The paperback version of The Liar's Diary by Centerville author Patry Francis went on sale yesterday. You can buy this book at any bookstore or on www.amazon.com.
Patry is undergoing treatment for an aggressive form of cancer and can use all the support she can get in promoting her book. Usually when someone's book comes out, they go on tour around the country to promote it, but unfortunately because of Patry's illness she is unable to do that. So spread the word!
The novel is about a woman (middle class mom with a job at a school) who befriends an eccentric new woman in town. It is a very poignant and interesting portrayal of their relationship and how this one new friend changes her life forever.
Enjoy!
Kelli
Wednesday, January 30, 2008
Sunday, January 20, 2008
Satisfaction
You know what it's like after you finish a good novel? You sit back and savor the moment and imagine what the characters went on to pursue. 
PS - Now I have a new author to read! I'm so excited she has at least three other books for me to get caught up on!
I am a person that 90% of the time is in the middle of reading/writing a book. If I'm not reading one, I'm writing one. . .and I can't be reading one when I'm in the middle of writing. I have to completely finish writing before I can start reading again.
A few months ago. . . September probably. . .I had no interest in doing either. I couldn't find a book at the library that I could make it through the first 2 chapters. I searched the tables at the bookstore for something. . .anything that would spark my interest. And I had no ideas to write about. It was a funk you could say and I didn't like it.
I asked for a book for Christmas. . .Rhett Butler's People by Donald McCaig. Tom got it for me and within 4 days I had finished the over 500 page novel. For those who know me well know I am a BIG fan of Gone with the Wind - the movie and the book. Rhett Butler's People was fascinating. I loved how he delved into the world of Rhett Butler and expanded the story to learn more about his life. I would definitely recommend it if you have more than a passing interest in Gone with the Wind.
But then what? I had finished the book and wondered if I was back to where I started. Would I be able to recreate that feeling again? Where would I find another book that could make me happy?
Something suddenly struck me. I have a book shelf full of books that I read at one time and were good enough to keep and not donate to the church rummage sale. Somewhere on that shelf maybe I could find something that I wanted to reread. After some searching I came up with my all time favorite book. One that I had already read TWICE. Maybe a third time wouldn't be so bad. It was a book by LaVyrle Spencer titled Bittersweet. I love Lavyrle Spencer's writing and her characters. Sure, she writes romance, but they are not the torrid love affairs of a typical romance. The characters are believable, they have spirit and they are not perfect. There are always complicated family dynamics to work out and Bittersweet was a wonderful read even the third time. So I delved into her other books and so far have reread three of them.
Last week, Kylie and I were in the library and I was searching again. Maybe something would jump out at me that I hadn't seen before. Maybe a new author I hadn't investigated yet. Usually I find an author that I like, read everything they've written and then move onto someone else. I saw typical romance novels, chick lit (don't get me started on chick lit. . .I get so sick of women who wear Malono Blanicks to work in NYC and take their lunch breaks shopping at Barney's. Sure it's nice to fantisize - and I have read several with some enjoyment, but who really lives like that??? Certainly not a middle class mom of two on Cape Cod. Not to mention do I even LIKE these women?). Anyway, Kylie pulls a book off the shelf and says, "how bout this one, mommy?" Of course she would choose the image of a beach with the chairs. . .after all she's my beach bum. I scanned the back quickly. . .story of friendships. I read the first paragraph and shrugged. "Sure, I'll try it."
That was Tuesday. Today I finished Saving Graces by Patricia Gaffney and I can't tell you how much I enjoyed it. It's a story of 4 friends who have a little group. . .they call themselves the "Saving Graces." One has cancer, one is married to a real monster, one has fertility problems and the fourth is single and wants to quit her job and become a novelist. I found myself racing to the chapters where the fourth friend (writer) was speaking and all in all really enjoyed reading it. It makes ME want to have a group like that. In a way we do. I have a group of friends here on the Cape (you know who you are) who have tried to do the group thing before. . .a monthly dinner out/couples dinner/game night/dance party/night out. . .we've done them all. The only thing we haven't done is made it a priority to be consistent.
I don't go out in the evenings a lot. Tom's hours from late spring through November keep him out of the house until at least the kids go to bed and in the winter when he is home in the evenings I actually like (GASP!) to hang out with him at home. So I don't go to many meetings and I have dropped out of a lot of groups and committees because of it. I hesitate to join anything new because I just don't want to commit to having to be out very much. If I do show up for a night out and I've actually gotten a babysitter to do so, or left Tom at home alone it means I must REALLY like you or think the meeting is important. This is how I think of my group of friends here. If we made it a priority to get together once a month for something whether it be game night or a book club, I would be there! So girls. . .how bout it? How about we bury all the excuses and make it a priority to get together. Let's make dinner together, drink wine, talk about anything and everything and just hang out. We need each other and we need to treasure the gift of friendship that we have.
This book made me also think about friendships lost. . .or instead of thinking of them as lost, maybe as put on hold for awhile. I have a few far away friends who luckily I get to see when I go back to Kansas, but there are those friends who have also moved away from Kansas and I only get the occasional email or Christmas card from. Oh, maybe I know they had another baby or they are moving to another house. . .but I don't really know how they are doing. One of these friends I miss most of all is Michelle. I miss hearing her call me "beachtowel" and watching her curl up on the couch with her monster plate of pasta. I often think what our friendship would be like now. . .her married with two boys. We'd drink wine instead of Bud Light and talk about our kids and wonderfully stable husbands instead of about (insert name) Charley/Charlie/Phil/Phil/Phil/George/Damon (was that his name?)/Jesse/Steve/Aaron/Barack (not Obama)/Sean/Chad, etc. . . (I'm sure I forgot a few). I miss the DRAMA that was so important to us then and the crazy nights and the Ranch. Someday, Michelle ma belle, we will hang out again. . .
In the meantime, we need a girls' club! Who's in???
PS - Now I have a new author to read! I'm so excited she has at least three other books for me to get caught up on!
Friday, January 18, 2008
The Liar's Diary
Recently, I have seen the word cancer far too often. My best friend Kim, successfully battled Hodgkin's with a long, difficult regimen of chemo and radiation. My father in law, Roger got the diagnosis of cancer last spring and spent the remainder of the year undergoing surgeries, chemo and radiation. He is now doing well, but still suffers side effects of the treatments. Then my father was diagnosed in November and is STILL undergoing testing. Today is hopefully the last and final day of testing. Do we hope for a answer finally? Well, that is a bit difficult to say. You don't want them to find anything, but then again you KNOW it's there somewhere and in order to treat it, it must be found.
I should mention too that because of how cancer has touched our lives this year, Tom ran a promotion at the studio at Christmas time to raise money for the Dana Farber Cancer Institute. Over $500 was raised for this worthy cause.
In the midst of this, I wrote a book about a family who is dealing with a cancer diagnosis. This was before my dad was diagnosed and was partly inspired by Kim and my father in law. As irony would have it, it's about a woman who lives on the east coast and has a successful career and gets a call from her sister telling her that her mother is sick. I got that call too after the book was written. My mom was sick as well. . .with a brain malformation (NOT cancer), while she was having brain surgery my dad was admitted to the hospital and that's when the cancer was found. That's where the parallels end. I do not have to deal with the demons that my character Anne does. She came from an abusive childhood and had to go through a lot of forgiveness before she could really help her mother. My childhood was far from that. (Ok, ok, so I did grow up next to three rowdy boys when we lived out in the country and we had many adventures. . .but THAT'S where the parallels end!).
As I was surfing my favorite blogs one day, I ran across a blog from a local writer, Patry Francis - author of the Liar's Diary - whom I have corresponded with in the past. I was upset and shocked to see that she was diagnosed with cancer a few months ago. She is still recovering from surgery and had a recent doctor's appointment. Her blog postings always intrigue and fascinate me, probably because she is such a wonderful author, but also because she has an amazing insight into a writer's mind. As I was reading her posting about waiting in the dreary doctor's office and her grandson lighting up the quiet room, I was struck with another irony. This is what I wrote about. . .a child bringing hope and life to a dismal setting. That parallel inspired me to contact her again and in doing so, I have now learned of a campaign to help her. Since she has always been so gracious to give me advice and respond to my emails, it's the least I can do.
I should mention too that because of how cancer has touched our lives this year, Tom ran a promotion at the studio at Christmas time to raise money for the Dana Farber Cancer Institute. Over $500 was raised for this worthy cause.
In the midst of this, I wrote a book about a family who is dealing with a cancer diagnosis. This was before my dad was diagnosed and was partly inspired by Kim and my father in law. As irony would have it, it's about a woman who lives on the east coast and has a successful career and gets a call from her sister telling her that her mother is sick. I got that call too after the book was written. My mom was sick as well. . .with a brain malformation (NOT cancer), while she was having brain surgery my dad was admitted to the hospital and that's when the cancer was found. That's where the parallels end. I do not have to deal with the demons that my character Anne does. She came from an abusive childhood and had to go through a lot of forgiveness before she could really help her mother. My childhood was far from that. (Ok, ok, so I did grow up next to three rowdy boys when we lived out in the country and we had many adventures. . .but THAT'S where the parallels end!).
As I was surfing my favorite blogs one day, I ran across a blog from a local writer, Patry Francis - author of the Liar's Diary - whom I have corresponded with in the past. I was upset and shocked to see that she was diagnosed with cancer a few months ago. She is still recovering from surgery and had a recent doctor's appointment. Her blog postings always intrigue and fascinate me, probably because she is such a wonderful author, but also because she has an amazing insight into a writer's mind. As I was reading her posting about waiting in the dreary doctor's office and her grandson lighting up the quiet room, I was struck with another irony. This is what I wrote about. . .a child bringing hope and life to a dismal setting. That parallel inspired me to contact her again and in doing so, I have now learned of a campaign to help her. Since she has always been so gracious to give me advice and respond to my emails, it's the least I can do.
Patry has developed a strong and wonderful circle of friends who are rallying around in her in support. On January 29th, her book, The Liar's Diary comes out in paperback. On that day writers from around the country will be promoting her sales. On the 29th I will be doing the same. . .today is just a preview. For more information about this promotion you can see it described on Litpark and even sign up to help promote it yourself.
The Liar's Diary is a powerful and poignant book that I couldn't put down when I read it. If you enjoy my novels you will enjoy her book. She is an amazing writer who was one day where I am now. . .wishing and hoping for success. Now she has success, but she also has an illness that we as writers can't cure. . .but we can sure write about it and get the word out.
Friday, January 11, 2008
More photos of our trip and Thanks for the support
I must have sounded really stressed and frustrated in my last blog entry because I have gotten tons of wonderful emails and phone calls from friends and family offering words of encouragement. Yes, I was stressed at the moment I wrote that! But, writing it and getting it all out helps me immensely. It kind of helps me stop thinking about it because my mind is swirling with the thoughts. Once I put all my thoughts in order and down on paper, I tend to stop dwelling on them as much. It's the same as when I'm inspired to write a book. I need to get it out and when I do I feel much better!
I know my girls are wonderful and beautiful. I see that in them everyday. I hate to see them struggle with things but I think it bothers me more than them. They are so strong and confident. I am very proud of them! Kylie has recently started reading Dick and Jane and Melanie is doing awesome with her math and reading, not to mention I am amazed daily by her kindness and helpfulness around the house and with her sister. She seems really grown up lately.
And I'm excited that I now may have a solution to my swallowing difficulties. The comment from Grace in my previous post about applesauce really worked (at least one time anyway). And I have an appointment set up with my primary doctor next Wednesday and have already written down everything I need to tell him (so I don't have to think about it) AND, Melanie's pediatrician called out of the blue to set up the MRI of the spine. . .that was unexpected. I guess the neurosurgeon called him right away and had him order the MRI even though we kind of left it up in the air as to whether we were going to do it or not.
So, see things are looking up already! We just need to take it one day at a time.
Tom took some separate photos of our trip to New York and Pennsylvania. Here are a few...
The World Trade Center - this is the view from inside the subway terminal of the "hole" that used to be the World Trade Center. Very sobering and dramatic.
Tom took some separate photos of our trip to New York and Pennsylvania. Here are a few...
The World Trade Center - this is the view from inside the subway terminal of the "hole" that used to be the World Trade Center. Very sobering and dramatic.
Here's a photo of us at the American Girl Place for Brunch:
Here is Janet reading to the kids Christmas Eve:
The house all lit up and our stockings and tree:
The purple Horse quilt Janet made for Melanie and opening of the Wii!
And here are some family photos:
Tuesday, January 8, 2008
Patience with Shades of Grey
I have a theory. God finds our weaknesses and puts us on a life track to combat these weaknesses. At least that’s how it has been for me.
I’m not good with being in limbo. It makes me anxious, irritable and nervous. Selling a house was torture. . .did they like it? Are they going to call with an offer? I would jump every time the phone rang for the 7 months the house was on the market.
I also do not have any patience. None. Zero. Zilch. Being pregnant was the longest nine months of my life. What would my child look like? Was she going to be a boy or a girl (what do you mean you can’t tell on the ultrasound????? This left me in tears). Then with my second child, going into labor at 32 weeks, then having constant contractions for the next 5 weeks while in the hospital and on bedrest was like God punishing me for not being a patient person. It had to be my fault. My poor husband. Did he realize he married someone with so little patience?
My children are so well behaved that luckily my patience isn’t tested often. I’ve also learned to take a deep breath and count to three (yes only three - I don't have the time to make it to 10!) when I’m feeling impatient. Why is my foot tapping? Why are my fingers drumming on the table? That’s my patience finding its way out of my body in an involuntary way.
I also know too much for my own good. I remember in OT school as we learned about the hundreds of different illnesses, congenital deformities and developmental delays that could happen to our children, wondering how any child could end up “normal.” We also joked amongst friends that irony will probably have our own children suffering from some of these issues.
Of my five closest OT friends (the Fab Five we called ourselves), between us we now have 10 kids. Eight of our children are completely normal. The two who have had delays and difficulties are my own. How could that be? My husband is athletic and intelligent. No history of obvious delays in his past. I’m not athletic, but I was always ahead of my peers in school work. We walked on time, talked on time and had a completely normal childhood. Why are BOTH of our children suffering with delays?????
First is Melanie. She seemed to develop normally for the first few months of her life, other than a strange pupil that was larger than the other resulting in a trip to Boston for an MRI at three months of age, then some funky positioning at five months old sent us back to the neurologist who found her to be “just fine.” But she didn’t crawl until after a year old and walking wasn’t until 16 months and even then she was soooo fearful of falling. Everything else came late too. The doctors said not to worry, she’s still young but we can have her seen by early intervention. Early intervention ended up working more on her speech than gross motor skills. Once she hit three years old she no longer qualified for early intervention and the doctor suggested to start physical therapy.
The PT worked on her balance, stairs, tricycle riding, etc. . .When I saw her evaluation form I about fell off my chair. Hypotonia was the diagnosis the PT had put down for reimbursement from the insurance company? Hypotonia? Was Melanie hypotonic? How could I have missed that? If it’s hypotonia doesn’t that mean there is a neurological component to her difficulties? I ran it past the PT. “Do you think we should have her seen by a specialist?”
“Wouldn’t hurt. You should follow your instincts. If you want answers you should search for them.”
Back to the doctor for us…I used the PT as an out. “She thinks we should have Melanie seen to see if there is a diagnosis we’re missing.”
“Hmm.. . She seems great to me. (based on what? Her walking five steps across the room?) I don’t really see any low tone, but I will trust your instincts. I’m sure you don’t want to go all the way into Boston. I know a developmental specialist closer to us that should be able to help you.”
“Ok, if you think that’s best.”
The developmental specialist was thorough and comforting. He was the first person who narrowed his eyes when I told him Melanie’s difficulties and really searched for a cause. He reviewed her MRI from three years previous and found hydrocephalus on the report.
“Hydrocephalus?” I asked. “No one ever told me the MRI showed hydrocephalus.”
“Yep and a thinning of the corpus collosum.”
“What does that mean?”
“I would say your daughter as static congenital encephalopathy.”
OK, I know my medical terminology pretty well. Static means not changing, congenital means from birth and encephalopathy is a condition of the brain. So she has something wrong with her brain since birth that is not going to get worse. It sounded like a category to me more than a diagnosis. It also sounded like the definition of cerebral palsy.
“Is it CP?” I asked him?
“Well, I didn’t want to use that term because of the negative connotations surrounding it. But yes, static congenital encephalopathy is another way of saying CP.”
CP? My daughter has CP? Well, I guess it makes sense. But I think a lot of people are tossed into that diagnosis because they just can’t determine what else it could be. For awhile I was satisfied. She continued with her therapy and her activities to help her get over her issues and fears. Horseback riding, gymnastics, dance, PT and me working on her skills at home as much as possible with obstacle courses, bike riding, jump roping, etc.
Then comes Kylie. She’s almost three years younger than Melanie. I remember at the visit where the specialist tossed out the diagnosis, Kylie was just over one year old and not talking yet. I mentioned it to the doctor that day. “Give her a few more months and give me a call if she still isn’t saying much by 18 months.”
At 16 months she started early intervention. Before she turned two we were back at the specialist for Kylie this time.
“Well, she has really low tone.” He tells me. “That could affect her speech. She can’t learn to talk if she doesn’t have the muscle strength to do it. She needs more than just early intervention. Get her started in speech ASAP.”
There’s that low tone term again. Neurological bells went off in my head.
More therapy, more activites, more work at home for all of us.
Something was nagging at me. Why these developmental issues for both my children? I asked the pediatrician. Could they be linked? Could they both have something? The same thing possibly that causes a little bit different symptoms?
“Why don’t we schedule an appointment with a geneticist?” The doctor suggested.
“Geneticist? Not a neurologist?”
“No, geneticist is the way to go.”
“Ok.”
The geneticist appointment took a LONG time to get to. They were scheduled months in advance. Finally we made it there. Melanie talked up a storm and showed off her skills. Kylie sat quietly on my lap with her thumb in her mouth. “They look great.” The doctor said. “I don’t think we’ll find anything, but let’s run some tests.”
Ten vials of blood and three months later we’re back for the results. “Nothing. They’re both fine. Come see me in two years and maybe there will be new research and new tests that we can do if you are still concerned.”
OK. It’s official. I’m psycho. I’ve put my children through all these appointments and all these tests and there is absolutely nothing wrong with them. I give up. I’ll just continue to work on their skills, continue with the activities and therapy (now the specialist wants Kylie to see a speech therapist outside of her school speech for more intense work and a PT and OT for work on her overall body muscles AND a child psychologist to address her OCD tendencies. Forget it. There’s nothing wrong with her. Why do I have to do all that?)
Then the phone call came. My mom had been having a lot of dizziness, balance issues, vertigo and lightheadedness lately. She had undergone lots of testing and now the diagnosis was in. “I have what’s called an Arnold Chiari Malformation.”
“Wait, I’ve heard of that in school but I can’t exactly recall what it is.”
“It means that part of my cerebellum is herniated below my skull. It can cause problems with dizziness and balance. I have to have brain surgery.”
My fingers start typing in google. Tons of websites came up. I started reading the symptoms list.
First I should back up. When I was 17 years old I started having trouble swallowing my food. Any kind of meats or breads or heavy vegetables would get stuck halfway down my esophagus and would just sit there. Sometimes it would go down on it’s own eventually (but nothing goes past, so any swallowing I do after it’s stuck comes back up. Ew). Sometimes I would have to go to the hospital to have the food pushed down. I was given swallowing tests, xrays, you name it. Nothing other that a very small hernia was found. But the specialist didn’t seem to think that could be causing all my problems. Eventually I was give the diagnosis of Achalasia (esophageal motility problems for NO KNOWN REASON). At the same time I started having problems with my hip. Unbelievable hip pain would bring tears to my eyes with each step I took. Another doctor, more xrays, more of the same, “I don’t see anything wrong.” He gave me arthritis medicine. It seemed to help a little.
Seven years ago my right ear clogged up. It felt like I had been swimming at 11 feet depth and the water was stuck in my ear and wouldn’t come out. My jaw and neck would hurt too, especially when I was tired. The ear pain/pressure was constant and unchanging. I went to two different ENTs and an audiologist. “I don’t see anything wrong.” Seven years later – the ear pressure is still there, same as it was day one.
Now back to Google. The symptom list came up. Here are the ones related to us:
Hydrocephalus
Vertigo
Ear pressure/tinnitus
Dysphagia (difficulty swallowing)
Esophageal Motility problems/Achalasia
Weakness
Incontinence
Decreased tone
Imbalance
Clumsiness
Slowness and slurred speech
Jaw/ear/eye pain
Chronic Coughing
Word retrieval difficulties
Leg cramping
Blurry vision
Joint pain (hips)
anioscoria (pupil size difference)
I read the symptoms over and over.
Click
Click
Click
Click
It all fell into place. Not just for my girls but for me as well. My hands were shaking as I called the pediatrician and explained it the best I could. The nurse was skeptical. She spoke with the doctor and called me back. The doctor was skeptical. Anger surfaced in me. For the first time in this journey I was really angry. I typed out a long and detailed email to the pediatrician with the research I had done and my daughters’ symptoms. They agreed to see us and were very nice (but still skeptical) when we came in. She granted us an appointment with a neurologist in Boston (finally!!), but it would take several months before we could be seen. Fine. I’ve waited this long.
Now, my turn. I called my doctor. He was less skeptical because he was generally clueless about Chiari – “What is it called? How do you spell it?” He granted my visit to a local neurologist. I went and was meant with outright skepticism and hostility. “Swallowing problems and ear pain are not associated with Chiari.” She said looking at me intently. “Your cranial nerves are intact and your balance is fine. I’ll do the MRI to appease you.” Fine. I don’t care if you agree with me, but as long as you’re doing the MRI I’m satisfied.
The results came back quickly. I went in for the appointment which lasted exactly 30 seconds. “No Chiari.” She said. I held up my MRI films I had brought in. “You don’t want to see these?”
“No need. I read the report. No Chiari.”
“Oh.” Wow. How sure I was. I looked at my girls. If I don’t have it, how could they? How could my mom have it, skip me and give it to them? The likelihood didn’t seem possible. Do we still go to Boston and put them through all that? I’ve waited this long, might as well.
The pediatric neurologist was nice, but skeptical. “Melanie’s balance issues warrant an MRI just to rule it out and put your mind at ease, but Kylie’s hypotonia is not associated with Chiari so an MRI on her would be fruitless.” She diagnosed Kylie with “benign congenital hypotonia” (low tone from birth for no known reason). I hate the “no known reason” phrase. More standing on one foot, hopping and running down a hallway. When is someone going to ask them to go up and down stairs or climb up and down a ladder? When are they going to ask them to jump off of a surface instead of just jumping straight up in the air? I do a more thorough exam on kids when I test them for OT.
Melanie’s MRI came back several weeks later and I received the phone call from the doctor with the results. I hadn’t had to have patience because I was convinced it would be the same answer as ever (She’s FINE). But this time it was different. “Melanie’s MRI shows a Chiari Malformation.”
“Really???”
“Yes. She should see a neurosurgeon.”
“Really?”
“Yes.”
“How could she have it and not me?”
“That’s curious. I’d like to look at your MRI when you come back to me for your three month follow up.”
“What about Kylie?”
“I think we should do an MRI on her as well.”
Really? I was in disbelief. Was I happy or sad? Relieved to know? Or upset about the possibilities for the future? I dove into more research and found 16 hours worth of Chiari videos on-line. I had my homework to do.
But how could I wait three months to have my MRI looked at again? Surely my neurologist will see the connection and offer to review it personally. I put in the call, then another, explaining the situation. She has not called back.
Kylie’s MRI came and went. This time I was very impatient for the results. I had to know right away. Finally they came in. “No Chiari on Kylie.”
“Really????”
“Really. Completely normal brain scan.”
“Good.” I was relieved. But I still didn’t like the phrase, “no known reason.”
More research. I’ve found that people can have Chiari even with a 0 mm herniation. A radiologist won’t even comment on that. The tonsils of the cerebellum can be positioned in such a way to block cerebral spinal fluid from going up and down. You can’t see CSF on an MRI. Could this be me and Kylie?
Off to Melanie’s neurosurgeon. . .Finally we will get some answers I hoped. He even agreed to take a look at my MRI report.
Wrong. More grey. Greyer than grey. He said sure there is a herniation there on Melanie’s MRI, but it’s not much. And by definable standards by the National Institute of Health not even classified as a Chiari. In fact your herniation (mine) is bigger than Melanie’s, but still not Chiari. So I DO have a herniation. . .I knew my neurologist should have looked at the scans herself. Kylie’s scans look fine. . .but should be monitored as well as she grows.
“Why the symptoms then?”
“Don’t know. Could just be one of those things. You can do an MRI of her spine if you want to see if there is a tethered cord, but no rush. . .”
Thanks for nothing. . .
So more research. . .numerous sources state that even a 0 mm herniation can be devastating. Now I know for a fact I have a herniation and maybe this ear pressure, neck pain and swallowing issues are related to it. My new found support group has all rallied stating the doctor sounds like a “ding dong,” and we need to be seen by someone who will look at more than just an MRI. We need a cine MRI to measure the flow of CSF as well as a variety of other tests. Off to my primary to try to explain this mess and see where we go.
I’m fine with what he said about Melanie. He agreed she needs to be monitored over time. When she hits puberty the herniation can increase. We need to watch for signs such as headaches, neck aches, dizziness, etc. And we probably should get the spinal MRI to see if her spinal cord is attached to her vertebrae. That could explain the leg cramps and other issues (don’t want to embarrass her here). Would we do surgery to correct that? Doubtful. I don’t think having someone poke around her spinal cord is worth it. The symptoms she has now are manageable.
For me, I need to do something ASAP. My swallowing issues are worse than they have ever been and the ear pressure seems worse too. I find myself taking Ibuprofen just about every day for the ear pressure and headaches. That’s something new. It has been there for a long time, but not to the extent that I couldn’t ignore it. Also my right eye goes foggy on and off, which has also been happening more frequently. (like right now this very minute!).
I told Tom last night that I need to live in a world where you can stick your finger in a scanner and the computer spits out everything that’s wrong with you. Then a little laser can zap your body and correct all the deficiencies. Why don’t we live in that world yet????
We have more appointments, more specialists and more info to slooooowwwwwwlllly discover. . .
Time for more patience and a willingness to see the world is just full of grey.
I’m not good with being in limbo. It makes me anxious, irritable and nervous. Selling a house was torture. . .did they like it? Are they going to call with an offer? I would jump every time the phone rang for the 7 months the house was on the market.
I also do not have any patience. None. Zero. Zilch. Being pregnant was the longest nine months of my life. What would my child look like? Was she going to be a boy or a girl (what do you mean you can’t tell on the ultrasound????? This left me in tears). Then with my second child, going into labor at 32 weeks, then having constant contractions for the next 5 weeks while in the hospital and on bedrest was like God punishing me for not being a patient person. It had to be my fault. My poor husband. Did he realize he married someone with so little patience?
My children are so well behaved that luckily my patience isn’t tested often. I’ve also learned to take a deep breath and count to three (yes only three - I don't have the time to make it to 10!) when I’m feeling impatient. Why is my foot tapping? Why are my fingers drumming on the table? That’s my patience finding its way out of my body in an involuntary way.
I also know too much for my own good. I remember in OT school as we learned about the hundreds of different illnesses, congenital deformities and developmental delays that could happen to our children, wondering how any child could end up “normal.” We also joked amongst friends that irony will probably have our own children suffering from some of these issues.
Of my five closest OT friends (the Fab Five we called ourselves), between us we now have 10 kids. Eight of our children are completely normal. The two who have had delays and difficulties are my own. How could that be? My husband is athletic and intelligent. No history of obvious delays in his past. I’m not athletic, but I was always ahead of my peers in school work. We walked on time, talked on time and had a completely normal childhood. Why are BOTH of our children suffering with delays?????
First is Melanie. She seemed to develop normally for the first few months of her life, other than a strange pupil that was larger than the other resulting in a trip to Boston for an MRI at three months of age, then some funky positioning at five months old sent us back to the neurologist who found her to be “just fine.” But she didn’t crawl until after a year old and walking wasn’t until 16 months and even then she was soooo fearful of falling. Everything else came late too. The doctors said not to worry, she’s still young but we can have her seen by early intervention. Early intervention ended up working more on her speech than gross motor skills. Once she hit three years old she no longer qualified for early intervention and the doctor suggested to start physical therapy.
The PT worked on her balance, stairs, tricycle riding, etc. . .When I saw her evaluation form I about fell off my chair. Hypotonia was the diagnosis the PT had put down for reimbursement from the insurance company? Hypotonia? Was Melanie hypotonic? How could I have missed that? If it’s hypotonia doesn’t that mean there is a neurological component to her difficulties? I ran it past the PT. “Do you think we should have her seen by a specialist?”
“Wouldn’t hurt. You should follow your instincts. If you want answers you should search for them.”
Back to the doctor for us…I used the PT as an out. “She thinks we should have Melanie seen to see if there is a diagnosis we’re missing.”
“Hmm.. . She seems great to me. (based on what? Her walking five steps across the room?) I don’t really see any low tone, but I will trust your instincts. I’m sure you don’t want to go all the way into Boston. I know a developmental specialist closer to us that should be able to help you.”
“Ok, if you think that’s best.”
The developmental specialist was thorough and comforting. He was the first person who narrowed his eyes when I told him Melanie’s difficulties and really searched for a cause. He reviewed her MRI from three years previous and found hydrocephalus on the report.
“Hydrocephalus?” I asked. “No one ever told me the MRI showed hydrocephalus.”
“Yep and a thinning of the corpus collosum.”
“What does that mean?”
“I would say your daughter as static congenital encephalopathy.”
OK, I know my medical terminology pretty well. Static means not changing, congenital means from birth and encephalopathy is a condition of the brain. So she has something wrong with her brain since birth that is not going to get worse. It sounded like a category to me more than a diagnosis. It also sounded like the definition of cerebral palsy.
“Is it CP?” I asked him?
“Well, I didn’t want to use that term because of the negative connotations surrounding it. But yes, static congenital encephalopathy is another way of saying CP.”
CP? My daughter has CP? Well, I guess it makes sense. But I think a lot of people are tossed into that diagnosis because they just can’t determine what else it could be. For awhile I was satisfied. She continued with her therapy and her activities to help her get over her issues and fears. Horseback riding, gymnastics, dance, PT and me working on her skills at home as much as possible with obstacle courses, bike riding, jump roping, etc.
Then comes Kylie. She’s almost three years younger than Melanie. I remember at the visit where the specialist tossed out the diagnosis, Kylie was just over one year old and not talking yet. I mentioned it to the doctor that day. “Give her a few more months and give me a call if she still isn’t saying much by 18 months.”
At 16 months she started early intervention. Before she turned two we were back at the specialist for Kylie this time.
“Well, she has really low tone.” He tells me. “That could affect her speech. She can’t learn to talk if she doesn’t have the muscle strength to do it. She needs more than just early intervention. Get her started in speech ASAP.”
There’s that low tone term again. Neurological bells went off in my head.
More therapy, more activites, more work at home for all of us.
Something was nagging at me. Why these developmental issues for both my children? I asked the pediatrician. Could they be linked? Could they both have something? The same thing possibly that causes a little bit different symptoms?
“Why don’t we schedule an appointment with a geneticist?” The doctor suggested.
“Geneticist? Not a neurologist?”
“No, geneticist is the way to go.”
“Ok.”
The geneticist appointment took a LONG time to get to. They were scheduled months in advance. Finally we made it there. Melanie talked up a storm and showed off her skills. Kylie sat quietly on my lap with her thumb in her mouth. “They look great.” The doctor said. “I don’t think we’ll find anything, but let’s run some tests.”
Ten vials of blood and three months later we’re back for the results. “Nothing. They’re both fine. Come see me in two years and maybe there will be new research and new tests that we can do if you are still concerned.”
OK. It’s official. I’m psycho. I’ve put my children through all these appointments and all these tests and there is absolutely nothing wrong with them. I give up. I’ll just continue to work on their skills, continue with the activities and therapy (now the specialist wants Kylie to see a speech therapist outside of her school speech for more intense work and a PT and OT for work on her overall body muscles AND a child psychologist to address her OCD tendencies. Forget it. There’s nothing wrong with her. Why do I have to do all that?)
Then the phone call came. My mom had been having a lot of dizziness, balance issues, vertigo and lightheadedness lately. She had undergone lots of testing and now the diagnosis was in. “I have what’s called an Arnold Chiari Malformation.”
“Wait, I’ve heard of that in school but I can’t exactly recall what it is.”
“It means that part of my cerebellum is herniated below my skull. It can cause problems with dizziness and balance. I have to have brain surgery.”
My fingers start typing in google. Tons of websites came up. I started reading the symptoms list.
First I should back up. When I was 17 years old I started having trouble swallowing my food. Any kind of meats or breads or heavy vegetables would get stuck halfway down my esophagus and would just sit there. Sometimes it would go down on it’s own eventually (but nothing goes past, so any swallowing I do after it’s stuck comes back up. Ew). Sometimes I would have to go to the hospital to have the food pushed down. I was given swallowing tests, xrays, you name it. Nothing other that a very small hernia was found. But the specialist didn’t seem to think that could be causing all my problems. Eventually I was give the diagnosis of Achalasia (esophageal motility problems for NO KNOWN REASON). At the same time I started having problems with my hip. Unbelievable hip pain would bring tears to my eyes with each step I took. Another doctor, more xrays, more of the same, “I don’t see anything wrong.” He gave me arthritis medicine. It seemed to help a little.
Seven years ago my right ear clogged up. It felt like I had been swimming at 11 feet depth and the water was stuck in my ear and wouldn’t come out. My jaw and neck would hurt too, especially when I was tired. The ear pain/pressure was constant and unchanging. I went to two different ENTs and an audiologist. “I don’t see anything wrong.” Seven years later – the ear pressure is still there, same as it was day one.
Now back to Google. The symptom list came up. Here are the ones related to us:
Hydrocephalus
Vertigo
Ear pressure/tinnitus
Dysphagia (difficulty swallowing)
Esophageal Motility problems/Achalasia
Weakness
Incontinence
Decreased tone
Imbalance
Clumsiness
Slowness and slurred speech
Jaw/ear/eye pain
Chronic Coughing
Word retrieval difficulties
Leg cramping
Blurry vision
Joint pain (hips)
anioscoria (pupil size difference)
I read the symptoms over and over.
Click
Click
Click
Click
It all fell into place. Not just for my girls but for me as well. My hands were shaking as I called the pediatrician and explained it the best I could. The nurse was skeptical. She spoke with the doctor and called me back. The doctor was skeptical. Anger surfaced in me. For the first time in this journey I was really angry. I typed out a long and detailed email to the pediatrician with the research I had done and my daughters’ symptoms. They agreed to see us and were very nice (but still skeptical) when we came in. She granted us an appointment with a neurologist in Boston (finally!!), but it would take several months before we could be seen. Fine. I’ve waited this long.
Now, my turn. I called my doctor. He was less skeptical because he was generally clueless about Chiari – “What is it called? How do you spell it?” He granted my visit to a local neurologist. I went and was meant with outright skepticism and hostility. “Swallowing problems and ear pain are not associated with Chiari.” She said looking at me intently. “Your cranial nerves are intact and your balance is fine. I’ll do the MRI to appease you.” Fine. I don’t care if you agree with me, but as long as you’re doing the MRI I’m satisfied.
The results came back quickly. I went in for the appointment which lasted exactly 30 seconds. “No Chiari.” She said. I held up my MRI films I had brought in. “You don’t want to see these?”
“No need. I read the report. No Chiari.”
“Oh.” Wow. How sure I was. I looked at my girls. If I don’t have it, how could they? How could my mom have it, skip me and give it to them? The likelihood didn’t seem possible. Do we still go to Boston and put them through all that? I’ve waited this long, might as well.
The pediatric neurologist was nice, but skeptical. “Melanie’s balance issues warrant an MRI just to rule it out and put your mind at ease, but Kylie’s hypotonia is not associated with Chiari so an MRI on her would be fruitless.” She diagnosed Kylie with “benign congenital hypotonia” (low tone from birth for no known reason). I hate the “no known reason” phrase. More standing on one foot, hopping and running down a hallway. When is someone going to ask them to go up and down stairs or climb up and down a ladder? When are they going to ask them to jump off of a surface instead of just jumping straight up in the air? I do a more thorough exam on kids when I test them for OT.
Melanie’s MRI came back several weeks later and I received the phone call from the doctor with the results. I hadn’t had to have patience because I was convinced it would be the same answer as ever (She’s FINE). But this time it was different. “Melanie’s MRI shows a Chiari Malformation.”
“Really???”
“Yes. She should see a neurosurgeon.”
“Really?”
“Yes.”
“How could she have it and not me?”
“That’s curious. I’d like to look at your MRI when you come back to me for your three month follow up.”
“What about Kylie?”
“I think we should do an MRI on her as well.”
Really? I was in disbelief. Was I happy or sad? Relieved to know? Or upset about the possibilities for the future? I dove into more research and found 16 hours worth of Chiari videos on-line. I had my homework to do.
But how could I wait three months to have my MRI looked at again? Surely my neurologist will see the connection and offer to review it personally. I put in the call, then another, explaining the situation. She has not called back.
Kylie’s MRI came and went. This time I was very impatient for the results. I had to know right away. Finally they came in. “No Chiari on Kylie.”
“Really????”
“Really. Completely normal brain scan.”
“Good.” I was relieved. But I still didn’t like the phrase, “no known reason.”
More research. I’ve found that people can have Chiari even with a 0 mm herniation. A radiologist won’t even comment on that. The tonsils of the cerebellum can be positioned in such a way to block cerebral spinal fluid from going up and down. You can’t see CSF on an MRI. Could this be me and Kylie?
Off to Melanie’s neurosurgeon. . .Finally we will get some answers I hoped. He even agreed to take a look at my MRI report.
Wrong. More grey. Greyer than grey. He said sure there is a herniation there on Melanie’s MRI, but it’s not much. And by definable standards by the National Institute of Health not even classified as a Chiari. In fact your herniation (mine) is bigger than Melanie’s, but still not Chiari. So I DO have a herniation. . .I knew my neurologist should have looked at the scans herself. Kylie’s scans look fine. . .but should be monitored as well as she grows.
“Why the symptoms then?”
“Don’t know. Could just be one of those things. You can do an MRI of her spine if you want to see if there is a tethered cord, but no rush. . .”
Thanks for nothing. . .
So more research. . .numerous sources state that even a 0 mm herniation can be devastating. Now I know for a fact I have a herniation and maybe this ear pressure, neck pain and swallowing issues are related to it. My new found support group has all rallied stating the doctor sounds like a “ding dong,” and we need to be seen by someone who will look at more than just an MRI. We need a cine MRI to measure the flow of CSF as well as a variety of other tests. Off to my primary to try to explain this mess and see where we go.
I’m fine with what he said about Melanie. He agreed she needs to be monitored over time. When she hits puberty the herniation can increase. We need to watch for signs such as headaches, neck aches, dizziness, etc. And we probably should get the spinal MRI to see if her spinal cord is attached to her vertebrae. That could explain the leg cramps and other issues (don’t want to embarrass her here). Would we do surgery to correct that? Doubtful. I don’t think having someone poke around her spinal cord is worth it. The symptoms she has now are manageable.
For me, I need to do something ASAP. My swallowing issues are worse than they have ever been and the ear pressure seems worse too. I find myself taking Ibuprofen just about every day for the ear pressure and headaches. That’s something new. It has been there for a long time, but not to the extent that I couldn’t ignore it. Also my right eye goes foggy on and off, which has also been happening more frequently. (like right now this very minute!).
I told Tom last night that I need to live in a world where you can stick your finger in a scanner and the computer spits out everything that’s wrong with you. Then a little laser can zap your body and correct all the deficiencies. Why don’t we live in that world yet????
We have more appointments, more specialists and more info to slooooowwwwwwlllly discover. . .
Time for more patience and a willingness to see the world is just full of grey.
Saturday, January 5, 2008
Family updates
Tom's grandmother, Teresa Davis passed away on Sunday from a brain hemorrhage. She was 95. We attended the wake last night and saw family members we hadn't seen in years. The funeral and burial are today, but unfortunately Kylie woke up with a fever this morning so she and I are staying home while Tom and Melanie spend the day with the family. The photo of the girls is from the wake last night. The little girl is Ridley - Tom's cousin Leah's 2 year old daughter. She would be 3rd cousin to the girls? The other photo is of the photo board of Teresa - lots of great images from her life.
On Monday we have Melanie's appointment with the neurosurgeon. Since her diagnosis I have been doing a ton of research on Chiari. I have joined two Yahoo Chiari groups and I have exchanged emails with many, many other Chiari patients who are so helpful in their advice and sharing of their stories. I have a long list of questions for the neurosurgeon on Monday and even sent him an email ahead of time (to warn him mostly that we are coming and to be prepared!!!!). He emailed me right back so that was a bit comforting. Although he already has mentioned that he does not agree with some of the "experts" on Chiari (which is the source of most of my research). It will be an interesting appointment. Tom has suggested that I keep an open mind and be optimistic. After all, Boston's Children's Hospital is one of the most renowned hospitals in the world.
Wish us luck on Monday!!!
Subscribe to:
Posts (Atom)
