Moyamoya? Oh, my.

October 22, 2009 at 6:58 pm 71 comments

It’s been an interesting week in the Marchenko household. 

Last Saturday found me driving down US 131 in Michigan, the autumn tree colors glorious against the crisp blue sky.  The day was breath-taking, really.  It was Michigan at it’s best. 

I was alone,  amazing in and of itself.   There was no one in the backseat to ask to stop hitting her sister, I was not trying to drive with one hand and give someone a snack.  The radio played what I wanted to hear, the space in my mother’s borrowed red little car was clean and all mine.  I also was encouraged by God.  I was happy.

Earlier that morning I spoke at a women’s retreat up in Holland.  My text was Psalm 84 and I talked about Polly’s birth in Ukraine three and a half years ago and that her diagnosis of Down syndrome devastated me and how eventually I felt that God was asking me to pull my family together and to move closer to Him, like the sparrow does in verse 3. 

Even the sparrow has found a home,
       and the swallow a nest for herself,
       where she may have her young—
       a place near your altar,
       O LORD Almighty, my King and my God.

The ending of my shaky, unpolished talk, having had to wipe my forehead of sweat far too many times to look put together, focused on my rejuvenated assurance that Jesus is not only the destination for my life (i.e. eternity with him) but also the companion. 

Psalm 84 talks about pools of blessings gathered together from valleys of weeping.  I stood in front of a group of women  sure that God’s will for our lives is good, in that moment truly confident that if we all could stay close to him, that blessings, both bitter and sweet, were sure to come.  

What joy for those whose strength comes from the Lord,
      who have set their minds on a pilgrimage to Jerusalem.
 6 When they walk through the Valley of Weeping,
      it will become a place of refreshing springs.
      Like pools of blessing after the rains.
 7 They will continue to grow stronger,
      and each of them will appear before God in Jerusalem.

The next morning, Sunday, after visiting one of my favorite places, The Chapel, and witnessing dear friends dedicate their new little guy to God, our minivan was pointed towards Chicago.  Our weekend plan was well thought out; Elaina and Evangeline stayed back with Sergei in Chicago, Lainie had a commitment on Friday night and Evie still needs to stay close to a parent at all times.  Zoya and Polly, both free and up for a sleep over at Grandma’s went with me to Michigan.

Polly was fussy.  I attributed it to an early morning start, a large church and a new Sunday school class.  At one point in the rear view mirror I noticed her shaking her head.  After about a minute she stopped.  And I did not think anything of it.

Thirty miles down the highway she was still crying on and off and generally was not happy.  Zoya and I decided we could all use some brunch and pulled into a Bob Evans restaurant.  Polly seemed to like the idea of pancakes.

You know how you get a child out of the car and stand him or her up, threatening dire consequences if any movement is detected, and turn back to reach in and take another kid out of a seat coming and going from anywhere (there has to be a mom who is reading this that knows what I’m talking about)?  Well, I got Polly out of the car after we parked in front of the restaurant, stood her up and reached back in for the diaper bag.  She immediately collapsed to the ground.  My awesome mommy radar; I thought I had knocked her a bit and messed up her balanced.  I said sorry, she stopped crying enough to laugh at the cutesy voice I used.  I scooped her up and carried her into the restaurant.  Again, I didn’t think anything of it.

We were seated and I quickly ordered meals for all three of us when really, the waitress was only asking about drinks.  Polly started to fuss.  She really just needed a good meal and some attention and she would be fine.  The waitress walked off to put in our order and I got Polly out of her high chair and hugged on her in my lap.

After a couple moments her head started shaking again.

She could not stop herself.

And it clicked. 

Something was wrong.

I barked at Zoya to get her coat, grab the diaper bag and follow me.  Heading out the door,  a manager asked if we needed an ENT.  By then Polly had stopped shaking.  She was breathing, coherent and interacting with me.  I thanked him for his concern and herded my little half of the family under my responsibility back out to our gray minivan.   Zoya was miffed that we had to leave before the pancakes came and I was angry at her for being selfish.

And I was really scared.

Once everyone was buckled into their seats, I called Sergei on the cell.  Now, mind you, it was Sunday morning at approximately 10:55am.  My husband is a solo pastor of a small church on the north side of Chicago.  The night before the guy playing guitar for worship came down with a stomach bug and none of the other musicians were going to be there that morning.  Serg had stayed up until 2am in the morning learning the songs to accompany the singers.  And he had Elaina and Evie all morning during rehearsal, prayer and Sunday school.

I was calling him five minutes before the service was going to start.

“Serg, I don’t mean to bother you but….(crying now), something’s wrong with Polly.”

As I explained to Sergei the shaking, and how she collapsed and how upon our return to the car she would not bear weight, nor could she move her right leg at all, Polly’s head started to shake again.  This time her leg was kicking out too.  She couldn’t stop herself. 

I started to cry harder. 

I imagined my husband standing in the foyer of the building; church members and visitors trickling in.  Him giving silent nods and tight-lipped smiles, making eye contact and trying to focus on the phone with me and understand what in the world his petrified wife was telling him from Michigan City, Indiana.

“OK, Gillian, is she breathing?”

“Yes.”

“Coherent?”

“Uh, huh.”

“Interactive?”

I looked back at Polly and asked her if she was alright?

“No,” she whispered as her head continued to shake.

The shaking finally stopped.  I asked her to kick her feet.  She only could kick her left leg.

“Drive home, Gillian.  You’ve got 50 miles.  Come home and we’ll take her to the ER at Children’s.”

I hung up with Sergei and asked Zoya to pray with me.  Polly bowed her head before I closed my eyes to ask God for his help.  Dear, sweet girl.

I sped home, the next hour went by quickly.  Watching Polly out of the rear view mirror I tried to figure out what in the world just happened.  I knew that she had some kind of incident three times, all lasting about a minute, involving her head and leg to shake involuntarily.  And now, she could not move her right leg, at all.  Her right arm seemed fine albeit a bit slower than the left.

We got to Chicago and I brought Polly into the house.  She kept trying to walk and repeatedly fell down. 

Sergei rushed over about ten minutes after our arrival and Polly and I were once again in the car headed to the ER at Children’s Memorial Hospital.

After about four hours in the emergency room, we were told that Polly had three seizures causing the temporary paralysis of her leg.  By then Sergei was there with us, he found a friend from church to come over and stay with the kids.

The neurologist who saw Polly decided to admit her overnight for observation.  And on Monday they wanted to do an EEG and an MRI to find out what was going on.

I went home Sunday night alone, leaving Sergei laying next to Polly in a hospital bed watching Word World on PBS.

Monday morning at 8:30am Evie and I were back up to the hospital.  After a quick visit for Evie and Polly Sergei took Evie back home and I started my day shift with Polly.

She had an IV in and was not allowed to eat or drink anything, nor was she allowed to sleep.  No food for the MRI, no sleep for the EEG.  The day was long but Polly was a trooper.  We talked and sang songs.  I so enjoyed her laying on me, breathing her in.  The pleasure of having her with me, at peace, was intense.  I prayed throughout the day that Jesus would keep her well and safe.

After a very long day, Polly managed to have both tests completed.  She was put under general anesthesia for the MRI and I sat in the cafeteria and ate some dinner; the first food of the day.  I didn’t want to eat in front of Polly.  I watched other parents in the cafeteria, trying to imagine what illness had brought them there.

Later Monday night Polly woke for the anesthesia, Sergei was with us and we were told the results of Polly’s tests.

Moyamoya .

What a shock.

We had no clue what that was.  I had heard of it on my Down syndrome boards on-line here and there but all I really knew about it was that you don’t want your kid to have it.

The Doctor explained that it had to do with blood vessels in Polly’s brain progressively narrowing, resulting in strokes.  The disease worsens with age.  And the only way to combat it is brain surgery.

On Tuesday we met with the surgeon qualified to do what Polly needs.  He walked us through what an indirect by-pass would look like for Polly; basically it will create new blood vessels providing adequate blood flow. 

Polly stayed in the hospital, commanded to lay flat for the next day and a half and we got to bring her home yesterday (Wednesday).  We have to wait four weeks after the stroke for surgery.  It will probably be mid-november.  And there will be two surgeries.  One for each side of the brain.

We still have a lot to learn about Moyamoya.  But for now we wait, and pray, earnestly, that she will not have any more seizures or complications or strokes in the next few weeks.

Unbelievably, Sergei and I feel like God was preparing us for this.  These last few months I have been spiritually dry; emotionally depleted as we’ve attempted to get Evie the help she needs and get to know her.  The women’s retreat forced me to read scripture and pray.  In preparation of my talk God reminded me of Polly’s story; of tears and struggle and depression.  And later the pure joy and sunshine that Polly has brought to our lives.  God reminded me that he walked with us through that experience and that he is with us for whatever comes.

But I didn’t think something else was coming quite so quickly. Like, the next day.

We appreciate prayer for Polly. 

And pray that I will have enough wisdom in this sitaution to trust God and to walk with him; to gather up my family and once again move closer to him, to the throne of grace, for all of our sakes.

Moymoya?  Really?

10 A single day in your courts
      is better than a thousand anywhere else!
   I would rather be a gatekeeper in the house of my God
      than live the good life in the homes of the wicked.
 11 For the Lord God is our sun and our shield.
      He gives us grace and glory.
   The Lord will withhold no good thing
      from those who do what is right.
 12 O Lord Almighty,
      what joy for those who trust in you.

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Entry filed under: Chicago, Down syndrome, Jesus, Moyamoya, parenting a child with Down syndrome.

What we do ‘Pray for Polly’ button

71 Comments Add your own

  • 1. Tarasview  |  October 22, 2009 at 7:58 pm

    oh Gillian, I am so very sorry. I will be praying!

    Reply
    • 2. ukrainemom  |  October 24, 2009 at 1:40 am

      Thank you Tara. Hugs!

      Reply
  • 3. Leah  |  October 22, 2009 at 8:02 pm

    Oh, I read this through tears! How I remember that fear when you realize something is really, terribly WRONG with your child. You can’t drive fast enough, or think fast enough, or pray fast enough. You just can’t do enough fast enough. We will continue our prayers for Polly and your family.

    Reply
    • 4. ukrainemom  |  October 24, 2009 at 1:40 am

      I know you know what this stuff is like all too well, Leah.

      Thank you for your quick support. I am so glad I know you.

      Reply
  • 5. McKenna  |  October 22, 2009 at 8:22 pm

    Gillian,
    We’re praying for Polly and for your whole family! I can’t even imagine that fear you must have felt/still feel. May God give you peace that only He can give and may you be able to feel a calmness despite being in this storm! Love you!! ~mckenna

    Reply
    • 6. cheryl grant  |  October 22, 2009 at 11:46 pm

      Gillian-McKenna notified me-my dd was dx’d 5 years ago w/ Moya Moya. She has had EDAS on the L side-please email me-I would love to talk with you about Polly and her dx.
      Blessings and prayers~cheryl

      Reply
    • 7. ukrainemom  |  October 24, 2009 at 1:41 am

      Love you too, Mck!

      Reply
  • 8. Kim Robinson  |  October 22, 2009 at 8:41 pm

    Oh, no! I am so sorry to hear this news about sweet Polly. We will be sure to pray for your family, for Polly specifically, and for everyone as a whole.
    Kim

    Reply
    • 9. ukrainemom  |  October 24, 2009 at 1:41 am

      Thank you Kim. We need the prayers!

      Reply
  • 10. Stephanie  |  October 22, 2009 at 8:52 pm

    NO, NO, NO! I am so sorry that you all have to go through this. I will be keeping Polly forever in my prayers. I do hope the poor little peanut finds her way to beat this and find her own miracle. HUGS to you guys.

    Reply
    • 11. ukrainemom  |  October 24, 2009 at 1:42 am

      Thanks Steph! Hugs to Megan.

      Reply
  • 12. RK  |  October 22, 2009 at 9:53 pm

    I had seen notes here and there about this, but I’m so glad (and sad) to see the details. I can’t imagine how difficult this must be, but your ability to already see God’s hand in preparation and trust his ability to provide strength and equip you for the days to come is so amazing. What a great example. We will be praying and we will trust that all will work out with a great team of doctors and a good plan in place. And I will pray for peace for you as you move through the waiting period.

    Reply
    • 13. ukrainemom  |  October 24, 2009 at 1:43 am

      Thanks for your prayers RK. Believe me, the strength is not mine.

      Hugs, friend.

      Reply
  • 14. Ecki  |  October 22, 2009 at 10:23 pm

    Gillian, I’m so sorry to hear this. Polly so special to us since she’s Kayla’s birthday buddy. Saying a prayer for your family.

    Reply
    • 15. ukrainemom  |  October 24, 2009 at 1:43 am

      Thanks Ecki. Kayla’s special to us too.

      Reply
  • 16. Sarah  |  October 22, 2009 at 10:34 pm

    I just read your ministry letter. I was trying to find words. Instead I read this and cry. I am praying.

    Reply
    • 17. ukrainemom  |  October 24, 2009 at 1:44 am

      Thank you for your heartfelt response Sarah.

      Reply
  • 18. Mar  |  October 22, 2009 at 11:21 pm

    Hi, I just read your story from a google alert I received about moyamoya, and I wanted to tell you that you, Polly and your family will be in my thoughts and prayers. I cried so hard reading your story, I knew what was coming next. It broke my heart, but I’d also like to say that I am an active member at moyamoya.com and wanted you to know that you are more than welcome to visit our forum if you have any questions. (No question is too small) There is a wealth of information there, and many wonderful people who traveled the same road you’re about to travel one way or another, and I wanted you to know you’re not alone in dealing with this rare disease. I feel compelled to mention the importance of learning all you can about this rare disease because of the lack of knowledge in the medical community. If you arm yourself with knowledge, you can’t be steered in the wrong direction, like we see so often.
    My continued prayers…

    Reply
  • 19. ukrainemom  |  October 22, 2009 at 11:29 pm

    Thank you everyone. And Mar, nice to “meet” you. I already signed up at Moyamoya.com. Mary Grace pointed me to it.

    Thank you for your support. We’re going to need it.

    Reply
  • 20. ukrainemom  |  October 22, 2009 at 11:29 pm

    oh, ukrainemom is me, gillian

    Reply
  • 21. Tanya  |  October 22, 2009 at 11:33 pm

    Gillian, words fail me. It sounds so much scarier reading all the details. We are praying for Polly and for you and Serg and the girls.

    Reply
    • 22. ukrainemom  |  October 24, 2009 at 1:44 am

      And I know you are a great prayer warrior. Thanks so much.

      Reply
  • 23. Drea  |  October 23, 2009 at 1:28 am

    Thank you so much for your honesty as you’ve felt this huge blow. We love you and Polly so much. She made me love her from the very first time we met, and I’ve missed seeing her. Kev told us a brief summary of all that has happened, and the kids and I thought the surgery was today, for some reason. So we prayed for Polly several times today. But now I read your blog, so we will keep praying for Polly to be completely healthy so they can go ahead ASAP with the surgery. I’m so sorry that you have to hurt like this. And we thought life was complicated before we had kids!! Ha! Now you have 4 little people dependent on you (and Serg). I’m praying for God’s strength, comfort and peace that surpasses all understanding for you and Serg, and for Elaina and Zoya. They must be concerned… worried?

    Love you. Don’t let the soup spill. 🙂

    Reply
    • 24. ukrainemom  |  October 24, 2009 at 1:44 am

      Love you, friend.

      Reply
  • 25. Polprav  |  October 23, 2009 at 1:59 am

    Hello from Russia!
    Can I quote a post in your blog with the link to you?

    Reply
    • 26. ukrainemom  |  October 24, 2009 at 1:45 am

      Sure.

      Reply
  • 27. Amy  |  October 23, 2009 at 2:11 am

    I have no words… just praying.

    Reply
    • 28. ukrainemom  |  October 24, 2009 at 1:45 am

      We appreciate it, Amy.

      Reply
  • 29. Melanie Hollis  |  October 23, 2009 at 2:14 pm

    We share a common friend….Amy Spencer. She has gathered prayer warriors to lift up little Polly. Please know I joyfully join the group. I promise to pray for Polly each and every time she comes to my mind throughout the day. Our Hope, 4 year old with DS, went through her 3rd open heart surgery last week…..and still has an aneurysm in her sweet heart. As a result, we don’t know what her future looks like. We are forced to trust the Lord daily with her life. Even though I cannot fathom what you have gone through, I do know exactly how much your heart is breaking….your fear….your questions. I don’t know you, but I love you……and I love little Polly too…..because I understand. Get ready, because the Father is getting ready to teach you so many new things through this journey. Praying fervently. Melanie Hollis

    Reply
    • 30. ukrainemom  |  October 23, 2009 at 2:49 pm

      Melanie, thank you so much for your words and for your prayers.

      I will pray for Hope too.

      Love ya, sister,

      gillian

      Reply
  • 31. Christina Smith  |  October 23, 2009 at 8:49 pm

    I wish I had something eloquent to say. I just wanted to let you know I read your story and my heart is bleeding for you. I wish I had your faith, but wouldn’t want to rip my heart out my chest for it. I know He gives us what we need when we need it, but I’m so far from learning the lessons you are learning. I will pray for you and your family as much as I can through the next couple of months and look forward to hearing what God does next.

    Reply
    • 32. ukrainemom  |  October 24, 2009 at 1:46 am

      Love you Christina.

      Reply
  • 33. Amy  |  October 23, 2009 at 11:05 pm

    Thank you for sharing all of this, we will be bringing you all before the Father in prayer. Hugs to all the girls and to you!

    Reply
    • 34. ukrainemom  |  October 24, 2009 at 1:46 am

      Thanks so much for your prayers and love.

      Reply
  • 35. Kris  |  October 24, 2009 at 2:45 am

    I read this through mommy tears, I feel very attached to Polly after reading her story last year. Prayers will be said in earnest for her and for her parents.

    I understand the way you feel after adoption, the culmination of so much stress and happiness and then the struggle as you and your new daughter learn about one another. That gets better with time, much better.

    Reply
    • 36. ukrainemom  |  October 24, 2009 at 12:56 pm

      Thank you Kris.

      Reply
  • 37. Stacy  |  October 24, 2009 at 12:00 pm

    You all have my thoughts and prayers. May God be with you, comfort and strengthen you during this difficult time.

    Reply
    • 38. ukrainemom  |  October 24, 2009 at 12:56 pm

      Stacy, we appreicate the prayers.

      Reply
  • 39. Melanie Hollis  |  October 24, 2009 at 4:17 pm

    Praying this morning for little Polly…..can’t get her out of my mind. Is there anything your family needs (or will need)? If so, we would love to help; even though we are not right around the corner, please keep us in mind. By the way, our family is considering adopting again (we adopted our little Charlie, who has DS, domestically a year ago). If we do, we will most likely go through Reece’s Rainbow. Is your new little girl close to the same age as Polly?? When you get some time, I’ll look forward to seeing a picture of the girls together. What a blessing and testimony your family is!!!

    Our entire family is praying for sweet Polly (love her name),
    Melanie, Chappy, Caleb, Lydia, Natalie, Hope, and Charlie!

    Reply
    • 40. ukrainemom  |  October 24, 2009 at 6:41 pm

      Melanie, we have so much in common. We so appreciate your prayers.

      I’m going to show our girls Hope’s pictures so that they can be praying for here too.

      Reply
  • 41. joannmski  |  October 25, 2009 at 5:43 am

    Oh honey. You handled that so well. I marvel at how God enables moms to face what they need to. I am very proud of you and am praying for dear Polly. BTW, that is the first time I have seen her and Evie together and they are just darling. You can do this!

    Reply
    • 42. ukrainemom  |  October 26, 2009 at 3:05 am

      Thanks, xo.

      Reply
  • 43. shea drummond  |  October 26, 2009 at 2:16 am

    I am so very sorry. Polly has always been very dear to my heart. I remember when you first joined downsyn.com. I swear I thought Polly looked like a beautiful little china doll. I am praying for her and have posted her button on my blog.

    Reply
  • 44. ukrainemom  |  October 26, 2009 at 3:06 am

    Thank you Shea for your prayers and for spreading the word for prayer.

    Reply
  • 45. christine baker  |  October 26, 2009 at 3:55 am

    My dear ones – – I don’t open my e-mail very often, Aunt Rosie called me tonite to be sure I knew about Polly, and now I do. My heart aches for all of you, and you will all be in my prayers. I carry Polly and Evie’s pictures in my daily prayer book, and havesince I got the first ones, so they go to Mass with me every day.
    much love – Aunt christine

    Reply
  • 46. Melanie Hollis  |  October 26, 2009 at 9:17 pm

    Loved seeing the photo of the girls together…..precious. Our oldest daughter, Lydia, has had a heart for the children of Reece’s Rainbow for some time. Last December, in the place of gifts, she asked to be given donations to Reece’s Rainbow; in addition, she babysat during the months of November and December, while parents did Christmas shopping, to raise money. Through our search for pics of your Evie, we found Evie’s blog. Imediately, Lydia recognized her as a little one she had followed. As a result, she feels an automatic bond with your family. We are continuing to pray for Polly and will be anxious to hear updates as you have them.
    Many Blessings, new friend!
    Melanie Hollis and Family

    Reply
  • 47. Melanie Hollis  |  October 27, 2009 at 11:41 pm

    Praying for sweet Polly this evening…..thinking of her lots.
    Blessings!
    Mel

    Reply
    • 48. ukrainemom  |  October 28, 2009 at 2:08 am

      thank you, Mel.

      Reply
  • 49. Melanie Hollis  |  October 29, 2009 at 4:04 am

    Praying for Polly right now….wanted you to know you are being lifted up! No need to thank me…..it is such an honor to go before the throne for such a beautiful little princess of the Almighty. It is hard to imagine that He adores our special little ones as much as we do, isn’t it???

    Reply
  • 50. Bethany  |  October 30, 2009 at 12:51 am

    Oh my gosh, my heart is breaking to read what happened that day. 😦

    Reply
  • 51. My Name is Sarah  |  October 30, 2009 at 1:34 am

    We are praying for your family.

    Reply
  • 52. Melanie Hollis  |  October 30, 2009 at 2:49 am

    Praying for Polly…..
    Much Love,
    Melanie

    Reply
  • 53. Sandy Fox  |  October 31, 2009 at 12:13 pm

    Praying here too!

    Reply
  • 54. Melanie Hollis  |  October 31, 2009 at 9:43 pm

    Thinking of Polly and saying a prayer….a friend yesterday told me about Polly and asked me to pray. I was thrilled to be able to tell
    her I was already “on it”. God’s way of gathering praying warriors never ceases to amaze me. He is so good!
    Love to Polly,
    Melanie

    Reply
  • 55. Melanie Hollis  |  November 2, 2009 at 5:41 am

    Thinking of all of you and praying for precious Polly-girl. She has become a household name…..
    Love,
    Melanie

    Reply
  • 56. Kristin  |  November 2, 2009 at 3:05 pm

    Hi Marchenko Family. I learned of you through the great Gibbs electronic grapevine and then I found my way to your site. Wow, what a trying experience you are in the middle of. Know that you are all in our prayers- especially on Wednesday.

    We are related somehow (my mom is Karen Gibbs Martin and she is the daughter of Horace). My mom has kept me abreast of your amazing family story. We live in Chicago too. Please let us know if we can do anything to help.

    Sending all our good vibes your way. Stay strong-
    Kristin Martin Erlenbaugh

    Reply
    • 57. ukrainemom  |  November 2, 2009 at 4:19 pm

      Kristin, thanks so much!

      Reply
  • 58. waitingchildren  |  November 2, 2009 at 7:57 pm

    hey, its Amy from your dossier, oh I am so sorry to hear about one of you baby girls! I am watching and praying the right doctor does what is needed and you will have your old girl by your side once more even better than before by Christmas-a rebirth of your babies! You can do it! We are thinking about you.
    Amy

    Reply
    • 59. ukrainemom  |  November 2, 2009 at 8:34 pm

      Amy, thanks so much. I appreciate your concern and prayers.

      Reply
  • 60. Penny  |  November 2, 2009 at 9:41 pm

    My daughter was diagnosed with moyamoya in 2005 after several TIA’s. She has since gone through 4 brain surgeries and unfortunately still suffers today with TIA’s and other medical problems. My prayers are with you and your family.

    Reply
  • 61. Sandie Flannery  |  November 6, 2009 at 12:24 am

    Gillian, I will storm Heaven for your Polly and ask those on my prayer chain also. Sandie

    Reply
  • 62. On Grace « Mutterings & Musings  |  November 10, 2009 at 1:51 am

    […] {here and here and here} of Mommies dealing with new and frightening medical conditions for their […]

    Reply
  • 63. Maria João and Bruno  |  December 7, 2009 at 12:59 pm

    Gillian,
    Me and my son will be praying for Polly.
    You’ll be able to make the wisest decisions.
    The lord will help you with that.

    Kisses
    Maria João and Bruno (6, DS)

    Reply
  • 64. Susan Shellito  |  December 17, 2009 at 3:34 pm

    Heavenly Father, I lift up to you this family and in particular, this little girl, Polly. I know that in Your eyes, she is perfect and whole, despite her “diagnosis” here in the realm. I ask that you will use her life to Your honor and glory. You have created her to be a light to all the world, give her family the trust and patience to allow her to be all she can be in this life. And, Lord, I ask for a miracle in her physical life as well. Please heal her body. Use the doctors’ and nurses’ wisdom — and give them extra wisdom — to know what to do in Polly’s case. To Your honor and praise and in Jesus’ name. Amen

    Reply
  • 65. Kay Burris  |  December 17, 2009 at 4:58 pm

    I heard about Polly thru Alida Sharp’s blog. I read your 10/29 Moyamoya comments. My heart was touched.I prayed for Polly & will continue. I just lost my adult son to a long bout with cancer so I feel your heart pain in concern for Polly’s well being. What we both know & can count on is our Savior’s mercy and love for us!
    May God continue to bless you & your family with all that you need and keep you tucked under His wing and close to His heart! Love in Christ Jesus, Kay

    Reply
  • 66. Michelle  |  December 19, 2009 at 1:33 pm

    sending our prayers for you and Polly from maine. I am pretty sure that my dear friend Mary is helping you understand all of this. She and kathleen are an inspiration to me that you CAN get through almost anything in this world and still manage to smile. All our best to you, Michelle & Ciarra

    Reply
  • 67. Susan Shellito  |  December 30, 2009 at 3:55 pm

    I have been praying for you, for Polly and for your whole family/extended family. Father, that you will use these circumstances to draw this little precious one closer to Yourself and that You will use this trial in the life of those who love her for Your great glory. I know that You, in your infinite wisdom, have allowed this evil for reasons we cannot understand. But we know You and that You are a loving God who loved us enough to sacrifice the life of Your Own Son that we might be redeemed. So in that, we trust You with this little life and with the lives around her. In Jesus’ Name, AMEN

    Reply
  • 68. Alison  |  March 12, 2010 at 9:38 pm

    Oh my… That is not good! I feel really sad for Polly! I will certainly keep her in my prayers! All the best of luck!

    P.S I found your blog on the internet by searching around about Down Syndrome, because I wanted to know more. I have become quite interested with them. Well, anyway, best of luck and prayers!

    God Bless,
    Alison

    Reply
    • 69. ukrainemom  |  March 21, 2010 at 2:43 am

      Alison, thanks so much for finding our blog. Polly is doing great now! We are so thankful. If you’d like to follow along our new family blog is:

      http://gillianmarchenko.blogspot.com/

      thanks so much!

      Reply
  • 70. Kymber Petty  |  April 20, 2010 at 5:28 am

    Gilly, as i read this i noticed the date…it was my son’s 15th birthday and while i celebrated my child you fear for yours, i pray for you and your family daily and i am blessed by all of you and God has given you beautiful treasures…..GOD BLESS to all of you!

    Reply
  • 71. Alfreda Cusimano  |  June 1, 2016 at 2:24 pm

    that’s good, thanks for sharing,.. I think this is great blog

    Reply

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