Friday, January 31, 2020

Axel is Mobile!

Hey everyone!
I hope you are enjoying winter! I'm not, but I hope you are. lol

Axel has had some Major developments recently and they are the perfect excuse to do an update! =D

This Link is The Update From November. Axel Turned 2, On The Perfect day
Today, I am just adding a few {{BIG}} things.
                                                    Like this sweet smile 💗

I don't even know where I should start. <3

In my last post, I told of how great Axel was doing in his gait trainer.
He's been using it at therapy for a few months now.

All of a sudden, a couple of weeks ago, he began using our hands to pull himself to standing!  ....even though he can't sit yet and is too busy walking, to want to try. lol
He figured out pretty quickly (1 day) that he had some control while being up there and began to take steps! (With full support, of course!)

Fast-forward about 3 days (yes, it was way faster than we ever expected!), he began positioning himself in front of my husband and I. He'd scoot over on his back, feet pointing at us and grumble. If that didn't work, he would full out cry! Not many things require a full cry, from him. Being deaf, he has recently realized the power of his cry. He feels it and didn't  understand that we hear him. He doesn't  understand what hearing is, since he's never known it.
He now knows exactly how to use his "mommy and daddy button". lol! He'd raise his hands to grab on to our fingers, and stand right up! If you had other ideas, he always has a way of convincing you that his is better. lol

Anyway! He quickly went from demanding to stand, to demanding to be walked around! (in 3 days... he amazes us!)

I realized after about 2 days of being his walker, that my rheumatoid arthritis would not hold up under the constant strain.

I began calling his therapy people, everybody I could think of, to see if anyone knew of someone that had a gait trainer (like the one at therapy) that he could use.
I quickly got impatient (and exhausted by walking, lol) so I took to facebook with a big mission!
I joined a few new groups that I hadn't thought of looking for.. 
-special needs equipment swap/sale/barter- and the alike, in Michigan.
(finding one in Cali wouldn't help us much!)

THIS is where the story goes from sweet to mind blowing!
Within a few hours of pleading for my sanity, I mean a gait trainer,😆 TWO people let me know that they had one for us!! 
Saying we were blown away, would be a huge understatement!

Giddy with excitement, the next day we went to therapy and Axel tested out the 2nd option, just to be sure it wouldn't be better for him (and it definitely was not, lol. Here's why.. silly boy..)
                                             He isn't looking too bad, right? Next...
....and here we are.. haha 
                                    He's just SO happy about it!!
Too bad, buddy, that isn't really a position that we encourage you to walk in. lol
So we determined that the same kind he's been using is best and ---

wait for it---

TWO days after my initial plea for help, I drove almost 700 miles to retrieve the walker in Michigan's Upper Peninsula, almost as far away as it could be and still be in Michigan.
Technically, as I was praying for the situation, I told God that as long as it was in Michigan, we would be able to figure it out!
Well, I could have been slightly more specific, it turns out. haha

To be honest, I have never driven that far by myself but I really enjoyed it! K-Love radio easily kept me singing along, upbeat and happy.

I believe it was truly God's hand at work, in this. 
The fact that the 1 person we needed, seen my post within a few hours, is quite amazing. 

What does allllllll of that mean!?

                           Axel now has his very own gait trainer!
Our home isn't big enough, but he will get to refine his movements, that's for sure, as he gets stuck all the time. lol
We take it with us to his grandparents house (they have more room <3) and look forward to taking him to the beach, mall and anywhere else that we can!
The more practice he gets, the better he will get! 

The pride ( & smiles) written all over his face, as he walks around, discovering doors, drawers and things, has got to be the absolute best feeling in the world, to a parent -and to him, I bet!!
His newfound independence is lighting up our whole world.

Here is a sentence that I thought would take years to speak-
AXEL IS WALKING!! (with help, but that part of the sentence just doesn't seem important.)

As if that new development isn't enough, there is more!!

I don't know how many of you are familiar with school district programs for kids that need additional support (before school age)? 
For us in Michigan, it is called Early On or Early intervention. It begins very early and goes until the child is 3. Then, they start school =O
(I am in shock that Axel will start school this year!!)

My experience with Early On has been fabulous! 
We have had the same physical and occupational therapists since Axel began when he was 4 months old (His speech and deaf teacher haven't been around quite that long but they are just as awesome!). These ladies are the best we ever could have asked for! After nearly 2 years, working with him, I can tell they care about him and desire to help him do all that he can. <3
You just can't find people like that every day!

Now that you have a little background on it, I can tell you the BIG news!
Axel's PT (physical Therapist) requested a grant from our school district to get Axel and 1 other little boy, ride on- push button- cars!  

Cooler than that??


Could it get any cooler!? YES!

The foundation that "gave her the idea" is called "Go Baby Go- Cerebral Palsy Foundation". If you haven't heard of it, Check it out on Google!


They are a wonderful foundation but super busy- as I am sure you can imagine! 

So our PT went above and beyond, again.

She got the instructions from Go Baby Go (for free, anyone can get them!!). She then called our district schools because their robotics teams can make it a "Switch" car (meaning that a button, switch or whatever works best for the child, is added and the gas/brake pedals are no longer used). 

His therapist will make all of the seating accommodations and our middle school will get to work on the electronic parts, for us!! 

She brought his new car to visit him last week, lol, so she could see what needed to be done to it, for him to be able to sit in and use it.

THEN, last Sunday (yes, on a weekend!!) she and her husband brought it for a final seat fitting. 
THOSE are the OTHER pictures that I have to share!

The pictures aren't great, but when we get the bad boy home, we will be getting a LOT more! lol

This car has quite literally knocked my socks off!

First, it is a Maserati, so it is the coolest looking kids' ride-on, I have ever seen. lol.

Check out the list of "factory" features on this bad boy, it is fully loaded!

There are hydraulics, Awesome hubcaps that light up with colored LED's, Head & tail lights, automatic doors, fun buttons to push with lights on the dashboard. It has a working radio, too, but it will do no good for Axi, so we are going to create a place to install his bass boosting speaker, so he can get some vibrations from it.
The top feature, though, is that it's also remote controlled!
To sum it up, He is going to be cruising in Style, BIG time, this summer!

When his little legs tire out from all of his gait training, we can "hop" him into his car and he can go for a spin!

And FINALLY.....

As excited as we are for those awesome things, there is one final thing that tops both (and that is saying something)! BBBut I don't have any pictures of it, because we haven't gotten it, yet. So I will mention it but leave the details for when I can show it, too. ;)

The only thing that could top the awesome-ness above (I think!?), is the fact that Axel will be getting his AAC communication device (AAC= Augmentative Alternative Communication) within a matter of weeks! 
Yes, I think we all agree, communication pretty much tops everything!!

In the last update- Axel Turned 2, On The Perfect day I mentioned the AAC device at the end but found out recently that his AAC device has been ordered and it will be here in February!
His speech therapist and teacher of the deaf are the perfect people to have on the case! They recognized right away that a "standard" AAC device wouldn't be quite enough for him. 
With a "Standard" device, you push one of the buttons and a red border outlines your choice.
There is no feeling of it being pressed and of course, Axel can't hear it say what he wants to say. So to him, there wouldn't be enough of an indication that anything had been pressed at all.

SO, his therapist got in touch with a specialist and found a device that will light up with his option! THAT is the perfect way to help him realize that he controls what is happening! 

I am just a bundle of nervous energy, these days! Lol
We are so excited to bust Axel's world right open to wonder that he has no idea is awaiting him! 

I share all of this with you all for a couple of reasons. 
I love posting Axel updates, for 1. Lol
Also, I am hoping that it could benefit another family.
I didn't know these things were even a possibility a few months ago. 
If we didn't have an awesome team that thought of them, we would be clueless.

You know my favorite phrase right?
It fits here, too..

We Can't Know What We Are Unaware Of!

The moral of this story?
If you know any children that struggle with mobility, there are options.
REALLY Cool options, too!
All you have to do is talk to people.
Lots of people. ♡

I hope you have a wonderful February!
God Bless!

Monday, January 13, 2020

How To Help Build Neck Strength

Today's Awareness post is a little different.
I am very happy to raise some awareness for neck strength and give a bit of direction that could assist anyone searching for specific help on this topic.
In this post, I will list and detail positions for building strength in the neck. Neck strength is a BIG must for head control.
Many of these exercises work on other areas, as well - back, core, legs, coordination of movement and hand/eye coordination, among other things. They also help the child to realize all of the fun that can be had while being upright! Sometimes, that realization alone is enough to drive our sweeties to get a move on. 

If you think about it from their perspective, for a moment.. 
Every day you play on the floor. You are comfortable there. You can move this way and that, to get to your goal- that awesome light-up toy across the room. 
The key here, is that you KNOW how to groove on the floor, your confident and in control. (Even if everyone tells you that it's HARDER that way)!
Then imagine someone telling you that they want your body upright. 
I imagine you'd feel disoriented, uncomfortable, insecure, and maybe just flat weird! 
Without core muscle and neck strength, holding yourself upright seems like an impossible feat. (Especially to someone who has never accomplished the action on their own).
I'm not sure how many kids have a similar situation to my Axel (but I'm going to put it out there, just in case). We realized that since birth, we have to teach Axel everything. 
We inherently have these "knee jerk reactions" (or reflexes in some cases) to a Lot of things, but Axel doesn't. We have to teach him how to respond to everything. (example, I built towers for months, without so much as a sideways glance from Mr. Babyman. Then one day, a little before he turned 2, I repeated my process. To my surprise and enjoyment, he high-tailed it over to the tower (faster than you would think he could, on his back!) and has been knocking them over ever since! I am saying this only to point out something that I feel could be really important, for some people.

If we don't force them to move outside of their "box", they may not understand what you expect from them or that they are even capable of it. That would obviously have negative results. Flailing around, trying to push out of the position, crying. Almost always ending in the same way, with frustration- from both of you!
The end result there, is a little champ that will go to any length to avoid that position, again. It wasn't fun the first time, so why should they want to try again and again. I don't know how strong your sweeties are, but my guy has been working himself to the bone, since birth.
I think he could take Popeye, even with the spinach! lol

Let's jump right in!

I've mentioned before that I am a member of several Facebook groups regarding special needs.
I am in groups for Dandy-Walker, Hydrocephalus, rare diseases, deafness, superheroes (for kids battling anything and everything), muscle tone, tube feeding, colostomies and believe it or not, there are more. Lol
If you have questions about something, there is a facebook group for it, almost guaranteed. 😉That is one thing that we have a lot of, questions..
With Axel's situation, the clear answers are few and far between.
Having parents, caregivers and professionals at our fingertips gives us more information (facts and helpful ideas) than we could ever hope to find, otherwise.
I do my best to offer any help that I can and I ask others, often.
Last week, I ran into the post of a mom looking for different therapeutic ways to improve neck strength and head control, for her baby. 
As her guy has Dandy-Walker, like Axel, I was pretty sure that I could give her some ideas on things that could help. 
Every single case of Dandy-Walker (DW, DWM, DWV) is different, but many of our kids have tone issues, as a result.
If you have been following along with me, you know that Axel has been working hard on head control his whole life (He's 2). He's making great improvements, but it is not a short journey. - However, there are many conditions that can affect muscle tone.
Axel has been in therapy since he was 4 months old. Last year, he had over 300 therapy sessions. I have been shown countless ways to help him get stronger, improve endurance, gain ability and get more comfortable in positions that he is yet to enjoy.

It hit me as I was detailing some ideas out for that mom on Facebook-
this is one mom seeking help for her child. I just bet there are others out there seeking the answer for this same question. 
With all of the information on the internet, sometimes things can be hard or impossible to find. 
It's my goal to make the information accessible within a single post (maybe?), with easy search tags and as much helpful information, as possible. 
Then, these ideas can be more accessible to the people who need it most! 
I am not a doctor, nor do I have any special training related to the topic. However, while living life and learning (sometimes difficult) lessons, I try to pass on whatever help that I can.
I'm going to do my best to describe positions. If I am able to get pictures of those, I will post them asap. If pictures would help you, please let me know which ones and I will do my best ;)

1. Pretty much everything that I list here needs complete adult supervision, most of it being hands on.

2. Keep all of the best toys for work-time. We reserve the exciting light-up  toys that you have to look down on to see/use well, for sitting/standing, only.

3. Keep in mind what you want baby to be doing with each position and try to have toys available to help facilitate that. For instance, if you want baby to use eyes only, a toy that needs buttons pressed to light up won't be a good choice. However, if baby is mastering the tough parts of a position, adding a toy that requires more brain power could help baby learn how to do complicated things while in these positions. You will find that as they get more confident in these positions, playing with a toy will be easy and the position will take much less thinking and focus than it did originally! Yay!

4. Consider any "equipment" that baby may already have, to help. Feet braces (AFO's and the alike), support vests or anything that may make it easier. (Another set of hands never hurts, either!)
However, I found that sometimes the less extra stuff on Axel, the better. He rarely uses his support vest while we work on certain things. I found that he will actually focus more on himself and less on what his body is doing, if he has it on. At this stage, it's best to keep the focus on the hard parts.

AFO's are necessary for standing - unless you are told otherwise by your doctor. 
What is the purpose of an AFO?
An ankle-foot orthosis, or AFO, is a support intended to control the position and motion of the ankle, compensate for weakness, or correct deformities. AFOs can be used to support weak limbs, or to position a limb with contracted muscles into a more normal position.
Foot placement is one of the most important aspects of standing. If your child has AFO's, that means that their feet need extra stability and  help to stay flat, as opposed to pointing downward or to either side, etc. Repeatedly standing a child that uses AFO's on bare feet could have a drastic impact, for life. Not only could baby's feet suffer, their legs, hips and back could, as well.
If standing, try to have at least a hand worth of distance between their feet (they generally line up with hips). This keeps the hips in a nice aligned position. If the feet are too close together, the hips don't "sit" as good together. BUT - If they are too far away from each other, it is harder to stand on them. Over time, it could cause more severe difficulties.
Google says; When babies start pulling to stand, the alignment of their hips is still slightly flexed and rotated in with their legs bowed. Their feet are placed far apart from one another to increase their base of support due to decreased standing balance. They are flat-footed and bear weight through the entire bottom of the foot.
Note: I refer to this more with the use of **.
{** Using both hands, hold top of baby's shoulders, with thumbs extended on baby's back near their neck- this adds additional support vs thumb in with hands at the outside of shoulders = less support. Finger position on front helps a lot, as well, splayed fingers for more support, touching across front of the neck, if necessary. 
Or closed fingers closer to the edge for less support.) - this gives baby freedom to move his head however he can, so extra care is necessary until they don't fling too hard or too fast..**}
Sit baby between your legs using whatever back support they require 
(closer to your body for more support and further out for less and less
back support- to where your hands in the (above) ** position is enough,
even if he's reliant on those hands to stay up. Think of when a baby sits,
kind of poured over their lower body.. Severe bad posture, is the best
way I can describe it, I guess, lol..

Depending on how his sitting is going, a portable highchair (that straps
onto a regular chair) could be a good option. In my opinion, those are
smaller and offer less support, forcing the little one to rise to the
occasion and try to do it on their own. - But not if he sits almost
board-like and stiff, in it. We put ours away again, after giving it a try.
If baby sits okay in it- use of a pillow or small rolled blanket on the
sides, could be enough to make it work and keep them from tipping
back and forth.

You can roll a blanket nice and firm, and put him on his belly with it
under his armpits- and show really exciting things (at eye level)-
just high enough that his chin could get parallel with the floor. Even if
he tries, its awesome exercise!

Log sitting, put baby on your thigh (closer to u for more back support,

further away for less back support) **hands as described in #1, with
baby's feet planted on each side of your thigh.

(from almost any sitting position) Axel will stretch to stand- leaning

on me, then sit back down. Recently, he began to do this constantly
and will push himself harder than anyone else would. In the space of
15 minutes, he did 20 repetitions (that is a lot for ANYONE! His desire
made all of the difference. If it was MY idea for him to stand, he
wouldn't be quite so cooperative. lol) but he is stronger than you might
think. When he's done, he literally pushes himself to the floor, giving
you no choice but to follow. He is very confident moving everywhere
on his back, so the floor is his territory. 
{Side note; While Axel uses AFO's, his feet are not an extreme case.
Discuss with your therapist if there is any tolerance for standing with
out AFO's on.}
I sit (leaned back) indian style in our chair and sit him on my pelvis or
mid to low stomach, with my hands in the ** above position. As he
gets stronger, start rocking gently to add the extra work of
head control while gravity works against us.

We began sitting Axel against the couch and i put my hand on his chest

firmly, so he doesn't tip over. An extra set of hands helped to show him
books and he sat for 10-15 minutes.

When Axel was younger, basically birth to about 1.5 years, he threw his

head around like crazy. I called it his wrecking ball. Lol. It could wreck
you quick and leave you seeing stars. But he loves hanging upside
down (crazy, i think!) and shaking his head and wiggling like a loon,
so do give some freedom. They are just discovering all of the
wonderfulness their little bodies can do .
Just beware of allowing too much freedom, too early.

In most of my suggestions you need to find his comfy spot. 
If he's very new to sitting- sit him on your lap facing outward and
allow him to lean on you and use your chest to hold his head, but giving
him the ability to look side to side without all of the heavy head work.
That alone is good exercises for a little guy. He's still holding it up, he
just has a crutch (your chest) and a little less gravity pushing him
downward. This also allows him to experiment with turning his head,
without losing so much control. 
You may just see a lit bulb go on, as they realize they can do it!

Since I touched on standing a little bit, I thought I would throw a few

of those exercises in, as well. 
In my opinion, the beginning of standing is easiest if you have complete
control. So I find that in the early stages it is best to use you and your
body. You sit on the floor with your legs out in front of you. While
holding baby under the arms, lift him enough to get his feet on the
In these early days, it can be fun to just allow them to raise and lower
their feet, as they test the floor beneath them. Almost like a bouncer
seat. As they progress in that position, let them stand on the floor,
with your complete under arm support, also letting him lean against
you as necessary. I would then find ways to help "prop" him
(against a couch, chair, table, toys, your leg, anything that can help
free up an extra hand for you). While standing there, offer toys that
can be played with. Help him to see that with the upright posture,
his hands are free to explore.

Axel is almost 26 months old, so my suggestions may or may not work for you.
It really depends though, of course, on many things.
He has Dandy-walker, hydrocephalus -shunted, rare deafness, hypo belly tone
and hyper arm and leg tone. His dandy walker stole all of his motor skills and
he's been working really hard for 2 years to learn everything.
Just remember that it's a big range and everybody does things at their own pace.
Your guy or gal may easily accomplish the exercises I mentioned and need more,
or you may have to work up to them.
Whatever the case is, just working with your baby will to teach them. 
Even if it takes weeks or months to accomplish a goal, work towards that goal
and you are sure to see results! 
Sometimes, we need to remember to keep our goals in clear perspective.
Don't shoot for the moon right out of the gate. Set that BIG goal, for sure, but
in the mean time, set small goals that will be more easily accomplished.
If they are too lofty, you and your baby will feel frustrated.
Instead, celebrate every (little and big) thing that you can!
Some people get to celebrate those awesome 1st steps and others get to
celebrate every small step it took to get there.

Take your time while exercising. Give yourself and baby time to adjust to your
requests. Rushing through steps could lead to confusion and disorientation.
Keep it calm and as fun as possible. You Definitely want him to enjoy it so he
will want to do it again and again!

Most of all, pour your LOVE and TIME into that baby and get ready to be amazed!

I really hope this information helped you and your little one!

If you have any questions, please ask, if I don't know it, I have
tons of resources to help you figure it out.

If ANY of this information seems confusing, please let me know!
I re-read everything more than a few times, but by then it all kind of blends

My goal is to help YOU, so please, let me. ;)
If you have any questions, tips, comments or progress you would like to share,
we would really love to hear it!

Please share my post with your friends that may benefit, let's get this
information to those that need it!! 

Have a wonderfully blessed year, Everyone! 

"Get Your Awareness On!"

"We Can't Know What We Are Unaware Of!"