I am in awe that Failure to Thrive No More has been nominated for the Blogger Recognition Award! My friend from Witte’s World has nominated me and it truly means the world to me. I’m thankful to be recognized by such a wonderful blogger like Linda! She has created an amazing support group at For the Love of Blogging [GO JOIN], writes amazing travel posts at Witte’s World, and has helped me on my journey of blogging.
I’ve been challenged by Monica at A Coordinated Life to make a list of 50 Things That Make Me Happy.
Here are my 50 Things!
2. Husband – he is amazing!
3. My boys
9. Blender – I love smoothies/smoothie bowls
10. Garage gym
11. CrossFit – I have a love/hate relationship with burpees
12. Japanese food
15. Blankets – my husband freezes the house
18. Investigation Discovery – hehe
19. Special Needs Tribe
21. Food Channel – I love Halloween/Cupcake Wars
27. Yoga pants
32. Italian food
36. iMac – I know, dumb
39. Fuzzy socks
40. Earl Grey tea
42. Short hair
45. Blogging friends
47. Presets – make my photos look pretty on Instagram
48. Big shirts
49. Chuck Taylors
50. Ergo Baby carrier – I’m so glad I invested in this!
Now I am going to challenge the following bloggers to make their 50 Things That Make Them Happy.
What makes YOU happy?
|Even fits my five-year-old!|
|Jaxson in arrow on arrow poncho|
A little about Birdy Boutique: Birdy Boutique is ran by two sisters with children of their own in Michigan. Joanna is a retired Elementary School teacher in Michigan with her two toddlers, and Barbara is a Retired Army Veteran currently residing in Virginia with her Active Duty husband and two children.
*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!
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!
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10 Reasons Why I am Excited for September!
1. September means that fall is near.
I absolutely LOVE fall! I love how the leaves change colors, and the coolness of the mornings when I’m waiting at the bus stop with my boys.…
*This post may contains affiliate links, for more information please see my disclosure here.
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?
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..
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?
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.
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.
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?
|Jaxson hanging out in the kiddie pool!|
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!