Thursday, August 17, 2017

Maks' diagnosis

My posts are few & far between during this season of life. I've been soaking up my family time and living more in the moment + binge watching Gilmore Girls every night before bed.

To be honest, I have sat down and tried to write this several times. Part of me wants to explain everything in detail & the other half to just keep it short and sweet.

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Maks has always had some muscle tone problems in his legs. See how his legs and feet are tightened up? He's like that 90% of the time. We started physical therapy almost a year ago to help with that and his immobility.
One thing lead to another and we started seeing his neurologist at Children's hospital. The evaluations were done, an MRI was scheduled & done and then we had a month and a half wait to see these results in more detail. It's aggravating being told your son has spots on his brain stem, but not to be worried.The six week wait was finally up on Tuesday. We showed up, he got evaluated again and the results were shown to us. 
Maks has cerebral palsy. The diagnosis we both, several months ago, assumed he had.
As special needs parents it's something you long for, finally a name for your child's special trait. A name that can help guide us in the right direction for Maks' future.

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Maks also had an EEG done while we were there. For being two, he did so well with this test. 
One more test to go, for now, on Monday. Derek, Maks and I will all be getting a genetics test done with blood work.
The goal is to figure out how/why he has cerebral palsy.

I think I'm going to leave it at that for the moment. Life is going to go on & Maks is going to keep crushing his goals.
You are so loved little boy❤

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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,

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!