Lots to report…

We’ve had a busy, fun, trying, scary, exciting, happy, worrisome week.

First off came Ethan’s four year check up. He is now 40 inches tall and weighs 44 pounds. I don’t recall how tall he was last year, but he gained twelve pounds since his three year check up. Twelve. What is it with this kid and twelve pounds? His doctor and I were concerned enough to put a call into his neurologist. The neuro felt that the big gain was alarming enough that he wants to see Ethan soon. We have an appointment scheduled for August 26th. I’m guessing that the neuro will want E to have an MRI done. I want the MRI done. I want to know what, if anything, is going on in E’s brain. I dread the procedure, though. He’ll have to be sedated for it and he’s old enough to be scared and to remember it. He was one at the time of his last MRI and doesn’t remember it. I do, though. It was torture to see him be put to sleep. I can’t imagine how it will be for him when he’s much more aware of what’s going on. Anyhow, I’m trying my best not to freak out.

Tuesday, we took the kids to an amusement park. Not a huge one, but one that can easily be done in a day (or less). Lots of fun stuff for little kids and big kids. Will and Abby were both finally tall enough to go on the good rides and had a blast on the roller coasters. Ethan was in kid heaven with all of the spinning rides. He just kept going and going. Got off one ride, went to the next, then the next, and so on. He was far more daring than I’ve ever seen him and that was just fabulous to watch. He had a huge grin on his face all day long with one exception. He did try one ride that didn’t spin. It went up, up, up, then dropped fast. He giggled all the way up the first time, but as soon as it dropped, he flipped out. It was over quick and he didn’t suffer any lasting trauma from it, but man, he freaked! He’s still talking about it. “I don’t like the up and down ride. It’s scary. I like the boats, and the planes, and the turtles, and the cars. I don’t like the up and down ride.”. It was a really great day and we had perfect weather which is a miracle around here these days.

Then we had a huge first here yesterday. E’s always been a bit (OK, quite a bit) cautious around playgrounds and slides in particular. Yesterday, we went to the playground and the first thing E did was climb up to the big, tall, “dizzy slide” as he calls it, and went down it. By himself. No hand holding or prompting by Mom or Dad. Just did it all by himself. Multiple times. I was (and am still) so proud and just a bit shocked. I’m guessing doing all of the rides the day before had something to do with this bold behavior… Whatever it was, I’ll take it.

Today brought some good news. Back in March, Ethan’s physical therapist (M) was taken off of his case by the agency. It wasn’t anything personal. They were just rearranging her clients to keep them all in the same general area. I understood the reason, but was devastated. She was perfect for E. They have some sort of magical connection that I can’t describe. The new PT (S) is great. Very nice and I like her very much. E does, too. But he just doesn’t work with her the way he did with M. M could get him to do hard work without him even realizing he was doing work at all. The initial transition from M to S was not fun at all. Ethan wouldn’t do anything for S. It was awful for a couple of weeks, then became bearable, then got better, but still not great. I found out today that we will get M back on Ethan’s case at the start of school. I am positively giddy over this news. I knew it was a possibility about 3 weeks ago, but didn’t get the confirmation until today. So, yay!!!

Other random yays for the boy… he now says three (with a perfect th) instead of free. He now says animal instead of aminal, he’s recalling information from stories more and more, he’s drawing people, he’s making shapes. Not perfect by any stretch of the imagination, but beautiful to my eyes.

Welcome to Holland

I came across this essay written by Emily Perl Kingsley sometime last year. It still brings tears to my eyes today as I sort through how I can relate to what she writes.

Welcome to Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Happy Birthday, Buddy!

Four years ago I had no idea what I was in for.

Which was….

Pain. Lots of pain. From the birth to the headaches I get from the constant screeching and chatter that comes from the boy.

Worry. This is the big one. I worry about everything with him. Nosebleeds, fevers, bruises, etc. Not knowing if there’s something bigger causing run-of-the-mill things. Worry about his development. Am I doing enough to help him achieve the goals that have been set for him? How will he do in his new school this fall? I wouldn’t say I worry constantly, but yeah… pretty damn close.

Fear. Another big one. I am terrified of what could come of his NF. Scares the shit out of me.

Now the happy stuff…

Love. So much love. He’s the best snuggler evah.

Joy. Tons of joy. He’s a happy-go-lucky kid even with everything he goes through. He dances and sings like no one is watching. He loves pink and purple and princesses and purses and doesn’t care at all that those are “girl” things. He’s pretty awesome.

Laughter. Such infectious laughter. He lights up a room (when he’s not screaming) and makes people smile and laugh by just being him.

Happy Birthday, Little Buddy! I love you.

Summer is here!

The past couple of weeks have been hectic to say the least. We had Ethan’s full schedule, plus the end of the school year craziness with the other kids. There were field trips, field day, water day, class picnics, and more. Super busy, but so much fun.

Ethan has a week off before starting his new summer schedule. I’m looking forward to the week off, but I’m not 100% sure our summer schedule is going to be the best for him. We’re going to give it a shot and change things around if need be. As it stands now, he’ll have five appointments at home. Two on Monday mornings and three on Wednesdays, two in the morning and one after lunch. Those are the times that just happened to work best for his therapists. One one hand, it gives us three free days a week, but on the other hand, it gives us three free days a week. He’s been managing a five day a week schedule for quite awhile. I think the two day schedule might work out. It’s not like he’ll be sitting around doing nothing on the three days off. I have already restocked the craft supplies, he has his sensory bean bin, bubble wrap, trampoline, therapy ball, swing set, swimming pool, etc. We have a membership to the museum and will likely get one for the zoo. We’ll be hitting playgrounds and hanging out with friends. My hope is that doing lots of other fun stuff will make the scheduled stuff not seem too much like work. And keeping the kids busy will hopefully keep their mother sane.

Advocacy

Ethan’s SEIT told me about a new program they are starting at the agency that all of his services are through. I don’t know all about it yet, but the basic idea is that they are looking for parents to be advocates for families that are new to the world of evaluations and services. I think it’s a wonderful idea. It would have been nice for us when we were just starting off with it all. She said there is some training involved and there would be a small stipend for every time they would use an advocate. She asked me if I would be interested in doing it.

I am interested, but honestly, there are times when I feel like I have no idea what I’m doing. How in the world would I be able to help someone else? I think I can, though. I already tell anyone that will listen about what we’re going through with Ethan. I don’t really know how else to explain it, but I think I am very real when it comes to all this stuff. I know of some parents that are horrified at the thought of their child being classified as learning disabled. I will admit… that one stung a little at first, but it is a good thing. It got him so much support that he wouldn’t have otherwise.

It’s OK to feel like you have no idea what to do next. You may not be an expert in special education or physical, occupational, or speech therapy, but you are an expert on your child. You have to ask questions, you have to sit in on the therapies so you can learn how to adapt at home. If a therapist is doing something that you’re not comfortable with, it’s OK to speak up and try to find a different approach. You have to be involved in the CPSE meetings about your child. Bring a picture of your child so that s/he is not just a name on a piece of paper (that’s something I learned from one of Ethan’s fabulous physical therapists). I was fully prepared to fight for summer services for Ethan at our meeting this past April, but luckily the school district was generous and I didn’t have to insist. From what I understand going from preshool services to school aged services is not as easy, so I’ll have to be prepared for a battle next spring. Most importantly, you have take things a day at a time. You cannot expect an instant change. Ethan has come a long way since starting therapies seven months ago, but it didn’t happen overnight.

I am interested in learning more about this program. I’d love to help other families and as an added bonus, I think I’d learn some things myself.

Labs are normal!

I got the call this afternoon. I’ll be able to sleep to night.

I Hate Waiting

Along with NF1, Ethan has Juvenile Xanthogranuloma (JXG). The two of those combined put him at a higher risk for Juvenile myelomonocytic leukemia (JMML). The chances that he’ll actually develop leukemia are very low still, but we are staying on top of things with routine blood work.

I try not to think about the what-ifs, but sometimes it’s hard not to. I lost a brother to leukemia before I was born and even though it was a different type of leukemia and it’s not a genetic thing, it still scares me to death.

We just got back from the lab. Ethan did so great. One little yelp and no tears. He got a cool bandage and a couple of Spiderman stickers, so all was good in his world. On the drive home, he did tell me “that hurt my arm” and required some snuggles on the couch once we got home. He did announce “I so proud of me!” too.

And now we wait for the results. I’m optimistic. I’m 99% sure everything will be fine. I hate the waiting, though. This is when the what-ifs are the worst.

That’s Your NF

Ethan has never noticed the spots all over his body. Until tonight. While getting him ready for bed, he had his shirt off, and he rested his finger on his chest and said “What’s this?”. I thought he was playing a guess-the-body-part game and I said “That’s your chest!”. He moved his finger, looked down, and pointed right at one of his CALS and asked again “What’s this?”. Sigh. I knew he’d ask eventually, but I was hoping it was going to be later. We’re not trying to hide it from him, but he’ll have a lifetime to carry this burden. He doesn’t need to start now. Luckily, he’s still so young and he won’t get it all for some time. But still…

I just (as happily as I could) told him “That’s your NF.” and he said “My NF? Oh!” as if everyone has an NF.

Sigh.

Preschool Graduation

Ethan had his preschool graduation last week. It was a very bittersweet day for me. My kids are all two years apart in school, so we had two years at the preschool with Will, then two years with Abby, and what I always expected would be two years there with Ethan. Well, Ethan only had one year there. One amazing year. He’ll be onto Universal PreK in the fall at the school Will and Abby go to. The teachers and I had a tearful goodbye last week. They have been so amazing with Ethan this year. The school is a private, mainstream school, but the teachers were so open to E’s extra help and did so much beyond what I could have ever expected. They truly love my little boy and genuinely care about what happens with him.

The graduation ceremony was adorable. The kids sang songs and did the movements with them. Ethan did such a wonderful job. He attended very well and there were only a few times that he used the other kids as models to remember the hand movements. We had a chance to test out his sign language at one point, too. The kids were all supposed to be seated and he was standing there looking at me. I signed “sit” and he sat down immediately. It’s nice to be able to communicate like that with him. My other kids are learning sign language as well.

Here’s Ethan with his proud mom and dad on his big day.

He Even Has Special Feet

Oh joy.

Ethan’s feet are so wide, they are practically square in shape. He’s just fitting into his size 9XW sneakers, and I know it’s time for a new pair. I’d like to get him some sandals for the summer, too.

I just went to the Stride Rite® website to have a look around and printed off the little chart to measure his feet. I plugged the numbers into the boxes for length and width and got this message:

Sorry, we were unable to determine the correct size and width based on the numbers entered. Please check your measurements or visit your nearest Stride Rite location to get fitted.

I guess we’ll take a ride out to the nearest Stride Rite® location, which I would not consider anywhere near our house.

I wonder how much these shoes will cost when I factor in the gas we’ll burn through to get there and back. Good times.