Wednesday, 31 December 2014

Where Did 2014 Go????

It's Hogmanay here in Scotland. New Year's Eve to everyone else and as it gets closer to the end of the year my only New Year Resolution is to try and blog more, as let's face it, this year has been a bit dire!

In my defence, I have been struggling.

I haven't been able to pick myself up since last Christmas when Jack was in hospital and ended up on CPAP. I had coped with all Jack's horrendous health issues up til then but this one just undid me. He has taken to the CPAP without a problem but for me it was the "straw that broke the camels back". I have struggled to pick myself up this past year and at times feel like I am walking through quick sand.

Add to that, Holly's illness and it has been hard at times to keep a smile on my face. But I do!

You know it's bad when you avoid Jack's palliative care nurse cos you know that you will cry if she asks how you are!!

Winter is a tough time anyway as Jackyboy fights off all the winter bugs so most of October and some of November was a write off as he was ill with a chest infection that would not clear. After 3 lots of antibiotics, he was put on one which I had to give him for 2 weeks whilst keeping him out of direct sunlight. You'd think that would be easy enough in the winter but no. The winter sun liked to stream through my living room window so for two weeks we had to have the curtains closed so that Jack didn't have the side affect of sun burn!! Such fun.....NOT!

Jack's seizures have also become a worry again so he has been started on a 3rd medicine to try and calm them as they are quite fierce, long lasting and he likes to not breathe during them! Nothing like keeping me on my toes.

To add to the fun, Jack is having more episodes during which he just doesn't breathe whilst asleep during the day now too and the soft collar which the hospital gave me is no longer doing it's job as it isn't deep enough to keep his head in the right position to keep his airway clear. The Physio gave me some more but they were the same size so I think I am going to have to get creative and come up with my own version.

BUT.....on the plus side, despite all that, my boy has gotten so tall and he has filled out! That boy has major muscles on the upper half of his body. It's all that rolling around on the floor and lifting himself up into a kneeling position and the wee monkey is even attempting to crawl! He has astounded everyone with his ability to bounce back, no matter what life throws at him.

Holly and Jack having a moment

With my girlie at the zoo on a  Rachel House day out

and with my boy
Jack showing just how much balance he has...check out the muscles!
Just tonight, I was wiping his mouth and he took the cloth from me and tried to do it himself! Holly and I couldn't stop smiling and then later when I was cleaning his mouth out using mouthwash and a toothbrush, he reached up and took it from me moving the toothbrush around his mouth himself!!!

My heart just melts every time that gorgeous boy of mine shows an interest in helping me. It might only be fleeting but I hug it to me and store it away in my heart to sustain me during the harder times.

We have also set the ball in motion re Guardianship of Jack. Now that he is 16 and classed as an adult, in order to make decisions on his behalf I need to apply for guardianship. Hopefully it will all be done and dusted by his 17th birthday and that will be another stress out of the way.

In October I applied to get on a course as an assessor for Scottish Vocational Qualifications where I have to put two unpaid carers through their SVQ in Social and Health. Also connected with that, I had a trip to Glasgow to attend the award ceremony where the Moray SVQ Centre in partnership with Quarriers Carers Support Group won two awards for their work putting unpaid carers like myself through that qualification. Since I was one of the first carers to get their award and subsequently the first carer to get on the Assessors Course, I was invited along!

My pumpkin for Halloween

It was so much fun. I even wore a dress... gasp shock horror! The presenter of the ceremony was Kaye Adams from the TV show Loose Women and she took a real shine to my shoes bringing them to the attention of everyone in the room! So when we won the award for Innovation my shoes got centre stage much to Kaye's delight. Later I had my photo taken with her but instead of standing next to me, she got down on her hands and knees saying "I bow to the shoes"! She was so down to earth and such a laugh. That was the highlight of the evening and the cocktails at The Corinthian was a close second.  I know how to party ya know!

My red shoes!

Kaye Adams bowing to the shoes!!!

The course is hard work, time consuming but also very interesting. There was a moment, about a month in, where I thought "whose bright idea was this???" If it wasn't for my sister, who has moved back home, helping out with Jack I would have fallen by the wayside long before now.

I have met so many interesting people through this course and I am really enjoying helping my candidates who have already realised that I am a bit mad! But fun with it!

December was such a busy month that it passed in a blur with Jack having 3 hospital appointments in one week! What is that about eh?

Christmas was quiet but lovely. Jack partied til 11.30pm even though in the run up to the day he was alseep by 6pm every night. We also went to the panto at Eden Court in Inverness and we got moved to the House Box as Jack's view would have been restricted in the seats we had. They were so lovely and we very much appreciated it.

Christmas just gotta have them

Holly helping Jack to open his presents

Sporting his Batman onesie...a christmas present from his Aunti Kathleen

Pirates of the Caribbean spoke guards to pimp his wheelchair

Personalised Wheelchair number plate.....what a cool dude!

As 2015 creeps closer Holly and I have decided to take the bull by the horns and take Jack to Disneyland Paris for Christmas next year. He got loads of money for his birthday and the last two Christmases so we may as well spend it on something that we will always remember.

So as 2015 draws to a close, I want to wish you all a very healthy and happy New Year. I hope you continue to share this roller coaster ride with us and I look forward to sharing more of my crazy world in 2015.

Friday, 8 August 2014

Hello? Anybody out there.

It has been MONTHS since I last blogged!

Not because I didn't have anything to say, in fact I had so much rattling around inside my brain but not enough hours in the day to write it all down and make sense of it all.

Firstly, after a shaky start to the year, with a few hospital visits and an exciting ambulance ride, Jack is keeping well. He had an overnight sleep study in May and his Cpap machine is doing it's job so it didn't require any tweaking. Phew! After a 2 year wait, he finally got a wheelchair with a moulded seat so he is much more settled in his chair.

Jack's new wheels

His bedroom has had a total makeover but that is definitely a "stand alone" blog post for later. I promise it will be worth it.

Holly, on the other hand, hasn't been so well. She was diagnosed with Hyper Mobility and Arthritis and over the last two months has been struggling to walk, so much so that she has had to use a wheelchair over the last three weeks. We managed to get an emergency appointment this week so off we went to Aberdeen. Ironically this was the first day she was able to walk so the consultant didn't see her at her worst.

I wish he had because he looked totally bored and uninterested throughout the appointment and berated her by saying "the whole point of getting the physio to see you was so that you could follow a programme of exercises" and when she told him that she hurt herself while doing them he said "well, you do have hyper mobility!".  Aaaaaaahhhhh!!!

At this point I wanted to scream because how in hell is she to do exercises if the slightest thing can cripple her??? It doesn't make sense to me that in trying to build up the muscles she has to go through even more hell for very little gain. I asked him if she had Hyper Mobility Syndrome and he patronisingly told me that Hyper Mobility was a spectrum but wouldn't be drawn on where in the spectrum she was. He grudgingly took bloods and then we left. I can see there is going to be a battle on our hands to get proper answers and it doesn't look like he is the one to be giving them!

There are times I wonder.....what bloody next???

While all this has been going on, I have moved Holly out of Halls at Uni and moved her and her friend into a flat. Her friend Georgia is staying there at the moment and Holly will join her at the start of September. Such is my tiredness these day that I enlisted the help of Father of the Year on one of his rare visits home, to help us pack up Holly's room.

Holly and Georgia outside their flat

Oh My God......I deserve a medal....a whole day in his company and I was like a coiled up spring but I soldiered on! He did nothing but moan about all his aches and pains and at times I had to bite my tongue to stop myself from snarling at him. Holly had the flu so her tolerance of him was at an all time low. I tell you it was a long day believe me!

Earlier in the week, he'd emailed to ask if he could come and see Jack and being the hilarious but devious person I am I said he could and that if he wanted, he could help me put Jack to bed.

Suffice to say FOTY was rather the worse for wear after the hour and a half it took to get Jack into bed. Normally I just give Jackyboy a quick wash at bedtimes but FOTY wasn't getting off that light... so we showered him. There was lots of huffing and puffing, sweating and moans about his aching back by the time we were done. Holly and I were trying our hardest not to laugh! I know, I know, totally mean right? NOT!!!! Once we were done he commented "you do good you know".
Aww, geeze, really???

I couldn't hide my mirth later on that night when Holly hit him in the face with a ball, knocking his glasses off and upsetting him big style! Cue me helpless with glee on the chair. Ah Karma is a beautiful thing.

A girl has to get her kicks somehow!

It has been a busy year so far. Jack turned 16, Holly and I stayed in a Gypsy Caravan for her 20th birthday, we said goodbye to another student, Tori, who introduced us to the most un politically correct game ever (Cards Against Humanity) but it was so much fun!! I bought Jack a new bike because he was no longer able to go on his old one and it will definitely get me fit cos I am the one doing all the pedalling.

Jack and I on the bike
Jack's birthday with my mad friend Kathy dressed like a pirate

The pirate ship cake I made

The Gypsy Caravan

Inside the caravan

I have been trying to empty my house of all the stuff that I have accumulated over the years but have not had the time or inclination to get rid of. I am about half way there so hopefully by Christmas the house will be a bit more presentable. I need to start decorating because my house is looking a bit shabby now after 12 years and the only way to fund it is by selling some of our old stuff.

Holly has a secret room leading off of her bedroom and over the years it's been a playroom, a den and now we are making it into a more grown up space where we can be creative. That way she wont leave all those unfinished projects lying around the house and I wont have to get mad when I fall over them! It will be somewhere for me to make things too as I have loads of projects that I have had my eye on but have never had the time to do them. That is going to change so watch this space.

The garden is still being tackled from last year and finally you can now see that I have a greenhouse at the end of the garden. Just need to empty it and start growing things in it. My garden is full of well established plants but very little flowers so I planted loads of wildflowers at the front and side of the house and they are just starting to flower. They are so pretty and are already starting to attract the bees and butterflies. I am also trying my hand at growing tomatoes, so far, I haven't killed them so that's a start! My friend Kathy has enjoyed laughing at my attempts to garden but you have to start somewhere right?

Finally after 3 years of fighting, I am getting carers in to help me put Jack to bed so I have been busy training them up. I forgot how tiring that was but it will be worth it. It's very difficult to get used to having so many different people coming into your house. Especially when that is probably the only place where you don't have to pretend on the bad days that everything is ok.

Only the plus side, it's nice to see a friendly face on those days too.

To add to the madness we have a new addition to the family...a Sprocker puppy...who is totally mad so fits right in. His name is Koda and he has given us all a reason to smile when things have been extremely tough. He has certainly entertained the other two and there has been lots of mischief in the garden! Poor Koda had a problem with his eyes so had to have eye surgery on both eyes when he was 3 months old and had to wear a cone for 3 weeks!

Believe me when I tell you that a puppy wearing a cone, catching the back of your legs at great speed is so bloody painful! He nearly brought me to my knees a few times!!! I was so damn glad for him to be rid of the "cone of shame"!

Koda just after his operation
Cuddling up to Loki

So cute
The school summer holidays are nearly over. We have a week to go before the kids go back to school. Jack will have been off 7 weeks by then as he was ill the last week of school. I do not know how I survive these holidays but I do! This one has been doubly tough because of the hard time Holly has been having with her own mobility

No rest for the wicked they say...............yep that's me, a total badass!!!

Wednesday, 15 January 2014

You only get what you can cope with..........what a crock of shit!

Since my last post, my life got a little crazier, surprisingly...NOT!

Jack and I were due in Rachel House for a few days from the 18th November. He had been unwell previously, was still a bit chesty and had just finished another dose of antibiotics.

The first night, I was called by the hospice staff as he wasn't breathing very well.

I came downstairs thinking it was more of his noisy obstructive breathing but no, he wasn't breathing much at all and not even trying to, which was ten times more scary. His lips and skin were a dusky colour which meant he wasn't getting enough oxygen. We changed his position in the bed a couple of times to open up his airway and roused him from sleep and he started to take deeper breaths therefore improving his colour. Phew!

Once he was a better colour I went back to bed and the hospice staff assured me they would sit by his bedside the rest of the night.

The next day, all seemed well until around 11.30 am when he had another episode of not breathing and looking dusky. His neck collar wasn't doing anything to help so the hospice doctor was bleeped to come and have a look at him.

Meanwhile, Holly and her friend Georgia were on the bus from Edinburgh coming for a visit so I had to nip out and pick them up. When we arrived back the doctor had been to see Jack and was coming back for a chat with me. It was decided to give the hospital a ring, as Jack's chest sounded clear and there seemed to be no reason for these episodes. He was back shortly to say they were sending an ambulance for Jack.

As I was the only one who could drive,  Holly went in the ambulance with Jack and Georgia and I followed behind with all Jack's stuff.

We spent 5 hours in A & E and were eventually transferred to the Respiratory Ward just after 8 pm. Jack seemed to go a bit downhill when we reached the hospital, having seizures and producing lots of saliva which he was then swallowing! His chest was getting quite rattly so I had a feeling he wasn't going to have a great night.

This photo says it all

The next day when we arrived back at the hospital they had put an airway into his nose as he was having such bad episodes of obstructive breathing. He also had two bugs in his chest...he really is a greedy boy!

It was a hard two weeks, during which it was decided that he would need the NP airway in on a permanent basis. Holly and I were quite distraught about this as it wasn't the most discreet looking thing and it spread out from his nose across his cheeks, covering most of his beautiful face.

Jack, though, had other ideas! Due to the bugs in his chest, it kept getting blocked and required regular changing which turned out to be an ordeal for all involved as he fought them and even learned to use his tongue to block it. My boy is so clever! As if that wasn't enough to contend with they could only get it down one nostril as the other one had a little kink in it making it extremely difficult to pass a tube down.

At the end of the two weeks, I told the consultant that this really wasn't working and could we go onto Plan B, whatever that was but I had a fair idea.

Trying on my new hat....he was not amused! He reminded me of the Grinch! So cute

We had a meeting shortly after. Plan B was CPAP which I kind of expected and about an hour later, we tried it while he was quite calm and awake. He didn't even struggle, which nearly broke my heart and once the mask was in place, machine switched on, he just rolled towards me for reassurance and I hugged him. He tolerated it for 30 mins lying in my arms. The respiratory nurse, Linda, was so impressed with him, he was such a star. Apparently it can take months for kids to get used to it.

That's the way with Jack, he knows when he needs something, so he doesn't fight it.

The best bit of all was he only has to use it at night so less invasive than the NP airway. The consultant said that it would take a week for Jack to get used to the cpap machine and for me to be trained. So my goal was a week from that day and we weren't going to stay a day longer!

After 3 weeks in hospital we managed to get home. Jack was very tired so I kept him off school. The first week home was a bit hectic with lots of phone calls, appointments etc. We popped into school for a morning and he was able to take part in his play, much to his disgust, which made Holly and I fall about laughing!

Unfortunately we missed out on respite and our other dates at Rachel House but to be honest, I felt home was the best place for us.

I managed to get out for the day with Tori (my new student) and although the weather was pretty dire, we managed to visit the Highland Wildlife Park where we had a stand off with two Bison who stood in the middle of the road and were refusing to budge! Intimidating but hilarious.

That same night, after we got home, Kathy surprised me with a visit. I had no idea she and the kids were coming but it made me cry! Holly arrived home in the early hours of the Sunday morning too, so my weekend was complete.

Christmas was hectic. The house looked like a winter wonderland by the time Holly, Tori and I were finished!

Jack seems to like the tree

Even the dogs were decorated!

Tori decorating Jack's hoist

Holly with her favourite girls

My dad was coming for Christmas so Holly and I had a baking frenzy on Christmas Eve whilst Marion the carer was in. The two of us haven't baked for years. It was loads of fun. My Dad stayed over for two days and we had such a great time, he is still talking about it today.

Jack slept through most of Christmas Day but came to life around 5 pm so we grabbed that window of opportunity and there was a chaotic hour of present opening til he got fed up. He got loads of tactile stuff that either had flashing lights, squeaked or just felt nice.

He was just too tired and wanted to be left alone

Holly got loads of goodies, her favourite being the Alice In Wonderland bag that was made for her by the lovely lady at Big Daisy Kiss Boutique. She has been desperate for one so I thought it would be a lovely surprise.

Speaking of surprises, Holly and her friend Georgia secretly bought me a present and organized friends and family to contribute to the buying of it over a period of 3 months. She managed to get it home as well, all without me seeing it. Her only comment about it was "you know mum, you have some really really good friends and you are well loved, that's all I am going to say!".

This represents the three of us!

It's a Jennifer Hogwood original and I just LOVE it!

He was a happier boy later in the day

New Year's Eve was a bit eventful. Jack had to have rescue meds after having 4 seizures in 5 minutes so he was totally out of it for the rest of the day. Holly had been unwell since she got home so she took to her bed in the early evening too. It was a crap day all round!

Now though it is 2014 and I am looking ahead to a new year.

This year Holly will be 20 and Jack will be 16...eek! Surely I am not old enough to have kiddies that age? Where has the time gone?

Jack's National Insurance number came in this week which means he can now officially get a job.  Holly and I had such a laugh coming up with the ideal job for him.

We both think that he would be ideal as a tester of toys! He is so rough with his; dropping them, rolling on them, bursting them etc so any toy that could withstand the "Jack treatment" would pass the grade! He would be brilliant at it! Hee hee hee.

Holly also suggested he would be great as a tester of special needs equipment cos I am sure they test most equipment with someone who just lies very still! Jack, who wriggles about all the time seriously puts his equipment through a punishing regime on a daily basis!

So it looks like my boy might have to start earning his keep when times get hard! Now that would be something eh?

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