We went for reagans kidney scan at st georges on tue 9th nov.
We waited flaming ages to be seen and they were very thorough!
He asked me to sit on the end of the bed to amuse her because babies/children tend to get upset.
Reagan didn't she just laid there as if this was something she has done several times a day! It was funny, he really didn't expect her to be so still and calm. Her hands were flopped above her head and everything.
Anyway he said her kidneys are lovely. The right shape, both the same size, in the right Place etc. A little small but thats to be expected because she's small!
So good news there!
We had a couple of hrs to spare so went into Wimbledon for lunch and returned to the hospital at 3pm for her clinic appt.
She weighed in at 13lb14oz, so a 3oz gain in 3 wks, not bad. Her length is 63.8cm, so she's stretched too!!!
No results as yet about the bone marrow match but all the blood was good, all our HB levels were good, especially Alex, how was up at over 15!!!
also our blood celll size was good. DBA gives you an enlarged blood cell.
The full results are back from Portugal, although she doesn't have any of the mutated genes they were looking for she does have something with another gene. I cant remember the word/s she used to describe it but when the letter comes through and it's down in black and white it always makes more sense so I'll update again when that arrives. She did say that they mitt be interested in studying he because of that and so long as it wasn't too obtrusive fore reragan she was happy for that to happen, as are we- anything to help the research.
Other than that all was well, we decided not to test her blood and to give her another couple of wks, its been 3 wks since her last transfusion.
We'll go back and see her in Jan!
Today shes. Having her first physio appt, I'm currently waiting to be called in! So again I'll fill you in as soon as i can.
I'm off to donate my first lot of blood today! I've printed off a picture of Reagan having a blood transfusion to take with me. I'm going to ask if i can leave ir with them for other donars to see how important it is to do what they are doing!
Other than that, she doing fine. Her eating is getting ever so slightly better but her sleeping isn't!! *big sigh* last night she was up loads and today I'm glad it's Friday......because I'm bloody knackered!!!
Ttfn
Xx
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