Hey all :)
Ordered Imogen's Buzzy this morning :) We've gone for the LadyBuzz with the Bee-Stractors to hopefully make things a little easier.
Hydrotherapy did not go as well as anticipated. I think Imogen is afraid of water. I'm not sure why, but there is definitely something there. The Hydro room was boiling!!! I could have quite happily stripped and got in the pool too!! Riley ended up with just his jeans on in there as it was just overpowering!
We're hoping as she is going to be having weekly 30 min sessions that we can overcome this fear and we are going to take her swimming every weekend as a family to hopefully conquer it.
MTX day tomorrow. Community Nurse is coming out at 2pm to do the injection and fill in all the relevant paperwork. I'm so sick of paperwork! I seem to spend my life filling in forms for something or the other!!
Trying to contact the Consultant's Secretary today as well, as when Imogen gets her next blood tests I would like them to check her immunity to measles. She had the original jab at 13 months, but was due a booster in a few weeks. But due to MTX she cannot have any live vaccines. I just want to check that she's at least a little bit covered!
X
Thursday 25 April 2013
Wednesday 24 April 2013
Hydrotherapy Day
Imogen has Hydro this afternoon. She's looking forward to it which is nice. It'll be nice that she'll have a treatment that she enjoys rather than all these invasive treatments that hurt her.
We finally got our DLA decision this week too... We got awarded!! I am amazed, as everyone I have spoken to, told us that it was doubtful to be awarded first time. She will now be getting High Rate Mobility and Middle Rate Care. The money will be used for hospital trips and things that Imogen needs. We are also going to buy the Buzzy out of it when it arrives in my bank.
Joints don't seem to be swelling so far, but I think we are just waiting for them to come back up. Hopefully they won't but with 5-7 weeks before the MTX begins to work efficiently, I have a horrible feeling that another pulse of IV steroids may well be on the cards.
But PMA and hopefully Imogen is now going to feel better as we get her condition under control.
More later after Hydro
X
We finally got our DLA decision this week too... We got awarded!! I am amazed, as everyone I have spoken to, told us that it was doubtful to be awarded first time. She will now be getting High Rate Mobility and Middle Rate Care. The money will be used for hospital trips and things that Imogen needs. We are also going to buy the Buzzy out of it when it arrives in my bank.
Joints don't seem to be swelling so far, but I think we are just waiting for them to come back up. Hopefully they won't but with 5-7 weeks before the MTX begins to work efficiently, I have a horrible feeling that another pulse of IV steroids may well be on the cards.
But PMA and hopefully Imogen is now going to feel better as we get her condition under control.
More later after Hydro
X
Sunday 21 April 2013
So far, So Good
Imogen had her Methotrexate injection (hereby known as MTX as fed up of having to type it lol) on Friday morning. So far so good, no adverse side effects which is good. It's a low dose of chemotherapy to try and knock out her immune system so it stops attacking itself. Weekly injections for at least TWO years, which is not so good, but as always we will manage.
We are looking at getting Imogen a Buzzy http://www.buzzy4shots.co.uk/index.html
They are supposed to help with pain from injections, blood tests etc. To my readers, have you used one? Did it work for you?
I will write up a review once we have got one and tried it out.
But Imogen has been in fine form these last few days. She spent time today running around with her older brother and her cousin :) It is lovely to see, and she's so happy and cheerful at the moment.
The steroids have started to fill her face out though, she is beginning to look a little chubby bless her :)
Have got to ring the Dr's tomorrow as Imogen is extremely constipated due to the amount of medication she's taking :( She's just woken up due to the fact that she cannot poo!
But in the grand scheme of things... to be honest it could be much worse!!!
X
We are looking at getting Imogen a Buzzy http://www.buzzy4shots.co.uk/index.html
They are supposed to help with pain from injections, blood tests etc. To my readers, have you used one? Did it work for you?
I will write up a review once we have got one and tried it out.
But Imogen has been in fine form these last few days. She spent time today running around with her older brother and her cousin :) It is lovely to see, and she's so happy and cheerful at the moment.
The steroids have started to fill her face out though, she is beginning to look a little chubby bless her :)
Have got to ring the Dr's tomorrow as Imogen is extremely constipated due to the amount of medication she's taking :( She's just woken up due to the fact that she cannot poo!
But in the grand scheme of things... to be honest it could be much worse!!!
X
Thursday 18 April 2013
Ahhh Bliss!
Imogen has gone to nursery!!! 3 hours of blissful me and Riley time! With Easter Holidays Imogen has been off nursery for 3 weeks. It is lovely to have the time just me and the boy :)
Imogen had all three doses of IV steroids this week. It finished yesterday. She goes for her Methotrexate injection tomorrow at 10 am, then it's just waiting for it to begin working. I need to get onto the Community Nurses and find out if it has all been arranged for them to come out and give Imogen her injection at home. Although it's going to be tricky working it as she's at nursery 8.45-12.30 then comes home for an hour and then hopefully will be off with her brother to another nursery at 2pm so I can go to work.
Yes I am now a working mum!! I had a job interview on Monday and they offered me the job. Hours are slightly akward, but am trying to get the kids into a nursery just down the road from me for 2 afternoons a week so that I can start work at 3.30 and daddy can pick them up when he finishes.
Seems to be a pretty positive week this week. Hopefully it continues :)
X
Imogen had all three doses of IV steroids this week. It finished yesterday. She goes for her Methotrexate injection tomorrow at 10 am, then it's just waiting for it to begin working. I need to get onto the Community Nurses and find out if it has all been arranged for them to come out and give Imogen her injection at home. Although it's going to be tricky working it as she's at nursery 8.45-12.30 then comes home for an hour and then hopefully will be off with her brother to another nursery at 2pm so I can go to work.
Yes I am now a working mum!! I had a job interview on Monday and they offered me the job. Hours are slightly akward, but am trying to get the kids into a nursery just down the road from me for 2 afternoons a week so that I can start work at 3.30 and daddy can pick them up when he finishes.
Seems to be a pretty positive week this week. Hopefully it continues :)
X
Saturday 13 April 2013
What a Week...
It's been a very long week this week.
We saw the Paediatric Registrar on Tuesday, who agreed that Imogen had improved enough to begin the Methotrexate. However nobody on the ward was qualified to do it this week as it needs to be administered by a Chemotherapy trained nurse. It is now set for next Friday at 10 am. It is still going to take another 6-8 weeks to begin working.
To continue her treatment Imogen was put on oral steroids to help deal with the swelling and painful joints. However, sadly this has not been the case. As of this evening, Imogen is back in full flare of all 8 joints.
We go back up for another round of IV steroids on Monday, Tuesday and Wednesday, she has physio on Thursday and then Methotrexate Friday. Oh joy another all weeker :(
X
We saw the Paediatric Registrar on Tuesday, who agreed that Imogen had improved enough to begin the Methotrexate. However nobody on the ward was qualified to do it this week as it needs to be administered by a Chemotherapy trained nurse. It is now set for next Friday at 10 am. It is still going to take another 6-8 weeks to begin working.
To continue her treatment Imogen was put on oral steroids to help deal with the swelling and painful joints. However, sadly this has not been the case. As of this evening, Imogen is back in full flare of all 8 joints.
We go back up for another round of IV steroids on Monday, Tuesday and Wednesday, she has physio on Thursday and then Methotrexate Friday. Oh joy another all weeker :(
X
Saturday 6 April 2013
Yay!!
Imogen finished her last dose of IV steroids yesterday! She also had her eye test which shows no signs of Uveitis!!
She is now on 4 days of oral steroids which finish on Tuesday. We go back up to the hospital Tuesday morning to see the Paediatric Registrar, who will give us the next lot of steroids and hopefully a date for her first Methotrexate injection. She is going to be on the steroids for two months as the Methotrexate will take about that time to work.
Injections once a week are going to be tough, but I'm debating learning to do them myself as I think it will be less stressful for Imogen if it can just be done at home by me. As much as I hate the idea, I'd rather make the whole thing as stress free for Imogen as possible.
Anyway, we have noticed a definite improvement in Imogen herself after being on the IV. The swelling has definitely gone down, it's not completely gone, but it's so much better than it was. She is moving so much better as well. Although we are certainly getting some mood swings, she is a lot happier and we're not having so much crying and just general upset.
It's almost like I have my little girl back :)
I am so proud of the way she is just getting on with it all. She's dealing so much better than I would!!
X
She is now on 4 days of oral steroids which finish on Tuesday. We go back up to the hospital Tuesday morning to see the Paediatric Registrar, who will give us the next lot of steroids and hopefully a date for her first Methotrexate injection. She is going to be on the steroids for two months as the Methotrexate will take about that time to work.
Injections once a week are going to be tough, but I'm debating learning to do them myself as I think it will be less stressful for Imogen if it can just be done at home by me. As much as I hate the idea, I'd rather make the whole thing as stress free for Imogen as possible.
Anyway, we have noticed a definite improvement in Imogen herself after being on the IV. The swelling has definitely gone down, it's not completely gone, but it's so much better than it was. She is moving so much better as well. Although we are certainly getting some mood swings, she is a lot happier and we're not having so much crying and just general upset.
It's almost like I have my little girl back :)
I am so proud of the way she is just getting on with it all. She's dealing so much better than I would!!
X
Thursday 4 April 2013
Eye Test...
Well it's the dreaded eye test tomorrow. Not looking forward to it at all :(
Second day of steroids today and it's knocked Imogen for six. My poor baby girl looks so drained. Big dark circles under her eyes, pale, grumpy and just not her usual self. I hate seeing her like this, but I know it's the best thing for her. The saying "you've gotta be cruel to be kind" is keeping me sane.
We have noticed some improvement already though which makes me feel a little better. Swelling has gone down a bit and also the joints are not so hot to touch. She was moving a lot easier today too.
Last dose tomorrow after her eye test, then she has four days of oral prednisone. We see the Dr next Tuesday and if they are happy with the improvements, we should get an idea of when we start Methotrexate.
It's been an emotionally draining week for us all. We have been in one hospital or another every day this week. I can't wait to get tomorrow out of the way and then have the weekend off. We definitely need it!
Wednesday 3 April 2013
Day One
Of IV steroids. Not too bad at all really. Bit of crying when the canula was put in, then a bit more once she got hooked up to the IV, but that was more because she couldn't go anywhere. You try telling a 3 year old that they can't go far, it's impossible. However the fabulous Play Specialist was there saving the day. He bought Imogen a TV in so that she could watch Toy Story whilst having her infusion! Cue happy child sat on Daddy's knee for the whole 30+ minutes of her infusion. After infusion was given we were allowed to go home. They have kept the canula in to save having to put it in daily.
We go back at 11am tomorrow for round two!!
We go back at 11am tomorrow for round two!!
Tuesday 2 April 2013
Well We Got There...
Woke up late this morning!! Couldn't believe it! Important day, didn't want to get stuck in traffic so we were planning on leaving before 7 to make sure we were there on time. 7.45 we left the house because we had overslept!! However even with that we arrived at GOSH an hour early!
The drive up was great, no traffic until we hit London, and the way we had chosen to go, we saw all the big sights! Big Ben, London Eye, Houses of Parliment. It was great!! Imogen and Riley were not interested at all, but turns out I am a bit of a tourist at heart!!
Anyway, got to our appointment and saw the Dr. She agreed it is definitely polyarticular arthritis and that medication is the way forward. 8 of Imogen's joints are badly affected, so they have decided on a 3 day course of IV steroids (Prednisolone). However this is being done at our local hospital so that's a bonus! They are beginning it at 11am tomorrow! She goes in, sees the Dr who will put the canula in her hand then start her first "pulse". She then has her full dose which should take around 30 mins and then we can leave. We then go back up Thursday and Friday to have the other two doses. No hospital stay!!! After she has had her 3 doses, she then goes onto liquid steroids for another 4 days. If all works successfully, we will then be starting methotrexate :)
All in all a good day!!
The drive up was great, no traffic until we hit London, and the way we had chosen to go, we saw all the big sights! Big Ben, London Eye, Houses of Parliment. It was great!! Imogen and Riley were not interested at all, but turns out I am a bit of a tourist at heart!!
Anyway, got to our appointment and saw the Dr. She agreed it is definitely polyarticular arthritis and that medication is the way forward. 8 of Imogen's joints are badly affected, so they have decided on a 3 day course of IV steroids (Prednisolone). However this is being done at our local hospital so that's a bonus! They are beginning it at 11am tomorrow! She goes in, sees the Dr who will put the canula in her hand then start her first "pulse". She then has her full dose which should take around 30 mins and then we can leave. We then go back up Thursday and Friday to have the other two doses. No hospital stay!!! After she has had her 3 doses, she then goes onto liquid steroids for another 4 days. If all works successfully, we will then be starting methotrexate :)
All in all a good day!!
Monday 1 April 2013
Gosh, We're Off to GOSH!!
Yep, it's Tuesday tomorrow! Which means the dreaded trip to London and Great Ormond Street Hospital. I am terrified of going! But I know deep down that nowhere will be able to treat her any better.
It's hard to get my head around the fact that my little girl needs this sort of intervention to be able to get on with her life happily.
I know the why questions can't be answered, but as long as we can begin the journey to making Imogen more comfortable I can't really ask for anything else!
So we're leaving about 6.30am (not happy, I am not a morning person) to make sure we don't get stuck in too much traffic. Probably grab some breakfast on the way. I have already sorted out a packed lunch for the kids so they can have a munch if they get hungry.
I have already paid my congestion charge, as you can guarantee I will forget by the time we get back here and I can do without a massive fine!!
I think I have everything in order. Now it's just getting to sleep which I can see being an issue this evening. I think it might be time for a glass of wine.
X
It's hard to get my head around the fact that my little girl needs this sort of intervention to be able to get on with her life happily.
I know the why questions can't be answered, but as long as we can begin the journey to making Imogen more comfortable I can't really ask for anything else!
So we're leaving about 6.30am (not happy, I am not a morning person) to make sure we don't get stuck in too much traffic. Probably grab some breakfast on the way. I have already sorted out a packed lunch for the kids so they can have a munch if they get hungry.
I have already paid my congestion charge, as you can guarantee I will forget by the time we get back here and I can do without a massive fine!!
I think I have everything in order. Now it's just getting to sleep which I can see being an issue this evening. I think it might be time for a glass of wine.
X
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