Going down the wrong way

After a horrid few months, B has been relatively well the past four weeks. No seizures since we increased her meds, her pressure sores on the underside of her heels healing nicely, the folliculitis on her back and chest has healed on her chest and her knee pain is less often therefore much better. Thursday she went for a videofluroscopy/swallow study. Mainly because she coughs alot when she is drinking or has dryish food..has been for quite a while. Her dysphagia specialist from school came and has said she also has co-ordination problems with her swallow..not uncommon with ataxias. I espected her to cough and them to say yes her swallow is altered but its ok to proceed as we have been. Well instead she didnt cough and silently aspirated (means it goes down her airway into her lungs rather than down into her stomach) on the first drink. They stopped it immediately and thickened it up and she didnt aspirate after.

Food wise we didnt really simulate what causes her issues because the barium liquid just made everything slicker. The outcome will be sent to me in a report but basically she appears to be silent aspirating but not majorly otherwise she would be getting chest infections (although I have been informed it is still as dangerous without the chest infections). However it may need some minor changes such as drinking thickened drinks or such like. She also appears to have issues with mixed consistencies. So something that has liquid and solid e.g cereal and milk, tablets and drink. This became evident whislt eating a piece of pineapple where the juice runs out first. So we may have to do something about that. Whether its a new thing I dont know but we have a baseline now. I am kinda dumbstruck by this to be honest. I didnt expect her to be silent aspirating, I kinda thought she was coughing it back.

Friday when i picked her up she complained her foot hurt. I looked at it and her left underside heel is developing under skin sores. the opposite foot to the last one. and her left foot was so red, hot and swollen whilst the left was freezing cold. this neuropathy thing does my head in. anyway according to school nurses, beth is having muscular contractions almmost like spasms which force her legs down into the base of her heels..so they arent pressure sores as such as rubbing, they are more like compression sores and not alot we can do about it with all the padding in the world (and beleive me she is well gel'd up) it still will have an impact....She was crying in bed over it friday night with pain

Just scared that its not going to be the disease that stops her standing anymore but these painful sores instead.

Wand - magic...? send it her way please.

The importance of being deputy head girl

It means you have to remember to go to the meetings with the head girl/boy and the headmaster. But apparently they are at a time which is silly. 1.30pm, which she asks "is that before lunch?" No, its after. But "2pm is better, is that before lunch?" No, that's after 1.30. Anyway she missed last time but made it this week.

Topics of discussion this week included the seriousness of the level of noise in the dining room but most importantly apparently that a boy has been calling another boy Carrot-top head.
Ok it isn't funny for the boy but when it comes out of my daughters mouth in the way she speaks, I found it very chuckling worthy.

Her final comments were - I am going to tell Mr D (the head) that I order him as deputy head girl to have our meetings at two o'clock.. She was joking of course and Ok you have to be there to appreciate it but I find it very endearing that because she cannot tell the time, everything has to be at an o'clock time and to her own timetable.

The best thing was, she said she didn't need to be reminded to go to the meeting today. Her teacher came to find her to remind her and she had already gone. She was really proud of herself for remembering because she misses so many things because she normally doesn't. I was very proud of her too!

(and yes she is home tonight as we have a hospital appointment tomorrow - swallow study - and its nice to have her home mid week)

B meets Holly

B met Holly Willoughby (of Xtra Factor/Dancing on Ice fame) at her hospice a couple of weeks ago. She sent through a signed photo this week which I have scanned. A dvd is due out soon with her on it too.

sorry for being quiet

I started my new nursing placement on monday and worked three 12 hour shifts this week. So not had much time to do anything but recover! I love it. Its a childrens neurology ward (brain tumours, shunts to drain excess brain fluid etc), an 8 bed ward, and also has some general medical cases if the other wards are full. Feeling quite nurseyfied now. A way to go yet but I can see that there is some hope I will know what I am doing in the end! (you will be pleased to read!).

B has not had a seizure this week which is when she would have usually as far as I am aware which is very good news. It means that her epilepsy medication is working. I am very thankful for that.

She has a swallow study next week to see how her swallow muscles are coping. Some of you know my concerns on her coughing when she drinks or eats and the risk of her aspirating into her lungs. She has been seen by a swallow specialist at school who says she has witnessed issues with her swallow co-ordination but thinks she isn't aspirating into her lungs which hopefully the swallow study will show. She is coming with me which is even better!

Right now I am preparing for 11 mums, 11 of my southern (and one welsh!) friends to come visit tomorrow. 11 who all have children with special needs and ALL of them need a break. We are going to go christmas shopping and in the evening out for an Italian. Then a few of them will be staying for a pyjama party :). Really looking forward to seeing them and missing those who cannot come.
Let the party begin....

Painting by hand

We went to the children's hospice for the past weekend. B had fun making some prints of her hands which were then placed on top of a christmas tree on a wall and she had a little sing song

and on the saturday evening we relaxed in the teenage den watching x-factor on one of their massive tv's and eating crisps and dips!

Another balloon

That is what LM's dad said to me today. Another balloon to be let go next year Robyn. He is referring to our balloon release at our charity annual event in memory of the children that have passed away . His 2 year old daughter with special needs died suddenly yesterday overnight. The second child in 5 days from our SK community. LM's parents organise the ball in aid of SK and other charities. They are wonderful wonderful people and I am just devastated for their loss.
We don't understand why so many of our gorgeous children are being taken at the moment. All we can do is just hold out our arms to their families.

D, A and T - in my thoughts today and always.
LM - rest in peace little one.

and I am so very scared.

Catch a glimpse of B on video

She is part of a video made my her hospice. We have the full version here which she appears in twice but can't upload that. The short one on the site, its on the bottom right at http://www.chasecare.org.uk and B's smiley face appears quickly near the end.Tissue alert!

Maybe a miracle? a chance at least!

all my love and thoughts with H tomorrow as she goes into hospital for possible treatment. We love you baby!
R, M and B xxx

thankful for small things

after 10 weeks, a period of mandatory hoisting, dressings, new boots, extra padding on the w/chair, pain etc etc we finally have a result...I am pleased to say that B's pressure sore on the underside of her heel is FINALLY getting better. It sounds like a tiny victory but believe me when I say that one small thing was life changing for her for too long.

Everything crossed it stays that way and no other of the little bu&&ers show up!

Walking in that room

Sometimes I wake and I do not hear the sound of B. She should be awake. These times I am struck with fear. I do not want to walk in that room, to find something I cannot face. I share this feeling with others I know who have poorly or children with complex medical needs. When one of our friend's child is taken this way as what has happened this week, it makes our fear seem much more real and our fear goes up a notch.

I do not know what I beleive in but I hope that someone will keep my girl and my friends children safe in their sleep. However if or when their time comes, I know that they will have many little friends who will welcome them and keep them safe wherever they are.

Rest in peace dear L

Today we found out that one of our longterm SK Members children, L, had passed away, very suddenly. To say we are devastated is an understatement. L had Retts Syndrome, but as far as we are aware was well at the time. It has shocked and upset all that knew her. I remember her as a child that loved to make noise, to be around her sisters and to hear her voice heard. She had her good times and her bad times.

My thoughts are with her parents and sisters today and always and for all of us who fear.

This candle is for her.

xxx

Brief update on B

She now has her Balder wheelchair back with extra padding on the foot plates and realigned to support her legs more in order to avoid future pressure sores. Her right knee is causing her severe intermittant pain so hopefully physio will sort that out. Her skin infection on her back has spread to her chest but the doctor wants to continue with treating with special body wash. Says it will take a long time to get better. The good news is that it isn't really irritating her. Her pressure sore on her right heel is still there but not got any worse. She now has bigger boots and she wears gel lined socks all the time. Hopefully in time it will go. She had pain in both her feet this weekend but it seems to have gone now and thankfully she is able to stand transfer again.

Our main concern is the seizures - she is now on 200mg a day Topiramate for them. We will wait to see if that makes a difference.

She loves her new hair style and is still smiling
x

Monty loves high school musical 2 (too!)