DelanaAndKyra
Mouseketeer
- Joined
- Aug 13, 2012
- Messages
- 75
Hi my name is Delana and I am a single mom to a beautiful little 4 yer old girl named Kyra.
Kyra was born a healthy baby and then at 7 weeks old got very sick. I found out after a horrible experience going in to the ICU that she had a heart problem called dilated cardiomyopathy with aortic insufficiency. She proved what a fighter she was and after a couple of months of struggling she did amazing for 2 years with just some pneumonias and colds every once in awhile.
In the summer of 2010 things started to change again for Kyra. She was sick all the time, she had a low grade fever almost daily, she had a mysterious rash that kept coming and going on her body. She had many ear infections and many many chest infections and pneumonias. In september of 2010 she lost all balance, could barely stand, was very very sleepy. It turns out that the mysterious rash was a viral infection brewing in her body and caused ost viral cerebral ataxia. 2 days after diagnosis i found her in her crib not breathing. She came back around again and seemed ok for awhile as far as balance went. She was later diagnosed with asthma, malabsorbption, a gene dupication that we are still trying to figure out and constipation issues.
During 2011 Kyra started complaining of headaches, she was having random fainting as well. They did an EEG that came back clear and decided to do an MRI. They discovered she has chiari malformation type 1. in February of 2012 she had a repeat MRI which we were told was no change. She began having more frequent fainting spells and then in June she become unresponsive for over 10 minutes and decided to let a neurologist to take a look as a second opinion. It turns out that her chiari malformation had gotten worse and she now had a syrnix as well (build up of spinal fluid in the spinal cord). She was actually supposed to have the chiari decompression surgery today but was rescheduled for next Friday.
All of this is why we contact the Make A Wish foundation to have Kyra have her wish to go to Disney world in May of 2013 and meet the princess'. She was approved Just before Christmas and we have been enjoying the experience of having Make a Wish in our lives. We are very excited about being able to go on this trip and just get a break from the constant doctors and constant appointments.
DATE CHANGE!!!!! We are now going November 24th, 2012- December 1st, 2012!!! Wooohoooo!
Kyra was born a healthy baby and then at 7 weeks old got very sick. I found out after a horrible experience going in to the ICU that she had a heart problem called dilated cardiomyopathy with aortic insufficiency. She proved what a fighter she was and after a couple of months of struggling she did amazing for 2 years with just some pneumonias and colds every once in awhile.
In the summer of 2010 things started to change again for Kyra. She was sick all the time, she had a low grade fever almost daily, she had a mysterious rash that kept coming and going on her body. She had many ear infections and many many chest infections and pneumonias. In september of 2010 she lost all balance, could barely stand, was very very sleepy. It turns out that the mysterious rash was a viral infection brewing in her body and caused ost viral cerebral ataxia. 2 days after diagnosis i found her in her crib not breathing. She came back around again and seemed ok for awhile as far as balance went. She was later diagnosed with asthma, malabsorbption, a gene dupication that we are still trying to figure out and constipation issues.
During 2011 Kyra started complaining of headaches, she was having random fainting as well. They did an EEG that came back clear and decided to do an MRI. They discovered she has chiari malformation type 1. in February of 2012 she had a repeat MRI which we were told was no change. She began having more frequent fainting spells and then in June she become unresponsive for over 10 minutes and decided to let a neurologist to take a look as a second opinion. It turns out that her chiari malformation had gotten worse and she now had a syrnix as well (build up of spinal fluid in the spinal cord). She was actually supposed to have the chiari decompression surgery today but was rescheduled for next Friday.
All of this is why we contact the Make A Wish foundation to have Kyra have her wish to go to Disney world in May of 2013 and meet the princess'. She was approved Just before Christmas and we have been enjoying the experience of having Make a Wish in our lives. We are very excited about being able to go on this trip and just get a break from the constant doctors and constant appointments.
DATE CHANGE!!!!! We are now going November 24th, 2012- December 1st, 2012!!! Wooohoooo!
Looking forward to reading about her wish adventures as they unfold.
My heart and prayers are with you both. 
