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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!!
 
 
 
 

Monday, June 18, 2018

Awareness Walk in Michigan & Axi update! RePost

I'm sorry! I don't know how some of my posts reverted back to drafts. :(

Hello, happy summer!
I'm still short on fun sewing/embroidering projects, sadly.
If you had a baby at home that could melt your heart with a look or even a tiny sigh, you would have a hard time, too! =D




Mostly, I wanted to fill you all in about a couple of things..

Firstly, Axel continues to be amazing! He is almost 7 months old (I have NO idea how that happened!!) and he is ALMOST back to 15lbs (he lost almost 2lbs when he was in the hospital). He's learning to clap and it is SO cute!! I started teaching him by letting him hold my hands while I clap, clapping his hands and also, he LOVES when we clap his feet =D -I hold his hands to his ankles and clap them, it's really funny! He is also smiling a lot more now and we can even get a laugh out of him once in a while! We continue to talk with him and let him feel our vibrations. We have some very interesting conversations with him! He is so vocal these days, you would never even know that he can't hear!
He's also discovered how awesome the iPad and YouTube are! There are some GREAT contrast videos for babies! We also thought he might enjoy some classic Disney, as it turns out, he just LOVES Donald Duck. haha- who doesn't!?

I'm going to get back to the update on Axel in a moment, first I wanted to mention the Hydrocephalus WALK August 26, 2018 in Novi, Michigan (click this link to view).
Our team is AxelOliGests (if you search for Axel on their website, it brings him right up<3). We are really excited to be able to support our extraordinary boy and everyone else whom suffers from this awful condition! 
So far, we have met about 28% of our goal of $1,500 and I am working hard to get that to 100%! I am talking to anyone that I can about it! We would love to have a BIG team there, wearing AxelOliGests shirts and supporting our boy! Currently, we have about 15 people and that isn't too shabby!! I've been calling businesses and really trying to appeal to them in hopes of their support. That is slow going but I'm not giving up! If you want to WALK with us, leave me a comment or go to contact me, at the top, and drop me an email! If your moved by Axel and would like to show your support, please tell people about our cause!
Send them the link, give them my blog address, email address, social media info or anything else you can think of! lol 

Okay, back to the update!!
He had an unexpected 5th surgery, due to some big complications with the previous surgery, anorectalplasty.. (Basically, I call it his anus surgery, it's a lot easier that way. ;)
My husband and I are now praying fervently that there will not be any lasting consequences for Axel.
In April, Axel was in the hospital for a few days for his anus surgery, then he came home for almost 2 weeks.
However.. He wasn't able to urinate without help from a catheter. 
Due to the in depth nature of the surgery that had been done; leaving the catheter in place was only agitating the urethra. Axel's Urologist then decided that a Vesicostomy was necessary, so his urinary tract could get complete rest. My poor babys' belly now has a G-Tube, colostomy and a vesicostomy.. Unfortunately, he will have the Vesi for at least a year maybe more. -The last time we looked, his bladder wasn't contracting.
Apparently, there is a distinct possibility that the in depth surgery caused a Neurogenic bladder. (another new term for us...) Neurogenic bladder can come on suddenly. Great.. With all that Axi has going on, his urologist has been on the lookout for anything "off"..
The operating report (lengthy though it definitely is) states that the surgeon "nipped his urethra" and "split his coccyx"..
#1.. Our boy doesn't have a coccyx, he has spinal abnormalities and in his case, that means the bottom portion of he spinal cord isn't there and he has at least 2 sets of fused vertebrae.. Kind of hard to split some thing that isn't there..
So there is a very high likelihood that the surgeon splitting a vertebrae (that was most definitely fused to another) caused his neurogenic bladder.
& #2.. "nipping" ANYthing would obviously need to heel, but nipping something so small and delicate could/would be catastrophic.
The thing is we weren't told of those things until after everything was hitting the fan. Its really hard to trust someone with your babys' life ,if they pick and choose what they tell you. Who are they to decide what I need to know. We are talking about our baby here. not a car, for crimminy sake!! Odds are, we would have understood the complexities of our boy and we would have dealt with it a LOT better if everyone had stood up and told us what the heck happened!!

What ever happened to accountability!???

Anyways...
THAT is when all hell broke lose..
Following the Vesicostomy surgery (which was relatively "easy" and could have been outpatient for someone less complicated, it was still surgery requiring anesthesia), everything went haywire..
The first week was spent with him not being able to hold food down. He wasn't having any bowel movements, at all. NONE.. That is not a good place to be!! Basically, his GI system shut down (having 2 surgeries in the same area within a couple of weeks of each other, was just too much for his sweet little body) and anything that was going into his mouth came right back out. Even the smallest amount. It was really scary!
After that first week, his GI tract started to wake up enough, with some medications' assistance, to start moving stuff around, thankfully!
We then gradually started to build up his feedings again.
The second week was a lot better! He was back to his happy self and had some energy!
Hospital stays are not fun for anyone, but especially for little Axi..
He was vomiting and that means they ALWAYS look for problems (clogs or infection) with his shunt (which is great, and scary! Shunt problems almost always mean brain surgery is necessary and usually, very quickly).
Add the other things he has going on and the poor guy had over a dozen tests. Xray's, ultrasound's, dye studies for his GI and Shunt studies.
In fact, the only thing they DIDN'T look at... His new anus.
Fast-forward a bit and Axi had a bit of a virus and started vomiting again. Dehydration is a very big deal, obviously, and try though we did, he couldn't keep enough down for us to feel like he was safe. Back to the hospital we went, 13 days after his big bad hospital stay.. o boy..
Again.. all of the tests.. Thankfully, they all looked good and he just needed a bit of time and care (and IV fluids!!) to get back to rights again.
Axi had a MUCH easier time getting past his issues that time, thankfully, and he went home after about 4 days.
BUT*** At our surgeon's recheck appointment for his anus, we find out that the anal dilator wouldn't go in as far as it should....
So apparently, with Axi being in and out of the hospital, he missed a check up and even though he spent 3 weeks out of a month in their hospital, no one thought to see what was happening with his rear end!!

As mom.. I feel like it is completely my fault. I should have thought to ask, I should have thought to do this and that and everything in between.
 I can't help berating myself. Unfortunately, guilt doesn't rest and I have this crazy amount of it festering, deep in my stomach. Screaming out for my boy..

When I look at it from a different angle I think WHY the hell weren't we told to begin with, that this could even be a possibility!?

How is it that our home nurse has NEVER seen this happen!?
She has never seen them need to repeat anorectalplasty.. Why is it that my sweetness should have this happen.. :(

So what it comes down to is that our boy will go in this week to get a scope done. If that doesn't go well they will have no choice but to repeat the surgery, but not until the Vesicostomy is ready to be closed up.
We were told he would lose his colostomy right around now.. With the turn of events, he might 2 or 3 years old.. (only slightly different then their 3-4 month estimate, huh..)
While we aren't in love with changing poopy bags and replacing his bag because it failed and got doody all over his clothes, we ARE completely and utterly over the moon in love with our boy, no doubt!
More than anything, we are beyond incensed that our miracle baby must go through these things!
It wasn't bad enough before!? When he had the battles he was born to face.. We have to add errors and omissions to his surgeries and stack up a whole list of new ones for him to suffer through.
That he should have NEVER needed..
At this moment, he is living through someones mistakes.
Mistakes that should have never happened.
Mistakes that could (and almost certainly will) change his (and ours and our familys') life forever.
Mistakes that NO ONE will ever care, have to watch, go through and comfort him through, but us.
There was at least a chance, before, that he could be free of incontinence issues.. I'm not calling it quits on my hopes and prayers but once again, my perspective is changing.

At the end of the day. No matter what is going through my mind, I look at my sweet, happy, energetic little man and just know that I/ WE will do EVERYTHING that I can to give him what he deserves. I don't know how I will give him the moon and the stars, but I will do my damnedest.

I apologize for the super long post.
I hadn't planned to go into quite that much detail but as I was typing, I decided, why not?! ...and also, my frustration got the better of me and I think venting to you all, helps. So, in that case, Sorry & Thank you!! xoxox


Have a fabulous week and God Bless <3

Monday, April 30, 2018

Baby Axel Oli & Some New Projects! - RePost

Sorry, again, I am not sure how this post reverted to draft. RePosting.

Hello all :)

I'm sorry! It has been far too long and I wanted to post an update on baby Axel!
I also have a couple of things to show you!
First, of course, comes Axel <3

Axi weighs over 15lbs. now! He is in the 5th percentile for length and weight but was in the 97th percentile for head circumference. That actually kind of makes me giggle.. It doesn't look like his head is large but it definitely is. He's just always looked so perfect, it isn't completely obvious to us. It's gotten a bit smaller since his shunt was placed just before 1 month old, from the 97th percentile to the 93rd!
Speaking of his head. He has been lifting it a lot lately! He is such a busy boy, always needing to see whose around and what's happening. He can't hear and it's quite amazing that he can feel when there are people around that he can't see. He then lifts his head a bit and looks over. He gets upset if he can't quite get there himself and we turn him around. It is so awe-some to watch our little miracle discover the world around him. His eyes are so bright and you can see the wheels turning as he's thinking <3 He very interested in who is where, while we are at appointments. I'm assuming that he wants to see who is going to touch him and when. I don't blame him a bit! They are always picking on the baby, you know!?
He really does take it like a champ though. <3
His hands are never far from his mouth. He soothes himself chewing on them and rubbing the front and back of his own head. He absolutely loves his light up soother and ceiling projector on his mobile.
He's becoming so much more aware of everything around him! We have been playing kissy games and he is starting to SMILE =D he also puckers up his lips and we can't get over the cuteness! 


He loves playing with chunky toys and things that he can get an easy grasp of. Everything that goes into his hand, he then attempts to shove into his mouth. It works some of the time. lol.. He's getting better and better at it every day <3

 Medically speaking, he is doing really well!
His cardiologist has told us that his VSD is getting smaller and intervention probably won't be necessary, yay!!! His urologist said the same about a small issue with Axel's privates. Those are 2 places we are very happy the doctors won't have to mess with!!
 He went for the 1st of 2 surgeries for his anus on 4/16 and has been recovering nicely. Thank God! However, his bladder is still "sleeping" and he has had the catheter since then. We hope that during tomorrow's test he will be good to get that taken out! We were in the ER on Friday though, because his catheter came out. I must say, we seen very relieved smiles from Mr. Baby Man, immediately after it was replaced. He had to GO, sooo bad. :( Before surgery his general surgeon told us Axel has the perfect butt! Sounds like an odd compliment, right!? Haha
Of course, the surgeon meant it in terms of anatomy and butt hole placement. So it really is fantastic news!

Here's another odd statement for you.. 
I NEVER thought I could think a butt-hole was perfect, but there you have it, Axi's is =D
We will be doing therapy to get his new anus ready to be connected (and make it active!!) in the next 2-3 months. THAT part doesn't sound like a lot of laughs (and our poor baby, having to go through it..) but we will do whatever we need to for our miracle.<3
 He still sees his nurse every week and now adds PT and speech to the OT.
There is always so much happening I could go on and on. I think I covered the main things, though. :)


On a bit of a different note.. Our family is participating in the Hydrocephalus Association WALK in Detroit in August!
I know I haven't been doing many things "post worthy" but I am on a new BIG kick to raise awareness for Dandy-Walker Malformation and Hydrocephalus!
I will post a couple of pictures of what I HAVE been working on, even if I have no time to post these days! (I HOPE to change that SOON!!!)
 This is the very first shirt that I made! I HAD to get it done so he could wear it home from the hospital on the 19th. It has a few issues but all and all, it's not terrible for a first time! (have you EVER tried to fit a 6month t shirt into a 5x7 hoop!? It takes some muscle! lol)

The lion with the phrase "How big is your Brave" was designed by a good friend of mine whose 2 year old also has Dandy-Walker. I feel so blessed that she shared it with me and let me create it for embroidery!!

As you can see, I have really gotten into machine embroidery!
I spend every free moment that I can designing things and I've made a couple, so far!
In my mission to raise awareness, it seems like this is the PERFECT way to really get it out there! and we wear it Proudly!!

My Etsy shop pretty much failed miserably..haha.. but now I am convinced that I have found the perfect thing to get it going again, and what better cause is there!? So I will be working hard to get that moving!

I want to sincerely thank everyone for your prayers for us and Axel. I can't tell you how much it means to us to have such wonderful people adding to Axel's prayer chain.

I hope you all have a fantastic week!

Take good care and God Bless!

#DandyWalkerWarrior #HydrocephalusWarrior #HydroWarrior #AxelOliverHydroWarrior #HydroHero #HydroAwareness #DandyWalkerAwareness