Goodbye 2011, I didn't like you very much!

Greeting my little gigglers. As 2011 draws to a close, I am still in the hospital with Jack. As I said before, this time last year, Jack had been rushed to hospital after having a 22 minute seizure and spent New Year's Eve in hospital and most of New Year's Day.

Little did I know at that time, that we would end the year by being in the hospital, after a period of 3 months. The start of month 4 is tomorrow.

Christmas day. Jack's getting a cuddle from his new  panda bear

I am struggling now if I am honest. I struggle to sleep, get outta bed in the morning and now I am starting to dread going into the ward every day cos each day presents a different set of problems. It never ends, there is no let up and exhaustion is now my best friend.

We are booked into a hotel again tonight as I just couldn't stand the thought of spending the New Year in a poky little room. We spent Christmas there too, going between the hospital and the hotel and it turned out to be a surprisingly good time. We had a pool side room, a connecting door between the rooms and we were, in  general, a lot less stressed than we would normally have been at Christmas time. No rushing about buying last minute food, presents etc. I think Holly, Jacqui and Diana actually had a really good time. We ended up staying for 4 nights!

Holly in the hotel with her one of her favourite Christmas prezzies

o as the year draws to an end, I would just like to say a heartfelt thank you to all those who have supported me, read my blog, sent supportive messages and texts, visited and kept me sane and just in general helped to keep me going.

I wish you all the best for 2012 and I hope that it is a good year for you. Much love and hugs to you all from the North of Scotland.

Merry Christmas my arse!

LOL. Do you like the title of this post? One of my best friends gave me a Christmas card with that on the front and it made me howl with laughter cos basically, I couldn't have put it better myself.

Jack is still in hospital and I have spent the last two weeks arguing with doctors who have refused to keep on top of his pain. Finally they have decided that he needs an operation for a Fundoplication (tightening of the lower oesophagus where it enters the stomach) and a Jejunoscopy where they fit a feeding tube into his gut, bypassing the stomach. At the moment he has a temporary feeding tube.  They told me yesterday that they can't slot him in for these operations until 11th January, 3 weeks away!

I was told that there are other people on the waiting list before him and I argued that as they were well enough to be at home and Jack was not, surely he would jump the queue. No such luck.

Does this look like a well boy to you???  Jack getting an EEG.

Apparently it is not that straight forward as Jack may well need Intensive Care nursing after the operation so they have to make sure that there is space. As Aberdeen Children's Hospital does not have an intensive care ward that would mean transferring him to another hospital. So I suggested they just transfer him to Edinburgh now so that he doesn't have the trauma of the journey, post operation.  That way, he would be fast tracked and it would also mean that I wouldn't miss out on the long awaited appointment Jack has with the back surgeon in Edinburgh on the 18th January.

Plus I couldn't stand the thought of staying another 3 weeks in that bloody hospital so this morning I lost the plot with the doctors (once again!) and "threw my toys outta the pram".

The result being that Jack was taken back down to HDU as they decided he might have another chest infection and needed more intensive nursing and he is being transferred to Edinburgh at the start of next week or sooner if his condition deteriorates.

So it looks like we will finish the year with a bang, the same way we started the year.

I finally resigned myself on Monday to the fact that having Jack home for Christmas was not going to be an option so I booked us into a hotel for the weekend, close to the hospital and that means we can be close to him but have somewhere a bit more luxurious to go to at the end of the day. My sister (in law) Jacqui will be joining us, as will my lovely lodger, Diana.

If all else fails, it's good to have a back up plan.

In the end, it's not where you are, it's who you are with that counts.

Guy, one of the nurses, looking very festive!

I wish you all a very Merry Christmas, where ever you are.

Beam me up Scotty!

It has been a very long week since I last posted.

Jack has been very uncomfortable and I have continued to argue with Doctors as to whether he is in pain or not.

I think he is and they think he isn't.

source

He is not able to tolerate his feeds and is being sick. There is blood in the sick and when his tummy was aspirated a lot of brown reddy sludge came out. I was horrified!

So finally he got some painkillers and they were sedating him to give him some peace. At last, after being uncomfortable for days, he was finally at peace. He had even managed to come off oxygen but then it all went a bit crazy.

On Wednesday morning, he was sleeping in his wheelchair when I noticed he had gone a bit grey. I alerted the nurse and she checked his sats and his oxygen levels were in the 70's which wasn't good so she put him back on oxygen. He had a couple more episodes throughout the day but nothing as bad as the first one.

About 5pm, his doctor, Dr S along with the lovely Dr O appeared at his bedside. Now the lovely Dr O is a horrible female. She was Jack's Dr for many years and wouldn't recognise a seizure if it met her in her soup! She argued with everything I said but in the end, I was usually right, which went down like a lead balloon. It all came to a head 5 yrs ago, when she accused me of making Jack ill. After that I refused to come back to the children's hospital in Aberdeen.

My feelings about Dr O have been recorded and it was understood that she would no longer have anything to do with Jack's care while in Aberdeen. So imagine my surprise when she just stood there, smiling at me as if there had never been any issues.

I was so angry and told Dr S that I was happy to speak to him but not while she was present. She looked at me in total surprise, pointed to herself and said "you mean me?" and I replied "yes, you, so could you please leave". Her face was a picture, let me tell you and off she scuttled.  Dr S, drew the curtains around Jack's bed and asked was I happy to speak to him and I said that I was. He was grinning from ear to ear, so I think he was expecting it!

Jack on Tues, off oxygen

About an hour later, my sister Julia came in and we headed off for a coffee. I came back about half an hour later to find the curtain pulled around Jack's bed and I assumed they were changing him so had a wee chuckle to myself that, phew, I'd missed that one!  But as I got closer, I could hear this noise and as I rounded the corner I could see that his bed was surrounded by doctors and nurses and he was being helped to breathe by a form of c-pap. I was in shock and was unable to do anything but watch while his sats dropped again and again but eventually he started to breathe on his own. Then we were rushed down to HDU.

Another doctor appeared and felt his stomach and told me, like her colleagues, that his stomach was soft and that's when I lost it! I was so sick of arguing about his stomach! I knew it was soft and I had been told many times but my point of view was that there could be other things going on there apart from something you could feel, like an obstruction!! I then demanded a second opinion and to be moved to another hospital if I didn't get it. I was so sick of arguing with these people as I was convinced that with all the agitation and seizures Jack had endured over the last few months, that it had upset the balance of his stomach and that he probably had ulcers at the very worst or just an inflamed stomach.

source

The next day, Thursday, the GI doctor appeared and he agreed to take a look via an endoscope but that it wouldn't happen til next week. He also suggested moving Jack's feeding tube into his gut, bypassing his stomach all together, therefore avoiding inflammation and excessive reflux. At last, a plan, but it wouldn't be happening til next week.

Thursday night and Friday were horrendous as I watched Jack writhe and moan in pain without any pain relief or hydration as they were unable to get any more canulas into his viens, They were afraid to sedate him after he had stopped breathing so it was decided that they should take him into theatre and put in a Central line or a Hickman line and they would combine this with an endoscope. An hour before he was due in theatre, I was still arguing with a doctor re Jack's pain, It was totally insane. Jack went down at 3.30 and it was the longest 2 and a half hours ever.

My gut instinct told me I was right but I started to doubt myself and then felt bad for hoping that he had what I thought it was because if I wasn't right, I couldn't bear the thought of starting to look elsewhere again,

source

At 6.15pm, Dr B who did the endoscope, came to see me. He showed me photos of some of the severe inflammation and extensive ulcers in Jack's oesophagus. I was appalled but also relieved that at last we had an answer and there would be no more arguing over pain relief.

It was a bitter-sweet victory and suffice to say, there were no doctors around for the rest of the evening.

Is it really December?

Hello my little gigglers. I can't believe it is December already!

This is the start of my 3rd month of hospital living. It is truly sucking my will to live! LOL

I have been home again for the weekend while Granny Mac stays with Jack in the hospital. It's been a hard week so Holly and I took off to Inverness for some retail therapy. We took the train so that I didn't have the worry of getting parked.

We managed to get so many bargains including an outfit for Holly's High School dance, complete with shoes, which are so so gorgeous! I am mega jealous of them, so much so that I may have to borrow them sometime. I saw this necklace and I just had to have it cos it was just perfect.

how cool is this?

By the time we got off the train at Elgin, the snow was really coming down so I was glad to get home. I think by then I deserved a big glass of wine or two.

In the end, I had the whole bottle! Yummy.  It went down so so well. We also watched a dvd that Holly had bought called Chalet Girl which was actually really funny and is now Holly's feel good movie of the moment.

And god knows we need something that makes us feel good at the moment. I am trying to keep my spirits up and be strong but it is so damn hard when I just want to take Jack home but I can't.

I still try to read your blogs when I can so although I don't comment, know that I am lurking!

Thankfully I have been pretty organised and have done my Christmas shopping, just have to wrap things and write out my cards. As for decorating the house, well that will have to wait.

Last weekend when I was home, we saw the Christmas lights being switched on and then Holly, Emma and I went to the pub. There we were chatted up by a young guy and his friend who made me laugh with his chat up lines. The best one was when he sat down next to me and said "you must be tired girl" and I replied that "no. I'm too bad". He said "but you must be tired, cos you've been running through my head all day!!!"

Pretty corny but hilarious all the same.

Hope all is well in your world my little gigglers.

Hi from snowy Scotland

Just a quick post. I am home for a couple of days to recharge my batteries as I am completely exhausted. I just want to be with my girlie Holly and to just chill for a day or two.

It's been a tough two weeks but finally Jack is out of HDU and into the normal ward. His seizures are still a bit crazy but thankfully he is off the medicine that caused another bad reaction. It is enough to put me off trying anything new ever again.

His chest was bad too as he aspirates all the saliva that the seizures produce and then it becomes infected in his lungs. He has had some intense physiotherapy and suction, once again, and now I am a demon with the suction machine. I still hate doing it but hey, it has to be done.

I have been overwhelmed by the support, comfort and help from people, far and wide over these last two months and I thank Bouncin' Barb for emailing me and then updating you all on her blog. She is such a star!

People have been so so kind. Friends and family have walked dogs, cooked me meals, bought me endless cups of tea, taken me out to dinner, bought me thoughtful gifts and sat with me during my bedside vigil. The many comforting comments on Blogger and Facebook have lifted my spirits and kept me going when I thought I couldn't.  I keep telling Jack that there are people rooting for him all over the world and that makes him a very special boy.

image from here

My darling girl has been coping on her own again but I did manage to get her through for the weekend and we took time out and went to see Breaking Dawn. We loved it. Spending time with Holly is some of the best therapy ever and it's free! And today we finally got all her University applications in, so that's another weight off my mind. 

I can't believe that November is nearly over. The last time I looked up, it was September and driving home today, it was snowing and the sky was dark. It reflected my feelings perfectly.

So now, I am curled up on the sofa, wrapped in a duvet, watching funny movies that a friend dropped by with tonight. Another kindness that brought me to tears.

I will leave you with a song that I sing to Jack all the time and one which he recognises. Hope you like it.

What's it all about?

We are home but it has been anything but normal.

Jack hasn't been able to go back to school because he is still not strong enough and also because the school need training in using suction and giving rectal Peraldehyde for seizures. On top of that, the school are fighting to get nursing care for Jack so I think it is unlikely he will get back to school until then.

Holly is really struggling with the trauma over the last 5 weeks and I think she has a touch of depression. I am trying to get her to bed early, eat a bit healthier and take multivitamins. If that doesn't work then I need to take her to the doctor.

an apple a day, keeps the doctor away  (source)

I was only home 8 hours and I had to give Jack both Midazolam and Peraldehyde to stop clusters of seizures. It was 1.40am when he finally went limp and I couldn't stop crying. There is only so much one person can take and having to do that for the first time was one of those moments. I know it's not the worst thing I have had to do but it's so invasive and I hate it.

Jack in HDU, first day off the ventilator

I seem to cry at the drop of a hat at the moment, just can't keep it in and found myself breaking down on Monday morning when it took me an hour to get through to the Dr's surgery, after being cut off and having to listen to an annoying robotic voice telling me I was number 6 in the queue. When I finally got through to the pharmacist, I just fell apart and could hardly speak through my tears but finally managed to blurt out what I needed to tell her.

The school auxiliarys are coming into my house to give me a bit of a break but I can't leave them with Jack because they haven't had the training. I am also training up a lady who is now coming in to help get Jack up in the morning and put him to bed at night. The Crossroads carer, Marion, came in on Tuesday but again I was not able to leave her because she hasn't had training and just as well I didn't because Jack decided to put us through our paces again and he had to have both rescue meds again.

Poor Marion was thrown in the deep end just like me and it hasn't let up AT ALL!

Wednesday he was so agitated he only slept 4 hours and then started fitting at 5am so required both rescue meds again. I had been up most of the night with him so by then I was completely exhausted and so weepy I was turning into a gibbering wreck. Thankfully he was due in respite, where he was able to go because some of the carers on duty were given their training.

They had the same problem and he again only slept at 5am as he required rescue meds. They called a doctor at 2.20am and they suggested pain killers to calm him which didn't work. The doctor came back at 9.30am and he wasn't happy with Jack's heart rate which was very high and his oxygen levels weren't great either so they called an ambulance, which took him to the children's ward. I arrived 5 minutes before the ambulance and once again, I broke down.

Jack's teddy in ICU. He looks like I feel lol

So now we are back where we started 6 weeks ago, coping with the side effects of a new medicine. Hopefully it wont have such dire consequences as last time cos to be honest, I don't know how much more, we as a family, can take.

I am truly truly running on empty.

One Step Closer

Jack was discharged from hospital on Wednesday and we are now at Rachel House the children's hospice. We are here til Saturday and then we get to go home! WOO HOO!

photo from here

It's not til I got here that I realised how bloody exhausted I am. Holly and I managed a wee walk around town yesterday and that was it as I was sooooo tired.

I will be so glad to get home, back to my own bed and a tiny bit of normality cos lets face it, nothing about my life is normal really! LOL

Holly and I are going to Stirling today for a wee bit of shopping. A bit of retail therapy does a person the world of good, don't you think?

Hope all is well in your worlds my little gigglers.

Laugh til it hurts

At the Sick Children's Hospital in Edinburgh they have a Drop In centre where parents and siblings can go to take time out while a child is in hospital. It's a great place and they even offer free therapies such as Reflexology and Aromatherapy Massage.

I booked myself and Granny Mac in for a massage cos I felt that we were in desperate need.

source

Granny Mac's appointment was first so I spent time alone with Jack for the first time since he had come into intensive care,  Then the physiotherapist came to give Jack some quite aggressive physio to get him to cough up some of the gunk in his chest.

suction machine for getting up the gunk

It is quite harrowing to watch but I always stayed because I felt that he shouldn't go through it alone.

So there I was, standing at the bottom of his bed, getting quite distressed as they shoved tubes down his nose and throat when Granny Mac appeared beside me. She leaned in and whispered in a shocked voice "I had to strip off for my massage!!!".

I looked at her shocked face and I burst out laughing, Once I started, I just couldn't stop! I was bent double, hanging onto the end of Jack's bed, with tears running down my face, absolutely dying with laughter which then set off Granny Mac and the two of us couldn't speak we were laughing so hard.

I caught sight of the nurse and physiotherapist looking at me as if I'd lost the plot and that set me off again! Finally though, I was able to blurt out why I was laughing and they thought it was hilarious too,

It turns out that Granny Mac had never had a massage before in her life and when the therapist left her to take her top off, she returned to find Granny Mac standing in the middle of the room with her bra and vest still on! The poor therapist was a bit confused and said "oh, are you just going to pull that down?" and "Granny Mac said "oh do you need me to take everything off!" The therapist replied "yes if you don't mind and then lie face down on the table". Granny Mac said she didn't have a clue what was going to happen to her next!!!

I am not sure whether it was an experience that Granny Mac is likely to repeat but it sure made great blog material for me.

Hi...

Sorry it's been a while but I just popped in to let you know that Jack is now in the Neurology Ward, off Bi-pap and he is holding his own now.

His breathing has improved and the seizures have calmed a little. They are trying a new medicine which is making him agitated again but not as bad. Hopefully it will pass, if not, then at least we are in the right place.

I am heading home tomorrow for the weekend and my Dad is taking my place. It's been 3 weeks since I was home and I soooooo need my own bed and some of Holly's laughter to lift my spirits.

My little fighter

Jack is now in HDU. They pushed him too hard when they tried to wean him off the ventilator and he then had a very rough few days and was put on a Bi-pap ventilator, which was a bit more intense.

They haven't tried to wean him off it at all, has been on this for 4 days and is exhausted.

The seizures have become more intense too so they have put him on a new med, starting today. So here's hoping that there is not an extreme reaction this time but if there is, at least he is in the best place.

I am hoping to get him sitting up in his wheelchair today in the hope that this helps him to clear his chest without endless suction, which is distressing for both him and me.

They have said not to expect to be home for at least another week so I just have to be patient and be guided by Jack and how he copes with everything.

Keep sending him your positive vibes.

A Quick Update

Jack is still in Intensive Care BUT he is looking a better colour and they have bombarded him with antibiotics to get on top of the chest infection.

They are still giving him some intense physio and they are now trying to slowly wean him off the c-pap machine.

Seizures have started up again but they are not too intense.

I think we may have turned a corner.

Thank you everyone for all your prayers, well wishes and very positive vibes. They are much appreciated.

Watch this space!

Running on empty

This is just a quick post.

Jack is in Intensive Care in Edinburgh Sick Kids after having well over 50 seizures. I stopped counting after 50.


They gave him so much medicine to stop the seizures from 2pm Saturday until the early hours of Sunday morning when a retrieval team flew up from Edinburgh to get him.

He was sedated, intubated and flown back down to Edinburgh at 7.15am Sunday morning. I had no sleep so my friend Emma drove myself and Granny Mac the 4 hour journey to the hospital.

He is still in Intensive Care. He was extubated this morning but is struggling to to breathe by himself due to a bad chest infection. They now have him on a C-Pap machine.

My lovely boy has been through the mill and I am hoping and praying for a good outcome.

That's all I've got for now.

A better day....yipee!

My lovely boy is a lot less agitated today. He didn't need to be sedated as much which was a good thing.

Bad news is that all that lying around meant that the mucus collecting in his throat has got infected so he now has a chest infection. They have been using a nebuliser on him a few times today and I was helping the physiotherapist get some of the mucus off of his chest. To do this I had to use the suction machine while she did the physio on his chest. It helped hugely and we discussed having a suction machine at home. I don't want one. No way, no how, no when. In the end it's not my decision but I know in my heart that he is needing it more and more.

With him lying still for, at the most, 3 minutes at a time today, I was able to get a look at the bruises he'd given himself.

He was kicking one leg with the other

his ankle got a fair pounding

I don't know how he did these ones!

His knees were rubbing together as he was so agitated

My poor boy!

He is such a trooper. It took me ages to get these photos as he was wriggling about so much! He was looking at me as if to say "what is my crazy mum up to now?!" The look on his face made me laugh. With facial expressions like his, he doesn't need to talk cos I know by his face exactly what he is thinking.

He is just so gorgeous.

Update

Jack became very very agitated Friday afternoon. He wasn't distressed or upset, he just couldn't sit still and the sweat was pouring off him.

He moved that much that he nearly slid out of his comfy chair. Holly and I had a right job trying to slide him back up but we managed it in the end. His arms were banging against the sides of the chair, his legs and feet were banging against each other and he was throwing his head back.

Putting him to bed was a total nightmare and he was half way down the bed and drenched in sweat again before I had even given him his medication! So I stripped him down to a vest and boxer shorts and took the duvet out of the bed. He didn't lie still til just before midnight. I couldn't put his overnight feed on until he was still as he would have got caught up in the feeding tube.

He did sleep for about 7 hours but as soon as he was awake again, off he went. When it came to getting him dressed, I was shocked to see how many bruises he had on his legs and arms. My poor boy. Getting him dressed was like taking my life in my hands. He kneed me in the throat, in the stomach and punched me in the face. By the time I wheeled him through to the living room, I was at my wits end. Holly's boyfriend David gave me a hug and I just broke down.

There wasn't time for that though as I'd to get Holly to horse riding. Poor Jack seemed to hit his arms and legs off of everything and getting him into the car was horrendous. It took 3 of us.

Back home, after putting him on the floor where he seemed to be safer, he got more hyper. He was moving so much that he made his way around the room! So I called the Neurologist in Edinburgh.

It was 4.15pm before the consultant called me back and we were at the children's ward within 15 mins.

It took four of us to pin him down to take bloods and put a cannula into his foot. I was practically pinning down his hip area and thighs, my head tucked in right behind his bum (cos I hate seeing them put needles in) when the consultant came into the room and asked what dose of the new medicine he was on. Thinking that he was talking to the nurse (as I'd given her all that information) I ignored him as Jack was wriggling like a snake underneath me and belting me with his arms.

When he repeated the question, I lifted my head outta Jack's butt area and caught the eye of the nurse who was trying really hard not to laugh at the look on my face. I was thinking WTF? How was he expecting me to think in the position I was in, pinning down a child who was fighting me like a tiger, battering me senseless and who had filled his nappy with a very unpleasant aroma which was filling up my nose and rendering me speechless.

As he looked at me expectantly, I realised that he did, in fact, expect me to answer so I had to get my shit together (pardon the pun) and answer him. I told him the dose but said the box of medicine was in his bag at the back of his wheelchair. He then rummaged in his feed bag with me saying "not that one, the one on the back" as he then rummaged about amongst the stuff to the front of the wheelchair with me again saying "not that one, the one at the back" getting a bit exasperated!

When he finally left, I laughed hysterically cos I think I was losing it by then!

Little did I know that he had actually been on the phone to the hospital when he came through to ask me that question and I'd ignored him! Oops.

Finally about 8.30pm they gave Jack some Diazepam and he was asleep within minutes. I left soon after.

He didn't have a good night. He slept for only an hour and was given more sedation at 4am. Today was slightly better but still he was all over the bed. He did manage an hour this morning.

Peace at last

More bloods taken this afternoon and there was good news. His kc (I think I got that right) levels have halved as they were really high which means that he isn't burning so much muscle now. He is still retaining fluid but is sweating a lot so some is getting lost there at least. They have stopped the new medicine, thank goodness.

He managed another sleep around 7pm so maybe tonight will be better. Onwards and upwards.

It just became too much

Jack is in hospital....again.

His agitation grew so bad that he was unable to sit still and was sweating buckets, so much so that I was changing his clothes 3 times in a short space of time.

Yesterday, I called the consultant in Edinburgh to ask for advice. Three hours later, the advice was: "take him straight to hospital, it shouldn't be that bad, the sweating is a worry. Once they have assessed him, they can call us back for advice".

I will fill you in on the rest later.

The lurgy still lurks

I am still under the influence of this dreadful lurgy. It has been 3 weeks now and really, it should bugger off now cos I am getting fed up of it lurking around. I have been reminded of parts of my body that I had kinda forgotten about really, like my eye sockets. Who knew they could hurt so much? And why I haven't coughed up a lung yet, will forever remain a mystery!

Holly has been home all week, doing her dying duck routine and it's kinda hard to be sympathetic when getting up to get her a drink feels like climbing a mountain! Both of us are hardly eating cos we feel so queasy but then we feel better when we get something into our stomachs but nothing looks or tastes edible!

I am soldiering on though. I have finished my work with the panel, deciding the tenders for children's services. It was a lot of work but it was good to see it from another perspective.

I had Jack's annual review at the respite centre this week and things have been updated and a lot of sensitive issues discussed. Seems that since the referral to Rachel House Children's Hospice, staff there are a little more apprehensive looking after Jack. I pointed out that yes, the referral changes my support network but that Jack's condition, actually has stayed them same. He will always be more vulnerable than you or I and that hasn't changed.

I also met with the school inspector who wanted to discuss the Adult Learning aspect in the community so there were quite a few of us unpaid carers around the table telling him about the courses we had been on and the impact it had made on our caring role. All positive stuff by the sounds of it.

We are on week two of the new medicine. Jack is very agitated. The poor boy just can't sit still and he has managed to deck me a few times with his arms and kick me with his legs but I am getting better at dodging! This makes dressing him and changing his pad a major challenge but I am up for it. Who needs to go to the gym when I have Jack keeping me on my toes.

Hope none of you have gotten the dreaded lurgy. If you have, then you need to chase it away with lots of hot toddys! The adult recipe is further down the page of the link. It will either kill you or cure you. LOL

Enjoy.

Laughter is the best medicine

I am still immersed in the dreaded lurgy.

I dutifully coughed and spluttered, with my hand over my mouth, but fingers splayed. in the waiting room at court yesterday so I just know that there will be quite a few people waking up today feeling like they are dying!! Well maybe that's just the men!

I finally was able to give my testimony as a witness. I was surprised by just how much I remembered considering it was nearly 2 years ago. It was a strange experience, one I am not in a hurry to repeat I have to say. The case was only part heard because the victim wants nothing to do with the case as she is still with the defendant and doesn't want to give evidence. Luckily her evidence is not needed.

So hopefully my bit is done now and I can move on as the whole thing was truly sucking my will to live!

Holly came home from school yesterday covered in little green stamps, all over her face.  She had been on the school sponsored walk and they get a stamp each time they reach a certain place in the route. Holly decided that she would get her face stamped this time, only she didn't think it through cos when she tried to take it off, it wouldn't budge.

Not good when we later had to nip out to the shops. I couldn't stop laughing and she was not impressed when she realised that it could be permanent! (This was me winding her up, tapping into her paranoia telling her that she would look like a goblin for quite a while!).

Tee hee hee, I am so bad but really, I can't help it, she is just so easy to tease.

After our purchases, she dragged me to Thorntons for an ice cream and we sat outside enjoying it. After a while she commented that "we must be nuts, sitting outside in the cold eating ice cream" and I laughed and said "it's not cold, it's roasting hot".  She gave me such a look and then said "well, duh, are you having a flush or is it one of your temperature spikes, cos you are still unwell ya know". I was most indignant at the "hot flush" reference and she fell about laughing as I then went into a coughing fit.

Within an hour of being out we had to head back cos I was feeling a bit dizzy. I hate feeling unwell, I hate that feeling of having no control over this body. I am sure it is a side effect from when I had chemo even though that was years ago.

Holly's boyfriend David was staying over last night. Usually he sleeps in the spare room when he comes to stay but now that room is where Diana sleeps. So last night he slept in Holly's bed and Holly kipped with me.

She was really starting to feel lousy by this time and tearful with it so I rubbed some vapour rub on her back and neck. Once I'd finished she just rolled over with her back to me.  "Eh, what about me" I spluttered and she turned her head and looked at me as if I had grown an extra head! "I thought that you were able to do it yourself" she laughed. "Yeah" I said "if I was a contortionist I could do my own back but I'm bloody not, so get on with it".

More giggling and then finally sleep. Not for long though as I woke to a hand slapping me on the side of the face. Then it's fingers ran around my face like a spider, finally stopping at my ears and one finger was unceremoniously shoved into my ear, waggled about until I yelled. At this point the hand, belonging to Holly withdrew and lay still.

This is why I hate it when she kips with me cos I usually end up being woken with a slap, an elbow to the face, being crushed as she ends up lying practically on top of me or she steals the duvet. The waggling of my ear is a new one which made us fall into heaps of giggles this morning when I told her all about it as she never remembers a thing.

Laughter is the best medicine don't you think?

Ugg!

Jack has totally smitten me with his dreaded lurgy!

All I can say is, if he feels anything as bad as me then he is such a little trooper. Holly now has it. We are dropping like flies in this house! I feel so bad that even chocolate tastes yucky! Now where's the fairness in that?

Today I have court again.....Grrrr!  My dad is looking after Jack til about 1pm so if the case hasn't been heard by then, I am not staying another minute longer. I am so fed up of the whole damn thing and I have lost all faith in the judicial system at this point.

So the only thing that is keeping me going at this point in time, is the amount of people I can pass my germs on to! Wicked eh?

Have a good day my little gigglers.

Five minutes of fame and other stuff

It's been another hectic week.

I finally got Jack's new meds yesterday and yesterday morning he had his first dose. The tablet had to be dissolved in water as it had to go through his Peg. Not a problem I thought, since I do that with a few of his meds anyway but oh boy, the fun I had this morning trying to get the fecking thing to dissolve!  It took over half an hour!

I have to double the quantity next week and then treble it the week after so that is gonna be sooooo much fun for me....NOT! Why is nothing ever simple?

Holly and I headed down to Glasgow on Friday. We were booked into our hotel by 3pm. We were hungry as we'd missed lunch so we looked at the room service menu and both of us fancied a steak in peppercorn sauce. We decided to check out the restaurant first before we made up our minds and after seeing the menu, Holly marched me back upstairs to order room service! She is so bossy sometimes. LOL.

I have to admit, it was a wise choice as it was absolutely yummy. Then I had 40 winks before getting ready to go to the STV studios.

We arrived on time and we were some of the first there but quickly the place filled up. I got speaking to quite a few of the families who had told there stories on film and it was lovely to meet them. When we went 'live' Holly and I were standing right behind the presenter Michelle McManus. We were told to smile into the camera, so there we were, grinning like cheshire cats.

We only managed to stay in that spot for about 10 mins cos then the researcher kept bringing in all the fund raisers and putting them in front of us, until we were pushed right to the back! Then not content with that, they then tried to cram more people in and we were then pushed to the side.

If I'd known that this was our only chance to be right at the front, I would have taken that opportunity to jump up and down, waving like a demented person! Or should I say, like normal for me, tee hee hee.

Monday I spent the day working for the local council, looking at tenders for children's services. It was nerve racking at first but then I soon got into it. It was the most I'd used my brain in a while and I had a headache by the end of the day. Despite this, it was very interesting and I am looking forward to Monday for the next part.

Jack was only half an hour in school yesterday and I got a call saying he had a temperature and was coughing up gunk. Oh joy!

He had been coughing a little bit the night before and in the morning but Jack coughs a lot in general so unless he coughs up something yellow or green I don't worry too much.

Before I left to pick him up, I called the local hospital, where I have open access to the children's ward and told them that I was on my way.  I was there within 15 mins but then when I was getting Jack's wheelchair out of the car, one of the back tyres came off the wheel and I couldn't get it back on. In desperation I pushed the chair only using the remaining 3 wheels and threw myself on the mercy of a maintenance guy who was changing the bulbs on the outside lights at the main door.

It took 5 mins, lots of tugging and grunting, the use of a screwdriver and the help from two other people before they got the tyre on. I couldn't thank them enough.

I spent three hours at the ward waiting to see a doctor and getting antibiotics.  I was glad to get home though as the heat in the hospital totally wipes you out!

Jack spent the whole afternoon coughing and sneezing, mostly over me, so you just know what's gonna happen next eh?

I have court again on Friday. Hopefully this will be third time lucky because this case is truly sucking my will to live. I have had to enlist the help of my dad for looking after Jack that day so I think I might use my situation as leverage to get our case seen earlier. Who knows, it might just work!

Holly and I played back the recording of us at the STV Appeal and we were actually on the TV quite a bit. Well me anyway and she couldn't stop laughing at me popping up wherever and whenever I could, grinning from ear to ear. My lovely daughter said that it was like an episode of Where's Wally?!!

We were both rolling about laughing each time my head popped up grinning. Hee hee hee. What can I say? If this was your TV moment, wouldn't you do the same?

He saved him and I will never forget

He was only 3 but anybody with half a brain could see that he was in so much pain.

He used to clutch at his head, drop to the floor and scream. This had been going on for two years and I was at breaking point.  I had been arguing with doctors at Aberdeen Sick Kids for 2 years about this cyst they had found in his brain. I was convinced that it was causing his balance problems, hearing issues and this horrendous pain. Finally I was able to get a second opinion.

After various tests and scans in Edinburgh Sick Kids, Father of the Year and I talked to the Neurologist who said that he didn't think that this type of cyst (arachnoid) could cause the type of symptoms I was describing. I said that "I was sorry for arguing but I begged to differ". He looked surprised and said " oh but we're not arguing, we're discussing" and I laughed, cos this was new to me!

Later that afternoon, he asked us through to his office. During the walk there, carrying Jack, I felt physically sick in case they were right and I was wrong, cos I truly felt that I couldn't go on listening to my baby scream a second more.

The neurologist was so laid back and therefore I assumed that he was going to tell me that it wasn't the cyst as he didn't look worried or in the least bit perturbed.  So I nearly fell of my seat when he told us that "the cyst had pushed his brain stem right over, had eroded the bone, had stretched 3 cranial nerves so tight, one looked about to snap and that yes they would be willing to operate.

How I didn't collapse after holding it together for two years, I will never know.

Dr Eunson saved Jack's life and I will be forever grateful.

I have been asked to write this post by Looking for Blue Sky in support of Save the Children's Campaign to increase the number of Health Workers in poorer parts of the world, especially East Africa. Children die needlessly every day from simple preventable illnesses.

Save the Children have enlisted the help of the Mummy Blogger Community to get as many people as possible to sign this petition by close of Tuesday when it is due to be presented at the UN General Assembly.

So I am asking these mummy bloggers to help too and anyone else who wants to. Details are to be found here

Southhamsdarling
SkippyMom
Mynx
Julie
Belle
Bouncin Barb 

I don't like this growing up lark!

This last week has seen Holly and I get into a bit of a tiz trying to find drama courses at University.

Believe me, they are few and far between!

She came home very depressed today after going to Gordonstoun School for a University Information Day. So this afternoon was spent knee deep in prospectus, trying to find just the right kind of course. We did find one but we need about 4 more for a back up as there will be lots of people vying for places on that course.

A couple of hours later, she was smiling again and things were looking up.  Now we just need to start filling in the UCAS form and get moving on her Personal Statement and just hope for the best.

All this worry about Universities is very stressful. Neither myself or Father of the Year went to University but we did go to college so this is uncharted territory for me. Now we just have to arrange to go and attend some open days to get a feel for some of the places.

Both of us had a hug in the kitchen tonight. Neither one of us wants to even think about this next step but as much as I will miss her so so much, I know that she has to test her wings and fly the nest.  I will resist the urge to hang onto her leg, begging her to take me with her, just like she used to do to me when she was little. Now I know how she feels!

Ah well, it's a wee while away yet, gotta live in the moment.

Jack hasn't started his new medicine yet. The prescription has been faxed, just waiting for it to come now. He had to have rescue meds twice last week. During one episode he was very sick and I think he must of aspirated some of it as his breathing was horrendous that night.  I spent the evening trying to get him to cough, using his pep mask, physio on his back and an extra long shower. Both he and I were exhausted by the end of the night.

By the next morning he was coughing up lots of dirty gunk and I had to call out the doctor who gave him antibiotics. It was mostly on his right side, which I already knew as I have a stethoscope and had listened in to his chest earlier.  I bought it after the physiotherapist showed me how to listen to his chest with her stethoscope and showed me how useful it was for checking how far down any mucus was in his chest.

I caught it early and by Sunday he was much brighter and went back to school today.

Diana, our lodger, stared college today. She has a cold and was feeling pretty miserable over the weekend but is a lot better today. Soon she will be knee deep in homework and time will fly for her.

I am gonna leave you with a video that Holly has just told me, reminds her of me.

I don't know what she means! LOL

Memories

I can still remember where I was on the 11th September 2001 when I heard about the planes crashing into the World Trade Centre.

Jack was with the carer and Holly and I were in a local pizza restaurant, called Scribbles. We had only been there a few minutes when the waitress came over to take our order. She seemed a bit anxious and agitated and the atmosphere in the place began to change. When the waitress came back with our drinks, she told me that they'd just heard about terrorists flying passenger planes into the World Trade Centre.

I felt total shock and disbelief and tried to hide my feelings from Holly, who was 7 at the time.

Arriving back home and turning on the TV I couldn't really take in what my eyes were actually seeing. It was so unbelievable! It was like something out of a movie but my brain knew this was so very real. For the first time, for me, the world had become a frightening place.

Fast forward to 7th July 2005 and I was in hospital with Jack who was very ill with seizures. I seemed to spend the week crying as my boy was unable to eat properly as he was slowly losing the ability to chew.  He had a TV above his bed which was rarely on but then another parent whose child was in the bed opposite had his TV on and I have a vague recollection of the nurses gathering around his TV to watch with horror the story unfolding.

I was in such an emotionally raw state that to be honest, I never really took it in til later that night when Jack was asleep and I was able to have some quiet time. I was shocked and stunned to be watching such horror again but I was already in an emotional abyss worrying about Jack's condition that the enormity of it didn't really hit me until about a week later.

picture from here

Then it was like I was seeing it all for the first time.   I could not understand how people could carry out these atrocities and justify them to boot.

I still believe that the world is filled with mostly good people. If I didn't, then I couldn't be here and that would mean that they had won. No one should ever forget but the best revenge on these terrorists is to go on living, loving and laughing despite them and all that they stand for.

A week in the life of...

Hello my little gigglers.

How are you all? Hope you are good.

I have had a hectic few days. My Romanian lodger has arrived. Her name is Diana and she is 20.  She was very tired when she first arrived and a little bit tearful but she has settled in well. My house is only a 5 minute walk from the town centre and the college she will be attending, so she has everything on her doorstep.

She has been into college this week for her induction and has met some of the other foreign students whom she is off out with today, exploring the local area. She seems very independent and sure of herself but does ask for help if she needs it.

Jack has had to have rescue meds twice in the last week. The neurologist finally called on Friday evening, so the new medicine has been decided on and now just waiting for the prescription to reach the local GP here. Should take about 5 days. One of the side affects is increased agitation, which will be no fun but usually it wears off after a while, fingers crossed.

I have finally finished my SVQ course. The local council had space for 3 carers on a pilot scheme to give unpaid carers recognition and a qualification for what they do.  I was one of the chosen as was another girl with the exact same name as me! The other lady had to drop out so Lynn and I have been the first two to do this course. I handed in my last essay yesterday and I get to graduate on the 6th October. Woo hoo!

Last week I got a call from the manager of the respite unit that Jack attends. The charity that runs the unit, Aberlour Childcare Trust are going to be benefiting from monies raised by the STV Appeal 2011  Supporting Scotland's Children and asked me if I would be willing to be in the audience of the live show that ends the appeal.

I was totally taken aback to begin with but then she explained that it would be a lot of fun and I would be like a parent representative. I said yes, so Holly and I are off on Friday 16th September to Glasgow to be on the show. I had to call on the services of Kathy and Emma to look after Jack as there is no way I could take him. Holly and I are quite excited about it. Gill, the respite unit manager, told me to put my mobile on silent, on the night, and she would text me if the camera landed on me, to tell me I was on TV. LOL

Another thing I have been asked to do this month is to be an evaluator on the panel that will consider tenders for respite services for children in our area. I am extremely nervous about this one but it will be so so interesting.  Unfortunately I can't tell you anything about it as everything has to be confidential. I can say that it is going to take up 3 whole days of my time this month starting on the 19th.

I have been afflicted by a sickness lurgy this week. I haven't actually been sick but have been experiencing waves of nausea, feeling dizzy, going hot and cold and just generally feeling UGG!  It sucks big time and I wish it would pass...quickly! I hate being ill.

Hope you are all having a great week :)

Nasty little beasties

As I said before, I have an absolute terror of wasps.

I've been stung once, under my arm and it was like an electric shock surged up my arm. I was sitting on the bus at the time and one of my sisters, Kathleen, nearly fell off her seat laughing as I was clutching my arm and my chest, thinking I was having a heart attack!

Years ago, I was chased by wasps whilst I was trying to enjoy an ice lolly in the park with Father of the Year and Holly, who was about 2 at the time. I tried to bat at them but they took no notice, so I tried to move out of their way but they kept following me, persistent little buggers.

In the end, after being dived bombed by about half a dozen of the nastly little things, I took off running, wasps in hot pursuit and the laughter of Father of the Year ringing in my ears! Realising that I wasn't able to shake the little f**kers, I took desperate measures and chucked my ice lolly over my shoulder as I ran. Within seconds they had descended on my poor discarded lolly and I was able to stop my attempt at beating the world record for the 60 metre sprint!

I was traumatised! Meanwhile Father of the Year is nearly ending himself laughing and Holly is giving me a row for dropping litter!

I don't know how I developed this phobia but I do remember my Mum being terrified of them and was often to be seen, screeching and leaping about, flapping her hands at the wee beasties and we, her kids, would think it was hysterically funny. She hated spiders too, which would also explain the spider phobia!

Who would have thought these wee beasties could cause so much trauma?

My worst encounter with wasps came about just after I passed my driving test.  I didn't learn to drive til I was 28 as I lived in a big city and the buses service was so good, you didn't need to drive. Then I moved back home after having Cancer and I realised how difficult life was in a smaller town and no car.

So I had passed my driving test 3 months previously, was 3 months pregnant with Holly and life was good.
My sister lived in the seaside town of Lossiemouth and she'd asked me to pick up my nephew Derek (who was 5) from school and take him back to our Mum's house.

It was only a short journey (8 mile round trip) and it was a lovely day so after picking up Derek, I took him down to the waterfront to get us an ice cream. I had our dog with us and Derek was giving her lots of attention while I bought the ice creams.

I had only a little bit of my ice cream left so I started up the car and headed home.  There were roadworks on the road out of town so were were going pretty slow, about 30 miles an hour and we'd the windows down and Derek was chatting away.  We'd only been on the road about 5 mins when this wasp flew in my window and started to buzz about my face. Frozen with terror, I whacked it with my hand and it fell to the floor between my legs!

I could still here it buzzing so I knew the little bugger wasn't dead and was just so terrified that it would crawl up my leg, so I started stamping all over that area with my foot. This took place over a matter of seconds and then I heard Derek's little voice crying out "Auntie Lynne!" in a traumatised voice and I looked up to see us hurtling towards the back of a lorry which had stopped at the road works lights.

I braked like crazy but it wasn't enough cos then there was an almighty bang and the front of my car was crumpled, like it was made of paper. I sat stunned for all of 10 seconds, then asked Derek if he was all right and got out of the car.

I opened the back door to check on my pooch, who nearly knocked me over in her haste to get out and proceeded to run about like a whirling dervish all over the road, with me in hot pursuit!

I finally caught her and then got Derek out of the car. By this time, the workmen from the water lorry, which coincidently did not so much as have a friggin scratch on it had come out to investigate the "little bump" they'd  felt and the subsequent noise.

Little bump? Little bump? WTF? It sounded like someone had ripped the front of my car off from where I was sitting! Once they'd realised that my car was a mess and their lorry wasn't they offered to drive us into town and they very helpfully moved my car onto the grass verge at the side of the road.

I was shaking like a leaf, tearful and totally traumatised but I couldn't help notice how excited Derek was at getting a ride in the lorry. He was first in the cab and they asked me to lift the dog up into it and that's when I blurted out that I couldn't lift that high cos I was pregnant. Next thing, the dog, much against her will, was being unceremoniously hoisted into the cab and I was last to get in.

The guys were really nice but all I could do was cry! Meanwhile Derek is nudging me and telling me how cool this was, how much fun and how he couldn't wait to tell his pals at school the next day!  He asked the guys lots of questions while I wondered how the hell I'd gotten here. That F**king wasp!!!!

I spent the next 5 days recovering from whiplash. I was also bleeding and they suspected a miscarriage so I was sent home to wait it out. My trauma knew no bounds and for days I kept thinking that I could have killed my nephew. He on the other hand was telling this story to everyone and anyone who would listen and he was in his element! Wee bugger!

When it came to filling out the insurance forms, the question "whose fault was it" came up so I put "the wasp"  and I thought Father of the Year was gonna die laughing! WTF?

Seems the wasp couldn't be responsible cos it didn't own a drivers licence!!!!

This and that

Jack is in respite tonight and tomorrow. His seizures remain the same so I am just waiting to hear from the Neurologist to discuss the new epilepsy medicine.

I am a "sad little fairy" according to Holly. Fairy is her pet name for me because I am small and dinky (in her eyes) and I remind her of the little people like Leprechauns, Fairies and Sprites! Funny funny girl. But she is right, I have struggled to smile this past week as the stress has been getting to me a bit and the huge responsibility for Jack's well being has weighed heavy on me.

I rarely think about it normally but when it seems like everything is happening at once, something has to give. So I am being kind to myself during this respite by doing very little and spending quite a few hours curled up on the sofa watching lots of day time TV and old movies.

Holly got a lovely surprise through the post this week....

Woo hoo!!!

I didn't know that they got a certificate! Holly knew but she had forgotten about it. Along with the certificate came a letter explaining that there were 3 levels to the graduation: pass, merit and distinction, so we were mega excited that she got the highest accolade. I will admit, since I know you wont tell anyone, that I did a wee dance and ran around the house whooping and hollering much to Holly and Jack's amusement.

I am getting a lodger on Friday. She is a foreign student who is coming to our local college from September to January. In preparation for her coming, I had a new carpet put into her room and had quite a bit left over. As I was going to bed the other night, I came across Holly trying to walk the length of it, trapeze like so we spent the next 5 mins having such a laugh messing around on top of it.

the poor unsuspecting carpet

the trapeze artist

I believe I can fly!!!

Oh dear, what can I say? Little pleases little minds!

One of my friends got married a week and a half ago. Congrats to Jeanette and Ian who, I think, had a lovely day.  I didn't get a lot of photos as I had Jack with me and my time was spent seeing to him but here are a few.

each table was named after a jar of sweeties...we were the Heart breakers

Balloons on the tables

Jack with his trendy neckerchief on

Glamour puss!

Double Trouble

Jack behaved himself until it came to the speeches. He waited til the Groom was half way through his speech and then he had a cracker of a seizure during which he was jerking so much that he ended up diagonally across his wheelchair, was sick and doubly incontinent. I had to take him out of the hall as I didn't want everyone to see him like that.  I took him home after, as Granny Mac was babysitting for him so that Holly and I could go back for the dancing at night.  It was a really good laugh. Good food, good company and my feet hurt by the end of the night with all the dancing!

Or was it the shoes?  Apparently they were the talk of the wedding. The photo doesn't do them justice but believe me when I tell you they were gorgeous!

The three of us just after the service. As you can see, I don't do dresses!

Have a lovely day my little gigglers.