Eye Surgery Postponed

So here's the deal.  It's been recommended, because of Kate's other health issues, that she have her eye surgery done at Rady Children's Hospital. Dr Heichel, her eye surgeon, does not currently have privilege's at Rady's.  He is trying to get them, it's a several month process and he is several months into it, so the call may come tomorrow or 2 months from now. I think it's best to not push the surgery date and have it done at Shiley, I feel better about it being at Children's. No reason other than mother's intuition? Hopefully it will be sooner than later.

In the meantime, Kate is doing really well in 3rd grade. She had two friends over the other day and Kate was a good head taller than both of them. She has mentioned that she is the tallest in her class. It will just be this way through elementary I think. In middle and high school she will blend in better, although everyone will think she is older than she is. Can't win everything.

Eye Surgery Update

Hello everyone,

Right in the middle of my timed Medical Terminology final, I got a phone call from Dr. Heichel's assistant at Shiley Eye Center.  They spoke to Kate's cardiologist and it was decided that the surgery should take place at Rady Children's Hospital. The surgery date is currently unknown. I will post when I hear something.

I think this is a good thing.  I was trying to give her medical history to the RN at Shiley and I just cannot spew out that much information in a coherent way.  The Dr.'s should have access to her medical records at Children's which is nice. And just in case, it's a full scale hospital.  There won't be a just in case, but still. Just in case.

Off to La Quinta Resort tomorrow to bake and swim. Have a fun Labor Day weekend everyone.


*Aced my final, by the way.  Yay for the little stuff.

Eye Surgery Date Change

Eye Test

 New Surgery date is September 11th. I changed it because we have an early entry reservation to CA Adventure on Saturday the 8th, and yes, getting in to ride the new Cars Land rides before the crowds will be worth it.  I completely forgot about it when I scheduled the first surgery date. Fun before surgery as often as possible.

 

 Today Kate and I went to Shiley Eye Center for her pre-op appointment. We got there are 10, and left about 12:30.  They actually shuttled us to the first room pretty quickly, but then the inevitable stall out. They took Kate's vital signs and then we spoke with a pre-op nurse who gave Kate her own little bag to bring back to surgery. It was full of prescriptions that I need to go fill a few days before surgery.  She has to have antibiotic drops in her eyes every day for a few days before surgery. The nurse also attached a coupon for each prescription. Can't wait to see how much they cost me.


We then took a little tour to the surgery floor and recovery room where Kate immediately decided that surgery had once seemed like a good idea, but was no longer on her to do list. The anesthesiologist came out and talked to us, aka. me, because Kate had clammed up and was being rather serious about this no surgery thing.

The ever famous snack stand at Shiley

Right now she is scheduled to have surgery in the Shiley center, but given her distended aorta, the surgery may be moved to a hospital. We will find out a few days before surgery. They are going to be talking to her cardiologist to OK the surgery. Always a chance we will have to see him before surgery as well.

After the tour we were sent back down to get Kate an EKG and have her eyes measured. The EKG was fine, she is a pro, but she hates those sticky pads like no other. It took a lot of alcohol wipes and patience to get them off without her screaming bloody murder.

And then we sat, long enough for me to really start thinking. That is never good. For months I have been saying how I can't wait for this surgery, for Kate's eyesight to be improved. But at that moment, all I could think about was what if it doesn't go well and she ends up blind. I wanted to find her Dr. and ask him about the odds. Then, of course, I had this whole discussion with him in my head.  He couldn't possibly say that everything was going to be fine, they never say it in those words, lawsuits I suppose. So, in my head of course, I started yelling, "but are the odds in our favor?" And then I started thinking about Hunger Games and conversation started sounding like a movie. Thank goodness they came to get us for her last eye test. After we got that done, we were out of there. I was feeling rather guilty about the whole sticky pad moment so we hit the snack shack and ditched the rest of the school day.  HA! I know you wish I were your mother. :)

This weekend we are heading to the desert, to swim, get hot, swim, get hot, and repeat until Monday.

Eye Surgery and Physical Therapy

Kate went back to Shiley Eye Center on August 10th to have her retina's checked by Dr Goldbaum.  She needed to to have her retina's given the go ahead before we proceed with surgery on her lenses. People with Marfans Syndrome are at risk for retinal detachment. The hits just keep coming. Actually, I wish the hits would please stop. No more issues.



Miss Kate had to get her eyes dilated again. The only respite was knowing that after you get dilated, you get to go to the snack cart outside. She chose Doritos, as you can see on her lap.  She digs the shades when things get too bright.

 Kate has her pre-op appointment with Dr Heichel, the surgeon who will perform her lens replacement. That had first told us that she would have her eyes done separately, a couple weeks apart at a time. Now, because she has to go under general anesthesia, the Dr has decided to do both eyes at once.  I'm quite happy with that decision. She will wear plastic lenses over her eyes to keep her from touching them for 24 hours then every night for a week or so.

Surgery is scheduled for September 5th.

Kate is doing pretty well, but she still has some muscle weakness. She is going to physical therapy a few more times to try and build up her strength. I know this picture is small, but she is smiling so cute, I couldn't help but put it up.

School starts tomorrow, 3rd grade! Noah is starting middle school, and Abby is starting high school.  So wrong.

Update on The Hips

Busy, busy, and really busy.  I took Kate to see her hip surgeon about three weeks ago. I know, terrible. Since then we have been to Utah at the cabin, Bear Lake in Idaho, and a couple days at Disneyland, of course, Legoland, and Sea World. I think that's pretty good. I'd like to relax the rest of the summer, reading and doing absolutely nothing. Well, it's good to have a dream, right?

Kate's Dr. said she is healing well and we just need to continue building up her muscle strength. She did pretty good running around everywhere. Some rides at Disneyland and some of the activities at Bear Lake made her hips ache a little, but overall she is doing fantastic. We were told that she should have her hardware out next summer. Major bummer. I thought we would have a couple years off. Should be relatively easy surgery, as surgery's go, but still, no fun.

I went through Kate's closet and took bags, yes multiple, of clothes to her cousins in Utah. She is wearing size 12 everything. She turns 9 in October. That is a little depressing.

I am planning on making an appointment with a retina specialist this week so she can be checked out to see if she is a good candidate for her surgery. People with Marfans are at risk for retinal detachment.

Took all the kids to the dentist today. I don't know why it didn't occur to me, but because Kate had recently had surgery with hardware, they just did an exam, no cleaning. I had thought about the heart and having them treat her prophylactically with antibiotics, but the hips just did not occur to me.  Another call to the Dr to see what to do about that the next time we see the dentist.

Kate has started going to Indian Princess camp with her dad. This last weekend they went to the beach. Kate got up on the surfboard and was a real pro. This is a picture of her at the beach.  Gotta love the hat.

We are heading back to Utah the first week of August for South Weber Days.  Can't wait!

6 Month Cardiac Echo

In general, no news is good news on this blog.  But today I actually have good news.  Kate had her six month cardiac echo check up.  We got there at 8:45 and left a little after noon.  Typical.  This picture is the cardiac echo in process.  What you can't see is a screen playing Ice Age off to the right. I didn't watch much of the echo  this time.  I glance enough to make out her ventricles and her valves and then I start seeing things that don't exist; valve leaks, areas too large, etc.  So,  I played Kings Around the Corner on my phone.  The tech must have thought I was pretty unconcerned. If he only knew.

They also hook EKG up to Kate and monitor her the entire time.  Good thing for electronics to keep us from reality.  Kate and her movie,  me and my iPhone.  We did have books as well, by the way.  Never leave home without one.  Or two.

After the echo we waited yet again in the cardiac waiting area.  So loud, kids,  a movie playing.  I told the reception gal that if she calls for me, and I don't respond,  it's because I'm partly deaf.  She laughed and said, "Yeah, it's really loud out there."  I must have given her a weird look because she then said, "Oh, you're serious."  Well, yeah, I'm serious.  Who tells people they are deaf and not mean it?  I would have said it's stinking loud in here and I can't hear a thing,  if I were trying to make that point.  Slight rant from the deafy here.  Sometimes I wish I were wearing a sign that announced my hearing state.  Double edged sword,  people can't tell,  which can be nice.  Pain in the butt because people can't tell and think I'm ignoring them or just plain stupid.  I'm a little stupid,  but still :)

We were finally shown to a room and then had no less than four interns come in and ask us questions,  taking the history, etc.  Dr. Grossfeld finally showed up.  At this point I was pretty anxious and just wanted to hear that nothing had changed and we were cool.  But, being the nice Dr. he is,  we exchanged the pleasantries first. Here's the good news,  everything looks great.  Well, not great, but no worse than it was six months ago.  We are staying on the beta blocker and continuing with decreased activity level.  Same as before.  Huge relief.

Kate also saw a physical therapist on Tuesday and was given some exercises to strengthen her muscles.  She still walks with a little twist in her gait and still walks up and down the stairs walking sideways.  Most of her issues,  they think,  are because her muscles are weak.  Exercises should help.  Checking with insurance about getting more treatments with the physical therapist. 

As a final note,  I finished my RN Refresher course at UCSD and start working on my classes for Health Informatics next week.  They tell me I need a math class!!  Rotten news for math illiterate people like me.  Wish me luck, heaven knows I will need it.

Good News, Finally.

I know, I know, I haven't posted in forever.  So here's the latest.  Kate started going back to school about 2 weeks ago.  She is still on her walker, until tomorrow supposedly, but she still has an interesting gait going on.  She is supposed to be having physical therapy, or at least a consult, and I'm still getting through all the authorizations, etc.

Kate was very nervous to go back to school.  She said she just wanted to stay at home the rest of the year.  That first morning she told me she was afraid that everyone had forgotten about her.  We pulled into the school lot and I got her walker out, we weren't 10 steps before we hear someone across the street start yelling her name!  Next thing you know a bunch of kids are yelling, "Kate's back, Kate's back."  She had a grin, ear to ear.  She is just dandy going back to school now.  I will admit,  I was so used to her being glued to my side,  the first couple of days were strange for me.

Kate had her follow up x-ray to check her scoliosis and spondy in her back.  I took her the Rady Children's and we were dressed and ready for x-ray when the tech was like she's here for her hip x-ray, right?  Um, no this is for her back.  Well, the order said hip.  I said, well the order is wrong, please go check it.  Needless to say, they had Kate on the table ready for hip film and I made them wait to get the right order called down. Sure enough,  Mom was right.  I went from being that annoying mother who won't let us just do our job,  to thank goodness you are keeping track of these things.  Whatever.  Got the films done and while we were waiting to talk to Dr. Newton about the results,  the nurse came in and apologized for putting in the wrong film request.  It was fine,  but parents need to be patient advocates and not always rely on medical staff.  Ok, off my soap box.   The good news is that her scoliosis and spondy have remained stable.  We go back again in a year.  Thank you, thank you, thank you.  So happy to have good news.

We go back to cardiology on May 30th for another cardiac echo and check to see if her aorta has changed.  That's the new prayer, the heart.  We will schedule eye surgery for early fall.

This picture is of Kate and her "boyfriend" Ethan.  They have been in the same classes since kindergarten.  He sent her cards while she was out that said, "you are my best friend."  This was taken at his house last Saturday.  He is moving to AZ for two years for his mother to go to school.  Everyone at the elementary, teachers,  have talked to me about how sad it is to break them up.  He is tall like Kate, so she loves that.  It was the sweetest thing when we showed up at his house.  It was an open house, drop by thing for the mom to say good-bye to everyone.  Ethan had been swimming with three or four other boys when we arrived.  He ran up to Kate and said, "I have been waiting for you to get here all day."  And then he promptly told all the other boys that he wasn't' playing with them anymore and he took Kate and off they went to make a lizard trap in the backyard.  The funny thing was when we walked out back to all the adults,  Ethan's mother introduced me as her future in-law and Kate as Ethan's girlfriend.  They decided they would Skype and write to each for the next two years.  So sweet.

I think that covers it for now.  I am having way too much homework for my nursing refresher course.  I am using Kate as my final project so I have been doing her history and physical and doing research on all her physical issues.  It's good to be informed I guess,  even if I don't like what I am reading.  Since I cannot hear well,  I am going to go back to school for Health Informatics.  With this and my RN,  I should be able to find a fun job.  I hope.  I start in June.  Yay!

Houston, We Have Lift Off!

We do indeed have lift off, a shaky one, but it still counts! Woo Hoo!

Yay!  The walker arrived today and Miss Kate is practising standing up, moving her feet a little, and sitting down.  She was way nervous last night and expressed all sorts of concern about falling, the walker tipping over, etc.  We had a long discussion, at 11:30pm of course,  about how we will go slow and practice and how everything will work out great. 

It was an actual act of you know who to get this walker today.  The original order was never processed and I was told yesterday it would take 2 WEEKS to get in the walker the Dr. had ordered.  Um, no.  No way.  Totally unacceptable.  I talked to the people at Apria Medical Supply forever yesterday and I ended up calling her Dr. office who directed us to a different medical supply company.  Thankfully they had the perfect walker in stock.

Kate was so nervous to try it,  but as I am sitting here on the computer, Kate is like a jack-in-the-box,  up and down, over and over again.  And I must add, with the biggest grin on her face.  Now that is a reason for Yay.

3 Hour Dr. Appointment

 We saw Dr. Wenger today, yes it took 3 hours.  Here's the deal.  I'm not sure what I was thinking,  but I didn't realize that they actually severed her femur in two.  I thought there was like a cut in it.  Dumb, yes.  Very.  So,  you can see on this x-ray on her right leg the line where the bone is starting to heal, sorta.  It's hard to see.  So Kate can start walking next week with a walker.  She has to use a walker for the three weeks after that.  I swear they make everything sound so much easier at the beginning and then throw all this other stuff at you slowly.  I guess it's good,  we would all go nuts knowing what we were getting ourselves into from the start. 

 Kate had the fun experience of being x-rayed twice.  The first time they didn't get low enough to get all the "hardware" in her legs.  Probably why it took us three hours.  I have to say though,  Rady's is a well oiled machine.  Even if a slow one.  She is totally a "Princess and the Pea" girl.  Had to have something under her head while we took the pictures.  Had to express how hard the table was, etc.  At least she did it laughing.  Oy.

So these are the feet, that won't wear the shoes, that her mom purchased for her yesterday!  She has long feet with a boney protrusion on the outsides of them.  It's part of her foot bone, I guess it's part of Marfans.  Anyway,  she needs shoes to float around her feet,  not actually touching any of the sides.  Back the shoes will go.  I just bought her a pair of shorts that were size 10 and I had to take them back and get a 12.  She's 8!!!  It used to be like this cool thing she was tall,  now it just kind of depresses me.  At least she is proportional,  unlike some Marfans sufferers. 

Asked about going to Disneyland.  Haven't been since January!  I know,  so sad, right?  Dr. Wenger said it was probably a better idea to wait another month.  So we are looking at middle of May.  I failed to mention that she will start physical therapy as well.  We did ask about that before the surgeries and were told she most likely wouldn't need it.  Whatever.  How's that for an attitude!  I learn from the best,  Miss Kate.

Easter Sunday

 We are starting to get out into the world a little bit more.  I took Kate to the library this last week.  I have taken the kids to the library almost every week for at least 10 years so this was a nice, routine thing to do.  She was a little worried about people staring at her in her wheelchair the first few places we went,  but she pretty much just cruises past people now without a glance.

I have completely ruined her while she was in her cast.  Brushing her hair is all I am allowed to do.  No styling whatsoever!  This kid is all attitude.  I am sure it will serve her well someday,  but I'd sure like to do something with that mop on her head.  She is getting dang speedy on those wheels.  I come at her with a brush,  or heaven forbid something to put in her hair,  and she is off like a shot protesting as she goes.  As a side note,  all that pushing in the wheelchair is making her hands actually peel and callous.  Lotion, lotion, and lotion.  It does help,  but only if I can catch her.

We are one week from this coming Wednesday on her thumbs up to try walking.  I still need to get the walker from the medical supply company we are using.  We see her Ortho Dr on this Wednesday for a check up.  Fingers crossed he doesn't add any more time on wheels. 

We took the kids to the zoo last Wednesday.  It was a beautiful day.  Noah actually really likes pushing Kate,  and Kate really likes telling Noah where and how to push her so they make a great team.  It's interesting to cruise the world via wheelchair.  You notice ramps for the first time in places you've been a thousand times.  You also notice where there aren't any ramps, or wheelchair access restrooms, or horrible counter top heights, etc.  It's really been an eye opener for me.  I feel for people who spend their entire lives in a wheelchair.

Easter bunny came this morning and we had to make sure eggs were at wheelchair level for Kate to pick up.  She did pretty well for herself.  She is getting so strong.  She uses her arms to move from on chair to another now with ease.  I notice I repeat myself sometimes,  try to ignore it.   Or if you're getting old like me, you can thank me later for all the reminders.  If you remember.

The Marci update is that I started school this last week.  Tuesday and Thursday nights from 5:30 to 9:30.  It's a nurse refresher program for nurses who haven't worked for a while.  I've learned a few things so far.  First,  there aren't any jobs right now.  Nice.  Second,  I tried listening for heart and breath sounds through my stethoscope and can't hear a flipping thing.  If I concentrate really hard,  I can make out the faint evidence that I do indeed have a beating heart.  Bugger.  I was interested in Orthopedics, or the OR, or PACU.  I figured the OR thing was out.  Don't need Drs.  getting all angry because I can't hear what they want.  But PACU,  I thought I could swing that until I tried the stethoscope.  Can't take care of patients I can't hear.  I was thinking,  what if I am working on a floor and I hear a 'help' or 'nurse' or something else yelled out.  I would be looking around in circles, I can't tell sound direction any more.  Yup,  so much fun. I am looking into school programs for admin,  research, or informatics.  All pretty much require more schooling.

I think that's it until Wednesday.  Wish us luck.  Hope you all had a wonderful Easter.

Eye Surgery/Life Update

 We saw the eye Dr. at Shiley Eye Center today and discussed fixing her dislocated lenses.  There are arguments for waiting and for doing it now.  The waiting argument is that she now has healthy, functioning eyesight even if it is not the greatest.  There is always a risk with surgery; infection, etc.  So why risk the sight she has now.

The go ahead and do it argument is that she will have to have this surgery eventually so why wait.  Your brain helps in the process of getting the best vision possible and it's functionality decreases with age.  Does that make sense?  The older she is,  the less her brain will make the connections to help her eyesight.

Of course,  there is no guarantee that getting the surgery will help that much with her sight,  but it might help a lot.  Ugh.  It is difficult taking her into surgery when it's not an absolute must.  Nevertheless,  we have decided to go ahead and do the surgery.  I want her to have the best vision possible in the long run with her brain connections helping on that path.  She has to see a retina specialist before we can schedule the surgery to make sure everything looks good.  People with Marfans have a risk of retinal detachment.  And this is where my brain starts screaming and my thoughts turn decidedly un-PG for the reading audience.  Couple deep breaths, some chocolate, and a diet coke,  and I'm picking up where I left off.

The question is when?  It is done under general anaesthesia and there can be a several week to several month break in between surgeries.  She will have to wear an eye patch for 24 hours and then while she sleeps for a week or so after each eye surgery.  I am leaning toward end of summer or early fall.  A few months won't make that big of a difference at this point and I would like Kate to be able to walk really well before we go throwing another surgery on her.  Just my thought for today.  I may change my mind.

Kate is becoming an expert wheelchair pro.  She takes corners a little too fast for my liking and can wheel it up so the front wheels come off the ground just a little.  Scares me to death.  Trying to end that,  but Kate is one strong willed kiddo.  Her sides still hurt when I lift her and have her next to me,  but not enough that she really complains,  she just pulls her hip away from me so I know.  I think her legs are looking a little bigger and she is eating a little better.  She can move herself from the wheelchair to other chairs and the bed just using her arms. She is going to be one strong girl.  She likes going on walks on our street which really just means that I chase her while she tries to get the wheelchair to go as fast as she can.  Maybe I will lose some of my stress weight.  Yay, small victories.

She is having a tutor come almost every weekday and is doing alright.  It really depends on the day.  He is very patient, thank goodness.  I believe she is totally caught up with her classmates at this point.  We may even be ahead in reading The Trumpet of the Swan.  We have used bribery so often I'm beginning to wonder if I haven't ruined Kate all together.  I have started backing down on the bribes but it's not always easy with her.

The hospital bed is gone and my bedroom feels so empty.  Kate is now sleeping with me so I can monitor her attempts to walk.  It will be three weeks from yesterday before she can start with a walker.  We see the Dr. in two weeks, the 11th,  just because he is out of town the next week. Kate is hoping he will take an x-ray and give her the go ahead to walk. Here's hoping.

We get another cardiac echo in May to see if her aorta has become any more distended than it already is.  We also go in May and get an x-ray of her back,  the whole misaligned spinal column deal.  You know,  Kate cracks me up, makes me smile, and gives the best, sweet "I love you's."  It certainly helps get through all this.  People ask how Abby and Noah are doing and I never remember to address that.  Honestly,  they are doing really well.  I can see that they have grown up a little the last few months,  but I think it has helped put life in perspective for all of us.   They help out with less grumbling and understand when I'm tired because I've put in a late night with Kate.  They are awesome.  So blessed.

Cruising!

 Kate is doing really well.  We replaced her wheelchair to a smaller, more manageable one.  The first one had to recline for her, but this one is built for cruising.  She is an expert at corners and rolls away from us any time she thinks I'm trying to feed her. 

It's been strange to see her sitting upright.  She can actually get a little dizzy at times and need to lay back down.  On the bright side,  her hair doesn't get nearly as tangled and she isn't dreading getting it brushed. 

We pick her up to use the restroom and it is tricky holding her in a cradle position while trying to keep her legs straight.  She can bend her knees almost completely,  but she is so nervous it will hurt when we move her  we are still holding them straight.  It can also hurt her incisions on her outer thighs when we carry her.  I hope they feel better soon. 

She peeled off the last of her steri strips last night in the tub.  Now we have full view of her scars.  Oh, man.  Way longer than any of us thought they would be.  I would guess the ones on her outer thighs are close to 10" in length.  The one over her left hip in front is probably 7",  and her right lower abdomen scar is the smallest at around 5".  Kate is not too fond of them.  She sees how the older one is looking better than the newer ones and makes comments about them.  I just assure her that they will fade in time.  I am also going to look into those scar fading creams.   Fun stuff. 

I can't get her out and going just yet.  She did go to her school last Friday for about 40 minutes while they had a St. Paddy's day party.  She still got a little tired but it was great seeing all of her friends.  The kids were very sweet to her.  I really think she feels well enough to go out more,  but she is nervous about her legs hurting.  Another week maybe. 

Her legs are still super skinny,  but they are looking a lot better than the first few days.  All the dry skin is gone.  She has a nice, warm bath every day.  It's a two man job getting her in and out and usually has us all laughing.

Four weeks from tomorrow and we start on the walker.  In some ways that is forever away,  but knowing that we have seven weeks of this behind us is good. 

Goodbye Cast, Hello Legs

 Today was the big day, cast is off and tossed.  In some ways easier,  and some ways more difficult than I thought it would be.  We arrived at 1pm and sat in a waiting room for her turn to get her cast removed.  There was a child somewhere within earshot just screaming.  Luckily we had brought the iPad and ear buds so I quickly put them on Kate and she seemed oblivious to the crying.

Once it was our turn,  Kate was really nervous.  I have to say,  the guy who took off her cast was a bit of a....what's that saying when someone has zero personality?  I am completely brain fried,  it slips my mind.  Anyway,  I kept waiting for him to show Kate how the saw doesn't cut you, how easy it is, you know, something, anything reassuring.  Nope.  Nada from this guy.  Kate asked how you get the cast off and he just dead pans back, " a saw".  Really!  So you tell all the kids I'm just going to take a SAW to your leg??  At this point Leah, who is here helping today, and I start talking to Kate and telling her how ok it's really going to be.  She was a bit freaked.  Then he started up the saw and it was loud and scary sounding.  I held both of Kate's hands so she wouldn't reach down and get in the way.  The saw would kind of give and jerk as it went through the cast and Kate would just start yelling that she feels blood and it hurt.  Oh, I could have slapped that guy.  He needs a new job.  Anyway,  Leah leaned down and explained that it was just her legs are sore and that was what hurt,  the saw was not getting her.  I told her the same thing.  I had to look down and assure her there was no blood. 

 It was uncomfortable to get the cast apart,  and then there was all the dreaded, hated cotton.  I actually cut some of it off on her upper legs.  Some of the cotton stayed stuck on her leg as you can see in the pictures.  She was so very stiff and sore.  I did give her a Vicodin and a Valium before we went.

We slipped on real underwear,  no snaps, and lifted her gently back into the wheelchair.  Then Mr. Personality sent us to X-ray where we laid her carefully on the table and took 2 x-rays.  One of them required her knees to be a little bent, not a good idea.  I put on an apron and held her little knees as bent as she could get them. 

This picture is right after we got the cast off.  Her legs are so skinny and thin.  I mean, they were before, but now they just look sad.  Can legs look sad? She brought her stuffed seal this time as you can see sitting on her arm.  Thank goodness for her "stuffies" as she calls them.  She held on tight to both the seal and me while he was sawing away.



After the x-ray we went into a waiting room and Dr. Wenger and his fellow came and talked to us. I was trying to think of questions and things I wanted to ask, but they started taking off the bandages over her right leg incision and it hurt, Kate cried, and all my questions went out the window.

What I did get was that he was very pleased with her progress so far and that her incisions looked good.  He then gave us the bad news.  He wants Kate to be in the wheelchair with ZERO walking or weight bearing for 5 weeks instead of 4.  Major bummer.  And when the 5 weeks are up,  Kate is supposed to use a walker when she starts walking again.  He said walkers are just easier for kids,  more stable.  I did ask for a new "prescription" for a smaller wheelchair and he gave us one for the walker as well.  We go back in four weeks for a check up.

Kate sat in the van on the way home but with her legs straight on the bean bag I had in there and her chair laid back.  As long as we didn't bend her knees she seemed ok.  She did sing a little song on the way home, "I'm in soo much pain" but it was done with a smile and a cute little tune.  We stopped and got her fries and a shake which she gobbled up.

Since we've been home, Kate has had her first bath.  Two man lift and sit into the tub.  And then Kate couldn't sit herself up. She kept slipping back.  We gave her a wash cloth to sit on, but she still slipped.  Her muscles are seriously impaired.  I would have been more upset about this but Kate and I were cracking up.  All the cotton that was stuck to her legs is now gone.  I have put lotion on her legs several times and she is losing that dry skin like crazy.  It really bugs her that her legs feel weird.  Leah has gone to pick up better lotion.

Her incisions kill me.  They are so much longer than I imagined.  I knew they were there, but seeing that someone has cut my baby just hurts.  I try to act like they are cool when Kate is watching me,  but 8 year old kids shouldn't have these scars.  She has a great attitude though.  She is calling herself winner in the who has the most scars in the family race.  I just hate them.  I really do.

Kate is officially back on Vicodin at regular times.  She is uncomfortable, but not crying.  She is shifting around a lot trying to find the 'sweet spot', but it is eluding her so far tonight.  More Vicodin at 8.  Thanks for all the thoughts and prayers.  So good to see my babe's legs, even as skinny as they are.  Now to fatten her up, get pain control, and get those knees bending so we can get out in the world.

Friday the 9th

So tired today.  Kate didn't go to sleep until about 1:30 and I laid awake until 2am.  By 2:30 Kate was back awake yelling that her foot hurt.  She got a foot massage and some Motrin and we switched her position.  She woke up again three times before 6.  Same complaint about her foot hurting.  Just when I thought we were getting the nights down to a science,  it all comes back to haunt me. She is feeling fine now, during the day.  It's those night time demons we need to keep at bay.

Every day now we say,  today is the last Thursday we have to do in the cast.  Last Friday, etc.  We are so very ready.  Kate can stick her entire arm down her cast and has been pointing out that she can feel her hip bones.  She is such a sweetheart,  but at the same time the tired mom in me wants to yell that it's because she won't eat a dang thing I fix!  That pretty much sums up my rant for the day; tired mom,  skinny girl.

I heard back from the elementary school yesterday and our teacher is starting to come on Monday.  So excited for this.  I am hoping having a scheduled teacher time the next 4.5 weeks will go by faster.  And our fighting over homework between us will hopefully end.  I must confess that the last day she has actually been doing her homework a little better.  It's all about bribery.  One page of math for one large marshmallow.

Traci, my sister,  just arrived this morning.  She leaves on Tuesday the same time that Leah,  Ethan's sister, comes in.  Leah is going to help me Wednesday to take Kate to get her cast off.  Ethan is out of town for work that day,  of course.  Because that is how life goes.  Thank goodness for family members who show up to save my sanity!

We are super blessed to be in an amazing ward.  Dinners, visits, and gifts for Kate have really helped.  Love you all!

One Week to Go

 One week from today we go get this thing off and it cannot come soon enough.  Kate has literally had enough.  I have quit trying to feed her a balanced meal and have been completely satisfied if she eats a cookie with a little milk.  She said last night that she can stick her arm down her cast now.  It is looking a bit loose.  Thank goodness it's only one more week then I'm taking her out to eat so she can put some weight back on.



I have mentioned before that Kate has entirely quit doing homework for me, she did do a sheet of math today,  but overall we are failing at the home school thing.  I'm sure it's because of our situation,  but I have talked to the school and they are going to send someone to help her starting next week I hope.  I had to fill out papers and send them to her Dr.  to get filled out and signed so hopefully that will all come together. 


Kate is soo finished with this cast.  She is pretty good when she is awake to leave it alone,  but every morning the last few days I wake up to find pieces of cotton all over the floor.  She is ripping this thing apart at night.  Last night she started yelling like crazy and it was because she pulled out a steri strip and it had her blood on it.  Getting the cast off should be a party.


These are pictures of Kate ripping a couple days off her chain that is counting down until the cast comes off.  She can't just tear them off,  she has to then tear them up and throw them away.  I feel the same way. 

As bad as things seem I know how blessed we are to catch this when we did. It's a struggle and a fight and hard,  but Kate is still with us.  Perspective this week as friends of ours lost their little boy.  Counting our blessings and praying for others.

2 Weeks To Go

Kate is actually doing pretty well.  She is refusing to eat what I fix, and claiming to be too tired to do homework.  Sounds like a normal kid to me.  She is feeling a little better.  This last surgery was on her right leg and up until yesterday she never wanted to be laid on that side, but now she asks to be laid on her right side all the time.  She still takes something for pain at night.  Not sure if it's because she really needs it at this point or we found the magic combination to get her through the night and I'm afraid to change it.  Kate is already going to sleep between midnight and 1 am,  I don't need less sleep.  I have been turning the lights out earlier and earlier, but then she just stays up and talks to me for an hour.  Last nights discussion was about Star Tours and how you never see Luke or Han on the ride, but we do see Leia.  How weird is that?  Discuss among yourselves.

We are all counting down the days for this cast to come off.  My mom was telling me about how it was when my sister got her spica cast off when she was 6 years old.  I guess we have some pain to look forward to.  Her legs will be very stiff from being in the same position for so long.  Vicodin and many warm baths the first few days. 

The other night Kate was sad so I moved her over and got into her hospital bed with her. We ate popcorn and watched Jungle Book.   She had said it wasn't as comfy as her bed,  and I agree.  I think we are going to ditch the bed after the cast comes off and put her in bed with me.  I miss cuddling with her and it's really hard to cuddle in a body cast. And,  since she can't actually put any weight on her feet for four more weeks,  I think having her in bed with me will help monitor that she doesn't accidentally hop out of bed and start walking.  That's the idea anyway.  

Genetics

We finally got Kate's genetic test back.  Before I start explaining let me just say that it won't make any sense for two reasons.  First,  it's complicated.  Secondly,  I don't actually think I understand it. So there you go. 

We had Kate tested for the Marfan gene.  There could be three possibilities.  First,  she could just straight have the mutation on a certain gene that says, yup it's Marfans.  Second, there could be no sign of genetic mutations at all.  Third, there could be a mutation but not one that has ever been seen before.  We came up with option number three.  There IS a mutation and it IS in the area of the DNA that the Mafarns mutations are normally found,  but is not a mutation that has ever been seen before.  I guess mutations in DNA get put in a big system to be matched with other people who have the same mutation.  The particular mutation has never been documented before which also happens all the time.

So what does it all mean?  Well,  Ethan and I are going to get our blood tested for the same mutation.  If they find it in one of us,  I think it's back to the drawing board.  If they don't,  then I think we can decide to get the other kids tested.  See,  I'm not really sure.  Most likely it is just Kate and she got mixed up while she was in the oven.  One of those things.  Those really sucky, rotten things.  So there you have it. 

If this is totally screwed up I'll do a follow up. 

The Waiting Begins

So now the waiting begins.  Noah made Kate a paper chain counting down the days until the dumb cast comes off.  Kate is making lists of things to do once we are only in a wheelchair with no cast.  The Zoo and the animal park in Escondido being two of them.  Here is a girl into animals. 

She does pretty good during the day,  but the nights can be wicked.  I think she is half asleep and tries to move only to find out she is stuck tight and freaks out.  She wants the cast off now, she hates the cotton inside, etc.  She reached into her cast a few nights ago and started ripping out the cotton.  I can now see the steri strips on her right abdomen incision.  She was half asleep when she did it,  and I am sure I would do the same thing.  Now being very careful to keep that area dry.   Distraction and drugs are our friends in this situation.

I am happy to report she has slept through the night the last three nights.  Good thing too, because I was feeling newborn baby tired.  The other night was so sad.  Before she went to sleep she said she missed her old life.  She just wants to walk again and go downstairs and do all the things she used to do.  Big alligator tears running down her cheeks just killed me.  We talked for a while and tried to find good things to think about.  She eventually went to sleep.  Broke my heart.

She has been getting some really fun stuff from people.  This is a picture of her with a gift basket from people at Ethan's work.  Now she really is princess Kate. 

She is eating a little better,  thank goodness,  and she is able to sit up a little better.  Her incision on the right abdomen has been more painful than the left side but her sitting up better tells me it's starting to feel a little better.  Please, please let the time fly by.  Her appointment to get her cast off is March 14th.  Praying for her bones to heal quickly. 

Home Again!

 The last day at the hospital we actually got her to eat an ice cream cone,  well most of of it anyway.  It's the small things.  We got the bean bags and blankets ready and put her in the van.  No easy feat with this big, heavy cast.  She did really well this time and got comfortable right away.  She had to have her kitten, Crystal, and the iPad for the ride home.  The hospital gave her a flower on her way out the door.  Just like two weeks ago, she crashed out on the ride home.  She takes that pink blanket Nana made her everywhere she goes.  It's super soft.

Once we got her back in her hospital bed her real cat, Cleo, came to see her.  Cleo only leaves her side to go eat.  Every time we look,  Cleo is on the bed with Kate.  Look at the smile on my girl.  Any cat that can do that is pretty cool.


Back to the same old struggle. Trying to get Kate to eat something so we can stay on top of her pain.  She is currently having a little "Princess and the Pea" situation.  Every wrinkle is uncomfortable, the sheet is not covering her toes just right, etc.  Not that I blame her,  it would drive me crazy.  Now we count down the days/weeks until this sucker comes off.  I am trying to be optimistic by thinking that by Tuesday we will only have three weeks left.  Only,  what a joke. 

Thanks again for all of the love and support.  We are feeling a little sleep deprived and there's always some level of stress.  I am seriously hoping that having her home,  and knowing that both surgeries are done,  will help with the stress level. 

Hospital Stay

We ended up staying in the hospital one day longer than the last surgery.  I think she was on so much morphine that she just couldn't get her appetite going.  On the bright side,  her pain control was fantastic. 

These pictures were actually taken a day apart.  She really lit up when the dogs came to visit.  What a great hospital.

This time around I stayed during the day,  and Ethan took night patrol.  Night can be tricky because she becomes a little disoriented and hates that dang cast.  Here is what Ethan said about her last night at the hospital:

The sun is up and my angel is asleep, hopefully for the last time in the hospital. The worst drama lat night was getting her to eat a small graham cracker. You would have thought we were asking her to undergo surgery again. Actually, she probably would have preferred that. After 30 minutes of negotiation (aka threatening, pleading, reasoning, drugging, ...), she finally agreed to eat 1 Sun Chip. After that torture, the night was smooth. Complained a little about the cast at one point (Valium is a good thing), but managed to get some sleep.

Here is a follow up to that post:

 Update -- Kate woke up when the nurses came in. She had a big smile and gave us a "good morning." The nurses asked how she slept and she said "great, but I had a bad dream -- I dreamed I was feeling sick and had to eat..." Smiling, happy and relaxed so far this morning.ti

She makes me laugh.  We discontinued the morphine and started her on Vicodin by mouth.  She has to eat with Vicodin or you get sick to your stomach.  We tried everything.  I did find her a happy meal next door and she got down 2 nuggets and a couple fries.  Never has eating junky food made me so happy.  She has been getting stuffed kitty's from people and she names and loves them all.  Thank you so much.

 

The Day After

Kate is still on a PCA which is running continuously but at a lower dose than yesterday. She can now press her PCA button and get an extra boost of morphine. Her pain, while still present, seems to be better than last time. Although, two weeks ago she was also much more alert and able to move around a bit more. Morphine is great for pain, but a killer on the diet. This girl has eaten nothing. I bribed, begged, and pleaded for one bite of a roll, which she did eat. She now feels like she has upheld her part of the bargain and will have nothing more to do with food.

Her cast is gigantic and heavy. Her Dr. said that we can use the bar between her legs to help move her around. That used to be a no-no. She still has her drains in and 'wires everywhere' according to her. I had hoped we would be going home tomorrow, but it's not looking good. We need to be eating, off the PCA and onto oral meds. We also need to get her up to a wheelchair and transferring with our help.

I'm tired. Seriously. I got 6 hours last night, but could fall asleep standing up if I weren't listening for Kate. Not the easiest thing to do for the slightly deaf. Hoping for a good night. If anyone is throwing a prayer out in Kate's behalf, we need pain control and an appetite. Thanks.

In Our Room

We made it to our room. Not shared this time which will be nice. I neglected to mention that Kate had a transfusion in the last post. I was having a one track mind about seeing my girl. She was low from the last surgery and they did a blood draw right before she went in to surgery to cross and type in case she needed a transfusion. I literally had to hold her arm down so they could stick her with a butterfly, smallest needle ever. She went much more willingly into surgery.

I wheeled her in and sat next to her in her wheelchair while she proceeded to tell the anesthesiologist that the gas mask had something sticky on it and it needed to be cleaned. Here is a girl who speaks her mind. She was very calm this time as they held the gas mask on. So much better than two weeks ago. She still did her little arm spasm and giggled and then went to sleep. So much easier on mom when the patient is willing.

Things seemed to take a little longer this time. Three hours before we could see her. Finally got walked back to the PACU with a nurse who told me how cute and funny Kate was being. When I saw her, she had a red teddy bear in her arms courtesy of the hospital for Valentines Day. She did tell me that her leg hurt and that one leg was heavier than the other, but not crying like last time. She fell back to sleep only to wake a few minutes later saying that we had spelled her name wrong. The nurse and I looked at each other and the nurse kind of asked, "spelled your name wrong?" Kate opened her eyes, looked right at the nurse and said, "yes, in my dream we were painting and you spelled my name wrong.". The nurse apologized and Kate drifted back into la la land.

Kate is mostly sleeping, but when she is awake she is still complaining that one leg is heavier than the other. Not sure how we can fix that. Hopefully that sensation won't last long. She has a drain in her right leg like last time. She is on a PCA that is currently continuously pumping her full of morphine. Let the nose itching begin.

Out Of Surgery

Kate is out of surgery and is still in recovery. I haven't seen her yet and I'm waiting impatiently to do so. Dr. Wenger told us that everything went very well. He said that we will take the cast off in 4 weeks, 2 weeks shorter than we thought, and then they will take an X-ray and if everything looks good the cast will stay off. Yay!! If not, they recast her at that time. Not yay. Pray for fast healing bones.

Once the cast is off she will go 4 weeks in a wheelchair with zero touching the ground with her feet. He says if she does touch the ground we have to recast. Seatbelts, duct tape, I will be prepared to keep her off her toes. Hate that cast.

More after I have seen my baby, which is not happening soon enough.

Right Leg Tomorrow

Going in bright and early tomorrow to Children's.  Surgery is scheduled for 9:10,  which means we will be starting around 10:30-11.  I told Kate I was going to shampoo her hair and get her ready for surgery tomorrow and she said she would much rather have surgery than have me brush her hair.  Poor kid is getting both! 

I will be updating the blog tomorrow as Kate comes out of surgery.  Hoping for sleep tonight.  Small goals, small steps.  

Sunday Morning

Just when you think you've hit your groove place,  things go to pot.  Have I mentioned how much I hate this cast?  I'm probably second only to Kate.  She couldn't sleep last night because she was itchy inside her cast.  We gave her a little Benadryl and got her thinking about something else and she finally drifted off.  Only after telling me how much she hates her cast and wants it off.  I told her we will have a ceremony when the the stupid thing comes off and get rid of it good.  I'm feeling funeral pyre ala Darth Vader and watch the dumb thing go up in flames.

We got things wet inside again, so much dang fun.  Blow dryer out in full force this morning on the last little spot. Called the Dr. on call just so they know this cast is coming in wounded on Tuesday. She said things will be fine until Tuesday and to blow dry and pull out wet cotton.  Been there, done that.  I have pulled every bit of cotton out of this sucker that can come.  The only bright side is I think we have learned a lot and will, hopefully,  keep the next one dryer.


Time for church, Kate is staying home again this week.  I think she will go in a few weeks.  Her wheelchair is just so big since she has to be mostly reclining,  it's going to be brutal getting her anywhere without some difficulty.  Time to chill and be off for church.  Thank you for all the continued support, meals, toys, visits,  blankets, PJ's, and prayers.  I can't tell you much they all help.

Goofy Girl

One week from tomorrow we go in for the right leg.  In some ways I wish it were tomorrow.  I just want this over with.  Pretty sad considering it's just beginning.  Kate is doing great 90% of the time.  There have been a few times when she has been very tired or having some discomfort that she will ask us to please take her to the hospital for them to remove her cast.  I tell her that we have to wait for her hip to heal,  but she says it never hurts to ask.  So heartbreaking.  I hate that dumb cast.  Using a bedpan is a joke.  She is doing better than I am the last couple days, if you can't tell.

Kate can move around a lot better now and she is using the trapeze above her bed like a champ.  She jokes with us that she is going to be very strong using her arms like that every day.  Getting the hospital bed was inspired.  She can move around and get herself comfortable in positions that I would never put her in. 

One issue we are having is that Kate won't eat.  Nothing sounds good or tastes good.  I had one hour the other day to run to the store and I'm sure I looked like a crazy person throwing anything Kate has ever eaten or craved in the cart.  Sadly, it was mostly donuts, chips, ice cream, etc.  I'm not being picky right now.  Food is food.  I'm not sure what we haven't tried, but I'm open to suggestions. 

Kate's schedule is also screwed up.  She is sleeping in until 10:30-11 and staying up until 1.  Can't win.

These pictures were taken right after we did a shampoo in the kitchen sink.  Yay, for that.  Clean hair feels great.  Kate was acting like her usual goofy self, I grabbed the camera and she hammed it up. 

Clothes are interesting as well.  I bought some size 14 sweats and some size 14 shorts.  The sides of the shorts have been cut and velcro put on in preparation for the next cast.  I think I will want to burn these few outfits when we are done.  Thank goodness the shirts can be interchangeable.  

Thanks to everyone who have sent activities and gifts for Kate.  It really lifts her spirits and mine.  Thank you. 

Home!

Going home took a little effort.  Kate and I went last Saturday to learn how to strap her in using a vest so she can lay down across the seats in the van and still be belted in.  It involved bean bags, blankets, and pillows.  She wasn't going anywhere.  Of course, by the time we got her ready to go she was tired and every blanket was wrong and she just couldn't get comfortable.  It's so hard to not be able to make it better for her.  That has been the hardest part of the last few days.  There is only so much you can do and then you just pray she will find some peace and comfort. 

Once we were on our way she fell asleep.  She slept in the van for a couple of hours outside in our driveway while we watched.  Good thing we live in San Diego where it was perfect weather to do so.  She woke up 15 minutes before her hospital bed arrived so we fed her a little in the van and then transferred her inside to her own bed.  She was very excited to see her cat, Cleo.  She missed the cats in the hospital.  She did a few craft things,  watched Aristocats, and ate dinner. 

Tired now. The second day without sleep is always the worst.  Glad to be home with bed and wheelchair for Kate. 

Post Surgery at Rady's

 The second day,  one day post op, Kate had a rough time getting comfortable.  The cast was uncomfortable,  the sheets have wrinkles in them,  there's something in her cast,  and she was itchy, itchy.  She was on a PCA with morphine and that morphine made her itch.  Mostly her nose.  I could always tell when she pushed the button,  she would start itching that nose.

She brought her giraffe with her from home and has held onto it pretty tightly the whole time.  Our Bishop stopped by with a darling little bear,  and a teacher from school sent a little pink dog.  She pretty much had them all with her the whole time.  



You can see the cast goes up to about her rib cage and all the way down to her ankle.  It wraps around her waist.  On February 14th, when she has her next surgery,  this cast will be completely removed and replaced with one that goes down both legs to the ankle and there will be a bar in between.  

She did get up today in a wheelchair.  That was the last thing she had to do to get the OK to get to go home.  She had already moved from her IV meds to oral ones.  They tried a couple different pain killers and she ended up with Vicodin and Valium.  I think she may be a little like her mom.  I can take Vicodin like it's Tylenol and it doesn't make me tired or anything.  Kate was up with Ethan until 2:30 am playing games and watching movies. 

The hospital is wonderful.   They have a room where kids can go play and do crafts.  Kate became expert at painting while laying down in her wheelchair.

The hospital also has a resident dog, Snoop Dog.  Way cute and Kate just loved petting him.  I'm sure all the kids do.  Kate was having so much fun the last few hours that she said she was excited to come back to this floor after her next surgery.   I guess my plan for drugging her up and kidnapping her has been thwarted. 

Kate is in this picture holding the TV remote/nurse caller.  She was really in charge of things by the time we left.  She called down for her nurse when it was time for her meds or if her PCA was beeping.  She still had some getting comfortable issues today.  I think they may last until April when the cast comes off.

Oh, What a Night

That's a Jersey Boy reference, Oh What a Night. Or a Four Seasons song depending on your preference. Can't exactly say there was much sleeping going on last night, a few "naps" we'll call them. Nurses got to check those vitals, give antibiotics, reposition patients, etc. all night long. We had a little problem attempting to use the restroom via bedpan and ended up getting a catheter. Not fun to get, but ended up being a good way to go. Dr. Not that happy about it so it will likely go later today.

We are sharing a room and it seemed that whenever we were doing well, the other little girl would start crying. I am a terrible person, I would think how tired I am whenever she would cry and Kate would always ask if the other girl was going to be alright and if we needed to call the nurse for her. It was my second thought. Maybe that just makes sorta rotten, not totally rotten. Kate is a far better person than I am.

Struggling this morning with itching and pain. Bishop came by with a stuffed animal, a cute soft bear, so she loved that. Off to switch positions and try the oral meds. More later.

Rady Children's Hospital

It's been the longest day.  I can't even imagine starting this post. I was thinking last night that they need counselors standing by to tell you everything is going to be fine,  and people giving you a massage while you wait for surgery to be over.  No such luck.  I'm sitting with Kate in her room at Rady's.  We arrived at 7:45 this morning and were scheduled for surgery at 9:50.  We got Kate's paperwork done, got her dressed in her pants and shirt,  and then we waited.  She didn't actually go in until 11:30.  Figures.   I have been nervous about her going under,  dumb I know,  but I'm her mom.  I ended up going in with her into the operating room.

The anesthesiologist was very sweet and gave Kate his iPhone with Tangled on it to watch before we went into surgery.  She was still watching it as we walked into the operating room.  As soon as Kate saw the room, the Drs, nurses, and equipment, she panicked.  I don't blame her, very intimidating even for someone like me who has been on the table more than once.  We ended up putting her to "sleep" while she sat on my lap.  They used strawberry smelling gas.  At first Kate was fine, but as soon as she could feel something wasn't quite right she got a little nervous.  The gas makes your body move and jerk a little and also makes you laugh.  I'm sure it was a little scary for her.  I held her and whispered in her ear that it was going to be ok and that this was all normal, that I was there and loved her.  What do you say at a time like that?  Everyone in the room seemed concerned about me.  I almost blurted out that I have worked as an RN so I was fine,  then Kate went limp and that was that.  I helped lift her onto the operating bed,  gave her a hug and a kiss and cried my way back out to the waiting area.

The surgery itself took pretty much the whole 2 hours.  Dr. Wenger met us in a consultation room and told us everything went fine.  He said she did not need a transfusion this time,  but may need one on the next surgery in two weeks.  I can't even go there mentally.  Anyway,  he also told us about the drains in her leg and how the cast was situated, etc.  I am glad I have some experience as a nurse,  I imagine this could really freak some people out.  It's so much harder when it's your own baby,  but I feel a little more prepared than some.

About 20 minutes later we were buzzed to recovery.  Just one of us could go in and it was me.  Ethan is being good and realizing that I NEED to be with her.  She looked,  and still looks,  pale.  She was complaining of pain when I got there and wanted her glasses.  Poor blind kiddo.  They gave her an extra bolus of medicine,  a morphine family drug,  and she slipped off for a few minutes.  She was hugging her stuffed giraffe we brought the entire time. In one of her awake, but groggy moments, she told me she didn't want to have the other leg operated on.  Dang.  She continued to complain of pain off and on.  I think we have a pretty good handle on it now.

We are now up in her room and I can tell she feels a bit better because she is complaining of hunger instead of pain.  We're going slow on crackers and water and hopefully will have something better in a little while.  She says her casted leg is hot,  but the room is freezing.  It's a off and on with blankets and covering one leg and leaving the other.  We were initially told two nights, but we are probably looking at three.

I'm tired and my long night hasn't even started yet.  It helps that Kate is so sweet.  Please and thank you with everything the nurse does for her,  even when she's in pain.  Couldn't ask for a better baby.  Your youngest is always your baby, right?

I have ordered a hospital bed with a trapeze bar for home.  After talking with someone else who's been in this situation,  I decided this would be convenient.  Kate can lift and re-situate herself instead of relying on someone else.  A wheelchair is also coming.  This is if my insurance approves the bed.  Wheelchair has already been approved.

I have been feeling a little Job like lately and have been repeating two scriptures to myself often.  The first one is Job 13:15.  "Though he slay me,  yet will I trust in him."  Keeping faith even though I'm feeling a little picked on.  I wish it were me being picked on,  that would be so much easier.

The second scripture is 2 Nephi 2:25 "..men are,  that they might have joy."  I am maintaining hope that there will be joy somewhere down the road.  I need a big dose.

Thank you for all the wonderful thoughts and prayers.  They have lifted us up and strengthened us all day.  We are truly blessed to have such wonderful friends and families.

Upcoming Surgery

With surgery coming up next week,  and Kate never lets us forget,  we are taking a "family day" and going to Disneyland.  We are going to stay at Paradise Pier Hotel,  which should be fun.    We are staying up there to play Thursday and Friday.   We all love Disneyland and you seem to forget your troubles once you walk through those gates.  That's what I am counting on anyway.  I'm doing biggest loser with my family,  and I'm already losing.  Apparently I'm a stress eater.  Who knew?  It will be soo much worse after a day at Disneyland.  Battered corn dogs and ice cream cones, here I come.  It's going to be warm, high 70's,  so the ice cream cone is totally going to happen.

We FINALLY  got the lab slip to go get Kate tested for the Marfan gene.  I'm taking her in tomorrow morning.  If she tests positive then the rest of us will be tested.  Her genetics Dr.  thinks that Kate's Marfans is a genetic anomaly.  I hope so.  I cannot bare to think about having any of this going on with one more child.

Surgery Dates

We saw Dr. Wenger on Monday and now have the dates for Kate's surgery locked down.  She is getting the left leg done on January 31,  and the right leg on February 14th.   Happy Valentines Day, right?

Dr. Wenger went through all the x-rays and pictures with us and showed us exactly what was going on and what he thought we should do.  It's all kind of long and complicated but here's the short of it.  Kate's femur heads are pushing up into her pelvic bone right near her growth plates,  which will only make it easier for her femur head to push through as the growth plate area is not strong.  I am telling this in very simple terms,  it's easier for me.  Anyway,  they will be taking a triangle section of bone from each thigh and using it to reinforce the pelvic bone.  At the area where they take the bone from the thigh they will be placing a steel plate.  If you look at the photo you can see the triangle piece and then a kind of drawing of what the steel plate will be like.  The plates will be removed in a couple of years.  Yay, more fun to look forward to.

Secondly, your femur heads naturally go into your pelvic socket at a kind of angle that puts pressure in the socket.  This is great for non-Marfan people whose bones are not soft,  but stinks for Kate.  They are going to realign her femur heads so they place more pressure going up instead of at an angle.  That way the pressure will be on a stronger surface where the bone is not so thin.  This will not interfere with her range of motion.

We had the option of spreading the surgeries out in several different ways.  We have chosen to do them 2 weeks apart which decreases the total time in the cast and wheelchair by about a month.  First cast will go all the way down the left leg to right above her ankle and up around her hips.  When she gets the second leg done,  the cast will go to both ankles and there will be a bar between them just like Mandi's cast was.  She cannot put ANY weight on her feet for about 10 weeks all together.  The cast will stay on 6-8 weeks depending, and she will be in a wheelchair for 4 weeks after the fact.  We are just aiming that by summer Kate will be back to her regular self.

Kate had a couple of difficult days with the news but seems to be alright now.  She will still say she doesn't want surgery,  but after the Dr.  explained what may happen if we don't do the surgery,  she is a bit more compliant.  I guess people with this condition,  if not caught early enough and treated,  can end up getting hip replacements in their late teens early twenties.  Also, pain and arthritis,  difficulty walking, etc.  He did explain that this was fairly rare and gave us some info to read about procedure.  This SHOULD fix things until Kate is around 50 years old or so.  She may need a hip replacement at that age.

That's a lot of information.  Probably more than anyone needed but it should cover everyone's questions.  Maybe.  I hope. 

Oh,  I'm putting off school for a few months.  I think I have a solid nursing job right here at my own house, which I am fine with.  I'm kinda partial towards the patient.