The Holidays--Hips and Eyes

 We went to Utah for Christmas and Kate had a great time playing with all of her cousins.  She is playing model with her cousin Mckell at the Union Train Station where we froze our patooties off in the name of family pictures.

I received a call from Dr. Wenger's office right before Arthur Christmas was about to start.  I ran out of the theater so I could hear him.  This was one of the Dr.'s working with Dr. Wenger,  not the man himself.  He said that after they had a meeting with other docs in orthopedics,  it was decided that Kate will need hip surgery on both sides.  The big, once a month meeting was actually canceled, so I guess this was just with the guys from Rady Children's.  He said that the left leg is worse than the right one and should be operated on first.  Her femur head is not only heading into her pelvic bone,  it is also misaligned.  I heard the words growth plates and steel plates.  I was squatting down on the floor with my knees up to my chest and was starting to think that maybe I shouldn't look like I was having issues so I can't tell you everything about that part of the conversation.

What I do remember is that she will have a cast that goes up to her waist,  it will bend at the waist,  and then down her leg.  Not sure how that works,  guess I'll find out.  She cannot use crutches because she can't put ANY weight on her leg so we are looking at 6 weeks in a wheelchair for EACH leg.  They can space the surgeries weeks to months apart, or they can do them just two weeks apart and she will be fully cast up each leg but your recovery time is cut down. He also said it wasn't an emergency,  but that we should schedule within or a month or so.  That feels like an emergency to me.   We go back to the Dr. on the 9th and get the details and figure out the best way to schedule the surgeries. Kate has always complained of pain in her thighs,  we even had an x-ray of them a few years ago,  her pediatrician said it must be growing pains.  I did ask the Dr. if her thigh pain could be referred from her pelvic/femur issues and the answer was yes. That is such a bummer,  I should be happy to have a cause I guess,  but I'm not.   I haven't told Kate yet.  I will before we go to the Dr.  Do not want to have that conversation and I need to be emotionally ready for it for her sake.  Still waiting for that to happen.

 In the meantime,  we got two kittens for Christmas.  Don't ask.  They sure make Kate smile.  Totally worth it. The black one is Bagheera,  and the ragdoll mix is Indy.   I am hoping that they will help distract her during her time in a wheelchair.  IF the cast only goes to her knee,  I am hoping to take her to Disneyland and go on the easy rides if she feels well enough. Zoo outings?  

I am just going to pull her out of school.  She is a smart kid,  I'm sure we can handle a little home school.  Hopefully have some play dates with friends to watch movies and play games, etc.  This also means that my going back to school will be put on hold most likely.  I'll know for sure when we schedule the surgery.  I hate typing that word,  surgery.

Kate is being fitted with her second pair of contacts on Wednesday.  I'm torn about this.  I'm told that surgery sooner might be best.  Insert screaming here.

The Hips

Kate had a CT scan of her hips today.  This almost didn't happen.  Our insurance only cleared her for one side.  Dumbest thing I have heard.  How can you see what's going on if you just get one side?  Her Dr.,  Dr. Wenger,  fought with our insurance provider and got both sides approved.  We only had a few days to get her in for the test because Dr. Wenger is having a meeting with a group of Dr.'s on Tuesday,  December 20th, to discuss her case.  We go back on January 9th to hear what the panel of Dr.'s think we should do.  I can call before then to see what he has to say about her CT results. 

We are getting pretty used to going to Rady Children's Hospital.  As we were hopping out of the van,  Kate asked what we were taking a picture of today,  her heart or her hips.  After I told her it was her hips,  she skipped her way to the parking garage elevator,  and I had a little pain in my heart.  She is so happy and carefree right now.  I hope that this is how it will be for a long time.  I had to stand in another room while Kate had her CT scan.  It had a little window and this is the best picture I could get.  They taped her feet to a little board and put a warm blanket on her,  which she loved.  It lasted only about 5 minutes which was just about right for both of us.  She said she couldn't see that I was behind her because she had to hold very still.  What a good patient!

Kate has always complained of some leg pain,  along her thigh's mostly.  We even took her to have x-rays a few years ago.  They didn't see anything and we chalked it up to growing pains.  Kate legs go on for miles,  so it made some sense.  Now, of course,  since she has been complaining of leg aches a little more,  I am wondering if it is referred pain from her hip issues somehow.  A little Motrin fixes her up,  but I will mention this to her Dr.  when I call for the results of the CT scan.  It's totally likely that these aches and pains have zero to do with her hips.  That's what I tell myself anyway.

Cardiologist and Drugs

Kate has increased her meds for her aorta issues.   Decided against the liquid form, hello $112 a month,  and got the pill form.  The pills are not scored, but I found a handy dandy pill cutter that does the job.  The new pills are a little larger than the first ones,  but Kate does a fantastic job getting them down.  One and a half pills every evening.  Still thought they would make her drowsy,  hoping a little,  but no dice.  She is still bouncing off the walls all night.  That's a good thing I guess.

Kate is a such a sweetie.  She is so mindful of other people, their pain or sadness.  I was sick this weekend,  spent all day Saturday in bed.  Kate made me a get well card,  and put a note up in the kitchen that said to check on mom every once in a while.  How did I get so lucky to have such a sweet daughter?  Sadly,  my being sick put Disneyland off yet again.  I am aiming for this coming Saturday,  but I am not making solid plans.  That way it may actually happen.

Contacts

I took Kate back to Shiley today where she got to wear contacts for the first time.  She did a great job letting someone else stick their finger in her eye,  much better than I would have done.  The good news is that Kate said she could see pretty well and that everything looked bigger.  We were told that everything would look bigger by her eye Dr.  Kind of interesting.  The bad news is that they bugged Kate.  She said they were uncomfortable.  They moved around quite a bit.  They are ordering another pair that they are hoping will fit,  and feel,  better.  Two weeks.  At least that's what they say.  I'm betting it will be longer.  For now Kate is happy with her glasses,  but she says she would like contacts if they didn't bother her so much.  We'll give the new pair a try after Christmas and see how they fit.  Fingers crossed. 

Just as a side note,  I saw someone about being fitted for a cross over hearing aid.  Waste of time.  They would have to put a hearing aid in my "good" ear and I would have zero "natural" hearing.  That would drive me nuts.  Also,  because I have sensitivity to sound,  the hearing aid would most likely make it worse.  I'm actually cool with being a bit deaf.  I don't think people around me can actually tell,  at least not catch on for a long time.  Sign language is pretty fun anyway.  Oh,  I have lost a little more hearing in both ears.  Just slight, but still.  Guess I should stop trying to learn Italian and get my fingers cruising through more signs. 

Are You Kidding Me?

Disneyland has been postponed.  Sweet Kate up all night with the stomach flu.   I'm going to follow Thumpers advice,  if I can't say anything nice,  then I won't say anything at all. 

Cardiologist Visit

We saw the cardiologist this afternoon.  Of course,  we waited an hour and a half before we actually saw the Dr.  So it's a good thing we broke down and bought an iPad 2 yesterday and downloaded a couple movies on it.  I also put a few games on it.  Kate played Cut the Rope for most of that time.  Thanks for the suggestion,  Traci.  We went straight from the hospital to a birthday party for one of Kate's friends.  It was at Pump It Up,  a blow up bouncy place for kids.  I was a little nervous to let her go,  but she promised she would play chilled out.  When I picked her up,  she mentioned that she was hit in the head with a ball.  She assured me the ball was very soft and in no way caused any damage.  What a cutie. 

The cardiologist increased her blood pressure medication.  We go back in May for another cardiac echo and to get her blood checked to make sure all her organs are cool with this medicine.  I hate insurance.  New rant for the day.  To get her the exact milligrams she should have,  we need to get the medication in liquid form.  My insurance won't cover the liquid form. What???  Ugh.  It will cost $112 every month to fill her prescription.  I am calling the Dr tomorrow and seeing how we can do this with pills.  So much fun. 

Stupid Protrusio

Stupid is not a nice word.  But, protrusio hasn't done me any favors,  so therefore,  stupid protrusio.  We saw Dr. Wenger today at Rady Children's.  He wanted a better look at Kate's hips,  so off she went for  yet another x-ray.  You may be able to see the small dot he put on Kate's right side,  pictures left, that shows where our issue is.  The head of Kate's femurs,  both sides,  are creating too deep of a pocket and will start pushing into her pelvic bone and causing issues there. 

The fix?  Well, the Dr. said that there were exercises and "some surgeries" that may help slow down or stop the process.  He has ordered a CT Scan of Kate's hips to get a better look.  We have to have that done so the results are back before the 20th of December.  On the 20th,  Dr. Wenger will take all of Kate's x-rays and CT results to a committee of Dr's who will discuss what should be done next.  He said that Marfans can make bones softer than they should be. Her femur could actually start pushing in her pelvic bone.  Wonderful.  He also said that,  while protrusio can be caused by Marfans,  kids Kate's age having this problem is not as common. The Dr. said that we may be alright for now,  but when Kate has a growth spurt as a teen,  we may have problems.  I guess we wait and see what the committee thinks.

Dr. Wenger said she could go on with her normal activities for now.  At the time I didn't even think about this much,  I just nodded my head and thought great.  But,  thinking about it now,  it may mean that she may have her activity level changed at some point.  Between this and her aorta,  she might become a couch potato.  As if I could make that happen.  Kate is a highly energetic kid,  getting her to slow down at all will take serious effort. 

He asked if Kate was having any pain.  Dr's seem to be genuinely surprised that she is not having any.  That is my one saving grace right now.  I asked Kate's teacher to let me know if Kate has ANY pain or anything related to pain.  Pain will NOT be tolerated.  That sounds good, doesn't it? Like I really mean it?   I am all about medication for pain control.  Bring on the drugs! 

Kate.  She literally skipped out of there.  I know some of this is not computing.  She is only 8,  and for once,  I am glad she isn't getting this whole picture.   I left the appointment teary eyed.   I also left angry.  I found myself saying something I swore I would never say.  THIS ISN'T FAIR!  I would never think that about myself,  but this is my baby.  So, today's theme is that it's not fair and I'm ticked.  It's a good thing there are hours between appointments and me posting.  "Ticked" is a very watered down version of what I have been feeling today.  Are you sure we are only given things we can handle?  I think someone made that up to force someone else to buck up.  Well, I don't like being forced to do anything.  (Insert screaming and yelling here)

There's my rant.  The best I can do in writing anyway.  Just watch out if you see me in the flesh.  I was sarcastically thinking earlier that my life is like freaking Disneyland.  So, you know what?  I'm taking the kids out of school Thursday and going to Disneyland!  Ha, take that life!

Cardiologist tomorrow.  See what I mean? Freaking Disneyland.

The Eyes

First,  let me just say that the last post was,  well,  sad.  I read it and thought,  who is that poor, unstable person? Oh wait,  it's me.  Not all days, hours, or moments are that terrible.  As a matter in fact,  most of the time I am a fairly happy and upbeat person.  Just had a bad day.  I think a bad day here and there is probably normal and ok.  Should I find that I can't get myself out of bed one of these days,  I will call for reinforcements.  I don't see that happening,  but it's always good to have a plan. 

Today we saw Dr. Heichel at Shiley Eye Center.  He is monitoring her lens movement.  After 2 hours,  yes 2,  we found out that Kate's lenses have not moved since the last visit three months ago.  Yay!!  We go back in 3 months to recheck.  The Dr. is hopeful that her lenses won't ever move, or at least not for a long time, and that will mean no surgery.  As long as she is seeing alright,  we won't do the surgery.  Banking a lot on those contacts.  Here's hoping. 

Kate is a trooper.  She is starting to get a little confused about which Dr.'s are which.  I mean, the poor kid has 2 eye Dr.'s,  2 orthopedic Dr.'s,  a cardiologist,  and a genetics doc.  I'm having a little trouble myself.  Last night we were kneeling down for prayer and Kate said something about hoping we don't find anything else wrong with her body.  She then rattled off the list, eyes, heart, spine, and hip/leg.  She acts so great I sometimes wonder if the situation is sometimes lost on her, and then she'll say something like that.  Bummer.  They say knowledge is power, so I'm glad she's taking it all in. 

The picture is outside the Dr. office today waiting for her eyes to dilate.  She loves those "glasses" they give you so you can go outside.  Wouldn't you know it,  there's a food cart right outside the door.  I gotta quit this buying a treat after every Dr. appointment.  But who knew when we started it was going to be so often?  Ah well,  the girl deserves a cookie now and then.