So after a year we finally heard back from the external advisors through ACC who have decided that our claim has not been approved because the treatment for both Thomas and I was appropriate and did not cause the injury that he sustained. It was a very detailed report and was quite informative regarding suggested causes for Thomas’ brain injury.
They have suggested that Thomas had an unexpected (and very uncommon) cerebral sino-venous thrombosis. It says that the incidence of sino venous thrombosis is rare but variable with an estimated incidence of 0.67 / 100, 000 children per year. It then further lists a few risk factors leading to the last one in the list, which is of course maternal pre-eclamptic toxaemia. And there it is!
I am no mathematician so I had to consult my calculator, I mean, my husband. So I am really gobsmacked! It works out to be 67 out of 10 million. That’s less than 1 per million. He really is the definition of less than a one in a million baby. You know I always read statistics and think that it’ll never be me. Well so it is…
And moving on to the topic of ACC. This means that we will face some struggles with equipment and funding in the future. Especially, where therapy is concerned. We decided to go down the private therapy road for physical therapy because we just felt that we had to do more for our boy. It’s so hard to find a balance between vision and physical therapy. Where vision therapy is concerned, I am very happy with the support through BLENNZ and the resources they provide. This is going really well. Thomas has days where you can see him quickly glance at something for 1 – 2 seconds which is a big improvement for him. Up until 5 months old, he didn’t look around at anything.
Where physical therapy is concerned, as his main caregiver at home, I felt I needed to be doing more with him. Thomas does have a VNT through the hospital but she has had to work really hard on sourcing equipment and this meant that physical therapy got put to the side sometimes (not all the time). Also, the VNT cannot come all the time, they have restricted funding allocations too. So we approached Glowkids and it was the right decision.
We are very fortunate to have a conductor who is a sensory specialist teacher at Glowkids. Thomas requires private sessions and these are not funded. It is not cheap. We only want the best for Thomas and to give him the best quality of life. For the new year I would love for Thomas to attend twice weekly however we cannot afford this. So, I have sat on the Givealittle page idea for a good while. I have finally decided to set it up in the hopes that we can access more therapy for Thomas.
Here is what Thomas’ therapy looks like.
Please help us by heading over to our Givealittle page either on the Facebook page or listed on the right hand side of this blog or below. It would mean so much to us to be able to give Thomas these opportunities. Please share with anyone you think will be interested in supporting us.
Thank you 💕
Minding Thomas 