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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!

Wednesday, November 28, 2018

Feeling Thankful..

Hi everyone!

I hope by this point you can button your pants after the great Thanksgiving feast(s) and that you all had a wonderful long weekend. :)

I know this post should have come a little sooner but things have seriously been crazy, lately.
We had a great Thanksgiving! The food is always so amazing and the time to visit with people not seen very often, is priceless. <3

Right after Thanksgiving was Axel's 1st Birthday!
So on Monday evening we had a party for our amazingly special little guy!

As we were planning his party, I realized why it is such a big deal to us- to make a big deal about.
Not only was our boy turning 1, which is always exciting, regardless of anything else.
  We were celebrating him!
His first year of life was not the easiest one. All of the days spent in the hospital, other days spent running from one doctors appointment to another (sometimes 5 per day). Being weighed something like 4-8 times per week (HAHA, crazy).. The small steps that he has taken to make huge strides!
We were celebrating Our Boy's hard work Making it to ONE and Rocking it on the way there!!

Through it all, Axel has been the most content baby so when he cries, you take notice. He is happy to lay on the floor as he practices rolling from his back to his side, reaching for fun toys to play with. His grasp is improving all of the time, too. Recently he began to hold stuffed animals tight enough to fling them around a little bit! He is still working on holding up his head but he has come SOO far and we know that he will get there!! He has a helmet now, for his head shape, but we haven't quite been able to get him wearing it for long periods before something happens and we have to take it off for awhile. It's tough for him to get use to the extra equipment. When he finally gets use to it, he will be much more successful moving his head around. <3
He's still in therapy and gets all of the help he needs to get stronger.
He has 8 therapists, (plus the Hearing consultant who visits monthly).
We are also VERY blessed that he still has his home nurse, who comes weekly. Devon is the best and I just couldn't imagine anyone else caring for Axel like she does <3
Axel is doing wonderfully and we are looking forward to the appointment mid-December to see if his ears have the correct anatomy to be compatible with Cochlear Implants.
His colostomy closure had to be postponed and we opted to schedule it early January. Then he doesn't have to deal with it during the holidays. Thankfully, it is our decision and not something that HAS to be done by a certain time. =)

All of that to say that I am feeling so Thankful for the amazing progress Axel has shown. He has blessed our family in ways that are very difficult to express. <3

I also thought I would share some birthday fun!

 
I made his highchair décor using 3 fabrics and tying the strips to a fat piece of rope. It definitely made his chair fun!
   Mr. Raspberry man! He started blowing raspberries about 2 weeks ago =D 
  This is post cake.. Daddy put both hands in the cream pie and Axi immediately put them on his head.. haha
 This cake was beyond awesome! Thomas Cake Shop in Troy, Mich. really out-did themselves! Most of the décor is butter cream frosting and eatable, YUM! When she called me with the idea to put a FISH in the middle, I was SOLD! It's tricky to see him but it was soo Cool!


 Chocolate topped rice crispy treats were tricky but they really went perfectly with everything and are a great treat! We will be using that idea again!
                          
 I just had to represent awareness! I made blue ribbon suckers - for Hydrocephalus, and the I love you sign - For his profound hearing loss!
Another Cool trick to reuse and the molds were super cheap!

Tropical fish vanilla chocolates, they came out pretty cool, too. 
 We couldn't stick anything to the walls but fortunately one wall was all windows and we covered them in clingy sea creatures!

                                       Cardboard creature cutouts
          We just love turtles of all kinds and HAD to use this adorable guy!

I definitely wanted to make sure that I posted the pics from his party. I never did remember to post the pics from my baby shower.. That was about 13 months ago, now.. It seems too late. LOL

I thank you all for your time in reading my post.
I have been embroidering things here and there but I often forget to get a picture of the project before giving it away.. I will post what I have remembered, soon.

I hope you all have a very blessed and fin-tastic December!
I can NOT believe it is almost Christmas.. wow...


Take good care and God Bless!

Friday, October 26, 2018

Time is Flying!

Hello! Long time no type ;)
I hope you all are having a great week!

Believe it or not, I have been thinking about my blog a lot and I really want to get back into the flow of things.
I hope in the near future, I will be back to posting regularly and maybe -sometimes- even about sewing! =D

Axel is nearly 10 months old and I don't think life will ever slow down again.. Sometimes, it goes so fast, my head is left spinning for days! lol

I had hoped by this point in time, things would be a little less hectic, but that is not to be for our warrior. I decided that I needed to either get back to blogging or let you all off the hook and close it.
Since I really enjoy my projects and connecting with the wonderful friends that I have made, I want to give it a whirl and see if I make make a solid go of it, again.

These days my posts will have some differences..

The primary difference will be including Axel and his progress with my posts.
He is basically (almost) all I think about and it would be impossible to leave him out.
This seems like the perfect place for pictures!!
I just love spreading Awareness! What better way than to do so as a Team!?
He REALLY is like a BOSS!

These are signs I painted for Axel's bedroom. That Awesome cape is from www.tinysuperheros.com They are an amazing group that makes capes for our super hero's that have battles to fight! I found them on Facebook.
If you know any tiny superhero's, take a look at nominating them for a cape. Every Single Kid gets their cape and the group support (for SOO many things!!)is literally out of this world. <3


I was trying to get a picture of his 6 teeth!! He has 2 on the bottom and 4 on top, all in the last 1.5 months!
 
There are 2 reasons for this..
#1, of course, we have family and friends that want to see what is happening.
#2, Axi has Dandy-Walker malformation, which is a rare condition. There is very little information about it. What there is, is mostly based on the worst case scenarios or possible (usually terrible) affects that "could" come with Dandy-Walker. While I was (and never stop) scouring the internet for information, I am more frustrated than anything, with the lack of it.

Dandy-Walker (or DW, DWV, or DWM) is different for every single person, so I know my "facts" may not be entirely helpful but just simply knowing that your not alone - when seeking this kind of info- can be a total game changer. No matter what, you feel like no one else understands, most especially if they don't have any direct Special Needs knowledge. My Big goal is to just keep on keeping on and if some day, someone runs into a post that helps them, I will be beyond thankful!
(And Please, comment or email me if you would like more information or have any questions! I don't claim to know even half of the information about it, but I will do anything I can to help!)

I know that I have posted information about it in the past, but I feel like reiterating it can never hurt. ;)

It's tricky, you see.. Dandy-Walker is a cyst at the back of the brain (at the 4th ventricle) that fills with cereborospinal fluid (there are varying degrees- they call it Dandy-Walker Spectrum or variant, sometimes). With that, countless other "conditions" can result. The cerebellum (at the brain stem, almost), corpois callosum (this divides the 2 hemispheres of the brain), and other parts of the brain can be minorly or majorly affected- with results also on both ends of the spectrum.
 
In Axel's case, it resulted in; lack of motor skills- additionally- lack of ability to suck (g-tube at 9 days old), Hydrocephalus (shunted at 18 days old), Profound Hearing Loss, Imperforate Anus(colostomy at 3 days old), Vacterl association, a small heart defect, hypo & hypertonia and a couple of other things.
Simply put- The Cerebellum affects motor skills and the corpois collosum affects mental capacity (not quite that cut and dry but you get the idea, I hope- if I have my facts straight. ;)

Dandy-Walker robbed him of parts of his brain (in some cases we won't know the extent until he is in high school!), his hearing- almost completely, his anus- which was finally created back in April ~ View Old Post Here and we just scheduled his surgery to officially close his colostomy, connect his anus and put it into use on November 2, 2018This More Recent Post  has info on what happened following the "take down" surgery in April, to create his anus and fix other areas that were abnormal.

Axi is now in PT, OT (physical and occupational therapy) and feeding therapy 3 times a week (each) to help him gain control over himself. He also has Early On (School system, in Michigan) come to our home twice a week for PT, OT and speech. So that's basically 9 types of therapy, per week- plus our additional feeding therapy that we do at home.

His monthly schedule is a little crazy after we add in the specialist appointments that he needs regularly. In the 12 days that I have off of work per month, we have approx 35 appointments. Thank God I am able to be so flexible at work- I have the best boss ever (for almost 17 years now)!! Otherwise, all of Axel's appointments would be impossible.

In the month of October we go and see his cardiologist, Nephrologist, General surgeon (about upcoming surgery), neurosurgeon, Gastroenterologist and cochlear team.
We are also working on getting him a head shape helmet and hope to have that asap, as he's a little on the older side of it, now. {It's very frustrating to feel like the doctors think we are "too busy" and don't want to make things more so, for us, so they let things go with out telling us about them. Then, like with the helmet, it's too late to get all of the results that Axi needs.. That leaves our son without things that he needs to be able to overcome all of his obstacles. So we stay on top of everything for him and that can be a challenge!! Especially since we don't have any medical training, so we don't know all of the things that they do..}          AnyWays!!
 He was just fitted for some special equipment, a stander, stroller and feeding/therapy seat. He will also need to be evaluated to see if he will need any kind of braces for his legs or feet, to make sure he is putting his feet down properly.

We have known since I was pregnant that he has rib and spinal abnormalities/anomalies.- After getting some xrays done recently, we now have a better idea of what is going on. *He has 4 vertebrae that are fused, 2 that are butterflied and from nearly the top - to nearly the bottom, he has a 19 degree "Cobb angle". So we now know that he has scoliosis. We will be watching that in the years to come to see how greatly it will impact his progress. Since he isn't able to hold his head up yet, we don't know how much the weight of it will impact his spine. His head is still in the top 97% for size, and that also means it's like a little bowling ball on his little neck. 

One last note, in December we will finally go to get the last tests to see if Axel is a candidate for the Cochlear implants. I feel so blessed that we have finally noticed a bit of reaction to a couple of very loud sounds and pray constantly that his beautiful little ears will have the necessary pathways that the implants need. 

I'm going to really try to keep updating my blog on Axel. Again, it comes down to being that parent searching for some kind of information. While the cases may be completely different, it can still be a great comfort. I wish I had been able to find something NOT terrible, when I needed it the most.

By this post, it seems like I dwell a lot on what he is going through..
I guess at times that is true. Sometimes it will hit me like a brick and I need a few minutes and my positive thoughts to come out on the other side. Mostly though, he just blows us away and we spend our time doing anything we can for him, very happily!
He is just amazing! He is so content and not a whole lot really bothers him, but when it does, he definitely lets us know!
The most awesome thing is that he is so interested in the world around him!
Watching him take everything in is so much fun and he is always hungry for more <3
Before I had him we didn't know what the case would be. So many prayers have been answered in the best possible way- Here's to a lot more of that!!

I have a whole BOOK of projects that I really need to get back into!
Not to mention that...
I am ALREADY planning our miracles 1st Birthday! =O
While I won't be creating all of the décor as I have usually done, I am super excited to make some fabulous pieces for our Under The Sea theme.
Think Seaweed tablecloths and bubble clusters <3


This definitely got longer than I expected, sorry about that..
Our guy has so much going on and believe it or not, I left things out, too!
 

I am always open to questions or comments- don't be shy ;)

Please keep our miracle in your happy thoughts and prayers <3
 
 
God Bless you all and we hope you have a fabulous Halloween!!