Posts filed under ‘parenting a child with Down syndrome’
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.
Polly is doing well.
It’s hard to believe that a week and a half ago she was using both of her hands to lift up her right leg and move it. As Polly was leaving for school this morning she was practically running out the door.
Looking at her a person would be hard pressed to see that she has Moyamoya and requires pending brain surgery.
Yesterday we took her to outpatient physical therapy at the hospital. The therapist was impressed. Polly’s large gross motor function in her previously paralyzed leg is almost fully back. She encouraged us to work on Polly’s smaller movements, for her to continue to wear her SMOs (feet and ankle braces) and for her to keep moving, which does not seem to be a problem.
Our therapy assignments include making forts under the dinning room table, crawling up and down the stairs and tickling. Really, that’s what we were told. No problem!
So for now, Polly is back to regular life. She doesn’t have a clue that next Wednesday (November 4th) she’ll be under anesthesia for her angiograph (a very involved test that will determine exactly where in her brain surgery needs to take place). After that test, her first surgery date will be set, probably in the middle of November.
In an effort to prepare Polly for her upcoming stints in the hospital, I plan to purchase a play doctor’s kit. We’d like Polly to realize that there are many things at the hospital that are done that do not hurt; blood pressure, temperature, checking reflexes.
If you have any other ideas about how to prepare Polly, I’d love to hear them.
And of course, please continue to pray for her 1) that her little body will stay seizure and stroke free, 2) that God will guard her heart and mind, providing her peace and resilience to adjust to her life in the next few months. Pray for Sergei and me that we will continue to trust God for Polly’s health and ultimately to maintain the understanding that not only is the Lord with us through this experience but that he cares for Polly, so much more than we can even fathom.
I am humbled by all the blogs and messages that have posted Polly’s button reminding us all to pray. I am also attempting to keep the rest of our lives functioning normally; Elaina is going to brownies and Zoya needs to practice her piano. Evie is back on board with her sensory diet and we’ve started her school evaluations now that she is three and has aged out of Early Intervention. It’s challenging as four out of six of us are battling colds (thank God, so far Polly is staying healthy).
Polly has some big shoes to fill, health-wise. So far, so good.
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.