This Week

The first week of holidays is always welcome. It started off with the promise of our washing machine being fixed (this didn't happen). Tuesday was a day with Kiran at Harrow. We had a great session at Gymboree and then shopping time. The theme for Gymboree was Push and Pull. We played with balls, pushed the air log, sang, danced and of course climbed. Kiran's friend Indraneal was there, they played well together. Wednesday Kiran went to Nursery so I could finish my studying - yippee, it's all done! Thursday the weather wasn't great but we went to Odds Farm with Kiran's Godmum, Bridget. Kiran loved all the animals. He was able to sign or name most of the animals and loved the huge slides, bikes and the open spaces for running around in.

Pride, pride, pride

Yip, I am very proud of the choir that went to The Royal Albert Hall. They had a very long, at times boring, day and performed brilliantly. All of the parents came to say 'Thanks and they enjoyed it'. That is a rarity in teaching these days. Unfortunately the role of a teacher has taken on more social work and many parents now expect more and more. So it was great to get such a sincere thank you. The kids performed really well and even were commented on by another school. When I signed up for the performance I didn't realise that I would be performing as well - I did ok. What a great honour to perform at the Royal Albert Hall.

Royal Albert Hall

Today was a great Mum and Son day. Ian was off doing a garden and K and I had a great day in the backyard playing in the tree mansion. The neighbours came over and had a great time.

Tomorrow I am taking my school choir to the Royal Albert Hall for a concert. I can't wait. It is a very prestigious opportunity to sing there. It will be a very long day. We won't be back til way after 11. Ian and Kiran have tickets so hope Kiran is ok. He normally is ok with a late night as long as he can see things happening.

I am now on holiday - yippee!

One week on ...

I have been really busy at work. We have our link school Headteacher visiting from Uganda. We have eaten out every night and taken him around the sight of London. He leaves on Sunday. Watch this space for an update.

Kiran has had a bug since Thursday night. Very messy and not the best time in the world for the washing machine to break down - grrr! Ironically the bug does not effect Kiran's enthusiasm or energy. In fact he thought it was funny being sick - weird kid! As for the washing machine - hand washing novelty has long worn off. Hope it can be fixed soon.

On Sunday my choir will be singing at the Royal Albert Hall. I am really looking forward to it.

Roll on the weekend and a long needed break.

Seven!

Thats how many test tubes of blood they took from my arm today. They are investigating the antiphospholipd syndrome for lupus as well. We wait til 30 June to see what comes of that.

The weather has gone very windy and cooler today. There is even snow in Scotland.

Kiran made a beautiful picture today. He was very proud of it. He jabbered away for ages telling me about each perfectly placed splotch (I mean artistic rays of light).

Not much else happening here. Although I did reconfirm today that Ian can't read maps!

Happy Mothers Day

To all the mums out there, hope you had a great day.

I certainly did. Firstly Kiran had a sleep in til 8:30 then we had great time watching the Muzzy video. Kiran thought it was hilarious when I threw the washing in the bathtub. (Our washing machine blew up yesterday). We then went outside to hang it out, Kiran was straight into his tree mansion. He hasn't seen it for at least 3 months. He had great time with the balls and hammering etc. Then Kiran broke another record and had a sleep for another 4 hours. We raced up to the shops and got some fresh mint for dinner. By the time K had his dinner and was in the bath Ian arrived home from the contest. They got third - woo hoo!

Time for bed now. I am off to the hospital again tomorrow morning.

World Down Syndrome Day

Today is a wonderful day to celebrate all those very talented people out there with their extra chromosome. I am very grateful to have Grace in my life. She has shown me so many fantastic qualities that make a super person.

Today, in her honour, I am officially announcing that I will be running the 10k London Run for Down Syndrome. Date: July 12. Training is going ok. I will post more about this later.

To support a wonderful organisation that doing amazing work with kids for with the extra chromosome please visit http://www.reecesrainbow.org/

Kiran's birthday party. He is now 2. Weighs 10kg and loves life. His cake is a big red bus.

New Beginnings

Hello Everyone, yes, we are still alive and kicking.

Last year was definetly a whirlwind of emotions.

In February I started back at work. Firstly doing all sorts of teaching around the school and then in May became the music teacher for Years 4 - 7.

Kiran continued to grow, slowly. He continues to put on weight slowly(At this point he has just made 10 kg and is in the bottom 2% for his age range. He spent 2 days a week at daycare and 3 at a childminder. In between all of this Kiran had many many appointments with dieticians, surgeons, gps, speech language therapists (for eating) and hospital teams.

I had another miscarriage in July and was sent to a miscarriage clinic where they have done a mountain of tests. It turns out I have a blood clotting disorder called Antiphospholipid Syndrome. Plus a couple of other minor complications. Anyway with all of them together it really does make Kiran our little miracle.

Ian is still at the same place, working , well can't really say working hard. He has changed employers and is about to change employers again.

Tomorrow is World Down Syndrome Day. I will be posting about my new challenge then.

Our Big Little Girl

We were so excited the day we got to introduce Kiran to his 'big sister' Grace. Grace was totally unaware that we were coming. On arrival Grace recognised us and fell in love immediately with Kiran. Within 2 minutes Grace was cuddling Kiran and telling him stories. Then Grace went to get some toys for him. She came back with several Barbies. Kiran didn't mind. He thought they tasted great.

Grace was also very proud to tell us that she now has a boyfriend. They met at the special olympics. He has written her the cutest love letter and has even asked if Dad will build them a house. Love is so sweet! Watch this space for further developments.

Christmas Day

Ian arrived at 6 a.m and was picked up by Sean (for which I am truly grateful for the sleep in). He got to us about 8:30 am (apparently after a McDonalds breakfast). Kiran had been a perfect delight until that exact moment and burst into tears when he saw Ian - oops.

The rest of the day went off really well. We opened loads of presents. At 3 o'clock Shane (my brother), Amy, Caleb and Zoe arrived for more presents and the traditional Christmas dinner of Turkey, ham, roasties, cranberry sauce etc. It was a really nice day.

I will attach some photos when I download them. I only have 528 to choose from!

Where has time gone?

I can't believe it is almost 2 months since I last updated this site. To say things have been a whirlwind is certainly true.

After Kiran's operation things continued to go well. We went to a follow up appointment and discussed the problems we were having with his gagging and choking. Apparently this is quite common as the stomach has been tightened and can't burp now. So we are to continue using the syringe to allow him to burp. At this visit we were given the all clear to travel - that was lucky I had just booked the tickets for NZ for the following Monday. It was touch and go with many visits to doctors, phone calls to the people that supply Kiran's medical equipment and emails to Nz to see if they could supply some of the equipment and medicine. But we managed it. Kiran and I flew out to NZ on the 12th of December.

The flight was very uneventful. I had set myself up for very limited sleep and many apologies to passengers that were giving very dirtly looks (have to admit I have seen this a lot on my previous travels). Anyway Kiran traveled perfectly. He fell asleep as we taxied out of Heathrow and woke up 12 hours later as we landed in Hong Kong. The airline (Air New Zealand) were fantastic. They had arranged for us to be met off the plane and carried my bags and led me to the front of every queue and then back onto the plane. We had many passengers come to tell me how wonderful Kiran had been on the flight - I was a very proud Mum! Again when we landed in Auckland we were met and led through all of the security checks and even picked up my luggage (there was alot because of Kiran's huge medical chest) and stayed with me right up until they handed my trolley over to Mum and Dad who were there to meet us.

We got into the car and traveled on the short journey into to Swanson to discover the roofers had arrived and iron, nails and semi naked men were all over the house. What a noise. My plans of having a nice sleep for a few hours while Mum and Dad looked after Kiran went out the window - crash! Kiran, on the other hand, managed to sleep really well, totally oblivious to it all.

The next few weeks were busy with meeting relations and friends and of course preparations for Christmas day.

My Angel Baby

To the baby that I carried

But never seen your eyes

Or tell you how much I loved you

Or ever to hear your cries.

You will never be forgotten

The excitement we had for your coming.

When I realized I'd never hold you,

The feeling I had was numbing.

My angel baby is who you are.

My angel baby you'll always be.

Your loving memory will live in my heart

So you will always be right here with me

He's Back!

Kiran is back to himself. He bounces continuously whether he is sitting, standing or lying down. Commando crawling is his favourite way of getting around although mainly in circles still. He is beginning to straighten his arms and push his bottom up. We don't think it will be long before Kiran masters the art of crawling. We are very thank ful that Kiran had his operation as he can't get tangled in the tubes.

On the menu tonight was partridge. Very yummy. I did it in red wine and garlic with a huge amound to roast veges including butternut, kumera, beetroot and of course potato.

It did get cold today. They were predicting -6 in some areas. Fortunately it didn't get that cold. If anyone has any bright ideas on how to keep gloves on Kiran's hands please let us know. I have fixed the hat problem by investing in some hoodies (from good old Primark).

Tomorrow we are off to Harrods where Kiran will have his first Santa encounter. We figure he will either be nervous and cry (like his father) or pull Santas beard off (he is intrigued by everybodies face, in fact my face has got several scratches on it.)

Have a look at the www.reecesrainbow.com you will notice that there are a whole heap of kids from all over the world heading for new lives because their forever families have found them. This is because of all of you that have looked at the Angels and sponsored them. Thanks so much.

Where did that week go?

We have a truly amazing little boy. It is hard to believe that he is almost back to his normal self and not even 2 weeks after his four hour operation. He is bouncing around the floor. He is doing everything he was except rolling onto his stomach (I can't blame him for not wanting to roll onto his tummy - ouch) The wound is healing really well.

This week Kiran has 3 appointments he is having his 8 month check again as I didn't feel like the first one was done properly. On Tuesday we are off to Chelsea and Westminster for Grant the Gastro nurse to check out Kiran's progress and then Wednesday back again for Kiran to have his swallow test done to see if he can have solids.

Kiran has been doing really well on his bolus feeds he is tolerating 55mls straight into his stomach instead of the 55 mls over an hour through the machine. It is much quicker and means there are no tubes for Kiran to play with and wrap around himself. Yippee!

Ian went to a band contest in Leicester today. They came second. They are very happy with the result.

It has turned very cold. It was -2 today and raining. Come on New Zealand and warmer weather.

Thank you to all the people that have supported Reece's Rainbow. If you haven't already watched the videos do so.

We're Back!

Kiran's operation was a complete success. The surgeons and everyone involved were very impressed with how Kiran recovered. They say he is almost the quickest ever. He would have been if the weekend hadn't have been in the way.

He ended up having a Nissens Fundoplication via keyhole surgery and then the G- tube was inserted laproscopically using a camera down oesaphagus. While using the camera they said they could see the Nissens procedure from the inside and how well it looked. It all took about 4 hours to do. When Kiran was in recovery we were taken down to see him. Kiran looked up at Ian and gave him a smile before going back to sleep. He had his g-tube which was connected to a draining bag, 1 canula in each foot (for morphine and antibiotics etc) He also had monitors for hearbeat, oxygen etc. From recovery Kiran went to the High Dependcy Unit because he small and also had a nurse and dr in the room with him. I wasn't allowed to stay in the HDU because there wasn't any room for parents so I stayed in the hospital hotel for the night. At 7a.m. when I got down Kiran was being moved back to the ward as he was doing really well. He continued to do well and by the afternoon when Ian got in to visit most of the wires etc had gone. By Thursday evening Kiran was only on paracetamol for pain relief. He continued to do really well.

On the first evening Ian and I were watching Kiran sleep and both jumped as he lifted his hands to his face. Then we both realised there was no need as there is no nasal gastro tube anymore.

Now Kiran is almost back to his oldself. It is only 5 days since his operation.

I am in need of a lot of sleep and have a bit of a cold but other than that I am great.

Gymbo, Kiran and Ian

Today we used the last pass for Gymboree. Kiran showed Ian how much fun it was. He went on the slides, barrels, spinning tops, ball tunnel etc. (Kiran that is not Ian). Typically we took loads of photos.

Tomorrow is a hectic day getting ready for hospital on Tuesday so I am going to post some photos and then off to bed.

Fireworks and Ops

After Sing and Sign this morning we got home to a large envelope. It was a date for Kiran's surgery. It wasn't the 6 weeks warning we were told. It wasn't even 6 days notice. He will be admitted this Tuesday and the op is scheduled for Wednesday. We don't have a time or any other information yet.

Another first for Kiran, tonight he attended his first fireworks display. He loved it and didn't even fidget or fuss at the huge bangs. He followed the colourful fireworks and was watching them even as we walked off and they were off in the distance.

This Week

Kiran has had a lot of firsts this week. The biggest and most exciting is that he was allowed to try solids. They recommended carrots so we tried. It wasn't successful. Choking, gagging etc The next day we tried him on baby rice and neocate. I made the mistake of trying it and it was awful! Anyway Kiran didn't mind and enjoyed it. Today I mixed the baby rice with water. It was all eaten in about 5 minutes. I had to stop him blowing raspberries while eating it but he did really well.

Halloween was on Wednesday. Kiran wore his Little Devil outfit. Everywhere we went people commented and oooohed and aaaaahed. Eventually I had to admit that I had bought it for 75p from the charity shop( I love charity shops - NZ needs to get some). But that wasn't the bit I had to admit to, I thought it was a Santa Suit until I got it home. Ooops. We only had 10 Trick or Treaters at the door. So there are an awful lot of chocolates left over - shame!

Do you remember the image of Kiran being a dog chasing his tail eg going around in circles (but only in a clockwise direction? He can now turn the other way. He manages to get everywhere he wants (and I don't) by commando crawling in circles.

Yesterday Kiran had his 8 month check. He now weighs 7.6kg which is 16 pounds something. He is going to be referred for his lazy eye. We got a pack of books and brochures on how to read to your child! Kiran loves his books and Ian reads to him everynight as part of his bedtime routine. The Health Visitor was quite happy with him and using his corrected age (eg taking into account being prem) he is advanced in some areas and on target in all areas.

Due to new health and safety regulations (boy, you gotta love them - aaaaahhhh) all of Kiran's medical equipment has been changed to screw tops. The only positive is that they are purple.

I was very proud to see my friends embrace the Reeces Rainbow Charity www.reecesrainbow.com that I support. THANK YOU for giving these great kids a chance at a Forever Family. We still think that Kiran looks like Phil (if only there was a way to adopt him)

Finally, Kiran has been an absolute delight. He smiles, gurgles, has developed a sense of humour and been a trouper. Have I mentioned how much we love him?

Kiran's Twin

Differences in Lives,

Kiran gets a cuddle everyday (and not just one) Phil doesn't even know how good it is to have a cuddle.

Kiran has enough food everyday (and it's a variety and interesting) Phil doesn't always have enough food and sometimes goes to sleep hungry.

Kiran has a lovely decorated cot and a musical mobile that puts him to sleep at night. Phil cries himself to sleep.

Kiran has so many clothes he didn't even get to wear some of them before he grew out of them. Phil wears the same clothes day in and day out.

Kiran has so many toys that he needs yet another toy box. Phil amuses himself in his cot all day.

When Kiran turns 4 we will be planning his move to school etc. When Phil turns 4 he has the treat of being moved to a mental institution where he can not be adopted.

Kiran has two parents that love him very much. Phil deserves this chance too!

Every child on the Reece's Rainbow website deserves to be part of a Forever Family.

Please help us to help them visit www.reecesrainbow.com

For a christmas present that will make a difference visit http://www.reecesrainbow.com/angeltree.htm