March of Dimes

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LUCKY LUKE

Page's7

March 2010

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AND WE WAIT SOME MORE

Mar 17, 2010 03:59pm (EST)

The good thing- well, better than good- is that the really "scary" stuff we were concerned about was ruled out. Phew.

However, because this family doesn't do mundane illnesses, it's still a mystery. There's nothing typical or classical about how this whatever-it-is is presenting. The x-ray showed small changes, but nothing they can pin down or even call all that abnormal.

There's no doubt or question that there's something going on with that foot. Autoimmune? Arthritis? They just don't know and can't tell us which direction we need to move in until the new batch of blood tests are back. She's to be on IBU 3 times a day for two weeks, she was casted for an orthodic insert for her shoe- which won't be back for at least a couple weeks, and see the doctor back in a month, unless test results dictate that we need to go back sooner.

I know this is probably small potatoes, but I am really, really tired of potatoes.

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THE WAITING

Mar 16, 2010 06:52pm (EST)

And waiting, and waiting. The doctor appointment has me a little more nervous than I was before. I fully expected to go and have my nerves calmed and my fears all but dismissed. That didn't happen. In fact, it turns out my fears aren't that illogical. He felt the nodes I was concerned about, he looked at the toe and noted the changes. He listened to all the symptoms and ordered a lot of blood tests. Even more than I was thinking of. He also did a throat culture to test for bacteria other than strep, and because of the size of her tonsils, paired with the fact that she's got some minor sleep apnea, gave us a referral to ENT.

The blood work is looking for just about everything. He is checking for mono as well, even though she's already had it. Again, he said it would be very unlikely, but there's a chance that her body didn't retain enough antibody to it (either EBV or CMV) and she wasn't able to fight it off again. If that's the answer... i'll just be so relieved.

If there is *something* there, he'll call me tomorrow. If all the bloodwork is coming back okay, he said he would wait until the mono tests come back to call which may be Thursday or Friday. So basically, no news is good news. But it's still killing me.

We see orthopedics tomorrow, she'll get xrays and we'll see what they have to say. For now, I just wait with my shoe-resistant umbrella.

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MAYBE A LITTLE.

Mar 16, 2010 07:01am (EST)

Okay, so I *am* freaking out a bit about this whole Gracie thing. The more I think about it, the more I freak myself out. She has been complaining about being tired, having a sore throat, her glands have been swollen on and off for about a month now. I've taken her in for 2 strep tests and both were negative.

This morning, she was pale and so so tired. She said her throat hurts and her neck (read glands). I felt her glands and they are swollen as they get when she's having a "flare up". But there was also something I hadn't felt before. Another gland, smaller and hard, not soft and movable as the other swollen glands.

I'm just praying that I'm being insane. I really am. But I called for an appointment with our family med. doctor and requesting that he get a full blood work up, including uric acid levels. I think we have enough of a raport that he'll be more than willing to comply. If nothing else, I'll beg him to do it for my sanity.

I just needed to come here and freak out, because it doesn't make sense for me to freak out anywhere else.

Thanks

By the way, the appointment I scheduled is for today, have to leave in a few minutes, in fact, so i'll be updating soon, I hope.

020

Posted by Page's7 | Comments: (6) | Permalink

OH, THAT MOM. YES, THAT MOM IS CRAZY.

Mar 15, 2010 07:51am (EST)

I knew better, and yet I did it anyway. I looked and looked and looked at Grace's ailing toe/foot again yesterday, and my suspicion is gout. I've seen gout. It looks a lot like gout. But. A 10 year old with gout? Really? Does this happen?

So I did it. I looked online. Never a good idea for me. Never. But, well, Wednesday is still a couple days away!

There's not a wealth of information about gout in relation to children-- at least not that I can find. What I did find- most wasn't nice. I saw words like kidney disease, diabetes, but the one that popped up most often in relation to children was leukemia. Yes, yes. There were also a few mentions of things that were NOT so scary. Like food allergies, lead poisoning, genetic disorders, bad eating habits and not enough exercise. Well, Grace is probably my best fruit and veggie eater and she's really pretty active, so I don't know.

Maybe just the injury a year ago. Maybe it just snuck in there somehow. Maybe the uric acid levels in her blood are high for some other, perfectly harmless reason. Maybe the lumps (which I find out, in more advanced cases of gout are called tophi) are just nothing.

Perhaps, she doesn't even have gout, but some other something like arthritis, or joint or tissue damage from something else altogether.

No. I'm not freaking out. I've got medicine for that.

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STRESS SHORTAGE

Mar 13, 2010 02:20pm (EST)

Is anyone having one? Because I've got some I could spare.

Okay, I didn't feel the need to talk about this before. At least I don't think I have, but I guess it's entirely possible that did.

Anyhoo. Grace has been dealing with an issue with her big toe for nearly a year now. I believe it started with an injury, but never has healed. It's her right big toe. A toe? Not really at the top of a worry list. They took x-rays when I took her in the first time- about 6 weeks after the injury. It didn't appear to be healing. The films didn't show anything of concern. It's gotten better and worse, better and worse. I took her in a few weeks ago because it just didn't look right and was causing some pain. He told her it was still sprained and gave her a shoe to wear. The shoe actually made it worse, and we were referred to orthopedics. That's fine. We know the ortho dept. well between her and Luke. Well, that was scheduled for the end of April. In the last week or so, it's been very painful for her and swollen, and a little funny colored sometimes. And last week, we noticed a small hard lump on the top of the toe, near the joint. It's not on a tendon, that I can tell, and feels as though it may be on the bone. I've been keeping an eye on it, and it's gotten slightly larger. I've just been thinking "cyst". Okay. I called and got her an earlier appointment. Yesterday, she complained about it hurting worse than ever. I looked at it again, and now there is another lump. This one on the side of the toe, again near the joint. Whatever it is, it's not right. And looking at and feeling the lumps... Well, even though it's just a toe and even though it's probably just cysts of some sort... It's got me thinking some scary thoughts.

The appointment is Wednesday and it seems a little far away.

Posted by Page's7 | Comments: (3) | Permalink

MORE OF THE SAME

Mar 12, 2010 03:04pm (EST)

So, I have today off because there is no school today and the kids older sister is watching them. Knowing this, and that my husband is also has fridays off school and he doesn't work when the kids don't have school, we decided to go out last night.

Let me just say that those of you who were at SU 2009 ain't seen nothin like last night. Ug. While I had a ton of much needed fun and got to let loose a bit

, this morning was a grim reminder of why I don't drink like that anymore.

Nora was up not-too-early this morning with complaints of tummy pain. I just don't know what's going on with that kid. She has had a couple of episodes of diarrhea-like issues... I really don't know. She's been pretty regular in the bathroom department lately. Starting to potty train does wonders for bowel habits.

I was thinking that maybe "hurts" is the feeling she uses to describe a full bladder, so I started to put her on the potty when she complains about it. Haven't seen a whole lot of results with that.

Either way, here we are with tummy hurts. It brings up all those "shoe drop" feelings that come along with prematurity. Something that surprises me now, because I really haven't thought about that with her for quite some time. I don't like it one bit.

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SLEEP-LESS

Mar 11, 2010 08:13am (EST)

What is the deal? I'm thinking it's not normal for a 2yr old to be awake from 12:30am to 5am and then up at 6 for the day. Seriously.

The night before last, she'd slept better than she had for awhile, and had only been complaining a little bit about "tummy hurts". So when the doctor called to check on her, I didn't have much to tell him.

So now today with barely 4 hours of sleep, she's complaining almost nonstop about tummy pain, and she's cranky, cranky, cranky. The other kids weren't here for more than 2 minutes this morning before the little girl was crying because Nora wouldn't let her touch anything.

We're both just so tired.

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A LIL BIT O' CRAZY

Mar 10, 2010 08:49am (EST)

Let me start off right away by saying that I absolutely love the kids I've been babysitting. I do. I truly, truly do. And the kids themselves are not what this entry is about.

That said, as long as I can remember, I've wanted to be a mom. And also about as long as I can remember, I've always thought those people who run home daycare centers were a little bit nuts. Don't get me wrong, I'm incredibly impressed and grateful that there are people with the heart to do it, and do it well. But I never thought it was something I'd ever *really* enjoy doing. It turns out, I was right.

I have learned in the last couple of weeks that I am NOT cut out for this. It's been incredibly difficult for me to adjust to all this. Perhaps it would be different if they were related... I don't know. Another thing is that I believe the 5 year old NEEDS to be in a preschool program. I am not a preschool program. I feel like he's quite a way behind where he should be for someone who is starting kindergarten in the fall. I may be a little more sensitive to that than most, though, so I'm not sure if that's accurate. I think he's bored without other kids to play with and in a house that has a sort of loose structure as opposed to the school-type structure I think he needs. And really... I can only do so many crafts a day.

Four days a week seems so daunting, and the time seems to just crawl at a snail's pace most days.

I miss my quality time with Nora as well. Actually, I think that may be one of the main reasons this has all been so hard. I really, really miss our one on one time.

It's been hard for her, too. Plus, she hasn't been feeling well lately.

She's been running a temp on and off for the last couple of weeks, and has been complaining of her tummy hurting and various other pains. She gets tired easily and isn't sleeping well at night. She's been SOOO cranky. I took her back to the doctor on Monday. They did a urine culture (via cath

) and some blood work. Everything came back pretty normal, so we're not sure what's going on. He mentioned maybe doing a chest x-ray if she doesn't improve. I'm a little confused as to why she needs one if her lungs sound clear and she's satting at 100%. I think he's just grasping at straws. His theory right now is that she's just had a series of viruses. Her ear has also looked red for the last couple of weeks, but not really infected. He gave a prescription for numbing drops if she needs them. It's frustrating, but it doesn't seem to be getting worse, so I'll take that.

Thanks for letting me get some of that off my chest.

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SORTING

Mar 05, 2010 10:22pm (EST)

I'm finding myself in a kind of fuzzy, ugly place right now. I don't like it, but if I write about it here, hopefully it'll help sort out all the junk in my head. So thanks for bearing with me.

Luke's crutches came in today. He was excited about the color and that they were here when he got home from school. But as he slipped them onto his forearms and took a couple steps, the first thing he said was, "Well, I guess I better get even more used to having to ignore it when people call me _____." (the name of the other boy in his grade that has cp and uses crutches) Ugh. It kills me.

Other than all that, he seems to be okay with using them, and understands that they can help him. It was nice to see him standing in one place without the constant shifting of his feet to keep himself from falling. I think he gets it. I just wish he didn't have to.

In other news, I disenrolled from the drug study I was in. I actually haven't even started taking it, so it wasn't a big deal. The funny thing is, the drug scares me. Taking anything like that scares me. Hmm... Let's see... Someone with anxiety is afraid to take the very medication that could help with anxiety? Go figure!

I'll get there. Maybe.

Also, the weightloss thing? I've dropped maybe a couple of pounds, but I got somewhat distracted from my goals recently. I'm getting back to it now though. It's a matter of organizing my time. "Uses time wisely" was always a weak point on my report card. I guess that should be a goal. Heh heh.

Another thing. There are pregnant women and new borns everywhere. I swear 90% of the women in my state are pregnant and they're all having boys. That's all I really need to say about that.

Well, these things are all I can get out of the swirling mess in my head. I just need a big ol' group hug from my Share Family, that's all.

Love

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QUIET SUCCESS

Mar 03, 2010 10:06am (EST)

Luke's annual IEP meeting was yesterday. Since he's had an IFSP/IEP since before his first birthday, the meetings don't bother me anymore. I'm comfortable knowing that I know all our rights, and I know how to ask for and get what we think he needs and all that. It's mostly pretty simple with him.

This meeting was slightly different because there were a couple of people from the intermediate school there. We had a lot of talk about transitioning. Our elementary school goes through 3rd grade, then intermediate is 4th and 5th. I'm sure the transition will be pretty smooth, but it struck me (and my dh and Luke's classroom teacher) as funny how worked up the special ed teachers were getting. The thing is- of course with only good intentions- the "resource teachers" always seem to make Luke a little more disabled than he actually is. We were talking about state testing and how he gets pulled out for those because he needs to be able to get up somtimes and move around without distracting others. Well, that's all fine. He needs that. But they were saying that next year, they won't be on the computer, but they have bubble sheets to fill out. The two resource teachers were going on and on about how they can have a para in place to fill in the bubbles for him. WHAT???

His classroom teacher, my husband and I must have all had the same looks on our faces! All at once we said, "I don't think he needs that." His teacher was adament that he could do that on his own, and I totally agree. That's pretty silly. His teacher- Mrs. H. said that she would be more confident in his skills to do that himself than she would be for about half the rest of the class.

Also, Luke has a para in the classroom for about 30 minutes a day to give him extra help. I forgot about that. He really doesn't need that either. In fact, Mrs. H. actually restructured her day to make sure that they were doing group activities during the time she comes in, just because she didn't want Luke getting help with things he really could do himself. That might sound harsh or against the rules to some, but I completely understand where she's coming from. See, if Luke knows he's got someone who's going to help him with something, he'll take full advantage of that. What kid wouldn't? But it's only teaching him dependency and bad habits.

There are ZERO academic concerns with Luke. That alone is amazing to me. He's at the top of his class for reading- (above 7th grade level) and though he sometimes struggles with math concepts when they are first introduced, once he gets it, he gets it.

We learned yesterday that Luke has best friends. Friends that he plays with every day. Friends that he eats with, goofs around with, sits by in music class, etc. Now, I KNEW he had "friends" and he would name two boys when asked about recess. The thing is, he doesn't ever talk about them. He doesn't ask to have them over, or talk about what they may have played without some prompting. He even mentioned the other day that he would call one of these boys his best friend. But I automatically figured that meant that he plays with this boy most often. I didn't actually think that it could mean that he had a "best friend". I sound insane, I know. So his teachers were all saying that Luke and this other boy stick together like glue and are so good for eachother. This other boy has issues too, but I'm not sure what. There's also another friend who has actually called the house to speak to Luke a couple of times in the last year, but again... I didn't think much of it. Luke is just one of those kids that leaves school at school. It's like pulling teeth to get him to talk about anything or anyone. (about school, that is- any other time it's like pulling teeth getting him to STOP talking!

)

I'm thinking a playdate is in our near future. It would be great to have another little boy running around here doing boy things with Luke.

Considering that his sisters just tricked him into letting them put make-up on him by telling him they were making him look like a star wars character-

Man, was he mad! Then he decided it was funny and put a couple of balloons in his shirt.

Yep. Another boy to play would be good.

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