Because life might get boring!

Today we had to attend an appointment with a new consultant for Rosie. We had to be in Nottingham by 10 am! parked out the bus and into the clinic....no chance! Anyway when do you ever get seen on time anyway? So we went about our morning as normal....apart from I had been up half the night with the most horrendous pain in the side of my face which I am having to accept is a toothache that is not going to go away on it's own. All the pain relief drugs I take daily for my Lupus are just not touching this pain and it wakes me up regularly...note to self...I must make an effort to find the time to find the Dental helpline number and find me a dentist! But first we have to actually get out of bed where I drifted into a drug induced slumber at around 4 am and was dragged out of it by David complaining it was 6.45 and we have overslept! URGH! Rosie is on her rescue med five days of added anti epileptics and is sleeping at night too so has not been functioning as alarm clock for a couple of nights....why does this always coincide with the mornings we need to be woken!
Thankfully by the time we had dragged ourselves out of bed and made ourselves reasonably acceptable Iris had let herself in and had the coffee made! Now there is a woman with the prioities sorted!

So Rosie breakfast prepared whilst she wakes up, coffee ready to drink and five minutes in which to pull myself together before heading to the bathroom to bath Rosie. Left Iris in charge of breakfast in the bath whilst I wake Joshua and Chrisitna, reminding them they have to get a move on as we need to leave by 8.15 to get them to school and have any hope of arriving at clinic before it is obscenely late for the appointment!

Down to sort clothes for Rosie and Eve, slurp some more coffee, wake Jonathan, ensure David is on top of medicines and breakfast and packed lunch for Jonathan. Back to the bathroom with Rosie's clothes only she doesnt need school clothes does she she is off to the hospital. Down again and swap them over for a pretty pink skirt and top and back with clothes and medicine and at last we are getting there. Rosie is giggly and happy and reasonably co=operative with the drying and dressing stuff. Down in the lift to sort Eve's clothes, Christina has her feed under control and is eating breakfast herself at the same time. Joshua finishing breakfast goes off to do rabbit and guinea pig food. Iris and Rosie are having an argument about the feasability of Milky bar with breakfast.....literally with breakfast....Rosie is wanting to break the milky bar up into the breakfast bowl of farley's rusk and cake and peadiasure....Iris is saying it would be best to eat breakfast before Milky bar...Rosie wins!

Eve is washed and dressed and reattatched to SATS monitor and Oxygen and feed...then put into cahir for school....hmmmm note to self....once dressed if one was to sit Eve into the chair before reattatching all the tubes and wires it may be slightly easier than trying to lift her attatched from settee to chair! Oh Well it all comes together in the end and the oxygen bag really does fit between the feed bag and the suction if you try hard enough!

So 8 am and Eve is dressed fed attatched to oxygen and Sats monitor and in her chair and hair looks OK so doesnt have to be redone this morning as we really dont have th etime and her one to one quite likes to play with a hairbrush I am sure! So just time to write in her book and put al her bags on the back of the chair and set to on Christina's hair. Why does the hair band only ever break when you are in a hurry and dont have another black one in the draw! Dark Burgandy is almost black isnt it?

OK so Eve ready and Rosie dressed almost eaten enough to stop her starving before lunch time, medicines given and now into her chair! It is 8.05 and we are marching on to being ready before the bus arrives for Eve. Head for our bus and get Rosie strapped in. School bus approches as I head indoors to scribble something about Jonathan in his college folder...Iris is staying on to wait for his transport, Iris heads to school bus with Eve and spare Oxygen Cylinder, and at last we are organised! Nip back for phone and then we are off...8.21 as we leave the top of our road....not too bad.

Realise we have not left the door key for this evenings carer so plan to text her with a contingency plan, arrive at school with Joshua and Christina and they head off happily....as we leave the end of the school road Tom Tom tells us we should arrive at Nottingham hospital at 10.11...not too bad then and we may yet make up some time. The journey is not at all bad actually, really quiet on the roads and we make up some time to find ourselves turning into the hospital at 10 am exactly. OK so we are going to be late for the appointment but it could have been worse. Just need to pray for that Parking space...Our God has proved Himself to be the God of the Parking space for us before and we are relying on Him and he didnt let us down...first time round and we find a spot right by the front door! PHEW! Praise God from whom all blessings flow!

So we walk into clinic with no reprimands for being late, Rosie is keen to be out of her chair and attacking the toys! UNfortunately there are pots of crayons on the tables so David heads off to distract her whilst I check everything is in order. We havent moved, changed Doctor nor our phone number and Rosie's date of birth etc are still the same as last time.

Within minutes we are called fro weighing... now that may explain some of the siezure stuff we are now weighing in at 27.7 kg....I am sure it was 24kg last time. I have been topping her up with peadiasure recently because her swallow is not good and she is gagging a lot on her food and not really eating as much as she had been.....her peadiasure has 1.5 calories per ml and she has been having 400 mls on top of her eaten food most days....and her eaten food consists of cake and chocolate rather more than is probably good for her....eeek bad mummy moment!

So we then go and sit outside the consultants room...one other child already there and three rooms with Doctors supposedly in them.....yet we sat there for an hour before being called in! David was getting irritated by this time and had wandered off into the bigger waiting area when we were at last called...I went to retrieve him praying he was not going to be all silly and moody, thankfully he wasnt. We were asked if we minded a Medical Student being present, I assured them that was fine....whilst thinking to myself she can keep an eye on Rosie and amuse her whilst we talk unhindered....not sure that was her plan but mine worked a treat! The consultant was lovely! He had come recomended by the Gastroenterologist assosciated to the CdLS Foundation and if anyone had told me afterwards he was his brother I would not have been at all surprised, they were deffnitely from the same mold! Kind caring interested, in love with Rosie in moments and full of sensible ideas whilst listening to what we said and taking that on board.

Our Concerns about Rosie and her GI tract are her increasing difficulty with swallow, and our lack of control over her bowels! The swallow first became a problem a little over a year ago....but it was only with hindsight that we realised it had been a problem first time round. It was whilst replacing her PEG Gastrostomy that the surgeon was unable to pass the gastroscope into her gullet....there was a narrowing. A subsequent Videofleuroscopy to view the problem showed a narrowing really high up on her gullet preventing food entering the gullet from her mouth/throat. The surgeon was able to dilate this enough to get his gastrsocope down and change her PEG. It was looking back over the previous few weeks feedings that we realised she had been refusing solid food and wanting only yoghurts....we had thought this just a fad and kept comment on it to a minimum hoping she would soon get fed up and revert to eating normally....she did once the dialtion was done and her throat settled from the procedure. However over the summer the difficulties with swallowing have become more evident and she is gagging and having difficulties periodically, charmingly when she eats yoghurt and milks products they come down her nose!

So we then talked about her bowels! Lovely conversation this. Rosie is either very constipated or having spasms of her bowel causing diahreaoh that leaves her dehydrated. We struggle to get any control using laxatives and if we are not careful she can flip over from impacted to running and very quickly become dehydrated. She also experiences great discomfort bith when she is unable to go and when she does.

Dr C was keen to explore the cause of both of these issues, believeing there could be a link and also believeing they could be totally seperate but still needing resolving. So he proposes a Gastroscopy to look at her swallow her gullet and her stomach, then a follow through into the small intestine, biopsies being taken at various points to rule out disease, then a colonoscopy to look at her bowel and take biopsies from there. He hopes to do all this in one go and will also write to all her other professionals to ensure there is nothing else they can do under the one aneasthetic bloods deffintely and I am going to ask Neurology if they want anything too.

Now for the best bit!!! They need two consultant anesthetists, the surgeon and this consultant all available all together on a morning list...the hope being if she is a morning patient we get more chance of it being a day case!

The date that came out is the 20th November! Joshua's 13th birthday! URGH! Better still we have to be at Nottingham for 7.30 in the morning! Great how do we get everyone else looked after to and from school etc etc? Oh well we have a month and a half to organise that lot and ponder the thought of more surgery!

Hmmm pondering the surgery we had to discuss the preperation for this with the Clinic Nurse....in order to do these tests her bowel needs to be clear of feacal matter.....usually a simple job of taking large doses of laxatives and limiting fibre rich foods for two days....not so simple with a child who can become seriously dehydrated once her bowel goes into overdrive...we have a complex trial of laxative introduction to follow starting with an 8th of a sachet of Picolax! Fun Times ahead then! Pass the wet wipes!

Traveling home then we realise we are going to be in time to collect Joshua and Christina, so call through to Nic to let him know....we are looking to be too early for school but not really early enough to warrant going home first, so stop for a coffee at a nearby garden centre Rosie has a wander around and we get some much needed caffeine! Then on to school. Arriving still with half an hour to spare I went in to talk with the receptionist about an upcoming appointment for Joshua in Eye Clinic, She looked flustered and asked if I had time for a chat! Yes I had half an hour so no problems....as she cam eround from her office she looked really worried. She was obviously not sure how I was going to react to what she wanted to say.....it started with....I am quite concerned about Christina! URGH!!!! Just what I need more worries!

OK I am remaining calm here as she tells me that in the year Joshua has been in the school she has never had a problem, he is always happy to oblige whatever is asked of him never complains and certainly never reports to her ill. However apparantly Christina is always coming to her with a headace or a tummy ache or needing a drink or upset about something! Apparantly they had had an incident at lunch time today and Christina seemed to be reacting to that. Apparantly one of the year 7s had gone out at lunch time and come back with a stash of bubble gum he had then proceeded to sell....many of the kids who had eaten this had reported feeling unwell. However most of them had done this fairly soon after lunch time but Christina had not come down to her until nearer 3pm...she was not convinced that Christina was not just playing up to the hype of children saying the bubble gum was perhaps not bubble gum at all and had somethin else in it etc etc....however it didnt appear that the staff had done much to investigate where it had come from either. I was though concerned about Christina repeatedly going to the office with minor complaints...it ws not really Christina's style at school as she loves school and will drag herself there when not really well enough to go. I was concerned maybe there is a problem/worry/stress that was causing this. So we then went through to see her. She did look not right! I took her hand which was icy cold. I didnt react to this but quite firmly asked her waht the problem was....She said she felt dizzy and unwell. She didnt feel sick but felt dizzy...I asked her to look at me because I can often tell with Christina if she is being truthful when she looks me in the eye.....but she did look me in the eye and all I was aware of then was how dilated her pupils were! He face was slightly flushed and she did not look well. BUT Christina can look unwell to order too...URGH I didnt know what to think. I certainly did not want Christina to know I was worried at that point. So I continued to ask her if there was a problem at school. Forget today and feeling unwell now was that something wring that made her frequently come to the office at 3 ish saying she was unwell. She insisted there wasnt. I sent her off to meet Dad whilst I went to pick up some books we had ordered from the book club, and once she was out of earshot I told them I was concerned because of the cold cold hands and the dialted pupils...I asked what they planned on doing to follow this up. If lots of children go home tonight saying they were given bubble gum that made them feel ill school was going to get a lot of anxious parents making calls....I suggested the at least covered themselves by reporting it maybe to the poisons centre or the police or maybe both. She did then wonder if she shoud ring the Community Police Officer who visited the school.

Christina continued to be quiet and withdrawn all evening, she did however eat a small tea and watched TV a while before going off to bed willingly at half 7. Not really sure what to make of this other than telling her never to accept sweets like that again other than from a good friend who is eating them herself!

Well My tooth is demanding more attention now so think I shall go to bed.
Prayer appreciated as always. Hope this has not been too long and waffly!
hugs