Middle of the Night

I woke up last night around 2 am with a bad dream. Typical bad guy with guns, there were elevators involved, you get the idea. Anyway, I couldn't get back to sleep so I did a tour of the home and checked on kids and cats and doors and windows. This is what I found in Kate's room. Asleep on the hard wood floor.

Kate is such a brave girl, but it drives me crazy that she doesn't come and get me, tell me she hurts. Anything. Yes, I know that having kids let go of mom is an eventual good thing, but pull on my apron strings! Come on! This is what I can do, make you feel better.

This little stinker, she says things just to drive me nuts. She tells me that she runs super fast or did some heavy lifting or something at school today. And then she will laugh and laugh. She knows she isn't supposed to, and she doesn't, but she likes to get me going. And I do! I play into it every time. 

Wednesday we go get Kate measured for her back brace.

The Back

April 2014

 Kate has been complaining off and on about her back hurting since last spring. We took her to see her spine doc, Dr. Newton, last April. He confirmed that her scoliosis had gotten worse, but not quite bad enough to put her in a brace. He didn't see anything obvious that might be causing Kate to have pain, and dismissed it as a possible strain on her back.

In the time since last April, Kate has still off and on complained of pain, but never so bad that a little Tylenol hasn't helped. There have been a few times I would find her asleep on her floor in the morning, stuffed animals all around her. I had assumed it was just a kid thing, how fun to sleep on your rug with your animals. After it happened a few times I asked her about it. She said that her back hurts in the night so she gets on the floor because it feels better.

Geez, all the little ways your heart breaks. I felt terrible. I had a talk with her and let her know this is exactly what mom's are for, come and get me, tell me you hurt, let me do what I can to make it better. This is my job. Of course she said I had other jobs also, like cooking, and then we laughed and laughed. I give out square, healthy meals, but to say I cook is a bit of a stretch.

August 2014

So today we had another x-ray and meeting with Dr. Newton. You can see from the two pictures that from April 2014 to August 2014, four months, the curvature of her spine increased significantly. When she bends over and touches her toes, I didn't used to be able to see it, not really. Today, I saw it. It was rather shocking. I didn't really know that it could look the way it did. If you look down the center of her back, along the spine, you can see that the right side and left side are not even, like not even close to even. One side is higher than the other.

On the way to the appointment today, out of the blue Kate says, "well, if I end up with a brace, at least my posture will be really good". Foreshadowing right there. Here's the deal. The Dr. will send over a request to a place that makes back braces and get the insurance approval. Then the brace place will call us and we will go in and get Kate measured for a brace. This should all happen within 2 weeks or so. Then the brace needs to be made. They will have us back to try it on and make adjustments. Then Kate gets to wear the brace for a few weeks and then go back to see Dr. Newton and they take another x-ray and see if it's properly working. She will need to wear the brace around 20 hours a day. The other alternative is surgery.

This is a post it note that the nurse handed me as we left. The measurements at the bottom, 5 foot 1 inch plus, this is how tall Kate was in April.
Now she is 5'2" plus. Four months. Just four months.

This is the issue. Kate is still growing and will continue to do so for several years. I don't want more surgery, I don't. Why does it feel inevitable? The nurse offered to connect us to other parents and kids who are in the same boat. Maybe I will do that.

First things first. Abby is leaving on the 4th to move to France for her junior year of high school. Nothing stressful about having your 16 year old move to another country for 9 months. That's sarcasm, Sheldon, as Kate would say. Between all of this, I am a living headache, horrible nights sleep, semi-zombie. Work, kids, health, pets, house.....sign me up for the padded room. It's starting to sound like club med.

I'll update when we know about the Echo and EKG results. On the bright side, because we always have one, we went to Disneyland this last weekend, having endless chips, salsa, and guacamole nearly every night, and basically throwing rules to the wind for the next week or two. Serious rebel here :)

Full back x-ray

Yearly Echo and EKG

Echo

 Yesterday we had our yearly visit to the cardiology department at Rady Children's Hospital. Kate commented on the way in how somethings have changed at the hospital, how this isn't our usual parking spot, etc., this is how you know you hang out at hospitals too often.

I received a call from Kate's cardiologists office a few days before letting us know that we could have the tests done, but that the doctor was in the hospital himself, infected foot from a previous surgery, and wouldn't be able to have an office visit after the tests. So, he will look at the results and give us a call in a few days. We will then reschedule an office visit for a full, in person, check up.

EKG's are super fast, easy, minus the stickiness of the little tabs. The Echo, however, took us almost all the way through the movie Tangled. 

I'm always a little covert when I snap pictures, who knows if they care, but I do it covert just in case. My daughter, I can do what I want. Basically my attitude lately. Pretty much hating rules and anything that has to do with social conformity. Life is too short, too hard, to have to deal with other people's version of how life should work. Rant over.

Getting ready for Echo

EKG

Surgery, April 15th

My favorite picture, this is post surgery and Ethan just asked her where it hurt and she replied, "where do you think?" and gave us this look. Spunky little stinker. 

 

 

When Kate had bilateral hip surgery a couple of years ago, we knew this day would come. Kate had long plates with screws on the outside of each femur and they needed to come out. And the main reason being that at some point in the future she will likely need hip replacements. Great, right? I'm hoping for when she is 50, or 60, or never.

Waiting to go in

Here is a girl who is far too happy to be having surgery. She knows the routine so well, she can tell the staff members what is coming next.

Kate was supposed to use crutches for three weeks post surgery and no sports for six weeks. She can't do sports anyway due to her heart, but no rough housing around for six weeks. The bones were very weak and needed time to fill in the area where the plates and screws had been.

 The surgery went well and Kate was a trooper. One night in the hospital, yay! She did struggle a little bit to put pressure on her legs and so for the first 2 days she used a wheelchair at home. By day three she was sneaking about without her crutches.

At our one week post op visit, Kate pretty much carried her crutches into the hospital. I had to keep reminding her to use them, if for no other reason than the doc won't yell at mom. Everything looked great, but we were told two more weeks on the crutches just to "slow her down". She took them to school for one more week, only used them at recess and to walk out to the car. She has done so well with this surgery, by day three she was just taking Tylenol and was lamenting to go swimming. That had to wait.

Kate is doing great. One little glitch...a few days before surgery, Kate complained that her back hurt. This happened about three times. Finally had to take her in. The doctor thought it was just a pulled muscle and she hasn't complained since. But, since she was there, they did a back x-ray and found that her scoliosis has gotten more severe. We are officially on a 6 month monitoring schedule for that instead of the yearly. Sigh... and the band played on.

Practicing with crutches before surgery

Literally feeding her ANYTHING she wants just to get food in that belly. Almost ready to go home.

One week post surgery visit. Kate LOVES those paper shorts. (Sarcasm, Sheldon, as Kate would say)

Such a happy girl, pre surgery.

 

 

 

 

Braces!

First of all, ignore the water, she had just had a drink from the fountain :)  Another beauty of Marfans is the palate issues and the bite issues. She got her expander out and braces on the top teeth probably about 2 months ago. Yes, I know. I am just rocking it at keeping things updated. As you can see from this picture, her top teeth are going up and down, and up and down, all over the place.  She was a little sore the first two days, and then nothing.


We went back 6 weeks later and the results are amazing! Check out this after picture!  She is getting braces on the bottom in a few weeks. The teeth are looking straighter, but the bite is still way off.

Long Overdue Update

Ethan had surgery a few weeks ago and had his hardware removed from his foot. He was home the same day and had a few days of pain, still limping pretty decently, but doing alright.

When you have Marfans you can have a high palate, that is also too narrow. Of course, Kate has this. She seems to get it all.  She had a spacer put in a few months ago to help correct this. On Monday she had the spacer removed and braces put on her top teeth to help correct her bite and straighten her top teeth. Lower braces will be in her future as well.

Her last appointment with her cardiologist went well, it was months ago. So far her aorta is stable. Her eyes are doing well. Her back, sometimes she complains about it hurting, but it has been a while since she has complained about it. We are in keeping stable mode. Fingers crossed we stay here.

On April 15th Kate will have her hardware removed from her legs from her hip surgery she had two years ago. It will require an overnight stay at Rady Children's, and then a few weeks on crutches, which she has never used so this could be interesting.

Kate is an amazing kiddo. Her spirits are as bright as ever, she seems to take everything in stride. I, on the other hand, am sick to think about staying overnight at Radys. Great place, nice staff, but I need a few more years to be OK going back there. I am becoming a wimp. Or I am tired. Feels like swimming against the current for so long that if one more wave comes I'll end up floating away. That won't happen of course, I'm the mom. Mom is tough and strong and can deal with anything for her kids. But man, the fight feels harder lately. My own issues I think are playing a role in that for sure. My hearing is quasi stable, buying me more time before I go deaf, yay. The tinnitus is loud and annoying, sensitivity to sound, blah. Let me complain a little more, haha.

In other news, I started working as an RN again doing laser tattoo removal, which I love doing. I have told my patients if they need a break, they need to yell loudly. The laser is loud and extremely painful. And yet everyone thanks me afterwards and I even get tips! I am taking to kids to see their cousins in  St. George next weekend. Can't wait. This is what matters.

So...

This is going to be short, but sweet.  Ethan is getting up with crutches, although it tires him out pretty decently, it's a step in the right direction. His right foot is still causing pain, but he's hopefully he can use his new hot tub in about a week.

Kate had her yearly scoliosis test today and everything is normal. She will go back again next year. She has two more weeks and then we get her eyes tested for prescription glasses and we get her ankle rechecked. Same day. Fun. She hated the wrist wrap and promptly ditched it after one day. She rarely complains about her wrist and is pretty functional with it.

I had my dumb appendix decide it needed to be out on Sunday the 4th. That was fun....not really, but laugh or cry, right?  Still sore and swollen. Had to do three incisions instead of little holes, too much scar tissue from  having the kiddos. Well, nothing can be easy over here. Apparently.

Looking forward to school starting and life getting "normal" again. Thanks to everyone for all the rides, meals, toys, etc. I sincerely hope I don't have to repay your kindness, that's way better, right?  And I hope you have never have to supply my family with anything else in the future. :)