Friday, November 29, 2019

Axel Turned 2, On The Perfect Day!

Hello all!

I hope you all had a great Thanksgiving!
I know we did!

Around our house, as Thanksgiving approaches, we get geared up for Axel's birthday! (On November 26th!)
It makes this time of the year even more special (and incredibly busy!!).
The fact that Axel has THIS birthday, is kind of a work of God (for lots of reasons, of course, haha).

This time of the year is really difficult for me.
20 years ago, on December 26th (1999) my beloved niece, Becca, passed away when she was 3.5 years old.
She was my moon and stars and it broke my heart in ways that can never be mended..

Fast-forward to 2005. My dad passed away very suddenly, just a couple of weeks before I was to cook my first Thanksgiving dinner, by myself.
That meal was quickly cancelled.
Missing my dad is something that hits me, often, still. He was with us until I was 23 years old, I often think of how unfair it is, that he couldn't stay longer. 

These days, I am very happy to contribute to the Big Meal, but I have never reattempted it myself.
Even thinking about those huge life events, has my eyes clouding up. Even after all of these years.
I'm thankful that he was here as long as he was but there will always be great sadness when I think that my children never got to know their grandpa.

So back to the reason THIS day is perfect!
With holidays a bit bleak and blue, God gave me the one thing that I could have NO CHOICE but to be happy about!
How could I possibly mope around and be sad with my warrior looking on!?

Definitely not!
God knew that with the sadness at this time of year, I needed my warrior to help me through it and give me the joy to persevere ♡

God planted Axel's birthday right between the 2 dates that affected me more than most other life events. 
His plan is always good.

And though I have woes (who doesn't, right!?) it is easy for me to push them away and look to the love shining in my boys' eyes. <3


I thought I would do some pictures and give an update.
It has been awhile and Axel has been working SOO hard!!

Pictures First!! <3
Beginning with a couple of early favorites, then much more recent pictures
 
Above; one of Axel's first pictures <3 - He needed to be in the oxygen tent for a short time (until we knew he had no breathing troubles), he was able to have it removed and use room air, very quickly.
Above; This pictures has always made me think of him as my little budda ♡

This is the gait trainer! 
He has to wear his AFO braces and shoes- side note, these are Billy shoes and half of the shoe unzips for easy on/off. We LOVE them!!

Another gait trainer pic. He loves to use his hands to move the wheels ♡
& about those shoes, Axel really likes to watch them while hes training. Lol


This kid was So impressed and proud of himself! & us too!! The pic was taken as he 1st accomplished going forward ♡

His therapy seat is a Big favorite! It allows him to sit up by himself and investigate toys from the vantage point that's easiest- above. We just have to hold the table on very firmly or he will bust right out. Lol
Showing off his skills!
Axel sporting his poncho! I made a cute little elf hat from the lining fabric.
 
Below: Axel's birthday pics ♡
All 5 of us went to the neat aquarium close to home (SeaLife Aquarium at Great Lakes Crossing mall) It was a lot of fun and we got to see so many cool things!
Afterward, we met some family at the Rainforest Cafe (across the isle♡) and enjoyed a wonderful dinner together. 
It was a great birthday!
Plus, Axel was happily passed around for cuddles often, so he wasn't complaining. Lol
 
 
 
He loved putting his hands on the tanks and looking. Some of them were fish bowl shaped and they were a lot of fun! He had several fish checking him out, too!


UPDATE Time!
I don't even know where to start!

Axel is now able to hold his head up without support for over 40 seconds!
Gone are the wrecking ball days of him swinging it without restraint or care (mostly, lol).
Now, he enjoys looking around and can easily lower his head back to resting, with out crashing. He will even go onto his tummy sometimes and lift his head way up. THAT is the best exercise for him! It's even better because he is choosing to do it and not being forced or molded into it!

For months now, he has been scooting everywhere on his back! He resembles an upside down inchworm. It is the cutest! He has been directing himself like a pro, turning this way or that, to get to his goal. Almost as if he has already taken drivers' training!

He loves knocking towers down.
Every once in a while, I would build a tower and see what his reaction was. Usually it was nothing at all. THEN, a few weeks ago, I built a tower. This little boy scrambled over as fast as his back could carry him and knocked that puppy over! He was so smiley about it and proud of himself! Needless to say, we built about 100 towers that day. Now, I build towers for him almost every day. Over time, he will learn how to stack them by himself. For now, he watches me stack them and tries to knock it over as soon as he reaches it - ready or not. =D
(He did stack 1 block on top of another block {and THAT is huge news}, but he hasn't done it again, so that will emerge when he is ready.)

He has been using a gait trainer, too (pictures above). Each week, toward the end of PT, he gets to practice walking! The gait trainer is a mix between a wheelchair (with a bike seat and lots of buckles) and a walker. It holds him up and allows him to use his feet to move it. He is able to go backward easily (backwards is easier than frontwards). He also began to grab the wheels and can now move himself a bit that way, too! His hands move the wheels and its helping to teach his feet that they have to move to keep up. 
It took me a few days to write this post up and on Wednesday at therapy, he totally rocked the gait trainer!!! He went across a big room (frontwards and backwards) at least 6-8 times! His hand encountered an object, which has never happened before and he took himself back to it and held on for a few minutes, checking it out. His progress in the trainer is astounding! I know very well that my guy is capable of a great many things. But to be able to problem solve as he does and sort out how to get what he wants so quickly, is beyond awesome!
 There is a long way to go, but Axel is leading the way, while we proudly follow ♡
-You should know, though, that my definition of "So quickly" has a large range.. for example- his progress in the gait trainer is over the course of about 3 months. But we expected that he would need a lot of extra time, as he does with everything else. For us, quickly can mean a lot. But even if my definition is a little stretched compared to most, the meaning is very significant. 
We are still working hard on ASL and hand signs.
He recognizes a couple of sings and we are working hard to expand his vocabulary, but as expected it is slow going.
I have an incredibly long way to go, to be able to communicate in ASL (American Sign Language) but I am getting stronger with it.
Axel and I work a lot on 2 songs. Wheels on the Bus (which is a lot of fun and is only better when we see a bus, so we can talk about the song. He has no idea what wheels, people, windows ect. are, so when we see a bus, I sign that to him, while pointing and talking about all of the cool features of a bus).
There's also the ABC song and that is his favorite. He watches my fingers and smiles, then signs that he wants "more"! 


Axel is still in physical therapy (PT) twice per week, occupational therapy (OT) once a week and speech therapy 3 times, per week. His teacher of the deaf also comes several times a month (sometimes as many as 5 times, per month).
In January, he will begin an additional session in PT, 2 in OT and hopefully communication training with a Augmented and Alternative Communication (AAC) device specialist. -This is when they teach him how to understand and use a computer to communicate, ie. using pictures to select his wants/needs. We do that now, with actual pictures, but he's still learning what to do with them. 

His doctor appointments have slowed WAY down, too, and he is able to enjoy more time being a toddler ♡

He hasn't had to be inpatient at the hospital for sickness in just over 1 year, as well! 

If my "progress report" didn't quite get it across- Axel is doing fabulously! We are constantly in awe of him and he is spoiled rotten 😉

I hope you enjoyed the peek at Axel's progress!
 

Friday, November 8, 2019

I Did It ~ Custom Car Seat, Stroller, Wheelchair Blanket ~ No Coats for Kids!

Hey everyone!
I hope you are staying warm! Michigan went straight from hot to cold! It's 25* today, Brr!

Last summer, I began to worry about what this winter would be like, for Axel. 
Bitter cold, for sure!
 
He has been in a toddler car seat for awhile now.
Gone are the days of putting a blanket over his infant seat to keep him warm, while running into an appointment..

I was already worried about how we could keep him warm as a big boy. (It feels a little silly to worry about that while it was 80+ degrees outside, but the cold sneaks right up on us and I could not let it catch us by surprise).

In and out of the car as often as he is, he needed something great.

Did you know that kids in infant or toddler seats shouldn't wear a coat?
Consumer Reports- Dangers of Winter Coats and Car Seats!
The link above takes you to the Consumer reports website and tells you exactly how to make sure your baby's coat isn't too big for the car seat.

It isn't feasible to put a coat on and off while putting him into the seat.
It defeats the whole purpose.
It takes a few minutes to get him and all of his stuff into the car. That means his door is open for a couple of minutes and the trunk has to be open for a minute or 2, too. Plus all of the time it takes us walking to and from the parking lot or structure.
 When it is 15 degrees outside, even a little wind is too much!

So I began to think about what the perfect answer could be.
Friends, that could very well be my favorite question!
I start by asking myself:
What do I need to accomplish with the item;
How do I want it to look, fit, drape;
What could be added to make it better, easier, more functional;
Is it functional as intended (better or worse);
Improvements to original design;

With these questions I can accomplish quite a bit.
Using a notepad, I start to make notes and then draw (bad) sketches of my desired outcome. Sometimes, I am off and running by the end of that stage, but other times I need to get more detailed, so I can start to see it in my head. Width and length measurments, as well as many other informations can make a huge impact on any project. So checking those things over more than a few times, is very necessary.

 Fleece was definitely the fabric of choice. ✓

A blanket made sense- but would be too unwieldy and difficult, trying to wrap and unwrap him as he's being held.

Thus, Axel's poncho was born!
I could make it exactly as he needed it.
There isn't a coat/jacket or blanket anywhere that I can find, that is This custom and made to fit!

All of my favorite projects began as a thought rolling around in my head, adding and changing things as I go.

This poncho is no different.
 This isn't the best picture of the poncho in use, but my little guy doesn't care what I want my pictures to look like. lol


His head hole is custom fit for his head.

It HAD to have arm holes because there was no way he would be ok with no hands (unless it's freezing and mama says no way)!
But I didn't want him to have the freedom of free arms all of the time.
So his arms slits have zippers! Now, he can be closed up while outside and I can unzip his arms as soon as we are inside and warm, again.

I also added a set of snapping straps to the bottom of each side. They keep it from flapping in the wind and also from dragging on the ground or touching the wheels. It can just be snapped around the chair or stroller! 😍

I finished it off with a zigzag stitch, to give it that blanket like edging and I really like that touch.

I am working on mine and a couple others, already.
As soon as I'm finished testing my pattern, they will be in my Etsy shop! 

Not only do I make them for car seats/strollers/wheelchairs, I make them standard to fit kids and adults without extra equipment, as well!
In fact, mine will be the first and I can't WAIT to test it out!

If you aren't a fan on the over the head poncho style, a similar blanket could be just the thing for you!

I will share more pictures with you all, as soon as I am able!

I'm really excited and can't wait to spread the warmth!
Are your loved ones "covered" for the winter?!

I just BET I could get some Awareness On there, too! <3

I really hope you like my poncho!
Doesn't it just make you want to curl up and get cozy!?




Have a really fabulous weekend and God Bless!

Get Your Awareness On!

We Can't Be Aware of What We Don't Know!