The last few months have been so difficult for us and we feel as if we are pulling away from some of our friends because we don’t want to be “Debbie Downer” and “Negative Norman” . We know our friends understand and are there for us but who really wants to be around someone that is always stressed out and down in the dumps. Jay and I decided we have nothing to hang our heads about, we do the best we can in caring for all 4 of our children and we are going to celebrate their lives and try our hardest not to dwell on the negatives. I can honestly say I wouldn’t wish what we are going through on anyone but the days that Jordan smiles at us makes the hard days seem to fade away!

In the next month we have Travis’ grade 8 grad, Sam’s grade 12 grad and prom, Jay’s birthday, Travis’ birthday and Zander’s birthday....I will be posting more pics soon J

May 2012

Well I wish I had some more good news but Jordan likes to keep me on my toes....
May 14, 2012, Jay had just been back to work 1 night after 4 weeks off on stress leave. I think everything had finally caught up to him. Jordan’s health, dealing with trying to work while worrying about his family, stress etc. He said he felt a bit better after a few weeks off but was ready to return to work. Jay got home at 7:45am and I went to wake Jordy up for school, he seemed very tired but he just doesn’t want to wake up some days. As I was changing Jordan’s diaper and making his breakfast for school he started another seizure. His whole body was convulsing and his eyes were rolled back in his head. I knew this was going to be a big one. Travis went upstairs to get Jay from the bathroom as I laid Jordy on the floor on a blanket and started to time the seizure.  After 5 minutes we gave him the rescue meds and after another 5 minutes we called the ambulance.  The ambulance arrived and we recognized the EMT from the ambulance ride in February. He was great and grabbed Jordan carried him to the ambulance and off we went. As we arrived at the hospital the trauma unit was in emerg waiting for us. They gave Jordan another 2mg of lorazepam and started the dilantin via IV right away. After 65 minutes the seizure finally stopped. Throughout the morning we saw several doctors and nobody could seem to give us any answers as to why the seizures are getting worse. Jordan was sent up to the floor and admitted. We waited all day to see his neurologist and he never came. Finally around 7pm I needed to come home to see the other kids before bedtime and to shower and eat myself. When I got home I cuddled Zander and talked to Sam and Travis about their upcoming graduations. Sam from grade 12 and Travis from grade 8. I fell asleep on the couch and didn’t wake up till morning. Jay and I went straight to the hospital for what we knew would be a long day waiting to see the specialists. Jordan’s genetics specialist came to see me and asked me to sign consent to proceed with the next steps in his DNA testing for FG Syndrome and a few other disorders they hadn’t tested for yet. We finally got to see the neurologist and he spent a good hour with us answering questions etc. Jordan’s meds were increased and he was given a new rescue med that we had to learn how to administer since it is only available in a syringe and is usually only given once at the hospital. He now will be given 6mg of Midazolam after a 5 minute seizure and then another 6mg after 10 minutes and then call the ambulance if it doesn’t stop.  I guess we are at a point where we have to try anything to get these seizures to stop. Jordan’s neurologist was comfortable with us taking Jordan home as he knew we would care for him and allow him the time to recover he needed. Since last week Jordan has been very tired, sleeping lots and not keeping very much fluids down. He is still trying to recover from this seizure and doesn’t seem to be bouncing back very quickly. Jay and I are so appreciative of all of the support from friends and family. Tonight for dinner I made Jordan mashed potatoes and gravy his favorite and he ate about 1/3 of a portion that he usually would.  Better than nothing and day by day he will get better.

March and April 2012

March 2012 was a good month, No large seizures but the petit mal or absant seizures seemed to increase slightly towards the end of the month. March we had beautiful weather and we spend a lot of time outside.

April 2012 was a great month, Jordan got to go to a few baseball games and he had so much fun. We got through Easter and my birthday without any events happening.  Jordan loves going to go watch Jay and the boys play baseball, he loves the fresh air, the sound of the ball hitting the bat and the excitement of the game. We took Jordan out to a Sunday of a tournament and he got to watch several games that day.  Funny story the baseball diamonds they were playing at the weekend were made of crushed clay and it was a bit windy out as well. We went to put Jordy in the van to come home and we noticed through the wind and his drool it looked like he had a bad spray tan. Poor guy and his wheelchair were covered in orange dust. Zander had been playing in it all day as well so I knew they both needed baths before bed and then I would have to scrub the tub after. I can deal with orange dirty kids and a dirty bath tub to have days like that though. I think we all had fun!! <3

The end of Feb 2012

The same night I finished updating Jordan’s blog we had another episode. A seizure that lasted an hour and 20 minutes.  8pm and as I was undressing Jordan to get him ready for bed he started to seize. We gave the rescue meds and they didn’t help at all so we called an ambulance. The ambulance was here in a hurry and off to the hospital. I had just said goodbye to a house full of guests as we were having our annual Daytona 500 party and the race was cancelled due to rain. To spend a day full of cooking and entertaining to now a night in emerg.

We got to the hospital and they gave another 4mg of lorazepam and the seizure didn’t stop so they started the IV dilantin. After an hour and 20 minutes it finally stopped.  They decided to send him to the PCCU (pediatric critical care unit) to be observed for the night since his heart rate had increased so much and his respirations were very low they were worried about a stroke or him not getting enough oxygen since he was highly medicated. At 4am the nurse told me to go sleep in the quiet room where the doctors or parents can grab a few hours rest. It is a small private room attached to the PCCU. It has 2 beds that are basically a wooden box with a 3” piece of foam on them. I went in to lay down and found a plastic pillow and a sheet....needless to say it was likely the best sleep I was going to get either way.  I woke up at 7am and was worried so I went back into Jordan’s bed at the PCCU and he wasn’t there. They told me they had put in a NG tube to give him some nutrition while he was sleeping since he sleeps for days and he woke up and was happy and breathing well so they sent him up to a room.  I went up to the 6^th floor of the hospital and as soon as I got off the elevator I could hear Jordan and he was not happy. He was very grumpy and screaming.  I went into him room and they had him in a crib. Could be why he was screaming but could of been that he was feeling crappy. I talked to the nurse and got him some food and turned on cartoons for him. When the doctor came in to see him they were shocked he was so wide awake and eating. He never bounces back that fast. They said as long as we felt comfortable enough with how he was doing we could go home as they couldn’t do much more for him. His seizure meds were increased again and we were given another prescription for rescue meds and home we went. Within 3 days Jordan was eating full meals, sleeping great and back in school.