Jonah turned 4 on December 9th!
He had a follow-up MRI last Tuesday at Duke University Hospital to check his spinal cysts and the patch they put on his dura. The results were amazing! Jonah had his brain surgery 8 weeks ago. In those 8 weeks his cysts are almost completely gone. The patch on his dura has attached perfectly without any leaks. His neurosurgeon is so pleased with his quick recovery and the amount of spinal fluid that is now getting to Jonah's brain. It was a rough drive home by myself with Jonah throwing up the whole way from the drugs, but we made it.
Because of his brain surgery, he is limited in the sports he can play. The surgery weakened his neck muscles and they also had to remove some bone. Therefore, he will not be able to ever play football, hockey, lacrosse, or boxing. A previous nurse told me he was not able to play soccer, but our neurosurgeon corrected that and said he could play soccer. Yea! Of course, this is so exciting to me! We will most likely enroll Jonah in Spring soccer. His neurologist thinks it would be a great outlet for his need for input. Jonah really has a passion for music and singing... I could see him really pursuing that instead of soccer, but a girl can dream!
Some of our latest developments include moving out of our tiny 2 bedroom apartment on January 14 and into a 4 bedroom house. Our neurologist suggested to us that we de-clutter Jonah's space, especially in his bedroom, so he can have a "zen" space to relax and come down from sensory overloads. We have done that, however, the rest of our tiny apartment is driving even ME crazy. I can't even organize, because there is no space to put anything. In the last few months, Jonah has been having a really hard time "coming down" from his sensory overloads. So, we have decided it was time to move into a house with enough space for him to hide and relax from the outside world. It also has a large backyard that he can roam and get his wiggles out.
A downer development is that our medicaid for the kids expires on the 20th of December, and will not be renewed because we exceed the income limit. On top of that, our primary insurance has a cap for the number of services the kids can get in a year, and we have exceeded that. Our "new year" does not begin until July 1, 2012. So, now I have to sign Peyton back up with the county for services they come out to the home to do for which we have to pay for on a sliding scale based on income. I don't like this as much, because they believe in using the items in the home for therapy. I just don't feel like she gets as much out of it as she does at the private facility with all the special equipment. It is what we can afford for now, though. As for Jonah, I have to go back to the Behavioral & Developmental Pediatric Specialist and get him reevaluated for Aspergers. The county does not accept diagnosis from doctors as the end all be all. They will take the diagnosis into consideration, however, if they feel he doesn't have Aspergers, I will have to fight them on it. I have already fought to give him a half an hour a week of OT, but that was pulling teeth. I had them evaluate him twice. They said he was too friendly and made eye contact, so he didn't have Aspergers. SERIOUSLY!? If you wave shiny new toys at a kid, they are going to pay attention to you and be super nice and friendly. They don't do sensory therapy through the county, so the only thing I can really try to petition for is more OT hours a week. I am also going to ask that he is accepted into their Bright Beginnings Program next year. It is a preschool program through the county/school district which gives extra attention & tailors the curriculum to children with special needs. Jimmy and I are not sure how we feel about having him in that program next year since he has done amazing this past year in his "typical" classroom. He has really been forced to come up to the other kids' level to interact. It has been great for him. We are still thinking on that one.
Finally, starting in the new year, our entire little family will be going Dairy Free, Gluten Free, Preservative Free, Dye Free, and Processed Food Free. I know this sounds like quite an undertaking. We did try it for a week with Jonah a couple of months ago. However, we needed to stop, because he needed his blood tested first for his levels of antibodies for gluten. We also wanted to run it by his Pediatrician, Neurologist, and Neurosurgeon. They all agreed it was well worth the trouble. They all have had patients with Aspergers and Chiari Brain Malformation that the change in diet worked wonders for them. We have also had several friends with children with various special needs swear by this diet. All the doctors feel it is worth a shot, especially since his brain surgery has brought out his "true" sensory, hyperactive, severe tantrum self.
Our goal for next year is "No Medical Procedures in 2012"! LOL We joke about this a lot to bring humor to our crazy life. It would be nice to have a drama free year, though. Our prayer is for a year full of regular family outings. Jimmy and I have worked really hard to make things "normal" for Jonah and Peyton. Frequently, one or the other is missing for some kind of medical procedure, test, doctor visit, etc. This is a disruption to a "regular" family flow we are aiming to achieve. I am just really hoping this year is full of boring and normal. I really could use a lot of mornings of: doing crafts with the kids, going to the park, play dates, baking, riding bikes, building forts, or sitting in a tent and reading all afternoon to them. I am so hopeful for that kind of normal with no disruption of "grab your coat; we are late for an appointment!".
In the end, we have been blessed with so many miracles this year! We're so thankful and looking forward to next year!
Jonah had his Christmas party at school. He worked very hard to decorate his gingerbread house!
Peyton is getting around a little more and realizing Jonah eats at the little white table. She refused to be left out, so, she got to sit at her own "table" made of the chair and ate Cheerios with her big brother!
He had a follow-up MRI last Tuesday at Duke University Hospital to check his spinal cysts and the patch they put on his dura. The results were amazing! Jonah had his brain surgery 8 weeks ago. In those 8 weeks his cysts are almost completely gone. The patch on his dura has attached perfectly without any leaks. His neurosurgeon is so pleased with his quick recovery and the amount of spinal fluid that is now getting to Jonah's brain. It was a rough drive home by myself with Jonah throwing up the whole way from the drugs, but we made it.Because of his brain surgery, he is limited in the sports he can play. The surgery weakened his neck muscles and they also had to remove some bone. Therefore, he will not be able to ever play football, hockey, lacrosse, or boxing. A previous nurse told me he was not able to play soccer, but our neurosurgeon corrected that and said he could play soccer. Yea! Of course, this is so exciting to me! We will most likely enroll Jonah in Spring soccer. His neurologist thinks it would be a great outlet for his need for input. Jonah really has a passion for music and singing... I could see him really pursuing that instead of soccer, but a girl can dream!
Some of our latest developments include moving out of our tiny 2 bedroom apartment on January 14 and into a 4 bedroom house. Our neurologist suggested to us that we de-clutter Jonah's space, especially in his bedroom, so he can have a "zen" space to relax and come down from sensory overloads. We have done that, however, the rest of our tiny apartment is driving even ME crazy. I can't even organize, because there is no space to put anything. In the last few months, Jonah has been having a really hard time "coming down" from his sensory overloads. So, we have decided it was time to move into a house with enough space for him to hide and relax from the outside world. It also has a large backyard that he can roam and get his wiggles out.
A downer development is that our medicaid for the kids expires on the 20th of December, and will not be renewed because we exceed the income limit. On top of that, our primary insurance has a cap for the number of services the kids can get in a year, and we have exceeded that. Our "new year" does not begin until July 1, 2012. So, now I have to sign Peyton back up with the county for services they come out to the home to do for which we have to pay for on a sliding scale based on income. I don't like this as much, because they believe in using the items in the home for therapy. I just don't feel like she gets as much out of it as she does at the private facility with all the special equipment. It is what we can afford for now, though. As for Jonah, I have to go back to the Behavioral & Developmental Pediatric Specialist and get him reevaluated for Aspergers. The county does not accept diagnosis from doctors as the end all be all. They will take the diagnosis into consideration, however, if they feel he doesn't have Aspergers, I will have to fight them on it. I have already fought to give him a half an hour a week of OT, but that was pulling teeth. I had them evaluate him twice. They said he was too friendly and made eye contact, so he didn't have Aspergers. SERIOUSLY!? If you wave shiny new toys at a kid, they are going to pay attention to you and be super nice and friendly. They don't do sensory therapy through the county, so the only thing I can really try to petition for is more OT hours a week. I am also going to ask that he is accepted into their Bright Beginnings Program next year. It is a preschool program through the county/school district which gives extra attention & tailors the curriculum to children with special needs. Jimmy and I are not sure how we feel about having him in that program next year since he has done amazing this past year in his "typical" classroom. He has really been forced to come up to the other kids' level to interact. It has been great for him. We are still thinking on that one.
Finally, starting in the new year, our entire little family will be going Dairy Free, Gluten Free, Preservative Free, Dye Free, and Processed Food Free. I know this sounds like quite an undertaking. We did try it for a week with Jonah a couple of months ago. However, we needed to stop, because he needed his blood tested first for his levels of antibodies for gluten. We also wanted to run it by his Pediatrician, Neurologist, and Neurosurgeon. They all agreed it was well worth the trouble. They all have had patients with Aspergers and Chiari Brain Malformation that the change in diet worked wonders for them. We have also had several friends with children with various special needs swear by this diet. All the doctors feel it is worth a shot, especially since his brain surgery has brought out his "true" sensory, hyperactive, severe tantrum self.
Our goal for next year is "No Medical Procedures in 2012"! LOL We joke about this a lot to bring humor to our crazy life. It would be nice to have a drama free year, though. Our prayer is for a year full of regular family outings. Jimmy and I have worked really hard to make things "normal" for Jonah and Peyton. Frequently, one or the other is missing for some kind of medical procedure, test, doctor visit, etc. This is a disruption to a "regular" family flow we are aiming to achieve. I am just really hoping this year is full of boring and normal. I really could use a lot of mornings of: doing crafts with the kids, going to the park, play dates, baking, riding bikes, building forts, or sitting in a tent and reading all afternoon to them. I am so hopeful for that kind of normal with no disruption of "grab your coat; we are late for an appointment!".
In the end, we have been blessed with so many miracles this year! We're so thankful and looking forward to next year!
Jonah had his Christmas party at school. He worked very hard to decorate his gingerbread house!
Peyton is getting around a little more and realizing Jonah eats at the little white table. She refused to be left out, so, she got to sit at her own "table" made of the chair and ate Cheerios with her big brother!
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You guys rock! Truly inspirational!
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