Wednesday 17 February 2010

February 2010

Seems ages since I last updated. Our appointment at GOSH went really well on 27th January and they are so pleased with his blood results that he can now stop the immunoglobulin infusions which we are all happy about. He will continue to be monitored by Sheffield and Kings Mill Hospital via blood tests etc.

After a couple of months off the immunoglobulin, Oliver will beging his vaccination regime again. He will start from the beginning like a baby as all his previous vaccinations will have been voided by the chemo and the transplant. This means the hib, polio etc and the MMR. We need to speak to GOSH when we need to start this. They will then test his vaccine response and if he responds normally to the vaccines all is good and we just carry on. If he doesn't he will have to go back on immunoglobulin so fingers crossed.

Oliver started Nursery on the 6th Jan and he loves it. In fact he is ready for full time school really he skips into nursery which is lovely. Another milestone on our journey with Wiskott Aldrich Syndrome.

We have met another family from Newark whos little boy is in GOSH now having his transplant for WAS and we are keeping up to date on his progress bless his heart.

Dave is now working away from home permenantly which is hard but needs must.

Adam is lovely and he is now taking a few solids (well purees!) He is doing very well and I feel we are one step closer to being a 'normal' family -whatever 'normal' is.

Our next appt at GOSH is 27th May when Olivers Annual checks will be done. I will update before then obviously but will sign off for now.

Sunday 3 January 2010


Well its the 3rd January 2010 and can't believe that this time last year we were eagery anticipating a date for Olivers transplant. We have come a long way since then. Olivers CD4 count continues to rise and is now .459 which is coming up to the bottom end of normal. He starts nursery on Tuesday which is another milestone in this incredible journey he has been on.

Its mind blowing that he has been through more than most adults have in his four years and this never fails to astound me. During this arduous journey most people around us have been incredibly supportive. Apart from Daves employer.

They have or should I say the Director of the company has, made it incredibly uncomfortable for him even saying that he has not been an ideal employee because of the time he has had off with Oliver and that they 'would not stand in his way' if he wanted to leave! This is at best Shameful and at worst abhorrent to me as a human being who has compassion for others. Dave has ended up resigning. This coupled with the fact that they made him take two weeks holiday out of 2010 allowance for being in hospital with Oliver in 2009 so he could get paid (bills have to still be paid) and because he has resigned they have taken that two weeks from his final salary leaving us with very little before Christmas. Hardly a contender for employer of the year ?!? Do these people not understand that he wasn't going in for his tonsils out?

Anyway, as long as Oliver continues to do well we will keep soldiering on and try to put it behind us with the contempt it deserves.

Olivers next immunoglobulin is 14th Jan and we are down at GOSH again on the 27th Jan. Will update then.xx