Saturday, October 17, 2009

Happiest birthday photos ever!

I have delayed writing this post in case it was too good to be true but ISAAC IS EATING!!

It was a true birthday present to us as it was only on the evening before that he suddenly picked up a spoon and started stuffing the food into his mouth, On his birthday (Monday, which is when the photos were taken) he continued wanting food and happily feeding himself. There is so much mess because he didn't understand how to keep it in his mouth and swallow.

On Thursday evening Hannah had three leaders from the church youth group to tea and as we were all sitting eating Isaac began to take the carrot and cream puree into his mouth, close his lips and SWALLOW! I'm sure Hannah's friends didn't understand why this was so exciting for us as he just looked like a baby eating but to us it showed the real possibility that he will one day not need a tube.

Isaac is a child whose greatest food intake in 4 years had been (only once) to drink 100mls of milk through a Haberman teat and now he can eat a whole baby tin of pumpkin and sweetcorn (with a bit of coconut cream - thanks for the tip Bronwyn)
This has been real hard work for us juggling the amount of food he needs overnight to keep him healthy with how little he needs to keep him hungry enough to eat.

We spent ten days giving him 500ml of his nutrini energy formula at night and this was enough of a reduction (from his usual 800ml) to get him interested in food but it was only at tea time that he would allow much food in his mouth. Last Friday he was very interested in his play picnic so we decided to be brave and cut the nutrini to 250ml with 350ml water and from Sunday he's made this great strides.
Now we have to decide when to cut the volume of liquid to encourage drinking which is something he finds very hard.

Yesterday at mainly music I was so fortunate to meet a new mum who is a speech language therapist with a special interest in dysphagia (in post -stroke adults mainly but some knowledge of kids) She was able to bolster my confidence immensely. I have been researching the internet like mad and read all the info from Graz clinic in Austria but nothing beats having a person to talk to.

Yesterday afternoon the homecare nurses visited to weigh Isaac. I was very worried about this as I knew he had lost weight and we've been doing the feeding thing off our own back because there is inadequate help here (My friend Louise is in Graz at the moment with her daughter Anika after trying everything on offer in New Zealand).

I told the nurse that the Graz guidelines allow the child to loose 10 -15% of weight and when she weighed Isaac he was 12.4kg (13.1kg a month ago 13.8kg at a clinic visit before that). She just wished us well with the feeding programme and I was so pleased that he wasn't being taken into care or at least admitted to hospital that we had takeaway pizza for tea!!


Anonymous said...

Oh my goodness, that is such fantastic news! I can imagine how excited you are. I love the photos too.
Long may it continue. You guys have done such a great job.
Hugs from Bridget

Mel said...

That is just fantastic! So much progress all at once. Way to go Isaac! I hope he keeps it up :)He looks very similar to how Luke looks when feeding himself- I'll bet my kitchen looks similar to yours after the boys have finished too ;)

Stephanie said...

Way to go Isaac! What a wonderful thing!

Nan P. said...


I am so happy for him, because it is all down hill from now on: as I put it when Cathal acquires a new skill, something "clicked" for him, and he will never loose it.

I am also very happy for all of you, great reward for your hard work.

The photos say it all!

Bronwyn said...

Yeah ha Isaac, you are so clever.
This is great news Paul and Angela a truely special milestone.

Heather McBride said...

What a fantastic birthday gift for you all. Well done Isaac. What a break through, we are really pleased for you. Happy 4th birthday.

Love Heather, Richard and Kristy.

Karen said...

Great to see these photos!! And fantastic that the home care team aren't worried about his weight. Karen :)