It’s not a Chromosome 18 thing…

Ryan had a horrible episode of seizures on Sept 16. It seems a couple weeks before his birthday, he likes to freak us out just a little – and we end up in the hospital. It’s not fun. I don’t enjoy it. Hoping next year, we can be home and in our own beds for all of September! (All year would work better…)

The week we spent in the hospital this year, however, I learned a LOT. Let’s start with the things we already knew.

Surgery Photo AlbumThe Chiari – The BIG surgery he had 2 weeks before his 2nd birthday? Yeah. It’s not a Chromosome 18 thing. In fact, when I spoke with the neurologist at the Chromosome 18 conference – who works with Chromosome 18 kiddos, he said it was the first time he has heard of any Ch18 kiddo to have a Chiari. GREAT! (not really…)

Just another thing Ryan has that most – if any – Ch18 kids don’t have.

MTS

This looks almost identical to Ryan’s MRI

MTS – Mesial Temperal Sclerosis – scaring on the left side of Ryan’s left brain. They don’t know what came first – the scaring or the seizures. They will never know. This is NOT a Chromosome 18 thing.

The only way to totally get rid of MTS is surgery. The seizures happen on the left side of the brain. The way the neurologist explained it to me – it’s like a little spark in a wall of your house that turns into a fire. The spark (a tiny part in Ryan’s brain) trickles and spreads to other parts of the house (the rest of the brain). Depending on how long the seizure (or fire…whatever – I’m trying to keep up here!) lasts, is how long it has to spread throughout the rest of the house (or brain). Get it?

So with an EEG – the electroids are on the outside of the patient’s head. The only way we can find out where exactly in the brain the seizures are coming from is to put those electroids directly on parts of the actual brain – under the skull. If there is seizure activity shown on an EEG on the left side of the left brain, how does one know if it’s from the front, middle or back of that left brain? I’ll address this in a later post…

Overall – all in all – what am I trying to say here? MTS: It’s just another thing Ryan has in addition to Chromosome 18 and the Chiari.

Regardless of whats going on in Ryan’s brain, to his body and brain when he seizes – I can’t help but feel so blessed.

IMG_20130929_141529_357[1]

This is a little boy, that with all of his ups and downs, takes two steps forward and 10 steps back – regardless of what he’s been through in his life, and even if he is only 5 years old and has been through more medical mysteries than my 34 year old self – is the happiest, funniest, most loving little boy I have ever come in contact with and with that, that makes me SO blessed! And my girl – who is a preteen that has been right by my side, going through all of the questions and answers, the emotional roller coasters of unknowns and worries in her own almost 12-year old way – is the silliest, strongest, loving daughter I ever expected she would become at such an early age.

SAMSUNG

The boy and pre-teen girl that I have been blessed with in my life – who both can wake up as lions in the morning, go to sleep as sleepy lazy puppies with or without stickers and marker on their faces. (It’s happened!) They keep me in constant check of what really matters in life. We can all have bad days but by the end of it all, we’re laughing and dancing and giggling and having a happy loving wonderful time…because that’s who we are and that’s who we will always be.

It’s not about the seizures, or drama with friends, or what we have, or Chromosome 18, or attitudes we gave our family or friends, or the broke down car in the driveway, or any of that silly icky stuff. It’s about what we have with each other and I wouldn’t trade it for the world.

My crazy kids.

If it’s a chromosome 18 thing or a 6th grade thing – I LOVE what I have and I appreciate YOU for wanting to be apart of it too.

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6 Comments

  1. Jo

    Wow, what an inspiring post! My heart aches for all that Ryan and your family have to go through and I am in awe of the amazing way in which you express your gratitude and love for the life you are living. You are an inspiration!

    • Thank you so much Jo! I’m so blessed to have met a wonderful group of women to come behind us and pray for all we need. Thank you!

  2. auntie abby

    yet again, aunt abby is tearful in class!!

    i’m here for you when you need me, bina!! love you guys!!!
    xoxoxox

    • Love you Ab. And stop crying!! 🙂 XOXO!

  3. ¸¸.·´¯`» A

    I love you guys! Miles away and wish there was more that I could do than just pray!

    • Praying is enough from far away, Ang. We love and miss you guys so much! Come visit! 🙂

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