What life looks like for us

In a more recent post explaining what Hope was diagnosed with, I had mentioned that when we first were told of Hope’s medical needs, I was desperate to find people who shared a similar story. I would search people’s blogs trying to find a glimmer of hope. How did people live their lives? Now that we are 9 months into this journey with Hope, I hope that others can find comfort in seeing what we focus on during a typical day – and that there can still be joy in the mess of a life you never expected.

What’s the biggest thing you deal with?

Hope has brain abnormalities, scoliosis, low muscle tone and eye abnormalities – but dang, is she ever cute. Despite all the challenges those things bring, seizures are our biggest issue. When Hope was 3 days old, she had her first seizure. She was treated with medication, and we didn’t see any other seizure activity for a couple of weeks. She was later diagnosed with a specific type of seizure called infantile spasms. Infantile spasms put your development on hold because your brain is constantly active. Her EEG always looks the same. It shows a pattern called “hypsarrhythmia” – the Latin word for chaos.

There are 2 mainline treatments for infantile spasms, and Hope failed both of them. The Keto diet is what we’ve just started to try as a result of these failed attempts.

Infantile spasms are repetitive movements that happen in clusters. Often, they can be missed. They can be as simple as an eye roll or twitch – something that seems so small, but can be so detrimental. For Hope, she will often do 2 different movements, and do them in clusters about 10 – 15 times a day. She will either yelp very loudly while twisting to the side, or her eye will roll, lips will smack and her body with slightly twitch, while crying. These two movements happen at any time of day, and any type of stress to the body can increase them – like a fever, sickness – even constipation!

We record each seizure type and duration in a chart, so that we can compare our days with the team of neurologists at Sick Kids.

While Hope is having a seizure, we comfort her. We usually speak softly to her, sing or pray while holding her.

Syringes, pill crushers and medicine – oh my!

I have become that person who has a favourite syringe. A big portion of our day is consumed with getting Hope’s many medicines and vitamins ready. That involves crushing pills, adding water, and administering each one through her G-tube. Hope is on 4 anti seizure meds, a reflux medication and CBD oil – she gets these twice a day. She is also on 5 supplements because of the lack of vitamins from the Keto diet. So, as you can imagine, that’s a lot of syringes to wash, dry and assemble each day. When we first came home from the hospital she was on 1 medication, once a day – that is crazy to me. Crazy because a couple of times I was close to a complete breakdown because I was afraid I’d forget to give it to her, or that she’d spit it out. We’d go out and bring her medicine with her, and I’d double check her bag 20 times before we left to make sure we had it. I’m happy to say that although we are still insanely organized, our stress level has gone way down. We can get those meds and vitamins ready in no time now, and have them all packed and ready to go when we go out.

Putting each syringe back together and away once they dry makes my heart happy – see, you can find joy in anything!

Tubie Life

I knew that many girls with Aicardi Syndrome needed G-tubes. Knowing that Hope may need one eventually would keep me up at night. We fought against it like nothing else, but it came down to her silently aspirating a little bit. In order to start the Keto diet to help with her seizures, we had to agree to a G-tube. Long story short, and many tears later…guys, the G-tube is…

not. that. bad.

Actually, it’s super simple and has made our life so much easier – I just didn’t realize at the time how stressful feeding time was. Hope has always had the ability to swallow, but depending on the medication and dosage she was on, many times she struggled to stay awake while she ate. Add that to long days and long drives to appointments and I was always trying to feed her. Now, no matter what, wherever she is, she can get her feeds, and with Keto, her feeds are her medicine basically. The G-tube allows her to get every last drop. Yes it’s weird and unnatural, but hey – she needs it and it’s available, so we are thankful for this new normal.

“You’re fat, but you’re the GOOD fat” – Avocado affirmation

Because Hope hasn’t reached seizure freedom with her medication, we are now trying the Keto diet. A diet that has proven to be effective for many people with epilepsy – so we are hoping it works for Hope. She’s not on bacon and avocados just yet 😉 but every evening we make a batch of her keto formula that (right now) consists of Keto-Cal (a high oil/fat formula), microlipids (fat), protein powder and water. We use a scale to measure everything, blend it up, and pour it into 5 bottles for her 5 feeds for the day. Each feed takes 2 hours to run through her G-tube, and she feeds every 4 hours with a break at night. Along with her feeds, we are consistently checking her urine to see what level of Ketosis she is in, and checking her blood sugar to make sure everything stays stable.

Exercise? I thought you said “extra fries”

Exercise, and different therapies, are a big part of Hopey’s day. I think the poor thing pretends to sleep some days because she knows the second she gets up, we’re getting started. It is as simple as stretches all over her body, tummy time, sitting upright in a chair and constantly moving positions. Hope is hypotonic, which is a fancy word for having low muscle tone – she’s pretty floppy. She needs to work extra hard to do simple things that other kids could do for her age – like bring her hands together when she’s laying down. So we are always stretching, finding new positions and working on the same repetitive movements over and over again to build her tone and help her brain make new connections. This by far is my favourite part of the day – even though it’s all throughout the day. I will admit though, it can be discouraging because you work so hard and often see the tiniest amount of progress – like so tiny – like we squeal when she stretches and lifts her legs at the same time.

But it’s ok – it reminds me over and over again that we can’t take anything for granted, and that there is so much joy found in the littlest of things.

I know I’ve mentioned a lot of things – and there is still so much more. There are endless cuddles, bath time, stories, poo-nami’s and other therapies. There is laughter and tears. But, if you are reading this and you just received that dreaded diagnosis, please please please know this one thing:

Your baby is a gift.

Every single life is precious – no matter what it may look like. Yes, it’s going to be so hard – but you can do it. On those difficult days, we remind ourselves that God created Hope, fearfully and wonderfully. That He chose US to be her parents. That He is leading us and guiding us every step of the way, and we just need to do the best we can to take care of her. That even though there is sadness, there is honestly and without a doubt, so much joy. It is a privilege to be her parents.

So embrace those moments of sadness – of questioning why this is happening to you. These moments are necessary and your feelings are valid. Cry, vent, do what you need to do. But please, don’t spend too much time there. I still struggle with this, and will probably continue to do so for a while. But once you accept the fact that this is your life, and throw away the expectations you did have, it does become easier day by day.

And remember, it’s all going to be ok.

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A life of purpose

Yesterday, Hope turned a month old, and I couldn’t help but think and reflect on where we were a month ago. I often think about my “birth story” and feel a mix of emotions. It was a long and drawn out labour. I was admitted to the hospital on Friday, and I didn’t have Hope until Sunday evening. I can relive a mix of emotions from being relieved and excited when we finally met Hope after months of uncertainty, and cringing while remembering the pain – both physical and mental.

I will spare you the nitty gritty details of Hope’s birth, but there is one part of our story that I think about almost every day and have felt the need to share. It was my interaction with one of the many nurses I met over that long weekend. With being in the hospital all weekend, I had met quite a few nurses – some that were wonderful, and some that would talk your ear off while you’re in pain. You know the ones. But there was this one – one that I will never forget. She was the one that came in to tell me it was “time” and she rolled me into the OR to deliver. She was the one that kept telling me to open my eyes when I would push because it would make it easier (HA!), and she was the one that roughly tried to give me an iv after the birth. But those are memories that will eventually fade and probably not really be a thought in my mind in years to come.

This nurse rolled me back into my room and congratulated me on the delivery. At this point, I hadn’t really seen Hope. At the moment I delivered her, the doctors let me see her for a second and then whisked her away to the resuscitation room. They were cleaning her up and said they would bring her into my room before bringing her upstairs to the NICU for the night. As you can imagine, I was exhausted at this point, and feeling extremely sad that I didn’t get to have my baby there with me – that I didn’t get to hold her right away. It was just me, Lawren and the nurse in my room.

After congratulating me, the nurse said something to me that I would never forget. She said to me that Hope was beautiful and was normal looking. I thought it was weird that she said Hope was normal looking, but she mentioned that being a high risk hospital they’ve seen it all. She then said to us… “good for you for carrying her to term. I couldn’t have done it and would have ended the pregnancy.” She proceeded to tell us that she has 4 children, and knowing that she’d have another child that would have special needs would be too much for her family.

I sat there, shocked. I literally gave birth 5 minutes ago, and THAT is what she said to us? I calmly responded and told her that we believe that God is the only one who gives and takes life away – that we have no right to make those decisions. She awkwardly agreed with me, but again told me how hard it would be for her and her family.

And the thing is, even without having 4 children, I could understand. I could understand that it would be hard and most likely “inconvenient” for anyone really. I had those thoughts the second I was told that Hope would face many challenges. I couldn’t believe that I was one of those women who would be asked if she wanted to interrupt her pregnancy – never did I imagine that I’d ever face a pregnancy like I did. I thought over and over again about my midwife asking me at my 12 week appointment if I wanted to do genetic testing, and responding with “no, regardless of what happens we are keeping the baby”. As much as I believed what I said 100%, I underestimated the weight that those words carried. We were all of a sudden faced with a situation that no one would ever want, and all of a sudden I found myself questioning whether it was kind or cruel to bring a child into the world that would face challenges, and in my mind, have to suffer. I surprised myself that those were now thoughts that consumed me.

All this to say, the Lord used this situation to not only renew and refresh in me the value of life, but also to grow in compassion for those who were faced with those same difficult choices. You can believe and know deep down in your core that God is the creator and sustainer of life – that He is the only one to give and take away, but we can never know the depth of someone’s pain unless we’ve been faced with a similar situation – and even still, every situation is different.

All that to say, Lawren and I believe that no matter what Hope is faced with, the Lord created her fearfully and wonderfully, and He has a great purpose for her. He will be the One to have His hand on her, sustaining her day after day. That goes for any child – the moment they are conceived, there is life and there is great purpose. Whether that child comes out healthy with everything working “the way it should” or is faced with disabilities. I believe that He will (and already has!) glorify Himself in Hope’s little life. She’s already impacted so many people and it’s been amazing to be a part of that. Early on when we received the news of her diagnosis and my prayers would be lots of “why is this happening!?” the Lord continually led me to the passage in John about the blind man. In John chapter 9 people are asking Jesus what this man did, or what his parents did in order for him to be born blind.

Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”- John 9:3

I may never know exactly why God is allowing this in our lives, but what I do know is that He will use whatever means He chooses to show how great and powerful He is – even if that means using a little girl named Hope.

When I remind myself that we are His vessels created to honour and glorify Him, all of a sudden this situation doesn’t sting as bad.

And speaking of celebrating LIFE, here is Hope at 1 month old, simply perfect ❤️ (that first picture 😂)

The S word

Seizures.

Never have I hated something so much. The thing is, we knew Hope would have them, but nothing could have prepared me. During one of our many Mount Sinai clinic visits (while I was pregnant) the doctors told us that Hope’s brain was wavy around the edges, not smooth like it should be. As a result, she was at a high risk for seizures. Knowing she would have seizures consumed my thoughts more than any of her other “problems” they listed. We prayed and prayed for healing, and if not healing, then the right medication to control them; and we prayed that if she would have them for them to start in the hospital, if anything, so we’d kind of know what to do. They did.

3 days after she was born we arrived in the NICU in the morning to be told that Hope had already had 2 seizures that morning, and my heart sank. We saw her third one, and the rest that she had that day, and honestly, I felt ok. All four of her limbs would shake and her mouth would tighten up, and 30 seconds later it was all done. Lawren was able to record her having a seizure and because of that, the doctors prescribed her on anti – seizure medication fairly quickly, and the seizures stopped.

I thought I took it very well – I felt strong. I knew these seizures would come and I thought I handled things well. Very matter of factly.

Unfortunately I didn’t handle things so well when the seizures started again – but this time I was at home, with no doctors and nurses around, and the seizures looked different. A couple of days ago we noticed that when Hope started to wake up, her face, eye and arm would begin to twitch for a couple of seconds. We didn’t know if it was just normal baby twitchiness but something didn’t sit right. I took a video and sent it to our neurologist at Sick Kids. They called me back rather quickly to schedule an EEG – he didn’t like what he saw – and that pushed me over the edge.

I then lived in a total state of fear. Every time she started to stir because she was waking up, I was sick to my stomach because I knew we’d see one. I cried all day, overcome with the strongest state of anxiety I’ve ever experienced. There’s nothing you can do – I would just have to watch her have one. I felt so helpless.

Today she had her EEG and things went well. We were amazed at how well she did and she lay on a table and the lady glued a bunch of leads to her head. A couple of times she squirmed, but then I would touch her leg and she would stop. I feel like she’s already used to having so many tests that the more she is touched, the more relaxed she actually is! Unfortunately an EEG can only spot a seizure while you’re having one – which of course she did not have during the test. However, they again noticed that her brain waves are abnormal – which we knew, and because of the videos I took, they knew what she was having at home were indeed seizures.

The update: they decided to increase her medication a little bit, and instead of once a day we will administer it twice a day so that it is in her system more evenly. After a couple of days, if she is still having seizures, we will include another medication on top of what she’s taking. Thankfully, that medication doesn’t have any side effects and the doctor hopes that she will eventually be on that one only.

During this whirlwind, at the right time, I was reminded of the verse found in Proverbs 37:5

Commit your way to the Lord, trust in Him, and He will act.

Guys – let me be real with you. Trusting in the Lord is hard, and waiting for Him to act is hard. So hard that I’m not going to pretend I have it altogether. When I think of the mountains and the valleys, I realize that I have been so deep down in that valley it’s only God that will help me out. It’s like I’m trying to climb out of it with everything in me, but nothing I can do will be sufficient to bring me to level ground because I get too tired. Too weary. Too depleted of my own strength. And then He reaches down and rescues me – He really does – it’s like once I’ve hit the point where I can’t do anything anymore, He reaches out His arm for me to grab hold of. He fills me with peace, and it’s this continual act for me to choose to remember how He has been my help before and how He’ll do it again. And that becomes what spurs me on. But oh boy, it is hard some days.

Thank you for continually praying for us. We love seeing the way God has already worked in her life, and are trying not to get worked up over things that come/may come. Please continue to pray that the medication she is on would help to control her seizures, and there wouldn’t be any side effects as a result.

And now, because she is too cute, here are some pictures to brighten your day…

Xox