More illness

Poor Tabitha has been suffering again with her vomiting over the last few days. For a while yesterday, she was being sick every 10 minutes, which is pretty intense.Today, she has been improving thank goodness. Yesterday, I spent a very very long time on the phone to Karen, who was fantastic. Just being in contact with the outside world during these times can be vital for my sanity, and she offered to pop over today and keep me company as well.

I was pleasantly surprised by Tabitha's reaction to Karen, who she hasn't met before. She was so comfortable in her company that she ended up sitting on Karen's lap, having a cuddle watching tv. I took this picture of them together.

Isn't it cute? Karen's son is autistic and will not tolerate closeness and cuddles at all, which is something so hard to comprehend. Anyway, that made Tabitha's cuddles even more special, and I was so pleased to see her happy and trusting of someone new. She used to hate new people because of her early experiences of hospitals, but I think she is a lot more aware now that not everyone out there wants to stick needles in her. Little by little, she's learning more about people, and she's getting more confidence, which is so lovely to witness.

Evening Out.

Last night, I went over to my friend Karen's house for her official Stampin' Up! launch party. She signed up as a demonstrator in September, and has been beavering away making samples up ever since in anticipation of her launch party, which she timed to coincide with the new catalogue launch.

In return for a small fee, Karen provided drinks and nibbles, and we did 2 make and takes, which I will photograph and add to this blog tomorrow. It was lovely to go out, meet some new people and one or two familar faces, and have fun making lovely things in a great relaxed environment. Some of the ideas Karen has are so fantastic and creative, I can't help but be envious of her talent. I am already planning Christmas tree decorations that she showed us last night, well, I don't have the punch yet that she used, so I will have to alter it to another one that I DO have instead.

Please visit her blog to see more of her work, the samples on display last night really were exceptional, and this lady has worked so hard, she deserves to do well in her venture. And I'm certain that she will.

Rewarding myself

After spending the morning shampooing the carpets, I decided to reward myself by doing some crafting this afternoon. It's the birthday of a friends little girl on Sunday, so I had to come up with a card for her, and this is what I made.

It's in Close to Cocoa and Cameo Coral with Chocolate Chip ribbon. I used my large tag punch, the 1 3/8" circle punch and the scalloped circle punch, and the sentiment is from the Basic Phrases set with the image from Big Bold Birthday. I embossed the cameo coral cardstock with a happy birthday folder in my Cuttlebug.

Little things completed.

It's been a while, to be honest, not a lot to report has happened here. The girls are both in school, no one (for the moment) is sick, and the weather has taken a downward turn :-( I will have to go and walk the dog shortly, but I'm not looking forward to it.

One thing I have done, is get the photographs we needed for our new passports. You see, we have been granted a short break to Disneyland Paris in December (Christmas at Disney, how exciting!), and my passport had expired in 2003, and the girls had never had one. Trying to get a photograph of Tabitha with a neutral expression, looking straight at the camera, against a light background.....not easy! I hope the passport office accept what we managed to get. Also, we haven't told Ellie anything about the trip yet, she would drive us round the bend, so trying to get it done of her, without explaining why she needed to not smile at the camera, tricky! Still all done now, and tomorrow I will be sending the applications off. Fingers crossed all is ok with them.

Another thing I have achieved, I have complained to the PALS team about the Registrar we saw. I often get wound up about things, but don't take any action, but this time I have. They asked me what I hoped to achieve from the complaint, to which I said I wanted the guy to listen to parents, not throw potentially life-limiting illness into a consultation that had no baring on what was being discussed, and not spend all his time obstructing me from speaking to the Surgeon, who has actually met my child, operated on her, and knows her pretty well. I now have to wait for the outcome. I feel better knowing I have raised it now though, even if nothing does come of it, there will be a question mark over his manner in any case.

Change of plans

I was due to meeting a friend for lunch today, but unfortunately this morning, she sent me a text message saying she wasn't feeling well. I pondered what to do with the spare time for a while, should I tidy up, do some more cleaning, washing maybe? In the end I settled on having a play with my lovely new craft goodies that arrived yesterday :-)

My latest order was comprised of all retiring Stampin' Up! stock. Well, the colours are changing, and with ink pads at half price, the offer was too good to miss. I got some coordinating cardstock too, again reduced, and a whole bunch of punches. When I brought in the (rather oversized) box from the car last night, my hubby didn't say a word.....he just gave me a 'look'. So, to try and make up for my expenditure (which was hugely reduced due to the fabulous offers), in the extra time I had on my hands today, I made him this.

The main colour is Almost Amethyst, with Pale Plum and Sage Shadow. The stamps are 'Happy Everything' and 'Basic Phrases', with the heart coming from 'Simply Said' and I added a couple from the Tiny Tags set.

I haven't given him the card yet, but I can't wait to surprise him :-)

Follow up

Having spoken to my contact at the hospital about what happened during our last appointment, I am now awaiting a complaint form so I can notify the people who need to know, that the guy I saw needs to be watched. Hopefully he will be and they won't just 'file' my complaint.

Last night, I made another card. I have lots and lots of crafting kit now, and I can't justify the expense if I don't use it!! This card is in Cameo Coral, and Ruby Red, with Close to Cocoa and More Mustard ribbon. Its yet another Big Bold Birthday example.

It's a bit plain, but I quite liked it.

A quick mention for my girls. Both of them are doing very well at school this year. Tabitha has to cope with a whole new group of children, and is doing so fantastically well. Ellie has all the same children in her class, but a new teacher, and this one seems to be firing her up to learn again. We got to school ridiculously early this morning, as she was so anxious to get in and get started. I hope she will be able to recover some of the ground she lost last year.

I have to tell you this, and ask a question.

We had our appointment at the hospital on Thursday morning, and to be honest, I was disgusted with the guy we saw. With all of Tabitha's issues, I like to see the people I know with her, so I now they know her background and her issues, and I went up to Out-patients expecting to see her Surgeon. We actually saw the Registrar. Who knew nothing about Tabitha, her syndrome, her history, and suggested a totally inappropriate regime to cure her intermittent constipation problem. At that point, I kind of switched off to be honest, which is not the best thing to admit, but when I know what works, to be told to increase the medication by a factor of 6 and then titrate it down (with the guy explaining to me what titrate means, if he knew me at all, he'd have known that was a major part of my old job). My word, if I upped her medication x6, she'd explode!!!!!

So, there I was, listening to this guy telling me what I consider to be the biggest load of rubbish, for him to look at Tabitha's rather substantial notes, and then suggest that she be tested for Cystic Fibrosis. Ok, so from nowhere, you have linked some constipation and vomiting, to oxygen dependancy, and come up with a potentially life threatening and life limiting condition. Given Tabitha's long term relationship with the Respiratory Professor, and the Gastroenterology team, and her full genetic screen (which showed her deletion fully, but failed to show any other anomalies), to suddenly suggest this sort of disorder is completely inappropriate. Another mum may have been completely freaked out by this suggestion. I shot him down in flames, told him her genetics showed nothing of the sort, and waited for the next shot. He then went on to tell me how busy the Surgeon was, and how he would speak to her, and if I could wait 30 mins he would tell me what she said. I decided I couldn't wait that long, and I'd rather receive a letter telling me what she said, as a way of getting the hell out of there.

I am still pondering what to do. This guy seemed to know next to nothing about what he was telling me, and I'm worried that could be dangerous to someone. Do I take it further?