Hello All,
well a day or so later I noticed something on Isaac's new tooth. We rang on Monday to ask about it and it is just a cosmetic thing where the cap has been put on and can be fixed in the chair...or funny little bed thing they have for children. Isaac's follow up appointment is on Wed next week. What a relief everything has been ok. He has been SO well this week...no ulcers, no tosilitis and no sore tooth!
After Isaac's surgery I really got very tired. I slept til 1230pm one of the days after. I felt like IVIG was making me tired too but that has passed now. I did get a horrible ulcer on my tongue which is quite deep and my tongue went all white on the sides...that whiteness has decreased now but my tongue is still sore. The ulcer seems smaller today. I have been doing mouth care and next week on Thursday I have an ENT appointment to check my mouth and tongue. Looks like this was all tired induced though and stress from doing heaps more last week.
Today I woke up with an annoying little cough that comes from the base of your throat. I had more Goji Juice and stuff to help me fight it off and not catch the full thing. I also did nothing today and just rested. Isaac had a school appointment for his first year at school next year but I had to let Alan just go, otherwise I would have been pushing myself.
However, yesterday I managed to get to Isaac's preschool for their book launch. All the kids were dressed up in pirate outfits...and Isaac did as well. I honestly thought he would not want to do it. I got there at the end of morning preschool and they were all out on the grass in their make shift pirate ship and they performed 3 pirate songs for us parents and then we had a sausage sizzle (sausages/bread/sauce on the Barby or BBQ). It was a lot of fun and I was so glad that I could watch Isaac. As soon as he saw me he was singing the loudest and doing the biggest actions with a huge smile on his face and many parents commented on how well "that child was singing"...hahaha....it made me laugh.
I was supposed to have a chest ultrasound today to double check that the fluid on my lung is gone....and then I was supposed to see my specialist and have bloods done. I have been SO tired this week...I knew my body could not cope today so we re-scheduled the chest ultrasound until Friday and when I see my GP tomorrow I will have bloods and then we will call the specialist with all the results on Monday. I just feel like whenever I go out...it is to appointments and I never get to just go out and have fun with Isaac because I am too tired from appointments! I just need to be able to relax sometimes!
Isaac didn't have a sleep today. I told him he needed to just rest in his room until Mummy came to get him if he couldn't sleep. He couldn't sleep and part way through his rest time I got out some books for him to look through quietly in his bed. He was so good and read them all to himself until I said he could come out 1/2 hour later. Alan slept for an hour...after Isaac was out of his room again we did some play dough for an hour.....now Isaac is watching a one of his DVD's.
Alan's sister is coming tonight to give me a massage....oh it will be so nice. She came on Saturday and gave me one...a professional one...and Alan too. Jacqui is doing a massage course! She is going to be practising as a fully qualified massager and while she is doing her course she has asked for people to practise on! She does it really well and it has been relaxing for me as well. I get so stressed about FA and other issues related to it that I seem to not relax....and this is really good for me! So Jacqui....if you are reading this....THANKS and you are REALLY GOOD! I hope you get everything you need to get and finish your course and really do well with the massage therapy....I know you will...and it is exciting that you are doing what you really want to do!
Well, if bloods are really different...I will let you know. I hope the platelets are more up this week. They dropped last week. The haemaglobin was holding at 12 and neuts had gone up to 1000 from 100. Liver results were coming down...oh and I have not felt nearly as nauseated this week...what a relief!
I will also let you know about the chest ultrasound for the fluid on the lung. Otherwise, I really think I am getting better slowly.
Yesterday I did some laps around our huge backyard for exercise and I have done some ball play with Isaac outside. I just need to be careful because if I do too much I tend to faint.
I also went to the shops for the first time since the 4th September! And not in a wheelchair. I am not puffing anymore...just got to watch the fainting. I don't need nebulisers anymore...so I am doing well.
Ok, I suppose I better go. Oh I have been having a GREAT time on the Fanconi Island site! Racquel has done a great job with that site and it is great having somewhere to go where you can get emotional support with FA and talk to friends about anything you want. There is so much that benefits us FA families on that site...so if you have not signed up.....I would recommend it!
Better go!
Thanks for checking on me.
Love Charisse
Wednesday, September 26, 2007
Friday, September 21, 2007
Family Update
Hello All,
well the 19th September has come and gone. That was my original date for my gynae surgery I shared about a little while ago. I definitely would not have been up for that after the pnuemonia so soon. The new date was set for 15th October...however, I am not sure if I will be ready for that either. I am really doing well with my recovery but my marrow is still jumping all over the place...neuts up this week and platelets dropped a bit again.
However, liver results have come down...everything is just everywhere right now. I know one thing though - I am getting stronger each day and have put some weight back on. I lost 10 kilos in total but since the eating has picked up again a couple have come back on again which is good I suppose.
I had infusion (IVIG) this past Wednesday. It went well. I usually have it on a Friday but Isaac had his tooth restoration and tongue surgery today and I needed to be with him. I am SO tired. I have not done this much stuff since I was sick in hospital!
So today Isaac had his surgery and it went well. I had a hard time getting up this morning but mum came with Isaac and I. She drove the car. Isaac did so well. He was a bit rushed and upset when we arrived but after we went into the surgical waiting area in the theatre part he was ok when the nurse offered him a helium balloon. He started talking right away then and skipping around. So he skipped right into the theatre to the doctor and hopped up on my lap understanding that he was going to be given sleepy medicine before he had his tooth fixed. Even though we had talked about it with him, I think he was surprised with the little anaesthetic mask thing they used for the gas and he let them put it on while cradling in my arms but when he was not falling asleep straight away I saw panic in his eyes and he fought and that made me feel emotional and almost cry. He still had his balloon so I was asking him to look at me and look at the balloon and finally he relaxed and he went limp and I found that really emotional. I hate the smell of anaesthetic and operatiing rooms. I am so used to it from procedures with FA and biopsies...as soon as I walked in I tried not to react to the smell. However, after Isaac was falling asleep and was on the table I looked back at him and felt so strange. I found all of that really exhausting and felt like I was going to pass out! Mum and I went for some lunch and I almost did pass out. Once I had a rest on the couch and had some food we headed back to the day surgery and they called me to say Isaac was just out and did I want to come in. I did. He was crying a little when I came in and he had a jelco in one hand and some blood on him. I felt heaps emotional. They carried him out to a lounge that I sat on. Isaac became really aggitated and cried hysterically for about 50 mins. I could not stop him. It was heart breaking. I felt like crying too. He has a phobia about bandaides and of course he had the jeloc/IV access in and he was shaking that about and kicking and all sorts. He also was bothered by the name band on his leg and got so upset. Eventually I asked that they take the IV access out even though he had not eaten or drunk yet and cut the name band off. It was about 50 mins after that he calmed down and then we snuggled but I found that 50 mins of him being really upset rather exhausting and emotional. I wanted to break down and cry. I didn't want Isaac to see me cry.
Anyway, his tooth looks lovely. They cut his mild tongue tie too. He doesn't appear to remember the upset that he had. I think he gets really aggitated like I do after an anaesthetic. I know all children do but his was SO long. It really took time for them to understand that he is honestly freaked out by things like bandaides and anything stuck to his skin.
I am exhausted tonight and glad that it is all over. Now I need to catch up on some sleep and get some rest again because I am beat!
Alan is well. The changes with FA Australia are very exciting.
Ok, I will finish for now. Thanks for checking up on us!
Love Charisse
well the 19th September has come and gone. That was my original date for my gynae surgery I shared about a little while ago. I definitely would not have been up for that after the pnuemonia so soon. The new date was set for 15th October...however, I am not sure if I will be ready for that either. I am really doing well with my recovery but my marrow is still jumping all over the place...neuts up this week and platelets dropped a bit again.
However, liver results have come down...everything is just everywhere right now. I know one thing though - I am getting stronger each day and have put some weight back on. I lost 10 kilos in total but since the eating has picked up again a couple have come back on again which is good I suppose.
I had infusion (IVIG) this past Wednesday. It went well. I usually have it on a Friday but Isaac had his tooth restoration and tongue surgery today and I needed to be with him. I am SO tired. I have not done this much stuff since I was sick in hospital!
So today Isaac had his surgery and it went well. I had a hard time getting up this morning but mum came with Isaac and I. She drove the car. Isaac did so well. He was a bit rushed and upset when we arrived but after we went into the surgical waiting area in the theatre part he was ok when the nurse offered him a helium balloon. He started talking right away then and skipping around. So he skipped right into the theatre to the doctor and hopped up on my lap understanding that he was going to be given sleepy medicine before he had his tooth fixed. Even though we had talked about it with him, I think he was surprised with the little anaesthetic mask thing they used for the gas and he let them put it on while cradling in my arms but when he was not falling asleep straight away I saw panic in his eyes and he fought and that made me feel emotional and almost cry. He still had his balloon so I was asking him to look at me and look at the balloon and finally he relaxed and he went limp and I found that really emotional. I hate the smell of anaesthetic and operatiing rooms. I am so used to it from procedures with FA and biopsies...as soon as I walked in I tried not to react to the smell. However, after Isaac was falling asleep and was on the table I looked back at him and felt so strange. I found all of that really exhausting and felt like I was going to pass out! Mum and I went for some lunch and I almost did pass out. Once I had a rest on the couch and had some food we headed back to the day surgery and they called me to say Isaac was just out and did I want to come in. I did. He was crying a little when I came in and he had a jelco in one hand and some blood on him. I felt heaps emotional. They carried him out to a lounge that I sat on. Isaac became really aggitated and cried hysterically for about 50 mins. I could not stop him. It was heart breaking. I felt like crying too. He has a phobia about bandaides and of course he had the jeloc/IV access in and he was shaking that about and kicking and all sorts. He also was bothered by the name band on his leg and got so upset. Eventually I asked that they take the IV access out even though he had not eaten or drunk yet and cut the name band off. It was about 50 mins after that he calmed down and then we snuggled but I found that 50 mins of him being really upset rather exhausting and emotional. I wanted to break down and cry. I didn't want Isaac to see me cry.
Anyway, his tooth looks lovely. They cut his mild tongue tie too. He doesn't appear to remember the upset that he had. I think he gets really aggitated like I do after an anaesthetic. I know all children do but his was SO long. It really took time for them to understand that he is honestly freaked out by things like bandaides and anything stuck to his skin.
I am exhausted tonight and glad that it is all over. Now I need to catch up on some sleep and get some rest again because I am beat!
Alan is well. The changes with FA Australia are very exciting.
Ok, I will finish for now. Thanks for checking up on us!
Love Charisse
Saturday, September 15, 2007
Oh Dear....
Oh Dear,
that is what I feel like saying....and a big *SIGH* accompanied with it.
Isaac had tonsilitis. We took him to the doctor on Thursday and he had ulcers in his mouth and some puss and redness by his tonsil. So he is on antibiotic. Not long after beginning that he broke out with a couple of nasty ulcers on his bottom lip and that is all swollen too. My little boy is not one happy chappy. He has been waking up frequently during the night and whinning a lot. Today, it has felt like he has cried all day. I have a headache. Sometimes crying really gets at you, especially the whinning that goes along with it. He has not been able to do one thing today without breaking down. He is now in bed and I am glad because both Alan and I were starting to feel crazy while he has been crying and whinning. We have not been able to brush his teeth so are trying to do salt washes for his mouth care...very hard to do with a 4 1/2 year old who doesn't want a bar of it. That has been hard. We have needed to wipe over his broken tooth with a salt water tissue as well. He has swollen gums too. I know dear Alan has been dealing a lot with all the physical stuff with Isaac because it still exhausts me too much to do too much. Make sense? I hope Isaac sleeps well this afternoon.
I got to church last Sunday night for the worship. It was lovely. I must be heaps sensitive to perfume right now. I almost fainted at the church because of the ladies walking past me with perfume. We will hopefully get back for the worship again tonight.
Alan's brithday dinner was good. So many people. If you were there and are reading this...thank you for coming. I handled the night ok except when it hit 9pm. I had to ask Alan to help me on the floor in the corner because I was going to faint and throw up. I ended up throwing up a little there...just part of the exhaustion and the recovery from pneumonia. Mum and dad took me home earlier than Alan and then after everyone left again at home...I threw up again. I couldn't fall asleep until 3am...so I was so tired and slept the next day until 3.45pm!
Today I am still recovering from that party.
OK, I am going to go and sit down while Isaac is asleep and enjoy the quiet.
Thanks for checking up on me!
Love Charisse
that is what I feel like saying....and a big *SIGH* accompanied with it.
Isaac had tonsilitis. We took him to the doctor on Thursday and he had ulcers in his mouth and some puss and redness by his tonsil. So he is on antibiotic. Not long after beginning that he broke out with a couple of nasty ulcers on his bottom lip and that is all swollen too. My little boy is not one happy chappy. He has been waking up frequently during the night and whinning a lot. Today, it has felt like he has cried all day. I have a headache. Sometimes crying really gets at you, especially the whinning that goes along with it. He has not been able to do one thing today without breaking down. He is now in bed and I am glad because both Alan and I were starting to feel crazy while he has been crying and whinning. We have not been able to brush his teeth so are trying to do salt washes for his mouth care...very hard to do with a 4 1/2 year old who doesn't want a bar of it. That has been hard. We have needed to wipe over his broken tooth with a salt water tissue as well. He has swollen gums too. I know dear Alan has been dealing a lot with all the physical stuff with Isaac because it still exhausts me too much to do too much. Make sense? I hope Isaac sleeps well this afternoon.
I got to church last Sunday night for the worship. It was lovely. I must be heaps sensitive to perfume right now. I almost fainted at the church because of the ladies walking past me with perfume. We will hopefully get back for the worship again tonight.
Alan's brithday dinner was good. So many people. If you were there and are reading this...thank you for coming. I handled the night ok except when it hit 9pm. I had to ask Alan to help me on the floor in the corner because I was going to faint and throw up. I ended up throwing up a little there...just part of the exhaustion and the recovery from pneumonia. Mum and dad took me home earlier than Alan and then after everyone left again at home...I threw up again. I couldn't fall asleep until 3am...so I was so tired and slept the next day until 3.45pm!
Today I am still recovering from that party.
OK, I am going to go and sit down while Isaac is asleep and enjoy the quiet.
Thanks for checking up on me!
Love Charisse
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