Friday, September 28, 2012

Hello, 9th Floor

We're baaaaaaaaack.

And contrary to what you might think, we're really glad to be here-- the 9th Floor, that is.

To be clear, we are not glad that MC had increased seizures prompting his exit from the rehab hospital; rather, we are glad that he has a team of 19 doctors-- I'm not kidding, I counted during rounds this morning-- working to sort him out.

I'm going to be honest. The timing seems a bit suspicious. Princess hosted a Sip and See this weekend to celebrate their homecoming
Yai Yai, Princess, Mommy & Nana
went to visit MC afterwards to tell him all about the bash


and after 3 days of improvement, he suddenly starts regressing. Perhaps we should be adding attentionitis to his ever growing list of diagnoses?

Anyways, with a little advocating on Mommy's part (I may have quit my job, but rest assured, I retained my J.D.), we managed to get MC transferred from rehab back to the hospital.

MC decided that after 8 rides in 3 different countries, he's most definitely qualified to ride alone.  I agreed.

Nevertheless, whether I'm riding up front, by his side, or trailing behind, knowing my little baby is inside that big scary truck with all those flashing lights and sirens-- it gets me every time.


To stop the inevitable tears, I recall my Funny Indian Ambulance Story. When the Canadian med-evac team arrived at the hospital in India to take us to the airport, the team had been in India for less than 12 hours. One of the team members suggested that since we had plenty of time to get to the airport, we leave the lights and sirens off, you know, to prevent cars from unnecessarily scrambling to get out of our way.

Needless to say, the driver and I had a good laugh. For those of those of you who have not been to India, lights (or dippers) and horns, are used by everyone, at all times, at a rate that puts New York City to shame.

To prove my point, I present to you a video of my Child of India's reaction when the fire alarm went off this morning. (Not to worry, just too much steam from the shower.)


Anyways, MC has been at the hospital 3 days now, and he is currently undergoing his 1st 24 hour video EEG/4th EEG ever. I've been calling him Neuro Smurf for the day.

His nurse said that the name is totally appropriate, so long as he doesn't take it as a cue to turn blue. I know, I know, you're probably gasping in horror at our tasteless hospital humor. But the reality is that it's an ever growing nightmare and sometimes it's best just to laugh... when all you want to do is cry.

With love from Baltimore,

Mommy, Princess and our very own Super Hero, MC



31 comments:

  1. Hey Bernadette, The fact that he has made some progression is very positive. I so admire your writing skills throughout your posts. Love the fact that Princess slept through the fire alarm sound!

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    1. She is a true child of India... and I love it:)

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  2. Hope I'm so happy MC has so many specialists in his team. Love how Scarlett sleeps through the alarm :-) gorgeous children.Thinking of you all as always x

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  3. Bernadett, MC looks so good I think, and you have sych high spirts. I hope yours doing well and getting good sleep. May all your prayers being answered.

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  4. Wow, he is quite Bollywood with his attentionitis!! Can't blame him though, Princess certainly knows how to work a room.
    As for the black (or is that blue) humor, that comes from being in black places. And irrespective of where you develop that sense of humor, you notice it and understand it with compassion, not judgement.
    Much love to you, every day.
    Bridg

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    1. Thank you for your continued support, from one "funny" mom to another;)

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  5. That's the NICU training for you. My 2 peanuts are still unfazed by any sort of beeping, or hospital like noises (8 months later).

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    1. It sure has its benefits. She's been an all night sleeper since 4 months:) I suppose we deserve a break when we can catch it.

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  6. Yeah I agree sometimes you have to laugh otherwise you will be forever crying. Seizures and all the different types are more complicated than anyone knows. Kisses to Hayden xx. Strength and hugs to you!

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  7. SO sorry re Mr.Cheeks attention-itis efforts. Glad Ms Scarlett is getting her sleep. She is a lovely little girl and must be such a joy through all this.
    Hoping for some helpful news on the medical front.
    Old Ca Grandmother

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  8. you are always in my thoughts and prayers, friend. I admire your never-wavering positivity.

    Much love to you and your beans.

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  9. Before I was done reading the post where you mentioned your "dark?" humor, I thought to myself -- what a great attitude to have:) By that I mean, how amazing to find tiny bits of light even in the dark. I think that is the best way to survive it all:)

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    1. I agree. I may not be able to change the future, but I can ensure I have no regrets regarding the past. Thanks for your lovely comment:)

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  10. I've been telling your story to my husband for a few months and right when I started reading your post today, I stopped and mentioned to him what a utterly wonderful outlook on life you have. Then we both giggled at Scarlett's awesome sleeping ability. You're humor is not tasteless in the least bit, and we all thouroughly love your "voice". Love Master Cheek's new alias.

    You are a hero to us all.

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  11. Hi, I live in Howard County, Maryland. If you live in the area, and wish to be to join a group of parent's who have all had babies via surrogacy in India, feel free to drop me a line. Hopkins is great, our son will be having surgery next month there as well.

    Good luck!

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    1. Hey, Crystal! I had no idea you are so close by. I'd love to join the group. And, yes, we do love Hopkins. Hugs to your son-- hopefully we will not still be here come November...

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  12. The little Neuro Smurf looks just adorable and so does her Princess-sister! Sending you warm cyber hugs and lots of good energy to deal with everything. You are such a good writer and I love reading your blog. Thank you, thank you!

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    1. Thank you for your cyber hugs and energy-- we are always most appreciative, as some days, they are all that keep us going. x

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  13. It takes a great deal more strength to smile and laugh. I am sure MC senses your moods, and it must be such a comfort to him that you can remain so positive. Sending the both of you my love and prayers!

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  14. I say keep the humor coming!!! :-) MC and the Princess are so lucky to have you. And screw work, who needs it?!

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  15. MC is a true Super Hero and his Sister a true Princess. Keep the humour coming. It is fantastic to hear that MC is getting the best possible care and medical management. Love to you all.

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  16. Just wanted to say that I love your sense of humor. It's not tasteless at all. You have to be able to laugh to get through moments like this.

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  17. I admire your strength - I continue to have all of you in my thoughts and prayers.

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    1. Thank you so much. I am doing my best to keep up with blogs. So happy all is well with your homefront pregnancy.

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  18. Just wanted to let you know that I am thinking about you and your gorgeous family.

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    1. just wanted to let you know that we always always appreciate these good thoughts:)

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  19. What a little sweetie! That last photo just makes me want to pick him up and snuggle him. I'll bet the nurses are all in love with that little boy.

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    1. oh how they are! and we are in love with them! we have really come to appreciate what incredibly special people nurses are!

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  20. Gasping in horror at your tasteless hospital humor?? Bernadette, I put my kids in mini isolation gowns, mocking the fact that they had MRSA! You are just doing what you need to do to get through the days, and no one who hasn't been there has room to say anything about it.

    Sad to hear about MC being moved back to the hospital and not home, but hopefully he get whip those 19 doctors into shape to get a plan to go home. Thinking of you so very, very often!

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  21. Ditto everyone's sentiments - great humour, great photos and great blogging (as usual). So happy to hear that you have such an amazing medical team working with you.

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  22. Hoping for some answers for MC. I am all too familiar with the "electrode wig" as we called it. Our daughter has mild epilepsy so we have done the EMU's (Epilepsy monitoring unit) stays before. when she was older and could move around she would get 30 minutes 3x a day to go to the playroom....she had the gauze cap and the trailing electrodes behind her....we would joke "Rapunzul, Rapunzul...throw down your electrodes".... I think the other parents in the hospital thought we were morbid and tasteless...but this is our life, our reality and we can take some of the tension out of it by finding the humor....that doesn't mean you don't understand what your child is going through or understand the gravity of it. I will continue to pray for your master cheeks. He has been a fighter so far and I see him continueing to be so. Hugs from CA.
    kd

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