Monday, October 3, 2011

Directionally challenged

I am feeling directionally challenged tonight. This is odd for me, because I am proud of my generally very good, very keen sense of direction. But at this moment, as I am sitting on the couch, bundled up and listening to household snoring, I don't know which way is up. Or down.

Today was supposed to be a relatively uneventful day. Will had a regularly scheduled appointment with his physiatrist, a doctor who focuses on Will's cerebral palsy and managing the effects of it. He's the doctor that I turn to for everything with Will, the one who I can't get through an appointment without crying because he takes the time to ask me how I am doing. And waits for an answer, honestly wants to hear it, and doesn't take "fine" for its answer at face value.

We arrived for the appointment and took Will's weight measurement. He started getting crabby. Its like he knows he's at the doctor and that is a place he doesn't want to be. Oma tried to calm him with yogurt, Cheerios and songs. Minimal success for maximum effort. He just wasn't having it.

As we were waiting for the doctor, I noticed that Will had developed a very light red rash on his cheeks, nose and forehead. As I said yesterday, Will's new anti-epileptic medication has some pretty serious side effects... the most serious of which is skin necrosis (skin death). Super. This typically starts as a rash. We have been on high alert for any rash or fever, so the face rash was concerning.

Dr. A came into the room in his typical 'breath of fresh caring air' fashion. I felt the tears well up in my eyes. Something about this doctor makes me a bumbling, sniffling mess. His entrance made Will more cranky. Dr. A didn't seem to notice.

We talked through our concerns about Will's recent slew of seizures. We showed him the rash, and he immediately set us up with a neurology appointment that afternoon. We talked about Will's cranky attitude, about how much of it was Keppra, how much of it was Will asserting himself and trying to get his way, and how important it was that we stay consistent with him. I was doing pretty good with no tears.

But then we started talking about home life, and this is where I lost it.

If you ask me what my biggest flaw is, I would tell you that I have an overwhelming sense of what is fair (the peanut gallery can stay quiet on this one - I am not asking for your opinion on what my biggest flaw is!). I want things fair. I hate favoritism. I like even. Case in point - when I was 4 and my mom was pregnant, someone asked me if I wanted a brother or a sister. I told them I wanted a brother so our family would be two girls and two boys. Thankfully my mom and dad obliged and gave me a brother, otherwise I would have demanded that she have two more children (boys) to even the score.

So when it comes to our home life, I don't usually care to acknowledge that we have a child with special needs, who isn't physically or emotionally capable of doing the same things his brothers can. I want us all to be able to do things together. I only seek out things we can do together. I do my best to have an accessible life, one where Will feels like an equal. One where it doesn't matter that he can't walk or talk. I shy away from things that Will won't enjoy or be able to take part in. Somehow I have made this mental place where I need to figure out how we can do everything together.

Its really tough.

And when Dr. A asked me about how Will's brothers were doing, I grabbed the conveniently placed box of tissues. Tears flowing. I explained to him my difficulty in trying to do everything together, the guilt I felt over taking Luke and Matt to Marbles Children's Museum and Will having a better time at home that day, the stress and embarrassment I feel when we take Will to a place he doesn't like and he proceeds to whine and yell. Dr. A nodded and gave me his knowing smile. Then he told me:

I know this is a rough spot to be in. You have a special son who will always have a special place in your heart. But you also have other children who need you too. And sometimes they might need to have a special adventure that Will won't be able to or maybe want to be a part of. And different is okay. Apart is okay. Its actually good. And if you're out in public and Will starts yelling, let him yell for a bit. He wants his way. He needs to learn that he isn't always going to get it. And parents always think their own kid is yelling like 30 times louder than they actually are.

So once I got past the water works, Dr. A completed his exam on Will. We learned that for height and weight, Will has miraculously gotten himself between the 25th and 50th percentile! He's been eating like a champ and it is starting to show! In a funny sort of way, Dr. A told us that he didn't want Will to get any heavier for his height. This is so ironic because of where we used to be when Will was so skinny and 5th percentile and classified as failure to thrive.

We also learned that Will's hips are getting very tight. We have been noticing that diapering him has gotten more difficult because he can't splay his hips. Dr. A told us that Will will need Botox injections in his hamstrings and hip muscles to loosen things up. Botox injections are quite common for kids with cerebral palsy, but this will be Will's first time. It should really help him loosen his hips and be able to walk.

Dr. A wrote us an order for x-rays of the hips, though, because he wants to make sure that Will's hip tightness actually isn't exacerbated by something called coxa valga. This is a malformation of the hip joint and femur wherein the angle of the femur neck is too high. This isn't uncommon in people who don't do a lot of walking or weight bearing. The treatments vary highly depending on the severity of the malformation. You could do nothing, you could have surgery... but we don't know anything until after the x-rays are read.

I mentioned that I was concerned with the fact that Will hasn't made any developmental gains in more than a year. No new words, no new sounds, no new foods or physical strides. I didn't think we were at the point where Will had plateaued developmentally. This pause in development started right around the time last year when Will's seizures started. Dr. A indicated that this wasn't uncommon when a child has uncontrolled seizures. The hope is that when the seizures are better controlled, development starts back up again.

So unfortunately from a medical perspective, we left Dr. A with more medical questions than we started with. We always leave with some personal and parental piece of mind, though... that's got to be worth something.

We went immediately from Dr. A to the neurology clinic. We met with a resident who insisted on taking Will's full medical history. I really just wanted them to look at his facial rash and see if he was having an allergic reaction. After 20 minutes and a lot of impatience on my part, we got a whole room full of neurologists and neuro nurses. Their collective opinion was that Will's facial rash was not the type of rash that the new medicine would cause. But just to be sure, they wanted some blood work on Will.

From there, Will went to x-ray so that Dr. A can determine if he has coxa valga. And from there Will went to the phlebotomy clinic to have some labs drawn. A single 20 minute appointment turned into a very long day. Couple that with physical therapy this evening, and what you've got right now is a very tired boy. And a very tired couple of adults... who can't help but feeling a little lost.

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