Friday, July 03, 2009
A Blog Pause
...to enjoy fireworks and fireflies. I'll have lots of pictures and stories to share soon, so stay tuned. Thanks to everyone who continues to read and respond. Happy 4th of July!
Sunday, June 28, 2009
Health and Children with Down syndrome
When Bridget was little, we heard over and over how children with Down syndrome are more likely than typical children to have hearing and vision difficulties, thyroid dysfunction and an increased risk of developing leukemia (in addition to the heart defects and complications in roughly half of kids with Ds).
We heard that children with Down syndrome also more likely to suffer from chronic ear, chest and sinus infections. In general, children with Ds tend to have more health complications and generally weakened immune systems compared to typical children. At least that's what we read and heard.
We were always on the look out for illness with Bridget. I worried that it would take her longer to recover when she did get sick.
We spent Bridget's first month in the hospital, so the whole family became practiced in taking extra precautions to keep her well. (The germs that come with four school-age siblings were a major concern initially.)
But our experience with Bridget has been much different than what we prepared for in her first few years. I can count on one hand the number of times she has been sick. I'm always extra concerned about her when she starts to come down with something, but she has proven me wrong time and time again. She holds her own during illness and bounces right back.
For anyone who is curious, Bridget has received her regular immunizations (on a slightly modified schedule) and within her first year also received shots of Synagis, an antibody given to protect premature infants (and other babies at elevated risk) from respiratory syncytial virus (RSV). She is not on medicines, vitamins or supplements of any kind. She does eat a variety of healthy foods (salmon, avocado, berries, oatmeal, squash, peas, whole grains, lean meats, yogurt, etc.), has very few sweets and limited dairy (other than yogurt). She drinks soy milk.
I realize that Bridget is only (almost) three, and we will continue to screen for the health concerns that are more common in people with Ds. I need to keep reminding myself, though, that Bridget is an individual, and will have her own unique path to travel. While I have no idea whether anything we have done (or not done) has made a difference, I do know that her health--along with her abilities and achievements--can't be predicted.
We heard that children with Down syndrome also more likely to suffer from chronic ear, chest and sinus infections. In general, children with Ds tend to have more health complications and generally weakened immune systems compared to typical children. At least that's what we read and heard.
We were always on the look out for illness with Bridget. I worried that it would take her longer to recover when she did get sick.
We spent Bridget's first month in the hospital, so the whole family became practiced in taking extra precautions to keep her well. (The germs that come with four school-age siblings were a major concern initially.)
But our experience with Bridget has been much different than what we prepared for in her first few years. I can count on one hand the number of times she has been sick. I'm always extra concerned about her when she starts to come down with something, but she has proven me wrong time and time again. She holds her own during illness and bounces right back.
For anyone who is curious, Bridget has received her regular immunizations (on a slightly modified schedule) and within her first year also received shots of Synagis, an antibody given to protect premature infants (and other babies at elevated risk) from respiratory syncytial virus (RSV). She is not on medicines, vitamins or supplements of any kind. She does eat a variety of healthy foods (salmon, avocado, berries, oatmeal, squash, peas, whole grains, lean meats, yogurt, etc.), has very few sweets and limited dairy (other than yogurt). She drinks soy milk.
I realize that Bridget is only (almost) three, and we will continue to screen for the health concerns that are more common in people with Ds. I need to keep reminding myself, though, that Bridget is an individual, and will have her own unique path to travel. While I have no idea whether anything we have done (or not done) has made a difference, I do know that her health--along with her abilities and achievements--can't be predicted.
Friday, June 26, 2009
Things Mama's Gotta Have
There's a post up on Down Syndrome New Mama: 10 Things Mama's Gotta Have for a new baby with Down syndrome (and a request for other bloggers to make their own lists). So, here are links to items--yeah, I know it's more than ten :)--we found invaluable in Bridget's first year:
Items to save mom and dad's sanity:
- When Bridget was a new baby, the Zaky was a great item to have. I used it to position her in her carseat, to position her for sleeping, or to place under her head while I changed her diaper (she had reflux when she was tiny, and this made it so she was not lying flat). While it is a functional item for parents, the Zaky provides a sense of comfort for babies. It is weighted, washable and soft. Ask for two of these for baby gifts, or splurge and get two for yourself. It's worth it. You won't believe all the ways you'll be able to use it.
- The Fisher Price Baby Papasan Chair is comfy and soft for baby. It also has music and soothing vibrations, which Bridget loved. When she was really little, I moved this thing all over the house with me (with a Zaky tucked in on either side), and she napped happily in it with her head nicely elevated. This comes in a variety of colors and patterns.
- We had two travel-size pack-n-plays with removable bassinets for Bridget (one on the first floor and one upstairs). Lightweight and small in size (and 1/2 the price of the full-size model), these were the bomb for us! You can find space for this pack-n-play almost anywhere, and it fits through doorways and is ultra-easy to move around the house, or to pack for travel. Plus, it's dang cute. Also comes in a variety of colors and patterns.
- Once Bridget started to become interested in scooting and crawling, the superyard, which we called "The Ranch"--a set of interlocking safety gate pieces--was an essential item. We even took The Ranch on vacation (the gates fold flat). There are extension pieces you can purchase to make the superyard larger, and the shape can be modified to make a rectangle, square or hexagon/octagon (depending on the number of pieces).
Items to soothe and comfort baby:
- Music (this one by Norah Jones, this one by Chloe Agnew, or this one by Lorrie Line) that is soft and pretty for bathtime and bedtime.
- A portable CD/MP3 player is a must-have item. Bridget loved (and still loves) music of all kinds.
- Who wants flaky, itchy skin? No one! The best stuff for baby's skin (though not the least expensive): Arbonne baby wash, oil and lotion. This is the most mild, sweetest smelling baby wash out there. (The baby wash is also great as a face wash for adults or teens with sensitive skin, and makes the best soak for a pedicure. Another bonus: it does wonders for eczema.) I used the oil (light and absorbs easily) for infant massage with Bridget. She had the best skin of any of our kids as babies...and I think these products are the reason. p.s. I do not sell Arbonne products in case anyone is wondering :). You can find a rep on the website, though. You can also sign up as a consultant, pay a $35 once-a-year charge and get a nice discount (I think it is 30% off) whenever you order (without actually selling the products). A good way to go if you are planning on using these exclusively for baby's first year.
Other Baby Care Items:
For Oral Care & desensitization:
- Nuk brush (use alone, or roll in things like applesauce, yogurt, Nutrigrain bars)
- Finger brush for teeth and gums
- A good humidifier is essential. We ran one each night when Bridget slept. We also used Simply Saline on a daily basis. Her nasal passages were so tiny that she always seemed (and sounded) stuffy. These two things worked like a miracle for us.
Feeding essentials:
- A small food processor is great, but the Munchkin Food Grinder (inexpensive and entirely portable) is also awesome for making healthy, safe food for baby to eat.
- The best spoons for feeding Bridget were maroon spoons.
-We placed a free-standing, acrylic therapy mirror (portable and lightweight--like this one, or this one) on Bridget's high chair tray while she ate. (Actually, these mirrors went everywhere we went with Bridget. She loved--and still loves--to look at her own reflection.) The mirrors provide entertainment and are perfect for oral-motor skill development (including speech and learning to eat).
Books:
Books--educational books (especially by DK Publishing and Roger Priddy)--and toys for baby:
- I Can, Can You? (The cutest little book. All of the children in it have Down syndrome.)
- That's Not My... Touch & Feel series (We have That's Not My Fairy, That's Not my Kitten and That's Not My Mermaid)
- All of the DK Peekaboo! books (Bathtime Peekaboo! and Bedtime Peekaboo!are also favorites),
- Books by Proger Priddy
- Sassy developmental toys
- Fisher Price crawl-along drum (encourages crawling...it worked for Bridget...she loved trying to catch this toy as it rolled--and banging on it while it was in the open position).
- Books for Mom & Dad:
Babies with Down Syndrome: A New Parents' Guide
Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals
Items to save mom and dad's sanity:
- When Bridget was a new baby, the Zaky was a great item to have. I used it to position her in her carseat, to position her for sleeping, or to place under her head while I changed her diaper (she had reflux when she was tiny, and this made it so she was not lying flat). While it is a functional item for parents, the Zaky provides a sense of comfort for babies. It is weighted, washable and soft. Ask for two of these for baby gifts, or splurge and get two for yourself. It's worth it. You won't believe all the ways you'll be able to use it.
- The Fisher Price Baby Papasan Chair is comfy and soft for baby. It also has music and soothing vibrations, which Bridget loved. When she was really little, I moved this thing all over the house with me (with a Zaky tucked in on either side), and she napped happily in it with her head nicely elevated. This comes in a variety of colors and patterns.
- We had two travel-size pack-n-plays with removable bassinets for Bridget (one on the first floor and one upstairs). Lightweight and small in size (and 1/2 the price of the full-size model), these were the bomb for us! You can find space for this pack-n-play almost anywhere, and it fits through doorways and is ultra-easy to move around the house, or to pack for travel. Plus, it's dang cute. Also comes in a variety of colors and patterns.
- Once Bridget started to become interested in scooting and crawling, the superyard, which we called "The Ranch"--a set of interlocking safety gate pieces--was an essential item. We even took The Ranch on vacation (the gates fold flat). There are extension pieces you can purchase to make the superyard larger, and the shape can be modified to make a rectangle, square or hexagon/octagon (depending on the number of pieces).
Items to soothe and comfort baby:
- Music (this one by Norah Jones, this one by Chloe Agnew, or this one by Lorrie Line) that is soft and pretty for bathtime and bedtime.
- A portable CD/MP3 player is a must-have item. Bridget loved (and still loves) music of all kinds.
- Who wants flaky, itchy skin? No one! The best stuff for baby's skin (though not the least expensive): Arbonne baby wash, oil and lotion. This is the most mild, sweetest smelling baby wash out there. (The baby wash is also great as a face wash for adults or teens with sensitive skin, and makes the best soak for a pedicure. Another bonus: it does wonders for eczema.) I used the oil (light and absorbs easily) for infant massage with Bridget. She had the best skin of any of our kids as babies...and I think these products are the reason. p.s. I do not sell Arbonne products in case anyone is wondering :). You can find a rep on the website, though. You can also sign up as a consultant, pay a $35 once-a-year charge and get a nice discount (I think it is 30% off) whenever you order (without actually selling the products). A good way to go if you are planning on using these exclusively for baby's first year.
Other Baby Care Items:For Oral Care & desensitization:
- Nuk brush (use alone, or roll in things like applesauce, yogurt, Nutrigrain bars)
- Finger brush for teeth and gums
- A good humidifier is essential. We ran one each night when Bridget slept. We also used Simply Saline on a daily basis. Her nasal passages were so tiny that she always seemed (and sounded) stuffy. These two things worked like a miracle for us.
Feeding essentials:
- A small food processor is great, but the Munchkin Food Grinder (inexpensive and entirely portable) is also awesome for making healthy, safe food for baby to eat.
- The best spoons for feeding Bridget were maroon spoons.
-We placed a free-standing, acrylic therapy mirror (portable and lightweight--like this one, or this one) on Bridget's high chair tray while she ate. (Actually, these mirrors went everywhere we went with Bridget. She loved--and still loves--to look at her own reflection.) The mirrors provide entertainment and are perfect for oral-motor skill development (including speech and learning to eat).
Books:Books--educational books (especially by DK Publishing and Roger Priddy)--and toys for baby:
- I Can, Can You? (The cutest little book. All of the children in it have Down syndrome.)
- That's Not My... Touch & Feel series (We have That's Not My Fairy, That's Not my Kitten and That's Not My Mermaid)
- All of the DK Peekaboo! books (Bathtime Peekaboo! and Bedtime Peekaboo!are also favorites),
- Books by Proger Priddy
- Sassy developmental toys
- Fisher Price crawl-along drum (encourages crawling...it worked for Bridget...she loved trying to catch this toy as it rolled--and banging on it while it was in the open position).
- Books for Mom & Dad:
Babies with Down Syndrome: A New Parents' Guide
Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals
Tuesday, June 23, 2009
Bridget--35 Months
Bridget has made great strides in the past few months. She's investigating the world in every way she can (which is why she is now gated into our family room some of the time). Wherever she goes, she goes quickly (and quietly)! She’s curious, playful and spirited. She knows just what she wants and how to get it.
What’s new…
- More words: shirt (sounds more like dirt), dress (“dess”), kick!, hat, car, Sara (Suh!), Emmy (“Eh”), juice, doll, blanket (“ket”)
- Signing less, but still uses signs occasionally
- Walking up stairs with help
- Sniffs her own feet and says, “Ewww!”
- Has become very interested in other adults and kids
- Wants to point out her ponytails, dresses or shoes to others
- Loves to get in my closet and put my clothes over her clothes, then admire herself in the mirror
- Has successfully used the potty (for both #1 and #2). We will begin “real” potty training when we return from vacation. Bridget is proud of her accomplishments and claps for herself. She is excited about her rewards (mini M&Ms & stickers) and asks for them after she has gone. She wants to help flush the toilet and help clean her little potty chair. She also pretends to wipe and then flush the toilet paper. She signs "potty" and "potty chair".
- Loves to pretend to give massages and put on lotion
- Can roll her tongue (“hot dog bun tongue”)
- Is drinking well from a straw (she still gets some sippy cups, but we are trying to transition). Drinks thickened liquids from an open cup. (She is willing to drink thin liquids, but usually ends up getting too much).
- Had her first visit with the dentist and did well. She is good about letting us brush her teeth at home. Her teeth look healthy.
- Loves to give hugs and kisses, pats (pulls hair and bops people, too!)
- Loves to take care of her dolls
We are…
- Working on walking, balance and jumping
- Doing lots of oral-motor strengthening: bubbles, kazoo, tongue movement games
- Singing, dancing, reading, pretending with Bridget
- Playing outside (new: going to playgrounds and to the pool)
- Having Bridget point things out in books
- Counting 1-10 (books, flashcards, manipulatives)
- Stacking things
Our official transition to the city school system is scheduled for July 22, one day before her third birthday.
Vote for Leah!
Our little friend, Leah Elliott, is in the running for the top spot in the Melissa Jones Photography Fresh Face Contest, which ends on June 29. Look at this cutie pie! Please follow the link and vote for her!
Sunday, June 21, 2009
Bridget & Her Daddy--Father's Day
Bridget adores her Daddy. And he adores her.
("DAD" was both her first sign and her first word!)
Just after Bridget was born, Chris took her in his arms and
whispered to her, "We've got you, sweetie".
He promised to love her and take care of her, always.
From that moment, he has never wavered.
He cares for her tenderly, willingly,
with eyes full of wonder and a heart full of love.
("DAD" was both her first sign and her first word!)
Just after Bridget was born, Chris took her in his arms and
whispered to her, "We've got you, sweetie".
He promised to love her and take care of her, always.
From that moment, he has never wavered.
He cares for her tenderly, willingly,
with eyes full of wonder and a heart full of love.
He beams when he looks at her.
He giggles at her impishness,
marvels and her energy and curiosity, and
delights in her tenacity.
He follows her lead without question
(even when it means giving in to her requests for ice cream at 10 a.m.).
The kids and I have brainstormed and come up with
some of the things Bridget loves about her Dad.
If she could, this is what we think she would say today:
Dear Daddy,
I love you.
I always want to know where you are,
and when you are gone I miss you.
You hug me, laugh with me and like to play games.
You come to get me out of bed if mommy isn't awake yet,
and you feed me (and change me) right away.
You make my hair pretty with ponytails and braids.
You take me outside to play.
You feed me food that mommy hasn't thought to let me try.
You always know exactly what I am trying to say.
You are the best Daddy in the world,
and you're mine!
Happy Father's Day!
(To Bridget's Daddy and all the other amazing dads out there!)
Tuesday, June 16, 2009
A Visit to the Dentist
Dental care for the patient with Down syndrome can be achieved in the general practitioner's office in most instances with minor adaptations. Although this population has some unique dental care needs, few patients require special facilities in order to receive dental treatment. Adequate dental health care for persons with developmental disabilities is a major unmet health need.- From Dental Care for the Patient
with Down Syndrome
by Dr. Elizabeth S. Pilcher
I was so glad to find an explanation of the unique dental care needs and considerations specific to the patient with Ds that encouraged practitioners, parents and patients to expect comprehensive care in a traditional setting (with minor modifications, if necessary). Here's a link to Dr. Pilcher's article.
This morning Bridget had her first dental appointment, and she did great! She's been giving me a run for my money recently with her curiosity, energy and general willfulness (she's so TWO! and she woke up at 5:30 a.m. today--much earlier than usual), so I was a little concerned about how cooperative she would be with the dentist. The issue was more the waiting room than the actual exam, but that is another story all together :).
Our pediatric dentist was wonderful with her. He talked to her in just the same way he talked to our other children when they were her age. He was patient and deliberate, and knew just how to get the job done quickly and without upsetting Bridget. She sat in my lap (with her chest against mine) and he sat across from me. He leaned her head back onto his lap, which provides the best vantage point to view all the teeth.
He doesn't know Bridget at all, but he didn't seem to have pre-conceived notions about how she would behave, whether she could understand what he was saying, etc. In fact, he seemed to presume competence...which is absolutely the right way to go. Kudos to Dr. Wenger!
He explained that teeth (and gums) are a big issue in children with Down syndrome. I already knew that the teeth in people with Ds are often delayed coming in, arrive in an unpredictable order, and come in all shapes and sizes. I have not researched dental issues in-depth until just recently. I knew that I needed to pay special care to cleaning Bridget's teeth, but she hasn't had them all that long :). I figured I'd deal with other issues as they arrive, which has been my approach with most things related to Bridget having Down syndrome.
Today I learned that people with Down syndrome are especially prone to gum disease and are sometimes missing baby teeth or permanent teeth. Bridget does not have her eye teeth yet. Apparently, they may never come in. The dentist said while it is possible that they just haven't erupted yet, he thinks it is more likely that they are missing. He must have noticed the concerned look on my face, because he quickly followed by saying that it is something that can be taken care of fairly easily in an orthodontic setting. He feels that Bridget is doing great, that we are doing a good job of cleaning her teeth, and that her teeth look very healthy.
As with everything else, there is a huge range in the dental health of individuals with Ds. Proper preventative care and appropriate treatment are hugely beneficial for anyone.
We had a positive experience today, which is a huge relief...and another reason to be grateful for compassionate, skilled health care providers and another reason to never underestimate my youngest child...
Sunday, June 14, 2009
I'm Still Here/Five Years Ago Today
My tea this morning came with a message:
Regardless of the source, I needed this thought today--even if it did come attached to a teabag :).
I've been overwhelmed and tired recently. I'm attributing the feelings to the end-of-the-school-year-to-beginning-of-summer transition with stuff everywhere and five children now at home most days. Teenage and toddler dilemmas combined with constant flow to and from the pantry and refrigerator, housework, doctor's appointments, shuttling kids all over town, no reliable sitters, a traveling husband and limited contact with friends (& the outside world in general) makes daily life feel like the movie Groundhog Day (where Bill Murray lives the same day over and over). I am trying to find the energy and will to do it all. With a smile.
Today is a big day for me. Five years ago at this exact time, I was under anesthesia having brain surgery--and Chris was anxiously waiting to make sure I'd come through the surgery safely and to hear whether the surgeon was able to remove the entire tumor.
In some ways, that day seems like a lifetime ago. But it isn't hard to get right back to that place and time when every step felt wobbly, when every moment felt tentative and fragile.
Soon after the surgery, when I finally knew how it would all play out, I began having the strangest sensation. It was an unusual and powerful mixture of gratitude and anxiety that would bubble up and leave me gasping for breath.
It seemed like any time I was alone--which was only in the shower, or once in a while in the car--I couldn't stop it from happening. I kept thinking, How did that happen? How close did I come to leaving Chris and my kids without a wife and mom?
I had few symptoms, but my tumor was very large, and had displaced my brainstem. It was close to compromising my vital functions. After surgery, I was told how it could have been catastrophic, how it could have shut me down quietly and without warning. Even though the tumor is gone, I don't know if I'll ever feel safe again. And I don't think that is a bad thing.
When I start to get frustrated with all the obligations of daily life, I need the reminder that Life is also a constant flow of LOVE, not just chores :). How lucky I am to be here, to have the chance to see my children grow and to be surrounded by love. I have so many reasons to be thankful...
*This was a temporary break from regularly scheduled programming. I have several posts, which actually deal with Ds, planned for this week :). Check back if you're interested!
Life is a flow of love.
Your participation is requested.
Regardless of the source, I needed this thought today--even if it did come attached to a teabag :).
I've been overwhelmed and tired recently. I'm attributing the feelings to the end-of-the-school-year-to-beginning-of-summer transition with stuff everywhere and five children now at home most days. Teenage and toddler dilemmas combined with constant flow to and from the pantry and refrigerator, housework, doctor's appointments, shuttling kids all over town, no reliable sitters, a traveling husband and limited contact with friends (& the outside world in general) makes daily life feel like the movie Groundhog Day (where Bill Murray lives the same day over and over). I am trying to find the energy and will to do it all. With a smile.
Today is a big day for me. Five years ago at this exact time, I was under anesthesia having brain surgery--and Chris was anxiously waiting to make sure I'd come through the surgery safely and to hear whether the surgeon was able to remove the entire tumor.
In some ways, that day seems like a lifetime ago. But it isn't hard to get right back to that place and time when every step felt wobbly, when every moment felt tentative and fragile.
Soon after the surgery, when I finally knew how it would all play out, I began having the strangest sensation. It was an unusual and powerful mixture of gratitude and anxiety that would bubble up and leave me gasping for breath.
It seemed like any time I was alone--which was only in the shower, or once in a while in the car--I couldn't stop it from happening. I kept thinking, How did that happen? How close did I come to leaving Chris and my kids without a wife and mom?
I had few symptoms, but my tumor was very large, and had displaced my brainstem. It was close to compromising my vital functions. After surgery, I was told how it could have been catastrophic, how it could have shut me down quietly and without warning. Even though the tumor is gone, I don't know if I'll ever feel safe again. And I don't think that is a bad thing.
When I start to get frustrated with all the obligations of daily life, I need the reminder that Life is also a constant flow of LOVE, not just chores :). How lucky I am to be here, to have the chance to see my children grow and to be surrounded by love. I have so many reasons to be thankful...
*I found a file on my computer today: Acoustic Neuroma 2004. Here is an excerpt of an essay I wrote just following the ordeal. It is called, Can a Brain Tumor be a Gift? (Yes)...
It was a busy day at the ENT’s office and I waited two hours to see him to find out what was on my scan. He was straightforward and kind. “I’m sorry to tell you this. You have a sizeable tumor and unfortunately surgery is in your near future."
But it’s just time for school to be out and we have so many plans, I thought. He must have read my mind. Nodding sympathetically, he said, “Your summer is going to be a little different than you had planned. I do not do these surgeries, but I have already talked to an outstanding neurosurgeon about your case. Someone from her office will be in touch with you this afternoon.”
I walked out to my car feeling hungry and numb. I called my sister-in-law knowing she was waiting for my call. I didn’t want to scare her, but I didn’t have a lot to reassure her of, either. I think I’m going to need some help was all I could think of to say. It was the understatement of my life. I need crazy help. I need someone to step into my life and take care of my home and my children for a while-- and by the way-- I also need someone to save my life.
One week after finding out that I needed surgery, Chris and I were meeting with the Columbus-based neurosurgeon Dr. Martyn had recommended. We had talked to several people we know in the Columbus medical community who also assured us that this particular surgeon was very, very good. She was calm, smart and blunt. She tried to prepare us for what was ahead.
In our meeting I learned that not only could my hearing not be saved (I still thought that was possible), but also I heard very clearly that the procedure might leave me permanently handicapped or disfigured. What? I was not prepared for this.
The detailed surgery could take anywhere from 8-18 hours depending on how difficult the tumor was to remove, she said. I would be hospitalized for 5 days to 2 weeks, followed by months of recovery. I would probably need physical therapy of some kind. Because of the delicate location of acoustic tumors and the necessary manipulation during surgery, neurological damage could occur in the course of surgery, she explained. The way the brain is wired, the nerves are all very close together, which complicates things greatly and makes the operation risky as well as likely to produce complications and other undesirable outcomes. Acoustic tumors also often contact the nerves that go to the eye muscles, the face, the mouth, and the throat, face and tongue. A problem with these nerves could cause facial palsy, vision and other eye problems, weakness of the shoulder, weakness of the voice, taste disturbances or even difficulty swallowing--and these problems could be permanent.
I didn’t have many of the usual symptoms, which are: unsteadiness, double vision, facial numbness, ringing in the ears, fullness in the ear and headaches. I only had minor hearing loss. Usually, the rule is the bigger the tumor, the higher the chance of complications. I didn’t focus on this. I thought, I’m young and healthy with few symptoms. I will do well with this. I have to.
I was told that after the procedure I would have a hard time with dizziness, balance, and with focusing my eyes, at least for a time. If I had trouble swallowing, I might need to be tube-fed, so I wouldn’t choke. I may even need a tracheotomy to help me breathe. Further surgeries might be necessary.
It wasn't likely, but I could die during surgery. Surgery and anesthesia always pose potential problems, but since acoustic tumors are located adjacent to the vital centers of the brain responsible for control of breathing, heart rate and blood pressure, I was told that the brain itself could also be injured during the removal of the tumor.
If I made it through the surgery safely, I could experience a multitude of post-surgery problems, which included the possibility of lingering taste disturbances, ringing in the ears, double vision and severe, persistent headaches. I was told I might need to wear a patch over my eye if I developed eye complications. I am a writer, and I love to read--I need my sight. Please don’t let anything happen to my eyes, I thought.
Some of the worst news, though, was that I could experience full or partial facial paralysis, which could be temporary or permanent--and would mean that I might never be able to smile again. I might never be able to smile? You have got to be kidding. This cannot be happening. (I had my friend take pictures of the kids and me before my surgery, not knowing if I would ever look or feel the same.) I thought, I will do whatever it takes, rest, physical therapy--whatever--to return to myself after this thing is gone.
I listened and quietly cried. This was a lot of information to process. My thoughts went to my husband and kids. I’m so sorry. I’m so sorry to do this to you, was all I could think. I went home and prepared to make some of the hardest phone calls I’ve ever made. I didn’t even tell my parents that I was having the MRI. How was I going to spring it on them that I had a brain tumor?****
Two weeks ago, Chris and I traveled from Columbus, Ohio to The House Ear Clinic in Los Angeles, California so that I could have surgery to remove the tumor that was compressing my brainstem. After quick, but very thorough research, Chris found the best care for me in the country, maybe even the world. He truly felt we needed experts. He found Dr. Rick Friedman and Dr. William Hitselberger, who performed the operation at St. Vincent’s Medical Center in Los Angeles. You will not find two men more skilled, humble or compassionate.
My surgical team did exactly what they promised. They did their part perfectly and removed the tumor while protecting my adjacent nerve function. (And the entire operation took less than 4 hours!) They left me otherwise as they found me. You thank someone for a ham sandwich. How do you show your gratitude when someone saves your life? Money…medals…steaks… jewels? Nothing comes close.
I don’t know if it was divine intervention, the very best doctors, the power of prayer and positive thinking, luck--or a combination of these things--but I made it through the surgery with the best possible outcome.
Just ten days ago, I had brain surgery. I am currently recovering by the beach in Santa Monica, California. Yesterday I ate orange pancakes and blueberries for breakfast, sang “Happy Birthday” to my two-year-old daughter over the phone, and sat by a pool overlooking the ocean holding hands with my husband. I am going home in three days.
In a time when the state of the world is uncertain, sometimes scary and often sad, I’ve been reminded that people are inherently good. So many people have offered help to me and my family, including many who don’t even know us personally, but have heard of our situation through friends. I have been brought to tears by the generosity of others. All I have been able to think is, How am I ever going to repay all this goodness? I am going to be gracious, kind and forgiving. I am going to share my story. I am going to value life and love like it’s my last day on earth.
I am missing a little hair and am stitched, stapled, bruised and tired--but alive, healing and very grateful. I can’t hear out of my right ear anymore (this doesn’t bother me at all and I can still hear perfectly out of my left). The right side of my face (by my cheek and the corner of my mouth) is a little numb, and my right eye doesn’t tear as well as my left eye. My right eyebrow seems a little lower than it was before the surgery and I have a tiny bit of swelling still by my right ear. My eyes get tired by the end of the day. I still feel a bit tentative about moving in tight spaces, or being around lots of people, but I am only 10 days into my recovery.
I have noticed improvements every day since the surgery, and I know these issues are part of recovery and will be gone shortly. I am deaf in one ear, but otherwise almost exactly the same (of course I am forever changed by this experience, but I will return to life as I was before, which is what I wanted).
I ache to see and hold my children. I want to pack lunches, shop at Target, and wash the windows. I want to take family vacations and celebrate birthdays, holidays and other special occasions. I am done holding my breath, waiting to see if I’m going to be okay. I am fine--more than fine. And I’m ready to get back to my life.
Today I feel great. It's hard to believe all that has happened in the last month--it has been a whirlwind filled with some of the darkest and some of the sweetest times I've ever known. I have had the best medical care, the most amazing, life-affirming experience, and a wonderful time in California with my husband.
I am grateful, happy and strong and my body is healing well. I have no pain, and I am feeling more energetic with each moment that passes. By the end of the summer, this will be behind me. I will be completely recovered and able to care for my busy, sweet young family once again.
What I've learned…
People have asked, "Were you freaking out when they told you?" My answer: It was like my world had been filleted and laid out in front of me for me to understand. Usually, when I try to understand something, I look at all the angles and immerse myself in possibilities. I know this is how I work. I have to consider everything. This time was very different, welcome--actually easy. Something was saying:
This is just another challenge~~a stage of becoming.
It is one of many challenges you have faced.
You will face more and you will get through them, too.
You must accept this.
I did. It was all incredibly clear. There was no time for the complicated and the clarity was a gift. I've embraced this because I had to--I wasn't given a choice in the matter. What I could choose was how I would respond. I began to think and repeated to myself:
I have everything. I am safe. I am loved. I am not alone. Everything I need to get through this-- it's all right here. I am strong, and I am going to lean on the strengths and spirits of others.
I envisioned only the positive. I chose to feel love, warmth, peace and all the goodness in the world. I learned to be at peace you have to admit and truly believe "I have it all."
For me, this is:Family.
Good friends.
A sense of self.
A sense of humor.
Faith.
Joy.
Hope.
Peace.
Wonder.
Contentment.
Love...
Life is beautiful and life is fragile. Surround yourself with things you love today and take a moment to give thanks. I know I am....
*This was a temporary break from regularly scheduled programming. I have several posts, which actually deal with Ds, planned for this week :). Check back if you're interested!
Monday, June 01, 2009
Exciting Times Over Here
If you look closely at the picture below, you can see that there are six stickers on Bridget's potty, which means that she has successfully used the potty as man
y times :)!
We are not officially potty training yet, but I thought I would start experimenting with Bridget. She started taking off wet diapers on her own awhile ago. She kept wanting to put them on the kitchen counter, so I make sure she is always wearing a diaper cover of some sort.
When she began doing that, I also made a note to myself that being unhappy in dirty diapers was a potty training readiness cue. I bought her a new potty that looked like it offered back support and would be comfortable for her and easy for me to clean.
When I put the potty in our downstairs bathroom, I started to get nervous. I began to think about how and when I should truly begin trying to train her and whether potty training would be more difficult with her than with the older kids. Like everyone else, I've heard that children with Down syndrome tend train later than typical kids, and I've never trained a kid with Ds before. I didn't want to screw it up by starting before she was ready, or by being inconsistent. Chrystal wondered about this with her daughter, too (find that here).
We began to ask Bridget to just sit on the potty. The first time she did it, she said "tssss", stood up and clapped. Hmmm, I thought. A few weeks ago, Bridget took a tiny piece of tissue and was dabbing it on the front of her diaper (pretending to wipe). Again--earth to mom--time to start training her.
I found a Sesame Street Potty Book at Discount Drug Mart one day recently (you can also get it at Borders, or on Amazon) and couldn't decide if it was worth the $3, since Bridget still only watches Hi-5, and since some of it seemed difficult for her to understand. In the end, the coloring pages and stickers were too cute to pass up, and I thought it was worth a try (even later down the road).
I also considered whether I should offer her some type of sweet reward. Bridget doesn't really eat sweets, except for ice cream on occasion. She also wasn't chewing effectively (until recently), so I second-guessed giving her a treat as a reward. I ended up settling on mini-m&ms, which fit the bill on all accounts, and which I bought the same day I bought the book.
So I had supplies, but how would I do it? Put her in underwear, fill her with fluids and put her on the potty every 15 minutes like I did with everyone else? Let her pick out stickers to put on the potty each time she goes, and reward her with m&ms? Would Bridget be able to tell me she needed to go? Would she even care about rewards? With our older kids, the routine worked like a charm, and they all trained in a weekend. But what to expect with Miss Bridget?
I should know better. I should know not to assume that anything is beyond her comprehension, and that she is more like the rest of the kids than she is different.
I should also know by now to follow her lead. She leads well :).
I am planning on getting serious in a few weeks, when it is consistently warm and when can be home for several days in a row and just focus on potty training.
But, as you can see from the above photo, we've already started having success--and I have some answers to my initial questions. I taught her the signs for "potty" and "potty chair", which she is using proudly at this point after she goes. My goal is to help her understand when she needs to go and use one of these signs to alert me--she is already saying "poop" after she's gone, so she might also be able to express her needs verbally. We'll go with whatever works for her. (I'd rather she say or sign "potty" than shout "POOP!" when she needs to go, but that's my own hang-up :).)
She loves the stickers (she points to which one she wants, I take it off the page and she puts it on the potty). She loves the mini m&ms and is already asking for them after she goes by saying something that sounds more like "luh-muh-nuh-muh-nuh", but I know exactly what she means.
She's so excited about what she has produced that she looks into the potty and waves. She waits for me to dump the contents into the big toilet, and then she flushes it with a giggle. I have even caught her trying to wipe the potty clean with toilet paper (she's seen me using Clorox wipes on it a few times).
Her lesson is my lesson. With her, I should always presume competence. I should anticipate nothing other than to be surprised with what she accomplishes, when and how.
Looks like she's training me well...
y times :)!We are not officially potty training yet, but I thought I would start experimenting with Bridget. She started taking off wet diapers on her own awhile ago. She kept wanting to put them on the kitchen counter, so I make sure she is always wearing a diaper cover of some sort.
When she began doing that, I also made a note to myself that being unhappy in dirty diapers was a potty training readiness cue. I bought her a new potty that looked like it offered back support and would be comfortable for her and easy for me to clean.
When I put the potty in our downstairs bathroom, I started to get nervous. I began to think about how and when I should truly begin trying to train her and whether potty training would be more difficult with her than with the older kids. Like everyone else, I've heard that children with Down syndrome tend train later than typical kids, and I've never trained a kid with Ds before. I didn't want to screw it up by starting before she was ready, or by being inconsistent. Chrystal wondered about this with her daughter, too (find that here).
We began to ask Bridget to just sit on the potty. The first time she did it, she said "tssss", stood up and clapped. Hmmm, I thought. A few weeks ago, Bridget took a tiny piece of tissue and was dabbing it on the front of her diaper (pretending to wipe). Again--earth to mom--time to start training her.
I found a Sesame Street Potty Book at Discount Drug Mart one day recently (you can also get it at Borders, or on Amazon) and couldn't decide if it was worth the $3, since Bridget still only watches Hi-5, and since some of it seemed difficult for her to understand. In the end, the coloring pages and stickers were too cute to pass up, and I thought it was worth a try (even later down the road).
I also considered whether I should offer her some type of sweet reward. Bridget doesn't really eat sweets, except for ice cream on occasion. She also wasn't chewing effectively (until recently), so I second-guessed giving her a treat as a reward. I ended up settling on mini-m&ms, which fit the bill on all accounts, and which I bought the same day I bought the book.
So I had supplies, but how would I do it? Put her in underwear, fill her with fluids and put her on the potty every 15 minutes like I did with everyone else? Let her pick out stickers to put on the potty each time she goes, and reward her with m&ms? Would Bridget be able to tell me she needed to go? Would she even care about rewards? With our older kids, the routine worked like a charm, and they all trained in a weekend. But what to expect with Miss Bridget?
I should know better. I should know not to assume that anything is beyond her comprehension, and that she is more like the rest of the kids than she is different.
I should also know by now to follow her lead. She leads well :).
I am planning on getting serious in a few weeks, when it is consistently warm and when can be home for several days in a row and just focus on potty training.
But, as you can see from the above photo, we've already started having success--and I have some answers to my initial questions. I taught her the signs for "potty" and "potty chair", which she is using proudly at this point after she goes. My goal is to help her understand when she needs to go and use one of these signs to alert me--she is already saying "poop" after she's gone, so she might also be able to express her needs verbally. We'll go with whatever works for her. (I'd rather she say or sign "potty" than shout "POOP!" when she needs to go, but that's my own hang-up :).)
She loves the stickers (she points to which one she wants, I take it off the page and she puts it on the potty). She loves the mini m&ms and is already asking for them after she goes by saying something that sounds more like "luh-muh-nuh-muh-nuh", but I know exactly what she means.
She's so excited about what she has produced that she looks into the potty and waves. She waits for me to dump the contents into the big toilet, and then she flushes it with a giggle. I have even caught her trying to wipe the potty clean with toilet paper (she's seen me using Clorox wipes on it a few times).
Her lesson is my lesson. With her, I should always presume competence. I should anticipate nothing other than to be surprised with what she accomplishes, when and how.
Looks like she's training me well...
Thursday, May 28, 2009
Miss Congeniality
Today Bridget did nothing to dispel the stereotypes that people with Down syndrome are extra loving and always happy.
We went to Emmy's "First Grade Class Songs" at the elementary school this afternoon, and Bridget reached out to every person who approached us. Literally. Even if they were not coming to talk to us, but happened to be walking or sitting nearby, our little Miss Congeniality reached out with both arms and hopped into their arms. Men, women, children...she didn't discriminate. Anyone who appeared, in any way, willing to hold her got the chance. And it didn't stop there. She hugged and patted, kissed, blew kisses, played peekaboo (in a very coy way, always leaving a little room between her fingers to make sure the person was still watching).
When we were trying to leave, I put Bridget down so she could walk out. I turned around to see her sitting happily in a lady's lap (and I had never seen the woman before...thank goodness she was so willing to indulge my child). When I reached out to Bridget and told her it was time for us to go home, she patted the woman's leg, looked me squarely in the eye and said, "No". She was the life of the party. I am imagining next fall when she walks onto the school grounds again for her first year of preschool. All I can say is, they have no idea what they're in for :).
You'd never know it from the start of this post, but Miss Congeniality has been a bit of a rascal recently. I have been seriously considering getting out my markers and posterboard to make a "TWO-YEAR-OLD FOR SALE" yard sign. She pinches (usually with a grin, but still...it hurts!), and drops and flops with her bottom in the air (or starts coughing) when she doesn't get her way. She likes to "hide" from me, push the buttons on all remote controls or small appliances within reach, and "sort" clean laundry. She thinks it is incredibly fun to shred toilet paper and even more fun to watch mommy clean it up. She's a little bit demanding, full of drama and into absolutely everything. And just now, Sara (who was supposed to be watching Bridget while I write this) came around the corner and said, "I just can't watch her any more! She's hurting me!" So there's proof: she is not always happy and loving.
With that said, she is generally a very sweet little girl. (She is also two. For sure.) We (parents of children with Down syndrome) tend to get frustrated, though, with the suggestion that all people with Ds are (fill in the blank). Stereotypes of any kind are hurtful in their generalization--in failing to see the person as an individual. But is being happy and/or loving such a bad thing? People with Ds are often less inhibited with their affection than typical people. Not always, but often. And that's part of what makes people with Down syndrome like magnets-- others are drawn to them. Who doesn't want to feel wanted?
On the way home this afternoon, Chris and I were talking about our youngest daughter's behavior today, and how other people reacted to her. (She hasn't always gone so easily to others, but has started to do it a lot recently. She does watch to make sure mom or dad is close by, and she points us out to the person holding her.) People were genuinely happy to hold Bridget this afternoon and really seemed to enjoy her social confidence and affection. I think she might have stolen a few hearts. She definitely made people smile.
We were talking about the stereotype ("they"--people with Ds--are always so loving and happy). "Well, there are worse things to be. That's for sure," Chris said. He said "being happy" (finding contentment and a sense of peace in Life) is one of his greatest wishes for all of his kids, now and in the future. We've often talked about how it doesn't really matter to us what they do, but how our hope is that they each stay healthy, and happy, and contribute in some positive way to the world.
Some people spend their whole life trying to find happiness. If this comes naturally, even easily, to Bridget, then all the better. There are sure to be other things that take more work for her. Whether it is somehow linked to the extra chromosome or not, this one thing--the innate understanding of how to be happy and make others happy--it is a gift.
We went to Emmy's "First Grade Class Songs" at the elementary school this afternoon, and Bridget reached out to every person who approached us. Literally. Even if they were not coming to talk to us, but happened to be walking or sitting nearby, our little Miss Congeniality reached out with both arms and hopped into their arms. Men, women, children...she didn't discriminate. Anyone who appeared, in any way, willing to hold her got the chance. And it didn't stop there. She hugged and patted, kissed, blew kisses, played peekaboo (in a very coy way, always leaving a little room between her fingers to make sure the person was still watching).
When we were trying to leave, I put Bridget down so she could walk out. I turned around to see her sitting happily in a lady's lap (and I had never seen the woman before...thank goodness she was so willing to indulge my child). When I reached out to Bridget and told her it was time for us to go home, she patted the woman's leg, looked me squarely in the eye and said, "No". She was the life of the party. I am imagining next fall when she walks onto the school grounds again for her first year of preschool. All I can say is, they have no idea what they're in for :).
You'd never know it from the start of this post, but Miss Congeniality has been a bit of a rascal recently. I have been seriously considering getting out my markers and posterboard to make a "TWO-YEAR-OLD FOR SALE" yard sign. She pinches (usually with a grin, but still...it hurts!), and drops and flops with her bottom in the air (or starts coughing) when she doesn't get her way. She likes to "hide" from me, push the buttons on all remote controls or small appliances within reach, and "sort" clean laundry. She thinks it is incredibly fun to shred toilet paper and even more fun to watch mommy clean it up. She's a little bit demanding, full of drama and into absolutely everything. And just now, Sara (who was supposed to be watching Bridget while I write this) came around the corner and said, "I just can't watch her any more! She's hurting me!" So there's proof: she is not always happy and loving.
With that said, she is generally a very sweet little girl. (She is also two. For sure.) We (parents of children with Down syndrome) tend to get frustrated, though, with the suggestion that all people with Ds are (fill in the blank). Stereotypes of any kind are hurtful in their generalization--in failing to see the person as an individual. But is being happy and/or loving such a bad thing? People with Ds are often less inhibited with their affection than typical people. Not always, but often. And that's part of what makes people with Down syndrome like magnets-- others are drawn to them. Who doesn't want to feel wanted?
On the way home this afternoon, Chris and I were talking about our youngest daughter's behavior today, and how other people reacted to her. (She hasn't always gone so easily to others, but has started to do it a lot recently. She does watch to make sure mom or dad is close by, and she points us out to the person holding her.) People were genuinely happy to hold Bridget this afternoon and really seemed to enjoy her social confidence and affection. I think she might have stolen a few hearts. She definitely made people smile.
We were talking about the stereotype ("they"--people with Ds--are always so loving and happy). "Well, there are worse things to be. That's for sure," Chris said. He said "being happy" (finding contentment and a sense of peace in Life) is one of his greatest wishes for all of his kids, now and in the future. We've often talked about how it doesn't really matter to us what they do, but how our hope is that they each stay healthy, and happy, and contribute in some positive way to the world.
Some people spend their whole life trying to find happiness. If this comes naturally, even easily, to Bridget, then all the better. There are sure to be other things that take more work for her. Whether it is somehow linked to the extra chromosome or not, this one thing--the innate understanding of how to be happy and make others happy--it is a gift.
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