We met with Polly’s surgeon

November 12, 2009 at 6:54 pm 30 comments

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.

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Entry filed under: Birthdays, Children's Memorial Hospital, Down syndrome, Gillian Marchenko, Moyamoya, parenting a child with Down syndrome, Special Needs, Therapy.

Orphan Sunday Surgery date changed

30 Comments Add your own

  • 1. joannmski  |  November 12, 2009 at 7:37 pm

    My dear, I wish I could be there to share some of the burden and experience, but it sure sounds like you have some great community locally. I am glad you have a good doctor and I am glad that you have important stuff like friends for Polly too. I am thinking of you guys with warm thoughts and wet eyes.

    Reply
    • 2. ukrainemom  |  November 13, 2009 at 9:13 pm

      Joann, you are sharing it, wth your love, prayers and tears.

      Reply
  • 3. Gma Bayer  |  November 12, 2009 at 7:38 pm

    I love your blog. I am so sad that you have so much to carry and I also know that God picked you two with a plan. I pray all the itme for Polly and I am here and ready to come and to help with any and all things that I can. I love you daughter and I am so proud of the MOM you have become.

    Reply
    • 4. ukrainemom  |  November 13, 2009 at 9:14 pm

      Thanks mom, I have a good example.

      Reply
  • 5. Kristin Dominguez  |  November 12, 2009 at 7:49 pm

    I love your blog.

    Reply
    • 6. ukrainemom  |  November 13, 2009 at 9:14 pm

      thanks!

      Reply
  • 7. RK  |  November 12, 2009 at 8:35 pm

    Gillian, I’m so amazed at all that’s on your plate and the grace with which you handle it all. I’m glad to know that I’m not the only one that does things like cleaning the floor with baby wipes. And I’m certain that God is pleased at the example you’re being to so many around you of the faith that gets you through and the peace that even in rough times can allow us to rest in God’s arms, knowing he’s in control. Keep walking. Keep trusting. We’re holding you up as you go.

    Reply
    • 8. ukrainemom  |  November 13, 2009 at 9:15 pm

      Thanks for your sweet words, RK. It’s easier to write graciously than to always act gracious. But it does help to keep things in perspective.

      Thanks for holding us up.

      Reply
  • 9. Tanya  |  November 12, 2009 at 10:54 pm

    OK, I was in tears by the time I finished reading this post.

    I am so grateful that God has placed such wonderful people in your lives to help you on this journey. And you are so wise to recognize the daily blessings.

    Continuing to pray for complete healing for Polly.

    Reply
    • 10. ukrainemom  |  November 13, 2009 at 9:16 pm

      Tanya, you are always so supportive.

      Thank you!

      Reply
  • 11. Kelly  |  November 13, 2009 at 12:14 am

    Wow. That is a lot for a mama to handle! I pray that more and more peace would stay on you! And that the surgeries go well.

    I had the same “first birthday invitation” experience last year when my Chloe was 6 years old. A friend invited her to her daughter’s party, and I broke down and cried! For years my friends had talked about their girls’ parties . . . and Chloe was never included in any of it. Bless the hearts of the mamas who include our girls!

    Many blessings,
    Kelly
    http://www.ourordinaryday.wordpress.com

    Reply
    • 12. ukrainemom  |  November 13, 2009 at 9:16 pm

      Kelly, yes, here’s to those who include. It felt like magic.

      Reply
  • 13. Aunt Connie and Uncle Richard  |  November 13, 2009 at 2:08 am

    We are thinking of you every day, all day. We love reading your blog. Give the girls hugs and kisses from us. We are here if you need us.

    Love Uncle Richard and Aunt Connie

    Reply
    • 14. ukrainemom  |  November 13, 2009 at 9:17 pm

      Thank you Uncle Richard and Aunt Connie, we love you!

      Reply
  • 15. Melanie Hollis  |  November 13, 2009 at 3:24 am

    OK, Gilian…..I’m with you, sister. I am going to the Father on Polly’s behalf just like I did with my Hopey…..ready to stand for her and believe for her. I am thankful to have a date now. Friday, December 11th will be a HUGE day, and every day leading up to that day is monumental…..each day, stroke free and seizure free.
    Blessings to you as the date draws near. From my own experience, I think you’ll find you get nuttier as each moment passes and “the time” draws nearer. It is totally ok, though, because most people will be incredibly understanding and forgiving. I finally came to a point where I would say to people: “I know you have been talking to me for the last few minutes, but I haven’t comprehended a single word you have said….please forgive me.” My other kids would just look at me like: “Mom, you didn’t just say that.” It is just part of the journey.
    Much love to you, Polly and the rest of your gang. I am praying each and every time your girl pops into my mind.

    Reply
    • 16. ukrainemom  |  November 13, 2009 at 9:17 pm

      Oh how you understand my heart. Thanks, friend.

      Reply
  • 17. Sarah  |  November 13, 2009 at 2:04 pm

    God is so good! I love that you are seeing His hand at work in the midst. Thank you for sharing your heart and His heart toward your family.
    I love you guys and am praying for you all.

    Reply
    • 18. ukrainemom  |  November 13, 2009 at 9:18 pm

      I am very thankful that God is helping us to see little blessings right now. Thanks for your prayers.

      Reply
  • 19. Lyndi  |  November 13, 2009 at 3:29 pm

    Gill, we are all praying for sweet Polly every day. I have people at church asking about her whenever they see me. Your family is such a blessing to so many people, and Polly is such a testiment of strength!

    I absolutely bauled reading about her party invite. That is so sweet, and I love that she has little friends that can see her for who she is.

    My niece, who is autistic, is now 19 years old and still has her friends from kindergarten. SHe was the only spec. ed student in her class. SHe has friends that have gone on to college, some ivy league even, and they all still call her, when they are town they hang out with her. She will never live independantly, yet her friends see her heart, and they love her for it. I pray the same for Polly, that no matter what she achieves in her life, that she will always have friends that can see her heart, cause that is the part of a friend that matters most.

    Love you, praying for you all!!!

    Reply
    • 20. ukrainemom  |  November 13, 2009 at 9:18 pm

      What a great story! Love ya, friend.

      Reply
  • 21. Jen  |  November 13, 2009 at 5:47 pm

    I’m thinking of you guys often and sending prayers. Thank you for keeping us updated and for being such a beautiful person. I’m so thankful to know you and count you among my friends.
    —Jen

    Reply
    • 22. ukrainemom  |  November 13, 2009 at 9:18 pm

      I’m thankful to know you too.

      Reply
  • 23. Amy  |  November 15, 2009 at 1:44 am

    you know that polly is always in our thoughts and prayers. she means a lot to us and so lucky you are all apart of our lives. Just going through hubby’s heart surgery, I know in a way what you are going though too. Its hard.. but the positive thing is it IS in GOD’s hands!!!
    Hang in there Gil. If there is anything you need please know I am here for you and your family!! mmmmmm I wonder if I could make a trip to Chicago????

    Reply
  • 24. Melanie Hollis  |  November 15, 2009 at 5:32 am

    Thinking of you this evening….wanted you to know.

    Reply
  • 25. Melanie Hollis  |  November 16, 2009 at 5:59 am

    Praying for Polly

    Reply
  • 26. Cynthia  |  November 16, 2009 at 6:03 pm

    Stumbled my way here from CJ and the Flege’s. I’m so sorry to hear about Polly’s diagnoses. But I’m also her to bring you hope. My sister, who is currently 37, was diagnosed with moyamoya 12 years ago. She spent over a year experiencing severe, severe headaches to be told they were migraines, or it was all in her head. Finally, after more than a year, after experiencing several strokes (which also went undetected by all of us and the medical personnel), she received the diagnosis. She has since had 4 brain surgeries. However, she lives an independent life. She went back to school and received a Master’s degree. She drives, goes out with friends, and works. She does have some physical limitations due to the strokes, and the fear of her hitting her head. But she lives a full life.

    It is scary, I’ve been there from the sister side of things. It was a long process. And I’m sure it will be for you as well. But there is light at the end of the tunnel, and much to be hopeful for; for you and Polly.

    I’ll be thinking about Polly and praying for you all.

    Reply
    • 27. ukrainemom  |  November 16, 2009 at 6:30 pm

      Cynthia, thanks! It is very encouraging to hear stories like this.

      Reply
  • 28. Melanie Hollis  |  November 19, 2009 at 2:11 pm

    Praying for Polly…..

    Reply
  • 29. Carolyn Atkinson  |  November 21, 2009 at 2:28 am

    I came to your blog through a friend’s blog–I’m praying for your daughter, that the surgery will result in swift healing and no further strokes or damage. And also for peace for you and your family.

    I hope you will not beat yourself up because you didn’t recognize the strokes–clearly you take wonderful care of your children, and how would you have known, without obvious damage? I know, as a Mom, it must have been devastating. Even coping with (relatively) minor issues is tough for me–big ones, how much more!

    I enjoyed the invitation issue as well–we have a 16 year old son with Down syndrome, and social issues are the most difficult for us. Everyone knows him and loves him, they talk to him at the mall and at school, but making friends is tough for him–he is very shy. Our daughter’s friends try to include him and he will hardly speak to them (who knows why!) Oh well, we’ll keep working on it…

    And praying…
    Carolyn

    Reply
  • 30. Sally  |  November 21, 2009 at 10:40 pm

    I too was in tears reading this. Part worry and fear and part joy. Joy of seeing how amazing you are as a family and how Grace is surrounding you. Thanks for naming the date. It will help focus your Canadian prayer team!

    We love that little one and all of you.

    Sally

    Reply

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