January 2012
Alex has had a great christmas and new year, got lot's of new toys and some good DVD's to watch as well! The holiday break has come at good time for Alex after his first term at Clifton Hills. It ended well for him though as he won a citixenship award for being helpful and kind to other students. If only he could do that at home!
We have noticed that he is struggling to put his heels down on the floor, his calves / hamstrings are very tight and it's now beginning to give him some pain in his knees, we were hoping to avoid another operation in 2012 given that he will need one on his heart but this looks like the only option. In the interim, he continue to wear his splints at night which is less of an issue now that's not too warm in the evenings.
Alex has now moved up from the Yippee club to the Yip for youth club which is more for older children and teenagers, this will be great for him to mix with other older disabled children in a social setting and we hope that he has a great time there.
He still gets on well with his brother Joseph and is also now the proud owner of a Nintendo DS on which to hope to install some suitable games for him to both play and learn from.
October 2011
Alex has now been at his new school (Clifton Hills in Caterham) since early September and is setting into the new routine, some of his friends from his previous school (Brooklands in Reigate) have also moved to Clifton Hills with him so that helps ease the transition for all. There are lot's of new things for Alex to learn and do and he looks pretty tired when he get's home! However he does appear to have taken to Clifton Hills and we hope that he can fulfil his potential there.
Since the last update Alex has been back to Great Ormond Street for a check up on his heart and also the orthopaedic hospital in Carshalton. GOSH were reasonably pleased with Alex although his Blood Pressure is a little high and it looks as if he will need to go back into hospital over the next few months to have the stents opened up a little more to create more blood flow and ease the pressure. He has a futher check up early in 2012 and a decision will be taken then.. The team at Carshalton are concerned about Alex's legs given he still finds it difficult to put his heels down flat when walking, he had an operation on both legs a couple of years ago to help the ligaments and tendons to stretch out, looks as if he made need to have this done again.
Alex has spent some of his free time recently at the Yipee Club in RedhIll and Reigate, this club has a dedicated section for disabled children and Alex is able to go out on trips, take part in activities and cause general mischief with his friends!
August 2011
School holidays are here! Since breaking up from School the boys have been on holiday to the peak district to the same place in Darwin forest where we stayed last year and we were fortunate with the weather as the rain stayed away. We visited all the major theme parks including Alton Towers, Drayton Manor and Gullivers. We also went to the National Space Centre to look at space artifacts such as the original sputnik rockets and learned a lot about the solar system, our planet and other facinating stuff, well worth a visit if your near Leicester!
Alex left Brooklands this year and will now be moving to Clifton Hills in Caterham. It's both a time to celebrate his moving on but also to reflect on the great times he has had at Brooklands. It's a wonderful school with a group of very dedicated teachers and staff. We can't thank them enough for what they have done for Alex since he joined them 5 years ago. For his last week, Alex went on his first residential course! He got to stay at Hindleap Warren and did a whole range of new activities including rope walking, kayaking an abseiling. He had a a fantastic time and what a great send off from Brooklands!
Alex has been in good health recently and continues to progress in some areas, his speech is becoming increasingly more complex and he just needs to slow down sometimes so the rest of us can keep up!
June 2011
Both the boys have been busy at School and Alex in particular has been to his new school, Clifton Hills in Caterham Surrey a few times now as part of getting familiar with what will be his new surroundings in September. He's looking forward to going there and some of his friends will be moving up with him.
Alex did well at GOSH in April, he had his eyes checked and now has a new perscription. They is a significant difference between his two eyes, this left has very poor vision, whereas his right is actually quite good. Typical Alex really! He is now good at wearing his glasses and sometime remembers them when he hasn't got them on!
Alex now has some new splints for his legs to help encourage him to put his heel down when he walks, he wears them most school days and has got quite used to them, hopefully they will help in the long term and defer the need for further operations.
We get to go on holiday in a few weeks, we have decided to go back to the the resort we went to last year as the boys had a great time and they are both at the age where they will still enjoy the theme parks! They get to stay in a log cabin which is quite exciting and we just hope that the weather is kind to us!
January 2011
The boys had a good xmas and were lucky to get lot's of presents! The main one for Alex was a touchscreen computer. This is great as he can now play games independently involving various challenges that encourage him to move objects around the screen, spot the pairs, and interact with online characters. He enjoys doing this and it's a good way to get him to concentrate! We can add new games as his confidence and skills develop and this is truly something that can grow with him. As with all new toys his younger brother Joseph also has the occasional go!
Alex also got an MP3 player for Christmas as he is really getting into music and dancing! We have loaded some great tracks onto it and he plays them through a speaker in his bedroom...........will soon be turning into the typical teen!
We have also had it confirmed that Alex has a place at Clifton Hills School in Caterham. This is a special needs school and should see Alex through until he is 18 / 19. We have viewed the school and met the headmistriss and some of the teachers and Alex has also been for a visit. It does seem strange to be considering the next school for Alex, but he will be 12 in November this year. He will go to Clifton Hills in September 2012.
The next appointments for Alex at GOSH are in April so check back to see how he gets on...............
Sept 2010
Alex has been out on his trike over the last two weekends and is really enjoying it! It's very stable and enables him to cycle round with us watching from the side which is great for his confidence. We have uploaded some pictures in the album call New Trike! The trike was purchased for Alex by the charity Children with Special Needs Foundation to whom we are very grateful. See more of the great work they do at the new link on the left.
Sept 2010
Alex is back from GOSH where we had a rollercoaster 48 hours but in the end it's turned out well for Alex, the operation to put in and modify to new stents to relieve the obstruction in his Aorta has gone well. Alex has a check up booked for October but in the interim we are back at GOSH for another appointment, this time related to Alex's teeth!
Alex's new trike has just arrived, will upload some photo's shortly, this will enable him to get about and ride with Joseph when we go over the park etc. He is very pleased with it and can't wait to try it out!
July 2010
We have just returned from our summer holiday. We spent a week in a spacious log cabin in a resort near the peak district. The boys went swimming most days and went to Alton Towers (x3!), Drayton Manor and Gullivers theme parks! We have uploaded a few photos in the Summer 2010 Album.
GOSH have confirmed that Alex does need another operation and this has been confirmed for the 20th August, we will let you know how this goes. Alex is still wearing his glasses which is great! His younger brother Joseph wants a pair now because they look so cool!
We visited Clifton Hills school this week to meet the deputy head and take a look around the school and get a feel for whether or not it would be suitable for Alex. We liked the school and the teaching ethos which focuses on self help skills and communication which are
key to facilitating some degree of independence for the pupils when they leave school. We will apply as soon as the papers are issued in October and hope that we can secure a place for Alex in Sept 2011.
May 2010
Summer is nearly here and the boys can now play outside on the ever favourite trampoline and their bikes. Alex has been to GOSH, he is doing ok but it looks as if he will need another operation to widen one of his stents to help increase blood flow to a particular region of his heart. Alex also saw the eye consultant who confirmed that Alex's right eye is much stronger than the lefr, she prescibed some glasses for Alex which he has really taken too! He wears them whenever he can!
We are starting to think about Alex's next school given that he only has one more year after this one in Brooklands. Clifton Hills in Caterham is the most likely but Alex will need an assessment to help
determine his needs.
February 2010
The boys have just finished their half term holiday and are now back at school for the run up to Easter. Alex continues to do well at School and his speech continues to improve, sometimes his sentances get quite complex and it's a little hard to follow what he is saying, however we look for supporting clues and normally get there in the end!
Alex returns to Great Ormond Street in April for a check up on his heart and eyes. We are hoping that he doesn't need any further operations on his heart for the time being but will clearly be guided by the Consultants at GOSH. He seems generally well and
and has good energy levels which is normally a good indicator.
November 2009
Alex and Joseph had their joint birthday party yesterday at the Sovreign Centre in Reigate. The centre has a big hall where everyone sat for birthday tea and the sports hall had a tramponline, bouncy castle, climbing frames and a football area. We had 50 children in total so it was a little noisy but everyone seem to have a great time. We have set up a new photo album called Birthday party 2009.
Both of the boys are getting excited about Christmas and enjoy visitng the local garden centres to look at all of the displays of lights, trees and decorations. Both of them have written
their letters to Santa so they will have to see what they get!
October 2009
The boys are currently enjoying the half term holiday and playing the newest family member, a kitten called Tilly! They have both really taken to her and really enjoy watching her antics as she explores her new home.
Alex has settled back in well to school and the new term, he definately has more energy and is enjoying playing with his friends. Joseph has also started well and is making new friends and it looks as if there is a fellow dinasour hunter in the class! Alex is now sleeping better with the
new melatonin and this has helped him greatly.
September 2009
Alex has just got back from GOSH where he had a check up following his recent operation. He got to see the Consultant Dr Rees how performed the original and some of the subsequent operations. They completed and Echo, BP and Pulse check and overall were pleased with him. He is making a good recovery and the increased flow instigated by the operation is certainly giving him some benefit. His next check up is in 6 months.
Alex is back at school now and settling in well, Joseph has also started School so everyone is getting used to a new routine in the morning! We will be uploading some new photo's from the summer holidays shortly.
August 2009
We have just returned from our summer holiday to Derbyshire, we stayed near Alfreton and spent the week visiting the various theme parks, Alton Towers, Gullivers and a few others! The boys had a great time and Alex did remarkably well given his recent operation, He has recovered well and has more energy. Alex is stuggling to get off to sleep at night so he is back on the melatonin and we hope that it works for him. During the summer holidays Alex will be going to the Yippe Club and to Springboard in Horsham. Joseph will be leaving nursery and making the transition to his new school, Langshott in Horley, I hope they know what they are taking on!
Alex has a follow up appointment in early September at GOSH and we will then get a better view on how successful the operation has been. We have put some photos in the Summer 2009 album.
July 2009
Alex went into GOSH on the 14th July to have the stent in his Aorta widended, measurements have indicated that it's currently 9mm. The operation went ahead and via a balloon the stent was widended to 12mm. This is 33% increase and should improve the flow though that artery. During the operation they also noted that the carotid artery is also narrow at a point which may make it difficult to operate on going forward. We will need to see if this proves a challenge as Alex gets older. Alex was discharged on Thursday the 16th and was very happy to be going home. He had spent his time in the hospital watching the 2008 Formula 1 season (twice!) on DVD. Alex really enjoyes F1 but get's bored during the driver interviews and analysis!
Since he has been home Alex has looked better although he picked up a dose of eczema from the hospital sheets (different washing powder), we picked this up quickly and it should calm down in a few days. The staff at GOSH were again great with Alex and did the best to make his stay as enjoyable as possible. We also managed to avoid a usual parking ticket and subsequent appeal process which is always welcome!
We go on holiday shortly so we will soon have some new photo's to publish. We are off to Derbyshire and will be staying near Alton Towers.
May 2009
Alex had his annual MOT at GOSH in April where they checked his heart by performing an ECHO and an ECG, he also had an eye test in the afternoon to see how his vision was progressing. The days at GOSH are always long and tiring, however the staff are great and it's well worth the effort. The ECHO and ECG showed that one of the stents that Alex has in his heart to allow better blood flow is now not wide enough, this is because he has grown a lot over the last 12 months. We have noticed him getting tired a little more than usual so were not surpised. This stent hasn't yet been widened so following a review meeting at GOSH it's likely that this will be the next step. After that it will have to be taken out and replaced. Alex will be put to sleep for the operation to widen the stent and probably spend a day or two in hospital to recover. His eyesight is stronger in one eye, but again this is not a surprise, it's hard to tell sometimes whether he can actually see the object or if he is doing it from memory!
We should be moving house in May, this will mean that both Alex and Joseph get a double bedroom each, the new house also has a large garden - (120ft) so there will be lot's of room for friends and to play!
Joseph now spends much of his time dressed up as Spiderman (see photos) he is also starting to really help Alex with different things and that's great to see. The two of them play well together and they
are very close.
March 2009
Alex is walking well now, we are still using the splints and they do appear to be helping. Alex is also talking pretty much all of the time now and recently won star of the week at school for describing some animals he met whilst on a school trip.
We have been explaining to both of the boys that they will be moving soon to our new home in Horley. All is going well and we should be in the new house sometime in May. Both of the boys will have a double bedroom and a seperate play room down stairs. The house also has a 120ft garden so there will be lot's of room to run off that excess energy!
Joseph has now decided that he is too big for nursery! He will have to hold on for a while as school doesn't start until September! He will be going to Horley infants which is not too far from the new house.
December 2008
Alex continues to do well with his walking, in addition he now sleeps with his calf / ankles in a splint to keep them straight through the nite. Alex does find these a bit uncomfortable and he is not able to walk in them, however they are helping his ankles and feet so we will be peservering with them.
Both the boys had a great Birthday party at the Sovereign Centre in Reigate and some of the photos in the new album (Birthday and Xmas 2008) were taken there. They also really enjoyed Christmas and it was great to see Alex caught up in Joseph's excitement! They got lots of presents and are sharing many of the toys although they both have their favourites, Joseph is really into Transformers and Alex loves his Little Einstein Rocket.
We would like to thank everyone for their continued support during 2008 and wish you all a happy and more prosperous 2009!
October 2008
Alex has progressed with his walking so we thought that we would try him on his beloved scooter! We took the boys out over the weekend, Alex did really well and had a great time. We need to be careful not to overstrain his muscles too much given their 7 weeks of inactivity but he seems pretty good today with no ill effects.
We took some photos and these are in the new album called October 2008 - Scoot Away!
Early October 2008
Alex has new legs! the casts are now off and Alex is learning to walk again. He is starting to use the heel to toe movement and is progressing well. Let's hope he can keep it going!
September 2008
Alex is doing really well in his casts and is starting to walk more using his heels which is really good. We just need him to keep doing it when the casts come off! This is due to happen on the 8th October which is just over a week away. After that Alex will need some physio to help his muscles, ligaments and tendons to recover
and then we will be able to properly assess him.
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!
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 apart 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!