Wow, it's over a month already!!

It's a month since I last posted, that's just crazy! But things here have been a bit crazy! The move went well - eventually - there were a few hiccups and then a fair amount of back and forthing between the two properties and trying to sort out Alyssa's difficulties over two houses was not easy, so we stayed with mum for a few days! Mum's are handy things! ;-)

Alyssa LOVES the new house!!! :-D And the fact that her cousins can come to visit now we live in the same village again, and they can play in her room! It's so nice to see Alyssa getting to do "normal" everyday things that most people take for granted, I almost can't put it into words really! To have a child who will actually play with other children for a little while, instead of me having to supervise her constantly to make sure she is not injuring herself - deliberately OR accidentally - is nice not only for me, but good for her developmentally! Of course the fact that her cousins are 11 means that they are old enough to know what to watch out for, her younger friends are never left "in charge" of her! ;-)

Dr Axelrod (NY specialist in Autonomic Disorders) replied to my e-mail about Alyssa's strange pain reactions and said that "sometimes when the pain fibres are missing, the touch fibres are ultrasensitive in their place." So it's very possible that because Alyssa is feeling no deep pain sensation, her light touch / heat and cold / itch sensations are all hyper to make up for the fact that she is not feeling pain. I presume that this will still fit with our own neurologist's theory that because Alyssa does not have any pain to compare most things to, what she does feel is exaggerated - like the gut/rectal pain. This feels excruciating to her because she has never bumped her head (and felt it!), or had a toothache (again, and felt it!) ... so she has no pain comparison charting like most of us. It's a theory, but a workable one!

The special bed was a huge hit at the childrens' hospice! She really liked it, after an initial wariness but the girls there were brilliant with her and really made it fun for her to try out. My only issue with it is that it is a fully enclosed padded "room" with no mesh/pvc window for her to see out, or me to see in (and see what she's getting up to!) and the cctv monitor will have to be placed directly above her if I am to continue monitoring her as I do now whilst she is asleep. But it is also meant to last her for a long time and I would like to try and make her life as normal as possible, and that also includes being able to see out of a bed - even if she can't actually GET OUT of it by herself! She's perfectly happy in her cot at the moment, it's just getting dangerous for her because she's getting her arms stuck through the spars with her arm restraints on. But again, she can see out and all round her. The rep for this special bed is supposed to be coming out to see me on 8th May and I had planned to ask him then if it was possible to create a pvc or mesh window in one of the walls ... but I suddenly realised this morning that he is probably flying up to see us. If this is not a possible option, then he will have wasted a journey and that seems very unfair! So I left a message for the complex care nurse this morning, and asked her to try and find out before the arranged meeting and that will hopefully make life easier for us all.

We are currently now onto finding funding for the special "padded room" for her, including it's sensory accessories. I am doing a sponsored hill walk with a few friends - any more volunteers to help are always appreciated! - in June, which will hopefully raise some money for this and am still awaiting some reimbursement funding from the NHS board, for the consultation fees we paid for in New York.

We did get some brilliant news recently however!!! The local police have a charity ball every year and have individual causes nominated by anyone who thinks they could benefit from some funding, and Alyssa's plight was put forward by a family friend. Alyssa was picked as one of the causes to receive some of the proceeds, which we were absolutely delighted about! I have just received an e-mail (and today, a phone call!) to say that there will be a presentation on the 24th May, where the Police Commissioner will present me with a cheque! This is absolutely awesome of them, and I am just so grateful!

I had already asked if Alyssa could attend also and I was told today that they would be delighted if Alyssa could make it! :-) They were not sure if she would manage because of her health issues, but it's an afternoon presentation so I shall just try to put her down for a nap a bit earlier than normal, so we can appear together at 2pm. The lovely woman I spoke to on the phone today said she would not tell me how much the amount was, that it would be a nice surprise on the day - but ANY amount is very greatly appreciated! Hopefully it won't be too long before Alyssa has not only a safe environment to play in (and kick off, when she's feeling frustrated!) but also one which will address her many sensory issues. The OT is getting a bit excited about designing Alyssa's sensory room lol! ;-)

The food diary really just showed that the things we thought Alyssa wasn't coping well with were fairly spot-on unfortunately. She has definitely improved in regards to the things that were causing her to have diarrhoea, since the probiotics but as far as those things that were slowing her guts down and making her constipated - or causing gut "shut-down" it is mainly dairy foods, as suspected. She loves the mac n cheese from the bakers and I usually get her it on a Thurs as a treat for working so hard at OT, but there is now no doubt that her guts just cannot handle it. She is unable to poop for at least 24 hours afterwards, has horrendous gas/wind and complains of a sore "bum" constantly ... then is unable to sleep because she is so uncomfortable. As always, her dairy intake will need to be restricted. I am reluctant to remove it completely from her however, it was one of the biggest changes in getting her from "Failure to Thrive" to where we are now and I'm not in a rush to be back at that point! She is soooo much better than she was even this time a year ago, and dairy intake made a big difference to that. So I shall continue to limit her dairy intake to little amounts, and make sure there is always a big intake of fruit and veg before/during/after it to help her guts compensate for the dairy load. It seems to make a bid difference if I "pre-empt" a dairy overload!


She has a review of her special dynamic orthotic suit next week, so will be interesting to see what those guys have to say. The physio is currently looking into hyrdotherapy for her (at a temperature she can tolerate) and is also reviewing her this week at the Family Centre, before drawing up a plan for the girls there to follow. OT is taking a break, to allow Alyssa more developmental and play time with the other children - in the hope she will start to interact more with the children instead of just the adults - but is not "leaving us" by any means. She will be back with more exercises etc in a few months, once Alyssa's new home and transition to nursery are over with and Alyssa has shown she's coping well with the change. I showed the OT some pictures that I have been taking of Alyssa in her bed, with the awful positions she can get herself into and she was horrified! She asked if I had shown Alyssa's paediatrician, but I have not as yet - am merely documenting them for when she returns from holiday. The OT feels I am doing exactly what is required as these are positions that nobody should be able to lie in, and we are all worried about the longterm damage. It's a case of "just because you can lie like that, doesn't mean you should lie like that" because of the pressure and strain she's putting on her joints. Dr Axelrod advised that I should never allow her to be in positions that I would find uncomfortable, because she does not realise that she is damaging her joints. I would struggle to even get into half of the positions Alyssa does, and I was pretty flexible when I was younger! It's not just as bad during the day because - with prompting - she will sit/lie properly if reminded frequently (as long as she's not too tired!) but during the night it's much harder to stay on top of, if I want any sleep at all! Hoping that between the paed/physio/OT we will be able to come up with some way to keep her safe overnight!


Ok, rambled on long enough for one day! Will update again soon! :-)