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 d├ęcor 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!!