Heavy heart....

So, I'm a bit delinquent in blogging. Rats. And I won't catch up right now. I just wanted to write something that's really been on my heart.

We found out a while ago that Ruby has Charcot-Marie Tooth disease, which is a neuromuscular disorder that runs in David's family, and which we figured both Ruby and Isaac have, but we had never done the testing. And no doctor's seemed to take us seriously about it, saying she's too young to tell and stuff without really coming out and saying that. She's already showing multiple symptoms, which isn't real normal for being so young. Of course we could be hypersensitive to those symptoms since we've worried she has CMT, but you know. Since we finally got the orthopedic surgeon to take us seriously (I like to think the article from Mayo that I found and forwarded on to her helped in that), and Ruby was blood tested, and has CMT, we found out that Ruby will be having surgery on her hips in April. The dates changed once, but as things now stand, she'll have her first hip operated on April 4th, and the second one on the 16th. I think. Wow. I might be in denial. =P Or just scatterbrained. Either way, I'm scared spitless that something will happen to Ruby. That we will lose her. I just can't shake it. I'm terrified, and feel like we're walking into something really bad. How dark and depressing is THAT?!?!? Anyways, I try to be brave and stuff, but inside, I'm just scared. And I have 3 more months of this.

Last night, while sweeping up the house, I thought about how if things go fine, and I have my Ruby home with me, even if she's in a half body cast and cranky as all get-out, and even if my most independent child is again almost completely dependent, I need to be thankful and not complain. Not even once. Which would be so not like me. I'm a complainer. I've also realized that I need to savor every moment I have with my kids. I need to get rid of distractions and take time to really get down, dirty, and play with them. Somehow over the past two years or so, I've forgotten how to do that. Sad. I miss the joy I had when I began on this parenting journey. And I hope to recapture it.

I'm so very blessed, and I need to remember that.

Ruby's situation updated AGAIN....

We had a "good" day as far as Ruby's hip situation goes. Had a visit with Dr. Walker, the orthopedic surgeon. She seems to get where we're coming with as far as our concerns about CMT and casting now. I had sent up some research that I had found, and it seems that she had read over it. The plan is now that if Ruby's test comes back positive for CMT, we will do surgery on one hip, followed by 6 weeks in a cast, followed by surgery for the other hip, followed by 6 more weeks in a cast. If there is NO CMT, then casting will continue as planned. Both Dr. Walker and the neurologist have said that it's unusual for a 4 year-old to show signs of CMT and be diagnosed, but hello - there's a family history, she has low muscle tone, lacks reflexes, and has an odd walking/running gait. Unusual to display symptoms this young? Perhaps. Possible? Yes. =P Anyways, off that rant...at least they're willing to listen and look into it. Dr. Walker also showed us the x-rays and explained some to us. The angle of Ruby's acetabulum (which I think is the hip socket bone) should be around 24% in a one year old and about 11% in an adult. Ruby's is steep at 55%...which could explain how her hips can slide out. If they do surgery, they will cut some of this bone, bend it down, and fill in the gap with a bone from a cadaver. If she's in the cast, the hope is that the bone will grow out and down some. If they do surgery, they will tighten the ligaments. If they do the casting, that is supposed to tighten the ligaments on it's own. Either way, the ligaments could stretch back out and then we're stuck. If I understand correctly, they are more likely to stretch out if there is an underlying problem leading to the subluxation (CMT in our case).

So, after we were done at Shriner's, we headed to the neurologist's office to see if we could get Ruby's blood drawn today for the CMT test. At first they said no, and we left, but on our way up the stairs, we were chased down by Dr. Farzam (who we were told was not in the clinic today...where did he come from?) who said he would get things straightened out for us. So we waited. While we were waiting, a quartet came and started singing Christmas Carols. Ruby went with David and requested that they sing Silent night, which they did. She stood by and sang some with them. Then, off to the lab we went. Today she had 9 vials of blood drawn. At first, it looked like there was only going to be 2, but then the amount grew. There seemed to be some confusion about the test and where to send it and what to draw, so...well, David will be following up on it. We hope that it gets figured out.

We have no appointment scheduled for surgery or casting, as we don't know when we will get the results of the test back. So, we have our second opinion appointment on the 9th, and then we're just waiting on the test results.

So, it was a "good" (meaning productive) day. We spent Sunday and Monday at the church working on the mural that refuses to be finished and then today we left around 7am and got home around 4pm, so I am looking forward to being home tomorrow. Minus the fact that David is going out of town tomorrow and will be gone 'til Thursday evening. =P Such is life, 'eh?

Oh, yeah. Ruby had some questions for the doctor today. 1. "How will I go potty?" (bed pan) 2. "Will you be gentle putting my cast on?" (yes =D) and 3. "How old are you?" (we didn't remind Ruby of this question at the appointment today. ;) After we left, I asked Ruby if she got all her questions answered. She said "no" because she didn't learn how old Dr. Walker was. Crazy gal. =D)

And that is that.