It's been an "up and down" week ...

It's just been one of those weeks where if I was asked how things were from day to day - or minute to minute at some points - it would have been a completely different answer!

Should start with the good news! Seeing as it's so rare here. The police presentation was a lovely event for Alyssa, where she ended up being the star of the show. Not only did they all love her, but she made everyone laugh when she didn't even accept the cheque when it was being presented to her ... because she'd spotted the table full of cakes on the way there! She completely ignored the Chief Constable and grabbed a little cake instead! Heh! Just shows that paper vs treat wins in toddler mode! ;-)

I'd like to say a huge thank you to the police at this point however; as the cheque they presented us was for £1000! A huge step towards Alyssa's sensory room, and one we are extremely grateful for! There was an official photograph taken so will hopefully have that too, but it won't show the quality moment where it was just about to be taken with everyone doing their best not to look too serious (and failing miserably) .... and Alyssa suddenly shouting "CHEEEEEEEESEEE" which just made everyone burst out laughing! Then she was very proud of herself and did it for both the follow-up shots! She's such a little character! ;-)

Unfortunately; that was the only really good part of the week because the "screaming" episodes were back in force - particularly through the night, whenever she needed to poop. I got to the point where I genuinely didn't know what felt worse: being up 4-5 times throughout the night and just having to ride it out until she managed to go, so having totally broken sleep .... or actually getting most of the night's sleep ok, only to be woken in a complete panic - with the compulsory adrenalin rush - when she woke up screaming in pain! The latter felt worse and by Friday, I was absolutely exhausted! I'd given up all hope by this time that the gabapentin was helping - it still seemed to be taking the edge off slightly and her behaviour had definitely improved on it, but she was still not "herself" on it yet suffering almost as much pain as not being on it.

In total desperation; I called Alyssa's paediatrician and we debated the potential options (I use the term "debated" very loosely this time round, because I was so tired and emotional that I wasn't capable of thinking very clearly or objectively). It was mostly her asking me questions and for what my thoughts were (ha!) then us agreeing to try the latest of her drug suggestions, which this time meant withdrawing the gabapentin - which was making our lives worse instead of better, NOT the idea it was given for - then trialling a new gut relaxant drug which would in theory help to reduce the spasming pain she feels when she needs to poop. And a sedative for overnight - to let BOTH of us get some rest! I had to wonder if that would actually work anyway, as Alyssa has proved several times in the past that drugs used on her can have the opposite effect from that intended! So I worried that instead of a restlessly sleeping child who then wakes screaming in pain, I'd have a child who was just hyper and unable to sleep altogether!

Something else she suggested - as more of a distraction technique than a real "pain reliever" one - was to buy Alyssa some particular toy/teddy that she kept specifically for when her pain was occurring. To then try and get her to associate that when the pain comes on, she automatically reaches or asks for the new toy. So I bought Milly! :-) Milly is a pink stripey fluffy "baby" cat (she's obsessed with babies at the moment, particularly baby animals) and she took to it really well. She is aware that Milly is not actually taking her pain away when she hugs Milly, but the idea's been pretty well memorized by her already. She doesn't always want Milly, but there are a lot of times where she'll ask for her ... so the connection is there somewhere already. A brilliant suggestion, if I'm honest!

Fortunately on Friday night, she didn't turn into a hyperactive maniac! She was exhausted by bedtime on Friday anyway however, so I couldn't be sure that the sedative was actually helping - and we were still up with her screaming at 6am Saturday, although I eventually managed to get her to fall asleep again and we had a long lie until nearer 9. I thought she might still be a bit woosy in the morning but she was IN GREAT FORM!! And I'd actually noticed a big difference in her mood and behaviour as Friday progressed and I didn't give her the gabapentin, so she was much happier by Friday teatime too. Last night; despite it being a lot later when she went to bed (I took her to the shows/fairground and she had a ball - something she doesn't get to do enough of!), she was restless when trying to fall asleep. But once she finally fell asleep, she was settled for the rest of the night. Again, she woke crying (but perhaps not quite screaming) at 6am but I got up ... and she fell asleep again! So *I* was awake and ready to start the day, and she'd gone back to bed! Saturday morning; we also had a brilliantly lazy morning where we watched tv, ate at leisure and just took things moment by moment. She was so happy, it seemed surreal! :-) Obviously, she was still having "episodes" but she was so happy in between these episodes that they were much less noticeable! I LOVE it when my beautiful girl is this happy, it's so rare and heart-melting, and nothing else quite compares to that proper laugh of hers when she's having fun! After her nap, things went downhill quite a bit unfortunately and she lay on the rug (with lots of cuddles on and off, every time the pain kicked in) most of the afternoon, until she pooped repeatedly some hours later!

The rest of the week was VERY up and down unfortunately, with most of the good parts being spoiled by the bad parts. Have had many incidents of Alyssa lying on the floor in the supermarket, outside the chemist, my driveway .... all because she was doubled over in pain - trying to poop! In a way; that's slightly better than it sounds because I've been teaching her to try and sit - or lie - down as soon as she feels it coming on her (and it comes on suddenly, and frequently) so that she is not collapsing, and smacking herself on the ground when it comes on. So it's not exactly brilliant, but at least there have been less head injuries this week! It's always so annoying that this is the type of thing that I have to look to, in order to find something positive to say about our lives! *sigh* :-(


However; the pain specialist is back on Monday (have we really managed to ride it out for 2 weeks?!? Some of that time has felt like forever, but it also now seems surreal that we're almost there). Alyssa has more nerve conduction tests being done on monday by the neurologist (to check how her nerves are sending signals, because she is on Thalidomie - known for causing peripheral neuropathy or a type of nerve damage, which would ironically normally present as pain but which in Alyssa she may not show any symptoms of. So far; her results have been normal so we hope that this will be the same result on monday, but I am also hopeful that we may catch the pain specialist on monday at the same time. Seeing both the pain specialist and the neuro together is much easier for everyone, because they can debate potential treatment options or risks all at once - instead of having to wait for third hand information from me, or until they have time to access the MANY e-mails which fly back and forth regarding Alyssa! So ... hoping to have a date for admission next week, for the next drug trial which we have waited very anxiously (and painfully - in Alyssa's case) for!

The sponsored hill walk up Ben Cleuch is this Sunday, so I'm trying to convince myself that it's going to be really easy! ;-) It's already looking like it's going to be raining all day, but hopefully it will just be a little cloudy or perhaps some light showers. Have had a couple of volunteers unfortunately had to pull out last-minute but for unforeseeable events, and totally understandable and we still have a pretty big group - and lots of supporters!

Thank you to everyone who has either volunteered to walk this walk, sponsor us, donate - especially from other countries (you know who you are!) and just for everyone else who has supported us in a variety of ways ... or are already planning the next event for Alyssa! She isn't old enough to understand it all yet, but I appreciate it, and so do all of Alyssa's family and friends! xx