A busy couple of weeks

Jessica had her monthly check-up with the community nurse at the end of last week and her sats were up to 82 which is the best they’ve been for a little while.  Her weight was a little down from the previous weigh-in at 12.4kg (27lb 4.5oz) but she’s still following her centile line nicely.

We are now at the stage of having to be very careful about what we say as she is definitely starting to repeat lots of things now!  Watching her playing with her dolls and saying things like “Eat dinner, have cake… …then no cake!”, “don’t touch, be careful!”, “hello Sophie, nice to see you!” and my personal favourite: standing at the bottom of the stairs and calling “Get up Michael!”  We’re definitely starting to see all our little pet phrases coming right back at us!

We enjoyed spending time with other members of our church family last weekend when we went away on the church fellowship weekend.  Jessica and Sophie both enjoyed spending time with everyone there and it was lovely for us to spend time away as a family.  We took a little detour on the way home and visited one of the Paralympic gold postboxes in Oxford which brings the total of these up to 24 (out of 46)

Nanny came to stay recently and looked after Jessica whilst Mummy and Daddy took part in the concert at church which helped to raise £112.60 for Friends of PICU.  It was lovely spending a few days with Nanny and then visiting family when we went to stay with Nanny for a few days when she went home again.

We are looking forward to having our first family holiday abroad next month – going by ferry and car to the south of France to visit friends there.  We had to do quite a bit of phoning around though to arrange travel insurance for Jessica – we found the travel information leaflet and list of possible insurance companies from Little Hearts Matter was very helpful with this.  The lady we spoke to at the insurance company we finally went with happened to also be a heart mum of an 18 year old who was treated at Southampton by one of the consultants who we knew from Jessica’s time there!

  

Jessica’s story has recently been mentioned in the Children’s Hospital Network Annual Review booklet and we received a few copies of this in the post.  Mummy also wrote a guest blogpost last week for the Little Hearts Matter blog which shared some of our experience of how Little Hearts Matter have helped us as a family since Jessica’s diagnosis. 

Three years on...

It’s three years today since the appointment at Great Ormond Street where we were told that Jessica was unlikely to be suitable for surgery and our world fell apart.  In the midst of our devastation, we held on to one thing, the knowledge that God was bigger than it all and we prayed for a miracle.  Three years on and Jessica is here, bringing us so much joy and we thank God every day for blessing us with our beautiful little girl.

 

It has been a busy couple of weeks since our check-up at Oxford.  We have been catching up with Tany and Amy, enjoying trips to the park and afternoons painting pictures of “animals” as well as helping Mummy celebrate her birthday with a day out at Legoland.  Jessica had a lovely time and particularly enjoyed the play area in Duplo Valley.  She enjoyed all the walking around too and didn’t use the buggy at all whilst we were there.  We also had an eventful day out shopping yesterday with Mummy when we got trapped in the lift for 25 minutes (and seemingly unable to make contact with the outside world for the first ten which was quite scary) – fortunately though Jessica didn’t seem too bothered and was quite happy sitting on the floor in the lift with some toys whilst we waited for someone to get us out.

As always, she continues to be very happy and very, very chatty (latest phrase is “that’s better!” which gets used quite a lot!)  We are starting to see a few signs of sibling rivalry starting to emerge now that Sophie is getting more mobile and able to get at more of Jessica’s toys although most of the time they are still very lovely together and Jessica loves to give her baby sister cuddles and kisses (and then sit on her which is less good, but Sophie doesn’t often seem too bothered by this!)

Mummy, Daddy, Grandma and Auntie Marlene are taking part in another fundraising concert for Friends of PICU at church this weekend (Saturday 17th May, 7.30pm at Christ Church, Uxbridge) – more details are available here – please do come along and support us if you are able to.