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.

Jordan's Journey Nov 2011-Feb 2012

Well what an eventful few months Jordan has had. He started throwing up and not sleeping very well again. (Not like we have really slept in 3 years anyway) We called his neurologist to make an appt to see him and were told March was the soonest we could get in. Within 2 weeks Jordan's seizures had increased significantly from 2-3 per day to 8-10 per day. I called the neurologist office back and they got us an appt for Dec 22, 2011. Just a few days before Christmas but we will take it, better than March.

Jordan stayed the same until his appt, when we got to the appt we spoke to the doctor about the changes in Jordan as well as his mood changes. Jordan is always happy and he became very grumpy and antisocial over the last few months. The Neurologist decided to change his meds to Divalproic and told me Jordan must have his liver checked every few months because if his valproic acid levels increased too much it could cause permanent liver damage or liver failure. This scared the crap out of me but we were out of options. Jordan needed something to help with the seizures and sleep. The doctor also nicely gave me a verbal spanking for not calling him earlier to discuss the sleeping issues. As he said a mother of 4 can’t go 3+ years with 4-5 hours sleep per night. (Well I knew I was a little grumpy but thought I was doing fine) I explained that Jordan went to sleep each night around 1-3am and we had a toddler that wakes up at 6am. The doctor explained that this would not do and I would be no good to any of my kids especially Jordan if we kept this up, he promised me we would figure out a way to get Jordan to bed at a normal time so everyone could sleep better. We left the office with a script for new meds for Jordan and a requisition for blood work every 4 months to check his liver. We had to wear Jordan off of his old meds as he started the new meds and by Jan 7^th he would be completely off his old meds.

Jordan seemed to take to the new meds very well. The throwing up seemed to really slow down, the seizures were back to a minimum and he was sleeping from 10pm every night until 7am every morning. We thought this was a miracle drug that helped everything. I was happy and getting lots of sleep and so was Jordan. The first few weeks of January were tough as Jay’s grandmother passed away and it was rough on the whole family but Jordan still seemed to be thriving and getting better every day.

January 18^th I had tucked the kids all into bed and was reading some articles on the internet. I went up to check on everyone about 10:30pm like I do every night and all was good...4 kiddies all sleeping in their beds. I came back down and started reading the news online and within what seemed like a few minutes noticed it was 12:30am. I decided I had better go to bed but before I did I was going to go in and kiss Jordan since it was now his 12^th birthday (Jan 19 2012) As I got to the top of the stairs I knew something was not right, I could hear noises coming from Jordan’s room. I opened the door and he was in full grand mal seizure. Choking on his tongue had lost all control of his bowels and his whole body was convulsing. I picked him up gently and carried him downstairs, laid him on the couch on his side and made sure he could not hurt himself in any way. I grabbed the phone and called 911 as I ran upstairs to wake Samantha up. I explained to the 911 operator what was happening and that I didn’t know how long he had been seizing for but that his last grand mal seizure lasted 57 minutes. They assured me the ambulance was on their way. I explained to Samantha who was scared out of her wits that everything would be ok and I needed her to call dad at work and tell him what was going on. I got dressed and the ambulance arrived. Jordan and I left promptly and I hugged Sam and felt so bad leaving her so upset and not being able to comfort her. I hope one day the other 3 kids understand if it was them I would have left with the ambulance just as fast as well.  I was scared but trying to be strong so Sam would calm down. We drove to the hospital doing speeds I don’t even want to say. Were cut off by a taxi driver (love taxi drivers ugh) and I could hear the EMT in the back patching through to the hospital saying we were enroute and needing the trauma bay open with the resuscitation team waiting. That was it, I couldn’t hold it in anymore and I started to cry softly and quietly. Again trying to be strong. We arrived at the hospital and were rushed into the trauma room. Immediately we were surrounded by so many nurses and doctors trying to help Jordan. I answered all of their questions calmly all the while looking over their shoulders to see if they had got the seizure to stop. Jay showed up at the hospital within half an hour and Jordan was still seizing when he showed up. As soon as I saw him I started to cry and we both looked at each other knowing if they didn’t get this to stop soon what the outcome could be. Jordan continued to seize for an hour and 22 minutes that we know of. It was the scariest hour and 22 minutes of our lives. During that time Jordan was very close to cardiac arrest and the resuscitation team was standing at the head of the bed the entire time. His O2 levels were dropping below 60% and his heart rate was skyrocketing to 190 beats per minute plus and his body temp raised to 109.2F. I couldn’t watch the monitors anymore; it felt like I was watching my son die in front of me. They ended up giving him several doses of ativan and Dilantin before he started to calm down.  Once they got the seizures to stop Jordan went for a CT scan, chest x-ray, MRI, lots of blood work, 3 failed spinal taps and a shunt series to see if they could find the cause of the seizure. Everything came back negative accept the blood work came back positive for an infection; they started him on aggressive antibiotics assuming it was an infection in his brain fluid. Not knowing how he would get an infection in his brain we just agreed to more testing over the next few days. Jordan was admitted after 14 hours in emerg and he was sleeping well in his bed. Friday was pretty uneventful as he was exhausted and slept the whole day and night. Saturday he was awake for a few hours and even gave us some smiles. Saturday afternoon the 48 hour blood cultures came back positive for an infection again so we kept Jordan on the antibiotics and they had paged infectious disease to come see us. Saturday evening I noticed he was acting strange and told his nurse we needed to watch him as he was moaning in pain and rubbing his head. That was approx 5:30pm. 6:30pm Jordan had another seizure, 8:30pm another seizure and 2 more back to back at 12:30am Sunday morning. I stayed at the hospital all weekend on a cot so I was close by to monitor Jordan as his O2 had dropped significantly, heart rate had jumped again....basically it was happening all over again.  Sunday Jordan rested and slept all day, he didn’t wake up at all, Monday was much like Saturday he woke up for several hours, gave us a few smiles and slept. Monday night/Tuesday Morning between 2-4am Jordan had another 3 seizures. Jay came home from work and we went back to the hospital to be with Jordan. Words cannot describe how many tears we shed in these days and nights. The only feeling you can have going through this without any answers was that your son is slowly dying and there is nothing you can do to help him. For the next 2 days Jordan slept, the doctors said his valproic levels in emerg were 210 and the safe range is 350-700, by Monday his levels had dropped to 114, Tuesday morning they doubled his doses of the divalproic to see if we could get him into the therapeutic range and control the seizures. Wednesday the infectious disease doctors came to see us and told us there was no infection, the blood samples were negative not positive and it was a contaminated sample. We had just given Jordan 6 days of a very aggressive antibiotic for no reason, because someone contaminated his blood sample. Frustrated to say the least. Thursday the doctors came in and told us as long as Jordan stayed seizure free another 24 hours we could bring him home as there was nothing more they could do for him there. In the 8 days we were in hospital we had many visitors and people supporting us, from friends and family, I can’t thank you all enough. Sad to say the one person that should have been there for Jordan was not but maybe that is for the better.  Friday afternoon we came home from the hospital. Jordan was to be kept on 24/7 emerg watch and needed to stay close to the hospital for at least a week.

It is now Feb 24, 2012 and Jordan has been back in school for 2 days after over a month off. We have rescue meds at home to give him if he goes into a large seizure again prior to calling the ambulance. He is not back sleeping as he was before the seizures but we will get there....after all, all he has done for a month is sleep so I am sure he is caught up even if I am not.

Sitting in a house watching your child sleep for a month straight is not my idea of a good time. Feeling like you are holding your breath waiting for something to happen is stressful. I don’t like to ever put my worries on others nor do I ever want sympathy from anyone but no parent should ever have to go through what we have went through with Jordan. I fear this is just the beginning and it scares the hell out of me. I know so many people think I am so strong, I am not, I cry, I am a mother I have feelings and my heart breaks I just hide it well from others. I guess this blog is as much for me as it is for Jordan. I can write my feelings, cry and get it out without actually having to talk to someone about it.  I love to help others and be a shoulder to cry on but I don’t want to be the person crying on someone’s shoulder. Please keep our family in your thoughts and send positive energy our way. I have never asked for Jordan to be normal but I am asking for him to stay with us as long as he can. I am not ready to let go of the fight and neither is he. Seeing him back in school this week has made me so happy to see the smile on his face when the bus pulls up in front of our house. I cannot imagine a day without seeing that smile. <3