Today was our last day of therapies and play picnic. After being here 5 weeks, today is the last day!! Tomorrow we leave Graz for home!
We had Elisabeth at 9:00 for speech therapy. Being our last day, we spent the therapy session watching and observing. Normally we wait outside because Jason does better and allows Elisabeth to work harder with him when we are not there. I guess he feels if we are watching he is intimidated and also if we are there he can work on our emotions to try and get him out of there fast! The therapy session went really well, it was amazing to see the progress Jason has made since the first few sessions. He now allows Elisabeth to go near and sometimes in his mouth with the finger toothbrush, allows the 5ml syringe to go into his mouth; he even purses his lips for it!! So Bruce and I can see HUGE progress and it was really great to see. Elisabeth has to really work hard with Jason once he has the liquid in his mouth because he quite happily keeps it in his mouth. Elisabeth said that Jason definitely has a fear of swallowing whatever is in his mouth and we have to really work at working in his mouth area to give him confidence and trust in order for him to realise that it’s ok to swallow and nothing will happen once he has swallowed. In our 45 minute session with a whole lot of work Elisabeth managed to get Jason to swallow 4 x 5ml syringes of water. I know it doesn’t sound like much but it’s a HUGE step for Jason and huge progress for him.
Ingrid the occupational therapist was our next therapy at 11:00. Knowing that today was our last session she decided that she would work with him for a bit alone and then near the end of the therapy Bruce and I could go in and watch what he has been doing and have a chat to us. Well he did fantastically well. Ingrid said that today was the first day that she has actually seen the “real Jason”. She said before she thought he wasn’t capable of a lot of things but after seeing him today, he is much stronger, more alert and she was able to work easily with him. He even spoke to her in his little language! She was very impressed. During the session he was doing these strange movements with the stick she had given him, the one she realised that he was hitting like a bat but she couldn’t work out the other. When we got into the room I said “look he is fishing”. He was sitting in the lentil bath and fishing like he does at home. Ingrid found it really funny because she was trying to work out what the stick over the shoulder and moving forward was and that is him “casting” his rod! Like a true fisherman in his lentil boat fishing.
Before play picnic we had our meeting with Professor Dunitz. I must admit I was quite nervous for this meeting because this is when we were going to tell her what we intended on doing with Jason’s feeds and eating, that we had decided we need to increase his weight so had already started full feeds again. Well she was great, she said that Jason is a very intelligent little boy, he knows what eating is, he knows why he came here and she suggested that we go back to full feeds, which she was happy with, get his weight back up to 12kgs and then SLOWLY start reducing his day feeds again. Take the 1st feed away before school first and then slowly start reducing the other feeds until we are eventually on just night feeds and eventually we will reduce the night feeds by 50mls a week until he eventually has no feeds and has started eating. We explained our concerns that he is not swallowing and feel that he needs to learn to swallow first before we take away too much. So we will continue with Jason’s feeding journey via net coaching once he has gained weight and is much stronger and then SLOWLY reduce again. I will be in contact with the professor via email from home keeping her up to date on Jason’s progress and eating and she will guide us every step of the way. We will also continue therapy when we get home, find the right person to assess Jason and also the right therapists, occupational therapy and speech therapy to work with Jason. Oh how I wish I could take Elisabeth, Ingrid and Eva home with us in our luggage. We have made HUGE progress the last 5 weeks and it isn’t going to be easy finding new therapists here in South Africa.
Tonight I was actually VERY sad. I actually surprised myself how sad I felt, I am ready to go home, I can’t wait to get home but at the same time, as my Aunt said to me on Facebook tonight, I feel like this because I am leaving my “security” behind. And that was absolutely true. I was lying doing physio on Jason with him on my chest, lying down while I beat him on the back to try and get his chest clear and the tears were just rolling down my face. Yes I am leaving my security behind, I am leaving both the professors, the doctors and all Jason’s therapists behind and that’s hard to do, they have come such a long way with Jason the past couple of weeks and made HUGE progress with him and it’s very sad knowing that I am leaving them all and going back to South Africa without them and have to find new therapists. Jason took weeks getting use to them and trusting them and now we have to start all over again.
The other sad thought on my mind was obviously we are going home and Jason is not eating yet. I started this journey to Graz thinking that this was going to be it, the answer. The fundraising took months to do; I put so much time and effort into getting us here. We have so many people that have put their money towards our trip, we have so many people following this website and unfortunately Jason was one of the children that didn’t fall in the 95% success rate of the hospital. That is hard for me to swallow but at the same time I keep reminding myself, that is Jason and this journey has only begun. Graz was only a stepping stone closer to getting Jason to eat. We did not fail, we are leaving Graz with HUGE amounts of knowledge and experience that we would not have gotten had we not come here in the first place! If we didn’t come here we would never have known if there were any obstructions or problems causing his gagging, his chronic diarrhoea and his immune system problems. We now know that there is nothing wrong medically internally with Jason’s stomach and colon and we can stop asking ourselves BUT maybe there is something wrong. With his immune system, as the professor said, Jason is very small and very underweight for his age and he is bound to catch all sorts of infections and have a bad immune system, we can’t expect him to avoid getting sick all the time.
So ja tonight I feel very sad leaving Graz but I know that this is just another chapter that has ended in Jason’s and our lives. This Graz trip was absolutely amazing and I will treasure it for the rest of my life. It wasn’t easy as you know but it was necessary to get us closer to helping our little boy!!