So, around this time last year we wrote a blog update about Minnie's health. We are always happy to talk about Minnie's condition if people have questions or are interested, but there is a lot of detail so it is helpful to have a way to let anybody who wants to know get up to date.
A lot happens in a year, so it seems a good time to update as we visited the haematologist yesterday.
Pyruvate Kinase Deficiency (Minnie's primary condition, AKA the blood stuff)
This year we tried to stretch Minnie out between blood transfusions, her last interval was 8 weeks. She was grumpy, listless and struggling in the couple of weeks leading up to transfusion day, so it was no surprise that her Hb was 6 (normal is 11-13). So, we are now going back to 6-weekly transfusions and we are comfortable with that. Better to have a day in hospital every few weeks than for her to be short of energy and feeling rotten. And this will likely be the state of things ongoing, maybe forever. As we mentioned in the last update, there are no cures or other suitable treatments for her condition at the moment.
Iron Levels
Minnie accumulates iron from her transfusions which, if not managed, can settle in her organs and cause damage. So she takes a daily medicine called Exjade, and we are upping her dose so she can get rid of her iron a bit more efficiently, especially as she will have a regular regime of transfusions again. The medicine has some potentially nasty side effects (hence trying to get her off the transfusions to avoid the iron), but so far she has had no adverse reaction. Long may that last ...
Ears
This summer Minnie got her cochlear implant in her right ear, and she is already feeling the benefit. Especially when she is not anaemic, she is talking ever more clearly and accurately. She is hearing 'sss' and 'shhh' for the first time, and although the gobbledygook is still there, it is slowly being replaced by more comprehensible words and sentences. It is still a long road, but it is refreshing to be able to communicate ever more clearly with her, and she understands a lot.
Unfortunately Minnie also suffers from Glue Ear, and is having regular ear infections which we have to treat immediately with antibiotics due to the added risk of her implant becoming infected. We are about to have a conversation with the surgeon about whether to not to give Minnie grommets which may alleviate the infections.
Above all, we are still so grateful that our lives are (relatively) normal, that Minnie is growing up to be a strong, bright and vivacious young lady who is certainly not held back by her ongoing care.
A lot happens in a year, so it seems a good time to update as we visited the haematologist yesterday.
Pyruvate Kinase Deficiency (Minnie's primary condition, AKA the blood stuff)
This year we tried to stretch Minnie out between blood transfusions, her last interval was 8 weeks. She was grumpy, listless and struggling in the couple of weeks leading up to transfusion day, so it was no surprise that her Hb was 6 (normal is 11-13). So, we are now going back to 6-weekly transfusions and we are comfortable with that. Better to have a day in hospital every few weeks than for her to be short of energy and feeling rotten. And this will likely be the state of things ongoing, maybe forever. As we mentioned in the last update, there are no cures or other suitable treatments for her condition at the moment.
Iron Levels
Minnie accumulates iron from her transfusions which, if not managed, can settle in her organs and cause damage. So she takes a daily medicine called Exjade, and we are upping her dose so she can get rid of her iron a bit more efficiently, especially as she will have a regular regime of transfusions again. The medicine has some potentially nasty side effects (hence trying to get her off the transfusions to avoid the iron), but so far she has had no adverse reaction. Long may that last ...
Ears
This summer Minnie got her cochlear implant in her right ear, and she is already feeling the benefit. Especially when she is not anaemic, she is talking ever more clearly and accurately. She is hearing 'sss' and 'shhh' for the first time, and although the gobbledygook is still there, it is slowly being replaced by more comprehensible words and sentences. It is still a long road, but it is refreshing to be able to communicate ever more clearly with her, and she understands a lot.
Unfortunately Minnie also suffers from Glue Ear, and is having regular ear infections which we have to treat immediately with antibiotics due to the added risk of her implant becoming infected. We are about to have a conversation with the surgeon about whether to not to give Minnie grommets which may alleviate the infections.
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