Thursday, December 1, 2016

Eliza's Bumbo wheelchair



By now, I think most of our friends and family have seen Eliza work her wonders in her Bumbo wheelchair.




This is a piece of equipment that has been such a game changer for us, and I definitely wanted to dedicate a post to detailing how this chair has been so impactful. 






I first saw the concept of a Bumbo Wheelchair over on my friend Mary Evelyn's blog What Do You Do, Dear? Her son Simeon is Jake's age, was born with spina bifida, and was a quick pro in a wheelchair. He had this fabulous little seat that they referred to as a "Bumbo wheelchair" and I was fascinated. 

Does a real commercial wheelchair for a baby or toddler exist? Yes! It's called a ZipZak! And while it's super cool, it's also pretty pricey and not covered by insurance. Enter the Bumbo Chair, a handmade version for a fraction of the price. The name comes from the fact that a lot of folks use the infant Bumbo seat as the main seating base of the chair. 
Note: There are several other brands of this same style seat that might fit your kiddo better. Be sure to look around at the options and given them some room to grow! 



So what's this thing made of?
The base of the wheelchair is created with a large cutting board. The wheels were originally designed for a bicycle.  And castors are added to the bottom to create a tip option when the kiddo wants to reach and pick something up off the floor. 
The chair sits just barely off the ground - a similar placement to a child that would be walking or crawling themselves. 

So why is the Bumbo Chair important? Well, did you know that so much of our cognitive development is directly linked to our ability to move around and explore? Kids Eliza's age learn thru touch and feel and checking things out. If she doesn't have the ability to move freely in her surroundings, she will have a harder time staying in line with her peers that are learning thru play. 

The Bumbo Chair gives her that independence and freedom! 





I'm fortunate to have a father in law that took all of the plans I could find online, and created this amazing piece of equipment for her! 

Around ten months old, we started placing Eliza in the chair to see how she took to it. It's definitely a pretty big skill to master, but over time she went from just rolling the wheels forward and back an inch or two, to crushing allllll over the place. 

She has free reign of the house in her wheels, and we love that it gives her the ability to play with her peers at church, or cruise around the local children's museum. 






Since she's gotten the knack of this chair, we've seen her flourish! She's constantly talking, learning, and moving! It's amazing what a fantastic impact something like this can have!

I'm just so glad that we have it! We ordered Eliza's first real wheelchair back in September and have gotten exactly no where with it. This sort of wait is pretty standard for mobility companies, insurance claims, and custom built devices. We have no idea how long an approval will take and when we'll ever get a standard chair for all. All the more reason that she has this Bumbo chair as a way to get around!




  
Are you a interested in building a Bumbo wheelchair for a sweet baby you know? Start here! 

Tuesday, October 18, 2016

welcome to holland






When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy. And they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, ever, ever go away because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.






I don't remember where I was when I first read 'Welcome to Holland", but sometime between Eliza's diagnosis and her birth, this beautiful essay was passed along to me. It's truly a rite of passage among special needs parents. 
  
 Processing the idea of becoming a special needs parent or family is a hard blow. There are many things to grieve and let go of. There are a lot of harsh new realities to face. There is a new depth of anger, denial, and sadness to reach.

It is always turbulent.

But this is also a story of redefined beauty.

It begins in the moment where you find the strength in this new place - this new home that you'll inhabit forever. You find its purest and most miraculous qualities. You find its encouragement and inspiration. And the deepest and most meaningful of ways, you find that you yourself, have been changed forever because of this journey.  

Holland? I'm a big fan.




Saturday, October 1, 2016

spina bifida awareness month!




Before Eliza was born, I didn't have a great grasp of what spina bifida really was. Sure, I'd heard the term mentioned somewhere, but I barely knew what it entailed. I wonder how many of you could say the same? I hope that just witnessing our gal's story has taught you a handful of things! She is a little miracle and God is so wonderfully faithful to us thru her. 

Well, guess what? October is Spina Bifida Awareness Month! I can't wait to share some fun things! It's a month for us to remind folks what spina bifida really looks like, and how, as with all things in life, we can do better to love and support one another!



Tuesday, September 13, 2016

Ronald McDonald House {giving back one year later}



For Eliza's birthday, we decided to nix the presents. Let's face it, girlfriend did not need any more toys.  Instead, we thought her birthday might be a great opportunity to give back! 

So let me give you a little background...

Almost a year ago, J.B. and I lived in the Ronald McDonald House of Nashville while Eliza was in the Vanderbilt NICU. You see, once I was discharged from Vanderbilt myself, there we were in downtown Nashville. Our newborn was undergoing some massive surgeries and healing and nearby hotels running an easy $300 a night. That's where the RMDH came in.

Ronald McDonald Houses exist near children's hospitals all over the country. They provide a place for families to stay while their children are in the hospital, regardless of whether or not they can pay anything. You're given a private room and bathroom that reminds me of a college dorm. Every house has multiple kitchens, living areas, children's play rooms, laundry facilities, and computer access. Most nights, a volunteer group of some sort (companies, churches, etc) provides dinner for all the families in the house. 

Often times, J.B. and I would come dragging in the RMDH around 11pm to find leftovers waiting for us in the kitchen. After a warm meal, we'd crash and get up at 5am the next morning and, after grabbing some snacks in the kitchen, we'd head back to the hospital. The ease of the house is a perfect contrast to the worries and energy parents are leaving within the walls of the hospital. 



(August 2015)


Every family that has stayed at a RMDH  knows the incredible value of what they do there. Having your sweet baby in the hospital is gut wrenching enough, but Ronald McDonald House Charities does everything they can to keep families together without worry. 

This place has been such a wonderful part of Eliza's story, and it endlessly blesses so many other families every single day! So for her birthday, we decided to collect donations for the RMDH in Eliza's honor.  

With the help of my brother (my craftsman!), I created this box to sit out at her birthday party:
 





We shared our plan with family and friends and were so blown away by the excitement of them all! Even people that hadn't met Eliza asked if they could contribute!

Yesterday, during a short break from her spina bifida clinic, we dashed the two blocks over to the RMDH of Nashville. We were greeted immediately by the incredibly warm staff and even the house therapy dog, Sadie! She showered Eliza with kisses while J.B. and I were able to drop off our donation. A donation that would provide a family with a place to stay for 53 nights!! 53!!!



{September 2016}



I love this place.
I love what they stand for and what the do, both in the small moments and in the big ones! Ronald McDonald House Charities, you are amazing!


To find your local Ronald McDonald House and donate to this incredible cause, visit www.rmhc.org.



Monday, September 12, 2016

spina bifida clinic - one year check up!

Oh my, has it been a long day! As you guys know, every few months we head up to Vanderbilt Children's to see all of our specialists and get the a-okay with Eliza's ongoing care. 

These days are so so long. But it's great that Spina Bifida Clinic exists so that we can knock out all of these tests and appointments in one trip! So buckle your seatbelts, this update is all things medical-schmedical with Eliza's latest clinic visit.

We started the morning before dawn heading from our hotel to the Vanderbilt imaging area. Eliza had to have a full brain and full spinal MRI. Those are scans that require detailed imaging and take a fair amount of time, so she had to be under anesthesia. Anesthesia means no food or drink beforehand. Not our foodie baby's favorite thing. Thankfully, we got the early morning slot so she only had to be hangry for a few hours. 
By 7:30, she was taken back by the doctors and J.B. were sent out into the main hospital area to wait. My least favorite thing is being away from my gal pal so that was the longest two hours I've sat thru in quite a while. 






She did marvelously in the scans though. Per usual, she just had a bit of trouble coming out of the sedation. They think she has a tendency to wake herself up from it too soon, which leaves her really confused and upset. After walking around the outside gardens at Children's for a bit, we had our sweet girl back.

A quick snack break and we were back inside and headed up to Urology. With spina bifida kiddos, the bladder and bowels are often damaged in terms of function and nerves. Most folks end up having to be cathed every 3-4 hours in order to protect their organs or to simply function discretely in social settings. We're not quite there with Eliza, but still have routine scans to see how things are going. And for the first time, things didn't look very favorable.

Both of Eliza's kidneys showed residual urine that should have been emptying into her bladder. This gave our urologists quite a spook. Perhaps we might be looking at a less than optimal situation. Normally we have these quick scans at each clinic, and then Eliza has a big urology test once a year in which they assess the full function of her urological system. We aren't due for it for another 4 months, but our team decided to bump up the big test to next month. UGH. This mama is on edge, y'all. If the results aren't great, we'll likely be joining the cathing club. All normal spina bifida things, but still a really big deal! I can't even wrap my brain around what that looks like so I'm trying to just take this issue one day at a time!

After urology, we dashed up to Neurosurgery. We were elated to have an appointment with the same neurosurgeon that did Eliza's back closure and VP shunt surgery! We adore Dr. Bonfield and don't usually get to see him in clinic so this appointment was a treat. Even moreso with the results! Eliza's shunt looked beautiful! The chiari in her brain was asymptomatic! And her two spinal cysts had shrunk!! This is super uncommon! High fives all around!

Last, we headed to our official Spina Bifida Clinic. Since we'd seen a few of our docs at special appointments earlier in the day, our clinic visit was a bit shorter than normal. 
Orthopeditics was really pleased!
Physical therapy and occupational therapy were elated with her progress! They were so so impressed with all the things she could do at only 13 months! It was definitely a highlight of the day to see them dote on her and all of her milestones! Put all those hard hours of work right where they belonged - in the win column!

All in all, it was a very long, exhausting day. Our girl was such a dear, despite being constantly poked, prodded and bothered all day. As for the results, things weren't quite as perfect as we'd have liked to have had it. We were cleared for 6 months from all specialties except Urology and Gastrointerology, who we'll now see next month for further testing. 
Daunting, but I know God's got it all in His hands.

I'd also be completely remiss to not mention that we also had a few sweet moments in the day when we got to meet with a couple of other spina bifida families. Social media can be a pain, but it can also connect you to others in a fantastic way! So thankful for these other families that walk the road with us.  

Until next time, clinic friends!


Thursday, September 1, 2016

all about that brace!




You might have noticed already, but there's kind of a big deal happening around here... 

No, not another kid. 
No, not another pet. 
No one won the lottery, a new car or the Publisher's Clearing House. 

Please say hi to Eliza's very first set of HKAFO braces and first gait trainer! 





HKAFO stands for Hip Knee Ankle Foot Orthotic, representing the areas of her body that this brace is securing. It's essentially the full monty of orthotic bracing. 

So what's up with these? What do they do? How does it help? How did we get such a contraption? What does Eliza think of them? All questions we've been asked on the regular over the past month or so. Here's the tale... 

The goal for most spina bifida kids is to do your absolute best to keep them as close to normal physical milestones as possible. That can be rolling over, sitting up, walking, etc. Around a year, most babies are learning to stand and walk (typical age is 10-18 months), but with the limited gross motor skills, that's not often in the works for a child with spina bifida. 
The normal coarse of action is typically to start with some small foot braces around 12 months and also order a device called a stander to get kids up. A stander does exactly what it sounds like. You stick Johnny in it and he is supported enough to stand up. Over time, the lower body muscles that do work are strengthened, the kiddo becomes a bit more communicative, and there's typically a better understand of exactly how much function a child has. After that, PT will often start working on forms of mobility if they are possible. 

Well, we aren't normal. Surprise, surprise! While our team at Vanderbilt, our Early Intervention physical therapist, and our aquatic therapist were all ready to move forward with the above plan, there was one small voice that brought up another idea. That voice belong to our private physical therapist, Stephanie. 

Let me just say, sometimes having a bunch of therapists is really neat. They all have various approaches and they all teach you something completely different. But sometimes, its a total pain in the derrière. They all have various approaches and they all want you to do something completely different... Oy! It can be hard to navigate as a parent! This was where J.B. and I landed when Stephanie said that she'd really like to get Eliza in a pair of HKAFO braces and teach her to walk. 

Can I be honest? I thought the idea was a bit ridiculous. Of course my daughter with T12 level spina bifida wouldn't be doing anything remotely close to walking any time soon, if ever. I'm all about some positivity, but puh-lease lady. But... I like the idea of getting her up and standing. And I'd also heard horror stories about it taking months and months to get a stander device approved by insurance. The idea of custom made HKAFOs seemed a bit more convenient. We could work on standing in a variety of places! And they'd be built in a matter of a few weeks. 

My other therapists didn't like it. That's probably putting it mildly... They said she wouldn't tolerate them. That it would be too much for her to really handle at this age. That we'd be spending a lot of money for nothing.  But the more I mulled the two paths over, the more confident I felt about the HKAFOs. So we went for it.




First, Eliza was casted for her braces. The fit has to be perfect or else she'd get blisters, bruises, and pressure sores. The orthodist measured her and then measured her and then measured her. Finally he casted each of her legs in a similar manner to the way you'd cast a broken leg. Once dried, the tiny casts were cut off and were given to the builder with all of her measurements. 

Three weeks later, the day before her first birthday, we got the call that her braces were ready and to come on down for our first fitting! The fitting appointment took about two hours, but in the end, they did such a fabulous that we haven't needed to go back for any tweaking yet. 






They seem complicated, but are less than intimidating once you get the lay of the land. She has three velcro straps that go across each leg, and a waist strap around the belly. There is a locking device at both the hip and the knee that can remain in place for full standing support, or be unlocked to bend either joint.

After receiving the braces, I called our PT Stephanie and we got started with trying to teach Eliza what to do. Initially, it was just all about getting her in the braces and standing up. She'd stand at the coffee table, at the sofa, or over an ottoman. Basically anywhere possible to get here in an upright position and try to teach her legs to bear weight. 
She took to it marvelously! As long as she had some toys to play with, Eliza would stand for days!! That, in and of itself, was pretty awesome.






After her first PT appointment, Stephanie saw that Eliza was perfectly fine hanging out in her new braces. To my complete surprise, she brought out a tiny gait trainer. That's the itty bitty walker contraption you're seeing in the photos. It's meant to be pulled with you as you walk. Stephanie said, "Here, you can borrow this one until you get your own ordered. Let's get the ball rolling. I plan to have her walking with these before she's two."

Huh? What? Do I seriously pay this insane woman? 
My T12 spina bifida kid? Walking at all? Before she's even two?? 
Really though. Who ordered the extra side of crazy?? 

That appointment, Stephanie showed Eliza how to stand with the gait trainer, to put her hands down on the handle for support and balance. And just like that, Eliza caught on. 

Two days later, Stephanie unlocked Eliza's hip support and taught her how to use the muscles in her belly and bottom to straighten her body. And just like that, Eliza caught on. You can literally tell my twelve month old to "Tuck your booty" and she'll stand up straight in her braces.
To be clear, this is something that a month earlier, another therapist had told me that Eliza would never physically be able to do - stand up straight with her hips unlocked. 

Five days later, Stephanie said, "Well, she's got the goods. Let's learn to walk." I watched as she took Eliza and her gait trainer to the middle of a large room, unlocked her hips, and started showing her how to shift weight from one leg to the other. As she leaned on one leg, she was to move the other forward for a step, then shift her weight and do the same thing on the other side. 

And just like that, Eliza caught on.

A week later, Eliza was going down a hallway twenty feet long, playing with some toys and walking back again. All with Stephanie trudging right along behind her, hands on Eliza's waist to help remind her to shift her weight. Pushing the gait trainer? Standing up tall? The steps? They were all her own.
The line I heard last week of "we should have her walking solo by the time she's two" has now been altered to "we should have her walking solo within a couple months". Even our limitless physical therapist is shocked at how quickly she's catching on to everything. So exciting!!


Check out Instagram for a full video of Eliza doing her thing!


To be fair, its a lot to learn for such a wee tiny gal. Push the gait trainer. Shift the weight. Move the other leg. Step. Go again. Eliza definitely has her work cut out for her in the coming weeks. Right now, she's wearing them for a few stints per day and its all practice practice practice. Hopefully this gal will be learning to walk short distances by herself before long.
But she is already completely blowing us away!!




And without someone in our corner pushing our gal and teaching J.B. and I a thing or two, we wouldn't be here! We're so thankful to have taken the chance with these braces and seeing what this little ball of sunshine can do.

Go Eliza go!!!





Friday, August 19, 2016

eliza's first birthday


The day of Eliza's birthday party most definitely didn't go as planned. 
I really thought that one of the advantages to her having a summer birthday was that the weather element would be a bit less severe that Jake's March birthday. Wrong.


http://www.livealittlewilderblog.com/2016/08/elizas-first-birthday-invites.html



It was a rainy day and we, of course, had planned an outside party for our gal. We watched the hourly radar and decided to go for it. An hour before the party, tons of rain. But magically right as we were scheduled to get going, the rain clearly and the clouds opened up. There was a mad dash to set some things up in the yard as our guests all arrived and hung out inside. A few minutes later, we all headed out and finally got to celebrate. 

We served a dinner of hamburgers, chips, pasta salad and watermelon slices. 
For dessert, we skipped traditional cake and cupcakes and had a huge ice cream sundae bar! Yum!





Eliza enjoyed her smash cake the best. She snacked and shared with other people and just soaked up all the attention (and sugar).



We had lawn games like giant wooden dice, cornhole, and wooden dominos. Of course the kids all went nuts running around on the treehouse and swings. One of the things I so love about our house is the great space we have in the backyard. The shade of the trees is lovely, the privacy is perfect and the kids can all run and play. 




In lieu of gifts, we asked that our guests bring a donation for the Ronald McDonald House of Nashville. A year ago, they made an incredible impact on our family when Eliza was in the NICU. We knew that she didn't need any more toys and would much rather give back to help other families stay together while their children are receiving care at Vanderbilt. Our family and friends (as always) were so wonderfully supportive and we raised an awesome amount to take up to the RMDH at Eliza's next clinic visit! I'm so excited!





I hand dipped some Oreos as favors. And I'm not mad that I had a couple left over. 






I created this pallet display for Eliza's monthly pictures. It'd be great if someone could explain to me how this year went by so fast...





The downside? It was chaotic at best. I didn't get as many pictures as I liked because things were frantic getting started! But we all had a great time. And most importantly, our gal had a special day!





Maybe this party is a funny parallel to how this last year has been. Chaotic. Unpredictable. Crazy. Despite all our best plans. But ultimately it has been so wonderfully sweet. Surrounded by friends and family. And with the most precious, happiest girl we could imagine. 
What else could we ask for?





Friday, August 12, 2016

one year old



Oh my precious beautiful girl! 
What a joy you are! What an amazing year you have had!! 






I remember looking at your perfect face the day you were born, after months of anticipation and thinking, "this is it." 

If I could I would go back 365 days and tell myself so many things. I would tell myself that you are beautiful and that you are brave and that you are strong.






 I would tell myself not to be concerned with the physical limitations put upon you because we serve a faithful God and that you will be able to do so much more than any doctor ever described. 







I would tell myself not to worry about the "what if's" because you will bring so much joy to every person around you that those questions will pale by comparison.
 





I would tell myself to take it one day at a time. That there will be hard days but the hard days will be overcast by the incredible, amazing days. That the milestones that you reach will be tremendous and inspiring. That you will do so much more than I could even dream of. 

would tell myself to get ready for the most beautiful ride of my life. 





Eliza, you are our special joy. Happiest of birthdays, sweet girl! 



Wednesday, July 27, 2016

eleven months



I do realize that I'm about two weeks late on this post. 
I blame it on the birthday crafting y'all!




This girl. Eleven months. Bonkers!


This summer has basically been nothing but her skyrocketing in terms of mobility. Around 10 months, she began army crawling. It was laboring and let me tell you, there was a lot of whining. But in the last few weeks she's really gained her confidence and is just trucking along! She's even getting her knees under her a bit! We have no idea if that will actually turn into anything, but hey girl, go for it!

We've been working hard this summer at aquatic therapy and had our final evaluation this week! Holey moley has my girl come so far in June and July! 





Girlfriend loves.the.water!! She's the youngest kiddo they've ever had in the pool and she's just rocking it! Currently the fall schedule is full but we're hoping to get a spot ASAP.

We're still working on a bit more stability in sitting. For whatever reason, that's her weakness. 

But at the same time, she's way far advanced in some of her transition moves. Girlfriend learned how to go from laying down to sitting without a single lesson in the world. That's a BIG deal! 

Eliza was also just casted for her very first leg braces last week as well! She'll be getting HKAFOs (Hip Knee Ankle Foot Orthotics) in the next few weeks to be able to start standing and moving. Ekk!!





Other fun new things? She's learned to clap, waves at everyhing, can click her tongue, and says "mama", "dada", "baba" (brother, Jake), "papa", and "gaga (Gramma). She still sleeps like a champ and hates riding in the car.





One year is going to hold a lot in terms of spina bifida clinic and developmental testing. I can't say that I'm looking forward to it, but I know this girl is going to do amazing!

But one year. Already! 
We are so looking forward to celebrating her incredibly little life. She brings us the best joy and the biggest smiles!






Saturday, June 11, 2016

on aquatic therapy...






This post feels like its been quite a long time in the making.
Seriously though... where do I even begin?

I guess it was around the first of the year that I discovered the concept of aquatic therapy. It peaked my interest immediately because Eliza has always loved her bath time and being in the water. When there's a lack of strength and mobility, the water is like a whole new world! A world where moving her legs is easier, but where she also got a good workout against the flow of the water. I knew it was something I wanted to sign her up for later in the year. 

Fast forward a few months to my gal growing like a weed and summer time approaching. My brother lives just a few miles away and has a great pool in his backyard. It all seemed so perfect! I asked for a prescription for aquatic therapy from Eliza's pediatrician, who happily obliged! After turning it in, I waited for the call...




My grand plan was to get my gal into therapy once a week or maybe once every other week. The therapists could work with her and also teach me a thing or two about what sort of things we could do in the water to help build her strength. A couple of days a week I could take the kiddos over to my brother's house. It was a win/win! Happy, cooled off kids on a hot summer day and Eliza getting a fantastic work out. All in a free environment that I could easily control. 

Then life happened. 

I got a call from the local pediatric therapy group letting me know that aquatic therapy had a wait list liken to a Birken bag. It was indefinite. Months long at best. 
Also, my brother and sister-in-law decided to sell their house. Within two weeks of listing it, the house was under contract.

My plan was no more. 

But I picked myself up by the bootstraps and decided there had to be a way to make this work. I called and I called, but ultimately found out that there was only one pediatric aquatic therapist in all of north Alabama. So I expanded my search and was connected with a fabulous place in Nashville called First Steps. In addition to a whole slew of other special needs services, they had immediate openings for aquatic therapy. 
Hey, if the Mohammad can't go to the mountain, right?

Eliza and I took a day trip up to First Steps to give this thing a whirl. 
And boy am I ever glad we did! She spent about an hour in the pool with the physical therapist and loved every second of it. Eliza is incredibly good natured during therapy anyway (not a common trait in babies her age), but in the pool, she was even more at ease. I learned some great tips, got some advice on equipment, and overall, felt very assured in my decision to push for this therapy for her, despite the hiccups. 


 {at First Steps!}

We came home and I put the word out on social media - "We need a local aquatic therapist! Help!"  As wonderful as Nashville was, it wasn't something we could do super regularly because of the distance. And of course, our amazing friends and family did their bit. Over the next few days, I was contacted by all sort of people that had connections to the local pediatric therapy group. They were all touching base on Eliza's behalf! 

So we waited. Since brother's house was under contract, but not officially sold, we still had a few weeks of pool time left before we'd have to find a new place. At the recommendation of the First Step's therapist, I snagged an Otteroo and got Eliza working with me. 


{full video of my little mermaid on Instagram!}


Finally the call came! The pediatric group had an opening for the summer! It was only for the months of June and July, but they'd heard we were anxious to get in (ha!) and offered it to us! Come August, they would have to reevaluate all of the patients to see who would remain with the program. But hey, we'll take it!

Our first local appointment was a bit nerve wracking for me. Since we weren't officially "in", I wanted everything to go smoothly. Read: No baby of mine pooping in the pool or fussing. 
But despite my worries, the appointment was flawless. The therapist initially made the comment that Eliza was a bit young and likely wouldn't receive as much benefit at this age. But within a few minutes, she was changing her tune. Our girl did her happy, charming bit, where she showed the therapist how hard she would work, how fantastic her movement is in the water, and how sweet her demeanor is the entire time. To say the therapist was shocked would probably be putting it mildly. When our time was up, she was raving about how great Eliza had done and the incredible impact this service could have on her. She said she'd never seen a baby take to it like this! We were even offered  any other patient's cancelled appointment slot during the summer so Eliza could get more appointments in!

As a mom, leaving that first session left me feeling so accomplished. I fought hard for my daughter to have something that I felt strongly about. And while it wasn't easy, what I was pushing for was confirmed every step of the way. Being a special needs mom is a whole new world for me, and this first year has been a doozy!





So what's next? Well, Eliza will continue her regularly scheduled aquatic therapy every other week during the summer months. She'll be given extra appointments as well, as they come available. My brother is officially closing on his new house this week so we're hopefully shifting over to a YMCA membership to give me the opportunity to work with Eliza between her appointments. 
Come August, we'll be reevaluated. Currently we're second or third down on the official wait list, but I'm hopeful that we can snag a spot! If not, maybe these summer sessions will give me enough of a base to keep working with Eliza on my own until we're offered a place in the regular program.

I'm so proud of my gal, who works hard at everything she tries! What more can I ask for?
And I'm incredibly thankful for our friends and family that come along side us in advocating for Eliza. It's so awesome to have a "village" that supports our gal!




UPDATE: At the end of the summer months, our therapist was so impressed with Eliza's progress in aquatic therapy that she found regular place for her! Full time spot! Go Eliza!!!