Well, we've had some mixed news. They couldn't find a 10:10 match for Imogen, both the German and American candidates turned out to be 9:10's, so they've decided to go ahead with me at 9:10. It's good because it means things will start moving now but it would have been good to have a 10:10 match to give her the best possible chance.
They've decided not to harvest my stem cells from my blood but to go into the hip bone to extract the marrow directly. So on Monday the 13th we both went in for a full medical at the Bristol Childrens Hospital. I got a clean bill of health but unfortunately they found a virus in Jim Jam's blood sample meaning their target admission date of today has been put back by up to four weeks. We're both a bit gutted, although we know it's for the best.
We're keeping her at home as much as possible now to reduce any chances of catching anything else and all visitors are asked to be bug free and to sterilise their hands as they come in. Even so I know Wendy is climbing the walls at the moment so I think she'd appreciate any visitors.
What else, oh yes Jim Jam seems to be getting on really well with her hearing aids now and giggles away like a thing possessed listening to musical or noisy toys (or noisy nieces). She's wearing them for hours at a time now, which is great, and isn't putting up such a fight when we fit them.
Visit to the Paediatrician tomorrow. I think she'll be shocked at the weight our girl's put on. Must be over a kilo since her diet was changed which is a miracle compared to the way she was losing weight.
Signing off for now.
Monday, 20 June 2011
Wednesday, 8 June 2011
Wednesday 8th June 2011
Well I haven't updated the blog in a while. After our awful news from the consultant I wasn't in the right frame of mind. Now it has all suddenly gone manic. For those who don't yet know Imogen had her formula changed for a prescription food called Infatrini. The stuff has worked wonders and instead of losing weight she immediately started putting it on, and quickly. We had to visit the consultant again for a chat and he was so bowled over with her recovery he changed his mind about not doing her transplant. He immediately took our bloods for tissue matching and has now applied for and got the funding for the procedure.
We have since found out that I am the best match with a 9 out of 10 score, but they're going to try and find a 10 out of 10 matched donor. We've been told that there are two potential candidates. One in America and one in Germany, fingers crossed.
Thanks to all who came to Jim Jams 1st birthday party on the 22nd of May or who sent presents and cards. It was a lovely day and we were stunned by what a thoughtful and clever lot you all are in coming up with suitable presents.
OK well back to the whole tranaplant thing. They fitted a Twin Hickman line into her chest on the 24th of May under General Anaesthetic. It will allow easy taking of blood, administering drugs, food and transfusions. All seemed to go well but within two days she started bleeding and we spent Thursday, Friday and Saturday nights in and out of hospital having the chest incision constantly redressed. It seems to have settled down and Wendy has even cleaned and redressed it herself when the little darling managed to pull the dressing off.
On Thursday 2nd of May Imogen had her hearing aids fitted. You should have seen the look on her face when they switched them on. She's having them in for a couple of hours each day until she gets used to them but although it's overwhelming for her at times you can see the world opening up to her.
We have since found out that I am the best match with a 9 out of 10 score, but they're going to try and find a 10 out of 10 matched donor. We've been told that there are two potential candidates. One in America and one in Germany, fingers crossed.
Thanks to all who came to Jim Jams 1st birthday party on the 22nd of May or who sent presents and cards. It was a lovely day and we were stunned by what a thoughtful and clever lot you all are in coming up with suitable presents.
OK well back to the whole tranaplant thing. They fitted a Twin Hickman line into her chest on the 24th of May under General Anaesthetic. It will allow easy taking of blood, administering drugs, food and transfusions. All seemed to go well but within two days she started bleeding and we spent Thursday, Friday and Saturday nights in and out of hospital having the chest incision constantly redressed. It seems to have settled down and Wendy has even cleaned and redressed it herself when the little darling managed to pull the dressing off.
On Thursday 2nd of May Imogen had her hearing aids fitted. You should have seen the look on her face when they switched them on. She's having them in for a couple of hours each day until she gets used to them but although it's overwhelming for her at times you can see the world opening up to her.
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