Spring 2014

This Spring was a rough one for Sam. Starting in January, she started getting nursing services due to her uncontrolled seizures. Right when we started nursing services, I remember feeling so guilty which only increases as the first month went by without any seizure activity. She had just had a medicine change in December when she had several in one week. I felt like we most likely had finally found the right combination and right when nursing had started. My guilt went away the first time she had a seizure with a nurse around. I was actually with them that day. We were on our way to get Botox injections, casts and a sedated MRI. She had fallen asleep in the car and we looked back to see her in a seizure. So on the side of the major highway I pulled off and administered emergency meds. I had always feared it happening. It was stressful and horrible BUT it did teach me that I could live through it. We got he seizure stopped and once we got to the hospital we waited quite a while before they would let her have the procedures. After this seizure her episodes steadily increased with medicine increases all spring. Until the night of March 19th when she went into a seizure that we just couldn't get stopped. It was the very first seizure that would stop for seconds then start back up again. She was just playing in her kitchen with Gwen when it happened. I had asked Gwen to bring me her planner for school so I could sign it and when she came back upstairs Sam was seizing. We got it stopped and it started back up seconds afterward. It did this several times in the ambulance and in the ER. Overall it was a 4 hour seizure. It wasn't full on for 4 hours with all limbs moving but it would move around to just her eyes or her finger. They just kept giving her meds and she kept seizing. Once we finally got it stopped they admitted her to the PICU. 5 days later we were about to be released from the hospital and she went into another seizure. Within 15 minutes she threw up, aspirated and had to be bagged for the two hours she kept seizing. The hospital staff was great and I was SO thankful that at that moment they had the 6th floor rooms so that almost immediately she was in the PICU where she was needed to be. It took 15 days after that to get her to where we could bring her home. We were extremely worried about her because she had many setbacks after the second seizure including major issues with speech. We did a major medicine change in the hospital and went 6 weeks seizure free. Then they started back again just like so many times before. We went up on medication a few times and even landed a few day stay in the hospital for over medication. Her doctor put in orders to have her levels tested before we ended up in the hospital because of the way one medicine reacted with another. We have at least gotten her meds on an okay level at the current time but they are still not completely controlling her seizures and we are planning on starting a modified Atkins diet next week. We are looking into getting Sam a seizure response dog because she can't be left alone at anytime. The main problem is that they are very expensive and it usually takes months or years to get one. If I am with Sam, I feel horrible even going to the bathroom in fear I might come back to her seizing. It is a lot of stress on Gwen because if she is home she helps us when I need to cook meals or clean up around the house. Gwen loves being with Sam but she has been with her when she has started several seizures now and that is a lot of a 9 year old to constantly live with. Often times when Sam seizes she drools excessively. Since 50,000 people die each year from seizures, mostly from drowning, we have to be able to get her emergency plan started as quickly as possible. Seconds count to us! A seizure alert dog could be that for us to be her companion and to alert us as soon as it starts, which is mostly while she sleeps. (Yes I get little to no sleep at night.) Please pray for us as we venture into to this new diet with Sam and as we seek direction for a dog. I can't even begin to thank you all for your support through the past few months. Your love, support and prayers are simply amazing and I thank God for blessing us with such amazing people. God is so good to us for bringing Sam though some tough times and I know He hold her in his hands every minute. 

Here are some photos of Sam's first day of preschool this spring. :)