I trust you, Madison

Once upon a time, in a small town in Texas, the beautiful Marika Kalanges showed true faith in Madison's ability to walk when she told Madison to take her beloved Hedgehog, Shuni, for a walk.  Down the street.  On concrete.

Marika probably doesn't know how significant that moment was for Madison and me.  Madison took that Hedge Hog for a walk and Madison did not fall down.  The trust that Marika gave to Madison that day was the most incredible motivation I have ever seen.  That moment, I realized I needed to have more faith in Madison's abilities.  Marika's biggest gift to me was handing me that faith.  In the form of a Hedge Hog, no less.

Often, I hear Marika's beautiful Hungarian voice in my head saying, "I trust you, Madison".  And when I hear this voice, it gives me the confidence to let Madison try something new and challenging.

So......

Yesterday, when we got home from Costco, Madison asked if she could carry the eggs in. (Please cringe right now.)   The initial response in my head was, "NO WAY, are you crazy?"  But then I heard that Hungarian voice in my head and said, "Sure, I trust you Madison and I know you can do it."  Well, Madison started to carry the eggs but realized it just might not work out so she quickly turned around and "put" the eggs back on the car seat.  Just one egg cracked, but she didn't notice.  It's truly amazing what just one egg can do on a leather seat.  I took a deep breath and didn't let Madison know that an egg cracked.

So while I was cleaning up the slimy poultry...  Madison got herself into the house through the garage, stepped in the cat's water bowl, got 10 paper towels down to wipe up the water, decided to empty the pencil sharpener (???), got pencil shavings all over her pants so she changed her pants, went into the kitchen to get some water, but accidentally dropped the cup, and got 10 paper towels down to wipe up the water.

I just realized that really sounded like "If You Give a Mouse a Cookie".

This all happened in about five minutes.

So while the Hungarian voice in my head did not lead to Madison successfully walking eggs into the house, it did give us so many other successes.  Madison independently got herself into the house.  She cleaned up after herself.  She changed her clothes by herself.  And she had the confidence to get herself a cup of water.

I was pretty wiped out after cleaning up after Madison cleaning up after herself, but so very, very grateful!!!  Marika's faith has been a gift to our whole family and we will be forever thankful.

kerigustafson.tripod.com

5,667 Beautiful Happy Genes

And the news is…  There is absolutely no news!   The results are in and Madison continues to be a medical mystery.   

For those of you who don’t know, Madison was diagnosed with “Cerebral Palsy” simply because the doctors don’t know what else to call her “condition”.  Because of this, she is always the first to take any new tests that are developed that might give us more answers.  We are in a very exciting time in the world of genetics (or so I’ve been told), and the technology that has been developed over Madison’s lifetime is fascinating.

She did her first human genome DNA Microarray test when she was about two.  It was the latest and greatest at the time.  She’s done several since then.   They have never yielded an answer.  As they continue to fine tune these tests,  we are always given hope that we might finally get an answer.   This last year, there was a new latest and greatest test and we really did have some solid hope that we might get an answer.  In fact, 50% of all undiagnosed cases are getting a diagnosis with this new test!  This last test was able to test 5,667 genes.  In the world of genetics, this is incredible (or so I’ve been told.)   We did blood work for this test last spring, and just now got the results.  If any of these genes were mutated or abnormal in anyway, it might help us understand Madison better.  It might indicate a particular disease or condition. 

But alas…  Madison has 5,667 beautiful genes with no abnormalities!  There were a few “markers”, but they don’t match Madison’s symptoms, so they are deemed irrelevant.  This could be considered great news – some of those mutations are indicators of some terrible things.  It is only bad news because our hopes were a bit dashed at finally getting an answer.

So what does this mean?  Nothing, really.   A diagnosis is not going to change Madison’s life in any way.  If she does have a genetic disease/disorder, it’s not like anything can be done to “fix” it.  And we are not  in the business of “fixing” Madison anyway!  But we do want to do all that we can to make sure she is living the fullest life possible and that we are giving her all of the opportunities and help she might need.  A diagnosis would help us plan a bit more for the future.  And darn it, it would just be nice to solve this mystery.

So we shall continue to take pride that our girl is, indeed, one special gal.  There (really, truly) is no one like her in the whole wide world.  J  We will continue to thank God for blessing us with this beautiful, amazing,  spunky child, and be appreciative of all of this new technology that perhaps, someday, may give us an answer.

http://kerigustafson.tripod.com/

Refreshed Hope: Arizona, 2016

I am sitting in a hotel room in Peoria, Arizona, experiencing my first Monsoon and watching an amazing lightning/wind/dust storm while Madison is soundly asleep next to me after a week of intense therapy.  I will always marvel at the situations I wind up in because of this little wonder.

Before I explain this week of therapy, I have to reflect back and figure out what brought us here....

It’s been a tough couple of years.  My Facebook posts might not reflect that, as I do tend to paint with a very positive brush!

The last intensive therapy I did with Madison was in Texas two years ago.   It was an AMAZING experience.   Madison did such incredible things, and we still felt so much hope, excitement, and potential.  Madison was walking entire city blocks unassisted.  If she fell down, she got right back up again and continued walking.  We have the most amazing videos of this time…  http://madisongustafson.blogspot.com/2014/07/madison-is-super-star.html

Then we got home.

It was a tough year.  Madison was frustrated and unmotivated.  We couldn’t reinforce anything we learned in Texas.  She got sick.  We could never figure out why, but she threw up all the time and our focus transferred to that.  We could no longer fret about her walking, talking, and standing when we were dealing with daily vomiting.  The doctors had no idea what was happening and could only say it must be related to her so-called “Cerebral Palsy”.

We saw a nutritionist who said Madison’s diet was fine.  Lol.  I knew it was not, but was eager to accept that particular opinion.  We sought after an “alternative” nutritionist.  She was (is) amazing, but I will never feel like we can live up to her expectations.  (6-8 supplements a day, no sugar, all vegetable/lean protein diet.)  The only way we can get supplements in Madison’s body is through chocolate pudding.  For some reason, the nutritionist doesn’t like that… ;-)    Though we will never do what this amazing nutritionist expects, we try VERY hard and Madison is no longer throwing up every day.  That is a good thing.

And then Madison grew.  A LOT. And then she grew some more. She grew so much she could no longer walk or stand.  She just can't figure out how to balance this new, very long body.  She has finally realized that the falls hurt.  She gave up on walking, just like those stupid doctors said she would.

And then there were the "seizures"...  That's just a whole other story...

So through severe behavior issues, HORMONES, incredible growth, medical issues, poor nutrition, sketchy educational experiences, and a plethora of other things, we have meddled through the last few years.

We didn’t think we had the funds to afford anymore “intensive” therapy, and had become skeptical of the long term benefits of all the therapy we had been providing Madison over the last ten years.

However…  Some dear friends of ours had been researching alternative therapies, and discovered an incredibly affordable “movement specialist” in Arizona.  We had exposed Madison to a similar type of therapy many years ago, and it was amazing. (http://kerigustafson.tripod.com/id28.html) But it was SOOO expensive.  $150/hour expensive.  We drove to the Bay Area for over a year and paid SO much money.   Madison experienced a few vague, though significant results, but not enough to warrant the continued travel and expense.  With all of this experience behind us, it was very motivating to think about this therapist in Arizona who made it her life’s work to make this type therapy affordable.  Affordable, as in $500 for an entire week of therapy.   How could we not try it?
http://www.movementlesson.com/home.html

It was a great week.  This therapy is different.  But it’s amazing.  It is something that begins with no goals.  (Which is CRAZY, because everything in Madison’s life is goal-oriented.)  This amazing movement specialist, Michelle, did not want all of the history; she just wanted to begin to “work” on Madison.  It is a very gentle therapy. Basically, it looked like Madison was getting a fantastic light message twice a day every day this week.   It looks like it is passive, but once you understand it, you realize it is actually a lot of work.    

So I watched.  I watched Michelle's talented hands, and I watched Madison’s body with new eyes.

The first day, I watched Madison’s feet contort into crazy positions, as they always do.  I saw her crash down from the therapy table to the floor in a way I am SO used to. I watched her play with Duplex legos in her very typical, disorganized way.  (Slamming a few pieces together, ten more pieces dropping on the floor, and her not paying much attention to any of it…)  I heard her tell me “hi” and “I love you” over 100 times within the first 15 minutes.  (So sweet, I know, but….)

The last day (today), I watched Madison’s feet flat on the floor as she calmly built a 20 piece tower with the legos.  I heard her tell me “hi” only once and “I love you” only two times.  I saw a calmness in her body I haven’t ever really seen.  When I helped her get ready for bed this evening, I felt her stand up for me like she hasn’t done in over a year.  Something has definitely changed in this girl!

I met a beautiful mom from Washington DC who ended up moving to Arizona so she could study under Michelle because it is the only thing that is helping her daughter.  I met a blind girl with CP whose family moved here from Hong Kong so she could receive this therapy.  The fact that I drove all the way from California was like no big deal in this world.

Will it “stick”?  Only time will tell.  Madison's body was introduced to new ways of moving that her brain really liked.  (Or perhaps I should say Madison's BRAIN was introduced to new ways of moving that her BODY really liked; I'm still trying to figure out how it all works!) I do believe her body will remember many of the things it learned this week.  Have I seen all that has been accomplished this week?  Probably not.  I can’t wait to get back home into our regular environment and see how Madison’s body reacts and what she might be capable of now…  

Are we done?  Of course not.  Can we afford to spend a week in Arizona every 6 months?  Probably not.  (But Michelle travels, and I might try to concoct a way to get her local a few times a year with other students!)

But one of the most valuable things this week has given us…  Refreshed hope.  It gave me beautiful time with Madison to remember how incredible she is.  And it made me realize that we can NOT give up.  She still has so much to learn and she is so incredibly capable.  We still have time to prove those doctors wrong!

While Madison struggles with things most of us take for granted such as walking and talking, she has gifts many of us could only dream of.  She lights up a room.  She makes the most unlikely people smile with her charm.  She makes friends WHEREVER she goes.  (I do believe that Rosanne, the hotel manager, will now be a lifelong friend!)  I am so grateful for this opportunity to look at Madison with fresh eyes and for being able to step back and remember HOW hard she has to work to do just about everything.  I needed that.  It has been so incredibly challenging living with and being mom to this frustrated little gal these last few years.

As we journey back home, I am excited.  Sometimes it is hard to understand the path and plan that God has for us.  I have been working on trusting that path even without always understanding it. We are in His good hands!  We will begin this new school year (middle school for this girl!) with calmness and hope.  I am so thankful.

A good video explaining more about this therapy:  http://www.movementlesson.com/exceptional-family-tv.html

To go back to Madison's original website, click here:  kerigustafson.tripod.com

Here are some pictures of Madison working with Michelle.  They clicked.  Michelle definitely "got" Madison.  It was so fun to watch.

And between therapy, we had to entertain ourselves somehow...

Something Madison has never been able to tolerate before - a WHOLE movie.  We had so much fun watching Finding Dory!

 Maddie's new BFF Rosanne.  <3

 We found the trick to beating the Arizona heat.  Malls!  We walked around a lot of malls.  This sweet gal gave Maddie a little makeover. 

 Maddie wiped out after her first day of Movement Lessons.

 Day Two - We went to the zoo.  In the middle of the desert.  It was only 112 degrees.  Not a great idea, but Maddie had SO much fun!

Visiting the aquarium.

Eating dinner with the sharks!

Sea World, Sparkles, and Sass

What an awesome trip to San Antonio we had!  

Well, kind of.  

We captured many pictures in which I could convince you all that we are the sweetest, happiest family around.  But I'm going to try to include ALL the moments; not just the picture-perfect ones.  

This blog will serve as our family's photo album for this trip, so it is a bit lengthy and probably a bit too much for those of you looking for a quick read.  ;-)

We started our journey to San Antonio mid-day on Friday.  It's about a five hour drive from Dallas.  Maddie had a day of therapy and none of us were too anxious for the long drive.  We were expecting tons of traffic, but it really wasn’t so bad.  Maddie was cranky and SASSY, but fortunately she took a long nap.  Derek drove most the way, but I got to take the wheel when he got sleepy.  One freeway had a speed limit of 80!  That was kind of cool.

 Maddie asleep on my lap.  She slept for about half the drive.  

Big Sister at peace.  

We started our Cracker Barrel commitment that evening for dinner.   Darn, that place is good. 

Maddie found Longhorn baby supplies for her doll at The Cracker Barrel amazing gift shop.  (Thanks for the spending money, Nana!!!)  This kept her entertained for the rest of the drive.  ;-)

We got to our hotel by the time it was dark.  Our first impression of San Antonio: a bit frightening.  There were many people on the street – lurking and asking for money.  No different than any other big city, I suppose. Harmless, I’m sure, but not how you want to be greeted in a new city with two young girls.

The hotel ended up being quite lovely, but we were all a bit cranky after travelling for so long.

Drury Plaza Hotel Riverwalk in San Antonio - fancy!

Morgan's Wonderland

First on our agenda the next day was to visit Morgan’s Wonderland, the country’s only special needs amusement park  This is a really amazing place.  BUT it was really hot that day AND their weren't many opportunities to cool down.  Maddie tried to have fun, but it was a tough-go.  I will tell you about it through pictures...

The first thing Madison saw was the playground.   She quickly rolled over to it and got out of her wheelchair as fast as she could.  This is great, but she became really sweaty and miserable after about five minutes.  We saw the most amazing contraption where a physically-disabled person could give the monkey bars ago.  It's a beautiful idea, but it didn't work out so well for our girl:

(I don't think our videos work on iphones or ipads; we figured that out after our last post.  Someday I'll get that figured out!)

After this, we tried to get her into a bucket swing, thinking that some good swinging might help calm and cool her down.  This just resulted in another ten minute tantrum.  We then found another really, really amazing swing that you can roll a wheelchair right into. This is pretty awesome, as Madison is unable to use a typical swing.  After enticing her back into her wheelchair, she gave it a try.   She loved it for about five minutes:

We also found this fun teeter-totter type thing:

                                                   

Morgan's Wonderland has a building called "The Sensory Village".  In it is a pretend grocery store.  Maddie liked it, but she was so excited she couldn't stay standing.  She fell HARD many, many times, and freaked out all of the little kids.  I tried to help her, but she slapped me.  After spilling her third basket of groceries, she freaked out and threw a fit:

She went back into the grocery store after she calmed down a bit to give the registers a try.  This lasted about two minutes until she flopped on the floor and started screaming again.  How I wish I could help her enjoy these things, but when she is in this mood she wants nothing to do with us.

Savannah wasn't too thrilled yet with Morgan's Wonderland, but was trying REALLY hard to be a trooper. But between the heat and the tantrums, that was tough.  Here is one of the few pics of the girls we got together.  This was sweet, as Madison was helping Savannah's horse move by pushing down a bar with her foot.  Not an easy task for this girl:

 Savannah perked up a little when she found the newscast room where she got to try working with a green screen.  This was some FUN STUFF.  She got to enjoy it all by herself for quite some time, as Maddie was in a time out for calling Savannah "stupid" and hitting Derek in that horse room:

The below video makes me LOL everytime I see it.  Savannah just really, really enjoyed this whole green screen thing (you must try to watch until the end when she does a little dance and then gets washed away!):

Once Madison was free from timeout (there was a service dog there that helped her calm down...  :-)), Savannah wanted to show her how to use the green screens.  Clearly, she wasn't too impressed.  At least Savannah was still having fun!

 The below room afforded us the most peace.  It was a room full of really amazing interactive screens.  For instance, you touch this pool of water and flowers start appearing.  It was dark and peaceful and exactly what Madison needed:

  

 For quite some time it was just our family in this big dark room.  Savannah had the opportunity to do some ballet moves in front of a butterfly screen, and that just looked really cool!

Getting food at this place was fairly ridiculous.  It took me 45 minutes to wait in line and get food.  By the time I got everyone's food, the family was really, really hot.  It was at this time, though, that Madison finally wanted to try the bucket swings.  But this had to be "all by herself".  She hopped back and forth between these two swings about 20 times.  They are not easy to get into, and she fell A LOT.  For some reason she did not get frustrated.  But she picked the very hottest time of the day, and picked the swings that had no shade covering.  She got really, really sweaty.

Madison threw a fit getting on the Carousel and getting off the Carousel, but had a lot of fun ON the Carousel.  Plus, they let you go around as many times as you want here, so that helped a bit.  The cool thing about this Carousel is that you can roll a wheelchair right up onto it!  However, we are very fortunate that Madison is not that wheelchair bound.  She chose to get out of her wheelchair and get on an animal.  (Which is actually what caused the fit-throwing.  We were not understanding that she didn't want to stay in her wheelchair and she got pretty ticked off when we tried to roll her chair up onto the Carousel.)

Another pretty awesome attraction Morgan's Wonderland are these cars that they can transfer an entire wheelchair onto.  This was a bit counter-intuitive to us, as Maddie CAN access this kind of ride in a typical way (hopping out of her wheelchair and just climbing into a regular seat), but it was just pretty cool to get on and off a ride like this without so much effort.  (However in the video below you can see HOW much effort it is for all of the workers there!  It was fascinating to watch them in action...):

So...  after all was said and done, of course we are so glad we had the opportunity to visit this amazing place.  If the day had been cooler and Maddie had been in a better place, it might have been a more successful experience for us.  Fortunately, I tend to always put on my rose-colored-glasses when I look back at things, so eventually this will all be one big happy memory!  (Except when I go back and read this blog, I suppose!):

 

Sea World

Next on our agenda was SEA WORLD on Sunday!  We have never been to a Sea World, so this was a wonderful opportunity for our little family.

Over-priced park picture we were suckered into buying!

We saw dolphins up close and personal:

We watched several shows.  The most amazing one was "Azul", which had beluga whales, dolphins, birds and acrobats:

Unfortunately, Savannah doesn't like roller coasters; Madison is our dare-devil!  Madison was able to convince Savannah to go on this kiddie-roller coaster with her:

Derek and I took turns taking Madison on the REAL rollercoasters!  This was the fastest roller I think I've ever been on.  Maddie looked so incredibly petrified, but right when she got off, she gave us this thumbs up and asked to go on it again.  I do worry about her floppy little body on these types of rides, but she always comes out unscathed...

So this was an interesting experience for us to go to the "special" amusement park on one day and the "regular" amusement park the next.  Clearly, we had a lot more fun at Sea World.  (Well, we did have some challenging moments, but they were definitely out-weighed by the fun stuff.)  And this makes sense.  Madison doesn't really like being treated "special".  She wants to enjoy all of the things typical little girls do.  And she is so brave and such a daredevil, I think she needed the stimulation of  what the "regular" park had to offer.  I'm so grateful that a place like Morgan's Wonderland exists in this world, but I just don't think it is for our girl...

The Alamo

Monday, our last day, was "Derek's Day".  :-)  He gave us a quick history lesson on The Alamo, and then we went to visit it.  We could walk there from our hotel.   It was pretty amazing.  Smaller than I imagined.  Not as dusty as I imagined.   

Maddie wasn't especially thrilled with the Alamo.  We stayed outside and counted cannons, while Derek and Savannah really toured around reading and learning...

Other Special Moments in San Antonio:

Enjoying the Riverwalk - what a neat place!:

Enjoying the roof-top pool:

    

An extra snuggly morning in the hotel:

Napping!:

And last but NOT least...

Though we had many struggles throughout this trip, we also had some very amazing moments.  And this was by far the sweetest of them all...

Those of you who know Madison understand that she can be quite infectious.  She says hello to all, and will try to start a conversation with just about anyone.  We tried to curb this at a few points her life (the whole don’t-talk-to-strangers thing), but eventually we just had to “let it go”.

On the last day of our trip we were eating at the hotel’s most-awesome breakfast buffet.  Madison be-friended the most adorable group of ladies from "Jersey".  By the time I had gotten my food, she had already inherited two of their bracelets.  At first I felt bad (do people just give her stuff because they feel sorry for her?) but then realized these gals were actually quite genuinely taken with our girl.  They loved how Madison was so sparkly (oh, how I love that description of her!)  By the end of the breakfast, Madison had ended up with three of their bracelets (these gals were quite bedazzled…) and a request for pictures.  We then exchanged numbers so they could send me the photos:

Madison became an honorary member of their “The Sparkle Club”:

By the end of the day I had received several heartwarming text messages from our new-found friends from New Jersey.  Here is one of the messages:

And here is what these beautiful gals posted on their FB page:

  Turns out The Sparkle Club didn't come out of no where...

Through all of her sass, God has blessed Madison with the most amazing ability to make true and genuine connections with people.  In a world where everyone just keeps to themselves, Madison has opened the door to our (otherwise private and shy) family to meet new and amazing people.  We are so grateful.

So...  I suppose I have to end this very long and detailed blog with the realization that this WAS an amazing trip.  (Thanks to the Sparkle Club, we ended it on an exceptionally high note!)  It was not easy, and many parts were NOT fun, but our family has new and exciting memories we will cherish always.