some of this....some of that....

Today in June 18th, 2018.....I have a lot on my mind but will try to keep this short.

It has been a rocky road the last few months with Jordan, he is still not strong enough to be at school every day. He has been going once or twice a week depending how he feels. Summer break starts in a week so hopefully by September he is even stronger and ready for more.

Last week Jordan would have graduated high school with all of his peers if he was a" normal" teen. However because he is Jordan he gets to stay in high school until he is 21 yrs old. I have mixed feelings about this. For Jordan I am so happy he gets the socialization, he gets to be around the EA's and staff that care for him so much, he will meet new students and he will love school. As a mom I mourn the idea that I don't see him walk across a stage and graduate high school, I don't get to see him in cap and gown getting sports or academic awards, I don't get to help him fill out college and university applications and have late night discussions about who he is going to be as he matures.....

HE WILL BE JORDAN!! Yes I am thankful he is here and for all the lessons he has taught me, but YES I am allowed to grieve what will never be, what most parents take for granted and what most students see as a milestone, my son will never reach. It saddens me even if for just a moment before I celebrate the wonderful blessing that is my son.

This is often a reminder for parents that our kids are growing up and soon will be adults and need us less, for me this is a reminder that Jordan's needs increase, he needs me more and there is less and less help for him.

It is bitter sweet, but like normal we will wake up and smile tomorrow and handle whatever the day throws at us. He gives me strength that is undeniable, gives me love that is unconditional and teaches me every day more about life than I can articulate.


I am training for Jordan and my next run together. I fear his jogger might not last many more runs, it's so old and wore down but we are doing it. Of course the natural choice for him and I to start running together again was the London Southern Ontario Epilepsy - Seize the day 5km run. the date also marks the 1 year anniversary of everything changing for Jordan last fall. We are surprised he is still here, his doctors have no answers as to why he is still fighting or how he has the strength but he is and so.....WE RUN!!

In closing I will leave you with something Zander said about Jordan last week. We were in the supermarket and he saw the lottery sign and said wow Mom $60 million is a lot of money, what would you do if you won. We then had a conversation about a house built to accommodate Jordan's needs, luxuries that we can't imagine, super cars, dream vacations etc.....and Zander says...."You know what I would buy Jordan Mom, I would buy him the best doctors, the best researchers and the best medicine in the world so he could talk, walk, play baseball and live like you and me and he wouldn't be sick anymore".....My Heart Is Full!!!

Sorry this post is all over the place, sort of like my brain lately. Sooo some of this and some of that...

Happy News, What does today look like?

March 19^th Jordan had another neuro checkup and everything was good, he has some tone back in his right side even though he still doesn’t move his right leg at all and his right hand movements are not controlled he is healing. Neurologically he was getting better….how did this happen? I asked his doctor if we were in the clear and he said honestly he had no idea, anything could change at any moment, because they have no idea what is causing Jordan’s body to attack his brain we are just playing a waiting game to see what he does next. I don’t like that answer but I can live with it. We did a full assessment on Jordan and he had gained 8kgs since the gtube surgery…..AMAZING!! The neuro team joked that Mom had also gained 8kgs since this all started. Needless to say I gave them the stink eye and told them listen, Mom needs popcorn and chocolate because I haven’t slept in 7 months so back off, and we all laughed. It’s true, mom has gained about 8kgs also ha-ha whatever, I’m still 25yrs old and I will lose it quickly (shhh don’t tell anyone that is a lie)

March 27^th Jordan was set to go to school for his first day in 7 months, how did we get here? I am amazed by this little man every day. His body is changing, the weight gain, puberty has started due to the weight gain, let’s not even talk about those changes (BOYS are gross), he is happy and starting to thrive, the good days outweigh the bad days 7/1. He is the toughest, strongest most amazing miracle I know. He attended school and was so happy to be back, he was exhausted after but we have a plan, a new routine. Jordan is all about changing the groove of our family to meet his needs, screw what anyone else needs. So he will now be attending school on Tuesdays and Thursdays. He was so happy to see the school bus pull up and he was getting a ride. I cried, a lot. Letting him out of my sight, where I can’t jump if something happens is difficult but I keep telling myself between his nurse and his EA’s he has great care at school and they will call me and 911 if anything happens. So deep breaths Mom, what will be, will be.

This is our new groove, school part time, still many follow ups with neuro, keep a close eye on things, increased seizure meds, gtube, weight gain, puberty, fighting with feeding pumps, trying to find diapers that fit him (which has been an expensive but funny experiment), taking the bad days with the good days, trying to keep a smile on our faces and not worry about what tomorrow will bring. Jordan is happy and we will follow suit.

“THERE IS GOING TO BE VERY PAINFUL MOMENTS IN YOUR LIFE THAT WILL CHANGE YOUR ENTIRE WORLD IN A MATTER OF SECONDS. THESE MOMENTS WILL CHANGE YOU. LET THEM MAKE YOU STROGER, SMARTER, AND KINDER. BUT DON’T YOU GO AND BECOME SOMEONE YOU ARE NOT, CRY, SCREAM IF YOU HAVE TO, THEN STRAIGHTEN OUT THAT CROWN AND KEEP MOVING FORWARD LIKE THAT BEAUTIFUL QUEEN YOU ARE”

HOLY HELL......part #2

Part #2

Nov 21^st Jordan was admitted for preop, his g-tube surgery went very well, Neuro surg was in the operating room at the same time because they were considering an operation to replace both ends of his shunt as well. Once in surgery the neuro team decided the shunt was in great condition and they didn’t want to touch it. Phew one obstacle hurdled. We were relieved surgery went so well, hopefully this would be a short hospital stay 3-4 days. Jordan healed well from surgery and general surg was impressed with how fast he popped back considering everything he had been through. The neuro team did a full assessment and they were happy with how he was progressing but they wanted to redo the MRI just to make sure something alarming wasn’t happening. The plan was MRI on Nov 24^th and home that evening. We packed up and were ready to go home. Jordan went down for his sedated MRI and when we came back up to the floor the Neuro team was waiting in his room for us, they had the results immediately. I was shocked to see them; they said “Sit down Mom you aren’t going home”. They then told me the right side of his brain was showing signs of swelling and they believed what happened to the left hemisphere back in September was now happening on the other side. They said they had no idea what was happening or what was causing this, we went through an investigation plan, another LP (Lumbar puncture/spinal tap), CT Scan, Shunt Series in Nuclear Medicine, Blood work, Metabolic testing etc. I took a deep breath and asked them if this meant he could wake up one day and be paralyzed on the other side of his body or suffer another extreme seizure and they said yes. Another deep breath Mama. They said his brain had already been through so many traumas they didn’t know how it would handle more traumas so soon. They immediately put him on a 48hr EEG to watch brain function; 2 days later they came in and told me he was having seizure activity on the right side of his brain which had always been the healthy side of his brain. Again breathe Mama.

After initial tests came back the Neuro team started to consult with other neuro teams, they had no idea what was going on in his poor little brain or how to stop it from getting worse. They wanted to try a high dose IV steroid but that was a last resort. His body was basically attacking his brain as if it was a foreign entity. How does that happen? How does your body decide your brain doesn’t belong? I was so confused and so were they. It seemed every day they told me they had no clue what was going on and they were just going to do more tests. The positive was Jordan was awake and very happy. He was giving the nurses much entertainment and many laughs. They started calling him the old man of the floor seeing as he was on the peads floor and just 2 months away from technically being and adult.

We had now been in the hospital 2 weeks and the Neuro team decided to try a round of IVIG meds to see if it would halt the brain cells from dyeing. The left side of the brain that was attacked in Sept was now shrinking because of the dead brain cells and the right side was swelling. IVIG meds started and we wait…..Another MRI and no changes. Last resort was fast approaching and we had a team meeting and decided the high dose steroids was the best option. I asked if this was a life saving measure or just a trial and error and was told both answers were possible at this time. They didn’t think Jordan would survive anymore trauma so we had to try everything to stop this from progressing. Everyone was so confused because clinically Jordan was well, he was happy and alert. According to his MRI he should have not been. So we started the steroids, after a few days they repeated the MRI and it seemed the steroids were working, neither side of his brain was progressing. It seemed Jordan was coming home for Christmas, so 6 days before Christmas we packed up and came home with more steroids, a gtube for feeding, a slew of new meds for seizures and a hope and a prayer. They assumed we would be back between Christmas and New Year’s but at least he would be home for the holidays.

I honestly don’t know how I would ever get through all of this without so much love from everyone. THANK YOU doesn’t seem to be enough, friends who bring food to the hospital, coffee, the huge quantity of coffee I consume, cards, texts, visits, hugs, Kleenex for the tears and jokes to make me laugh when I don’t know if I will ever smile again. Family, my parents, aunts and uncles, cousins, grandparents, I can’t tell you how much I love you all. Late night and early morning calls because I don’t know if I am coming or going. To Jay and my other kids….phew, you guys give me strength, love and so much support. In an instant you drop everything to come to the rescue and help Zander maintain some sort of normal life while I am dealing with everything for Jordan. I don’t know how we all survive this and face each new crisis with dignity but I know without each of you I couldn’t do what I do for Jordan.

 Everyone calls me superwoman/wonderwoman but without my team of avengers I could not fight these battles.

Anyone who knows Jordan knows he hates Christmas so he wasn’t too concerned with it but I was happy to have him home. I was exhausted, emotionally and physically. However we pulled it off, planned Christmas, did all of our shopping, prepared a meal to feed an army and celebrated Christmas with family and friends.

Jordan progressed well at home and started showing signs of healing, was this the Christmas miracle everyone wished for? Was this him saying…nope not this time, I am not done fighting? It was both. He had good days and bad days, he slept 22 hours a day but was gaining weight and when he was awake he was very happy, his personality started coming back and he laughed all the time. I was still so worried because we could wake up tomorrow and everything could change. His 18^th birthday came and went and he still had good days and bad days. We had follow up after follow up with the neuro team and they had no answers just more scratching of their heads and high 5’s.

We were given the go ahead to send him back to school part time when he could stay awake long enough to last a day at school so we started getting things prepared for that. 

HOLY HELL......literally Part #1

Sept 2017-Jan 2018 Part #1

Well again I have not written in a while. The last 7 months I have had a lot to say but didn’t know how to express it. I guess I was waiting for clues from Jordan and he isn’t giving me a lot to work with right now. So I will start in September 2017.

I woke up on a Monday morning to get Jordan ready for school like any other day. When I tried to wake him he wouldn’t wake, not completely strange for a teenage boy to not want to wake up on a Monday at 6:30am for school. So I let him chill while I went and made his lunch and breakfast and tried to wake him again. He again was resisting, I thought ok maybe he has had a seizure through the night and he is really wiped out. So figured I would change him and get some clean jammies on him and bring him downstairs to relax. While changing him I noticed his right leg wasn’t moving and when I moved it, it flopped over. He had no tone in his leg, at first I thought maybe he had hurt himself and dislocated his hip. I started to change his shirt and I noticed his right arm was doing the same thing as his leg. I know he wouldn’t have dislocated a hip and shoulder at the same time that would be some freak incident. I started to get worried that he was experiencing paralysis but tried to stay calm. I finished changing him and carried him to the living room and called his neuro team. After talking to them we decided a trip to emerg was necessary.

Jordan arrived in emerg and went into another seizure right away. We got meds on board and they called the neuro team to come right away. Then started all of the tests and assessments.  Jordan was indeed paralyzed on his entire right side, his left pupil was fixed and dilated and he was very nonresponsive. I was scared but remained calm. Neuro came back after the initial CT scan and MRI and said they didn’t see signs of a stroke but wanted to do further testing. We were admitted to the peads ward and followed by Neuro for 23 days. Over those 23 days they told us he didn’t have a stroke, he did have a stroke, he had paralysis, he didn’t have paralysis, they say something on his MRI’s and they didn’t, his CSF (brain fluid) had increased cells showing signs of infection but no infection or bacteria grew in the lab cultures. It was the most bizarre 23 days. He didn’t wake up for the first 9 days of those 23 days and when he did finally wake up he had no function, no emotion, and no personality. For lack of better words the lights came on but nobody was home. I had possibly my first ever complete breakdown when it comes to Jordan. When his head neuro came in after day 10 and told me he had suffered a severe seizure in his sleep the night before we came into the hospital, I broke down and sobbed. His poor team has never seen me cry like that and I think they were worried because they stood there staring at me like I had 3 eyes. They told me they still weren’t sure what was causing all of this to happen but they thought he was suffering from HHE Syndrome.  Hemi convulsion Hemiplegia Epilepsy Syndrome. They didn’t know what long term prognosis was or how he would recover as it is not common.

Over the next few weeks Jordan started to wake up a bit more and perk up, he still had no movement on his right side and he had lost the ability to swallow therefor he was being fed through an IV and an NG tube through his nose. I am so thankful for everyone’s support when I cried, vented and needed company, food, coffee or just mindless chatter. It was the longest 23 days of my life waiting for Jordan to give me some sign of something. Finally he was discharged to come home with physio and a surgery date for a permanent feeding tube. His surgery was scheduled for the end of October so it wouldn’t be a long wait as he was discharged Thanksgiving weekend (Canadian Thanksgiving) I was nervous bringing him home because the doctors really didn’t know if this would get worse, happen again etc. but I knew home was better than in hospital.

Thanksgiving week is the crazy week for my business. I do 1200+ tarts and 200+ pies in less than a week. I had already taken preorders before this all happened so I had no choice but the show must go on. Thank goodness the nurses love defect pies as payment to take great care of my son. I would spend 8-10 hours at the hospital every night, a few hours with Zander and then all day baking and the nurses would page me if the medical team needed me. It was a crazy week but we survived.

2 weeks later we went to the hospital for surgery, when we got there we found out Jordan’s surgery had been cancelled for an emergency case and lack of beds so we came home. His surgeon called the next day and said they had a new surgery date for mid-November. Back home we went, physio daily, fighting with the NG feeding tube that Jordan hated so he pulled it out many times. I can honestly say shoving a tube down my sons nose and throat repeatedly so he doesn’t starve is not the easiest thing I have done. Sometimes I was frustrated, sometimes he was. Sometimes I had to walk away for a few minutes and try again. But hey at least we were home and Zander got to spend evenings with his Mama. I beat myself up sometimes when I feel stretched thin between the hospital and other kids. It sucks not knowing where I should be at what times. I guess we just all do our best.