So I haven't updated for a little while. What has been going on with us....how has life progressed?
First of all, Isaac had his bloods taken to check his clotting, CBC and red blood cell formation in his marrow. Everything came back as TOTALLY and PERFECTLY NORMAL!!!! Yay!!!! What a relief. To deal with one major health issue in the family is enough for me and I am sure for many people. To think my parents and many of you have needed to deal with FA in 2 or more of your children. I find having FA myself exhausting enough! Haha! I am SO relieved Isaac's tests came back clear. As a mother, you feel so protective of your child.
Isaac had a follow up appointment with his ENT post surgery yesterday morning and he is doing great. His airways are not obstructed anymore. He has HEAPS of air coming out his nostrils when they checked. Wonderful. He is heaps more settled at school and not tired at school anymore except for the norm. We have started to get on top of his bed wetting at night. Now that his brain can start to focus on that we may have a better time of training him. One of my dear friends has lent us a little machine that beeps when Isaac wets at night. You attach it to his undies and it has a cord that runs up the clothing with a speaker on it. When the special cord gets wet in the undies, it starts to beep and boy is it LOUD!! Haha! Isaac was dry all night until the thing went off at 0530 this morning. His undies were rather wet but only a small amount (small coin size) got on his sheet. He woke up and went to the toilet and finished his wee there. So this is the type of brain training I am talking about! We just might get somewhere now that he doesn't have sleep apnoea! Yay!
Isaac also had his flu shot today. I had to be at another appointment so Alan and Isaac went to get a shot each. I hear that Alan and Isaac talked about it heaps and Isaac was all brave until it was his turn. Alan told me he ran under the table and just started screaming! He then started screaming and crying hysterically and Alan couldn't reason with him so he had to pick him up, hold him on his lap and the doctor very quickly did the needle. I feel bad for Isaac. I used to hate having that happen to me. However, if you can't reason with the kid, what do you do? We prepare him and he openly talks about having it and being brave and what he allows. He wanted this doctor so I allowed him to have this doctor so he felt control.....but still it went bad. Shame. If I was there, I am sure I would have cried!
Yesterday I had an MRI under sedation. Routine for making sure there is no spread from the eccrine cancer I had in my head because it can spread. The MRI is also useful for checking the sinus area for cancer and other areas because FA is high risk for head and neck cancer. This scan looks at areas that the scope of an ENT cannot get to. It went well. I dozed with the IV sedation for about 2 thirds of the procedure and then, bing, I was wide awake! The beds that you lie on are quite hard and I get very sore. Where my bone marrow biopsy sites are....I get so sore I can't lay still. When I woke I was really sore and the microphone wasn't working when I tried to tell them so. I asked for them to get me out! They just said, we have to repeat that part of the scan because you are moving...from their mic. So I needed to show them that I had to talk to them and moved again. I had to move my legs! The pain was getting unbearable. Then they opened me up and said they were putting dye in my IV and the anaesthetist said he would give me more IV sedation. I was glad for that and made it through the rest of the scan. It is just over an hour long! I can ring for the results already but have decided to wait until I see the doctor in 2 weeks. I am not desperate for them. I get nervous waiting but I have so much on my plate right now. I need to focus on having all these procedures without getting emotional over results. Sometimes that is how I need to focus.
I had a dermatology appointment today. He looked at my scar on my head and thinks that the issue of the sore scar is to do with a stitch being stuck under there. For now, we will leave it. He doesn't think it is the cancer coming back. I have another small dermatitis lesion on the other side of my scalp I was worried about. He said it doesn't look nasty but he wants to biopsy it because we have learnt from the other one. We want to rule out no nasty cancers. This lesion thingy seems to be around the hair follicle. Although, it looks like some inflammation or dermatitis, we are going to rule it out. For one month, I will treat it with cream and then if it is not responding to that we will biopsy it and just check. So that is good. I am not freaking about that right now. I am comfortable with our plan.
So on the 11th June I have this lump cut out in the girly area.....ouch! Hopefully it is just an inflammatory granuloma and nothing nasty. Whatever it is, it is getting bigger and more sore and bleeding on and off! I want it out! I don't trust FA with anything strange!
I am still waiting to hear back from my haematologist to organise my date for the bone marrow biopsy! It used to be SO easy to do all this. Since I changed doctors 3 or 4 years ago to the adult one, it feels like I am forever chasing him down! It is frustrating! I need IVIG infusion, the surgery and the biopsy to be in that week because I have 2 weeks off and then I am back at work!
I finally got a letter from the pyschologist I am supposed to see for being taken through the transplant unit for emotional healing. I will see her on the 5th June. This next Friday. It is just to sit and chat with her at first, I believe. So that is now getting done.
Alan still has not got a new job. For anyone who missed all that, Alan was made redundant at work. He has now been at home for 2 weeks and has 2 promising job interviews coming up. Both will probably be next week. Please pray he will get it. We have been REALLY tight. In fact, some thing we just cannot afford and have needed to go to the bank to talk about things to help us right now. Not borrowing money but how to manage everything since the job change. Our house has not sold yet.....and we hope it will soon!
I have been working practically once a week. I just don't seem to manage more than that. I am exhausted! I will work overtime on that shift, but I don't like to do more than one a week. I certainly can't do two in a row. However, this money has been a life savour! I don't always work once a week. I am making sure I have these shifts at the moment. When I feel exhausted or tired, I still try and do the shift. I am feeling a little worn out but have enjoyed nursing more frequently and in the same area, theater recovery. I have 2 weeks off for procedures and surgeries and then I am booked back on again.
Mum and dad will be back from Africa on the 5th June. I am looking forward to seeing them.
Thank you to friends and family who have been a help and are a help while we get through this challenging time with finance and lack of job. We greatly appreciate all the support.
This next week we also have the Australian/New Zealand Haematology/Oncology conference here in Adelaide this year! Guess what???? Fanconi Anaemia Australia managed to get a grant to attend the conference and have a booth! YES!!!! FARF have sent over the FA Handbooks to give out to every medical person attending the conference. Our grant covered getting leaflets and posters and information together on FA to give to the doctors, nurses and social workers. OH and guess what else???? Blanche Alter is one of the key international speakers at this conference! Yes, that's right and we are VERY excited to be involved as Fanconi Anaemia Australia! Alan and I will be attending. Alan more than me......it goes for 3 whole days :-) On Thursday night we have the welcome, meet and greet from 6pm to 7.30pm. Alan and I will be in uniform and wandering around the doctors, introducing ourselves, making FA Australia more known to them and the disease. This is our intention. The conference will start that morning and run through to Saturday. This is a huge break for us here. We feel like we will have the chance to make a difference! A chance to help with education and awareness in regards to FA and also to the FA Australia group. They will know that we are here! All the FA handbooks arrives in the post the other week. All together it was 90kgs of books! Haha! It feels good to be doing this!!! Please pray it goes well!
So that is my exciting news.
Well, talk to you all soon!
Love Charisse
Friday, May 29, 2009
Sunday, May 17, 2009
My Birthday Today!
Hi All,
I turn 31 years old today. Pretty good for an FA person who has had 13 years of pre-leukaemia :-) While my birthday is definitely a time of celebration, it also is a time of sadness. Sometimes I tend to think about a lot when my birthday comes around.
However, I am actually really excited that it is my birthday and don't mind celebrating my birthday. To overcome all the bad things that FA has done in my life, I love to celebrate and be with people during my birthday because it helps me see how blessed I am to have gotten to this age and live the way I have and more.
Thank you to all who have wished me happy birthday and any presents you have given. So far, I love them all!!! Hehe
I have had a bit of a struggle this weekend. I saw a doctor on Friday and was given some news that upset my apple cart and caused my emotional rollercoaster to do more loops and all sorts. I cried a lot of that night and didn't fall asleep til around 3am. I am not going to share. Some things are too close to my heart. Sat I slept in til 1230pm because of my late settle the night before. I was so down and the tears were coming at intervals throughout Saturday that Alan decided we would go to the Beach House down by Glenelg beach with Isaac, Alan and myself. So we took a small amount of cash and went down there. Went on the VERY slow ferris wheel.....lol.....on a train, playground (Isaac did), ate some cheap dinner and went for a walk on the jetty and yes, it did cheer me up a bit. Alan said it was my birthday celebration. It was nice. On the way home we pulled up next to some fire works. They were in the city and right on the side of the road. We saw everything. It was a lovely finish to the evening.
Today I woke up and opened my presents from Alan and Isaac. I got a "Grey's Anatomy computer game"...hehe....and pink beanie, gloves, scarf and umbrella from Isaac. He knows me all too well :-) Then we went to church and there was a really good speaker at church. We came home and had a birthday lunch with my sister and her family. We had a cake that Alan and Isaac made. Sang happy birthday and blew out the candles. My mother in law, Denise, came and gave me a present as well....thank you. It was nice to see them all. My sister in law is taking me out for a hot chocolate tonight. I got plenty of messages and phone calls from my mum and dad in Africa! I love you!
Now, I do have photos but I am too tired to put then up right now.
Thanks for making my birthday special everyone. Oh, and on Friday night our friends Stephen and Leah came over for a pork roast and we played the CSI Miami Board game which was fun. That was a critical night since I had come home with particularly upsetting news from the doctor.
Thank you for celebrating my birthday everyone. Thank you for the messages on Facebook and email. The phone calls and the spending time together in person.
Wow, I am tired.
Now I saw my gynae doctor and my surgery to take this lump out from the lady area is booked for the 11th June. She doesn't think it is cancer but it will be checked anyway with pathology as per usual. She thinks it is some inflammatory granulotoma or something. I don't think that is the right word but I wasn't taking too much notice.....just asking if it was suspected cancer or not....hehe...so the second word I didn't really catch.
Pray for Isaac as we take him for his bloods tomorrow! That all goes well :-)
Ok, I am gonna go!
Love you and thanks,
Charisse
I turn 31 years old today. Pretty good for an FA person who has had 13 years of pre-leukaemia :-) While my birthday is definitely a time of celebration, it also is a time of sadness. Sometimes I tend to think about a lot when my birthday comes around.
However, I am actually really excited that it is my birthday and don't mind celebrating my birthday. To overcome all the bad things that FA has done in my life, I love to celebrate and be with people during my birthday because it helps me see how blessed I am to have gotten to this age and live the way I have and more.
Thank you to all who have wished me happy birthday and any presents you have given. So far, I love them all!!! Hehe
I have had a bit of a struggle this weekend. I saw a doctor on Friday and was given some news that upset my apple cart and caused my emotional rollercoaster to do more loops and all sorts. I cried a lot of that night and didn't fall asleep til around 3am. I am not going to share. Some things are too close to my heart. Sat I slept in til 1230pm because of my late settle the night before. I was so down and the tears were coming at intervals throughout Saturday that Alan decided we would go to the Beach House down by Glenelg beach with Isaac, Alan and myself. So we took a small amount of cash and went down there. Went on the VERY slow ferris wheel.....lol.....on a train, playground (Isaac did), ate some cheap dinner and went for a walk on the jetty and yes, it did cheer me up a bit. Alan said it was my birthday celebration. It was nice. On the way home we pulled up next to some fire works. They were in the city and right on the side of the road. We saw everything. It was a lovely finish to the evening.
Today I woke up and opened my presents from Alan and Isaac. I got a "Grey's Anatomy computer game"...hehe....and pink beanie, gloves, scarf and umbrella from Isaac. He knows me all too well :-) Then we went to church and there was a really good speaker at church. We came home and had a birthday lunch with my sister and her family. We had a cake that Alan and Isaac made. Sang happy birthday and blew out the candles. My mother in law, Denise, came and gave me a present as well....thank you. It was nice to see them all. My sister in law is taking me out for a hot chocolate tonight. I got plenty of messages and phone calls from my mum and dad in Africa! I love you!
Now, I do have photos but I am too tired to put then up right now.
Thanks for making my birthday special everyone. Oh, and on Friday night our friends Stephen and Leah came over for a pork roast and we played the CSI Miami Board game which was fun. That was a critical night since I had come home with particularly upsetting news from the doctor.
Thank you for celebrating my birthday everyone. Thank you for the messages on Facebook and email. The phone calls and the spending time together in person.
Wow, I am tired.
Now I saw my gynae doctor and my surgery to take this lump out from the lady area is booked for the 11th June. She doesn't think it is cancer but it will be checked anyway with pathology as per usual. She thinks it is some inflammatory granulotoma or something. I don't think that is the right word but I wasn't taking too much notice.....just asking if it was suspected cancer or not....hehe...so the second word I didn't really catch.
Pray for Isaac as we take him for his bloods tomorrow! That all goes well :-)
Ok, I am gonna go!
Love you and thanks,
Charisse
Friday, May 8, 2009
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
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
Friday, May 1, 2009
Good Day with Isaac
Hi All....again....hehe,
Isaac had a good day today. He asked for a snack at morning tea time and so I offered him some things and he chose to have some jatz (cracker biscuits). I thought, "this will be interesting" but still gave them to him. He had two at first. I was doing something and he said he was finished. I was SO surprised! No crying, or gagging as he ate these so we got him another 2 with vegemite on them and he ate them too, clearing his throat a little! I was so excited. He then asked for a piece of bread with butter. So we gave him it and I waited with baited breath for the tears and gagging and spitting. A little clearing of the throat but nothing else happened! Yay! He had eaten without a fuss! I had high hopes for lunch time being a success as well :-)
Lunch time approached and he wanted orange soupe (pumpkin) with teddy noodles. So I heated the soup through since we had it yesterday and cooked the teddy noodles and mixed it all together. He ate quite a bit and then said he was full. That usually means he is getting tired feeding himself and because I want him to have a good lunch I offered to help. He ate almost the whole soup and the noodles. He spat up one noodle and gagged a little. But there were no tears...YAY!!!!!!
He had a biscuit for afternoon tea and didn't have many issues...still no tears.
We went to visit Aunty Angela this afternoon and that was fun. Then we went to the hairdresser for Isaac to have a hair cut. It was well overdue! Isaac never likes having his hair cut and always complains prior to the appointment. He used to scream during his hair cut but since starting school last year, he gets a bit pouty (a word???) and sulks a bit but is always very good. Today I was expecting the same. Well he sat there getting his hair cut and he started screaming! I was so surprised! As the scissors came closer he did this high pitched scream/squeal and burst into fresh tears....crying and crying and then screaming again. I apologised to the hair dresser explaining that he had a traumatic week last week and he must be just traumatised. I then tried to coax Isaac through the haircut which was hard with him crying and screaming at intervals! I was telling him that the hairdresser is not hurting him, just cutting his hair like we always do! But when he saw the scissors out the corner of his eye, he would panic and scream and then cry!
I must say that Isaac must be a bit traumatised from what happened last week post tonsillectomy and his recovery! He must be very sensitive right now which is why he has been struggling to recover from it all. It makes me nervous that in a week I have to take him for another blood test. Just seeing the room and knowing what is going to happen freaks him out before they do anything! I know Isaac is a real sensitive kid but what I witnessed today made me feel sad that he was so traumatised last week. I know that when I was a child...and of course I have FA....I had so much stuff happen and felt out of control and traumatised a lot of the time! Poor Isaac.
After the hair cut the man gave him a nice biscuit for doing a "good job", although I don't think Isaac was "well behaved" compared to how he usually is....but he wasn't deliberately being naughty today......I could see the fear in his eyes....shame my poor baby! I told the man he was so nice giving Isaac a biscuit when Isaac screamed and didn't sit still and stuff. The man was not phased by Isaac's outburst which was good. He is a great hair dresser and is one of the people who does Isaac specifically. He reassured me that Isaac was acting out of fear and trauma of what he had been through last week.
Then Isaac and I headed home. On the way home he asked for some MacDonalds and I thought, "wow, he is feeling better!". Alan and I got him MacDonalds for dinner and Isaac ate 4 of the 6 chicken nuggets and a bit of the chips, the chocolate milkshake and we cooked him up some brocholi which he ate the lot of :-) No tears but there was HEAPS of GROSS gagging!!! Hahahahahahahaha! He told us that God had told him to eat all his tea and not worry about his throat hurting.....so he did. Impressive hey????
Isaac also had only 3 doses of panadol for pain relief today instead of 4 doses! He is now off the tramadol (strong pain relief).
He is still waking distressed at night where he isn't awake and you have to wake him to calm him down. Shame. He still is very pale. However, he may be able to go to school on Monday. We will trial him and if he doesn't cope, he can stay home the next day.
In one week, as I said, we need to have those bloods taken for him to check his CBC (Complete blood count, platelets, haemaglobin), his INR and prothrombin times (clotting times) and whether his marrow is producing the baby red blood cells properly (reticulytes,....test has a longer name). Because he is pale and had the bleed they want to check that these are all ok. Also, he had the abnormal clotting...it was too slow so they want to see if it is like that when he is well and eating more normally. What a joy. I pray that it all goes well.
As for me, stay in tune for my bone marrow biopsy date, my follow up MRI for my head and neck and sinuses and ENT follow up, gynae follow up and may be biopsy of down there again.....and my liver/breast ultrasounds that I am due. I had the dentist about 2 weeks ago. I also have a dermatology appointment to check the normal and see what my head scar is doing.
Thanks for checking in everyone!
Thanks for the support!
Love Charisse
Isaac had a good day today. He asked for a snack at morning tea time and so I offered him some things and he chose to have some jatz (cracker biscuits). I thought, "this will be interesting" but still gave them to him. He had two at first. I was doing something and he said he was finished. I was SO surprised! No crying, or gagging as he ate these so we got him another 2 with vegemite on them and he ate them too, clearing his throat a little! I was so excited. He then asked for a piece of bread with butter. So we gave him it and I waited with baited breath for the tears and gagging and spitting. A little clearing of the throat but nothing else happened! Yay! He had eaten without a fuss! I had high hopes for lunch time being a success as well :-)
Lunch time approached and he wanted orange soupe (pumpkin) with teddy noodles. So I heated the soup through since we had it yesterday and cooked the teddy noodles and mixed it all together. He ate quite a bit and then said he was full. That usually means he is getting tired feeding himself and because I want him to have a good lunch I offered to help. He ate almost the whole soup and the noodles. He spat up one noodle and gagged a little. But there were no tears...YAY!!!!!!
He had a biscuit for afternoon tea and didn't have many issues...still no tears.
We went to visit Aunty Angela this afternoon and that was fun. Then we went to the hairdresser for Isaac to have a hair cut. It was well overdue! Isaac never likes having his hair cut and always complains prior to the appointment. He used to scream during his hair cut but since starting school last year, he gets a bit pouty (a word???) and sulks a bit but is always very good. Today I was expecting the same. Well he sat there getting his hair cut and he started screaming! I was so surprised! As the scissors came closer he did this high pitched scream/squeal and burst into fresh tears....crying and crying and then screaming again. I apologised to the hair dresser explaining that he had a traumatic week last week and he must be just traumatised. I then tried to coax Isaac through the haircut which was hard with him crying and screaming at intervals! I was telling him that the hairdresser is not hurting him, just cutting his hair like we always do! But when he saw the scissors out the corner of his eye, he would panic and scream and then cry!
I must say that Isaac must be a bit traumatised from what happened last week post tonsillectomy and his recovery! He must be very sensitive right now which is why he has been struggling to recover from it all. It makes me nervous that in a week I have to take him for another blood test. Just seeing the room and knowing what is going to happen freaks him out before they do anything! I know Isaac is a real sensitive kid but what I witnessed today made me feel sad that he was so traumatised last week. I know that when I was a child...and of course I have FA....I had so much stuff happen and felt out of control and traumatised a lot of the time! Poor Isaac.
After the hair cut the man gave him a nice biscuit for doing a "good job", although I don't think Isaac was "well behaved" compared to how he usually is....but he wasn't deliberately being naughty today......I could see the fear in his eyes....shame my poor baby! I told the man he was so nice giving Isaac a biscuit when Isaac screamed and didn't sit still and stuff. The man was not phased by Isaac's outburst which was good. He is a great hair dresser and is one of the people who does Isaac specifically. He reassured me that Isaac was acting out of fear and trauma of what he had been through last week.
Then Isaac and I headed home. On the way home he asked for some MacDonalds and I thought, "wow, he is feeling better!". Alan and I got him MacDonalds for dinner and Isaac ate 4 of the 6 chicken nuggets and a bit of the chips, the chocolate milkshake and we cooked him up some brocholi which he ate the lot of :-) No tears but there was HEAPS of GROSS gagging!!! Hahahahahahahaha! He told us that God had told him to eat all his tea and not worry about his throat hurting.....so he did. Impressive hey????
Isaac also had only 3 doses of panadol for pain relief today instead of 4 doses! He is now off the tramadol (strong pain relief).
He is still waking distressed at night where he isn't awake and you have to wake him to calm him down. Shame. He still is very pale. However, he may be able to go to school on Monday. We will trial him and if he doesn't cope, he can stay home the next day.
In one week, as I said, we need to have those bloods taken for him to check his CBC (Complete blood count, platelets, haemaglobin), his INR and prothrombin times (clotting times) and whether his marrow is producing the baby red blood cells properly (reticulytes,....test has a longer name). Because he is pale and had the bleed they want to check that these are all ok. Also, he had the abnormal clotting...it was too slow so they want to see if it is like that when he is well and eating more normally. What a joy. I pray that it all goes well.
As for me, stay in tune for my bone marrow biopsy date, my follow up MRI for my head and neck and sinuses and ENT follow up, gynae follow up and may be biopsy of down there again.....and my liver/breast ultrasounds that I am due. I had the dentist about 2 weeks ago. I also have a dermatology appointment to check the normal and see what my head scar is doing.
Thanks for checking in everyone!
Thanks for the support!
Love Charisse
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