A New Found Freedom

30/08/2017 21:18

It is funny as things settle back to routine how fast time goes by.  Sadie has continued to have her seizures under control, by putting her back on the meds she was on prior to her relapse.   It is interesting this time around because we had a break in time for a year with Sadie on the meds, off the meds and back on them.  This has been a good gage for us to determine what  truly is side effects and what is Sadie's behavior.  I think that has been one of the biggest challenges with Sadie's journey.  The seizures obviously are the big issue and for so long you search for that right medical cocktail to stop the seizures.  Once you get that you celebrate no seizures, however then you have to live with that cocktail.   Sadie is 8, but developmentally is a bit behind in some areas, and sometimes that behavior with her meds can be a challenge to deal with.  The reasoning with her is different, and we work through this every day.  It still doesn't stop the frustration I feel when I am out and about and she gets upset, and people don't understand.  Honestly it is what it is and we know how far she has come these last few years.  We have spent a lot of time better understanding the medications she is on.  You know they are helping with her seizure control, but what else is it doing, how else is it impacting her day to day.

One thing that has been a huge win is Sadie's new found freedom, her bike! We worked with the Occupational team at the IWK and a few short months ago Sadie was fitted for a 3 wheel trike.  She did so amazing on it! For all this time Sadie has never had the joy of a bike ride, or going with her friends around the block for  a ride.  This became something else as a family we could do and enjoy with both girls.  I am proud to say Sadie is now on a two wheel bike with training wheels!

As this journey continues, it really becomes about how we can open up more of these experiences to Sadie so she can continue to grow and learn.  Every day I see her moving forward and progressing, and it is so motivating as a parent.  We continue to move forward through this journey as a family and a team.

The Relapse

09/12/2016 21:07

The great thing about time, is that you forget.  You forget the sounds, the actions, all of it, until it comes back.   This particular day in November started the same as most days, the mad rush in the morning to get the kids to daycare, and us off to work.  My morning had two back to back meetings, which I always take my phone, this particular morning I didn't.   I got back to my office, and my phone had blown up.  Sadie's school had called multiple times, as did Blair.  I quickly called him back, as I dreaded hearing the words, "Sadie had a seizure at school." I needed to get home.  A great work friend, rushed me home.  It was really strange.  Sadie was up and around and seemed ok when I got home.  I read the note from the school, and we thought maybe they got it wrong, maybe it wasn't a seizure.  The details in the note seemed very accurate and in my heart I think I knew that that is what it was. That night we put her in with me, and she had one in bed with me through the night. It was like before full blown, tonic clonic seizure; arms, legs shaking, short in time, eyes rolling back and open, blue lips. The next day was tough, it was confirmed we were seeing seizures.  The next few days she had them sporadically through the nights.  We were trying to work, manage her going to school or not.  We were heading into the weekend, and Blair and I flying to TO to be part of our nephew's christeninig.  Through the night, she had one, and ten minutes before my mom came to watch her she had another.  Problaby the worst feeling in the enitre world to leave her.  The next week things continued to get progressively worse.  We were back to seeing seizures every 3 hours.  The one day it got really bad,  I was home with her.  Blair was away, and  I was ok knowing she would be sleeping them off.  That morning they were happening pretty regularly, and I gave her adivan, her rescue med around 9am, thinking it wuold help settle things for the day.  Emilia was due to come home from the sitter by 5 so I thought I would try and tub Sadie while she was awake, and still on adivan. I got everything all ready, and got her in the tub, and felt her stiffen into a seizure while in the tub.  I grabbed her with all my might, and lifted her 50 pounds soaking wet out of the tub, onto the bath mat until she stopped shaking.  I sat on the floor beside her, wrapped her in a towel and started bawling.  Crying for her, and feeling so frustrated, helpless, mad, and upset.  I grabbed my phone and called the IWK, I need help at this point, and some guidance.  The plan was to take her to Truro Hosptial and get them to call the IWK, get an abulance, and get her in. I texted some great neighbors who came over, to help me get her off the floor and dressed.  I remember sitting in the abulance as we rode in, and it all came flooding back. 48 hours, 30 seizures later.  So we were back.  I think that is the realization we came to terms with this time around, that this is how her Epilepsy is going to be.  We are going to have peaks and valleys, and we just have to help manage them with her.  It was different this time around for a few different reasons, one she is older, and stronger and can fight back a bit more now.  Also Emilia is old enough to know what is going on.  She was a baby at the start of this, and never really knew any of this.  We tried to shelter her from the seizures, until Sadie had one on the couch beside her, so then you educate. This spell was around 3 weeks, with a lot of seizures, and meds, and med adjustments.  We also had the first trip to emerge from a seizure fall.  She was in front of me, and  I couldn't get to her on time in the hall, she fell having a seizure, ans split her chin on the trim as she fell. Another trip to emerge and 3 stiches later. Honestly a brutal 3 weeks, but we have to just roll with this.  One thing is I know, the Sadie is honestly and truly my inspiration.  She has been so tough, and brave, and just handles all of this with positivity, and an amazing interstrength.  This week her school raved about how great she has been doing, and totally engaged in her work. Less than 4 weeks ago from today we were in a hosptial bed.  Team Rhyno picked up where we left off with this.  Blair and I managing this as a team with our girls. We had a lot of amazing support from my parents, as they are helping with Em, and just being there for us.   This was our bump in the road and we know now, we can handle it, Sadie can handle it, and we can move past it. 

2 Years Seizure Free, Moving on From the Seizures.

25/09/2015 21:39

Well today we are here,  A day we never thought we would get to, Sadie being 2 years seizure free!! I feel a lot of things today, but most of all hopeful. We still are not sure why, if its meds or if its her out growing them, but 2 years ago this day honestly felt like it would never come.  I like to think I am a positive person, but for so long it felt so hopeless.  The goal was always to get the seizures stopped and now that we are here, its now about Sadie catching up.  Her speech is coming more and more every day, and she is loving school.  I relized that I can't keep her in a bubble, as much as I wanted to.  For so long we have been protecting her, and fighting for her to be strong, now its time for her to do that.  It is scary as hell, but its part of moving forward.  Moving forward also means trusting she is in a better place with her Epilepsy, and not panicking if she sleeps alnight in her bed, or doesn't respond to me as soon as I call her.  These things are the things that you live with and try to move forward from. Blair and I wonder everyday why this happened, but one thing is for sure we have taken from this is the fact that there is nothing we wouldn't do for our girls and our family. Things like this can tear you down or make you stronger, we refused to ever let this bring us down, and we did everything to make Sadie feel loved, and safe.  We don't know what the future holds, but today I feel hopeful, and pretty proud to be the mom of Sadie Rhyno!

I know way to long!!

03/04/2013 20:55

Ok I know its been awhile for a blog update but here I am! Well the last month has been good. Sadie is the clearest I have seen her in so long. Honestly think the clearest I have seen her in almost two years. I never realized how funny she was! She is so alert, and her speech is better, she is trying more, but something we will continue to work with speech therapy on. She is so much more steady on her feet and can actually get through her preschool morning without being so tired she can't stand up. She continues to amaze me with her strength and determination.  I feel a little bitter sweet about things though, because Sadie did have a spell this past Easter weekend, as we head to the three month window. I guess I felt that this diet would stop the seizures, but in my gut I knew it wasn't a cure. The spells are improved, and Sadie is coming, out of them quicker but they are still there and this is our reality. The other night I felt so frustrated with all of this, and constantly am looking for a reason why, and why her? I know I will never get this answer, but I know that Blair and I will do anything for her and her sister. This is our thing, and we will continue to make life for Sadie as normal as we can.  My Dad comes home next week and I am so excited for him to see Sadie, she asks for him constantly and I can't wait for him to see how clear and improved she is. I have learned two important things during all of this, make the most of the good days, and our family is our most important thing in the world.

Continuing on!

21/03/2013 20:51

Well we have had a good few weeks. We had a spell last weekend with seizures. She started on Thursday and had them Thursday and Friday. Her ketones were lower then normal so once they started the amount of seizures didn't really surprise us. We met with Neuro today and we are going to try and incorporate a night snack to see if we can keep her levels more consistent, as her ketones are high in the afternoon and lower in the am, we will see how that goes. Sadie continues to improve on her clarity and focus. We have be trying to introduce some new words and she has been doing great.  Today we did an interview with CTV Blair and I and the girls, to talk about our experence and shed some light on Epilepsy! We were so excited, we all were purple andd the girls were great. The piece will be aired on March 26th...Purple Day! for all our followers please don't forget to wear Purple proudly on the 26th of March in Support of all the familes out there living with Epilepsy. We are so proud of Sadie, she continues to do well on the diet, we are so pleased!

Our sweet Sadie's great week

10/03/2013 20:47

Well we continue on a great path with Sadie.  Her clarity is outstanding, I honestly don't remember the last time I saw her like this. She continues to enjoy the diet, we have really gotten pretty good managing it. Sadie's freebee snack is iceburg lettuce, she's allowed 40g a day, and she loves it! what child would sit at the table and gobble plain iceburg?! My mom and I and Ardy are going to try and take Sadie to her first movie tommorow! We are going to take her snack and iceburg and see how it goes! Now the new challenge is really incorporating the diet into our life, as far as taking her places and adapting to her keto snack and meals on the run. Sadie's school took some pics of her at school,  I attached in the album, my mom said it best, she said she just looks like a little girl with her us that is the best gift we could have ever asked for.  The next few weeks we shall see what happens seizure wise, but we will stay positive and enjoy every clear moment with our little hero!!

A great week!

02/03/2013 19:30

Well what can I say, Sadie Rhyno is my hero! Sadie has had a great week, her brightness, clarity, and alertness is so much improved, Blair and I are honestly blown away by the change in her. We went for our one month follow up and even after having seizures on Sunday her appointment was Tuesday and they said its the best they have seen her in a year! She was still a bit tired, but talking more, more energy and smiling and laughing. We really hoped that this area would improve with the seizures because for so long it has been like Sadie has been in a fog with meds. She has been so dizzy, shaky, tired and just can't focus on anything, no wonder the poor thing coudn't get her words out. We don't know what the future holds for her and her seizures but its certainly easier to deal with knowing her mental clarity is better. We still have our 3 month window, so with two still to go, that will be the true test to whether the seizures are going to stop or improve.  I will continue to blog as we get updates to share.

A rough weekend

25/02/2013 20:19

Well we had a bit of a set back this weekend, we some quite a few seizures starting Saturday morning. It was really upsetting honestly, but we are trying to stay positive and know this doesn't mean that the diet is not working. We know it could take up to 3 months, but it was still upsetting. Sadie's eating was better through this spell, which was great although her liquid intake was brutal. Her ketones were a bit lower but nothing too low. She was so fantastic this week though, was so nice to have our little sweet pea back!! So full of energy and so alert.  We will continue to push through this little bump in the road!

Just over three weeks!

21/02/2013 19:21

Well I think the cold finally broke!! My Nana said it best when she saw Sadie on our Sunday visit, that Sadie has the sparkle back in her eyes! Her energy levels are much improved, and she is doing so good on the diet. She is back to feeding herself most of the meal, except the cream which we have been feeding to her just because it has her meds in it. In another month or so she could probably do on her own. We are really nervous right now, just for the not knowing and knowing this is around the time we would see seizures. Neuro called today to check in and reminded me that even if she does, it usually takes 3 full months for a true picture, but I know deep down we will be disappointed, but it is what it is. The flavorings for the cream have been great, and Sadie has been eating fresh fruit with her meals and snacks. We go next week for our month check in and blood work. We meet with Neuro and her dietatian. Her weight has gone up about 2 pounds since starting, and we see a little belly, but she needed to have some more weight on her she looked so frail.  So we shall see what the next week or two bring...fingers crossed!!

Update almost three weeks in!

17/02/2013 08:13

Well its been almost a week since an entry, but wanted to wait till we had a good update. So this week started a bit brutal. Sadie was still so tired, having 3 hour naps, not really wanting to get up at all. This was so frustrating, and honestly we were not even thinking at the begining the diet could even do this, or was it? We went in this week for blood work and they checked for a lot of different things, but mainly to see if her valproic acid level, (her med) was too high. The problem is that the tiredness could have come from a few different things, the diet, a slight increase to her meds, or the cold, that cold we can't get rid of!! Now we had to do process of elimination to see what it could be coming from. Her blood work all came back good, med level a bit low, and the diet related checks they would check in her blood were good, but it did show a bit of bacterial infection, could be the cold. So we did start a med drop this week, one med we were starting a decrease on to see if that would help at all, that was in the plan all along, since it didn't really have great results with control prior to starting the diet.  I don't think the ideal plan would be to drop the meds this soon, but its also important to get Sadie out of this state too. So as the week as progressed, her cold has been better, we have had a few good days with the med decrease and honestly she is starting to come around a bit! Her eyes don't look as tired, she gave me attitude going to bed last night, which I loved since she wasn't so tired she would crash reading stories. So we are pleased, but also a bit apprehensive... we are going on week three and honestly as far as seizures go we don't know what to expect. Whatever happens we will deal with it, but its so nice to have our girl back, laughing, playing, and being 3!

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