:)

Car went through the MOT only needing 3 new bulbs!

We can go to Belfast for half term; Consultant is happy that we can get help there if Joel needs it, going back to hospital on 6th, 10th and 13th of November for jabs, blood tests, weigh ins and appointments with dietitian and consultant. So the boat is booked and off we will go!

Today on television there was a snippet with a large waterfall. Emily ran into the kitchen to get me only to bring me into the lounge to say, "the mountain is sad and it's crying, Mummy! Oh dear - can we make it happy?" Sooo sweet!

:(

Only 3 oz this week. Joel is maintaining on the 2nd centile and just not making the progress he needs to. We are waiting for the dietitian to call so that a new 'plan' can be put into place. He is back to the consultant paediatrician on 2 weeks.

Our car is currently going through it's MOT (well lets hope it goes through) and our house is being rewired from next Monday.

Half term starts on Friday and all is well.

Weekends away and family times

We have been away this weekend to Ashbourne in Derbyshire. We had a great time, the sun was shining despite wind and a chill. We visited Chatsworth House, Ilam Hall and the river with stepping stones at Dove Dale.It was lovely spending time with our little nephew Lucas, and for us learning about what it is like to travel with 2 children. (The car was so packed full; I think we take just as much for a weekend as we do for a week!)

In the Bjorn for the first time and very cosy!

Never too cold for ice-cream

Chilling out with the crossword

Nice red leaves, but I am not eating them!

Emily really liked the apple sculpture.

Cousins chilling out before bathtimeTwo boys who will be up to mischief in no time at all!

Joel is doing a little better, he put on 5 oz last week, he needs to put on much more to prove that he is growing and not just staying or maintaining. He had a jab of antibodies to protect him from Bronchilitis ( each jab costs £500 and he needs one every 28 days until March or April) and he has kept his tube in for over a week!

My parents came to visit before they go back to Romania tomorrow. We had lots of fun out and about.

Playing hospitals with Granny

Emily is being potty trained, she was doing well until this weekend. Today just one accident at our childminders so hopefully she is back to dry days. We need to crack that before we attempt nights.

Our house is being rewired next week, we have a great electrician who hopes to do it quickly and without making to much mess. Our floors need to come up in at least 2 rooms and we will need to redecorate at least 2 walls per room, it will be messy but it needs to be done!

We are waiting to find out on Wednesday if we can go to Northern Ireland at half term, we need to be out of the house as we will have no electricity. It will be nice to see my siblings and brother in laws as well as our 2 nieces and nephew. Hopefully the paediatrician will give us the ok!

I had a miracle today. The hospital where I have to take Joel is building a new carpark so it has closed one of the current ones leaving a mass shortage of spaces. Last week I tried for 35 mins to find one and was slightly late to our appointment. I was talking to our electrician who lives in the area who has a friend who has a double driveway 5 mins walk from the hospital. She phoned tonight to offer us the driveway at any time. Not only will it save me a lot of stress but money too. How cool is that? The lady has never met me but is willing to share her drive with me.

Also, when we arrived home yesterday our neighbour arrive with a pumpkin from her allotment for us to cook or carve. What a great neighbour. I am not sure if I have ever seen a dirty pumpkin before, only the shiny, clean ones from Tesco!

At last a family photo with all four of us standing up and with clothes on!

Another week

A week has passed by so I thought I would fill you in. We went to visit our paediatrician ( who is wonderful). Frustratingly, Joel only put on 3 oz in 9 days and is not thriving enough, so this week coming we are off to see the dietitian and for weekly weigh-ins again. Joel will also be starting a monthly cycle of injections that should protect him from catching RSV or respiratory illnesses like broncilitis. He will get jabbed every 28 days until April. Tomorrow he is also getting blood tests taken to check that the medicines he is currently on are not causing any problems and then on Thursday we have normal 8 week jabs at the health centre and weighing and dietitian at the hospital.

This weekend we went to see the deer and kick leaves at Dunham Massey; the leaves are falling and turning colour. I love when they are dry and crispy. It was 'the big draw' so Emily had lots of fun drawing on the paths with chalk. (J had fun too!)

No pumpkins, leaves or trees in our Autumn pictures but, we are all in it!

On Friday we went to Blackpool to show Emily the lights. We had fun, it was a shame we couldn't make it on to the sand, the builders were redoing the flood defences. It rained quite heavily so we ended up in the tower at soft play. (again, J had fun!)

Smiles

We have lots to smile about so we thought we would share them with you. We have started toilet training with Emily - pants are more fun on your head that your bottom!

Tube on the right as he pulled it out yesterday and we swap sides
every time to allow his skin to heal.

A new hat - french style

All smiles at bath time.

Not so much smiling from Joel, but he was getting squashed by big sister!

This week Jamie is still on Paternity leave - Yeah! we are the consultant paediatrician on Thursday, we wonder how that will work out!

Miracles

They really do happen.
Growing up and being part of a community of faith you always hear of miracles happening. Big ones and small ones. I am sure there have been many in my life some I have bee aware of like passing my driving test and getting a job closer to home after my disastrous first teaching post etc, but others that I have been ignorant to. Well... today we had a big miracle and one that I am very aware of.
Joel had his cardiologist appointment. She was pleased with his progress and thinks that the hole may be closing. She told us that it is still loud and unrestricted but there is evidence of tissue growth around it. She has upped his medication as he has grown and feels that if he continues as he has been, there is a 60 - 80% chance that it will close over the next year. we are being monitored fortnightly by the paediatricians and consultants at the hospital and if he continues okay we will not been seen by her until December or January.
In the meantime his feeding tube has to stay as his heart progress is linked to him growing and reducing the amount of stress put on his heart by feeding, he needs medicine to help him digest the milk ( that is a real struggle for him and causes him to be in pain.) and he has his medicines to help protect his lungs.
Wow, a real miracle as Jamie and I had prepared ourselves for surgery and the difficulties that brings. Surgery has not been totally dismissed but it feels like it is further away than we thought.
So tonight we go to bed giving thanks to God and to all who have and are supporting us in a variety of ways.