Update

Things seem to have been more hectic in the last few weeks than they've ever been, but that's probably just because I'm living them now so my perception is that it's that way. Alyssa did get over the chest infection, but ended up getting another bout of illness - runny nose, fevers, wheezing, vomiting etc that looked like it had come back. After being checked out at hospital, the consultant we saw said she was happy that it was not a bacterial infection on top of a viral one this time round and that she felt Alyssa had another viral infection. She said that we might just have to deal with Alyssa having wheezing issues each time she got a virus - due to our family history of asthma, but I'm hoping she just hadn't fully recovered from the previous respiratory attack and was just having a minor relapse. I most definitely don't want or need asthma on top of everything else Alyssa has to deal with.

When she was given antibiotics for the chest infection; I noticed her finger nails were brown but to be honest, originally just assumed they were covered in blood - because she always has some degree of blood both on and under her finger nails, from scratching and tearing at her skin. It was only when I tried (unsuccessfully) to clean them over a period of days that I realised the brown colouring was the surface of the fingernails themselves and - when pressed too hard while trying to clean them - this layer was actually peeling off! This was a bit confusing because it's never happened before, but didn't seem to bother Alyssa and as she was already on antibiotics (as well as having so many other things to worry about, with her not well) I didn't really give them much thought - other than making sure there were no edges she could get hold off and annihilate herself! However; most of her nails have since fallen off and although she is growing new ones underneath, I think I should probably find out why it happened. I know that osteomyelitis (bone infection) is a huge concern in children that don't feel pain, because it can spread quickly to joints etc and cause real problems for them that go relatively unnoticed. As she was already on antibiotics, I wasn't too worried about that - there was no redness or swelling at her fingertips so I'm sure it's not that serious, possibly just some kind of viral reaction but one I shall also get checked out now.

Her mood has been very low since I last posted. She isn't having just as many full emotional meltdowns ie to the point where the world has ended over practically nothing (such as me wanting her to walk 10 steps, or pick up a sock she's dropped on the floor etc etc) but she's just stayed relatively miserable most of the time. She tells me constantly that she's "upset" or "sad" but can't then go on to tell me why she's sad or upset, but she still cries a lot of the time and is difficult to entertain these days. Most of the things which she really enjoyed previously I am now struggling to get her to engage in, her favourite books etc are momentary distractions which are quickly ignored and even my iPhone which she used to be so thrilled to actually be trusted with, she'll take and a minute later isn't even showing the slightest interest in. Her dad took her bowling for the first time at the weekend (once she'd stopped wheezing like at the beginning of the week) and he had two other children with him, which normally would be enough to have her smiling on it's own ... but he reported that although she was distracted for a little while, she was clearly not happy and it didn't last long before she was crying, asking to be carried about, then just wanting to go home again.

Needless to say, this is very upsetting. My little girl used to be so happy - despite everything she had to deal with - and most days now is constantly whining about anything and nothing, crying on and off the whole day and I am running out of ideas of how to cheer her up. I know how bright she is and that she is most likely frustrated by the fact that she cannot get her body to do what her brain wants it to, because of her physical limitations but she used to cope with that relatively well. Is it because she's just now getting older and becoming aware of the extent of her limitations? Is it because her low muscle tone has taken a backslide and she's now floppier again than she was even when we went to New York in Oct/Nov? Is it because she's been poorly almost all of January? Or a combination of all of these things? Nobody seems to be able to know for sure, although are guessing it's probably a combination of these things. Whichever is causing her misery, she is not quite capable of communicating it to me yet - other than repeatedly telling me how upset, sad or what a "poor girl" she is. When asked to be happy, or to put a happy face on, she just says "no" and starts crying. :-(

I am due to see the clinical psychologist again next week and still unsure if she actually feels there is an issue to be concerned about with Alyssa, as I don't always understand her perspective of the stuff going on. She is able to give me alternative theories as to why Alyssa may be behaving the way she is - all of which are perfectly reasonable and possible (especially given the fact that she is objective) - but I struggled to get practical solutions on how to actually help Alyssa in these periods, so perhaps I did not take from our time what I should have. I shall attempt to ask this at our next meeting as it is pretty much what I am looking for, in our time together. I completely understand the need to know what is causing Alyssa to have these mood swings (not that they are actually mood swings any more, just a fairly constant low mood) but what I actually need is a way to help her cope with the way she feels. If she feels this way because she is in some degree of pain all the time - again, perfectly reasonable to assume because we know she feels abdominal pain which is present most of the time - then I still need a way to help her deal with that. We are almost at 3 years now and so far, nobody has found an actual reason for her to be in so much pain internally (especially given that she seems to feel no other pain), nor a way to ease that pain; so taking the approach that we should try to get her pain under control before attempting to help her emotionally or mentally, is no longer good enough. Short of some spontaneous improvement or a medical breakthrough, then this is pretty much life for Alyssa ... and she needs to be given ways to deal with that, to help her cope. We cannot "wait" for someone to find a cure for her gut pain, there may never be one. :-(

The occupational therapist we see felt that there is another possibility also, and that this possibility is simply that Alyssa has so much on all the time that she is just not coping with it. That too much is expected of her, without anyone realising it. And that because she has to concentrate on so many things all at once, just to do "normal" things that it comes out in her behaviourally because it's the only way left she can express herself. For example, she has to remember to try and hold herself up straight (she has extremely low muscle tone and it is a physical effort for her just to sit "normally" like every other 2 year old), she has to remember not to scratch (again, something she would do ALL DAY LONG if she could, because the sensation of itchiness is present constantly - despite varying medications and trials), she has to try to block out her gut/abdo pain which is there a lot of the time ... and this is all before she can even do anything she is actually being asked to do like all the other children. It's a lot to ask of her and she is physically limited but doesn't look it so a lot of the time this aspect is easily overlooked by those not trained to notice it.

She went to what was the replacement of her christmas party last week (her christmas party was cancelled due to severe weather issues) and it was held in a gymnasium instead, which also has a "foam pit" which is basically just as it implies. there are big gaps in the floor (it was previously a swimming pool) which have been filled in with large foam cubes, and children can jump into them, bounce on them and throw the cubes etc ... while trying to wade about in the foam. There was also a session put on in the dance hall next door so that older children and younger children could be free to do their own thing, without landing on top of each other and potentially having the older children hurting the younger ones. So Alyssa was meant to go to the dance hall first, and have some "dancing" while the babies and very young toddlers went into the gym. We were only in for about 5 minutes when we realised that those children (some, a lot younger than her) were to jump, skip, bend and stand, and run in a big circle. Almost immediately, Alyssa refused to join in so we sat at the side and watched. Everyone tried to encourage her to join in, but she would have none of it and just started asking to go home :-( I personally believe that she is now becoming old enough to know her limitations, and that this is partly affecting her sadness.

One of the staff noticed that she would not join in (several had tried to encourage her but she just got more and more upset at each person trying), and when she realised that Alyssa just wanted to go home instead of joining in, she told me that Alyssa could just join the others in the gym if she wanted. Alyssa used to do baby gymnastics here so knows it well and was happy to do that, so we went through to the gym. In the gym; she was with babies and one year olds who couldn't do much on their own but she was much happier because she knew what she could do and couldn't do. She was happy to wander about, playing with the toys she could pick up and put down, getting help to go down the slide, and getting help to go on other playground equipment. When it came to the foam pit; I already knew from previous experience that she would not go in there and although I tried to encourage her, she refused immediately. She does not like any surface that is not completely stable, and she cannot get herself out of the foam cubes. She did play happily in the other part of the gym, just as long as she didn't have to do anything that required much physical input from herself. Despite this, she was exhausted and ready to sleep after about 45 mins, and she slept for about 4 hours so it was a strange day. I was glad she'd been able to get some enjoyment out of what should have been so much fun for her, but sad by how little she'd actually been able to do, and how tired that still made her. Most saddened by the fact that she knew immediately that she couldn't keep up with the other children her age (and younger) and wouldn't even try :-(

We did have a fairly good day yesterday. I was determined to try and get her smiling/laughing yesterday, so I told her very early on that we were going to try and have a happy day. Then I put on a new Tinkerbell top that I'd bought, and that cheered her up almost immediately. She is obsessed with Tinkerbell and I've learned that if I wear Tinkerbell, I can show her Tink when she's starting to get upset and it distracts her - even if only for a short period of time. So that worked most of the time yesterday and we went to see Alyssa's gran and aunty Heather in the morning. She played pretty well and was the happiest her gran has seen her in a few weeks (obviously pointing out my Tink top at every opportunity to everyone) and then we came home where she slept for 3 1/2 hours, before waking up and having dinner. Then we went to see Alyssa's cousin, who can also usually cheer Alyssa up and then over to see her nana. She still had a few pouty/whiny episodes in the day, but they weren't too bad at all. So Tink seems to be the thing that still works for the meantime when Alyssa is still very sad.

Here's hoping this starts a better week, and a happier Alyssa.