Thursday, May 21, 2009

An incredible 6 months!!

Yesterday was 6 months since William's transplant!! What an incredible 6 months it has been and what a huge difference it has made to his life and to all of us.

I have blogged on the 'Gifts of Life' blog here a lot of what I would say here, and there are some pictures too, so please do hop over and have a read.

Just to add here, thanks so much to Jessica for 'Emily' the wonderful balloon William received through Postpals yesterday, on his half transplant birthday. Perfect timing. He absolutely adores 'her' and plays with 'her' nonstop. He always loves balloons but is having even more fun with it being a little person, whom he has named Emily.

Monday, May 18, 2009

Two Huge Thank-Yous

I have lots, as ever, to tell you all but today's blog is all about thank-yous. I have two massive thank-yous. William received a special parcel today, a wonderful quilt of Thomas and his friends, characters and the ones in the real world today from Love Quilts. It is a fantastic quilt, made of cross stitched panels from all over England and from Northern Ireland, Majorca and the USA. Thank-you Katherine, Karen, Stephanie, Sandy, Jan, Jan, Gilly, Victoria, Sue, Debi and Patricia. William is a very happy little boy and I know he will love it and treasure it always. It will be a family heirloom and will be used as it is meant to be but equally well looked after and cared for.
I have another huge thank-you which I have been waiting for a good time to make. Well, we are on the subject of thanks and these thank-yous are linked too. A huge, huge thank-you to David and Jacqui. David and Jacqui are cousins of Paul and Paul once sung at David's wedding, a good few years before I met him. We received a very amusing letter about this and David wanting to return the favour but not really being a singer himself. David decided to return the favour by training for and running the Edinburgh Half Marathon on 5th April which he completed in an impressive 2 hours and 4 minutes. In doing this, he raised some money for us to help William and the family. This was a total surprise to us and we were amazed by the generosity of David's sponsors, especially the Staff at Support Services and The University of Edinburgh. Thank-you so, so much.
We have been thinking hard about how to spend the money. Now, here is where this is linked to the quilt. William's bedroom resembles a hospital room. He has a hospital cot that was to enable us to access his line easily when he was on TPN. He has no bedroom furniture but has a drip stand and a trolley to prepare intravenous medicines and his TPN and, in place of toy shelves, he has a set of drawers full of medical bits and pieces. Some of this he still needs as he has his feeds and his stoma bags and things we need to change them. Sometime over the next year, William will be having a brand new bedroom. We are having a downstairs extension as his physical limitations mean he can't go upstairs without a lot of help. Our house is due to be adapted for his needs. We still don't know if he will eventually need to use a wheelchair in the house as a lot depends on how he copes with his body as it grows. With this in mind, we are having major work to widen and move doors and open up extra ones, as well as a downstairs bedroom and wet room for William. We will have a huge job to re-floor and decorate the whole of downstairs after this (so be ready for a painting party anyone who lives near enough). We wanted to be able to make his room extra special as he has never had a little boys bedroom with medical care taking it over. With so much to do to the house, this would have been limited but we are going to spend most of the money on a really great room for Wills where his medical equipment can be hidden away and it will be a bedroom he can enjoy and play in and retreat from his sisters in. This will be something he will really enjoy as he grows up. The girls had to go into a room together when William came along and are going to have a room each again when he moves downstairs. The time I spent on all William's care meant that I have neglected their room and it has run down a fair bit (the whole house has really). So, they will each have some of the money to spend on personalising their rooms. They are really excited about it.
This will all be a fair way down the line as we are waiting for the work to be done and don't know when it will be. So, in the meantime, a little of the money will be spent on a few days by the sea - the first sea-side holiday we have had since William was born. We can only manage a few days away this year as William's care needs are still high and, as I don't drive and Paul is at Glyndebourne every single day of the summer, there is only so much feed and medicine I can carry. We will make it really special with the extra funds we can put into it and the children are really looking forward to it.
To help with this holiday and to make the best of our new lives having loads of great days out, I wanted a fold up special needs buggy for William as his electric chair and big frame buggy, although best for him for school and local trips, are very limiting on a day out. Last week, I bought one of these buggys from e-bay to put a little of the money to immediate use and we put it to the test on a day out on Saturday (blog on that to follow as this is long enough already!).
There is one last thing we will do with it (we are really making it work so I hope you will all be pleased and David will think those miles worthwhile!). While William was isolated in his cubicle for three months after transplant, the very best £20 we spent was on a cheap and cheerful freeview digibox to supplement the TV in the room and enable Wills to watch round-the-clock CBEEBIES, which was his lifeline really. We want to purchase a similarly cheap and cheerful box for the five cubicles to enable other children to be able to enjoy the same after their transplants. I will be sorting this out when William is in for his 6 month post transplant tests in a couple of weeks. It isn't a huge amount of the money but will bring a lot of joy and comfort to the children, and to the parents who sleep in there with them. Cheap boxes work well and are not too expensive to replace if they get stolen so, within reason, we will try and make sure there are always boxes in the rooms.
I really hope you are happy with our choices and will post photos when the bedrooms are done. We were totally amazed by this so thank-you so much again.
Oh, and David and Jacqui, you did include an invite to come and see you. I hope you meant that because we hope to combine a Gifts of Life photoshoot near Glasgow with taking you up on it sometime. We are really looking forward to meeting you

Sunday, May 10, 2009

Hold the Front Blog Page!!!

It has been another amazing week and there is a lot to tell you about. This was going to be another newsy, catch up blog but something so exciting has just happened that all that can wait for the next few days. Such a major milestone deserves it's own 'front page!!' William has eaten a whole fromage frais this morning!! It is the first time he has done anything more than lick something. He decided he was going to do this yesterday to earn the engine Paul has waiting for him for when he eats a whole pot of fromage frais.He has known about this for ages and held the 'one day' view but, all of a sudden, he decided for himself it was time. I fed him to make it easier and he enjoyed the first half pot. It became a bit of an ordeal after that but we made it eventually.

This is great news as it has broken William's aversion to put anything into his mouth and swallow it. So, now it is a case of weaning. William needs to learn all the skills he should have learned in his late babyhood. I have told him that I will be feeding him various soft foods and purees every day from now on and will be a little forceful if necessary to get him to the stage of eating enough in the day to be able to stop his daytime gastrostomy feeds. If he eats a little something every day this week he gets a present on Friday. The next challenge will be to eat a little something at every meal time, and then he will get another pressie. After that, he will be expected to eat because he wants to and because he needs to. He just needs a little push to get started.

There is lots more news but it can all wait for a couple of days. The only other thing that I will tell you for now is that Wills is also out of nappies. He has been a total superstar over the last couple of weeks and we are so proud of him.

Saturday, May 02, 2009

Bye bye nappies

It has been a lovely day today. Most of the day has been busy sorting out deliveries of feed and their giving sets and containers etc. I never have the space for it all when we are fully stocked so it is always a challenge. I still get a kick of seeing all those bottles of feed arrive and looking at them knowing they will be tolerated and absorbed. It is soooo much nicer than a delivery of TPN! Today was even more chaotic than usual as we had our delivery of 2 months supply of nappies yesterday. I have 18 packets of nappies in a big pile in the conservatory and they may be there for quite a while as....drum roll.... William was in pants and dry all day today!! What a star! I decided to have a go at potty training on Wednesday and he used it straight away so I put him straight into the Thomas pants I bought as an incentive reward. He had a few accidents on Thursday and Friday and today was the first dry day. He is still in nappies when we are out and about and at night but I think it will be night time only within a few weeks, although I may invest in a travel potty as he does tend to go little and often. He thinks it is all very funny at the moment and is drinking as much as he can to 'make more wee'.

Potty training is one of those things thay got put on the shelf while we dealt with the more life threatening things. This will not be too difficult to catch up with but there are other things that need addressing now we are coming up to 6 months post transplant and William's health has stabilised (for the time being, I always say this because you can never be complacent after a transplant). One of these things is his cerebral palsy and maximising his mobility. We have never really done a huge amount of physio with him as it was not the priority. Now Wills is so well, we are able to see what of his physical limitations were due to him being unwell and what needs attention. He has a foot deformity and some tightness in his legs. His foot deformity would normally have been addressed when he as a baby but it was not in his best interests to do it all then and was out of the question once he was waiting for a transplant. I had a long chat with his physio about it this week and the time has now come for action to be taken. We are waiting to see his orthapeadic consultant but it is likely that William will have something called the 'ponseti method' carried out on his feet. This entails around 6 weeks with his legs in plaster up to the knee. Each week, the angle of the plaster is varied slightly to correct the deformity and bring his feet to 90 degrees. After that, he will probably need to wear boot joined with a bar for a proportion of the day. He is going to hate it and it seems a bit cruel when he is enjoying running around without his TPN. However, he has a great chance now to be healthy for, I hope, a good few years, maybe more. So, it is also cruel not to correct the deformity as that would mean he would almost certainly loose the ability to walk in time. He will probably still tire easily and use a combination of walking around the house and wheelchair for longer distances but that is still a lot better than being unable to walk at all. So, we will do this and we will keep him going through the process. I will ask that we wait until after the summer though. He deserves the summer on his feet, having fun first.

Despite being busy most of the day, I did steel some time sitting in the garden with a coffee and the paper. It is so lovely feeling the beginning of the summer and knowing that there is a very good chance we actually will spend it home together this year. Moments like that over the last few years have been spent in the knowledge that enjoying being at home and enjoying the garden would not last for long and we would soon be back in hospital.