No news is good news, right?
February 9, 2009 | Updates
I know that’s not what you all want to hear. I know you want to hear from me even if things are fine…which is silly because I’m really not all that interesting :). But, really, I know you all just want to know how Samuel is. And I finally got so many emails wondering about him that I figured I’d better post and SOON. Besides, my mom says “the masses are wondering” which means she’s getting as many emails and questions as I am. Man, it feels good to be loved!
So, we’re doing fine. Really, if we weren’t, I’d let you know. So don’t ever worry about that. Things have just been so completely hectic. And, honestly, I don’t even know how to explain why. Life, I guess. Plus, since it’s been a whole month since I posted and my short term memory and long term memory are both shot, I don’t even remember what we’ve been doing. That’s pretty sad, I know.
Anyway, here’s the quick scoop. Samuel’s seizures have come back the past few weeks. They have come on slowly and seem to slowly be getting worse. They are more convulsive than they’ve ever been before. But they don’t normally last more than about 30 seconds. I’ve been watching them. And they aren’t bad enough to warrant doing anything about them…yet.
But I should back up and tell you that even before my last post, I switched Samuel back to his canned formula diet. I know you’re thinking, “WHAT?!” But here’s the deal. One night, as I was tucking him in bed and just saw how thin he was and the dark circles under his eyes, I got completely scared. Scared that he wasn’t gaining weight because of me. Scared that I might cause him harm in any way. And I decided right then and there that I was going to put him back on his formula and get his weight back up. And I knew that I probably could because I can cram more calories in him on the canned formula then on the homemade stuff. And, it worked, for a while. He did well on the canned formula and he got up to like 35 lbs. And all was good. Until he started throwing up all time. And I mean all.the.time. So, he’s now back down to like 32.5 lbs. and I honestly don’t know what to do about that. And besides, I think the seizures are coming back because of the canned diet. So, I’ve got to figure something out. Just not sure what.
At the same time, I’m trying to get things together for a few things I want to do for Samuel - including getting him back into hyperbarics. (Yes, I’m STILL working on that one.) Our insurance doesn’t want to pay for it. And the clinic 20 minutes from us is 2.5 times the cost of the one that is 2 hours from us. So, I’m pushing to see if I can appeal it with our insurance because it sure would be easier on everyone if we just had to drive 20 minutes away for each session instead of nearly 2 hours. Plus, I still really want to go see Dr. Tennant and we have another ABR evaluation coming up in the near future. So, that’s taking a lot of my time. And, on top of that, I’ve had to work a lot in our business lately. So, it’s hectic.
Now, I know you’re all wondering why I said we were fine if there’s so much going on. But we are fine. And that’s because Samuel is happy. He’s back to school a few hours each day. He is smiling all the time. And, for the most part, he is his jovial self again. And THAT, I can do. So, we are doing fine. I have struggled lately with being sad again about his accident. I don’t know what it is. But I’ve really had a hard time thinking about it a lot lately and just really missing him. I don’t really think that’s anything that will ever go away, though. It’s easy to ignore when things are busy. But it always seems to crop up when things are stressful, too. But I’m ok. I just really and truly do miss him.
The other day as I was carrying him to his class, I passed a little boy in the hall. For a second, I wondered why he was at the school. He seemed too small to be there. But he had his backpack and seemed to know right where he was going. He looked at me as I walked towards him and I looked into his little eyes and smiled a big smile (like I always do so that kids won’t be afraid of Samuel or worried to talk to me if they have questions.) He smiled the cutest little smile back and said, “hi” in a cute little voice and in an instant my heart broke. He had the cutest little curly hair that reminded me of Samuels. And he turned at that moment to walk into his kindergarten class - the class that Samuel would be in this year if, well, if things hadn’t changed 3 1/2 years ago. As he turned, it hit me, that he was just Samuel’s size, just Samuel’s age, just like Samuel would have been. I can’t seem to forget that little boy. I don’t think I really need to explain why. But, it makes me sad when I think of him.
Anyhoo…
The only other thing that really sticks out in my mind over the last month is the day we had to get Nathan’s 4 cavities filled. I had spoken with the dentist a month before and we had decided to just put fillings around 3 sides of each of the top front teeth that had cavities because that would be the most natural looking. So, I took him in and we got him all ready and the dentist started out by grinding down the bottoms of his teeth a bit. I was concerned with keeping Nathan still and figured the dentist was just taking off a bit because the fillings would make the teeth a little bigger. When I realized how much he was grinding off, I asked what he was doing. He replied he had to grind them down for the caps he was putting on. Well, that wasn’t what we had discussed! But at that point, it was too late. His four little front teeth were just little posts, ready for caps. I wanted to cry, but it would have been pointless. So, I held his little hands as they finished the caps. By the end, my arms were shaking, I think mostly because I was just so affected by what had happened. I know it seems like such a little thing. But it really affected me. And I still feel sad everytime I see his little teeth. I think I’m upset that I didn’t prevent the cavities. And that I didn’t notice what the dentist was doing until it was too late. And that he had to go through that experience. I think I just don’t do well anymore with seeing my kids endure things that are beyond my control. And the funny thing is, I think maybe it’s all just because I loved those little teeth. Nathan’s smile is something that I know by heart. It’s something I’ve memorized. And for some reason, I adore it. I think it made me sad to loose that little part of it. And I know it’s not that big of a deal. But for some reason, it really was for me.
Anyway, that’s the things I remember of the last month in a nutshell. And now that I reread it, it sounds REALLY depressing. Sorry for that. We really are ok. Like tonight, I had a really great night. Samuel was so happy and Nathan was so cute and I got to spend some good time with my other boys and with Tom. For some reason, there were just a few hard things that stuck out this month. But overall, we really are ok.
If you keep us in your prayers, then please pray that I can know what to do about Samuel’s seizures, his diet and his weight. And then just keep thanking God that he’s happy. And if you feel like it, you can maybe put in a little plug for me that I won’t loose hope and get down too often. And that I won’t miss him too much.
Thanks everyone for thinking of us and caring for us and missing us when you don’t hear from us. That’s one other thing that has happened over the past month. I’ve been brought to tears many times by the caring of others - from children to adults - from large things to small. I always feel inadequate to be on the receiving end of such kindness and to be part of people’s lives who are so good to us when they don’t have to be. Thank you all so very, very much! You, too, bring great joy to our lives.
Love,
The Jewkes
P.S. TOTALLY off topic…but, ever get that “money on your back feeling”, well Nathan knows just how you feel! Actually, he thinks he’s Curious George half the time, so these are just his buddies. Had to share..just too dang cute!
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February 9th, 2009 at 6:44 am, Sharon J. Says:
Thank you for your post. I have been getting worried, too. I was so happy to receive your new update this morning. I continue to pray for all of you. I will pray that you will make the correct decisions for Samuel. If I had a flower for every time I think of you, I could walk forever in my garden.
February 9th, 2009 at 1:06 pm, Natalie Says:
Hey, girl. It was good to hear from you guys. You have been a busy lady! I’m sorry to hear about the probs with his food. I’ve been in a bit of a struggle with what to do with Brea’s as well but not to this extent. You are always amazing me at how you just take charge and try stuff. And the kindergarten boy-totally feel those feelings too. It’s hard to not ‘what if!’ Nathan is sure adorable in his picture. I miss ya and hope this month is a good one for ya. Love ya.
February 9th, 2009 at 5:56 pm, Darlene Says:
Hi Teresa,
I too was beginning to wonder how the Jewekes have been doing? Samuel will gain his weight back in time. Maybe a mixture of both may help or would that be to harsh on his little tummy? Not sure about that kind of stuff so don’t take my advice. I love the pic of little Nathan,that smile of his is beyond precious. I will be keeping you in my thoughts and prayers.
Much love……………………………….
February 15th, 2009 at 8:20 pm, M. Cullumber Says:
Just read your latest update. To some extent I know how you feel when one of your children just isn’t what they could or should be. It is hard, especially when you know that there is nothing you can do and there is no going back to try something else. We all just do what we can with what we are given, and I think that you are doing wonderfully! Sure the heartache will be there and the “what if’s” will crop up every now and again, but if you don’t let them linger and instead look at how far you have come,then you can get over that hurdle. And it is a hurdle! Don’t beat yourself up over it. We all have hurdles and we must all work at them the best we can. Allow yourself to grieve over what has been lost, then pick yourself up and move on.
Even Nathan’s teeth are a big deal. I work in dentistry and I know how much a smile can mean, especially the smile of a loved one. Grieve the smile and then look forward to the brand new teeth that Nathan will get in a couple of years (and then floss, floss, floss)That was my plug as a dental hygienist:)
Anyhow, keep up the good job that you are doing. This entire ordeal has been new territory for you and as I have read your posts and watched you at church I can see how dedicated you are to your family. Our Heavenly Father asks no more from us than that.
My prayers are with you, and I know that you will find a way to get the weight back on Samuel and to keep him healthy.