Well since my last blog entry Chiara has been a wee star. She has been keeping fantastic. She has not required any platelet transfusion or blood products for over a month now and therefore we have only been visiting Yorkhill on a Monday to receive her weekly enzyme. For the first time in over a year I actually feel like we are behaving like a "normal" family and enjoying daily living. Chiara remains Norovirus positive although she remains symptom free. Her latest date for transplant is 26 April 2012. The dates were postponed a few times to see if she could shake off the norovirus out of her system before she commenced her conditioning Chemotherapy in preparation for transplant. I understand the reason for this as going into Chemo with a virus present therefore could make her gut even more toxic than it is already and would leave her at risk of severe gut infection whilst going through conditioning. On the other hand I felt time was running out as Hurlers kids require transplant before age of 2 to obtain the benefit. This is something that I am not entirely sure about now as Chiara has already received treatment from an early age and also has had 4 months benefit of transplant. At present she shows no signs of any neurological damage or developmental delay. She had her spinal assessment carried out and this went well. Chiara will be admitted on 12th April for a sleep study to assess whether she still requires BIPAP overnight. This had been recommenced after her severe Pneumonia in December to give her extra support over the winter months.
Chiara has achieved a better quality of life this last 6 months than anyone could have ever imagined when we were given her diagnosis last year. It is almost 1 year to the day when Chiara was placed on the ventilator and our long journey started.
Family members have been tested and unfortunately my Dad has been found to carry the Hurler Gene and also Muscular Atrophy gene which is another condition in our family. This has led to extensive further testing with other family members.
On the 29th March 2012 Chiara had further hearing tests carried out and thankfully we were given the news that she was hearing and if any hearing loss was evident it was only slight but unfortunately due to Chiara's unwillingness to cooperate complete hearing test was not carried out. She wears no hearing aids and appears to be hearing extremely well. She is trying hard to talk and communicate so much so she blethers all day but I find it hard to actually recognise the words which sometimes leads to her getting frustrated.
Life is never dull when Chiara is around, especially now she is walking and talking. I think it is safe to say I certainly have my hands full with her and her brothers. Whilst I do not look forward to enduring another 8 to 12 weeks in hospital I know this time around what lies ahead for her as I have experienced it before. My only hope is that she keeps as well 2nd time round as she did the first. I
hated her losing her hair the first time round but this time I think I will be even worse as it has come in so dark and curly it will break my heart to see it fall out.
Richard carried out a 10k run in Peebles which involved a kind of assault course and raised a considerable amount of money for Schiehallion Ward that Chiara is spending most of her time. This I feel is the least we can do to show our appreciation for all the help she is given.
Richard will commence his course of GCSF to boost his Neutrafils 1 week before Chiara's transplant date and then will be admitted to Beatson to donate the stem cells.
I will of course keep Chiara's blog up to date with her progress.
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