Monday, June 27, 2016

Cast Off Vacation

With Allyn's new twelve weeks in and one week out casting schedule, we get four opportunities for water and messy play a year.  It's getting trickier since both kids are in school and we have to schedule echocardiograms when she is out too.  But we were successful in making a fun family trip to the beach.

Historically we have gone to the Alabama Gulf Coast.  We have been going there or the Florida Panhandle our entire lives.  But after last year, I feel pretty confident in saying I will not be going to Orange Beach in peak season ever again.  Too many people; too many umbrellas.  I like to see the beach and see my child.  So this year, we hopped on a plane for a quick trip to Sarasota.  We left after Nolan was dismissed from summer school on a Friday.  A quick plane ride down and car ride (while watching a beautiful sunset) had us to the hotel just in time for bed.

The next day we were ready to hit the beach.  We arrived a few days after a big storm or tropical depression passed through, but the water was warm and the sun was shining.  And little girl was CAST FREE for the first time since March.

 There was a lot of holding for the first hour.  It took about an hour to get her on the sand.
 And another thirty minutes after that to get her in the water.
 Nolan was happy to be there.
 The first night we headed to St Armand's Circle for dinner and ice cream.  Love these two cutie pies.
 Post ice cream we walked around and looked for lizards.
 Then we headed back to our hotel for a little fun.  On the lowest level they had all kinds of board games and table games.  The kids loved the idea of playing pool.  But we were all terrible.  It was a short-lived game.
On Day 2, we headed out early to eat breakfast and buy Ben a rash guard.  (He has a very fair complexion and got a "little" red on his back the day before).  More of the same. Beach and pool.  I have to hand it to Ben; he is more of a mountain trip vacation guy and likes to do stuff.  The beach is kind of the opposite of that (why I love it so).  He hung with us and entertained the kids.  And played with Nolan in the water for HOURS.

On night two, we walked from our hotel into downtown Sarasota and had a nice dinner.  Proof of a nice dinner.  Pinkies up.

After dinner was a stroll through downtown and some ice cream.  Allyn just wanted a cone with sprinkles.  No ice cream.

We headed back to our hotel.  It was so hot outside.  But we like hot when we are cast free

 (Real life:  Nolan being a ham, Ben loving on his babies, and Allyn wanting mommy).
 Side note:  A year ago, she wasn't walking.  So when I see pictures like this, I tear up just a little bit.
Day 3 at the beach.  MORE BEACH!!!!  What can I say, we like to do the beach when we are at the beach.

 I was trying take a sweet picture and he was treating me like the Pillsbury Dough Boy.
Later in the day, little girl and I were spent.  We enjoyed about 80 oz of water under some umbrellas by the pool.  We were both sweating buckets.  A thunderstorm came through right before we headed to dinner.

 Me and my guy!

On Tuesday morning we got ready to head home.  (I should have a picture of me in tears because that's how I felt about leaving such a fun trip with my people....and a warm, sandy, saltwatery beach).  He wanted his picture with this "tractor."

Please tell me I'm not the only person who hates planes with rows of three.  Because when you have a party of four, well......

Our cab ride home was the longest it has ever taken us.  Ben tried to make the most of it.  Selfie time.

We got home and Allyn didn't want to put the travel car seat away.  We left it out for an extra day.

She had a cardiology follow-up.  Her echocardiogram still shows some mitral valve regurgitation.  But it is the same or slightly better than it was in late-January and she is no longer on Captropril.

We definitely made it a great week without the cast!

Monday, May 16, 2016

What's Your Voice?

Finding something that I WANT to write about lately has been tough.  I love my children, but a "mommy" blog.  Meh.  I love food, but everything I make is from recipe or I do not care to recreate it.  I love clothes, but all I wear is gym clothes or things that are comfortable and who wants to read about that.  I work out, but I have no plan to show you or product to shill.  My life is pretty average.  Except that it's not.

I have a voice, different from yours.  My voice is as my children's advocate.  And they are anything but average.  And I don't mean that in a "special snowflake" kind of way.  My firstborn in stubborn and strong and rocks my world on a daily basis.  He is typical, but parenting him is not without its challenges.  I think his challenges are those that 95% of parents deal with.  We push through his challenges and keep loving.  I think for him, that really is the most we can do.

I often feel terrible for not thinking my children are equal.  But they are not.  I don't love one more than the other.  But right now, Allyn impacts my life more.  She just does.  She is younger and needs me more and she constantly has something going on that I have to really be there for.  She is still not terribly mobile.  So I feel a ton of guilt being with her more, talking about her, and life being centered around Allyn.  But then I realized...THAT IS MY VOICE.

I am the parent of a special needs child.  I hate saying it.  I hate hearing it.  I want her to be special.  But honestly, I don't want her needs to be special.  I want a child that is just like every other kid out there.  Performs on a average level.  But that's not who she is.  And so that is not the parent I get to be.  I had a friend once that said I was the person she was most likely to talk religious stuff to.  And I thought, "NO!"  I want to be the fun friend; the friend you ask questions about shoes or outfits, the friend you go grab a drink with.  But I'm not that friend anymore.  My life is not about these trivial things, and I have to stop pretending that is who I am.

I have become a mama bear.  I chime in on support pages about treatment.  I tell parents there is more they can do.  I want them to find answers for their children.  I want their children to have every possibility at success.

And Allyn, well, she is AMAZING.  I want to vomit when people say some child is destined for "great things."  Like every single kid out there is going to change the entire world on some radical scale.  And people really believe it.  My pessimistic soul thinks otherwise.  But then I see this child.  And in my gut, I know that she is special.  And she will be great.  And she will change the world.

And it TERRIFIES me!  I have been given a special soul to care for and nurture.  Her body is slight and not without it's many issues.  But her spirit is big.  She is magnetic.  She has overcome so much and done it without losing a sweetness and optimism that you could only find in the most pure of souls.  And I realize that she is THREE, but it's a special thing.  It really so perfect that words could not accurately describe this girl.

February was Heart Month (or whatever you want to call it).  And next month in June, we celebrate Scoliosis Awareness Month.  Scoliosis Awareness is still so near and dear to my heart.  It's where we began this roller coaster ride.  And in terms of awareness about what "having scoliosis" really means, I don't think people get it.  

So that's where this voice comes in.  Get ready for some obnoxious posts about the spine.  We need to be talking about it.  We need to be forcing early diagnosis.  And we need to be researching better treatment methods.  

Monday, May 9, 2016

A Birthday Party Fit For A Seven Year Old

This past Friday, we celebrated Nolan's birthday.  His school district had a half day and so we decided for late afternoon party of Friday with THE GAME TRUCK.  If you have not heard about the game truck, look it up.  It was exactly what he wanted.  Pretty much what every seven-year old loves.  So we invited a "few" of his friends and they had a blast playing video games. 

 I love that Nolan has some super sweet friends.  These boys are amazing.  They are kind and thoughtful.  And most of them are also VERY SPORTY. 
 I thought for sure they would want to spend every moment on the truck.  Well, about an hour into the party a group of about seven of them hopped off to play soccer in the yard.  Color me shocked that Nolan was one of the kids that chose an outdoor activity involving physical exertion over Minecraft. 
 I even got Allyn on the truck for a little bit.  But she was not loving the chaos that was sixteen boys...and two girls. 
There was pizza and Gatorade and cake and CHAOS.  But it was fun to have so many friends show up to celebrate with Nolan.  We are so fortunate to have made such amazing friends through school and soccer (and other sports too) and I'm looking forward for many more celebrations with this fun group. 

Thursday, April 28, 2016

Happy Seventh!!!

Today, Nolan turns seven.  It's quite mind-blowing when you really think about it.  Seven whole years of having him around.  SEVEN!?!?!?!?!  From the moment he arrived, he was a world shaker.  Not 10 minutes after he was born, he was awake and alert and wanted to know what was going on.  And that hasn't changed.  Laid back is never a description that would be used for our first born.

This is about 20 minutes after his delivery.  He hadn't even been officially cleaned off yet and he was so alert. 
 He is strong and strong-willed.  Ben and I joke that he is a lot like me.  No is not a word that either of us likes to hear and we are both super willful and usually push (hard) to get what we want.  (It goes without saying, we are both Tauruses).  But he is also so very sweet.  He loves to spend time as an entire family but loves his one on one time (usually with mom) too.  I think that's been the hardest thing about adding Allyn to the mix; she is a very needy child (not in the sense of emotionally, but physically).  He is an awesome brother to his sweet little sister.  I know that he sacrifices a lot for her, sometimes by choice and sometimes by necessity.  I have no doubt that she has made him one of the most compassionate loving kids around and their love has made him quite the warrior for her.  (They do still fight A LOT).
Nolan's First Birthday
 He is a handsome "little" dude.  I see a lot of Ben in his eyes and hair.  And a lot of me in his nose, mouth and chin.  Probably the thing most people notice about him is that he is not little at all.  I really think he will be bigger than Ben.  Right now he is 54" tall and weighs somewhere around 78 lbs.  He wears a size 8 (just barely) or 10 shirt and pants and a size 4.5 shoe.  Seriously.  It saddens me to think that he will probably be taller than me when he is ten years old, and I'm taller than the average female by several inches.

And he is so smart.  He blows us away with the things he remembers and the way he solves problems.  But like his momma, he gets frustrated when things don't come easy because so many things do.  That's something we have been working on.  Frustration is okay; giving up is not.

Right now he is playing sports: baseball, basketball, and soccer and also does Lego Club after school.  He was swimming every week for a while (almost two years), but stopped that in April.  He loves to play chase or tag, and he is absolutely obsessed with wresting.  He also loves electronics (what kid doesn't?).  And he has made a lot of friends in the "neighborhood" and recently they have just been playing in the yard after school.  When his friends describe him, the word most often used is "silly."  He can definitely ham it up for attention.  Which is funny because both Ben and I tend to shy away from a lot of social attention. But I love that he is different from us in that way.  

After school today. 
So HAPPY SEVENTH to the one and only Nola-mite.  One of the most incredible kids around.  So happy I get to call him mine.

Monday, March 14, 2016

Puzzle Pieces - Tetrasomy i(5p) Mosaicism

For years, I have suspected there was more to Allyn than the sum of her diagnoses.  Doctor after doctor.  Test after test.  And it turned up nothing.  One thing would be suspicious, but overall, things were really just inconclusive.  But as her mother, I saw the delays and her spine and then her heart and that she was super tiny and skin changes and preauricular pits and thought to myself, "There is no way there isn't some common thread here."  But no connecting medical diagnosis after no connecting medical diagnosis proved me wrong.

Turns out there is a common thread.

Tetrasomy i(5p) Mosaicism.

I heard back from her awesome geneticist last week.  The results of her skin biopsy that was collected back in December were in.  She has a rare genetic condition.  How rare?  Really.  He said there were only a few documented cases.  I suspect there are a lot more actual cases because it took this long for me to push and push for test after test and bring up issue after issue until we landed at the right place.  And honestly, most parents just aren't as insane as that.

But what does it change?  Not much.  We had already identified scoliosis, heart defects, growth issues, digestive issues, speech delays, motor delays, skin issues, and probably a lot more that I am forgetting.  She already sees many doctors and maxes out on therapies at school and through private facilities.  The only thing that all other identified patients exhibited that she has not are seizures.  It makes me nervous to think about it because those are a real game changer.  (That being said like everything else isn't...ha).  But managing life for a child with seizures is complex and I'm fine with our current level of complexity.

It's nice to have a diagnosis, but it doesn't change a thing about this amazing girl.

She loves her school.  (She also loved that bottle of sparkles),  I can't say enough about her school and all of her amazing teachers.  I was so worried last year about how she was going to adjust.  And I know it's been hard for her, but watching her learn and make those connections with someone who isn't mom or dad or Nolan has been phenomenal.

She is seriously the most adorable child I have ever seen.  Yes, I know I have a mother's bias.  But she is so animated and girly and loves to dress up and accessorize and it just makes me happy.  God knew this is one of my strange loves.  I have always loved fashiony stuff; I would watch Style with Elsa Klensch when I was in elementary school at my Mema's house.  And watching her choose outfits (and sometimes even shut down my choices) makes my heart all warm.

(As an aside, if you see me regularly and think "I only ever see you in gym clothes....or pajamas."  Well, it is more about practicality at this point.  I still love pretty clothes; I just can't justify buying them when I don't have a job earning an income and I wouldn't want to just let stuff sit in my closet.)

And those pigtails.  It's just too much.  At school they had to send home Valentine's hearts with compliments.  Most of her's were "I like your hair."  She also got "I like the way you dance during Move and Groove."  And "You are good at coloring."  I'm still trying to figure out how to do a French braid. Never ever learned.  She is still super wiggly and her hair is fine, but I'm sure one day before she doesn't want me to fix her hair anymore I will figure it out.

She loves her babies.  Really all babies:  doll or human.  I pray that one day she will know the joy of being a mommy.  That's one of those things that terrifies me.  What if she can't have her own babies and what if she isn't capable of caring for a child?  I know God knows these answers and I hope that she gets to watch her babies do all of the things I love watching mine do.  Her heart is so big and she is such a nurturer.

She also is quite the helper in the kitchen.  (Here she is "helping" make whipped cream).  She loves to bake and anytime there is something that involves pouring or mixing, she is on top of it.  

And she LOVES her brother (and his messy room...this was after Nolan and Ben got back from a ski trip to Colorado, thus all of the clothing all over the floor).  I know she was blessed with a strong-willed, big-hearted (and traditionally terrorizing) big brother in Nolan.  She loves to wake him up every morning and give him kisses and hugs before bed at night.  They can finally play together and when I hear the giggles, I know they were created for each other.  And that makes me so insanely happy.  

So we have this diagnosis.  And it really doesn't change anything.  I did find a couple of blogs/social media pages of a couple of other kiddos with the same diagnosis. I reached out, but didn't hear back.  Which is a little disheartening, but you never know where they are in the journey.  I just hope in the coming weeks, her geneticist can find the complete research papers and let us know if there is more that we need to be doing.  

In the meantime, I'll just continue to soak up all of her preciousness.  

(And kind of related, we saw her orthopedic doctor a couple of weeks ago.  Now that her heart is repaired and her sternum has healed, she will go back to serial casting next week.  Fingers crossed that will a little bit of growth she can see some positive results from casting and get her thoracic curve to a more manageable place and we can delay surgery for a long long time.)