It’s been a while since I’ve blogged and so many of you are waiting to hear if Bede is ok. I have been a bit swamped with everything so Bede’s incredible Dad Roy has stepped up and is writing his first blog. It’s exciting to note that Bede had surgery in January that after many unexpected and life threatening complications allowed us to remove the tube from his face and feed him into a tube in his tummy. We’re loving seeing his face! Over to Roy….

 

The last time Izzy wrote she wrote about standing yet again on the edge of a cliff. Well Bede has triumphed he has grown he has developed he is smiling he is living.

The admission in Janurary and through part of February was a long and intense. The close medical management and care and love that was shown to Bede eventually got our family home.

Bede and G hangout at the hospital.

Unfortunately each time we were sent home it lasted no longer than a week and bede was readmitted with more internal bleeding. It was a difficult and all consuming time where each treatment seemed to stir another issue. But Bede did Bede and got through it and levelled out.

Bede with nothing on his face for the first time in years.

Kisses with Dad

slowly he improved

All of this and so much more are also the reasons why the blog has not been updated it has simply been full on.

Bede is now happy not for the passing moment or glimpse we have seen in the past but truly happy, laughing from your stomach happy and he is growing. We are doing rehab 3 times a week, we are singing, clapping, playing and he is even trying to crawl. We are reducing Bede’s medications and he is putting on weight.
Someone said to me last week :   “awww look at him are they steroid cheeks?” and for the first time I was able to say no Bede is chubby.
Bede is telling us when he is happy and when he is not. He is communicating. He is really living.

Morning swims

We have even been out to dinner as a family with everyone happy… theres a first for everything!

More than all of that Bede is part of a happy, together family. We have been at home, at the beach, we have been on ferries to Rottnest island, we go for walks and drives up the coast, we play for hours on end and then we sleep not for 2 or 3hrs at a time but for 4 or 5hrs. Our family feels whole. Our family feels happy. Our family feels alive.

We eat fresh food, take the boys to the farmer’s markets, we are enjoying life

For the first time in along time I feel like Bede has the world at his feet. I feel it his time to grow, to develop to catch up on the things he missed out on and to do the things people said he would never do. This is Bede’s time to live and I couldn’t be happier to be there standing along side him encouraging him and loving him.

Life glows, we couldn’t be any happier to be living this time as a family.

This is also a good time to announce for those of you who might not know that Bede will be reaching another milestone shortly. Bede, along with Gus, will become a big brother to his little sister due in April/May this year.

Bede cuddling into  his sister’s kicks back in January while in hospital.

Thanks for your patience, we feel deeply blessed. – Issy and Roy