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. 

Scheduling Life

Today has been all about shuffling schedules so Kate can go on a field trip.  Her field trip to the San Diego Zoo is Friday the 9th.  She was supposed to go and see her cardiologist that morning.  I called her cardiologist to see when they could possibly get her in so she could go on this field trip.  The earliest appointment was in February unless I could make next Tuesday, the 6th,  at 3pm.  Tuesday,  at exactly 3pm,  was when Kate was scheduled to get her contacts fitted.  She is soo excited to get her contacts.  I called Shiley Eye Center and the earliest they can reschedule her is the 12th.  That is six days difference.  That doesn't seem like a lot,  but for some reason today,  it felt like the world.  I sat in the parking lot of the grocery store considering,  field trip vs. contacts.  Field trip eventually won out.  And then I cried.  Stupid, ridiculous, annoying,  all of those things.  My logic was screaming at me to pull it together and get into Sprouts,  while my heart felt like it was literally breaking because I didn't want to break it to Kate that her contacts will have to wait 6 more days.  Finally made it into the store only to lose it again when Abby's YW leader called and asked how I was doing. I'm sure she wasn't expecting what she got.  Sorry,  Holli.   Just when you think you've got it together, obviously,  not so much.

Here's the schedule for the next couple of weeks.

Friday,  December 2.  Dr. Heichel at Shiley Eye Center.  He is watching her dislocated lenses and will likely do surgery when the time is right.

Monday,  December 5.  Dr.  Wenger at Rady Children's Hospital.  He is an pediatric orthopedic specialist who will be looking at her femur issues, protrusio.

Tuesday,  December 6.  Dr. Grossfeld at Rady Children's Hospital.  He is her cardiologist.  He will be checking on her tolerance to the blood pressure medicine she is on to help slow down the dilation of her aorta.  He will likely put her on full dose now.  

Monday,  December 12.  Dr. Tasto at Shiley Eye Center.  She will be fitting Kate with contacts.  Yay!  I hope and pray that she is able to wear contacts.  Her vision will be improved and she will be so much happier.

That's it for now.  I actually bought a planner yesterday.  I forgot to pay the rent at my business last month.  Yikes.  If it's not on a list or it doesn't beep from my phone,  I never remember whatever it is I should be doing,  or buying, etc.  As a matter in fact,  I have a timer on my phone to remind me to give Kate her medication every night.  Kate is actually really good at remembering.  She reminds me more often than my phone.  She likes to show off how easily she swallows pills,  thank goodness.

For a handful of reasons,  I have decided to put that RN license I keep current to use.  I am going to take a refresher course after the holidays,  and hopefully find some way to get clinical hours.  Someday,  after I have worked some nursing positions to get experience,  I would like to end up in same day surgery or somewhere in orthopedics.  Kate will always need some sort of nursing skills in her life,  so wish me luck.  Actually a bit nervous.  Hopefully,  there are a few brain cells left in me.

Stages of Grief

Ever since I found out about Kate's spinal and femur issues,  I have found myself wheeling and dealing with God.  At first I was asking for all of it.  Just let me take it all.   This is actually a very selfish act for me.  I am too weak to watch my baby go through this.  So, after I didn't hear back, I decided to changed tactics.   I started asking to just give me the pain.  I got thinking that maybe this was Kate's trial in life and I shouldn't be messing with it.  But,  surely I could take the pain that Dr.'s seem to be sure is coming.  I assured Him that I was truly thankful that she wasn't having any pain yet,  and that I was also very thankful she was running around like she didn't have a care in the world.  And just a few hours ago it occurred to me that I was bargaining,  as in stages of grief bargaining!  I can be a little slow,  so this isn't a shocker,  but I was still surprised. 

When I lost my hearing, got tinnitus, migraines, etc.,  I never once placed blame on the big guy upstairs.  I certainly do not do that now.   I understand that we are given bodies when we come to this earth and that they are flawed.  That they can become flawed,  broken, and plain messed up.  I have even started to wonder if I was given my physical issues in some part to make myself more prepared to help Kate through this.  I have a friend,  who may read this, hi girl!,  who has told me that she has blamed God for the fact that she has not been able to have children in this lifetime.  I hope I conveyed to her that despite the total suckiness,  yes I am using that word,  of my health issues,  I in no way blame God.  In fact,  I wouldn't take it back for anything.  I have grown more in the last two years than in any other time of my life.  Ok,  I'm rambling.  I guess I just hope that I can convey to Kate,  as she grows older,  that this CAN be a blessing.  That she can take this challenge and use it to her advantage.  It's a HUGE order,  and I know sometimes she is just going to need to be angry and sometimes she's going to need sympathy.  And sometimes,  if she's like her mom,  she's gonna want to hit or throw something.  But,  I know she has many people in life who will help her through this.

It looks like I have a ways to go in the stages of grief.  And each time they give us something new to deal with,  I have to start all over again.  And just as a last thought,  because it never hurts to keep asking,  I will still take her pain.  And if you want to take my tinnitus away,  I'm cool with that too.

Kate and Thanksgiving

We all went down to San Felipe, Mexico for Thanksgiving and had a great time playing with some cousins.  These cousins actually live in Utah and we got talking about meeting up during Christmas to go skiing.  You know,  so many conversations and decisions are now affected by this new way of thinking with Kate.  It would probably be a bad idea for Kate's eyes and back to be skiing.  Bummer.

We went down to the beach and picked up a ton of shells and sand dollars.  We had to hike up a hill to get back up to where we parked.  It was enough of a hill that you got a little breathless.  I walked with Kate and reminded her to just go slow.  I didn't mention her heart or anything, I just asked her to keep me company.  This is complicated.  I don't want her to feel like her whole life has changed,  but her whole life has changed!

On a positive note,  we heard that her contacts are in.  Yay!  I'll call Monday and make that appointment.  Kate is very excited.  I hope they work.  Cross all your digits,  fingers and toes!

Kate and Protrusio

More information from Kate's Dr. visit today.  After explaining the vertebra issues,  the Dr.  moved on to her hips.  You may be able to see on the left hip,  right side of the x-ray, he did some light markings.  Protrusio is when the femoral head starts to enter the pelvis.  This can cause some decrease in her range of motion among other things.  I can play the nurse here,  but I am feeling more like the mom,  and the mom isn't feeling technical. Usually causes pain and can require surgery to fix.  We are going to see a Dr. Wenger on December 5th.  He is a pediatric orthopedic hip specialist.  I was told that there were things we could do to help stop or slow this down.

The Dr. tested the range of motion in Kate's hips and had the nurse write down a bunch of numbers.  I heard a 70% in there somewhere and I have no idea what it could mean.  I was kind of in a daze when they started doing that.   By the time the Dr. finished,  he could see that I was fighting the tears,  and  I didn't want to lose it in front of Kate,  so he was nice enough to tell me again that Kate's scoliosis was within normal ranges and there was nothing right now that was an emergency.  We just needed to watch things.  But,  I needed to see Dr. Wenger as soon as I could. 

Yes,  I took Kate to McDonald's again.  She asked.  I was seriously about to give this girl anything she wanted at that moment.  If she wants some fries and a cookie,  done.  I was good though,  didn't get a diet coke or an ice cream cone for myself.

Kate and Spondylolisthesis

What started out as what I thought would be a piece of cake visit to the Dr. turned out to be kind of a mess.  We thought that we were getting a base line measurement of a slight case of scoliosis for Kate.  Actually,  he said her scoliosis is currently a non-issue and is within normal ranges. Instead we are walking away with two different things. They will be in two different posts.   First, Kate has what is called spondylolisthesis, or what her Dr. called 'spondy' as you can see on her x-ray.  You can see on the close up view that her vertebra is supposed to be lined up with the one above is and is currently 6mm off, or 25% off from where it should be.  They asked her a few times if she had back pain.  They also asked if she had problems using the restroom. She actually laughed at that one.  Thought that was a pretty silly question.  We go back in 6 months for another x-ray. The information online is fairly gloomy,  I'm choosing not to read it.  The next post is worse.   I put the information that the Dr.  gave me so you can read it too.   

Marci's Hearing

It's been a year since my last hearing test,  and no big surprise,  I'm still deaf!  My hearing ear, left side,  is still at normal levels,  no big change.  My deaf ear has actually gotten worse.  Who knew it even had that capability?  It has basically gone from completely useless to even more completely useless.  Those are are the Dr.'s words,  not mine.  Tinnitus is still full throttle,  he gave me an anti-depressant I could try to see if that helps.  Funny,  the one I've been on for migraines the last two years hasn't done anything for the tinnitus.  He thinks I should up the dose.  I could very quickly become an incredibly happy person.  You are warned.  I could almost believe that, but I know what my next couple posts are going to be about.  He also gave me a prescription for a diuretic that is supposed to help with the sensitivity to sound. Too bad there's not a drug out there to get me through Dr. visits.

New Medicine

Kate had her blood drawn yesterday to check her kidney and liver functions before she starts her new medicine.  We were walking into the clinic and she asked if she could be put to sleep to get her blood drawn.  She is my bravest girl,  she volunteered to go first to get her flu shot!  She was so nervous the phlebotomist had to really talk her into it.  She didn't cry or anything,  but it was sad to watch.  After he got her to give him her arm,  she was fine.  As a matter in fact, she couldn't tell when he took out the needle.
The cardiologist called today to tell me the results were normal so we can go ahead and start her medicine.  It is Losartan,  a blood pressure medicine.  Her Dr.  prescribed it in liquid form and after the second pharmacy told me they couldn't get it in liquid form,  I just got the pill form and prayed Kate can learn to swallow pills.  It took two times trying but she got it down.  And she was quite proud of herself.  Take that, Aunt Tani!  The only real side effect is that it could make her sleepy. This medicine is supposed to slow down, or stop entirely,  the further dilation of her aorta. 

The Cardiologist

Our cardiologist walked in and gave us a report on each of the kids.  Here's the deal.  Kate's aorta distention is currently a 3.11 cm.  When it gets to a 4.5 to 5 cm they start talking heart surgery.  He did say that he has never seen a child who has needed the surgery.  It's usually the adults.  It apparently takes a long time for it to reach a 5. Kate will be getting her blood drawn on Monday to check her liver and kidney functions before she goes on a medicine that is supposed to help slow down the aorta distention.  It is a blood pressure medicine that has been used for Marfan patients for a few years but is still in a trial phase.  I'll give more info on that medicine once I fill the prescription.  We go back to see the cardiologist in a month to see how well she is tolerating the medicine at a lower dose.  If everything looks good, he will start giving her the medicine at it's full strength.  I am assuming we will go in again and see how that is working.  We will also schedule her next cardiac echo when we go in next month. It will be six months from when she had her first one.

We got a report on Abby's cardiac echo as well.  I was told by the sonographer who did her ultrasound that she had a prolapsed mitral valve,  completely unrelated to Marfans.  I have basically spent the last two weeks thinking that Abby has heart issues as well.  The cardiologist told us today that it is so slight that he is not worried at all.  It's apparently a non-issue.  Being told that,  and really knowing that, are two different things.  I am trying to convince myself that he is right.

Noah, my one kid I thought would breeze through this,  actually has a slightly dilated main pulmonary artery.  And now we know that Kate does as well.  She actually has both the left and right pulmonary arteries dilated along with the main pulmonary artery.  So, in Noah,  this could be related to Marfans or it could be something completely different.  The Dr. is anxious to get the blood test back to see if Kate has the gene for Marfans because it will help figure Noah out.  That's the test that we are still waiting for our insurance to give us the go ahead and then it takes 8 weeks to get the results.  Either way,  Noah will be having another cardiac echo in a year to follow up and see if it's getting any bigger.  It's just barely off of normal, but given Kate and her heart issues,  we are going to monitor it. 

The kids are taking all of this information like troopers.  I think because I act like it's all good,  they believe it.  Good thing I am such a skilled actress.  I just keep hoping they don't catch me being teary and sad.  I have amazing kids.  So blessed.

Marci's Cardio

Not unexpected,  but good to know.  My cardiac echo came back normal today. I would throw in a Yay but I'm not really feeling it.  You all Yay for me.  I must need chocolate.  It is good news.  Now we go see how Abby and Noah's turned out on Friday.

The Van

The New Van

I promised a picture of the new van so here it is.  Not much to do with our health, but it makes us all a little happier and that means something.  At least now we will cruise to Dr. appointments in style.  Well, as in style as one can be in a minivan.  No Dr. appointments until next Friday.  Yay!

Kate's Contacts

I took Kate back to Shiley Eye Center at UCSD and she had all the usual tests that she loves to much.  Tell me what you see,  which is most clear 1 or 2, etc.  This was a contact fitting and our insurance doesn't cover it.  Fun.  Here's the deal.  Her contacts will be there in about 2 weeks.  They are specially made because her vision is so stupendous.  They are supposed to last a year.  They cost $150 each,  that's $300 a year,  which isn't too bad unless she starts losing them left and right.  Still not sure if our vision plan will cover any of the contact cost.  So, we will go in and the Dr.  will put the contacts in and make sure she can see and that they fit correctly.  If they don't,  we place a new order and wait another two weeks for new contacts.  If they do,  they teach Kate how to use contacts.  I wore contacts for years so I am hoping that I will be helpful.  They tell me that 8 year olds can totally get it,  so here's hoping.

Kate was really bummed that we walked out of there sans contacts.  Kids meal at McDonald's helped cure that,  not a treat she gets much...  if you can call it a treat.  I will admit that after most Dr. appointments these days I often feel the need for a pick-me-up.  And wouldn't you know it,  there's a McDonald's right there in Rady Children's Hospital.  I end up getting whoever I have with me that day an ice cream cone.  And I always get myself one, along with a Diet Coke.  I guess that's why I'm gaining weight. 

Noah and Abby

Noah and Abby had their cardiac echo today.  It's funny,  because when I took Kate to have hers I was so certain that nothing would be wrong I sat through it a little anxious,  but ok.  Today,  when it's almost certain that nothing will be wrong,  I cried the first 10 minutes of Noah's.  I keep looking at the dumb screen and seeing things that are wrong when I know I have no stinking idea.  I finally switched seats and watched 'Bugs Life' with Noah facing away from the screen. I was even thinking I need to go back to school and use my RN to get me into an accelerated ultrasound course.  HA!  I have time for that.  But it sounded good at the moment.   By the time Abby got in there I was much better.  Ugh.  One more appointment done. 

Kate's Eye Surgery

Well,  I  just got off the phone with the eye Dr.  at Shiley Eye Center at UCSD.  After conferring with another Dr.  that saw Kate,  they think it's best we postpone surgery for now.  They would like to have her fitted for contacts as they are supposed to give her better vision.  After we see how she does in contacts,  which I'm thinking may be difficult for an 8 year old,  we will revisit the surgery.  The eye surgery will happen at some point.  I think their thinking is that as long as she can see well enough we can postpone it until she gets a little older.  So,  we go back to Shiley on October 26th to see someone who will fit her for contacts.  Hopefully she will be able to use contacts.  She has asked to get them in the past so I know she is motivated.  Wish us luck.  I know Jed thinks we should just do it now.  Jed was the one who caught the dislocated lenses in the first place.  I am eternally grateful that he did.  I can't imagine something happening to Kate because we never caught it.  And I am really ticked at her regular optometrist here in SD who never dilated her eyes and caught it himself over the last few years!  Anyway,  I can see both sides of the argument for waiting and doing the surgery now.  It's difficult getting different opinions.  I can just hope and pray that erring on the side caution and trusting the Dr.'s at Shiley serves us well.  Where's that crystal ball when you need it?

Ethan's Cardiac Echo

Just found out that Ethan's cardiac echo has come back normal.  The first Dr saw a slight enlargement of the aorta,  but I guess with the more thorough test they were able to see that it is within normal limits.  Good news for once.  Now we wait for the blood test and Noah and Abby's cardiac echos. 

Noah, Abby, Ear and Van

Noah and Abby have their cardiac echo's this Friday.  Abby hates that she's missing school.  Who's kid is she?  I doubt they will say anything,  but we can hope.  I guess Nov 4th is sneaking up on us anyway.  I am going to see the ear Dr.  on November 17th,  same day Kate is seeing her orthopedic Dr.  If there isn't a Dr.  visit scheduled during the week it actually feels like something is missing.

Other news,  picked out a new van.  I will post a pic when we get it.  It's been  almost 11 years in my black van.  I noticed today that the front passenger headlight is actually falling out....it's my van confirming the choice to ditch it.  I hope.

Ethan and Marci Cardiac Echo

We both had our cardiac echo's done yesterday.  Usually the techs doing it won't say anything,  but we both got a "things look good to me" from them.  We'll find out for sure Nov. 4th or earlier if our primary drs decide to call us with the results.  Taking off for the Zoo and van shopping today.  I know, it's about time on the van.  It used to be a kind of badge of honor,  driving til it drops, etc.  But lately it's just embarrassing,  and squeaky,  and about to die,  I can feel it.  More than usual,  I should add.

The Silver Lining?

If there is any good news out of this,  it's that we caught it fairly early.  We have since heard of and read about cases where people didn't know they had Marfans and ended up dying early with an aortic aneurysm.  With medical care and medication, Kate should live a normal life span.  We were also told by the cardiologist,  that when Kate has children,  she will be able to have invitro fertilization and they can actually take out the eggs with the Marfan gene in it.  The genetics Dr.  didn't seem to think it would be that big of an issue since you can live with medical care and medicine.  Kate will have to make that decision someday. 

How Kate is Doing

Kate has such a great attitude.  I had to tell the elementary school that Kate can't sprint or exercise heavily.  She can't do anything that gets her heart racing.  She can also never lift anything heavy.  No Book Decor work for her.  And because of her eyes,  she can never play sports.  Especially sports where she might get hit.  And swim team is out,  too hard on the heart.  She was sad about that one.  At school the other day she had to sit out while the kids did some sprinting, racing each other.  I think that was strange for her but she told me about it while keeping her happy attitude.  She knows she has something going on.  She asked me last night how her eyes and heart are related to whatever is wrong with her.  Trying to explain genes and connective tissue to an 8 year old was not easy.  She claimed she understood, sorta.  I guess that's all we can ask for right now.
For the most part,  I don't think anyone would see a difference.  We can tell that she is worried about it though.  She asks questions out of the blue,  like when she has surgery on her eyes,  they will have to hold on to her because she wiggles when she's asleep.   She is also very attached to Ethan and myself.  Doesn't want me to leave for book club or even run to the store.  She doesn't cry or anything she just hugs me and asks me to cancel whatever I am supposed to be doing and stay with her.  It's hard.  It stinks.  We are thinking about looking into a Marfan support group.  Our concern right now is that some kids with Marfans look kind of different and we don't want Kate to be afraid that she will look like some of these other kids.  Marfans is hard because there is such a range. You can have kids like Kate, who don't show a lot of the outward signs,  and kids clear at the other end of the spectrum.  We are thinking of showing up to a meeting without Kate and see what we think she might get out of it.

The rest of us

Other family members.  Ethan had a smaller version of an cardiac echo because the cardiologist was nervous that Ethan may have the same thing so he checked him out early.  Turns out that Ethan does have a slightly larger aorta.  The geneticist thinks that the size is minimal and may not mean anything, while the cardiologist may want to start Ethan on the same meds that Kate will go on.  He has an actual cardiac echo coming up this Friday, the 14th.  Fun birthday present, right.  I have my cardiac echo Friday morning.  Noah and Abby have their cardiac echo's on the 21st.  We find out the results on Nov. 4th.

Just FYI, I am due to go back and get my hearing checked sometime in November.  I guess I need to schedule that.  Ugh.  Just what we need, more dr. appointments.  

Kate

First,  Kate's favorite color is pink,  hence this blog color.  I have started this blog at the request of others who would like to be kept up to date about our family's health.  So, here goes.  Kate most likely has Marfan Syndrome.  You can read about it here : Marfan Syndrome.

As you can see,  it affects many parts of your body.  So far,  it is affecting Kate's eyes and heart.  The eyes.  She has dislocated lenses in both eyes.  They lenses are currently down and to the left, I believe.  She has gone through many pairs of glasses in the last year which prompted me to take her to see my cousin, Jed Poll,  in Utah.  He dilated her eyes and found the problem right away.  I have since learned that her regular optometrist had never before dilated her eyes.  Make sure your eye drs. are doing that for your children.  We found this out at the end of June.  I then made appointments for her to see a cardiologist and a geneticist.  She will need surgery on both eyes sometime in the near future.  We are waiting to hear from her eye surgeon on timing right now.

Heart.  Awful day at the cardiologist.  She had a cardiac echo, EKG, and chest x-ray prior to seeing the Dr.  Her aorta is enlarged.  Everything else looks normal at this point.  She is not so enlarged that we are looking at surgery anytime soon,  but she will be monitored for the rest of her life with a yearly cardiac echo.  She will also be starting on a medication that is in it's trial phase that will hopefully slow down the progression of her aorta enlarging any more. She will have another cardiac echo in a few months just to check to see how fast the progression is.   Fingers crossed.

Her cardiologist is Dr. Grossfield who works with other families who have Marfan Syndrome.  He is at the children's hospital here in San Diego.  We liked him and have confidence in his care.  

X-ray.  The chest x-ray showed some small scoliosis of the spine.  She will go and see a pediatric orthopedist later this month.  I will update what he says later.

Geneticist.  Marfan Syndrome is usually inherited from someone.  We talked to a geneticist on Tuesday the 11th.  She said that Kate did not fit the skeletal profile for Marfans,  which is good.  She is really tall, 96th percentile,  but her arms are not that much longer than her length,  within cm's.  That is good.  She couldn't see any outward sign of scoliosis, also good.  She is ordering a blood test to check for the Marfan gene.  If she comes up positive,  they find the gene,  then Ethan will be checked for it.  If Ethan comes up positive,  Abby and Noah will be checked as well.  If Ethan comes up negative,  I will likely be checked.  Although,  given my lack of height,  she doesn't think it's from me.  She is actually leaning that Ethan doesn't have it either,  but that Kate is one of those genetic anomalies that just occurred.  We will know when we get the blood test back.  The kicker is that the test is very expensive, $1500-$2000,  so we have to wait a few weeks to get insurance approval.  Once she has her blood drawn,  it will take 8 weeks to get the results.  The waiting begins.