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
Tuesday, June 12, 2007
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
Subscribe to:
Posts (Atom)