Theo has hit 8kg at last, he's getting closer to 10kg all the time and it's great news!
He is now rolling all over and sitting up by himself and taking his nippy off for longer periods of time than he is allowed but still coping very well. I am going to discuss this with Dr Pandya at his respiratory review - perhaps the weaning from ventilation could move faster. we'll see.
We have managed to make a couple of small excursions and one big day trip to see a new baby, little Rebecca Rose Bennett - how lovely that was - our best weekend in about a year, visiting friends and taking our 3 children with us. Finally, a small sense of normality!
The biggest news of all is that Theo is rapidly approaching his first birthday. There was a time that nobody had much confidence that he would make one month but he has defied all of us and been stronger than we could have imagined. He's made the minimum criteria and things are looking good - so good that he may not be quite as urgently needing the transplant as he once was.
The transplant is still very much at the back of our minds as the critical point in Theo's future and indeed for all of our futures. That is why I am almost aggressively promoting the organ donation register. It is no good thinking that he is going to be alright if we don't actually make the effort to get on the register. Second to that, we have to consider that in order for a heart to become available for our son, we are expecting someone elses baby to die.
On that note, we have decided to throw a HUGE party (as big as our back garden will accommodate) for his big day and we would like many people to attend.
19th July, our place from midday onwards. please get in touch if you havent yet received an invite but would like to be there.
willow
4 comments:
Hi Willow and family,
glad to hear that Theo's coming along with his progress - would you like us to send along a photographer to his birthday party?
Do send me an email at isaac_ashe@mrn.co.uk or give me a ring on 01509 635820.
Regards,
Isaac at the Echo.
I am so upset that we'll miss the party! Please make sure there are lots of photos so we can see all the celebrations when we get back. It is indeed incredible to think how well Theo is doing, developing, gaining weight etc when the outlook was so awful when he was first taken ill. I know he's not out of the woods by a long shot yet, but here's to the future!
willow colin and theo
so please to hear things are going well for you ...
we all miss theo loads here at LRI
big hugs TILLY
Greetings to our cardiac parents from across the globe! How great is is that we have a tool like the Internet to eliminate the distances between us, and afford direct, immediate communication!
We got your note about your concerns with fundoplication and a g-tube. Reading through your own blog, it's obvious our medical journeys aren't exactly the same, but have many parallels. One of the primary reasons we created our blog was to open up our story to anyone who needed it. We found this sort of information so hard to come by, as we prepared for this journey ourselves. In this spirit, we're always open to discuss/support/walk with anyone who may need it. Please feel free to email us with any questions you might have regarding any part of this whole ordeal, especially the nissen/fundoplication. We can be reached at wedehase@sbcglobal.net
The short version of my reply is that I'm not a doctor, and I certainly don't have insight into complications and side effects of the Nissen in regards to Theo. For us, it was a MAJOR turning point in our son's health. Now that we have chosen to proceed with the Nissen, the validity of that choice is night and day. It was, most definitely, the right thing to do. Your doctor's concerns about general anaesthesia seem a little unusual to us, as well, but I'm certain there's more to the story than we're hearing. People go under GA all the time, but perhaps there are more things to consider in the case of cardiomyopathy.
Before the "short answer" becomes long, I'll offer again that you can feel free to contact us directly, rather than posting through public forums. wedehase@sbcglobal.net
- Jason and Tanya
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