Posts filed under ‘Therapy’
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.
(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)
…We might get to take the older girls with us to get Evangeline. They would just stay the first two weeks with Sergei and come home with him. Then I’ll stay another three or four until everything is complete. The funding is almost there to do it!
We are waiting for one last paper and then the beginning of the end will start. We’ll ship our dossier to Ukraine and wait for a court date.
In other news: Zoya is having a puppy dog 7thbirthday party tomorrow. Her actual birthday is Sunday. It’s puppy dog b/c that was the motif in abundance at the Dollar General and I could pull it off still with her as something cool. So the eight little girls at the party are getting their faces painted like dogs, we’re serving cocoa puffs in brand new dog bowls and the entree is hot dogs, of course!
In other news: Sergei and I are going to a Gala Saturday night. It’s a large fundraiser for school. I am intimidated at such things but my friend Amy gave me great advice: come an hour late. That way, everyone will have already had a drink and there will be so many people there we will just blend in. She said it’s easy to live early that way too. Oh, so wise, Amy!
In other news: Polly’s birthday is next weekend, April 5th. She is having a My Little Pony party b/c that was the motif in abundance at the Dollar Store three months ago. I bought all the loot and put it down in the basement and am now trying to conjure up the needed energy to actually invite a bunch of three year olds over for another party so soon after Zo’s. Polly could care less, really but I do have the stuff. Hmmm…
In other news: After Polly turns three she will start preschool five mornings a week in a blended classroom four miles from our house. She can even take the bus if need be. Whoa. I think we’ll drive her thanks.
In other news: There really isn’t any news about Elaina right now except that she has made folding the laundry her job and to date has folded four loads of laundry and placed the clothes on each person’s bed to put away. It’s like Christmas for me every time she does it.
In other news: Sergei is doing well. He started another class last week, chipping away one class a semester at a Historical Christianity Masters. Funny, the guy dresses up in a suitcoat for class, for the zoo, for walks but not for Church when he’s preaching. He’s so edgy! Also, He brought me a dozen yellow roses the other day for no reason. Wow!
In other news: I am making time to write now. There are a couple essays in the works and I am making plans to try to publish some things. It feels good to do something outside of mothering and adoption and therapy and church. Also, I am dying without coffee and am counting the days until Lent is over. I know, very spiritual.
Elaina and Zoya both have new haircuts.
Sergei and I try to spend one on one time with each kid here and there. My focus has been mainly on the adoption these past four months. My kids understand generally and we are all in this together to get Evie home but it still is important for them to get our full attention, at least once in a while.
So we do dates. Me and Elaina at Panera Bread. Serg and Zo at Dunkin Donuts, Me and Zo at a cafe, Serg and Elaina at Starbucks. And we spring it on them. “Guess what? Tonight mom is taking Zoya on a date!” And away we go. We also go on family walks after dinner, read together, eat dinner together as a family almost every night. Most recently each girl had a turn to go with me to get a haircut.
When I’m with one of the girls I try to see how she is doing in general. We talk about school and the adoption, about what they want to be when they grow up (and I might add, these conversations are very entertaining); about shoes or books or music.
There have been a few comments made, either to me or indirectly, about peoples’ concern for our kids regarding the adoption. Some people think that adding another child with disabilities to our family is unfair to the children we already have.
These comments hurt.
But then I have to step back from that hurt and hear what is being said and actually think about it, for all of our sakes.
It would be dishonest to say that Polly’s needs and schedule do not take up a lot of time. It would also be dishonest to act like there is no fear about bringing Evie into our family.
I have felt guilty this year because I’ve only been in Lainie and Zo’s classrooms once each, I never think to set up play-dates, I have no idea who is the room mother for each class.
I think about how it will affect Elaina and Zoya and Polly and Sergei and me to add a sixth member to our family. I think about physical therapy, occupational therapy, developmental therapy, speech therapy, doctors visits, hearing checks, fittings for glasses, ordering orthotics, IEPs times two. Doing all that we’ve done with Polly again. Everything from here on out X2 as far as therapy life goes. Everything from here on out X4 as far as kids go. I do think at times, just like parenting any child, it will be difficult.
When Sergei and I were praying about adoption, before we committed to anything, our kids knew. They prayed about it with us.
We talk about Down syndrome a lot in our house. And Elaina and Zoya have enjoyed the company of many different individuals, various ages and functionality, who happen to have Ds.
Although I don’t volunteer in Elaina’s class like the inner mommy tells me to, I was in tears at her parent-teacher conference, hearing words like “compassionate,” and “thoughtful” being said about my daughter.
“Mrs. Marchenko, Elaina is a joy to have in class. She is always looking out for the underdog and makes sure that everyone is included at all times.”
I remember what I was like in 2nd grade. Words like ‘compassion” would not have been equated with me. In my elementary years, I painfully tried to fit into my new school (my family moved across the state my 2nd grade year). My best stab at fitting in, that is, take the focus off of me, was to ridicule someone else. Usually someone who was slower or un-coordinated or had orange hair or smelled strange. Someone everyone else picked on for being different.
Elaina’s and Zoya are growing up another way.
I sat there, squeezed into the tiny 2nd grader plastic red chair at my parent-conference, trying to hold it together, my heart gushing with thankfulness to God that he is teaching my children at the ages of 7 & 8 what I’ve had to learn in my 30s.
At times, our lives are difficult. At times our lives will be difficult.
I have no idea how I will manage four children daily. I am starting all over with another child with low muscle tone. Who isn’t walking. We may need to use the stander. We’ll be ordering orthotics for Evie and getting her heart checked. There’s possibly another tonsillectomy in our future. And depending on how life goes she may live with us in her adult years. Her sisters may step in at some point and help her and Polly out in life as need be.
But I know God has called us to adopt this little girl. And I believe in my gut that what He has for us is good. He’s called all five of us…Sergei, myself, Elaina, Zoya and Polly to adopt her as a daughter and as a sister.
And that’s my stake in the ground.
God willing, next year around this time, I’ll be writing posts about four hair cuts, about fitting dates in with four little perfect creations that God has asked me, for a time such as this, to mother.
Most of Polly’s therapies are now at a therapy center. She goes to a therapy preschool two times a week for two hours. She’s at the center three more hours at various times for physical therapy and speech.
At home she sees her developmental therapist and her occupational therapist. We have a little table and a chair she sits at for therapy time.
In the past I’ve always sat in on her home therapies. I learned what Polly was learning and then repeated therapy activities with her throughout the week.
Recently Polly has really struggled with home-based therapy. She doesn’t want to work and assumes her new independence by geting up and crawling or walking away. When I was close she would come to me and I would ease her back to her seat.
So for two weeks I’ve sat in the dinning room and worked on the computer while she had her session.
It’s been great! She interacts with the therapist much better without mom right there, follows directions, stays on task better.
My girl is working me out of a job!
I’m so proud of her.
Yesterday was a crazy day.
From the time I woke up until my head hit the pillow I was running around; a meeting at my house in the morning, Polly met her new developmental therapist at Noon, kids and homework in the afternoon, a mad dash to three different stores in the evening and then back home to make party favors for a baby shower we are having at church Sunday.
Those who know me well understand that all this activity is so not me.
At some point in the afternoon I watched Polly and Elaina roll around on the floor. It hit me that Polly’s body, when stretched out, is long. She is longer than half of Elaina’s body, more like 3/4. For a second, both girls looked huge to me and I caught my breath. Where has the time gone? I looked behind me and in front of me but I just couldn’t find it.
Later I drove down Ashland at dusk and saw a group of six or seven-year-old boys kicking soccer balls around in a little green field. Two or three men, assumingly dads, stood around, hands in pockets, sunglasses on. Their voices rang out to the boys as cars and SUVs zoomed by. People driving, no doubt, to something incredibly important. Driving on in our busy, jam-packed days of life while boys in a soccer field learn how to kick a ball with the insides of their feet.