Update on all sorts! My medical and general, Isaac and Alan

Hello All,

well heaps has happened since I last wrote. A lot has happened since Isaac had his tonsils out. What should I update on first.

Myself. I have been working, pretty much, once a week in Theater Recovery at the hospital which has been really good but exhausting. 8 1/2 hour shifts are SO long and by the end of it, I feel so clummsy because my feet start to drag, lol! I have more shifts booked for the next month. Yay! I enjoye nursing.

I also decided to apply for another nursing job at a new Day Surgery Hospital opening here in the State. It will have oncology, opthamology and gastroenterology clinics and surgeries and of course, a recovery there. I applied for the gastorenterology day surgery/recovery since I have experience and background in those areas. I got a job interview and had it on Thursday at 11am. I feel that it was a good experience. I have been open with the fact that I have FA from the very beginning when I called to enquire about the job. They wanted to learn more about it in the interview and said it was ok if I wasn't open to share. I told them that, in sharing, I am trusting that they will not discriminate and they gave me their word so I shared more about it. It helps my employers to understand me more if I get a job. The questions they ask are hilarious....about the job. All these questions about what I would do in different clinical environments...etc, etc. I feel I answered them well. I have NO idea if I will get the job. I am looking for a casual position like at the hospital where I am booked monthly or weekly. I don't want to give up the hospital because I like keeping the skills up that are really challenging. I deal with C-sections and blocks and serious operations at the hospital and a day surgery, of course, would not deal with those things.

This unit that is opening up is actually where my Cancer center is moving too so that is funny. All the nurses at the cancer center, where I have my infusion, have to re-apply for the job since the Manager is new. I am a little nervous. I hope they get the job for the oncology part because they have great experience and there are a good couple of nurses who have great experience with my terrible veins. I trust them and feel safe with them. I know I will meet heaps of new nurses as well and that will be fine but after being at the cancer center for about 5 1/2 years, I feel like these nurses are family! The new oncology boss and the Director of Nursing were the two people who interviewed me and are interviewing the nurses from the cancer center as well. When I was at the center yesterday having my IVIG infusion, the nurses and I were all talking about it. Haha! That was amusing. I know that if I get the job, we have orientation days at the new work. I am wondering whether that will be all of us or the separate groups! The lady mentions that we are required to come to the both days. Hmmm....it will be funny if I get the job and the orientation days are for all of us. I would be with the nurses from the cancer center! How weird! I may not get the job though......they gave no indication of how the interview went. That is how the cancer center nurses felt as well :-)

It looks like my bone marrow biopsy will be the second week of June. I am really nervous. My platelets have been a little different and I am nervous about that. I don't really want to talk about my platelets........please pray for me as I have this procedure done and get results. Pray that my marrow has not progressed worse with the pre-leukaemia or gone to leukaemia. It is always a fear for me.

I am supposed to be shown through the transplant unit for emotional healing...remember? Well that has been delayed. I still want to go through that no matter how hard it is. I am waiting for the call.

Remember I have an area which has a lump in the girly area. Nice to chat about it, I know. Well I feel it has grown and it bothers me all the time now. It very sore. We are thinking it needs to come out completely rather than just biopsying. We biopsied it about 7 or 8 months ago. However, in the last 2 months it has become worse. It is like a cyst! We rang the gynae specialist and I see her this week. She said we can cut it out and she needs to see what needs to be done. So please pray for that.

The labs for my 4 weekly infusion last time forgot, even though it was written on the form, to do my IgG levels. We found a result from a little while ago on the computer and have gone with that. It is just below normal which is enough to stretch it to 5 weekly for now. So I had another test done yesterday since it had been the 5 weekly interval and we will have the infusion in another 5 weeks from now and check those results to see if we can go 6 weekly. The test has been done with the big lab this time and will surely NOT be missed!

IVIG went well yesterday. I slept in til 12 noon today. I felt exhausted!

Isaac is doing well. He went to school this week. Monday and Tuesday he went for half days. He was still needing guidance with lunch and pain relief. However, Wednesday he went a full day and was a bit tired that night. Thursday and Friday were much better. Big days for him but he did well, the teacher said. They are giving him rewards to eating all his sandwich. He has been given awards for eating the whole of his fruit at 9am during fruist break. I know he has managed 3/4 of his sandwich at lunch and when he manages the whole thing, he will get more rewards. These rewards are helping him feel much more positive about eating and the teacher is so nice. He has a "fill in teacher" for the first 3 weeks as their other teacher had surgery and is away. I am a little nervous. He has been responding so well to this current teacher. The other teacher experienced all those dramas with Isaac at the end of last term and it has made me nervous. She is very nice but what if Isaac acts up again once she is back? Surely we have taken care of the problem now Isaac doesn't haves sleep apnoea anymore?

Oh....Isaac hasn't been cuddling or trying to kiss this other child at school...at all! Yay! He has just not attempted! It seems he has calmed down and I hope it stays this way! I felt so distressed about it all.

Anytime this week or early next week, I will take Isaac for his repeat bloods on his clotting times and CBC and so on. He has colour back in his cheeks so I think his iron has righted itself. However, it will be interesting to find out about his clotting times and so on. I rang mum in Africa and she said my ouma had a problem with this and they had to give her Vitamin K injections before a procedure because she would haemorrage afterwards. They never were able to find out why. So that is interesting and I must tell Isaac's paed about that.

We are selling our other house that we used to live in. We cannot afford to keep it anymore. It is not working out. The market is right for buying here at the moment. I know I mentioned it earlier. Alan and Isaac are out there right now, doing things to get it ready for an open inspection. If all goes well, this house will rid us of all our debt and we will have some left over for investment....we hope. This is what we get when we crunch the numbers. We hope all will go to plan. It has been difficult to let this house go....for me. I LOVE this house and if I could move it to where we are now, I would. It is big and open and has a nice feel. The suburb is just too far away for us anymore. It also has a tree planted in my brother's honour called the "Shannon Tree" out the front. It is SO huge now. Taller than the house! I hope no one cuts it down but I know this may happen if we sell it. There are a lot of memories at this house. Every time I pull up in the driveway, I feel like I am home. I love the neighbours too.

A lot is happening. The last month, Alan and I have sensed that something wasn't quite right with his work. Things have accelerated since then from not quite right to looking for another job, to Alan now having a last day of work. He finishes up on Thursday and he hasn't got another job yet!!!! I know Alan is more calm but I feel panicked! We will be living off my disability pension and Alan's 2 day carer and any extra work I can do with nursing. What makes me feel awful is that because of FA, I can't just go and work full time in my nursing because I get exhausted and then sick! So.......once again, we just have to trust God. That is the story of our life! Haha! Man has proved that they cannot be trusted. They prove it over and over again so trusting in God is the most safest thing. He is the only one who has our BEST interest at heart. I know that Alan having a new job is in our best interest, but I didn't plan on Alan leaving his job and not having another one yet! *sigh* Yet another change.........He has been applying for HEAPS of jobs and nothing yet.

Well, I really should go in the shower. IVIG makes me SO slack. It is 1.30pm. I need to get ready and Alan is coming to pick me up since I don't drive the first 3 days after infusion. It confuses my senses.

Thanks for reading and please pray for all these things.......my bone marrow biopsy, my gynae problem/excision, Isaac's repeat bloods, the selling of our house, my job prospects and Alan getting a new job!

Love you all,
Happy Mother's Day for tomorrow!
Charisse