Well it’s Monday again and there are so many things I have been wanting to post over the past week, but unfortunately I just haven’t had time to…….. never mind what’s the saying “so much to do, so little time”.
So what do Mondays mean for us, well before the day even begins I am up and prepping the syringes of medication for our Imogen.
She is only 3 so doesn’t yet register the day of the week, but more what our routine is so she knows;
Music with Mattie & Mimi means HORRIBLE medicine plus all of the medication she usually has (Mondays)
Play school days and weekends are the best days as it’s only one type of medicine twice a day and one lot of eye drops in the morning then two different eye drops at night (Tuesdays, Wednesdays, Thursdays and Weekends) I know what your thinking that sounds bad enough in itself…… and I agree!!
Free day Friday, we don’t do any groups or have any play school but we still have to administer all of the usual medications and also it’s methotrexate day, so straight after breakfast she has to also have an injection in the thigh. Thankfully this is our free day as it’s usually a tough day. The drug she has injected not only makes her tired and can make her feel a bit off colour, but it also causes her to be very irritable and angry. However after weeks of watching her and monitoring her behaviour on these days we have realised this is more a reaction to what we are having to put her through all week, rather than any form of side effect that the medication brings. It’s like her little way of getting her own back and do you know what….. although it’s hard being Mummy and Daddy and dealing with this, I can’t blame the poor little devil one little bit!!!!
So that’s our week in a nutshell.
So anyway it’s Monday, we have done the HATE part of forcing the horrible 10ml of Folic Acid into her (the Folic Acid is to help with the side effects that the injections can have) she hates it and comes up with every excuse and delaying tactic she can. Sometimes it’s easier than others and she will take it whilst gagging, because we have bribed her with a fruit shoot and little box of smarties. But other times it is a fight and either daddy has to pin her in his arms or Mummy has to practically sit on her and force it into her mouth, it’s hideous. All you can hope is that the more she has it and the older she gets the more she will understand and tolerate it.
Usually we then have the LOVE part of our Monday which is Mattie & Mimis music group, which has been a lifeline to me and my girls since long before Imogen had JIA. However today we had to miss group to head off to the hospital for her eye clinic review.
A few hours later…..
So the eye appointment went well and things are looking better than a month ago. Imogen was as brave and cooperative as she always is with her eye doctor and it is great news to hear that the inflammation in both eyes is under control at the moment, so the steroid eye drops are working, also the eye pressure is now within ‘normal’ range. This is all so reassuring that even when things feel really tough, what we are doing really is for the greater good.
So now the plan is to continue with the eye drops until we go for Imogen’s next review, in 4 weeks time. We will slowly start reducing the steroid eye drops as directed and depending on how she is doing, they may even try taking her off these all together and fingers crossed her eyes will then remain in a controlled state. I guess it’s like anything, it’s all trial and error until you find what works for you.
So as always well done to our little Imogen for being strong, tolerating all of the pulling about and medications, and I promise you my darling it will all be worth it.