moment of understanding that they travel a hard road through life. I guess it’s kind of like my monthly break down over what we went through. I figure if anyone is entitled to a bit of sadness somedays it’s our kids. But I am always amazed at their cheerfulness and amazing tenacity the rest of the time. Anytime someone tells me they don’t know how I do it, I tell them that since Colby doesn’t have a choice neither do I. So I better do the best job for him I can. I think you are awesome in all that you do for Samuel!
July 28th, 2009 at 2:14 pm, Darlene Says:
Hi Teresa,Tom,and boys:
So glad to hear Samuel is gaining his weight back. Good job buddy! I was so sad to hear Samuels crying story,I a sure you that he does understand you Teresa,more then you even realize he does. His ability to gain back some of the things he once did before the accident will happen for him in time. It will just be at a slower pace. I know its hard for your family to re-live that day of his accident but if you look at him then and all he had been through, to who he is now,you will see what a remarkable milestones it is that he has accomplished already today. You got a precious little boy there thats for sure Teresa and Tom. I know even tho I never met Samuel in person,I have fallen in love with the little man just as if he was my own. I hope all is well with the big brothers and of course sweet little Nate too. Enjoy the last few weeks of summer. Take care and God Bless!
July 29th, 2009 at 1:14 pm, Natalie Says:
This is such a great post about Samuel. It breaks my heart to think about him being sad! What a special, special boy he is. I am grateful every day to know him–and you!