Archive for October, 2010

Swamped…

October 28, 2010 | Updates

So, I’m swamped. The farewell went great. Over 100 people came…and saw…and ate…and talked. My house never seemed so tiny, so full and so “just right” at the same time. It was great and so fun and I’d do it again in a heartbeat if I had one ounce of energy left in me :)!

We have lots going on and we’ll be letting the oldest move on to a new adventure in just a few weeks. Happy and sad all bundled into one.

I promise to post as soon as I can. But don’t hold your breath because I’m pretty sure it won’t be for at least a week and I’d hate to be responsible for anyone’s untimely death!

Until then…

When you can’t stay in bed…

October 21, 2010 | Updates

I’ve decided you guys should all charge me for your time. As I type away on this website (on more difficult days), I can feel the tension leaving my neck and the important things come back into focus and I know that whatever stress I was feeling was just for a moment as I leave it all behind in my writing. So, thanks! (And sorry that I won’t be sending you each a check, it’s the thought that counts…remember!)

This morning was one of those mornings where I thought to myself at least a dozen times that we just should have stayed in bed. Trouble is, the rest of us would go back to bed, throw the covers over our head and sleep off the ridiculous morning. Samuel, on the other hand, would lay in his bed, wide awake, and his impatience and wiggling would increase as the hours passed and his boredom grew. So, for Samuel, the thought is more one of - we NEED to get to school because staying home all day today would be a REALLY bad idea. (Which leads me to a great thank-you to all of his kind and patient teachers who take my wiggly and not-so-little boy Monday thru Friday for 5 hours each day and keep his little mind busy. You save me on days like today…seriously!)

I woke this morning to my alarm, which is unusual as Samuel usually wakes me a few hours before that with noises of struggling to free himself from his ABR machine. When I got to his room, I discovered that he had wiggled his ABR band and padding from his hips to his armpits, which is really no big deal except that it means he’s been working on that for a good hour and has riled himself right up into wiggling hysterics for lack of a better word.

So he and I started our little game of “Mommy is going to try to take all of this stuff off you while you curl up into the tightest ball possible, kick your legs, swing your arms and roll away from her making it nearly an impossible task.” I don’t know if he’s trying to help or hinder, but I’ll just say that it certainly isn’t help! Once I unrolled him from the ABR mess, I discovered that he had unhooked his tube somehow and was laying in several ounces of formula. At the same time, his diaper had leaked so he was a wet mess. That’s not so unusual, though, so I just tore off his clothes, replaced his sheets, cleaned him up and replaced his diaper then left him to hopefully calm down a bit before I tried to dress him because my interventions just made his wiggling WORSE.

Twenty minutes later we started the game of “Let’s see if mom can get to your feeding tube while you put your ankles on your head and hold them down tight with your little arms”. A few minutes into that game and I gave up and pulled him from his crib and onto the floor so I could hold his legs down with my leg making the game a little fairer. (Since 4 limbs against 2 simply is an advantage for Samuel and a serious handicap for me.) And I won! (I thought! as I hooked up the tube and started giving him his meds.) But Samuel had the ultimate move up his sleeve as he swung his arm around, grabbed the tube and yanked it from his stomach - taking with it his feeding button.

From me there just escaped a small gasp and the quick realization that we were definitely going to be LATE.

I grabbed the insertion kit from under the bed, ripped open the lid, got everything ready and ran into my next problem. Samuel was NOT going to cooperate with this. So, I sat on his legs while Ben held his arms and we inserted the button. Viola! The worst was over, right?

Except, that Samuel had different plans which included wacking me about 27 times with his arms and legs while I tried to pull on his clothes, sweeping his arm across the feeding tube again as I tried to give him his breakfast and this time he succeeded in opening the small port on the end of the tube while I was pushing formula through the large one. The result was formula flying 3 feet across the room, across my arms and across Samuel in little droplets that mostly hit the carpet. Good new is that the dog was right there ready to clean that mess up for me, which is good because at this point I was just a little in awe at the disaster we had created in the last few minutes.

As for the rest of the morning, it included more wiggling, a bunch of spitting, drooling and coughing from Samuel since when he gets all riled up his stomach reacts with reflux and that on top of the little cold he’s had isn’t the best combination. Oh, and then there was the spontaneous bloody nose he got that was the icing on the cake.

By the time we got to school, he was ticked at me and I was ready for a serious NAP!

A fast run to the door to get out of the wind (since he absolutely hates the wind) and I left him with his cute teachers who he’ll probably be a sweet little angel for since he’ll have a few minutes to calm down and do some things that aren’t completely annoying for him.

As for me, I drove home, wrote this all down for you sweet people, and now I’m headed up to take a seriously HOT and LONG shower to wash away this morning (especially the formula smell which isn’t my favorite) so I can pick up that little tyke in a few hours and have what simply has.to.be an easier afternoon.

I call Samuel things when he’s like this - things like pesty, sinker butt, goof ball. You simply can’t be mad at the kid when he’s like this because you know he doesn’t mean anything by it. He’s just trying to react to the things around him and wiggling is about all he’s got. (Well, there is that little half cry he gave me this morning when I put kleenex in his nose to stop the bleeding. But that’s even worse because it tears at my heart strings.) Apparently, though, I must call him those things a lot because the other day, I was trying to say something and Nathan cut me off and finished my sentence. It went something like this…

Me: “Samuel is…”

Nathan: “A PESTY!”

Oh, my.

Here’s to hoping your morning went great and that ours will too…tomorrow :).

Oh, and just in case you were wondering, I wrote this ENTIRE post with Nathan talking to me the ENTIRE time. Really. I know you don’t believe me, but I did. That kid can TALK! So if any of this doesn’t make any sense, you can blame it on Nathan’s continuous chatter or my fried nerves…whichever…it’s all good with me.

Fall pictures…

October 19, 2010 | Updates

You know when you have a million gazillion things to do and you can’t get any of them done because (a) none of them are appealing and (b) you just don’t know where to start?

Well, that’s me and I’m not sure I really care.

Except that I do.

And in a few days when a ton of people show up to my messy house for Tanner’s farewell that I am completely unprepared for, I’m going to wish I’d taken 2 seconds to put a few things away.

But right this minute, I don’t care and I’m doing something that I want to do, which is share some pictures I took of Samuel and Nathan while everyone else was gone for the weekend. In a way, it’s therapy for me. It’s a way to hold my kids in time just the way I see them. It’s a little magical and I love it.

Enjoy…

No more Keppra…

October 14, 2010 | Updates

Well, I got together with the pharmacist and we determined that I had been giving Samuel only Neurontin and NOT Keppra for the last month or so. Honestly, I hate when I mess stuff like this up. I’m so careful to give him his meds every.single.day. I think I’ve only missed once in the past 5 years. And to realize that I goofed this up really erks me.

Anyway, I’m trying to look at it as a blessing in disguise. THANK HEAVENS Samuel has been fine for the last month without his seizure med. And THANK HEAVENS he hasn’t had any bad reactions from going off it cold turkey. And THANK HEAVENS the “double” dose of Neurontin I’ve been giving him wasn’t an overdosing dose since he was on such a low dose for his size that it ended up being about the dose he should be taking anyway. 

In the end, I guess the good news is he’s off Keppra and doing fine. In fact, we’re slowly backing off the Neurontin as well and he’s doing fine with that. In addition, I’m checking med labels more carefully. (In fact, I’m a little neurotic about it for awhile at least.) And the bad news…well, I guess I’m not perfect, which is never good news, but it wasn’t a secret either :)!

Here’s to being grateful that’s the worst the bad news got!

Irony…

October 7, 2010 | Updates

Tuesday was parent teacher conference where Weston’s teacher told me about an upcoming test in their English class scheduled for Thursday that could help raise Weston’s grade from a B to an A. I was bound and determined to ensure he studied for it.

Enter Wednesday…

It wasn’t a good day. I’m not even exactly sure why, but I felt so drained by about 5 pm. I chalked it up to Samuel’s dentist appointment where we strapped him to a board and cleaned his teeth while he screamed for 20 minutes. He was mad at all of us for a good hour and a half after that. It always wears on me to see him sad. And in the process of cleaning his teeth, the dentist found a loose tooth, which surprised me, and then a missing tooth, which shocked me. I swear that tooth was there yesterday and I didn’t even know it was loose! And now…well, it’s just missing which is always a bit of a concern because it could have been aspirated. Tiny things like that add up to be emotionally draining.

Eleven p.m. that night, I realized that Weston hadn’t studied for his English test. A sermon you would be impressed with escaped from my mouth and then we dove into the fastest study session of our lives in an effort to get our tired selves to bed. One of the literaray terms we studied that night was “irony”, which I explained as an unexpected outcome that is usually the total opposite of what the character had in mind. For me, it’s usually those moments when I throw my hands in the air and say, ”Seriously?”

Enter Thursday…

Tanner was set to go through the temple at 4 pm that afternoon. This was something I COULD NOT MISS and it’s not something we could reschedule. So, I had to be there on time (which is hard for me). That morning, I dove into the list of things I had to do, not even taking the time to put in my contacts or do my hair or makeup. I figured I’d leave myself a few hours of leeway before the temple session where I could get ready WITHOUT feeling rushed and thus go to the temple in the right frame of mind.

At 2 pm, Weston called me from school. Someone had been joking around and pushed back on a door that Weston was walking through. It hit his head and then his head hit a brick wall and he thought he might need stitches. Suddenly, my idea to make myself presentable later in the day became the worst idea of all, but there was no time to do anything about it.

Guess what literary term flew through my head? Irony.

So, I left the house in my big untidied mess with Nathan in tow (in his pajamas with NO shoes) and grabbed Weston from school. I then picked up Samuel from school (where they informed me he hadn’t been feeling well and I instantly worried that it might be that darn, possibly aspirated tooth) and we headed to the doctor. It was a measly 3 stitches, so no big deal, but it did take 2 hours and put me in a complete state of adrenaline rush. I flew back home, put myself somewhat back together and luckily made it to the temple just in time.

As for my frame of mind…well, it was a bit shot!

Enter Friday…

I checked Samuel, listened to his lungs, ran through all of his symptoms and determined that he just has a cold.

Again, ironic (although in a good way this time). What are the chances he’d come down with a cold THE DAY AFTER we realize he might have aspirated a tooth. Sheesh.

Later that day, someone on our near-drown yahoo board asks me to explain how I got Samuel’s seizures under control. I tell them all about vitamin D, but then let them know that I also have him on Keppra because I’m too big of a chicken to see if the seizures would stay at bay on the vitamin D alone.

Enter Saturday…

I’m trying to get a few things done and one of those ends up being refilling Samuel’s medications. I grab the bottles of Keppra and Neurontin to get the RX numbers and pharmacy phone number. They are both liquid meds that we have specially compounded for Samuel without any artificial colors or flavors because those things tend to increase his seizures. Keppra is a white liquid and Neurontin is a clear liquid. When I look at the RX numbers on the bottles, though, they are the same. I’m a little confused because I remember that they used to be different. And then my eyes drift to the medication names and I realize they are the same.

Huh?

Ok, I KNOW I refilled the Keppra last. And it is in the smaller bottle. And it’s a white liquid. And all of that adds up. Except, that the wrong medication name is on the bottle. I never looked at that. The pharmacy uses the generic names so I probably wouldn’t have noticed it if I had looked anyway. And then it hits me. If both bottles ARE Neurontin, then I’ve just inadvertantly taken Samuel off his seizure med (Keppra). In fact, he’s been off it for a month with no side effects.

But still, it doesn’t make sense because the medication is the right color, the bottle is the right size and I KNOW that I refilled the Keppra last, not the Neurontin. So, I have a meeting with the pharmacist on Monday. But if it is true that both these bottles are Neurontin, then I just have one word to say…

IRONIC!