Lost His First Tooth!

Hello All,
silly computer! Ahhhh, I can't get this photo to move down! Usually I can write on top of this photo but every time I try, it deletes it. I just don't understand.....oh well.

On Monday, yesterday, Isaac lost his very first baby tooth! What a big boy! I was wondering when it was going to start. Isaac is 6 1/2 years old. We had no idea that his tooth was even wiggly! It was one of the bottom, front teeth. Isaac says the other one is slightly wiggly as well. He said that it just fell out while he was on the mat at school! Hehe.

He was happy to receive his 50 cents for his tooth today. Isaac actually knows the tooth fairy is not real. However, it is still exciting for him to get money. He put his tooth in a glass with water and had the 50 cent piece in there this morning and I had taken his tooth and put it somewhere safe. I couldn't bear to throw it right now.....my baby's tooth. He is gonna look so grown up once those adult teeth come through! Above there is a photo of him with his tooth gone. What a sweetie!

Anyway, just wanted to update on that briefy......something other than medical :-)

Below: Isaac wanted me to take a photo of him on the couch, covered by this blanket that nanna and others made for him. He wanted it as his background. It is lovely, isn't it?

Can you see how big my boy is getting?? Anyway, I need to get to bed! I am proud of Isaac.





Love Charisse

Update on all sorts! My medical and general, Isaac and Alan

Hello All,

well heaps has happened since I last wrote. A lot has happened since Isaac had his tonsils out. What should I update on first.

Myself. I have been working, pretty much, once a week in Theater Recovery at the hospital which has been really good but exhausting. 8 1/2 hour shifts are SO long and by the end of it, I feel so clummsy because my feet start to drag, lol! I have more shifts booked for the next month. Yay! I enjoye nursing.

I also decided to apply for another nursing job at a new Day Surgery Hospital opening here in the State. It will have oncology, opthamology and gastroenterology clinics and surgeries and of course, a recovery there. I applied for the gastorenterology day surgery/recovery since I have experience and background in those areas. I got a job interview and had it on Thursday at 11am. I feel that it was a good experience. I have been open with the fact that I have FA from the very beginning when I called to enquire about the job. They wanted to learn more about it in the interview and said it was ok if I wasn't open to share. I told them that, in sharing, I am trusting that they will not discriminate and they gave me their word so I shared more about it. It helps my employers to understand me more if I get a job. The questions they ask are hilarious....about the job. All these questions about what I would do in different clinical environments...etc, etc. I feel I answered them well. I have NO idea if I will get the job. I am looking for a casual position like at the hospital where I am booked monthly or weekly. I don't want to give up the hospital because I like keeping the skills up that are really challenging. I deal with C-sections and blocks and serious operations at the hospital and a day surgery, of course, would not deal with those things.

This unit that is opening up is actually where my Cancer center is moving too so that is funny. All the nurses at the cancer center, where I have my infusion, have to re-apply for the job since the Manager is new. I am a little nervous. I hope they get the job for the oncology part because they have great experience and there are a good couple of nurses who have great experience with my terrible veins. I trust them and feel safe with them. I know I will meet heaps of new nurses as well and that will be fine but after being at the cancer center for about 5 1/2 years, I feel like these nurses are family! The new oncology boss and the Director of Nursing were the two people who interviewed me and are interviewing the nurses from the cancer center as well. When I was at the center yesterday having my IVIG infusion, the nurses and I were all talking about it. Haha! That was amusing. I know that if I get the job, we have orientation days at the new work. I am wondering whether that will be all of us or the separate groups! The lady mentions that we are required to come to the both days. Hmmm....it will be funny if I get the job and the orientation days are for all of us. I would be with the nurses from the cancer center! How weird! I may not get the job though......they gave no indication of how the interview went. That is how the cancer center nurses felt as well :-)

It looks like my bone marrow biopsy will be the second week of June. I am really nervous. My platelets have been a little different and I am nervous about that. I don't really want to talk about my platelets........please pray for me as I have this procedure done and get results. Pray that my marrow has not progressed worse with the pre-leukaemia or gone to leukaemia. It is always a fear for me.

I am supposed to be shown through the transplant unit for emotional healing...remember? Well that has been delayed. I still want to go through that no matter how hard it is. I am waiting for the call.

Remember I have an area which has a lump in the girly area. Nice to chat about it, I know. Well I feel it has grown and it bothers me all the time now. It very sore. We are thinking it needs to come out completely rather than just biopsying. We biopsied it about 7 or 8 months ago. However, in the last 2 months it has become worse. It is like a cyst! We rang the gynae specialist and I see her this week. She said we can cut it out and she needs to see what needs to be done. So please pray for that.

The labs for my 4 weekly infusion last time forgot, even though it was written on the form, to do my IgG levels. We found a result from a little while ago on the computer and have gone with that. It is just below normal which is enough to stretch it to 5 weekly for now. So I had another test done yesterday since it had been the 5 weekly interval and we will have the infusion in another 5 weeks from now and check those results to see if we can go 6 weekly. The test has been done with the big lab this time and will surely NOT be missed!

IVIG went well yesterday. I slept in til 12 noon today. I felt exhausted!

Isaac is doing well. He went to school this week. Monday and Tuesday he went for half days. He was still needing guidance with lunch and pain relief. However, Wednesday he went a full day and was a bit tired that night. Thursday and Friday were much better. Big days for him but he did well, the teacher said. They are giving him rewards to eating all his sandwich. He has been given awards for eating the whole of his fruit at 9am during fruist break. I know he has managed 3/4 of his sandwich at lunch and when he manages the whole thing, he will get more rewards. These rewards are helping him feel much more positive about eating and the teacher is so nice. He has a "fill in teacher" for the first 3 weeks as their other teacher had surgery and is away. I am a little nervous. He has been responding so well to this current teacher. The other teacher experienced all those dramas with Isaac at the end of last term and it has made me nervous. She is very nice but what if Isaac acts up again once she is back? Surely we have taken care of the problem now Isaac doesn't haves sleep apnoea anymore?

Oh....Isaac hasn't been cuddling or trying to kiss this other child at school...at all! Yay! He has just not attempted! It seems he has calmed down and I hope it stays this way! I felt so distressed about it all.

Anytime this week or early next week, I will take Isaac for his repeat bloods on his clotting times and CBC and so on. He has colour back in his cheeks so I think his iron has righted itself. However, it will be interesting to find out about his clotting times and so on. I rang mum in Africa and she said my ouma had a problem with this and they had to give her Vitamin K injections before a procedure because she would haemorrage afterwards. They never were able to find out why. So that is interesting and I must tell Isaac's paed about that.

We are selling our other house that we used to live in. We cannot afford to keep it anymore. It is not working out. The market is right for buying here at the moment. I know I mentioned it earlier. Alan and Isaac are out there right now, doing things to get it ready for an open inspection. If all goes well, this house will rid us of all our debt and we will have some left over for investment....we hope. This is what we get when we crunch the numbers. We hope all will go to plan. It has been difficult to let this house go....for me. I LOVE this house and if I could move it to where we are now, I would. It is big and open and has a nice feel. The suburb is just too far away for us anymore. It also has a tree planted in my brother's honour called the "Shannon Tree" out the front. It is SO huge now. Taller than the house! I hope no one cuts it down but I know this may happen if we sell it. There are a lot of memories at this house. Every time I pull up in the driveway, I feel like I am home. I love the neighbours too.

A lot is happening. The last month, Alan and I have sensed that something wasn't quite right with his work. Things have accelerated since then from not quite right to looking for another job, to Alan now having a last day of work. He finishes up on Thursday and he hasn't got another job yet!!!! I know Alan is more calm but I feel panicked! We will be living off my disability pension and Alan's 2 day carer and any extra work I can do with nursing. What makes me feel awful is that because of FA, I can't just go and work full time in my nursing because I get exhausted and then sick! So.......once again, we just have to trust God. That is the story of our life! Haha! Man has proved that they cannot be trusted. They prove it over and over again so trusting in God is the most safest thing. He is the only one who has our BEST interest at heart. I know that Alan having a new job is in our best interest, but I didn't plan on Alan leaving his job and not having another one yet! *sigh* Yet another change.........He has been applying for HEAPS of jobs and nothing yet.

Well, I really should go in the shower. IVIG makes me SO slack. It is 1.30pm. I need to get ready and Alan is coming to pick me up since I don't drive the first 3 days after infusion. It confuses my senses.

Thanks for reading and please pray for all these things.......my bone marrow biopsy, my gynae problem/excision, Isaac's repeat bloods, the selling of our house, my job prospects and Alan getting a new job!

Love you all,
Happy Mother's Day for tomorrow!
Charisse

Good Day with Isaac

Hi All....again....hehe,

Isaac had a good day today. He asked for a snack at morning tea time and so I offered him some things and he chose to have some jatz (cracker biscuits). I thought, "this will be interesting" but still gave them to him. He had two at first. I was doing something and he said he was finished. I was SO surprised! No crying, or gagging as he ate these so we got him another 2 with vegemite on them and he ate them too, clearing his throat a little! I was so excited. He then asked for a piece of bread with butter. So we gave him it and I waited with baited breath for the tears and gagging and spitting. A little clearing of the throat but nothing else happened! Yay! He had eaten without a fuss! I had high hopes for lunch time being a success as well :-)

Lunch time approached and he wanted orange soupe (pumpkin) with teddy noodles. So I heated the soup through since we had it yesterday and cooked the teddy noodles and mixed it all together. He ate quite a bit and then said he was full. That usually means he is getting tired feeding himself and because I want him to have a good lunch I offered to help. He ate almost the whole soup and the noodles. He spat up one noodle and gagged a little. But there were no tears...YAY!!!!!!

He had a biscuit for afternoon tea and didn't have many issues...still no tears.

We went to visit Aunty Angela this afternoon and that was fun. Then we went to the hairdresser for Isaac to have a hair cut. It was well overdue! Isaac never likes having his hair cut and always complains prior to the appointment. He used to scream during his hair cut but since starting school last year, he gets a bit pouty (a word???) and sulks a bit but is always very good. Today I was expecting the same. Well he sat there getting his hair cut and he started screaming! I was so surprised! As the scissors came closer he did this high pitched scream/squeal and burst into fresh tears....crying and crying and then screaming again. I apologised to the hair dresser explaining that he had a traumatic week last week and he must be just traumatised. I then tried to coax Isaac through the haircut which was hard with him crying and screaming at intervals! I was telling him that the hairdresser is not hurting him, just cutting his hair like we always do! But when he saw the scissors out the corner of his eye, he would panic and scream and then cry!

I must say that Isaac must be a bit traumatised from what happened last week post tonsillectomy and his recovery! He must be very sensitive right now which is why he has been struggling to recover from it all. It makes me nervous that in a week I have to take him for another blood test. Just seeing the room and knowing what is going to happen freaks him out before they do anything! I know Isaac is a real sensitive kid but what I witnessed today made me feel sad that he was so traumatised last week. I know that when I was a child...and of course I have FA....I had so much stuff happen and felt out of control and traumatised a lot of the time! Poor Isaac.

After the hair cut the man gave him a nice biscuit for doing a "good job", although I don't think Isaac was "well behaved" compared to how he usually is....but he wasn't deliberately being naughty today......I could see the fear in his eyes....shame my poor baby! I told the man he was so nice giving Isaac a biscuit when Isaac screamed and didn't sit still and stuff. The man was not phased by Isaac's outburst which was good. He is a great hair dresser and is one of the people who does Isaac specifically. He reassured me that Isaac was acting out of fear and trauma of what he had been through last week.

Then Isaac and I headed home. On the way home he asked for some MacDonalds and I thought, "wow, he is feeling better!". Alan and I got him MacDonalds for dinner and Isaac ate 4 of the 6 chicken nuggets and a bit of the chips, the chocolate milkshake and we cooked him up some brocholi which he ate the lot of :-) No tears but there was HEAPS of GROSS gagging!!! Hahahahahahahaha! He told us that God had told him to eat all his tea and not worry about his throat hurting.....so he did. Impressive hey????

Isaac also had only 3 doses of panadol for pain relief today instead of 4 doses! He is now off the tramadol (strong pain relief).

He is still waking distressed at night where he isn't awake and you have to wake him to calm him down. Shame. He still is very pale. However, he may be able to go to school on Monday. We will trial him and if he doesn't cope, he can stay home the next day.

In one week, as I said, we need to have those bloods taken for him to check his CBC (Complete blood count, platelets, haemaglobin), his INR and prothrombin times (clotting times) and whether his marrow is producing the baby red blood cells properly (reticulytes,....test has a longer name). Because he is pale and had the bleed they want to check that these are all ok. Also, he had the abnormal clotting...it was too slow so they want to see if it is like that when he is well and eating more normally. What a joy. I pray that it all goes well.

As for me, stay in tune for my bone marrow biopsy date, my follow up MRI for my head and neck and sinuses and ENT follow up, gynae follow up and may be biopsy of down there again.....and my liver/breast ultrasounds that I am due. I had the dentist about 2 weeks ago. I also have a dermatology appointment to check the normal and see what my head scar is doing.

Thanks for checking in everyone!
Thanks for the support!
Love Charisse

Isaac's Progress

Hello All,

Isaac is getting better slowly. Drinking is now not a problem. Although, you still need to encourage him to have a drink but he can swallow fine.

It is eating that is a difficulty. He can swallow but when he does his ear hurts and his throat hurts and burns he said....it is hot that is what he said. He also thinks every bit of food gets stuck and then becomes distressed and goes off the whole meal. SO I start with the mushy veggies first so he will have those. I have to coax him lots because the paediatrician wants him to have this. There are tears and moaning and all sorts. I then offer him anything else. He likes bread and longs for it so I give it to him after the good stuff but once he swallows his first piece he cries and becomes quite distressed. *sigh* We will get there.

Isaac is very pale in the face. We saw the paediatrician on Tuesday who exclaimed at his paleness the moment we walked in. He checked for low iron by looking at his eyes and his hands but no clinical signs that he is anaemic. However, due to the bleed and his unwellness following the surgery, the paed wants to check somethings. When bloods were taken during the bleed, his clotting time came back too slow and some other tests were abnormal. SO they are doing those again in about a week. It is possible that lack of proper diet contributed to these test results being abnormal. However, in case something is wrong they must check.

Isaac has to have a CBC (complete blood count...platelets hgb etc), he has to have a test that shows if the bone marrow is making baby red blood cells and the clotting time test and INR. Hopefully there will be nothing wrong with the production of these cells in his marrow. If he is anaemic, then they want to put him on iron supplements. They need to find out why he is still pale. SO that will happen in about a week.

We were planning on having Isaac back at school on Monday. I know a lot can happen in 3 days but looking at him now, I am not sure he can go back yet. Things can change for the good quickly in 3 days.

OK, I am REAL tired. I worked in recovery on Wed for 8.5 hours and it was great fun.,

I have a nursing job interview in a week with a day surgery hospital as a casual staff member. I am hoping to have the two jobs,

I am off to bed! Thanks for keepig up!
Love Charisse

Isaac home

Hello All,

Isaac came home at 10am this morning. He has been a bit brighter. However, eating is not something he likes to do. I am not pushing eating at the moment. Drinking is what we need him to do more. I have made strawberry milks, banana/chocolate/ice cream milk shakes, water and offered red cordial and more. It doesn't seem to matter what I offer or set before him, he grizzles and takes these tiny sips! I thought he would gulp down the banana/chocolate milk shake like he usually does and he turned the whole thing away! It is so frustrating.

He drank enough late last night at the hospital because his current IV jelco was inflammed and had to come out. We told him that if he drank enough then he would not need another. We had to really encourage him but he got a whole cup of milk down with our insistence in about an hour. Then he had some water while we played a game and went for a walk. So he was allowed home today. Also, Alan and I wondered if now that he can swallow water and stuff, that he might improve in his own environment at home. We must continue to encourage the drinking. The problem is that Isaac is refusing the stuff he really likes. If I purree things like soup and stuff, he will refuse that and clamp his teeth shut. He doesn't even want any chocolate!

So I just keep encouraging and reminding him that if he doesn't have fluids, then we have to ring the paed and go back to the hospital. Even ice-cream is a fluid. SO he can have a big bowl of ice-cream. Do you think he wanted it? Noooooooooo.........he has had 3 teaspoons of custard (that is also a type of fluid) and wanted no more. It has been really frustrating. How much he wees out will tell me how hydrated he is. So we will continue and it can only get better as his surgical site heals more and more.

What a drama at lunch time with the antibiotics. He didn't want them. Usually he LOVES the taste of the antibiotics. But not when he feels like this. If I put them in something else he just refuses it and we waste it. I learnt that at the hospital. I can disguise something in poo medicine but some things can't be mixed with this medicine. I disguised oxycodone in that the first night and he took it. You see, Isaac has trouble with constipation and he knows if he doesn't take that stuff, he gets real sore. He also likes the taste......so no matter what, he takes his poo medicine quite happily. If only he connected the two dots with his recovery and the medicine he has to have......if only he would realise how this would all help. SO it took 20 mins to get the antibiotic down and he spat the first bit. I actually got a bit cross because I think Isaac needed to have some "firmness" to see that this is not acceptable. He is 6 and you can reason with them a bit., but not much when they are unwell it seems...ahhhhhh.

You see with tonsillectomies, the more they DON'T eat or drink, the worse the pain actually gets. So the pain goes in a cycle............it is annoying.

So I guess I should go and encourage him to take another sip. It has been a long week.

Love Charisse

Isaac Haemorraged but is Stable Now

Hi All,

what dramas! Isaac was discharged after a rough night of crying and being really distressed on Wed night. He did really well from the surgery but woke up at about 2 am very distressed and sore. I had gone home to rest but Alan was there. Because of FA, if I get too many crazy, late nights I sometimes get sick or ulcers and VERY exhausted! I needed to make sure that didn't happen. Alan tells me Isaac was quite distressed and all he wanted was his mummy. I felt bad when he told me but honoured all at once. I just needed rest but wanted to be there for him.

I arrived at the hospital at 10am the next day and Isaac's nanny was there watching him. He was totally exhausted and when I asked them to check his temp it was slightly high at 37.2 degrees C. He was sleepy and didn't want anything to eat or drink and he had struggled with his breakfast. Yet, they still said he could come home. I was a little worried to be honest but took him home. We had to carry him to the car. When we got home he slept and slept and slept. He was due pain relief so I woke him up but he couldn't get it down. He spat it all out and cried and was distressed. So I took his temperature and it had gone to 37.5 degrees C. From being a nurse, I knew I should call right then in case of infection. The doctors were impossible to get! The ENT's were going on leave the next day and I wanted to work this all out. Isaac refused anything via mouth and at one point I spent about 5 mins trying to rouse him with my knuckles on his chest, shouting his name loudly and he wouldn't wake up. I took his temp again and did his observations (typical nurse I know). His temp at risen to 38 degrees real quick and he was tachycardic. I was worried then. Since I was having trouble getting hold of the surgeon we opted to go for Isaac's paediatrician who he has had since being born premie. Bless his heart, he was in a C-section but rang my mobile immediately and told me to bring Isaac to outpatients at the hospital where I work which is closer.

So we took him there at the alloted time and the paed wanted to admit him for a short stay so they could see if he would drink 200 mls to 300 mls in 3 hours. If not, he had to be cannulated again and have a drip and be monitored overnight. They wanted to monitor his temperature and he had now gone 8.5 hours without pain relief or medication to get down his fever! I couldn't get it down him! I felt distressed! So the nurses did a great job and got it down with many tears and Isaac being really sleepy. Yay! His temp came down a couple of hours later. However, he was not doing well with the fluids and the sleepiness. He asked to go to the toilet though which was a good sign that he was not totally dehydrated.

So I took him to the toilet and while he was there, he used his bowels and I saw blood and then Isaac started making choking noises! I looked at him and there was fresh, bright red blood coming out both his nose and his mouth with huge clots! It was down his front, on the toilet and on the floor. I grabbed a paper towel to catch it so they can measure it. I had nothing else. Isaac was distressed and the blood just kept coming and coming! It was scary. I buzzed the nurse while reassuring Isaac, "it is ok. Just some blood. We will stop the blood. You will be ok" while thinking, "oh no, this is a huge amount of blood. I hope he doesn't bleed out". No one seemed to be coming but I could hear voices so I called out. Alan said, "hang on" and I said, "I need you to come here now!".....so he did and then the nurse and well.......then the doctors and nurses acted SO quickly! Isaac was put on the bed, ice on his neck to try and stop the bleeding, ice in his mouth to stop the bleeding........nurses and doctors putting in 2 IV's , one in each arm.....CBC's, group and hold, blood cultures, clotting times....you name it, they did it! Also an ambulance was called straight away to transfer him to our big women's and children's hospital in the city which is where I was diagnosed. The nurses and doctors were great. Explained everything to Isaac and managed to joke with him while giving him great care. I work at that hospital and they treated Alan and I wonderfully!

It was pretty emotional and scary. I was so worried and watching Isaac's face made me want to cry. He was scared and so pale and helpless looking with blood on his face and drips and so on.

We were put in an ambulance once Isaac was stabalised and went to the women's and childrens. Our private ENT met us there and when he looked at Isaac the active bleeding had stopped. They had told us that Isaac may need to go back in for surgery but by this stage they were happy it had stopped and that didn't look like the case anymore.

However, he was started on IV antibiotics and the cultures today confirmed an infection present. Bloods also revealed his clotting times were too slow and they wanted to investigate as to why. Isaac's pain was out of control so they gave him morphine type drug which bombed him out.

He is still in hospital and hopefully coming out tomorrow. He has started to eat a little and drink a little more but not enough to be removed from the drip overnight. He played a little in the play room this afternoon which was his first time out of bed properly. His temperature is now consistently down so the infection is being dealt with. He is still having the IV antibiotics. He is still having heavy pain relief and will be discharged with strong stuff to because we need him to continue to heal and eat and drink at home too.

So tomorrow morning, if he eats all his breakfast and drinks a cup of drink, he can go home. His clotting times came back normal today with his bloods and haematology want us to check that again in 2 weeks. If it is normal then, they will leave it and it was an anomaly. If it is not right again, he must come to haematology outpatients.

Isaac has been very brave and ......so have I ....hehe.

I must go to bed. Thank you for praying for Isaac.
Love Charisse

Isaac is a Trooper!

Hi All,

it is 1015pm. I got home from the hospital not long ago. Alan and Isaac are still there as Isaac is overnight tonight. I came home to make sure I got some good sleep. When I don't sleep well, I feel really tired and nasty ulcers come up. We decided that with our crazy lives right now, me being with Isaac tonight may not have been a good idea. Alan sleeps through anything pretty much so he stayed and I came home to tend to the 2 kitty cats and get some good sleep, only to go back in the morning to the hospital. Isaac should be coming home tomorrow.

The tonsillectomy went well. They also removed his adenoids. The surgeon came in later in the evening and said that there were no complications but that Isaac's tonsils were HUGE and the biggest he had ever seen! He also said that Isaac's adenoids were absolutely huge as well and no wonder he was obstructing! He said that Isaac will be able to sleep and breathe so much easier now. He also said the anaethetist was blown away when he was intubating Isaac. He said that the anaesthetist was pretty impressed by the size of his tonsils.....hehe.....so we definitely did the right thing in having them removed. He should have no problems with sleep apnoea now which means that all those issues he was having should resolve themselves now! Praise the Lord!

It was an interesting day. We got to the hospital at 12pm. Isaac had to fast from 7am and could drink water until 2 hours before the surgery time which was 2pm. So he stopped having stuff at about 11am when we left for the hospital. He was supposed to be 3rd on the list at first but that changed and he was further down the list which took his surgery to about 3.30pm or 4pm. Poor love, he had nothing to eat all that time! Nothing to drink from 11am! His surgery ended up being at 4.30pm! What a long time to wait for a little guy. I am impressed with how Isaac handled it all! We brought colouring in books and pencils. He got a colouring in book from his Aunty, Uncle and cousins for the occasion. We also brought an activity Bible which you read and do certain activities. He enjoyed that. He brought some cars and toys. Of course, he had his snuggly and his soft toys that he sleeps with.....and a new soft toy cat that he named "White" from his Aunty, Uncle and cousins as well :-)

While we waited for surgery, Isaac and I walked around the lovely garden and paths by the hospital. This is a private hospital and quite nice and quaint. We picked berries.....hehe.....but didn't eat them. Just as an activity. The type you are allowed to pick but not many. We explored the hospital. This kept him rather busy but around 3.30pm he started to say he was hungry and wanted something to eat. At 3.50pm I went to the nurses station and asked how long it would be and they said half hour. So I busied Isaac with something else. Alan was there too.

Every time the nurse came to chat, Isaac would get shy and not say much. When the anaesthetist came to visit him, he didn't really want to chat. However, he was so well behaved! We had heaps of chats about how he would go to sleep and that he would wake up with an IV drip and what that was for. Isaac usually freaks out over IV drips and tape.....anything sticky! He freaks! I was really worried! He becomes distressed when talking about it. We talked about the soreness afterwards and what they can do for that. SO he was prepared. His new toy cat talked a lot about it to in the days leading up to the surgery and today when Isaac wanted to talk about it.

Oh yes, the anaesthetist talked about how they usually give children a pre-med to settle them but with the degree of obstruction, there was the risk of Isaac obstructing here in the room and that becoming serious. He said that medication can cause them to obstruct like that. I understood and didn't want Isaac in danger so knew we just had to be gentle with him and understanding and reassuring and it was all fine in the end. I know that they have to do what is best for Isaac and I certainly don't want his breathing compromised before the surgery has even begun! They entertained him so well even though he couldn't have the pre-med.

So at 4.30pm they came in to take him down. I went with him. I felt like I wanted to be the one since Alan was staying the night with him. Isaac rode down on the bed and he said, "I have never been on a ride like this!". It was good to see him smile even though I could tell he was feeling uncertain. He asked questions all the way. When we got to holding bay he said, "what is this room" and I talked about it and what the nurses and doctors wear and so on. He was real quiet until they gave him a balloon and then he brightened up real excited like. That was a relief. I got gowned up and was telling him that mummy wears this stuff when she works as a nurse. So Isaac asked me about that and we talked. The doctor came to speak and smiled heaps and we went into the area where the operating rooms are. Isaac was heaps uncertain when he saw that room......a strange bed and equipement with people gowned up....no face masks yet. I carried him into the room and he asked, "what's this room?" with an uncertain look. I told him it was the operating room and look at all the stuff. I told him all about it and he was real interested. We sat on a chair beside the bed with Isaac on my lap. The anaesthetist was SO nice. I liked him a lot and that is saying a LOT! Haha! He talked to Isaac about everything. He had told Isaac about the mask and we had told Isaac too. So he showed him the mask and got me to have one of Isaac's arm under my arm and the other me hugging him to myself so that I had his arms securely but like a hug instead of holding down. Isaac's head was on my chest and he was relaxed. The anaesthetist told Isaac to breathe the mask and right now he had no colours in it. (the doctor was asking Isaac's favourite colours. For example, red....what does red smell like? Then he would add the smell to the anaesthetic). So Isaac was talking about colours and the doctor said he was now going to add that colour smell to the gas and "can you smell it, Isaac? Do you think that smells like the colour red? How about this smell? Do you think this smells like the colour yellow?" Each time he added a smell the anaesthetic got increased. Isaac was happy to have him hold the mask up which I was surprised but Isaac was distracted by me tickling his arm and hugging him and the conversation of the anaesthetist. Then the doctor said he was going to add the colour blue like on the mask. He asked Isaac if he can smell it and Isaac said in a joking kind of voice, "noooo....hehe....I can't smell blue because it is on the outside of the mask!". He wriggled his hand out and pointed to the colour on the outside and we all told him how clever he was and then within seconds his eyes rolled back and he started to snore. In those moments when you feel your child totally relax and see their eyes roll back and the colour and them twitch, you feel real weird and you see how vulnerable your baby is. So I was trying to hold back the tears. They got me to lift him on the bed with some help. He looked so vulnerable on the bed and the anaesthetist asked me if I wanted to kiss Isaac on the face before leaving and I said yes.....he lifted the mask and I kissed him. Then a nurse showed me out and put her arm around me and asked me if I was ok. They were SO nice and I was REALLY impressed. I mean, when I had my surgery done at this hospital they handled my anxieties SO well. I was VERY impressed! I turned to the anaesthetist before leaving and said, "take care of my baby" and he said he would with a smile. SO sweet.

I started the walk back to the ward and in the elevator I had tears forming and was trying not to bawl my eyes out. I got to Isaac's room and was holding back the tears. I felt silly and I did snap at Alan and am sorry for that. I just felt SO teary about my sweet baby being so vulnerable and needed to do something so I didn't worry about him the whole time. So Alan and I went for dinner. It was 5pm when I got back to Alan. We went over to a cafe in the women's and children's which is across the road and not long after we finished our meal, they called us to tell us Isaac was back! That was quick. SO we hurried back and he was in his room, VERY sleepy but there. He opened his eyes and a few tears. I wanted to hold him so badly but the nurse was busy with him and Alan was on the other side. I wanted to cry when I saw him start to cry a little.

Whoah....the feelings that a mother experiences! It is crazy! Once the nurse moved I wasted NO time sitting next to Isaac and caressing him. He enjoyed a tickle on his arm and his throat was sore. He asked if his tonsils were gone and he had a few tears when I said yes. He had his drip in, bandaged with bright red, rubber bandage. He saw it and we explained but he didn't freak! He was SO brave! He has the drip in all night and he accepted that. He kept it under his covers and said he didn't want to see it. Before I left he was getting used to it and smiling more. He had eaten a full sandwich and had some ice-cream and a chocolate milk. I sure hope he doesn't throw up but he hadn't felt like throwing up. I made sure he was given pain relief only moments after being on the ward and that helped. He hasn't spat any blood up! He hasn't vomited!

The doctor warned us that his voice could get higher in pitch when everything was removed. Well, I already notice it! Isaac isn't nasally anymore and his voice is higher in pitch. The doctor said his voice is now how it should be. He sounds SO cute and clear.

Tomorrow he will have his IV out and he is scared about that. I want to make sure they use something to help the sticky tape off without it hurting because he is petrified and started to wimper over it tonight. He hates tape.....I think from having it when he was so young and premie.....bad experiences with tape and soreness and stickiness.

Oh, something that was cute. He had changed into the cute, little gown they gave him and he was walking around. Two nurses saw him and said how gorgeous he is. They then said to Isaac that he looked so cute in his gown. Alan was standing behind Isaac and Isaac turned around, rolled his eyes and smiled a funny, embarrassed smile as if those nurses are SO ozzy or silly....haha. It was funny.

Another funny. I was asking Isaac whether he remembered the man talking about smelling the colours from the mask and he said, "yep, but those smells were a bit stinky and they are not from anywhere in this world!!!" I laughed out loud and agreed that the gas stinks and that they don't really smell like the colours the doctor was talking about! He acted like the doctor was real silly for thinking those stinky smells were anything like the colours he was talking about! Hehe

So I suppose I should go to bed. I can't wait to be with Isaac tomorrow again. It was a success and I pray that Isaac sleeps well and feels good tomorrow to be able to go home.

Thanks for praying for him.
Love Charisse

Tonsillectomy Confirmed for Tomorrow

Hi All,

took Isaac to see the ENT today and he said Isaac's tonsils are real big and definitely obstructing his breathing. Isaac definitely has sleep apnoea issues. He asked us loads of questions in regards to Isaac. Like, his behaviour, whether he was a restless sleeper, did he wet the bed still at age 6, is his a mouth breather, what is he like when he eats, how well does he grow and put on weight. All of that stuff.

Well Isaac has not put on weight in 6 months which I thought was odd and the doctor also thought was weird. He doesn't grow fast at all. He still wets his pull ups heaps even though we restrict his fluids to no more after 6 to 6.30pm. We also take him for 2 toilet stops during the evening while he is asleep as well as before bed.....and he still wets quite a lot! I always thought that was odd. He has trouble eating with his mouth closed. Also, at school and home I have noticed that he seems "young" for his age and thought it was always because he was premature by 13 weeks which can happen. At school he has trouble focusing and is always needing a sleep or huge rest around lunch time and after. He has been running around like crazy as well.

Guess what??? Sleep apnoea has been linked to excessive bed wetting. The doctor tells me that most children stop wetting once the obstruction is removed....his tonsils and adenoids. We should be able to help him with this bed wetting now. At the moment, because of the sleep apnoea, the adrenal glands are stimulated somehow and then the kidneys and so he wees without any control no matter how many times you take him to the toilet in the middle of the night! I won't go into the chemical reasons as to why the adrenal gland is stimulated or anything like that.

Also, because of the sleep apnoea and working so hard to get oxygen, Isaac sleeps restlessly, not allowing him enough rest and recovery from his day, making him tired and he doesn't concentrate. His cognitive development is affected because his brain isn't getting the time out. So the doctor said he can be delayed and seem "younger" than he is.....didn't I say that we thought Isaac was younger????

Also, the sleep apnoea causes the brain to suppress the growth hormone at night. Children do most of their growing then and so they don't gain weight or grow properly......and Isaac has trouble with his weight.....another connection.

Another thing is because he mouth breathes at night because of obstruction, his jaw has taken on a certain shape, and his teeth have crossed over or something at the back, because of how he holds his mouth. The doctor said this will correct itself once the tonsils are removed and he can breathe.

While eating he can't breathe so he has needed to have his mouth open and i used to feel frustrated that he wouldn't eat with his mouth closed. He hasn't been able to help it because of how big his tonsils are......he will be able to breathe again once they are out!

So Isaac will be sleeping better, less wetting during the night (hopefully none at all), develop properly in growth and cognitively and grow up a bit and be able to concentrate at school and calm down....and have plenty of rest and restoration during his sleep!

He is booked in for tomorrow (Wed) and we have to be at the hospital at 12pm and surgery starts at 2pm. He is about 4th on the list. Youngest child to eldest. I am pleased we are getting this all worked out. Wait til the teacher hears about all this! May be they will stop pestering me about Isaac and things will calm down.

Please pray things go well.
Thanks for checking in!
Love Charisse

Tonsilectomy

Hi All,

well, the paed agreed that the sleep apnoea theory sounds correct. So I took Isaac to the GP and got a referral and we spoke to the ENT office where I go for FA screening and they have someone there who does children. Isaac has an appointment to see him on Tuesday afternoon and they have already booked his surgery to take the tonsils out on Wednesday coming on the 1pm list. Isaac will stay at least one night in hospital. This is big for Isaac as he freaks out over things with hospital. I think memories from being a premie baby. He had to go through a lot and had heaps of tape on his face and as a result is overly terrified of hospital things and bandaides and so on. We have had some good chats though. Isaac said he is nervous and a bit scared but he seems to understand why he has to have a tonsilectomy and that it should make him feel much better. He seems comfortable that nurses like mummy will give him pain medication to help with it hurting. The IV drip is something we are still working through. He is terrified. Tonight it seemed like he might allow it without kicking up a fuss. We will talk more about it though and help him see why he would need it.

So that happened all so fast. I managed to switch my nursing shift from Wed when Isaac's surgery is to Friday. So that is good.

Mum and dad go to Africa for 6 weeks on Tuesday. However, I am not worried as I have good support from Alan and our private nanny and my mother-in-law (other mother). Thanks Guys!

Well, I am going to bed. The paed said that we are hoping this tonsilectomy will solve problems by allowing him to breathe better and get proper rest. If his tiredness continues more tests will be done to find out why as it is unusual that he is so tired with 11 to 12 hour sleep at night. I thought I would also get his eyes checked to see if that could be related to any tiredness and lack of concentration. This will all get worked out.

Thanks for your support! Everyone.....thanks.
Love Charisse

Happy Easter! .......and Update

Happy Easter everyone!

It has been a good weekend. Good Friday was nice. While we were unable to go to the Good Friday Service at church due to me still recovering from infusion and Isaac recovering from gastro, we had a nice, intimate time at home together. We read about Jesus' death and resurrection on the cross and had communion together. It is the first time Isaac has had communion. Isaac asked Jesus into his life about this time last year. He understood what communion was and was so serious while taking it. When he took the bread (biscuit) and the wine (red cordial), he had his eyes closed and he said, "thank you Jesus, thank you Jesus". It was so sweet to see him really involved. It is so sweet to see a child so young with such a true relationship with Jesus. The Bible clearly explains that one must understand what you are doing when taking communion and Isaac really did understand. After doing this and discussing what we were doing....and reading the Bible, we watched the "Jesus" movie for children. Isaac watches the whole thing. We sit and watch to make sure he understands and doesn't see anything that would be too "old" for him. I always cry through any Jesus movies.

Then Friday night I went to the women's Easter rally at our church. We had a woman by the name of Aliki ministering. I was also singing an item and God had given me something to share. It was a really good night and the Spirit of God was most certainly there moving and ministering. Praise the Lord, God helped me through the song and I spoke about the things He had laid on my heart. Aliki's ministry was awesome. I recieved some prayer and then went off home. Saturday we spent at home and Sunday we went to church in the morning to celebrate the ressurection of Jesus. Isaac woke to find Easter eggs in his basket by his bed and he also had a small egg hunt in the lounge room. It was a good day. Nanna came over in the afternoon to give Isaac some more chocolate....hehe....and then we went to mum and dads in the evening for dinner and some fellowship :-) It was good. I was so tired from all the activities......and the fact that I still feel sleepy from infusion, that I slept til 11am this morning.

I am on call at work now for Tuesday, Thursday and Friday. I only work once in a week so I hope I get one shift on either of those days.

Back to the issues that I wrote about last entry with Isaac and school. We had a huge chat to Isaac about the hitting and cuddling issues. The next day which was Tuesday, he went back to school and had to apologise to the 2 kids he had hit, the teacher for not listening and to the child he likes to cuddle but the child doesn't like it. He apologised and Alan asked the teacher why we hadn't heard about all this at the parent/teacher interview the week before. The teacher then told him that Isaac had only hit the last couple of days. That he had been not listening for those two days! She didn't say anything else about the "may have to repeat year 1" issue. She then said that she thinks his issues are directly to do with tiredness. Otherwise, he behaves fine. I don't know if she generally thinks he acts more younger than the others. The cuddling issue is an ongoing one I knew about so we are just reminding Isaac that if someone says, "no" then you stop no matter how much you want to cuddle. So......boundaries. The thing is that we are a very affectionate family and what we do at home, he was doing to this child who is complete opposite. We joke about kissing Isaac and I call him my "beauty" and cuddle heaps and so on. He has to realise that not everyone is like that but I still love being affectionate with my child. I am very concerned about how this child reacts and I am very worried Isaac is being labelled as a bad boy even though hugging is not really bad. I admit, Isaac needs to learn those boundaries and we have been talking about self control....but I am still concerned and I can't express it all here.

I have felt SO anxious about how things have been portrayed to me by the teacher . I honestly don't think Isaac is really bad at all. I feel like I deal with so much in regards with FA that I am worried Isaac will do something "wrong" at school while I am in treatment or something and I cannot help him or explain to the teacher. I kind of feel like school is not safe. I know it is safe. When I say safe, it makes ME and my feelings feel unsafe! Now I am convinced that it has to do with my anxiety and feelings that Isaac is being "attacked". I am aware that I need to deal with this. It is a blessing that the school holidays have now started and that I have 2 weeks of no school. When school starts back I am going to have a meeting with the teacher about my concerns in regards to what happened that last week. I am going to tell her how I feel about things and how I am struggling to cope with these emotions and that I don't feel safe. Weird hey. It seems that when I get really overwhelmed I don't know how to cope with emotions. I want this issue that came up in the last week dealt with and I don't want to be scared to send my son to school because of me being emotionally overloaded. I have no idea if what I have written makes sense. I know this issue is not as big as it was talked about. However, I feel scared. That might be because I have had a lot to deal with the last week and had infusion which can change how I feel.

Today I was thinking about Isaac's tiredness. He has 11 to 12 hours sleep a night and he shouldn't be as exhausted as he is! Today he has been grumpy and upset this afternoon and he still had 11 hours last night. He has had about 11 to 12 hours for 5 or 6 nights in a row now! There has been no school today so he shouldn't be as exhausted. Then I wondered whether he is not having a good, quality sleep in those 11 to 12 hours. I thought about how I had taken Isaac to the doctor on Thursday last week. The school called me to pick him up because he had been throwing up so I took him to the doctor who exclaimed how big his tonsils are and I told him that it is normal.....which it is. It is something we have been watching with the paediatrician. Isaac literally has the space of the tip of your little finger to breathe through when sleeping and doing anything else. They are huge! They have always been huge. We think it is hereditary because Alan was the same. Alan had sleep apnoea - they thought.....so they took them out but only after we were married. The paed had asked me to watch for signs of sleep apnoea with Isaac. I watch him while he sleeps and he snores. Ocassionally I think he misses a breath but then sometimes it seems like he breathes fine. I wonder if he is having trouble and he does have sleep apnoea because of the size and people who have sleep apnoea, often are tired during the day because they don't get the oxygen and have to work harder in their sleep getting less quality sleep. Now I am starting to wonder if his incredible tiredness and silliness and grumpiness is actually phyiscally related to his tonsils, working hard to breathe during his sleep, sleep apnoea and then less quality sleep and he gets tired as if he has had no sleep at all! This could be affecting his performance at school and making him not cope and act weird!!! So....this could be happening. It is a real possibility! I am going to ring Dr Smiley and chat to him. This may be the first time I am seeing his tonsils really affect his quality of life! We might have to wip them out! In fact, I think we will! This is a revelation! This may fix the problems he has been having! I need to get in to see the paed and talk to the teacher about this too......


Now for me. I went and saw my haem/oncol on Wednesday and managed to chat to him about going through the transplant unit to help me deal with those last moments of my brother's death. To help me cope being in a transplant unit again since it has been 15 years. To break the fear that it holds over me. I stuttered and cried and couldn't breathe right but I MANAGED to get it out and talk to him about it. So a pyschologist who deals with haem/ocol/transplant patients is going to call me in the next 2 weeks and make an appointment with me to talk about those last moments with Shannon and for me to take the step and work through all this. I am scared but amazed that I am doing this. This is HUGE for me. Please pray for me as I do this.

Alan is good. Work is a bit slow for him right now in certain areas.

Anyway, so that is what has been going on. I will update you more a little later!
Love Charisse

Year 1 Blues - Do FA children have difficulty?

Well, I had a good sleep last night. I had a good weekend even though I felt flat from infusion. We had kids' club on Friday night which was fun for Isaac but unfortunately it causes bed time to be delayed by about an hour and a half. In stead of Isaac being in bed by 7pm with the lights out, he is in bed by 8.30pm. Not so bad being a Friday night.

However, then on Sat night we had some friends over and Isaac was in bed a lot later. May be in bed by 8.30pm but not asleep until 9pm. Way too late for Isaac and I was thinking about the fact that school was in a day and I needed to have him well rested. Sunday was the usual. I was at home because of infusion reaction and Alan and Isaac went to church. Daylight Savings changed and was over so Isaac woke at 6am instead of 7am. That made him tired and he was quite ratty for Sunday afternoon and evening that I took away his bed time story and had the lights out just before 7pm on Sunday night, feeling concerned about what he would be like at school the next day.

Most of you know that for the first term of school, in year 1 this year, Isaac has struggled with the year 1 work load and by Wednesday he is really tired and kind of shuts off and gets silly and won't listen, glazed eyes and so forth. So for about 5 weeks or 6....something like that, he had Wed afternoon off at home from 12pm. It worked and he perked up, handling school a lot better, doing heaps better with his spelling tests. Last week I noticed him getting tired again and a bit hyperactive at school on Wed. He has done 2 full Wednesdays again to see how he copes. I was a bit concerned at how he would cope with the spelling test on Friday and when I picked him up from school today I found out he hardly tried and only wrote down 3 words out of the 7! I felt concerned.

To be honest, I was a little taken back today when his teacher started to chat with me. She is absolutely lovely and very caring but I couldn't help but feel really down! She started with how Isaac didn't do too well at his spelling test last Friday and I expressed concern about him being tired again. Then she went on to say that he had been hitting kids today and punched a child in the playground. This completely surprised me as Isaac is not a physically violent kid! In fact, he is usually the one being bossed around! The child he supposedly punched was the one who often hits him in the playground and literally, throws him around. We have had to deal with that before so I wonder if that was provoked but I have NO idea! She said he had been really silly all day and not paying attention in class and everything she told him went straight over his head! He has been a bit like this on the weekend and I have put it down to him being tired. I have also felt bad because I had been getting him in bed by 7.30pm all week instead of 7pm and he seemed to be suffering from it....hence my worry! On top of this, Isaac has a good friend whome he really likes and so Isaac likes to cuddle him. Isaac is a REALLY affectionate kid. When he likes someone, he wants to express that affection. Up to now, I have had trouble explaining to him that he cannot do this at school because this child doesn't like it. That generally boys don't like it and he mustn't do it. Well I find out today that this child who is a really good friend doesn't want to be friends with Isaac anymore because Isaac won't leave him alone! I stood there horrified and feeling like I wanted to cry! I felt like I didn't know my own child! So I discussed this issue with the teacher and the hitting and the tiredness and so forth.

We only had parent/teacher interviews on Tuesday last week. I was late and Alan went on his own for the first interview because I was working. I suppose I would have thought that some of this stuff would have been revealed at the interview if it has been an ongoing problem. The teacher started to discuss how she isn't sure if Isaac will be able to go on to year 2 next year. Now I started to feel panic. I know that parents shouldn't panic about that stuff but you don't want your kid to be behind even if an extra year of school helps them to be infront if you know what i mean? She said that they usually make a decision by June if the child has to stay back, depending on their progress half way through term 2. She also said, "so try not to worry about it right now" but how do you NOT worry about it??? She mentioned that not only is he little (I know FA parents would deal a lot with that) but he also seems more immature than the other kids and where he is right now, he couldn't be expected to be in year 2. However, it is just the first term. He has had 10 weeks of being in year 1, how would you know? That is what I say.....although there must be certain milestones that he should have accomplished. Isaac's real good friends are all with him and I don't want him to not move on with them! I also want to continue with them as a mum of year 2! I know, I know.....this is silly. If it is best for Isaac then who am I to argue or be upset......but I DO feel upset and I don't want him to repeat and I am SO upset about his behaviour today because I didn't raise him to act this way *sigh*

I know, in the back of my mind, that Isaac was born 13 weeks early. I know that this could affect his development and cause him to act younger in areas but at the beginning of the year they were telling me how focused he was and how he was a machine and very independant. How come I didn't hear any of this "may need to repeat the year" at the parent/teacher interviews......OR is it just that they are thinking that after a really bad day today! *sigh* Alan said it may be a knee jerk reaction from today or may be they have been watching and waiting to say something but were not planning to at the parent/teacher interview.

I feel bad that I didn't have him in bed real early on the weekend. I have come to realise how important bed time is to a school child. He must have his lights off at 7pm. Tonight it was 6.30pm. So I did well tonight. Both Alan and I spoke sternly to him about the consequences of hitting at school....what would happen at school as a consequence and at home. We spoke to him about the cuddling issue and how serious that is and how no one will want to be his friend if he ends up being the "naughty kid" who hits and does things kids don't like. We spoke to him about the "not listening" and that if that continued he would be in the office at school. Some of you may think I am harsh, but kids don't seem to stop unless they KNOW what the consequence is and how serious it is! So in devotions tonight Isaac prayed to Jesus, first saying sorry for not listening, cuddling and hitting (whoah, what opposites). He then asked for forgiveness and asked Jesus to help him not do it again. He missed out on sweets after dinner tonight due to not listening and for Isaac that is devastating. Isaac also knows that every day we will be asking his teacher how he behaved and if he listened and so forth.

I hate disciplining but it comes with parenthood just like the cuddling and kissing and reassuring. I just wish I never had to do it. However, if they misbehave, you have to carry through the discipline otherwise they will never take you seriously.

Tomorrow morning at school will be full of apologies. Alan and Isaac will go to the friend who he cuddles and stuff and Isaac will say sorry to him in front of his mum, then the teacher and the other 2 children he hit today. One must face up to things when one has done wrong and correct it quickly. *sigh* Believe me, Isaac really is a sweet kid..........

May be I feel so down because of infusion as well.

I needed to let out all my feelings on this topic. I feel like it is my fault that he is struggling with tiredness and acting like this. I need to be more diligent to get him in to bed and lights out at 7pm and sometimes I just don't. I am learning how important an early bed time is for school children. Not that Isaac ever stayed up super late. Just seems like there is no room for error with school *sigh*

I am interested to know how children with FA cope at school. Parents, do your children need a strict bed time? Do they get SO tired that they get ratty? Do they have to repeat much? Are they more immature at school than the others?

Thanks for reading and commenting. It means a lot! I hope I am doing an ok job at parenting amongst everything else!
Love Charisse

Our New House!

Hello Everyone,
Boy some of these photos are shocking. Trying to get a shot of Isaac in his school uniform is impossible. He is constantly moving, the lighting isn't good and our camera is sometimes just not that good! Also, these photos are kind of out of order but I don't have more time to fix all that right now. This will have to do. This photo here is of Isaac in his full school uniform and in real life...he looks gorgeous but you cannot really tell in these photos! Grr...oh well. Will try another time. This is inside our current house.


This is Isaac in his sport's uniform...once again really hard to get a shot of him and he was insisting on wearing his grey socks and black school shoes instead of his sport's socks and sneakers...but he is cute.

This is him again, but in real life, he was protesting to us bringing the camera out at all!

Ok, what are we doing here? It is night time, hence the blackness and bad photo. See the 3 chairs......Isaac lined them up and we are in a movie produced by him. That is me and my mother. It was really funny. Isaac was doing all the music and singing and he was performing it to the right of us so we had to turn our heads....rather than performing in front of us..but this is how it was done. Below, at the very bottom is a video Alan took of the whole DVD performance. You can hear me laughing...very interesting. Feel free to watch it for fun. It is hard to see much because it is night time but you can see some of it...and hear him constantly singing and talking! hehe....click on it twice...at the bottom.

Ahhhh...yes...now this is our new house. Once again a little out of order. This is a picture of part of the back yard. We are on a hill so our back yard looks out over the hill and goes down these steps to another section where there is a shed and lots of bushes.

This is the front of our new house.

This is what the porch looks like behind all those bushes and down the hill!!!

Now, I have got some bone marrow biopsy results...the first lot of results. I don't really want to share until I have the second lab back, only because then everything is more accurate. We have a smaller lab do the test more quickly and then the transplant lab gives me my results as well. Usually the smaller lab get confused between some FA cells and blast cells and the IMVS lab is more accurate in determining all these cells we can have in our marrow when we have FA. So...before I share with everyone, I always wait for the other lab results as well. The cytogenetics or chromosome results will be back in about 4 weeks. Our lab here is quite backed up and so if the cytogenetics take a little longer than that...it is not surprising...but at least the other results come back within a week...the transplant lab...only because it is backed up...may take another week to give me those other results.

Now, the video below. It is quite cute. You may have to click on it twice to make it work. Enjoy it!

We have been busy packing for our move in a couple of weeks. I am a little overwhelmed but it will get there.

I have a routine MRI coming up on the 29th April...and looking into the throat issue of feeling a lump in my throat...it is gone now..and the pain...but it happens in a cycle and I want to know why!!!

Well, I really should get some packing done before Isaac comes home from school. I am lazy today. I didn't sleep too well last night and so I slept in real late. I was planning on getting up early and going swimming...but another reason had to stop me from swimming....but then I could not even get up this morning until real late!

Tomorrow is my IVIG infusion...please continue to pray that I have no bad reactions. Constantly procedures to have done!

Enjoy the video below!!!


Isaac's DVD Production!

Lots of love,

Charisse

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

Isaac

Hi All,
update on Isaac and his teeth. So he went to the dentist today..the paed....and he was so good. He let the guy look in his mouth and count his teeth and even have an x-ray without any complaint...I am so proud of him. The tooth he chipped only a couple of weeks ago has stripped the enamal off his tooth and is making the spongy part of the tooth vulnerable and so the tips of the nerves can be there and make him uncomfortable. He has been saying that the milk is too cold for him and all. So they want to build up that tooth to take the chip away and make it look normal again and put a protective layering around it as well. He also is slightly tongue tied so they are gonna snip it and cortisise it (sp?)...this will all be done under General Anasthetic and take about 45 mins at the most. They will let us hold him while he goes to sleep to make him feel more comfortable...which is good. It will be nice to have all this fixed! Isaac did well today and we are proud of him.
So that is my small update. Remember if you want to know what exciting new things are going on with us as a family and my latest surgery coming up refer to the other entry!
Love ya all,
Charisse

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

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

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