Tuesday, February 12, 2019

Finally, Some Fun Projects!

Hey everybody!
I hope you are all enjoying 2019 and all of the fun a new year brings!

As usual, things have been Cra-zy busy for us but I was still able to eek out some sewing/crafting time. Woo-hoo

I also have a couple of updates on Axel, so this post will be full of goodness <3

Project fun, first and then we'll move on to Axel- Mr. HappyPants ;)

I know it's hard to remember, since I took a forever break and haven't posted any projects in awhile, but I am still Totally into machine embroidery and sewing.
There is little better than personalizing things for my guy and- well, everyone that I can. Do you suppose there is a limit to the amount of burp cloths people need?! lol.. Yes, yes there is.

I have made a few small things here and there.
I'll include pics of a few burp cloths that I made, as well as this awesome project that is almost finished! ..and maybe another thing or two.

            ~My Hero is now My angel~
         Awareness band for Hydro Walk

Have you ever seen those fabric panels that you cut apart and sew into a book?
I found one called "My Baby's Day". It's full of all the great things baby does- from waking up, to leaving the house, going to the park, playing, eating and others. I was only a few months pregnant when I bought it and shortly afterward everything hit the fan with my pregnancy, so it sat uncut and unloved. It was really hard to get motivated to do much of anything at that time.

All that I kept thinking about was our guy and his upcoming battle (Life).

Fastforward to now (roughly 18 months later..geesh..) and not only have I CUT the book out, but it's an actual book now! I know, I can't believe it, either!

Since Axi has profound hearing loss and is nearly completely deaf, I really wanted to make this book extra special and very interactive, for him.

I started by adding crinkle paper between 2 of the 3 page panels, rattlers to 2 pages (for a bird's chirp and a set of keys), and a squeeker to the page with a car beeping its horn.
I was thrilled with the idea and started thinking that I could define certain things by stitching around them to make them pop out (the batting in it makes things nice and poofy). I realized that my stitching would go through to the backside page. {After many talks convincing myself, I know that Axel doesn't care a wit about those mistakes and he will just love it} I added the fun parts to the pages but left it at that. -I can only take so much! haha
THEN someone mentioned "puffy paint".. (I happen to have several colors from the onsie and bib painting at Axel's baby shower). Woo-Hoo!
As soon as I looked at the book with puffy paint in hand, I couldn't decide what to do first!
Initially I was only going to do a few little things. Like those fabulous bubbles!
Once I got started, boy, look out!  =D
It hit me that I can add tons of texture to his book with the paints and make it so much more fun than just looking at the pictures. Now his book has great pictures, sounds and vibrations, textures and the added crinkle (which Axel just LOVES! It must feel soo cool in his little hands, as it crinkles up <3)

I decided not to texturize all of the pages, but I did quite a few.

 I used paint on several different things so the textures would be different.
The big dots and outline on baby's PJ's, music notes, bird, curtains, photo collage, piano, bag, crib, bumpers, cereals, pots and pans and mommy and daddy's shirts.
 
 
 
I plan to work on more books and will be putting them in my Etsy shop.
Sensory books are wonderful for every child! When kids are lacking senses and something so simple can give them a little something extra to feed their hungry little brain, it is the perfect toy. <3 

If you are interested in purchasing a texture book, please let me know!
I really feel like there are SOO many kids that would love and benefit from these. I am also going to start making ASL (American Sign Language) shirts and various other things for kids (and maybe adults if there is interest ;)
I only work 2 days a week now and spend the rest of the week taking care of our guy. For that reason, I need to find ways to make some supplemental income. Times are tough right now and with all of Axel's needs and doctors appointments, it isn't looking like it'll get better any time soon.

Now that I shared that fun -it's time for an Axel update!

He is 14.5 months old, it's really crazy how fast time goes!

Our little guy continues to amaze us more and more every day.
He has been working really hard on holding and controlling his head. He can now hold it up for several seconds and repeats over and over. He is also rolling towards his right side like no tomorrow! He is practicing both so much and showing tons of progress!!
He signed his very FIRST word!! That hasn't happened more than a few times but we are working on a few signs and hope he will grasp them! 
It was hard for me to "get" at first.. Saying a first word and signing it are so different. You almost don't recognize it as the huge step that it is. Language is language, after all, signed or spoken!
If you can't hear and you learn to respond with a gesture- that is Huge!!
If your a baby (or child), can't hear, have a severe (global delay) motor skill delay as well as countless other things to deal with- it is News worthy!!
I need to find the highest mountain-Quick! The world must hear the news! =D

On that note, I am working hard to learn ASL (American Sign Language). I know I am on the early end of it and that is just how I want it.
I would be lying through my teeth if I said I wasn't terrified. This is how our boy will communicate (we pray he is fully able to). It scares me to death that I could really struggle with the language and not be able to communicate with my son.
ASL is such an amazing and beautiful language. I have been to 4 classes (out of 10), and I have so much information, already! My head still hasn't stopped spinning! I try to practice every day, to retain them all.
When I first began, by watching videos, I thought for sure it would be impossible. I was terrible in school and never did well in any foreign language. However, the more that I learn of ASL, it repeatedly strikes me that so many of the signs are what you would expect them to be. That helps in big ways!

I believe I shared about his shaping helmet, in my last post.
We have been in for re-fittings about 6 times. If a spot isn't quite right it will leave red marks and can breakdown the skin. With Axel having a shunt and hearing aids it was vital that it fit well, so it wasn't rubbing on those areas (possibly hurting his shunt, requiring brain surgery to fix). We are done with that, though, we had hoped Axi's head and soft spot size would mean we would have extra time for the helmet to work and that didn't turn out to be the case.
While I really wanted the helmet to do it's thing, it was so hard on my hands (constant Rheumatoid Arthritis flare ups, are really not great fun). Sometimes I can barely get it on him, let alone lift his head with the fingers I can hardly move.. But- you do what you have to do and suck it up, buttercup. ;)
Anyway, I wish we could have gotten more out of it but I am thankful to be done and so is Axel!

He got his AFO's (feet braces for positioning, to get ready to walk and put weight on his feet)! They are so cute. With sea life all over them. lol.. It is so funny what you can customize these days!
I will say though.. Those are almost as much fun as the helmet. lol 
The little stinker.. Before I could even get the 2nd one on, he had his foot 1/2 out of the first one, already! I put them back on 6 times in the space of 20 minutes (it  easily takes several minutes to accomplish even one..) and then called it a day, while I had hair left on top of my head! lol.. We got the strap adjusted and now he has no luck getting them off. Yay, mommy wins! =D

In Mid-December we finally went for Axel's Cochlear testing to see if his ears are compatible with the implant. Those tests are the MRI, Cat Scan, ABR and EABR tests. Basically they look at the structure of the entire ear and brain with the scans- to make sure the necessary pathways are present.
The ABR (auditory brain response) and EABR (Electronic ABR) are used to measure the sound that he hears. Volume wise with the ABR and brain response with the EABR.
It was a long day, followed by news that we had been praying against for months and months.
The doctor told us that Axel has something called Neural Adaptation.
There are no blockages that would keep the cochlear implant from being implanted. However, his brain isn't getting all of the signals that are getting pushed through. His nerve will send a sound to his brain stem, but then it needs to rest before it can send another sound.
I have spoken with more than 2 dozen audiologists, doctors exc. seeking information about this "Neural Adaptation" and as amazing as it is, not a single person has ever heard the term before.
I then explain it to them, as I heard it and hope that somehow they can discover more about it.
With that MRI it was also found that he has a couple of other things going on, that we were unaware of..
Axi adds another new doctor to his list. An Endocrinologist.
A condition called Septo-Optic Dysplasia can affect (among other things) the way hormones are created and distributed. We think everything is good, there, but knowing that it is good and being aware of it as he grows, will be important to make sure it doesn't change over time.

Dandy Walker Malformation changed a lot about our little guy.
It is termed a "hind brain malformation". It caused abnormalities and anomalies throughout his body. The most noticeable was his lack of anus at birth.
If you can lack that, who is to say what else could be different.
Most especially something as delicate and precious as our seashell like cochlea, vestibular and optic nerves..

I am sorry this update got so long! I have so many things I want to share and if you can believe it, there is more. I will cover the rest, maybe lol, next time.

I hope you enjoyed looking at my long overdue projects and hearing about our miracle boy, Axel.

I am so thankful for my blog. It allows me freedom to think about and voice things that I wouldn't otherwise. It also leaves a wonderful journal of my little guys journey and I look forward to reading through all of these posts as he grows.

Please friends, if you have any questions, ideas or Anything that you think of, drop me a line. I look forward to it!

Until next time, stay safe, take care and God Bless!

5 comments:

  1. Your life is so disciplined. You are working hard to learn everything that can make your bonding better with Axel. I am impressed to see your dedication for the artwork you do. For me, you are a perfect example of the Best Mom. Take care :)

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  2. You are so wonderful! Axel is so lucky to have you and the rest of the family. He is so loved. It's so cool that you're learning sign language. Before long it will be second nature! You're doing great learning it! I've always thought sign language was amazing. What a neat sensory book you created. Such a cool idea! All your projects are so pretty! Thank you for the update! Happy Valentine's Day! Have a sweet day! :-) :-)

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  3. First word signed - hooray! Hooray for all you do for your little warrior - he is one lucky guy. The sign language will come, it is hard, and to say you don't have a gazillion things occupying your brain would be a lie, so it will work its way in. I love you getting carried away with the puffy paint - what a fun fun book for him - and yes for other children that need it. Good luck with your sewing projects and hope one catches on like wildfire and helps you support your family. I'm a bit away from kid things for now, but I know where to look if I need any and where to send folks if they need it. Do you have a link for your store. I can put it on my blog and we could maybe get some of the 2017 bloggers to help with that...

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  4. This post is absolutely brilliant! Thank you so much for sharing!

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  5. Thank you all so much for your sweet words! I am overwhelmed with them and don't even know what to say. Thank you thank you! xoxox God Bless you all <3

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I truely enjoy your comments and look forward to chatting or answering any questions you might have!