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We hopefully will be updating this more regulary this year. 2007 will be a big year for us with the arrival of a new Brother OR Sister for Natasha and Alex in March.
 

Well we are still awaiting the arrival of the new baby but as I haven’t written anything about Natasha for so very long I thought it was a good time to update on what’s been going on.

Natasha has been doing so well this year and that is probably why I haven’t felt the need to keep updating so frequently. But good news on these sorts of pages is very important. So here is a quick catch up.

Natasha had her last IVIG in the last week of January and we saw Dr Rudge early in February. Dr Rudge felt Natasha was doing so well that she could have a break from the IV’s and just carry on with the methotrexate and we would see how she goes with only that. We also had a quick visit from Dr Yan as well. It was nice to see here back in NZ.

So far so good Natasha is really enjoying her new school and has joined in with all the school fitness programs with the other children. Natasha has joined the Netball team and entered into the school swimming competition. Natasha came second in the 100m freestyle at the tryouts so she will now be in the interschool comp coming up on the 20th March. As far as general fitness goes at school she seems to be doing ok. One afternoon she complained to me about running around the school field and how she was about 40^th out of 60 children. All I can say is WOW that means she is fitter than at least 20 other kids with nothing wrong with them and that’s fantastic. I am really proud of the way she gives things a go
 

I have noticed that Natasha seems to have a bit of a red face again when she is playing netball. I am hoping that it is just her getting hot playing full games as some of the others are a bit red in the face after the games as well.
 

The blood test results showed Natasha’s Ck as 566 which is way above normal
 

I have tried to contact both Dr Rudge and Dr Yan but they are both away this week so Rick will be taking Natasha to see the GP tonight.

GP has requested another blood test as the last one was taken straight after a netball game and she thinks that may have affected the results.
 

The second blood test has come back as ck626 so the GP will try and contact someone at the hospital to get advice on what to do now.

GP rang back she managed to talk to an adult rheumatologist, who suggested putting her on 2ml of steroids daily until Natasha’s Dr are back at Starship.
 

We have decided to still go up North for the long weekend as we had planned before we knew Natasha was sick again.
 

Well the weather was fantastic and the girls had a ball. They played outside building swings from tree’s, a ladder up one of the tree’s so Natasha could climb it and a giant Tee Pee out of Bamboo and blankets with the help of Rick. It was a great weekend so I’m really happy we went.
 

Dr Yan phoned today; she wanted to see Natasha ASAP so we picked her up from School and took her into Starship. She had wanted to put Natasha on IV steroids but as we had already started her on oral steroids she decided to wait and see how she went on those. The physio did a full assessment and as well and Natasha’s strength is still pretty good.
 

Well as I haven’t kept up to date this is going to be very general as I can’t remember exactly what we have been doing. This might be because of Baby brain after Natasha’s new baby sister arrived. Anyway after her little scare/relapse Natasha has been back to her normal self again, her Ck levels have come back to normal range and once again we are slowly trying to wean her off of the Prednisone.

Natasha is now absolutely terrified of blood tests as one of the nurses hit a nerve in her arm and it hurt so bad that it mad her cry. Then at the next test they couldn’t get any blood to come out and wiggled the needle in her arm. Poor Tasha was in heaps of pain and never wants to go back to that place again. Now she looks at me as if I am the most evil Mother in the world when I have to take her for one.

There are plans to take the "Kids With Arthritis" to LA for a conference next July which would be great as they are even covering JDMS

http://www.arthritis.org/ja-conference.php

But as I’m not at work at the moment we will be relying on the Arthritis Foundation getting some funding to at least get Natasha and a caregiver over there. I’d so love to go back to Disneyland we had so much fun there last time. Oh well time will tell we will have to wait and see how much funding they can get.

Natasha is to get braces in March next year but will be needing some of her Hypoplastic Teeth repaired before then so we are waiting for an appointment at Greenlane Hospital

Natasha’s Auntie Sandie (my sister), Uncle Jay and her cousins Matt, Sefa, Jessica, Tana, Georgia and Katie arrived from Australia on Christmas Day. We have had a fantastic time with them just hanging out at either our house or going to their rented house. Their rented house has a pool so that is where the kids prefer to be, but they have a great time together wherever they are.

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