Life with MS & EDS

October 25, 2010

Little Sister Update

Little Sister had her six year old check-up.  Going to the doctor with her is always an interesting experience.  I somehow always end up feeling like a bad parent.  It’s weird to nonchalantly respond to, “So, how does she sleep at night?” with responses like, “Great, as long as it is broad daylight in her room.  She can’t deal with shadows, so we can’t dim the lights.”  I’ve lost count of the number of crazy things I’ve said in response to seemingly general questions.  It usually makes me laugh (although I try not to do so out loud in front of the doctors.)  The response to “how is she eating” was not quite as interesting.  I said that most of her calories seemed to be from juice, but we’re working on water.  I think I saw the doctor’s eyebrows rise at that one.  Little Sister chimed in with saying she’ll take a giant sip of water at recess.  I guess that’s progress.  I said that we were still at about 5 foods (mac and cheese, pasta with sauce, chicken nuggets, a variety of fruit, baked or mashed potatoes (that’s a very new addition), and cheese.)  I guess I should have added in jelly sandwiches, cereal, and the occasional waffle, in addition to snack foods.  She asked if we were using nutritional supplement and I said we were doing vitamins.  It seems like we need to consider doing nutritional supplements, like Boost shakes or something like that.  Her BMI about 14, which is at the 15th percentile.   I guess that’s not terribly low.  “Under weight” doesn’t start until 5% or less, according to the CDC.

The one thing that the doctor was not happy about was that physical therapy was dropped from her IEP.  She was quite shocked by that.  I said they dropped it because she was able to get around the classroom and the school.  I explained that we were trying to keep her active in other ways, but that soccer lessons aren’t going well, so we need to find something else to do.  She wrote a firm letter to the school saying that PT should be added back into the IEP or that she should have a medical 504 plan.  Regular PT is an important part of preventing arthritis and other painful complications in folks with Ehlers-Danlos, which she points out in her letter.  I imagine we won’t get anywhere with the school district, but I’m going to give it a try before finding private therapy.  She gave us a list of places we can try outside of the school.  These are the times I’m thankful we have supplemental health insurance for her.

She flat out refused to have her blood pressure taken.  The doctor was really good about it.  She got the manual cuff out and let Little Sister feel it and see what it did, but the tears continued until the thing was securely back in its holder.  That reminded me that we are overdue for her echocardiogram.  I need to book that at a time my husband can come with.  I think it’s going to take both of us to get her to do that.  The first one was soon before her sensory issues reared their ugly head.  I think it’s going to be a huge challenge this time around.  It’s never a dull moment!

Otherwise the visit went well.  It was great to be able to share how well she’s doing in school (except for some of the sensory things and her fine motor delay causing some frustration.)  We absolutely did the right thing in waiting a year before starting Kindergarten.  Her teacher said she’s doing well.  That was great to hear.  Little Sister seems to be having fun and that’s what counts!

August 20, 2010

CCSVI – 3 Weeks After Angioplasty

Filed under: Uncategorized — by mseds @ 4:07 pm
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I must admit that today is the first day I’ve felt exhausted.  However, given the day I’ve had, I think anyone would feel exhausted, so I’m trying not to read anything into this.

The day started with Little Sister waking up with what seemed to be a couple of sores on her left arm that didn’t look right.  They seemed to have pus in them.  She complained that they hurt.  Her skin looked irritated, so I covered two spots with band-aids and called the doctor as soon as they opened.  I swear calling the pediatrician for an appointment is like trying to get concert tickets before the Internet.  I managed to get one of their first appointments, so we got ready for the day and rushed out of here.

While at the doctor we talked about her various skin problems.  She’s only 6, but psoriasis and it’s been pretty bad this summer.   Hydrocortisone  cream 2.5% seemed to clear a lot of it up on her back, neck, front, and arms, but it still looks bad behind her ears and on her belly button.  She has terrible cradle cap on her scalp, too.  We’ve been using Head & Shoulders every other day this week, but no progress yet.  So, we had a long discussion about Little Sister’s skin and will be going to the dermatologist in a few weeks.  The doctor managed to clean off the gross looking areas on her arm and eye lid.  I wasn’t about to chance that at home and thankfully the doctor didn’t think I was crazy for not attempting that before calling.  There’s a good chance that they were just boogers (go figure), but she said that they hurt and I wasn’t about to question her.  It’s really hard to know what physically hurts her and what is a sensory reaction.  I swear if you put fake blood on her skin when she wasn’t looking and then she noticed it, she’d say it hurt and would cry.  If even the slightest thing looks wrong on her body, that’s just as bad as something actually being wrong.  I still don’t understand sensory processing issues, so she throws me for a loop every now and again.

After that we headed to camp and of course encountered road closures along the way.  It’s nice that they are fixing our roads, but driving around the area right now is challenging.  Thanks to the GPS, we only drove around an extra 10 minutes.  As soon as I dropped them off and was glad to get back to work, I remembered that I had to get to the dentist!  I was so focused on my daughter that I forgot about me.  At least I remembered with 45 min. to spare before having to leave.

Things went well at the dentist.  I needed 2 fillings, both on the right side, but top and bottom which required 2 separate shots of novocaine.  He apologized for the pain and I said it hurt less than my Rebif shots.  I think this is the first time I’ve had dental work done since starting any of the CRAB drugs.  It was kind of shocking to realize that novocaine hurt less than Copaxone or Rebif.  We had a nice discussion about how there needs to be pills for MS treatment and branched into a discussion about how messed up it is that pharmacuital companies aren’t in the business of helping people, but are all about their profit margin.  It was a nice way to pass the time.

I left the dentist with the whole right side of my mouth and most of that side of my face numb.  If that wasn’t enough, I’ve been having MS problems with my mouth again.  This week was the first time I’ve noticed this in a while and certainly the first time since angioplasty.  My upper lip, left side gets pins-and-needles that come and go.  This week I’ve noticed that this part of my lip hangs lower than the other side, although not consistently.  I called Dr. Generalist earlier this week and we decided that monitoring it was the best approach at the moment.  I don’t see any reason to go on steroids for this.  My MRI in June was clean and I don’t have any other relapse signs.  The only good part about all of this is that I could justify a Rita’s Gelati for lunch.  Yum.

The moment I pulled into the driveway, my cellphone rang.  It was camp.  I needed to bring Big Sister a change of clothing.  Lovely.  Just what I wanted to do was another trip to camp.

I managed to put in another hour of work before going back to camp to pick the girls up for the day.  Now I get to make dinner (as soon as I can feel most of my mouth again) and wait for Little Sister’s new DAFOs to be dropped off.

What I really want to do is crawl into bed.  But, that’s not quite an option yet.  I can’t wait for my husband to get home from his business trip.  I handled the rest of his trip just fine.  I was proud of how much energy I had and that I was doing things so well.  Then today came.  I need to remember that opening my veins didn’t make me superwoman.  It certainly helped me a lot, but I shouldn’t expect to be invincible.  I think anyone would be tired after all of this and I just need to keep reminding myself that even typical people become exhausted every now and again.

March 22, 2010

Health Care Reform Bill Passes

While I don’t think the health care reform bill goes quite far enough or accomplishes as much as it should, I am very thankful for its passage.  As a parent of a child with a diagnosed life-long disease, I no longer have to worry that she won’t get medical coverage or that we made any wrong decisions while trying to figure out what was wrong with her.

We first knew something was wrong with Little Sister when she was 9 months old.  She wasn’t rolling, wouldn’t lay on her stomach, and couldn’t sit up, among other things.  We started with physical and occupational therapy and began down the path to determine what was causing her delay.  We went to a pediatric neurologist.  We ruled out Cerebral Palsy and Spina Bifida with an MRI when she was one year old, but ruling things out didn’t bring us closer to knowing what was wrong.

We moved around the time she was two.  The old neuro told us to ask the new doctor for genetic testing.  Great, sounds simple enough, right?  Take some blood and know if one of hundreds of things were wrong.  It’s not so great actually.  As parents we wanted to know what was wrong with her, but knew that the answer could prevent her from ever getting health care coverage or life insurance in the future.  Thankfully, as a government employee, I knew we would not get dropped immediately, but what if I ever lost my job and needed to qualify for other health insurance?  It was a difficult decision.

We decided that knowing what was wrong outweighed the potential risk, so we went forward with the karyotype.  It turns out that the test didn’t show anything wrong.  We were offered the opportunity to do more extensive genetics testing, but decided against it.  Part of me didn’t want to know if she was susceptible to specific diseases or illnesses, but a bigger fear came down to future medical and life insurance considerations.  Not only did I not want to know if she had a gene that could lead to something down the line that we hadn’t even considered, I didn’t want anyone else to ever use that information against her.

One of the last conversations I had with our friend before she died from breast cancer was about genetic testing.  She was dying from a rare and aggressive form of genetic breast cancer.  She had two little girls.  She talked about not wanting them to have the test to determine if they had that potentially deadly gene.  We talked about fear of our girls not having health care coverage when they needed it most.  Trust me, it’s a really hard decision to make.  Knowing that you have something that could potentially be treated before it can do damage meant that insurance companies would also know and decide you were too much of a risk to take on.

With this health care reform legislation, I no longer have to worry about Little Sister obtaining medical insurance.  It’s okay that her medical records indicate she has Ehlers-Danlos Syndrome.  EDS is a very treatable disease and generally not life-threatening, but it’s still a pre-existing condition.  We need to monitor her heart, getting electrocardiograms every 3 years and yearly during puberty.  We have expenses for DAFOs (ankle-foot orthotics.)  We had expenses for therapy, but now the school system provides it (this could change.)  In general, it’s not an expensive disease.  I cannot imagine what parents of kids with costly and life-threatening diseases go through.

Compared with EDS, my MS is a very expensive disease.  Between brain and spine MRIs every 6 months (these will eventually be further apart), disease modifying drugs, and three neurology visits a year (sometimes more), I cost insurance companies quite a bit of money.  I hope that our Senators, Congressmen, and President continue to press of even more improvements to health care.  No adult should be penalized for pre-existing conditions and risk losing their insurance when they need it most.  Everyone deserves access to high-quality medical care, without it bankrupting them.

March 19, 2010

Sesame Place Challenge 2010

Filed under: Uncategorized — by mseds @ 9:14 am
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The Variety Club is doing the annual Sesame Place Challenge on April 25, 2010.  If you have a child with a disability, this is a fantastic event!  We go every year and really appreciate it.  I hope the weather is as nice as last year and that I won’t be on steroid treatment this time.

I just registered us for this year.  Sadly, my favorite part of the process is that “Ehlers-Danlos Syndrome” is actually on their drop-down list!  I don’t have to check “other” and then say what her problem is.

Thanks Variety Club and Sesame Place!

February 3, 2010

Kindergarten Transition Meeting

Tomorrow is Little Sister’s kindergarten transition meeting, so in typical Ivy fashion, I started stressing about it a week ago and am now extremely stressed.  I spent most of my spare time gathering papers, writing notes and documenting her progress and lack of progress in key areas — cognitive, gross motor, fine motor, sensory, etc.  I have a one pager now with things I think they should know.  I even ran it by my mom-in-law who is a kindergarten teacher.  She gave me good questions to ask them, such as what will they do if she refuses to go to an assembly or gets upset during one, will they let her use a slant board or sit on a pillow, etc.

I find the whole evaluation process depressing.  It forces you to focus almost exclusively on your child’s negatives and lack of progress.  I want to acknowledge fantastic progress she has made in some areas, but that could threaten her access to services.  Therefore I’m forced to emphasize all of her problems and that has me in the dumps.

When I don’t have to compare her to other 5 year-olds, I think she’s doing pretty well, but throw her in with her peers and reality hits.  She’s still at least a year behind in most motor areas and her sensory issues keep intensifying (not that schools seem to care much about that, but it makes home life rough.)

Right now I need to focus on getting her services and an IEP.  Based on Section 602 of the Individuals with Disabilities Education Act (IDEA) (P.L. 108-446), there are 13 areas of disability that qualify a child for services and an Individual Education Plan (IEP):

  1. autism
  2. deaf/blind
  3. deafness
  4. hearing impaired
  5. mental retardation
  6. multiple disabilities
  7. orthopedic impairment
  8. serious emotional disturbance
  9. specific learning disabilities
  10. speech or language impairment
  11. traumatic brain injury
  12. visual impairment including blindness
  13. and other health impairment

Per the statute:

(3) Child with a disability.–
“(A) In general.–The term `child with a disability’ means a child–
“(i) with mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this title as `emotional disturbance’), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and
“(ii) who, by reason thereof, needs special education and related services.
“(B) Child aged 3 through 9.–The term `child with a disability’ for a child aged 3 through 9 (or any subset of that age range, including ages 3 through 5), may, at the discretion of the State and the local educational agency, include a child–
“(i) experiencing developmental delays, as defined by the State and as measured by appropriate diagnostic instruments and procedures,
in 1 or more of the following areas: physical development; cognitive
development; communication development; social or emotional development; or adaptive development; and
“(ii) who, by reason thereof, needs special education and related services.

During our meeting with the committee last year, we were told that we’d have to focus on “other health impairment” since nothing else on the list really applies.  Although she wears DAFOs, her hypermobility is not significant enough to qualify as an “orthopedic impairment.”  Previously when fighting for services, like at the 3 year-old transition meeting, all we had was a nebulous diagnosis of “hypotonia” which is really a symptom, not a diagnosis, but at the time we didn’t know what was causing it.  Now at least we have a diagnosis – Little Sister has Ehlers-Danlos Syndrome.  We have a letter from a reputable genetics specialist stating that she will need life-long physical therapy to improve strength and avoid onset of arthritis.  It also documents her physical weaknesses.

Great, you’d think!  I have a detailed evaluation of Little Sister’s physical condition and a statement that therapy is necessary.  However, as we were told last year, this could all be written off as “medical” and not “educational.”  If they do not see enough evidence of this impacting her ability to learn, they don’t need to provide any services.  They’ll do their own evaluation to determine this.

Our problem is that there is a lot Little Sister can do for a short amount of time, but then won’t be able to repeat it even moments later.  She fatigues very quickly.  Another problem we had during the 3 year-old assessment was that they looked to see if she could do something, not the quality with which the task was accomplished.  Yes, she may be able to do a fine motor task, but they tended to ignore that she was struggling or not doing it appropriately.  She may have picked something up, for example, but many fingers were involved and her grasps were immature.  If this same standard is used during her upcoming evaluations, we’re in trouble.

Schools also do not seem concerned about her sensory problems, which if you read about our experiences in Disney World, you’ll know have become quite significant.  These are not going to come out during an evaluation process.  They have to be witnessed during regular life experiences.  Just wait until they have a loud assembly, a fire-drill alarm goes off, or she simply doesn’t get her way!  I’m told she is generally fine at school, but I did get to witness a typical Little Sister melt-down at school last week.  While I was sad that she was screaming, crying, and stamping her feet, I was secretly very glad her teacher got to see it.  What caused the tantrum?  There were two chairs of one style and one different one.  Another boy sat in the different one and she wanted that one, so she threw a fit.  That evening at her dance recital she refused to participate until the color dot she wanted to stand on was given to her.  We see this all of the time at home.  She threw a huge tantrum (that word probably isn’t even strong enough) a few days ago because Daddy gave her a bath instead of Mommy.  She doesn’t quite care that doing her baths is much harder for me.  Apparently it’s my job and changing the routine did not meet her approval.  I could go on, but you get the picture.  She probably isn’t going to be one of the “easy kids.”

Sorry for going on at length about stressing in advance of the meeting!  It’s not a good thing to stress during Girl Scout cookie season.  After a few thin mints, I thought it was better to write than continue eating!!  I know not much is going to happen tomorrow.  It’s a lot like opening arguments.  It’s a time to lay out the case and learn the process.  Then they’ll schedule evaluations, after which the real battle, I mean fun starts.

September 7, 2009

Feeling Blue

I’ve been trying to find time to organize my thoughts and actually sit down to write this post, but I’m either not near something to write with when my thoughts come together or my thoughts escape me when I am able to capture them.  The ideal time just isn’t happening, so I’ll make do with less than ideal.  Now if only the girls would entertain themselves long enough to stop interrupting my thoughts every sentence….

My MS has been under control.  For the most part I’m still benefiting from the Solumedrol/Prednisone experience last spring.  I’ve accepted the fact that my optic neuritis in my right eye is here to stay and that the vision will never improve to 100%.  While I’m not enjoying the Copaxone shots, they have become part of my routine and are going okay.  I’d still like to replace the arm shot location, but can’t think of another body part to use since I’ve already ditched the thighs.  Every now and again I’ll use an extra stomach shot or the side of my hips, but for the most part I just suck it up and deal with the arms.

Despite my physical health doing okay, I’ve been feeling blue most of the summer.  Little Sister has been extremely challenging the past few months.  Until now, I’ve always thought of myself as the parent of a child with a developmental delay.  She walked at 26 months and has had other motor-related delays.  In all of her evaluations for services, she always placed approximately 6 – 12 months behind.  I could handle that.  However, this past spring during her evaluation her motor skills and other abilities placed her at between 30 – 36 months old.  Chronologically she was 59 months old, so she’s now showing an overall delay of approximately 50%.  The scores themselves are between a 25% and a 75% delay, depending on the ability.  This struck me pretty hard.  I’ve known that she’s not where she should be for fine motor for a long time and have been saying this to the various therapists and administrative folks who have seen her.  I know that not writing letters or most shapes by 5 isn’t typical.  However, the tests finally caught up with me.  I suppose they finally expect more at 5 than prior to this and her scores just plummeted.  It’s not that she’s regressed or anything; it’s that she hasn’t progressed.

This together with her behavior has been a real challenge.  I’ve gone from being the parent of a child with delays to the parent of a special needs child, which for me is a very big distinction.  Before I could just pretend that she was about a year younger than she really was and that eventually she’d catch up or that being off a year wouldn’t matter in the long run.  I can’t do that anymore.  Her sensory issues have dramatically escalated.  For example, last summer we were able to take her to the circus, the movies, and other similar places.  This year we can’t even go out to a restaurant without a breakdown.  She flat out does not want to leave the house unless it’s to go to school, the family beach house, or her grandparents’ houses.  She cannot tolerate any loud noises, unless she’s making them.  Rooms need to be lit like broad daylight, regardless of the time of day.  Calling her eating style “picky” would be an overstatement.  Let’s not even get into how awful it’s been trying to potty train a 5 year old!

Speaking of potty training, I do finally have a name for the stomach problem both of our girls have.  It’s called Encopresis.   It’s a condition of chronic constipation, along with reflexive withholding of the stool (refusing to go to the potty and not even realizing that they have to poop.)  This was an “ah-ha” moment this week.  It’s nice to finally have a name for this and hopefully be able to track someone down who can help us with it.  Every doctor we’ve seen, including the pediatric gastroenterologist specialists we’ve taken them both to in two different major metropolitan areas has never once mentioned this to us.  They’ve given us the basic lectures about needing to have them do potty sits (“Every day, after dinner, have them sit on the potty for X number of minutes.” – Thanks, doc, that’s helpful….)  They’ve prescribed various doses of Miralax and FiberSure.  They’ve lectured us on making sure they are drinking enough, getting enough fiber, and so on.  However, what they fail to acknowledge is that this goes beyond typical constipation.  Neither girl even notices that they need to use the bathroom!  They don’t even feel it.  They’ve conditioned their bodies to completely ignore it!  Until they tackle the psychological part of this, we’re never going to see improvement.  For now we just keep throwing out an absurd amount of underwear (we should by stock in Hanes!) and trying any way we can think of to make them use the bathroom.  A couple of weeks ago we finally put Little Sister in underwear during the day.  She’s getting the peeing part down okay.  She has accidents about 15% of the time.  But, pooping is a whole other story!  I’d like to blame this on the Ehlers-Danlos and her hypotonia.  It makes sense that since she’s stretchy that something like this could happen.  But, Big Sister doesn’t exhibit any of the signs of Ehlers-Danlos and still has this problem, so there’s got to be something else going on.  I am going on a quest to find a doctor who can tackle this once and for all.

And as if this was stressful enough, I’ve had a difficult time handling Little Sister’s outbursts.  We’ve been at the beach all week, which is our typical week before school starts routine.  It’s our second long getaway of the summer (the first being Disney and you’ve likely already read how poorly that went.)  Going down the shore is usually low stress for her.  There are days when she flat out refuses to go to the beach, so I usually stay back at the house with her.  I love the beach, but if I don’t get down there every day, that’s fine with me.  However, I cannot handle being stuck in the house 24/7.  This week it’s been difficult to get her to leave the house at all.

Here’s the event that made me just lose it.  When we’re down here we almost always cook at home.  Saturday we decided to have lunch out.  Yeah!  I was going to get to try a new restaurant and I didn’t have to cook!  We found this nice looking Italian place in town.  We got seated and I picked out something that sounded yummy.  After ordering I noticed that Little Sister seemed to need to use the potty.  I made her come to the bathroom with me and once back there she started screaming and crying!  I’m sure everyone heard us.  Getting her to sit on the potty became a huge struggle.  I pulled her pant off and held her there, not sure why I was doing that because I knew it wasn’t going to work.  After about a minute I took her off and dressed her again and ended up in tears myself.  I just couldn’t take it anymore.  Potty training has been a disaster, her behavior has gotten pretty bad, we cannot even go out as a family anymore, and I’m not handling this well.  I ended up carrying her out of the bathroom and straight out of the restaurant, asking my husband and mom-in-law to box up my lunch and coffee.  My husband followed me out and helped me carry Little Sister out to the car, where she and I just sat in the car crying.  I’m at the end of my rope with her and not sure what to do next.

We’re meeting with her occupational therapist and physical therapist a week from today.  We’ve not had the chance to sit down with them yet and I’m hoping they have more insight on things than her case manager who meets with us to do her IEP.  Although her sensory issues are not a problem at school and have therefore been a struggle to get into her IEP, they are making life at home almost impossible.  There’s got to be something we can do.  I also ordered two books on sensory integration and they arrived just after we left for the beach.  I’m ready to seek family counseling at this point.  I’m tired of crying about this and feeling helpless.  It doesn’t help that we should be seeing her go off to her first day of kindergarten this week.  I know she’s not ready and I’m 100% certain that keeping her back a year was the right decision, but it’s still hard.

August 18, 2009

Disney with Special Needs Kids, Part III

We divided up Epcot into two days.  The first one focused on all of the rides in the “Future” area and the second was primarily aimed at doing the “Worlds” side.

Day Five: Epcot

Waiting to get into the park was a challenge because she hated the music that was playing.  She was quite upset and demanded to go home.

Test Track – Yes, I took her on Test Track.  Correction, we all went on Test Track and she sat with my husband in the car behind me.  We said it would be like Mommy or Daddy driving really crazy.  She hated the dark part, but seemed to like the race track part outside where it was bright and sunny!  She refused to go on it again the next day when we came back, so I imagine she didn’t like it all that much.  3 stars.

Journey into the Imagination with Figment – She refused to go on the ride even though she loves the Figment character.  She did love the play area outside of the ride.  That was great!  Play area – 4 stars!

That’s all she was willing to do at Epcot.  She spent the rest of her time at the “car wash” and playing in the sidewalk fountains.  Apparently being in soaking wet clothing is a good thing!

Day Six: Epcot

She did okay at Epcot on the Worlds side.  Endurance was more of a problem here since there’s a lot of walking.  We did use a stroller to get around, but she got tired from the little bit of walking she did do.  She was pretty good during the excellent lunch we had at Great Brittan’s Rose & Crown Pub.  Then we got to find Mary Poppins at the toy store there.  She happily greeted her as Mary Poppins is one of her favorite movies (just like her mom!)  Usually Mary Poppins is outside, but it was pouring rain (quite fitting for England), so she was inside in a well lit part of the toy store.  We also did some shopping there.  They have a ton of the Little Miss and Little Mr. books.  Little Sister LOVES Little Miss Naughty (I hope it’s because she’s all purple and not because she’s naughty), so we got her a Little Miss Naughty doll, which she loves.  We tried to wait out the rain, but it wouldn’t stop.  We put on our ponchos, which thrilled her, and headed off to other destinations.

She generally waited outside while we looked around the shops in the other countries.  We got her into Mexico for a little bit.  It’s dark in there, but there are tons of beautiful, brightly colored objects there to look around at.  She also enjoyed banging on the drums there.  But, she demanded to leave after about 5 minutes.

She was thrilled about having afternoon snack at Norway’s bakery.  I got her a giant chocolate chip cookie.  It had a picture of a Viking on it on a circle of white chocolate.  I turned it over so she wouldn’t see it.  Thankfully she had already started eating it before noticing it and I explained what it was and to ignore it.  She didn’t seem bothered by it and inhaled the whole thing!

Day Seven: Sea World

Dolphin Show – She did kind of okay during the dolphin show.  She likes dolphins because the name of her previous preschool classroom was “dolphins.”  She got upset when the tone of the music changed when the mean guys came out as part of the bird portion of the show.  4 stars

Shamu – She was quite upset during this show, even though it’s an outdoor stadium in bright sunlight.  We sat in the top row of the stadium where it was a little cooler and far out of the “splash zone.”  This didn’t help her any because she spent the entire show complaining about being up high.  She kept asking to leave.  She held her ears and threw a fit most of the performance.  She spent the majority of time standing on her seat looking out the back of the stadium.  0 stars.

Penguin Exhibit – I thought she’d like seeing the penguins.  She enjoyed them when we went to Montreal two years ago and she still remembers the trip.  We got part way into the exhibit when she started to complain about the darkness.  I focused on how cute the penguins were and picked her up for a bit.  She stood on the moving sidewalks, thank goodness because although she’s barely 40 pounds, she’s hard to carry when throwing a fit. I got her over to the puffin area where she really got upset about the smell (it wasn’t pleasant).    I had to pick her up and carry her out as fast as I could, which is difficult to do when a lot of people are between you and the exit.  1 star.

Cirque du Soleil-type show – Everyone except my two girls really wanted to see this, which I found strange because we saw the real Cirque du Soleil when it was in town last year and they both liked it (goes to show how dramatically worse her sensory issues have gotten during the past year.)  Thankfully my husband’s cousins met up with us for the day and they happily took my girls over to the kids’ area so that we could see the show.

Shamu’s Happy Harbor – she had a blast here!  Yet another chance to get soaking wet while fully clothed! I think this was the most fun she had all week.  5+ stars!

Shark exhibit – I tried this with her, but it was another disaster.  Soon after we got inside I had to swoop her up and race for the exit.  She enjoyed looking at the rays in the outside tank though!  Inside – 0 stars; outside – 3 stars.

(Side note from me regarding MS and Disney/Orlando: Seaworld was far more difficult for me than the other days.  I’m not sure if it’s because it was our last destination and that I was tired or if it was because of the heat.  Seaworld definitely does not have the amount of shade that Disney locations have.  There are stretches of walkway that are in the blazing hot sun.  I was wiped out.)

Disney Trip in General:

We’re still having no luck with potty training.  It’s going very poorly.  She used the potty about 10% of the time during vacation, which is actually an improvement.  She would only use the potty when we were out and about, not at the rental house.  It was kind of like being at home.  She won’t use it here, but wants to check out bathrooms in other places.

Although we had her DAFOs on, she fell a lot.  I was concerned that she’d be covered in black and blue marks when we got her back to school, but it wasn’t too bad.  She fell at the Honey I Shrunk the Kids playground and on the wet floor in the Sea World café.  She also fell off her bed (while awake and just playing) at least 3 times.

I think her favorite part of the trip, aside from Dumbo and It’s a Small World, was the pool at the rental house.  The house had swimmies which made her feel safe and people took turns holding her.  She got cold easily, so she went back and forth between the pool and the hot tub.  While I love being in the water, this part was hard for me.  The pool was too cold, so I generally stayed in the hot tub, which eventually got too hot and aggravated my MS symptoms.  She and I both have a hard time regulating body temperatures.

She generally didn’t eat well the entire vacation.  The exception was a large chocolate chip cookie we got at the bakery in Epcot’s Norway, which she devoured! She was also quite quiet the whole trip. She finally started talking a lot the last day when she knew we were coming home!

Surprisingly she did really well with flying!  On the way there she had an aisle seat and was really excited to have the window for the way home.  Unlike Big Sister who demanded the window seat on the way there, but rarely ever looked out the window, Little Sister seemed to be fascinated and looked out often.  Unfortunately, she also flooded her pull-up on the flight back and had a noticeably soaked bottom when she stood up.  We made her carry her backpack to try to cover her backside, which is when she started to throw a fit.  By the time we got to baggage claim, she had the hugest tantrum I’d ever seen.  She was spitting, hitting, screaming, crying – you name it, she was doing it.  This lead to her being grounded for the first time.  We took away all screen time (e.g., TV, computer) for the rest of the day and until noon the following day, on the condition that she had to keep her pull-up dry all morning and start using the potty.  (Potty training is still a disaster, but that’s something for a different post.)

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