Good news ....

Well, it appears that time has gotten away from me once again! Oops! :-/

The spinal consult with the orthopaedic specialist went better than I could have imagined! So was VERY pleased by that. What an exceptionally lovely man he was too, which is always nice! :) He was happy that the defects noted on her spinal MRI were not affecting her nerve roots, so could not be causing the excruciating abdominal/rectal pain that Alyssa feels regularly. And that although he will be wanting to monitor the situation in case it changes, there is nothing needing done about these defects for the time being. He did assess her for scoliosis too (where the spine curves to one side or the other) and was very happy that she has no evidence of scoliosis at the moment. He did say that - unfortunately - her pain insensitivity AND her low muscle tone puts her at very high risk of that developing; that he will actually be very surprised if she DOES NOT develop scoliosis later on, but that we will deal with it as it happens! But he has also showed me what to watch for, so I know if it's starting to develop.

He also assessed her knees and ankles (the joints most affected in those with pain insensitivity - regardless of cause - because of the constant pounding those joints take when suffers feel no pain to indicate that they have landed wrongly etc), and was happy that they are well-aligned, and that there was nothing to indicate any current damage to those joints. He will see Alyssa annually unless I have any concerns/worries before that time, and has left me with the direct number for the spinal liasons nurse. All-in-all, one of the most positive consultations we've had in a very long time! He recommended that we go back to "the team" at Yorkhill, to get her other issues under control (ie her abdominal pain etc) which clearly are not at the present time, and advised me not to worry about her spine. The defect is there, but we know about it and will monitor it accordingly.

I've also been looking at alternative companies for the never-appearing Sensory Room, which is getting more than a little frustrating!!! I had a rep from another company out a couple of weeks ago to give me a competitive quote against the original company I was quoted by, and have just phoned the new company today to say that I still have not received the quotation! After some searching, I was told that it was posted yesterday .... so hopefully will be with me today. Am disappointed as the rep was very thorough at the time, pointed out things that the first rep had not made clear to me, and was fab with Alyssa. And that alone had swayed me more towards this particular company, but I'm disappoined that it's taken 2 weeks to even get the quotation to me! The first company had it to me in 5 days at the initial assessment, it just took a bit longer to get the new prices once we finally had the money together and the building work was arranged.

I have contacted the housing association once again and asked for a final confirmation that they are happy to proceed with the sensory room, as I feel like I've been waiting forever! There have been no workmen in my house since before Christmas and nobody has been by to check the level of work since that time, so I am presuming that it is fine to go ahead ... but I don't want to pick a company, have them start installing it then discover that the housing association are not happy! Aaaaaarrrrggggh! Hopefully this will get to the "creating" stage in the next couple of days, as - according to the sensory rep - it takes about 6-8 weeks for the foam padding to be cut and covered to order ... so the date for finalisation is getting further and further away! Yes, very frustrating! :-/

In other "exciting" news, we've been looking for help with one of Alyssa's many other problems - her inability to control her body temperature properly. And I contacted a few companies who make "temperature change" wristbands - normally for advertisement purposes, but which I though might help the nursery/school staff identify when Alyssa was overheating. The health visitor also told me about a company called "Babyglow" who make special sleepsuits for babies, where the fabric changes colour in relation to the temperature of the baby!!!! So I e-mailed them and asked if there was any way to have wristbands made up from them - which I would be more than happy to pay for - esplaining about Alyssa's problems.

I got a phone call from the chairman himself, that afternoon! To say that his team had passed my e-mail on to him and that he was absolutely desperate to help Alyssa in any way he and his company could! He said he wasn't sure that wristbands would help because the skin temperature in different parts of the body are different temperatures (something interesting that I didn't know!) but that if I sent him all her measurements, he had a few ideas and would see what he could make up to help both her and us. He initially thought of using headbands, but unfortunately I cannot get Alyssa to even keep a "normal" headband on ... not even if it has *gasp and scream* T.i.n.k.e.r.b.e.l.l on it! So I didn't believe she'd keep a babyglow one on. So he basically told me just to send him all her sizes and - for the shorter term - they will make her up 5-7 vests which she can wear under her nursery tops, and the staff will just have to peek at her vest if they are concerned she's too hot. And he will get his team thinking about what else they can do! Oh, and all of it they would do free of charge! :-O

I was absolutely stunned by this generous offer. I was more than prepared - and willing - to pay for anything which would help make both Alyssa's life easier, and those caring for her. And I'm used to either paying for personally, or fundraising to get her what I think she needs. But the Babyglow chairman would not hear of it, and says that their company was started for people like us. Individuals who need help and are struggling to find it, and that he has never forgotten that! I am overwhelmed by their generosity, and cannot wait to see what they will come up with! :)

We're off to DISNEYLAND, Paris next week for her little majesty's birthday! Can't believe she's going to be 4! But she's very excited, particularly about seeing TINKERBELL (surprise, surprise) but also the Disney Princeses and Mickey, Minnie and the gang! Belle is now her "favourite princess" and she is almost as obsessed with Belle, as she is with Tinkerbell ... who I am assured is still her "favourite fairy!" ;) Starting to get my list together of the zillion things required to take Alyssa anywhere ! and then working out what *I* can take, in whatever space is left over in the cases! Alyssa does not travel light!

We will be back just in time for her birthday, so her family can see her too. And so she can show off whatever ridiculous things I am sure we will bring back from Disneyland for her! I will try to update again soon x