Mia Wyn's Update
Wednesday, 13 August 2014
The last update of Mia you can read here. The past 3 months have been very stressful, and hard work. No progress at all actually. There was one week where she was good and I thought maybe just maybe she's getting better - but I was wrong, yet again. I couldn't wait until her appointment with the paediatrician again (12th august 2014). I was so ready for it, to make sure they understood everything I was saying, I even said i'd argue to my point across to! That is why I asked Iwans mam to come in with me for support and to keep an eye on Elliw too.
I got a phone call in the morning to say that Mia's paediatrician was off sick but there would be a registrar I could talk to instead. I was gutted, I felt like I wasn't going to go anywhere. Even though her paediatrician is hopeless if I'm honest!
Mia kept asking all the way there 'where are we going'. Once we reached the doors to the place she kind of had a good idea I think, especially when I told the receptionist her name for the appointment. However she did calm down and luckily we were the only ones in the waiting room so they both had all the toys to themselves!
We got called in and I was so nervous. I showed her the reward charts I had done for the past 4 weeks and showed her some notes i'd written incase I forgot anything. She asked me a lot of questions, I felt like crying because I was getting so stressed in explaining for the 100th time. However this time was different, she was actually really helpful. She explained everything and everything made sense! Finally we were getting somewhere.
Unfortunately Mia is anemic however the last blood test results were not really bad and nothing to worry about but she had to take the blood test again. It might sound nasty but I was so glad we did it on the same day, so we could get it all over and done with. We walked to the ward and Mia knew straight away where she was and why she was there. It took around 20 minutes to take one blood test. She screamed, cried, kicked and hit whilst I was holding her tight to make sure they could get the blood test from her little arm as quick as possible! I just couldn't wait for it to be over and done with! I hate blood tests myself never mind someone else sticking a needle into my little girls arm! We were both sweating like mad but then what felt like hours, the doctors were done! 2 nurses had to hold her arm still whilst the doctor tried to get the needle in! Horrible experience but it wasn't as bad as the last blood test when she had to have 3! and 4 people holding her down for it - but it was to try and find out what is wrong. Horrible but worth it. She had a sticker after it and so proud of herself after! However she is acting like she has a broken arm which Is very funny to see. In that photo is Mia showing where she had her 'pin' as she says. We're not allowed to touch it or take it off because apparently loads of blood will squirt everywhere and all over our faces! Things this little girls comes out with is hilarious.
Back to the update now! We have been given 60 sachets of Movicol to put Mia back on. This will be the 3rd time of trying this out but I have been given much better advice this time so I am confident I think that this time It will work. However she goes all the way up to 6 sachets a day, she hardly drinks. So I am going to find it quite difficult with her. Especially that Elliw tries to steal her drink all the time. She took her first one last night and I had to force her to drink her drink. I try not to put a lot of drink in there but enough so she can't taste the movicol.
One good thing that has come out of the appointment is that Mia will not need to be under paediatric care anymore! HOORAY! However she will need to go to a constipation clinic instead! Which is better I think - atleast she is under the right care now which I am so glad. If everything goes right, then she should be better by the time school starts. Not putting my hopes up high. It's going to be difficult but it will be worth it if everything goes down the right way!
She has an appointment with the constipation clinic within the next two weeks so another update will be up soon!