First cast removal/Before and After images

Ava had her first cast removed on Wednesday and we were able to see her leg and the progress made. As you can see the majority of difference has now been achieved (the consultant estimated that there is currently a 1cm difference which will obviously become worse as she grows). However for now she has legs that are near enough the same length - at last!

Her leg does have lots of scabs and scars but these should fade over time. Her foot looks really small though, and it was quite disheartening seeing that (there is currently 5 shoe sizes difference between her feet). I wish there was some kind of lengthening or procedure we could do on the foot, but this currently doesn't exist because of the large number of bones in the foot c.24!

Anyway we need to focus on the positives and the fact that this amazing procedure of leg lengthening has worked.

Ava is now back in cast which will be changed in 2 weeks time.

Frame removed

Today has been a really long day. Ava was up at 5am and we arrived at the ward just before 7am. Unfortunately we had to arrive at that time, even though Ava's operation was late afternoon.

Ava obviously had to be nil by mouth because of the general anaesthetic, which was by no means easy for a hungry 6 year old who loves her food. Eventually she was called down at 4pm. The operation didn't take long, and it was amazing to see her leg in cast minus the frame. You can really notice how much her leg has grown. We can't wait for 7 or so weeks when the cast will be removed to see the longer leg in all its glory. However, I'm slightly nervous about how bad the scarring will be as she has had 18 holes in her leg plus the initial incision marks when they broke her bones during the first operation.

Ava reacted badly to the anaesthetic this time and has been quite violently sick. We'll hopefully be discharged soon so she can sleep in her own bed tonight.

The next hospital appointment is next week for more X-rays and then we'll be told when the next plaster cast change will be. Ava's leg is quite sore but with pain relief we will hopefully get her weight bearing over the next few days.

For tonight it's just about rest and ensuring Ava keeps food and drink down.

Pics below of the leg minus the frame. As you can see we also got to keep the frame itself!

Huge thanks to Mr Calder, Mary, Penina and all the nurses at the RNOH.

The end is in sight. Date for removal of frame

At last we are nearly at the finish line. We have been told at our appointment today that the frame will be removed next Thursday. Ava is understandably ecstatic and I feel huge relief. We only have one more pin site cleaning left - hurray!!!!

The X-rays below show how her bones have developed, so that the 6cm gap is pretty much closed.  Normally the consultant would have kept the frame on for another 4 weeks, but as Ava is now having serial plaster casts for 7/8 weeks we can get away with the frame being removed.

It is such a huge relief and something we have been looking forward to for 7 months!

I'll update next week with some images post op/frame removal.

The 6th month

We are now entering the 6 month stage. For those who have not read previous posts we have now completed the 6cm lengthening of Ava's leg and are now in the process of waiting for the bone to heal. We  had x rays yesterday and you can see the progression since the previous appointment. The fibula is now completely healed and more bone has developed in between the gap in the tibia.

We saw the consultant yesterday and he is pleased with the progress on the leg and feels the frame should be off in early October. Usually patients go into plaster cast for a few weeks, but he wants Ava to be in cast for a further 6 weeks where they will do some serial casting/Ponseti treatment on her foot to try and straighten it some more.

Ava had Ponseti on her foot when she was a baby but it didn't work so not sure whether we'll see any improvement now. However, we'll give it a go as we don't have anything to lose. Ava will then go back into a splint/AFO.

It's now the school summer holidays and Ava is doing well. She is now weight bearing on her leg and can walk (albeit a short distance) without the zimmerframe. She is so determined to walk, climb and generally do what other kids are doing which has enabled her to cope well through this whole process. We haven't heard her complaining about the frame in months, she just gets on with it.

She has told us that the things she is most looking forward to when the frame and plaster casts are removed is being able to swim and walking our 4 month old puppy.  She won't have long to wait!

Bottom ring and wires removed

We have just returned from the hospital where Ava had a small operation to remove the bottom ring and 4 wires in her foot. This now leaves her with the frame on her leg.

The operation was very quick and we were discharged the same day. Ava now has dressing covering these pin sites to prevent infection while they heal. The consultant wants Ava to now be weight bearing and start to walk with the frame. Apparently the more mobile she is, the quicker the bone will heal in her leg.

At the moment Ava's foot is sore and she is reluctant to put the foot down, but I'm sure in a few days time she'll be moving more.

Having the bottom ring removed brings us one step closer to the finish line. Roll on October!

I've included another photo of Ava's leg without the foot ring. If you look at this image vs the one I took before the frame was fitted you can see the progress. Although the difference in leg length will start to increase again as she grows, we know this procedure works and that after her second lengthening at 12 years old she will eventually have legs the same length.

PIN SITE INFECTION!

Just when we thought it was going so well, Ava has picked up her first pin site infection. To be fair we have been really lucky that she has gone so far without one, but they are not pleasant. The first sign that something wasn't right was on Monday when we found out she had complained to her teacher about a sore/aching leg. The teacher let her go through the school day and Ava went to a friends after school. The fact that she was dropped back early made me feel that something was definitely not right.

When Ava came home she had quite a high temperature and was very tearful. As the evening progressed she was shivering, but boiling hot to touch, and her leg was inflamed. We knew straight away that this was an infection.

The hospital discharged us with antibiotics so we started the course immediately and also gave Ava some Calpol. We were told by the hospital not to give ibuprofen as this interferes with the bone development (not something you want when you've spent 3 months increasing leg length).

Needless to say the past few days and nights have been hard. Ava hasn't slept much and has been in lots of pain. In the day she hasn't been able to move at all as it hurts too much, so the days have been spent with her leg elevated on the sofa. I have had to carry her to the toilet.

Today we went to the hospital as wanted to get the infection checked out as it had started to ooze pus and blood (not nice!) and Ava's leg was bright pink. They reassured us and said the infection should start to clear up after 72 hours, once the antibiotics have kicked in. Their advice was to keep giving Ava Calpol, clean the infected wound daily with Hydrex solution and ensure she rests.

Hopefully we'll be over the worst by the weekend as Ava is feeling pretty miserable, which is completely understandable.

6cm achieved and a straight leg!!!!

At last, we have now achieved our target of 6cm and a straight leg. When we look at Ava now she seems noticeably taller (as she's not tilting her hips to accommodate the difference in leg length) and her foot is touching the floor.  The biggest sign of change is the scar on her foot from a previous operation that used to end at her ankle but is now half way up her leg. It's amazing how much her skin must have stretched to accommodate the growth.

With the length completed we are now half way through the procedure. The frame must remain on until the bone has fully developed and hardened. It is difficult to say how long this will take as it depends upon how quickly Ava's body heals (each person is different), but we are looking at 4 months at least. Ava will then go into plaster cast for 6 weeks, followed by lots of physio to get her walking again. You can't rush this phase as its crucial that Ava doesn't fall and break the bone (which would be an absolute disaster!).

Ava is booked in to have a small operation in early July to remove the bottom ring of the frame. This is the ring which is attached to Ava's foot by 4 wires. This has been holding it in place while the rotation and lengthening has taken place. This ring, or rather the wires attached to the foot, has caused Ava the most discomfort. You can tell this as the pin sites are pretty gruesome to look at. The reason for the removal of this ring is to encourage Ava to weight bear while the bone is growing and the frame is still on. She will be a very happy girl when this is off.

Ava has now been wearing the frame for 3 months and is coping remarkably well. The early days of no sleeping, crying and pain seem a distant memory (apart from pin site cleaning which is still pretty traumatic for all). She is now determined to do everything she can to keep up with her friends and take part in all activities. While some things are still impossible, she gives everything a good go (within reason as i am still very aware that she has a 6cm break in her tibia and fibula even if she isn't!). So for parents who have a child who will undergo lengthening, it is hard going. However, children adapt so well and are so resilient, and seeing your target length achieved makes it all worth it.

The countdown is now on until the frame is removed. 4 months and counting.............

5.5cm but minor set back

Ava's gap in her bones has now reached 5.5cm. From looking at the x-ray below it is unbelievable that she has that level of break in both her tibia and fibula and doesn't complain and can still move around (albeit with the aid of a zimmerframe). This truly is an amazing procedure.

At today's hospital visit we were told that Ava's leg is starting to bow slightly. This is something that you don't want to happen during lengthening so the consultant has had to alter the rest of our program to try and do the remaining 0.5cm in length while rotating the bones so that they are correctly aligned. We won't know until the next x-ray in 2 weeks whether this has been successful or not. It's important that it is done now though before the new bone has started to harden.

To be honest we think this is only a minor setback and hopefully can be corrected. Things have been going well with Ava as she has not picked up a pin site infection and is generally (over the past few weeks) been coping well. So I suppose it was inevitable that something would crop up to complicate things slightly.

Lets hope in 2 weeks time that her leg is straight and we can then concentrate on letting the new bone heal.

Have also included a picture of Ava on her swing in the garden so you can see how determined she is for life to carry on as normal. I'm not a big fan of her doing this with a huge break in her bones, but it keeps her happy.

4cm down. Another 2cm to go......

Ava has now returned to school full time. Her school have been great with organising things to get her back in for full days. The classroom has been changed to accommodate her zimmerframe and wheelchair and they have provided extra help for her at break times. To be honest she is now pretty self sufficient but does need help carrying her lunch tray and someone to sit and play with her during the break.

In general she is now coping amazingly well. Even the hospital nurses have commented on how well she is doing for a child of her age. We do still have a few moments each week where she becomes upset or frustrated, but these are becoming rarer and she tends to get over things quite quickly.

Ava is much less bothered now when people look at her when we go out (and boy, do some people stare!). Ava's speed on the zimmerframe sometimes causes the most looks as she flies around (far too quickly for my liking). Infact Ava would far rather use the zimmer than the wheelchair, which is good, but it has resulted in her getting callouses on her palms. The solution for this has been to buy her wheelchair gloves. Thankfully I found a pink pair on Amazon.

We went to see the consultant today and we have now achieved a 4cm gap and the new bone is starting to grow. We discussed with him the option of doing another 2cm and have decided to proceed with this. Although this will extend the amount of time she spends in the frame, our view is that its on now so we might as well continue with the maximum the consultant feels happy with and what Ava can physically manage.

In our eyes this is good news as going for the full 6cm hopefully means that the second lengthening at 12 years old will take less time.

We also discussed the option of Ava having another ring fitted on her foot during the second lengthening to try and further correct the position of the foot at the same time as lengthening the leg. Again we have decided to go ahead with this, but its obviously a long way off.

4cm down. 2cm to go!

3.5cm achieved and x-rays

We had our hospital appointment today and the break in Ava's leg bones has now widened to 3.5cm. I have included an x-ray below which is a comparison between the current status vs. our x-ray from 2 weeks ago. The consultant is very happy with Ava's progress. We need to keep on with the knee exercises though to ensure Ava can straighten her leg, which is becoming harder.

Our current prescription finishes next Tuesday when we hope that the gap will have widened by 4cm. We then have a break from the actual lengthening/twisting until our next hospital appointment; which will be the week after.

It will now be during this appointment when the consultant will decide on whether we go for another 1 or 2 cm.

School Easter holidays

The Easter holidays has given Ava more time to get used to the frame. The days are definitely becoming easier (as are the nights - we've had quite a few where she has slept through). We've tried to keep things as normal as possible for her so the school holidays has involved having friends over, going to the cinema, zoo and to the seaside. There is definitely more planning involved when you have a child in a frame, but a lot of activities are still possible.

We try to avoid anything which reminds Ava of what she can't do - going to the park where she would usually ride her scooter or visit the playground, the swimming pool or to soft play.

We have been to a few parties too, and although Ava can't join in with the usual sports, dancing and games she has still enjoyed being there. She can still eat birthday cake and sweets!

Ava has also spent the holidays decorating her zimmerframe with stickers and ribbon. She was keen for it to not resemble her great grandma's, so it now looks like it belongs to a 6 year old girl.

I have applied for a Blue Badge, which hopefully our local authority will grant. This will be really important as one of the most difficult things when going out is parking and getting Ava from the car to wherever we're going. It's particularly hard when I have a toddler with me too. If your child will have to undergo lengthening then I would suggest you apply for this as early as possible (if you can, I'd recommend before they go into hospital). I applied when Ava was in hospital and am still waiting 6 weeks later.

In terms of the lengthening it's becoming more uncomfortable now, but Ava is being really brave. We have now opened the bones by 3cm, and have another 1cm to go on this prescription. On Wednesday the consultant will decide how much further he wants to go - another 1 or 2 cm. This will depend upon Wednesday's x-rays, which I'll be posting on the blog. Fingers crossed for good news!

2cm achieved and x-rays

It was our second follow up appointment with the consultant today and as you'll see from the x-rays below we have opened Ava's leg bones by 2cm. What you'll also notice from the x-rays is that new bone is beginning to form within the gaps. At the moment this is quite blurred on the images as it won't start to fully form until we have completed the lengthening.

We received Ava's new prescription during our appointment which will hopefully open the bones by a further 2cm (this will take another 20 days). So things are progressing as they should which is great news.

We have also been given some physio exercises for Ava's knee as it's common during lengthening for the knee to become very stiff, which can cause later problems. This is because it is not being used in the same way as Ava is not walking. I need to encourage her to straighten her leg as much as possible when sitting down and perform the exercises at least 3 times a day.

We are still monitoring Ava's foot. It hasn't turned inwards that much but is very swollen from the lengthening. From the discussions with the consultant today there will be additional future surgeries on Ava's foot, but there will come a point when we have to accept the position it's in.  This is because  with each surgery the foot loses some of its mobility, and Ava's foot is already extremely stiff (she has little ankle movement at all).

Some positive news is that the sleeping has improved and we're getting out and about more. Ava is a whizz on her zimmerframe in the house and she is much more used to being in the wheelchair outdoors (less self conscious and more used to people staring or asking her what's happened to her leg).

Tiredness, school, pin sites and clothing

It's been a tough few days.  Ava continues to sleep badly (averaging about 5 hours a night) so it's having a huge effect on everyone in our house. This lack of sleep means that Ava is very grumpy and tearful.  It also means our days are very long.

Without doubt this is one of the hardest things we've ever had to go through - its physically and mentally draining on everyone and its only been 3 weeks.  It's going to be a long 9 months!  We have to keep reminding ourselves of the end result, although this offers little comfort to Ava who 'just wants the frame off'.

Despite the lack of sleep Ava has managed to attend school for a number of mornings. This has been instead of the home schooling that we were initially told about.  This has come about following several meetings between us, the school, the hospital and our county ESTMA team (educational support team for medical absences). Hopefully this continues as Ava is so much happier being in the school environment surrounded by her friends. It provides a sense of normality for her which is a good thing at the moment.

She is, however, very embarrassed and self conscious about her frame in public. While she is ok with her classmates, she covers her face with her hands when she sees any of the other children as doesn't want them to look at her. Little does she know that this draws even more attention to herself.  I'm hoping this will become easier for her over the next few weeks.

Some good news is that the pin site cleaning only took us an hour this week. The pictures below show the equipment needed for this. The hospital provided enough material for a few weeks, but the rest has to be ordered from the GP.  I've included a picture of what the frame looks like minus the foam pads covering the pin sites so its possible to see what needs to be cleaned.  Although it was quicker this time, the whole process is still fairly stressful for all involved and is definitely a 2 man job in our house (i do the cleaning and Simon tries to distract Ava as much as possible).

A few tips on clothing for parents who have a child who will require lengthening, although this is more appropriate for girls.  The best item of clothing is obviously dresses as they go over the head. However, if your child is wearing the frame in winter months (or like us is experiencing the coldest March for 10 years!) then a dress is not always suitable as its impossible to wear tights or leggings with a frame.

We have bought a variety of track bottoms which we have had altered so they can fit over the frame. I had been told by the hospital to cut down one side of the trousers and stitch in Velcro. We found a dressmaker who did this, but Ava found it quite itchy on her skin and when she sat down the Velcro often unfastened. The solution has been to put a zip down the side - from top to bottom. This means you can zip up the trousers from the waist down to the start of  the frame.  In terms of knickers, the dressmaker has cut down one side and stitched in poppers. So far this has been working really well.

1cm achieved and x rays

Today was our first follow up appointment with the consultant since Ava's operation to have the frame fitted. As per the previous posts we have been performing the lengthening every morning for the past week. The good news (as you will see from the x rays below) is that by turning the struts on the frame according to Ava's programme we have achieved 1cm.

Although the new bone has yet to grow, the break in her bones (tibia and fibula) has widened by 1cm. Over the coming weeks the new bone will start to form and we'll be able to track this with future x rays that will take place fortnightly when we see the consultant.

We were told today that we are aiming to achieve 5cm of growth, rather than the full 6cm. This is because of Ava's age and length of leg. As I've explained in earlier posts Ava will need a second lengthening at 12 years old as her 'good' leg will continue to grow at a quicker rate. The remainder of the difference will be made up (hopefully) during this second lengthening.

We were also told its highly likely that the consultant will inject into the growth plates of Ava's 'good' leg at some point between the first and second lengthening.  This will be to slow down the growth which would reduce the discrepancy in length further. If Ava takes after her 6'4" dad then this should still make her taller than my 5'5", even with her growth being slowed down.

In terms of how the days are going, they are still very much up and down. Ava generally is in much better spirits though, particularly when she sees her friends. Unfortunately she is still not sleeping well and wakes on average 3 times a night. This lack of sleep is likely to be the cause of some of her low points, as apart from the morning lengthening and pin site cleaning, I don't think Ava is in any real pain (which is good).

1cm down. 4cm to go!

Life at home

We have finally been discharged from hospital.  We asked for this to happen as Ava was not sleeping well on the ward. It's great to be home and Ava seems more comfortable in more familiar surroundings. She is managing to get around (albeit slowly) with her zimmerframe from room to room.

She still has a few tearful episodes a day which tend to be out of frustration and the general feeling that 'this is unfair', but they are becoming less frequent.  We do know from the consultant and nurses that this is all part of the lengthening process. There will be days when Ava is in better spirits and those when she is quite low - sometimes out of pain, but more commonly frustration and isolation (not being able to do what her friends are doing and staying at home more than she previously did).  At weekends we previously would have been out a lot with both of our kids, whether this was going to the playground in the park, to soft play or swimming (Ava's favourite). But this is not possible for the next 9 months, so we need to find other activities to keep Ava's boredom at bay.

We are slowly getting to grips with how our routine needs to be adapted and have found new ways of doing things. For those reading this blog who have a child who will be undergoing lengthening this is what is currently working for us:

Sleeping
Ava is sleeping in her own bed with her leg elevated with a pillow. She has to sleep on her back as it is impossible for her to turn on her side due to the weight and size of the frame. This is one of reasons why she isn't sleeping well as she is used to being on her side.

We were considering moving her room downstairs and buying a sofa bed as we were unsure how Ava would manage the stairs. However, we have discovered that a way to master this problem is for Ava to go up the stairs on her bottom with either Simon or I holding her frame up. The same applies for  coming down the stairs.

Some may prefer not to do this, but we felt it was important for Ava to be in her own room and for us to be on the same floor as her (this is particularly useful as there has been quite a bit of night waking so far).

Washing
As I've mentioned in my earlier posts, it is only possible for Ava to shower once a week during the cleaning of her pin sites. She is not allowed any baths for the duration of the treatment as this increases the risk of infection as you are in effect sitting in your own 'dirty' water.

Cleaning of the pin sites and showering is pretty traumatic and involves lots of crying. Thankfully we only have to do this once a week. The cleaning of the pin sites took the nurse 30 minutes in the hospital, but took Simon and I nearly 2 hours. I doubt I'd make a very good nurse, but hopefully as the weeks go on I can beat that time.

Going to the toilet
Ava can manage this on her own with the use of her zimmerframe - which is good news. But does need help re fastening her knickers as these now have buttons down the side (not an easy task while standing on one leg!).

Affect on other siblings
This is quite tough as invariably Ava has the majority of our attention. We have a 2 year old  so have to devote time to him too. The test will be when Simon returns to work when I have both kids on my own (you obviously can't push a buggy and a wheelchair simultaneously).  Luckily I have my mum nearby and some good friends who have said they'll help out.

Lengthening
This has to be performed daily and we find the best time to do this is in the morning. We give Ava some paracetamol and then turn the various struts about 30 minutes later. I do the lengthening and Simon distracts Ava as much as possible. It shouldn't yet be too painful, but I can tell Ava has some discomfort by her reaction and reflex. Hopefully I'll have some better tips on what to do as the weeks progress.

For more information on how to cope with a child undergoing lengthening you can visit www.steps-charity.org.uk.  STEPs is a charity for people born with lower limb conditions.  They have a booklet for parents that provides information on caring for a child with an external frame/fixator. I found this to be really useful in informing us on what life will be like for the whole family, plus advice on what you need and ways of coping.

4mm down.  5.6cm to go........

The lengthening begins......

Today the first lengthening began. We have our program (see photo below) which tells us what we need to do daily. There are 6 struts on the frame and we move these according to Ava's prescription. These open the bone by 1mm per day. We were initially told that the lengthening would achieve 1cm per month, but Ava's program will be quicker than this as she also needs the bone rotated. The procedure will still take 9 - 12 months, but the length will be achieved quicker. The leg will remain in the frame to help it heal and become stronger.

During the 9 months we need to see the consultant fortnightly so he can take x rays and monitor the bone growth and Ava's general progress. They need to ensure the bone is healing and that it doesn't bow (which would cause further complications).

This first lengthening was thankfully pain free. It starts to become more uncomfortable as the bone grows, as the muscles and tendons connected to the leg aren't developing at the same rate which can cause spasms which are quite painful. We'll need to take each day as it comes and where necessary give Ava pain relief beforehand or perform the lengthening twice a day (so the increase in strut changes is more gradual).

I know we only achieved 1mm of growth today, but it makes us feel more positive that this is going to be worth it. The only downside of today was that the consultant is slightly concerned about Ava's foot. Prior to the frame being fitted she wore a splint which kept her foot in place (following her previous operations). As she is now out of the splint the foot is staring to turn inwards again, so we were told that she may need the frame extended so another ring is attached to her foot. Unfortunately this would involve another operation and hospital stay during this process. It's not definite, so we feel we have to forget about this for the time being and cross that bridge if and when we come to it.

1mm down.  Another 5.9cm to go!

Day 5 and pin site cleaning

Over the past few days we have been shown how to clean the pin sites on Ava's leg. There are 18 in total (which all go from the outside to inside of her leg). Although this is a large number of open wounds, with correct care we're hoping to prevent any germs from entering her leg which would result in an infection.

The nurse in charge of lengthening took us through the process on Ava's leg. It takes about 30 minutes and has to be performed weekly. This is then the only time Ava can have a shower ( she's not allowed baths as you're sitting in 'dirty' water).

Ava did not react well to the cleaning and pretty much screamed the ward down. Although this process does sting, Ava's reaction was more shock than pain. This is because the cleaning involves removing the pads that cover the pin sites, which make the entry into the leg very visible. As the operation had only recently been performed the pin sites were quite bloody, and Ava was shocked (hence the reaction). The nurse said her response was common and that it will be easier when we start to do it at home (fingers crossed!).

Ava has also had an X-ray of her leg. This will be used to calculate measurements of the leg which will then be fed into a computer by the consultant to calculate Avas's prescription for lengthening. Each case is obviously different and we have a specific program for Ava's leg. This will be to correct the twisting (tibial torsion) and lengthen (fibula hemimelia) by 5-6 cm.

 I find it absolutely amazing (and am thankful) that this type of procedure can be done.  If Ava's leg was left as it is the difference in length would continue and there would come a time when she simply wouldn't be able to walk.  This is why the decision to undertake lengthening was a no brainer for us.  I know it has been and will continue to be hard for Ava, but it will be so worth it in the end and something we know she'll thank us for when she is old enough to understand.

2 days post op - the frame is on

The past 2 days have been incredibly hard. Although Ava has had several operations and hospital stays before, the impact of this operation has hit her (and subsequently all of us) hard. We were told that having a frame fitted has a huge psychological impact on a child, but I presumed this would happen later after discharge from hospital when Ava realised she wouldn't be able to do certain things she did before.

I know it's still early days and she just needs to get used to the frame on her leg - the weight of it, discomfort and what it restricts her from doing. At the moment she is very tearful and perhaps because of her age, she is very aware. She's made lots of comments such as 'Why are you doing this to me', 'I hate my stupid leg and foot', 'Why have I been born like this'. To date Ava has never said anything like this, even when she has been in hospital before. I suppose it was always inevitable, but it is very difficult to find the right words to respond that reassure her and make her feel positive.

Thankfully the wonders of new technology has been a godsend. The best distractions involve listening to One Direction or watching Jessie on the iPad.  Ava's been bought lots of iTunes vouchers from friends which I'm sure will all be spent by the time we leave hospital.

The physio came today to show Ava how to use her walking zimmerframe. This will be used to keep her more mobile in the home. She was surprisingly good at it which is great, as the more mobile she is the better. The wheelchair will be used when we go out.

I know as the days go on she'll hopefully get more used to everything, and we'll find our own ways of doing daily things like dressing, washing and going to the toilet.

On Monday we will be shown how to clean the pin sites on her leg, which is how the frame is attached from the outside to inside of her leg. These will have to be cleaned once a week for the 9 months to try and minimise the risk of infection as she has in effect 'open wounds' on her leg. She'll be discharged with a large supply of antibiotics so I can prescribe them to her at the onset of an infection. The hospital will teach us what to look out for, but this generally involves a high temperature and a highly inflamed pin site.

On Wednesday the lengthening will begin. We will be shown how to turn the struts on the frame to pull the bones apart so new bone can grow. More to follow on this next week.

2 days before the op/Before and after

It's 2 days before Ava's operation to have her bone broken and the frame fitted. We're feeling nervous and I'm sure Simon and I won't get much sleep over the next few nights. The good news is that Ava seems currently unphased by everything and I'm sure will sleep like a baby. It's amazing how resilient kids are, and its the parents who constantly worry.

We need to be at the hospital on Thursday at 6am, as due to Ava's age and the length of time the surgery takes, she will be one of the first procedures performed by the consultant that day. It will take about 6 hours so I'm sure I won't be updating you all with posts for a number of days, at least until Ava is recovered from the surgery and has acclimatised to the frame on her leg.

Ava should be in hospital for 2 weeks and during that time Simon and i will take turns to sleep on the ward.  The lengthening procedure won't begin for at least a week. We'll then be given our programme and shown how to turn the various screws and struts to open the broken bones, with the aim of new bone growing in between. The consultant hopes to achieve at least 1 cm a month.

I'm going to post images so Ava's progress can be tracked. The first on this post are 'before' shots. Let's hope we see huge improvement from these pictures as the weeks progress.

Introduction to the blog and Ava

Hi Family and Friends

I have decided to write a blog about Ava's leg lengthening procedure. There are a few reasons for this. Firstly because this is probably going to be one of the hardest things she ever has to go through in her life ( she's only just 6!) but I know she'll be brave. Secondly because I hope this blog is able to help another parent or child who will have to go through lengthening, and thirdly as I feel that it will be cathartic to write down what Ava and our family go through during this time so we can look back when hopefully the condition of Ava's leg and foot have improved.

To give you some background, Ava was born with various congenital deformities to her right leg and foot. These include talipes, an absence of foot bones, tibial torsion and fibula hemimelia. Ava has had numerous surgeries on her foot, but this will be the first on her leg. Her leg length difference is currently at 6 cm but is predicted to be between 10 - 12 cm once fully grown. This is the first of 2 lengthenings to try and reduce the difference.

We have been provided with information on the lengthening procedure by the hospital.  We know that it's gruelling, but that it does have a high success rate. The whole process will take between 9 - 12 months and we hope to achieve growth of about 5 cm, which would reduce the difference to 1 cm ( fingers crossed!).  During this time Ava will be non weight bearing so will have to move around in a wheelchair and hopefully (if she can manage) a small zimmerframe. As Ava will need help going to the toilet, dressing, getting in and out of bed and moving I have taken a sabbatical from work to care for her. She is unlikely to attend full time education during this time, so her school have arranged for a few hours of home schooling each week.

Ava has received some counselling from the hospital to help her prepare for lengthening and she has met several children who are currently undergoing the procedure and have frames fitted. We  have also been trying to prepare her as much as possible by showing images of the frame that will be fitted to her leg and encouraging her to help buy equipment/items that she'll use during the time. She has picked out a pink beanbag to keep her leg elevated in the car and some cushions for her bed (again for elevation at night).

As Ava will be unable to wear her usual clothes during the process as they will not fit over the frame, we are having some track suits and underwear altered. The guy in the dry cleaners thought I was mad as I explained that I needed him to put buttons down one side of her knickers and Velcro down one side of the track suit bottoms. Anyway lets hope it all works out.

I'm signing off now as I feel we are as prepared as we're ever going to be for this. We are all incredibly nervous about the surgery itself ( 6 hours) and then the whole lengthening process that follows. But it has to be done and I'm sure Ava will be in a much better place afterwards.

Nicole x