Friday, June 30, 2017

MRI results & such

I can't believe it has already been two weeks since our little guys MRI!

He wasn't scheduled to go under until 3:00, so we knew we had a long day ahead of us.
Derek and I got up around 6:00 to try and feed Maks his last meal for several hours. It didn't go over well. Maks usually wakes up at 7:30 and likes his morning routine-- gets changed, eats a squeeze pouch, plays while breakfast is made & then slams on six pancakes. Homeboy was not feeling this six AM, shove food in my face thing. So needless to say, he didn't really eat much & I was starting to panic for our two hour car ride later on.

Derek hopped in the shower, I managed to get Maks to drink some of his "milk" (like a pediasure) and then it was cut off time.
We went about our normal morning routines, got the big boys off to camp, had a meeting with some Maks people (another post for another time) then loaded up and were on our way.
I could not of asked for a better car ride there. We only stopped once, for my dad's fathers day gift, and Maks was as calm as can be. We dropped off Owen and Jake at my parents, hung out for a little bit, and made it to Children's hospital around 1:45.

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It was comforting to have the same nurse as we did with Owen. She recognized us right away & let Maks go pick out a toy. We were about eight hours out from any food and only starting to get hangry--seriously he was such a trooper!
Luckily they were able to take him back earlier than scheduled & Derek and I were able to finally get something to eat. We didn't want to chance it eating in front of him. 

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About 30 minutes later we were back waiting  in his recovery room. I could hear this familiar cry all the way down the hall, yup that's Maks. Finally we got our little man back in our arms and calmed down enough to pull out his IV. He took a few sips of juice and was free to go.
The rest of the day consisted of eating everything in sight! Oh and that dreaded two hour car ride home because you know, baseball.

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On to the results...
We don't have all of them yet, but what we were told is it's nothing concerning. He has two white spots on his brain stem and this could be a couple different things. They are waiting until our follow up visit in August to explain everything in detail.
Are we scared, no.
Nervous, just because of their location.

I'm not sure if I've ever said on here, but he was diagnosed with spasticity and global developmental delay. Quick Google searches to explain those:

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We are very hopeful for Maks' future. His progress amazes us everyday & it's just going to go up from here!
Happy weekend,
xoxo 

Friday, June 23, 2017

Summer break so far

 I need to play catch up!

Baseball season is officially over. Owen's team played so well at their tournament. They kept up the whole game, but ended up losing by 3 points. So proud of all our little guys❤ We usually just play spring ball, but this year we are putting together a fall ball team. Derek had a meeting with the other head coach last night and practices should be starting come August.

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Dance has ended too. Jake had his recital the first weekend of June--it was pretty adorable!
My favorite was their ballet which was to the Beauty and the Beast song, Tale as Old as Time.
Jake & "his girls"

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Maks had a birthday! He turned two on June 9th. I made him some cupcakes & we celebrated out on our back deck. I knew his presents would be a hit because this boy loves the water!

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Owen finally got his hearing aids! It took us a couple weeks to get adjusted to having them & remembering to put them in everyday, but now everything is going well. We were initially scared of him losing them/falling out when we arent around, but they passed our test--jumping jacks, running, trampoline, swinging, wresting, etc. We also have this special clip thingy to put on them & him just in case they do decide come off. I'm sure I'll be making him use that more frequently once school starts because right now he is our most expensive kid!

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The first two weeks of June, the big boys went to day camp in our little village. They had the best time & even got to mark a few things off their summer bucket list.
Basketball camp is next!

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Maks is still in PT, OT, and speech. He is making us so proud with his hard work.
He can now:
•feed himself finger foods without help
•90% of the time use a fork the right way on his own (we have to stab the pieces for him)
•is more daring in moving out of 4 point (AKA crawling position--not crawling yet though)
•pronouncing mama, dada, lala, gaga, and bahbah 

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Now that our days have freed up a little, we are looking forward to grilling out, crossing things off our bucket list & roasting mallows over the fire.

But first, its tattoo time with my mom in-law!
xoxo

Thursday, April 27, 2017

Neurology update

I didn't want to leave all those that have prayed, sent well wishes & love to Maks hanging...so here is what we know now.

Last week we took him to children's for a three hour evaluation, which turned into four. He was with PT, OT, speech, psychology and neurology. Everyone did their own thing-- stretching, playing, talking, reading books and snuggling our little guy. Then they came and told us what they saw and how he did and where he's at age wise.
We knew he wasn't on the same level as a 22 month old but it stung a little to hear that Maks was equivalent to an eight month old. He has A LOT of catching up to do and that means increasing PT visits and starting OT and speech.

There is no official diagnosis of anything, yet. If at all (keeping our fingers crossed)
We have a MRI scheduled for June and a follow up visit in July. He had quite a bit of blood work done while we were there too. All of that was normal, just low on iron so we started to give him some vitamins until we can find an iron rich food he likes. Welcome to any ideas on that ;) 

We start speech and OT next week, along with our usual PT..and have to squeeze another PT in there somewhere. Then we just keep doing what we are doing until mid June. 

I posted this on my Facebook a few days ago...on our way home Florida Georgia Line's song came on and it really hit me right in the heart (picture big ugly crying crocodile tears, that was me) No matter what the outcome is for our little Maks, we love our rainbow baby just the way he is.


you better believe my love is
never gonna run dry,
never gonna come up empty
now until the day I die, unconditionally
you know I'm always gonna be here for ya
no one's ever gonna love you more than
God, your daddy, and me

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