Jaxson Update | 11.09.18

Occupational Therapy: 

Jaxson had his Occupational Therapy consult a couple weeks ago. The therapist recommended one hour therapy sessions twice a week, which looks like it'll be on Monday and Thursday mornings. They will be focusing on mostly Sensory (SPD) with a side of Feeding and Fine Motor skills (as mentioned before). They want to strengthen his pincer grip as well.

Physical Therapy:

Jaxson had his Physical Therapy consult last Tuesday and the therapist was pleased with what she saw. She mentioned that he was at age for gross motor skills but was concerned with his feet. She felt that his ankles were extremely relaxed or loose. She recommended we see an Orthopedist to be fitted for AFO (ankle foot orthosis) to correct his feet and hopefully help with his balance. She wants to see him once a week for a few months to work on core and leg strength.

Other Therapies/Referrals:

We had to post-pone his ENT appointment because the referral fell through the cracks some how. The office got the referral from our pediatrician but the insurance didn't. We finally received the boy's medical records from the Naval Hospital in Pensacola. The lady handling their records here will be putting their information on a disc for us. I do have most of Jaxson's referrals and genetic notes but I do not have the rest.

We are waiting to get in with the Neurologist, Sleep Center, Gastroenterologist, Ophthalmologist, and Genetics over in Raleigh.

Communication:

Jaxson has been babbling more and more. Mostly it sounds as if he's saying JJ's name, it's so sweet. He usually says it the most when JJ is at school, I know he misses him a lot during the day. He was so use to JJ being home with us but now he is gone from 7:30 to 4:30 (such a long day!). He also says something that sounds like "da-da," I guess this momma is chopped liver.

The Speech Therapist from CDSA (early steps) has me being more hands on with Jaxson as far as signs. However, when I ask him to do please, all done, and eat he does the sign for "more" or claps. They will be coming by on Friday next week to see how he's responding to me teaching him.

Overall, he's doing well!

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Top 10 Toys, Jaxson Approved!

10 Toys that Jaxson loved!

I've been playing with the idea of compiling a list of toys that Jaxson (and his brother) and I loved over the past year. As most of you know Jaxson is special needs, he was diagnosed with DYRK1A Syndrome back in April of this year. He was a potato baby up until he was eight months old, before that he was only in his Fisher Price Rainforest Jumperoo, Rock n Play, or Play Mat. 

The list I am about to share with you all have been tried and loved by both of my boys and I. I wouldn't have added them on my list of Must Haves if we didn't love them! Between outpatient therapy and home, here's what we loved!

*This post may contain affiliate links, please see my disclosure for more information.

1. Fisher Price Rainforest Jumperoo

Since Jaxson wasn't mobile until he was 8 months old, we used the jumperoo a lot in the beginning. I used it mostly when I was trying to workout in the garage while his big brother was at school. His Physical Therapist didn't recommend the jumperoo but it was the only way momma could get a workout in for 30-45 minutes. Lots of flashy lights and music for the little ones, and he was able to jump around and rock back and forth to sleep!

2. Fisher Price Laugh & Learn Servin' Up Fun Food Truck

Our boys LOVE this toy, I am so glad my mom bought this for Jaxson on his first birthday. It is extremely educational: ABC songs, numbers, and allows both my boys to explore and use their imaginations. It is sometimes known as the "chicken nugget" house. I love that this toy can be used for years to come!

3. Fisher Price Laugh & Learn Smart Car

Jaxson received this for Christmas last year. He really didn't start using it for it's intent until he was about 14-15 months old (don't forget, he is developmentally/intellectually delayed). When he does play with it, he plays for awhile! Like the toys listed above, it has fun and educational songs, shiny and bright dashboard, three different stages, etc. There are small little compartments for him to practice his fine motor skill by pushing triangles, circles, or squares into their assigned holes. 

4. Fisher Price Go Baby Go! Gumball

I didn't buy this for Jaxson until I found how much he loved it at his Speech Therapies. He loved that every time he put the ball into the gum ball that it would light up and play music. He was able to learn to push the knob down to allow the balls to come out. I was able to find the exact one he used at therapy at a consignment shop near the house.

5. Fisher Price Musical Lion Walker

I've had this push toy for years, we bought it when our oldest turned one. We decided to keep it and I'm glad we did. Jaxson has been able to learn to pull up and push the walker. The walker is helping Jaxson strengthen his leg muscles to walk unassisted. 

6. Fisher Price Brilliant Basics Baby's First Blocks

We got this for Jaxson for his first Christmas. It's small and simple yet it helps Jaxson work on his cognitive and fine motor skills. 

7. Vtech Sit-to-Stand Alphabet Train

Jaxson absolutely loved this toy. The Vtech train allows him to take the Alphabet cubes and insert it at the top, it's a small opening so it definitely works his fine motor skills. He giggles every time it shoots out to the back. It's also nice for riding and pushing!

8. Vtech Sort & Discover Activity Cube

Bright and fun! The activity cube helps with Jaxson's hand-eye coordination and fine motor skills. There are also little "book pages" to help Jaxson work on his pincer grip by turning the pages.

9. Vtech GearZooz Spin & Laugh Gearaffe

Very fun and unique. I love that the little pieces go on like a "gear"and he's able to turn the knob to make the Gearaffe sing and laugh. It also teaches the kids their colors and shapes! There are wheels on the bottom as well so it enables him to push the toy, he makes "vroom" noises with it. He loves to imitate his brother, it is the sweetest thing. There are other pieces you can buy for your little ones to turn the Gearaffe into a train.

10. Vtech Chomp and Count Dino

Just like the lion walker, we got this for our oldest son and passed it down to Jaxson. Like the Alphabet Train, the chomp and count dino allows Jaxson to push or pull the toy. When he gets older it will also allow him to learn the different food pieces, color, shapes, and numbers.

I hope that you found this post informative and that you find something that will help your little one!

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Peek-a-Boo! | Jaxson Update

Occupational Therapy Consult

Hey friends it's been a little bit! This momma has been extremely busy since our last post. Daddy came home on the 14th (a day earlier to surprise us) and we have been nonstop with purging and packing for our PCS move. 

Jaxson had his Occupational Therapy consultation a few days prior to daddy returning but I haven't been able to update you all on it. The session took about an hour and he did such a great job. She was amazed with his progress because she went over his notes that went back to when he was just a couple months old. She couldn't believe the leaps and bounds he's made since starting therapy at Sacred Heart Hospital.

The Speech therapist and Physical therapist both warned her that he doesn't do well if you take him away from momma right off the bat. She allowed him to stay next to me and kind of venture out on his own. I was actually amazed how quickly he warmed up to her because he's never seen her before. He was very curious about all the goodies she had in her box! 

You might wonder what Occupational therapy is for... Occupational therapy is to help individuals with improving their cognitive, physical, sensory, and motor skills. She did notice how he had a lot of sensory processing issues and recommended that we do some deep pressure to help him go to sleep--right now he loves to bang his head repeatedly on my shoulder/collarbone.. it's definitely painful for me, I can't imagine it being good for him. She also mentioned allowing him to crawl through bean bags prior to bed. Right now we are in a middle of a PCS move but I'll definitely look into finding more bean bags for him.

His test results were:

Grasping: 13 months old age equivalent

Visual Motor Integration: 11 months old age equivalent

So that puts him at about 12 months old which was to be expected. I already knew that he was going to be delayed greatly in everything. I'm not upset because we are proud of his accomplishments, he has come a long way.. he's definitely not the little baby they met over 17 months ago! He's eating so much, gaining, signing for "more," and walking!

Jaxson ready for Halloween!

Peek-a-Boo

We've also noticed how much of a personality Jaxson has developed over the last month. I'm actually astonished with what he is doing now. He is a lot more friendly and outgoing with strangers--he tries to "talk" to them by making "eh" sounds or yelling. He loves to play games to where he'll reach out to them as if he's going to go to them and then the last minute pull away. 

He's definitely very smart! He plays a little game of peek-a-boo with myself and his Infant Toddler Developmental Specialist from Early Steps. He would hide behind something and then poke his head out and giggle, it is absolutely the cutest thing ever. Last night while we were with our friends for dessert he was intentionally "falling" down to the floor because he knew that my husband would pull his legs and playfully drag him on the floor. He did the a few times before finding something else to do.

It is just amazing what this little Dyrk1a Warrior can do!

Jaxson playing outside

Related Post: Weighting Game - Jaxson's Fight

PCS Update

As most of you know we are PCS'ing to North Carolina next weekend and we originally planned on closing on our home on the 13th.. but mother nature had other plans. Hurricane Florence came to town and evacuated many people and caused a lot of damage. Our lawyer told us to hold off on signing until the storm passed and we reassessed (or post disaster appraisal) the house. So far the only damage was the fence--it was slightly lopsided due to the weather. The appraiser is suppose to come by tomorrow and let us know how the inside looks.

As of right now we are HOPING to close on the 26th.. cutting it SUPER close because we are leaving Pensacola on the 29th. If you're reading this, please pray for us haha. We are hoping that everything goes smoothly and we are able to move in as soon as we get up there!

Thankfully where we are going they have a Developmental Pediatrician at the Naval Hospital.. I'm just dreading finding new therapists and respite provider. Just when Jaxson gets use to our current provider... we leave! 

5 Things Being a Mom of a Special Needs Child Has Taught Me

*This post may contain affiliate links, please see my disclosure for more information.

Always be kind.

Always be kind. I'll admit, growing up over the years I have been guilty of judging and bullying and I've been subject to bullying and judging as well. I'm sure we all have at one point in time. This is a topic that many people don't want to admit to, who wants to be known as a bully or someone super judge-y? Who wants to be known as being mean?

One thing being a special needs parent has taught me is that you should be kind. Just because someone looks different, acts different, walks different, talks different, sounds different, behaves different, etc. doesn't mean that they're any different then you and I. We need to be more accepting to our special needs community, they're just like you and I but with special qualities that make them unique and special!

Jaxson is just like any other eighteen month old, he's goofy, loves to play hide and seek, loves to play cars with his brother, he loves to dance, etc.

I am strong.

Another trait this journey has taught me is strength. I'm physically strong: I can deadlift 285 pounds, I can squat 235 pounds, and bench 150 pounds.. but emotionally I wasn't strong. It wasn't until we had Jaxson that I found my strength and perseverance. I've had to fight to find answers, I've had to watch our son fight to live to thrive, I've had to fight insurance claims... our life with Jaxson is unknown but I'm going to continue to fight and advocate for him. As should you continue to fight and advocate for your child! If you think something is wrong, trust that mommy gut and keep fighting!

We are their advocate, no one else is going to do it for you!

Patience.

I can still remember when my husband told me how amazed he was with my patience with Jaxson. In the beginning we had many, many sleepless nights because Jaxson was hungry and couldn't drink enough to stay satisfied. He would take an hour to consume about 2 ounces of milk, definitely not enough to keep a baby full and sleeping. Not only did it take him a long time to eat, he would choke and gag on it as well. It was a difficult process, we had to allow him to suck three to five times, take the bottle away, allow him to compose himself, and repeat. That definitely taught me patience!

Don't get me wrong, I still lose my shit like any other mom--I'm not saying I'm a saint haha.

Hope for the best / Expect the worst.

Jaxson's genetic condition is really rare, there is about 205 world wide. There isn't a lot of literature on it either--everything is so new. What we know about the condition is that most have feeding difficulties, intellectual and developmental disabilities, seizures or epilepsy, microcephaly, and speech delays. There are numerous other symptoms or features that could happen and alarmed me when our genetics team told me. Now that I've allowed it to sink in the last few months... I can't stress about what might happen, I need to focus on what's happening now. I'll just worry myself to death if I continue to stress about what might happen. Hope for the best, but expect the worse.

If something does happen we will adapt and overcome.

It's okay to cry / It's okay to admit it's hard.

I cried, cried a lot after Jaxson was born. I cried after every well-baby visit when I found out he wasn't gaining, he was still jaundice, he was sick again, he lost weight, etc. I was a big pile of emotions and I'm sure the postpartum didn't help. I cried because I felt like I failed him, I was suppose to be his mom, his protector. Over the last eighteen months I've learned that this wasn't my doing, I didn't cause any of this, it's not my fault.

I have learned strength and perseverance with Jaxson but I've also learned that it's okay to cry. It's okay to admit that it's hard. This journey isn't an easy one, but it's definitely worth while!

Don't give up!

Update | It's a Crappy Situation

*Disclosure: This post may contain affiliate links, for more information please read more here.

Before I get into Jaxson's poop and sleep journey, I was finally able to catch little man signing for more! I'm very happy to share Jaxson's first official sign with our readers! Yay for baby signing! Can't wait to share more!

He USE to be a GREAT sleeper:

Jaxson slept pretty well in his little rock n play sleeper up until he was eight months old. We swaddled him, he took a binky, and he was golden. It wasn't until about December after his tubes and lip and tongue clip surgery that he started to sleep poorly. He also stopped taking his binky so we thought maybe there was a correlation with the surgery and sleep problems. We were wrong.

One of the features of DYRK1A Syndrome is sleep disorders. I was researching within the Support Group and found endless posts about our littles not sleeping well. Some tried different medication, a weighted blanket, co-sleeping, anything and everything. I was an exhausted momma and up until a month ago I didn't want to consider sleeping aids. Not that I have anything against sleeping aids, I am just an overly paranoid mother haha. Jaxson was diagnosed with central and obstructive sleep apnea when he was itty bitty so sleeping aids made me uneasy. Our Pediatrician reassured me that he will be fine as long as I keep it at 1mg.

We started 1mg of Melatonin mixed with his last bottle of milk and within 30 minutes he's asleep. Which is a miracle because sleep has been nonexistent with Jaxson. Sometimes you can find him up until midnight, fall asleep, and up a couple hours later. He does seem to be sleeping longer but I question his quality of sleep. I am questioning it because even with the Melatonin, going to bed by 9pm and waking up at 6am, he's STILL tired throughout the day. At this age JJ was taking one long nap at 11pm to 1pm. I know, I shouldn't compare my kids because every child is different. There are a bunch of children in our support group that don't sleep very well and I can't wait to have our third sleep study when we move.

We are PCS'ing to North Carolina next month and will have to look for new specialists for Jaxson. We have already been referred to Duke University since they have a prestigious Sleep Center. I'm anxious to see if his apnea eventually "resolved itself" like his Pulmanologist claimed would happen and to see what his quality of sleep is like.

Related Post: How to Prepare for a Sleep Study

Being blocked up isn't fun:

Jaxson didn't start having constipation issues until he was about five to six months old. We noticed that he would start to strain really hard to poop but really didn't think much into it. As he got older, it got worse. He started to strain really bad, screaming, spitting up, etc. I've changed his diet to prunes, pears, almond milk, you name it. It wasn't really helping much, but then I started Miralax. I started with 1 tsp a day per some families of the DYRK1A Support page and it worked wonders. He was no longer straining hard and screaming or crying.

Fast forward to the last couple days.. He has been doing great so I stopped giving him Miralax a couple weeks ago because I felt that he was eating better, more foods, and drinking fluids. Evidently I was wrong.. he is starting to strain again, hard stools, and now he's starting to throw up. Looks like Jaxson will have to continue our Miralax once a day routine and try to give him a bunch of pears, prunes, and peas (yuck!) to help things along with the Miralax. He still likes to eat some stage two baby foods so I'll stock up on some of that.

Do you have any natural constipation relief tips for this momma?

Previous Posts:

Jaxson Update | Signing

DYRK1A Awareness Day!

Jaxson Update | Signing

*This post may contains affiliate links, for more information please see my disclosure here.

Jaxson Update!

We have been diligently working on sign language with Jaxson, he is 18 months old and still can't communicate orally. He does babble some, but if he does babble it's few and far between. We upped our Speech Therapy from every other week to weekly per Aerodigestive Team's recommendation. He's been doing the sign for "more" a lot, he does it in his little Jaxson way. Instead of tapping his fingers together for "more," he brings his hands together. It is the cutest thing.

We've been watching Baby Signing Time a lot in the mornings per some of our DYRK1A Family. Their children loved it so I figured I could try it with Jaxson. I found that our oldest is just as interested with signing so it's turned into a family thing in the mornings. He also loves their TreeSchoolers program for the older children--very educational and fun! Who thought learning could be so fun?

Related Post: How Are First Awareness Day Went

The ten signs we use the most with Jaxson are: More, Eat, Please, Thank you, Help, Mommy, Daddy, All done, No, and Open. Below is a chart from the first episode of Baby Signing Time.

Baby Signing Time Chart

Right now he does a lot of shouting or yelling, and he cries when he's hungry. He seems to understand my signs but hasn't been able to do them himself quite yet. I'm not discouraged. I know with his genetic mutation that being able to communicate is hit or miss. Some DYRK1A children start saying words between 4 to 7 years old, and I've talked to another momma and her son is 16 and can't talk. He mostly communicates with signs and I think if I remember correctly pictures.

There are so many different ways to communicate besides being able to speak. The beauty about communication is that you can draw, write, use pictures, use body language, etc. to communicate with others..

How Our First DYRK1A Awareness Day Went

Our very first DYRK1A Syndrome Awareness Day went very well considering we put it together within a week, maybe even less. We had to come up with something very quick to promote for our special first day. Here are the stats from that day:

Dyrk1a Awareness & Information Page

-Reached 2,389 people
-567 post engagements
-10 new likes
-11 new followers

Dyrk1a Awareness Event

-Reached 11,600 people
-Shared 193 times
-162 people responded

(Information provided by the DYRK1A Group)

We were able to connect with three new families with a loved one diagnosed with the DYRK1A gene mutation!

I'm pretty amazed with how many people we were able to reach with an event that was put together in a matter of days. Can you imagine the reach we will have for next year's awareness day? I'm pretty excited! We should have our logo and color by then as well!

I want to thank each and everyone who participated on August 21st, 2018. It really, really means a lot to me and our DYRK1A family. I hope you continue to follow our journey!

How do you participate on awareness days?

Related Posts:

Telling Tuesday
DRK1A Syndrome Awareness Day
Weighting Game: Jaxson's Fight
Connecting with Another DYRK1A Family

DYRK1A Syndrome Awareness Day!

Hello friends!

As most of you know Jaxson has a condition called DYRK1A syndrome, and was diagnosed April of this year. Since his diagnosis we have found an awesome Support Group on Facebook! There are families from all over the globe on this support page, and currently we are sitting at about 205 families! That is AMAZING. With the new technology of genetic testing more and more families are getting long awaited answers for their children! Some have waited over 15 years to get answers!

Over 200 families!

Since joining this group I have become a member of their Work Group with a goal to become a Non Profit Organization. With this we established an Awareness Date, August 21st, which is significant because this syndrome is found within the 21st Chromosome.

Related Post: Telling Tuesday.

There was a Meet Up in July where many DYRK1A families came together to meet and celebrate with their warriors. There were a lot of guest speakers present as well, they are conducting research of our children to help us and others to understand DYRK1A better. DYRK1A is so new that there is not very much literature out there about it.

Here are some statistics from the new study that was conducted:

• 98% had intellectual disabilities or global delays
• 100% had speech delays
• 100% had motor difficulties
• 93% had microcephaly
• 93% had feeding difficulties
• 79% had vision abnormalities
• 67% had seizures
• 46% had an ASD diagnosis
• 61% had stereotyped behaviors
• 31% had anxious behaviors
• 29% had hyperactive behaviors
• 83% had behavioral differences
• 60% had 6 or more symptoms including ASD
• 76% had 6 or more symptoms including broader behavioral difficulties

-Thank you to the team from Bernier Lab for providing this information.


Below is an image from Simons VIP Connect with features and the genomic location of DYRK1A.

DYRK1A Features

About our DYRK1A Warriors:

For Awareness Day, I wanted to show the world that there are positives about our DYRK1A children. Positive you may ask? Many look at the negative when they learn about Jaxson and other children with DYRK1A and their condition. Our children are very, very happy! Despite everything they go through, all of the challenges, they are happy. I think that's one of the reasons that makes this journey so worth while. Jaxson is goofy just like any other child, he loves to play with his big brother's toy cars, he loves pancakes, he loves to be twirled around, and loves jamming to the movie Trolls just like his big brother. And if you talk to any other family they will tell you the same about their child.

Our children are fierce and determined. 

The Importance of Genetic Testing:

I've come across a few families who were having difficulties with getting their insurance to pay for genetic testing. I want to raise awareness of the benefits of having genetic testing done. Having genetic testing done can benefit the family because if it comes back positive they can start looking at prevention, monitoring, or treatment options. Jaxson has been in Physical Therapy since October of last year and it has done wonders for his development. He just recently started walking, unsteady but walking! Feeding Therapy has benefited him as well, before it would take him an hour to drink 2 ounces of milk! Now he's drinking 5-6 ounces of milk in less than 5 to 10 minutes! We are in the process of getting an Occupational Therapist as well. Early intervention is definitely beneficial for our children, so why are these insurance companies denying genetic testing referrals?

Super Jaxson!

Jaxson hanging out in the kiddie pool!

Conclusion:

To conclude this, I ask that you help us raise awareness about DYRK1A. Help us let the world know how proud we are of our children and their accomplishments! Help us educate the world about DYRK1A and the importance of genetic testing!
Please join us on August 21st by adding our DYRK1A Syndrome frame to your Social Media photos!

>>CLICK HERE TO JOIN OUR CAMPAIGN<<

Related Links:

DYRK1A Facebook

DYRK1A.org

Simons VIP Connect

We Have a Walker AND a Kindergartner

*This post may contain affiliate links, please see disclosure for more information.

Walking like a big boy

We got ourselves a walker!

I honestly didn't think it would happen before he turned two, he was such a potato baby only ten months ago! Jaxson has been going to Physical Therapy once a week since October of last year. He has definitely come a long way, he wasn't doing anything then, MAYBE rolling to one side but it was hit or miss. He does have an unstable gait which is one of the features of DYRK1A children but our little man is mobile!

Related Post: Telling Tuesday

via GIPHY

He definitely amazes us every single day! I'm sure chasing after his big brother on a daily basis has helped as well. He really looks up to his big brother JJ, it is very sweet. I really love the special bond that they have and I hope that it continues to grow stronger as they both get older.

JJ's First Two Days of Kindergarten:

JJ started Kindergarten yesterday (August 13th) and I surprisingly didn't cry dropping him off. I drove him to school on the first day, walked with him to his classroom, and when it was time for me to leave -- he didn't cry nor did it faze him that he wasn't going to see momma all day. I walked with some mom friends to the cafeteria for "Boo Hoo Breakfast" haha, but there wasn't anyone crying. It was a sweet idea for us Kindergarten mommas!

Kindergarten is hard

As you can see from this photo that JJ is exhausted from Kindergarten. He has been doing awesome with finding his shapes, counting, colors, and writing his name. I'm proud of this little man! My friend texted me that when she was walking with her son to class she ran into JJ. She asked how his bus ride this morning went and he said, "I don't need any help, I know where my class is!" Haha, my little independent munchkin. He's made some friends too!

How did your children do on their first day of school? Any milestones or inchstones to share?

Related Post: Inchstones Not Milestones 

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

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!

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!