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Showing posts from 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…

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…

Is he in pain or isn't he?

One of the things I struggle with the most with Roo disability is his inability to tell me if he is in pain or not. I have to rely on my intuition, my gut feelings,  to learn to read his body language but its not always easy. Now I am more confident in knowing if there is something bothering Roo but there are still a few times where I've doubted myself. There are many times when I've felt so frustrated in playing the guessing game, going through all the motions, eliminating them one by one to try to get to the bottom of the issue. I've had one too many disagreements with GPs who think I'm overreacting but when they check his chest or ears or whatever I ask them to check they are surprised to find I am right that he has yet another ear infection, or throat infection or something else. Shortly after Roo turned 2 he started to cry esp at night..we got told it was reflux and he was put on meds for it...after a year I said it wasnt reflux and stopped all meds as nothing was…

A possible different route...

One of the hardest part of being a parent is making decisions for your children and not knowing if it's the right one or not.According to hearing tests Faith is at the very end of the severe range, borderline profoundly range for her levels of hearing loss and the hearing aids she has are programmed to her level of hearing loss yet we are not seeing any clear responses to them. I always though that once we got the hearing aids we would see the expressions on her face but we have never seen that, when she first got them she slept through the switch on which was disappointing but they said it was early days... it's now been almost 6 mths since she first got them and despite them being turned up we don't see any of the typical responses, she doesn't turn her head at sounds, she doesn't jump at loud sounds, no sounds wake her from her sleep, she doesn't respond to her name and so on...but she is hearing something as sometimes she pauses and looks confused but it…

The Good side of Technology

We always tend to hear/read in the news about how bad technology can be for our children, how it affects their behaviour in a negative way, makes them more lazy etc. I can see this point as my older boys would prefer to play Xbox than to go out on their bikes , they would play all day if they were allowed but I have set rules about it, they are only allowed it for a set amount of hours in a day , I make them have rests in between, some days I don't allow them time on their technology as I insist on family time like going for country walks, playing a board game or something . I think as long as its in moderation , technology isn't that bad for our children. But for some children esp Sen children its a vital part of their lives, it may be their only link to the outside world, it may be the only thing that helps to calm them down, to help them cope with what's going on around them, even helps them to communicate as there are certain apps you can get that enables non verbal ch…