Where we are now ...

Wanted to make sure that the businesses who I've had posted for the last few weeks, didn't disappear and the "news" section is automatically deleted from the history as soon as I update it. So I'm just going to copy and paste the really lovely people here, who helped us with our fundraising in one way or another.

* Premier, Tron Court, Tullibody

* Tron Cafe, Tron Court, Tullibody

* Michael R More, Main Street, Cambusbarron, Stirling

* Matz Motorcycle Training, Springkerse, Stirling

* G Johns Newsagents, Cambusbarron, Stirling

* Broadleys Veterinary Hospital, Springkerse, Stirling

* Central Pharmacy, Tron Court, Tullibody

* Mim's Market, Main Street, Northfield, MA, USA!

* St Saviours Church, Bridge of Allan, Stirling

* Prudential and Capita, Stirling and Reading, UK

* First Choice, Stirling - special thanks to Deborah!

* Stirling High School

as well as many exceptionally lovely individuals whom contributed their time and services, as well as their finances! :-)

Met with Alyssa's paediatrician today for a quick general review, and go over the necessary paperwork I'll need for the trip to New York. Was a pretty good meeting today and we discussed the various aspects of Alyssa's problems - her posture and walking issues, her itching, gut pain and general comfort, her medications and the changes likely to happen in the near future, her diet and how well she's eating now (yay!), and obviously New York. We also discussed the fact that Alyssa's speech has clearly improved since last time we were there, but that I have also referred her for speech therapy as well. Quite where I am going to fit in speech therapy is another matter, but one I'll deal with once home from New York.

We also discussed (again) the surgery that Alyssa's having this Thursday at Yorkhill Hospital and debated the likelihood of it actually helping. It's still not exactly completely clear what is actually causing her pain - ie if it's the nerves in her digestive system that just aren't working properly to help propel things along, or if there is a physiological aspect which makes bowel movements seem impossible for her. She has had two previous endoscopic procedures and nothing abnormal was noted then, but she presented as a very different little girl back then and this was not something they were investigating - just any inflammation and a reason why she'd have so much gut cramping at that time. This small procedure may help ease her bowel movements and - if so - would make a huge difference to her daily life.

So we can only hope it helps. I am usually pretty good at not letting my hopes get built up for anything "trial-like" like this, where we have no idea what the outcome will be, but I have to admit that I already know I'm going to be gutted if she's not more pain-free after it. It's so hard to watch her every single day straining (sometimes to the point of screaming) and telling me how "sooo" (sore) she is. But there are really no words to describe how awful it is to hear her little voice over the monitor - every single night - crying "help" and begging for me to stop the pain! And then having to listen to that for an hour or two until she finally gets so exhausted that she falls asleep. :-( Logically, this procedure should help ... but we've had so many things which should have helped her - logically - but didn't, or backfired ... so I shall try to contain my thoughts and just wait to see what happens.

She's stomping her feet a bit more obviously again when she walks (and Alyssa's paed pointed out that she noticed it more clearly today too); and one foot is more turned in when she walks now, so she's falling over quite a lot again. Not sure if this is still a proprioceptive problem, or another physiological reason - her hypermobility and low muscle tone do make her pretty accident-prone, and are probably contributory to it all. Her posture is still pretty much the same, and she still has to be reminded to keep her head up off her chest when playing - plus her hypermobility still makes feeding herself with cutlery difficult, but the OT was hoping for solutions round that. Her heat and cold issues seem heightened again and she is once more screaming when put in the bath, and bracing herself for entering the waer. Hoping the specialist OT in New York can help me with these issues.

Ok, rambled again for longer than I meant to. There's always just so much to cover when I finally manage to get on here! Will post again once the surgery is over, and I have a rough idea of how she's doing post-operatively.

It's been a pretty good day!

Had what I believe is a fairly "normal" day (ok, if you discount all the medications, 2 x 30 min sessions of TSE and the usual - for us - tearing of skin) for a SAHM! :-)

Took Alyssa to the Family Centre, did lots of housework then picked her back up and put her down for her 3 hour nap. Got her up, had dinner and then we played in the garden, and visited her nana! She was pretty sore tonight because she was a bit constipated again, but all-in-all it's been a pretty good day! Yay for the good days! Yesterday, we went back to the "shows" (she's been asking 10 times a day since we were there last!) and I also took my niece with us. They had a blast. It was a lovely sunny day, and we had a really good time, then both slept in the car for a bit. It's so sweet to see how Alyssa adores her big cousin, and vice versa!

Ordered the portable version of the Baby Wipes Warmer today - the Travel one, that comes with a car charger as well as the house charger ... so can use it at her changing station in the bedroom overnight if required as well as taking it with us on day-to-day places. That will be a big plus, the stationary one is already making a big difference to her life!! And she really doesn't want to be touched by any wipes that haven't been in a warmer now - which I guess is understandable considering she feels like they're hurting her when they're cold.

I've e-mailed various people this week to ask about possible ways to fund a trip to New York to see the specialist I'm hoping can help Alyssa - or at least finally give her an "official" diagnosis. We've been in contact with her for a couple of months now, but it's only now after reading her letter that I'm sure I need to get Alyssa there. But first I need to figure out the best time of year to visit - when it's not too hot or too cold - and also how to raise the money to have her treated if necessary when we get there! If it was Europe, then the NHS would automatically fund it, but because it's the USA it's not covered by the EEU rules. I believe a special request can be made to have treatment covered if none is available in the UK ... but am awaiting confirmation of exactly what can be / is available ... and if any special provisions are required. One of the people I've contacted is on holiday at the moment, so she will hopefully get back to me in a week or so ...

If I discover I have to raise the money, then I shall start looking back into various events like the sponsored run I did recently for the hospital that Alyssa attends frequently. I raised over £1300 which was awesome, and was really grateful to everyone who sponsored me - it was hard work, but my baby (and all the other children who benefitted from the things they buy for the hospital with it) is most definitely worth it. I shall just have to work a bit harder, and do more sponsored events ... and hope that the same (and hopefully other) lovely people will continue to sponsor us to get us there. I will even look into media attention if I find it is required! Those of you who know me know how much I hate any form of recording equipment! But - again - if it will help raise money for Alyssa, then I'll do it.

Today was the big conference at the NYU (New York University) Medical Center, which I'd originally hoped to be at - for all the parents of HSAN (Hereditary Sensory Autonomic Neuropathy) children - but couldn't because of the extreme heat there at this time of year. Most of my contacts were also unable to go this year, but one is and is taking her video camera. She is planning to record all the important segments of the day, so we will hopefully hear what transpired there ... and perhaps even get a copy of it.

Anyway, just checking in to let those of you who read this know that we've had a fairly good week this week. Here's to more of the same!

Oh, and Laurie - if you're reading this - I still haven't been able to contact you via the link you left me when you commented. PLEASE e-mail me so I may get your story! Thanks