Weight: 11.70kg
All l can say is what a night! Our last 3 evenings with Tayden has been very stressful, he has been crying and fighting in his sleep and we have been told he is probably dreaming about the events of the day. There is nothing quite as scary as being woken from sleep with a blood curlding yell, screams and a very unhappy little man...shame, even the lady next door to us asked us this morning if Tayden was okay, it seems that we weren't the only ones he was disturbing. Oops...
Prof Scheer has told us that he is probably dreaming but might be hungry as well and if he does this tonight we need to turn on the lights and sit and start eating, no matter what the time is. Heaven help me, l feel all l am doing here is eating! Our room has little food options at various levels to try and tempt Tayden but he doesn't seem impressed with my choices so will have to try some different snacks for him!
This morning he started off well, eating some cereal and drinking his ever present water and we are just so proud of him. My descriptions may sound as if it is very easy for him and that he is doing it without any issues but every day is a trial for him and he is managing with everything so well!
He walks through the ward with a little swagger, his little 'elephant on safari' bottle in his hand and tells everyone 'bye' and waves to them as if they are long lost relatives, whether we are coming or going or just going to the TV lounge!
We have always said that there is something about him that people just love, and each and every therapist and doctor have told us what a joy he is, how much they are enjoying working with him and what a little character he is. He and the physio Eva have really hit it off well but as l say she doesn't take any nonsense from him at all! She says that he is extremely stubborn (where on earth would he get that trait from?) but she can read him like a book and can see the way his little mind works. We have been told time and time again that he is bright, everything is fine developmentally and that he needs to realise he must start eating. They have also said until he does that, nobody will be able to change his mind. They can try but the final decision is his. We agree with this, the decision to eat must be his.
This morning we started with OT, it went quite well until Ingrid tried to put Tayden in a swing and he started crying and wailing and was very upset. We have been told and witnessed that his gross and fine motor skills are 100%, but his sensory receptors and tactile workings are basically in overtime at the moment, trying to process too much, very sensitive etc. We have been told that we will definitely need to continue with the OT at home and that it is important for him to climb and experiece different levels, surfaces and textures during walks, on stairs, when playing etc. Ingrid pointed out again that he is very aware of what needs to be done (eg. getting off the mat onto the floor) but he is nervous and because he doesn't go down on all fours or into a crawl position like other children usually do, he is more aware and scared of falling. We are working on this with him, but it won'T come right overnight.
Next on the list was Speech Therapy and either Rob or l were allowed in the room, not both. So Rob was the parent of choice by the therapist today (think I looked exhausted after being up all night!) and l sat in the passage with Jill and Bruce while Jason had OT in the room next door. Our boys took turns screaming, Jason at OT and Tayden with the speech therapist. The speech therapist was trying to feed Tayden HIPP (like Purity) fruit and forgot that l told her he has a huge ulcer on the inside of his top lip which must have been burning like hell with that fruit. Needless to say the threapist, Rob and Tay were covered in purity fruit and we had one unhappy little guy. As we know, if Tayden doesn't want to eat, even the most gentle persuasion is not going to do a thing!!
The psychologist was next and Tayden made his beeline straight for the clown again! He is both fascinated and terrified by this bizarre huge puppet clown that is able to eat and drink (come now...you don't honestly think that this clown couldn't eat did you, not the clown of a FEEDING UNIT???). He sat and played and we answered more questions about his feeding and routine, his little friends and socialising etc.
By this time Tayden was beyond tired and we considered skipping play picnic for him to have a sleep as we didn't think we would be able to get much accomplished there with him so upset. Our plan was also only to get him there for 30 min max at the beginning of the picnic to allow him time to get used to the people and the vibe as well as seeing everyone eat.
We were on our way up when we met Eva who took Tayden and said if he has enough energy to perform (aka tantrum!!!) like he is now, he has enough energy to eat so off we went to play picnic! (you will note that we don't argue with Eva!) It was the dad's turn to do play picnis today and Rob and Tay sat with little Christina and her dad for the positive influence that the psychologist though she might have on him. Right on cue Tayden started crying about 5 minutes into the picnic. He wouldn't settle and l was summonised into the area where he settled onto my lap and watched the world go by and then....
...he pointed to the noodles and grabbed two with his hand, popped them into his mouth and chewed and swallowed them. And then he did it again. And again. He sucked, chewed, mashed and threw (let's not go there) cabernossi and chocolate umbrellas, he ATE spoons of custard that Eva fed him and we were the last to leave the picnic. He sat on my lap and chilled, drinking from his little water bottle and sat like the little king of the castle surveying all his other subjects attempting to eat. He was COVERED in food, he had rubbed chocolate onto his tummy, in his hair and all over his clothes, but he had eaten. We made a major break through today!
We saw Prof Dunitz this afternoon and she is very pleased with Tayden. She says he is in the Top 20 % of the program of kids eating and we actually cannot expect this week to have gone any better than it did. She told us that Rob and I are doing a great job and are not forcing him but rather encouraing him to eat. We were apparently being watched during play picnic (that damn one way mirror!!!)
We were once again told th have food available at all times (I am beginning to feel like a mini mobile take away!!!) and that we need to eat more in front of him (is that even possible?LOL...).
We have play picnic again tomorrow at 12:00 but other than that we have been told to get out of the hospital environment for Tayden (as they can see he is starting to get stressed and the nightmares are evidence of that), we have been instructed to go out and get him ice cream (I swear, that was an instruction, I couldn't believe it either and anyone who knows me well will know l hate ice cream!) and go out, enjoy Graz, go out to eat and ensure there is PLENTY of food and many options available to him. I will pop down to the BILLA shop again, as it is closed on Sunday and l will need to stock up on snacks for my little man.
Rob is coming down with the flu and ever so glad that l packed the Med Lemon, he and Tay are taking an afternoon nap so l will go out, take a break and enjoy the sunshine! - and of course get even more food and choices for this little man to enjoy!
Tomorrow we will meet up with Jill, Brue & Jason and do as we have been instructed to - get out of the hospital and EAT! LOL...
If you are reading this, please drop us a comment, sometimes I feel as if I am typing this to myself! Hieiehe!