Skip to main content

Posts

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…
Recent posts

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…

Motherhood

For as long as I can remember I have always dreamed of becoming a Mum, and having a large family... I loved watching The Waltons as a child and loved the idea of having a busy household with kids running around.I soon learned nothing is that simple as they often make it out to be..at 20 yrs old I was devastated to be told I had severe PCOS & would never have a family unless I had fertility treatment. I held it together in the appointment and once I got home and had to break the news to my Fiance (who is now my husband!)  I completely broke down...my dreams shattered. It was a very dark time but my other half stuck by me and we eventually got married a few years later. After a magical honeymoon we came home mentally prepared to start fertility treatment to see if we could ever get our dream of becoming parents. After 4 cycles we were over the moon to discover we were pregnant with our longed for baby.The moment I held my son I finally understood a " mothers love" it was t…

In & out all day long...

As many of you already know Faith has been wearing her hearing aids since she was 10wks old. It became a part of her routine everyday that they were put on in the morning when dressed and removed at night before bedtime or occasionally during the day for certain reasons like feeding or swimming. Every appointment we went to we were asked if she was tolerating them and we always said that she wasn't fazed by them. The only issue we had was stopping them falling off so we were recommended the headbands which are fantastic in keeping them in the right position. 
Now Faith is 9 mths and she has gone from being a constant wearer to one who hardly wears them much to my dismay. I have tried everything but nothing is working...she constantly pulls at her ears, rips them out within minutes of me putting them back in! We have had some scary moments were she has managed to get the ear mould into her mouth and choked. I have to watch her like a hawk and if we are in the car she can no longer…

Becoming a big kid...

Losing your first tooth is a huge milestone as its a sign you are becoming a big kid! Well that day came on Saturday for Roo! 
We were told at a dentist appointment back in Nov/ Dec that he had a wobbly tooth so we waited with bated breath to see how it would all unfold as we were unsure how he would react...fast forward 3 mths, he started to wince when eating & wouldn't let us check in his mouth to see if there was anything to be seen..it wasn't until when I noticed he would only bite his food with the side of his mouth instead of the front and I realised it was the wobbly tooth!! 
But it proved to be quite stubborn and would not budge. On Saturday Roo woke up in one of his moods, very emotional, crying at the slightest thing, unable to tolerate much so the guessing game was on to try and work out what was wrong as he was unable to tell us. Gave him some crusty bread for dinner as he hasn't been eating very well recently and I knew he would eat that and at the end hi…

My verbal child still can't communicate...

Following on from my previous post I wanted to explain that even though my son is now verbal I've come to realise its not what I expected as I thought it would make things easier but it hasn't.... The day I heard my son say "Daddy" his first proper word after his 5th birthday made me cry...I never thought I would ever see the day when he could speak words. He had babbled/ vocalised for years before hand but never uttered a word till that day. As the months went by we found he would learn a word then forget it for a while then needed to relearn it but soon he built up a list of words he could say. Everyone was excited that he had found his voice and we were told that our lives would become so much easier now that he was learning to communicate. Now almost 2yrs have passed and his speech has come on amazingly but we discovered that it's all copied, he repeats what he hears others say around him, ask him a question and he repeats the last word or two back to you ra…