Family Update

Hello All,
well the 19th September has come and gone. That was my original date for my gynae surgery I shared about a little while ago. I definitely would not have been up for that after the pnuemonia so soon. The new date was set for 15th October...however, I am not sure if I will be ready for that either. I am really doing well with my recovery but my marrow is still jumping all over the place...neuts up this week and platelets dropped a bit again.

However, liver results have come down...everything is just everywhere right now. I know one thing though - I am getting stronger each day and have put some weight back on. I lost 10 kilos in total but since the eating has picked up again a couple have come back on again which is good I suppose.

I had infusion (IVIG) this past Wednesday. It went well. I usually have it on a Friday but Isaac had his tooth restoration and tongue surgery today and I needed to be with him. I am SO tired. I have not done this much stuff since I was sick in hospital!

So today Isaac had his surgery and it went well. I had a hard time getting up this morning but mum came with Isaac and I. She drove the car. Isaac did so well. He was a bit rushed and upset when we arrived but after we went into the surgical waiting area in the theatre part he was ok when the nurse offered him a helium balloon. He started talking right away then and skipping around. So he skipped right into the theatre to the doctor and hopped up on my lap understanding that he was going to be given sleepy medicine before he had his tooth fixed. Even though we had talked about it with him, I think he was surprised with the little anaesthetic mask thing they used for the gas and he let them put it on while cradling in my arms but when he was not falling asleep straight away I saw panic in his eyes and he fought and that made me feel emotional and almost cry. He still had his balloon so I was asking him to look at me and look at the balloon and finally he relaxed and he went limp and I found that really emotional. I hate the smell of anaesthetic and operatiing rooms. I am so used to it from procedures with FA and biopsies...as soon as I walked in I tried not to react to the smell. However, after Isaac was falling asleep and was on the table I looked back at him and felt so strange. I found all of that really exhausting and felt like I was going to pass out! Mum and I went for some lunch and I almost did pass out. Once I had a rest on the couch and had some food we headed back to the day surgery and they called me to say Isaac was just out and did I want to come in. I did. He was crying a little when I came in and he had a jelco in one hand and some blood on him. I felt heaps emotional. They carried him out to a lounge that I sat on. Isaac became really aggitated and cried hysterically for about 50 mins. I could not stop him. It was heart breaking. I felt like crying too. He has a phobia about bandaides and of course he had the jeloc/IV access in and he was shaking that about and kicking and all sorts. He also was bothered by the name band on his leg and got so upset. Eventually I asked that they take the IV access out even though he had not eaten or drunk yet and cut the name band off. It was about 50 mins after that he calmed down and then we snuggled but I found that 50 mins of him being really upset rather exhausting and emotional. I wanted to break down and cry. I didn't want Isaac to see me cry.

Anyway, his tooth looks lovely. They cut his mild tongue tie too. He doesn't appear to remember the upset that he had. I think he gets really aggitated like I do after an anaesthetic. I know all children do but his was SO long. It really took time for them to understand that he is honestly freaked out by things like bandaides and anything stuck to his skin.

I am exhausted tonight and glad that it is all over. Now I need to catch up on some sleep and get some rest again because I am beat!

Alan is well. The changes with FA Australia are very exciting.

Ok, I will finish for now. Thanks for checking up on us!
Love Charisse