What is Up with us?

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