November 5, 2005

Wednesday’s appointment at Children's went okay, her ankle looks good, but they are concerned about her neck... if things are not improved (or get worse) by January then we will increase her medications which means she will have to have two injections a week rather then one... I ask you all to keep Sadie in your prayers; I don't know how we will convince her she has to do that twice a week. They had a hard time getting a good vain (her veins often collapse when she is stressed so they can usually get a vein, but the blood flow stops) this time they got a vein and then lost it almost immediately, they stayed in her arm and dug around until there was a visible bruise in an attempt to get blood moving. Sadie never talks when she is in pain; she will put up a fight prior to any needle, but once people are poking at her she is pretty quite. When this nurse couldn’t find her vain, Sadie had huge tears rolling down her face and she was whispering... "I want to go home", "I want to go home", "I want to go home" over and over with her eyes squeezed shut tight... broke my heart. The waited a little while and warmed up her other arm and were successful on their second attempt.

We also reviewed her x-rays which confirm that there is permanent damage to her right ankle; we are not too surprised. All we can do at this point is our best to keep her arthritis under control and hope that no further damage occurs.

Sadie is battling a cold, but the cough has the doctor concerned and if it isn't better by next week she wants her to come back. She reminded me that Sadie is on so many anti-immune drugs that a cold can easily turn to infections and now that this cold is three weeks old we should really be watching it carefully. At this point the cough comes and goes and I am seeing some improvement, we will see by Tuesday how she is doing.

We only have 37 days until the Jingle Bell walk; that means our current team (hopefully still growing) needs to earn about $99.00 a day to reach our goal. If you haven’ t put a donation towards this cause I ask that you look at what you can spare as ever dollar raised helps. Sadie and I had a conversation while at the doctors about the walk and why money is needed for this cause; I explained to her that one day there will be a cure and hopefully prevention… I told Sadie “When you’re a mommy I hope you will never have to worry about your child going through all this”. I have said this before and I will say it again – there is a cure out there, I know there is, but without the funds to do the research millions of people are living lives in pain. Millions more are diagnosed every year. ONE IN THREE – that is a BIG number! Please support our cause – visit http://www.seattlejinglebellrun.org/site/TR?px=1018941&fl=en_US&s_tafId=-1&pg=personal&fr_id=1010.