And my beautiful girl is 4 ....!

Hard to believe my "baby" turned 4 this week! Seems strange and - for the first time that I can remember - I actually feel like it's been a while coming. Things have really calmed down in the last year and we've had less hospital appointments, and NEED for hospital appointments so I finally feel able to experience some of what other people experience with their children. That whole "how did we get to 4 already" instead of feeling like "are you sure it's ONlY been 4 years" scenario. When your life is just a neverending screaming/vomiting/non-sleeping/mutilating cycle of events, time seems to have it's own different reality. And I know of other families who suffer this same "variation in time" with their children who suffer similar, yet different disorders. My thoughts are always with them as I remember all too well, the horror that was Alyssa's younger years!

We went to Disneyland for her birthday and she had a brilliant time. We were a bit disappointed to discover that there's no "real" Tinkerbell at the Paris Disneyland (and the only ride she appears on, Alyssa wasn't allowed in because the kids had to be able to climb stairs or ladders in case of a fire), so we had to sort of gloss over that fact for her and just point out her pictures in various places. But she was overexcited every time she saw any of the Princesses and almost hyperventilating when we saw Belle! Cinderella loved the Disney Princess straps on Alyssa's wheelchair, pointed to herseld and said "that's ME!" (to which Alyssa was nodding but speechless!) then Alyssa almost passed out when Cinderella hugged her! :-) We came home with FAR more stuff than we really should have, but her face at all the different designs (Minnie/Princesses/Tink) on various clothes just made us softies buy all the more stuff! Still not entirely sure how we managed to pack them all into our cases and still make it under the baggage allowance, but somehow we did! And we smuggled a lot back, to wrap for her actual birthday!

There were obviously negative aspects of the trip (for Alyssa) though she was thankfully unaware of them. It just seems like we never get a break from some aspect of her pain insensitivity though! It was really cold there (much like what we had in our ice/snow period here over Nov/Dec) despite there being no snow, and her external nerves just do not warn her that she's too cold. Here it was a big enough problem just getting her to nursery and back without her poor hands/face etc swelling up because of the cold, but in a park where you spend roughly 8 hours a day wandering about, she ended up with freezer burn - despite my best attempts to prevent that. The first day she only had it down the sides of her legs, because she fell asleep on top of herself. The following day, her hands were almost twice the normal size while they were "thawing" (even after we spent ages finding and buying a huge blanket and thicker mitts for her size) and her face got it on both cheeks. She looked like she had severe sunburn by the time we got her back to the hotel and ready for bed. The heat coming from her hands and face was intense! And to anyone else, that would have been agony! But she had absolutely no idea any of it was going on. So I guess there are always *some* benefits to not feeling pain. Unfortunately; these are also the warning signs of frostbite, which her paediatrician has already warned me about, and that she is a much higher risk of getting it - without warning - because she doesn't feel it.

We also found it very difficult to stick to her newly-started gluten-free (GF) diet whilst there (despite what we were told before going) and the restaurants mentioned certainly did have a good variety, but our own hotel had only a "buffet-style" breakfast and dinner, and could not / would not guarantee that anything was GF. So we had no choice but to just let her eat what she wanted, and we are now dealing with the aftermath. She hadn't really been on it long enough to know if it was actually helping her everconstant gut pain, but I had initially noticed that she stopped screaming within 2 days of starting it ... which made me hopeful. She was still "sore" when going to the toilet, but not physically screaming like she was being ripped apart. We've just had a fairly horrific weekend where the screaming seemed neverending, but finally seems to be coming to an end again, and we're back to being as mostly GF as possible while we get our heads around everything we need to avoid, and see the dietician again on the 7th March. She has also had a tummy bug too though, so that didn't help .. but am pretty sure the gluten is a bigger deal that we originally thought.

We are seeing the surgeon tomorrow morning at YH, for the first "direct referral" and a chance to discuss directly with him what Alyssa's issues are. I only met him briefly last September just before he performed Alyssa's surgery (which sadly did not work as they all hoped it would) and that was organised via the pain specialist. We were told the surgeon "did have other ideas and suggestions" but - at that time - the pain specialist did not feel that we needed to do anything as drastic or invasive as the surgeon's innovations. That the medication trials he had planned, were going to solve Alyssa's gut/rectal pain. We're now almost 18 months laterl; with several "failed" trials, and no nearer to any solution so am hoping that the surgeon does indeed have some other ideas! And that - maybe just once - something will go right for us. I will be very interested to see what he says tomorrow ... and HOPE it is not "I'm sorry, I don't know how to help her" as we are now becoming used to hearing. :-( Fingers crossed, this is the specialist who will finally be able to help her x