Day: 1
Weight: 12.00kg
We were all up bright and early today, ready for what lay ahead and it was interesting to say the least.
We started off the morning with 9 doctors in our room, felt a little like an alien under a microscope but they are all so friendly and eager to assist, it's great. Then all the participants of the program gathered in the TV room where we introduced ourselves to the other families. We have travelled the furtherest to be here apparently, everyone is very impressed that we have undertaken the journey all the way from RSA! There are quite a few families here from Germany, one from Austria, one from the UK, one from New York and then us.
There is a set of twins here, one eating perfectly and the other not touching a thing. The kids are all really cute but many of them have other issues and challenges to deal with on top of the not eating including down syndrome, heart problems, hearing loss, reflux, pancreas, sight issues etc. At a glance Tayden seems to have the least of all issues while the other parents have alot of other worries to deal with as well. I really do feel for them and salute them in their endeavour to help their children.
Everyone is very happy to be here, there are 3 of us as inpatients and the rest are outpatients. 11 kids in total (incl Jason but we are not sure what is happening there), ranging in age from 16 months to about 3 1/2 years old. There are 2 kids who are still here from last group's intake, they are contining with the program for a while longer.
We had our first play picnic at 12 today, what a nightmare! LOL...imagine 10 kids in a room with food on the floor, their parents and about 6 doctors, therapists, psychologists etc in one room - it was a very tight squeeze and some of us were asked to go and stand behind the one way mirror to give the kids more space to explore. I did and then Tayden screamed so much when l left l had to go back.
I would like to say that Tay was a star and ate everything in sight but in all honesty I cringe when I think of his reaction to all this...he walked into the room, took a look at all the food infront of him, picked up a bowl of pasta and sauce and threrw it across the room. The other parents gasped in horror, I wanted to crawl under the chair but the doctors handed him a bowl of custard, which went the same way...eish! He then picked up a pom bar chip sucked on that and that was his contribution to the hours proceedings...He sat on my lap and Rob's lap in turn and watched the world go by. They tried to introduce him and encourage him but he wasnt interested. There were so many people and such alot going on that I don't really blame him.
We started the program on a solid 12kg mark and have dropped one feed with immediate effect (10am feed). He doesnt seem bothered by this at all yet and did eat a little cereal for supper. I think he is really going to feel it when the second feed disappears and he starts getting hungry. He is still sucking on the little cheapie feeding cup I bought him from PEP (goodbye all the money I spent on Dr Browns, NUK, Snookums etc!!!) and does have a sip of water now and then.
At the moment the doctors are extremely pleased with this but once he is used to the water and realises there is no danger / he is not going to get sick, we will change it either to his pediasure or add kj formula to the water. We need to get kj into him and if we have to trick him to start with, then we will. We will see how things go though, too early to say. it goes without saying that we are nowhere near the amounts of fluid or food that he needs to sustain himself, he is simply impressing us by taking the first step so confidently and quickly.
We received our list of therapies for our time here, boy, are we going to be busy!!! Each day has play picnic at 12-1, then other therapies are divided into the day, from physio, logoped (not sure what that is), speech, OT and music therapy to swimming and even a visit once a week to the child psychologist to ensure Tay is managing okay, we are going to need a holiday by the time we get home!
I took Tayden to the park this afternoon and he had a ball with so many other kids there and the new surroundings. But he also had a really bad fall and now looks horrific (thank goodness I havent figured out how to download the images yet!). He fell face first onto some wood chippings and gravel, his nose and mouth were pure blood but I cannot actually see where in his mouth he hurt it, l am thinking perhaps he bit his tongue - difficult to say as he wont really open his mouth for me. There was blood all over his white shirt and l also had some blood on me...good thing we were at the hospital so we fitted right in! 'The nurses demanded to know what happened to him but after a bath to clean him up and some tlc, he is looking much better.
So, with all this blood in mind we went searching for the laundromat on the hospital grounds. We found it quite easily but on the way back to collect it, the doors were all locked! We managed, by a really round about way to find it eventually but the machine was still going. I am hoping that everything is okay, not that easy to program a German washing machine! I will send Rob to explore further a bit later...
Rob and I are getting spoilt by enjoying our meals from the canteen here, and we even had Tayden sucking on a piece of spaghetti earlier today. Supper tonight is a big fresh, green salad with cold meat and eggs, along with some rye bread. Boy, l am enjoying not having to cook!
Thanks for all the comments, it is nice to know that people are reading and are out there, so please continue to leave them. Tayden is well, he is fitting in here and already has a favourite nurse, a favourite toy and walks around the ward as if he owns it. We are dealing with some major temper tantrums and he is quite insecure at times and looks for Rob and me but all in all things are well. Our room is right opposite the TV/lounge area so we just pop across for him to play and he loves the toys and people popping in all the time to say hi to him.
Apart from the fall, his health is good, the peg seems to be settling itself after the antibiotics given by our paed in PE.
We are pleased with his progress of wanting and showing that he wants to take his little feeding cup/bottle, this is a really major breakthrough for us. I can see that he and Eva (the physio) are going to knock heads but she likes a challenge and l am sure Tayden is up to it! She was the one encouraging him during play picnic today and she got the death glare from him each time she tried to get him off my lap or eating something. Let's hope his table manners improve, as by the end of the picnic the other kids had cottoned onto throwing the food so you can imagine the chaos!
Let's hope tomorrow goes just as well as today!