December 18th, 2016…

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I think 2016 saw only 1 post made here on this little family blog of ours. Facebook and Instagram, have been my primary source of updating this year since it’s just a really quick and easy thing to do. However, this morning I saw a really lovely comment here from a lady named Ann, who I’ve never met. She said that her 8 month old son had just recently received a similar diagnosis and she’d spent the last 2 hours reading our journey with Foster. I can  totally remember being in her shoes. Diligently searching google for hours, looking for other families in similar situations. As the blogger, sometimes I think it’s only important to update when something big is happening. Like I should post an update if he’s in the ICU because all of our family and friends want to know what’s going on. But if I think back to when I was searching, as a new medical mamma, I think I really just wanted to see normalcy. I wanted to see that it was possible to have happy moments and a happy life, in the midst of all the chaos that can be raising a very medically complex child. I just wanted to know that we wouldn’t be living in the hospital forever, that we’d find our groove and be well supported at home. And I think that’s a place where we’re at now. So maybe it’s important for me to share the normal boring day to day events too; since I’m so incredibly blessed to have them.

So for all the Anns of the world, I want to say that raising Foster the last 3 years, has been one of the absolute best blessings of my life. He teaches us profound lessons on a daily basis. He radiates love and happiness more then anyone I’ve ever met; despite the hardships he faces in his life. He is the definition of pure innocence. He literally can do no wrong. I shared recently on Instagram a little snippet about Foster, regarding his baby brother Fletcher, learning to crawl. But I’ll share it again here because I just think this little story, is absolutely the best description of Foster and how he faces life.

“One of the many joys of special needs parenting, mixed emotions. Sometimes I don’t know whether to laugh or cry. Like tonight, while Clay, Foster and I sat on the edge of Foster’s bed, with Foster sitting up on my lap, leaning against my body to support his head. I had his little left hand in my left hand and his little right hand in my right hand, as I helped him clap and cheer on his baby brother, as Fletcher took his first good attempt at crawling. I root on Fletcher, all while silently reminded of the milestones never met. Feeling a little sad for Foster, I look down at him sitting on my lap, as we clap and he’s smiling. This little boy is such a perfect human in so many ways, he never compares himself or feels sorry for himself and his lack of mobility and movement, doesn’t stop him from feeling the joy of being included in cheering on his little brother. I am constantly reminded of how much I have to learn from a little boy with no words to speak.”

With that said, our life is certainly not without chaos. At best, we still spend about three days a week at the children’s hospital, for regularly scheduled appointments and treatments. Foster is followed by the Neurology clinic, Endocrinology clinic, Nephrology and Urology clinics, Pulmonary clinic, Cardiology clinic, G.I. clinic, he see’s a Pediatrician, a Physiatrist and physio, occupational and speech and language therapists. He has routine, regularly scheduled tests such as EEG’s, ECG’s, 24 hour holter monitoring, oximetry tests, blood and urine lab work and spends full days each month in medical day treatment receiving IVIG and Pamidronate infusions. This is our best case scenario. Then you can tack on the monthly (maybe every other month) episodes of status epilepticus resulting in hospital admissions to stop the uncontrollable seizing (that was this week for us).

I remember when Foster was first diagnosed, watching documentaries on TV. Foster was diagnosed at about the same time that medical cannabis started getting a lot of media attention in pediatric epilepsy. So there were a lot of TV segments available about kiddos with seizure disorders. Anyway, I’d see these documentaries on kids having hundreds of seizures a day and I can remember just literally being in shock. Like I just didn’t know that was possible. I didn’t know these conditions existed and I remember just feeling blown away by these stories. And the interesting thing now, is that by the time Foster started experiencing periods with hundreds of seizures in a day, I had become so desensitized to seizures, that I sometimes don’t even feel like our journey is worth sharing. Then something will bring me back to the beginning, before I became so desensitized to it all and I can vividly remember how profound those initial stories felt to me.

I’ve also found that I kinda hate being associated with the diagnosis of epilepsy. I mean technically Foster has a very rare condition, caused by a genetic mutation to his SCN8A gene but the larger umbrella diagnosis is Epilepsy. And the reason I cringe at that diagnosis is because, I feel like the word epilepsy in no way answers anyone’s questions about Foster. If a stranger in a store sees Foster in his wheelchair, with his feeding pump and his oxygen and asks about his condition and I say “oh he has epilepsy” they’re just left thinking, so why can’t he move? or talk? or eat? Probably the main reason though, why I hate the diagnosis of epilepsy, is because I feel like it totally discredits everything he’s had to endure in his life and our life. Realistically, most people think Epilepsy is 100% controllable. If you meet someone and they learn that your child has cancer, that person automatically understands the threat that disease poses to your child’s life and they can assume the emotional tole that diagnosis takes on the parents. If you meet someone and they learn that your child has epilepsy, it does not have that same impact. And yet, there are terminal and life threatening variations of epilepsy, some even claiming that as many as 50% of the kids diagnosed with these forms, will pass before the age of 2! But nobody knows about it. Anyway the point of the story is, I’ve just decided that if the reason I hate the association with epilepsy so much, is because of the lack of knowledge out there, then that just means I need to do more to make it known. I have to remember the profound impact that Foster’s daily life has to someone hearing for the first time ever, that there are children suffering through hundreds of seizures in a day.

Most importantly I want to take the opportunity to show people the light the lives inside of Foster, the twinkle in his eye, the joy that radiates from him on his good days. Because I know most people don’t have the amazing opportunity that we have to experience a deep and intimate relationship with  someone like Foster. And then lastly, I hope that our life can shed some hope to those new families out there just getting their diagnosis; that you can experience happy moments and grief at the same time. There is a cloud of anticipatory grief that comes with a life threatening diagnosis but we try our hardest not to live there. Clayton and Fletcher don’t know it but they have huge roles in offering Foster the fullest life experience. I really want to post more frequently (then once a year haha) so that the new families in our shoes, can see that it’s possible to lead a really normal and happy life despite all of this. Because that’s really what I needed to see back then. I wanted to see what the future might hold for Foster and I wanted to see that it was going to be okay even if it wasn’t as I’d envisioned it to be. Clayton and Fletcher are going to get some more attention on here as well since their such huge contributors in achieving our normalcy as a family and balancing out the sad moments with happy ones too.

So now for the family members following on here that don’t use Facebook. Here’s a little recap of 2016 in photo’s; since I haven’t posted anything really this year 🙂

June 17th 2016…

It’s been about 8 months since I last updated this and a lot has changed around here since then. Mainly, there’s this guy…

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He’s Fletcher 🙂 he still doesn’t have a middle name…we kinda forgot to finish naming him after leaving the hospital.

He’s 8 weeks old and giving us lots of wonderful smiles.

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I haven’t taken as many pictures of the three boys together as I’d like but we have a few good ones. I always want to take photos of the boys when Foster’s having a good day and smiling a lot. Unfortunately, there hasn’t been as many of those days lately. His illness has always affected him in ebbs and flows but since the fall when Foster had his ICU stay we’ve seen an increase in the frequency of rough patches. 2016 so far has had quite a few rough patches which take him a week or two to recover from before we see our smiling happy Foster again. And then it seems like he’s happy for a few days before the next rough patch hits him. He’s overall been stable but has been back on 24 hour oxygen more often then not and is struggling with increased seizures and a few other irritants for him. His G.I. system has been slowing down since the fall and we’re at a point now where he regularly does not meet his calorie goals because he can’t tolerate his meals even on a continuous feed. Which is us setting the feeding pump to take his total daily blended diet volume and run it over 24 hours, so the pump administers roughly 50ml over an hour, 0.8ml/minute. Even at that very small amount he’ll still vomit out a significant amount to the point that we have to turn off his pump all together for periods of time, dilute his formula or even run just water and test his blood glucose to ensure his blood sugar doesn’t drop too much. He previously had a surgical procedure called a fundoplication done to prevent this frequent vomiting. the procedure was done because Foster is unable to protect his airway so when fluid enters his mouth, he allows it into his lungs. That seemed to help for a while but now he’s actually gagging enough that he can push it through the fundoplication and up into his mouth. So we’re always rushing to remove his feeding tube and vent his tummy when he gags before anything gets up into his mouth. Which is a bit of a pain if we’re driving or unable to access his mic-key site easily and quickly. On a good note, the bone infusions he’s been receiving seem to be helping since he hasn’t experienced a fracture since January!

My favourite picture of Foster so far this year…

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Having a healthy baby is surreal. Honestly I can’t even explain the freedom of something as simple as picking up the baby and walking out the door without cords and tubes limiting your distance. At the same time, I haven’t quite fully accepted that Fletcher is healthy yet. I know that he is, but I still examine him looking for/waiting for a seizure.

Clayton is so thrilled with our new addition. He literally hugs and kisses both of his brothers all day long. He’s also the only one that doesn’t seem to confuse their names 🙂 Something that didn’t cross my mind when we named Fletcher….but I constantly call Fletcher Foster and Foster Fletcher… oh well, people generally know who I’m actually talking about I think.

 

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Our home has also changed since my last update. We moved at the start of December into our new home which has lately kept Brett very busy with projects. He’s just recently finished our fence and is currently out front digging a hole to plant our front tree. Tomorrow and Sunday we’re laying our sod and then hopefully a break for a bit would be good.

That’s it for now because I’m HORRIBLE at ordering all of Fosters home care supplies on time each month and am always running out of feeding bags (luckily I have a couple other medical mama friends that have loaned me things when needed! You can’t get this stuff at the pharmacy..) Anyway I have one feeding bag left and an order waiting to be picked up so I’ve gotta get myself up to the children’s hospital before they lock those doors for the weekend 🙂

 

 

November 12th, 2015…

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Yep, 3 Boys! I honestly was stunned when the technician said the baby was a boy. I asked her to look closer haha because I was SURE the baby was a girl. Turns out, that I was destined to be a mom of boys. Luckily, I make pretty adorable boys and they seem pretty fond of me too. Clay’s been a total mama’s boy lately, always siding with me and driving Brett a little nuts with it haha.

But the truth of the matter is that although most parents think of the 18 week ultrasound as the “gender” ultrasound, the 18 week ultrasound is actually a diagnostic ultrasound. Of course I know better than anyone that horribly catastrophic and fatal diseases can be present that DO NOT reveal themselves on ultrasound, such as Foster’s genetic neurological disease that while being present at birth would not have been visible diagnostically in utero. It was still comforting to leave the ultrasound having had a glimpse at our wiggly little munchkin.  I have to say, because I was expecting a girl and people have certainly asked if I’m upset that the baby is not a girl, that Brett and I both were going into today’s ultrasound understanding that it’s not the “gender” ultrasound and with a different respect for that “as long as it’s healthy” statement. I’ve seen a blog post floating around the medically complex/special needs parenting community on several occasions regarding how offensive this statement is. I suppose to many parents of complex kids, hearing “as long as it’s healthy” is wishing for anything but the child that the parents of complex kids have. It doesn’t offend me personally at all. I can say that there is an unparalleled love that you experience as a parent of a medically complex child. There is an eternal innocence to my sick child, he can do no wrong quite literally and finds a way to smile through a life that has been absolutely horrible to him. I appreciate that there is much to be learnt from our sick and complex children and that the general public typically will never see or appreciate our children through the lense that we do. They will probably also never understand the depth of our love for these children. However, having witnessed the suffering that my medically complex child has had to endure in his short life and will forever continue to endure, I certainly would not wish it upon anyone and myself, continue to hope for a healthy child this time around. Well that was long winded.

Foster has been great since his ICU admission last month. I realize I never wrote about that here but I think most are aware he was admitted and essentially required a medically induced coma for a period of a few days. He was intubated and placed on a ventilator and has since recovered beautifully back to his baseline. Which is not normal but is normal for Foster.

This entire event was due to what’s referred to as status epilepticus (that’s the medical term) it’s basically a prolonged seizure or cluster of back to back seizures that cannot be stopped with traditional rescue methods. The seizure activity started fairly spontaneously at home in the middle of the night, since it wasn’t stopping I administered our first round of rescue meds. Waited 5 minutes and he was still seizing, so I administered the second round at that point. It’s important to wait the minimum of 5 minutes between doses because these “load doses” of medications have been known to cause respiratory arrest. Most people would call 911 by this point but since Foster is unique, we have access to more at home then most people would. So we were able to increase his oxygen support and since these two doses of rescue medications were not stopping the seizure, I moved on to our next resource which is two injections of a different type of rescue medication. This finally seemed to do the trick and bring him out of the seizure and he fell asleep for a few hours. However, although I have permission to do much more at home in terms of emergency treatment for Foster, we all have our limitations and at this point I had reached the maximum in terms of load doses that I’m allowed to administer in a 24 hour period. This is again because of the risk of respiratory arrest that comes with these medications at these high doses. So when the seizure started up again about 5 hours later it was time to bring him into the ER. The next 24 hours was spent in hospital doing load dose, after load dose, after load dose of several different types of rescue IV medications. When all of these had failed at stopping the seizure it was time to intubate, sedate and as it was explained to me “shut off his brain for some time and hope that it will reset itself with a break.” There could have been a couple of outcomes. Sometimes (because these kids have a low threshold for seizures) this extreme seizure activity can be caused by an underlying infection or something “treatable” and the coma will give us that time to run tests, start antibiotics and get past this hump. Sometimes there is no underlying infection and the neuro disease itself has progressed to this state of continuous seizure. At which point, we would try to bring him out of the coma after some time, and could see that he was still in this continuous state of seizing. If that were the case, we wouldn’t have had many options, return to coma indefinitely or turn off the supports and see how long his little body would last. It was certainly a stressful few days to say the least and probably didn’t help my hormonal, emotional, stressed out state that I was in the first trimester of a pregnancy as well (we all know how pregnant ladies can be!). Luckily, giving his brain this break seemed to do the trick for us and Foster recovered completely back to baseline within a few days.

Here he is at his swim class a couple days after being discharged 🙂

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He’s required rescue twice since then, once about a week after discharge and once this past weekend. The seizure this past weekend was quite frightening, with prolonged breath holding and a darker shade of blue to his body then I’m comfortable with but we’ve been able to treat  him at home with oxygen and he’s so far been responding well to the rescue meds that we have for him. He of course continues to have several other types of seizures on a daily basis but these aren’t seizure types that we concern ourselves with too much since they don’t affect Foster’s vitals and we know we can’t get control of all seizure activity in his case.

Meanwhile, Foster turned 2 years old on November 2nd! A milestone we were told on multiple occasions he likely wouldn’t reach 🙂 So that is absolutely wonderful and we had a small celebration at our temporary home for him. We’re renting a small townhouse while our house is being built (about two more weeks!!)  and I wasn’t sure if that many people would fit inside, so I wasn’t planning to do anything to celebrate but I couldn’t let this huge milestone pass by without acknowledging it in some way 🙂

So here are some recent pictures of the boys/family from the last month. Starting with Halloween, Clay is all about dragons and dinosaurs right now, he was a dragon named Smokey for Halloween. When I bought the costume it looked like it would just fit him, maybe a little on the small side but I got it anyway thinking he only had to wear it for one day. Little did I know he’d want to wear it everyday for the next year probably… So next year I’ll get him a costume that’s too big, knowing he’ll want  to play dress-up 🙂

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And here is a ridiculously adorable video of Clay on the way to his first movie 🙂 We went to see The Peanuts Movie. I wanted to take him to a movie last year but I waited and I’m glad I did because he totally understood what was happening this year and was so excited about it!

 

July 20th 2015…

This post is going to be very photo heavy! I try to print a family photo album for each year and to make that task easier  I try to keep our photos organized through the year in monthly folders. Anyway, while saving all of our photos from this summer so far into their appropriate folders, I realized that we’ve had so many fun days already this summer. So this post is sort of our summer 2015 family album recap. IMG_0287_edited-1 IMG_0319_edited-2 IMG_0329_edited-1 IMG_0331_edited-1 IMG_0339_edited-1 IMG_0356_edited-1 IMG_1694 IMG_1695 IMG_1698 IMG_1704 IMG_1708IMG_0396_edited-1 IMG_0408_edited-1 IMG_0417_edited-1 IMG_0422_edited-1 IMG_0426_edited-1 IMG_0429_edited-1 IMG_0435_edited-1 IMG_0448_edited-1 IMG_0449_edited-1 IMG_0455_edited-1 IMG_0466_edited-1 IMG_0475_edited-1 IMG_0483_edited-1 IMG_0488_edited-1 IMG_0507_edited-1 IMG_0516_edited-1 IMG_0519_edited-1 IMG_0535_edited-1 IMG_0544_edited-1IMG_1744_edited-1 IMG_1747_edited-1IMG_0558_edited-1 IMG_0585_edited-1 IMG_0598_edited-1 IMG_0599_edited-1 IMG_0601_edited-1 IMG_0606_edited-1 IMG_0640_edited-1 IMG_0651_edited-1 IMG_0660_edited-1 IMG_0671_edited-1 IMG_0673_edited-1 IMG_0685_edited-2 IMG_0688_edited-1 IMG_0690_edited-1 IMG_0707_edited-1 IMG_0718_edited-1 IMG_0732_edited-1

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June 22nd 2015

How is it already the middle of June! So much has happened since our last family update.

We sold our house and have moved into the city which so far has been awesome! Loved our house but no regrets so far, Clay loves the new area and so do Brett and I. It’s a huge change being able to walk to amenities like restaurants, a grocery store etc. This used to be a minimum 30 minute drive for us, one way. We have bought a new house in a beach community that we’re really excited about but it’s still being built so we probably won’t be able to move in until closer to Christmas….hopefully after, so we’re not packing and moving over Christmas. We’re renting in the meantime but do already have an access card for the beach in our new community which is wonderful for the summer and the boys love it. We took a two hour paddle boat ride today and got way too much sun. Clay is a little beach bum already and has pretty much woken up asking for the water and sand every morning for the last couple weeks.

Foster has been doing really well lately, he had a recent EEG which showed improvement from his previous EEG in January (where he was having continuous sub-clinical seizure activity about every 5-10 seconds.) He’s smiling a lot now and has generally been a happy baby lately (20 month old!? how did that happen so fast!) He’s also focusing on faces with his eyes and looking around the room. We have really great seizure control right now, most days we don’t see a tonic-clonic seizure (these are the ones he was having up to 200+ a day of in December.) He’s only having tonic-clonics about one day every week and a half to two weeks. It’s unpredictable when they come though and when he does have a tonic clonic, he always requires rescue meds, sometimes multiple doses of rescue meds to get him to stop. He’s also been seen by the Endocrine doctor he was referred to regarding his multiple breaks. Following his assessment by the doctor and some lab work, he’ll soon be starting treatment for Osteogenesis Imperfecta (Brittle Bone Disease.) This is totally unrelated to his neurological illness and both are actually quite rare so the poor little guy has certainly had a rough go.  The new treatment that he’ll be starting will happen in Medical Day Treatment at the Children’s Hospital which is where he goes already every month for his IVIG treatment. The IVIG treatment takes about 5 hours and the new treatment for his bones will happen every other month, three days in a row, 4-5 hour infusions each day. They’ll send him home at the end of each day with his IV still in so that he doesn’t have to get a new needle each day which is nice.

On a more exciting note, I’m actually so excited about this, we get to bring Foster to Ontario for 10 days this summer!!! We’ve never been able to take him anywhere and normally every time we go to Ontario, Foster stays back at the Children’s Hospital while we’re gone. Which always makes the trip a little sad. We have to get letters from his doctors, but we already have his neurologists approval. There’s some things to check off a list before he can come but he’s coming and that’s huge!

We had our 2015 family photos done a couple weeks ago and I love them! I’m always so surprised how well they turn out and how easy it looks. In reality Clay was running away from pretty much every picture and wanted very little to do with it haha.

Here’s my favourites:

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February 23rd 2015.

My last family post here was about Halloween and Foster’s November 2nd, first birthday party…so it’s been a while. I’m trying to think (without going back to read the last post) about what all has happened since then, I think it’s a lot haha. By the way I’m always surprised how many people actually read these posts in their entirety.

Well for starters there was Christmas, which I seem to have skipped over but it was wonderful and amazing and there would be too much to say so maybe we’ll just skip it given that it’s almost march now. But I’ll just say this was absolutely my favourite Christmas so far because Clay was so into it this year! He’s still actually singing Christmas carols and slowly realizing that it’s gone until next year, occasionally pointing out that the Christmas tree and jingle bells went bye bye. What a cutie pie.

Our house is officially for sale! Which is exciting and bittersweet at the same time. But I feel like that’s how it’s supposed to be, this was our first home and it’s where we came home to after our wedding and where both of our boys came home to after their births, so I feel like it’s supposed to be a special place that’s always remembered with love and we’ve certainly loved our time here. I think we’re both excited about the prospect of living in the city as well though and the new community that we’re looking at buying in. So the house is listed (as of only a couple days ago) but of course its not really buying/showing season yet so we’ll see how much action happens, we’ve had one showing so far. We haven’t bought anything new, I think our plan is to wait until this place sells first and that way if the right deal doesn’t come along we can always wait another year or two and try again.

Here’s a collage of house photos from our listing if anyone wants to buy a nice 4 bed, 3 bath,  rural abode 😉 let your friends know, thanks!

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Otherwise 2015 has been pretty eventful so far, we’ve spent a night in ER every other week so far, Foster broke both of his legs during a seizure and is currently all casted up and Clay has had a never ending cold (going on about 4 weeks now.)

For a Foster health update: In December, we were seeing up to 200 seizures a day, sometimes the seizures were spread apart enough that he could recover in between and other times they would start to cluster and the cluster would get closer and closer together until he wasn’t able to recover in between. We’d give him rescue medications at home or go into the ER if the rescue meds weren’t working. The week of Christmas, he spent one night in the trauma unit trying to get the seizures to stop because he’d been seizing every 3-5 minutes for many hours and then continued to seize over 50 times in the hour following rescue meds at home. But honestly, that was all predictable and what we were quite used to. We actually changed up his rescue meds in December and were trained to give IM injections of Fosphenytoin at home following two doses of his previous rescue medication so that we can hopefully avoid some ER trips.

On about January 2nd or 3rd, I’d realized that we hadn’t seen a seizure in probably the last 24 hours, nothing the next day, nothing the next day and Foster was actually really alert and he even tasted his first food (he can’t really eat it, he’s not allowed to swallow but we’re allowed to do “taste therapy”.) So after three days of not seeing a seizure I contacted the neurologist and they decided to do an EEG to see what was actually going on neurologically. So we went in for two EEG’s actually, he did about a half hour one in the middle of the week and then followed that with a 24 hour one a couple days later. And apparently on both EEG’s the neurologist said that his EEG was actually worse then it had ever been before and that he was having sub-clinical epileptic activity (which is essentially your brain seizing even though you can’t physically see any sign of it) about every 10 seconds continuously. So for a healthy child, this would be really bad and every effort would be made to stop it. But in Fosters case, we have to weigh the good and bad. On one hand, cognitively, continuous seizure activity is horrible but on the other hand, we weren’t seeing his typical seizures that are in his case very life threatening, have caused respiratory and cardiac arrest on multiple occasions and have caused him to break bones. Also the staff neurologist doing the EEG said that the likelihood of them being able to stop the sub-clinical activity (short of complete sedation, medically induced coma, no quality of life) was very unlikely and since his vitals are stable through this activity, we didn’t see a point in having him sedated.

But then he started seizing, he actually had 9 seizures about two minutes apart so I’m not sure which one he broke his legs with but he ended up with two broken femurs. The doctor explained that because he’s not mobile and doesn’t bear any weight on his bones, the bones actually become very thin and fragile like an elderly person and can break very easily.

I think most of you have seen your share of seizures from Foster, so the problem is when he pulls his legs in-front of his body and presses his heels against each other with all his might, in sort of a frog leg position, Then eventually his legs will snap one over the other. Thankfully, he hasn’t had another seizure (I mean aside from the continuous stuff that we can’t see happening) since so hopefully he can heal up well. But I guess this could be an ongoing issue with seizures and he’s been started on a couple different supplements to help strengthen his bones for the future. This kid can’t get a break!

In the meantime, he’s had lots of friends leaving him messages on his casts. I was thinking I’d keep his casts actually, but they come right up to his hips and he’s since had a couple of bad “blow outs” from his diaper so I’m pretty sure the casts will be in the garbage as soon as their off now haha.

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His swelling has started to go down now and there’s even a little bit of room in his cast, not sure if that’s a bad thing but he’ll be going back this week for another x-ray anyway. The orthopedic doctor said that babies bones heal very fast so he shouldn’t need the casts for too long, she thought maybe only three weeks. She said his right femur wasn’t as bad but the left femur had to be realigned for casting so he may have that cast longer. By the way, Clay was jealous of Foster’s artwork so we drew all over his legs with markers too….and it still hasn’t washed off..oops!

In other Foster/health updates, Brett and I both had our genetics results come back and neither of us are carriers of the genetic mutation that Foster has which is the known link to his disease. So no answers there in terms of why this happened but we do know it’s not an inherited gene mutation.

So speaking of friends signing Foster’s cast, he even got a special visit from my friend Brettney all the way from Ontario! I’m sure she had a super exciting time here haha I haven’t done too much lately with one child sick with a cold and the other with two broken legs and a whole bunch of medical equipment, our days can lack some excitement. But we did get out to ski on Friday so that was a fun day at least!

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lol Brett and Brettney made fun of me for putting the snow filter on that picture for Instagram because we were inside an enclosed gondola haha I felt like it added magic 🙂

 

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I think that’s about it for updates (thank goodness because it’s 2:00am and I need to sleep…although I’m on Foster duty tonight so it might be sparse) but I do have a fun weekend getaway to New York City booked with two of my girlfriends Becky and Kara in a couple weeks which I’m so super excited for!

 

 

xoxo

 

P.S. Believe it or not I actually went through and deleted about half of this post and it’s still way to long!

 

 

Foster Bears 1st birthday and some fall updates

Oh it’s been a while! Brett keeps reminding me that I need to update this with a new post, I haven’t even posted anything about Halloween or Foster’s 1st birthday yet. Our little Foster turned one way back on November 2nd, Halloween weekend and we threw him a little party to celebrate here at the house and had some friends come out too which was really nice.

One of my best friends from Ontario,  Alison, flew out with her little baby River to celebrate Fosters birthday with us. It was so nice to see them, River is probably one of the cutest babies ever. I just can’t get over how much I think he looks like his mommy, it’s just her face on a baby’s body. Wild. That must be what people think when they see Clayton, I’m always hearing how he looks sooo much like Brett haha.

We actually had a really fun fall and I’ve got lots of photos. We went to the corn maze with the boys which is something we’ve done every year since Clay was born. It get’s more fun for him each year, I think next year it might be a full day event! Then we had Halloween, which I also took lots of photos of because it was our first year taking Clay trick or treating which was exciting and also it was Fosters first Halloween in general.  Side note, a couple of homes were handing out non edible treats like miniature play-dough or stickers which I thought was an excellent idea for kids that are on medical diets or non oral eaters. Of course my Foster is a bit young to appreciate those things but I’m certainly aware of countless older children from the hospital who would love it. Of course the boys looked extra adorable in their costumes and I’m pretty certain Clay is a fan of Halloween. And then of course lastly we have lots of photos from Fosters birthday party 🙂 It was bear themed because he’s our bear.

These are from the corn maze:

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Here is Halloween, Auntie Julia brought back this fighter pilot outfit (with custom McGillivray badges) from Kandahar on one of her tours for Clayton. All I had to get him was aviators and he was ready to go. Foster wore Clay’s chick costume from last Halloween, which I was super excited about because I loved it so much last year and wasn’t sure if it would fit Foster yet. Its a size 12 month but Clay was 18 months when he wore it so its a pretty big 12m and little Foster bear’s only in 9 month clothes at 13 months now. So Foster looks huge in this costume 🙂 Huge but adorable of course.

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Foster’s birthday, this was a pretty special day for us and one we weren’t certain we’d see on many occasions. When Clay was a baby I took monthly photos of him and made boards outlining all of the wonderful milestones he’d achieved, like any proud parent 🙂 Things started out that way with Foster too but it became a challenge when at 4 months and 6 months and 8 months and 10 months, the only thing that has progressed is his illness. The monthly photos and boards stopped as I learnt that those milestones had no impact on my love for Foster. But celebrating his first birthday is one of the only milestones we have been able to celebrate with Foster so we wanted to have a special day for him, though I’m pretty sure he slept through most of it. Brett decided we should have a bear themed party since we always referred to Foster as our bear (Fuzzy, fuzzy bear, the bear, Foster bear) and I thought the “Caution don’t feed the Bear” signs were perfect for our tube fed love 🙂

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Now we’re fully into Christmas at our house but that’s a whole other post!

xo.

September 23rd

Well I guess it’s officially fall now, we had a really nice summer at home and so many visitors.  My Mom was out for most of the summer, my friend Becky came for a lovely weekend visit, Julia is back from Afghanistan and Brett’s Mom and Jim just left from a 10 day visit. The boys got to be little tour guides and took a few nice day trips for walks in the mountains. We also took Foster on his first family overnight trip, not too far just a few hours north to visit some family. Here’s a little photo recap of the summer:

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So this picture is one of my favourites, nothing really special about it I just think Foster looks so cute and squishy, which he is. I think we took this picture the night before the Dairy Queen Miracle Treat Day fundraiser. So so many people went out and bought blizzards in honour of our little Foster bear and we were sent many pictures of all the tags filled out for him 🙂 Very special! For anyone that doesn’t know what Miracle Treat Day is, its organized by Dairy Queen and all the proceeds from blizzards purchased on that day are donated to your local childrens hospital. Here’s a few pictures of some of the Dairy Queen tags we were sent.

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I think this was the day Clay realized his love for ice cream….it’s a common request now. We actually skipped dinner that night and everyone (including Clay) just had ice cream for dinner.

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I don’t have too many pictures from this day in the mountains, this was during Linda and Jims visit, hopefully I can steal some of their pictures once they get settled back in at home. Jim and Clay were playing with one of the birds and Clay thought it was the funniest thing ever, I have a nice giggly video of him laughing at the bird that I’ll post at the end. Here’s a couple cute pictures.

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And of course lots of snuggles with Foster…

 

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So it’s not only the end of summer, it’s also the start of our next hospital stay, Thursday Foster’s being admitted for his big surgery.  And I ordered the cutest little Tubie Whoobies….okay any non hospital Moms probably have no idea what I’m talking about but for anyone that does know what I’m talking about, how cute are these! I ordered him the hedgehog, football, tough cookie (it’s a chocolate chip cookie with a bite taken out of it and it says tough across it) and a Rudolph for Christmas. Basically, these pads go around the feeding tub plug to absorb any liquid and they’re just cute and festive. I included a picture of what the Gtube (feeding tube) should look like once the surgery is complete and he’s all healed up. You can even get customized awareness ribbons.

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Speaking of Epilepsy awareness…our little Foster Bear finally has a diagnosis after 10 months of tests. His prognosis hasn’t changed, which I’ve talked a little bit about but it’s certainly nice to have some answers even in terms of what to expect next. So Foster has a rare and significantly life threatening form of Epilepsy…I know when most people think of Epilepsy they think of all the people they know that either have their epilepsy controlled or grew out of it but very severe and even some fatal forms of epilepsy do exist. Foster’s very specific diagnosis is called SCN8A Epileptic Encephalopathy. It’s very rare but we currently know of about 150 affected families worldwide. I know a lot of people do have Epilepsy and since I don’t want to scare anyone into thinking that their loved ones epilepsy could evolve into this, I’ll say that  Foster’s specific form of Epilepsy most commonly starts within the first year of life and often within the first days of life (as was the case with Foster.) There is a wide spectrum with some children developing more typically then others. Or, as in Foster’s case, it can presents very much like a neuro degenerative disease that it is aggressively progressive and the child can lose all of their basic life skills within a very short period of time. There is no treatment currently although some children have had some success with the ketogenic diet and IVIG treatments, both of which Foster has been on for about 7 months. I think both of these have helped Foster slightly, Foster’s seizures have gotten shorter which seems to correlate with the start of the keto diet and the IVIG treatment (which he receives once every 4 weeks) does seem to give him a little bit of relief although its short lived, lasting about a few days only. Aside from the arrest in cognitive and motor development, the most significant symptom is of course the seizures which will continue to progress and as stated above, generally cannot be controlled by any current medications. I think in my last post, Foster was having about 45 seizures per day and he currently can have as many as 140 seizures per day. This progression has been very rapid over the last month. I stated in our last post that his seizure frequency had previously been progressing at about a rate of 10 extra seizures a day/month. Clearly that wasn’t the case this month. The genetics doctor told us that the life expectancy depends greatly on how the child is presenting. We asked our neurologist about where she felt Foster was on the spectrum and she said he is on the severe end and that it would be reasonable to assume he might not make it to age two.  So what does that depend on? Well there’s a few things, the many of kids with this diagnosis pass from pneumonia or respiratory complications. The part that’s been more severe with Foster has been the seizure progression. And it sounds like these kids can continue to progress until they are continuously seizing and placed in a medically induced coma. That or have very severe seizures causing respiratory and cardiac arrest. SCN8A kids also have a significantly high risk or SUDEP or sudden death, often in sleep.

I’ve mentioned previously that all of Foster’s genetics tests had so far been normal and that was the case until about two weeks ago. After digging further and going out of the country for specialized tests, it was found that Foster had a mutation to the gene SCN8A and this specific gene is also linked to this form of epileptic encephalopathy.  So then the question became whether this was an inherited genetic mutation or if the mutation happened spontaneously in Fosters development (they call this de novo.) I’m not a genetics specialist so you’ll have to excuse my poor explanation but I’ll try to explain it as I understand it. The genetics specialist that we met with explained that we receive two copies of every gene (one from our mother and one from our father) and that all of our genes are either recessive or dominant. If a gene mutation occurs in a recessive gene, that means that the parents can be carriers of that gene mutation without themselves showing any signs or symptoms of it. An example of this would be the blue eye gene. A person that doesn’t have blue eyes can still be the carrier of the recessive blue gene and therefor could have a child with blue eyes. However, if you carry a dominant gene, it would be expected that you would show the signs or symptoms of that gene. So in Foster’s case, his testing shows that the specific gene mutation that he carries is a dominant gene which means it’s not believed that Brett or I are carriers of that gene or that it could be inherited by any of our children. Rather, it was spontaneous in Foster. It’s reasonable to assume this because knowing that it’s a dominant gene, if Brett or I carried that gene mutation we should have serious health problems and most likely severe epilepsy. Either way, our blood was taken last week as well to send off for testing and those results will be the final confirmation on that.

I feel compelled to share all of this here for a couple of reasons, I’ve mentioned before that it’s much easier to explain everything here rather then to have this conversation on repeat with everyone that I talk to. I also feel like all of our friends and family that have been following this have really been on this journey with us. If I look back at some of the first Foster posts, he was only having one or two seizures a day at one point and you’ve all been kind of travelling this road with us and I know you’ve been checking for updates.

And also it’s for epilepsy awareness. Brett and I are constantly complaining to each other about things people say to us like “oh hopefully he’ll grow out of it, you never know.” K, here’s the thing, at one point we longed for those stories of hope, it was all we wanted to hear about. It gave us hope that our dreams for Foster could still come true. But at a certain point, like when specialists are telling you that you have a terminal child, hearing things like that feels dismissive. I either put a wall up and think that the person didn’t listen to anything that I just said, or they’re implying that I should just try to think positively. Which in my mind feels like they think I don’t have the right to feel whatever I’m feeling. I realize that’s likely never the intention and a lot of people really don’t know what to say, a great response is actually much simpler then people realize. “That sucks” is the perfect response, it totally validates what we’re dealing with. The worst is probably when we explain Foster’s epilepsy and then someone says “oh you know, I have a cousin that has that.”….No…you don’t. Epilepsy is probably the broadest diagnosis in the books. All it takes to be given a diagnosis of epilepsy is two unprovoked seizures in a lifetime. Clearly that is not the most likely fatal disease that Foster is suffering from. But as I mentioned before, these severe forms of epilepsy are rare and if anything the epilepsy community as a whole is fighting to make people feel comfortable with the word epilepsy. Most epileptics will go on to lead totally normal lives, they can have successful careers and raise children, they can lead lives that would never indicate to anyone that they have epilepsy. And for this reason, most epileptics want people to think of the word epilepsy as a minor detail. The awareness that’s out there is to encourage people to feel comfortable around epileptics, to know that they most likely wont have a seizure in your presence and that they certainly are not contagious or dying. While I can understand that this is beneficial to the majority of epileptics, it certainly doesn’t benefit those who are severely suffering. But how can I blame people for their instinctual responses when they really aren’t aware of anything different. So even though epilepsy awareness month isn’t until November, it’s important for our personal sanity that the people in our circle do understand the difference. And I guess that’s my job to educate people on the matter.

Okay so now to cheer everybody up (at least it works for me) here’s a video of Clay laughing at a bird.

xoxo.

Kendra

 

 

July 31st…

Finally getting around to writing our first update since we’ve been home 🙂 I can’t even think right now of all the things we’ve been up to since our last family update but I think I’ll maybe just start off with an update on our little Foster bear since I have a feeling that’s what a lot of our family members are looking for.

(It’s too long, I’ll tell you right now before you get into it that this post is way to long…and probably mostly boring medical stuff, skip to the bottom if you’re too bored, there will be some pictures.)

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Foster is doing really well actually! I realize our view of “really well” is a little different from the general public haha but I mean he hasn’t scared the crap out of us in a couple months 🙂 He’s actually been really stable since we’ve been home from the hospital. Even his pediatrician said that he’s been remarkably more stable then he was anticipating based on his handover from the hospital. And considering that in hospital, we were lead to believe Foster might not make it through the summer, he’s doing great 🙂

His symptoms are still progressing, especially his seizures. The seizures really are like chasing a moving target and the frequency seems to increase  by about 10/day each month. He’s currently having between 45-55 seizures every day. Sometimes that worries me a lot, I wonder if they keep increasing and increasing, if there will come a point when he’s just continuously seizing and we wont have the periods of Foster in between anymore. And the seizures are changing in appearance now as well so it’s a little unclear when exactly it ends. Although generally I think they are all less then a minute, which is a big improvement from when all of his seizures were around 6 minutes long. We haven’t had any of the long 30  minute seizures since the last one happened in March and we also haven’t had any seizures requiring any kind of resuscitation since March 🙂  Although he does have apneic moments following seizures, generally caused by reflux and airway blockage which can require a little bit of deep suctioning and help to stimulate breathing.

Since we’ve been home, vomiting and reflux have become a big issue. The bigger issue, is that he doesn’t have the ability to protect his airway and so when he does bring up large amounts of fluid, he allows all of the fluid into his lungs and then has a few hours when he’s struggling really hard to breath. Some weeks this happens more then others, but in any case the work of breathing occurs multiple days a week. The vomiting occurs multiple times a day but I usually try to get to him quick enough to flip him on his side so it’s not always an issue.

In any case, he has a consultation next week to undergo three procedures. The first one is a surgery to place a G tube. That procedure seems like it’ll be a go for sure, I understand that they would do this procedure for all children that are tube fed long term. Essentially, some children only need to be tube fed for a temporary period of time. For example, when Foster was in ICU at 2 weeks old, when he didn’t wake up for a few days following a seizure, they inserted an NG tube (through his nose and down his throat, into his belly) because they needed to keep feeding him. But believed that once he was alert, we would be able to gradually work him back onto oral feeds. Which we did. So in that case, the tube going through his nose was a perfect, not too invasive, temporary solution. But then at three months old, when Foster started to show signs of no longer being able to protect his airway the tube was re-inserted and this time, it’s proven to be a persistent problem. So now, an opening directly into his belly will be made where a G tube will be placed. And his feeding tube will connect to that. Most families find this a beneficial long term solution for many reasons. Some being that it’s discrete, particularly I would imagine for older children who are able to communicate and socialize, it’s nice for them not to have a tube attached to their face. The tape also irritates Foster’s skin and I’m guessing it doesn’t feel comfortable having stuff taped to your face all the time. But also, currently I have to insert a new tube every week and I have to test that it’s in the correct place (being his belly and not his lungs…that would be bad!) before every feed and every medication. Which can occasionally be a really annoying experience because depending on how the tube is lying in his belly, it can be really difficult to get fluid out to test. And then if you can’t get anything you have to take the tube out and re-insert until you are able to get something. And I guess with the G-tube you don’t have to do those things because it’s always in his belly. But I’m sure I’ll learn to be frustrated with G-tube issues at some point haha.

Okay, the second procedure (P.S. sorry this is such a lengthy post but if you’re still reading I assume you’re still interested) is a Fundoplication. This one I’m less certain on, I’ve been told that it’s a procedure that used to be done more frequently but is now considered to be somewhat controversial. And that’s about all I know so far about that, although I guess I’ll learn more at his consult with the surgeon next week. Either way, I’ve been told that his doctors feel it’s a necessary procedure in his case. Basically, they’ll do something to the top of his stomach or the bottom of his esophagus, which will prevent him from being able to bring fluid up and therefor prevent him from allowing his lungs to fill with fluid. Will this be the solution to all of his breathing issues? No and his lungs are still expected to be effected long term by the secretions that he’ll continue to be letting into his lungs from above. But stopping the frequent large amounts of formula from entering his lungs will certainly slow things down in that department.

The third procedure is putting tubes in his ears to help drain fluid because he’s had fluid in his ears for the past 9 months. That’s a simple one. And they’ll do all three procedures on the same day so that they only have to put him under once.

But I guess the ear tubes bring me to another new point, we’re told Foster has likely lost his hearing now. But I’m not totally sold on that one just yet.  He had an ABR last month which is a neurological test that they do to test if the audio nerve in your brain is responding, giving you the ability to hear. He has to be asleep for this test because they’re looking to pick out one single wave on the screen as they make a sound in his ear. One ear at a time. It’s important that he be asleep because if he’s awake then any muscle movement, like moving his eyes, would make it too difficult to pick out the little wave they are looking for. Anyway, they tested his left ear and said they weren’t able to get a response from the nerve they were looking at. So they said it looks like he can’t hear at all out of that ear BUT then he woke up and they weren’t able to test the other ear. I’m pretty sure it’s possible for someone to lose hearing in one ear and not the other right? Because our lovely nurse that hangs out with Foster bear three days a week told me that yesterday he heard a helicopter when she was taking him for a walk and looked up to watch it and then did the same thing as a car drove by. And I’ve seen him jump on multiple occasions to a loud clap or pantry door closing. So anyway, they’re thinking of doing the ABR test again in OR while he’s put under for his surgeries. And I suppose the fluid in his ear can have an impact as well on his ability to hear although the technician said the fluid shouldn’t impact it to that extent.

That’s certainly not the full Foster update but it’s a snapshot. We’ve been really happy with home so far and the support that we’ve received. I can’t complain about anything. We didn’t end up hiring a nanny as I’d mentioned in another post. We do have an overnight care aid 4 nights a week that we’ve hired privately and during the days Alberta Health Services, provides us with a nurse at our house on Monday, Wednesday and Friday every week. Which is great so that I can run around with Clay to get groceries and take Clay to an activity or playdate.  For the first month and a half after being discharged, we were for sure still going to appointments either with our pediatrician or at the Children’s Hospital about 4 days a week. But things have slowed down now and we’ve actually spent most of July just around the house which has been nice.

Okay seriously, that’s enough medical stuff, even I’m bored now. Here’s some cute pictures of my boys hanging out on the couch 🙂

 

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I wish I could tell you I just walked in the room and found those two like that but the truth is I somehow managed to snap a few pictures where Clay looked somewhat happy in between a couple of meltdowns hahaha life with a two year old! Oh well, it sure looks like a special moment between the boys 🙂

 

So what else has happened since we’ve been home…

We took the boys on an outing to Butterfield Acres with our friends.  Clay had fun, he’s not the most adventurous little guy, he’s actually very cautious and really takes his time thinking about if he wants to do something. So I was pretty happy that he actually got right in, pet the animals and even milked a goat!

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These ones are all from the Canada Day festivities in our community. I was so excited to take the boys out to watch the fireworks, I even kept Clay up until they started at 11:00pm. But let me tell you, I have never seen fear like that night, oh my goodness! Clay would have hidden under the car if I’d let him, he was screaming, clinging onto me so tightly and hiding his head. It was pretty cute but he legitimately thought something horrible was happening so we quickly got back into the car and went home. I never expected him to be so frightened by it! Last year he was great but I guess he was too young to know what fear was at a year old and now he was old enough to know that the loud banging and stuff in the sky was not a normal part of his life. Anyway, I love these pics from Canada day because Clay looks like such a proud big brother!

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Here’s some more snaps of our life over the last couple of months

 

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Clayman and Foster with some of their little buddies

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This is a recent one of Brett and I from our weekend in Squamish at our friends Jack and Katie’s wedding. We had a great time and a nice break. We drove out with Clayton but left him at Grant and Erna’s house for the weekend. They live about half way between here and Squamish and Clay was a great traveler. Foster spent the weekend at the Flames House over at the Hospital. But his Nana visited him regularly for cuddles while we were gone.

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We’ve also had a couple sessions of family photos done over the summer, for those of you on Facebook, you’ve probably seen lots of them but we’re waiting to get back the most recent ones so since this post is long enough, I think I’ll wait until we have them all back to post those. I’m so excited to see the rest of them though!