Posts filed under ‘Down syndrome’
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.
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.
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.
This weekend I was grouchy. I tried not to be…I prayed and cleaned, did yoga and attempted to interact with the family…but my stomach was uneasy. I just felt mad.
Today I got a call from Children’s Memorial Hospital regarding Polly’s test that will take place tomorrow at 12:30pm. As I sifted through details on the phone with the nurse; no solids after midnight, no drinks after 9:30am, yes to medications, no to aspirin, it dawned on me that my grouchy attitude started last Friday and has become more pronounced up until today. On the phone with the nurse, realizing that Polly is back in the hospital tomorrow for a rather involved, possibly dangerous test, I felt the tears come.
I don’t want Polly to have to go through all of this (*this being Moyamoya, the strokes, the invasive tests, the surgeries, possible complications from all of the above.) In that same breath I know it’s not about what I want but who knew you could ever care so much for another soul.
Tomorrow is a part to this Moyamoya puzzle. There’s no way I can adequately explain what angiography is, so I’m going to site Dr. Michael Scott (yes, we like The Office TV show and the fact that the Dr. and the main character’s name is the same brought about some much needed humor during our first week researching MM), the leading surgeon out of Children’s Hospital Boston specializing in Moyamoya.
“Because we need to know flow patterns of blood around the brain, and also to determine whether any blood flow is getting to the brain from arteries outside the skull, all patients need to undergo formal cerebral arteriography (or angiography). This test involves the placement of a small tube (“catheter”) through an artery in the groin up to the neck where its tip is placed in the individual blood vessels supplying the brain, x-ray visible dye is injected, and x-ray pictures taken. This part of the diagnostic evaluation is extremely important in planning the surgery and estimating its risk. ”
So that’s what Polly is having done tomorrow. The nurse told us that they will observe her for 23 hours after she comes out of anesthesia so it’s another Marchenko sleep over at the hospital tomorrow night.
We so appreciate prayers for Polly once again. This test can be dangerous. Strokes and seizures can happen during and after the test. And Polly already figured out from a few weeks ago that she doesn’t like hospitals.
Polly’s been so much fun to be with lately. She repeats everything you say (especially the last word of the sentence, BEWARE). And recently her favorite word is “awesome” and when asked a question, most of the time her answer is “sure.”
Lord, please keep this awesome little girl safe and brave tomorrow. Help the doctors get the pictures they need to put together a surgery plan. We trust you, God, and are sure that you are in control. I pray these things in Christ’s name, Amen.
I will update you all tomorrow.
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?”
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.
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.
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.
October is Down syndrome Awareness month. Last year during this month I wrote part of our story about having Polly in Ukraine and in the midst of her fighting for her life in those first weeks the news of her extra chromosome.
It was a cathartic month, writing about that experience, remembering tears and joys, sadness, darkness, light.
With Evie home just over two months, there’s no way I can blog every day this month.
But I’m going to do a few posts. And I’m going to get practical.
I want to talk about what we do; what I do as a mother of a child with Down syndrome. Parenting Polly and now Evie is different than parenting my other kids. I’d like to explain some of that.
It’s also strangely, beautifully the same.
What we do; Sergei and I, is the same thing most other parents do. We kiss boo boos, make dinner, screw up, and try to figure out 2nd grade math.
There are things we do for our kids with DS; it’s our kind of normal but not a usual component of every day life for a family.
But it’s what we do.
And I’m going to talk about it.
Polly had her end of the year preschool assembly yesterday morning. The youngest in the class, seemingly the most delayed, having only been a part of the group for less than two months, I was sure we were in for an interesting morning.
The announcement sent home the week before asked parents to come to the preschool award ceremony and to help say goodbye to the kids who are graduating to kindergarten. Polly is in a blended pre-k, meaning that some students in her class have special needs and some don’t. The other pre-k class in the school is geared only to kids with special needs.
Polly sat with me but we sat up front, close to the class and close to her teacher, whom Polly loves, Mrs. B. The classrooms of preschool students faced their families and sang ‘the wheels on the bus’ the ‘abc song’ and many many many more songs.
There were two little girls in the front row with Down syndrome. They looked to be maybe two years older than Polly. Perhaps they were graduating?
Anyway, I was quite taken with these two girls. I laughed at their giggles and smiled oozy smiles all over them throughout the assembly. I tried to share the love, to notice what the other kids were doing too, but I only, really, had eyes for them.
That was Tuesday morning. the morning there was a chance that Evangeline’s country was going to vote on whether or not to halt international adoptions which could have quite possibly stopped our adoption.
As I sat there, hugging Polly, completely smitten by other children near me, most differently-abled but oh, so abled, I found myself pleading with God to bring Evie home.
At that moment my love for her was fierce and my desire to parent her was undeniable.
I’ve come a long way in three years. I grieved Polly’s Down syndrome deeply. It took me a while to allow myself to fall in love with her. I was scared of how she would function. I thought of words like limitations and disability and delays.
At Polly’s school I was reminded once again how blessed I am to be Polly’s mom and how Down syndrome is not a scary thing to me at all anymore. My heart thumped loudly in my chest as two dozen preschoolers sang ‘where is thumpkin?’ and I thought about how neat it will be to meet Evangeline and to help her along in this world.
Later that day we recieved an email saying that the vote never even made the docket that day in Evangeline’s country. What a blessing!
I am saving up oozy smiles to meet her next week.
(Polly at three months old)
I remember the first time a therapist came to our home. Polly was nine weeks old and just over ten pounds. I was unsure about someone coming into our living room and working with my little baby and scared of Polly’s diagnosis. I made eye contact with the therapist often, trying to guess what she thought about Polly, trying to figure out what she thought about me.
As the months passed there in St. Joe, I treated therapists like bartenders. It was like every week I was throwing down my cash on the bar counter (by letting them work with my kid) and then in turn they had to listen to me process Polly’s diagnosis through research on-line and question after question about her progress in her sessions all the while communicating just how unsure and frightened I was in the new role I found myself in.
Polly has worked with over twelve therapists in the last three years both in Michigan and in Chicago, at home and in a center based therapy settings. She has laughed and played and cried and screamed and yelled and kicked and held hands and played ring around the rosy. She has hugged and kissed and hid and helped for three years.
I’ve done all that too.
Time passed and I slowly morphed from a frightened new mother of a child with special needs into a knowledgeable mom, ready to fight for her child’s rights, aware of the latest therapy and treatment options, up on the newest medical check list pertaining to Down syndrome, watching the therapists like a hawk to ensure the best therapy for Polly and head over heels in love with my little girl.
Just recently, in the last six months I’ve gotten comfortable sitting in the other room during a session, working on the computer or even at times reading a magazine but really still listening whole heartedly to my child’s session in the other room.
And today it’s done. Next week is spring break for Chicago Public Schools and then Monday, April 13th Polly will go to preschool, three hours a day, five days a week.
All her therapy will take place at school.
I remember thinking that these early years with Polly were going to take forever, and that indefinitely my life would revolve around her therapy needs. But really, therapy did not become our lives. It just became a part of our life, the new norm for our family.
And the 0-3 years are done.
In college I worked a stint as a custom service representative for Sears. That’s a fancy way to say that I was in Telemarketing, which meant eight our Saturdays sitting in a cubicle making phone calls about tire service.
The script is still fresh in my mind. I could pick up the phone this afternoon and do a perfect customer service phone call:
“Please listen carefully to your options and then answer… Did the service…
1. Exceed your expectations
2. Meet your expectations
or 3. Did not meet your expectations.”
My baby is growing up. My baby is growing away.
And I am so very proud of her.
So far my life with Polly has 1. Exceeded my expectations.
(Polly’s last therapy session at our house four days before her third birthday)
Today has been a difficult day for no reason in particular.
I woke up feeling defeated and deflated…and still had yet to start the day.
My attitude got worse as I gathered up hours all around me, I made bad choice after bad choice to sit around and lull myself into a sad comma.
This evening after dinner, Sergei walked to the library with L & Z. After cleaning up the kitchen I put in a video for Polly and sat down to peruse some of my forums.
And I found a post from a mother who just found out her unborn child has Down syndrome. She is in her darkest period…getting over the shock of such a diagnosis and grieving the loss of the child she thought she was going to have.
Polly sat in the living room, mimicking words and signs from her show and I hit the respond button to this women’s post.
And this is what I wrote:
Thank you for being brave and coming here to tell us how you are feeling about your daughter’s diagnosis. You are normal…most of us have been through this and we want to support you.
Let yourself grieve…give yourself time to process all of this and I’d even dare to say go to the end and back, think about everything this will mean for you and your family. Your emotions are expected and it’s common to play the “what if” game. I think it’s all part of this.
One day you will look your little one in the eye and you will be washed from head to toe with a wild love for her…it will clarify so many things in your life, so much so that many other things and experiences will pale in comparison.
For some of us, the beginning was so dark as we grieved the loss of the child we expected. And then… I get giddy thinking about it…, then it’s like lightning zapping you a million times a day, this love for your child who you thought you wouldn’t be able to love.
Oh the light that my daughter brings to my life.
It’s like living near the sun.
My prayers with you! God bless.