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! 

Top Two Breakfast Essentials

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Growing up I've always been into sports and fitness, I guess you could call me a tom boy. I rather climb trees and play sports then play with barbies. I grew up playing soccer, took ten years of karate, volleyball.. fast forward to adult years I'm into body building, powerlifting, and now olympic lifting and CrossFit. How do I have the time? I make time to take care of myself. I find that working out is a huge stress reliever for me! My life is pretty hectic right now with trying to close on a house, packing, purging, taking care of the boys--all while my husband is away. Even if it's 30 minutes a day, it is enough! It is important to make time and take care of yourself. 

I just wanted to share with you today what I like to eat for breakfast. I'm on the go a lot so it's very important that I eat something filling to keep me full until lunch!

1. Oats

Very simple to make and very filling! I had an intense workout yesterday and I decided I needed a bowl of oats for recovery. I like to use quick oats because it cooks a lot faster then old fashioned oats. Quick oats generally cook in 1 1/2 to 2 minutes whereas old fashioned oats can take up to 3 minutes or longer in the microwave. I've even cooked them on the stove!

Ingredients:

Quick oats, any brand will do

Milk of choice, I used almond milk

Cinnamon

Pumpkin pie spice [told you I loved pumpkin]

Your favorite toppings: fruit, nuts, chia seeds, etc.

Mix oats, milk, and seasonings. Microwave for about 1 1/2 to 2 minutes, stir. Then top with your favorite toppings! I used chopped bananas, chia seeds, and a McCormick Breakfast Topper for my oats yesterday. I also like to make scrambled egg whites or sunny side up eggs to add protein!

2. Acai bowl

Another simple dish! You can buy powder form of acai but I find that the frozen packs are a lot easier to use. With the powder I had to put so much into the smoothie to get it the right consistency. The frozen puree pack I just added milk of my choice and a fruit. Easy!

Ingredients:

1 frozen puree pack

1/2 banana

1/4 cup almond milk

Your favorite toppings: coconut flakes, fruit, chia seeds, nuts, etc.

Blend the frozen puree, banana, and milk together until smooth consistency. Pour into a bowl and top it off with some delicious toppings! In my photo I have coconut flakes, chia seeds, blackberries, and the other half of the banana. I also make a side of scrambled egg whites to add protein.

As you can see my Dyrk1a Warrior enjoys it too! I need to start hiding in the kitchen, he's a smoothie bowl bandit!

What is your go to breakfast?

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

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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!

10 Reasons Why I am Excited for September

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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.

2. My husband returns from training.

My husband has been gone longer then he's been home this year. He was promoted to Warrant Officer and had to go to training for seven months, we are elated he will be home soon!

3. We close on our FIRST home.

We will be closing on our very first home on the 13th. We are excited and nervous!

4. We start our new adventure in NC.

With my husband returning, we are packing everything up here in Florida and driving up to North Carolina. It's a lot to do within a short amount of time but that's military life for you! You adapt and over come.

5. My favorite TV shows come back.

Yes, my favorite shows return! I can't wait to see what happens with the love triangle on Grey's Anatomy.


via GIPHY

6. All things pumpkin!

This should've been on top of my list! I LOVE everything pumpkin. Pumpkin cookies, pumpkin coffee, pumpkin bread, pumpkin pumpkin! I drive my husband crazy but you only get it a few months out of the year -- you have to take advantage of it am I right?

7. Halloween is near!

Our family is really into Halloween. Last year we were the Bat Family, the two years before that my oldest son, JJ and I were Jack and Sally from the Nightmare Before Christmas movie.. I'm excited for this year's theme, stay tuned! Our oldest is still a little indecisive and there's time!

The Bat Family

8. Fall styles.

I can't wait to bring out my plaid flannels, skinny jeans, and boots!

9. Pumpkin patch.

We have been going to Holland Farms here in Pace and can't wait to see what they have to offer in North Carolina.

10. Decorating for fall!

I cannot wait to decorate our NEW home. I've been looking at all of the Halloween and Thanksgiving decorations at Target, but I know I can't buy it yet. It's so hard because everything is so darn cute!