What a week!

Monday

My parents arrived from Australia for the week which sent Daniel and Max into a whirlwind of excitement. No time for recovering from jet lag with the Rigby boys around.

Tuesday

Shane and I had our first appointment with a family therapist. Daniel is starting to notice that he is different from the other kids and also that there are some things he can't do physically. We thought it would be a good idea to see a psychologist to come up with strategies for how we can best help Daniel with this and also coping with all the hospital visits. We didn't bring Daniel with us for the first session so a large part of the session was about us and how we coped at the beginning and how we are coping now. It was hard work, I spent most of the session with a big lump in my throat. It was really worth it though and was something I should have probably done 3 years ago.

In the afternoon, I got a call from Daniel's nursery to say that I should pick him up because his leg was really sore. When I got there, he was really sad and couldn't walk on his leg. It is difficult to get a 3 year old to describe the pain and his pin sites seemed pretty good so I took him up to Accident & Emergency to get an x-ray. Daniel is such a pro at these now. He laid on the x-ray table playing games on my iPhone, only looking up to say cheese when they took the x-ray. The x-ray didn't show anything sinister which was a relief. He probably strained it. We also sent the x-ray to Dr Paley's PA, John, who said it was all okay.

Wednesday

We heard back from the NHS and they have agreed to fund us to go back to Florida to have Dr Paley remove Daniel's fixator. Yay!! So we are all booked to have the fixator removed on the 13th September. No celebrating yet though until Dr Paley actually comes out of the operating room and tells us that the fixator is off!! But it is a big relief to have the funding come through. I can't believe it has been a year tomorrow that we submitted the first funding application.

Thursday

Today was Daniel's 3rd Birthday!! He was still a bit sore but having a birthday was a great distraction. It was very much a Toy Story themed birthday - he added Slinky Dog, Woody, Jessie and Bullseye to his collection. He went back to nursery with instructions to take it easy. Yeah, right! He had a little party at nursery with a Paddington Bear cake and Toy Story party bags for all the kids. After nursery, he came home for a second round of presents and another birthday cake. He was very excited and full of sugar so it took a while to get him to bed!

Friday

Today we had to take our little Max for his first (and last we hope!) surgery at Great Ormond Street Hospital. Max had to have a small birthmark removed which was minor surgery but he had to have it done under general anesthetic. It is never easy, but Shane and I are coping better with these now. The surgery went well. Max was pretty grumpy for a while afterwards, his throat was pretty sore. We gave him a Buzz Lightyear as present for being a brave boy which brightened him up. Daniel has one but Daniel doesn't let Max near it. Max was back to being his cheeky self pretty soon after. Now we just have a week of making sure he doesn't knock the wound site. Talk about an impossible task!

Saturday

So the knot I had in my stomach this week was gone, the crazy week was over. So I thought.... We woke up to an email from Dr Paley to say that there was a thin line on Daniel's x-ray which he didn't know what it meant and he will need to examine under anesthetic. Thin line!!??? The knot in my stomach was back. Trying hard to not think the worst. Does this mean the bone hasn't healed? I sent an email back to Dr Paley for more information.

Sunday

This morning I received an email from Dr Paley to say that the thin line may mean it has not healed but it may not matter because it is stable. Not sure what this means in layman's speak but he also said that he is happy with the way it looks. I am feeling a bit better now. Now we just have the wait until 13 September to find out. For those that know me well, waiting is not one of my strong points!

My parents left the UK today. After the stress of this week combined with Daniel's trip in the ambulance through the countryside after a febrile convulsion last time they visited, I am not sure if their nerves could survive another visit with us!

The roller-coaster week is over and thankfully it was a long weekend this weekend to recover! Then next week we are off to Florida for some more rides on the roller-coaster of life!

Posted By Kristen (Daniel's Mum)

A video of the boys walking in the park while Mummy has a sleep in. Walk carefully boys....please! Daniel, don't strain your leg and Max, don't fall over and knock your wound site! I know, I know - I am a Mum of two boys, I can't wrap them up in cotton wool all their lives but seriously, there is only so much I can handle in a week! :-)