Weight: 11.40kg
His weight is the same as yestrday but l do think that a good sign is that we had to wrestle his bottle from his hand in order to weigh him! (he gets weighed naked each morning and today he was fighting me as he didn't want to let the bottle go! Yay!)
Yesterday was certainly a good one! We had a big conference with all the doctors, therapists and staff working on Tayden's case (quite daunting to say the least to walk into a room of 15+ people and field questions on how your child is doing!) to ascertain where we all and more importantly Tayden, are exactly and to map out the way forward for him.
FACT - he is drinking (and drinking enough that he can sit and spit at Prof Scheer, how blind! Don't even comment here except a laugh, l didn't know which way to look!)
FACT - he is eating enough at the moment to maintain his weight, although there is not much variety at this point. Flavours of the day today are McDonald's chips, wagon wheel chips from Billa (AWFUL things but he loves them!), some cereal and some buttermilk biscuits. We spend alot of money each day trying to see what he would like to each, to increase the variety and ensure that there are enough snacks available at all times (Yes Eva, I promise we are trying!!)
FACT - the day of the removal of his peg has been moved forward from Monday to Friday THIS WEEK! And how awesome is that - Friday is my birthday and what a great present it will be for both Rob and me!
We have been told that Tayden is doing brilliantly on the program and everyone is extremely pleased with his progress. In fact, we have even been given permission to go home and leave the program earlier by early next week, that is how well we are doing. We tried to get a flight home but it was not meant to be...so we are here in Graz to experience the magic a bit longer.
Basically they want us to settle with Tayden away from a hospital environment, to see how he does in the real world.
We know that it is important for him to get settled and drinking and eating without the confines of the hospital, especiallly since he doesn't do well in the hospital environment. To continue with the program 'at home' or somewhere other than the hospital and be successful, is just as important as being here. But it is a HUGE step that they have allowed us to even consider going home early/middle of next week and because we can't, allowing us to move to a B&B. We were told that they wanted Tayden in hospital to start with (I am assuming it is because they thought there would be issues, as the Prof requested this from us, it wasn't our choice) and now we can move him! Yay!
So, to be able to move out is a big and very positive step for us, although it is going to mean that my internet access is limited. But we will update when we come to the hospital as often as l have a moment, so do keep watching the blog!
Even though we will leave and stay in a nearby B&B, as we and the doctors believe it will be best for our little man, we will still come each day and continue his therapies, do his play picnics and let him interact with the other children. The doctor said that we should go on holiday, visit Italy or Germany, he just didn't seem to get that we are NOT here on holiday, and each day that Tayden can have more therapies and be able to progress more is what we are here for. PERIOD. Tayden was and is our focus here!
This move to the B&B will be a mini break for us anyway as we have been told that there is a little farm out there with animals, a huge forest to walk through and place for Tayden to play. What more could we want? A child that eats and drinks without a tube? Hmmm....check (well from Friday anyway! LOL...)
Yesterday's therapies went so well for Tayden, we were told that we should enroll Tayden in music when we get home as he has a real gift for it, the music teacher was amazed by this rhythm and dancing, she had him playing the drum and he played it in beat so she was just so impressed with him! He must get it from his granny Arleen because neither Rob or l are particularly musical.
Speech therapy also went well, Elisabeth had set aside a couple of sessions to teach him how to blow and suck a straw, which he mastered in less than 10 minutes - must be the 2wk before that granny spent teaching him to blow out his birthday candles that laid a good groundwork for this! Rob, Tayden and l now each have a piece of plastic tubving to vchew on (I lie NOT!) to strengthen our jaw muscles - well Tay's jaw muscles, Rob and l are just along for the ride since he imitates us.
OT is also going well, he is very uncomfortable on certain obstacles but making progress on others. Even the sensitivity to having his face wiped and nose wiped came out today and we were assured that he is not naughty, it is simply too much for him to have this done and we need to be patient and work on it.
Tayden gave everyone in play picnic a very good example of sensory and tactile issues as he tiptoed across play picnic after having walked through crumbs on his way back to me. By the time he got to me, he was in tears - shame, that such a little thing as crumbs on his feet can upset him so much, it shows we still have much work to do on OT but l am sure we will find the right therapist for us in PE who can assist us.
This morning we will start out with swimming which he is sure to love, followed by play picnic and then later this afternoon his psychology session. A quieter day for us but this will allow us to do what else we are expected to do as part of the program - go out somewhere and EAT with him, have him interact with groups of people at a restaurant, on the tram etc and get him out of the hospital. I still haven't bought him that ice cream that we were meant to, so perhaps today is the day for that.
I just want to stress that even though his peg is coming out on Friday, it is still a critical time for us and that is why we are staying closeby, monitoring his weight, seeing if the peg wound is healing well and without any issues, getting as much therapy as we can and learn all that we can while we are here.
Let's hope that today is just as successful as the previous days have been.