Once upon a time there was a little girl named Brooke. Her mama called her little ladybug. Even as a baby she was dainty, delicate, and yet strong and graceful. Her mama admired her loveliness, caught glimpses of beauty where ever Brooke danced.
On this particular hot, sticky summer night...Brooke smiled in the warm breeze of evening. Her mama stared at her, drinking in her sweetness. There she was dressed in her pale pink monkey pj's. Brown boots only halfway on her feet, scrunched up around her ankles. Her hair tousled, hair bands around her wrist. She had a bit of sauce from dinner at the corners of her lips, dusting her nose where little freckles. This simpleness yet craziness of her made mama's heart swell with love! How could such a miracle be there dancing in the fresh cut grass. Brooke picked dried flower petals from the ground. Ripping them, she tossed them carelessly into the air. She twirled as the petals danced on the wind around her.
Mama set back admiring this sight. Thanking God for the Miracle of Brooke. Thanking Him for all the ways He had faithfully carried her through every storm. How He continues to heal her, and protect her. Just 1 week ago, He answered yet another prayer heavy on Mama's heart. He healed one more of Brooke's needs. He made it possible for her to be closer to a functioning 7 year old body. Her smile reflects a lightness in the summer heat. Mama sees it, she knows her baby is strong....is a survivor. In one glimpse of a moment Mama can see her babe, her bug and rejoice for all that she is and will be. A summer time miracle is a sight to see.
A blog dedicated to my daughter Brooke who has Chiari I Malformation
Monday, June 24, 2013
Sunday, June 9, 2013
Answers
I know many of you have been praying for some more answers for our fam. We arrived home later last night, and were completely wiped out from 3 days of driving and appointments. The weather was horrible with non-stop rain on Thursday and Friday. As Chandler said, "We were all soap n wet!" Again so thankful for the generosity of the Ronald McDonald House! It is so nice to have a safe, comfortable place to be! Honestly I did not hear what I thought I would hear from the doctor. My head is still swimming.
I will start with Brooke first, as she is the success story! Her MRI and incisions look great. She still has an enlarged pannus muscle in her neck. She is just under the red zone for instability. Which means she is unstable but does not have to have a fusion now. So the hope is as she grows this may right itself. If not, she will need a fusion down the road. For now, she is supposed to work on strengthening her core and wearing her collar in car and when she has a high chance of injury. Brooke still has a long list of things to avoid for the rest of her life. Good news is....she is so much better than she was! She is living a life we never thought she would have. Of course her and Dr B teased and laughed with each other. He leaned on his hand and smiled at her with such love. He commented, "seeing her makes me think I am doing a little good in the world." I assured him that he is our hero! Without him our sweet Brooke would still be in constant pain and maybe worse. It is always good to see them together!
On to Aidan. Aidan has what is called a Chiari Variant. It is not a true Chiari Malformation because it is a smaller amount hanging from his skull than a "typical" chiari. As Dr B says(and many agree with this), if your brain is hanging from your head than it is not normal! It can cause the headaches he has, and many other issues. The other problem is Aidan has a retroflexed odontoid. This is the bone that runs in front of the spinal column. It should be fairly straight up and down. His is bent significantly backwards. What this means is a brain decompression on Aidan is much more tricky. Thankfully, Aidan does not need a decompression. Right now we will manage his headaches with medication. But if his symptoms become worse and he does require a decompression, he will also need a fusion at the very same time. Otherwise his head will be completely unstable. So right now we will watch and see. We are going to do all we can to protect his neck. This means no roller coasters, no trampolines or bouncy houses, and trying to avoid anything that will jar his neck.
If this was not enough info, I also learned more about me. I found out that I also have a Chiari Variant. Mine is larger than Aidan's and is a strange shape. My cerebellar tonsils are chubby(even my brain has gained weight! ;) ). I also found out that the back of my skull is very small and makes everything very tight. There is no room for the CS fluid to get to my brain. Basically my brain is plugging the hole. The only way to fix this is with a brain decompression. Now I do not have to have the surgery. I will not die without it. But I will never feel any better, and will probably get worse. For those of you who know me, I have slowly deteriorated over the past 4 years. I can't even imagine what 4 more will look like. At the same time, another major surgery was not on my to-do list. In fact I wonder if I can even do this! As the doc said logistics are the hardest! This surgery is a 4-5 day stay in hospital. Than another 2 days local before I travel. And by travel he meant fly. Four days local healing if we drive home. And the drive has to be done over 2 days. Two weeks of needing a constant helper when I get home. And a 2-4 month complete healing. Not only is this time...it is a huge financial strain as well as needing to plan every detail out. I did a very poor job of healing last time. I have to take this more seriously.
My mind is racing on all the details. I am trying to let go, and just pray. My mind is frantic though. I really feel I need a second opinion too. One of the things that concerns me is my last surgery was a c1-c2 fusion. It is common in people with EDS to also need a cranial fusion after decompression. As of now I do not need this. But the chances of me needing it after surgery are high. I wold rather do this all in one sweep. But this is not what was recommended. I just do not want a 3rd surgery. There is another amazing doc in Virginia. I almost went to him before my last surgery. I backed out because of finances and just feeling horrible. I can't do that this time. I need to see what he says. Again this is all so much info. I am physically and emotionally exhausted. A trip to NY is complete torture, and I am paying for it. I thank everyone for your prayers and help! We are so blessed. Sorry this is a pretty straight forward post. My heart is sad and I just do not have the energy to write more. I just need some time.
I will start with Brooke first, as she is the success story! Her MRI and incisions look great. She still has an enlarged pannus muscle in her neck. She is just under the red zone for instability. Which means she is unstable but does not have to have a fusion now. So the hope is as she grows this may right itself. If not, she will need a fusion down the road. For now, she is supposed to work on strengthening her core and wearing her collar in car and when she has a high chance of injury. Brooke still has a long list of things to avoid for the rest of her life. Good news is....she is so much better than she was! She is living a life we never thought she would have. Of course her and Dr B teased and laughed with each other. He leaned on his hand and smiled at her with such love. He commented, "seeing her makes me think I am doing a little good in the world." I assured him that he is our hero! Without him our sweet Brooke would still be in constant pain and maybe worse. It is always good to see them together!
On to Aidan. Aidan has what is called a Chiari Variant. It is not a true Chiari Malformation because it is a smaller amount hanging from his skull than a "typical" chiari. As Dr B says(and many agree with this), if your brain is hanging from your head than it is not normal! It can cause the headaches he has, and many other issues. The other problem is Aidan has a retroflexed odontoid. This is the bone that runs in front of the spinal column. It should be fairly straight up and down. His is bent significantly backwards. What this means is a brain decompression on Aidan is much more tricky. Thankfully, Aidan does not need a decompression. Right now we will manage his headaches with medication. But if his symptoms become worse and he does require a decompression, he will also need a fusion at the very same time. Otherwise his head will be completely unstable. So right now we will watch and see. We are going to do all we can to protect his neck. This means no roller coasters, no trampolines or bouncy houses, and trying to avoid anything that will jar his neck.
If this was not enough info, I also learned more about me. I found out that I also have a Chiari Variant. Mine is larger than Aidan's and is a strange shape. My cerebellar tonsils are chubby(even my brain has gained weight! ;) ). I also found out that the back of my skull is very small and makes everything very tight. There is no room for the CS fluid to get to my brain. Basically my brain is plugging the hole. The only way to fix this is with a brain decompression. Now I do not have to have the surgery. I will not die without it. But I will never feel any better, and will probably get worse. For those of you who know me, I have slowly deteriorated over the past 4 years. I can't even imagine what 4 more will look like. At the same time, another major surgery was not on my to-do list. In fact I wonder if I can even do this! As the doc said logistics are the hardest! This surgery is a 4-5 day stay in hospital. Than another 2 days local before I travel. And by travel he meant fly. Four days local healing if we drive home. And the drive has to be done over 2 days. Two weeks of needing a constant helper when I get home. And a 2-4 month complete healing. Not only is this time...it is a huge financial strain as well as needing to plan every detail out. I did a very poor job of healing last time. I have to take this more seriously.
My mind is racing on all the details. I am trying to let go, and just pray. My mind is frantic though. I really feel I need a second opinion too. One of the things that concerns me is my last surgery was a c1-c2 fusion. It is common in people with EDS to also need a cranial fusion after decompression. As of now I do not need this. But the chances of me needing it after surgery are high. I wold rather do this all in one sweep. But this is not what was recommended. I just do not want a 3rd surgery. There is another amazing doc in Virginia. I almost went to him before my last surgery. I backed out because of finances and just feeling horrible. I can't do that this time. I need to see what he says. Again this is all so much info. I am physically and emotionally exhausted. A trip to NY is complete torture, and I am paying for it. I thank everyone for your prayers and help! We are so blessed. Sorry this is a pretty straight forward post. My heart is sad and I just do not have the energy to write more. I just need some time.
Wednesday, June 5, 2013
headed out
tomorrow we head out for new york. aidan, brooke, and i all have appointments on friday. i am going to make this post short and sweet because tonight i am struggling. I know some have asked for prayer requests so just wanted to share. thank you to all who are so faithful in loving on our fam! it means so very much.
aidan- this will be the first time he sees dr b. hoping to find out how to control his headaches and help him not hurt as much.
brooke- trying to find out if collar is still helping. she has been having some choking episodes on food and liquid. just checking to see if related to her chiari or not.
me- first time i will see dr for myself. i am really praying for some answers. i have gone from bad to worse. i am barely able to drive and most days am having a very hard time walking as my legs feel like they weigh 500 lbs. My vision is very bad and am wearing my collar because of the excruciating pain in my head. I figure he can tell me 3 things- bad(he can do nothing), good(we can try something new), bad(more surgery). whatever he says i know this is the path chosen for me. i will so my best to face with strength and grace.
thankfully my wonderful dad took off work and is driving us to ny. the way i feel tonight i would never have been able to drive tomorrow. thank you for continued prayers for us all! We are beyond blessed!
**sorry for typos!
aidan- this will be the first time he sees dr b. hoping to find out how to control his headaches and help him not hurt as much.
brooke- trying to find out if collar is still helping. she has been having some choking episodes on food and liquid. just checking to see if related to her chiari or not.
me- first time i will see dr for myself. i am really praying for some answers. i have gone from bad to worse. i am barely able to drive and most days am having a very hard time walking as my legs feel like they weigh 500 lbs. My vision is very bad and am wearing my collar because of the excruciating pain in my head. I figure he can tell me 3 things- bad(he can do nothing), good(we can try something new), bad(more surgery). whatever he says i know this is the path chosen for me. i will so my best to face with strength and grace.
thankfully my wonderful dad took off work and is driving us to ny. the way i feel tonight i would never have been able to drive tomorrow. thank you for continued prayers for us all! We are beyond blessed!
**sorry for typos!
Monday, June 3, 2013
Scarlet and Scout
I have waited a few weeks to write this post. Honestly I figured most people would find me completely off my rocker. But there is no denying it....we adopted 2 puppies! Ok I will back up a bit and share their sweet story. And give you a chance to fall in love with them too.
We had promised Brooke a puppy last summer. Brooke has a terrible time sleeping. Actually all my kids do. Nights are hard in our house because we are all in pain. We wake up a lot, and have a hard time falling asleep. We thought a puppy would help Brooke to relax and sleep better. First my health was bad, and then many other things happened. We just were unable to make it possible. Then in the Spring, my mom found these adorable bunnies for the kids. Sadly Aidan and Chan had bad allergies with the bunnies around. We found an awesome home for them, much to my relief.
The kids and I started talking about the puppy idea again. I told them I just did not see how it would be possible. We have to have a purebred hypo-allergenic dog because of Brooke and I. Normally these dogs are pricey. Plus most of these dogs need groomed regular basis. None of this is in our very tight budget. As we were talking we thought of our friend's dog. She has a Chinese Crested. These dogs are hypo-allergenic and do not need to be groomed. But I figured they were pretty pricey. I contacted my friend, and come to find out there are 2 kinds of Chinese Crested-hairless and powderpuff. Neither shed nor need groomed. The powderpuff kind is less expensive.
Well in one short day...my friend had located a puppy! She was a little 5-month old powderpuff. We were super excited to go meet her. My mom, the kids, and I took out on our little adventure. When we got there we met our sweet girl but she had this extremely cute brother. They were so attached to each other! We just fell in love with both! I mean how could you only leave with her? My heart was breaking for her little brother being left all alone! I know ridiculous....but true. I texted hubby. I know when he read the text he laughed and shook his head. But of course he responded with, "One why not two? :)" The 2 sweeties rode on Brooke and Aidan's lap the whole way home.
We have just fallen in love with the puppies. They have been little blessings to our family. No maybe we did not need to take both, but Aidan and Brooke sleep with their pups every night. Sure it is an extra expense, but the kids have given up much because of their illnesses. This is something the can love and cherish. These puppies will comfort them in the bad, sick times. So no more waiting....May I introduce Scarlet and Scout!
We had promised Brooke a puppy last summer. Brooke has a terrible time sleeping. Actually all my kids do. Nights are hard in our house because we are all in pain. We wake up a lot, and have a hard time falling asleep. We thought a puppy would help Brooke to relax and sleep better. First my health was bad, and then many other things happened. We just were unable to make it possible. Then in the Spring, my mom found these adorable bunnies for the kids. Sadly Aidan and Chan had bad allergies with the bunnies around. We found an awesome home for them, much to my relief.
The kids and I started talking about the puppy idea again. I told them I just did not see how it would be possible. We have to have a purebred hypo-allergenic dog because of Brooke and I. Normally these dogs are pricey. Plus most of these dogs need groomed regular basis. None of this is in our very tight budget. As we were talking we thought of our friend's dog. She has a Chinese Crested. These dogs are hypo-allergenic and do not need to be groomed. But I figured they were pretty pricey. I contacted my friend, and come to find out there are 2 kinds of Chinese Crested-hairless and powderpuff. Neither shed nor need groomed. The powderpuff kind is less expensive.
Well in one short day...my friend had located a puppy! She was a little 5-month old powderpuff. We were super excited to go meet her. My mom, the kids, and I took out on our little adventure. When we got there we met our sweet girl but she had this extremely cute brother. They were so attached to each other! We just fell in love with both! I mean how could you only leave with her? My heart was breaking for her little brother being left all alone! I know ridiculous....but true. I texted hubby. I know when he read the text he laughed and shook his head. But of course he responded with, "One why not two? :)" The 2 sweeties rode on Brooke and Aidan's lap the whole way home.
We have just fallen in love with the puppies. They have been little blessings to our family. No maybe we did not need to take both, but Aidan and Brooke sleep with their pups every night. Sure it is an extra expense, but the kids have given up much because of their illnesses. This is something the can love and cherish. These puppies will comfort them in the bad, sick times. So no more waiting....May I introduce Scarlet and Scout!
Best Buddies: Aidan and Scout
Sweet Girls: Brooke and Scarlet
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