Olivia update: Sept 5th, 2021
This update has been a long time coming… and you are about to find out why.
Aug 1st, 2021
As I had predicted in my last update, we arrived home around noon on Sunday, Aug 1st. Aside from our discharge time getting delayed, everything else went smoothly. Olivia has continued to improve since being home, however, she is still dealing with some muscle tone loss. Much like her previous hospital stays, being confined to a bed for almost 3 weeks has a way of undoing progress. Thankfully her setbacks are minor, so her recovery shouldn’t take too long (maybe another month or so).
During her hospital stay, she had an EEG, which showed more non-visible seizure activity in the left hemisphere of her brain. Because of her test results, we decided to add a third anti-seizure medication to her list of meds. This particular med is specifically designed to help control non-visible seizure activity. So far it’s been just over a month since she started her new med, and I’m already noticing a minor improvement in her language and fine motor skills. Over the last few weeks, she has been slightly more interactive with her environment, and she has also been trying to say more words. Hopefully, she will continue to tolerate the med as we gradually work to find the right dosage for her. If all goes well with this med, we might try to wean her off of her phenobarb to see if she can regain more cognitive abilities.
We've been home now for one month already, and things are continuing to go well. During the last month, we had a brief period of settling in before we had to begin the process of moving back into our old place. After almost a year and a half of waiting, the renovations were completed and we were able to move back home on the 14th of August. It has been a chaotic few weeks of getting settled and unpacking our life, but we’re happy to be back. Over the last month, our nursing help was less than ideal, so life has been a lot more stressful lately than it should have been. We did manage to get a solid week of help when we needed it the most, but since then, it’s been an ongoing struggle. Our situation is starting to look up again as we are about to bring on two more nurses. Fingers crossed that things will actually work out in our favour this time.
Sept 1st, 2021
We also have some exciting news to share…
After many discussions and a lot of careful planning, we are happy to announce that Olivia will be attending preschool on a part-time basis this month. When we felt ready to make this decision, a whole team of people came together to help us plan and prepare for it. They worked hard to secure all the help and funding we would need so that this adventure would go as smoothly as possible. Under normal circumstances, a complex child like Olivia would have a caregiver and an inclusion worker with them, but because of covid restrictions, either a nurse or I will be attending school with her to help with all her special needs. An inclusion worker would have been amazing because they know how to help other children interact with non-verbal kiddos, but we will have to make do without one for now. We are all excited, and a little nervous about this journey we were about to embark on. It’s a scary experience for us but we’re hopeful that things will go well.
Sept 5th, 2021
It is only a matter of time before life becomes more settled around the house. I’m excited for when that time comes, and even more excited to be able to share more of Olivia’s incredible story with you all.
Please take time for yourself, and those around you.
❤Gloria, Chris & Olivia❤
