Hi Everyone,
Christmas is over us all now and had alot of snow since christmas eve, today we have 4ins so we will be in for a while. Aine was out in the snow and was fasinated for a while then she started to feel the cold and kept calling Mom so i knew it was time to come in. Up to christmas eve she was down with a headcold and a viral throat infection which triggered a slight seizure. Nothing to panic about as she bounced back and it didnt effect her appitite. Since our last post Aine knows what she wants and she is so active on her feet and so much stronger overall. One of the days i got delayed collecting her from school and when i went into her class she was crying her little heart out, her teacher never seen her so upset and she kept saying MOM MOM. She had her back to me when i entered the class and i called her name and she instantly turned around and smiled saying mom. This might seem a small thing to most parents but to the parent of an autistic child its huge. Generally in school she is so much more focused and does her work at ease and her concentration so much better. Over the christmas holidays some of her food i felt left her a little hyper so ive had to eliminate them from the diet and change the diet slightly which seems to be better so far and her bowel movement is so much better than before. I found her watching horse racing the other day with her day and i was stunned to see her reaction.
Christmas morning was amazing as she came down with the other kids and the sense of amazement on her little face when she saw all the toys from santa. She stood with her little sister Grace who is 1.5ys old in front of the toys staring at them while their sister Roisin 7yrs and Conor 10yrs were hyper with excitement with what they got. We put this all on video and watched her check out one of her toys Mr. Tickles which brought great sense of delight and fun . This was the first christmas that Aine reacted to and made it a great pleasure for us as a family after all we had been through over the last three years since loosing her sister in a trafic accident, Today i watched her as she just lay across the couch watching tv with one of her new toys in her hand, her baby sister took the toy from her to check it out herself and aine reacted the took it back from her and said bold baby. We feel that the stem cells are still working and she does have up and down days like any normal child but we have no regrets, she has changed for the better and we hope we will see more improvements. Aine has a long way to go but i do believe she will get there with a little help and stem cells did work for her, they didnt cure her but we knew that going out to china that this was not a cure but if they help bring a child or adult on from where they are, is that not progress in itself and proof that they do help.
Ok i will keep you all posted on further up dates and to all our friends that we met in china that are keeping in touch we say hello. To ella in colorado , well done you are an amazing kid and doing so well , keep up the good work and thank you to stem cells. We will update the blog again soon after we do all the tests we have before us and her appointments with her doctors in the coming months with her gut problems.
Bye for now,
Caroline, matt and Aine xxxx
January 7th, 2010
Hi all,
This has been a hard week for us all here as my daughter Aoife who was killed tradgically was 3yrs gone on 5/11/09 so it ha taken alot out of us. Aine had two seizures on 27th Oct , tuesday night and gave us a bit of a scare. She had to go to hospital but all is ok and she has bounced back as if nothing ever happened. We are not too worried on this as we knew this could happen with stem cells dooing their work. Since then she is in great form, her concentration is good and she is calm and quiet and very happy. In hospital they said there was so sign of infections, viruses etc and all was clear so i knew it was stem cells. Anyone considering stem cells please dont be alarmed by this as i do believe you have to go back to go forward. We will keep you all posted on updates but today she is happy playing with her toys and that is what counts. This is the first time she has had a seizure that it hasnt set her back so that is a plus. She has an appointment with her osteopath this week so see what he thinks of her and work from there. Her neurologist and paeditrician were in contact on thur night after working hours so im glad to have them on board. Will be back to keep you up to date soon. Bye for now.
caroline , matt and Aine xxxx
November 7th, 2009
Hi all,
Sorry took so long to let you know what is happening with aine but its been busy getting everyone back on track.
Since returning home Aines sense of awareness is amazing and improving all the time, she now sees things that she never saw before and takes down boxes in school and opens them etc. Her teachers have seen a huge change and she is very settled. She is now aware that she has wet or soiled and the girls in school started to toilet train aine in the last week and she has used the toilet with help. I never thought we would see this and this is one step closeer. When we give out to the baby for shouting or doing wrong aine starts to laugh and says bold baby alot in school. She is so relaxed and happy and you would never know she was in the house at times. Her attention span is better and now watches tv. Overall I have to say we have a new aine and we are pleased so far with the results.
This was a child that would have been hyper and hard to manage but now she is a pleaseure, between diet and stem cells she is a stronger child and holds her carriage much better. She is over 1 year antiobiotic free which is a record as prior to this she had medication once a month for 1.5yrs and was constantly down with a cold or sick.
We had re done her tests since china and she is things are going wellso we have alot to be thankfully for since china. Dr tony has been keeping in contact and is anxious to take her off her epilipsy medication with we hope to start next week as this is holding her back a little. Aine has still along way to go but anyone who has doubts on stem cells, well all you have to do is look at clips of aine before and after and see for yourself. Its not a miracle cure but it has helped so many people in the world with so many problems so how do you explain this, seeing is believing.
Ok will post next week when i visit her neurologist and see if he notes the change. will be back in touch to up date.
caroline , matt and Aine xxxx
October 21st, 2009
Hi all,
We arrived back on irish soil late on thur night after a long journey but not sorry that we made the trip. At the end of our experience in china we appreciated what we had when we returned and enjoyed the experience of the chinese culture. To all the staff who looked after aine i say thank you for your time and dedication and wish you all well in the future. John, Hawkim and Matt it was a pleasure to meet you all and i hope some of my tips will help in helping other parents and childrens stay an enjoyable visit to your country. Thank you all for the opportunity to help our daughter improve her life and for the experience of your culture. Go raibh maith agat! Love to all left behind, we will not forget you.
Best of luck for the future
caroline, matt and our little patient aine xxx
August 11th, 2009
Ok everyone , on the count down!
After aines doctors visit from tony this morning she got her las IV in which was difficult to find a vein as they had all been use up in her feet at this stage. Aine was in bad form today and she was very upset and agressive and eventually fell asleep when it was time for stem cell treatment as the stem cell delivery was late arriving. The nurse agreed to do aine last and it could be done in her room as she would get very upset if we woke her up, so we did. Everything started well and then i noticed that her ankle was starting to swell up so i asked the nurse to stop which she did, the iv had come our of her foot and the water that flushes through the iv first had inflamed her ankle but i didnt panic as i knew this had happened another patient and their was no harm done. In fairness its hard to keep a child still with an iv in their foot so this can happen, the iv was then put in her hand and we had no problems and the last stem cell treatment went through with no further problems, aine went back to sleep and all was well. Her little ankle went down quickly and the nurse checked her every couple of hours so all was well and no harm done. The nurses were so good with the kids and they always made them feel comfortable around them and had fun with them so they are to be commended fot their attention . Time now to pack for home and our last acupuncture is tomorrow morning and then its off to the mountains with michael the translator to see the sights. This was a great day and then we went for a buffet in a hotel near by to round the day off. Wednesday we didnt do much except say our good byes to al the lovely people that we had met on our travels and collected emails to keep in contact with all our new friends. Well time for be now as an early start in the morning for the airport. Sad to leave all behind but looking forward to seeing everyone again soon and having a reunion with all our new friends next year, who knows if all goes well we migh even go back to china again!
Bye for now and love to all in china and beike.
caroline , matt and our daughter Aine xxxx
August 11th, 2009
Hi everyone ,
Getting near the end now! Stem cell treatment no 5. This was another cord (white) and all went well but she was in a happy form today and hyper. She was more playfull today and started to pay more attention to the tv when it was on so her concentration was improving. We have mte so many amazing people on our travel to china and we will hold them as very dear friends in the future. We are all here for one thing and that is to improve our sibblings or partners lives and this we are all united on and believe that this will happen. Despite medical doctors in our countries they must understand that life is presious and that you will do and go anywhere for our kids. We felt this so much as we had lost a child in a horific traffic accident two years earlier and our little angel has given us the strength to fight for Aine for a better life. We will always hold close to our hearts our precious little angel and deal with the pain in time but she will never be forgotton as always be loved. Aine has an special guardian angel over her and we believe with the help of stem cells that we will get our little girl back to as close as normal as we can. Stem cells are the way forward and we need to show people there is help out there and never to give up on the ones that we love. Aine now plays alot more and is a very happy child and we hope that when she returns home that she will continue to get better. The next day we found that aine was very hungry which seems to be a pattern for her after treatments so this was another day of cooking on the double. Today we went down town to Jimo market and did our last minute bits of shopping before we packed for home. We now miss our other kids and look forward to having a family reunion when we return. After shopping we went to Pizza Hut and enjoyed a lovely meal and aine came with her own food so we could relax over a glass of wine. The day is over now and time for bed with aine and tomorrow another day in the life of stem cells.
night all.
caroline, matt and our little patinet aine xx
August 11th, 2009
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
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