Wednesday, January 11, 2012

Im so excited...and I just cant hide it!

Jan 11, Day 10 of wean. Today I was having a bad day, well Max was, so I was. After hospital today we came home so disheartened as Max had again eaten nothing and its really affecting him. He's really grumpy and easily upset, crying at anything.

He woke early, hungry and thirsty but only took water. We started the day with swimming at the hospital at 8:30am. Max loves swimming and Steve goes in with him as do the other 2 boys and their dads. Then 10am Physio with Eva. Eva told us to persist with the force finger feeding him. I hate it. it feels so mean and Max hates it. We literally have to hold his head and force a finger of custard into his mouth. I told her how upsetting I find it but she said we could wait until he's 99 before he takes it himself. We have to teach him and this is how. She again assured us its fine, as once its in he stops crying and swallows it. She explained he will soon realise we are not giving up on this food thing and its something we now just do. She also again told us he will soon click that we're not hurting him, the food doesn't hurt and it actually feels nice, as he's so hungry. She told us to stick to the same flavour of chocolate custard so he gets to know it.

Next we had OT. We had a new lady today, Ingrid. She played with Max and observed him for a while and noticed he is capable of more than he does physically, but he has no confidence. i.e. he wont go down a small slide on his own, even though he can, he asks for help to get up when he can do it himself. He is too careful, whereas other kids his age jump into things with no fear. She said this is common for kids that have been sick, tube fed and had a lot of hospitalisation. Also as Max never crawled (he walked before he crawled) he missed that developmental stage of exploring on the ground, so we need to build his arm strength and confidence.

Next the play picnic...nothing. He spent most of the time trying to get out of the room, crying and asking for his dummy, which we had to take off him on day one. We gave him more custard via the finger and more tears. We were feeling really down at this stage.

Next we met with the professor to discuss Max's progress. She said to leave him on the 200ml at night for now and to continue with the finger feeds every hour! I told her how i dreaded it and she said I'm more upset than Max is. She said if he becomes weak to give him a flush of sugar water (50ml water with 1 teaspoon of sugar through the tube) up to 3 times a day.

Lastly we had speech with Andrea, today we worked on ways to increase the volume of what we can get in his mouth, so to start using a spoon instead of our finger. She said he was ready to take larger portions in the mouth. She also suggested we reward him after each spoonful to let him know we're happy and to relate it to a positive thing, as well as giving him the comfort of a cuddle. We had a few goes of using the spoon whilst in the session, he was so tired and over it all he became hysterical. He cried until he was almost sick, so we stopped and just comforted him. I was finding it so hard to keep myself together and strong in this moment. I could feel every tear and bit of frustration he was feeling.  It had been a full on day and Max was at the point of exhaustion, as are we. Andrea finished the session early due to Max's state and we were ready to head home for the day and get Max to bed when we were called in to see a psychologist. We hadn't seen this lady before and I wasn't sure why we were called in. She observed Max playing for a while and asked us some questions about what sorts of things he likes to play. We told her he likes posting things, putting things together, working out how things work, throwing a ball, cars etc. Max was on the floor with a piece of paper trying to fit it neatly into her bag, he became frustrated that it wouldn't go in and threw it in anger. She commented on his clear frustration of things not going his way and I had to agree this happens a lot. He finally picked it up and got it in and was happy. Then he took it back out and put it back in. She then commented this was not functional play and its not normal for his age. I was/am still, worried by what she means by this. Is she saying there is something very wrong with him? Steve then gave Max his iPhone to play with to keep him busy while we continued to talk with her, and he went straight to pressing the letter keys and saying each letter out loud. She was very surprised at this and I told her he knows almost all the letters, most by name and sound. He has a bit of a fascination with letters. Its not something we've taught him, its just something he's very interested in and takes notice of. Again she said this was odd for his age, made some notes and made a time for next week. I wanted to know what she was writing and thinking, but she said she wanted to see more of him first.
All the way home i was thinking about the big day we'd had, worried. We got Max home to bed and I said to Steve I need to go for a walk. I walked around Graz, thinking to myself ...i think tonight's blog will be titled "disaster day". I then found myself in one of the many beautiful shoe shops and decided I needed some new shoes. Retail therapy I think they call it! There is some great shopping here in Austria, I had just not so far had the time or desire to shop. Well, then I decided I needed some new pants, so buy I did and I started feeling a bit better! On my way back to the hotel I stopped to buy a few little rewards for Max for when he ate, I got him some stickers and thought he could have a sticker each mouthful, he loves stickers.

I got home and Max got up. He asked to watch the smurfs. I told him it was time to feed him so he could watch it on my knee while I gave him some food. He looked at the custard and the spoon and said "yey!" I nearly fell over...maybe he didn't understand me? I put the smurf DVD on and sat him on my knee. I held his head and quickly got in a spoonful and gave him a clap and a cuddle. He didn't cry, he just ate it! I got out the stickers and told him I was so proud of him he could choose a sticker. He chose the biggest one and stuck it on his piece of paper, so happy with himself. He went to get another sticker and I said 'yes you can have another one if you eat another spoonful first'. Now, here's the bit that brought me to tears, happy tears, the bit I'm so excited about....he opened his mouth, took the spoon off me and put it in himself, ate it and said num num num (aka yum)!!! Then he did it again and again and again! He got a sticker each time, a big clap and a happy dancing mummy! Steve and I were both ecstatic. Then Steve said 'do you want some ice cream now?' I murmured "Steve don't push it" BUT Max said 'yey ice cream' went over to Steve, opened his mouth and took it off Steve's spoon! I'm getting all teary again now typing this, we're so proud of our little man. What started out being a crappy day ended up the best day we've had yet!

Go Max!!!! :)


  1. WOW!!!! Hooray for Max!!!! Kirstie, he seems so much more comfortable eating at "home" than at the hospital--not just today, but every day.

  2. Hey! I'm a friend of Andy and Jenni. Jen posted the link to your blog, so I hope you don't mind me reading.

    You guys have all made so much progress in a relatively short time. I'm there with you!

    As a mum, I can feel your pain and anguish (you're an excellent writer). Keept with it - 3 weeks in a lifetime is so short.

    Max seems to have a huge connection with food - the power of stickers heh!!

    Best wishes and hopefully you'll go home with a boy who eats you out of house and home :-)

    Kinza & family