I am super awesome at three things. I can make awesome mashed potatoes. My Grandpa Pat taught me the secret and no, I won't share it. I have mad crafting skills and can do MacGyver type crafting. Give me some hot glue, 3 inches of felt and a Bedazzler and I can make a functioning boat. No lie. Lastly, I have mastered denial and have made it into an art form.
I did just a bit of research on Chiari Malformation over the last week. I try not to Google things when it comes to my kids. Mostly because I am horrible at internet searches and would come across a website stating all their symptoms point to Antarctic Swine Polio. In the limited Googling I did do, these are the Chiari symptoms I came across:
1. Headache
2. Progressive scoliosis
3. Cerebellar dysfunction (difficulty with balance, low muscle tone)
4. Alteration of voice
5. Frequent respiratory tract infections.
6. Suspended alteration of sensation (arms are affected, but not legs)
7. Spasticity
Red Flag symptoms:
1. Severe swallowing problems
2. Tachyarrythmias
3. Severe nausea
4. Central Sleep apnea
All of the bolded symptoms are ones Josie has. Even with that, I was still able to deny that this was her issue. If this was her issue, she would need major surgery. On her head. No, in her head. So even though they found a Chiari Malformation, in no way was it severe enough to cause her symptoms, there must be something much less scary to blame.
I was able to tell myself that until today when the MRI results came in the mail. I searched the page hoping to find the words "Sorry, we made a mistake. Not only does everything look awesome, but she also has a tiny unicorn living in her skull." Unfortunately those words weren't on the page. Instead words like "below the level of the foramen magnum of approximately 12mm" and "small CSF flow" were in their place.
Even I can't deny that. Shit.
One a high note, only thing I am great at (great, not awesome) is finding a silver lining. The silver lining to this is patients with a 12mm Cerebellar Tonsil always have symptoms. So there is a high chance this will explain everything. Now I just need to find a magical fairy that can wave her wand and put Josie's brain where it should be. Maybe she can even put that tiny unicorn in there too.
Saturday, August 25, 2012
Friday, August 17, 2012
So close I can almost taste it!
I never thought we would hear the words "that may explain Josephine’s symptoms." After years of false hope, I had basically resigned myself to the fact that we may never our explanation. Today was really no different. I went into Josie's MRI thinking "this will be another test that leaves us with more questions than answers" and wondering why I was putting either of us through it.
Because Josie had to fast before the blood work, we left early for the procedure so she didn't have to watch as the other two kids ate. We went to an indoor play area and spent a few hours laughing and playing. There is something about a water pump and pretty rocks that takes her mind off being hungry.
The MRI went very smoothly. I went with as she went under anesthesia. In the past, she has gone under swinging, today it was peaceful. That peace carried through the long wait for her to be done and into her waking up. Everything when smoothy until Josie started yelling at her nurse for shooting her while she slept. I kept trying to tell her that giving her an IV is not the same as shooting her, but there was no changing Josie's mind. She continued to complain about being shot even as we were leaving the hospital.
I was prepared to have to wait over the weekend for the results, but as we were pulling in to get our customary donut I got an email from Dr. Randy. The MRI showed a Chiari Malformation. Basically, the the area where Josie's skull meets her spine isn't wide enough and puts pressure in places where there shouldn't be pressure. A Chiari Malformation would explain all the symptoms, BUT because of how common it is, it may just be that she has this plus something else. If that is the case, you will be able to find me completely drunk in my back yard.
The next week weeks will be crazy. Dr. Randy wants Josie to meet with a neurosurgeon and wants Teague and Hailey to get in for an MRI. The one good thing is that Hailey and Teague get to bypass all the other tests and go straight to the MRI.
Monday, August 13, 2012
Hailey's garden update
Each evening, Hailey goes out to water and weed her little plot of vegetables, careful not to harm any of the plants and reports back just how much they have grown since the day before. I was a bit worried that the novelty of a garden would wear off, but she is grows more proud of it with each day.
The sixth delivery of vegetables was made today. So far Hailey has helped a disabled Vet, a young couple and a woman who is obviously struggling. In true Hailey fashion, she is able to find the beauty in each person she helps. Today was no different. We met a woman outside the super market that had the look of someone that had been using meth for some time. She was missing her teeth and scratched violently at her arms as she rocked on a bench, but as we walked away Hailey said "did you see how her eyes sparkled when she smiled?"
When this little journey started, I figured it would be a good lesson to Hailey about how plants grow and maybe a bit about helping others. We would spend hours discussing the different plants, giggle about how much dirt we had under our nails, and maybe make a delivery or two of veggies. While we did talk about the plants and giggle about dirt under our nails, I never imagined how much time we would spend talking with the people we brought the food to. I think this is what has made Hailey so determined to make her garden successful. She is no longer growing the food for a stranger, she is growing them for her new friends.
So far Hailey has been able to pick peas, beans, carrots (side note: carrots don't like to be transplanted), spinach and a handful of cherry tomatoes. The peas yielded more than I thought they would. The six plants were able to fill eight sandwich bags. I am not sure if that is a lot for a pea plant. I was not blessed with a green thumb so I just assumed they would die after giving us a pea or two.
Since summer finally started to grace Washington, Hailey's tomatoes, peppers and cucumbers may have a chance to grow. Let me rephrase, maybe the fruit will grow on the tomato plants. The tomato plants are ridiculously tall.
The sixth delivery of vegetables was made today. So far Hailey has helped a disabled Vet, a young couple and a woman who is obviously struggling. In true Hailey fashion, she is able to find the beauty in each person she helps. Today was no different. We met a woman outside the super market that had the look of someone that had been using meth for some time. She was missing her teeth and scratched violently at her arms as she rocked on a bench, but as we walked away Hailey said "did you see how her eyes sparkled when she smiled?"
When this little journey started, I figured it would be a good lesson to Hailey about how plants grow and maybe a bit about helping others. We would spend hours discussing the different plants, giggle about how much dirt we had under our nails, and maybe make a delivery or two of veggies. While we did talk about the plants and giggle about dirt under our nails, I never imagined how much time we would spend talking with the people we brought the food to. I think this is what has made Hailey so determined to make her garden successful. She is no longer growing the food for a stranger, she is growing them for her new friends.
So far Hailey has been able to pick peas, beans, carrots (side note: carrots don't like to be transplanted), spinach and a handful of cherry tomatoes. The peas yielded more than I thought they would. The six plants were able to fill eight sandwich bags. I am not sure if that is a lot for a pea plant. I was not blessed with a green thumb so I just assumed they would die after giving us a pea or two.
Since summer finally started to grace Washington, Hailey's tomatoes, peppers and cucumbers may have a chance to grow. Let me rephrase, maybe the fruit will grow on the tomato plants. The tomato plants are ridiculously tall.
I will need to stand on the fence to get the tomatoes from the top
Hailey and I have already started talking about which veggies we will plant in the fall. I think we will try carrots again but this time I won't touch them.
Wednesday, August 1, 2012
Religion, homosexuality and a very curious six year old
I am very blessed to have people in my life that are different races, religions and economic statuses. I am even more blessed to have these people in my children's lives. Because of the different perspectives, it has opened up the door to some wonderful conversations with the kids.
Anyone that knows me knows that I am not a religious person so when the topic of religion was brought up I struggled to come up with a way to explain it without letting my feelings get in the way. In the end, the kids were told that religion is like having a favorite color. You love that color and feel with every fiber of your being that it is the best color. My children have come to learn that their "color" may not be the same as their friend's "color" and that is ok. It is ok to have a different "color" and be proud of that "color," but you should never force your "color" on someone or put down someone or their "color." The girls understand that it is all these different colors and all the different beliefs that make the world such an amazing place and it would be a dull world if everyone had the same favorite "color."
Hailey is one of those children that asks questions from the minute she wakes up until well after she should be in bed. It is one of my favorite qualities in her, but it often leads to topics being brought up that I wouldn't expect to talk about with a six year old. Naturally one day she asked why we don't like the other "colors" and this led to the topic of heaven, hell and homosexuality. I am often amazed at the things that come out of Hailey's mouth as she is wise beyond her years. When I explained that many people disagree with two men or two women getting married her response was "if they don't agree with it, then they shouldn't do it. But really, how does it affect them?" I wish I had an answer to that question. She asked me it days ago (and a few times since) and I honestly do not know how it affects others.
Over the last few days I have read hurtful messages in response to Gay marriage from both sides. I do not understand how as adults this is considered ok. Religion is such a personal experience and should be about a relationship between you and your God, not about degrading other human beings. Like I said, I am not a religious person, but everything I have read about God and what I have heard from friends is that God is about loving your fellow man regardless of their sins. I say be proud of your "color" but realize that not everyone feels the same and that is ok.
Anyone that knows me knows that I am not a religious person so when the topic of religion was brought up I struggled to come up with a way to explain it without letting my feelings get in the way. In the end, the kids were told that religion is like having a favorite color. You love that color and feel with every fiber of your being that it is the best color. My children have come to learn that their "color" may not be the same as their friend's "color" and that is ok. It is ok to have a different "color" and be proud of that "color," but you should never force your "color" on someone or put down someone or their "color." The girls understand that it is all these different colors and all the different beliefs that make the world such an amazing place and it would be a dull world if everyone had the same favorite "color."
Hailey is one of those children that asks questions from the minute she wakes up until well after she should be in bed. It is one of my favorite qualities in her, but it often leads to topics being brought up that I wouldn't expect to talk about with a six year old. Naturally one day she asked why we don't like the other "colors" and this led to the topic of heaven, hell and homosexuality. I am often amazed at the things that come out of Hailey's mouth as she is wise beyond her years. When I explained that many people disagree with two men or two women getting married her response was "if they don't agree with it, then they shouldn't do it. But really, how does it affect them?" I wish I had an answer to that question. She asked me it days ago (and a few times since) and I honestly do not know how it affects others.
Over the last few days I have read hurtful messages in response to Gay marriage from both sides. I do not understand how as adults this is considered ok. Religion is such a personal experience and should be about a relationship between you and your God, not about degrading other human beings. Like I said, I am not a religious person, but everything I have read about God and what I have heard from friends is that God is about loving your fellow man regardless of their sins. I say be proud of your "color" but realize that not everyone feels the same and that is ok.
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