We love the NHS

This week we had Joel's long awaited cardiology appointment. A 3.50pm appointment slot on a dark, rainy afternoon... doesn't bode well. Our cardiologist is great but she always runs late, this time she was over an hour late!

Joel started crying before we even got into the consulting room. Jamie had downloaded Peppa Pig to his Itouch hoping that would help, I packed sweetie hoping they would help but nothing helped. He cried it out and then surprising was very cooperative, whilst complaining that the wand thing was "owwie on his boom boom."

After an ECG... have you ever tired keeping a two year old still enough for an ECG? we received the results.

1. His ECG was more or less normal :)

2. His aortic valve is undamaged at the moment. :)

3. Open heart surgery will never be an option unless in an emergency. :)

4. We can wean him off the diuretics he has been on since 16 days old. :)

5. The hole may close. 50% usually by 5 years old. 75% by 8 years old. So Joel may be one of these but as time goes on the likelihood gets smaller. :) and :(

6. He may need surgery later but the success rate right now is not high enough to give this to Joel as he seems so resilient and unless there are knock on effects he may just live with it. :)

7. When he comes off the diuretics his weight may improve and then he can come off the milk and maybe the iron. :)

So we left smiling, Joel was full of sweets and crisps and had snow white stickers stuck all over his clothes, shoes and hands. We are back in 6 months to see if he can cope without the medicines, if the hole is smaller or improving... until then we only have to give him his infatrini and iron. A nice break in a 2+ year routine. No more trips to the dr for repeat prescriptions, no more waiting for special orders and the pharmacist reminding us to watch the shelf life or, "Wow, he's a lucky boy with the cost of this gold dust!"

We are grateful for the gold dust, but we are not sad to see it go! Thank you NHS for looking after us.

And to Joel... keep getting better little man, you are so much fun, we love you dearly and your smile and humour brightens up our day; but you are a cheeky monkey too!.

Birthday Pics

Just the long awaited birthday party photos.

This time last year Joel was in hospital really quite unwell. Today not only is it great that he is better than he was last year, but we get to celebrate Jamie's birthday together as last year it got swamped. So happy birthday Jamie. (Hope you enjoyed peanut butter pie)

Emily started nursery school today. One hug for Daddy and Joel and then off she went to have a great time. The beginning of formal education. She will only be in it for the next 15 years!!!! She looked small in the school uniform but she loved having a school bag. I wonder how long that will last?!

Well...

... the tube has gone.

A full and little round face.

Emily feeding him his bottle. ( I love the way he is looking at her. He still had his tube here as we had to make sure he could cope with the bottle.)

So much has happened over the past couple of weeks, but the best thing is that Joel now can smile without a stickie on his face. It has been out for 10 days and his face is slowly recovering. He put on a full pound over the last week, yes one full pound; so not only is his heart getting stronger but he is now, (finally) tolerating the milk enough to increase it to a suitable dose in order to provide decent weight gain. He is now 14lb 15 oz and doing well.

Tonight will be the first night he will sleep in his own room - a bit later than we had expected as he was 6 months old yesterday but only in the past week has he been sleeping more consistently in the night (one or two wake ups.)

He is starting baby rice tomorrow, a really exciting step and hopefully not too messy.

I have so much more to say, our Godson and nephew was dedicated at the weekend, we had a visit to Belfast, we have been decorating, celebrated birthdays, had visitors to stay and are enjoying half term. Emily continues to be a joy and a funny little one to be with. She entertains me with such funny things and with a energy which is so infectious.

More pics to follow.

For now, thanks be to God for a healing and very happy son.

PS. His dedication/Christening is on Saturday 16th May @ 2pm. ( I am busy making the invites so expect them in the post soon.)