Crossing Off Another Inchstone

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Jaxson hit another inchstone today while at our family's BBQ.

He USED a straw! 

AND he drank something other then ALMOND MILK!

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Our Feeding Therapist would be proud being that he REFUSED to use anything but his MAM baby bottles for drinking.

I've tried a MAM sippy cup, Playtex sippy cup, you name it!

Now I'm going to look into purchasing sippy cups with a straw, any advice? Any favorites? Please give this momma some ideas!

Flashback Friday

Flashback Friday!

In honor of Flashback Friday AND Airway Disorder Awareness Day (July 10th).

Jaxson at one month old (left) having trouble breathing, eating, and gaining.

Jaxson at sixteen months old (right) eating anything and everything. Can drink 5 to 8 oz of milk in less than five minutes.. AND BREATHING EASY.

Please support Jaxson and his fellow Laryngomalacia Warriors with painting your nails light blue for Airway Disorder Awareness day on July 10th, 2018.

Show your support by tagging/sharing with us on Facebook or Instagram! Tag your photos with #AirwayDisorderDay2018 #LightBlueforLM

Thank you from Jaxson's Mom Jennie

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

Funday Friday

Today is Funday Friday! 

We do this for you Jaxson!

We dressed up as Batmom and Ninjago in honor of Jaxson today for Rare Chromo week. Whenever someone told us how much they loved our costume we mentioned it was for Rare Chromosome Awareness week! 

Movie date

I also went to go see Jurassic World with my oldest for a little bit of a mommy and JJ date. I like to make it a point in spending time with just JJ since I give a lot of attention to Jaxson with everything going on. We definitely had fun! Even bought some ice cream afterwards.

Batmom and Ninjago 

FLEX

Next year I will ensure that I have a flyer or brochure of some kind to hand out for Funday Friday!

How did you show support on Funday Friday?

Thankful Thursday

Thankful Thursday

Today I am thankful for....

Jaxson is no longer Failure to Thrive.

Jaxson can now stand unassisted for one to two seconds.

Jaxson can now take steps while holding my hands.

For our amazing friends and family.

For Jaxson's happy disposition despite everything.

How much my oldest loves Jaxson and wants to protect him.

Therapies that help Jaxson overcome this syndrome.. He surprises us everyday.

DYRK1A support page -- no longer feel alone in this journey.

For my strength and determination.

For my rock, my best friend, my husband James.

Warrior Wednesday

Today is Warrior Wednesday, and where do I even begin?

For Warrior Wednesday, they ask you to recognize someone who went above and beyond for your family. The only problem is that not just ONE helped us through this journey.

When I was at the Children's Hospital for a week, unable to leave Jaxson I had amazing friends who stopped by with coffee, snacks, watched Jaxson while I slept, kept me company, and JUST being there. You all are the real M.V.P. Thank you Jean R., Ashley P., and Naomi M. You all are truly amazing, thank you! Thank you for helping us with the boys and keeping an eye on them when we had to go to appointments, date night, or just needed a little break.

My dear friend Michelle R., you are truly a great friend. You came running to help when James and I were both down with whatever the heck that was--we couldn't eat or drink without throwing up--and couldn't even care for Jaxson who was sick as well. You also stopped by when we were in at the Children's Hospital to allow me to go down to get breakfast or coffee. Listened to me vent or cry when I needed it. YOU'VE DONE ANYTHING OR EVERYTHING! Thank you so much.

Lynne B., I'm so glad we met. You have no idea how thankful I am you were there when I got that phone call from our UAB team. I really appreciated you coming over a couple weeks ago to hang out and make some Okinawan Donuts lol. It wasn't much but it was fun! Thank you for everything, thank you listening, just thank you!

Our family The Carforas, going out of their way to help me go to University of Birmingham for Jaxson's Genetics or Aero Digestive appointments, taking us away for a weekend, listening and answering all of our questions--I love you all so much, thank you. Mom and Dad, thank you for raising me to be strong, I love you both so much.

My husband, you are truly a warrior too. You are an amazing husband and father and thank you for all of the sacrifices to support our family. I know it is difficult being away from your family but you do it to ensure that we have everything we need. I love you so much!!!!

Lastly, Jaxson's Pediatrician. Dr. Southwick went out of his way to ensure that we were seeing all of the right specialists, listened, and was and still is very thorough. I'm thankful to have you as my child's doctor and we will miss you when we PCS in the fall.

Thank you all from the bottom of our hearts.