A trip to the Seaside (in the fog and wind!)

It's great to be a mummy.

A Mummy to my very funny kids. A Godmother to a very grown up , nearly 10 year old , Lucy. A Godmother to my niece, Ellie-May and my nephew, Sam. I also have two great mothers. A mother who gave birth to me and has nurtured me and put up with me as I grew up and am still growing up, and a mother who took me into her family and treats me like her own.
Today has been a lovely Mothering Sunday, the first when my daughter can come bounding into the bedroom with cards shouting," Happy Mummy's Day, Mummy." So, so, so great.

And a great Husband who organised all the nice things for me today. x x

Peppa Pig

Emily loves television despite poor attempts at limiting it. She can be very fickle about her favourite programmes; but the two that rock her world at the moment, and have done for quite some time, are Little Einsteins and Peppa Pig.

Today we (stupidly) queued for one hour so that she could meet and have her picture taken with Peppa Pig. The things we do for our children! (But Jamie did remind me of my excitement when I met Mickey Mouse at Disney Land California. I was the only person in the queue who didn't have a small child in tow!)

Joel is well, he seems to be loving his food, especially his potatoes, a good Irish boy! Today he was anointed with oil in church for healing, as it says in James chapter 5. Jamie and I were reminded again that Joel is upheld and we are upheld in a community of prayer, a community of people who we know and don't know, who we have met and never met. A group of people spanning the globe who is praying for our son and whose prayers are being answered.

Thanks be to God.

Photos from the past couple of weeks.

With our Godson and nephew, Sam.

Building sandcastles on a cold February day at Belfast Lough.
At the park with Ellie-May.
In the Walkie at Granny at Granda's.

With Sam on his dedication day.
At the National Railway Museum, waiting for the carousel
On the Carousel but Emily refused to go on the horses so we ended up in the carriage!A rare shot of the 4 of us.

Cheese!
Joel is sitting up by himself (apart from when he lunges for toys!)

That's all folks... for now.

I Love my Rice.

Just a couple of spoons but they are nice.

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.)

How...

... do you loose 12 ounces in 7 days?

Is the question I wish Joel could answer for me! Hopefully the dietitian will be in a good mood tomorrow when she looks at his growth chart (which he no longer is on the scale!) and looks at how Joel is developing overall.

We will see tomorrow.

Snow.

It's been snowing here today and the first real time that Emily has seen enough snow to do something with. Jamie rushed home from work today and we built a snow man. Unfortunately by the time she was finished Emily was too cold to have her picture taken with her. (Judge for yourself what she was up to!)

Also, Joel has really found his voice and his giggles.

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