Happy CMV awareness month! A progress update.

Happy June everybody! We're so happy that summer is finally with us, let's hope that the weather begins to realise summers here soon too! In case you weren't aware (most of you probably are, I bang on about it enough!) June is CMV awareness month, so if you have me on Facebook, consider this your warning, I will be posting a LOT about CMV this month!

So it's been a while, so long in fact that I just had to have a sneaky read of my last post to see where I I left you (blogger of the year award anyone?), and man has it been a busy couple of months. I think I ended my last post with something along the lines of "fingers crossed we're not at hospital for a long time now!". Yeah, well, that didn't pan out at all! Anna had different ideas! 3 days after her discharge from Russell's Hall, she was readmitted to Birmingham Children's. They vomiting continued, the tube coming out, she was just desperately unhappy, as were we. We were kept in for 16 days while the doctors and nurses tried to get her sickness under control, but it was to no avail. They repeated the barium swallow which gave back some utterly surprising results - no reflux!! I didn't know whether to laugh or cry. The doctors decided despite this, it was definitely reflux we were dealing with. We were discharged with the vomiting still no better, but she has gradually improved. We still have a few vomits a week, but they are nowhere near as bad as they were previously! We have also recently met Anna's surgeon who will be performing the gastrostomy. We are currently trialling her on another new medication 4 times a day to see whether it is her brain sending sickness signals, or whether it is the reflux. We're seeing him and his team  again at the end of June where they will decide whether she needs the fundoplication in addition to the gastrostomy. With any luck, the surgery will be happening in 8-10 weeks time. Things are a little easier at home now that I have been trained in passing the NG tube, no more late night or weekend visits to hospital so the tube can be repassed, wahoo! We just can't wait until we don't have to put her through it at all anymore, her cries at tube changing time are heartbreaking.

Now on to a few positives. Anna has been offered a place at nursery! We are all so excited. It is a funded place for 2 afternoons a week with a one on one nursery nurse. It'll mean I get 3 hours to spend with Leo, and I will have 3 hours to do some housework or food shopping without children crying or screaming at me, absolute bliss! It will be so good for Anna too - she absolutely adores other children, and being in a nursery environment will bring her on so much. We're just so grateful we have such fantastic professionals involved in Anna's care who genuinely want her to reach her full potential. We've also started her Team Around the Child meetings recently. This is basically when we get together with everybody taking care of Anna at a meeting, not even 2 years old and she's holding her own meetings, get that!! They are a fantastic way of us all coming together and making a list of targets as a whole instead of stumbling through and forgetting who said what and when - it simplifies her care plan for all involved. We'll soon be part of a switch toy library, which is something Anna is particularly excelling in at the minute. She's also taken a shine to sensory games on the iPad - it's times like these I'm glad daddy is an IT buff after all! We're also being referred to Acorns children's hospice. When this was first mentioned to us I recoiled in horror. I was terrified about what being referred to a hospice meant for Anna. But I know now that they do much more than provide end of life care. They hold activities for not only poorly children with life limiting conditions, but their siblings too. They can offer us respite when we need a bit of time alone or with Leo. Overall it's a great opportunity for us a family and we'd be silly to turn down their involvement!

So I think that's it for now. I will probably be positing again some time within the month - as I said it is CMV awareness month after all, and that is ultimately what we're aiming to do!