How to Prepare for a Sleep Study

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Jaxson's first sleep study

Let's rewind for a second...

When Jaxson was born our Pediatrician was concerned about his recessed chin, or micrognathia. They were especially concerned when he was diagnosed with Laryngomalacia, an airway disorder, and his micrognathia. Why you ask? Well Laryngomalacia occurs when the larynx is softened and flops back and forth when the child breathes. Since he had the softening of his larynx and micrognathia it was a concern for severe obstructive sleep apnea events.

What is obstructive sleep apnea?

Obstructive sleep apnea occurs when the throat muscles relax and blocks the airway during sleep. It is also one of a few types of sleep apnea disorders.

How does one diagnosis this?

In order to diagnosis sleep apnea, one has to partake in a sleep study at a Sleep Center. Generally when you go in for a sleep study it is after hours around 6 pm and you check out at 6 am the following morning. Sounds simple enough, right? Wrong.

Our son Jaxson didn't like to have the CPAP in his nose, therefore we were frequently trying to place it back. There seemed to be hundreds of cords attached to his head and Jaxson wanted to rip out every single one of them.

7 Tips to make your time at a sleep study less stressful:

Jaxson in his rock n' play

1. Try to keep to your child's bed time routine. At that point in time, the only way Jaxson would sleep was if he was in his rock n' play and swaddled with his pacifier. I know it is going to be difficult to keep your routine but bringing their favorite book, stuffed animal, or blanket could help make your stay a little better. We literally brought our rock n' play with us to help him feel a little 'at home'. The blanket and pacifier helped comfort him as well.


2. BRING YOUR PHONE CHARGER. I couldn't sleep because I was either wrestling with him to keep his bandage (on his head) and keep the tubing (CPAP) in his nose, I was stressed about the results, and I had anxiety because we weren't home. I know no one will be up to talk to but you can lurk on Facebook, catch up on the recent gossip, or play Angry Birds. Nothing is more upsetting then your phone dying and you have NO phone charger.

3. Bring your child's tablet (if child is older). Jaxson wasn't old enough for a tablet but if he was I would've brought my oldest son's Kindle Fire 7 Kids Edition. This tablet is an absolute godsend on road trips, shopping trips, doctor appointments, etc. Ensure you bring the charger to that as well!

4. If you have other children, PLAN AHEAD. Please, PLEASE plan ahead. You cannot bring any other children or adult with you. Nothing is more stressful than trying to find a last minute baby sitter! If you are a military family like us it is extra hard to find someone to babysit last minute, our family is too far away.

5. Bring snacks! YESSS. Pack snacks! The two times we've gone to a sleep study they didn't have anything to eat or drink. Pack your child's favorite snack and juice box!

6. Wear comfortable clothing. This is obvious. I wore a pair of comfy sweats and a big t-shirt to his sleep study. I knew it was going to be a rough night and wanted to be comfortable. Also bring your child in a two piece because they'll have a lot of cables! It'll be easier on everyone involved if they're wearing a two piece pajama set and not a sleeper.

7. Last but not least... bring patience. This is going to be hard for them and you. They're going to be scared when they wrap their heads with bandage to keep the leeds attached to their heads. They're not going to be in the comfort of their home and stressed out. Patience is key.

I hope that these tips make your sleep study successful and not extra stressful! What tips have you found worked for you at a sleep study? Please share below!

Life as a Rare Chromosome Parent

I'm going to get a little real with you all...

If you talk to any parent who has a child with Special Needs or a Rare Diagnosis, a lot of them will tell you about their feelings with anxiety, depression, and secondary trauma. I have experienced ALL of these feelings or symptoms. I only shared my feelings with a select few so this might come off as a shock--"I didn't know you felt that way."

Anxiety

"A feeling of worry, nervousness, or unease. - Dictionary."

Anxiety

I had anxiety prior to this but it was magnified after my pregnancy and delivery of Jaxson. As most of my readers know, I had a high risk pregnancy and Jaxson was in and out of the hospital the first six months of life. I took him to so many different specialists, so many well-baby visits. I was frequently worried about something terrible happening, I didn't like to go out of the house, I was angry a lot, quick to get angry.. I didn't feel like myself. I especially felt like such a jerk and bad mom because I was so short with my oldest son. Every little thing he did I freaked out because I didn't want him to wake the baby, hurt the baby, get the baby sick, etc.

Depression

How to recognize the signs here (Depression in Parents of Children with Special Needs).

Depression is real

Some may wonder what did you possibly have to be depressed about? You have an amazing support system, amazing husband, beautiful family, etc.. Despite having all of these things, a person can still have some form of depression. My depression stemmed from having a child who was in and out of the hospital because he wasn't thriving and frequently ill. I felt helpless because I couldn't help him, I tried everything, and yet he wasn't thriving. I thought I had failed him as a mother.

I was up every other hour pumping furiously, tracking his consumption, thickening his feeds per feeding therapists, I literally did everything. I pumped an entire chest freezer full of milk that he couldn't drink because of his severe Reflux/GERD, I ended up donating it all to a patient I met working at the Chiropractic Office. That made me feel as if I was a failure as well, I pumped ALL of this milk for him to drink and he couldn't, he couldn't thrive off of my milk.

We did have great friends who were able to drop in and check on us during these difficult days. I'm thankful each and everyday for them. Why? Because we are a military family and our parents, siblings, and even cousins are not nearby. Friends are everything to us, they're part of our family.

Reach out to someone who is going through a rough time with their special needs children or any difficult part of their life. Trust me when I say it will mean a lot to them, even if it's just sitting in with them or something simple as bringing coffee.

Secondary Trauma

Secondary trauma, yes. You can have that too as a parent with a chronically sick, special needs, and rare chromosome child. Most people think that you can only have PTSD when you're away to war--that's not the case. Having frequent anxiety because I have a child with special needs and was in and out of the hospital can trigger secondary trauma. Whenever I had to make an appointment for Jaxson or went in for an appointment I got this anxious feeling. Don't get me wrong, he's thriving now and everything is going well thus far but I have that constant worry that he may be admitted again or he will stop thriving.

I also worry about my oldest son. A few months ago I ran him to both the Naval Hospital Urgent Care and then Emergency Room at Sacred Heart because he was having severe pain in his side. I was scared and anxious that it was something serious, something life threatening. I was so blinded by fear! Thankfully it wasn't anything serious, he was just backed up and needed an enema (poor guy).

Symptoms of Secondary Trauma:

• Chronic fatigue
• Sadness
• Anger
• Poor concentration
• Second guessing
• Emotional exhaustion
• Fearfullness
• etc. 

I wanted to share my experiences of these emotions in hopes to help another. These feelings are normal when you have a child that isn't thriving, seeing multiple doctors every week, chasing diagnosis after diagnosis, all the therapy, etc. YOU ARE NOT ALONE. The fist step is to admit and talk to someone, it will get better over time.

Jaxson's Adventure at Play Zone and Maynard's Donuts

Play Zone

I took the boys to Play Zone on 9 Mile Rd in Pensacola. My friend Lynne invited us out and I'm really glad she did, we were literally there for FOUR hours. Generally I'm a hermit because it is hard at times to go out with two boys, especially when one is special needs. I'm trying to do better because it's not JJ's fault, he's a crazy almost five year old and needs to let out his energy running around (wow where has the time gone?). I don't want him cooped up in his house all day because mom is afraid his brother is going to get sick (he gets sick easily) or gets hurt. I just have that constant fear of having to go to the hospital again.

The location of Play Zone is perfect! It's in a small shopping center and it has a donut shop, asian cuisine, boutique, Sammy Barker's, etc. You can let your little kids play as long as you can handle (lol), run over and grab some lunch, come back or go home, whatever you want to do! It's awesome. There is a baby area for children younger than one and then there was the toddler section with an awesome water bed both boys enjoyed. 

JJ in the toddler section @ Play Zone

Jaxson in the baby section @ Play Zone

Maynard's Donut Co

I've heard great things about this donut shop and I was happy to hear that it was literally RIGHT next door to Play Zone. YASSSS. They have all kinds of specialty donuts: PB&J, oreo, coconut, cocoa or fruity pebbles, maple bacon, maple, glazed, apple and peach fritters--YOU NAME IT. I was in donut heaven, it was so hard to just pick one haha. Jaxson tried grabbing it through the glass, that poor boy was hangry after our time at Play Zone.

via GIPHY

Y'all need to check them out!! Look at those delicious fruity pebble and toasted coconut donut. We saved this for last, we decided to let the kids run around for four hours first before we even thought about bringing them to the donut shop. Even in the donut shop they had a ton of energy.

Fruity Pebbles and Toasted Coconut Donuts @ Maynard's

I Heart Bento

Of course mommy had to stop into the bento shop! If you read the 21 facts about mom you would know that I'm half Okinawan and LOVE seafood. I really miss home and the takoyaki (fried octopus) definitely made me miss it even more. I just wish they weren't located so far from where we live, it's a good 40-45 minute drive because of traffic, it's crazy. I think they are literally 20 miles away from our house but the traffic is horrendous.

Spicy Tuna Poke Bowl @ I <3 Bento

The drive home...

Our little chunk and big brother definitely had fun yesterday. I will try my best not to be a recluse and do more with the kids. I'm definitely taking them back to that place in the future. 💙

Out cold

R.S.V.P. | Guest Post

Guest Post will be live on August 14, 2018

I'm so thankful that Tayla from MotherhoodRealDeal allowed me to guest post about DYRK1A and our journey. Please share and save the date!

Our Day | 07192018

Jaxson waiting for his ENT appointment @ Nemours

ENT Follow-Up

Today was our follow-up visit with his ENT Doctor at Nemours Children Hospital. Jaxson had tubes put in his ears and had both his lip and tongue tie clipped back in December 2017. Today was just a follow-up on how they were healing and if his tubes decided to stay put. It was a fairly quick visit, we discussed his most recent diagnosis of DYRK1A Syndrome and what it means for us, his ears, lip, and tongue all looked great as well. We also discussed his Laryngomalacia but she felt confident that she didn't need to check it, he's been breathing easy and stridor free, AND thriving! We were probably in that office for a total of 15 minutes!

Panera for Lunch

We had a couple hours to kill prior to our speech therapy appointment, and this momma wanted some Panera! I've never had their salad before and had an inkling for it today--I went with the Southwest Chili Lime Chicken salad with a side of Baja macaroni and cheese. I was not disappointed! As always Jaxson nibbled on whatever mommy was eating: an avocado, cheese, and some of my baguette. His brother JJ ordered a 'turkey sandwich' but only ate the turkey slices and yogurt. 

Walking around the mall with time to kill is quite dangerous. I ended up wandering into Carters (YIKES) but only came out spending $6.97 on a double pack of pajamas for JJ. This kid loves his pajamas but he's known at home as "captain underpants," lol. He's quite the character. I also ventured into Old Navy and found myself paying $6.95 on a sports bra--again, amazed that's all I spent. 

Speech Therapy

Speech therapy went well today for Jaxson. Our speech therapist mentioned that if she brought his hands together for "more" he did it in his own way. He hasn't tried doing it himself but I think he's starting to understand the signs when I do it. We've been working on teaching him: "more," "all done," "eat," "momma," "dadda," and "help." One of the common features of our DYRK1A children is that a lot of them are nonverbal for quite some time. I hope that Jaxson will start signing back to help communicate what he wants or needs. It's hard to figure out what he wants sometimes and I feel bad if it was something as simple as wanting a bottle. 

Respite Care

We found an awesome respite care provider! I'm super grateful that I reached out to one of the providers over at Eglin because if I hadn't, I probably wouldn't have found her. Jaxson took to her really quickly, I guess children really do have that sixth sense. He did really well with her today, he cried a couple times for me but he played with her for a couple hours and she even got him to fall asleep! I can't wait to schedule more appointments with her, even my oldest JJ loved her--he gave her a big hug before she left this evening. 

I just wanted to take the time to thank our readers for all of the love and support. I do have a guest post popping up at Motherhood Real Deal soon, it goes live on August 14th! Keep checking back for that link!

So, so close!

SO CLOSE TO WALKING!

Our little DYRK1A/Laryngomalacia Warrior is so close to walking!! He will be 17 months on the 22nd of this month. He can stand up and take a couple steps before falling down! He also started doing some funny "crawling"--he doesn't let his knees touch the tile (I'm assuming it's a Sensory issue) and "crawls" all over the house until he gets to the carpet. He's been crossing off a ton of inchstones the last few months, it's amazing!

Jaxson at a BBQ

The Crayola Experience | Easton, PA

The Crayola Experience

JJ at Crayola

The boys and I went with Pop Pop Jim to the Crayola Experience in Easton, Pennsylvania. It was only 15 minutes from the house and it was fun! The parking isn't too terrible, we were able to park right across the store at a parking garage. The fee wasn't terrible either, it was about $18 per person and Jaxson was free because he is under the age of three. Parking fee was about $3 an hour as well!

My oldest JJ was super excited, he couldn't even stand still waiting in line to get our tickets and tokens. Everything is on the second floor. They had a few different stations to make your crayola labels, the colors were: Red, Lime, Blue, and Purple. Once you got your crayon and label you take it to the table and swipe it as if you're swiping a credit card to wrap it around the crayon.

Our own crayons!

We went to the 1:30 show and it was very interesting. The kids sat up front as a lady and two crayons discussed how they made crayons from wax, clay, and color pigments. At the end of the tour the kids got to grab a crayon. There were other awesome areas, one of our favorites was the station (Stomp and Play) where you color a sea animal and it sent it to a screen on the wall. Very cool. Another station JJ had fun with was the computer station (Color Magic) where you scan the page that you colored onto the computer. You could pick very cool backgrounds and even send it to your own personal email address!

Toddler Area

Toddler area at the Crayola Store

There was even a toddler area for Jaxson! They had cool light up sticks--kind of like a lite brite--you could put into the wall. An area with activity cubes and a little play area you could climb around and have lots of fun. Within the same area they have an ice cream stand, sand art, and fabric art (Trading Post).

Jaxson and the activity cube.

What to Bring

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I would definitely bring a carrier or an umbrella stroller of some kind, there is a lot of walking to and from all of the different activities.

I wouldn't worry about snacks or anything either, because they have stations with snacks and vending machines for dip and dots, soda products, and water.

Definitely worth the trip! I think there are other Crayola Experiences in Florida, Texas, and Minnesota--check it out!

200 Strong

DYRK1A

As mentioned in my Telling Tuesday post, changes in the DYRK1A gene--located in the 21st Chromosome--have been linked to:

• Intellectual Disabilities
• Microcephaly
• Speech and Language Impairment
• Seizures
• Autism

and more (DYRK1A, 2018)..

200 Strong

As of the beginning of July, we have reached 200 families with DYRK1A Syndrome. Our Facebook group founder, Amy C., started the group in 2014 with one other member from the U.K. and reached up to 100 families within the first couple years. NOW, we are at 200 families! Amazing. The community is filled with so much experiences, knowledge, and love despite all of us being located across the globe.

DYRK1A Chart

A VILLAGE

It really does take a village. I do not feel alone in this journey even though the only interaction I have had with these families are over the computer with the use of social media--with the exception of meeting the Cobb family. We all have a common goal, to raise awareness, to put ourselves out there and be known. Not even a language barrier can stop us. I can't wait to go to the next Meet Up in 2019 and meet our growing family!

SPARK

I've decided to go back to school as well with our recent diagnosis of DYRK1A. I want to be able to work from home and take care of Jaxson when he ages out of school. I don't want to have to worry about him in the future. I'm currently pursuing a degree in Medical Billing and Coding at Ultimate Medical Academy--boy it's tough! Definitely tough trying to focus on my academics and juggle two kids but Jaxson and his brother JJ have put a spark into me. A huge spark to better myself and keep fighting.

I'll be graduating with my degree in February 2019, if you know of any organizations or companies that need a Medical Billing and Coder please let me know!

References:

DYRK1A. (2018). Retrieved from http://www.dyrk1a.org/start-here

An Open Letter to My Oldest Son

 Dear JJ,

I'm sorry.

Mommy is sorry for all of the times I have lost my patience with you. I know you don't understand now but I hope you understand when you get older..

You see, mommy loves you so much but she is overly stressed with taking care of your brother every minute of every day.

I know it doesn't make it right, but it makes mommy human. 

I know you get jealous and I am trying to do my best to juggle my time with you and your brother. You may not understand his condition but Jaxson needs a lot of my attention right now.

I love our movie and ice cream dates.

I love our tickle fights.

I love how you say "Smash-potatoes".

I love your creativity and imagination.

I love that even at almost five years old that you still love to give mommy kissies and cuddles.

I want you to know that I am so proud of the little man you have become. You are so smart and so sweet.

Love, Mom

Determination

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!

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

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!

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!

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.