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Little Super Hero Axel Oliver

$6,900 of $5,000 goal

Raised by 178 people in 9 months
Created December 13, 2017
My sister, Amy and her husband Greg had a beautiful baby boy on November 26th, 2017. Amy has 2 other sons that were excited to become big brothers too.
Axel is a special needs baby and has already had surgery at 3 days old ( colostomy bag), and another at 10 days old( GI Tube). Axel has Dandy walker and hydrocephalus among other disabilities, I will talk about in this story. I'm wanting to raise money to help my sister and husband travel back and forth to hospital and for expenses after Axel comes home. He will need her care 24-7, as he will have weekly doctor appointments for a long time.
Amy had tests while pregnant with Axel and it showed he didn't develop an anus, it also showed large amounts of fluid on his brain and a cyst on his brain stem causing him to have delayed motor skills even at days old. It was found to be Dandy Walker and Amy was going to have a c-section to deliver Axel.
When first delivered Axel couldn't eat, due to not having a way to remove waste. He was 3 days old and under went his first surgery to have a colostomy bag placed. They fed him through a small tube that went into his belly. Axel was unable to take a bottle or suck a pacifier due to a small over bite he has and his lower jaw being small and tight. It makes it hard for him to open his mouth very much. At the time this was discovered doctors decided to do a permanent feeding tube in his stomach (GI tube). Axel has another surgery for a shunt to be placed near the dandy walker to relieve the fluids surrounding his brain. He has showed signs of cerebral palsy on one side of his body and they feel it may be from the under developed brain stem. Axel is such a sweet boy and I hope this helps relieve some stress that is burdening my sister and her family.
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Hi! Mom here!
Wow.. Not only have you all met our goal but exceeded it!
We are stunned without words to express our gratitude!
What can be said!? A thank you feels far less than adequate..
We feel blessed beyond measure at the generosity of everyone!
Thank you so much, Preeti, for taking Axel's cause upon your own shoulders and taking your precious time advocating for us! You don't even know us and yet felt more then just compelled, to help. Also, thank you to the quilting community!! I had no idea when I became involved with quilting and blogging about it, the community was so much like family. Always so encouraging, enlightening and inspiring!
We couldn't have done it without you.
Really, Thank You to every person that has donated, prayed or even just thought of our little fighter!

I have an update to share too!

Axi is 4 months old and weighs 13.1 lbs! 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, 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!

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!!
Tuesday he had a Loop-o-gram and next Thursday we go see his general surgeon to get Axel's first of 2 surgeries to create then connect his anus. Last time we seen him he 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!
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. :)

God Bless you all!!
The look of many meanings
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Hello! Mom here =)

Wow!! I'm sorry it's been so long since I posted an update! Time really has a way of evaporating..

Axel will be 4 months old on March 26th! He weighs 12.8 lbs. now!
It is so amazing to me that he has been in our lives for nearly 4 months and we already can't imagine life without him! ♡

He is still a fantastic sleeper! He sleeps through the night and we get him up most every morning. He gets 1 oz per hour overnight, for 8 hours. So he has no need to fret or fuss and mostly looks around and plays with his hands. ♡

A few weeks ago, his hands found his mouth and quickly after, his thumb! =D He has become a pro at popping them into his mouth! The hand that gets there 2nd has a job, as well.. To rub, push, pull and generally work over the hand that got there first! I wonder if they are fighting over his mouth..!? Lol

Axi also started turning his head to the right, all on his own! That is so wonderful because his neck muscles could have become tight on the left side causing pain if he turned to the right. That's one battle we won't need to deal with!

He's still practicing with his bottle and paci. He's taken as much as 13ish mls, but we are happy to see him take 3-4 ml's regularly, *when he's in the mood. Haha

This was a BIG week for us all!
2 weeks ago his hearing specialist at U of M started making his ear molds and those finally came in!
He got fitted, being a good boy, as always and did not make a fuss. He even came home with loaner hearing aids! (..of course, what is an appointment without his ostomy bag spreading it's share of joy.. gotta love the carseat.. lol)
He is a champ wearing the aids but there is all sorts of feedback from his movements. Fortunately, the aids don't keep playing the awful sounds. It actually stops at a certain level recognizing it as feedback. So that is pretty cool. We just have to convince ourselves that he can't hear it..
Axi hasn't responded much at all but we are still very hopeful and will put as much sound in there as we can. We have to go thru all of the red tape to prove the cochlear implant is what he needs.

I think that about covers It!
...maybe..? Lol
We thank you all for your support. ♡

Happy St. Patrick's Day!
God Bless
Love, Axel and family
Xox
First times wearing his hearing aids!
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Wow!! Axel is 2 months old and weighed 10.4 last week!
He is getting so big
He enjoys his swing and 4moms chair at slow speeds but his DockATot is still number 1.

For the first time he created suction on his bottle and sucked a couple of times in the 10 minutes we were playing! He's also working hard to find his mouth with his fingers. Once in a while they sneak in and he likes to explore them

His hearing test last week went well. Axi slept nearly the whole time and fussed very little in the 2.5 hour appointment. That helped everything go smoothly. We now know that he has profound hearing loss in his inner ear. The nerve is sending signals to the brain stem, thankfully, so hearing aids and even implants could help in the future.
We go to U of M next month to start everything rolling and hopefully help our baby's ears.

He continues to amaze us every day ♡
Thank you all for every prayer you have said for our perfect baby boy.

God Bless
Lightening eyes
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First of all, we want to thank everyone for keeping up on Axel's progress and for donating for us. It means more then you could possibly know to have such wonderful and supportive friends and family.
I don't know what we would do without you. xoxox

Now, on to that update!

Wow, Axel is going to be 2 months old in a couple of days! It is just amazing- It seems like he has been here forever (in the BEST way!!), I already have a hard time thinking of what life was like before he came.

He is still a wonderful sleeper and spends most of his days chilling in his Dock-A-Tot.. He has loved that since his first day home, it has been a life saver!

On Monday he weighed 9lbs and 11 oz! He still gets 26 calorie formula (standard is 20 calorie), so that is really helping him pack on the pounds!
When he is awake he doesn't stop moving. His arms are all over but his favorite is still putting his fist straight up in the air or having his hands by his face, playing with his adorable cheeks! His legs look like he is practicing running and all he needs is to figure out how to put his feet on the floor! I swear, last night he was ready to take off! lol
He is getting familiar with his boppy pillow for tummy time and also to help him with turning his head. His shunt is on the right side of his head and that acts like a sort of kickstand, making it hard for him to turn it completely or want to lay on that side. He loves laying on a pillow or really soft surface, like our bed, when he can turn his head and look around a bit.

He is already working to strengthen his neck muscles, too! He can pick up and turn his head and he can also push himself back (like away from your chest) and sometimes he will just sit like that and stare at us.
Can I just tell you how gone we are over him?! ...And I am pretty sure he knows it, too! lol

His neurosurgeon appointment went great!
He said that Axi's soft spots were a neurosurgeons dream! THAT is exactly what we were praying to hear! He also told us to see a neurologist and they can help keep up with his milestones and direct us to any additional help he might need. So we will be making that appointment soon.

He is still working to learn how to suck on a binky and bottle.
He doesn't cry when we work with him, usually, so that is great! It makes everything so much better if he is accepting of the practice. If he's upset he is more likely to not even want to try and we want to make this as painless as possible, hopefully some time soon it will even be fun for him and not so much work.
He has officially sucked his binky into his mouth a couple of times in the past couple of weeks and that is excellent! One of these days it will just *click* and he'll be wondering why someone didn't just TELL him it was so easy! =D

I've worked 2 days this week and I guess it isn't the awfulness that I expected. It doesn't make me warm and fuzzy, don't get me wrong, lol, but knowing that I get to spend every other day with him during the week has been my focal point and it is helping immensely. Also knowing that his loving daddy is home to care for him, makes my life a lot less stressful.

I think that is about all that is going on for now!
I'm sure there is more, there always is. lol
He is literally an original -with all that he has happening, there just couldn't be anyone like him <3

We hope you all have an excellent and blessed weekend!

Please continue to pray for our Axel-Oli!

xoxox
Enjoying a bit of time on his right side
I revolve around my world
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$6,900 of $5,000 goal

Raised by 178 people in 9 months
Created December 13, 2017
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