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Hi all,
Today Aine had her 4th stem cell treatment and this was cord which is white in colour not yellow. After this treament we found that aine was very calm and relaxed so we were waiting for the storm which usually comes not long after treatment. The day went off well and later that night we met with the other parents for a chat and a laugh. The following day an amazing thing happened, Aine was doing great things in OT, she was walking the steps and handing the ball to tom and then to matt, this doesnt happen that easily but this was a day that she was so attentive that even tom was amazed. The next day she was very tired and all she wanted to do was sleep but as the day went on she improved. Time was strating to go quicker now as we were use to the way of china and it was relaxing. The staff were so helpfull and the people in the area that we came across wer so honest and trusting, they wouldnt even take a tip!.Well that is all to report until the next treatment.
all the best for now
caroline, matt and our patient ainexxxx
August 11th, 2009
Hi all,
Just catching up on the paperwork otherwise i will fall behind. Today we had stem cell three done by IV and Aine started a little cranky but settled down. After this IV we found that Aine was constantly banging on her ears, shouting and very agressive biting on things. This side of Aine we hadnt seen in a while and figured she had a pain and seeing that she couldnt tell us its harder to deal with but i figure it was in her head. Later that day she fell asleep for a short while and her left hand started to shake slightly. Generally if this happens ita a sign of a mini seizure so we asked tony her doctor to take a look at her and between us we would keep watch if she started to seizure but by morning after a good night sleep so was ok. What i have noticed is that after each stem cell aine got very moody and extremely hungry, we just couldnt feed her as she was eating double for the next day. The next day Aine was still off form and tom her therapist suggested doing acupuncture to relieve her headache and it did thank god. She was very vocal all day and her form really picked up. On friday she woke up with a rash on her face, we thought from dribbling but now i think its from the shower, the drain of the shower, well i dont know when it was cleaned last so bacterial is a problem and everything needs to be scrubbed . In the kitchen we have said to the translators that their is no hot water and its impossible to kill bacterial or was delf in cold water, hopefully this will be adressed soon. We cook alot because of Aines diet its not easy to get food to work with her and somedays it can be hectic in the kitchen when everyone is in at the same time. There are only two rings to serve all on the ward to cook, ive asked that this be dealt with as children with special needs have to be dealt with first as i know with my little girl she wont wait when it comes to food. They could do with another two rings in the kitchen area and more space to cook.
Today is saturday and we are on a day off so we went down town to the walking market and found mcdonalds, just like home with good beef and god were their burgers good. Handbags were a great buy here and real leather and even good quality leather shoes. Sam was a great help and a very patient man considering men hate shopping! Aine was in great form and i think the area is called li linn walking street. While down town i got ds lite games for my son conor and they were a bargin, he will be thrilled with this as we got 30 games for alost fifteen euro and at home its 40 euro upwards a game.
Sunday the weather wasnt great so we didnt go out till later in the afternoon and headed to lotto mart across the road. Then it was a quite night in with the dvd as aine stem cell treatment tomorrow.
So many lovely people we have met here and we are all like one big happy family, the results for some are amazing and to see someone come in to the ward in a wheel chair and go out on a hand stick walking well, that says it all. We have had some good nights telling stories and swapping jokes etc and we made many friends in the same boat, here to help their sibblings or a family member. One gentleman who came here with his daughter, i know he wont mind me mentioning his name but Don you are an inspiration to all to come here with your daughter ella alone and dedicated your time to helping bring the best possible help to help your daughter, take a bow Don! Ok i wont embarris you any more. Have to sign off now, as time to give Aine her snack before bed. We follow the next update shortly.
all the best for now
caroline, matt and our little patient aine.
July 30th, 2009
Today Aine had her second stem cell treatment at 4pm china time. Everything went well and we had no reactions which was a good sign. Now we wait and watch that the temperature doesnt rise or the stemcell treatment doesnt trigger any seizures. To date everything has ran smoothly and we feel that at this stage aine has changed, she is very relaxed and calm and feel that her temperment is better. We will keep you posted and up to date on her progress.
Places to visit and see - We have taken on RT mart several times and alot of european food can be found there, to shop in china is quite cheap particulaly in food and clothes but the clothes are not to the standard and quality that we are use to in Ireland but then what do you expect for small money. We visited the temple and hired sam the driver for the day and michael the translator came with us, the temple was amazing and so peaceful that you would nearly sign yourself in for a while just for the relaxation . They offer fruit to their god buddah and the statues of their god in gold and its surroundings is unbelieveable. You light insence sticks to worship the gods and say your little prayer and leave an offering, definately worth a visit. After here we traveled to the seafront or the harbour as we know it where the olympics were for swimming in 2008, along the walkway traders sold shels and perls from the sea. Time for lunch so off to a nice little restraunt recommended by michael, the food was like home and very reasonable and this kept us going until we got back to the hospital. After lunch, time for shopping so off we went and viewed the sights on the way. we returned at 6pm exhausted as the weather was so hot that even the ice cream was melting. Picked up silk chinese PJs for my little girls back home and a beautiful quilt for next to nothing for aine`s bed so that was it for the day. Aine settled down to bed at 7.30pm exhausted but we all had an enjoyable day and now its time for a chat with the others over drinks while the kids slept. Signing off now and will be back on with the next update.
caroline, matt and our little patient Aine.
July 30th, 2009
Sorry took so long updating on aine`s treatment but im back now. Doctors came around this morning to check on everything before we started first stem cell treatment. Her doctor is Dr Tony and he has little english but one the translators go around with the doctors so you can ask anything you need to know with their help. Her temperature was checked and all normal, then her iv connection was put in her foot as her veins are so small this was the best option. She didnt mind this being done so then at 4.30pm china time we went to the 9th floor for the first sct which aine was great with and just relaxed. From bed time a close check was kept on aine for any side effects to the treatment but thank god no problems. First treatment over and we were more nervous than aine not knowing if she was going to trigger a seizure.
Oh! Aine `s history, well Aine was diagnosed at three months with Epilipsy following a course of antibotics which didnt cure her virus and thus triggered seizures. She was diagnosed at three and a half years with Autism after a long battle with the HSE who didnt pick up on this and said she had development delays.
In november 2008 we brought Aine to Baton Rouge to a DAN doctor who understood autism and its connections and we did bio medical treatment. Four months before travelling we put Aine on a special diet as i discovered she had leaky gut syndrom and she is still on this today and has helped her so much. What I would say to anyone travelling out to china is if your child is on a special diet make sure to bring enough food with you as they know nothing about dietry food out here and its impossible to buy.
Day one of the stem cell treatment is over and Aine followed with OT and Acupuncture in the next few days leading up to stem cell 2 treatment. She loved the acupuncture and just laughed when the needles were put in her head and arms but this was amazing and helped her in case of seizures and headaches.
Well thats the first over and i will follow with the next treatment soon, so time for shut eye now as we have another treatment tomorrow so big day ahead. Will keep you all posted and updated.
Caroline, Matt and our little Patient Aine
July 26th, 2009
Hi all,
Arrived safely in qingdao on friday morning after leaving home in ireland on wed afternoon. We stopped over in seoul on thursday night in the hyatt hotel which is a five star hotel, we were glad to see our beds that night. Aine has been great on the trip here as its hard for any normal child to take on such a long journey but even harder for a child like aine with epilipsy and autism. We were met at the airport by Michael the translator from the company and taken to our destination where we were tospend at least five weeks. The peoples hospital in Qingdao wasnt to far from the airport so that was good for us all. What a culture shock! i will never complain about home again but isnt it true that you would do anything for your child, travel the ends of the earth! The staff greeted us and helped us settle in and adjust to the new surroundings. Michael had great english and took us on a tour of the hospital and then we were taken to lotto mart to buy in groceries especially for aine as she is on a special diet so everything has to be cooked from scratch. I will fill you in later on her diet etc. I will be honest it takes a while to settle in as even with time difference china is seven hours ahead of us in ireland so to turn your sleep pattern around is hard. The people here are so friendly and cannot do enough to help you and the staff are amazing, always there checking on your needs. I will sign off now and check in later on how things are going in qingdao and aines progress.
bye for now
caroline, matt and of course our little patient Aine xxxx
July 21st, 2009
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