It's cold here today. . .19 degrees. . .Kylie and I are staying in. I'm cleaning, she's playing and catching up on some lazy time.
It's been another crazy week medical wise. We had a doctor read the wrong MRI for Melanie and assured us that all she has is mild scoliosis, not tethered cord before I set him straight, but in the meantime there was a lot of crazy phone calls and emails (Who knew there would be another Melanie Davis born in the year 2000, and given an MRI of the back the same week as my Melanie????). Once he read the right MRI and saw that it was suspicious for tethered cord, we got back on track with things.
The school nurse has been after me for awhile to know what Melanie can and can't do in gym. I found out that gymnastics and cheerleading are out of the question for her. (Hmmm. . .she's been in gymnastics every year since she was 3 until this year). I didn't ask about horseback riding. She hasn't been all winter, but I just can't fathom telling her she can't ever go back. We'll wait till ALL the testing is done before we broach that subject.
I got some MRI results of my own and found out I have a bulging disc of L5-S1 that is probably the cause of some of my back pain symptoms. So now I have been told no heavy lifting and use proper body mechanics to assure the disc doesn't rupture. (Can I have a doctor's note to give to Kylie when she wants to be picked up? And Tom, can you buy the 35 pound bag of dog food every month from now on??).
So at least we know I don't have a tethered cord and my symptoms are related to the disc.
Kylie is having a spinal MRI on Monday, but since her symptoms are much different than Melanie's I am doubtful it will show anything, but nothing will surprise me at this point.
Melanie is going to have urodynamic testing done (google it if you want to know about it). I am waiting for that to be scheduled. It seems to be taking forever to get that in motion. Supposedly that will be the definitive answer to whether the cord is tethered or not.
My dad seems to be doing great with the chemo. So far the biggest side effect is fatigue. So that's a relief.
Hope everyone is doing well and staying warm!
Friday, February 29, 2008
Sunday, February 24, 2008
Rhode Island Competition
Kylie's second cheer competition was today in Lincoln, Rhode Island. We had to leave the house at 7 am ready for cheering! They performed around 10:30 and then we waited until all our groups had gone before we left around 12:00. Then it was straight back to the Cape to meet Melanie at a swimming birthday party which went until 3:00. It was a long day, but the group did an awesome job again. Here are some pics and another video of their performance (above). Also check out Tom's slideshow of the last time they performed in Woburn on his blog under the Proud Dad posting.
Oh, while Kylie and I were at the competition, Tom was volunteering at the Hyannis Marathon -directing runners and traffic at miles 11 & 24 for 6 hours in the 30 degree weather. I guess at least he wasn't running in it!
Saturday, February 16, 2008
Rollercoaster . . .
Melanie's neurologist appointment on Thursday was just another chapter of frustration for us. The doctor had said on Monday that the spinal cord is lower than it should be indicating a tethered cord and would need surgery to correct. On Thursday she had changed her tune considerably. Yes, the spinal cord is lower than it should be, but it was hard to tell for sure if there was a tethered cord - "it's a grey area"- and there probably wouldn't be anything a neurosurgeon could do for us.
Talk about an emotional rollercoaster.
Regardless, she still wants Melanie to visit a urologist for bladder testing, have another MRI of her thoracic spine, follow up with the neurosurgeon and then again with her in four months. More appointments and tests for probably the same end result - yes there are abnormalities, no there isn't anything to do for it.
We didn't set out on this journey to have the issues fixed. We set out to find answers and to see if this is a progressive issue that HAS to be fixed. If it's not progressive, then we would just rather leave everything alone. We keep getting inconsistent reports. One minute we think she has Chiari that may need to be surgically corrected, then we find out it can't be, then we find out she has tethered cord and will need surgery and then that surgery probably won't help.
And we're not finished yet.
Many people (doctors included) think this is stressing me out and I need to decompress so as to not exacerbate my symptoms more. I have been dealing with some of my symptoms for most of my life. My swallowing has been getting progressively worse for a couple of years and we are to the point again where I need to have the esophagus stretched again, but was hoping for some answers to the reason for it first (and we know that swallowing issues are linked to Chiari). My headaches do not correlate to stressful days, but to days when the weather might be bad or when I have to sit in one position for a long time (in the car) and have been an issue for almost 7 years. . .I looked for answers for the headaches/earache 7 years ago, but gave up after no one had answers for me. Now that I know there is a cerebellar herniation and others share the same symptoms, it makes the symptoms come to light again, but in no way are they worse now than they have been for the past 7 years.
And Melanie is the least stressed of all of us - she doesn't have nightmares or anxieties about this. She continues to happily play and have anxieties about normal childhood issues (losing her favorite bracelet this week was the most stressful thing that happend to her). But yet she continues to have medical issues and symptoms that have been around for several years and we would like to have answers for.
So, yes we are a bit stressed, but not overly so. We are dealing with it appropriately. I know when I need some time off from thinking about it and I snuggle with the girls to watch a movie or play games or read a book. I sometimes write to help cope with stress and Tom goes for a run. But really, I think we're doing fine. I was at my boiling point after the doctor's visit, but that was purely from frustration and has passed now.
Talk about an emotional rollercoaster.
Regardless, she still wants Melanie to visit a urologist for bladder testing, have another MRI of her thoracic spine, follow up with the neurosurgeon and then again with her in four months. More appointments and tests for probably the same end result - yes there are abnormalities, no there isn't anything to do for it.
We didn't set out on this journey to have the issues fixed. We set out to find answers and to see if this is a progressive issue that HAS to be fixed. If it's not progressive, then we would just rather leave everything alone. We keep getting inconsistent reports. One minute we think she has Chiari that may need to be surgically corrected, then we find out it can't be, then we find out she has tethered cord and will need surgery and then that surgery probably won't help.
And we're not finished yet.
Many people (doctors included) think this is stressing me out and I need to decompress so as to not exacerbate my symptoms more. I have been dealing with some of my symptoms for most of my life. My swallowing has been getting progressively worse for a couple of years and we are to the point again where I need to have the esophagus stretched again, but was hoping for some answers to the reason for it first (and we know that swallowing issues are linked to Chiari). My headaches do not correlate to stressful days, but to days when the weather might be bad or when I have to sit in one position for a long time (in the car) and have been an issue for almost 7 years. . .I looked for answers for the headaches/earache 7 years ago, but gave up after no one had answers for me. Now that I know there is a cerebellar herniation and others share the same symptoms, it makes the symptoms come to light again, but in no way are they worse now than they have been for the past 7 years.
And Melanie is the least stressed of all of us - she doesn't have nightmares or anxieties about this. She continues to happily play and have anxieties about normal childhood issues (losing her favorite bracelet this week was the most stressful thing that happend to her). But yet she continues to have medical issues and symptoms that have been around for several years and we would like to have answers for.
So, yes we are a bit stressed, but not overly so. We are dealing with it appropriately. I know when I need some time off from thinking about it and I snuggle with the girls to watch a movie or play games or read a book. I sometimes write to help cope with stress and Tom goes for a run. But really, I think we're doing fine. I was at my boiling point after the doctor's visit, but that was purely from frustration and has passed now.
Tuesday, February 12, 2008
MRI Results
So, I couldn't wait until Thursday for our appointment with the neurologist to hear the results of Melanie's MRI. But I had a good reason for being impatient. Today is her 8 year physical with her pediatrician and due to many symptoms she has been having lately, I thought it was important to know whether there was a tethered cord causing these symptoms before talking to her doctor about them.
The neurologist called me right back and didn't want to tell me the results right away. She had been holding onto them for our meeting on Thursday to go over with them in person with us. But when I explained the reasoning, she agreed that we should know that Melanie in fact DOES have a tethered cord.
Here is what a tethered cord is from the National Institute of Health (click there for the full description and treatment of tethered cord):
Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence.
When we go for our neurologist appointment on Thursday we will discuss the diagnosis as well as get a referral to a neurosurgeon. This is a surgical issue that will require intervention before the symptoms worsen.
The tethered cord is linked to the Chiari diagnosis. When the spinal cord is attached to the vertebrae, it stretches and pulls and ends up pulling the cerebellum out of the skull resulting in a herniation.
I am in the process of composing my list of questions for the doctor. I would like a few more tests done, especially a MRI of the thoracic and cervical spine to see if there is a syrinx (another complication of Chiari and tethered cord that may require surgery).
There is a video that explains the tethered cord with pictures here. Click on the Chiari Malformation video to see the info about tethered cord. You can watch the other videos as well. They are all highly informative.
The Chiari Institute
The Chiari Institute is a place in New York that specializes in surgery of this type of thing. It is a consideration of ours to go there to see the experts in the field, but it is out of network for our insurance and there would be a ton of red tape to go through to get there (and many times insurance won't cover all the expense).
This diagnosis explains a lot of Melanie's symptoms since she was a baby. When she was only 3 months old we went for an MRI of her head due to unequal pupil size, then soon after she developed an unusual birthmark over the back of her right hip, then she had a lot of posturing and arching of her back (standing on her tiptoes), sending us back to the neurologist at abotut 5 or 6 months of age. If they had done the MRI of the spine then, she would have been treated much sooner and would possibly have never have developed the symptoms she has today. I had a lot of concerns when she had trouble learning to walk and with her gross motor development and I felt like I was always treated like the psycho, worried parent and sometimes was afraid to speak up. The doctors just kept telling me everything was fine, but they would investigate if it would make me feel better. Just a lesson - trust your maternal instincts! Just imagine if I hadn't pushed for this (and we were met with skepticism every step of the way). See my post of Patience with Shades of Grey from Tuesday, January 8 to refresh my frustration. I could write that same thing again right now!
Anyway, I'm sure the frustrations are not over. Now I'm the skeptical one! When we go to the new neurosurgeon there is still the chance he doesn't see the same thing on the MRI that the neurologist saw and dismisses us once again. If that's the case I think we will end up at the Chiari Institute.
We did talk to Melanie about this and she is scared and worried about the possibility of surgery. Poor thing, she is horribly terrified of pain and this would be a very painful procedure (72 hours lying flat in pediatric ICU one website said with several weeks recovery). We aren't going to talk to her too much about that until we know for sure what will be done, but we at least wanted her to start preparing herself for the possibility. Just keep us in your prayers for this journey!
The neurologist called me right back and didn't want to tell me the results right away. She had been holding onto them for our meeting on Thursday to go over with them in person with us. But when I explained the reasoning, she agreed that we should know that Melanie in fact DOES have a tethered cord.
Here is what a tethered cord is from the National Institute of Health (click there for the full description and treatment of tethered cord):
Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence.
When we go for our neurologist appointment on Thursday we will discuss the diagnosis as well as get a referral to a neurosurgeon. This is a surgical issue that will require intervention before the symptoms worsen.
The tethered cord is linked to the Chiari diagnosis. When the spinal cord is attached to the vertebrae, it stretches and pulls and ends up pulling the cerebellum out of the skull resulting in a herniation.
I am in the process of composing my list of questions for the doctor. I would like a few more tests done, especially a MRI of the thoracic and cervical spine to see if there is a syrinx (another complication of Chiari and tethered cord that may require surgery).
There is a video that explains the tethered cord with pictures here. Click on the Chiari Malformation video to see the info about tethered cord. You can watch the other videos as well. They are all highly informative.
The Chiari Institute
The Chiari Institute is a place in New York that specializes in surgery of this type of thing. It is a consideration of ours to go there to see the experts in the field, but it is out of network for our insurance and there would be a ton of red tape to go through to get there (and many times insurance won't cover all the expense).
This diagnosis explains a lot of Melanie's symptoms since she was a baby. When she was only 3 months old we went for an MRI of her head due to unequal pupil size, then soon after she developed an unusual birthmark over the back of her right hip, then she had a lot of posturing and arching of her back (standing on her tiptoes), sending us back to the neurologist at abotut 5 or 6 months of age. If they had done the MRI of the spine then, she would have been treated much sooner and would possibly have never have developed the symptoms she has today. I had a lot of concerns when she had trouble learning to walk and with her gross motor development and I felt like I was always treated like the psycho, worried parent and sometimes was afraid to speak up. The doctors just kept telling me everything was fine, but they would investigate if it would make me feel better. Just a lesson - trust your maternal instincts! Just imagine if I hadn't pushed for this (and we were met with skepticism every step of the way). See my post of Patience with Shades of Grey from Tuesday, January 8 to refresh my frustration. I could write that same thing again right now!
Anyway, I'm sure the frustrations are not over. Now I'm the skeptical one! When we go to the new neurosurgeon there is still the chance he doesn't see the same thing on the MRI that the neurologist saw and dismisses us once again. If that's the case I think we will end up at the Chiari Institute.
We did talk to Melanie about this and she is scared and worried about the possibility of surgery. Poor thing, she is horribly terrified of pain and this would be a very painful procedure (72 hours lying flat in pediatric ICU one website said with several weeks recovery). We aren't going to talk to her too much about that until we know for sure what will be done, but we at least wanted her to start preparing herself for the possibility. Just keep us in your prayers for this journey!
Happy Eighth Melrose!
Melanie's 8th birthday was on Sunday. We celebrated by taking her the the Hannah Montana 3-D concert movie on Saturday after Kylie's performance. Melanie LOVED it and is still talking about it. Kylie enjoyed it as well right up until the time she fell asleep then she was MAD when she woke up and she had missed half of it. Tom also got a good nap out of it.
Melanie received lots of great gifts from the family including a High School Musical MP3 that she has been carrying around ever since. She also got a cool make your own book from my brother and his wife, lots of great clothes from Beach Grammy and a cool little compass/flashlight/thermometer from my parents we have all been playing with (we now know it's 76 degrees in Kylie's bedroom and 68 in mine and Tom's. . .)
Sunday, February 10, 2008
Fabulous!
Kylie has been expressing an interest in cheerleading for awhile and I promised her when she turned 5 we would go check it out. So, in January we visited the new local competitive cheerleading group in town called Xtreme Cheer and Kylie immediately loved it. She was added to the Mini Level 1 team that has been practicing together for several months already. I was worried she was too far behind and would think it was too hard. The other girls already knew most of the routine and all can already do their cartwheels. But Kylie wasn't discouraged - she loves it!
Their first competition was in Woburn yesterday. Watch the above video - Kylie is the littlest. She starts out in the front, rolls to the left (her right), is on the right side for the first stunt (her left), is in the middle for the cheer and stays on her knee while the other girls do their cartwheel. Then she is in the back for Work it Out, goes UP HIGH in the stunt for Fabulous and then is in the back on the left for the last dance and goes up once again for the final formation. They compete again in 2 weeks and I will try to zoom in more on her.
There are some great photos of her on this website:
http://www.photoreflect.com/pr3/ThumbPage.aspx?e=3514477&g=0HVN004P0E
So what did Kylie say after she was finished? "I want to do it again!"
Their first competition was in Woburn yesterday. Watch the above video - Kylie is the littlest. She starts out in the front, rolls to the left (her right), is on the right side for the first stunt (her left), is in the middle for the cheer and stays on her knee while the other girls do their cartwheel. Then she is in the back for Work it Out, goes UP HIGH in the stunt for Fabulous and then is in the back on the left for the last dance and goes up once again for the final formation. They compete again in 2 weeks and I will try to zoom in more on her.
There are some great photos of her on this website:
http://www.photoreflect.com/pr3/ThumbPage.aspx?e=3514477&g=0HVN004P0E
So what did Kylie say after she was finished? "I want to do it again!"
Saturday, February 9, 2008
Melanie's Birthday Party
Last Saturday, we celebrated Melanie's 8th birthday with her friends with a High School Musical 2 birthday party(Her birthday is actually tomorrow - the 10th). Ten of her closest friends came to enjoy the games, dancing, pizza and cake. On arrival, each girl was given a quiz to see which HS Musical character they were most like. We ended up with 7 Sharpays, 3 Taylors and 1 Gabriella (Melanie). Sharpay is the snobby, rich and sometimes mean girl - it's interesting most of the girls wanted to be just like her (including my Kylie!). Taylor is the smart, conservative character. I think it's a good sign we have 3 Taylors in our midst. And the Gabriella is smart, but also a little fun.
The cake was done by Lisa at Delicious Desserts in Falmouth. She is one of the top gourmet wedding bakers in the area. She and Tom have worked together at many weddings and have referred business to each other. The cake was a huge hit! Everyone loved it.
The cake was done by Lisa at Delicious Desserts in Falmouth. She is one of the top gourmet wedding bakers in the area. She and Tom have worked together at many weddings and have referred business to each other. The cake was a huge hit! Everyone loved it.
Friday, February 1, 2008
Kylie's post to her grandparents
Kylie has been reading Dick and Jane a lot. She even wanted to take it to school yesterday and read for her whole class at circle time. Today she wanted me to record her reading so she could show all her grandparents. It starts out with her speech warm up exercises - being able to go from the "t" sound to the "k" sound (very hard for her). Then she starts the book. She can go pretty far in the book, but since she decided to read the whole table of contents first, she didn't make it as far as usual. She also has a little cold so she's stuffy and it's even harder to make the sounds. But she is doing AWESOME as far as reading goes. We are so proud of her.
Global updates
Many of you have asked how my dad is doing. It has been slow going and he has undergone tons of testing, but they think they have finally determined the cancer is coming from the bile duct. The biopsies show it to be stage 4 which is considered incurable. That terms sounds frightening, but I guess what it really means is it will never go away, but can be controlled by chemo throughout life. Chemo started on Tuesday at KU Med and will be once a week for the next few weeks, then a week off for a total of a 3 month cycle. At the end of 3 months, they will reassess.
As for my mom, she seems to be doing ok, although tired from all the doctor's visits. She has had some dizzy episodes again, but says she still feels pretty good.
We have a busy month of our own doctor's visits ahead of us. Melanie goes for her MRI of her spine on Sunday - which I found out was NOT ordered by her neurosurgeon, but by her neuorolgist who originally saw her back in November. I'm not sure how she knew to order it (she said she would order it if the neurosurgeon didn't because he was known to be conservative when it comes to Chiari.). Anyway, that's on Super Bowl Sunday - Melanie and I will head to Boston together while Tom and Kylie stay home and watch all the pre-game hype.
Then Monday afternoon I have my appointment with the neurosurgeon up in Boston. I haven't started to prepare for that yet. I have to fill out some paperwork and I want to type up all my symptoms and questions for him. My swallowing has been as bad as ever and I am carrying applesauce wherever I go. So far it hasn't failed me (maybe I don't need expensive surgery - just applesauce!). My headaches, ear pain and neck aches are still there and seem worse right now because I fighting a cold.
Then on Valentine's day we are back to Boston to follow up with Melanie's neurosurgeon and hopefully get the results of the spinal MRI. I think this is a trip we will all take together.
Tomorrow is Melanie's 8th birthday party. I'll post pictures!
Also, I have been writing again. Thank goodness for the writer's strike! Tom has had either meetings or shoots every night this week, so I have been up writing until he gets home (except for last night I had to watch Lost). It's a fun book! I can't say what it's about yet other than I am enjoying writing it.
As for my mom, she seems to be doing ok, although tired from all the doctor's visits. She has had some dizzy episodes again, but says she still feels pretty good.
We have a busy month of our own doctor's visits ahead of us. Melanie goes for her MRI of her spine on Sunday - which I found out was NOT ordered by her neurosurgeon, but by her neuorolgist who originally saw her back in November. I'm not sure how she knew to order it (she said she would order it if the neurosurgeon didn't because he was known to be conservative when it comes to Chiari.). Anyway, that's on Super Bowl Sunday - Melanie and I will head to Boston together while Tom and Kylie stay home and watch all the pre-game hype.
Then Monday afternoon I have my appointment with the neurosurgeon up in Boston. I haven't started to prepare for that yet. I have to fill out some paperwork and I want to type up all my symptoms and questions for him. My swallowing has been as bad as ever and I am carrying applesauce wherever I go. So far it hasn't failed me (maybe I don't need expensive surgery - just applesauce!). My headaches, ear pain and neck aches are still there and seem worse right now because I fighting a cold.
Then on Valentine's day we are back to Boston to follow up with Melanie's neurosurgeon and hopefully get the results of the spinal MRI. I think this is a trip we will all take together.
Tomorrow is Melanie's 8th birthday party. I'll post pictures!
Also, I have been writing again. Thank goodness for the writer's strike! Tom has had either meetings or shoots every night this week, so I have been up writing until he gets home (except for last night I had to watch Lost). It's a fun book! I can't say what it's about yet other than I am enjoying writing it.
Girls night out
Last Friday, a couple of friends and I made it out for dinner, drinks and a movie. We ate at a great trendy place called Trevi and then saw the movie Juno - great movie. I cried.
Here's a pic of our girls night. These are my friends Wendy and Amy. Thanks for going out ladies! When is the next one?
Here's a pic of our girls night. These are my friends Wendy and Amy. Thanks for going out ladies! When is the next one?
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