Well yesterday I weighed Jason at the pharmacy - we have hit 12kgs!!! I am SO SO excited, I really wanted him to get to 12kgs before we got to Graz and he totally suprized me by getting there 2 months earlier. The more weight he has the better because he is going to lose about 10% of his body weight in Graz. Some of the kids lost more. I am hoping that he won't go below 10kgs while we are there.
We now have all 3 passports and the birth certificate, so now we are in the process of gathering all the other info that is required for the VISAS. I will hopefully be able to do our VISAS around the 12th August.
On the bad news, we had another mic-key rupture on Tuesday. Bruce was playing with Jason in the morning and noticed the hole in his tummy with no mic-key. Thank goodness it happened before school and also not during the night otherwise the stoma hole would have been closed. Hopefully, holding thumbs that this will be the LAST mic-key we will need to get before Austria. Two months to go and his mic-keys last a month, so maybe 2 more?
Eating wise, not too much action lately. Just the odd nibbles here and there. He is keen to taste things. The other night I made cottage pie and left him with the pots and bowls. He stuck his finer in the mash and put that in his mouth then I showed him the gravy to taste and he stuck his finger in that and tasted that. He knows what to do but just doesn't have the courage to eat.
Development wise we have seen lots of progress. He is starting to copy us with things we do now. I will run on the spot or do star jumps and he will laugh like crazy and copy me too. Very cute!! Still claps every time a rugby or soccer match comes on - he gets SO excited - world cup memories. We are also noticing a few more words. Bye, thank you, hello and I am sure I heard a mommy yesterday!
It's great to be working 5 mornings a week and Jason LOVES schoo
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Sorry I haven't updated in a while, just been busy, busy, busy.
Things are going well, Jason is doing really well, no gagging and I can see a HUGE difference in his weight gain. I haven't weighed him, but he finally has a little boep!! We are back to school and work full weeks now - yippee! Spend our mornings working and at school and afternoons have our bonding time together. Suddenly it seems Jason has taken off. He has started copying lots of things we do like blowing kisses and actions, talking (in his language) on the telephone and just very lively and talkative. I am sure we are going to get some words soon. At Pick 'n Pay today he waved and said hello to everyone in Pick 'n Pay! Our final fundraiser is coming up on the 30th July 2010. We are having a 4 course dinner at Bistro Bar, Ballito - see Fundraising events. Thanks SO much to everyone who has helped out. Hannes and Erica from Bistro Bar for hosting the event. Colin for doing the invitations, meal vouchers and raffle tickets. Lee-anne my cuz for arranging the lovely prizes. Bruce my cuz for arranging the signed Sharks Jersey and hamper. Also a big thank you to the sponsors that sponsored the prizes. Jtjie is getting better, the antibiotics are working and he had a much better day today. We even managed to finally get out the house after being indoors for 4 days - cabin fever of note!!
Tomorrow we go down to Palm Beach to visit granny and grandpa - we all can't wait to see them, last saw them at Easter and long overdue. Oh Bruce and I chuckled at Jason so much tonight, he was in his element watching the soccer game and cheering on Ghana. I have never seen him so vocal and clapping so much. I got some sneaky videos on my cell but not sure how clear they will be. I say sneaky videos because goodness if he sees the camera or cell phone, he wants it to watch videos of himself. Jason had a few chips today, didn't swallow, spat out and also some dried wors but he almost chocked on it and was highly disgusted by the taste or feel in his mouth and on his tongue. He kept trying to lick me to get it off. LOL shame. Definitely doesn't get that from me. I love biltong and dry wors. Well after trying for a week to prevent the runny nose from developing into anything else, we had to go to the doctor.
I took him to physio yesterday morning but his lungs were clear. Both the physio and I listened and they were very clear. So I carried on dosing him with his usual meds, olbas on the pillow, vicks on the chest, nebbing and my own physio to be safe. This morning, Jason woke up coughing and when I listened to his chest, both his lungs were wheezy. He sounds terrible!! The doc examined him, said I was doing everything right, with the right meds etc., but his lungs are wheezy and he does need an antibiotic. What a lovely man our doc is, he always spends so much time with us, talks to Jason, gave him a sucker and took time out of his busy schedule to put a frog tattoo on Jason's hand!! So sweet!! So R200.00 at the doc and R600.00 at the pharmacy, hopefully this will sort our little man out. Luckily I managed to go to work in the afternoon because daddy is sick too. Today I couldn't go and I doubt tomorrow too?? Hopefully he will be nice and better to go and see granny and grandpa down the South Coast this weekend!! Oh dear, our little man is sick again. This cold front didn't help either. He started with a runny nose last week Monday. I was hoping it wouldn't turn but it has, gone to the chest now. This morning Jason woke up coughing and as white as a sheet, very pale. I took his temperature and it was 38.3. I gave him a suppository and checked later and it went up to 39.4 - my stress levels.
I have phoned the physio and made an appointment for tomorrow. Physio does wonders to lift phlegm off the chest when they don't cough enough. I have dosed him with all his vitamins, rubbed his chest with vicks and tucked him in. Hope my little man is better tomorrow :( The professor from Austria asked us if we could send her a video of Jason. I don't know exactly what she is looking for but I managed to get a beauty today, one of him eating a chip. He has only started putting things in his mouth the past 3 weeks and only O'gradys chips and tuk biscuits. Tried flings and all the soft chips but my little man is not stupid, he knows what he wants.
To view the video go to http://picasaweb.google.com/lh/photo/VICts5I_Vb6vKcWo9a0OiQ?feat=directlink Well in 3 months time we start the Graz tube weaning program. I have mixed emotions about it. In one way I can't wait to get there and start and the other I know how hard it is going to be on Bruce, myself and most importantly Jason.
Not going to be easy watching Jason starve but this is the ONLY WAY that Jason will start eating again. At least we will be in the right place with all the medical care and experts in this field. I have been following Joanne's blog. They are in Graz at the moment on day 5 today and boy it has been hard. Understandably though and I know we are going to have a really hard time as well. We just have to take it one day at a time and put complete faith in God because he will be with us every step of the way. He hasn't left our side the past 3 years and he will help us through and continue this journey with us. It's very overwhelming seeing how many people are following our journey. I am so touched that you ALL are a part of this journey. Our journey started at the end of March when we made the decision that we had to go to Austria to help Jason and boy what a long way we have come already. I can't believe how the funds have grown so quickly, thank you everyone. Not only financially but also emotionally and spiritually. I have met so many WONDERFUL people that have become really good friends to our family. We are truly blessed to have you in our lives. Remember if you are on facebook, our facebook page is called Jason's journey to eat again. http://www.facebook.com/home.php#!/group.php?gid=104739252900081. I will also update on our group when we are in Graz. Not too much news to report from this side. Jason is doing really well on the new formula. It's expensive but it WORKS. We don't have gagging and vomiting and less frequent stools too. So at least we know he is keeping some food in.
Waiting on the stool test for the malabsorption to check if that is still a worry or not. Unfortunately we had another mic-key rupture today. I checked on Wednesday night and there was 5mls in the balloon and this morning the tube had no water in and was almost out. Luckily we found out before school. This one was put in on the 7th May so lasted over the 30 day guarantee period. Thankfully Jason's schools have a holiday club so we have managed school and work quite a bit which is wonderful for both of us. Today he made daddy a card and a stone with a face on for father's day. Too precious. Yesterday all his drawings came home in his folder and wow am I a proud mommy!! 12 and a half weeks to go before we leave for Graz. EEK it is getting closer!! Please keep the comments coming, we love to hear from you. Things are starting to feel so much easier with no gagging and vomiting. It is so much easier to get out the house without everything but the kitchen sink. Going on outings like to the beach are so much easier for us as a family without the gagging and vomiting.
Jason is looking a lot more healthier and his weight is starting to climb again. On Monday he was 11.10kgs and hopefully climbing. If we can get to Graz with him over 12kgs that would be fantastic. The formula is going very well, from 6 - 7 poos a day down to 2 - 3 poos is fantastic. Jason has been showing more interest in food like chips and biscuits. He will feed himself, chew and then doesn't know what to do after that. The professor from Austria said that we must NOT try and take the food out, he needs to learn that he must either swallow or spit it out. We need to accept that Jason's mouth is his "private zone". Stubborn little man though because he can sit with food in his mouth for like 2 hours. Been really trying with his sippy cup as well. He will at least allow the straw in his mouth now. I tilt it and he gets some water in his mouth. I can't wait for him to accidentally suck on the straw and then he will eventually get it. We had a lovely relaxing family weekend and went to the beach today, what a STUNNING day. Jason had an absolute ball playing in the rock pools with his net and watching the aeroplanes and helicopters flying above him. He is a real water baby. 3 years old today. We can't believe how time has flown. Our little man has come such a long way, been through so much in his life but he continues to take everything thrown at him with a pinch of salt. He really is a good example to all of us.
He had such a lovely birthday, his teacher made him a crown that he wore at school and we took cake and they sang happy birthday to him. He didn't eat cake, hopefully next year but he did have some chips. He has taken a liking to o'gradys chips. He sees the packet and comes racing over to have some. Takes them all by himself and feeds himself but once they are in his mouth and chewed he doesn't know what to do with them. He looks like a chipmunk holding them in his mouth, and dare you try and take them out of that mouth!! Last week he bit my finger so mommy has gotten wiser, I won't stick my finger in his mouth again. Ouch!! All the birthday wishes were very overwhelming today, I cannot believe how much love we get from so many people. Thanks to everyone for their wishes. The funds have grown this week, we received a very nice donation from someone that did not leave a name, only a reference "In God we trust". SO very true and if you are reading this, thank you, thank you, thank you, your generosity was very overwhelming for us today!! And you are so right, in God we do trust and boy has God been with us the past 3 years and continues to carry us through!! |
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