Wednesday, 2 April 2008

Small Victories

Hi All,

I'm happy to announce progress on the footwear front!! The obviously flush footwear department of our local HSE Community Care has rubber stamped the purchase of special shoes for our boy's feet! Of course now we wait, as they have to send someone out to actually buy them! I promise photos in 3D when or if they arrive. Although I can't help feeling some kind of residual survivor's guilt for those who may not have been in the inner flush circle on this round Imelda Marcos type indulgent spending! If you know anyone in that situation, still waiting for approval for shoes, please pass on our messages of support.

The other break through, is in the Speech Therapy department! Lets not get ahead of ourselves here folks, we haven't actually been given any service, but we have been given a date for an Assessment of Need. This will merely outline our urgent need for the services of a Speech Therapist, but will then refer us to yet another waiting list, due to the lack of services available in our area! Are you all still with me? We have the privilege of meeting her on Friday, I promise to report in detail on that one, it should prove very interesting.

On a much more tangibly positive note though, I'm happy to report that we are now half way through our first week in almost 4 years without setting foot inside Temple St Hospital! Imagine, our first week since Aug 04 that we have not been in Dublin, we don't quite know what to do with ourselves. This momentous milestone is due to his recent blood results being very good and also to the fact that we said goodbye to his Central Venous Catheter last Wednesday.

The Central Venous Catheter has literally been his life line since starting on haemodialysis in Sept 04. Sited in one of the veins near the heart, it is the magic piece of plastic which gave the team access to Rory's blood for dialysis. Before the transplant, the continued good function of this tube marked the miraculous bridge between life and death for Rory. It had served him very well and really without incident since it was inserted. However, we were not sorry to see it go! No room for sentimentality in this house! Kids who have these can't have baths or swim as this line must be kept dry. We're still waiting for the opinion of Rory's transplant surgeon on him being allowed to have a shower due to his unorthodox urinary plumbing works.

Rory is also back at his Montessori school two days a week. It's such a joy to watch him skip in the door with all of his classmates. He's making slow but steady progress and was even persuaded to sample some yogurt by his teacher! He spat it out before it even hit his tongue, while one of his buddies sagely pronounced that he mustn't have liked the taste! Still he tried it and he didn't vomit or gag like he used to, so I'm officially classifying that as a victory also!

It's fitting, during this Organ Donor Awareness Week, to concentrate on the little victories. If Rory's story has moved you, please consider getting a Donor Card but also make sure you discuss your wishes with your family.

Lets remember here folks, that thanks to an amazing gift from his Dad, a little boy who was born without kidneys is now running round and tasting yogurt!



helena said...

hi guys,
so glad to see rory back at school..
i have not looked at blog in a while but when i read tonight i am crazy with shame that we live in such a country that tolerates such treatment.. i have a letter drafted to the hse, taoiseach,finance,children s ministers and to morning ireland joe duffy gerry ryan but want to check it ok if i send to all of them with ye first..i dont know what else i can do,
which is better (if any)local or national cause will anything change at local level or will it be ignored at national level?
dont know how ye cope with all this and manage to have a sense of humour

fiona said...

Hi All,
Great to get not just one but several positive stories from planet continuous struggle with HSE et al.
Willing that it will all continue in this positive direction!

Fiona G

Véro said...

hi dearest Anita !

Glad to read Rory is back to school and even"try" some yogghurt with the friends ( school might be not so bad after all and it's not because I'm a teacher !)

If you want me to investigate here for Rory's "special" shoes , send me references , size , etc if you need ... I might even ask un podologue about it if you want ?

Send all my love & support to all the members of my favourite tribe .

tendresse + bises

PS : I've already had my DONOR card and I'm really proud of it !