Still going strong!! Home Now :)

Hello my lovely bloggies!!!

I know its been an age since we updated...It has been a bit of strange time...coming home and getting used to being independent again!!
We had become really quite institutionalised....I guess it would have been hard not to.....living in a 12 x 12 box for all that time!! :)

We have been home for 2 weeks now....Alex has put weight on ( almost 1.5 Kg since we got home....he looks much better for it and seems to be gaining strength all the time.

The pictures above were taken on our belated Christmas Day which was last Saturday!!!  Father Christmas came on Friday night and brought Alex EVERYTHING that he had asked for on his list....must be because he has been so good and brave this year!! :)
We had Christmas Dinner with all the trimmings on Saturday and watched all the Christmas TV that we had saved on the good old Sky planner!!!  It really felt like Christmas day...in fact it was strange to see normal life going on outside as we sat with our party hats on!!!!
The Scooter in the pictures has been put to good use and Alex has been out on little ventures around the estate....he is managing to get outside for some fresh air when it is quiet and nobody is around....He loves it!!

Alex's blood tests are weekly now... which is quite stressful after getting daily updates..... you get used to such close monitoring..  We have a lovely Community Nursing Team who come every Monday morning and change his dressing, flush his lines and take some bloods...
Last week, his results were FABULOUS....neutrophills over 2 and Lymphocytes rising nicely......
this week not quite so good....everything has dropped again :(  Neutrophills down to 1.3, lymphocytes down, Haemoglobin down to 8.7 which is getting very close to needing a transfusion.... :((
I'm hoping that it was a dodgy blood sample and that next Wednesdays test will be better!!
It is frustrating because he looks so well and feels well....makes you realise how potentially fragile the whole house of cards is....and what a long way we still have to go...
On a positive note though....they tested engraftment again last week and it is still hanging in there at 100%... HOORAY!! :))

Today has been a frustrating day....as my Facebook Friends will already know!! LOL

We STILL don't have any teaching at home...despite the fact that GOSH contacted Hampshire LEA on 4th Jan and Alex's school sent of all the paperwork on 5th Jan...the age old...."paperwork didn't arrive" excuse is being wheeled out and so..... after me and school chasing it for a week now....I've FINALLY had a call to say that his tuition will be starting NEXT Wednesday!!!
Despite the fact that I had already told them that we couldn't do any Wednesday as it is Clinic day....

The lady actually said that she was sure that I would be really grateful and pleased that they had managed to sort it out so quickly!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Alex has been home for 2 weeks.....by next Thursday he will have been home for 3 weeks.....with no provision AT ALL.......

There is a statutory requirement for them to provide a minimum of 5 hours a week......
Then.....to top it all off...she told me that he had to have his lesson at 9am every morning and whilst she understood that he was sick and probably needs rest....I have  to understand that she only has 6 tutors and LOTS of children requiring one to one tuition so I could take it or leave it!!
I wonder if they would have the same attitude if he were one of their regular "clients" at the Pupil Referral Unit....the school refuser's or kids with behavioural problems so severe that school won't have them?????

Brilliant!!!........As those of you who know me well can imagine.....
there aren't enough curse words for me to use in a rant about the attitude of some of our sectors of Public Service........
I am very close to giving up hope that there is any point in being a law abiding, well behaved, tax paying citizen....

I've also had to spend the day chasing down the delightful team of CNS Nurses in outpatients for BMT....we were told that they would always phone us on a Thursday with an update on bloods and Alex's care...
After eventually tracking them down via a message on answering machine and then sending our CNS, Helen to see them....

apparently we were misinformed by the inpatients team...and they would only phone us if there was a problem....

I'm sure you can imagine that the information was passed on to me with the usual care, compassion and understanding of the BMT nurses in outpatients..... They didn't even tell me about his engraftment holding steady....luckily our CNS Helen is fabulous and phoned me herself as I think she suspected that I wasn't going to get much out of the BMT team!
It must be very difficult for them...having to deal with these damn parents with children  that have just had a transplant ....I can't imagine how hard it must be for them to have to pick up the phone and give information to people like us who are so bloody demanding...
Perhaps we could all petition for patients and their carers to be removed from hospitals to make Nurses jobs a bit easier....then they would be able to finish their shopping on-line or catch up on the latest gossip!

I must remember to stand by their side next time they are out on strike ....all these truly competent and professional "teachers" and nurses!!!

There......rant over...... well for today at least!!

I can't wait for the day when we get the all clear and I don't have to spend my life relying on incompetent and rude "professionals"....

It will be A  MAZ  ING :))

Anyhoo.......Alex is oblivious to all the background crap that I deal with so he is a happy boy......:))

Ms Wills from school brought over a dozen kids from his year today...they came to bring Alex some presents of sweets and books...
He was thrilled!!!
They all stood outside on the front lawn and Alex talked to them through the window...

He loved seeing his school friends and was really excited!!

I particularly loved it when one little girl ( who is renowned for speaking her mind!!!! LOL)...walked up to me on the front step with a look of outrage on her little face and said

 " WHY DOESN'T HE HAVE ANY HAIR????????
 I briefly explained....she looked perturbed and then said  

" Well....................... at least his eyebrows appear to be growing back!!!!"

Brilliant :))  really made us laugh!!!  ( especially as Alex's eyebrows are indeed growing back....they are quite dark and he is in danger of looking a bit like Sam the Eagle of the Muppet Show!!!!)

Will try to keep updating once a week to keep you up to speed with the recovery...

Finally I just wanted to reiterate how very grateful I was and am for all your support over the last few months....It was incredible to have my worldwide family cheering us on  and I hope you all realise how very important it was to keep us all smiling and positive!!

Yay for social networking!!

Speak soon

Lots of love as always XXX