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Showing posts from April, 2017

The Never-ending story...

When a big brown envelope was delivered just before Christmas , I assumed that I had bought a present that I had forgotten about so I quickly opened the envelope only to find that it was from the genetic team - a letter with instructions alongside a DVD, 3 plastic boxes with specimen samples inside, each box labelled with my name, my husband's and Roo's. Feeling all positive and excited at the possibilities of finally getting answers we each put our saliva into the tubes (it was much harder than you think as mouth suddenly dried up and Roo wouldnt co operate so it was hard work) bundled it all into the envelope ready to be posted to Sanger institute where the DDD study was being held. Our genetic consultant was really positive about it all and said we wouldn't be waiting long for answers.How wrong was he...here we are 4 yrs and 5mths later and still waiting...still undiagnosed. When we met with the genetic consultant last year while I was pregnant with Faith he admitTed th…

Medicine is a must in our lives

Medicine is a big part of our lives and the lives of many others. Without it many would be lost or struggling to deal with life. 
As a baby Roo was on antibiotics nearly every month almost for the first 2 yrs of his life due to recurring infections but thankfully his immune system started to get stronger and the infections reduced dramatically. He has also been on various of other medication to treat some of his symptoms that no matter how many tests he undergoes we cannot get an answer, an overall diagnosis. Instead he has a collection of various symptoms/diagnoses that leave doctors unable to tell us what it means, what the future holds.
But while we wait (& hope) for a overall diagnosis we carry on with our lives, fighting to ensure children like Roo get the support they need. At the moment Roo doesn't need any meds except for sleep related ones.
Those of you who have read my earlier posts when Roo was younger will know that he has sleep issues. He now is classed as having a s…

Siblings

Roo & Faith are the youngest of 4 children. They also have 2 older brothers who are currently 12yrs and 9yrs old. They have had a lot to deal with since learning their younger siblings have additional needs. I have written earlier about my eldest son struggles as he was bullied for having a disabled brother, how it had an impact on him. They both tend to struggle with their emotions, they adore their younger siblings but at the same time they resent how much our lives often revolve around the many appointments, being dragged out and made to wait in waiting rooms esp more so as they get older as its "boring" but sometimes they enjoy helping to look after the younger two so it all really depends on their mood on that particular day. I try to encourage them to talk about their feelings more but they worry that I will think they are mean if they complain about something or I will get sad. They do sometimes feel embarrassed with some aspects of Roo behaviour or the way he is …

My Diary

My diary is a part of me now, without it my brain would just get all confused trying to keep a record of every single meeting, every single appointment.
Before I had children I never bothered about having a diary as I was pretty proud of my amazing memory as I found it easy to remember the occasional appointment...then I had my older two children so one year I was given a diary and thought that it would be great for keeping a note of all school related stuff. The year started off great but by March it was getting forgotten  about as all letters from school was pinned onto a noticeboard so it was easier to just glimpse at that each week.
Then Roo came along and we were all of a sudden thrown into a different world where we seemed to have appointments on a regular basis but still I thought my memory was good enough until one day after planning to go out the doorbell goes and I open to find the Nurse who said her usual hellos and came in the house...we held our meeting , going over certain…