Love is like oxygen

Apologies for the big gap between Blog entries!

The good news is that Elizabeth has put on weight really nicely over the last couple of weeks, so it looks like we have seen the last of her NG tube (at least until after her op when she may need one for a few days). She is still being driven mad by the oxygen cannula, but at least that can be taken out twice a day while she is weaned off the O2. She is now off for two blocks of three hours every day. It is so lovely to see her without tubes for such a long period of time and she is so easy to carry about!

She rolled on to her side without any help yesterday for the first time. Rolling isn't easy when you have a big lump altering your centre of gravity, but she loves it. I also put her on her tummy every day, but that isn't quite so successful. However, we must persevere.

No news on the date for her op yet...

Chloe is still enjoying her new school. She is learning Spanish and all about houses. As a result she shouts such things as "Look, Senorina, a terraced bungalow!" much to my surprise. She has also lost one of her bottom teeth and is very thrilled to be so grown up. She seems to be making friends very well and enjoyed her first Hexham East party last week.

J
x

Big developments!

Hi y'all,

What a wonderful day we had at the RVI! To cut a very long story short:-

We are now on Mr Jaffrey's List - in other words Elizabeth is in the queue for her operation and it should take place in November or December. No date yet and no idea when the date will come through, but it's a major step forward. Mr J doesn't expect Elizabeth to have to go to intensive care after her op which is brilliant. Also, if she goes to Ward 4 (standard paediatrics) I will be able to sleep in her room for the 5-7 days they expect her to be in for.

We then moved on to the dietician who said that we can try Elizabeth without her naso-gastric tube this week and see how she does without it weight-wise. I whipped the tube out two minutes after we got in the house! If she does okay then we can try her on some baby rice next week. This is two months earlier than the recommended time, but Elizabeth loves flying in the face of convention. Hopefully, this all means some sleep for her haggard and rapidly ageing parents.

Lastly, we saw Dr McKeen the respiratory consultant (not the chest man as I normally call him). He is happy for us to try to wean Elizabeth off her oxygen over the next few weeks. She is also having lots of extra vaccines to prevent her catching any nasty bugs this winter. They are reassuringly expensive! The poor wee scrap won't thank us for all the extra injections, but she must be kept well before and after her op.

AS you can imagine we are really thrilled that things are moving forward. Mr J said that Elizabeth has done the best he could possibly imagine without any of the setbacks he foresaw. Fingers crossed that she continues to amaze us all!

A very happy J&A
xxxxx
xxxxx