#Microblog Monday

"Mom, why are my legs on backwards?" he asked just after dinner.

I stopped what I was doing and looked at him. "What do you mean your legs are backwards?"

"That's what Daniel asked me. He wanted to know why my legs were backwards." He looked down. "It sort of looks like they are. See?"

"Babe, your legs are not backwards. Your legs are just the way they are supposed to be... What did you say to Daniel after he asked you that?"

"I told him I was born very early and my brain got hurt and that now it takes a little more concentration to get my legs to do what I want them to do."

"That's a really good answer, Jay. What did he say when you told him that?"

"He didn't say anything. It was time for recess anyway. We went to go play basketball." He turned away then, picking up his police car as he started making siren sounds. It was clear our conversation was done.

He didn't say anything more about it the rest of the evening, yet I can't get the moment out of my head...

Sigh.

~~~

Stop by Mel's for more #Microblog Monday posts.

When You Leave the Cave, You Run Into Stupidity

For the longest time, I think we lived somewhat of a hermit life. A lot of that can be attributed to the fact it was just easier to stay in our little cave when we had two, and then three boys in tow, but there were some other factors at play. The big boys' lack of proficiency and stamina with their walkers was one reason. Some lingering sensory issues was another. Jack's tendency to run away was yet another. (I even tried one of those leash things, but he broke it the first time he used it. Sigh.)

Anyway, now that many of the obstacles we faced are easing, we are out and about more and more. Leaving the house is great and freeing and stressful and tiring all rolled into one. I generally come back with a stiff neck and a headache, although I am still usually glad we went on the day's adventure.

I find that the problem is rarely the boys' behavior. They LOVE going places and talking to people. I am incredibly proud of how polite and pleasant they are to everyone they meet.

No, it's not my boys that makes me hold my breath for our entire trip. My muscles ache and my nerves are shot because of other people we encounter along the way. The people who rudely (and loudly) comment to their younger, smaller children that "No, you're waaaaaaay too big to ride in the cart!" as we pass. Clearly, the comment was in reference to my boys who were sitting in the red, double seated cart. (I love Tar.get's carts!) Or the "What's wrong with him?" comments. Or even the woman who tried to stop me outside of a restaurant to give me her business card because she thought her hyperbaric oxygen chamber would be "just the thing" to help our boys' "funny" walk. (Oh. yes. she. did. Again, this was said within earshot of my boys. AS IF we would follow the information given to us by some random stranger on the street, even. Let's just say I was not nice to her.)

Do they think we aren't doing enough? That they have the quick fix to solve all of our problems and we are too inept to find the answers on our own?

Why anyone, especially someone who doesn't even know us, feels he or she should actually open his/her mouth to suggest anything unsolicited blows my mind. Yet it is happening more and more.

I would never go out of my way to say anything that could be received negatively by someone else. I am certainly not doling out parenting advice (as if I have all the answers anyway) or commenting on things that are not my business. What would either of those things do other than cause hurt?

For the life of me, I just can't understand the mentality that seems to prevail right now. People seem to think that they can and should tell us (and others) whatever crosses their minds. I guess I can see why people would be freer to say stupid things on the internet with the anonymity, lack of proximity thing, but to do it in real life? To people you don't know?

Why does what we do matter to anyone else anyway? We aren't loud or distracting or anything else. We are just out minding our own business.

All we are is slightly different.

I can't help but feel we're being judged because of it. What we do/how we look is judged.
People don't know how to handle differences; they're afraid of them. I know that. Do our differences give people the perceived right to judge us? I don't know. But I do know people show their ignorance in their words and behavior. Often.

Do people know they cause hurt when they say critical things to strangers? Do they care?

Probably not, I guess, otherwise they'd say nothing.

Why don't they care?

It does bug me that the few can so easily sour my mood or make me think twice about doing something before heading out. I hate that their rudeness affects me and our family like this.

Sigh.

I know I should just grow a thicker skin and not let it get to me. I'm trying, really I am.

~~~

Thankfully this behavior isn't shared by everyone. There are many more people who embrace our family with conversation and smiles. People who remember us and pick up conversations right up from where they last left off. People who fight for our (and our boys') happiness. I am so grateful for these people!

The Boys' Appointment in a Nut Shell

Today was one really long day at Shriner's. In fact, we were gone from the house a total of twelve hours. We are all wiped. I feel like it was a really productive day (with some good and bad in the mix), which hasn't happened in a long time. Is.aac and I also really like the doctor we saw today. She was knowledgeable and actually talked to us about our insights and goals for the appointment.

The good:

Both boys were x-rayed and assessed. We also received two different assistant devices right there on the spot. It is so nice to have that over and done without having to wrestle with insurance/scheduling. I have to say that this kind of ease when performing necessary scans and orthotics supplies is exactly how the medical world should work.

Ja.son is doing everything he needs to be doing. His AFO's are good. His walker is good. His x-rays looked great. For now, we need to continue his stretching and keep on keeping on. Excellent! He goes back in 6 months for follow-up.

The bad:

Sh.awn was sent on his merry way with both knee immobilizer braces (They do just what you'd think--keep you from bending your knees. Doesn't that sound like fun?) and a hip pillow for sleep (I can already tell you the pillow this isn't going to fly).

We saw PT and were given some targeted exercises to do with him three to four times a day every day.

He'll also likely need Botox injections to relax a few key muscles in his legs. (That would be done at our local orthopedist as Shriner's doesn't do Botox any more.)

The ugly:

Sh.awn's x-rays did not look as good as we had hoped, and has been diagnosed with bilateral hip dysplasia. My understanding of it (without me having done any research, so keep that in mind) is that Sh.awn's hip joint is approximately 30% out of normal alignment. (In other words, his joint is only 50% in the socket, when normal would be 80% or more in the socket.) This could be the way he's been for quite some time, which is what I believe because nothing significant has changed in his flexibility/movement, or it could be something that is rapidly changing which would mean we would likely need to surgically intervene.

So what does that mean? Well, if at any time his joint falls to 35% (or below) in the socket, surgery would be necessary soon. If not treated, the hip could become dislocated resulting in pain and arthritis. It is also harder to correct should the hip joint dislocate.

If it stays where it's at, there is still a strong possibility of surgery sometime between 8-10 years old. (There are differing theories on this but the doctor we saw believed it is more beneficial to be proactive and treat before dislocation is eminent.) The part that freaks me the fuck out, though, is that the recovery period is very extensive--it could take up to a YEAR to make it back to baseline in mobility.

A year. Just typing that makes my heart hurt.

We are going to try a couple of different stretches and the torture devices braces/pillow to see if we can correct (not likely) or stave off surgery for a long time to come (if ever). We go back in three months for Sh.awn to get reassessed and have more x-rays taken for comparison. We'll know more about whether this is a rapid decline or a slower decline then.

~~~

There is also the whole insurance thing to figure out as well. I tried to get authorizations for Shriner's, but my insurance company would only refer us to the Children's Hospital. Shriner's knew that going in to the appointment. I was told they'd still try to bill our insurance, but they'd absorb the cost should our insurance refuse to pay. (We are all assuming they won't because they didn't "authorize" us to go, but they're trying anyway.)

Sh.awn has an appointment for follow-up in November. Ja.son's follow-up is set for January. So the intent to continue with Shriner's is there. But, I'm not yet sure how it will work should we continue to go back to Shriner's as far as insurance goes. That's a discussion for another day, I decided. My brain was fried and the boys were fried; after ten hours, it was time to leave.

Now I'm off to go eat chocolate--Reece's minis to be exact.

More

It started off innocently enough. We had just started out on a thirty minute drive on our way to the boys' swimming therapy.

"Mommy, look! That man has canes!"

Sure enough, he did. He's a neighbor, who lives a few streets over from us. We've passed him many times before, but today it finally clicked in his head.

"Why does he have canes?"

I thought about it for a few seconds before I answered simply that it was because he used them to walk.

"Why?"

"I'm not sure why he needs the canes to help him walk, kiddo. I think it's pretty cool that he is walking with them, though. Don't you think?"

"Uh, yeah..." he said. Then he added, "Why do I need a walker to walk?"

There it was.* I don't know why I am always so unprepared for this type of question. It isn't like I shouldn't know they are coming my way. But to be honest, he has never really asked me why he doesn't walk. He doesn't see anything wrong with not walking without his walker, I do know that. For him this is normal even though he knows other kids do walk without walkers. (Hello, he has the constant reminder of Jack to help with that.)

Both boys know they have CP and have a vague sense of what that means. I've told them about being born premature (although Ja.son does NOT like talking about how he was sick and in the hospital for a long time. He wants to talk about his life once he was home) and their rough beginning.

Still neither has ever asked for more about the differences, namely their lack of walking.

The plan has always been to follow their lead on things. We'd wait to really talk about CP and its implications for their lives when they wanted more.

Today was a day for wanting more.

More they got.

I hope I did it justice.

~~~

*Why don't they ask these questions of their father?!