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.