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