Hello All,
Well, it was a good weekend! We got to the wedding and saw both my friends. It was very nice. Now my other friend has gone back to NSW....I will miss her until I see her again.
My sister's baby's dedication was good on Sunday. She is So funny...my niece that is. she always laughs or smiles at me and during the dedication I was trying to take her picture and she screws up her nose and does funny faces at me.....she is very cute.
They came to visit with mum and I yesterday and she had cut her first tooth! And she rolled properly twice! She had been sitting up but had not rolled a lot...and now she is doing it...obviously got the knack now....such a sweet girl..and with her first tooth...hehe
We had tea with Alan's brother and partner tonight! I had such a great time with them both....it just occurred to me that I don't say names in my blog...hehe...I think it is because I am not sure if people want me to mention their names..I should ask them. Anyway, I had a really good time. Thanks Guys...if you are reading this...I really enjoyed my time with you tonight. It was special.
Well, this week I have been having trouble sleeping! It has been SO annoying. On Sat night I didn't fall asleep until 2.30am and Sunday it was 1.30am and last night was 2.30am...I am feeling really tired. I think it could be hormonal. There was only one night that I was feeling anxious about something....otherwise I have been pretty comfortable with going to bed...and I go to bed when tired....and yet I have not been falling asleep. I still have a cold so when I don't sleep as well...that seems to flare up. I sure hope I sleep well tonight...I feel very tired....and I have done well with emotions while being tired but I feel like I can't hold in emotions much longer when feeling so tired....I get teary.
Tomorrow we are going to see a friend from kindy. Isaac will have a play and I will visit with the child's mum. My friend/nanny comes on a Thursday too...so I will be graced with her presence.
Friday, as I said in my last post...is my infusion. Pray I don't have a severe reaction....because I am not excited about a reaction...they are not nice.
Work has rung me three times in the last week asking me to work...obviously people on sick leave more now that it is winter. I have not been well enough this month to work...but I can't wait til next month...when I can do a shift or two!
Well, that is it from me. I will talk to you all later.
Love Ya,
Charisse
Wednesday, June 27, 2007
Friday, June 22, 2007
Learning to knit/The Little Things/update/being amused
Hello All!
Well I already wrote into the Fanconi Anaemia group to tell them about my great knitting skills! Hehe. I have started to knit. Have I written about this here yet? Even if I have, I am gonna write it again..I can be so vague. Isaac's nanna and great grandma have started to knit a rug for Isaac. So it doesn't take forever, I have started helping as well...not that the process will be sped up with my great, fast (not) knitting. Hehe. Alan's sister is doing some knitting too (I have heard that you, Jacqui, have done quite a number of sqaures!)...so we are all helping. The day that Nanna showed me how to knit was amusing. Well I find it amusing. I had my eyes glued onto the knitting needles and the stitch because I was SO tense about what I was doing! Ha! That night I piled heaps of cushions under my elbows to support them because I was so sore from knitting. I was then knitting with my elbows in the air...haha...hehe...I am giggling because I find it so funny.
Anyway, I have now done 22 rows of my knitted square...hehe...and do not have to pile all the pillows so high! I am a slow knitter but may be I will get faster with practise...you would hope! Ha! It has been fun though. My own nanny taught me to knit when I was very young and I used to knit scarves..but have not done any of that in years so it was like learning all over again.
Anyway, to another subject. Last Sunday my best friend from highschool was down from Sydney...well a suburb around there...NSW....I miss her so much here in Adelaide and I was so excited that she was having her baby shower here in Adelaide. She is about 31 weeks pregnant...Is that right...well around that last week. I loved seeing her. It was so nice to just be in the room with her. We did a guessing game. You know, how many jelly beans are in the bottle and I guessed right. I kind of used a system I thought may work. Haha...I was SO excited ...yes, I know...to be excited over a jelly bean game is rather amusing...but I squealed with delight...haha..I got to take the jelly beans home and a new baby bottle...not that Isaac is drinking from a bottle anymore...far from it.
Tomorrow one of my friends from highschool is getting married. My best friend from highschool will be her bridesmaide. Then she will be going back to Sydney. I want to go and see my friend get married and I can see my other friend again while i am there!
Sunday, my sister's baby is being dedicated to God at church. There will be a luncheon after church. What a relief that i am more well now than last week!
Isaac is pretty much recovered and will be at kindy next week. I just have an annoying cough left and my nose clogs up and runs at night...but I feel a lot better. Alan is still roughing it out a bit. He doesn't feel nice at night but he has been at work.
We are probably having dinner with Alan's brother and partner this week and that should be nice. I am looking forward to that.
So the weekend and next week should be fun!
Then the IVIG infusion is on Friday and I pray I don't have a horrible reaction like last time. This month has been constant unwellness...first the 1 1/2 weeks of infusion reaction and then Isaac getting sick, myself and Alan...and I didn't get to go to work this month because I have been too unwell with reactions and viruses. That is frustrating. I do miss it. I find work very fulfilling (I am a nurse). Hopefully next month I will get to work. I did receive all my updated pay slips in the mail...and recieved that I have to go and do my yearly update with drug calculations, CPR and manual handling...it is good that I get paid to go in and do all that stuff.
Ha! I want to share something I find funny...again. Isaac goes through stages when he will go to sleep without you sitting in the room for a while...does that make sense....he will fall asleep and then there are times when I need to spend 10 min sitting in the rocking chair while he lies in bed...it helps him know that I am all right...I have no idea if this is making sense. Anyway, tonight I am sitting in the chair and Isaac is lying in the bed but every time he sits up to look where I am I can see the sillouette (sp?) of his head against the light in the hall way. Now it is SO cute that I just burst out laughing. I don't know if you find this funny but a child sitting there, bolt upright, looks really funny to me in the dark. I just was giggling and giggling..."oh this won't help Isaac to fall asleep"..and called Alan to come and sit there for a little while...anyway, I just found that funny! Ha!
Ok, I suppose I should go now. May be I will do some knitting. Actually I think Alan and I will watch a movie together..nothing like good old quality time together vegging when we fell ill!
Love you All,
Charisse
Well I already wrote into the Fanconi Anaemia group to tell them about my great knitting skills! Hehe. I have started to knit. Have I written about this here yet? Even if I have, I am gonna write it again..I can be so vague. Isaac's nanna and great grandma have started to knit a rug for Isaac. So it doesn't take forever, I have started helping as well...not that the process will be sped up with my great, fast (not) knitting. Hehe. Alan's sister is doing some knitting too (I have heard that you, Jacqui, have done quite a number of sqaures!)...so we are all helping. The day that Nanna showed me how to knit was amusing. Well I find it amusing. I had my eyes glued onto the knitting needles and the stitch because I was SO tense about what I was doing! Ha! That night I piled heaps of cushions under my elbows to support them because I was so sore from knitting. I was then knitting with my elbows in the air...haha...hehe...I am giggling because I find it so funny.
Anyway, I have now done 22 rows of my knitted square...hehe...and do not have to pile all the pillows so high! I am a slow knitter but may be I will get faster with practise...you would hope! Ha! It has been fun though. My own nanny taught me to knit when I was very young and I used to knit scarves..but have not done any of that in years so it was like learning all over again.
Anyway, to another subject. Last Sunday my best friend from highschool was down from Sydney...well a suburb around there...NSW....I miss her so much here in Adelaide and I was so excited that she was having her baby shower here in Adelaide. She is about 31 weeks pregnant...Is that right...well around that last week. I loved seeing her. It was so nice to just be in the room with her. We did a guessing game. You know, how many jelly beans are in the bottle and I guessed right. I kind of used a system I thought may work. Haha...I was SO excited ...yes, I know...to be excited over a jelly bean game is rather amusing...but I squealed with delight...haha..I got to take the jelly beans home and a new baby bottle...not that Isaac is drinking from a bottle anymore...far from it.
Tomorrow one of my friends from highschool is getting married. My best friend from highschool will be her bridesmaide. Then she will be going back to Sydney. I want to go and see my friend get married and I can see my other friend again while i am there!
Sunday, my sister's baby is being dedicated to God at church. There will be a luncheon after church. What a relief that i am more well now than last week!
Isaac is pretty much recovered and will be at kindy next week. I just have an annoying cough left and my nose clogs up and runs at night...but I feel a lot better. Alan is still roughing it out a bit. He doesn't feel nice at night but he has been at work.
We are probably having dinner with Alan's brother and partner this week and that should be nice. I am looking forward to that.
So the weekend and next week should be fun!
Then the IVIG infusion is on Friday and I pray I don't have a horrible reaction like last time. This month has been constant unwellness...first the 1 1/2 weeks of infusion reaction and then Isaac getting sick, myself and Alan...and I didn't get to go to work this month because I have been too unwell with reactions and viruses. That is frustrating. I do miss it. I find work very fulfilling (I am a nurse). Hopefully next month I will get to work. I did receive all my updated pay slips in the mail...and recieved that I have to go and do my yearly update with drug calculations, CPR and manual handling...it is good that I get paid to go in and do all that stuff.
Ha! I want to share something I find funny...again. Isaac goes through stages when he will go to sleep without you sitting in the room for a while...does that make sense....he will fall asleep and then there are times when I need to spend 10 min sitting in the rocking chair while he lies in bed...it helps him know that I am all right...I have no idea if this is making sense. Anyway, tonight I am sitting in the chair and Isaac is lying in the bed but every time he sits up to look where I am I can see the sillouette (sp?) of his head against the light in the hall way. Now it is SO cute that I just burst out laughing. I don't know if you find this funny but a child sitting there, bolt upright, looks really funny to me in the dark. I just was giggling and giggling..."oh this won't help Isaac to fall asleep"..and called Alan to come and sit there for a little while...anyway, I just found that funny! Ha!
Ok, I suppose I should go now. May be I will do some knitting. Actually I think Alan and I will watch a movie together..nothing like good old quality time together vegging when we fell ill!
Love you All,
Charisse
Saturday, June 16, 2007
A hard Day
Don't you really dislike it when you do something and then feel guilty for a long time afterwards? I mean when you accidently get cross with your child and it wasn't their fault and you feel really bad?
I have been having a frustrating time with Isaac's poo toilet training. Remember how I said that the paediatrician mentioned that it was a problem with his brain and the receptors on the bowel..and that it doesn't tell him that he needs to go to the toilet until his bowel is so stretched so the poo-poo is SO big. It then hurts and Isaac becomes really anxious about doing it on the toilet. Not only that, when he relaxes to go to sleep it will come rushing out...usually he has a nappy on for sleep time...but I put a mattress protector on his bed and have tried without the nappy for afternoon sleep time, hoping it would encourage him to go on the toilet. I keep forgetting that it is not his fault that he feels anxious....and I afraid to admit that today I got really frustrated and got cross. I have not been able to shake the feeling of guilt over being cross at him when it came to poo-poo on toilet. I apologised...said I was sorry to him..told him I loved him and gave him a big cuddle and told him that I know it is not his fault and mummy is really sorry that I got a bit upset about it all....let me backtrack a bit. The medication that he is on to help soften the poo and stuff is an oil and if they are on a too big a dose it will leak out their bottom...he has been soiling lots of clothing because of this and I have tried to keep my calm...because I know it is not his fault. Today he was sitting on my lap and had some wind and soiled a lot and so I encouraged him to sit on the toilet and we both became distressed...he sat there but got all upset and I knew he had poo-poo to come out because he had been holding it and some came out on his pants..I just wanted him to sit a little longer but he was being "difficult" and I became upset and frustrated....and he cried...and I feel SO bad about it. No matter how many times I say sorry I feel SO bad that I let myself get frustrated and showed it when it is not his fault. So the medication needs to be decreased by 5 mls to help stop the leakage and then we won't have the soiling problem...Isaac never soils even though he doesn't do poo-poo on toilet...he never soils anything but will do the poo-poo in the nappy while sleeping. I need to stop this leakage because it is causing Isaac distress, mummy distress and daddy at times too...we feel distressed....so if we can sort this dosage out and try to remember, "it is not Isaac's fault"...we can get through this....I will ring the paediatrician to keep him up to date I think so I have support in trying to work through this issue. He is toilet trained with wee-wee....but I keep thinking that I have a deadline to get this fixed up and that is probably putting pressure on me and making me feel a bit distressed. I need to still do this at my own pace and most importantly..at Isaac's pace and keep in touch with the paediatrician so I don't feel alone and so I don't panic that there is anything else that I need to do to help Isaac. May be, then, I won't feel so frustrated..so distressed because this really distresses me...and if I am distressed..surely Isaac is distressed..and Alan.
Now down to health issues. Isaac is feeling much better...still runny nose and cough but his energy levels have increased today and he is eating better...on the mend. I definitely had what Isaac had and are are getting better but I still have hardly any energy and went i went to the shops today, only after a couple of mins of being in the shop I felt clammy and like I was going to faint. Alan...well he is now sick. He was feeling a bit off yesterday but ok. He has had some ulcers and a sore throat a bit and I thought he may be fighting it but today he is feeling less energy and has lost a bit of his voice and is coughing a bit...he said he is feeling weird and he has been lying on the couch! A definite sign of unwellness. I don't think either of us will be at church tomorrow. It is not a nice virus either. Isaac had the day of temperatures in the high 38 degrees C...and it landed me in bed and so Alan is at the beginning of it.
I also was a bit anxious the last day and had some nightmares last night...woke up with a bad headache this morning...I have not been feeling the most emotionally stable today. I was supposed to have a haematologist appointment yesterday but was too unwell to make it. Alan went in my place to discuss a few things and one of the few things really upset me...what the haematologist said....you know, we all know about the negative things about FA but it is really hard when a doctor or doctors keep driving this information down...I know about how bad FA can be but I am trying to keep on living and live hope in my life by making certain decisions to do some special things with my life and it feels really discouraging when they keep going home of this risk thing.....if all I did was live according to all the risks with FA i would not have become a registered nurse...a mother...a wife...travelled and all sorts of things....I feel very restricted by the medical world. My old haematologist...the one I really liked..used to tell me that he knew I understood all the risks so he was not going to keep mentioning them because I am an adult and we had discussed them and he knew that I was in my right mind and that I should be able to have hope and live life because I know what the risks are and I am making fully informed decisions....so I felt like I had hope to do things to just live but I have struggled with my right to do that since he left...it has been so discouraging. Well, I had tears over some things that were said and Alan and I discussed them and we know how we feel about these things and are standing firm because we know what we want to do as a couple, as parents...as individuals who face this disease..we know what we think is best for our family......I am not actually gonna talk about our secret discussions as husband and wife......they are for us right now...
Anyway, so I don't have any any funny things to discuss today...sorry...all deep stuff.
I sure hope I didn't do any damage or cause more anxiety for Isaac with my accidently upset...I don't want him to think I am cross...he seems fine now but I worry! It is so hard to do everything right as a parent, an individual and a wife sometimes...that is life though...God is helping me. I have to remember that...He really is.
Ok, well til later,
Love Charisse
I have been having a frustrating time with Isaac's poo toilet training. Remember how I said that the paediatrician mentioned that it was a problem with his brain and the receptors on the bowel..and that it doesn't tell him that he needs to go to the toilet until his bowel is so stretched so the poo-poo is SO big. It then hurts and Isaac becomes really anxious about doing it on the toilet. Not only that, when he relaxes to go to sleep it will come rushing out...usually he has a nappy on for sleep time...but I put a mattress protector on his bed and have tried without the nappy for afternoon sleep time, hoping it would encourage him to go on the toilet. I keep forgetting that it is not his fault that he feels anxious....and I afraid to admit that today I got really frustrated and got cross. I have not been able to shake the feeling of guilt over being cross at him when it came to poo-poo on toilet. I apologised...said I was sorry to him..told him I loved him and gave him a big cuddle and told him that I know it is not his fault and mummy is really sorry that I got a bit upset about it all....let me backtrack a bit. The medication that he is on to help soften the poo and stuff is an oil and if they are on a too big a dose it will leak out their bottom...he has been soiling lots of clothing because of this and I have tried to keep my calm...because I know it is not his fault. Today he was sitting on my lap and had some wind and soiled a lot and so I encouraged him to sit on the toilet and we both became distressed...he sat there but got all upset and I knew he had poo-poo to come out because he had been holding it and some came out on his pants..I just wanted him to sit a little longer but he was being "difficult" and I became upset and frustrated....and he cried...and I feel SO bad about it. No matter how many times I say sorry I feel SO bad that I let myself get frustrated and showed it when it is not his fault. So the medication needs to be decreased by 5 mls to help stop the leakage and then we won't have the soiling problem...Isaac never soils even though he doesn't do poo-poo on toilet...he never soils anything but will do the poo-poo in the nappy while sleeping. I need to stop this leakage because it is causing Isaac distress, mummy distress and daddy at times too...we feel distressed....so if we can sort this dosage out and try to remember, "it is not Isaac's fault"...we can get through this....I will ring the paediatrician to keep him up to date I think so I have support in trying to work through this issue. He is toilet trained with wee-wee....but I keep thinking that I have a deadline to get this fixed up and that is probably putting pressure on me and making me feel a bit distressed. I need to still do this at my own pace and most importantly..at Isaac's pace and keep in touch with the paediatrician so I don't feel alone and so I don't panic that there is anything else that I need to do to help Isaac. May be, then, I won't feel so frustrated..so distressed because this really distresses me...and if I am distressed..surely Isaac is distressed..and Alan.
Now down to health issues. Isaac is feeling much better...still runny nose and cough but his energy levels have increased today and he is eating better...on the mend. I definitely had what Isaac had and are are getting better but I still have hardly any energy and went i went to the shops today, only after a couple of mins of being in the shop I felt clammy and like I was going to faint. Alan...well he is now sick. He was feeling a bit off yesterday but ok. He has had some ulcers and a sore throat a bit and I thought he may be fighting it but today he is feeling less energy and has lost a bit of his voice and is coughing a bit...he said he is feeling weird and he has been lying on the couch! A definite sign of unwellness. I don't think either of us will be at church tomorrow. It is not a nice virus either. Isaac had the day of temperatures in the high 38 degrees C...and it landed me in bed and so Alan is at the beginning of it.
I also was a bit anxious the last day and had some nightmares last night...woke up with a bad headache this morning...I have not been feeling the most emotionally stable today. I was supposed to have a haematologist appointment yesterday but was too unwell to make it. Alan went in my place to discuss a few things and one of the few things really upset me...what the haematologist said....you know, we all know about the negative things about FA but it is really hard when a doctor or doctors keep driving this information down...I know about how bad FA can be but I am trying to keep on living and live hope in my life by making certain decisions to do some special things with my life and it feels really discouraging when they keep going home of this risk thing.....if all I did was live according to all the risks with FA i would not have become a registered nurse...a mother...a wife...travelled and all sorts of things....I feel very restricted by the medical world. My old haematologist...the one I really liked..used to tell me that he knew I understood all the risks so he was not going to keep mentioning them because I am an adult and we had discussed them and he knew that I was in my right mind and that I should be able to have hope and live life because I know what the risks are and I am making fully informed decisions....so I felt like I had hope to do things to just live but I have struggled with my right to do that since he left...it has been so discouraging. Well, I had tears over some things that were said and Alan and I discussed them and we know how we feel about these things and are standing firm because we know what we want to do as a couple, as parents...as individuals who face this disease..we know what we think is best for our family......I am not actually gonna talk about our secret discussions as husband and wife......they are for us right now...
Anyway, so I don't have any any funny things to discuss today...sorry...all deep stuff.
I sure hope I didn't do any damage or cause more anxiety for Isaac with my accidently upset...I don't want him to think I am cross...he seems fine now but I worry! It is so hard to do everything right as a parent, an individual and a wife sometimes...that is life though...God is helping me. I have to remember that...He really is.
Ok, well til later,
Love Charisse
Tuesday, June 12, 2007
Isaac is funny/camp sunshine
I am sick!!!! Ahhhhhh...that is what I feel like doing. I caught Isaac's virus that he is recovering from. I feel awful. I woke up this morning and sat in the lounge and a tear ran down my face...you think that is dramatic? Well...you see I hate being sick or sore or anything else and sometimes I just feel fed up with feeling so under the weather..I only just got over most of my IVIG reaction...today I have been sleeping in bed most of the day and just got up to write in my blog.
Anyway, yesterday Isaac made me laugh. I knew I was coming down with something yesterday. I felt so strange...anyway....it is nice to have a little boy who brings so much laughter into one's world.
After his sleep yesterday, when I told him we had to go to his doctor for a check up he said, "but i feel better"...and I said, "Well we are going for a check up with the doctor and he can check your throat and your ears and tummy"...and he said, "will he look at my nose? It is big...it is big....and blocked...and my nostrils"...and he starts describing his nostrils..very interesting. My mum was in the next room and called out "what is he talking about"...anyway...it is actually really funny, My sister and Alan joke about nostrils all the time....Alan has even written a silly poem about my sister's nostrils and left it on the fridge...of course mum comes to visit and saw it and thinks we are all crazy and laughs....Isaac obviously was listening to me talk to my sister when Alan insisted I read this stupid poem to her on the phone....I realised that is why Isaac is now talking about nostrils and start laughing...now when I laugh I laugh hysterically...and Isaac finds this highly amusing you see....so he just has a big smile.....and then he will say, "mummy, stop laughing....shhh....no laughing...shh....stop"...in amongst this time I am trying to quit laughing and keep giggling and he will always say, "stop"...with a smile...and, "shh, shh"...it is actually really funny....I find it funny.
So on our way back from the paediatrician, I was strapping him back in his seat for the car ride home..and I don't know what he said but he pulled my face close and said something and smiled SO cute....so I kissed him on his forehead...he said something esle which was prescious and I started to just laugh..so much that I had to hang on to his car seat to stop from falling over...Isaac has a huge smile on his face and he has his finger up to his face, "shh...stop...shh...drive!"...he doesn't say this mean like. He has a huge smile on his face the WHOLE time and finds it very funny that mummy laughs like she does...and Isaac trying to tell me to "stop and drive" with the smile on his face makes me laugh even more...then he starts to giggle...anyway...this happens all the time with different things and it is really funny.
OK....now for serious stuff again. At the beginning of the year we applied for a grant from some place here in Australia ...a research grant because we are "FA Australia" to get to Camp Sunshine...a camp for people who have the disease Fanconi Anaemia"..that is what I have. We were accepted and our whole fair was covered for getting there. The a week or so later..they pulled the grant from us and explained certain reasons to us.
Then we applied for another one that one of their people encouraged us to apply for and said that we had a good chance...so we applied...today, to much disappointment we were declined that grant and still do not have any money to go to camp sunshine. I have had tears. It is SO difficult in Australia sometimes because we are pretty isolated here with FA. It is not easy to wip up $10 000 to go to camp. That is how much it would cost us to just get there..and I don't think that is a secret. It is expensive from Australia. I am actually feeling very discouraged. We have applied to camp sunshine like we would be there...we are planning to be there...we just need help with finances...so we are trying one more thing for finances and I honestly don't know what will happen...if this fails...well be will not be able to come. I will be so disappointed because I have never met John Hanna...and am really wanting to meet him. Hi John! Don't mind me...but I long to meet you ...as you know....and I won't get to see people who I have made friends with from 2 years ago..and I don't know when I would see them again. Teresa and Tyler and Kristin....my close friends..I really want to see you all...and it would definitely benefit FA Australia to have the updated research from the lectures and stuff....
Anyway, pray an hope...pray that this last "finance help" may help...otherwise I will let you guys know the final decision...but it may be a last minute thing you see...these grants and finace things often leave everything til the last moment..so it is heaps hard.
SO there is my whole update. I hope people are well and I will keep you updated as to what is gonna happen next!
Love Charisse
Anyway, yesterday Isaac made me laugh. I knew I was coming down with something yesterday. I felt so strange...anyway....it is nice to have a little boy who brings so much laughter into one's world.
After his sleep yesterday, when I told him we had to go to his doctor for a check up he said, "but i feel better"...and I said, "Well we are going for a check up with the doctor and he can check your throat and your ears and tummy"...and he said, "will he look at my nose? It is big...it is big....and blocked...and my nostrils"...and he starts describing his nostrils..very interesting. My mum was in the next room and called out "what is he talking about"...anyway...it is actually really funny, My sister and Alan joke about nostrils all the time....Alan has even written a silly poem about my sister's nostrils and left it on the fridge...of course mum comes to visit and saw it and thinks we are all crazy and laughs....Isaac obviously was listening to me talk to my sister when Alan insisted I read this stupid poem to her on the phone....I realised that is why Isaac is now talking about nostrils and start laughing...now when I laugh I laugh hysterically...and Isaac finds this highly amusing you see....so he just has a big smile.....and then he will say, "mummy, stop laughing....shhh....no laughing...shh....stop"...in amongst this time I am trying to quit laughing and keep giggling and he will always say, "stop"...with a smile...and, "shh, shh"...it is actually really funny....I find it funny.
So on our way back from the paediatrician, I was strapping him back in his seat for the car ride home..and I don't know what he said but he pulled my face close and said something and smiled SO cute....so I kissed him on his forehead...he said something esle which was prescious and I started to just laugh..so much that I had to hang on to his car seat to stop from falling over...Isaac has a huge smile on his face and he has his finger up to his face, "shh...stop...shh...drive!"...he doesn't say this mean like. He has a huge smile on his face the WHOLE time and finds it very funny that mummy laughs like she does...and Isaac trying to tell me to "stop and drive" with the smile on his face makes me laugh even more...then he starts to giggle...anyway...this happens all the time with different things and it is really funny.
OK....now for serious stuff again. At the beginning of the year we applied for a grant from some place here in Australia ...a research grant because we are "FA Australia" to get to Camp Sunshine...a camp for people who have the disease Fanconi Anaemia"..that is what I have. We were accepted and our whole fair was covered for getting there. The a week or so later..they pulled the grant from us and explained certain reasons to us.
Then we applied for another one that one of their people encouraged us to apply for and said that we had a good chance...so we applied...today, to much disappointment we were declined that grant and still do not have any money to go to camp sunshine. I have had tears. It is SO difficult in Australia sometimes because we are pretty isolated here with FA. It is not easy to wip up $10 000 to go to camp. That is how much it would cost us to just get there..and I don't think that is a secret. It is expensive from Australia. I am actually feeling very discouraged. We have applied to camp sunshine like we would be there...we are planning to be there...we just need help with finances...so we are trying one more thing for finances and I honestly don't know what will happen...if this fails...well be will not be able to come. I will be so disappointed because I have never met John Hanna...and am really wanting to meet him. Hi John! Don't mind me...but I long to meet you ...as you know....and I won't get to see people who I have made friends with from 2 years ago..and I don't know when I would see them again. Teresa and Tyler and Kristin....my close friends..I really want to see you all...and it would definitely benefit FA Australia to have the updated research from the lectures and stuff....
Anyway, pray an hope...pray that this last "finance help" may help...otherwise I will let you guys know the final decision...but it may be a last minute thing you see...these grants and finace things often leave everything til the last moment..so it is heaps hard.
SO there is my whole update. I hope people are well and I will keep you updated as to what is gonna happen next!
Love Charisse
Update on my precious boy!
Hey All,
well Isaac's temp finally came down last night and he went to sleep. He looked so pale! He slept well though. However, I kept him home from preschool today. He did have official preschool photos happening at kindy today so I took him in for that alone. Poor kid...he was actually a lot brighter today than yesterday and I think it is because his temperature was not spiking...which was good. Still pale....still unwell and tires easily and puffs and stuff....nasty cough...runny nose, no appetite. So we rang the kindy and they asked me to bring him in at 1pm and the photographer would take action/play photos and then do a group photo...mimic it and digitally put him in the morning class photo...he says he does it all the time.
We got there and Isaac ran to play on the equipement and a helper at the kindy saw him and they said, "Isaac you need to go inside....when you get to kindy you have to say hello first"...he turned around and obeyed and started walking up the ramp and athen turned and big tears...he started to cry. Isaac really has not been very well and he is very sensitive about it. He was doing no wrong playing...we were doing what we were told...to wait outside for the photographer..when Isaac walked into kindy the teacher said, "Isaac love, you don't need to be in here...you are a sick boy...you just wait out there for the man to take your photo and then you can go straight home"....so he was not in the wrong at all...he was not even officially at kindy today...he didn't have to follow their rules. So out we went...but I had to carry him because he was so upset about the fact that he had been told off. The photo man was really nice and silly...but Isaac needed some time to calm down from his tears the poor love.
Once he had had his cuddle....he was happy to play in the sandpit with me...and then the man came up and Isaac thought he was funny and he talked with him...no problems...I think we will have nice kindy photos!
So after that we left and went to have lunch. I have not been feeling well today. I feel clammy all over and I can only think that I am getting Isaac's cold/virus that he has...I have felt horrible.....very lethargic and actually felt a bit cross about it this morning...sometimes it feels like I only experience fatigue, pain, infusion reactions, time of the month...and so on...plus the colds that come with winter...it can be very frustrating.
Anyway, today Isaac had a check up with his paediatrician...and as soon as he walked in he started chatting.,....," Oh you are not whatsaysnames dad?"....Isaac's best friend at kindy...his parents are both doctors...."but you are a doctor?"...says Isaac who then goes on to report his "naughty cough" and sore throat and sore belly and that he needs someone to help it....he talked all the way through the appointment...not me! Hehe....He has a bad virus so he is not going to kindy all week...but he is feeling a little better. He has grown 4 cm in the last 5 months and his weight is a bit low...but he is a little guy...they always keep watch on his weight.
He did a poo on the toilet today...a big one. The doctor decided to hold off the rest of the bowel wash....the regular medication that I give him has upped the dose and it seems to be helping him. Today he went two times to the big toilet...number 2's and got his special toy that I promised him...let's hope he keeps this up and his belly aches go away!
Ok, ok....I better go to bed...it is late...
Thanks for reading!
Love Charisse
well Isaac's temp finally came down last night and he went to sleep. He looked so pale! He slept well though. However, I kept him home from preschool today. He did have official preschool photos happening at kindy today so I took him in for that alone. Poor kid...he was actually a lot brighter today than yesterday and I think it is because his temperature was not spiking...which was good. Still pale....still unwell and tires easily and puffs and stuff....nasty cough...runny nose, no appetite. So we rang the kindy and they asked me to bring him in at 1pm and the photographer would take action/play photos and then do a group photo...mimic it and digitally put him in the morning class photo...he says he does it all the time.
We got there and Isaac ran to play on the equipement and a helper at the kindy saw him and they said, "Isaac you need to go inside....when you get to kindy you have to say hello first"...he turned around and obeyed and started walking up the ramp and athen turned and big tears...he started to cry. Isaac really has not been very well and he is very sensitive about it. He was doing no wrong playing...we were doing what we were told...to wait outside for the photographer..when Isaac walked into kindy the teacher said, "Isaac love, you don't need to be in here...you are a sick boy...you just wait out there for the man to take your photo and then you can go straight home"....so he was not in the wrong at all...he was not even officially at kindy today...he didn't have to follow their rules. So out we went...but I had to carry him because he was so upset about the fact that he had been told off. The photo man was really nice and silly...but Isaac needed some time to calm down from his tears the poor love.
Once he had had his cuddle....he was happy to play in the sandpit with me...and then the man came up and Isaac thought he was funny and he talked with him...no problems...I think we will have nice kindy photos!
So after that we left and went to have lunch. I have not been feeling well today. I feel clammy all over and I can only think that I am getting Isaac's cold/virus that he has...I have felt horrible.....very lethargic and actually felt a bit cross about it this morning...sometimes it feels like I only experience fatigue, pain, infusion reactions, time of the month...and so on...plus the colds that come with winter...it can be very frustrating.
Anyway, today Isaac had a check up with his paediatrician...and as soon as he walked in he started chatting.,....," Oh you are not whatsaysnames dad?"....Isaac's best friend at kindy...his parents are both doctors...."but you are a doctor?"...says Isaac who then goes on to report his "naughty cough" and sore throat and sore belly and that he needs someone to help it....he talked all the way through the appointment...not me! Hehe....He has a bad virus so he is not going to kindy all week...but he is feeling a little better. He has grown 4 cm in the last 5 months and his weight is a bit low...but he is a little guy...they always keep watch on his weight.
He did a poo on the toilet today...a big one. The doctor decided to hold off the rest of the bowel wash....the regular medication that I give him has upped the dose and it seems to be helping him. Today he went two times to the big toilet...number 2's and got his special toy that I promised him...let's hope he keeps this up and his belly aches go away!
Ok, ok....I better go to bed...it is late...
Thanks for reading!
Love Charisse
Sunday, June 10, 2007
My poor little Isaac
Well,
Isaac woke this morning feeling really unwell. Not the bowel thingy...something else. He felt like he was burning up when he got up at 0730 this morning. Alan usually tends to him while I sleep a bit more (lower energy levels with FA)...but Isaac was really miserable and crying and so I knew he wanted his mummy. He felt really hot and so I took his temperature and it was 38.9 degrees celcius...( about 102 degrees F) No wonder he was feeling awful. So I gave him some panadol and dimetapp because his nose was heaps clogged as well..and he lay on my lap in the lounge for a while. By 0830 he was happy to lay with daddy and I hoped back into bed for more of a rest. Sundays are always big days and so I make sure I rest heaps on a Monday. I ended up sleeping until about 10am!
When I got up Isaac looked a lot better and Alan had his dressed. We decided to hold the bowel prep for today and ask his paediatrician when we should start it again. There is no point making him extra miserable when he already is miserable and has not got his usual appetite or energy to drink heaps...let alone have bowel problems.
I wondered around in my PJ's for the morning. It is a public holiday here today....apparently the Queen's birthday (I just yelled out and asked Alan which public holiday it was...hehe). Isaac and Alan did some colouring in and also played play doe...and I put some loads of washing on.
After that Isaac seemed to be feeling poorly again and went all pale and started to moan and cry a bit...he was due more panadol and he didn't want me to check his temperature...so I left that for the moment...but he wanted mummy..I was just about to go in the shower but thought that I would cuddle Isaac instead since we were not planning on doing anything else much today.
He was shaking a bit and so I put him on my lap in the lounge and stroked his face and he fell asleep for a short while. Alan went and borrowed a DVD from the shop espcially for Isaac to watch..the movie, "Cars"...he likes that.
After this he watched the movie on his couch.
While he was doing that I had an idea to do some spring cleaning! Except for the fact that it is actually winter here...hehe. Can you tell I feel a bit better today. My pain in my head has almost gone...just feeling a little lethargic. I cleaned the top of the tiles in the kitchen for about 20 mins (like the edge of the top which had all dust on it)...and then I felt tired. I then had a shower and stuff..so I am all ready now.
Isaac is in bed and tonight we will have tea with Alan's mum and dad. I think Isaac will just lay on the couch.
SO poor Isaac isn't feeling well and tomorrow was supposed to be his official preschool photos with his class..I am going to keep him home but see what time the photos are and may be take him especially for that. We will see how we go. Otherwise Isaac just has a paediatric appointment tomorrow and as for me....I have an appointment on Thursday and a haematologist appointment on Friday...just usual follow up.
Well, I am enjoying writing on my new blog...hope you have enjoyed it all...and thanks for writing in my comment section..it is exciting!
Love Charisse
Isaac woke this morning feeling really unwell. Not the bowel thingy...something else. He felt like he was burning up when he got up at 0730 this morning. Alan usually tends to him while I sleep a bit more (lower energy levels with FA)...but Isaac was really miserable and crying and so I knew he wanted his mummy. He felt really hot and so I took his temperature and it was 38.9 degrees celcius...( about 102 degrees F) No wonder he was feeling awful. So I gave him some panadol and dimetapp because his nose was heaps clogged as well..and he lay on my lap in the lounge for a while. By 0830 he was happy to lay with daddy and I hoped back into bed for more of a rest. Sundays are always big days and so I make sure I rest heaps on a Monday. I ended up sleeping until about 10am!
When I got up Isaac looked a lot better and Alan had his dressed. We decided to hold the bowel prep for today and ask his paediatrician when we should start it again. There is no point making him extra miserable when he already is miserable and has not got his usual appetite or energy to drink heaps...let alone have bowel problems.
I wondered around in my PJ's for the morning. It is a public holiday here today....apparently the Queen's birthday (I just yelled out and asked Alan which public holiday it was...hehe). Isaac and Alan did some colouring in and also played play doe...and I put some loads of washing on.
After that Isaac seemed to be feeling poorly again and went all pale and started to moan and cry a bit...he was due more panadol and he didn't want me to check his temperature...so I left that for the moment...but he wanted mummy..I was just about to go in the shower but thought that I would cuddle Isaac instead since we were not planning on doing anything else much today.
He was shaking a bit and so I put him on my lap in the lounge and stroked his face and he fell asleep for a short while. Alan went and borrowed a DVD from the shop espcially for Isaac to watch..the movie, "Cars"...he likes that.
After this he watched the movie on his couch.
While he was doing that I had an idea to do some spring cleaning! Except for the fact that it is actually winter here...hehe. Can you tell I feel a bit better today. My pain in my head has almost gone...just feeling a little lethargic. I cleaned the top of the tiles in the kitchen for about 20 mins (like the edge of the top which had all dust on it)...and then I felt tired. I then had a shower and stuff..so I am all ready now.
Isaac is in bed and tonight we will have tea with Alan's mum and dad. I think Isaac will just lay on the couch.
SO poor Isaac isn't feeling well and tomorrow was supposed to be his official preschool photos with his class..I am going to keep him home but see what time the photos are and may be take him especially for that. We will see how we go. Otherwise Isaac just has a paediatric appointment tomorrow and as for me....I have an appointment on Thursday and a haematologist appointment on Friday...just usual follow up.
Well, I am enjoying writing on my new blog...hope you have enjoyed it all...and thanks for writing in my comment section..it is exciting!
Love Charisse
Testing my New Blog!
Hi There Everyone,
wow...look at my new blog. I am rather excited....dear Teresa did this for me....of course she asked me how I wanted it...but the end product so far is great...so I thought I would test my blog out! Do ya'll like it? I do...thanks Teresa so much for doing this for me...it is great. Now I just need to get family photos up and so on.
Update on my health...I ended up having the reaction to my IVIG which was the aseptic meningitis....I have had a hard week with pain through my eye balls and temple area and neck stiffness and back pain and fainting, hot flushes and ringing in both my ears...it has been horrible. We rang the hospital a couple of times this week because it was just so bad but there is not much we can do about it. I have had some steroid treatment to decrease the inflammation.....and pain relief...which was not working mind you....however, with that all said...today was a better day for me...I think yesterday I woke up and thought, "the reaction has turned the corner"..and today the pain relief is working and the pain has decreased again...so what a relief that this will be over soon.
We had lunch with Isaac's great Nanna today...Alan's Nanna...it was nice. I enjoyed lunch so much...it was a chicken dish..beautiful...so she gave me the recipe and I think I will try it. We don't get to catch up too often because she is so far away from us. It was nice for us to see her. We go to church in Woodville which is about 45 min from our home and she lived a further 25 min from there so we went there after church.
Poor Isaac has not been 100% the last couple of days. He has a cold again...but he also seems to have a problem with his bowel. I talked to the paediatrician and he thinks that Isaac's brain has learnt to give him the wrong cues with his bowel..so it is not going at the right time and is letting everything build up...I won't go into too much detail. Isaac had to have a laxative sachet on Saturday to help clean him out and then tomorrow....and then start a bowel softner regularly at a higher dose than what he has been on and this problem with the receptors of the brain and bowel should re-set itself in about 3 months time. Poor Isaac gets a belly ache and he doesn't much like this stuff that helps clean him out. I know that no person likes these things....these sachets. I used to work in Gastroenterology as a registered nurse and was always giving out bowel preps for patients having colonoscopies and they were not pleasant for the patient to go through at home before the procedure. I will do relief work there now but not permanent...like before Isaac was born...I work in a whole variety of wards right now.
Alan is doing well. He has been busy with lots of work. He has church work that he is doing....and his new business and his work that he works with right now. He does technically have Monday and Wednesdays off for family days...making the most of us all being together and we like that...but he often does some work on those days when I am resting and Isaac is at kindy.....
Ah yes....just in case anyone gets confused with my new blog and signing the guestbook type thingy....it is not called a guestboook but at the bottom of my entry it will have "comments" written..of what I can remember...and you click on that and it will come up with a box you can comment in....you can write in that and if you don't have a blogger account or google account...then just select "anonymous" and then you just type in those letters that it asks....and publish it....follow the prompts...that is so people who don't have those accounts can sign and let me know that you have been here.......I love seeing little messages. It encourages me.
Ok, got to go...that is my first blog written! How exciting. Have a good night or day....
Love Charisse
wow...look at my new blog. I am rather excited....dear Teresa did this for me....of course she asked me how I wanted it...but the end product so far is great...so I thought I would test my blog out! Do ya'll like it? I do...thanks Teresa so much for doing this for me...it is great. Now I just need to get family photos up and so on.
Update on my health...I ended up having the reaction to my IVIG which was the aseptic meningitis....I have had a hard week with pain through my eye balls and temple area and neck stiffness and back pain and fainting, hot flushes and ringing in both my ears...it has been horrible. We rang the hospital a couple of times this week because it was just so bad but there is not much we can do about it. I have had some steroid treatment to decrease the inflammation.....and pain relief...which was not working mind you....however, with that all said...today was a better day for me...I think yesterday I woke up and thought, "the reaction has turned the corner"..and today the pain relief is working and the pain has decreased again...so what a relief that this will be over soon.
We had lunch with Isaac's great Nanna today...Alan's Nanna...it was nice. I enjoyed lunch so much...it was a chicken dish..beautiful...so she gave me the recipe and I think I will try it. We don't get to catch up too often because she is so far away from us. It was nice for us to see her. We go to church in Woodville which is about 45 min from our home and she lived a further 25 min from there so we went there after church.
Poor Isaac has not been 100% the last couple of days. He has a cold again...but he also seems to have a problem with his bowel. I talked to the paediatrician and he thinks that Isaac's brain has learnt to give him the wrong cues with his bowel..so it is not going at the right time and is letting everything build up...I won't go into too much detail. Isaac had to have a laxative sachet on Saturday to help clean him out and then tomorrow....and then start a bowel softner regularly at a higher dose than what he has been on and this problem with the receptors of the brain and bowel should re-set itself in about 3 months time. Poor Isaac gets a belly ache and he doesn't much like this stuff that helps clean him out. I know that no person likes these things....these sachets. I used to work in Gastroenterology as a registered nurse and was always giving out bowel preps for patients having colonoscopies and they were not pleasant for the patient to go through at home before the procedure. I will do relief work there now but not permanent...like before Isaac was born...I work in a whole variety of wards right now.
Alan is doing well. He has been busy with lots of work. He has church work that he is doing....and his new business and his work that he works with right now. He does technically have Monday and Wednesdays off for family days...making the most of us all being together and we like that...but he often does some work on those days when I am resting and Isaac is at kindy.....
Ah yes....just in case anyone gets confused with my new blog and signing the guestbook type thingy....it is not called a guestboook but at the bottom of my entry it will have "comments" written..of what I can remember...and you click on that and it will come up with a box you can comment in....you can write in that and if you don't have a blogger account or google account...then just select "anonymous" and then you just type in those letters that it asks....and publish it....follow the prompts...that is so people who don't have those accounts can sign and let me know that you have been here.......I love seeing little messages. It encourages me.
Ok, got to go...that is my first blog written! How exciting. Have a good night or day....
Love Charisse
Friday, June 1, 2007
Birthday Party
Well I had a good birthday party..."How to Host a Murder" night! It was great. We finished playing...or acting out the game at 12 mid-night and I didn't get to bed until 2.30am. I can tell you I was worried it would affect my health. However, I rested the next day....feeling totally exhausted. I had a great time. My friends all dressed up in the era that the game was in....we were all actresses or writers or producers of a movie...and while we were celebrating the movie that we were about to release at a pre-dinner event someone was "murdered" and we listened to a tape with the detective talking to us...it was up to us to find out who did it and he wouldn't go to the copes about what he knew about us. SO the murder mystery began with us following our prompts in our books and asking questions to gain as much info from everyon possible so we could make an accusation on who did it. It was fun. There were 4 rounds to the game...and each round revealed more about the people around you and you had to question their actions and then the whole group would talk about it. What fun! I would like to do it again. I feel like it was the best birthday! I really had a good time with my birthday...hehe
Unfortunately, Sunday I hit a downer. You all know that sometimes I become so anxious about life that I just go into a spin and have huge anxiety attacks...this happened for 2 days straight. I wanted to be sedated because I felt so distressed. We dropped Isaac off at nanna so he would not witness how stressed I was...something did trigger it all off....a doctor's appointment actually triggered it off but it was terrible.
What a contrast from a great birthday to complete anxiety.
There has been lots of chats with my sister and mum and dad and Alan and my doctors...to help me through what I am going through...not to mention the fact that I rely of Jesus, my God the most...because without Him I honestly think I would not be here....emotionally or physically.
I had prayer meeting on Thursday night and was able to share my intimate thoughts with them all and the amazing support that actually happened that night was amazing. I have been needing support with the intimate thoughts I have had and with my search with life and having FA for a long time and it was good to hear those people sharing this burden with me and really sounding like they understood to the level that they could. I felt more peace about things that night...that doesn't mean my struggle of having anxiety over life and FA is gone...but it helps when you have more peace over your decisions and how God is leading the way and your friends and family are supporting you.
I had my IVIG infusion today. What a day! It felt so long. The red cross got confused and apparently "forgot" that I have my infusions 4 weekly and never sent my stuff...I had to wait a lot of the day for it...then they could not get a jelco in for about 1 1/2 hours...they tried 5 times and finally got it...my arms are heaps sore.....I never bleed when they want me too! Ha...not because I have ultra high platelets but becasue it is just me...I don't seem to bleed easily or bruise easily...my body copes well...but today with two of the places they tried....they proded and poked in that one vein for a long time and I was bound to bruise....in both areas...when they were proding and poking in and out and around that vein I felt so ill....and very sore....but I closed my eyes and tried to breathe. There was more to today but it is all a long story!
Isaac visited me for the first time at infusion today and had lots of questions about the IV and the bandaides and "yellow" stuff (antiseptic) on my arm from all the jelco tries....he is so sweet...he didn't want to leave and said, "I need you mummy"...I told him that he needed to go home for a sleep and mummy will see you after I finish my medicine and be at home tonight.....he ran into the middle of the room at the center and blew me the biggest kiss...everyone in the room thought he was so sweet and was smiling and cooing and awwing and stuff....so sweet.
So not I feel wiped out and should be going to bed to minimise the reactions of the IVIG!
Bless you all and hope you are doing well.
Love Charisse
Unfortunately, Sunday I hit a downer. You all know that sometimes I become so anxious about life that I just go into a spin and have huge anxiety attacks...this happened for 2 days straight. I wanted to be sedated because I felt so distressed. We dropped Isaac off at nanna so he would not witness how stressed I was...something did trigger it all off....a doctor's appointment actually triggered it off but it was terrible.
What a contrast from a great birthday to complete anxiety.
There has been lots of chats with my sister and mum and dad and Alan and my doctors...to help me through what I am going through...not to mention the fact that I rely of Jesus, my God the most...because without Him I honestly think I would not be here....emotionally or physically.
I had prayer meeting on Thursday night and was able to share my intimate thoughts with them all and the amazing support that actually happened that night was amazing. I have been needing support with the intimate thoughts I have had and with my search with life and having FA for a long time and it was good to hear those people sharing this burden with me and really sounding like they understood to the level that they could. I felt more peace about things that night...that doesn't mean my struggle of having anxiety over life and FA is gone...but it helps when you have more peace over your decisions and how God is leading the way and your friends and family are supporting you.
I had my IVIG infusion today. What a day! It felt so long. The red cross got confused and apparently "forgot" that I have my infusions 4 weekly and never sent my stuff...I had to wait a lot of the day for it...then they could not get a jelco in for about 1 1/2 hours...they tried 5 times and finally got it...my arms are heaps sore.....I never bleed when they want me too! Ha...not because I have ultra high platelets but becasue it is just me...I don't seem to bleed easily or bruise easily...my body copes well...but today with two of the places they tried....they proded and poked in that one vein for a long time and I was bound to bruise....in both areas...when they were proding and poking in and out and around that vein I felt so ill....and very sore....but I closed my eyes and tried to breathe. There was more to today but it is all a long story!
Isaac visited me for the first time at infusion today and had lots of questions about the IV and the bandaides and "yellow" stuff (antiseptic) on my arm from all the jelco tries....he is so sweet...he didn't want to leave and said, "I need you mummy"...I told him that he needed to go home for a sleep and mummy will see you after I finish my medicine and be at home tonight.....he ran into the middle of the room at the center and blew me the biggest kiss...everyone in the room thought he was so sweet and was smiling and cooing and awwing and stuff....so sweet.
So not I feel wiped out and should be going to bed to minimise the reactions of the IVIG!
Bless you all and hope you are doing well.
Love Charisse
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