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. :)

Eye Surgery

The suture removal went well. It took forever to get her in. It was after 5:30 before she went into surgery, we got home just about 8:30. Poor girl was starving. Stopped and got Chick Fil A nuggets and Pat N Oscar bread sticks on the way home. She ate like crazy. By bedtime she was her same old self. The real pain are the eye drops. 8 times a day for 7 days, then 2 times a day for 7 days. We have been doing eye drops for almost 2 months as it is.

Ethan is doing better. He is taking less pain medication and even snuck in a shower after wrapping his foot up in plastic, just don't tell his doctor. He goes back to the doc next Friday about his foot. Once his foot is feeling better, he will be up to his wheelchair more often and out of the room I'm sure he hates by now.

Oh, before Kate's procedure last Monday, I took her to orthopedics next door and they removed her two casts but said she wasn't quite healed enough to go without them. Back on they went and then we hustled to surgery. Kate and I are getting to be super pro at doctor appts and surgeries.  I have to say, almost made me sick to be back at Rady's on Monday. I love that they fix my daughter there, but I know it too well, I don't want to see it again for a very, very long time.

Hopefully, Kate will get casts back off this coming Thursday. She is being fitted for a boot tomorrow, to wear after cast comes off. Taking the kids to Disneyland on Tuesday, low key and just hang out. Ice cream will happen. Yes. Utah trip next Monday. Hopefully, cast free, wheelchair free......

Catching Up

So...as most people know, Kate and Ethan were in a head on collision with a probable drunk driver. Both are healing, slowly and painfully for Ethan. Kate is doing a little better.

Kate is having her eye procedure done tomorrow at Rady Children's. It should be a very quick procedure. Last I heard it was going to be at 1pm, rotten, but Rady's was supposed to call me and give me an update on time and no call yet. So we are doing multiple drops of antibiotics and such the last two days to gear up for tomorrow. There is also a chance we can sneak her into orthopedics and get her arm cast off and a soft, removable wrap on.  Fingers are crossed.

That's all I can muster for today. I will give a heads up on how things went tomorrow. Hopefully it will be short and sweet.

Eye Procedure

The quick story is that her procedure to remove the sutures in her eyes has been postponed. It must be done at Rady Children's Hospital.  Huge pain on the one hand, totally good we are being safe on the other. I'm a little worried the loose suture will become more loose while we are in Utah in a few weeks.  She is still having drops in her eyes every day to make sure she doesn't get an infection, but she is quite tired of them and so are we.

Last day of school today, I'm not sure who is happier, the kids or myself.  I'm expecting a call from Shiley, hopefully by end of the week.

Yearly Cardiac Echo and Eye Update

It's been nice not having much to put on here. Sadly, it was a short lived respite.  Last Friday, May 31st, Kate had another eye appointment at Shiley Eye Center. Everything looks good, but....don't you hate that word, there is a suture in her left eye that needs to be removed because it is loose and could cause an infection. Apparently it's not crucial in keeping her lens in place so the Dr would like to remove it along with the corresponding suture in the right eye. I can see the suture when I put drops in her eyes, kind of interesting and a little freaky.

She is currently scheduled to have the sutures removed on June 19th. It's a 30 second procedure, but given her age and possible squirmy body, they think it's a good idea to lightly sedate her. This brings in the issue of her heart condition. It might have to be done at Rady Children's Hospital which turns the 30 second procedure into a half day ordeal. We are waiting to hear from Shiley on this. In the meantime, she is still getting eye drops for inflammation and now antibiotics in the left eye just to be safe.

Kate and Noah both had a cardiac echo yesterday, Monday, at Children's hospital. Kate also had an EKG and a chest x-ray. They were checking Noah to see if his pulmonary artery still looked slightly enlarged. It's still enlarged, status quo. The Dr isn't worried about it, but Noah has to be seen every three years.

Kate has an enlarged aorta. It has increased in size a bit, but her body has also grown so it's still within a safe range. Her daily medication to keep her blood pressure low was increased slightly due to her growth. She will go back in a year.

She did have to have her blood drawn, and I am not kidding when I say I had to physically restrain her to get it done. She made the slightest face when the needle first went in, but then looked at me like she knew she was making a big deal out of nothing.

She is seeing two more eye doctors in the next few weeks. One is tomorrow and he will be checking the general health of her eyes. The next one will be checking her to see what her new prescription is or if she needs to have one at all.

Kate has an appointment later this month to recheck her back and hips. This makes me tired to even think about. Fun for us.