Thursday, July 23, 2009

I love this picture


It's from our neice Lauren's wedding, Anna was the flower girl (if you click on it you can see it bigger).

"sturdy tricks"

We were playing Uno and Seth kept giving Anna draw twos so she got upset and said that Seth was doing "sturdy tricks" to her. I tried not to laugh because she was really sad, complete with the big, fat tears, but I had to giggle.

Saturday, July 11, 2009

Bone scan and head staples

Seth had a bone density test a couple weeks ago-it showed he has osteopenia, which means his bones are weak, but it's not as advanced as osteoporosis. It's measured by a z-score, and his was -1.5, so they're not super fragile or anything, but still something we'll have to keep an eye on. Especially once he starts the deflazacort, because that can cause osteoporosis as well. Dr. Chadehumbe already did some blood work on his vitamin D levels, I haven't yet seen what the results of that were, but I'm sure she'll be putting him on some supplements to help his bones. Then she has his levels checked and bone scans done periodically, too. A lot of DMD boys have bone weakness-in fact, I was talking to a mom last week, and that's how her son was diagnosed-he kept breaking bones, which led to the eventual diagnosis.

As for the head staples...I wasn't there (and Chappie wasn't in the room) so we're just going on what Seth has told us, but he was at physical therapy and she was having him do some activity that involved him standing on a balance board and then they had to do something with a ball on a string and they each had some thing they had to open and close, so she wasn't standing right next to him and he lost his balance and fell back and hit the back 0f his head on a table. He went to the ER and they put 5 staples in it. That was a little traumatic, but it's not bothering him at all now, and he'll be able to get them out in ten days. I asked him if he wanted to see them and he said no.

I understand accidents happen, but how could she not know the kid doesn't have good balance? If you did five minutes of research on the disease, especially if you wanted to know how that would affect how you treated him, you would know that these kids don't have great balance. You would think you would want to practice on the balance board a few times rather than leaving him on it alone at his third session. PLUS, nobody called from that office to see how he was doing, or apologize, or anything. I know that they can just go on the hospital system and see what they ended up doing at the ER, but somebody still should have called. Don't you think? Are they so worried about a lawsuit that the PT can't even call and say she's sorry? Heaven forbid anybody take the blame for anything.

Friday, July 03, 2009

Some recent pictures

Goofy

More goofies



MICHIGAN'S ADVENTURE!!!




Seth on the carousel at Michigan's Adventure-mad because he didn't realize his frog didn't go up and down.





Anna's horse went up and down, so she's all smiles.



I don't know where they got this basket thingie from but they like to wear it on their heads. It cracks me up every time.



Tuesday, June 30, 2009

Would you want to know?

In Wales, they test newborns for a variety of genetic diseases, including MD. I was reading an article by a lady who had it done and her son was shown to have DMD. She was upset that they weren't given more information beforehand to make a more informed decision, and ultimately, she said she wishes she hadn't known that he had this disease so soon. She said that she never got to fully enjoy her son because they had the diagnosis hanging over their heads.

I can see what she's saying. While I would have liked to have known maybe two years earlier (just to have started treatments sooner), at least we had 7 years of blissful ingorance. Because once you know, it DOES overshadow everything. I don't think I would have wanted to know right away-BUT on the other hand, I don't think I would feel the same way if my second child had been a boy who also had DMD. At least if you have the knowledge before you have any more children, you can make the choice to have more, or to try other methods that would make another child with DMD less of a possibility. (Of course, none of this is to say I wish we didn't have Seth-that's not at all how I feel or my point-but I think you probably know that). But we probably wouldn't have had the means to do those other methods and may have just chosen not to have any more, and then we wouldn't have Anna, and that is unthinkable.

Another woman commented on that original article and said that she misses the days before they knew. She said that the kids have had happiness since the diagnosis, but she and her husband had not. They had NO happiness. Which is sad. I hope that I don't look back and say that. Obviously I will never be happy with the situation, but I hope that we can still find happiness in our lives.

Saturday, June 27, 2009

Frustration

So we have to get this bloodwork done to determine where the mutation on Seth's gene is, plus she wants to check a bunch of other levels that have to be monitored once he starts the deflazacourt. It's been two weeks and the insurance company still has not authorized it. I called yesterday and after being put on hold three times the lady said that all she could say was that it was received and that it was in process. When I asked her why it took so long, she said (rather snippily, I might add), "that's the process."

I honestly don't understand what the hold up is. Like the doctor said, the old way-a muscle biopsy-is way more expensive. You have to get an anesthesiologist and a surgeon and it's a much bigger deal. I understand that it's a more complicated blood test and has to be done at a university in Georgia, but it's still cheaper than a muscle biopsy. There is another family I've been talking to who live in the area whose son was diagnosed last year and they are STILL waiting for their insurance company to pay for the test-they didn't do a pre-authorization on it. Their insurance company is claiming it's a non-essential test. A genetic test is not essential in helping diagnose a genetic disease? Since when???

I was thinking yesterday that I should probably get used to this waiting game when it comes to insurance. And I am so grateful that we HAVE insurance, and it's pretty good insurance, too. I'm just really frustrated with this "process." We can't start the meds till we get the results of those other levels. I suppose we could do it separately but then Seth would have to endure TWO blood draws, and if we don't have to do that, I'd rather not. He had one and it didn't go too terribly but it did hurt and he wasn't a big fan of the whole thing...and I guess two weeks won't make that big of a difference in regards to starting the meds, but I just want to get it going!

Wednesday, June 24, 2009

Today's appointments

Everything went well. They did an EKG and echo of his heart and they looked good. So basically we have to go back in a year to make sure there were no changes.

We also had another appointment with the neurologist, Dr. Chadehumbe. The appointment was originally to go over the bloodwork (to check various things and most importantly to find out where on the gene the mutation is) but we are still waiting for our insurance to even approve it so we can get it done, but she said we could still come in because we had a lot of questions. We discussed steroid therapy, which we will probably do. We are going to use deflazacourt-it's not approved in the U.S., basically because DMD is relatively rare and there is not a lot of money in that particular med. We chose it because it has far fewer and less severe side effects than prednisone-most notably weight gain, which we don't want because the heavier he is, the more his muscles have to haul around. There are still side effects, including osteoporosis and cataracts, but his bones will be monitored with bloodwork to check vitamin D levels and bone scans will be done periodically (he is actually getting his first one next week). The studies showed that even though most boys got cataracts, they were almost always small and did not interfere with vision at all.

I am so glad Dr. Chadahumbe chose to come to Grand Rapids-she worked with Dr. Wong at Cincinnati Children's, who is one of the top doctors in the field. A lot of people bring their kids from all over (including here) to see Dr. Wong-they see 400-500 boys at that clinic. As Dr. C was saying today, the training most neurologists get is very limited on DMD-but she got lots of experience in Cincinnati and really keeps up with the latest research and treatments. So I feel like we're getting the benefit of 400-500 patients of experience, but with a personal touch.

It was weird-on the way there we saw some firefighters out with boots (to collect money in), but we just thought they were collecting for their station or whatever. On the way back I actually saw the signs-they were actually collecting for the MDA! So we had to stop and give some money. Which we will probably get back in some form. :)

Tuesday, June 16, 2009

A little light

Anna was so cute last night. I got some new scrubs and was trying them and showed her and she said, "Mommy, you look BEAUTIFUL. I knew you would look pretty in that!" I think I'll keep her-she's good for the old self esteem. :)

Appointments

I know this will probably slow down but the amount of appointments we have is a little overwhelming right now. This week he just had his initial PT eval-she gave us some stretches and we're going to get started on orthotics for his shoes (his arches roll in and his feet start to hurt) and night splints for his legs to stretch him while he sleeps.

Next week however-he has four appointments. Neurology, cardiology (just a baseline, but I'm still a little nervous and hope everything is looking good), PT, and fitting for the orthotics/splints. I would guess he's going to start to wonder why all the appointments? For the most part he's a go with the flow kid and he knows it's for his muscles and that he has issues with them, so maybe not. We're just playing that part by ear. We don't really want to overwhelm him, you know? I'll keep you posted on how the appointments go.

Saturday, June 13, 2009

Diagnosis

I was just looking back through these posts and realized that I had posted a few years ago about how I feared once Seth started school he would notice how much behind he was other kids, or hopefully start to catch up. Well he didn't, and now we finally know why-he has Duchenne's muscular dystrophy. Even typing that seems so weird...I know it's true (I guess nothing is written in stone till the bloodwork comes back but it's a pretty classic case) but I just can't wrap my brain around it. I suppose that's not something that happens overnight.

It just seems so unreal because I honestly didn't even have a clue. We brought him to an orthopedic specialist last week Thursday because he was just still so stiff and still not up to speed. She wanted to do a blood test to rule out MD-I read her dictation from the visit and she honestly was leaning toward cerebral palsy-both of which were surprising to us since we just thought he had stiff muscles, you know? So when his bloodwork came back and showed pretty definitely it was MD, it was a total shock. I did what people do in the computer age-I googled my ass off and it all kept coming back to Duchenne's-the most common and I think the most debilitating with the shortest life expectancy. I didn't want to believe it, but I knew it was true.

So anyway, then we went to the neurologist-she wasn't there at first so the NP was doing all the stuff they need to do and as the visit progressed I could see her face getting more and more serious and the dread in the pit of my stomach just got deeper and deeper. Then the neurologist came (she had been on call at the hospital) and all of a sudden there are three medical professionals in the room, all sitting there with these grave looks on their faces. So in the space of about a week we went from thinking that he just had some muscle stiffness to knowing that he has this horrible disease that is going to kill him. Not tomorrow, but someday, and along the way we will have to watch him slowly deteriorate. How do you even begin to deal with that?

I was just thinking today that as mothers we do so much to protect our kids. We strap them into their five point harnesses, slather them with sunscreen, make them wear bike helmets, try to get them to eat some decent food, etc. But what do you do when it's his own body that is the thing that is going to do him the most harm?

Thursday, May 29, 2008


I am posting for the record that Seth and Anna were once best friends. They've been fighting a lot lately and I hope it's a phase...that ends sometime before they're adults.

I'm baaackkk

I don't think any of you are even still checking in, but I was thinking the other day that the kids do and say so much stuff that I want to remember, and really, who has time to write it down, so maybe if I type it, I'll do it? We'll see. I would think I could make a few minutes each week...

This is the one that made me think of it-when were playing war and Seth won one of our good cards and Anna said, "balls!" I don't know where she gets this stuff. Balls are my reason to start blogging again...crazy.

Friday, September 29, 2006

Friday rants

  1. Graham cracker packaging. WTF? It's impossible to get into the damn things without breaking half of them and/or covering your kitchen with crumbs. There has to be a better way.
  2. The post office. Why could I get my People on Friday in Michigan, but not in North Carolina? I know it's not "late", but I'm used to getting my useless news on FRIDAY, and Saturday, or Monday, or even Tuesday is just not acceptable to me.
  3. People that think way ahead. I went to the movie store this morning, hoping to avoid the weekend rush and secure a copy of Curious George for the kids to watch. First of all, they only had 8 copies, and secondly, they were ALL GONE. Gone!
  4. The movie store. Not just for only having 8 copies of a new kid's release, but for their bullshit "two day rental." I got a movie at 11:30, and it has to be back by noon tomorrow. That is precisely 24.5 hours. NOT two days. I don't CARE if those 24.5 hours are in two separate days. It's NOT two days.
  5. Stupid NickJr. If you're going to have a new episode of a show for the first time in forever, why the hell are you advertising it for a month beforehand? KIDS DON'T GET IT WHEN YOU SAY "OCTOBER 9." They want to see the Backyardigans in the rocket ship like yesterday. I don't know what purpose this early advertising serves, except to make parents insane.
  6. Kids's networks in general. Get with the program. REAL TV shows have a whole season of new shows, and then they take a break in the summer and show reruns. This new show every 6 months is annoying, and yet you advertise it like we should throw a damn party. MAKE MORE NEW SHOWS. (no I don't let my kids watch tv all the time, BUT there are certain shows they like, but they are always reruns. Not that they really care.)
  7. This TJ Maxx. Now, I LOVE the Maxx. But I hate how the aisles are so narrow and stuffed with crap that you can't get a cart down them. Why have carts if I can't fit them down the aisles? I mean, I know the place is just chock full of super bargains, but get somebody to organize your layout or something, people.

Friday, September 22, 2006

Resistance is futile

When my kids were born, I was sort of anti-kids' music. I don't think it matters when they're really little, and then as Seth got bigger, I noticed he liked Barenaked Ladies, then the Beatles, and other "real" music. I mean, sure, we sang the songs ourselves, but I couldn't stand the CDs where kids sang, or even worse, when they use *that lady* with the really cloying voice. You know *that lady*, right? It might be different people, but they all have that certain kind of voice.

Well. Let me tell you. I listened to a veggie tales CD TWO TIMES today. And we have this other one with all those nursery rhyme songs on it sung by *that lady* AND kids...of course the kids love it. I'll look back and see them both slack jawed, soaking it all in. It's like I've deprived them of this vital nourishment their whole lives, and now they're making up for the lack. And of course it can't be Laurie Berkener that gives them this response, because I actually enjoy her music...it has to be the most annoying kind of kids' music in existence.

Of course I put it on. Anna has gotten particularly demanding in the car lately, and I have the choice to either lose my ever loving mind from her screaming, or from the horrible music. Since the music doesn't make me want to jump out of the moving vehicle, I'm going with that.

I know this is just the beginning. In a few short years they will be harassing me to put in whatever it is kids are going to be listening to then. I can't wait!!!

Wednesday, September 20, 2006

Tootsies



Anna wanted "pretty toes" so here they are. I don't care if I steered her toward it, I'm glad pink and purple are her favorite colors, that she likes her toes painted, and her current favorite toy is a pink stuffed pegasus with a purple and silver mane.

In my defense, she also likes to run and get dirty and isn't afraid to smack her brother when he gets in her face. (of course she gets time outs for it, but I'm secretly glad she fights back)

Tuesday, September 19, 2006

SUPER EXTREME MEGA HUMONGOUS!

You know the trend to be bigger and better has gone too far when your roll of toilet paper doesn't even fit on the dispenser. We have some Charmin super de-duper rolls or whatever they're calling them, and they say "our biggest roll ever!" like it's some big accomplishment to wrap more paper around a cardboard tube. I just want to be able to turn the damn roll and get some tp! Where does it end?

I don't get it

I LOVE the internet. Think it's the best thing EVER. Of course it has it's downfalls, like anything, and I think the biggest one is that it brings the weirdos together. I mean, there were always pedophiles and people who like to be crapped on out there, but before the internet, they kept it low key because they KNEW they were fucked up, right? But now there are communities out there for every damn thing, and the weird and hateful now know that there are OTHER weird and hateful people out there just like them, and now they don't feel so weird anymore. Things that were once frowned upon, and still should be, are becoming more acceptable, and in some cases, even mainstream.

I think it's fine for some things...I mean, if someone WANTS be crapped on and can find someone to be the crapper, well everyone's happy there, right? So whatever. You have your life and I have mine, and if I choose to keep the crap in the toilet, well that's my prerogative.

The thing that gets me the most is the child haters. There are TONS of message boards out there for them, and now it's OKAY to hate kids! I mean, not that it wasn't before, but this is really extreme. Wishing bodily harm and/or death on children? Why is this ok? If someone said the same thing about their DOG, they'd be horrified, but for some reason in their mind it's ok to joke about a kid getting kidnapped or hit by a car.

I get that some people don't want to have kids. I can see why they feel that way! It's not for the faint of heart, that's for sure. Of course (and I know the child free HATE when people say this), they have no idea what they're missing out on, and most of the time the rewards far outweigh the fact that you have to give up your carefree jet-setting lifestyle that the child-free always cite as one of their reasons for not having kids...but whatever. Your choice, I could care less.

And yes, I do know that not all child-free people necessarily hate children or wish them harm. I hope it's a small but vocal minority. I read some of the postings on these message boards and I'm pretty sure that a lot of the people on there that say they told this "breeder" or that "crotchfruit" off are full of shit, too.

So yeah, I don't get it. Apparently these people wish that everyone would stop having kids. Okay. Let's say for a minute that this was possible. Then what? And (another argument I'm sure they hate) who is going to take care of the old and infirm? And I don't mean financially...I'm sure people without kids are especially able to put aside money for the eventuality that they won't be able to take care of themselves, but who is that money going to be paying? It's those people who are kids now, that are going to grow up to be doctors, or nurses, or pharmacists, or even ass wipers at nursing homes.

Whitney Houston may be certifiably insane, but she was right: children ARE our future. And most of us horrible breeders are doing the best we can, and our kids are going to grow up to be responsible citizens. And maybe we can round up all the people that didn't want them to grow up and they can figure out how to take care of themselves without the help of those they now refer to as "demon spawn."

Wednesday, August 30, 2006

Seth starts school in a WEEK!

I'm of course excited, but also nervous. I guess every mom is nervous about that, right? But I feel like I'm MORE nervous.

Today at the park there were some moms there I knew and one I just met, whose daughter is exactly one year (+/- 3 days) younger than Seth. And she is taller than him by like an inch! She's a tall girl, but I hate that. So I hope Seth isn't like the smallest boy in his class. I mean, at all his doctor appointments he's exactly average, has always been in the 50th percentile...so why do all other four year olds (and some three year olds) look HUGE compared to him?

And then there are other things, just things I think he should be doing and I'm not sure if he just doesn't WANT to or can't, and I'm afraid that I'll find out he can't and he is more behind than I think he is, and that makes me feel bad. I know there's always a chance that once he gets around kids his own age (all the people we hang out with have two year olds) that he'll figure it out and get to it...so I'm trying not to be too worried.

This is just my least favorite part about being a parent. I hate the fact that once he goes out into the real world, he's going to get hurt. Not physically, although I DO worry about that, but emotionally. He's sensitive and shy and I just don't want anyone to make him feel like he's not good enough for whatever reason. How do you not beat down other kids (or their parents) who make your kid feel bad? It has to be tough.

Anyway. I think preschool is going to be a good experience for both of us. It'll hopefully help me feel better about where he's at, and hopefully help him gain a little confidence and make some friends his age. So I'm really really trying to not be so nervous.

It's not working.

Tuesday, August 22, 2006

Music

I know I'm getting older in that I find myself not liking much new music and thinking that the music from "my" era was the best. My era was the 90s; the birth of grunge and the aftermath. I remember the first time I saw "Smells Like Teen Spirit" and "Evenflow" on MTV. I was in complete, open mouth awe. THIS was the music I had been waiting for. THESE troubled people were the ones that were speaking for my generation.

But you know, as much as I love the music still, it's hard for me to listen to it. I really have a tendency to heavily associate whatever songs are out with whatever is going on in my life...so almost every single song is all wrapped up in some guy or other. Kind of sad, huh?

Most of the early stuff reminds me of my first boyfriend Eric. All that really angry stuff always brings back those intense feelings of first love gone bad. Alice in Chains especially, because damn, that was angry shit. And I was an angry girl.

And then there are a few songs here and there that will bring back somebody I dated only briefly, and most of these are not great memories either. I can't listen to John Lennon (who I LOVE) because it totally reminds me of this TOTAL PSYCHO I dated. Every single time I hear "Woman" I want to kick myself for ever letting that man within ten feet of me. UGH.

The entire "Before These Crowded Streets" CD reminds me of Chris the volleyball player and that summer we had together. I spent the summer on the beach, watching him play, and then we'd go out down in Saugatuck at night and drink and dance...yeah, those are good memories. Even though I know it would never have worked out permanently with him, that was a fun summer.

And then pretty much everything else reminds me of my husband. This summer, we have known each other ten years. So I was 21 when we met, and I'm 31 now...so basically the great majority of my adult life and the music from those years, all wrapped up in him. Some good, a lot bad...there were so many melancholy times in my life where we were on the outs, and so many songs that bring that back. I have this CD by Counting Crows from when they were on VH1 storytellers, and they are my favorite band and it is a GREAT CD. But it just makes me so sad that I only listen to it if I'm already feeling that way.

Anyway. I'm not sure what the point of this post is, just something I was thinking about today.

Sunday, August 06, 2006

FYI to my cat

First of all, I don't know how you got the impression that I want to pet you at 6 a.m., but I don't. Please wait until my eyes are open and I am moving before you start licking my face, meowing, and purring. It's not cute before sunrise, trust me.

If the kids are up, just hide. You know at some point they're going to chase you, so why do you even bother? Do you wake up each morning thinking, "today is going to be the day when they don't chase me"? While I admire your optimism, they are going to chase you. Every day. Please make a note of it.

The bed does not belong to you. I know this is a tough one, as you sleep on it all day without incident. At night when we get in it, you're going to have to adjust accordingly. Two tall people in a queen size bed do not leave a lot of room for a cat...so don't get pissed and try to maul my foot every time I move. And last night, when you snuck up and were sleeping in the pillows (with your butt dangerously near my face)...let's just see that never happens again, ok?

I promise I will not suck you up in the vacuum. You can still hiss at it and run when I bring it out, but I just want to ease your mind.

If you're going to spend 10 minutes scratching litter after you poop, why don't you try to actually cover the poop instead of spreading cat litter for a three feet radius around the box? Just a suggestion.

And one final thing...making a mad dash for the door when it's open is really a bad idea. I'm pretty sure that's how you ended up at the pound in the first place, and I would like to keep you if at all possible.

Thank you and stay fuzzy.