Montana suffered a traumatic brain injury in 2002 and continues to need considerable therapy, medical treatment, equipment and aids. We are grateful for the encouragement and support that we receive for Montana.
If you would like more information about Montana, then please contact Tania or Andrew at firstname.lastname@example.org.
All donations of $2 or more are tax deductible and you will not receive any additional credit card charges.
It's so hard to believe that 12 months have come and gone. We have now been in Tasmania for 81/2 years. Our 9th winter and thus far it's turning out be one of (if not) the coldest winters. We have had such a busy time in the last 12 months. I can't seem to place my letter from last year so bear with me if I slightly repeat myself.
In February 2015 Montana had her 2nd lumbar puncture done in hospital in Sydney by Dr Gill. In April we got the results of that lumbar puncture as well as the previous lumbar pncture which showed that Montana has now got Chronic Encephallitis. The treatment for this is to trial IV immunoglobulin for 2 days and then IV sterioid for 3 days every month for 6 months. This required Montana and I to fly to Syndey every month for 1 week. It is very expensive treatment and because it is not recognised as a treatment for this condition, we had to get special permission for this to happen. We were blessed to have been given approval for this.
So starting in July 2015, Montana and I began our monthly trips. We would fly to Syndey on a Sunday. On a Monday, Montana would start her treatment at 8am and be hooked up to the IV till around 5pm. Tuesday was a really long day, 8 am till 6pm or sometimes up to 6.30pm. Wednesday and Thursday were short days where she was only hooked up for about 11/2 hours and then monitored for the next hour. Friday we would get to fly home. We would be home for 3 weeks and then do it all again. Twice we were blessed to be able to catch up with my mum and dad in Queensland between the treatments.
Wen we first started the treatment it did increase her seizures a lot but it did help Montana to be more aware of her surroundings. But as parents we were concerned with waking Montana up (self-awareness) to realize how terrible her life really was! Really tough decisions to make. And unfortunately no one could help us decide what was best for Montana.
In December, at our last visit, we got the results of Montana's last lumbar puncture (that was done in November), the result showed that there was an improvement but not as much as they had hoped. It was at 54 and it dropped to 39. So it was decided to give Montana a couple of months without treatment and see how she went.
By the time we left the hospital Montana's seizures were decreasing and she was definitely more alert. We were seeing some really great results. By January/February 2016, we went nearly 22 days without any seizures at all. When Montana is not seizing she progresses so much cognitively. She had progressed from a 2 cell screen choice to a 4 cell screen choice on her IPad communcation program. Montana was making lots of noises and asking us to help her make her toys go (operate). Massive improvements. She even learnt to use one of her toys all by herself. We had a new support worker (Kim) start with Montana, and she has been amazing in helping Montana to achieve such great results.
By the middle of February, her seizures started to come back. Very sad. They started coming back in little bits but by the time we went back to hospital in Sydney in April, they were back fully. Another lumbar puncture was performed but as yet we don't have those results. At the hospital visit we were offered 3 different choices of treatment, 2 of the choices were chemo drugs (more experimental and no idea if they would work) and also the treatment we had just done, which was very hard on the family and Montana. So we chose that one.
The next stage was to try and get permission to do the treatment in Tasmania so we wouldn't have to do so much flying with Montana and also that Andrew could help with the hospital tme. After a lot of paperwork and committee meetings we have received approval for 6 months of treatment to be done here in Tasmania.
We did the first lot of treatment in April. This has increased Montana's seizures to about 3 every day. But it is making her much more alert and for the first time since I can remember, Montana is laughing. And it's lots. Sometimes we are not sure why she is laughing and then other times she might laugh when Rach is getting in trouble or there is something funny on the TV or it could be sometimes when we are laughing at something. It's just so awesome to see. Really loving this about Montana. She is requesting us to interact with her so much more. No longer is Montana happy to be left alone and not be part of what's happening around her. A couple of weeks ago Rach had some friends over and they were looking at photos while sitting on the lounge. Monny would have in the past just ignored them all, but this day she kept going past tryng to work out how to sit with them, until eventually she sat beside her sister and tried to look at what they were doing. She is really enjoying life and showing us if she likes something or if she doesn't. In everything there is also the negative side. If Monny doesn't want to go where you are going she won't. Another new thing she is doing at the moment, is making noises like a baby when she is trying to go to sleep. We now know when she wants to sleep.
Thank you again for all your help with Montana. We are finally getting somewhere, both from your continual financial support along with Dr's who are finally finding out why Montana has not been able to progress. We are getting results! Great results.
Tania and Andrew