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My new blogspot!

Posted by Addems on July 14, 2012 at 12:30 AM Comments comments (0)

I now have a new blogspot at rudyaddems.blogspot.co.uk  where you can keep up to date with my adventures. Look forward to seeing you there!

Hugs and kisses Rudy x

Fighter Jett!

Posted by Addems on July 2, 2012 at 3:30 PM Comments comments (0)

Rudy's friend Jett lives in Omaha America with his mommy and daddy Tennille and Cody, he too has PCH. It has been great to be in close contact with them, to share our very similar lives, the highs and lows and of course support each other. Whilst we were having fun at SandyballsHolidayPark Jett was flying to Dallas to star on the Glenn Beck Show! Jett has an amazing blog (Fighterjett.blogspot.co.uk) where he shares his day to day adventures. Glenn Beck picked up Jett's story and invited him and daddy Cody on to the special fathers day show. Like us Cody and Tennille love to travel and see the world but have had to accept this isn't something Jett is going to be able to do. Instead his family came up with the brilliant idea for the very cute Jett tshirt, the cost of the tshirt goes to Jett's medical care and they ask that where ever you travel in the world you take a picture of yourself in your Jett tshirt! So far Jett has been very busy visiting Australia, America, England to name but a few! It was amazing to see Jett and Cody on the Glenn Beck Show, amazing to see something so positive come from there situation, they too like us have chosen to take a positive path on this journey, so proud to know them. Of course Rudy's tshirt is on its way and well post a pic of him in it as soon as it arrives! We had a great weekend at SandyBalls Holiday Park, Rudy was on brilliant form and we even took him swimming for the first time, he loved it and looked so cute in his swimsuit! We had picnics by the River Avon, went on a bug trail, played in the parks and Rudy even ate ice cream in the Italian restaurant. (I will post pics in our album). X x

Rudy's new equipment!

Posted by Addems on June 8, 2012 at 4:00 PM Comments comments (1)

We have had a great few weeks with Rudy, he is laughing and talking to us, it's just the best thing ever to see him so happy and doing things we never thought he would. I've also really enjoyed being part of an online group of mums with children with pch. It's been great to see there gorgeous children and gain so much knowledge on the condition. One of the mums on there lost her little boy joshua at 14 weeks old, he had pch1. In his memory they have set up the Joshua deeth foundation, what they have achieved is amazing. We were honored to be asked to include Rudy in there annual fundraising ball. They had a slide show of the children and named the tables after the children. They raised over £4000 on the night which will go towards publishing a book on pch. I was honored when nicola Joshua's mum asked if we would include our story in the book, the aim of Rudy's website was to help other families who may have a child diagnosed with pch, so I couldn't be happier to be able to do this. One of the things that I have learnt from the mums is that all the children seem to suffer with acid, reflux and wind. They recommended medications for Rudy and following a chat with our gp he has prescribed rudy lansoprazole, so once again thank you mums!!! We had our appointment at chailey posture clinic this week, which was great and went really well. They are going to provide Rudy with a squiggles sleep system, bath seat (so he can really enjoy his special bath with lights and bubbles) and made a mould of Rudy sitting his best position to make him a seat that can be fitted into his push chair and also fitted onto a beanbag as an indoor seat. We also had new life charity come and fit Rudy with a new rear facing car seat! It's great for him to be in a proper fitted seat, so kind of them to provide this for us. We're taking daddy to Sandyballs next weekend for fathers day so will be great to know Rudy is comfy in his new seat. I also bought Rudy a special swim suit this week meant to keep him extra warm in a pool so I'm looking forward to taking him swimming for the first time. Rudy is chatting away and gigglying at his light up duck next to me so I'm going to go play with him now! All our love nicola and Rudy x x

Rudy smiled and first tooth!

Posted by Addems on May 18, 2012 at 10:15 AM Comments comments (0)

Hi Everyone

I thought Rudy had bounced back quite quickly from his cold and chest infection but unfortunatly on Monday I was worried for him. After rushing him to our GP he sent us to hospital for a chest xray, which showed he had an infection in his right lung, so he has seven days of strong antibiotics. I dont actually think the chest infection was causing Rudy pain it was his tummy, as on arrival at the hospital he did a huge poo and was then as bright as a button! The dietician changed Rudy onto a higher calorie milk with fibre in now he has turned one but i think it is bunging him up. Monday was a tough day emotionally, it was the first time Rudy has had to go into the hospital  and for me it was a big reminder of the situation we are in. Day to day we get on with life and all the time Rudy is fine we are fine, but now when he gets poorly we both feel this terrble fear of where is this going, could this be it. 

Ive found great comfort this week in having contact with other mums of children with pch, its been great for me to look at there websites and blogs, so thankyou Sonia, Summer and Tennille for sharing your stories of your gorgeous little angels.

Our palliative nurse Kirstie visited this week as she has contacted a charity and asked them to provide Rudy with a rear facing car seat. She also managed to get us an earlier appointment at Chailey, a place that we had been referred to to get Rudy some proper made to measure seating. I was shocked and upset when i was shown Rudys chest xray at how bent his spine looked. Now hes turned one he needs proper supportive seating. 

After a few weeks now of Rudy being poorly we have had no smiles so today whilst laying on his beanbag watching his new fibreoptic lights he smiled, it made my day. His first little tooth has just broken through at the bottom as well. Also today we have been to Millers school jungle dance where me and Rudes sat in the front row and cheared on his big brother, Rudy actually seemed to enjoy it.

We have a few appointments next week, so will keep Rudys blog updated with any new news or events.

All our love Nicola and Rudy x x


My first ever blog!

Posted by Addems on April 30, 2012 at 4:45 PM Comments comments (0)

Hi everyone, my first ever blog and all ive got to say is my two little men are poorly! Rudy is snuffling next to me on his duvet, bless him. Hopefully they will both be better soon and I can write something more fun or interesting?! All my love Nicola and a snuffling Rudy x x


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