Saturday, September 30, 2006

Rediscovering a social life!

Hooray, due to the fact we were supposed to be spending this week in Great Ormond Street, I actually managed to find some time to get some solid hours of work done, rather than snatching opportunities here and there, and, even better, remembering that it is really nice to talk to friends and meet people!

I have to apologise for being really rubbish at updating the blog this week though so I am going to have to go back to this time last week again. Hope spent last Saturday at a sleep over party so Ellie had some time for "mummy time". This was very well timed as the funfair had arrived just down the road. Ellie and I had a great time on the simulater and twister, eating candifloss and hotdogs and watching a pretty impressive firework display. It is very rare that we have these opportunities for one-to-one time and we both really appreciate it. Hope are planning an evening together soon. That one will probably be a little more cultured as Hope's is currently reading her way through Shakespeare re-written as introductory stories and is very keen on seeing a play for herself. She is also desperate to see a West End musical so we'll have to see what we can do!

Sunday was a big day for William as he started Sunday school. This is the first formal group he has been a part of and it will take some time for everyone to get used to his needs, especially the frustration and agitation that can come when he is overwhelmed through not being given sufficient time to process each individual piece of information he needs to react to. I will be staying with him for the time being but we plan to train enough people in basic Hickman line safety and pump alarms etc so he can have a one to one volunteer and I can spend some weeks in church for the whole service. He really is becoming quite the grown up boy and starts at the "Opportunity Playgroup" this week for 2 afternoons a week. Again, I need to stay as there is no nurse on site but will be in a parents room rather than with him. It will be so good for him to mix and play with other children and he wil get his speech and language therapy and occupational therapy there too.

One thing he will relaly enjoy at nursery is art and craft - he loves painting and sticking. He was making a really funky frog on Monday and ended up giving himself a rather punky look. This did not wash out with baby wipe so William was quite a scene on the school run home. The girls were really disappointed that I washed it all out in the bath!

On Thursday, I met Jo. Jo's little boy, Daniel, sadly died of complications following a liver and bowl transplant. He was a gorgeous little boy and you can read more about him at (I still haven't learned those hyperlinks!). Jo and I had chatted on the phone but had not met. We had a lovely lunch together and I quickly felt I was making a new very close friend. After taking Jo to the running shop to get her running shoes, oh yes, she is another who can testify to the addictiveness of beginning with this sport, I picked up the girls and rushed to swimming lessons. There I chatted with Mechelle, another Mum I have met through her daughter and William having the same buggy. it is amazing what a close bond is struck up very quickly when two Mums, who have children with similar medical or special needs, open up and share their experiences, heartaches, hope and fears. Mechelle is moving up to Scotland today but we will stay in touch and saying goodbye was saying goodbye to a friend, even though we only met a couple of weeks ago. Later that evening Barbara, a friend fomr church came round for a chat. It was an amazing day as it has been ages since I have spent so long talking to friends. When things are very hectic and stressful, I am so tired when I finally finish everything that phoning a friend for a chat or to arrange to meet seems just too much. I really must make more effort though as it is so important. Paul also managed to hobble out (and fall over in spectacular fashion!) with his friends on Thursday. I'll let him tell you all about that on his blog (linked on this page). I did remark on the trend that seems to be emerging when he has a night out...

Today, we decided to make the best of the sunshine (between the showers) and met Jo and her son Alex at Crystal Palace Park. Hope had capsized her dingy 5 times today as she has progressed to the "Topper" which is a bit harder to control than the "Opy" she has sailed up to now. The poor thing was drenched and her face was a picture when I told her of the plans that had been made whilst she was on the lake. Even her spare clothes could have been rung out. A quick trip to a charity shop en route soon had her comfy again without breaking the bank! She will be using wet suits from now on... It was really nice to chat with Jo some more and the children had a great time. Last time William played on these swings he was on oxygen so it was lovely to see how far he has come. He had a great time walking around (with me running after him to steer him away from the swings and roundabouts). The girls held his hadn as we walked to the swings and it was so lovely to see them together. Ellie adored Alex and really enjoyed playing with him. I did get a couple of comments from other Mums about Williams unique little walking style. Both were very supportive and encouraging though as we watched William fall down adn pick himself up and wiggle around some more.

Next week is another busy one with the physio and occupational therapist coming round to see how we can brace his pelvis to make it more secure. We also have to sort out his buggy/wheelchair as he continues to slump in the current one but, more worrying, is that he is now tipping it back when he gets agitated, especially when he has his TPN on the back as the bag is pretty heavy. We have a couple of other appointments and William starts the playgroup so we have a new routine to get used to on Wednesday and Thursday.

Well, this has turned out to be a very long entry so thank-you and well done if you are still with me! There is a lot more I could have said too. I will be much better organised next week and will blog more as we go...

Friday, September 22, 2006

Another hectic week!

Well, it has been another crazy, hectic week - hence the first post since Sunday! On Monday, we went back to Chelsea and Westminster to have William's jejunal tube reinserted. This turned out to be particularly tricky as his stomach was well and truely refusing to let anything through (the huge amount of gastric aspirate pouring out of his gastrostomy was testimy to that!). The tube just would not go through the stomach into the jejenum. At one point it ended up folding back on itself right up into his oesophogus - the poor thing was so distressed and poor Grant, out gastro specialist nurse, was really upset at how difficult it was being for William. Eventually, we got it in place. We then rushed home to get Hope to her first secondary school open evening - for once William's TPN and drugs had to be done late when I got back! This was a lovely school and Hope's favourite - the whole issue of school applications and selections will, doubtlesly, form a topic for a blog entry later in the week!

On Tuesday William's CHASE nurse came round for a few hours so I got my first day off TPN since July - hooray!! This was great timing as Hope and I were off to another secondary school.

On Wednesday morning I went to an introductory session for Makaton sign language. This system of learning signs with language is really helping William's development. He only knows a few signs so far but these are helping him to learn to express things such as "please" to ask for something and "more". I am trying to learn enough to sign and speak to him as much as possible to help his language development.

William's physio came round on Thursday to bring William's new Piedro boots. They are absolutely great and look like trendy Timberlands. They help his walking a little bit but he needs a lumber support to help stabilise his pelvis. The physio and OT are coming on a joint visit to fit this in a couple of weeks. We also had our Portage session and began the lengthy task of assessing what he can and can't do in order to tailor his programme. Today, the OT came with his new chair. This is also great as it supports him really well. We are hoping to be able to do some work to get his hands working together more now he is better supported. We may have to try hand splints to stop his fingers bending back too much. He does need a wheelchair with similar trunk as he still has a tendency to fold in half in his buggy. We will sort all this out in the next few weeks but we really are getting there with his equipment and therapeutic needs.

We were all set to go into GOSH on Monday with transport booked, TPN arranged to be delivered there, Paul's Mum ready to look after the mechano leg and children...until 6.00 this evening when the registrar called to cancel his admission again! Apparently, the only doctor who can do the test he needs is not there next week. We don't really understand why he was booked in then, or why it took unitl 6.00 the Friday before to realise the problem as we had the letter a month ago and phoned several times to clarify information. Apparently, the doctor we need has full lists until the new year so Wiliam won't be going in this year! The annoying thing is that we have a lovely new integratged gastrostomy and jejenostomy we were hoping would be fitted while he was having another procedure. This would have been so much more comfortable for him and he wouldn't need to go through the jej tube being reinserted so regularly. It is also very necessary for him to have one, neat tube to fit with his pelvic support. I am hoping Chelsea and Westminster will be able to fit him in to have the tube changed soon. Oh well, at least next week is a calm week though as I have cancelled everything thinking we would be in GOSH!

Sunday, September 17, 2006

Meeting of Angels

Well, we got through the week with nothing worse than a bit of extra weariness and tension in the inevitable arguments between Paul and myself during these challenging times. William went to see his gastro consultant on Friday. It was a bit of a hard appointment as I could tell he was noticing William's physical and cognitive limitations more. Mind you, William does have a tendency to retreat into "William land" staring up at the lights and shaking his head around to see the patterns it makes or, worse, get very agitated and bang his head on his pushchair when he is a) somewhere unfamiliar or b) over stimulated. A busy paediatric waiting room is both so they don't really see the best of him! We are fast learning that William can repond very well to things but needs time to process what he is experiencing and then form his repsonse. Hence, he will say goodbye to someone when they are already half way up the street and said goodbye to him several minutes ago. This is fine when he has one task and is given time and space to process it but when he is bombarded by several things such as several things to see, hear, touch...all at once, the time and space he needs to preocess each individual task gets into one huge busy Picadilly Circus style jam and he either retreats or gets very agitated. We have also found he gets very agitated if he his expectations change. We were walking home from taking Hope to the sailing lake on Saturday morning and walked past the tram stop we use to go home from school sometimes. It took him a long time to stop banging and shouting, much to my embarassment in the Co-op! This is, apparently, common in this kind of syndrome and due to problems in the neural connections so everything takes that little bit longer to travel and, in some cases, such as his intestines and part of his pelvis and feet, doesn't happen at all. As I have said before, time will tell what he is able and unable to do.

Unfortunately, we were unable to get his jej tube in as our gastro specialist nurse, the only man it seems able to do it in the entire world, was off sick. I am glad though as I would rather we wait until tomorrow than have a doctor think he/she can do it, only to put him through hours of pain and discomfort and still leave with no tube - this has happened before! The good thing about this was we had some time to pop down the road to the Brompton and introduce my little angel to THE Angel...

William was slightly shy around the tubes and drains that poor Emily is on at the moment but soon settled down into his usual sociable and entertaining self. Clearly Emily's room was much more calming than the clinic. It was lovely to see Emily again and introduce her to William. We tried to get some pictures, taken by Em's lovely friend. William eventually turned round but Em and I were so busy encouraging him to look at the camera that we forgot to do so ourselves! He was in very wriggly mood as he had just come off his TPN drip so wasn't really up for being held down for a photo.

This week is going to be just as mad, if not more so! We are hoping to get William's new buggy/wheelchair assessment in before GOSH next week. We also hope the physio will come with his Piedro boots and to discuss his pelvic bracing. He has portage (pre-school education support) and I have a half day Makaton (sign language) course. Tomorrow, we have to go back to Chelsea and Westminster to have his jej tube in. This would all be hectic but just about managable, however, on top of this Hope and I have 3 secondary schools to see in the evenings. So, there will be much rushing between William's stuff in the day to Hope's evening visits, with TPN and IV drugs to fit inbetween! Tomorrow is the worst as we are at the hospital in the late afternoon, an hour trip home, TPN and drugs to do and a school to get to for 7!!! I think I really do need to morph into Wonder Woman to get all that done on time - maybe I should practise that spin!!!

Thursday, September 14, 2006

MRI Madness

Today has been a day off the week of mass medical appointments. However, it was just as busy as I caught up with work and housework. William had his MRI brain scan yesterday and what a palava that was! His jej tube was removed on Tuesday and I had already highlighted the fact that he would be unable to take oral sedation and, even if the tube was there, it is unlikely he would absorb it anyway. His consultant had planned to use sedation that can be absorbed through the mouth. However, no-one else knew of the plan! Everyone was nervous as his notes include a recent sleep study showing desaturations. This, together with the fact no-one had given the form of sedation I was describing, led the nurse on the day ward and the radiographer to conclude that William was not compatable with MRI at our local hospital. I was so frustrated as his tube had been removed specially and putting it back will involve at least an hour, nearer 2, of unpleasantness and discomfort for him. The radiographer said he was going to refuse the procedure and write to the consultant. At this point, I insisted that he speak to him to see if the stuation could be resolved. His consultant said to the nurse he didn't know where the concern about desats came from, I overheard her tell him on the phone this was from a letter he had written to William's gastroenterologist and read the quote to him. This was more than mildly amusing! In the end, they agreed to do it if the consultant gave the sedation and remained with William throughout. So...he came and gave the sedation. William became a little wobbly but no he gave more...still awake...and more...yep, you guessed! Eventually we decided that the sedation was not working (surprise surpise!) He probably absorbed some through the mouth but did swallow some so it looks like not enough was absorbed to actually make him sleep, despite 3 doses! He was fighting the sleepiness he did feel. So, I had to get into a gown and go with him into the scanner. This was most uncomfortable and claustrophobic as there was barely space for him, let alone me lying beside him with my head on his chest and my arms cramped up with one stroking his face and the other up against the edge of the machine. We whiled away the time singing to immitate the noises it made. Surfice to say, the images were not great and the whole thing may have to be repeated...under IV sedation at Chelsea and Westminster of GOSH!

Since the scan William has leaked copious (even more than usual) amounts of aspirate from his stomach - so much so he has had to remain on free drainage to cope with it. He was really uncomfortable all afternoon yesterday. His gastro nurse specialist wonders if GOSH will try and give him a little feed into his gastrostomy to see what happens. It seems nothing much has changed and they will soon see what happens...William gives it all back again...with interest! His nurse also suggested that William may yet go to Birmingham for transplant assessment if GOSH agree this is the only solution to his intestinal failure. If so, they may well conclude that he is too complicated for transplant but at least he would get assessed individually and the pros and cons weighted for him, rather than a generalised decision. We will know more about the next stage after we have been to GOSH the week after next.

Monday, September 11, 2006

Wonderful CHASE!

We have just returned from a wonderfully relaxing weekend at CHASE at Christopher's Hospice. It really is the most amazing place, you feel yourself relax as soon as you hit the car park and are never ready to come home at the end of your stay! We left on Friday afternoon and that was far from relaxing. The CHASE minibus came to get us with a volunteer as Paul is still, clearly, unable to drive us anywhere and I am unable. I picked Hope and Ellie up from school early as the bus had to be back by 3.00. When we got back, the bus was already there and I was far from packed and ready! Normally, you could just throw things in a bag and pop into town for anything critical and forgotton. However, Hickman line flushes and IV giving sets don't tend to be available on the highstreet. Hence, such rushed packing is HUGELY stressful. The poor volunteer driver was trying his very best to calm the situation though and we were soon on our way.

Paul and I were able to relax together in the tranquil sensory garden while the children played far enough away, on the trampoline and swings, to maintain the peace. This was the first "quality time" we have had together since Paul's accident on July 12th. William did pop over with his nurse from time to time. There is a lovely iron tree water feature that drips away as if in a light summer shower. William became fasinated with this.
When we were not in relaxing mode we had great fun in the pool together (Paul had to remain dry side but did take a few pictures) and William and Hope had great fun in the music corner. Ellie just loved having lots of baby dolls and pushchairs and fancy dress to hereselt in a big enough space to play lots of make believe and charm the nurses into joining in as only Ellie can. We did find time to make a paper bead necklace together in the art room. It's funny, for all their craving of William free "Mummy time", when they get the chance, both girls would much rather play with the nurses - after all, Mummy is always there isn't she, even if she is a bit busy. However, CHASE nurses have to be enjoyed when you can! I think this was particularly so this time as William has been home (give or take a couple of weeks here and there for line infections) for such a long time now and the girls aren't feeling so Mummy starved. I did offer to take them to Guildford Castle as it was free for British Heritage Day but who wants a castle when you can have baby dolls and a big garden and corridoors to push them around, lots of nurses to charm and a corner full of musical instruments and a magic piano that lights up to show you how to play the classics!

We have never been to Christopher's at a weekend before. We are usually the only family there, with the other children alone while parents take respite on holidays. It was really good to share it with other families. it was lovely to sit and eat meals together and share experiences. It was also interesting to see how each family made the place their own and got what they needed from it in different ways and without getting in the way of each other. Sometimes, for us, this is all about the girls and I having fun and bouncing on the trampoline etc. There was plenty of that this time but the main need was for Paul and I to have time together as there is precious little of that by the time I have done everything William and the girls need, fetched and carried for Paul, cooked meals, cleaned up...etc... The only thing I didn't get was a break from the TPN. This is so specialised that there are not yet enough staff trained to be able to do this when we are there.

Today was a slam back into reality as we kick of the busiest week so far for William. We had an opthamology appointment today which went every well, although we do need to get William in his glasses more (at the moment they are at the optician though as they were a casualty of the weekend!). Tomorrow we have Portage and Grant, out gastro nurse, to take out William's jej tube, Wednesday is the MRI and Friday clinic and a new jej tube. Thank goodness for Thursday!

Wednesday, September 06, 2006

Ministry of Funny Walks

Well, the school run major juggling act is so far so good! Yesterday, we even managed the mile long walk to school in the morning. The clue has been to leave William in the cot with books, dressed and ready to go, until the last minute and then put him straight into the buggy. The girls are enjoying the "Weetabix week" as in the advert so are having me dream up different toppings each morning. This has been greatly helped by the family organic box we are getting again. We have done plain with milk, apple, banana, yogurt. Tomorrow is strawberries. With William in the cot, the girls get a bit of "Mummy time" to discuss the day ahead too. Quality "Mummy time" is in very short supply at the moment and the girls, especially Hope, are feeling it. At least they will get some at the hospice at the weekend while William is being looked after.

Ellie is very excited about being in the juniors now. The girls are at the same school at the moment and, today, the problems with that began to emerge with each running out of school telling tales of each other's faults in various playground squabbles and fallouts. They were swiftly told to keep their noses out of each other's business. Let's hope the novelty soon wears off. I'm sure it will as Hope, in year 6, will soon tire of year 3 playground politics.

Meanwhile, William had his orthotic appointment today. He had is walking analysed and, as in the sitting posture, it seems the main problem is hyperflexibility and low muscle tone, globally throughout his body but particularly in his lumbar and pelvic regions. They are going to give him Piedro Boots to help him feel more stable and supports for his lumber and pelvic regions. He has a very strange, wobbly gait and walks in his toes a lot, partly because he has a foot deformity (ped cuvus?) but mainly because he has developed this is a strategy to make his legs feel stronger. He is such a little fighter. Many children woud just not walk if they felt wobbly and unsafe but he is developing ways to make himself feel a bit better - all be it ineffective in some ways as he keeps falling but the way he walks is very funny. However, this is causing his achilles tendons to tighten. He falls so much when he is tired we can only let him walk for short periods and may be advised to use a soft crash helmet when he is particularly wobbly. He managed several falls, including a spectacular thump, putting his teeth through his lip, while being assessed.

Still, he gets around as this picture of him setting the world to rights with his special friend, Adam, shows.

Monday, September 04, 2006

While Mummy was away running and making friends...

... the children were at the CHASE family fun day with Paul's Mum and Dad.

They had a fantastic time. The highlight for Ellie was meeting up again with her special friend who came with us to Legoland and has played with Ellie at the sibling day. They really are like two peas in a pod. Hope's highlight was the chocolate fountain! As for William, well, there was a miniture steam train so need I say more. He enjoyed riding on it and got very upset when he was removed from watching it, instead making a beeline back at every opportunity. He also met Piu, a CBEEBIES presenter who used to be Poo from the Teletubbies. I don't think he recognised her but he has a lovely signed photo for his collection.

Following such an exciting day yesterday, I found myself registering for Losely 10K, a run in aid of CHASE so my entry fee will go there which is great. I have absolutely no idea if I can do that but have 2 months to find out, as it is on November 5th. It is far too soon to do another sponsored event but if anyone reading this didn't get round to sponsoring me for the Hydro Active you can still use the Justgiving page ( - I really must learn how to do those hyer links) through October. Any little extra helps make smiley faces like those in the pictures above. I also decided today to join a running club. Well, if I am going to keep at this why do it in the cold and dark alone when I can finish in the clubhouse with a nice glass of wine, making new friends. I am realistic though and know I can only do this on tip top days when my lungs are really behving themselves and not at all tight and twitchy. I am so inspired by what Emily achieved yesterday with her tiny lungs and know I can make more of mine, cautiously though. I also find running such an amazing way to get rid of adrenaline caused by stress. After all, it is there for fight or flight! It also helps me think things through. Whether or not it is at all possible to keep going through the winter coughs and colds I don't know - time will tell.

Another big piece of news today is William is finally going into Great Ormond Street for 5 days on 25th September. This is not for the big tests he was due for but it will get him on their system which is a start.

Well, tomorrow is back to school. I don't know how I will manage William and Paul and school run. That will, no doubt, feature on tomorrow's blog (see Charlie - back to normal service here!). William has speech and language therapy tomorrow and fittings for his boots and foot supports on Wednesday. We are off to CHASE on Friday for a weekend of R and R - can't wait! This is especially good timing as next week is a crazy one with Opthamology on Monday, Grant, the gastro specialty nurse coming on Tuesday to take his jej-tube out (as it contains metal, not good in an MRI scanner) brain MRI scan Wednesday and Chelsea and Westminster for clinic and insertion of a new jej-tube on Friday!

Sunday, September 03, 2006

Hydro Active Challenge 2006

The hydroactive challenge day finally arrived today. Last night, I went out for a meal with some of the Emily's Angels team. It was gerat meeting people last night and today, especially people who I have got to know very well through the message boards and blog. It was fantastic to get out and have a nice evening out. I spent the previous 3 days working William's TPN time gradually earlier so I could get ready, put him up and get out on time. So, it can be done!

What was even more amazing is that I managed to get William up and ready to go to the family fun day at Chase and myself up and ready before 8.00 to be on my way for the Hydro Active. It was a lovely fresh morning and I felt full of excitment and anticipation about the challenge I had set myself of running the race without having to walk more than a few seconds to get my breath. One thing I have manged to get nailed during the training is slowing the pace right down rather than walking to take my inhaler and to take it early as soon as the chest tightness begins. The trouble with asthma is that no two days are the same and, while on one, I may find an adrenaline fueled run not too hard at all, another may find me unable to even run for a bus. In the gap between high pollen counts and winter colds and chest infections, today felt good. The second, and most important reason for the anticpation was meeting people who have become such good "e-friends". I was looking forward to seeing those I had met the night before again and I was especially looking forward to meeting Shadow and Emma for the first time. I was also full of excitement for Emily and so hoping she had woken up well and ready to walk over that finish line (I don't know how to do fancy hyperlinks so amd going to have to resort to giving you the address to Emily's blog, together with a huge recommendation that those of you who don't already read her blog look at today's entry to read her inspiring and emotional account of her day today -

There were already some charity running vests to be seen at East Croydon station and the concentration of these increased the closer I got to Hyde Park. I walked from the tube station with a lady who has run many Marathons and runs for Chase and raised over £25 000 through her efforts. I felt like a child in a new country in comparison to her experience as we walked into the Hydro Active compound. I really enjoyed seeing all the people milling around in their kaleidescope of running vests and T-shirts, the charity stands, banners and balloons, hydration stations etc. My companion agreed how exciting each event is and how addictive it can be. I must say, I think she could be right.

I was worried that I might not have been able to find the other angels as they would be meeting at F and Chase at C - it turned out that the two charities were placed right next door! I bobbed between the two trying to meet as many people as possible.

The Chase Team (part of them - another picture was taken later when everyone was here)

Emily before the race, conserving energy and being incredibly still and quiet for an excited Em!

Finally, we were off. I was absolutely determined to run to placed myself at the back of the joggers. There was a bottleneck at the start so it took a very long while to get into stride. It was incredibly painful on the knees to run so slowly. The hardest bit was at 3K when the pain was beginning to bite and there was still a good chunk of the race to go. It was still hard work at 4K but, by then, there was no way I was going to walk having got so far and with such a little way to go. There was a hill towards the end - cruel! I still managed to keep going and was running on neat adrenaline by then. It was an amazing feeling to turn the corner and see the finish line. I even managed a sprint (well, sprint for me) and did not need the encouragement from the tannoy to wave and smile as I approached it. I had done it, reached my challenge of running the whole 5K and in, what I was later told was a respectable time, of 30 minutes. I was sad not to have seen Emily cross the line and was hoping to get back and see her. My original plan was to walk with her and the other angels but, somehow, I needed a personal challenge at this point in time and, I must say, the training has really helped with the stress. We have been living on adrenaline lately and "flight" is a much better way to get rid of the buld up than "fight" - Paul will certainly second that!

Emily shortly after walking 550 metres to cross the finish line!

Emily with her trainers (physios) after the race.

Lainy, Suzie and her sister, Livvy, Gill and her daughter after finishing the challenge.

After the challenge was over, we had a lovely picnic in the park where we got to know our "virtual friends" for real and relaxed in their company. The sun was shining and it really was a special time I will certainly never forget.

R-L: Livvy, Lainy, Gill and me

Emily and a very special angel

Emma (Emmie) being a very funky angel!

Andy being a fantastic sport and raising even more money for the CF Trust

Charlie and Abigail

Emily with the 'CF Mums" L-R: Lainy, Livvy, Shadow, Emily, Gill and Suzie

All in all, it was a fantastic day and I am suitably tired but for all the right reasons! Hope, Ellie and William also had a great day at the Chase family fun day with Paul's parents (while Paul had a nice quiet day at home alone) but that is a whole new topic for tomorrow as I'm sure that is enough of my ramblings for today and if I keep writing and add any more pictures I think this Blog will crash!