Failure to Thrive

FAILURE TO THRIVE - it’s one of the first diagnoses that a parent of a child with special needs might receive. In the medical world it simply means decelerated or arrested physical growth, typically associated with abnormal growth or development, but to all of us it means just what it says - my child is failing to thrive. 

Failure: ‘Lack of success’

To

Thrive: ‘To prosper or flourish’

As a parent of a child with special needs, you may hear it often. You’ll hear it at their pediatrician appointments, you’ll hear it noted in morning rounds during hospital stays, and it will forever live in their chart when you go through their online medical history.

Front and center: ‘failure to thrive’.

If you think about what you want for your child, whether they’re typical or not, “thriving” probably sums up the one singular thing you want for them. You want them to be happy, you want them to succeed, you want them to make friends, be included, and just enjoy life - you want them to… THRIVE. 

I remember first hearing Hattie’s diagnosis of failure to thrive which came almost immediately after she was born. Now, again, this simply meant she was smaller than average and had some catching up to do, but hearing those words felt like a complete punch to the gut. Almost seven years later, it still appears on her list of diagnoses - but what would I consider Hattie to be doing? I’d say she’s thriving. She’s happy, she’s healthy, her seizures are managed, she’s following her own growth curve, she can communicate to us through her eye-gaze talker, and she can light up the room with just a smile. 

While advocacy, equipment, and taking the right steps in terms of therapy, medication, etc. are all important, we’ve decided to really take a step back (or forward) the past couple years and focus on Hattie’s happiness. This has meant things like pulling her out of a special needs school and surrounding her with typical peers, saying ‘no’ to some therapies and appointments so she’s not being poked and prodded all week, and even deciding to make living near a Childrens hospital NOT a priority and moving out somewhere where our family can breathe and just be together.

It’s so easy to get inundated with doing all the therapies, all the doctors appointments, all the equipment, all the at-home stretching/diets/extended therapy/standers/feed training/home adaptations. Often as parents we will ask ourselves, “Are we doing enough?” We want Hattie to have the opportunity to walk one day. We would love for her to eat and feed herself without needing a g-tube. We want her to be able to communicate with us and others, and, yes - we would love for her to be able to go potty on the toilet one day. But most of all - we want her to be happy, healthy, and we want her to know that she is loved more than she could ever fathom. Because of these priorities, we’ve learned that it’s ok to take a breather sometimes. It’s ok to take a break. And while we’ve been in this new season of life with our girls, we’ve truly thrived.

If you’re familiar with our family’s journey, then you’re also aware that we brought our youngest daughter, Neela, home from India in Summer 2022. While she is cognitively typical (and brilliant, by the way), she does have a physical disability called arthrogryposis multiplex congenita, a condition involving muscle and joint contractures as well as clubbed hands and feet. She just conquered her first visit to the operating room last week, getting surgery on her legs and feet. 

Whether you just found out your child’s diagnosis or you’ve been parenting a child with special needs for a while, I hope you find comfort in knowing that you’re not doing this alone, it’s ok to take a break, celebrate the “inchstones”, and know that your child and your FAMILY can thrive no matter the diagnosis that’s written on a piece of paper. 

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It’s been a while since we’ve posted a blog here and for that, we apologize. The goal of this blog originally was to keep everyone apprised of Hattie’s journey and while it still is, it has pivoted into being more of an informational resource for families receiving a 1q43q44 chromosomal deletion syndrome diagnosis for their child. If you Google “1q43q44”, not much comes up… there are some published research papers, some disheartening info of ‘worst case scenario’ outcomes, etc, but a picture of little Hattie and “Life With Hattie” is right there in the midst of all the noise and for that, we are grateful. If your child has just received a diagnosis, please feel free to reach out to one of us on Instagram or leave a comment on the blog. We are still along for the ride on our own journey and have a lot to learn. We hope we can help encourage you to embrace this new life - whatever that may look like for your family.

-Abby and David Heasley

Some Catching up to do…

Where do I even begin? It has been a CRAZY 6 months… I’ll try to cover the big things, but a lot of life has happened and I definitely might miss some details!  Just know that every week we say “gosh we need to update the blog…” and then life just gets crazy- I know y’all get it!

Seizures & Keto Diet

In the fall of 2020, we felt like we had exhausted all efforts with Hattie’s seizures. She was averaging about 100+ myoclonic seizures a day. And then having 1-2 BAD focal seizures (turn blue…unresponsive…limp etc..) a week, sporadic absence seizures, and every once in a while, cluster seizures (combo of focal and myoclonic).

We were sad. Our little Hattie was struggling, and it was just hard on everyone.

One road we hadn’t explored yet was the Keto diet. This is an “old” seizure remedy that has been around for years. We were told by our Neurologist… it’s a 50/50 chance that it would help. But before starting another serious med, we figured we would give Keto a try.

It was super intimidating at first. ALL sugars had to be eliminated. Which meant most of her liquid medications needed to be converted into solid pills which included crushing, and all these new kinds of tricks to administer meds. We had to measure formula, give extra water, and do night feeds… it just all seemed so intense to us, but we had to try it.

It was a rough start.

We had to jump back and forth between ratios of keto and regular formula… lots of appointments with her Keto doctors and dietitians and lots of barf. I’m talking LOTS of barf (Keto can be really hard on kiddos’ tummies at the beginning).

You wouldn’t believe how much stuff has sugars in it. Our lotions, bath soaps, medicine, sunscreen, creams… the list goes on. We had to perform some major alterations to our everyday routines.  

After we got it down...and perfected the ratio… it was honestly pretty easy. It just became our new normal.

After being on Keto, Hattie’s myoclonic seizures have decreased from 100+ per day to 10+ per day… her BAD focal seizures have decreased from 1-2 per week to maybe 1 per month, usually when she’s tired, has a cold, or is way over-stimulated.

We are thankful.

March 11, 2020:

Just when we thought Keto was eliminating all of her seizures, we got a call from Hattie’s school. “Hattie had a seizure for almost 6 minutes… she’s okay… we did have to administer emergency meds, and we are having a hard time keeping her oxygen levels above 70’s & 80’s. We’ve called an ambulance, can you be here soon?”

Luckily David was around to take Shiloh- so thankful for his job and for his extremely flexible hours-… I drove 100+ mph in my minivan down 470. A normal 25 minute drive took me 15 minutes. I pulled up to Hattie’s school and saw firetrucks, ambulances, and police cars… Seeing the blue and red lights brought back some bad memories. That was my baby in there. All of those people where there because of my baby. I pulled in, halfway through a handicap spot, and the lines…. Hattie’s nurse and teacher’s assistant greeted me at the front of the school. They took my hand and ran with me inside.

There was a line of staff greeting me. For one of the scariest moments… Hattie’s school made me feel so safe and comforted. I stepped inside Hattie’s school for the first time- because of COVID. I walked into the nurses room to see Hattie, limp as could be, pale faced and blue lips… and her sweet teacher cradling her as I would myself. I immediately started crying, and grabbed Hattie. If I’m honest, she didn’t feel alive. Those emergency meds knocked her out. But as I held her I could feel her little chest rise and fall in my arms, and it gave me a little bit of comfort. As I looked up… I saw about 15 people staring at us. Paramedics, school nurses, Hattie’s therapists, teachers, and other school staff. They asked me so many questions… I don’t remember a lot… but I do remember Hattie’s teachers and everyone else at school SEEING me struggle, and stepping up in that moment. Hattie’s nurse talked to the paramedics, and walked me to the ambulance. She said she was praying for me (she goes to our church) and was just so comforting. I will forever be grateful for Hattie’s school. We are NEVER leaving 

Once I was in the ambulance with Hattie… I felt safe. They were originally going to drive me to the closest hospital and I said “nope… drive us to children’s please”… and they said “but that’s 30+ minutes away..” “Yes I know.. it’s okay. They know us there.”  

It’s amazing how much you STILL have to advocate for your kids even in these cray circumstances.

Anyways.. Hattie ended up being okay. We spent the night in the hospital, and Sho Sho & Daddy came to wave to us from the window.

I started taking more diligent notes on my phone of when Hattie had her seizures, what they looked like, what was she doing that day etc. Most of the time she has a focal seizure if she is getting sick but lately we’ve noticed that it has a lot to do with the barometric pressure and the weather. Hattie tends to have the most seizures in the spring, when the weather is wonky.

HIPPOTHERAPY:

Hattie has been doing hippotherapy for almost a year now!

Hippotherapy: Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input.

Since starting Hippotherapy we have seen a huge improvement on Hattie’s core control, communication, and fine motor skills. Hattie tells her horse, Pickles, to “go” by looking at a card that says go.

SCHOOL:

We still adore Hattie’s school. Her teachers said that she is overall happier and more attentive this year. I credit that a lot to her seizure control with the Keto diet! I also think she’s just growing up, and her stamina at school has just been a lot better.  

SPEECH:

Right now we are working on getting a communication device for Hattie. She is using something called “eye gaze” technology where she looks at an iPad at different choices, and is able to tell us what she wants just by looking at it. She is BLOWING US AWAY with this. She is starting to get really good at the words “go”, “stop” ,”more”, “all done”, “iPad”, “book” and of course “Little Baby Bum” (Her favorite show).

HIPS:

Now for some rough news - We found out a few months ago that Hattie’s little hips are dislocated. This is common for kids that do not walk, but we were really bummed to find out this news. We met with an orthopedic surgeon and he basically said that if she doesn’t have bilateral hip surgery, she will never be able to walk. She could also develop pain when she’s older and it can get really difficult to manage. By getting the hip surgery, we are giving Hattie the chance to walk. Will she walk? We don’t know. But at least she can have the opportunity to try, and we really do believe that someday she will. Surgery is set for October 22nd at Children’s. We have been told that this is probably the biggest surgery that Hattie will ever have. It’s about a six-week recovery time, and it is not easy. Please joining us in praying that everything involving the procedure will go smoothly, for pain to be managed afterwards, and that God can ease our nerves leading up to surgery day.

All our love,

Abby & David

The Strongest Sister

It had been a hectic evening flying solo with the girls. David was out of town for work in Vail for the night and I was rushing to feed both girls and get them bathed and ready for bed. Hattie had been pretty fussy all evening — she has nights like this from time to time.

Shiloh, Hattie, and I were laying in Hattie’s bed reading one of their favorite books - “This Old Man” (a sound book from the 90’s when I was a little girl). I was trying hard to be extra animated to try and get Hattie to calm down. Then all of the sudden she stopped crying. I looked over and she had gone limp into one of her scary seizures.

I immediately scooped her out of her bed and ran into the living room. We had just been prescribed a NEW emergency med. My brain was a little fogged… trying to remember each step, and exactly what the dose was, in case I had to administer them. Usually David is here to talk me through things.. but this time I was alone.

“Hattie… Hattttie..it’s okay baby. Mommy’s right here.”

I was walking around the house with her little body in my arms, just waiting for a glimpse of a cry or a smile to let me know that she had stopped seizing. I checked her temperature and it was a little high (fever is always a trigger for a seizure). I fumbled through empty bottles of Tylenol and ibuprofen, trying to find the right syringes and a clean piggy tail to give it to her through her g-tube.

Finally, a little cry, and a big cheesy Hattie smile. She was like, “Hey, mom, what’d I miss?!” Thank goodness I didn’t have to give the emergency meds. Only a few minutes had gone by but it seemed like an eternity. I sat there on the couch, cuddling my little Hattie, thanking God that it wasn’t a long seizure. All of a sudden my heart stopped. “Oh no, I had forgotten about Shiloh”. I ran back into Hattie’s room, expecting something awful since it was SO quiet in our house.

I turned the corner and see little Shiloh sitting up in Hattie’s bed, reading “This Old Man”.

 I’m not going to lie, I got pretty emotional and had some major “mom guilt” after this. How could I just leave her? She’s only 14 months old, and I just left her alone!

But then I stopped. God made Shiloh our daughter and Hattie’s sister. He built her with a little extra strength, independence, and some extra spunk. He made her STRONG.  

Tagging along to appointments and therapy sessions, listening to the crying and crazy noises around our house sometimes and seeing her Mommy and Daddy react during emergency situations with her big sister. I’m just so proud of her, and so thankful Hattie has her little sister, Shiloh, in her life.

-Abby 

October Update

I noticed that we’ve started a trend. All of Hattie’s BIG appointments tend to fall in October. I think it’s because she was born in May… We received her diagnosis in July… and then there’s usually about a 2-3 month waiting period to get in as a new patient which = OCTOBER. Then we have annual visits with a lot of doctors and all of the big appointments tend to fall around October.

 Anyways…

 Lots of big things happening over at the Heasley household.

Seizures

We had been noticing a lot more seizure activity with Hattie over the past few months. We changed her meds up a bit, but we noticed the seizures just seemed to get worse. Her neurologist  decided to schedule a 24-hour EEG so they could monitor her little brain for an entire day. Those that are not familiar—an EEG (electroencephalogram) is where they put tiny probes on Hattie’s head to detect her brain activity. If Hattie has any kind of seizure, it is detected on the EEG. In the past, most of Hattie’s EEG’s have been fairly normal, but this time many seizures were detected.

 As I was sitting with her in the hospital room for 24 hours, I had a button that I was told to push every time I saw any kind of seizure activity. There was also an overhead camera filming her, so the doctor old me to talk out loud with anything I was seeing…

“Small jerk, myoclonic seizure. Lasted 1 second.”

“She seems to be zoning out…I think this is an absence seizure… not responding to me… lasting around 5 seconds.”

Then a big one… “She is turning dusky blue…She is not responding…her lips are smacking…eyes glazed over…lasting 3 minutes.”

As I type this out loud I’m realizing just how numb we’ve become to Hattie’s seizures. I didn’t even freak out when she was having these seizures. I just knew that the doctors needed the information and I needed to tell them what I was seeing.

 A couple of weeks later…

 We got a message from our neurologist saying that we needed an immediate visit with her.

 As we suspected, Hattie is having hundreds of seizures a day.

 Her neurologist suggested that we wean off of one of her seizure meds, and move forward with a Ketogentic Diet. I am still learning about the Keto Diet and how it helps with seizures…but her doctor said that she is a perfect candidate with the type of seizures that she’s having.

I’m trying not to think about the future and the “what if’s”. I KNOW that God has GOT Hattie. He has the most perfect plan for her. We have trusted in Him so far, and I know that whatever happens will be the best, for her.

School

Hattie’s school has been nothing but amazing. Every day I’m blown away by the attention they give her, and by how much they truly know her. Her teachers and therapists are actual angels, and I’m so very thankful that we ended up where we did.

Orthotics

No huge news here, but Hattie got new AFOs (Ankle Foot Orthotics)! These will help her little feet stay in line while she’s in her stander or doing any kind of weight baring activities. We also surprised David with some Dallas Cowboys printed AFOs!

Thank y’all for following along with our journey with Hattie. We love you!!!

 -The Heasley fam

The Sweetest Gift

About a month ago we went to Hattie’s speech therapy center to try out a new device. It’s called the Explorer Mini, by Permobil. The Explorer Mini works kind of like an automatic wheelchair, but it doesn’t quite have all the complicated pieces. It’s simple, fun, and really just a way for children to be able to move around on their own by using a joystick.

We showed up for our appointment with Hattie’s Therapist, and the Explorer Mini Rep showed us this new cool thing. I sat Hattie down in the chair, and she was immediately intrigued. She put her little hand on the joystick, and starting cruising. She smiled, giggled, and looked around at the room. I cried. It was the first time i had ever seen Hattie move around, on her own.

I looked at the Rep and said we are definitely going to get this. Medicaid covers it, right? “Nope.” Since Hattie had just received her wheelchair, they wouldn’t cover something else like this. Insurance and Medicaid puts this in the “wheelchair” category, even though it is clearly not a wheelchair. I was super bummed…and when she told me the retail price my jaw dropped to the floor. There’s no way that is in our budget right now. Disappointed, we left our appointment.

I went to bed dreaming about Hattie riding around freely in our house. Maybe we’ll do a big fundraiser? A Go Fund Me?

A couple of weeks passed, and life got busy. I started thinking…maybe she doesn’t need it… It would be REALLY amazing…but maybe we don’t need it.

Then I got a call from our medical device rep at NuMotion.

We had recently ordered a bath seat for Hattie, so I was expecting her to ask a question about that. I was driving to Breckenridge with the girls when I answered her call. “Someone anonymously donated the Explorer Mini to Hattie.” I couldn’t. even. speak. “WHAT?” “What do you mean??” “Like someone just bought it for us?!” “YES! Someone will be by to deliver it in a couple of weeks!”.

I bawled my eyes out the entire way to Breckenridge. I just didn’t even have words. How could anyone be so generous? And to anonymously do this! Absolutely amazing.

I just want you to know…whoever you are…that we are so grateful for your generous gift. Not only is it amazing to see my daughter freely move around the house for the first time, it is just amazing knowing that we have such an incredible support system. We LOVE you. We are SO thankful. And God is SO GOOD all. the. time.

Thank you,

The Heasley Family

Heasley Mother's Day Camping Trip

Hi friends! I know you all have been dying to know how the camping trip went… ha! Even though this blog is a couple months past due… here we go…

I’m not going to type out all of the details, because David was gracious enough to put together a video. BUT I do want to say, despite how our camping trip ended, we are not afraid to go again! We honestly had SO MUCH FUN. Do not be afraid to go camping with your babies. The outdoors was so refreshing, and overall we made some really great memories as a family.

There were basically two worst case scenarios where we said we would go home.  

1.     Hattie has a seizure or there was some other medical emergency

2.     The girls threw up

 Well, worst case scenario number 2 happened. All 3 girls threw up…yes…all 3 of us.

Looking forward to our next family camping trip— with hopefully zero puking ;)

Abby & David

Dirty Baby Socks

Dirty baby socks. 

I’ve had babies in my house since 2017 and this is the very first time I’ve seen dirty baby socks. 

Shiloh has been running all around the house in her walker and she is usually barefoot, but today she had on socks. As I was changing her into her pajamas tonight, I took off her socks and saw that they were dirty. (This post is not about my floors being dirty. They’re always dirty... we have 2 dogs...and well, there’s just always a lil’ dirt on our floors)

Anyways... I paused and looked at these socks and held them. I almost started crying happy tears because I feel like it is the start of a new chapter for us…

a chapter we’ve never experienced before…

Hattie has never put her tiny feet on the ground and walked. But her little sis is already starting to cruise around in her walker at 8 months old. 

Dirty baby socks... I never thought I’d say I’m super excited about that. 

But I am. ❤️

I thank God every day that Hattie has her little sister, Shiloh, to look up to. Don’t ever take dirty baby socks for granted…They’re a sweet, stinky, precious gift.

-Abby

We've Got Some Catchin' Up To Do

Wow. 6 months  FLEW BY! We have had a lot going on over here at the Heasley casa. This blog is simply going to be a “catch up on our life” blog… well, mostly Hattie’s life... so here we go!

Hattie’s New Wheels

Hattie got her wheelchair! Her “Barbie Jeep”, as we call it, arrived in December. The first time Hattie took a spin was at one of our MOPS meetings. I pulled up to Red Rocks Church in our minivan and whipped into a handicapped spot. There were a bunch of moms out front that kinda took a second glance like…”you can’t park there”…until I pulled out our handicap placard, which I felt a little weird using for the first time.

It took me about 10 minutes to unload the wheelchair, put Hattie in, then rig Shiloh’s car seat to balance on the back… but we did it! It felt like the first day of school.

Something new.

People smiled as we wheeled to the childcare area of the church. For the first time, we walked past the “baby room” towards the 2 year-old class. I was so nervous when I dropped her off. I was worried that the other 2 year-olds would look at her weird because of her wheelchair. After the MOPS meeting, I went to pick up Hattie. She had a toy in her lap and was surrounded by her peers. Turns out having a hot pink wheelchair when you’re two and a half is pretty darn cool. Hattie had the BIGGEST smile on her face and she smiled the whole way home. I feel like if she could talk she’d say,

“That was so fun, Mom. I made so many friends… and I didn’t have to lay on the floor and look at baby toys the whole time.”

 As hard as it was for me to accept the fact that my daughter is in a wheelchair, after seeing her face light up around her peers it made it all worth it.

Love What Matters & Café Mom

 If you missed it, ‘Love What Matters’ reached out to us! We got the cool opportunity to write an article for their page, and share Hattie’s story with even more of the world. After that, ‘Café Mom’ reached out as well! It was pretty fun to connect with more mamas out there. I even came across another 1q4 mom that had never found another family with the same deletion until they saw our article. Here are the articles, if you missed them.

https://www.lovewhatmatters.com/is-she-breathing-right-now-she-was-limp-almost-lifeless-i-watched-in-fear-as-they-loaded-my-tiny-1-month-old-baby-girl-into-the-ambulance-baby-is-born-with-rare-chromosomal-deletion/

 https://thestir.cafemom.com/parenting_news/223663/baby-born-with-rare-chromosomal-deletion

Feeding Therapy

 After months of being on the waiting list, we finally got into Children’s for feeding therapy! We spent every Monday for a few months going to the Children’s Therapy Center for feeding therapy. We worked on trying to drink from straws, eating crumbs, eating chunkier foods, and lots more. Overall, I think I realized that feeding is a marathon. It’s not something that’s going to happen overnight. I learned A LOT of tips and tricks from our therapist, but Hattie still has some ways to go before she’s eating more solid foods.

Freaking Seizures

 Hattie was doing SO great with her seizures. She hadn’t had one since Easter 2019! … until last month. Hattie happened to be sleeping with us in our bed when I woke up at 3am to a small shake. I turned on the lights and saw that Hattie was having a seizure. Thankfully she came out of it on her own after a few minutes.

Fast forward to this past Sunday night around 8pm. We had just put the girls down for bed, and we were finishing up dinner when I glanced over at the baby monitor. I noticed Hattie’s eyes were open, and she appeared to just be staring off into space. She didn’t look right. I went into her room and, sure enough, she was having a seizure. Just to remind you, Hattie’s seizures don’t look like typical seizures. She turns pale, almost dusky blue, and limp. If I’m being honest, she almost looks dead… except for her very shallow breathing. This seizure wasn’t sitting right with us and had lasted over seven minutes at that point, so we decided to call 911.

5 more minutes passed, and we gave her the emergency meds. A few minutes later an ambulance, firetruck, and 2 police cars arrived in our cul de sac. It looked like a scene from E.T. with all of the paramedics in their hazmat suits (because of COVID-19) I ran down the driveway with Hattie’s lifeless body in her unicorn PJ’s. Even the paramedics had to ask if this “was normal” for her to look like she did – again, it just looks very scary.

After around 20 minutes, she stopped seizing. By this point, she was already loaded up and we were on our way to Children’s. Sitting in the back of the ambulance I immediately had flashbacks. The paramedics asking 1,000 questions and my pumping adrenaline making it difficult to speak. Our sweet neighbors rushed to our rescue and stayed with Shiloh as David jumped in his car and followed us to Children’s. If you don’t have good relationships with your neighbors, I suggest you DO…because you never know when you’re going to need them! We are so thankful to have the BEST neighbors.

We got to Children’s and rolled past the big scary room with the clear glass doors. If you’ve ever had a serious emergency with your kiddo, you know what room I’m talking about! More flashbacks as we passed that room. Flashbacks of David and I crying in the hallway as they intubated our tiny 1 month old almost three years ago and the 10 nurses and doctors racing around that room with the big glass doors. Luckily, we didn’t have to go in there this time.

Hattie seemed fine. She was tired, as she gets after she has a seizure, but she was excited to be up past bedtime and out of the house for the first time in a month. They wouldn’t let David come inside because of COVID-19 rules, so Hattie and I just cuddled in the ER. I hadn’t cried yet, until a sweet nurse peeked her head in and said “Do you guys go to Red Rocks Church? I saw your husband’s sweatshirt…” My eyes filled with tears, and I couldn’t control them. I felt like an angel just walked into the room. Or the same feeling when you see your mom after not seeing her in forever. Cindy was her name. She said that she had already said a prayer for Hattie and that she was going to continue to pray for her that night. Crazy how in the midst of the most fearful times of our lives, God always sends us angels when we need them most.

 We ended up discharging from the hospital that night as Hattie wasn’t showing any symptoms of sickness. I was relieved, but also worried. No sickness, but a seizure? This was new to us.

Hattie has been having very frequent Myoclonic seizures throughout the day for the past few months. These types of seizures aren’t harmful, but they are still a little scary. They last a couple seconds and are just a small jerk where she’ll all of a sudden lose all muscle control. The only way they could harm her is if she were sitting or walking and they could cause her to fall. We had an EEG done a couple of months ago which confirmed that she was having Myoclonic seizures throughout the day. It’s a new seizure journey for her, but we are continuing to learn how to control and (hopefully) eventually stop them.

 We had a telehealth appointment with our Neurologist who we LOVE, and we decided to add another medication to try and control the seizures. Even though this isn’t really what we wanted, we know it’s what best. The process will continue in finding ways to mitigate the seizures… upping her Keppra dose, adding on another medication and possibly bringing CBD into the mix in the future will be our game plan for now. One day at a time!

Pre School & First IEP Meeting

First of all, I can’t believe that Hattie is about to be THREE next month and that she will attend pre-school in the Fall! HOW IN THE WORLD IS SHE ALREADY GOING TO SCHOOL!? Time seriously needs to slow down.

There was a lot of  anxiety built up before Hattie’s first IEP meeting. (IEP stands for Individualized Education Plan). The scariest thing about it was the unknown. Not knowing how the meeting was going to go, who was going to be there, if the people there would be nice… all the things. Fortunately, the meeting went really well. Everyone was very nice, and it wasn’t too scary. The hardest thing about the meeting was just the harsh reminder of how behind Hattie actually is. I just had to put on my game face and get through the meeting without crying - that was my main goal!

After the evaluation and the 2.5 hour IEP meeting, we finally expressed all of our concerns, wishes, Hattie’s needs, goals etc. They came to the decision that Hattie will be attending Fletcher Miller Pre-School in the fall! We couldn’t be more excited. We had secretly hoped and prayed for Hattie to be placed at this school. Fletcher Miller is definitely a “unicorn” of a school. It is the only one of its kind in Colorado. It is a dedicated special needs school, with an integrated pre-school program (meaning typical kiddos and special needs kiddos combined in one class.) I feel super good about the decision of Hattie attending Fletcher Miller. Unlike most schools, Miller has full time PT/OT/Speech and nurses and more staff than students. I feel like Hattie’s needs will be met there and that she will be loved and safe. I already had a Zoom meeting with the pre-school director and her teacher. I loved them both, and I just know that they’re going to fall fast for our little Hattie. Go Mustangs!

COVID-19 Quarantine

Well, as the rest of you…we are home, and have been home for over a month. Honestly, we are over it. BUT, we are following all the rules and staying home and social distancing. Hattie has been receiving her therapies via telehealth, which has been challenging. We are just soaking in lots of family time, and trying to love on these babies as much as possible! Thanking God everyday that we are healthy!

I promise it will be sooner than 6 months by the time we write another post ;). Love you, fam!

-Abby & David

Big Sister!

Hey everyone! It has been a while! We have been a LITTLE busy over here… Busy welcoming our sweet new addition to the family, Shiloh Grace Heasley! I’ve also gone to write this blog several times, but I either have MAJOR mom brain and literally can’t think of words…or I get interrupted by a baby crying. Both girls are content right now, so I’m going to try and whip this one out real quick! Ha! I want to try and update y’all on 3 things in this post. 1. Shiloh 2. Hattie’s Wheelchair 3. Minivan… yes…I said Minivan

SHILOH

We are so in love with our sweet new baby girl! I was induced on September 4th, and Shiloh was born September 5th at 3:53pm. Pretty long labor, but not near as long as labor was with Hattie! We had a few scares during delivery, but overall everything went pretty smoothly. Shiloh is healthy, sweet, alert, and already so strong...and strong willed!

Seeing Hattie with her baby sister for the first time melted my heart. A lot of people are asking us if Hattie knows that Shiloh is her little sister. The answer is... we aren’t sure. I think she definitely knows that Shiloh is here to stay though! Hattie loves looking at Shiloh while they’re on the floor together, and for some reason she thinks it’s hilarious when Shiloh cries. I’m not going to lie, going from 1 to 2 is not easy. We are working off of minimal sleep, and lots and lots of coffee over here! But we are loving every minute of it. Watching our 2 girls together, is seriously the most amazing thing in the world. Not only do I think Shiloh is going to help Hattie SO much with her development, I also think Hattie will teach Shiloh a lot as well. Hattie & Shiloh… the sweetest little duo. I can’t wait to see them grow up together!

HATTIE’S WHEELCHAIR

This was a hard pill for me to swallow. It came time to discuss Hattie going to pre school next fall. Since she isn’t walking…in order to send her to school she needs to be in some sort of stroller or wheelchair. Between David and I, and Hattie’s therapists, we decided that a wheelchair was going to give Hattie the support she needs while she’s at school. We are by no means limiting her to this wheelchair. I DO BELIEVE that she will walk some day. It might be next year; it might be another 5-10 years. But I do believe that she will walk. But until then, she will be rolling around in her Barbie Jeep inspired pink and white tiny cute little wheelchair. After some tears…okay lots of tears… and accepting the fact that I will have a daughter in a wheelchair, I began to think of the positives. Hattie can now go into the “2 year old class” at our church nursery. Right now, we send Hattie with the babies so she doesn’t get trampled by the other crazy toddlers. But, after we get her wheelchair, she will be able to go in with her peers and be on the same level as them! I know Hattie will think that’s super cool. I’m hoping that Hattie’s wheelchair will help other kids feel more comfortable approaching her, and make her look like more of a toddler instead of a baby in a stroller. (We get A LOT of “aww look at that little baby!” comments when Hattie is in her stroller.) She is NOT A BABY.. she’s 2 and a half.  Okay, she’s still MY baby… but I’m the only one that’s allowed to call her that. Hah! Hattie’s wheelchair was custom made just for her, so with that, it takes a lot of time to get approved/made/shipped etc. We are hoping to get it in the next couple of months or so!

MINIVAN

That brings me into my next update…the Minivan...yes. Minivan. After having the conversation about Hattie’s wheelchair I began to realize that my small Audi Q5 probably wouldn’t be able to fit a wheelchair in the back. That’s when David and I began discussing a new car. We originally thought maybe just a larger SUV would work, but after lots of research and conversations with my other special needs mamas… I realized that a large SUV is also not very practical for a kiddo with a wheelchair. Why? They are high off the ground. I would have to lift this 40 pound wheelchair up high off the ground, and into the trunk of my car every day. We also took into consideration that Hattie won’t be a tiny 2-year-old forever, and we would have to lift HER into our car as well! Then the minivan got brought up. If you know David and I, you know that we have said that we will never be the minivan family. Well, never say never folks. After asking around on my different special needs groups about what kind of vehicles every one drove… it was an overall group consensus of MINIVAN. That’s when I began to jump on the minivan train. David was like “WHAT!?” no way are we ever buying a minivan. But as we continued to research, and test drive, he too jumped on the minivan train. Soooo… the Heasleys are now a minivan family. And y’all, I have to say… I AM OBSESSED WITH MY MINIVAN! It’s all black… David likes to say “it’s all murdered out”… So it looks a little cooler than your average minivan, I think? Her name is Pepper Van, and she is just perfect for our family.

Thank you for reading! We are so excited to continue this journey as a family of 4 :). Love y’all!

-Abby & David

Becoming a Dad: Part 2

Well, it’s been a while since a Dad post on here so let’s catch up. A lot has happened since “Becoming a Dad: Part 1”. I’d say I’ve changed the better part of 1,000 dirty diapers, given many baths, brushed many teeth, fed many bottles, successfully given Hattie (maybe 10?) successful pigtails and have enjoyed endless amounts of giggles from my little girl. We also found out that we are having another daughter in September which I have been mentally, physically, emotionally, spiritually and financially preparing for. Since my last dedicated “Dad Post”, a lot has happened - most of which we (mostly Abby) have enjoyed sharing in this blog with our family and friends. We officially have a toddler on our hands. She may still feel like a baby most times, but when that toddler attitude, personality and spirit comes out, it’s very clear that Hattie is becoming a big girl!

These kids are geniuses

We didn’t really know the extent of Hattie’s disabilities when I wrote my last post and to be honest, we still don’t know a ton. We don’t know when she’ll be able to walk or when her strength will improve. Her overall tone is still quite low and she has a long road ahead of her. What we have learned is how to take everything day by day. We’ve really learned to not think or dwell on the possibilities of the future and it has allowed us to soak up every moment with our little girl. There was a period of time there - probably all of 2017 to be honest - where Abby and I had no idea what to do, think, say, etc. about Hattie. There was a lot of fear, a lot of “I have no idea what to do’s”, and a lot of tears. Once we got into the swing of things, we have felt so ‘at rest’ about everything. Abby and I have really had to learn to be a team and everything that comes with having a child with special needs has brought us closer - the doctor’s appointments, the therapy, the medicine, the seizures, the hospital stays, etc. We like to say we finally feel like we are ‘coasting along’ and all the scary and stressful things have become the new norm.

Abby likes to give me a hard time because I have no idea what typical kids are supposed to be doing at certain ages. We were out to eat recently and saw this little blonde girl running around, pointing at things, and playing. If you would have asked me, I would have said the girl was probably 2 or 3. She was 15 months old. Anytime I find out some 2 year-old can say “ball” or an 11 month-old is walking around I am convinced those children are the most gifted children in the world. HOW ON EARTH ARE THEY WALKING AT 11 MONTHS?! Well, come to find out, that is completely normal. Most typical kids are walking sometime between 9 and 15 months. I’d say that’s been the hardest part so far - getting the true perspective of how behind Hattie really is. We have to stop ourselves when we begin to ask the question that I think every special needs parent asks at some point… “Am I doing enough? Can we be doing more for Hattie?”

Last month was Easter and our neighborhood had a massive Easter egg hunt for all the kids. They segmented the egg hunt into separate stations: an egg hunt for 1 - 3 year olds, an egg hunt for 4 - 6 year olds, and so on. It was crowded, and the egg hunt for the 1 - 3 year olds was about to begin. I held Hattie in my arms and it was game time. We were going to get some eggs. I looked around to see all these 1 - 3 year olds just bloodthirsty for some eggs.

“How old are these kids?! This is insane!” I thought as I saw what was probably a two year-old velcro his shoes tighter and point to the sandpit full of eggs and like the spawn of Albert Einstein, declare, “EGG!”

“That’s right, honey, egg!” his mom confirmed.

The alarm sounded and a horde of toddlers attacked the sandpit full of eggs. I had the choice of either waiting patiently for kids to scatter a bit so I could grab an egg or two, OR, I could start throwing kids and/or stealing eggs from them. Since their parents were watching carefully, from the sidelines, I chose to wait it out. Surely there would be a stray egg or two for Hattie. After what seemed like 10 seconds, the dust settled and Hattie and I stood there, empty basket in hand, looking at an eggless sandpit. All the eggs were gone, and Hattie hadn’t gotten a single one. I won’t lie… it was sad. My dad heart was ripped apart. Is this what egg hunts will be like? Will Hattie never get to enjoy the feeling of hunting for eggs - the thrill of finding an easter egg and opening it up to find some candy or a dollar bill? These genius two year-olds were running around with baskets full of eggs. HOW ARE THEY SMART ENOUGH TO KNOW TO PICK UP AN EGG AND PUT IT IN A BASKET?!

Now of course, Hattie couldn’t care less about not getting any Easter eggs. She had a great time as there was music blaring and tons of balloons - two of her favorite things. But as a parent, seeing these kids get all these eggs and then my daughter not getting any… it sucked. In the end, the joke was on the other kids though because this easter egg hunt just happened to be sponsored by a local dentist and the eggs were filled with NOT candy, but pencil erasers and floss.

Girls

In about 4 months, I will be a father to two daughters. There will be three human girls in my home. Estrogen levels in the Heasley household will have risen by 33% and I will officially be gravely outnumbered 3-1. In (12?) years or so, there very well could be three females on their periods under our roof… looks like I will have to strategically plan business trips three times a month. My fatherly future will be full of dresses, Disney Princess bedding, training bras, and ballet recitals. There will come a day where I might suggest lacrosse, soccer, basketball, maybe golf - but I am already preparing myself for the response of, “No Daddy, I want to tap dance” or “No Daddy, I hate sports” or “No Daddy, I only want to draw rainbow-colored ponies all day” 

… and I pray my “daughter dad” heart and mind will be ready to accept it. 

It’s fun to joke about how outnumbered I will be or that my house will be filled to the brim with bows and tampons, but the fact is, I am so pumped about having another little girl. When Hattie was born, I knew I would love being an all-girl dad if that’s what God has in mind. I’m so thankful that Hattie will have a little sister, and it very well may become a situation where the little sister is more of a “big sister” to Hattie. I’m thankful that my two daughters will have an amazing woman to learn from in Abby. I can only hope they will both turn out like their mother. These days it can be terrifying to bring a little girl into the world… Instagram, Tinder, The Bachelor, K-Pop boy bands, Rodan+Fields… it’s a scary time to have daughters. I look forward to learning as I go (as I do with most things in life) and learning from the many men of daughters who have gone before me. So if you have all daughters, don’t be surprised if I reach out with a “HOW DO I DO THIS?!” every once in a while.

EXCEEDING EXPECTATIONS

We have been overwhelmingly surprised and encouraged in the ways God has brought people into our lives these past two years. We have connected with parents from all over the world - Australia, New Zealand, England, Mexico, Ireland, Sweden, all over the U.S. and everywhere in between - who have kids with a certain 1q4 chromosomal deletion. We have seen families thrive and progress and we’ve seen families struggle and get back up again. Every little victory is a huge deal and it’s been fun to celebrate with our 1q4 family.

Every day I have seen Hattie exceed expectations. There are many, many people in her life that have helped her thrive over the past couple years - her physical therapist, Beth, her Occupational Therapist, Joy, her Speech Therapist, Lisa, her Swim Therapist, Amy, everyone at The Anchor Center who have helped Hattie with her CVI, her pediatrician, Dr. Kallio, and (mostly in my opinion), her mommy, Abby. The other day, Hattie sat in a restaurant high chair an entire dinner, something she had never done. We were so excited - it is truly the little things that are the best.

We recently found out we will need to start the process of getting Hattie fitted for a wheelchair. Another little road bump I can’t wait to see Hattie conquer. When we put those tiny little leg braces on Hattie’s legs and put her in her stander to help her learn to put pressure on her feet, I like to picture Hattie eventually running around our house and playing. Abby and I both know Hattie will continue to exceed expectations, and I can’t wait for her to surprise all of us.

- David

TWO!

I woke up the morning of Hattie’s 2nd birthday, and had a pregnant lady meltdown. I could not contain my tears! We have been through SO MUCH with Hattie over the past 2 years, and she has grown up to be this little toddler right before our eyes. Saying that I’m proud of her is a huge understatement.

Our road these past two years has looked very different compared to your average family’s. Instead of going to mommy and me classes, play dates at the park, or letting Hattie run and play outside… we have been working our booty off during therapy - vision 2 times a week, physical therapy, occupational therapy and speech therapy -  dealing with seizures and sickness, and attending doctor’s appointments with over 13 different specialists. It has been hard juggling all of the medical things while still trying to be her Mommy and let her be a normal toddler. I’ve learned over the past 2 years that I am not just Hattie’s mommy, but also her caretaker, her advocate, her therapy partner, and even her own personal secretary to fill out the mounds of paperwork that come along with being a special needs parent. All in all, I couldn’t be happier with where we are at with Hattie. I get to watch her grow slowly, and enjoy every tiny accomplishment.

I’m so thankful for all of the people we’ve met throughout our journey so far, and I know there will be many more special relationships to come.

At Hattie’s birthday party we fed her some chocolate ice cream. I was expecting her to turn away and freak out like she usually does when we feed her solids. But no… this girl LOVED her some chocolate ice cream. She was opening her mouth for more and even touching the bowl of ice cream showing us that she wanted more!! David and I were jumping for joy and so excited that she was showing interest in food other than her bottle.

Hattie has also started giving people “high fives”. I practiced with her one day, and she finally caught on and I about peed my pants. David was mowing the lawn, and I ran outside and flagged him down to come inside. We sat on our living room floor repeating “high five” “high five”, and even FaceTimed both of our parents. THAT’S HOW PUMPED WE GET FOR THE LITTLE THINGS IN THE HEASLEY HOUSEHOLD! It’s so awesome watching that little lightbulb go off in Hattie’s head when she finally understands something. One of our biggest goals for Hattie with her therapists was for her to be able to start making decisions on what she wants. We want her to choose between two toys, or a toy and her bottle, etc. We are only five months into the year and she is already beginning to make those decisions! We will hold her bottle and her iPad up (her favorite) and if she’s hungry, she will slowly but surely reach for the bottle (same goes if she really wants to play with her iPad). It has been truly incredible.

There are days where we will see another two year-old (maybe they’re even only 15 months) and they’re running around, chatting away, playing with toys, making a mess, etc. and it is briefly discouraging. But when we see how far Hattie has come and the potential she has to grow even more, we can’t help but get excited. We can’t wait to see what Hattie accomplishes in just another two years and just from what we’ve seen these past few months, we know she is going to blow us away.

So here’s to two more years of growth, becoming a big sister, and surprising all of us one little reach at a time!

-Abby and David

Standing Tall

Hattie has had an awesome few months! We received her stander, activity chair, and her switch from NuMotion! It’s amazing what this adaptive equipment has already done for her development. 

Before we got this activity chair, Hattie wasn’t able to sit up and play with her toys. Her Bumbo seat was not supportive enough, so she would sit in it for a few minutes then slump over. We would try and sit her up on our bed, surrounding her by pillows, but she would eventually face place into the pillows or arch back. So… anytime I had to get anything done around the house, Hattie was usually left on her back, on the floor, under her play mat. Now that we have this Special Activity Chair (brand is Special Tomato) she can literally play in it for hours! It has wheels, so I can wheel her around the house wherever I am. It is awesome! This thing is $4,000...Can you believe that?! Thank goodness for Medicaid, because they completely covered the cost for us!

The next thing we got was her Stander (brand is called Squiggles). This is helping Hattie learn to put weight into her legs. She has almost all of her weight on her feet while she’s in her stander, she is just very well supported. We will start by standing in this for 10 minutes a day, then work our way up to 1 hour a day. It is pretty cool seeing her stand up for the first time! While she’s in her stander, she has to wear her SMAFOS (her princess shoes) with a pair of tennis shoes over them.

 The last thing we got from NuMotion is her “Big Mack Switch”. This is a giant red button that attaches to a “switch adapted toy”. To activate the toy, Hattie just has to hit the red button, and it will work. Typical kids can usually figure out how to press a toy’s button, squeeze a singing teddy bear’s hand etc… this Switch helps Hattie understand that if she hits the red button, something happens with her toy. We only have 1 switch adapted toy right now that we received from a wonderful organization called “Santa’s Little Hackers”. It is an octopus that sings and lights up. Hopefully we can get some more toys in the future. Unfortunately, they are really pricey and not usually covered by insurance or Medicaid.

Another little thing that we got for Hattie are these arm braces. We use these during therapy to keep her arms straight so she can learn to support herself while she sits up. Hattie LOVES to have her hands in her mouth, so the arm braces help keep her arms down. They’re definitely helping her!

We started Speech Therapy this month, and Hattie is currently working on making choices! We started by holding up a toy, and her iPad. We would say “Do you want your toy? Or your iPad? Touch which one you want!” and we would repeat “Touch which one..touuuuch… touch..”. Sometimes it takes her a few minutes, but eventually she would almost ALWAYS touch her iPad (it’s her favorite).  Her Speech Therapist, Lisa, introduced us to a cool new App called “Big Bang Pictures”. It is a very simple App that shows a single picture, and you have to touch anywhere on the screen to activate it. Once you touch the picture if moves and makes noise. Hattie quickly figured this game out, and it was AMAZING to watch! This was such a huge accomplishment for her because it was the first time that she really understood cause and effect!! She has now learned that when she touches something, she gets it or something happens. The other day we asked her if she wanted “Milk” (her bottle) or her iPad. After looking back and fourth for a few seconds, she reached out and touched her milk! She was hungry :)! IT IS AMAZING WATCHING HER LEARN!!!

 Love y’all!! Thank you for following Hattie’s journey :)

-Abby & David

Been a While!

Hi Everyone! I just sat here for about 30 minutes reading over our previous blogs, watching videos, and had a huge cry sesh. It’s hard to believe that we’ve experienced that much LIFE in less than 2 years!! And if you haven’t already heard, we are adding to our craziness by welcoming another BABY GIRL to the Heasley fam this September. Even though Hattie doesn’t really realize what’s going on yet, I can tell she’s going to be the most amazing big sister.

            Hattie had a Neurologist appointment a few months back, and Dr. Walleigh told me that a sibling would be really great for Hattie’s development. Hattie loves to watch other babies, and even thinks the little noises that they make are funny. David and I both know that our second baby will probably pass Hattie in development, but we are prepared and okay with that. We are so excited for this little babe to come in September, and even more excited to watch Hattie with her new little sister.

            A lot of people have asked if we are doing genetic testing with this baby, and the answer is yes. ALSO- David and I did get tested to see if we were carriers of the gene of Hattie’s deletion, and neither of us are. The chances of any of our other children having a 1q4 deletion would be 1 in a billion, just like it was with Hattie. Even though we are doing extra genetic testing with this second pregnancy, I just want to be clear with something. No matter what the outcome is of the testing, it will not change our plans. It will just help us better prepare, so we are not blind sided like we were with Hattie.  But, like I’ve said in the past, we won the lottery with Hattie... so the chances of something like that happening again are slim to none.

            Thank you to everyone who has reached out, over the past couple of weeks! We feel the love! We would appreciate prayers, as always, for a continued healthy pregnancy!

So…What’s new with Hattie?

Well… on Christmas day, we had a CHRISTMAS MIRACLE happen! Hattie started to sit up! When I say sit… I mean she supported herself sitting for maybe 1-2 minutes, with one of us sitting closely behind her to make sure she doesn’t fall. We still have a long way to go with this, but this is definitely a great start!

Hattie is really starting to play with her toys, and have opinions on which ones she prefers. In therapy, we are working on making choices. So, I’ll show Hattie either a book or a rattle and ask her which one she wants to play with. Whichever toy she looks at the longest, is the one that I’ll give to her. The ultimate goal with this is for her to eventually reach and grab the toy that she prefers. So far… Hattie REALLY loves her iPad, and an orange cup that we play with in her sensory bin.

Our NuMotion Rep is coming on Tuesday to bring a stander for her to try out. Hattie got her little princess shoes (SMAFOS) so she can work on standing in her stander soon. Hopefully our actual stander will get here soon so we can start working on this! For those of you that don’t know what I stander is…. Here’s a picture for reference!

Thanks again for all of the love and support!!!

-Abby & David

ONE & A HALF!

Hattie is 1 and a half!!! She is seriously growing so fast, and becoming more and more of a toddler every single day. Currently she is super into grabbing her feet, her crinkle toys, Violet the purple dog, and Little Baby Bum. Her hair is finally long enough for me to play with. I am loving every minute of getting to do her hair however I want... because we all know that stage doesn’t last forever! We even moved up to a TODDLER car seat, and a new umbrella stroller!

Hattie has been exploring the world in a whole new way with her little pink glasses. We have been going to the Anchor Center once or twice a week for CVI therapy, and it has already become one of our favorite places to be. The staff at the Anchor Center is truly incredible. Every time we walk in we are greeted by the friendliest faces, and they all take the time to come over and say hello to Hattie and make sure she feels special. I have also found the Anchor Center to be super helpful for me as well. I have already met so many other moms, with young children similar to Hattie, and it has just been a great community to be a part of. The Anchor Center is such a magical place!!!

We have a big appointment coming up with “NuMotion”- a wheelchair and mobility equipment company- to get Hattie sized for a stander, a new Special Tomato Chair, and hopefully a switch for some adaptive toys. Scheduling this appointment was hard for me, just because it makes this whole “disability” thing a lot more real. We are going to have some BIG medical equipment in our house, and it will be a little weird to look at at first. But, I know this is what’s best for Hattie, and it is only going to help her continue to develop and grow.

A lot of you have been asking how Hattie is doing developmentally, so I thought I’d give y’all a little update on her inchstones, and goals we are working on.

First of all, Hattie has been doing GREAT! She is healthy, and is continuing to work super hard during her therapy. She has been working on some of the same goals for a very long time, but I know that it just takes time. I explain it to people like… take 1 year of a “typical” baby’s development… usually they push up from tummy time, roll over, sit up, clap, pull up, grab toys, bang 2 toys together, walk all in around 1 year. Take all of those milestones and stretch them out to about 5 or 6 years, and that’s where we are. Hattie is still learning to consistently roll over, still working on pushing up onto her hands from tummy time and grab toys during tummy time, and she is still working on sitting up. Sometimes it’s hard to notice a difference in her development even over a week or two, but she is definitely making progress.

We have grown an amazing tribe of Hattie warriors on our side, and it makes things so much easier for us! Her Physical Therapist, Occupational Therapist, vision teachers, Dr.’s and our friends and family are all so encouraging and supportive of Hattie. It’s like Hattie is on this lifelong race, and we are all her biggest cheerleaders and fans trying to help her reach the finish line. Even though our race hardly seems like a race at all, and I know there will continue to be lots of hurdles along the way… it is still awesome to see Hattie work so hard for the smallest things that come easy to most other children. HATTIE is the real warrior!!

-Abby & David

October Medical Update 2018

Hi friends & family! We have had quite the month! Mostly good things…just a lot of appointments! We did an October medical update last year, so we thought we would just do another one for this year. Over the past month we have met with Hattie’s Pediatrician, GI, Endocrine, had a Feeding Consultation, got blood work done TWICE, met with an Ophthalmologist, and started with our new Occupational Therapist. Whoa. So here we go!!

 15-month appointment with Hattie’s Pediatrician:

We were actually really excited for this appointment, because it was Hattie’s first appointment in a few months! Everything had been going really well, and we were pumped to have a “regular” doctor’s appointment. We were convinced that Hattie had gained a bunch of weight, but when they put her on the scale she still hadn’t even hit 16 pounds. She dropped down in her percentiles, and wasn’t on the chart anymore L. Dr. Kallio wasn’t too concerned, but thought it would be a good idea to get GI involved again to see if there was anything else that we could do to help her grow a little quicker. Hattie had to get 2 shots at this appointment, and didn’t even cry! Big girl!

We love Dr. Kallio!!!

GI (Gastrointestinal):

It had been a while since we’d met with GI, so they couldn’t believe how big Hattie has gotten! When they looked at Hattie’s weight for length, they weren’t too concerned because she was in the 15th percentile for BMI. (I’m so over the “charts… Hattie is just on her own little chart, and she always has been). They brought a dietician in, and she recommended that we start a new formula called Nutren Junior. Nutren Junior is TWICE as many calories as her old formula, and we would only need to give her 3 bottles a day—hallelujah!!! This was such an amazing change for us - not to mention it tastes like a vanilla protein shake, so Hattie LOVES it. Since she has been on her new formula, she has already gained weight!  

 Endocrine:

We followed up with Endocrine to make sure all of Hattie growth hormones were in check. This is one specialist that I still have a hard time understanding, just because all of that stuff confuses me. All I know is that our endocrine appointments are never fun, because they always follow with blood work. For the specific tests they needed, Hattie’s tummy needed to be completely empty.. which meant us getting to the lab at 7am. We went for the blood work bright and early, and they couldn’t get a good stick so they had to prick her finger and squeeze out blood for 10 minutes. It was awful. Since they didn’t get enough blood for all of the tests, we had to come back later that day after she was hydrated a little.  All of her lab work came back normal so hopefully it will be a while before we have to do that again!

Poor baby. We went and got a new babydoll afterwards to make us feel better.

Feeding Consultation:

Hattie’s therapists had recommended that we get a feeding study done to see if Hattie will qualify for feeding therapy. When I called to make the appointment they were booked out until late January 2019. A couple of weeks ago I got a call from Children’s at 7:15am, and they had a cancelation at 9am that morning! So of course we dropped everything, hopped in the car, and made the drive to Aurora. I had no idea what to expect with this. When I got there, they brought us to a room that looked like one of the interrogation rooms on CSI with the one way mirrors. I sat Hattie in a Special Tomato seat, like the one we have at home, and I fed her. On the other side of the mirror watching was a Dietician, Occupational Therapist, Speech Therapist, a Dentist and a Geneticist. I was kinda nervous—ha ha! I don’t know why? But I guess a bunch of people watching our every move, just made me a little uncomfortable. I fed her some peanut butter (PB2 powder), puréed veggies, and gave her a bottle. After she was done eating, each Doctor came in to talk with me one by one and tell me what they observed. In a nutshell, they thought that Hattie did very well. Of course she is not feeding herself chicken nuggets and mac n cheese like a typical 1 ½ year old, BUT for where she is developmentally, they were pleased with what they saw. Once Hattie really starts to sit up on her own, they will circle back and she will probably start some feeding therapy so she can eventually learn to hold her bottle and feed herself.

Ophthalmologist:

Hattie’s new Occupational Therapist, Joy, noticed that Hattie was not tracking with her eyes as well as she thought she should be. We have also noticed this, and had been wondering if we needed to get Hattie’s eyes checked out. Joy used to work at the Anchor Center for Blind Children, and recommended that we make an appointment. The Anchor Center is not just for blind children; it is for all visually impaired kiddos. First of all… The Anchor Center is AMAZING. The entire building is sensory friendly, very adaptive, and it is just an overall happy place to be. The Ophthalmologist did a full eye exam on Hattie, and here is what we know now.   

1.     Hattie was diagnosed with CVI (Cortical Visual Impairment… CVI is a decreased visual response due to a neurological problem affecting the visual part of the brain.) This was kind of a bummer to hear, but we were told that this will hopefully get better over time as Hattie continues to develop. We are also going to start a program at the Anchor Center that will help with Hattie’s CVI. We will start this in about a month, and will be going to therapy at the Anchor Center on Mondays and Wednesdays.

2.    Hattie also has Esotropia, which is where one of her eyes tends to cross in. This can sometimes be corrected with glasses, but her Doctor said it will most likely need to be corrected with surgery. Praying for no surgery, but we will find out more in the next couple of months

3.    She also has an Astigmatism in both eyes. This is of course very common, but we are just glad we found out sooner than later! Because of this, Hattie will be getting glasses. Who knew she could get any cuter, but oh yes she can... she’s going to be so cute in her little glasses.

Our new Occupational Therapist, Joy!!

Hopefully she’ll like them better once she realizes she can SEE!

Thanks for following along with us on this crazy journey!! We appreciate all of your love and support, more than you know!

-Abby & David

We moved!!!

We moved!!!

Just to a new house... sorry Texas friends & fam, I don’t think we are coming back to Texas anytime soon! We have absolutely loved our sweet little first house, but we have decided to move into a house with a better floor plan for our family. Our new house is about 20 minutes west (closer to the mountains and to David’s work territory). It is a ranch style house with the bedrooms on the main level, which will be ideal for Hattie! Hattie’s new bedroom has wide french doors, which will be so great as she learns to walk in the future. We couldn’t be more excited for this new chapter for our family! 

Bye bye old house!

My Uncle came all the way to Colorado to help us out! 

Our sweet friends helped us move & babysat Hattie all day!! ---Silverware was packed, so we improvised!

Warrior Beads

I am very excited to share about Hattie’s Warrior Beads! The “Warrior Bead Program” is something that I heard about from one of the Moms on our 1q4 Facebook page. After some research, it was a given that I had to apply for Hattie. Warrior Beads stand for all of the tough things that you have to go through as a child with disabilities. They are badges of honor. Every color of bead represents a different procedure, therapy, emergency etc. It is an illustration of everything that Hattie has endured over the first year of her life. I honestly hadn’t realized HOW MUCH she has gone through until I started filling out her Warrior Beads application. It is such a cool program, started by the most amazing young man named Chris Carswell- who has also been through a lot himself. We are going to continue to add to her Warrior Beads collection, and will apply each year for her birthday. Hattie had a total of 123 beads this year--She is SO STRONG!

Dr. Visits (Dark Blue)- 38

In patient Hospital Day (Yellow)- 19

PICU/NICU/ICU (Gold)- 3 …3 separate visits

ER Visit (Red)- 3

Ambulance or Care Flight (White)- 2

Needle sticks/blood draw, injections, IV starts (Black)- 35

Port/Central Line (Silver)- 2

IV Medicine/Infusion (Orange)- 3

X-Ray/CT/MRI/MEG (Olive)- 3

EKG/Doppler/Echo (Heart shaped bead)- 1

Respiratory Support (Pink)- 2

Catheter/Tubes (Green)- 5

Therapy (Khaki)- 2…1 for Physical Therapy & 1 for Occupational Therapy

EEG/VEEG/Sleep study (Clear Purple)- 2

Seizures (Purple)- 3

*Lion bead= Strength

*Smiley face bead

*Never give up bead

*Rare gem bead

Total Number of Beads: 123

http://www.1boy4change.org/warrior-beads-program.html

ONE!

HATTIE IS ONE!!!! What?!! I seriously can’t believe that we have had a whole year with little Hattie. This year has been filled with so much joy, many challenges, and more trust in the Lord than I have ever had to endure. 

Hattie Blake Heasley...born on May 24th at 10:39am...6 lbs 13 oz 19.25 inches

1 month...Spent some scary times in the NICU :(

2 months...Found out about 1q43q44 deletion syndrome, and realized that we had one special girl on our hands! 

3 months...Started smiling…a lot! Started sleeping through the night!! Saw A TON of specialists over the next few months, and started seeing our Physical Therapist, Beth!

4 months...Started laughing! Had some pretty epic blow outs…

5 months...Took our first trip to the mountains!

6 months...Started teething!! Got her first 2 bottom teeth!

7 months...First FULL month with ZERO doctor’s appointments!

8 months...Got the flu :( Started seeing our Occupational Therapist, Kelly!

9 months...Started lifting her head during tummy time—THIS WAS HUGE!

10 months...Started riding in her big girl stroller!

11 months...Started really developing her sassy personality!

1 year...Hattie rolled over for the first time the day after her Birthday! All of the grandparents were there to see! It was such an exciting moment! We didn't catch it on video, but this was right after it happened! 

We celebrated Hattie's 1st birthday with family and close friends here in Colorado. Hattie is very loved, to say the least :)

Love y'all!!!

-Abby & David

Hattie's Super Powers

Hello friends! Our little Hattie bear is almost ONE…and I’m kind of freaking out over here! We have been hitting some pretty major “inch stones” lately! Hattie started clapping! It is a very small clap, but she is definitely imitating us, and we couldn’t be more excited for that. She has also been improving with her head control, and overall control with her core muscles. She started slightly raising her head in February and now she can lift all the way up from her tummy and look around! I feel like she will be sitting before we know it.

Physical therapy and occupational therapy have continued to go well. We love our therapists Beth and Kelly! They are amazing with Hattie, and just amazing people in general. As Hattie gets older, we are navigating through options with insurance and home care to make sure she is able to get everything she needs. We still have so much to learn! Fortunately, the state of Colorado has some incredible resources for special needs families and for that, we are thankful.

I wanted to share something with y’all that I’ve recently fallen in love with. The Super Power Baby Project. We found out about this through one of our friends on our 1q4 Facebook support page. It is such an incredible point of view. Special needs are usually looked at as a ‘negative’ thing… a disability, failure to thrive, etc. This project takes everything about having special needs and turns it into something positive. I really think God puts these kids on Earth to bring joy and happiness to others and to put things in perspective for people. Go watch the video :) 

Also...a couple of Hattie's 1q4 friends are in the book! Adam & Kaiden. SO COOL! 

Here are Hattie’s SUPER POWERS:

She has a contagious laugh!

She has abs of steel. She ALWAYS has her feet up in the air!

She has shown us a new perspective of life, and taught us how to appreciate the little things.

She is a SUPER sleeper.

She is a really easy going baby!

She makes the best faces.

She knows how to melt her Mommy & Daddy’s hearts.

Love y'all!! Thanks for following Hattie's journey :)

-Abby & David

Rare Disease Day

Hello friends and family! I’m sorry we have been slacking on the blog lately. Things have been busy busy, but going so great at the Heasley house, which is why I feel like we haven’t posted in a while! It’s easy to write when things aren’t going well, but when they are going well we just keep on livin life!

Hattie has been growing like a weed! We have her 9-month appointment at the end of the month, but I’m guessing she is around 14 pounds now! She is getting stronger every day, and making huge improvements during physical therapy. She grabbed a toy the other day, and her therapist Beth and I looked at each other and squealed with excitement. I like to think that we are taking the longer more beautiful route of life with Hattie. We get to soak in every tiny thing she does, and celebrate every “inch-stone” that she hits. She also lifted her head up during tummy time! It was only for a couple of seconds, but it was such a huge step for her... SHE IS GETTING SO STRONG! Beth recommended that we begin Occupational Therapy once a week as well, so we just started that last week. So now Hattie sees Miss Beth for PT every Tuesday, and Miss Kelly for OT every Wednesday. PT has been focusing on gross motor skills and overall muscle tone through things like sitting up, lifting her head up, eventually walking, etc. With OT, Miss Kelly will hone in on the finer motor skills such as grabbing things, using her fingers, talking, and learning to feed herself. We are also looking to get her into Music Therapy soon, because Hattie girl loves her some music!

Rare disease day is in February 28th!! This day is near and dear to our hearts because there are only about 55 reported kiddos with Hattie’s chromosomal deletion of 1q43q44. “The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.”

If anyone would like to participate, and help us spread awareness, here are the details! David and I will be painting our faces, and posting a picture on social media. Don’t have face paint? Use lipstick or makeup! OR just post a picture with one of the hashtags!

https://www.rarediseaseday.org/

#RareDiseaseDay   #ShowYourRare   #MyRare   #1q43q44

And if you want… use the hashtag #HattieBlake so we can see all of your posts J.

Thank you so much for supporting us, and following Hattie’s journey! We love you all!

Abby & David