Thursday, March 27, 2014

I Do Exist

I'm writing today because for the first time since December I am not completely overwhelmed by our medical travel schedule. Aria and I got home from Pittsburgh late last night with the excellent news that we don't have to return for another 3 months as long as everything goes well. That's not to say that everything is going great at this point but we are finally moving in the right direction.

Aria had her transplant in December and it went remarkably well. She healed slower than your average child would and we did have to use some systemic (rather than topical) treatments to help her heal but, for the most part, everything went off without a hitch. We continued our weekly trips to Pittsburgh (sometimes Akron if our PA physician was not available) and everything was going great.
We learned her eye is the most beautiful shade of blue
In the middle of this, I was driving on the interstate and some uninsured chick lost control of her vehicle, hit my SUV and sent me head on into a concrete wall. Fortunately I was alone in the vehicle and was the only one injured but my car was oh-so-totalled, my face and arms were oh-so-jacked-up-by-airbags, I got a ride in a gurney and an ambulance, and I'm pretty sure my spine will never be the same. I've resigned myself to the fact that my right arm is just always going to be a little numb, my head is always going to ache, and I'm going to always want to die about four hours into every car trip from neck pain. Having Aria around keeps me from complaining too loudly about this. Plus, I got a sweet new ride out of it all (shout out the Kevin for that one) so it's not all bad. Public Service Announcement: Get your uninsured motorist coverage, folks. It's so worth it. 

I took to taking these Road-Trips-Make-Me-Want-To-Die selfies.
In February Aria needed to have her stitches from her transplant removed and at the same time a muscle surgery to correct her turned in eye was performed. This should have been a very easy procedure...and, for some reason that only Aria's little body knows, it was a frickin' disaster. Her eye was swollen shut for about a week after the procedure but she was eventually able to open it and we got to watch her see WITH GLASSES to improve acuity for a day or two before it swelled shut again. We began switching up meds and would go through a cycle of being able to open her eye briefly and then having an extreme reaction to her topical medication. We'd switch the medication and repeat the vicious cycle again. We've been through some rough times with Aria but never have I seen her so chronically agitated or requiring so many comfort meds.

There were some really rough days
...but other days Aria just smiled her famous crooked smile through it all...

The hardest part about this is that we knew that with her new glasses she was seeing better than ever, was busier than ever, was more engaged than ever, and was happier than ever...but she couldn't open her eye most of the time.

The first time Aria could open her eye AND wear glasses was amazing. Unfortunately her eye swelled shut a little over a day later.
The world was a bit confusing at first...
...but then she decided she liked what she was seeing.
After about a month and exhausting all possible topical solutions, opthalmology got permission for hematology oncology to do systemic meds again. We are currently in the process of trying to find a STERILE compounding pharmacy that can create a specialized eye drop for Aria since systemic meds are truly a last resort for a child like Aria. This has proven to be an impossible task up to this point. Ridiculous doesn't even begin to explain it.

The good news is that, with the systemic meds, the swelling is down in Aria's eye. She is wearing her glasses and is enjoying the world through one eye with a small field of vision. She is learning to see better every day. She is smiling at Kevin and me. She is beginning to reach for toys. She is staring at her surroundings and and being all "You guys. Why didn't anyone tell me these things existed before?" She's like an infant learning to see the world and watching that happen for a child who we were told by the Big Fancy Hospital was completely blind and nothing could be done about it has been equally awe inspiring and validating.
For Aria, road trips are now all about seeing what's going on out the window.

...and when she sees Mommy or Daddy approach, she smiles so big that her eyes can't stay open...

...and even though she knows she looks FIERCE in her glasses...
...she still refuses to wear them at times. Just like a typical three-year-old.

Sunday, February 2, 2014

Aria Loves VIPS!

This February our family is doing a fundraiser for an organization that has made a huge impact on Aria's quality of life.  In December we raised funds for Make-A-Wish together with a local organization whose Board of Directors I serve on and now we would like to help Visually Impaired Preschool Services, Inc.(VIPS) of Bloomington, IN.  I've tried to stay away from asking for money through this blog but I do believe this to be an organization many of my readers would love to support.

The link to the ARIA LOVES VIPS fundraiser is right here

Those of you who are in the club can certainly understand what it is like to want to write a big check to an organization which has made a difference in your child's life. The unfortunate reality is that, for families like ours, after paying all of our typical household expenses each month, any extra money we have goes to paying medical bills that we will never EVER EVER be able to pay off.  We simply can't give back to these organizations that provide life changing services to our children in the way we would like.

Doing these small fundraisers helps us to give back and helps us to let the organizations know just how much we appreciate them. When you have a child like Aria, the people you rely on for help rarely offer anything in terms of hope.  VIPS was the first and one of the few organizations to offer hope to our family...and hope is invaluable.

Please consider giving. Every dollar helps.  
Here is why Aria Loves VIPS
Those who know our beautiful little Aria's story know that our family has traveled a long road in trying to help her learn and grow into the best Aria she can be.

When Aria was about 4 months old we were in a desperate state. Aria cried non-stop and we worried that our child would never play, learn, recognize her family, or even know that she is loved. It was at that time that a wonderful woman named Annie from Visually Impaired Preschool Services of Bloomington, Indiana came into our lives.

Miss Annie has extensive experience working with deafblind children and was able to help us to understand what the world must be like for Aria. Within a month of meeting Annie and implementing her suggestions, Aria was playing, smiling, laughing, and differentiating between the touch of her parents. Miss Annie changed Aria's life and changed our family's outlook and understanding of what the future could hold for Aria.

The mission of Visually Impaired Preschool Services, Inc. (VIPS) is to offer appropriate services to infants, toddlers, and preschoolers who are visually impaired or blind and to their families; to maximize each child's developmental potential through direct services, advocacy, and community education. Through Aria we can see that VIPS of Bloomington has not just accomplished their mission but has surpassed it by leaps and bounds.

One of the things that VIPS provides to the families with whom they work is toys and activities that will help their individual child to develop and feel safe in their environment. These items often include homemade PVC playframes, kitchen whisks (a favorite toy of Aria's), spoons, and items with many different textures and scents.

During one of our family's VIPS visits, Miss Annie suggested a product that she had come across called a Scentsy Buddy. She thought that having a familiar stuffed animal with a familiar scent might help Aria to feel more comfortable during her many hospital stays, doctor appointments, and family trips...and boy was she right!

Aria's Scentsy Buddy keeps her company during all hospitalizations
Having a familiar buddy has helped to soothe Aria during many times of uncertainty in her life (can you imagine what new experiences must be like for a child missing their vision or multiple senses?). We would love the wonderful people of VIPS to be able to share the gift of a Scentsy Buddy with each child on their caseload.

Thank you for helping Aria and our family to give back to the organization that has given so much to us!
Daisy always makes sure Aria has her Buddy and her pig in the stroller with her!

Aria's elephant is the perfect carseat companion on our weekly trips to Pittsburgh to have her cornea checked!

- Julie,the Scentsy consultant we've asked to help with this fundraiser, will reinvest profits into this project.
-Aria's Mama, Rachael, will reinvest all of her "hostess rewards" into purchasing more Scentsy Buddies and Scent Paks for children receiving services through VIPS.
- Donating money through this "Aria Loves VIPS" GoFundMe site will allow us to purchase these Scentsy Buddies and Paks for VIPS without paying sales tax or shipping. Your donation will go further!

Monday, January 13, 2014

3 years old - It'll be okay

You guys. Aria turned 3 years old yesterday.

For her birthday we partied in the complex care unit at the Big Fancy Hospital. Aria has been inpatient for three days. She should be out soon.

I haven't written much lately because I've been super busy traveling back and forth to Pittsburgh every week to have Aria's awesome new cornea checked. That's right! Aria got her cornea transplant! Our weekly trip combined with multiple fairly useless appointments at the Big Fancy Hospital have made for one very busy mama and daughter. I haven't even gotten our Holiday cards out yet.

I will write more about Aria's cornea later. For now, all I have to say is that watching my daughter learn to see has been nothing short of miraculous. Aria's transplant couldn't have come at a better time for me. I was at a point where I was ready to just stop advocating for my child all together. I needed this transplant to remind myself that a better quality of life for Aria is still worth fighting for.

I selfishly needed this transplant to remind myself that we will all be okay. Please enjoy this video of our family's 2013:

Happy New Year.

Sunday, January 5, 2014

First Snowgal

Somehow Daisy made it to four years old without ever building a snowman.  We've done lots of sledding and playing in the snow but, for some reason, we never seem to be out frolicking when there is packing snow. 

So here is our first-ever snowgal.  We think she is quite stylish.

And, of course we did some sledding too.  Daisy rode in her too-small-for-her sled down our driveway and then I played sleigh-horse running up and down our road pulling Daisy behind me as she yelled "faster!"  A painful reminder that perhaps I should have resolved to start running again this new calves are already killing me!

I hope those of you who are getting hit with the snowpocalypse take some time to enjoy it with your babies.  There is nothing more adorable than watching your kid play in freshly fallen snow. 

Sunday, December 8, 2013

Crossing Borders

In other not-so-ticked-off news:  Aria made a pretty big move tonight.  She finally navigated her way all the way out of the living room, through the hallway, and into her bedroom.  And I just happened to capture her last couple of movements before she made the brave move to cross the border onto a different type of flooring. 

She really is amazing, no?

Wherein I Go on a Rant About Respecting Time

Because we went on a Disney vacation making us unavailable for a little over a week I had a lot of catching up to do with Aria's care in the last week.  Most of it was stupid stuff but it all takes up so much time.  One day it was a GI study, then next was blood, then it was urine, then it was an endoscopy coupled with bone marrow, then it was urodynamics, bladder, and renal stuff.  Much of this didn't even end up getting done because a simple scheduling mistake was made by one physician which really isn't a big deal in and of itself.   

Note to every physician ever: don't try to slide me under the bus to your colleagues and act like I was irresponsible when I can pretty easily prove that I followed through on my part in a timely manner.  I quit being "the nice mom" a few months ago when I realized that the hospital which I ironically refer to as "The Big Fancy Hospital" on this blog had made a pretty epic medical error when it came to diagnosing Aria and, even though everyone knows it, not one person ever even said "sorry".  I'm still pretty lenient with the individual physicians.  I figure they can't help that they've been trained by their risk managers to be a bunch of unapologetic douche-lords but I will totally call you out if you ever try to cover your ass by blaming me...especially when it has to do with something as simple as a scheduling error. Just say "I'm sorry" not "I'm sorry your frustrated" just "I'm sorry".  It won't kill you. 

Another Note:  Don't get all condescending and try to explain to me how procedures aren't emergent when I'm simply trying to get more than one thing accomplished at once.  For example: If we are at the hospital for a GI study one day and you suggest we get blood work because of my child's bruising and skin breakdown but then realize that no one is easily available to access her port but I continue to try to get the blood work done the same day, I'm not doing that because I think we are having an emergency.  I'm simply trying to not have to take another day out of my child's life to get labs.  I do not need a "this isn't an emergency" speech. It's annoying and I feel like you're not respecting our time by just being like "This isn't an emergency so why don't you just waste a whole day tomorrow dealing with our cluster-fuck of a hospital system".  I'm not acting like things are an emergency.  I'm simply trying to lessen the number of interactions I have with our only in-network choice for a children's hospital. 

You see, when I want to do just one thing for Aria, it takes up an entire day no matter how trivial the thing is because of the drive alone.  Since Daisy is receiving 30 hours of ABA therapy per week, plus attending Montessori a couple afternoons per week, plus receiving additional therapies, that puts a huge stress on our family.  It either means that Kevin has to leave work early to shuttle Daisy around and then go into work on the weekend to catch up or I have to involve one of my friends, all of whom help our family way too much, in shuttling Daisy around. Each trip also costs about $20 in gas, $2 in parking, plus the cost of food (which I realize could be easily defrayed by simply packing some snacks). Basically, the transportation cost of five interactions with the Big Fancy Hospital could buy Aria that pig she likes so much. 

Aria just realized she could have had another pig.  Aria is not amused.
Seriously.  The next physician to tell me something is "not an emergency" when I'm simply trying to get more than one thing accomplished on one day is getting kicked in the shin.   I'm just trying to make our lives less complicated.  If you can't understand that, then maybe you haven't achieved your douche-lord status through risk management training after all.

Rant over.

I feel much better now.

Friday, November 8, 2013

Defying Gravity and Funny Pigs

Sometimes the perfect song comes on at the perfect time.  Sometimes that song happens to be a show tune.  Sometimes I don't even realize I'm singing along.
I love watching Aria spin herself around.  She would do it all day if we'd let her.

But do you know what I really love?  Aria's laugh.  And her new switch operated piglet offers her plenty of opportunities to laugh and therefore plenty of opportunities for everyone to smile (the pig is available here and the switch that she is pressing with her foot is available here, for those of you who are interested).
And, to be honest, this post is just a way for me to get out of talking about other things.  Daisy has been going through some tests that horrify me...Daisy has also been doing really well with full-time ABA and is working toward transitioning to SLP group without a therapist and is doing two afternoons per week at Montessori with a therapist there just to help her transition to the new setting...and then there is what I call the "autism survivors guilt" that comes with having a kid who does things like talk and occasionally look at you...and there is the whole my-kid-still-doesn't-have-that-transplant thing going on...There is stuff going on that I just don't want to talk about today.

I'll write about all of that later. For now, you all should just enjoy how adorable Aria is.