1.01.07 - 28.7.07 -- Cai takes a trip to London !!
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Monday 23rd Apr 2007 - Picture this week courtesy of the professional magazine photographer.
Cai is doing fine, he still has some gunk in his lungs, and we are inhaling with medicines to help his breathing, but he is off teh oxygen and beeps less during the night (apart from saturday when we have no nursing support and he beeped constantly throughout the night).
so nothing major to report this week, have fun and enjoy the weather.
Thursday 19th Apr 2007 - Here is Cai's article from last week in a national swiss magazine. The title is "the boy who can't cry".
There were a few inaccuracies in the article, it has been sensationalised and Kerstin Photoshopped but it has reached over a million readers in switzerland - who are at least aware of charge, it's a shame though that they wouldn't mention the walk "charge across Europe".
We won't be doing any more such articles for a while due to Cai becoming ill after this one.
English translation of article should be available next week.
Monday 16th Apr 2007 - Cai is back home again, and gets to know his eldest brother Michael a bit better.
We cut short our walking holiday in apenzell and collected Cai on the Friday as we think the nurses were getting a bit fed up of hi ;-)
It is nice to have him back home, he is more work than normal at the moment due to the extra inhalations we must do, but he is breathing much easier and full once again of energy.
For us the holiday was nice, it was a shame Cai wasn't with us, but the break did us all good and we are one again ready to face the challenges life continues to throw at us.
One of the larger swiss magazines (1.5 million circulation) did an article on us, I will scan it in this week and add it later this week so you can see it once it is no longer on sale.
Monday 16th Apr 2007 - "If you go down to the woods today, you are sure of a big surprise 'cos todays the day Cai sleeps away while we all have a picknick" - think you can do better - feel free to try :-)
Monday 16th Apr 2007 - Michael gets to meet his little brother again after quite a while, its just a shame it was in hospital.
Michael has flown in for the weeks family hliday, which was supposed to include Cai but typically he gets sick , come to think of it Cai was also in hospital last time we went to apenzell, unfortunately this time the hospital got to witness how bad his breathing was as well as us and the ambulance crew.
Easter Sunday 8th Apr 2007 - Cai seems to be much better, he still needs to inhale every three hours but he seems much better in himself and lively again.
We have to wear the white gowns because they dont know if he has an enfectious infection, we don't think so but just in case we don't want to put the other patients at risk.
Cai's eldest brother Michael is over for a visit and we are now going on our holiday, hopefully we can collect Cai later on in the week, but the doctors have said it won't be before Tuesday.
There will be no updates until next weekend unless something major happens, take care have fun and enjoy the bank holidays.
Thursday 5th Apr 07 - After not much change yesterday, Cai is doing much better today, he just needed the minimum of oxygen during the night and his breathing is sounding much better - not so wheezy. These little ones can really be a worry sometimes.
Tuesday 3rd Apr 07 - I have just come back from visiting Cai, he is not fully back to normal but is also not fully dependant on oxygen. Kerstin spent a lot of time inhaling and suctioning him this morning and it seems to have paid dividends (helped), he managed the three hours before she left without oxygen, whilst I was there it was only used when we inhaled nacl and ventolin, so fingers crossed that he is on the way to a full recovery.
Monday 2nd Apr 07 - I think the photo says it all, taken today at 11:30 am, an empty bed and an ambulance - Cai is back in hospital.
Cai had a very restless night and although his breathing improved for a while whilst he slept in the morning he was really struggling when awake, I thought he would need oxygen for the journey (which he did) so he had to travel by ambulance.
He is stable now, but they are having to inhale with ventolin every couple of hours, I also syringed some old blood out of his stomach so maybe he has an infection somewhere.
Sunday 1st April 2007 - no this isn't an april fool Cai was admitted to hospital again, it was only for one night however and he is back home now.
At what price comes fame! - On Friday night we had an interview with a national magazine, they took lots of photos (trying to emulate me I suppose ;-) and kerstin thought it was quite stressfull. All was fine at the time, but later that evening Cai started getting Wheezy and producing a lot of secretions, the night nurse hardly had any time to sit down.
Saturday morning Kerstin went down to take over from spitex and then Cai woke up, I was awakened by kerstin shouting for help, Cai was very wheezy but seems to settle when being held, we tried bathing him, inhaling with ventolin, but he was just so restless and wheezy. We phoned the local hospital to see what we should do and they suggested we bring him to them and they would decide whether he needs hospitialising.
The doctor could hear he was having trouble breathing out so it was decided to inhale again with ventolin (twice) and then send him to zurich, but first we had to watch them fail to put a drip in his wrist and then arm until finally they were successful with his head, all I can say is they wouldn't have been selected for my darts team.
of course by the time I arrived in zurich (kerstin went with him in the ambulance) he was fine, he needed oxygen in the night but was relaxed again. we went home and too tired to make the most of our "free" night we went to bed and slept until late (it may sound harsh but you have to make the most of these times!), saturday had been a very long and stressfull day.
We arrived today to visit Cai and after discussions with the doctors it was decided he could come home again - we will continue with the ventolin until he is better.
What caused it is up for debate, possibly the stress from the magazine interview and all the photos, maybe the bananas he had for the first time friday - all we know is that we are glad he is better.
I thought to myself as they were trying to put the drip in that I would gladly suffer that pain for him, but swapping places with him would be a much harder decision to make!!.
We are hoping to go on our first holiday with him next week, fingers crossed that all remains well.
Sunday 1st Apr 07 - Cai gets another lift in an ambulance.
Sunday 1st Apr 07 - Cai is looking much better.
Sunday 1st April 07 - Yesterday the AZBaden newspaper supplement published the second article in the series, this one is about the walk or rather Charge across Europe
Friday 30th Apr 07 - Cai gets to photographed by a pro for a big magazine.
Thursday 29th Mar 2007 - Cai gets his fifteen minutes of fame!
this was in yesterdays local paper - maybe I will try and translate into English when I have time.
Monday 26th Mar 2007 - Look dad one finger. Cai tries out his thomas the Tank Pyjamas from his grandmother Nanan in Wales - It was only a couple of months ago that I commented how much to big they are for him and already they fit him !!
Cai can now walk with the aid of an adult or older brother, he has some balance problems but he seems to be getting better and finds just sitting boring. He doesn't like coming down stairs yet but I suppose that is quite scary.
Kerstin has had us all busy with preparations for her playgroup for special children like Cai, where parents in a similar position to us can bring thier children along, she called it Kunterbunt (which means multicoloured) The alternative playgroup. So if you are in the Baden area and know of someone who might want to come send us an email for a leaflet.
Cai meanwhile is doing fine, We are testing some premanufactured baby foods for when we on holiday (healthy, preservative free of course), he doesn't seem to mind them so far.
We are also waiting for his first newspaper article to be published.
Monday 26th March 2007 - I have had enough Cai says - I am running away from home.
I think it was the stairs that pushed him over the top, so Cai packs his toys and makes a run for it.
Monday 26th Mar 2007 - Cai is back in time for his next meal we put him behind bars for a while to stop further attempts of escape. He found running away from home more tiring than he thought it would be and decides a nap is needed.
Monday 19th Mar 2007 - We take Cai for the first BBQ of the year. It was very very windy but the food tasted good.
Cai is doing fine, we took him to see a house undergoing refurbishment and were worried about the concrete dust, but Cai seems to be okay.
Apart from that all seems to be going well, and mood is high especially after Wales's performance on saturday.
Sat 17th Mar 2007 - Cai gets in the mood for the big Rugby game to come.
Well done Wales, you restored some pride and played some brilliant rugby, roll on world cup. Hmmm Ok and well done France!
Friday 16th Mar 2007 - Once again we arrive at a function early to make sure we have room for Cai, nothing to do with the fact we want the first piece of the pie.
Nick (see pond digging page) hosts a steak and mushroom pie party, Cai slept through the whole thing, but food was excellent courtesy of Tak. Shame we had to leave early to be back in time for spitex (night nurse)
Monday 12th March 2006 - we arrive early to make sure we find a place :-)
Cai wanted to see what the charity soup day event at one of the local schools was like. We arrived early to avoid the rush and 5 minutes after this photo the nearby church service finished and the place was full. The soup and two pieces of cake I ate tasted really good, especially as I was eating them for a childrens charity.
Cai is doing fine, he has been crying from time to time for no apparent reason but sometimes grabbing his ears so we think it may be earache or his teeth. He slept well though so fingers crossed that whatever it is bothering him goes away soon.
Yesterday a local reporter came to meet him, he is writing an article on Ruan and Tina who are doing the walk across europe and also wants to do an article on charge syndrome itself.
We have also started the planning for our "expedition" a three week summer holiday in the UK mostly visiting family and friends but also a week by the sea in llandudno. We are hoping to pursuade one of the night nurses (spitex) that they really need a week in sunny wales.
Monday 5th March 2007 - Cai crosses on the old wooden bridge in luzern.
My elder sister Kerry and her Husband Pete came to visit, unfortunately they wer ill most of the time, but we did manage a trip to luzern which was fun trying to park a 2m high landrover when most of the car parks were underground and 1.9m only.
Cai seems to be okay, Saturday night saw Kerstin doing the night shift and Cai was very restless and his pulse reached 170 and he was very hot Kerstin feared he had a fever, but she removed his clothes to cool him and he settled and when I measured his temperature in the morning it was normal. He has been ok since so fingers crossed that it stays that way.
I would like to mention that it was my Uncle Midge's 80 birthday yesterday, Congratulations !! - the card is in the post (I think ;-) )
Monday 5th March 2007 - out enjoying the views with his uncle and Aunt - This visit was the first time they had met Cai.
Monday 5th March 2007 - Cai, Oliver, Kerstin and Sabine (Kerstin's sister) play at rowing boats, Olivers idea!.
Monday 26th Feb 2007 - Cai gets to try rice carrot and fennel food.
Kerstin continues to make some "normal" food for Cai, she has to keep a close eye on the calorie content as the milk he gets is high calorie so we need to supplement the normal food mix but he seems to be taking okay to the various normal foods he is getting. It seems to be working because when we weighed him Sunday he is nearly 10 kilos now.
Cai has a busy day today, this morning he is at the hospital so kerstin can learn how to change the mickey button that he is fed through and this afternoon he is at the oesteopath who is helping with his neck.
We changed cai's canula last week. we videoed it for reference and this time we had the camera in a better postion, all went smoothly (we waited until he was almost asleep) so maybe we have a future youtube candidate :-)
Time is really flying at the moment, it doesn't seem a week since the carnival.
Monday 19th Feb 2006 - Play spot Kerstin and Cai - The winner will be the one to most accurately guesses where cai's dummy is.
Its Fasnacht time here in switzerland, a week with lots of partying late nights, hangovers and music. This is a quiet part in Baden the rest of the streets were jam packed. We walked the 7km into baden yesterday, Cai slept all the way and even when we got to Baden he slept through all the noise - Wish I could have done that last wednesday night when it was Fasnacht party night at the restaurant next to our house.
Cai is doing well, his cold seems to have dissapeared for the time being, mind you jason and oliver are back at school this week so who knows what new diseases they will bring home with them.
Kerstin continues to give Cai proper food, at the moment he is having a carrot rice and potato supplement for his lunch yummy! and we have just started him with apple added to his tea time milk feed. Only smallish amounts, but he seems to be tolerating them well at the moment.
Sundays is cai's bathday, this sunday Cai was playing with the bubbles and then with his hand which was covered with bubbles rubbed his eye, nothing unusual except that he didn't close his eye at all, so I think maybe we will have to get some protective goggles made up, because if a fly etc was to go into his eyes he wouldn't blink!.
On Tuesday last week Ruan and Tina came to our house to discuss the goals of the ChargeAcrossEurope project, where they plan to walk with their dog Akela over 7000kms of mainland Europe from nothernmost Norway to southernmost Greece to raise awareness of the charge syndrome - more details to come later.
Monday 19th Feb 2007 - Cai sits and plays - yes I said sits!
Cai is starting to sit much better, he is still way behind other children his age but as long as he makes progress we are happy, parents always say their children grow up to fast anyway.
Monday 19th Feb 2007 - Cai sits where Kerstin, oliver and jason once sat, now he can join us at the table when we go to his grandparents for lunch.
Monday 19th Feb 2007 - No comment except I wonder what Cai is thnking and I just liked this photo and wanted to share it.
Monday 12th Feb 2007 - Look everyone no hands.
We continue to be pleased by Cai's progress, His sitting gets much better and he can stand with a bit of help. Things are getting back to normal after Kerstin's sudden illness last week and thanks to antibiotics she lives to care for Cai again. It sounds melodramatic when I say Kerstin would not have survived 50 years ago but it really is true.
Cai continues to grow and is now about 9.4 Kilos and 75cm tall. He is keeping everyone awake during the night by his continuous beeping (oxygen levels) so we will speak to the hospital and see if we can get a sleep study done or what else they recommend.
I wish you all a good week shame about the welsh rugby performance Happy Birthday today to my MUM and don't forget your loved ones on valentines day.
Monday 5th Feb 2007 - It's Cai's turn to visit his mum in hospital.
Due to a chain of events which would make a good film, while I was in the UK for a couple of days to visit my eldest son and hospitalized father, kerstin herself got taken into hospital (Friday) with an infection in her face - It is so bad that I had to look twice to recognise her and Cai didn't recognise her at all. She really looked like she had been in a boxing match - good job I was out of the country with witnesses ;-).
Baden hospital refused to look after Cai in the neonatel unit due to lack of equipment and training and so now if you add into the mix the fact that I couldn't get an earlier flight and then my return flight was cancelled due to fog, it gets very interesting.
It took a while for my Fairy Godmother to wake up but eventually she did and I managed to get to another airport in time for a flight to Zurich (just as foggy and only 9 passengers), making it back just in time to take over from spitex (home nurses) who were marvellous in covering until I got back.
Anyway, Kerstin is improving, It is thought that a small cut on her nose caused it, however due to the fact it is near the Brain, the risk of it spreading and possible thrombosis is high and she is on an antibiotic drip and anti coagullent injections. The swelling has started to go down but it is unlikely she will be home until wednesday and then she will need to rest. On the plus side it amazing to think 50 years ago, Kerstin would probably not have survived (not an exaggeration), yet these days we take our health so much for granted.
Cai however is doing fine he missed his mother Saturday morning but seems to be ok now his dad's back around, he has a slight cold and I think he will be better when his mothers back looking after him.
Monday 29th Jan 2007 - Cai gets kitted out to go sledging, judging from the look e is giving us we are not sure how keen he is on the idea.
We have been quite a sick household since our guests left last weekend (Kerstin says I am always ill after we have visitors) . Jason was first to be ill followed be Kerstin myself and Cai. Fortunately Cai seemed to suffer the least with me getting it the worst. Things are getting back to normal, we are continuing with adding the carrot and potato mix to his midday milk and he did break the 9 kilo mark last week, but he was back to 8.8 this week. I think it is a problem with our weighing scales rather than Cai.
We thought Cai looked like the kids we saw last year in the sumo suits in his ski outfit.
Monday 29th Jan 2007 - Cai preferred to stay in his warm cosy pram than go sledging, that's his mother, Jason and Oliver in the background having a race on the sledges.
Monday 29th Jan 2007 - Cai of the antartic!
Cai is still fast asleep when we get him home and into the house after the sledging, but I think he kinda looks kool in his gear.
Monday 22nd January 2007 - Cai comes out to say goodbye to his latest visitors from the UK.
Cai is doing quite well, he has a cold at the moment and a bit of blood is coming out of the canula indicating that he probably has a bit of an infection. We will keep an eye on this, but hopefully he won't need to go back into hospital.
This morning I thought he was reacting quicker when I said things to him, so maybe his hearing is getting better - just a feeling but thats better than nothing ;-).
We are continuing with his carrot feeds but now he gets potato added in as well, we haven't noticed any problems yet with his first tastes of normal food but we are only giving him very small amounts.
We had nursing suport for saturday night so we managed to get out for a drink or two with our weekend guests saturday night, it was really nice to let our hair down although I glad I don't have to go out and "enjoy" myself every night anymore.
Monday 15th Jan 2007 - What a cutie!
We have been continuing with feeding Cai carrots and now we are trying to make sure he sits with us at meal times, so he sees how eating should be done, although the other boys don't always set the best example. It was quite funny when I told Oliver to eat properly on sunday, which when he did eat properly Cai started clapping.
We are pleased with the progress Cai is making, Cai had a checkup with the heart doctor last week and he found his blood pressure was a little too high so he put him back on the inderal medication (after the hospital stopped just stopped it on the last visit) He said he though that Cai wouldn't need further heart surgery.
Monday 15th Jan 2007 - Cai is sitting much better every day and now we bring him to the table when we eat, in the bottle lid is apple juice that he can splash about and maybe put on his fingers to taste (if he can taste that is).
Monday 15th Jan 2007 - Cai thinks to himself, "stupid parents, the juice is supposed to be the cup not the lid so I can throw it on the floor and spill it everywhere".
Monday 15th Jan 2007 - Cai has a smashing time, moments later the unsuspecting mashed potato was stuck on the wall to Cai's left. This is good as it is normal behaviour for babies, The reason we are doing this is that it will help him learn to eat should he ever be able to eat normally through his mouth.
Monday 8th Jan 2007 - Cai thinks he should have been "king for the day".
Kerstin finds the King in the cake and becomes queen for the day.
We have had a couple of instances of Cai turning blue, the first was last Thursday when we changed the cannula, the new one was bigger and longer. with the new one in Cai couldn't breathe and turned a very dark blue, fortunately we were prepared and had oxygen etc to had, we removed the new one and replaced the old one and after some oxygen he was okay again.
The second incident is because when he cries (you don't hear him as such) he sometimes forgets to breathe and I had just twisted him around in his bed to change his nappy which he didn't like and then started crying and putting new meaning to the term "feeling blue" or maybe that is where it comes from, anyway a few shakes and some oxygen and he was back breathing again.
So all in all an exciting start to the new year, We wish you all the best for your New Years and may you have the strength to face up to any challenges it brings and the time to enjoy the lighter moments.
Monday 8th Jan 2007 - Cai gets his first dose of real food, purified carrots yummy!.
We tried Cai with 5ml of carrots with his midday feed on Saturday. At 6pm he cried a lot and we couldn't settle him, we are not sure if this is due to the carrots, teeth or if he has a cold coming. We will try the carrots again on Monday (today)
January 1st 2007 - Cai quietly sleeps as he slips into the next year