Aero Digestive Clinic

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Look at that double chin

Sunday we left for Birmingham, Alabama to see an Aero Digestive Team at the Children's Hospital. The ride was AWESOME, Jaxson did not scream for hours and did not throw up all over himself. We always dread driving with him but since switching him to forward facing it's been a lot more bearable lol.

Our appointment was SUPER early, 0745, so we decided to leave the afternoon before and stay at a hotel.

JJ had his Kindle Fire 7 Kids tablet and portable DVD player and as long as Jaxson had snacks and his bottle we were golden.

Eating some crackers

Left the hotel at 0700 and stopped for the essential... Dunkin Donut coffee with a turbo shot. Coffee has been a staple since the day this little peanut was born, lol.

Parking is ridiculous at UAB, if you ever go to see a specialist--GET THERE EARLY! Allow enough time to park and PLAN TO WALK A LOT. I brought my carrier this time and carried Jaxson through the hospital as my father in law pulled a Radio Flyer wagon (they provide these) with my oldest in it.

Thank god for family! I don't know how I would do it without them!

When we checked into Clinic 6, they had us go up to Imaging to have an x-ray of his chest done prior to the appointment.

Afterwards they took our little peanut's vitals and I should say that he's no longer a peanut.. he's a chunk chunk. He's a whopping 22 lbs now! If you would've told me he would go past 10 lbs this time last year I wouldn't have believed you! He's still on the short side, 29 inches, but that is to be expected in children with DYRK1A syndrome.

We saw a team that consisted of a Pulmonologist, Gastroenterologist, and two Speech Therapists. We mentioned our concerns and that we wanted a second opinion on his sleep apnea and gastro problems. Jaxson has been sleeping terribly for months now and I have been worried it's related to his diagnosed sleep apnea. It's probably more behavioral but I wanted to rule out the apnea to ease this momma's mind. 

Sleeping

Found that with his current weight that his dose of Zantac is TOO low so we will be adjusting that dosage to help with reflux. Sleep study will be scheduled for when we move up to North Carolina and possibly done at Duke. The chest x-ray came back normal as well!

Swallow Study

They sent us down for a swallow study to rule out aspiration for his choking and gagging on solids and his almond milk. He hadn't had a swallow study done since he was a month old so thankfully they put in for this.

HE PASSED. 

The barium swallow study showed no penetration when he consumed thin liquids, puree, and crackers. GREAT NEWS! I'm so relieved. The Speech Therapist who did the test thinks the choking and gagging is more Sensory related so I'm hoping I can expedite his Occupational Therapy referral with this information. 

I might look into this more thoroughly to ensure that it's indeed Sensory related.

Now I just have to worry about our flight on July 3rd, Jaxson has NEVER flown. 

Send good vibes please!

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.

Our Survival Gear the First Year

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Our first year of baby products

I came across a blogger the other day and she had written about her daughter's essential gear and I thought what a great idea! I did mention briefly what worked for Jaxson but I figured I could list and discuss into detail what we used for Jaxson during his first year. I'll post pictures of the items as well!

List of Jaxson's Gear:

• Rock n' Play
• Medela Breast pump
• MAM Pacifiers
• Dr. Brown Special Needs Bottles
• MAM Bottles
• Nose Frida
• Crane Humidifier
• Moby Wrap
• Ergobaby Performance Carrier
• Swaddle Me 
• Oatmeal/Rice Cereal
• Saline Drops
• Boppy Pillow
• Up and Up Sensitive Formula

List of Medications:

• Zantac - 2 mLs twice a day for Reflux/GERD
• Miralax - 1 tsp a day for constipation

First and foremost the Rock n' Play! This was a LIFE SAFER! We used it for our first born and we figured 'hey, what the heck let's buy it for our second!' We didn't realize at the time that it would definitely benefit us and Jaxson to have that in our house. Jaxson spit up A LOT and had really bad Reflux/GERD so we had to keep him upright frequently.

Jaxson sleeping in his Rock n' Play!

Boppy Pillow: Like the Rock n' Play we used the boppy to sit him up at an angle after each feed. I did use the boppy pillow A LOT the first few months to help hold him while we fed him a bottle as well. 

Jaxson and his big brother, JJ!

Medela Breast Pump: I had a breast pump that I hardly used from my previous pregnancy but I also got the basic one through my health insurance. I had all intentions of breast feeding and using the pump for work (I worked full-time for a couple months) when Jaxson was at daycare.. but things didn't happen that way. I started to exclusively pump when he was a couple days old. There are moms out there who pumped and pumped well onto their little's first birthday but physically and emotionally I couldn't. After 8 weeks of leave I had to go back to work and I was just mentally and physically tired from lack of sleep, work, running Jaxson to frequent doctor appointments, etc. I ended up stocking up on A LOT of breast milk--I filled an entire chest freezer--and stopped pumping when he was 4 months old. We started mixing the breast milk with the Up and Up Sensitive Formula to help add calories for Jaxson as well.

Up and Up Sensitive Formula: Since Jaxson had Reflux/GERD we started using the Target brand Sensitive Formula to fortify his bottles. Jaxson was burning way too many calories trying to eat so it was important that we fortified his milk. Once we introduced the formula and extra calories he started to rack on the pounds! Other families were using Neocate or Nutrimagen formula too for food sensitivities and/or severe Reflux/GERD.

Rice/Oatmeal Cereal: When Jaxson was a month old we had to start thickening his bottles with rice cereal at first. We then switched to oatmeal cereal per Pediatrician recommendation. I know some families on the Coping with LM page are using thickeners like GelMix to thicken their little's bottles.

MAM Pacifiers: We've tried many pacifiers but Jaxson took to the MAM pacifier that we got for free from the Target Registry gift bag. He used this pacifier up until December 2017, he LOVED that thing! It definitely helped us late at night when he was fussy or fighting sleep.

Dr. Brown Bottles: Jaxson wasn't taking to the Medela bottles really well so we decided to try the Dr. Brown bottles when we were admitted at the Children's Hospital. BUT we had to order the special needs nipples since they didn't sell them at the store. He did take to these A LITTLE better then the Medela bottles/nipples but was still having trouble consuming 2 ounces of formula within an hour.

MAM Bottles: I don't remember who recommended we try the MAM bottles but I'M GLAD WE DID. We bought one bottle around April 2017 and he was able to consume 2-3 ounces very quickly. We were astonished! We didn't want to get our hopes up so we kept washing the same bottle multiple times a day but lo and behold! He was doing well with it so we bought 5-6 more! We still use the same bottles to this day, he refuses sippy cups.

Nose Frida/Saline Drops: Jaxson was sick and congested A LOT in the beginning and made his Laryngomalacia worse. Nose Frida and Saline Drops were our friends it helped him breathe better when he slept at night. MAKE SURE YOU BUY THE FILTERS!!!

Crane Humidifier: We used our humidifier a lot too when he was congested, it also helped him breathe better at night.

Moby Wrap/Ergobaby: THESE ARE SUCH A BIG HELP. Jaxson was and still is a fussy baby and ALWAYS has to be with momma. When I need to clean or cook and he is fussy I just throw him in one of these and he's golden. He still can't walk on his own too (developmentally delayed and abnormal gait) so it's nice to have a carrier when I'm out and about with the family. I ended up buying the Ergobaby because I can use this up until he's four-years-old OR 45 lbs which will benefit me in the long run. I bought it like new for $40 and I'm so glad that I did!

Swaddle Me: We used this a lot too in the beginning, he startled a lot in his sleep which kept him up a lot. When we swaddled him with this AND gave him the pacifier he would sleep between 5-7 hours! Man I miss when he slept that good haha. I'm lucky to get 2-3 without him waking up!

Well these are the items we used A LOT his first year and then some. To date we still use our Ergobaby carrier, MAM bottles, Nose Frida, Crane humidifier, and Boppy pillow (usually for lounging around or drinking his bottles). I hope this post helps you with your little ones!