Friday, November 3, 2017

catching up on life

We've been kind of MIA on social media lately. Things are starting to slow down a smidge for us and I'm hoping to stay home snuggled up with my boys more often!

The big boys are doing pretty well in school. Owen is starting to read like a champ, which means no more spelling things out for Derek and I. He can add and subtract like it's going out of style & can tell you more about Christopher Columbus than I know. Jake is learning sight words & reading some short stories. He's also learning how to take numbers apart (like nine can be 4+5, 8+1, and so on).

Owen's fall ball had their end of the season party last weekend. I think my boys have a new love for bowling. Never a dull moment with the baseball fam❤
Jake can't wait to start in the spring!

Maks got some new gadgets-- his SMO orthotics, or as Derek calls him C-3PO (yes, that star wars robot guy) They have made such a huge difference! He is tolerating standing for longer periods and is even starting to take his own steps, when we help him weight shift.
In OT he is working on releasing objects, instead of flinging them, and strengthening those hand muscles. Speech is the one,for me, that is hard to see progress. It has taught me to have even more patience than I ever knew I had. We do a lot of repetition, I talk a lot to myself (really him) during the day and we have been working on sign language. I wish I would of took sign language in school, it really is so neat!There's more about Maks, medical wise, but I'll save that for another post.

Charlie, our pup, has been hittin' the doggy spa every six weeks like the spoiled baby he is. This last time they gave him a haircut like a poodle, I can't help but laugh every time I look at him!

Three weeks ago I snuck a new member into our family. I finally have another girl in the house--this is Milo and she has Owen wrapped around her paw. It's pretty darn cute.

Derek and I were able to sneak away for a few hours so he could finally have his birthday present! I'm pretty sure this was my best idea yet and I won't be able to top it. We had a little mix up two nights before, but it ended up working out in our favor + driving a better car.

We've got a fun filled schedule these next couple of days--Happy weekend!!

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,