Archive for February, 2009
Can I get a weekly update, PLEASE?
February 27, 2009 | Updates
You know on the homepage of this website where it says, “Click here for weekly updates?” Well, I don’t change it because I REALLY DO mean to post every week. It’s just that weeks have gotten shorter than they used to be or at least it seriously seems that way. I mean, honestly, it’s almost March and we JUST BARELY had Christmas. Ah, well…
I am posting today because of my mother or, actually, mothers. Between blood, step and in-laws, I have a few mothers. But 2 of them in particular keep kindly reminding me that I need to post SOMETHING. And I fully agree. But I have been ignoring their kind reminders because, well, my desk is piled high with so many pieces of paper and my inbox has over 400 emails in it and I have a to do list that is probably 4 pages long…TYPED. But my ignoring ended today as I read cjane’s post about the “Ghost of Disobedience” and realized I SHOULD DO what my mom tells me to. And, thus, this post.
Ok, onto Samuel. We went to Texas for 10 days for an ABR review and to see Dr. Tennant. We left on the 12th and returned on the 21st. In the end, the trip was good, but too long. I just can’t plan being gone for that long anymore. It is WAY too hard.
Samuel was so very good on the plane rides there. I had 1 hour of sleep the night before we left because, well, I was ready to go just 1 hour before we had to leave. So I was a good case for not much patience, but Samuel was such a good boy that all was well. We had a short layover in Denver and then arrived in Dallas without any huge hassles. We found our hotel ok and it was a pretty uneventful trip, which is a good thing.
The next 2 days we spent doing training for ABR. We were supposed to have training for 4 days, but there were no other families in our group, so we had our instructor all to ourselves. That made things go a lot faster, so we were done in half the time. That gave us the time to do a little sightseeing so we were able to see the JFK Museum. I enjoyed it - even though I’m not a huge history buff. And Samuel was a good boy the whole time.
Monday, we went to see Dr. Tennant. We had attended his seminar quite some time ago and this was our first chance to come to Dallas and actually have him meet Samuel. He did a full exam on Samuel and gave us a bunch of ideas on things to do for him concerning diet and other issues to ensure his body is in the best condition for healing itself. He did comment that Samuel seemed much more aware than some of the other near drowns he has treated and attributed that and the good readings on many of the tests he did to the hyperbaric treatments that we’ve done with Samuel in the past. We then stayed the remainder of the week to do in-office treatments in Dr. Tennants office. I will write more about those things later on. They are pretty detailed and hard to explain, so I’ll leave them for another post.
Tom had to fly back several days before Samuel and I did, so Samuel and I made the trip back alone. We did pretty well. Samuel had been a little upset the last few days that we were in Dallas and was not nearly as happy on the plane ride home. I finally gave him something to help him sleep through the second flight as I was sure he would scream the whole time if I didn’t. I got A LOT of comments from people on that flight. Mostly things like, “Wow, when he’s asleep he’s really asleep” or “Sheesh, he’s really out!” It’s always hard for me to know what to say to stuff like that because when he’s sleeping, he looks perfectly normal and people must really wonder why a 5-year-old needs a stroller and a carseat to travel on a plane and why in the heck his mom carries him everywhere. I try to just politely smile and say, “Yea, he’s really a deep sleeper.” But by about the 50th person, I really wanted to just say, “I drugged him, I admit it. I know that sounds crazy, but he has brain damage and would have screamed and kicked and been upset the whole way if I hadn’t. It’s prescription stuff. I’m allowed to do it. He really isn’t a sleeper AT ALL without it. So, anyway…” But I didn’t. I figure that just freaks people out and makes for a long explanation on my part, don’t you think?
So, I’m in sort of a funk. Not sure if you can tell. I think it’s a combination of severe and endless stress. It makes me forgetful and a little funky. But I’m just letting it happen because being completely normal is a bit overrated, don’t you think? Plus, being away for awhile starts to drain on me A LOT. I miss my kids and I know there are a million things piling up for me to do at home. And then there’s just the “people” factor when we are constantly out and about. I finally figured out that in our situation, you only really notice the extreme people. There are those wonderful people who go out of their way to help you and simply talk to Samuel like he knows what they’re saying. For instance,
- the doorman at our hotel who held the elevator for us every day
- the nice rental car lady who carried all our bags nearly a block to the bus
- the bus driver who drove us clear back to our stop when we missed getting off
- the 2 nice men who sat next to us on the plane WITHOUT hesitation
- the airport guy who personally carted all our stuff off the plane and then back on during our layover
- the flight attendant who made sure we had assistance getting from the plane to our car without even being asked
- and so many other wonderful people.
And then there are the people who stare obnoxiously to the point where I want to say, “Hey, do you NEED something?!” or at least buy Samuel one of those shirts that says, “Keep staring…maybe I’ll do a trick!” Add to that the fact that Samuel isn’t as comfortable when we’re traveling and he deals with it by constantly griding his teeth and whole bunch of a lack of sleep on my part and, well, I get funky.
Anyway, I’m rambling and we’re just so glad to be home. We saw good things with ABR and they should be sending me some comparison pictures soon, so I’ll post those when I can. And Samuel has gotten right back into his routine this week, so that’s a huge blessing. I can only leave you with one picture because even though I took my camera with us to Dallas, I didn’t take any pictures. Well, that’s not true. I tried to take pictures of all the crazy flocks of birds there - like 500 in every tree I saw - but they didn’t turn out. And nothing else was really interesting enough to snap a picture of. Plus, reference the aforementioned funk and you’ll know I really didn’t feel like taking pictures. So, you get the one picture I took of Samuel in a souvenir shop cause he looked like a hoodlum in this Texas cap! The only reason I put it on him was because I’m making him wear his little swim caps again since he’s growing a bald spot on the back of his head. I was hoping this hat would work instead, but I just couldn’t get past the sterotype…
Well, that’s it. Sorry for the lack of a one track mind in this post. I’ll do better next time - PROMISE!
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.
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.
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!