โ€œWhat does she have?โ€

You know how everyone tells you not to Google? Well, I’m the worst for that. The second we knew something wasn’t right during my pregnancy, I started to Google. What I searched for changed all throughout our journey – even up until today. Yes, I will admit that googling what we thought she had at the time caused me to go into full on panic mode on many occasions. The more I would read, the more terrified I would get, but I just couldn’t stop.

Then those searches turned into trying to find other people going through something similar. I wanted – I needed – stories of hope. I needed to know that no matter how bad a diagnosis could be, suffering and joy could co-exist, and that we weren’t alone. I know that everyone’s story is different, but coming across similar stories was and has been a tool in helping my heart grow and heal.

I’ve had enough people ask me what Hope’s diagnosis is. I’m always hesitant to tell people, because – well, Google. But it’s time. I hope that someone in similar shoes will stumble across my blog or instagram, and feel encouraged, helped and know that there is hope in the darkest of times.

Hope has been diagnosed with Aicardi Syndrome. Although Aicardi Syndrome is a rare genetic disease, all of our genetic testing came back negative. That is because Aicardi isn’t something passed down, but a new mutation that happens in the individual. Hope has been diagnosed based on clinical findings: agenesis of the corpus callosum (the bridge between her left and right lobes in her brain is missing), infantile spasms (seizures), scoliosis and an eye deformity. We had been given other names of things while I was pregnant, and when Hope was born, the first neurologist we met in the NICU told us about Aicardi. When I Googled it, I couldn’t believe that basically all of the things that were listed, Hope had. Aicardi Syndrome only effects girls. We were told that it is a mutation that occurs on the X chromosome, and because girls have two, they survive, while boys don’t make it sadly. Now, with all of that said – you have to take your googling with a grain of salt.

We know that girls with Aicardi Syndrome vary greatly when it comes to the degree of their struggles. We have both had to remind ourselves over and over again that God created Hope, fearfully and wonderfully. He is the only one that determines her days – not a diagnosis – just like the rest of us. So just like we all should be living, we take each day as it comes, and try our best not to worry about tomorrow. Although there are tough days, we have witnessed miracles. One huge one being that Hope is with us. She turned 7 months this week, and we were told she wouldn’t come home with us from the Hospital. He is always always at work.

Now that all of that is behind us, soon I will share with you what a typical day looks like. This was something that I was desperate to read about and see on my frantic Google searches. Could life still be normal? Were these families happy? I hope that an honest glimpse into our life will be just the thing someone needs to read and see.

Coming soon ๐Ÿ™‚

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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