Will’s First Year with Talipes

Next week it will be Will’s first birthday. Will was born August 31st 2009, with severe bilateral talipes. The talipes were picked up on my wife’s 20 week scan.

Scan’s can be one of the most exciting times in a pregnancy, finding out all about your baby, seeing your baby for the first time. It is also one of the most nerve wracking times in your life, as the sonographer checks to see everything is ok with your little one. You dread the worst, especially when they tell your wife to empty her bladder as they need to check the legs in more detail. Even worse when they switch the machine off, turn round to you and say “I’m so sorry”.

At this point, every tiny bit of excitement is replaced by fear and worry. The sonographer tries to explain what they have seen, but you just think the worst. We were then put in a room and told that a midwife will come to see us and explain everything. That was one of the longest times of our lives. Thankfully after such an awful time in the scan room, the midwife explained to us in full what the situation was, what would need to be done and possible treatments after birth.

Will was diagnosed with bilateral talipes. Also known as clubfoot, in both feet. At this stage they could not tell how severe and whether it was linked to any other issues. For this we had to come back for some more scans later in the pregnancy. We were told about support websites, including the great Steps Charity site. This included a forum to talk to parents of babies and children who suffer with the same. In the pregnancy this was a valuable resource and gave us more confidence about what lay ahead. In fact the more we read and talked to other parents, the more we thought that the way the sonographer told us was way over the top and could have done this in a much better way.

As the pregnancy went on we had other scans, and although they could not rule out 100%, they didn’t believe it was linked to anything else.

August 31st, 1am and my wife’s contractions start. 7.37am and Will was born. His talipes were massively evident to the point they were classed as severe. Up in the ward and the nurse came and told us that we would be referred to Nottingham Queens Medical Centre (QMC) Hospital in the Childrens Clinic.

Two weeks after he was born, we took Will to the QMC where he was to be looked after by Mr Hunter. He straight away said that his talipes were severe and that he would need to start his treatment straight away. This was to be approximately 6-8 weeks of being in plaster from his toes all the way up to his hips, to be replaced weekly. A tenotomy followed by another 3 weeks in plaster. He would then need to be in a special boots and bar 23 and a half hours a day for about three months, which hopefully would be reduced down to nap and sleep times until he is about 3 or 4 years of age.

Will was put into plasters at his first appointment and it was heartbreaking to see him lose the movement of his legs and feet. But we knew it had to be done. The first night was awful. He cried virtually all of the night. To the point where we rang the emergency doctor to see if we could give him anything, but he was too young. Unfortunately as the emergency doctor said, we had to just ‘grin and bear it’. It eased over the next few nights.

What we didn’t think about was what other people would think when we took Will out. You could see people looking at Will’s legs and they’d look at us. We couldn’t help but think that they thought we’d hurt him or we’d dropped him. It was awful, it was something we had to get used to very quickly and become thick skinned.

Every Tuesday we’d have to return to the QMC to have Will”s feet adjusted and replastered. What I had to learn very quickly was how to remove the plasters. This had to be done at home about an hour or so before his appointment. It was done by soaking them in warm water, loosening the plaster cast and then peeling off the bandages. It wasn’t easy. The first week it took me nearly an hour. Having to keep the water warm enough for Will, and trying not to scare him whilst I was yanking at his feet. In later weeks, scissors were brought in, being extremely careful, but they were very useful. Over the space of seven weeks, I managed to get it down to 25 minutes.

The nights were hard, the plasters were obviously weighing Will’s legs down and making it very uncomfortable. The first few nights after a plaster change were the worst, with him being in more pain. We tried lifting his feet with cushions which helped, in the end we went against all advise about baby’s sleeping and he slept on his front. Remarkably he found this more comfortable and he managed to sleep much better, it was still bad, but we were managing to get better spells of sleep in between his feeds.

Will had seven plasters altogether and after which he had to have a tenotomy. This was a procedure done under a local anaesthetic. He would have his tendons sliced in both ankles. He’d then be put in plaster for another three weeks. We’d been dreading this operation ever since we knew that Will would have to have it. I couldn’t watch, and got quite emotional during it. But it was very quick and he didn’t feel a thing. He also was allowed a double dose of Calpol, it was when the anaesthetic ran out and the Calpol wore off was the worst stages.

Three weeks flew by and it was now the final time to take off the plasters, by now Will’s feet had completely turned to the correct position. In around three to four months Mr Hunter had fixed Will’s feet. It was now a case of keeping them fixed.

It was then time for another visit to the hospital, a visit to the Orthotics department to have his boots and bar fitted and then another checkup with Mr Hunter. He was given white Markell boots, which involved using shoelaces to keep tight. Mr Hunter was extremely happy with Will’s progress and advised us that he’d need to wear them 23 hours a day. He also advised that the first few nights would be quite hard. How right he was.

All I can remember for the first few weeks was Will constantly waking up crying, always checking whether his feet had slipped out of the boots, undoing and tightening them again. It was extremely hard. He didn’t take to then very well. In fact we found the Markell boots very hard to deal with, that much that we rang Orthotics up to see if there were others he could have. They advised us that they were trying out a new set of boots and asked us if we wanted to use them. These were blue and had two Velcro straps and a buckle. These were brilliant. They were so easy to put on and keep on. I don’t know the names of them but would really recommend them.

It didn’t help Will’s sleep but did ease managing his boots better. It was around this time that we decided to try and claim for Disability Living Allowance for Will. We thought we had a good case with the amount of times we were having to get up to help him at night, and his basic needs outweighed the needs of a child that didn’t have Talipes.

It took me over a week to fill in the 50+ page form, I did a diary of how many times we got up at night and for how long for, and sent lots of literature I’d received from the Steps charity. I was quite sceptical whether we would be awarded the DLA due to many people being turned down on the Steps website forum, but were overjoyed when two weeks later we received a letter saying we’d been awarded the highest care component. I would recommend any parent of a child with talipes to claim.

Will was to wear his boots and bar 23 hours a day for three months. An extremely long three months, and it was awful seeing him so restricted. He was getting to the age where he was sitting up and trying to move around. But after two months we were back at the hospital for another checkup.

Mr Hunter again was extremely happy with Will’s progress, that much that after another month of 23 hours a day we could reduce this down to night time and nap times. This was great to give Will a bit of freedom, since two weeks of age and for around seven months he’d been restricted either with plaster casts or boots and bar and now during the day he was free from all of this.

Nightimes were still the same and probably were slightly worse due to him becoming used to not having to wear his boots and bar for the majority of the day. During the day Will was starting to become more mobile and starting to crawl.

By the middle of April we had another checkup at hospital. Mr Hunter again was very happy with his progress, he thought one of his feet was still a bit tight, but this would sort out by using the boots and bar. He was that happy with his progress, that we didn’t need another appointment for six months, in October.

Over the past few months Will has become more and more used to his boots and bar. His night wakening have reduced immensely and we have gone through spells of sleep throughs. It still is a bit of a shock to your system when he now wakes, but we are thankful for improved sleep.

Will has also been standing up now for a couple of months, and it looks like it isn’t bothering him and is causing no pain. He is gradually becoming more confident in his standing and is shuffling along with the help of the sofa and other objects.

It was then this week when Will managed to walk with the help of his walker which was an amazing milestone for us. For over a year we had wondered whether he’d be able to walk ok, and now he was, with the help of his walker. We don’t think it will be too long before he won’t be using this and have the strength to be walking on his own. View Video of Will walking

It’s been a hard but amazing year, seeing our baby’s feet change from having severe talipes to the point where he is walking, times we never thought it would happen. An emotional rolllercoaster I would say, but an amazing journey. It’s by no means finished and there is always the worry of a relapse. We have our next appointment in October, so we are extremely interested to see what Mr Hunter thinks about his progress.

Will is one next week, I cant believe how quickly it has gone. At times I felt it wasn’t so quick, but looking back and what he has gone through, it seems like yesterday when we were in the labour suite looking at this tiny baby, taking him weekly to hospital, to the point where he is now. I probably wouldn’t have said this at many of the 3am wakenings, but I’ve loved every minute of it. Especially seeing him walking with a big smile on his face.

Adobe vs Apple

Ok this is going to be hard. I’m a self confessed Apple fan boy. Steve Jobs is God. Yet I’m a web developer that has been using Adobe products for over 10 years. So this spat between the two companies is a difficult one to judge in my eyes.
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The demise of Coldfusion in the UK…(and Adobe???)

I love Coldfusion, there I said it. I really do. I’ve been using it now for over 9 years and I’ve made a career out of it. I’ve worked at a huge US financial institution for over eight years in the UK using it and pushed and pushed for them to continue to use it when they’ve looked at alternative solutions. I moved to an IT ‘cloud computing’ company and managed their website using Coldfusion, building great functionality and the company is going from strength to strength and is a major player in the industry. As I said, I’ve made a career out of it. My knowledge and expertise of Coldfusion has put me in roles which have helped me pay for the wedding when I married my amazing wife. It’s helped me bring up and and look after my beautiful children. Pay for an amazing house we live in, and give me a good standard of living.

Yet over the last few years, I have started to worry, and it comes down to this simple statement.

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Derby 10k Run

Finishing the Derby 10k run

I am still here…. As you may know I have decided this year to complete a number of runs to raise money for the Steps Charity. Steps is the charity that has supported us with William after he was born with Bilateral Talipes. So to give something back to Steps, I have decided to complete a number of runs this year with the aim to compete in a full marathon in 2011.

On April 11th 2010 I completed my first run, running in the Derby 10k run. What made this achievement even more satisfying for myself was that the week leading up to the run I was quite unwell with a cough and a cold and the night before I was very close to pulling out. I am so glad I didn’t.

Even more satisfying is that I hadn’t really trained as much as I should have. I had completed the Sport Relief mile a few weeks before quite happily and had upped my training but the most I had run was 3.3 miles. So to go from averaging 2 miles every training session to completing 6.2 miles for the event itself and not feeling any major issues during the run was really good for me.

I’m now in training for the Robin Hood half marathon which will take place in September. I also aim to get another 10k run in before then.

You can sponsor me for all my runs in 2010 at www.justgiving.com/ppounder

Wintry Weather

Not much from me I know. Very sorry. Been very busy with the kids. Will is teething quite badly but is doing very well with his boots and bar. Personally I’ve had my head down trying to get KnowledgeHost closer to a beta release.

Over the past 3 weeks or so we’ve had no end of snow, an amount I’ve not seen since I was a young lad. New Years Day we drove over the Peak District to my sister-in-law and brother-in-laws in Manchester and it was absolutely gorgeous. The beautiful side of snowfall. Now though its that horrible slushy rubbish which you wish would just disappear.

Running for Charity

Hi All,

You may have noticed that I have added a Fundraising/Marathon section to the site. This is because I’ve just registered myself to run the Edinburgh Marathon. Unfortunately it looks like I was a bit late to apply for the ballot for next year’s London Marathon, however I am on the shortlist for a charity spot. So I could end up doing two marathons within a month.

I will be running for the Steps Charity who are a small national charity supporting children and adults affected by a lower limb condition such as clubfoot or a hip condition. Will was born with bilateral fixed talipes which means both of his feet are pointed inwards. He is currently undergoing treatment to correct these, which involves plaster casts, an operation and then wearing special boots for a time to ensure that his feet when corrected do not relapse.

Seeing Will undergo this treatment has made both myself and my wife feel that we would like to contribute and raise funds for the charity. I have decided along the path of running a marathon, which I’m happy to say my brother will be joining me. And both Clair and myself will be coming up with more fundraising ideas over the next few months. Keep your eyes peeled.

In the meantime, please take a look at my fundraising and training pages. And if you feel generous, you can visit my JustGiving page.

Kind regards

Paul