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