August 2008

Alex is home now after his operation with both legs in plaster from the knee down! The operation went well and hopefully Alex will be able to walk a little better in a couple of months when the casts are off and he has had some physio. For now he is using a walking frame to get about on and he is very pleased with himself! The fact that Joseph wants to use the frame as well probably helps! We will take and publish a couple of photo's of Alex shortly.

August 2008

Just to let everyone now that Alex now has a date for the operation on his ankles. This is due to take place on the 20th August. The operation is to lenghten the achilles tendon in both ankles, this should help him be able to put both feet flat on the floor which should make him less prone to falling over!

Both legs will be in a cast for 6 weeks which will be in interesting!

We will provide an update when he's had the operation and is back home.

July 2008

Alex and Joseph have just come back from a trip to Euro Disney! They had a great time and explored lots of new rides and experiences. The weather was kind and we had lots of sunshine. We stayed in the resort itself which meant we didn't have as far to get to the park each day and just as importantly, not to far to get back in the evening. As well as going to the park, the boys also went swimming a number of times and it was great to see them having fun in the pool, both of them were eager to go down the waterslide and end with a big splash in the pool.

We travelled on the Eurostar which was Joseph's first trip on a big train! We spent 5 days in Euro Disney and have published a new photo album in the usual spot!

Alex has been well aprat from the old sore throat and cold and has certainly kept his appetite! We are still toilet training although we do still get the the odd accident when he is focused on something else!

April 2008

Alex went to GOSH today to have his heart reviewed by Dr Rees the consultant who first operated on Alex. Overall he was pleased with Alex and the results of todays tests and we now don't have to have a further heart check for about 12 months. Alex will still need more operations in the future on his heart, however its good news to get 12 months clear. Joseph came with us today and wanted to have the same tests as Alex! The staff and Dr Rees played along with his request and he had some cold jelly on his tummy for the ECHO machine, his heart listened to by Dr Rees and his blood pressure taken by Daddy!

Toilet training is still ongoing with Alex, he now knows what to do, however he sometimes gets distracted by whatever he is doing at the time, we will need to keep going on this one! Spring is just around the corner so hopefully the boys can spend more time outside and enjoy playing in the garden together.

Alex's next appointment is on the 21st April at GOSH where he will see Professor Moore about his eye, we are not expecting too much to come from this appointment, just some further measurements and observations. After that he is off to Carshalton in May to have his foot reviewed. Its likely that he will need an operation to help him walk better as he currently tip toes everywhere!

February 2008

Alex continues to do well at School and really lloks forward to getting on the bus in the morning, he tells us that he is off to see his friends although we hope that he is learning something as well! He has had a succession of colds recently and has been to the doctor to get a check up, all seems ok but we need to keep a close watch on him. Alex will be off to GOSH in April for his heart check up and then again during the same month to review his eye.

The boys play really well together and its great to see them running round the garden and enjoying each others company even if they fight over the same toys sometimes! Joseph is growing up fast and is proving to be quite athletic with his running and climbing!

Some of you may have noticed that the number of visitors to the site had dramatically increased recently, this is because Channel 4 screened a programme about a another boy with Cystic Fibrosis and called it "aboycalledAlex" of course many people entered this straight into Google and found our site. Unfortunately many of these visitors thought that our Alex was the one featured in the programme despite the obvious age difference so we had lots of messages in our Guestbook which we have now deleted. Still, many more people have now read our website and this can only be good for GOSH and the other organisations that have helped Alex achieve what he has so far.

November 2007

Alex and Joseph enjoyed the rest of the summer (what we had!) and have also enjoyed playing in the garden during the autumn. The scooters have become one of their favourite toys and we have uploaded afew photos into the Autumn 2007 album so that you can have a look.

Alex has been reasonably well for the last couple of months, although he is constantly telling everyone that he has a sore throat or a cold! He hasn't, but he does find this funny! His toilet training is starting to improve both at home and at school, we still have frequent lapses, but he is getting better. Alex's speech is continuing to develop in terms of its complexity although we do sometimes struggle to understand what he is saying! He is working on his speech and this is really important going forward if he is to make himself understood to people outside of his family and school.

Both Alex and Joseph are still going horse riding, its an activity they enjoy doing together and they are both learning a little bit about animals and get to feed the horses a carrot at the end of the ride!

It will soon be Christmas and we would like to wish all of our family, friends and supporters a Happy Christmas and Best Wishes for 2008!

August 2007

We have just come back from our holiday in Dorset where both Alex and Joseph had a great time. The weather was kind and we were able to get out and about on most days. We created a new photo album and hope that you like the photos!

The change of routine didn't particularly help Alex with his toilet training and he has somewhat regressed. This is not surprising really and just shows that this is going to be a challenge!

Joseph is doing well and its great to see him getting on so well with Alex. They play together and are always looking for each other when they are at a play centre, farm etc. Joseph had his first pony ride whilst on holiday and really seemed to enjoy the experience, therefore we have decided that he can join Alex when he goes on a Saturday morning.

July 2007

Well we thought in May that the summer was on the way, how wrong could we be! Alex has progressed well over the last few weeks in a number of areas. He is beginning to concentrate better on what he is being asked to do which is always helpful and in addition has started his toilet training. So far this has been quite successful and Alex enjoys being praised when he remembers to use the toilet. He is also now putting himself on it which is great. We had to get a special toilet seat for him and he has really taken to it. The school are also helping and between us we hope to continue making progress over the coming months.

Joseph continues to grow up fast and is into EVERYTHING! you can't take your eyes off for more than a few seconds as he tries to take apart, move or pick up whatever is nearest. Sometimes this includes the cat and his brother Alex!

Alex breaks up from School soon for the summer holidays. We will be taking the boys down to Dorset to stay in a cottage. Hopefully the weather will be good and we can get lots of great pictures to post here.

May 2007

The summer is nearly here! the afore mentioned trampoline is up and the boys have had their first go! Alex had a good trip to GOSH, his Echo was reasonable as were his other measurements for BP, BPM, Pulses etc. His right side has a stronger pulse than the left, which is to be expected, however as long as we keep a careful eye on him, he shouldn't have to go back for another 12 months.

They also had a look at his left eye and determined that his not really using it! as a result there is little point in trying to lift the eyelid at this stage. Therefore we will continue to monitor it ourselves and report back again next year.

Alex is continuing to do well at school, often coming home with a good work stamp! His concentration is getting a little better and we have noticed an improvement in his confidence when climbing, running etc.

Hopefully the weather will be kind to us and the boys can have a great summer!

April 2007

Well Easter is nearly upon us and the evenings are starting to get a little warmer. Alex has had a good couple of months, his dribbling has settled down post the operation and is definately better than it was before the operation. His speech is also improving and this could well be related, he is now trying to say quite complex sentances, however he doesn't quite yet have the full vocal skills that he needs to accomplish this! We can normally work out what he is saying though by using other clues e.g. what he's holding or pointing at.

Alex is back off to GOSH over Easter for a check up on his heart and a visit to ENT. Hopefully both will go well and we won't get any surprises! We will post an update when we get back.

Last week Alex completed a sponsored walk at school. He completed 5 laps which is equal to a couple of miles. This is a great achievement for Alex and he raised over £175 for the school. We have put a couple of photos in the Spring 2007 Album.

His little brother Joseph is proving quite a handful, his brain is well ahead of what he can physically achieve leading to much frustration and temper tantrums! However, Joseph and Alex do play well together and we hope to see them really enjoy the summer. We have bought a trampoline for them which will go up in the garden over the next few weeks, it has a surround safety net and steps to reach the entrance so they should have great fun with it for years to come. Think that its going to be fun to put up though.................it's in about 100 pieces and the instructions have been translated into english from chinese!

Janaury 2007

Firstly, we hope that everybody had a good Xmas and New Year. The boys had a great time with all their grand parents and everyone needed a good rest afterwards!

Alex has been back to GOSH for his checkup following his op in November. So far the results look encouraging, his dribbling has definately improved, although he has just started teething again so this does confuse matters a little! Importantly there does not appear to be any swelling around Alex's saliva glands and tubes which is good news and means that the risk of infection is low.

Alex continues to do well and school and recently took part in the school Xmas play. He is very confident at school and is clearly very comfortable with all of his teachers and friends. This reaaffirms that we made the right decision to move a couple of years ago to get Alex a place at Brooklands. Please visit their website via the links on the left to see what they get up to!

November 2006

Alex has now had has op and is recovering at home, we should know over the next few weeks whether or not it has been successful. However, in the interim Alex is eating well and is getting back to his normal self!

Whilst at GOSH we were not sure that the operation would happen. Alex had an ECHO taken of his heart in the morning and everyone seemed a little concerned with the results, however after much consultation it was agreed that the operation could proceed. Alex also gets a couple of weeks of school and is enjoying being home with his little brother Joseph!

Joseph has just had his 2nd Birthday which he celebrated with a party at home. Will post some more pictures soon.

October 2006

Just to let you know that Alex has a date for his operation in Great Ormond Street. Alex will be having the operation on Monday 6th November to move his saliva glands and will be in hospital for a few days. Whilst this is quite a big op, we are very pleased that the date has finally come through and that if all goes well Alex will dribble far less and hopefully his speech will also improve.

We will post another update once the operation has taken place.

August 2006

The boys had a great holiday in the Isle of Wight (IOW) and had great fun on the beach, in the parks and various other exciting places! Alex in particular seemed to understand the concept of being on holiday which is a first for him and he was very excited. Both boys enjoyed the ferry ride over and staying in the old country cottage. The cottage had in fact been hit by lightening the previous week which made it a little more interesting! We have put all the holiday photos in the IOW album.

We did finally get hold of some melatonin to help Alex sleep and have so far only had to use it once and it worked! hopefully we won't have to use it very often but its nice to have a natural remedy rather then giving him perscription drugs. We are still waiting to hear from GOSH re the operation on his saliva glands, in the meantime the patches that we use do help to some extent.

Joseph is making progress and is starting to talk, his vocabularly consists of: Mum, Dad, Car, Sorry, Ball, Wow (normally when seeing a car!) Shoes and Yes! He has started to sleep better as well and we must give some of the credit to the cranial oesteopath who treated Joseph.

June 2006

Alex has been quite well over the last few weeks and his sleeping has improved, however we are still going to try and get some melatonin just to help him relax and night when he needs it. He is enjoying the summer and loves playing in the garden with his brother Joseph!

We have been back up to GOSH and they have now agreed to operate on his saliva glands, in summary they will move them from the front of his mouth (normal position) to the back near his tonsils, this should help his dribbling which is proving hard to control. We are now waiting for a date which we hope will be this year.

We go on holiday during August to the Isle of Wight and we are sure that the boys will have a great time, we are travelling over on the ferry which will be a new experience for both of them. In the meantime we have posted some new pictures in the Alex & Joseph - Summer 2006 Album.

Have a good summer!

May 2006

Alex continues to enjoy school and his recent statement review with his teacher confirms that he is making progress in terms of his communication skills and ability to concentrate on what he is being asked to do! Alex has just been to GOSH for a check up on his heart, their view is that the repair is holding and his pulse / blood pressure readings are ok for Alex. Whilst we were at GOSH we talked to them about the fact that Alex sometime finds it difficult to get to sleep. His little body seems to twitch and jerk involuntarily which keeps him awake. It looks as if this part of his condition and is based on neurological rather than cardiac factors. We would like to give him melatonin which is a natural substance and is used in Horlicks to see if that helps him. We will progress this through the various Dr's etc who need to be involved. Alex not being able to sleep also means that he sometimes wakes up Joseph next door! In the last few weeks, Alex, Jospeh and Karen have all had chicken pox! Alex dealt with it really well and was very brave.

Joseph has just started at Nursery and is now walking! He is very proud and now wants to walk everywhere! His sleep is still somewhat erratic and Karen has been taking him to a sleep clinic to see if they can help, in addition Karen took Joseph to see a oesteopath who identified some tension in Joseph's neck and head. Since having the treatment, Joseph has been a little better, although it's hard to be definitive as he now has a cold!

Alex is back at GOSH in early June to have another look at his saliva glands which really need to be re-positioned to help with his dribbling.

Alex and Jospeh do play well together so hopefully they can have a good summer!

March 2006

Alex is doing really well at school and comes home with stars for good work on a regular basis. He is also starting to be a little bit naughty, this is a good sign in terms of his development but takes some getting used to!

Health wise Alex is currently ok, he has settled down after the operation and definately has more energy than he had before the op. Hopefully we will be able to get him back out on his cycle this summer!

Joseph is full of mischief and is proving to be a bit of a handful, he has a very strong will and gets very upset when things don't go his way! Karen is looking at various nurseries for him where he could spend one morning a week, we think that this will be good for his development as well as giving his Mum a bit of a break!

January 2006

We visited GOSH this week as Alex had appointments for his left eye and a check up on his heart following the operation in October last year.

It was a particularly long day for Alex, a total of 17 minutes of actual appointment time with the consultants which was good, mixed with 8hrs & 50mins of waiting which was not so good!

In respect of the eye, Alex will be given a new perscription for glasses which we may or may not be able to get him to wear, he can have the operation to lift his left eyelid, however the consultant Professor Moore has advised waiting if we can as this will increase the chances of success.

Alex had 10 minute ECHO of his heart and this showed that the stents that were put in place during October had remained in place. The pulse measurements in his legs had also improved. Whilst this is not an exact science the consultant Dr Rees, is of the view he should be ok for another 12 months at which point we will need to review the options.

Alex is still talking all the time and tends to provide commentary is his own little way on what is happening around him! He still enjoys horse riding and has settled back down into School following the Christmas Break.

Joseph is growing up fast, he is also babbling away and actually makes short little speeches to the cats or anyone else within range. He is also cruising between furniture and we think that he will be walking within the next couple of months.

December 2005

Alex is making some progress since the operation, he has more energy now and is starting to enjoy his food again. He still talks all the time to anyone who will listen and is increasing his vocabularly. His horse riding is also going well and this is one of his favourite activities.

Joseph is growing fast and into everything that he shouldn't be!!! He is not that interested in toys and would rather play with wires, the video, shoes and anything else that comes to hand! He can confidently climb the stairs on his own (though you still need to stand behind him).

He was crying earlier this week and Alex decided (without prompting from anyone) to go and get him a ball to play with. As soon as he had given the ball to Joseph he stopped crying. This was a special moment and shows that Alex has really accepted his little brother.

October 2005 No. 5

Alex has still had trouble sleeping, he appears to having some sort of 'fit' although he is still lucid and able to talk, his body shudders from head to toe and he finds it hard to relax when its time to go to sleep. He saw the doctor last week and they phoned GOSH straight away, thus our visit today.

We saw Dr Rees who is the primary caridac surgeon at GOSH, they took another Echo (Video) of Alex's heart for about 10 minutes. The results of this look encouraging, the stents that were put in during the operation are in place and for Alex his heart looks ok! In terms of his 'fits' these might be related to the additional blood flow within his body and the extra hormones that this releases. Nurofen does help Alex so we will continue with this for the time being and monitor him carefully. As Dr Rees advised today, we are always breaking new ground with Alex because of his underlying condition and just need to take each new development as it comes!

Alex is back at school tomorrow and should be horse riding again on Saturday.

October 2005 No. 4

GOSH discharged Alex this PM so we are all back at home now. The surgical team confirmed today that they have in fact put in two stents (hollow metal cylinders) at different places in the aortic artery. At its narrowest point the artery had closed to a gap of just 3.5mm which is much too narrow, the other crtical point was at 7.1mm, again too narrow.

The results from the tests this am show that the volume flow of blood through the heart has increased by over 20% and his blood pressure has dropped by over 35%. These are good results and should see Alex through for the next 4 - 5 years.

He will continue to be reviewed on a regular basis by GOSH during this period, however the surgical team did advise us that the next operation may well need to be undertaken on a "closed heart" rather than by "angioplasty" as per Monday's operation. If this is the case then Alex will need to spend a lot longer in hospital as this will be more invasive. Still we will cross that bridge when we get there. Now we just need to get his left eye and saliva glands sorted!

Thanks again for all the messages of support and cards for Alex! It's great to know that family and friends are thinking of him.

October 2005 No. 3

Alex had his operation yesterday and is now recovering in GOSH. During the operation the surgical team took the decision to insert a stent into the aorta artery in order to increase the width and reduce the pressure. This has worked and Alex's BP has dropped by about 30% which is good news. Inserting the stent means that he may need a closed heart operation when he is a little older but we will get more details on this today. Thanks to everyone who sent us messages of support, they have been very much appreciated.

October 2005 No. 2

Just to let everyone know that GOSH contacted us on Friday 14th and would like to operate on Alex on Monday 17th. This means a bit of of frantic re-organising etc. but we will be going on Monday! Will post a further update once we have the results from the operation.

October 2005

We have just got back from GOSH and they have confirmed that Alex does need a further operation on his heart. This will probably take place within the next 4 weeks. The operation will be similar to those that were carried out when Alex was 18mths old whereby a balloon was inserted into his Aorta and gently expanded to make it a little wider. The only difference this time is that they may need to put a stent in place to keep the artery open.

Alex is ok in himself, but does have a little trouble sleeping and generally does not have as much energy as normal, he is still going to school where everyone is being very supportive.

Alex had his first riding lesson on the weekend and he really enjoyed himself. He will now be going every other Saturday!

When we have a confirmed date from GOSH we will post another update.

September 2005

September is here and Alex is now back at school after a busy summer. We have been to a couple of local farms, to Southwater Country Park and have visited a number of friends. Also, we did a little collecting at Gatwick Airport for Unique. Alex was so well behaved for the hour that we had the collecting tin. Alex is such a chatterbox now that from the moment he wakes up, until he goes to bed he is talking. Dare anyone ignore him, he shouts until you answer!

He has started talking in his sleep as well some nights, so even bedtime is not a guarantee of peace! Alex has also started in his new class. He is now in Infant Orange and seems to have settled very well. Swimming and trampolining are probably helping in making him so happy to be back. We are still waiting to hear from GOSH on Alex's heart operation, hopefully this will be in the next couple of weeks. As soon as we know we will post another update.

Joseph is crawling now so the house is slowly being upended piece by piece! Stairgates and other barriers are slowing forming in various places, some are proving more effective than others!

August 2005

Following a recent visit to GOSH, it looks likley that Alex will need a further operation on his heart,the repairs previously undertaken have not kept pace with his growth which means that the pulse in his legs is not as strong as it needs to be. The consultant Dr Rees is currently reviewing the options for Alex with his team and we should hear within the next few weeks.

Alex also needs an operation on his left eye, the eyelid is lower than it should be and we and the consultants now finally agree that it is affecting his sight in that eye. They will see him again in six months with a view to scheduling the operation. We are also considering an operation to resite his saliva glands to help with his dribbling, he is currently wearing hyoscine patches which help but this is not a permanent solution.

Given all of the above Alex is still full of mischief and is really enjoying his summer holidays! The picture on the right shows him driving a tractor at Crealy Park in Exmouth on our recent trip to Dorset.