May 6th…

(Just realized this one never was posted, so its from May and I just figured I’d post it anyway now.)

Been a while! We’re still residents here in the hospital but getting closer to going home every day ๐Ÿ™‚ Foster has been having lots of day passes and had his first two overnight passes this past weekend which was lovely. Brett and I spent Sunday afternoon trying to get his nursery ready for him. Foster has officially kicked Clayton out of his room. Clay used to have the bigger room but now with all of the equipment that’s coming home with Foster and the fact the someone will be up all night in his room with him every night, it made more sense for Foster to get the bigger room. So now I have two bedrooms to organize and decorate, one for each. That will be a fun project for the next few months, it will be nice to have normal mommy projects to focus on rather then medical stuff.

And speaking of normal mommy projects, Clayman turned two years old on Saturday! We had a little birthday celebration for him with all of his little buddies in our basement. It actually came together okay considering that I was at the hospital right up until the day before the party but luckily I had some help. Julia and a friend of ours Valerie, baked up all the cupcakes and dirt cake and my friend Jade had found a bunch of mustache themed decorations and put them all on hold for me. And then probably my favourite thing was the cute little bow ties my mom made for all of the little guys! We had bow ties and little foam glasses with mustaches attached to them for all the kiddos. So those were all great time savers! I didn’t get around to taking a single picture during the party but luckily my friend Nada took tons and loaded them all up onto Facebook so I was able to steal them for my memories ๐Ÿ™‚ Clay has definitely started acting like a two year old…oh…my…goodness. We have a slide in our basement and seriously any time a child got within 5 feet of that slide Clay ran over and pushed them down! He’s a handful now. I think he was a little overwhelmed having so many kids in his space and playing with his toys. He’s used to going over to their houses and playing with their toys which he’s just fine with haha. We didn’t open gifts during the party, I think Clay would have found it all too overwhelming but he was so spoiled by everyone. He was literally drowning in gifts when it was time to open presents. I’ve decided not to move any of his new toys down into the playroom until I have a chance to first pack up all of the toys that he no longer plays with. It’s easy to just add to the collection but then it’s impossible to keep it all organized.

Even little Foster was able to be home for Clayman’s birthday party. He slept through the whole thing, he’d had a bit of a rough morning with 23 seizures between 8:00am and 10:30am (the party started at 10:30) so needless to say, he was exhausted. We’re back in our hospital room now and Foster is having another MRI tomorrow. His soft spot has been swollen for the last three weeks. They’ve been measuring his head circumference once a week and plotting it on a graph and I guess that his head is growing a little faster then his body and then with his soft spot also being swollen they want to take another scan of his brain and check for fluid in or on his brain. So that’s tomorrow. He’s had a couple MRI scans in the past so at the very least they’ll have something to compare and see if there are any obvious changes going on in there.

Here are my lovely stolen pictures from Clayton’s party ๐Ÿ™‚

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Clay didn’t know how to blow out the candle at his party but at dinner time Brett lit another candle, brought him out a cupcake and we sang happy birthday again. This time, he got the blowing thing down and then wanted us to light his candle and do it over and over and over again…..I think we sang him happy birthday about 4 or 5 times and he kept blowing out his candle!

 

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April 22nd…

We are about to embark on the journey of caring for Foster from home and I cannot wait! It’s bittersweet to leave our hospital home, it will be lovely to be at home as a family and of course has been heartbreaking to learn that there is not much that can be done to help our little Foster. The fact that our doctors believe that little Foster’s disease is progressing and not responding to treatment is a reality that Brett and I along with our family, has had to face and learn to accept for the past month. Our doctors do not know what Foster’s life expectancy is at this point. However, it is mutually felt that he is “stable” or as stable as Foster can be, for the time being. And with that in mind, we would like to get set up to be able to care for Foster in a more loving and thriving environment during these times when it is safe to do so. We realize that Foster is sick but in reality, much of what is happening here can be done from home. We can check his vitals from home, We can support him with oxygen, offer suctioning, operate his feeding pump, monitor his blood ketones and glucose, administer medications and provide seizure care all from home. Of course with a little help (we’re in the process of hiring a nanny) because I’m not super mom and Brett needs to work. The fact is that there is actually very little that is done at the hospital for Foster, that we can’t do from home and after spending most of the past 5 and a half months in hospital, we’re really ready to start enjoying the limited time we may have with our child. Part of what has kept us in hospital so long has been that Foster has suffered multiple respiratory and cardiac arrests with seizures. And of course resuscitation during these events is a measure that we cannot provide from home (though we will have an overnight nurse in the house as the middle of the night is when Foster requires the most support). We’ve come to feel that some of the measures provided in hospital are not beneficial to Foster. CPR, while a wonderful resource in many situations (like if a child is drowning) isn’t going to cure Foster’s underlying disease. Having our child’s rib cage broken week after week to keep his heart pumping, doesn’t sit well with us. We want to provide all of the medical support we possibly can, to extend his life as much as possible, in a loving, non invasive, non harmful way. We want Foster to feel loved, enjoy being a baby, be cuddled and kissed, experience the sun and be a part of our family memories. And our doctors are in full support that this is the best way that we can support Foster at this time. So our transition has already begun. While we sort out all of the homecare details, we are allowed unlimited day passes and we have been moved into a care by parent phase in the hospital. So rather then having nurses run in every time something happens, we can care for all of Foster’s needs on our own, while still being in the hospital setting if we have questions. Foster came home for a few hours on Good Friday and Saturday and Easter Sunday and we have plans to take the boys to Telus Spark on Friday and hopefully the zoo as well if it’s nice out this coming weekend.

So now it’s time to decorate a nursery (something we haven’t had the chance to do yet) and finally be Mommy and Daddy, doing normal things with our boys! Having said that, there’s still equipment to obtain and funding to be approved and details in the works so we could still be in hospital for a while.

In my excitement to finally start experiencing and enjoying my little baby, I’ve been reading lots of baby blogs and articles online and I have toย say, it’s not for me this time haha. That was totally my thing with Clay, I was really into reading up on everything baby, breast or bottle, co-sleeping or crib, cry it out or no cry but these hot topics all seem like really mundane issues when your options aren’t to cloth diaper or by huggies but rather will my baby live or die. So bare with me Mommy friends if I don’t relate at times ๐Ÿ™‚ For example,ย I can’t breastfeed my baby because it’s not safe for him to eat orally or have large volumes in his tummy. So he’s fed through a feeding tube with the assistance of a pump. And I can’t offer my baby breast milk because he’s on a special diet to manipulate the presence of glucose and ketones in his brain to attempt to reduce seizure activity. So maybe it wont be “normal” outside of the hospital but it’ll be wonderful. This time around, parenting will be less about the little details and more about relishing in the moments. I can’t wait to start! Although I do love this place and will miss seeing our little hospital family of nurses and doctors and support people everyday ๐Ÿ™‚ We’ve been told that any little cold or flu that Foster catches will likely require another admittance at the hospital because his body can’t handle what others can, so I’m sure we’ll be back lots.

Here are some pictures from the past weeks:

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Clayman napping in the washroom ๐Ÿ™‚ย IMG_5918 IMG_6019

First evening stroll from the hospital.

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Pretend talking with his cousin Jack.

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Foster dreaming

 

I’ve been meaning to write for a while about how wonderful this place is but I haven’t gotten around to it. ย I remember the first time I drove here with Foster. He was two weeks old and his doctor had made a referral for him to be seen by a pediatric neurologist, it was supposed to be just a 30 minute appointment and I knew that driving up to the building. But I’d never actually been to a Children’s Hospital before, I had no idea what it was really, aside from hearing the horribly sad stories about the children during radiothons to raise money. I remember feeling really sick driving up to this building with my newborn baby. I thought it was so eerie that the outside of the building looks so happy, like it’s built from leggo blocks with these big cheerful letters spelling out the sign. And yet behind those walls were such sick kids. In our first weeks here, I thought that working at a children’s hospital would be the saddest job in the world. But after being here for a while, you start to see behind the walls and into the rooms. And I have to say, the sights are really beautiful, really makes you see how loved these kids are and how celebrated their lives are. No child is taken foregranted in this place, every minute is appreciated. Even when a baby is up crying all night long it’s an opportunity for the mommy to hold and comfort that baby, an opportunity that might not exist next month.

I was chatting with one of our doctors the other day and in conversation mentioned that we don’t have a family photo of the 4 of usย ย (I guess in reality, we do have one picture of the 4 of us from Christmas time but Brett doesn’t particularly like that picture.) Anyway, a photographer arrived at my room the next day. How amazing is that? They also had their Child Life lady come by and make a little keepsake of the boys footprints side by side. We have an exceptionally wonderful outdoor facility here for the Children and now that the weather has warmed up a bit we’ve been able to go out to play during the days. We have a huge playground, mini golf, soccer and basketball areas, a race track and numerous indoor play areas that Clay has been taking advantage of on the cold days. I also did not realize just how family oriented this hospital is. I spent over two months trying to make arrangements for Clay during the days because I had to be at the hospital with Foster. Then eventually I decided that Clay had to start spending the days at the hospital because only seeing his Mom on weekends wasn’t okay (I don’t go home at all during the week.) So my perfectly healthy child Clay, moved on into the hospital as well and has happily spent the last two weeks here every day. He plays most of the day and naps all afternoon in a play pen in our washroom ๐Ÿ™‚ Apparently, Clay is not the only sibling of a sick child that subsequently also lives most of the time at the hospital. There is actually an entire program here dedicated to those kids. The volunteers come to our room to pick him up every morning at 10:00am and bring him to playgroup for 2 hours, all free of course. And then there’s another daycare downstairs that you can sign siblings into also for free, if you need it at a different time then the playgroup.

So since I just got these, here’s some family photos from our home away from home.

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April 5th…

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I realize I haven’t updated in a few weeks and I’m probably not going to fill in all the details, so today this may seem like a slightly unorganized rant but that’s kinda how my life feels right now.

Facebook has triggered this post tonight, I think I need to take a break from social media for a while. My media feeds are full of pictures of babies and pregnancies and I’m just not in a place where I can look at those updates and feel anything other then self pitty and resentment. I know, it sounds so horrible to say that. But to see pictures of all these other babies who are Fosters age and younger, growing and developing as they should, sitting up and rolling over, crawling and interacting joyfully with their sibling… It’s not that I don’t think all these other families deserve it, it’s just that I think that I deserve it too and Foster and Clayton and Brett.

I was so excited to have these two adorable little boys, only 18 months apart. They were supposed to be best friends and look like little twins chasing each other around. And now our doctors think not only that Foster may never walk or develop mentally, they aren’t even sure if he’ll live or for how long. I just feel like so much has been stolen from all of us and especially from little Foster. I see pictures of all these other families on trips vacationing with their beautiful happy healthy babies and I so want that for us. I want to be living freely with my children not sitting in meeting rooms at the hospital talking about resuscitation orders. I can’t lose Foster, I can’t.

He may not be developing but I can hold him in my arms. He’s the most adorable little boy. His precious face and huge eyes have stolen my heart. He’s squishy and warm and wonderful to cuddle. But he looks sad, and he’s had a hard life. When I arrived at the hospital today he had a new I.V. in the side of his head. The one in his arm had fallen out, as they seem to every four days or so. He had a bruise in the middle of his head from a failed attempt at another I.V. along with a spot in his arm and on his hand. Foster doesn’t even flinch anymore when the put needles in him, he’s so used to it.

He has periods when his heart will start racing at 230 beats per minute but he otherwise looks content and is resting. One of the nurses suggested he might be upset. She said “I know he doesn’t cry but if a baby his age were really worked up it wouldn’t be unusual for his heart to get up to the 200’s.” Since then, I have been picking him up and rocking him every time I see his heart over 190. It almost always drops down to a reasonable resting rate quickly. This is my way of knowing that Foster knows when he’s in Mommy’s arms and that he loves me.

I love him to pieces, I can stare at his little face all day long. He’s wonderful and adorable. And yet at the same time, seeing a status on Facebook like “Six months old and already crawling” with a picture of a happy laughing baby is gut wrenching. ย On the other hand, I also saw a quote on Facebook today that I actually took to heart and wrote down, so I guess social media has its pros and cons. The quote (if you’re wondering) was posted by my friend Ciara “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow.’ ”

I was sentย a message today asking if Foster was still tube fed and I didn’t respond because I didn’t know how to answer. Having Foster work his way back to eating orally used to be a big deal to me. But I have a very sick baby and at the moment how he is fed is irrelevant. Just keep him alive. I know that people are starting to become frustrated with me or worried because I haven’t returned or answered phone calls. My Mom called tonight sounding worried because one of my friends had contacted her, worried, because she hadn’t heard from me. ย The truth is that when I see someone calling, I really don’t know what to say. I don’t want to talk about it, I really don’t. And at the same time, I have lived the majority of the last 5 months in a hospital room with the rest of my life on hold so I wont have anything else to talk about. Then again, I don’t want you to stop calling or caring because I need your support. I don’t know what I want.

Here’s what I want, I want our doctors to find out what’s causing Foster’s seizures, I want them to stop, I want to never see a blue baby again, I want his brain to heal and for him to grow into a happy healthy child. And, I want to go to Greece with my Husband.

If there is a silver lining to all of this, it would be the amount of love that we have experienced from all of you. I can’t even recall all of the acts of kindness that we have received since this journey began. People that I would never expect to even think about me have gone out of their way to send gifts and cards and care packages. I have been blown away from the kindness we have witnessed. Friends now feel like family and have been so supportive in terms of caring for Clayton and spending long hours visiting and bringing wonderful meals to the hospital. And Foster has received some wonderful cuddles as well. You would think that going through an experience like this would make you want to live closer to home and family (with ours being across the country.) We’ve been here for years now but I constantly think about how this experience has really made this finally feel like home because it’s shown us how many people care about us in our new home.

 

Fuzzy lifts his head!

The internet doesn’t seem to work today in the hospital but I really want to share this so I’m trying to blog from my phone. Hope this works!

Foster is now 4 and a half months old. He lost many abilities at around 2 and a half to 3 months of age. Including smiling, crying and lifting his head. ย Our doctors said that the loss of these abilities that he had previously shown, along with his struggles with secretions, breathing and protecting his airway, were all part of the progression of his neurological disease. Although nobody knows what that disease is as all his tests continue to come back perfectly normal.

Anyway, I know a lot of you have been following Foster’s progression very closely so I really wanted to share this video of Foster lifting his head this morning! He hasn’t been able to do this in well over a month now! Also want to say that Foster hasn’t had a seizure in almost 30 hours. Which is crazy, in the last few days he’s typically had around 8 or 9 seizures already by 9:00am. Typically they start around 4:00 or 5:00am and by 9:00am he’s had about 8.

Hopefully one day we can see Fuzzy’s cute smile again ๐Ÿ™‚

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March 17th…

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After spending 9 weeks sleeping in the children’s hospital (between our 5 weeks in November/December and the last 4 weeks) I finally realized that sleeping would be so much better with pillows and blankets from home! The hospitals idea of a cozy bed and my idea of a cozy bed are vastly different! ย But at least they provide us with a parent bed, in the ICU they give you a recliner. Luckily we’ve only had a handful of nights in ICU – another positive.

Most of the nurses here are my age and I’ve gotten to know them all pretty well so they are actually great company. And since Foster requires a little extra attention he typically has extra nursing care so the nurses are around a lot for chatting. And many of the nurses have taken to calling Foster, Fuzzy.

We’re gradually learning about a lot of resources that are available to us which makes life a little bit easier. For example, Foster has been invited to utilize the Rotary Flames House. The Flames house is on the children’s hospital grounds and is staffed 24/7 with nurses and doctors. We’re given 30 nights/year of respite care so that Brett and I can have a break from being primary care givers and re-charge. We can sign Foster in for a minimum of 24 hours and a maximum of 14 consecutive days. This respite care is probably the most valuable service to us because we don’t have the option of leaving Foster with a caregiver (even a Grandparent) for even an hour. Daily care for Foster currently includes safety during seizures, administering daily medications, administering rescue medications, suctioning of secretions, administering oxygen, inserting his feeding tube as needed, checking/testing for correct placement of tube, working the pump or gravity feed, monitoring the kitogenic diet, testing blood ketones, blood urine and blood glucose (each one twice daily, spread throughout the whole day) and keeping accurate records of seizure activity, ketone and glucose levels, medication changes etc. So as you can see, the 14 year old girl next door that offered to babysit Clay for a great rate….not an option anymore. I think 14 consecutive days would be too difficult but we have signed Foster up for a couple of weekends already at the Flames house. He’ll be there for our friends Kara and Jordan’s wedding weekend in October and also for our friends Jack and Katie’s wedding weekend in the summer. Both require travelling and I wouldn’t even know how to begin travelling with Foster and all of the equipment he is hooked up to. Besides, it’s much safer for him to be under the care of medical professionals and on the hospital grounds if anything should happen while we’re away. It will be very sad to take a family trip to Ontario without one member of our family ๐Ÿ˜ฆ

Unfortunately, Foster has to be an out patient to utilize the Flames house and since he’s currently and in-patient and an in-patient requires a 24/7 parent at bedside, we wont be able to utilize the house in time for Linda and Jim’s wedding in the Dominican next week. Brett and Clay will still go though, Clay has a duty, he’s a ring bearer ๐Ÿ™‚

Here are some photos from the last couple of weeks:

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Back to positive thoughts though, we recently learned that the cost of unit 3 (Foster’s unit) is $3000/night. ย That’s crazy, so thank you to everyone that pays taxes because we haven’t seen a single bill for all of our 9 weeks here under the care of multiple specialists! The Kitocal formula (you’ll learn about that later) is also ridiculously expensive and has to be ordered from the U.S. and we’re also provided funding for that through the FSCD program which we have also just learnt about. So we’re happy to be Canadian.

We also have had both Grandmas visit to help out which has been beyond helpful. And on two occasions, Brett and I even got to go for a date! We had one Grandma at home with Clay and one Grandma sitting at the bedside at the hospital and Brett and I got to have a really nice dinner out and go to a movie all in the same week. We saw 12 Years a Slave, sad, good but quite sad…if you’re thinking about going.

Here’s a photo from one of our date nights, we ended up wandering through McMahon Stadium after dinner.

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No real progress has been made for Foster, still living in the hospital, still on a feeding tube, still having difficulties breathing, still on oxygen, still no talk of discharge.

Brett and I have completed the teaching to be able to insert his feeding tube, check for placement and operate the pump or gravity feed because it’s assumed that when we do go home we would be going home with a feeding tube and potentially oxygen and suctioning.

Foster has also been on the kitogenic diet for a week now. It’s a bit of work, I have to test his blood ketones, blood glucose and urine ketones twice every day to ensure that his levels are exactly where they need to be for seizure control. Having levels to low wont provide any seizure control and having levels to high will either be a stress on his body and cause more seizures or he’ll show signs of excess ketosis and feel sick and other side effects. It’s not too difficult right now because it just means a special ketocal formula. However every single carbohydrate has to be accounted for including those in baby wipes, soap, lotions etc. If he is to stay on the diet it will become more time consuming as he gets older and starts to eat more foods. He’s on a 4:1 ratio which means 4 grams of fat to every 1 gram of carbs and proteins combined. So every meal has to be measured out. For example, if I was to make cooked pureed carrots (baby food) on a 4:1 ration, 1 cooked, drained carrot has 1 gram of carbohydrates, 0g fat, 0g proteins. So for every 1 cooked carrot I would have to stir in 4 grams of fat which could be half a tbsp of unsalted butter which has 0g carbs, 0g protein and 6g of fat….so it would be a little less then a tablespoon. We had to buy a kitchen scale accurate to 1 gram. We also needed to get an infant scale and we have to send Foster’s daily blood and urine ketones, blood glucose, seizure record and daily weights every week to the neurologists. But since we’re in the hospital they just come up to the room and ask for his level for now.

The most exciting part of Fosters day, watching his mobile:

 

We couldn’t miss his 4 month photos…except we couldn’t move him much cause his cords weren’t long enough ๐Ÿ™‚

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So Foster’s average now is around 9 seizures a day. Like full body seizures, although he’s also started doing unnatural blinking episodes that the neuros said could potentially be seizures as well but smaller, quicker ones. Although we can’t confirm that without another EEG so in the meantime we don’t really count those as seizures. I don’t think he’s had a day with less then 7 seizures in a couple weeks and the most he’s had in one day was 18 seizures about a week and a half ago.

However, since starting the diet, all but one seizure have been under 5 minutes. In fact most of his seizures are 3 minutes now, whereas before most of his seizures were hitting at least the 5 minute mark and then requiring rescue meds. So in the last week, with all but one seizure he hasn’t needed rescue meds. Which is awesome. However, the one seizure that was over 5 minutes was 26 and a half minutes. And didn’t respond to rescue meds that were administered at 5 minutes, 10 minutes or 15 minutes. Then finally responded to the final load does of rescue meds through IV. Which wasn’t awesome. And the poor nurses had to try to put an IV in his teeny tiny vein while he was actively in a seizure because his prior IV had fallen out 20 minutes before this seizure started.

Overall though I think Foster’s doing better this week then he was a couple weeks ago. His seizures a couple weeks ago were accompanied by really low desats. His oxygen at one point desaturated to as low as 11% and his alertness was almost non-existent. He was having a lot of troubles breathing, clearing and protecting his airway, a lot of his medications were causing excess secretions and drowsiness and there was at one point a lot of talk about a breathing tube and going back to ICU. ย He seems much more stable this week with the exception of that one long seizure on Saturday.

He’s still not getting enough time between seizures for his brain to recover and develop as a normal brain would. But he is getting longer stretches of alertness. The plan is to move him from a continuous feed to a bolus feed later this week and then maybe next week have a swallow test done to see if we can attempt any oral feeds again. In the meantime it’s really important for him to have his soother as often as possible so that he doesn’t lose his sucking instinct, which can happen when a baby isn’t using it. However even if oral feeds are successful, he will still need his feeding tube as it’s expected that we wont gain enough seizure control to avoid periods of sever drowsiness in postictal states and during those periods he can go hours without waking to feed. We’ll also be making the first attempt to wean off of the continuous oxygen in the near future to see if he still needs it all the time, hopefully he’ll only require it during seizures.

But since life continues outside of the hospital as well, I’ve started planning Clayman’s birthday party which is fun and I also booked a couple of family photo sessions for the summer so there’s a couple fun things to look forward to!

Here’s Clayman and his buddy Liam from our pancake breakfast play date a couple weekend’s ago (and my lovely friend Lindsay in the background.) Liam really likes the peanut butter ๐Ÿ™‚

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My friend Jade watched Clay for a day the other week so that Linda could come to the hospital to see Foster. She sent me this cute video of Clay and his little friend Archer doing crafts at her house ๐Ÿ™‚

 

And Clay with his bedhead after his nap at Jade’s house:

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Sorry again that this is so long but I assume if you’re reading it then that’s because you want to know what’s going on. I really don’t want to be the person that only has depressing hospital stuff to talk about but I’m putting it all on here because I really don’t have the energy to repeat this conversation 20 times to 20 different people. If that makes sense, not to be anti-social but sometimes I just can’t talk about it over and over and over again or answer questions. I just can’t. And if it is a hard day, and some days are, I’d really rather not be asked a lot of questions and just talk about what’s going on in your life if we could. And I think that Brett feels the same way. Because there’s a tough situation, that’s emotionally draining and then it passes but every time someone wants an update it’s like your forced to stay in that spot. So we really really appreciate everyone that’s taking the time to stay updated on here because it really does allow us to progress and be present and not relive a bad moment over and over again.

And before I go, here’s a couple more photos that I found of the boys together from the morning before we came back to the hospital:

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February 27th…

Hi everyone,

We’ve been in the hospital again since the family day long weekend, pretty much right after I posted the last post on here. I’ve been hesitant to post anything since because I haven’t been feeling like we’ve been getting any good news but I feel bad that nobody is getting any updates. Sounds like we’ll still be here for a few more weeks. I’ll try to make the Foster update quick and then we can move onto fun and cute photos and videos ๐Ÿ™‚

So Foster was asked to come back to the hospital for a few reasons. He was continuing to have daily seizures, long seizures and requiring rescue medications daily and sometimes multiple times daily. So they wanted to have him do another 24 hour EEG to see if his seizures had changed at all and then if they had, maybe that would steer us in a different direction for medications. The seizures have not changed from his EEG scan and so we have not been sent in a different direction with medications. We’ve now added in additional daily medications and have been told by our neurology team that it is very unlikely at this point, given the number of medications that he’s on and the number of medications that he’s been on in the past that have not helped, that we will be able to gain control of his seizures through medication. Not that he will be taken off of medications or that they will stop trying new medications but just and FYI that they don’t anticipate that anything will help much at this point. They can also confirm that Foster has suffered brain delays as a result of the multiple long seizures that he’s had, though they aren’t able to say at this point what level they project him to function at. They typically need to plot two points on a chart to be able to see where he may function in the future and at this point those points are both side by side. He’s also suffering with what they call a failure to thrive, given that he has not grown since he was two months old and at four months (next week) is actually smaller then he was at two months. He’s been on a monitored high calorie diet, set up by a dietitian, to try to increase his growth and has so far still not been growing well. The pediatrics team and neurology team have contributed his lack of growth to a couple of things, one being that he jitters all day long as part of his underlying neurological disorder and the second being that he had developed stridor making him work really hard to breath. Then additionally, he’s been having an increase in seizure activity. So all combined, he’s just burning way more calories then he can possibly intake at this point. He’s also been very sleepy from medications and/or in a postictal state following seizures that has prevented him from eating orally so he’s back on a feeding tube. We’re told to plan on being in hospital for a few more weeks, of course that will all depend on Foster and how he’s doing. He had a surgery done on Tuesday to help open his airway. The idea behind that was that he wouldn’t have to work as hard to breath. Not that it will be the answer to all of his growth problems but hopefully that will eliminate one of the contributing factors. Hard to say at this point if the surgery made it any easier for him to breath because of course things are still swollen and can worsen slightly in the meantime.

From a seizure perspective, the next step for Foster will be starting him on a ketogenic diet which has some good results helping people with forms of epilepsy that are resistant to medications. My understanding is that it’s a high fat, low carbohydrate, moderate protein diet that manipulates the body into a state of ketosis where the body is burning fat instead of carbohydrates. This will replace the glucose in his brain with ketone bodies and for whatever reason this process can sometimes stop the brain from seizing or stop if from seizing as often. He would be working with the neurology dietitian closely to ensure that he’s getting the nutrition that he requires for growth while on this diet. And if he has success on the diet he would be on it indefinitely.

But here’s a cute little video of my jitter bug, jittering away to the music ๐Ÿ™‚

So, I brought Clay over to play with his little buddy Liam on my way into the hospital and they sent me the cutest videos of Clay and Liam playing together! I had to share….I just think it’s the cutest thing when these little guys play together.

How adorable are these little dudes!

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Then the next day Brett was at the grocery store with Clay and they ran into Nada and Liam there. Apparently both little boys (Clay and Liam) were having meltdowns and were really happy to see eachother. Nada said that Liam was really upset and then she heard him saying “Day…Day” which is how he says Clay and she looks up and Liam was walking over to Clay and grabbed his hand. Then they just stood there holding hands hahah. Brett said afterward when Nada and Liam were walking away that Liam tried to pull Clay with them. Too cute.

Clay’s been going to the daycare at Brett’s office and taking the train into downtown with him while I’ve been in the hospital with Foster. Sounds like he was adjusting pretty well to daycare and having a pretty good time by the end of the first week.

Okay now for random pictures taken on my phone over the past few weeks!

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Me and Fuzzy hanging out in our hospital room.

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Tummy time for Foster…gotta work on that neck strength ๐Ÿ™‚

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The nurse brought Foster a swing! Way better then the hospital crib.

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EEG day….I always think he looks soooo cute having an EEG haha. It’s heavy for him though and difficult to move him around with lots of stuff attached to him.

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The boys in their team Canada gear.

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Clayman…..he’s a big fan of showing off his belly!

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Cuddles with Daddy.

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The best way to eat dinner.

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Mommy’s night at home with Clay (I get another one coming up this weekend!)

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Not so sure about yogurt…

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Cute boys.

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New hat, sooo cute! Thanks Gran ๐Ÿ™‚

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The the last one I think.

February 17th…

Hi Everyone!

It’s Family Day long weekend here which means that Brett had today off work, really nice actually. I’ve been so used to seeing him for a full week at a time when he was doing his shift work. Since he’s been back to working Monday to Friday, it seems like we see him a little less because he goes to bed pretty early to get up early for work. Anyway, definitely makes us appreciate the long weekends!

Also happened to be Valentines weekend and I received some lovely flowers. Brett and I have started doing a date night every Friday (we have pre-determined dates for the year) and so Valentines day fell on our “Chinese Food and movie of my pick” night. The date card specified a romantic comedy and since Brett would NEVER pick a rom-com, that made it my movie choice ๐Ÿ™‚

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Aside from date night, we haven’t done much this weekend. Clay had an appointment this morning to get his first real haircut. I say real because he’s had numerous cuts from myself and Brett but what do we know about cutting a little boy’s hair. Since it was his first time at the hair dressers, I thought we needed some photo documentation. Our family photo albums are just riveting with this type of content.

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And the finished product…

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Notice Clay got the pink and purple Barbie Jeep for his hair cut….he’s too young to complain, probably why they put him in it. Anyway, now Clay looks very employable.

I tried to take some updated pictures of cute little Foster today too. He’s a tricky one to get a good picture of, he’s actually way more adorable then he appears in photos haha. But the main thing is that he gets upset when you take his soother away, so it’s really hard to get a good picture of him without a big plastic soother in his mouth.

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February 6th… It’s a long one.

Just looking at the header on this site and realized a need to get some updated pictures. Not only do we have an adorable fourth family member but Clay was such a baby in those pictures and he’s a little boy now. It’s actually crazy how quickly that changed. Like three months ago, Clay was still a baby for sure and then now all of a sudden he’s not, he’s a toddler with a neck (this is a big deal to me because it’s really the defining feature here that makes him look less babyish) and he wants to wear his big winter boots all day long in the house even while climbing on all the furniture. He’s a handful all of a sudden with lots of little meltdowns. I’m sure it’s just his age but at the same time I’m really starting to see his personality and pin point little things about him. For example, he doesn’t want help at all, he wants to do it himself, whatever it is. And if he’s done it successfully before he will remember that and if for some reason he can’t do it again the next time it’s a meltdown and don’t attempt to help him. The issue is that he knows he can do it himself and he’s frustrated that it’s not working. Like the other day, he was wearing his big winter boots in the house (which he puts on himself, so do not offer to do it for him because that’s trouble!) and with these boots, he could reach all of the light switches in the house. He had an awesome time running around the house turning on and off every light switch. This is especially fun when Mom is trying to put on make-up and Clay turns off the bathroom light, then I immediately turn on the bathroom light, followed by Clay (thinking this is a great game) laughing and turning off the bathroom light. This is how I get ready every morning, in flashing lights. Back to my story… ย So the next day, Clay wants to run around and play with the light switches again, only this time he doesn’t have his boots on and he can’t reach the switches. Well this is a huge problem because he doesn’t understand why he can’t reach the top of the switch. Which leads to a meltdown from frustration, followed by me trying to show him that with his boots on he can reach. Problem number two…I tried to put his boots on for him HUGE Mistake!

Okay so again, back to my story about how his little (or big) personality is starting to shine through. He likes to do things on his own, he’s very determined and doesn’t want help. Point two, he wants to finish what he started. So this morning, Clay is playing with the closet doors while I’m changing Foster. Now, this is problem number 1 here really, I shouldn’t have let him play with these doors to begin with and normally they are baby locked. So he’s playing with the doors and they are the bifold doors so they bend in the middle. He’s opening and closing, opening and closing and then he goes to push them closed again and gets a part of his finger pinched in the fold as he pushes them shut. So he cries and gets a little blood blister, clearly painful. Comes over to me for a hug while crying and then as soon as he’s finished crying, gets back up and goes over to finish the job because the doors still weren’t closed. This time he’s a little more careful with where he places his hands. And he also seems to enjoy music. he sings to himself most of the day during whatever he’s doing….his favourite song is the Alphabet, not that he knows the letters but he makes up gibberish that he sings to the tune of the alphabet…although he has the “L M N O P” part down pretty good because that part is catchy. My friend Heather was watching him the other day and she texted me saying “Clay has a really good musical ear! He can repeat melodies I sing right on key!” ย Oh and I have a cute video she sent me from that day of Clay and her little boy Reid chasing each other around….I’ll try to add that in here in a sec.

 

So he’s adorable and my other adorable little man has had a bit of a rough week. Foster’s epilepsy is proving to be difficult to control…well we’ve been told this from the beginning but it isn’t getting any better. He’s onto his 5th cocktail of medications now which is currently a combination of three anticonvulsants that I give him three times a day. Well actually he gets 8:00am, 2:00pm, 5:00pm and 8:00pm right now but that’s changing again soon. His medications and doses change so frequently it’s crazy. Last week he was on a schedule where one of the two meds that he was getting a combination of was changing every three days for 9 days and the other one was changing going up and now it’s going down. I mean this baby can never be left with a sitter or a day care provider, what he needs is a nurse. But this is my job so I’m doing my best to try and stay on top of his daily medication changes. The problem is that with everything that we try we never seem to get control of his seizures and so we’re always making changes and trying something new. We did think we had a good thing going with this last combination which had him down to about 1 or 2 seizures a day, but that didn’t last. Last week he was having days with 4 seizures a day and the even bigger issue was that every seizure was longer which means I have to administer his rescue meds as well. If you’re giving his rescue meds regularly (the initial one is Midazolam) he can become immune to it. And I’m not sure if that might be the case because last week he had three seizures that became status epilepticus which is basically a prolonged seizure that’s difficult to stop and it’s just not good in general, these seizures can go on for hours and cause permanent damage. So he had a 14 minute seizure, a 40 minute seizure and a 27 minute seizure and these seizures were not able to be stopped when I administered his rescue meds (actually one of them did stop with rescue meds, the first one) and the ambulance ended up taking him into hospital multiple times last week. So now we have to switch up his rescue meds too because the problem with these status epilepticus seizures is that the longer they go on for the harder they become to stop. So now, I have to go into the hospital to be trained on administering two injections which I’ll have to give him in an emergency at the 10 minute mark, assuming the Midaz doesn’t stop the seizure when I administer that at the 5 minute mark.

It’s funny because I thought I would work in the wedding industry but apparently God was like “Weddings? No, you’re going to be a nurse, only without a paycheck or a break!” I definitely feel like a nurse these days, only with shaky hands. Like today, I had a dentist appointment at 11:30, so I have both the boys in the back seat all strapped into their car seats when Foster starts having a seizure on the highway. So I need to jump out of the car immediately for two reason. One being that all of his seizures are right around the 5 minute mark if not longer, so I need to be timing it as soon as it starts so that I know when to start drawing the Midaz out of the vial. And two, because Foster vomits through his seizures so I need to really quickly get him out of his car seat and onto his side so that he doesn’t choke. Okay, so it’s a highway, with no shoulder, so I pretty much just stop, put my 4-ways on and hop out. And I’m standing beside my car, with cars zooming by me, in -25 degree weather, trying to draw the Midaz into the syringe but my hands are shaking so much from being freezing cold. God help me when I have to start giving him these injections. At least right now with the Midaz, I use the needle only to draw out the medication but then I change the top to administer it intranasally.

Anyway, we’re going through another change in medications right now because clearly we don’t have great control yet. So the Neurologists said this new one will take about a couple of weeks to build up in his system and we can probably expect the same type of seizure activity until then….assuming we have luck with this new mediation. Fingers crossed.

But while I’m on this subject, my girlfriends particularly Jileen, Lindsay, Hilary, Nada and Heather are amazing. They have been a HUGE support system for me through all of this and are always ready to help with no notice at all. Like in that video of Clay and Reid running around, Clay is in his pajamas, at Heather’s house because I had to follow the ambulance to the Hospital with Foster and needed someone to meet me at the hospital to take Clay. I had nothing for Clay, no clothes, diapers, snacks, lunch, nothing. And who shows up to take Clay for the day? Heather, who’s at home with her son Reid (Clay’s age) and her TWO WEEK OLD daughter! I mean, your hands are definitely full enough without adding my crazy son into the mix. And then Jileen shows up at Foster’s Hospital room after work pretending to be my sister, with a thoughtful care package including make-up, a toothbrush, snacks and her Ipad loaded up with TV shows for me. Stays until after midnight to keep me company and then takes the next day off work and is back at the hospital with me. And speaking of care packages, these girls (all of them) brought us the craziest care package when we had our long extended stay at the hospital. I’m pretty sure they bought the grocery store and every home decorating magazine in it. I think the basket was about 80 lbs. And I know that all of these girls genuinely love Clay, they’ve known him since he was just a couple months old and have watched him turn into the little boy he is now. And I also want to acknowledge that I know how much my girlfriends and family back in Ontario and elsewhere wish that they could be closer and are feeling a little helpless, I just want to reassure everyone that we do have this great support system out here…but of course love your phone calls as well ๐Ÿ™‚ And the girls listed above are only a few of many friends offering their support, we are a lucky little family. Especially given that only a few short years ago we arrived here knowing nobody.

Also, we’ve gotten to know our fire department in the last little while with their frequent visits to our house! They’ve even offered to babysit Clayman twice when I’ve been heading off in the ambulance with Foster ๐Ÿ™‚ The fire department are always the first to respond when I call 911 because they are just a block away from my house. The ambulance has to come from either Calgary or Cochrane so they’re usually 30 minutes or so.

Auntie Julia has also decided to start volunteering at the fire hall and so Clay got to go visit her recently and see all the big trucks which was pretty cool! She’s back at work in Afghanistan again now though until April. She has this neat app on her phone that the fire fighters use so every time there’s a 911 call it shows up and I think she can even listen in on the radio convos regarding the 911 call. So she can probably see, all the way from Afghanistan, every time I call 911…I’m sure that will be a little unsettling…

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Okay, now I’ll just take a minute to brag about my Husband. Seriously though, how nice is this. He took the time to go out and buy pretty craft papers, fold up all these little envelopes and write me little notes about all the reasons that he loves me ๐Ÿ™‚ And he put them in a cute mason jar for me. That’s probably the most thoughtful thing I’ve ever received! All that effort after 11 years ๐Ÿ™‚

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Okay that’s it! Sorry it’s so long, I should do shorter ones more frequently but my life is busy ๐Ÿ™‚

xoxo

January 19th…

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Foster has a seizure disorder and a neurological disorder (separate disorders) and most of the time, I allow worry about what the future holds with these disorders, consume my mind.

Today, after Clayton went down for his afternoon nap, I sat on the couch and cuddled with Foster. I love this, his head is always so warm and his hair is so soft against my cheek. I could sit like this all day. And as I’m cuddling with Foster, I’m realizing that this is quite likely the easiest and safest time with him. Because he’s not mobile yet and he’s not expected to be mobile yet. This might be the only time in his life when it’s not obvious that milestones haven’t been met or that Foster isn’t an absolutely healthy baby boy. Right now, when Foster has a seizure, he’s either sleeping in my arms or he’s already laying down safely in his bed. I don’t have to worry about him having a seizure in a pool while swimming with friends. I don’t have to worry about him having a seizure while standing or running and injuring himself as he falls to the ground. But I will have to. I can tell myself that this is possibly the best time for us and try to convince myself to enjoy this time and not borrow worry from the future but it’s hard to actually do it. Today though, I did. ย I cuddled with my sweet, precious little baby and the only thoughts I had were about how nice he felt in my arms. Warm and soft with his big round eyes that I love so much looking up at me.

He is absolutely adorable, beyond adorable. I don’t know what the future holds for him but today I really, really enjoyed my sweet, teeny, tiny, baby. And I can only hope that I’ll be able to enjoy him as much as is absolutely possible and leave all the worrying for when it’s needed.

Neurological issues aside, he really is an easy baby. Thank God right? I couldn’t handle seizures and colic. When Clayton was two months old, he needed to be held all the time. And not just held but held while walking around. Sitting was not cool with him Clayton. We had so many things for Clay like a baby swing, a vibrating chair etc. that he would never use. He wouldn’t sit in the stroller during strollercize and he’d wake up the second I tried to lay him down for a nap. Clay was a great baby too, this stage didn’t last beyond 4 months but it’s still pretty clear in my mind. Foster LOVES the baby swing and the vibrating chair. He’ll sleep through our entire strollercize class and he never cries. Except after a seizure but that’s a pretty good reason to cry. He also sleeps well through the night. Even if he’s not sleepy at night, he’ll just lay there in his bassinet, suck on his soother (another item Clay wanted nothing to do with) and look around until he falls asleep. ย 9 out of 10 nights he’ll have a seizure in the middle of the night. Sometimes he has a seizure at midnight, sometimes he doesn’t have one until 3:00am or even 6:30am and apart from waking up to a seizure, he’ll sleep all night long. He really needs his neurological disorders because without them he would actually be perfect haha. Everyone has their issues right.

But I am really enjoying this stage with him. When he was born at only 4 lbs 11 oz. I remember feeling uncomfortable because he was too small and fragile. Plus newborn babies do too many completely normal newborn things that resemble seizure activity. Like for example, they aren’t great at controlling their eye movements. And that’s normal but when your newborn is also having a dozen or more epileptic seizures daily, it’s a bit too much. I remember looking at him literally every time he moved thinking “is it a seizure!?!?” and sometimes it was but sometimes it was just him being a newborn. Now though, at 2 and a half months old, he’s still little (9 lbs 2 oz, 3rd percentile but he’s growing well) and I’m able to distinguish easily when a seizure is happening, it’s very obvious. So I feel like we’re at the point now where we’re a little less stressed and he’s still so cute and little. It’s like this is the newborn stage that I sort of feel like we missed out on when he was first born.

Here’s a couple cute pics of Fuzzy, our nickname for him, I guess it came from Fozzy…

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