10yrs old Jan 2010-Aug 2010:
In Feb 2010 we had noticed some changes in Jordan. His moods had changed; he wasn’t the happy go lucky boy he had been for years. He was moody and seemed VERY antisocial. He seemed to be getting ill more often but there was no reason for his illnesses. He didn’t seem to be getting colds or flu’s but he would go 2 or 3 days without keeping food down and then he would be fine for a few days. We also noticed at this time Jordan would stare off into space for long periods of time and we could not bring him out of one of these episodes. We had called his paediatrician and made some inquiries but were waiting to hear back. On a Saturday afternoon I talked to Jay and said Jordan hadn’t kept anything down for 3 or 4 days and these episodes seemed to be happening quite often 20+ times a day and I thought it was best we didn’t wait for answers anymore. We needed to take him to emerg. So off we went and of course hours and hours later we were admitted to the hospital. Just as we had expected Jordan had started to have petit mal seizures. He was started on some seizure medication and they ran a bunch of tests to make sure his shunt was working well. We were told the seizures could have started as a progression of his disability, because of puberty or a number of reasons. There was nothing we could do about it but treat the seizures and try and find out why he wasn’t able to eat anything. Jordan had lost almost 10lbs in this short timeframe of 1-2 weeks. He was only 38lbs at 10yrs old to begin with; he couldn’t afford to lose weight. The doctors told Jay and I Jordan’s stomach could be failing and we should prepare for anything. I had many friends come and spend countless hours at the hospital with me so that Jay could focus on the other children and make sure their school work was not hurting and they knew they still had their parents support for anything. Jay and I had long talks and cried many times and we always finished our talks with we will deal with whatever Jordan needs us to together and as a family. The shunt tests all came back ok and once the seizure meds started working Jordan started eating and keeping food down. There was nothing wrong with his stomach he just wasn’t feeling well from the seizures so he wouldn’t eat and when he did he would throw up. After a week of being in the hospital we were happy to go home and be a family again. It was a rough week but we once again made it through. We kept Jordan home from school for 3 weeks to make sure the meds were starting to work and he was gaining some weight back. Jordan was very tired and slept most of these 3 weeks. Slept and ate lots. Jordan and Zander have become buddies, well as close to buddies as they can be with Jordan still wondering if we are going to take Zander back for a refund. Zander cries when Jordan gets on the bus in the mornings and Jordan tries to pull Zander’s hair. Zander is a bald baby with just a little fuzz. They sure are cute together though.
Jordan had a pretty good spring and summer he gained back all of the weight he lost in Feb. and March and he was happy to be back in school after the summer vacation. In late Sept 2010 on a regular sat night I was going to bath Jordan before bed and give him a snack. I asked Travis to go sit with Jordan for a minute. Travis came back and said Jordan was shaking and choking. Jay and I ran to see what the matter with Jordan was and he was having a grand mal seizure. We put the 3 boys in the van and drove to the hospital as fast as we could. Jay dropped Jordan and me off at the hospital and he came home to wait for Samantha to get home. I told him I would call as soon as the seizure has stopped. We walked into the emergency room and the doctors immediately started to give Jordan dose after dose of adivan to try and stop the seizure. After 45 minutes I asked the doctors why it wasn’t stopping and what else could they do to help Jordan. The doctor looked at me and said he was doing everything he could and they had to make sure they didn’t give him too much medication too fast. After 50-60 min the seizure had finally stopped. The doctors and nurses looked exhausted. Poor Jordan had 6 IV’s in that time and many doses of adivan and dilantin. He too was exhausted. I had a friend show up to keep me company as I had called Jay and told him everything was fine and Jordan just needed to sleep. I told Jay to stay home and get some rest and make sure the other 3 kids got rest as I had no idea if we were being admitted or if we would be discharged in several hours. Jordan slept and slept, the ER doctor was amazing he came in and talked to me every half an hour and made sure we were ok, he checked on Jordan often and finally he said we might as well take him home to sleep off the meds and the after effects of the seizure. Again we left with little to no information though. Jordan has an appointment on Oct 18 2010 with his neurologist so maybe then we will find out some answers. We know Jordan’s life expectancy is not great and we know every minute we get with him is a minute we cherish but some kind of answers would be nice some day. I think 10 years proves I have been patient.
This is our special family, we love them all and we welcome all of our friends into our home as if they are part of our family. I am writing this so we have something to look back on when Jordan is no longer with us and we can remember all of the parts of his life. I want all of our friends to read and enjoy Jordan’s journey as painful as parts of it were and are going to be. He is a strong lil man and he gives me strength in ways only I might understand. We have been to battle together as a family and we will continue to fight. I have not always had the support from some people who should have been there but as I see it, it is their loss not to be involved in someone as special as Jordan. It is not every day we can say we have seen an angel and I believe I get to see that every day within Jordan. As all of our close friends and family knows Jordan fell in love with Movies and TV at the hospital when he was 1 yr old and he still loves TV and movies. Jordan has his own TV and DVD player in his room and he loves to sit and watch and he laughs and squeels in delight.
Meda J
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