Whinge Alert!

URGH! about describes my mood.
I started this blog as an opportunity to share my faith, and offload my worries, Share my joys and seek comfort for my woes.

Today I just want to whine/grizzle/moan

I feel totally miserable, dont quite know how to deal with the mounting problems and want to stamp my feet and scream its not fair!!!

rather than count my blessings right now I feel a need to list my grievances...is that totally wrong?

Jonathan, following two seriously out of character outbursts, both around a meal time, in one day we have been concerened about what caused it. Being more vigilante and watching his mood and his demeanour, we have noticed he is eating significantly less, and less enthusiastically. He is requesting foods that are easy to eat or which he is really familiar with, but even then is not eating the entire meal despite me putting less and less on his plate so as not to overface him. He is anxious at meal times. Wednesday evening he tasted his food and put his knife and fork down and bowed his head, he asked to go back to his room. A little while later he asked for his dinner in his room. He ate less than half of it.
Today at Lunch he left the table to stand by the worktop, he requested his meal there and apparantly ate it stood up. (this was at college).
Tonight, he requested soup and bread, he asked to eat in his room and he took over an hour to eat probably 2/3rds of the meal.
I am worried, Jonathan used to love his food, would finish before most of us had barely started, and would, consistantly request seconds. He loved roast dinners and although he would leave anything that was particularly crispy, calling it the bones, He ate most meats if cut small and enjoyed all veg, Now he wont eat meat at all, even struggling with chicken and mince, preferring fish, fish cakes and fish pie. He is pushing food around and leaving anything that is slightly hard, like slightly undercooked carrots, the stem of broccoli and cauliflower and wont try cabbage.
We have made an appointment with the Doctor for 8th Feb, we also have an appointment with the Speech and language therapist at college on Monday 1st Feb.
Alongside this issue with meals Jonathan is seeming anxious at the begning and end of the day, we think this is related to the taxi service that takes him to and brings him home from college. There is no consistancy of driver and unreliability for the time they arrive. Some drivers dont seem to speak to Jonathan, and although one who does bring him home at least 2 or 3 times a week, does get out of the vehicle and see Jonathan to the door, others leave him on the lane outside our property not even ensuring we know he has arrived.
Joanthan will be 20 in March, up until his 19th birthday he had open access to the Chidlren's ward and we had telephone access to the consultant via her seceratary to discuss any concerns, now we dont have anywhere to go, noone to seek advice from and a trip to Accident and Emergency resulted in no answers and no advice. Being left alone is scary!

Rosie,
Rosie will be 18 in May...her future is a really scary place, her medical issues are even more complex than Jonathan's and the thought of no peadiatric back up is horrifying. Meanwhile she is building up her problems for us to worry about.
Rosie was not expected to live to her 5th birthday. Over the last 17 years she has scared us to death many a time. Sitting by her bed wondering if she will make it through the night, sitting willing her to take the next breath. So far she has fought back each time. However she has also gathered problems over the last few years. Epilepsy took a hold on her 7 years ago, although with hind sight we now know she was having complex partial and non convulsive seizures long before that, just no one had realised that was what they were.
Over the last year and a bit Rosie's gastric system has been deteriorating, it was very subtle at first and we just assumed she had become intolerant of the mixture we had used to keep her bowels working. We tried other potions but nothing seemed to help conistantly and we ended up with over active or inactive bowels. Then her swallow became a problem, occasional coughs, gags and food down the nose became more troublesome. A slightly less than routine replacement of her PEG discovered a narrowing of her gullet. This was dilated and for a while things improved, then slowly things began to worsen again, so subtly we didnt realise at first then gathering pace we began to worry the narrowing must be reoccuring. Not keen to rush into further anaesthetics we did nothing but express the concern. Then a consultation at the CdLS Foundation Conference through up possibilities of treatable causes of both bowel and swallowing difficulties we decided to seek further investiagtions. These threw out the treatable causes suspected and threw up some less treatable ones. A severe dismotility problem with the bowel, trial and error situation with drugs to lessen pain and increase throughput. Hopefully without causing problems with excessive through put and dehydration.
The swallowing problems are due to a neurological deterioration. Taking that on board and looking at Rosie as a whole we realised that the wobbly walk and the less acurate fine motor control is also probably neurological deterioration and would tie in with the swallow and possibly even the dismotility of the gut. I cant even begin to go down the road of what this actually means for Rosie as a whole! We have a neurological appointment coming up next week. I am not sure I want to actually ask the questions but I know I need to!
Meanwhile Rosie is getting all her nutrition via her PEG. This has not been the total nightmare I expected it to be. Rosie is less anxious around food, does not spend her entire day demanding it or carrying it around. Occasionally when we are eating she will bring a plate and ask for something. Tonight she deperately wanted sausage! She had a half a gluten free sausage and really enjoyed it, coughed a bit of it back but seemed OK. The side effect of having total nutrician via her PEG is she has gained weight, this possibly explains why we have had 3 Tonic Clonic Seizures over recent weeks and have seen some episodes of partial seizures too. Again we need to discuss this with the Neurologist on Friday.

Joshua and Christina continue to go through childhood into adolescence with the problems and difficulties encountered by most kids at this age. This is exagerated by their own difficulties, for Chirstina serious anxiety issues are raising their head. For Joshua his visual difficulties mean we have extra meetings with school and he has extra input from professionals and then talks about equipment to help him in the class room. This inevtiably leads to difficulties manageing the equipment and the impact that has on his relationship with his peers. We have also added in the assessment process for a guide dog and the impatience of waiting for that to happen. Added to a bit of a battle of wills of parents and child, I am not used to this Jonathan and Rosie did not go through this! HELP!"

Then of course there is Eve. meeting her extending needs is tiring frustrating and worriesome all at once. Discovering school are not following her care plan explains some of the diabolical evenings we have had with her secretions and breathing issues. Trying to resolve this today was frustrating to say the least. Demonstrating the difference of SATs at 88 prior to proper suictioning to SATs at 98% after did not seem to be enough for them to want to try it for themselves! Despite care plan clearly showing they had had training to do so! We brought her home, and I am not sure I can send her back until I know they are going to meet her needs safely! This desire to block her airway and refuse to breathe properly means we have used a significant muber of suction catheters over the last 48 hours, and my sleep has been seriously compromised. This means that my tolerance is low, my tear ducts seem to be on over drive and I think it has left me seriously parnoid!
I have made a total fool of myself with someone I respect hugely, wondering if I have majorly upset them only to discover the reason they hadnt responded was an overload of responsabilities and then I added to the load with my own unecesary worry! Sorry N!

Amidst 6 appointments relating to children this week, I have had three for me, and one for David, Manged today to cancel one appointment in favour of another on Monday next week, add in an extra on eon Wednesday and then realise I have another week of at least one appointment every day. We have had further contact with our solicitor regarding our Building Legal Battle, having missed deadlines from the Courts directions due to delay by the other side holding up the surveyors report we now have no idea what that will mean. The Solicitor assures us it is down to the othersides solicitor to sort it out as the delay was their doing not ours. I am not convinced this will not lead to a few extra hundred pounds for letters and phone calls from our solicitor to theirs/the court/us in the meanttime! Another appointment added to the following weeks existing 7 to meet the solicitor face to face as the one dealing with our case left at Christmas! I hope the reading of our file to familarise herself with the case will not also be added to the bill!

I am not sure anyone will have actually found the energy to read all that miserying. If you did, I really appreciate it and will appreciate your prayers even more! At the moment I am clinigng to the promise that when I dont know what to pray the spirit will intercede for me!

Faith belief trust all in tact....Despite wanting to stamp my feet and scream! I will resist both as my feet hurt too much without stamping and if I scream I risk waking the sleeping children and upsetting the ones who arent!
Meanwhile I think I ought to stop waffling and go to bed!
Night!