Sunday, October 29, 2006

Small world...

It has been another busy week. I really should get back to the habit of updating this blog every day, or at least more often than once a week. It was half term so no playgroup for William and no therapists either. That all kicks off again this week with physio, OT and Portage, as well as frst day back at playgroup on Thursday. William still can't cope with not being able to see me, or, at times, even touch me at playgroup. He is so happy to play with other people at home but, once out, is such a Mummy's boy. Thye physio and OT are coming to assess him for his pelvic support. His walking has become visibly more "unique" over the last few weeks and he has few more bumps and bruises than before. He can still get around though, and with much speed and vigour and continues to impress people with his sheer determination. People who haven't seen him for a couple of weeks are telling me that he is more jerky and wobbly. He is due to see a neurologist in a couple of weeks and I am really looking forward to seeing what she thinks. I say "due to see" because there is some confusion here. William saw his community paediatrician a couple of weeks ago, who referred him to the neurologist who holds joint clinics at our local hospital. The next day, we saw our local hospital paediatrician who referred him to the neurologist at Chelsea and Westminster. So, on Wednesday, we got an appointment to see the neurologist locally and Thursday, a letter from the community paediatrician to cancel the referral in light of the other one - are you still with me? Well, I called the hospital and they still want to see him at the joint clinic. Well, we'll see!

This week has been a busy and active one for Paul and I. The girls have been at their Dad's all week so we have had a bit more time to play with. I made it into the BLISS office for a day and got a lot of work done at home. I also found the time to run the Croydon 10K on Sunday, by coming home ahead of the rest of the clan from the hospice. I did it without any walking and in 56 minutes. It was a hilly course so that is not at all bad for a first attempt. I was pretty tired at the end so was glad there was no school run in the morning! One advantage of Paul being home so much at the moment is that I have had the freedom to build a good foundation with the running club and get out enough to feel part of it and make friends. This will be a lot harder when Paul starts working evenings and Sundays again. I did a cross country league race yesterday. That was really hard going and I trailed behind all the more experienced club runners. There were two laps and I found it really hard to breathe on the first one and was about to give up but managed to get it together and began to close the gap on the runners in front on the second lap. MYy performance on the first lap was not helped by my desperate need for the loo (nerves). I was holding a bottle of water and could not forget about it with that swishing about in my hand. Every bush I passed was assessed for privacy for a wee and, the more uncomfortable I got and the further behind I fell, the more I thought it wouldn't matter if I did stop for a wee. I'm glad I didn't though because what I didn't realise is that there were about 4 runners behind me! When I passed our supporters, I threw them the bottle and felt better almost immediately! Despite all this, I took 51 minutes for 5 miles cross country, which I'm told is pretty respectable as the effort is equivalent to 7 miles on road. I really like cross country because it is lovely to get off the road and into the "country", or as close as it gets in South London!

Paul has been able to walk about a bit, albeit very very slowly, on his crutches so we popped into Croydon a couple of times for a slow wonder round the shops together and a coffee. I also found time to meet up with my friend, Jo, for lunch on Friday which was really lovely. Paul joined us and it turned out Jo used to work with one of his best friends. On Friday evening we had a call from a family we were next door to in the neonatal unit to tell us they have moved just down the road from us...small world...unless you are trying to run or hobble about on crutches in it!

Friday, October 20, 2006

Mulling things over...

Well, this week has not been quite so hectic as previous ones. I actually managed a day in the BLISS office yesterday and had a most successful meeting with a group of doctors and nurses who are overseeing the research I am doing (won't go into this at lengths here!). When I arrived at the office, I was told by my manger that the boss wants to send me off to America as they are alredy implementing programmes of care for premature babies that we are exploring introducing and evaluating over here. My immediate reaction was excitment, followed by that heavy sense of "yes but how on earth could I work everything out that I would be leaving behind?" After a chat with Mum I realised that this is exactly what the hospice is here for and, not only would this trip be of huge importance to my work, it would do me a huge amount of good personally too. So, we can work something else and I will be telling them, yes! We have not yet left William at the hospice alone, I think I have always hoped this condition is somewhat temporary and we can do all the things we want to later down the line. However, with the addition now of wheelchairs and mobility problems, it is high time the girls and I looked to do some of the things we miss, like rock climbing (indoor with full safety kit!), rambling and camping. We will look to go on some kind of family adventure weekend to incorporate all these things sometime in the Spring.

It is interesting to mull things over and compare the impact of the path our life has taken on Paul and I. It is a similar pattern among other Mums I have spoken to as well. Mums seem to undergo the biggest changes in life. I have had to give up full time work and cope with a much smaller income. This has been a positive thing in many ways as I am there for all 3 children much more than I used to be and I am the one at the school gates in the afternoon to hear all their news as they come out of school. Friends is another interesting issue here. Paul's friendship group remains pretty much unchanged. However, alongside old friends, I have a huge set of new ones who I have met in relation to some aspect of my journey with William. Some at the hospice and other groups we are involved with, some from hospitals, others from message boards and still others just by word of mouth through various networks because we share something in common. It is often these new friends who I turn to the most for support, to share news and feelings, to discuss how I feel about the latest diagnositic theory or piece of equipment... When Paul had his accident, it was these friends who I knew would understand my context and how I felt about it all. There is an instant bond and this makes new friendships very close very quickly. This seems to be something that women in our situation seek more than men. However, at times, I can feel very excluded from the life we had before and that Paul still enjoys. Paul often gets invitations to events such as weddings and parties but the logistics of bringing the children, especially William with the restraints of TPN etc, it inevitably means that I have to stay home. Sometimes, I get the feeling people don't invite you to things when you are in this position because they just don't see how the logistics will work. It can get very isolating - another reason why the new friendships are so important. I have had this conversation with so many other Mums who all experience the same.

Another thing I have been mulling over is they different ranges of conditions and disease progression patterns. Since we were told that William's condition may turn out to be a degenerative one, I have wondered to myself what is harder - to have a child born with very limited physical ability that remains at a static level or to watch a child loose his or her function over a period of time? The first may enable you to get used to things but you never have the memories of that child running around and doing things. With a degenerative condition, you have to endure the agony of watching your child deteriorate in front of you, however, you have precious and happy memories of years that went by before. The saddest thing I have seen is a child who was OK but who had a tragic accident where a fall led to a blood clot on the brain. I think that is the hardest situation of all, suddenly, just like that a well child becoming profoundly disabled. Of course, this can happen to anyone at any time. This is why some disabled people in America term able bodied people as "currently able bodied" . This is why we need to enjoy every second with all our children and this weekend we are off to the hospice again to do just that!

Saturday, October 14, 2006

A very busy week (again!)

Well, this has been another crazy week. I spent last Saturday hunting down ways of keeping William warm and dry in his wheelchair. We had a hooded buggy cover from when he was small. As you can see in the picture, he is not overly impressed with being covered up by this but it is a very useful thing to keep to hand for a sudden downpour! Much better is a all-in-one waterproof suit with wellies. The chair will get wet but a very useful addition to the bag is the type of towel you use for hiking and triathlon - small, absorbent and light both when wet and dry. We managed to find some very thick fleecy trousers that we will use kind of as a "coat for legs" as he would cook indoors in them. The Disney shop had a sale on fleecey blankets so we got a very cool "Cars" one in electric blue with a red trim - very colour co-ordinated with "Charlie Chair". So, William is all set for any weather. The next thing we found was that any bag I carry in my hand or on my shoulder comes in very close contact with the wheels. A rucksack is the way forward and, luckily, Millets have some really funky ones, for children as well as adults so I kitted out myself and Hope and Ellie as well, as a softner to the fact they will have to carry their own things while out now as we have done with buggy baskets etc.

Having got so well kitted out we have been out and about a lot, mainly this week to hospital appointments, but we have also found time to get to the park and feed the ducks on Hope's sailing lake. Feeding the ducks is something his Charlie Chair enables him to do and he couldn't have done in the buggy because he was not strong enough to sit up straight in it. As you can see from the pictures, he can still run around and play on swings and all the things a toddler loves to do. He is just doing these things in an ever more wobbly way and falls over a lot. He also gets very tired. The chair is there to give him another option when he is a bit too wobbly, as well as giving him some independence when stuck connected to a 4kg rucksack of TPN!

We are just about getting used to being out and about with the chair. At first I felt very self-conscious, something not helped by the highly unsubtle sirens that sound as the bus drive lets down the ramp. These feelings are also not helped by the reactions of some people. Most are great and very helpful, but there are many others who will ask questions. This can be fine but the worst are those who pass comment such as "poor little sod", "well these days they can fix anything" or "but he is a lovely" - he is a very happy little boy, certainly not a 'poor little sod', 'they' can't fix anything and why shouldn't he be lovely! Another thing I hate is people stopping their conversation to talk about William, in voices perfectly loud enough for me to hear. This is something many of out friends at the hospice are going through at the moment as the children move from buggies to wheelchairs.

This week saw three hospital appointments. The result of two of them was to be referred to another two consultants, bringing William't total number to 8! He will be referred to an audiologist to check his hearing and to a neurologist. As I have mentioned, William is getting more wobbly when walking and waddles a lot. He also finds it increasingly difficult to sit up straight when unsupported. He also has some uncontrollable spasms when he is very happy. This is really cute, one of the pictures shows one of these little moments. He had a brain MRI scan recently and the good news is it looked OK overall. He was not still enough to see the fine detail. However, there does seem to be an element of deterioration in aspects of his physical development, particularly where his pelvis is concerned. His feet are still growing in a curve. This has led his local team to think that his condition could be a degenerative neuro-muscular condition, like muscular dystrophy. For now, we watch and wait and see how things go. He has all the right services in place and there is nothing more that could be done. It is clear that his final diagnosis is going to take some time yet. He is still very young and you often need to see longer periods of development to diagnose these kind of conditions. If things deteriorate any more over the next 6 months or so, he will have nerve biopsies to see if there is any evidence of degeneration. It is very hard having to wait for answers like this but we can fully understand that so many conditions can seem very similar in a child so young and the differences often come in disease progression. You have to give it time to progress to diagnose the problem. Another finding from clinics this week is that it appears William has shrunk two centimetres over the last couple of months, taking him completely off the centiles. This could be due to problems measuring a small wriggly child but could well be due to his posture. It will be interesing to see if he "shoots up" when he gets his pelvic support in a few weeks!

As for the rest of us, Paul continues to heal very slowly getting ever more frustrated with being stuck in the house. I don't think my recent running hobby hels that ;-). I went into the running shop for some shorts for a 10K run next week. This will be the first time I officially run for my club so have to be in kit - how strange for a girl who has always hated any sport that involved running! I often take William into the shop when picking up bits and pieces and, today, they said that they would like to support me in the fundraising runs I do for the hospice. That is really exciting. I am learning that when I have sufficient adrenaline I can keep going. When this is not the case my asthma kicks in and I just can't do it. I would love to do the London Marathon for Chase - would the adrenaline of the day keep me going (of course, walking a fair bit of it!)? The girls are very happy at the moment. They are off to a sibling support day with Chase tomorrow. William is very tired and hasn't slept in the day for a few days so it looks highly likely Paul and I will get a very rare couple of child free hours tommorrow afternoon!

Saturday, October 07, 2006

Jeans for Genes

Today was Jeans for Genes day and we decided to celebrate with a party! The girls invited friends round and they had loads of fun designing funky jeans outifts for paper dolls, as well as other usual party activities such as eating huge amounts of crisps and sweets! It was a great time to have fun and also raise awareness of genetic conditions. Earlier, Hope and Ellie talked about William and sold fundraising keyrings and mobile phone charms in their classroooms (although the school did not allow jeans to be worn or for the whole school to participate). In a way, this was nicer for the girls as they felt they were doing something special for William among their friends. In the meantime, William and I took the keyrings and charms to our local pharmacy and butcher who had agreed to sell them. The day finished with some friends round for some Mexican food and the "Are you a jeanious challenge!" Our night respite nurse is here this evening so she came early to join in. It was lovely to socialise with her as we are usually quick to bed to make the best of the rest (although we do share an interest in mindless TV such as Big Brothe and the X Factor, something Paul hates so I do often tarry a bit on bed time to gossip about the latest developments). Speaking od which, I really should be making the best of my night off nappy and bed changing, gastrostomy draining and pump alarm attendence and getting some sleep. Short and sweet tonight!

Thursday, October 05, 2006

Check out the wheels!

William got some new red, shiney wheels today! Check out his smart wheelchair! Again, what a grown up boy! We thought we were getting a mobile seating system, a bit like the chair he now has at home. However, after assessment and a long discussion with the wheelchair assessor we decided to for this self- propelled chair. He has some extra padding to support him and a harness. A special neoprene band has been ordered that can be used as a support for his back by holding it to the chair when he is tired. However, we have also been told to give him some times with just the lap belt to help him develop sitting skills. The plan is that he will now learn to self-propel the chair so he can have some indepence when he is on his TPN and when he is too tired and wobbly to walk. This is great for him and he has already started playing at it. The arms come off so he can reach the wheels better. By learning to self-propel, he will also build up and strengthen some of the muscles in his chest and upper body. We hope that this will, eventually, help compensate for his weak and wobbly pelvis, at least when he is sitting, as the top of the body can help pull things straight.

The chair has had some interesting reactions. A prolonged "Ah" is something we have heard the most. This has come from groups of secondary school girls, groups of Mums in the playground, woman at bus stops...all of which has stopped their conversations to exclaim. It is strange and also something I have always found difficult to deal with. He is cute, he is sweet and he looks very cute in his new chair! Strangers remarking on this is fine. However, I am only too aware that the day will come when strangers no longer think that his wheelchair, wobbly walk and spasms when he is happy and excited are cute, least of all his display of agitation. In only hope the cute phase lasts as long as possible and perhaps by the time it is over he will have developed a personality strong enough personality to be more dominant than his physical differences - somehow I think he is well on his way to that!

Growing up!

Well, William is being quite the grown up boy this week. He started Sunday School on Sunday and, today, had his first afternoon at the Opportunity Playgroup. This is a playgoup for children with special needs and he will get speech and language and occupational therapy input there, alongside the normal pre-school learning. He still has a lot to learn about the structure of these activities, such as sitting down with othe children to listen to a story etc. He'll get there though. He hasn't mixed with other children that much as, even when in hospital, gastro children are not allowed to mix freely with others on the ward as they are very susceptible to infection. He does play in the playroom in hospital but only when they know there are only surgical and other gastro patients in there - so not all that often sometimes! Sunday School is frustrating for William as he is on his TPN so has to stay strapped in his chair where other children are sitting on the carpet together. We could let him join in on the carpet but he would want to run around and it would make him so cross that he is on his TPN so can't run around freely. He is at the playgroup on Wednesday and Thursday afternoons so is free of the drip. He really enjoyed running around but was not yet organised enough in his behaviour to calm down and join in the activities. They will be working on that though! The girls were both really excited about William's big day at playgroup and came running out of school asking how it had all gone. It had been the talk of the day with their friends. It is lovely how supportive and encouraging they are towards their little brother.

Due to confusion in the day, we did not have the OT and physios today so William has a reprieve before we start bracing his pelvis. I hope the gastro team can change his gastrostomy before then as it is currently very big and cumbersome with the tube inserted through to deliver medicines below his stomach. There is a new, much smaller and neater one that combines both of these tubes into one. This will be much easier and more comfortable under the brace or support. The physio thought the appointment should have been tomorrow and there was no way we could have moved it. Everyone seemed to want William tomorrow morning - the incontinence nurse, portage worker, physio and OT and wheelchair services! I had to prioritise and put the others off. He will have a short portage session and then we will head off down to wheelchair services. This really is urgent with the poor posture he has in his buggy and the way it now uptips when he gets agitated and bangs his head around - always in busy places (as it is the business and over-stimulation that causes the agitation)!

So, tomorrow is another day of running around: school run to portage to wheelchair services to playgroup to schoorun to Hope and Ellie's swimming lesson then home for TPN!!! Well, at least it keeps me fit! Meanwhile, Paul's leg is healing but much more slowly than they thought so the frame will be on for at least 2 more months. At least he can start physio now so is getting more mobile around the house. It will be a very long time until all is back to normal though as he will have a cast when the frame eventually comes off. Mind you, it will be a walking one and below the knee so will be a HUGE improvement on the current situation.

I think we must be due a nice, calm 2007!!