Things have been

up and down since I last posted. Alyssa has had good days and bad days, but I'm trying to focus on the good days. She's been much stronger at the last two OT sessions, which is amazing to see - the best she's ever been. She was able to hold herself up on her arms while lying on her tummy, and support herself while throwing balls etc so her upper torso is getting stronger and her arms are better about bearing her weight for short periods of time.

The physio and the hypermobility nurse came out to assess Alyssa for a hypermobility clinic that's starting, and to see if they can help her from that aspect also. They got Alyssa to climb the stairs to the bedrooms (crawling - she can't walk upstairs without help and even with help, she'll only do a few before begging to stop) and then wanted her to come back down them. I explained that she normally crawls down them backwards, instead of dropping down onto her little bum like they thought she might and that she was also quite fearful of the stairs because she fell down the internal stairs in our last house at about 14 months old. She didn't hurt herself (obviously) but she got a fright, and since then has always asked for help with stairs. Her poor balance is an issue and she seems unable to move her feet to come down without toppling straight over, so crawling down backwards is definitely what she has to do .... or, just get mum to carry her down! She was too tired after climbing up them to crawl back down and was getting really distressed at being asked by the physios to come down, so they allowed me to carry her back down to the first landing - giving her only 5 stairs to crawl down. She became hysterical at still being asked to do work but I managed to calm her down and told her that if she just crawled down them, that would be it and she could rest. She asked for a cuddle, so I told her she had to crawl down to me and get one and (after a little gentle encouragement) that worked and she managed it.

Just climbing up and downstairs exhausted her to the point where she was almost sleeping on the couch while the physios and I were discussing what the plan was going to be, and she was getting really distressed because she wasn't in her bed. I actually started getting worried she wouldn't manage to stay asleep long enough to eat lunch, because we had to travel to the hospital that afternoon and I needed her to eat before we left. Fortunately, I managed to get something into her after the physios left, fell asleep and stayed asleep for the entire journey to the hospital as well. Also, saving me the added stress of trying to keep her amused and not attacking herself on the way - something which is obviously not fun, for either of us! Unfortunately, that just meant she was wide awake for the journey home ..... and attacked herself almost the entire way! Mucho stress and unhappy mother and toddler! Still, I'm trying to focus on the positive journey there! Met with various specialists in the last week to discuss Alyssa's progress. Again, a bit of up and down with those but think I'm more in tune with what Alyssa needs and who she needs, from a medical point of view.

Over the last little while, Alyssa has been urinating excessively - mostly at night - and I've been struggling to get her through the night without being completely drenched by morning (and she only gets changed for bed between 7-8, so a 12 hour nappy should be adequate), but I've been having to change her at about midnight just so I don't have to strip her completely, and all her bedding every morning. I also observed that during the chest infection and the resulting 40C degree fevers, she wasn't covered in sweat like she normally is (even on the Thalidomide, which reduces her sweating). The only thing that has changed is the addition of the drug that Dr Axelrod from NY suggested, so I realised that both drugs were having the same effect now.

As I met with the neurologist and anaesthetist this week, I mentioned all of this and proposed withdrawing her from the Thalidomide on a trial again - to see if she could manage to cope from both an itching and sweating aspect, as well as reducing her urine output. We discussed the various potential problems that may occur and all agreed that it was worth trying. We have always been grateful that Thalidomide helped her (and the previous trial of taking her off it reminded us how awful her life was without it, that I was reluctant to take her off it without having an equivalent with less potential side effects) ... but we have always known that it was something she could not stay on forever. There are various potential dangers of being on a drug like Thalidomide (some are - ironically - peripheral nerve damage - which she doesn't actually have at the moment) and although it is always a gain/benefit assessment with Alyssa and the types of medication she is on, if there is a safer equivalent which has the same beneft then obviously we want to use that. So I withdrew her from the Thalidomide on Tuesday after seeing the specialists and am to let them know how she's doing on it. After one night off it, she had a fairly dry nappy when I went to change her at midnight although still had a very full one in the morning and has had varying degrees of soaked nappies since - although still not been drenched since so I believe it is starting to have some effect on that aspect. However, the most important thing is that she has now been off it for 5 days and is not soaked with sweat OR tearing herself apart!!! When I withdrew it from her last time, by the fifth day she was absolutely soaked with sweat (hair drenched and sticking to her, sweat running down her face etc) and she just cried all the time. She was completely and utterly miserable! I found myself begging the specialists to let me put her back on the Thalidomide, just to give her a bit of peace again.

We seem to be at the same point now with the other drug (a much safer alternative!) although it is still early days, but I am feeling optimistic that we may just manage to get her off it and keep her off it. She has noticeably been scratching less since starting the newer drug, she's much more settled and the girls at the family centre she attends have mentioned that she hasn't seemed just as itchy - and sometimes it gets quite hot in there, which always makes her itchier. Now we have to make sure she IS sweating, and monitor to see if the urination continues to improve - otherwise there may be something else underlying which needs to be checked out.

Alyssa's famous Dynamic Lycra Suit has finally returned AND FITS HER!!! So hopefully, that will also help to strengthen her as well as the ongoing OT work (and she looks really cute in her "purple suit" that she shows off to anyone who's interested ... and to those who aren't really!) ;-)

Ok, think that's probably enough for now. It's late (as always) and I think I need to go change her. I am endeavouring to get on here more often again .... it's one of those situations where I really should just update at the end of each "episode" because if I don't, so much happens so quickly that I can't face sitting down to write it all. But I know that so many people out there know about and love my beautiful girl, and are keen to know how she's getting on. And there are women in the US who love her as if she were their own, and they are always waiting for updates! But also - and one of the reasons I do this blog - there are people who have found me and our little support group, because of my inane ramblings about Alyssa. And I am very thankful for that. If I can help save anyone else from going through this on their own, I will be a very happy mommy. And Alyssa will hopefully some day meet others like her.

Oh, and it's her birthday on Tuesday!! She'll be 3 and is very excited about her birthday party and her Tinkerbell cake (she's obsessed about Tinkerbell!). Will post after the birthday and let you all know how it went, and give you insight into why I chose the venue I did.

x x x