A diagnosis.

Today is world stroke day... I have been amazed at the damage that a stroke can cause, I learn more on a daily basis, not through books but by studying my son. It's been six and a half years since Josh had his stroke (at 3 months); it feels like 20.

Last week we had an EEG (sleep deprived - which in my old age takes a while to recover from... even though the sleep deprivation was for him). The results were "there's a LOT of activity going on in there".  Apparently he's having a lot of seizures in the site where the stroke happened, they figure there is a few different types of seizures and are occurring frequently. (There is much for me to learn in regards to this new information so pardon my lack of knowledge right now).

Why is Josh not sleeping? Seizures... not fear, not worry... seizures. Why is he not catching up developmentally? Seizures... The diagnosis is 'Epilepsy' which is a term given for someone who has had two or more seizures without known cause (ie. a fever or fall or illness). This was new to me, I had always thought that epilepsy was a disease that you were born with. Anyway, the reality for us as a family hasn't really changed that much; he's been having these seizures for who knows how long, but the label is a little scary.

HOWEVER... and this is big. We got answers! I have been thinking that I am crazy, worrying that I am for some reason seeing things in him that are totally not there, but the truth is now that we have a diagnosis I can rest a little easier knowing that we are on course to get him the help he needs. That help started in the form of new meds, and guess what? He started the meds 6 days ago... and we are on day 5 of sleeping ALL NIGHT LONG!! You have no idea how this little bit of change has and will impact our family. I feel like a cloud has lifted and though it's not fully light yet, the sun is shining through.

The meds should help in many ways, ways that excite me and have me hoping once again for dramatic changes and miracles in his life. One of the biggest changes is that we now have a neurologist following him, one who specializes in both strokes and seizures. This is great news given we have not yet had one specific doctor following up with him before.

Thank you all for your prayers last week, and for your patience in waiting for an update.

Please, take the time to learn about the symptoms of stroke, the help options for those of you who know someone affected by a stroke; you can use the link to the pediatric stroke page on this blog or just Google it. It takes a few minutes but it can save a life.

Super Josh visits Cardiac Clinic

Josh hands over his health card and gets himself registered... hes growing up.

on Wednesday we had our cardiology appointment, this update is past due and I apologize for that for those of you who have been asking.

The main reason (for those of you not caught up) for this last visit was that Josh has had several episodes where he suddenly goes very pale to the point of blue, gets very sleepy, and VERY cold. One episode had his core body temp on the borderline for hypothermia. We have also been noticing other 'odd' things that require further investigation. Then on Saturday during his brother's birthday party he had another severe episode, this time his colour was non-existent, not even blue, just no colour. He was cold and this time he was losing consciousness. After being rushed to hospital we were told that they believe it could be his heart again. I contacted his Cardiologist and hence the appointment on Wednesday...

OK. All caught up (see previous posts for more detailed description of events).

So, back to the appointment. We did all the required tests and then sat down to talk to our doctor. She really doesn't believe that it's his heart, (good news), she believes that this is neurological (seizures). She did however order a holter monitor for 24 hours to see if it's a heart rhythm issue, and we have a different monitor that we use during one of these 'events' but in her words 'this is to rule out the heart as the underlying issue.

While we were there we also got a call from the Neurologist who has bumped up his sleep deprived EEG to this coming Wednesday... and now we are praying for answers from that, because quite frankly, we need to know what is happening to him.


To make the day more fun for Josh he asked if he could wear his 'heart hero' cape when he went to the hospital so I agreed, and then he had me taking pictures of the different things he does during his clinic appointments. I only had my phone handy and he was moving a lot so the pictures aren't brilliant but they are fun... Enjoy them and please, remember him in your prayers this week.

The 'sticker test' (ECG)

Needs to know if he's getting heavier

...and definitely needs to know if he's grown at all

checking his SATS

now he's having his 'muscles measured' (BP)

nailed that part!

walking to the doctors office

waiting for the doctor

There she is...

He loves her...

nailed that part!

getting his holter

wearing the holter

post clinic tradition of a doughnut for him and a coffee for Mum :)
This is our favourite part of clinic days!

My brain may just implode

 For a long time I went about doing things in a disordered and chaotic way, I am not an organized soul... in fact once upon a time I took great pride in my disordered existence. Planning?? What's that?? I remember when Tim and I started dating and he took me out for dinner and he pulled out his planner and started planning weeks in advance what nights we would have dates so that he could schedule his meetings around it... I teased him for years about that night (still do actually). I made it my goal to teach him spontaneity; which lead to a few calls where he was calling to tell me that he was planning a spontaneous date night (four nights away). ;) For the first few holidays we took together as a married couple we actually had to plan time to 'be spontaneous' or our days were planned so perfectly that I wouldn't have time to just wander...

Yes, I tease Tim regularly about it. The truth is though, over the course of the last number of years I have come to envy his organized ways, I have come to appreciate that when we go away we know where we are going, and that we have a hotel when we get there. (My old plan was to arrive in a city and find the closest hostel to crash - which admittedly led to a few nights on a bench in a train station or two).

This month I particularly jealous of him, and I am quickly learning that I need to swallow my pride and admit I have a problem. Today for example... I am a photographer... yet I forgot that it was picture day for Kaleb and sent him to school looking.. well, less than stellar for a picture that will haunt him for years. I had to run home and grab a nice shirt so that his picture wouldn't scream 'my mama forgot it was picture day'. Last week I was annoyed with Josh's teacher for not telling me in advance that he need to bring a potato to school... (he came home and told me he needed a tomato so I went about getting one - not an easy feat that night)... but when he came home from school the next day he brought the tomato and a note from the teacher saying 'potato, not tomato'... turns out it was on the class calendar that is hanging in plain sight on my fridge!

I have two kids library books returning on different days (often I get the days, or sometimes the books mixed up ), I have photo shoot dates ringing about my brain, and meetings with doctors and organizations regarding CHD awareness... and now I have a a bunch of appointments for the doctors banging around up there too... I think, truly, that my brain is going to either fizz out and fry itself or explode (or possibly implode... can it do that?) if I don't sort myself out... hard to admit given my absolute pride in being a 'non-planner'.

I think of that movie (Multiplicity) where Micheal Keaton was cloning himself to get all the things he needed to do done... what I wouldn't give for a few extra 'Laurie's' hanging around.

Enough moaning... here's the latest plan/update on Joshua's recent medical status: We have a clinic visit tomorrow which will include an ECG. He will need to wear a 24 holter (it monitors the heart rhythms for a 24 hour period) and he will be sent home with a 'telephone transmitter' which quite honestly I have no idea what it is but I gather we use it during one of his 'episodes' to monitor what is happening during the event and then the information is sent to the hospital.

I also spoke with the neurology nurse practitioner who believes these 'events' could be seizures... (good thing we have that EEG booked). All in all... I haven't got a clue what's going on but I plan to find out.

Basically... it's just more stuff that will clutter an already cluttered brain. :)

Please, before you email with suggestions... I have a calendar on the fridge and on my phone... the issue is remembering to put the dates in... ;)

what am I thankful for?

It is thanksgiving weekend... it's been running through my head all evening... I don't need to sit and ponder what I am thankful for. Today it hit me like a freight train... I am thankful for my kids, my husband and for the friends who step in to help when life goes totally wonky.

My week started when on the way to pick up Kaleb from school I walked into  a crazy situation in which a man was shot multiple times and the shooters were running through the streets. Cop cars and ambulances raced past me to get to the scene... I was in a fog I guess, thought it was a scene from a movie until the principal from Kaleb's school came out and made me come inside to safety. At that point I was locked in the school office while the school when into lockdown. Kaleb on the floor below me, it was terrifying.  When we were finally given the go ahead to leave and I had Kaleb safely in my arms I was asked by a cop where I was headed, when I told him how far away it was he said 'carry him home, and walk quickly'. I can promise you it was only the adrenaline that gave me the strength to carry a five year old the 20 minute walk home, and I did it in about half the time.

My week ended (today) with what should have been a fun day with friends celebrating Kaleb's birthday party...

Just 45 minutes into the party Josh fell and hit his head on the concrete outside. He cried but he seemed okay at first, but within minutes he was asking to sleep, his skin lost all color, his lips so blue they were almost translucent. His skin was cold and clammy, and his eyes were rolling back in his head. He was losing consiousnes and it took all four adults to keep him upright and awake. We called 911 and before I could finish the call we had four police cruisers at the door, a fire truck and the EMS. We were rushed to Sick Kids where Josh was seen by doctors. I have only been that scared one other time and that was when we thought we were losing Josh when he was 6 months old.

Josh has had episodes like this before, not the fall, but the cold and clammy, the blue skin, the tired and lethargic state... but never like this. When I gave his full history to the doctors they did a few neurological tests and seemed satisfied that it was not a head injury that was the root of his problem.They believe it could be his heart.

About an hour or so after the event occurred Josh regained color, he became more alert, and then he slowly came back to himself, putting together a Lego toy and smiling and joking about his stinky feet. One would think nothing had happened to him.

Thankfully, we were released from hospital and Josh is sleeping peacefully in his bed (we just checked on him)...

Thanks to our friends who drove behind the ambulance to meet me there, Tim was able to continue Kaleb's party for him ... he got to have his cake and open his presents. When Josh and I returned home you could look around the house and assume nothing had happened. So, do I need to think about what I am thankful for this year? No. Not even a bit. I am thankful for our friends who changed all their plans to help us out when we needed them, I am thankful to Tim for stepping in and making sure Kaleb's birthday was still his special day, I am thankful for the first responders who came so quickly, I am thankful that this week is almost over... and I am thankful to God that Josh is upstairs in bed, where he belongs, safe (for the moment).

Please, pray for him and as as we navigate this new issue and try to figure out what is happening to our son.

I know that many of you were made aware of the situation today... the texts and emails were pouring in and I wanted to take a moment to thank you, your prayers are always valued.  Jill and Chris... you stepped up when you didn't have to, I have already told you this, but I needed to say it again, thank you.

waste of time

We had the appointment with the psychologist yesterday... to put it mildly it was a total waste of time and more frustrating than trying to clean the floors with a construction crew still doing dry wall...

My goal in these appointments is not to get Josh to stop waking me up in the night; for me, that would be a nice side benefit, but my goal is to help Josh learn to cope with his anxiety and worry. If he learns now that I don't want him to come to me when he's scared or has a problem then later, when he is struggling with something what is the foundation I have built for him to come to me??

I also don't want him lying in bed worrying and being scared, and feeling totally alone while does it. We are family, we face things together; even if it means waking up in the night (as much as I hate it). So, what to do now?

My plan for the moment is to buy books - a few recommendations I've been given - and use some of those coping tips to help him myself. I could use your prayers because this is going to a journey unto itself.

The one thing I did learn, was that it is totally normal for cardiac kids to be anxious and worried about death and surgeries and their hearts. So at least Josh isn't the only child out there struggling. I am hoping to find other moms going through the same issues so that I can talk to them about their coping strategies.

We also got our sleep deprived EEG appointment... and let me tell you, when they say 'sleep deprived' they really mean it... not just the patient but the family too. Turns out that Josh and I are doing this together too... We have to put him to bed at 10 (3 hours past his normal bedtime)... then, (and this is what will hurt)... I have to wake him up at 2am and keep him awake until his appointment at 8am... I can already see the coffee cups piling up just thinking about it. I am hoping and praying that we get some answers from that appointment that we didn't get from yesterdays appointment...

I think I have a million things to do this month (quite literally) and now I am taking on learning cardiac psychology as well. I am still not better after 2 weeks of illness and (if I could have a little pitty party for a second) I am so bloody tired!

....

pity party is now over... now it's time for a brand new five year old to celebrate at his birthday party!

Five incredible love filled years

5 years ago I was the OR having my youngest son. It was a Friday, the Friday before thanksgiving. I had gone in for a blood pressure check and an ultra sound (I had pre-eclampsia)... my condition had gotten worse and so they decided that they would do a C-section that night. He was 4 weeks early. I remember being too sick to really be too worried about much, but we did know that a possible abnormality was showing in his fetal ECHO and of course there are always risks that come with pre-eclampsia. I lay on the table and honestly do not remember much, it's all a foggy haze. I was violently ill and shaking uncontrollably... but when they put Kaleb on my chest the shaking stopped and my heart melted. From the moment I met him him face to face I knew a love like none other, it was a different love from even the love I have for Josh. He sucked my nose and stared intently at me. He was so beautiful. I don't remember the pediatrician taking him to check him over but I do remember him looking at me once he had checked him over, his stethascope in his ears, and his words, I will never forget his words. "you have a healthy little boy, I hear no murmer"... never have there been such sweeter words... other than the ones whispered years later 'I love you mama'.

Watching Kaper grow, hearing the way his brain works, listening to his stories, laughing at his antics and enjoying the way he discovers new things is such an incredible gift. His heart is huge, his compassion and generosity are humbling, his capacity for love without limits is something that warms me from the inside out. This little boy, he steals my heart on a daily basis, when I think I can't possibly love him more than I do already I am always hit by some new wave of love and it leaves me awed.

Happy Birthday little man. I love you beyond imagination. You have completed our family and your light brings laughter and joy into our home daily. Thank you for being the incredibly loving kid that you are. We are so proud of the person you are growing into!

All my love, forever.
Mama xoxoxox

Time out

Sometimes life requires a breather... a day to just be; to enjoy each other and to get outside and be thankful for the little things...

Every year since the boys were tiny we made the trek to the apple farm to pick apples and take a tractor ride. This year is filling up quickly, our busy schedules this fall is overwhelming and our weekends are filling up so yesterday when Tim suggested we do our apple picking, despite feeling sick I grabbed the opportunity to get outside... I can't say I felt great, in fact today is Sunday and I am bailing on church in favour of my pj's and couch... but watching the boys jumping off hay-bales, picking fresh apples (and eating them at the same time) was worth it. The weeks to come will be busy with work, appointments and yes, not to worry, some fun too... having a chance to connect as a family was a reminder to me that no matter how I feel, no matter what 'things' fill our schedule; these guys come first.

Setting aside time to snuggle with them, to give them traditions that they can remember when they get older, and watch them laugh and play is one of those important joys of parenting that sometimes get overlooked; particularly when we aren't feeling our greatest.  It was Tim who suggested this, and I am so glad he did. So glad that he cares so much about our family time, and that he protects it the way he does.

Daily news

I wrote yesterday about the stroke team meeting to discuss Josh's case yesterday... I've been sick with this nasty cold and we had Beavers last night so it took all my energy just to accomplish the little things like dinner and Beavers and getting them into bed; I all but forgot that they were to call me yesterday to fill me in on what was decided (if anything). However, at 8:00 last night I got the call. They have discussed it as a team and have decided that we need to do a sleep deprived EEG... (basically we wake him up at an ungodly hour and take him to the neurology ward for an EEG, the premise being that we will see things on the EEG that we wouldn't see if he was more awake and hopefully where he may fall asleep and we can also see what's going on in his sleep.)

While I hope and pray that nothing is happening I can't help but hope that they can see something, anything, that would help explain some of what's going on with him... does that make me horrible? I want answers and the brain is so mysterious to me, so foreign... If something is happening in his brain that is preventing him from developing normally or healing from his stroke then I want to know so that we can figure it out, get him on medication or... well, I don't honestly know what they can do. I guess I worry that we will leave still not knowing anything, but I also worry that we will discover something we didn't want to know.. makes zero sense I realize.

Last night I was thinking about it all, taken back in time to a moment in the Sick Kids chapel when I was literally facing losing Josh, sitting there, just at the beginning of this journey I thought it would be a quick fix, I thought 'if he survives this, then he'll be okay'. I thought the same thing after the first few surgeries. It was after the second surgery that it began to dawn on me that this was a life long journey, and that our lives would always include Cardiac appointments. It's sobering. It's also taught me a lot about love, the love a parent has for a child, the commit that it means, the responsibility. I thought having a baby would be all snuggles and sweet smelling baby powder, cute clothes and giggles. I knew we would be sleepless for a bit, but I had no idea the real journey that parenting is about. I don't want to go back to Sick Kids ever again, that is the honest truth. I want to have two healthy kids whose biggest medical need is a broken limb from a stupid stunt; but I don't, and that is what has taught me the most in this lesson of the heart.

No matter what, no matter when. They need me and I will gather up every ounce of strength I have to be there, through all the yucky stuff, through the not so sweet smelling things, through the less than cute moments, through the terror filled nights. Loving these two boys has shown me how much God loves me, how much my parents love me. I was too selfish before kids to really understand that love, to fully get what it means to love without conditions, to be willing to die for the chance at making life better for someone.

Sometimes when it's dark and the house is quiet I just lie there and thank God that I am no longer the same person I was before these three came into my life, I don't even recognize that girl anymore and for that I am grateful. Sometimes its the pain in life that teaches you the most, that stretches you the most... I just wish it didn't have to be Josh's pain that brought me to this new place of understanding...

On a totally different note... Josh was selected to be this months patient profile for the Sick Kids Foundation... (follow the link below). If you happen to feel like clicking the donate button please consider designating the donations to the heart centre so it goes straight to them. (Please, this is not a pitch, there is no obligation, I am just super proud of him and only share this link so that you can see his story on their website).



http://www.sickkidsfoundation.com/why-give/sickkids-stories/kids-stories/2014/10/joshua

Life is fluid

For anyone who has been following this blog you will know that for years we have had struggles with Josh's anxiety and fears. Most of the anxiety manifests itself in the form of nightmares that wake us multiple times a night. We have tried all the tricks we know, and I do mean ALL the tricks we know. Some have been successful for a month or two but the fears still lurk and the cycle eventually begins again. With every transition, change or doctors appointment the cycle begins again. This summer was a welcome respite from any therapy, appointments or change. other than a few nights we have had a fairly peaceful summer and the nightmares have for the most part ceased... until September 3rd when Josh heard that his valve is leaking. The cycle has begun again and after years of sleepless nights and calls to the psychologist at Sick Kids I have gotten to the very end of my rope.

Yesterday I called once again to try and get an appointment with the cardiac psychologist and to my amazement we were given an appointment right away! Next Friday to be exact! I am so thrilled that finally we can begin to delve into Joshua's mind and discover the fears and anxiety that lurks there, and hopefully give him some useful tools to help him cope with it in a way that allows him rest, and peace.

We have also got new worries in regards to Joshua's brain, we can't say for sure what is going on but there are enough little things happening with him that I am concerned and want them to look more in depthly at him. I was again shocked yesterday when I called and was told that they would discuss his case as a team and phone me today to let me know the plan of attack. My hope is that if there is something going on, seizures? Strokes? that they can find it quickly and get him help. The brain is so tricky, it's hard to know what is happening... please keep these things in your prayers as we move ahead in these areas.


With all that being said, life moves at a quick pace these days and to my amazement it's now October! In just 9 short days I celebrate my sweet little Kaper and the day that I can became the mother to a child so like me that I both stand in awe and cringe at the same time.September has flown by, last night Josh was telling me that it happened 'too fast' and I couldn't agree more. The boys are loving school (both of them!) and they are now full fledged Beavers! I have a lot of great new opportunities as a CHD advocate which thrill and excite me and Horizons is kicking of the year with some really awesome new clients! Life is always fluid, always moving, and for that I am thankful.

This post is more of an update post for my regular readers... thank you for your faithfulness and prayers. More to come!

L