Surgery Scheduled

A few months ago, Grayson’s physical therapist asked if we’d ever had any imaging done on his hips (we hadn’t). She had attended a conference and learned about a surgery that she thought might help him. As you know, Grayson’s spasticity (tightness and stiffness) has progressively gotten worse and worse. It’s very difficult to put him in any kind of sitting position, carry him, and change his diaper because he squeezes his knees together so tightly and stiffens his legs.

We contacted the doctor who our PT had heard at the conference. After doing some online research, I learned he is one of only two doctors in the country who do this surgery, and he’s located less than an hour from us! After reviewing Grayson’s X-ray, he called me for a phone conference and said that Grayson is a candidate for the surgery. We saw him today in clinic and reviewed the procedure and he examined Grayson so he could determine exactly what parts of his legs he can improve/loosen.

Basically, Grayson squeezes his knees together so tightly that it is slowly causing his hips to dislocate. While he isn’t in a great deal of pain because of it right now, if we don’t do anything about it, he will be at some point. The surgery will involve nerve blocks in his groin/hip area to loosen and relax the muscles. He will also have a nerve block in his thighs which hopefully will lessen the extreme stiffness we see especially in the late afternoon. Finally, he will have the procedure on his ankles, which the doctor claims will make his AFOs (ankle foot orthotics- his ankle braces) more comfortable. Right now, G flexes his toes downward in an unnatural/awkward position.

The surgery is called Selective Percutaneous Myofascial Lengthening (SPML). This is the best article I’ve found on the procedure, in case you want to read about it.

Grayson is scheduled for surgery in two weeks. I’m nervous because it’s not at “our” hospital, and I’m always nervous about anesthesia, but I’m also excited about the possibility of seeing some significant improvement in G’s quality of life and our ability to take care of him.

Have any of my Mito friends/readers heard of this surgery or had any experience with it? I found a FB group dedicated to the procedure, but haven’t found anyone with Mito who has had it done.

Sweet boy was an angel waiting for the doctor today

2014 Goals

Thank you all for your comments and support on my last post. Yes, 2013 was a pretty crappy year, but in 3.5 hours it will be over. So, ONWARD.

I’ve been reading a lot of New Years resolutions/goals posts today and have been thinking about my own. The last thing I want to do is create unnecessary stress and anxiety for myself, but I think it’s healthy to have some sort of an idea of the things I want to accomplish this year.

So, for what it’s worth, here are my goals for the coming year:

1. Don’t die.

2. Update and organize my “In Case I Die (or happen to go on vacation)” binder on Grayson’s day-to-day care

3. Go on a vacation. I really want to go to the UMDF symposium this year, a girls’ trip with my bestie, and a trip to North Carolina- my cousins are both having babies this year! All three are probably unrealistic, but maybe at least one…

4. Be intentional and responsible with money. We have already taken several steps to cut back on spending (getting rid of cable, trading in my van for an older model) but I want to do more.

5. Be generous. Buy more gifts for people and give more to church.

6. Learn to grocery shop and cook. I am the world’s worst meal planner, and need to learn how, especially since I have a little person now who eats actual food, not round-the-clock formula from a can.

7. Keep the clutter OUT. Over the past year, we have drastically cut down on our amount of possessions, and it feels so good. Since I am a disorganized, messy person by nature, the less stuff I have to keep in its place, the better.

8. Eat better. You know, more whole foods, fruits and vegetables, less processed stuff. I’m doing a 30 day challenge in January to hopefully jump start this for me, and I’m also hoping I can lose about 5 pounds this month.

9. Read/research and implement more natural health remedies and preventative care. I’ve recently started using essential oils and want to do a lot more with them.

10. Blog at least 3 times/week.

11. Start early and plan thoughtful, intentional Christmas gifts for family and friends. I received amazing gifts this year and want to do the same for my people next year.

12. Take better care of myself. I want to find some good hair products, buy some clothes, and try to look less old and haggard.

Well, I was trying to think of 2 more so I could have 14 goals for ’14, but I’m tired and out of ideas. Yes, I am that person who is in bed asleep by 10:00 on New Years Eve. No shame.

Happy New Year, ya’ll!