Weight: 11.
The past while has been a really trying time for us as we let Tayden explore new tastes and flavours. The problem is that the little monkey has lost interest in drinking which is a major problem for us! Over the past while his drinking has become less and less, to less than 100ml on some days. Obviously this is very worrying, his body needs at least 500ml liquid a day to function properly so you can imagine we have been in quite a state.
We had a stressful evening in Somerset East last weekend where we were sitting in 36’C heat and Tayden was not in the least interested in what we were offering him. From putting him in the bath where he could “drink” water to offering him a wide variety of drinks, nothing was working. At the end of the day he managed to eat about 100ml of ice cream so that kept him going. But he was quite pap and Rob and I were very concerned. We left SE at 6.30am the next morning, just to get him home and into his normal environment in case that was part of the problem.
Talking about his natural environment, the day before we left for SE he slept through without one nightmare. We were beyond excited about that!!! That one day and night in Somerset East, out of his routine has seen the nightmares back in full force, much to our dismay. We are now averaging about 3-4 screaming sessions / nightmares a night but it is getting better as they don’t seem quite as bad. I just feel so helpless for him. I consulted our paed about it last week and he said that if he doesn’t settle, we will need to put him onto Risperdal. Now for me, that just isn’t an option. We will do without our sleep before we put Tayden on such a major medication.
We took Tayden through to his paed on Tuesday this week when we were on day 10 of reduced drinking (200ml or less), about day 7 of 100ml and less. The good news was that he wasn’t dehydrated but we do need to keep an eye out for it. It made us feel better knowing he is okay but nobody can tell us how to actually increase his drinking or offer any suggestion that we haven’t tried as yet. Dr P suggested that we try more adult tastes for him since he doesn’t like sweet things. So off we went to the local Spar and bought up a storm to try and encourage him to drink – from non alcoholic beer, Roses Lime Cordial, ginger beer, ginger ale, peartiser, iced teas etc. Must admit that it felt REALLY weird packing this beer into his little suitcase all ready for granny the next morning, not to even begin to mention the look of granny’s face when she saw his drinks for the day! Heheh!
Tayden has really taken to exploring new foods in all kinds of ways, including dumping them all over my kitchen floor! Tuesday night saw a 2kg bag of rice dumped ever so nicely on the floor and then when we came to investigate the sound he promptly started throwing it as fast as he could, in call directions. Impressed? Not likely! The following morning he took up where he left off and sprinkled the floor from one side to the other with custard powder. Grrr……
Tayden is due to continue with his OT this weekend and into next week, with a lot of sessions planned for the middle week of December. We are hoping he will enjoy them a bit more, last time he was not impressed. Madri will be coming through to our house this Saturday to see how he is doing with his jungle gym as I have told her there isn’t much interest on his side. From a distance yes, but not very keen to get onto it and actually use it.
I still need to find a speech therapist but decided to hold off until January, there is no use starting now and then having to stop again for Christmas. It will just cause an upset in the routine so let’s not upset the apple cart for now. He has started saying a few more words – including mom (yay!), star, car, moon, “eze” (please), up, bar (Barney) and boem (broom). So that is great, at least the vocab is increasing although a bit difficult to know what he is referring to. He said his first two word sentence this week as well – boem eze (broom please). So definite progress there without even any speech therapy!
Tayden is having his peg coming out party this weekend, Barney themed of course, and it is going to be great to see everyone of his little friends again and just chill! Everyone is so keen to see him eating and drinking in action and we hope that he will get into the spirit of things and show how well he is doing. We are doing it the traditional
On a good note, two local papers are interested in a follow up story on him and Carte Blanche will be rebroadcast on 3rd January. How awesome is that!
Lastly, flavours of the day at the moment include: dry bread (I kid you not, if you add anything he wont eat it!), granny’s pumpkin fritters, fish cakes, crumpets, still Pombar chips (eeeck – last ones from
All in all Tayden is doing well and we just love watching him progress every day!