A busy update

Christmas was not as we had planned but we had a nice quiet family time and Erin had a ball. I think Santa may have thought there was more than just one little girl staying in our home as he seemed to bring enough presents for 3! Well she has been a super good girl after a rocky time last year (remember the neutropenia episode?) so I'm sure Santa thought she deserved them all.

Santa seemed to think a keyboard and microphone would be a good idea........

We had a lovely New Year and headed to a local bonfire to introduce Erin to the art of celebrating Hogmany in Scotland, burn stuff and make merry!

January pretty much flew by in a whirl of birthday parties, lunch dates and work. In the last week of the month we switched Erin from the liquid method of giving her Tac to swallowing the capsules whole. She has not looked back and we could hardly believe how well she has taken to it. She loves to show off her new skill! It is much easier for us to give her meds this way, instead of splitting capsules and mixing the powder with water and drawing up the right dose with a syringe we just hand her the pills and away they go. It's not considered particularly safe for the person doing it to mix the Tac up with water and it is better for her teeth so we are delighted she has taken to it so well.

 February began with a bang as we celebrated Erin's 2 year transplant anniversary! 2 years, I still can't quite believe it. It feels like yesterday sometimes and like a lifetime ago at others. It's always going to be an emotional day as we think about her donor and mostly their family but also a happy celebration as we mark the day Erin's life began again. We had a nice lunch out with a quick trip to toys r us but she was quite happy walking around pushing the trolley basket so didn't actually buy anything!

We were preparing for the yearly trip to Leeds for Erin's MOT last weekend; bags packed, hotel booked, food prepared, when Erin came down with chicken pox. Yes the dreaded pox. It has given me many sleepless nights of worry since transplant but it was inevitable she would get them eventually, for those that don't know this common virus can be very serious for an immunosuppressed child and therefore requires urgent treatment.

We noticed the spots at bath time, whisked her down to Wishaw General ASAP (as per protocol) to get IV Acyclovir started, arrived shortly after 7pm. FINALLY got the IV up by 1am after a long wait due the lack of a consultant around to make a decision and the Junior Doctor taking fright complicated nature of Erin's medical history. Thankfully this was the only blip on this admission and Erin coped very, very well. The spots stopped spreading within hours and the anti virals pretty much stopped them developing in their tracks. She got off very lightly with no itching and no pussy sores to deal with. She had IV antivirals from Sunday night until Tuesday afternoon all on the first cannula. When the cannula blew it was decided to she was well enough to switch to oral and we managed to escape home to complete the course by Wednesday evening! Super Erin! We aren't sure if it was the IV meds or her own immune system but she seemed to kick poxy butt pretty quickly and we were all so relieved. Now we have to wait 2 weeks before we can check her titre levels in her blood to see if she has any immune memory from this infection which might mean she would escape future attacks. I have to say it was a fairly stress free admission (as these things go) and we were well looked after in Wishaw children's ward, a familiar doctor who we've known since Erin's diagnosis was around a lot which always helps and everyone was impressed by her cheery personality.

Keeping our spirits up in isolation

So we need to wait on a new date for going to Leeds but her Tac level was checked last week and is sitting happily at 5.9 and all her other blood results were perfect. 

Please forgive me if this blog doesn't have as many regular updates as I used to do, I think I've lost my blogging mojo, or at least misplaced it for a while.........so after this update I might just post pictures or videos of tiddles for a bit, at least that way you can still get an Erin fix, which I know is very addictive. I think it's also the best way to show how well she is doing too, her lovely personality is just bubbling out these days.