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Developmental Delays


Jaxson must be hitting a growth spurt or maybe it’s because he’s been around his older cousins while on vacation. He has been watching them and chasing after every single one of them at our BBQ.

He’s literally doing so much and developing such an awesome personality.

Recently I wrote about Jaxson drinking out of a straw and how he’s taking a couple steps before going face first into the ground. Last night he amazed us at 12:30 AM–yes, you read correctly AM. Jaxson is a party animal at night.

He started to push up on his feet and STAND for maybe a couple seconds. He did this so many times last night and would laugh, smile, and flail his arms back and forth with excitement. It was such the cutest thing. He was SO pleased with himself.

We also celebrated Airway Disorder Day 2018 yesterday–Did anyone else join us? I painted my nails light blue for my little warrior and he was rocking his Lu the Lamb onesie from Coping with LM.

He has a one track mind and is very determined but it’ll definitely benefit him in the future. He’s one tough cookie that’s for sure!

July 12, 2018

Our First Flight!

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Boy let me tell you how nervous I was prepping for this flight! I have flown before, many, many times before. I was an Air Force brat who PCS’d every few years, flown with my oldest a couple times… I’m seasoned when it comes to flying.

HOWEVER.. Flying with TWO children and ONE with Special Needs? That had my stomach in knots. I made sure I packed enough snacks of fishies, veggie straws, formula, and packed some toys and my son’s Kindle Fire tablet.

I was a sweaty mess when we got to the gate.. got onto the plane and the stewardess looked at me with disbelief and asked: “Do you have anyone to help you?” I shook my head no and kept on trucking to our row of seats at the back of the plane.

I didn’t have have time to stop and purchase water after going through TSA so I asked the stewardess for a bottle of water. She gave me a HUGE bottle and recommended that I had something for him to suck on during take off..

Made me even more nervous.

I had his bottle prepped and ready, JJ playing his Kindle Fire, and the plane started to move. Then the plane started going faster and faster.. then the ascend. And you know what Jaxson did? He LAUGHED.

Yes, you read correctly, he LAUGHED.

He even laughed during the DESCEND.

I don’t know if it was a fluke or what but I hope our flight back to Florida is a breeze too!

July 5, 2018

Connecting with another DYRK1A family

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Lunch at Rotolo’s Pizzeria

The thing about rare chromosome disorders is that because it is so rare it is hard to find someone who understands and relates to the challenges you went through. I’m not going to be able to make it to the DYRK1A Meet up in Charolette, NC but I was fortunate enough to meet an awesome family here in Florida. They were vacationing from Birmingham, AL and reached out to me and I’m extremely grateful because I wouldn’t have had the guts to do so myself.

I thought I would’ve been extremely shy and awkward but the get together was anything but. We connected right away and spent two hours chatting about our boys and our lives.

It was amazing to see another child in person with Jaxson’s condition–I didn’t think I would find someone so close by.

Their features are so similar, it’s crazy! Especially around the eyes and nose.

It allowed me to kind of see what our future holds–what to expect with Jaxson. Nothing is set in stone with DYRK1A, everything is so new.. but that’s the good thing about connecting. You can learn and ask many questions with families who have been through this longer than you.

It also affirmed that our DYRK1A children are different despite having the same gene mutation.

I really enjoyed their company, as did my boys JJ and Jaxson. JJ spent most of his time on his Kindle Fire but he still had fun discussing his Angry Birds and Sesame Street games with Trotter.

Trotter is so sweet and funny. I hope you got that banana bread you were asking for at the end of our lunch!

I can’t wait to meet other families with DYRK1A! Hope to meet some of them when we move up to NC in the fall or at the next DYRK1A meet up in 2019.

Thank you for reading!

July 2, 2018

Things Not to Say to a Special Needs Parent

Things NOT to Say to a Special Needs Parent….

DISCLAIMER: I am NOT writing this to offend anyone. I AM writing this to show awareness and to be mindful of what we say to Special Needs parents. I asked around a Facebook page today and asked what phrases or words people (friends, family, and strangers) have said that upset them… 

When we were at the Naval Hospital in the very beginning, Jaxson was about three months old and this older lady strikes up a conversation with me. I know she meant well but when she asked how old he was and I replied with: “Three months old,” she gave me this look. She thought he was ONE month old, not THREE months old. I know she didn’t KNOW that our baby wasn’t thriving but it made me feel upset nonetheless. At three months old he was barely a little over his birth weight of 6 lbs 10 oz.

When I tell new people about Jaxson’s Rare Chromosome disorder I get a lot of crickets or blank stares. It’s not intentional, I know that, it’s hard to comprehend–I’m even having a hard time learning about it myself. JUST SO MUCH INFORMATION! I love that I have been able to find a special tribe that understands this journey of ours along with the outpouring of love and support from our friends and families.

“He’ll get better or he will outgrow it..”
Unfortunately with certain Rare Genetic disorders is that they aren’t going to get better like someone would from an illness or outgrow it like a child outgrows training wheels. Our warriors just learn to LIVE and ADAPT to their disabilities. Jaxson surprises us every single day with his accomplishments!

“Your child doesn’t look sick or he doesn’t look autistic..”
I know it’s meant to be nice but in all honesty, it really isn’t. When someone tells you about their child and about their Special Needs or Rare Genetic Disorder, please don’t tell them they do not look sick, they look normal, or happy. A Special Needs child and a child with a Rare Genetic disorder do not fit a specific “mold” or “one size fits all” so to speak. Two children can have the same genetic disorder but exhibit different symptoms and features.

“How old is he? …Really he is?”
Like most of the children with Special Needs or Rare Genetic disorder, Jaxson is developmentally delayed and speech delayed. His physical therapist stated that he is at about 8/9 months delayed so that would put him at about a 8/9 month old child level based on that diagnosis. So yes, he acts and appears to be younger then he is but he is 16 months old. I know this is unintentional like the Naval Hospital incident but it still makes me and others upset when are children are compared to others their age.

“Have you tried changing their diet..?”
Yes. Yes we have. Jaxson has mild dysphagia which makes it difficult to swallow, he has come a long way with Feeding Therapy but it still lingers. Because of his Rare Genetic disorder, we aren’t sure if it’s going to be a temporary thing or if it’s going to be long-term. Children with G tubes, NG tubes, etc. They’re on there for many different reasons, and asking them if changing their diet or have you tried changing your child’s diet isn’t something they want to hear. Like most, they’ve exhausted every possible avenue prior to having their children undergo life saving surgery for a feeding tube.

“He/She doesn’t act like so and so’s child..”
I haven’t dealt with this personally but a couple of moms on the Facebook page have and nothing is more disheartening or upsetting to hear that your child is anything but “normal.” Please don’t compare Special Needs children to other children.

I know I am super POST HAPPY the last couple days. I just really enjoy writing for this blog.. it feels very therapeutic.. like I’m finally lifting all this stress off of my shoulders. I hope I will be able to help someone else who is struggling for answers.

Want to share your experiences with me? Please leave a comment or message me, I would love to hear from you.

July 1, 2018

Inchstones Not Milestones

What are Inchstones?

Like most families I celebrated all of the typical milestones with my oldest, JJ. He reached all of his milestones early.. he crawled by five months, he walked by eleven months, cut his first tooth by seven months, he upgraded to a sippy cup by nine months, and so on and so forth.

So what does inchstones mean? Let’s do some math shall we (not my strong suit so bear with me lol):

An inch is an inch.
And 36,650 inches make a mile.

An inch is smaller than a mile but with a special needs child you celebrate every. single. achievement. No matter how small.

No longer needing thickened feeds, consume a 5 oz bottle in less then five minutes (use to take him an hour to consume one whole ounce), and eat small finger/table foods and snacks.

Jaxson just recently started to take two to four steps unassisted AND standing for a couple seconds before plopping down. HUGE ACHIEVEMENTS. Just six months ago he started to army crawl, then he started to crawl on all fours and sit up four months ago, pull up to stand and cut his first tooth three months ago.. and now look at him, 16 months old and taking his first unsteady step.

Potato baby no more!

Pushing our vacuum around

June 29, 2018