Kristi Meyer is organizing this fundraiser on behalf of Theresa Nelson.
My sweet niece Addison who is only 7 months old has been diagnosed with infantile spasms. The Dr.'s are unable to pin point what exactly is causing the seizures, making it hard to find the right medications to completely stop them. She has been in and out of the hospital with everyone on board trying to get her seizures under control. So far no medication has been successful. Sadly, Cassy recently has had to leave her job to stay at home with Addie to watch over her and to give her, her medications. For those of you who know Cassy and Kevin know that this wouldn't be their idea. So I am doing this for them, because they have so much on their plate right now the last thing I want them to have to worry about is money for bills and gas to get Addie to and from her appointments. Which are over 3 hours away. I also don't want them to have to stress about all the medical bills still yet to come from her hospital stays. Her dad, Kevin has wrote in detail her story so far.
"Addie's story starts on March 18th. On this day Cass noticed some strange twitching along with some eye rolls while Addie was relaxing. After getting off the phone with nurse we rushed her to the Rice Lake ER. Once there the doctor gave her an assessment. When he was finished he concluded that Addie experienced something called a febrile seizure. He explained that these occur in little ones when they spike a temp (which Addie did at almost 103). He explained that as long as we control the fever the seizures would go away.
The following day we again notice the twitching and rushed to the ER again. She was again assessed, and again diagnosed as a febrile seizure. However, during this visit she did not have a temperature. So we were again sent home that evening. 15 minutes after we got home she began to have more "episodes."
The following day we were able to get an appointment with Addison's regular doctor at a clinic a little over an hour from our house. When we arrived to the appointment she again started to have an episode. Her doctor talked with us, and watch a video we had of an episode, and she quickly decided that we needed to go and meeting with a neurologist. She talked with a neurologist at the Marshfield Children's Hospital and the decision was made that we would be bringing her there immediately.
The conversation went from, "Do you feel comfortable driving her?" To "she is going to be transported by ambulance," to "she is going to be transported by helicopter."
These were terrifying words for us, and the helpless feelings began to overwhelm both Cass, and I. As we watched her get buckled into he bed the reality of what was happening just began to sink in.
Addie landed safely at the Marshfield Hospital in about 30 minutes or so, and we followed as fast as we could, and arrived about an hour and a half later.
Then things started happening very quickly. A team of nurses and doctors flooded the room to get blood, and hook her up to monitors. While that was going on the doctors got a detailed history from Cass, and I. Then they rushed her out of the room to begin a CT scan. Thankfully this scan came back normal, along with an MRI. Then we began to talk with her neurologist about what we were seeing and how long this has been going on. Once she saw the video she immediately explained that her hunch was something called infantile spasms. Infantile spasms is a specific type of epilepsy that happens with young kids. There are about 1200 diagnosed cases in the US each year, and can have lasting effects on Addie's development.
She began treatments right away with steroids and anti-seizure meds to try and stop the spasms from occurring. We stayed in the hospital for the next 5 days trying different approaches, but continued to see the spasms. We were approved to get a injection that is pretty powerful stuff to help reduce or even stop the spasms. Addie would get these shots twice a day for the next 2 weeks. Once we were approved to receive this medication we were allowed to leave the hospital and travel 3 hours back home!
She continued to have seizures, but during the first week it seemed to be less and less each day! During the first follow up appointment the doctor seemed hopeful that the injections were beginning to work. However, During the Easter weekend Addie began to experience more and more seizures each day. it went from 2 to 4 a day, up to 8, then 10, and then 12 or so. Then on Wednesday she had about 17. Her doctors wanted us to bring her down to be admitted to the hospital on Thursday April 5th.
This was probably the longest 3 hour drive of mine, and Cassy's life. During this drive Addie was experiencing a seizure about every 10 to 20 minutes, and each episode would last between 30 seconds to 5 minutes. We were admitted that day to try and reduce her seizures once again with more medications. We have a plan to continue to try and reduce or even stop the seizures in place, but she continues to struggle each day with this.
It has been very hard to watch our little girl through all these episodes. She does not seem to be the same little girl that she was about 4 weeks ago. We miss seeing her smile, and hearing her giggles. We hope that each new day will bring that beautiful smile back to us. We would like to thank all of our friends and family members for helping us, and praying for us. Please keep the good vibes coming. I will try and keep this update as best I can over the following weeks."
If you can please help out my sister and brother-in-law during this tough time my family and I would greatly appreciate it! If you are unable to donate, that is okay! Sharing alone and spreading the word is so much help too! Thank you everyone and I will give updates when I can.