Tuesday, January 10, 2012


Tuesday 10th January 2012, day 9 of wean. Last night after I'd written my last blog, we all had tea on the floor mat, our own 'play picnic'. I'd made spaghetti bol, as Max had shown interest in it before. Max went straight to his plate and dove in! he was playing with the pasta and sucking on the meat. We think he may have actually eaten some too. He seemed to really love the taste and sat and sucked on spoonfuls for over an hour! He was even opening his mouth wanting us to feed him! We were so excited, we felt like it was a big break though! After a while he lost interest so we got out the ice cream and let him spoon some into his own bowl. Again he started spooning it in his mouth and was eating and swallowing it. He was also saying 'mmmm happy happy!' He then went to bed happily and we started his 300ml tube feed. We were so so happy with this. Steve and I chatted for ages about it once he was asleep. Steve suggested he might now really be feeling the hunger and maybe he's worked out eating makes him feel better. I hoped he was right.

Spaghetti with Daddy

Max sucking the pasta

Max woke earlier than usual this morning and I knew it was because he was hungry and thirsty. I got him up and offered him a drink of juice or broth, to both he yelled 'no!' and kept asking for a drink, I knew he wanted water but I stuck to the new rules and didn't give in, as hard as it was. He grizzled all morning still asking for a drink and i kept trying with the juice and broth, still no luck. We got to the hospital and he ran away from us into the waiting room where there is a water cooler, he approached a man and asked him for a drink pointing to the water. The man gave him a cup and Max pressed the water button, filled his cup and sculled it! He then hid behind a chair to finish it off! God we must have looked like awful parents when we went to take it from him, he was clearly desperately thirsty!
We then went to our first session for the day with Eva the physiotherapist. Eva was wrapped when we told her about his eating the night before. She said if he eats something then we can give him some water with some calorie powder in it, that he cant see or really taste. Also for the fact he had not drank anything at all, except his sneak at the water cooler, he needed some fluids.  So we gave him some water with the powder and he drank it happily. Eva then gave Steve some puree and told him to hold Max and spoon some in Max's mouth with his finger again. Again Max put up a fight and protested, but he didn't get up and move away so she said for him to keep going. Steve managed to get about 5 fingerfuls in and Max then seemed to have a bit of an energy surge and was quite happy for about an hour. Eva told us to do this again at home as although he's protesting, he will soon work out that it made him feel better. I find this really hard to watch and to do myself. Max puts up a fight and we have to briefly hold his head still and force it in his mouth while he's crying. As soon as its in we let go and hug him and tell him its OK and he's doing well. He seems happy enough to move it around his mouth and swallow it and he stays on our knee and likes the cuddle. Eva assures us its OK and part of this second stage, if he gets up and walks away or becomes extremely upset, we stop.
Play picnic time and Max ate nothing! He touched a few things and drank more of the calorie powdered water. Eva had even gone and got some spag bol for him after hearing about the night before, but Max wasn't at all interested. Its so frustrating, we had high hopes he'd made a break through. I knew he was hungry as he is all the time moving his mouth as if he's eating and he was really whiny and short tempered all day.
After the play picnic we met with the Professor to discuss his progress and she dropped his tube feeds again! I was a bit concerned and reminded her he had only been dropped to 300ml yesterday and today he is really feeling it. She said to drop him to 200ml and assured me he'd be OK. She said they are really happy with his progress and the faster we drop the feeds the quicker he'll eat. She explained if its dropped at a slow rate the child's stomach quickly shrinks and they become comfortable on a small amount. She told Steve and I she had faith in Max and we needed to too. I do have faith in him and in the program, but its so hard! Max has now lost 1kg in the 10days, they weigh him every day before the picnic. He is also looking pale and is less energetic. I have to keep reminding myself that this will only be a short time in his life and he wont even remember it and its just what has to happen to get him eating.
When we got home to the hotel this afternoon he went straight to the freezer and got out the ice cream and wanted some. This is great that he is asking for food himself! I gave him some in his special bowl and he sat with it, took one teaspoonful, had a suck on it for a while, then lost interest.

Ice cream!

 He went down for a nap as I prepared a feast for our diner picnic. I had more spag bol, mashed potatoes, rissoles in gravy, meat balls in sauce, as well as some ice cream and chocolate. He woke up just in time to be able to smell it all cooking and I told him mummy had made him some spaghetti and some ice cream and he ran out saying 'yey!!' but again nothing, he just wanted some water. He's just gone to bed for the night now and has started his 200ml feed.
This really is an emotional roller coaster for us as parents, so many highs and lows! I guess I thought that once he started to eat he'd continue to eat more each day. Last night he did so well but then today, not so much. Lets hope tomorrow he has a great day!

1 comment:

  1. Kirstie, it brings tears to my eyes to hear about him feeding himself and enjoying it. I know that you're feeling so anxious about him, but from an outsider's perspective, he's making HUGE progress!
    XXOO Jane