Compared to the last 2 years, 2013 has been relatively uneventful. In May, Max had his first round of Botox and an intensive regime of therapy followed. We saw an Occupational Therapist 3 times a week and then did our own therapy in between. 6 weeks later, Max and I were both completely burnt out! He was always happy to see the OT arrive, but over time, became less than happy to do any of their activities. There were plenty of tears and tantrums involved. If we're unable to jolly him up or find another suitable activity, it creates a conundrum for me. Do I keep cajoling him into completing the task or do I allow him to take a break? Obviously, there are some things he just has to do for his hand function to improve. However, I won't allow a therapist to continue if he's really distressed. He is going to need therapy for a long time, there's nothing to gain by making it a negative experience. It's a fine line, but I'm thankful we now have great OT's who make our sessions fun and know when to back off.
The great news is, we've seen amazing results. As the Botox wore off, the improvements were largely maintained. His thumb abduction is much better and his hand is getting stronger. There is still a way to go, but it's really exciting to see him moving forward. 2 years ago, my little boy didn't even know he had a right arm, and when he eventually realized, he didn't have the co-ordination to use it. It's been a long, and often tedious process, so every step forward makes my heart smile.
Max had his 2nd round of Botox last week and the whole experience was a disaster. Whilst the Botox injections went smoothly, he had a paradoxical reaction to the pre-med. For an hour or so, he screamed until he turned purple and thrashed violently in my arms. Eventually I couldn't hold him anymore and the nurse placed a mattress on the floor. He was thrashing so much, I had to restrain him so he wouldn't bang his head. He eventually fell asleep in my arms. The experience has motivated me to really push hard with the therapy we're about to commence. If we can make further gains to his hand function, we might be able to avoid another round of Botox entirely. Perhaps I'm being idealistic in thinking this but I don't see the harm in aiming high.
From a Hematological perspective, things are still in status quo. Max's platelets have remained in the normal range ever since his last treatment 2 years ago. However, his immune system still hasn't fully recovered from the treatment, so we don't know what will happen once it does. The ITP may come back, or it may not. Ordinarily, the immune system recovers after 6 months, but it's been 2 and a half years and we're still waiting! Max was the youngest known person in the world to receive this treatment, so it's always been unknown just how it would affect him. I'm growing weary of seeing so many different Hematologists. They all have different opinions and I still don't know what to believe. For now, we continue to wait and see (doctors orders!)
A few weeks ago, we spent a week in Albury/Wodonga meeting with other pediatric stroke survivors and their families. This is now the 2nd year of the 'retreat' and we had 8 families attend (up from 3 families last year). In 2013, I've connected with several new families from various parts of Australia and slowly we are building up a stronger support network. I'll try and write a post about our time away, but here's some photos for now-
Max and his new friend Zen.
Some of our amazing kids!
Max's beautiful 'girlfriend'Ruby (aka 'Woobee'). He drove her bonkers with his overzealous love.
This year, I've finally started getting my health and fitness back on track. I've lost 40kg, with another 20kg to go! I've started running again, which is something I loved in my younger days. It was a massive struggle initially, and I felt guilty about the time spent away from Max. Now, I love being out on the road, with the headphones on and no one to bother me! Max gets excited when I go, I think he's learnt that I always come back in a ridiculously good mood. I've also started back on Community Radio and present a show once a week called 'Faith, Groove and Parody'. I also contribute pieces to a website called 'Little Melbourne', which is a guide to what's on in Melbourne for kids and families. It's a fantastic opportunity, and I love every second of it. I'm still working as a psychiatric nurse at Werribee Mercy's psych unit. As much as I complain about the place, I secretly love the chaos and the acuity of our clientele.
In 2013, we've been blessed by the generosity of our family and friends. Without their unwavering support, I'm not sure how I would've survived the 'not so good' times. In particular, I want to thank my parents Wendy and Gary for always being there for us (I could dedicate an entire post to everything they do!). As well as my sisters Tara and Kylie. They are both such beautiful, caring people- qualities I'm often lacking.
So that's the 2013 in a nutshell
Help!! I'm in a nutshell!!!
(Couldn't resist the Austin Powers gag)
Rob, Max and I would like to wish everyone a happy and safe Christmas. Your love and support means more than you could possibly know.
See you in 2014 xxx