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.
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.
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.
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"!
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!!!
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.
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| 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.
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| Jack and I on the bike |
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| Jack's birthday with my mad friend Kathy dressed like a pirate |
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| The pirate ship cake I made |
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| The Gypsy Caravan |
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| 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"!
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| Koda just after his operation |
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| Cuddling up to Loki |
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| So cute |
No rest for the wicked they say...............yep that's me, a total badass!!!
Hi there. I haven't been blogging, so it's lovely to be able to come here right from Facebook! A lovely selection of photos for us to see. Loved the one of the two dogs snuggling together. I am so pleased that Jack seems to be quite well at the moment. What a good idea to get the Carers in. I really don't know how you have coped all this time. I can't tell you how sad I am to hear about Holly's condition. She is such a lovely girl and doesn't deserve this. I will pray for some relief for her. Sending you hugs x
ReplyDeleteI know that is the great thing about FB. Thank you for the prayers, much appreciated x
DeleteGood to know Capt. Jack is faring better these days, but what a distress about poor Holly. I feel [and completely understand] your distress] with the doctors. My rheumatologist was so condescending she actually patted me on the head at one appointment. I grabbed her hand and told her "You may have more education than me, but I am old enough to be your Mother. I don't suggest you do THAT again." And well...let's just say I fired her after that. And don't get me started on the exercising they expect people with arthritis and hyper mobility to do...it's a joke. I am just so sad that someone as young and as vibrant as Holly has to endure this. But just like Capt. Jack, she is her Mother's child through and through, and this will sustain and help her go forward. God Bless the three of you. Love you all - and wish I was there to help you peddle the bicycle - actually looks like quite fun. [And knowing me - I would probably get three feet and Jack would be laughing his behind off. Ah, it'd be worth it to get one of his gorgeous smiles.]
ReplyDeleteHugs and love Lynnie. Many hugs and much love.
I know, don't get me started on doctors!!! When you get a good one, you really have to hang onto them. You would love Jack's bike, would make you laugh so much but also way out of breath too! xxx
DeleteWish I could send you the rheumatologist we saw with Peter - he was so nice . Mind you, the ortho guy we saw sounds just like the guy you saw - not in the least bit interested.
ReplyDeleteAs if we have nothing better to do!!
Glad to see!! you back on here
I know, it totally depends on who you get :(
DeleteNice to see you back online! I've been thinking about you and your family.
ReplyDeleteEver so glad to hear that Jack is doing well. Happy 16th to him! Love the cake and fun you had for this Birthday!
Definitely sounds as if Holly has had a hell of a rough time! Poor kid. Hope you all get it sorted out soon!
Good for you letting FOTY see what life is really like at your house. One would hope that he'd participate more after seeing that but he wouldn't be FOTY if he actually did right?
Hyper mobility? Never head it classed like that, but the whole "loose joints" is a part of what my daughter has an issue with.
Keep on trucking lady!
Hi Kellie,
DeleteNo it has made no difference to Foty!!! lol As for the loose joints, it is a total nightmare isn't it?
I really don't understand doctor's acting as if they don't believe a word out of patients mouths, being rude or condescending. While we all *need* doctors, they can very easily lose patients (and money) to a doctor down the road with better bedside manners. In this day and age, you'd think they'd have courses on how to deal with people and how not to lose your patients because you're a douche. Hope Holly feels better and that the doctor stops being an arse.
ReplyDeleteI hope so too but the likelihood of that doctoring changing his ways is zilch! Holly is improving though :)
DeleteI know what you mean about having no time to blog, but really glad to hear from you. I've missed your news :) Your new puppy looks so cute!
ReplyDeleteI know, I really have to make more time! Hope all is well with you :)
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ReplyDeleteHello! My son is going to Edinburgh in Jan 2015! for school!
ReplyDeleteOh wow! That is about a 3 and a half hour drive away from me. He will love Edinburgh! So steeped in history. Holly is at Uni in Musselburgh which is not far from there :) When is he going?
Delete