On the Brightside

Kate had an appointment on Monday with her hips doctor, new X-rays were taken and lo and behold her hips look alright. The angle on the back film was making it look as though she had protrusio again. So that is a huge, huge, relief. But, the doctor did say that the lines between her femur head and pelvic socket weren't very thick, meaning it might need intervention sooner than he thought. Right now we are hoping for sometime in her 40's. That used to be 50's or 60's. You know what, I'll take it. With her aorta enlarged and her scoliosis so bad, I can put hips on the back burner for a while.

The rest of it...expander gets put back in her mouth next Tuesday. She see's her eye doctor at Shiley Eye Center next Thursday. This coming Friday she gets her new back brace to see if we get a bigger improvement on her scoliosis. X-rays for that in four weeks.

It's officially alright to tell me to hang in there, all that gooey crap. But please don't feel obligated, I don't actually want to hear it. I'm just saying I might not turn Hulk on you now as opposed to a few days ago. It's a start people.

Scoliosis and Worse

So yesterday started with being sad about Kate and her orthodontics appointment the day before but it picked up a little bit when we saw this beautiful rainbow on the way into her scoliosis appointment. But then we had to go inside, and killed the whole thing.

Kate has a new back brace and we went in to have X-rays with and without the brace on to see how it was working. She is an absolute fan of those little paper shorts she gets to wear every time we go to get X-rays. Luckily she got a gown to covers those beauties. This is a serious X-ray machine. We did shots with and without the back brace on. Then we went to our little room and waited.

Kate is reading constantly, but it's on her phone lately and drives me crazy. Why I think a book is better, I don't know. Weird Marci-ism I suppose. I brought Goose Girl by Shannon Hale to tempt her with and we got in three pages before they opened the door and came inside.

Dr Newton, two residents, and the nurse. Team effort apparently. He does a physical exam and has Kate bend over and measures her back while he tells me that her back looks really good on the outside for what is happening on the inside. I'm like, excuse me? Her back has gotten worse, like leaps and bounds worse.

Last March when she had her last X-rays taken, her top curve in her back measured 27 and lower curve 25 without her brace on. Now, her back is 36 and 37. That's 8 months to jump 10. She also grew almost 3 inches during that time.

We need to go back to Scope and get the brace fixed with some padding or something to get us a better result. With the brace on the number go from 36/37 to 32/32. It needs to be better than that.

So at this point I am having that inner panic thing going on, I really thought her back was at least holding steady, but now this. The two resident doctors are looking Kate over and playing with her brace and I am literally freaking out inside.

 My first reaction in a crisis is to make a plan and to figure out what the future possibilities are. So I asked Dr. Newton what our numbers have to be before the brace is no longer the best option, hate to throw the word surgery out around Kate, and he said 50. At our current rate, that could be around a year from now.

I'm letting that sink in and realize he's about to leave and I haven't asked him about Kate's left knee that she told me hurt her the day before. I know it's not his "area" but when I had his 2 minutes, I figured ask away. He had Kate lay down and put her leg through a series of range of motion tests and she did fine. Dr. Newton was mid sentence telling me it was probably nothing when he stops and says 'wait a minute' and takes the X-ray papers out of my hands and looks them over.

And this is the moment things fell apart for me. Recap, Kate has had bilateral hip surgery for protrusio, a condition where the femur heads start to push their way into the pelvic cavity. She had both femurs broken, turned, and bone taken off the sides to strengthen the inside of the pelvic floor to stop this from happening.

Left hip, you can see it on the X-ray, her femur head is pushing into her pelvic bone. You know that lump you get in your throat when you're about to burst out in tears but know you really can't? Hit me something fierce. A mix of fighting that lump and pure anger. The words going through my head are of the very angry, colorful variety and my thoughts were of my punching bag that I haven't used in forever.  Dr. Newton was telling me to follow up with Dr. Wenger and that we will see him again in 4 weeks and I am just nodding, digging my fingernails into my other hand just trying to hold it together.

We take our papers and go to check out and make our next appointments with Dr. Newton and Dr. Wenger. Kate is sitting on a chair and the lady checking us out took forever. My eyes are watering and I am struggling the whole stinking time. Of course it was taking forever. Finally, I got Kate and we started walking down the hall to the elevator. I asked Kate if she knew what Dr. Newton saw on the X-ray and she blurted it out like nothing, 'Oh my femur head is going into my pelvic bone again, on the bright side, if I have to have another surgery, at least I'll get out of going to school and gym class.' This kid.

At the end of the hall was a restroom so I left Kate outside the door with her book and I went in and let it go. I cried hard for about 2 minutes. Then I cleaned up and walked out like everything was just dandy. Kate was dandy. We were down the stairs and almost to the car when I burst into tears again, saying I'm so sorry, I'm so sorry, because there is this guilt, this horrible, crushing pain in my chest because I must have done something wrong when I was pregnant with Kate.  Kate came and gave me a hug, patting my back, and telling me over and over again that it's going to be OK. She finally said, 'If  I'm OK, you should be OK, Mom.'

I'm still off and on tears today, but at least I waited until now to write this or it would also be filled with all those fun words and phrases I had flying through my head yesterday.  Cardiologist tomorrow to check heart rate from new medicine and change dose as needed. Dr. Wenger and hip check up on Monday now. Orthodontist on Tuesday. Oh, my yearly yup I 'm still going deaf hearing test is on the 16th.

I get it, I really do. All those inspirational quotes about pulling through, hanging in there, blah, blah, blah, I don't want to hear it today. Maybe tomorrow or next week. But today, I deserve an angry, pissed off, hurt and sad day. I'm taking it. Sorry mom, I know you hate that word. Love you.

Orthodontic Update

As I have mentioned in previous posts, people with Marfan Syndrome can have narrow palates and issues with their bites. Kate has already had an expander in for a few months, she then had braces to help straighten a few teeth and they look great. But, there's always a but it seems, a week after she got her braces off last December, her orthodontist decided that he had been through enough of this life and took his own. Shocking and sad to say the least. How did this affect Kate? Well, his office tried to sell and hire new doctors for several months and Kate was seen twice by two random people. Her orthodontic care had a major lapse in care. Completely my fault. I should have been more on top of getting her seen at a new office.

We went to a new guy on Monday, really nice and just happens to deaf in his right ear also. There are more of us out there than you realize, certainly more than I did. The news he gave us was not great. Whether she has grown and changed things or the expander was not left in long enough, we don't know for sure, but we do know she needs an expander in again. 6 months this time and followed by a type of retainer to make sure it sticks this time. Eventually she will need braces as well. Joy, right. Kate still has 6 baby teeth on the bottom and 3 on top.

All I kept thinking was you've got to be kidding me. It's like starting from scratch and I hate, hate, hate to put Kate through all that again. I don't think I have ever thought the word crap over and over again so many times. They put in spacers and next week we get bands on her teeth, and the following week we get the expander in. Here's the kicker. Walking out to the car I noticed Kate was limping. She said her left leg had been hurting off and on the last two weeks. The pain was around the bottom and back side of her knee. I figured we are seeing Dr. Newton, scoliosis doctor, tomorrow and I would just mention the knee and see what he thought. Was not prepared in any way for what he found.