A very busy week

I have just noticed it has been a week since posting on this blog. It has been a very busy week but this gap is still pretty poor as I do like to try and post something more often. We have had lots on for William this week, the busiest day being Thursday when we had our CHASE repite nurse, together with a colleague learning all about William, our speech and language therapist and our health visitor all at the same time! This followed a later morning family play session for "special needs" children at Surestart. The picures show William playing in a car in the soft play room and playing in the multisensory room - something he really enjoys. Anyway, I'm jumping ahead of myself here. Monday started as a relatively quiet day with only weekly bloods and dressing change. William currently has a rather high urea and creatinine level, probably due to his kidneys being slightly miffed by the IV antibiotic cocktail he has just finished. He is also getting anaemic again already which is a bit of a concern as he only had a blood transfusion 2 weeks ago. We ended up spending the afternoon haveing an x-ray as William's jejenal tube had moved a bit. No-one could tell if it was still in the same place but the adult A and E reg was most interested in the image of his intestines as they really looked pretty static with not much activity going on. He could tell that he had intestinal failure!

On Tuesday, William had an OT assessment. This was hugely helpful but a little hard as it is felt that he needs a much more substantial supportive chair than I had thought. His pelvic control is very poor so he needs a lot of support there which means a moulded chair with a lot of straps and padding. The hope is that this will enable him to use both hands together as, in his current chair, he constantly relies on leaning on one hand to stabilise himself. He may need splints on his hands to stop the hyperflexibility that makes it hard for him to pick things up because his fingers can bend back rather than being able to grasp. The OT and physio are going to do a joint visit to look at his walking to see if any bracing may help. We will keep his buggy for now but he may need a more supportive wheelchair to help his posture while he is out. I was quite upset about the level of support he needs but such support now will help him in the long run.

William had a play session on Wednesday morning and thouroughly enjoyed paining. Thursday was a super busy day. We had a great time at Surestart in the morning. William was totally overwhelmed by all the children in the softplay room at first. We had to retreat to the sensory room to calm down. This room is great for William as there is lots to stimulate him and for him to explore and it is also very relaxing for him (and me!). All the children had lunch together and William was totally happy, although he wanted to have a paper plate and a cup to play with. We started learning Makaton sign language with the speech and language therapist in the afternoon. This will help William understand language and enable him to express himself. We are teaching him to sign and say "please" this week - it is very slow progress but he will get there. We are also trying to help him to understand 2 words at a time - another slow process as he really struggles and even a 2 word phrase has to be broken down and demonstrated with toys to help him get the message - he hasn't yet but, again, we'll get there,

We spent Friday at Chelsea and Westminster to check the position of William's jejenostomy with a live scan and see the doctors on the ward round to save having to go to clinic next week. Nothing new to report there except a lot of weight loss from when he was ill over the last few weeks.

Next week is another big week. Hope and Ellie finally come home on Tuesday - hooray!!! William is seing the geneticist on Wednesday. This will be an important appointment as eveyone hopes she will be able to put all the latest bits and pieces together and diagnose a syndrome, perhaps Costello Syndrome or something like it. William also has a heart echo on Thursday as he has a rather unnerving habit of going grey and blue around his mouth and eyes. Somewhere among all that I need to fit in some training for the Hydro active challenge which is coming up very soon. I have nearly raised £300 for CHASE now and Emily's Angels have raised a whopping £6000 for the CF trust. There is a link to the CHASE sponsorship page on the side of this page and a link to Emily's page from the CHASE one. (I will come back and redo this section in proper html to tidy that up and turn the references into hyperlinks)

Paul is still staggering around. He also has clinic next week so we'll see how he is doing.