Thanks Be To God.

Well, I had hoped I would be writing this but now that I am it feels weird and I can't quite believe it.

1. The cardiologist uses the words, 'optimistic' and 'realistic'. The future looks good however things may change and we are not there yet.

2. Joel's hole IS closing and has got smaller.
3. It has gone from unrestricted flow - back and forth, to restrictive flow - just one way.

4. It has high pressure and volume as it is like a hosepipe, but that is good.

5. She thinks we can take his feeding tube out and 'experiment' with feeding him via bottle and spoon. The reason it's an experiment is that Joel needs to learn that he has to feed himself by sucking. Also it requires more energy to feed yourself so his weight may suffer so we have to balance that very carefully as he is so light in comparison to his birth weight. We meet with the paediatrician and dietitian next Thursday morning.

6. We are back in 3 months.

7. We are amazed and stunned and hopeful that this may be the beginning of the conclusion to this chapter of life. We are also cautious as this is a tricky balance between tube in and tube out and weight gain and weight loss. Also, the cardiologist was very clear that Joel may still need intervention and his next appointment will bring more answers.

For now, we are grateful for prayers and best wishes; we are so, so pleased that we can report such happy news. We feel that God has been and is with us on every step of this interesting journey.

Joel is such a great little boy and is coping amazingly with the hurdles he clears. He has a very bad cough with a lot of mucas which is causing him to vomit his milk at least once a day which is not great as he needs the calories.

Now we can make some tentative plans, holidays, visits to friends and a Christening!

Thanks be to God.

It's great to be a mum of two

Last night I got my first night of full sleep since Joel was born over 5 months ago. I say full night but he was awake at 4.30 looking for a dummy! Still it feels good to have one under my belt. Maybe tonight will be another.
Just some pictures of my great kids, they bring so much joy and laughter into my life - they really are amazing. Joel has a big week ahead with our cardiologist appointment on Thursday. We are hoping for a miracle and are prepared for whatever the outcome may be. For now we send smiles to whoever reads and ask for prayers for Thursday - prayers for courage regardless of the journey we have to make.

We made it.

From this back at the beginning of September...to this today.

Joel made it to 6Kg. He is 6.17 Kg or 13lb and 9 oz in old fashioned speak. He is now the weight he needs to be to have surgery should he need it. (We hope that next week when he has his scan, the cardiologist will announce that there has been a miracle!)

We can't believe that he has made it; sometimes through tears (from emotional me!) and tantrums (again from me!) and disappointment, as well as guilt (are we doing things right? is it our fault? are we trying hard enough?)

The one thing that we do know is that we are here and are grateful for love and prayers from far flung corners of the world, from friends old and new, from family near and far.

So, we wait for news a week on Thursday, we pray for a miracle and know that it could happen (I heard his heart yesterday at the Dr's as he has a cold - it sounds the same as before but you never know what's going on til you see the scan.)

Two for Tea

Not started weaning yet but Joel has been 'elevated' from bouncy chair to high chair. Soon the food will fly.

Joel no tube...

Joel pulled his tube out today. before the nurses came to help us learn to put it back in I took some pictures. Joel is now 13 lb and 3 oz. Very close to 6 kilos. :)

Science

Today we went to the Museum of Science and Industry to see the trains and planes. (Emily loves public transport!) We had fun looking at all the engines and pumps as well as the 'hands on' activities. We made a rocket and fired it using air. We even managed to hit the member of staff standing nearby.Thankfully tears were absent as it returned to earth in one piece and brought home with pride. It is amazing what you can make with paper and sticky tape.

We have also been busy baking cakes and making chocolate rabbits. Sadly the rabbit has passed on to the other side now and was greatly enjoyed. The cakes are demolished too!Joel had his appointment with the dietitian yesterday. All is ok, he can be weaned like a regular baby only we are not allowed to use traditional formula. We can also give him more of his milk in a bottle if needed. This might stop him from waking between 2 - 5 times a night with hunger. The downside is that his milk already causes issues with his bowels so we have to be careful how much we give him. Our cardiology appointment has been rescheduled til the end of January so hopefully some questions will have answers.

Meanwhile Emily, Joel and I have started a really fun group at Charnwood Nursery. We are going to the Opportunity Group on Friday Afternoons. We had our first one yesterday. It was great. The staff and other families there are really friendly. Emily had so much fun playing in the home corner, sunken sandpit, soft play and trampoline as well as the other activities provided. It was nice to be in an environment where Joel was Joel - not the boy with the tube. Hopefully there will be a place for Emily to go there in September for a few days a week. We will wait and see and in the meantime enjoy our Fridays.

photos

Snow and ramblings without photos

Snow has arrived and gone. Emily had fun making a snowman with Grandmum. Wish the snow had of stayed so we could have made a family but alas! The rain has come.
We have made Joel's room livable (does it have an e?) again - still needs painting here and there and personalising with his bits and bobs but he is now having his daytime naps and evening sleep in there. He looks so small in such a big cot! He is still in our room during the night as he is hungry in the night and as formula is not a choice he will be hungry! So him being hungry = me being tired! He is now 5.88 kg so close to the magic 6kg. Sadly his cardiology appointment has just been cancelled for tomorrow and rescheduled for 29th so the questions remain and will be answered later rather than sooner.
Emily's room is nearly finished too. We just need to touch up the paint from the rewire but she has a girly haven to hide and find fun in. Her favourite game at the moment is making dens with cushions and blankets.
That's all for now, our niece was dedicated last Sunday - we couldn't be there but on a happy note our nephew, Sam, is having his at half term and we have just booked our flights! Woo Hoo!

Photos will follow - it won't let me tonight for some reason!

Christmas Break

Just a photo diary of our Christmas Break. Sadly no McCulloch family picture - not sure how that happened, need to sort one out. They are muddled up in order as I have not uploaded them int he right order! We spent Christmas at Dave and Nic's - delicious and lovely, then went to Belfast from Sunday to 1st and had another delicious and lovely time. We had a busy, but lovely time. Back to normality tomorrow. Joel has medical appointments every day this week apart from Wednesday. Tomorrow he has 4 jabs, Tuesday weighing, Thursday cardiologist and Friday, dietitian. Busy, busy, busy.

On the train on the way to Panto

Emily's playdate with friends. Christmas baking. Messy but fun!

Cuddles with Uncle Del, before he took sick.

The boys: Joel with daddy and god-daddy

Playing ellyphant wellyphant.

Trying on the new dressing up shoes and tiara from the new dressing up box.

Lilah holding Joel's hand - what a cute cousin.
Granny and Granda with their 2 bigger girls!

Emily enjoying a tutorial with Papa and Daddy on the 'itouch'

The five cousins, Joel, Emily, Sam, Lilah and Ellie-May

Little Lucas, our nephew with grandmum.

The Patterson, Croker, Fawcett and McCulloch Clan (Delwyn was too ill and couldn't make it.)

Joel with Sam his cousin, who is 2 months older.

How much mischief will these two get up to?

She needs to learn to ride it and a new helmet.

All grown up and ready for turkey dinner (or mummy milk!)

So excited, just a little boy in a big boy's body!

Thank you all for the lovely pressies for them both. Santa brought the bike.
Thank you for a lovely Christmas and for all the gifts. Happy New Year to you all.