21st March 2010 - Last week Bethan had her check up at Birmingham. Dr Giovanni very pleased with her (SATs 95). He didn’t scan but was happy to leave Bethan 12 months before he sees her again!

1st March 2010 - The very first tooth fairy will be calling tonight.! A front tooth has been wiggling for days. As Beth was cleaning her teeth this morning the tooth finally fell out.

28th February 2010 - Bethan’s health has been very good in recent months, despite the cold weather. On a good day she will walk to school (pushing her own buggy!) with Mandy or Bryan acting as ‘dog pooh look outs’. On a bad day she’s in the buggy before we get to the end of the road. However by the end of school she is so tired that Beth has to resort to the buggy. Perhaps she’ll walk both ways when the weather warms up.

INR level is being checked every 4 weeks now so it’s saved us a few journeys to Worcester. We have a check up at Birmingham in the middle of March.

16th May 2012 - A whole 12 months has gone by and Bethan has continued to improve educationally. Her reading has come on best. She still has her one to one teaching assistant which has helped enormously. Her behaviour since sessions with the behavioural specialist has improved markedly and rarely has tantrums unless there is a good reason (see below!). The buggy is a permanent feature. Presently we are trying to renew her disabled badge and having to be assessed by a physiotherapist in a few weeks time.

Yesterday we had our annual visit to Birmingham Children’s Hospital for cardiac check. Unfortunately nice Dr Giovanni is on long term sick and a (clinical, non empathetic) Professor is covering. Bethan kicked off when he came to scan her heart (what else would he expect!). We ended up in Clinical Investigations department being coaxed by two very lovely technicians who got her watching Toy Story whilst they did the scan. She sat there for 25 minutes whilst they messed about - quiet as a lamb . Unbelievable - Pixar is the best! This was a weight off our shoulders as she hasn’t been properly scanned for 2 years. The visit was a success in that SATs were 94 (as expected for hypoplasts post-Fontan procedure). Heart function good. Only issue was whether a fenestration (a hole to you and me) in the heart was open or closed for passage of blood. The professor needs to consult his colleagues to see if it was of concern.

Other issues for Beth at the moment are her teeth. She needs a tooth filled and unfortunately she kicked off when local dentist tried to do it a few weeks ago. The upshot is that we’re going to have it done at Birmingham Dental Hospital where they will put her to sleep.

Beth’s blood levels (INR) should be between 2 and 3. She has it checked regularly at Worcester Hospital. In recent weeks they have been below 2 so they have to adjust the warfarin levels to compensate. We’re hoping to receive our own testing machine to do the test at home but need our local G.P. to fund the disposable test strips used.

30th May 2011 - We brought Bethan’s annual Birmingham check-up forward as she was starting to get out of breath after limited exercise. Dr Giovanni examined her heart and said that the function was excellent (relative to her condition). She had a chest x-ray, the results of which we are waiting for although we are sure there isn’t a problem as we would have heard by now. Perhaps this is how Bethan will be  - happy in herself, but the child buggy may be more of a permanent feature.

In recent months, her behaviour has  deteriorated Most of the time, she is a polite, well mannered child. However every so often she will dig her heels in and is determined to get her way. This frequently results in a full blown tantrum (just after Christmas, it lasted over 2 hours of screaming and pushing behaviour). It will kick off at the slightest thing. Last week, she started spitting. We are organising a behavioural specialist to talk to us and also a trip to the Educational Psychologist in the next few months.  

January 2013 - Since May 2012 Beth has continued to do well. After much fuss and aggravation, her blue disability badge was renewed. She has attended another clinic with Dr Giovanni who managed to get a full heart scan and ecg check (after a lot of coaxing). He is very pleased with her progress and drugs remain as they were (Enalapril, Warfarin and inhaler). Oxygen saturations in early 90s.

We didn’t get our own blood level machine in the end so continue to visit Worcester General. Her levels have been erratic of late and the blood lab compensate by increasing doses of warfarin temporarily.

We have made some progress in sorting the cavity in one tooth. Her dental appointment last month at Birmingham resulted in a teeth x-ray and diagnosis that they would cap the tooth on a temporary basis but remove in about a year’s time (along with the corresponding one in the upper jaw) when they are confident that surrounding teeth will grow into the gap. Only the small matter left of coaxing her to open her mouth for long enough for the work to be done. Watch this space!

Beth continues to enjoy school but, despite skilled efforts by the staff, we worry about the gap between her learning against her friends. Reading is very good but Maths doesn’t seem to move on at all. She is still trying to get to grips with number bonds to 10 (e.g. 1+9=10; 2+8=10 etc).Our minds are starting to turn to what happens to her at middle school (Sept 2014).

Doing homework with the school Meerkat - November 2012

In the dental surgery at Birmingham Children’s Hospital - December 2012

Christmas 2012 with Megan

July 2014

Beth has had a good 18 months since the last update:

• Teeth finally sorted out as a day case at Birmingham Children’s Hospital. She was put to sleep earlier this year to extract 3 teeth and coat surfaces to help avoid infection in the future. Nearly 2 years to sort out the teeth problem, the result of a little girl who hates being touched medically and an over burdened N.H.S.

• Bethan has finished at Bengeworth First School. She was awarded a trophy as the highest achiever in the whole school and sung solo in the year 5 Summer production. Boy has she come along way since the dark days of 2004!

• Bethan will be starting at Alderman Knight Special Needs School at Tewkesbury. This school takes pupils with moderate learning difficulties and is ideal for Beth - small class sizes and high level of teacher support. The application took 18 months with a lot of the educational professionals saying that we would struggle to get her in, particularly as the school is outside Worcestershire. As it happens Beth got accepted first time! She will probably remain there until 18 years old.

• Mandy has applied to Make a Wish charity to make Bethan’s dream come true - to meet Ant and Dec! They are trying to arrange the meet for late Summer.

• We now have our own INR machine donated by Children’s Heart Federation so it saves those trips to Worcester Hospital.

Feb 2016

Doesn’t time fly! Beth is now 11. She is well settled at her new school Alderman Knight Special Needs School in Tewkesbury.

Highlight of the last 12 months has been a meeting with Ant & Dec at the ITV Studios in London in March 2015. The meeting was kindly arranged by the ’Make a Wish’ charity and the weekend included a chauffer-driven limousine; dinner at Planet Hollywood and a private guided tour of the Tower of London by a Beefeater! We even met Dec’s new wife asa she looked after us during the rehearsals for Saturday Takeaway (the one where they were rapping with Professor Green!).

Here are Bethan’s 2016 pictures……..