This blog has a new home!!

Check out my new digs!!  Would love you to continue our journey with us at the new Pocket Lint.

http://gillianmarchenko.blogspot.com/

December 10, 2009 at 12:39 am 2 comments

my blog is changing addresses!

…in a few days.  Stay tuned!

December 7, 2009 at 4:36 am 1 comment

Bugged by a stomach bug

Polly got the stomach flu out of the blue two nights ago.  She sat up in bed and threw up all over the place and proceeded to throw up almost every two hours for the next day.  By nine last night it was apparent to us that a trip to the ER was in order.  Polly hadn’t had a wet diaper in four to six hours by then, nor had she been able to keep down her seizure medication, her aspirin or any other of the medications she takes.  She had grown a bit listless too.

Usually with a stomach bug we’d nurse a kid through.  It’s different with Polly now though.  You can’t be too careful with her health.

So I bundled her up and she and Sergei took off into the night; an excursion no one was excited about.

Thankfully the doctors did not seem to think she needed an IV or to be admitted.  They gave her medicine to stop the vomiting and after a while she was able to drink and keep down 4 oz. of pedialyte.  Sergei and Polly were home by midnight exhausted but happy to be back.

Polly slept through the night without any messes and today she has perked up a bit.  So far she’s had a wet diaper this morning, is still on the nausea med and is sipping apple juice.  About a half hour ago I gave her the other vital medications for her Moyamoya and now she is participating in reading time; her book is imaginary and she is speaking a language I don’t understand. 

But I’m happy to hear the story.

Thanks to all of you who caught the prayer request on Facebook.  I’m thrilled she didn’t have to go through another hospital stay before her surgery. 

13 more days until her first surgery.  I pray that she can stay healthy and stroke free until then.

December 4, 2009 at 5:22 pm 5 comments

Polly’s favorite

There is a quick post up at Expecting Evangeline about how much Evie loves her grandpa.

Well, Polly’s favorite relative is her ‘Aunt Mimi’ (my sister, Amy).  Every day at bed time and nap time we have to sing ‘Happy Birthday’ to Mimi and Bill (Amy’s husband) at least five times before she’ll actually lay down.  She had a blast with all the family but particularly loved her afternoon at Aunt Mimi’s house with their dog, Sparky.

We are so thankful for a loving and helpful family, especially during times like this.  Here’ s to you, Aunt Mimi!!

And keep praying for Polly.  Right now she has a cold that absolutely has to be cleared up for her surgery on the 17th.  Overall, she is doing well and we haven’t seen any signs of seizures or strokes.  Thank God!!

November 30, 2009 at 3:18 pm 4 comments

Surgery date changed

There was a conflict with December 11th so Polly’s new brain surgery date is Thursday, December 17th.  Hopefully, this date will stick.  It is the first of two procedures that need to be done for her Moyamoya so the second surgery, God willing, will probably be mid-January, four weeks after the first.

Ive known about the date change for a few days but didn’t feel like posting about it.  It was discouraging to hear we have to wait longer.  But Polly seems to be completely restored from her stroke.  We pray every day that she won’t have any more seizures or strokes before the surgery.

All I want for Christmas is my little girl home and a successful surgery.

I’ll write a longer post soon.

November 22, 2009 at 2:51 pm 9 comments

We met with Polly’s surgeon

and I saw the inside of my daughter’s brain on a computer monitor.

Yesterday, Polly, Sergei and I trekked off to  Children’s Memorial Outpatient Clinic on Clark Street to meet with Dr. Alden, Polly’s Neurosurgeon.  His full name is Tord Alden, which sounds really smart to me.  A good sign.

I was surprised that Polly’s blood vessels are quite thin on both sides of her brain.  Her Moyamoya is more advanced than I thought it would be.  The angiogram took pictures of how the blood actually flows for Polly in her head and unfortunately, it’s not flowing much.  Dr. Alden also pointed out three or four spots on each side of her brain that had gray clouds.  These areas are from past strokes.  Unbelievable!  Our baby has had multiple strokes and we didn’t even know. 

It breaks my heart.  As a mom I expect to know when something is wrong with my kid.  I count on that internal mother intuition that usually clues me in on ear infections or when someone is about to puke.

But I didn’t catch the strokes…

Dr. Alden talked us through the surgery, an indirect by-pass.  I’m not going to act like I completely understand his explanation but I think he told us that they will cut out a piece of her skull, find a large artery and actually place it on her brain in order to create new blood flow.  Again, referring to Dr. Scott’s  (out of Boston Children’s Hospital) explanation:

We separate this artery from the tissues around it, keeping blood flowing through it. We open up a window of bone beneath the artery, and then use a microscope to carefully open all of the coverings of the brain right down to the brain surface. The artery is then placed directly onto the brain, and the tissues around its walls are sewn with tiny sutures to the brain surface to keep it in contact with the brain. Then the bone window is replaced securely, and the skin incision closed. In some patients, we may also place an extra small hole (a “burr hole”) in the skull away from the first incision, and at this hole we also make tiny openings in all of the coverings of the brain before closing the incision.

Dr. Alden at Children’s prefers to do each side of the brain separately, a month apart.  He also said it is imperative for us to wait four to six weeks after Polly’s stroke for the first surgery.  Her brain needs to do what it will to heal itself to diminish chances of bleeding and infection during the procedure.

The first surgery is scheduled for Friday, December 11th.  There will be about an hour and a half of cutting, add in anesthesia and waking up etc… we’re looking at 3 hours for the whole process.  Polly will definitely spend the first night in ICU and afterwards she’ll either be sent to another floor to recover or if she is doing really well, she may be able to go home the next day (WOW!).

So here is where I’m at personally with all of this:

Firstly, I thank God that even though Polly has had strokes in the past, he has kept her functioning well, without any residual damage from her little body’s upheaval to date.  Her most recent stroke (the one I saw) left the most damage to her right side (likewise, it occurred on the left side of her brain) and she is recovering beautifully.  If anything, the stroke has knocked a bit more of a sense of humor and sassiness in our girl.  And we’ll take it!  Someone reminded me today that God loves Polly even more than we do.

Secondly, of course, I’m scared.  My time is spent breathing in and out prayers for Polly by day and on my knees next to her bed at night.  Every time I hear a thud or a cry my heart sinks.  I guess it’s human nature (at least for a mother of a child with special needs) to expect the other shoe to drop, for her to have another stroke pushing this whole process back or even worse, really messing her up.  It’s exhausting, honestly.  I’m forgetting to RSVP for birthday parties for Lainie and Zo and there is a constant nagging thought in the back of my head that I’m forgetting something.  This morning I swiffered the dinning room floor with a baby wet-wipe and was thrilled that enough energy was mustered to clean at all.  I’m not doing anything well and yet, by the grace of God, time is going by, like it always does. 

Thirdly I’m spurred on to live day by day, ticking dates off on the calendar in my mind; another day Polly gets through without incident; a gift.  This strength is gathered from my relationship with Christ, the Bible, my rather funny and very attentive husband, eskimo kisses from Lainie, Zo and Polly, warm smiles and chuckles from Evie. 

Strength and encouragment comes from the most unexpected places as well.  A mom from Zoya’s class emailed this morning.  She excused my lack of RSVP-ness and went a step further inviting  Elaina to her daughter’s party Saturday which will certainly break up our weekend.  Sergei will be gone for his back-to-back six hour class Friday and Saturday on Patristics

This kind of stuff keeps happening…a meal or a bouquet of flowers on my doorstep, friends on our street inviting my older kids over for playdates.  Therapists making up missed appointments and ladies from church come over and watch our kids so Serg and I can go to Polly’s appointments together pro buno, even though they could use the money (couldn’t we all?)  Emails and facebook  comments, people (both friends and strangers) join their names to so very many in prayer for Polly during this challenge.

And this morning as I picked up Polly from preschool a little girl walked up and handed us a birthday invitation.  The little girl’s mother and I locked eyes and before I realized I was talking I thanked her and said,

“When she was born I wondered if she’d get invited to birthday parties…this is her first one, and you guys are going in her baby book.”

The mother started to cry, Polly’s loving teacher Ms. Baba (Barbara) had tears in her eyes and ten little preschoolers continued to run circles around us completely unaware that God’s grace was happening right there, right then.  He was showing me once again, His love and care.

We’re here and today, thanks be to God, we are alright.

November 12, 2009 at 6:54 pm 30 comments

Orphan Sunday

UPDATE!!!  LERA HAD A FAMILY COMMIT TO HER!  YAHOO!!

LERA, Girl, Born August 7, 2005

Lera

And if this one specific child doesn’t have a family committed to her adoption within the next few days, she will be sent to a mental institution where she will then be unadoptable and ‘sentenced’ to a crib for the rest of her life. Here’s a little about her: Lera is a gorgeous little girl with blonde hair and blue eyes. She is 4 years old. She is quite high functioning, and doing very well. She has flat feet and a systolic heart murmur, but no major heart conditions. She is able to walk and climb, she eats by herself, dances, and understands and follows directions. She has also been transferred to the regular class, so she living and learning with her typical peers. There’s a grant of $1,000 available to the family that adopts her. It’s so sad that she’s run out of time. She is in RUSSIA and those are closed institutions. Here’s the info about adopting from her region of Russia: 2 trips Both parents for first trip, about one week Both parents travel for 2nd trip, approximately 14 days (One parent may leave after the court proceedings are finalized, after about 5 days.) Total program and travel fees under $25k Fee includes a $1000 orphanage donation Only one child can be adopted at a time Married couples and single mothers may apply Please pray for a family for Lera to come to her rescue quickly!! Are you that family?

Find out more at Reece’s Rainbow.

November 8, 2009 at 7:42 pm 8 comments

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