Hello Everyone,

Well, life has calmed down since I returned from the concert....hehe. I had infusion the Friday just gone. It went fine. Although, I am finding that I am more and more anxious each time I go. Not because of the IVIG itself but my arms are really quite tender and sore. All my veins are getting sore. They are needing to dig deeper and more to get a vein to use for the IVIG. Isaac turns 6 this November and I started having this treatment when he was about 10 months old. So I suppose I have been getting stuck for about 5 years, every 4 weeks for blood and for IVIG therapy. I know way back then they mentioned having some sort of port which would stop them needing to use my veins and I refused. Having a port makes me feel so abnormal and reminds me that I have the FA. I wanted to live free of any of those thoughts. I have really found the idea of a port very discouraging and have plodded along during the past 5 years with pokes. I have always had really bad veins that collapse easily. Now, my arms are getting sore and I am feeling anxious and because the platelets are lower, when they dig real deep and continually, I get the bruises which, in turn, make me upset. I know that people with normal platelets bruise badly when someone has attacked them with a needle but having this done every 4 weeks is starting to be too much. I didn't bruise from this last episode but they had such a hard time finding somewhere to go that I burst out in tears. The nurse came up and asked me if they had upset me and I told them I was not mad at them and that I was upset with the circumstances and how I feel about a port. I asked them to show me someone with a port not connected. The tubes and connections make me feel abnormal. A lady there having chemo came and showed me the port that they are encouraging me to use while having IVIG. It is completely concealed under the skin. There is no outside access at all. In fact when they hook you up, they place the needle in through the skin and into the plastic port underneath and it is like putting an IV in......when they take it out....there is a dot where the needle is taken out and it heals over like an IV dot......no one can see it at all. There is a slight bump where it is under the skin on the side of your chest. Because my arms are so sore....I may need to go with this. Because I am a nurse, I needed something that could not be open to infection with working at the hospital......being a mum and all sorts....and I wanted something that would be hidden......and this is disguised completely. I am NOT excited about the whole thing but may be it is time. If I ever stop IVIG, I can take it out again. It is inserted like a pacemaker.....they slide it in under the skin with a small, surgical incision. SO Alan and I are discussing this. It does not mean that I am gravely sick! I have a problem with people thinking that!
On the 29th October we celebrate FA Day here in Australia. This year, in the States that we have discovered FA Families, we are having a joint BBQ at a park on the 25th which is a Saturday. We have FA Caps that will be selling as our fundraiser there and it should be a lot of fun. It will give the families who met at camp, another opportunity to be with each other and have some fun! It has been great to see new friendships formed as a result of camp! I will take plenty of photos at our Adelaide, South Australian, BBQ!!!
Isaac's birthday is coming up on the 8th of November and he will be 6 years old! They grow up so fast :-)
On the 1st of November we are having his party. It is an "explorer" party. Isaac will be dressed up as a Captian....like Captian Cook discovering Australia. The kids have to come dressed as his "mighty crew" and they will go on search for land and hidden treasure. Alan is trying to "set the scene" outside...........I will have to take pictures.
On the 8th of November, Isaac's b-day, is the Christmas Pageant and Isaac wants to go to that. So we will take him to that!
On Friday this week I am doing half a day at work which should be nice. Life goes on!

Anyway, this update is almost over. I added a video below. I think it is cute. Completely off the subject. It is a video of Isaac at the dinner table and how cute he is eating his dinner. He didn't know that Alan was recording him while he ate. Excuse my lazy way of saying "vegetables". It is not how we say it here...it is me being lazy. Check out the cute video of Isaac eating and his conversation.....hehe

I am off to bed....enjoy!!!

Love Charisse