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.