Monthly Archives: August 2015

My big sisters birthday!

Reedy has been helping us all celebrate his big sisters birthday! 

Hope she likes her new bike…    

Do you think Annabelle can find me in here!!  Princess Annabelle was a bit busy being a “big girl!”  

We have been having a great few weeks of seizure freedom. Reed started Keppra about 5 weeks ago and for the last 3 weeks (we think) he has been seizure free. Emerging has been this most amazing, engaging, happy, explorative little super hero. 

Long may it last. We are off to sing and eat cake!

Don’t fancy surgery tomorrow mummy!¬†

As some of you might be aware, we were scheduled to head to Bristol today in preparation for surgery tomorrow, this includes getting a good night sleep (to save the bed) and having bloods taken to confirm the blood type should Reed require a blood transfusion… (WTF). 

Anyway, last week I went to the GP on Tuesday, Wednesday, Thursday, Friday and Saturday at 04:30 (that was fun!) as I was unhappy with the initial diagnosis as “don’t worry Mrs Berryman! Just a virus” I saw 4 different Drs as I was both panicked about Reed being poorly and highly anxious because surgery just round the corner. Soooooooo on Wednesday a Dr reluctantly took a swab from my throat  (‘the children probably won’t stay still’). I felt like crap too and understood why my children were so moody! Will be back in a few days, but in the words of the Dr probably be nothing but a virus and have no implication on the radical surgery that Reed is about to have. 

Like I said unhappy with this diagnosis and knowing how rubbish I felt compounded by restless nights and Annabelle spiking a high temperature I went back day after day….. Bet they thought “bloody woman!” I started thinking that and my besties prob think that too, generally and most of the time!?!

Finally accepting that I am some kind of crazy, I resist taking temperatures and having ran out of cal pol I stop lining up the family for medicine time and carry on preparing mentally and physically for our life altering trip; shopping and crying my way round the supermarkets, writing the schedule for every family member and rehearsing/reciting my “we are okay, he is in great hands, we know it’s the best thing we can do for him” speech and vaguely believe it just about get through it without a breakdown. This washed down by copious amounts of wine then suddenly Monday arrives… The day we had been waiting for. 

Epilepsy team call and “look forward to seeing us” (kind but wtf!) and the I get a call from my GP… strep a found on my swab, call Bristol: POSTPHONED!!!!!!! 

I was so calm but I did hear a number of very loud explesives coming from the front room. You see we weren’t cross it was cancelled we were angry cause there could have been steps to avoid cancellation. But, to allow reason to be heard the anger and frustration needs to come out. We felt such an injustice, but it was just a miscommunication and the problems that you can encounter when not seeing GPs that know your story. No one to blame really, silly strep a. 

Soon after we marched to the surgery and had a little chat with the practice manager and things were dealt with fairly quickly from then, you see, this time last year a duty Dr diagnosed reflux to explain Reedys Epilepsy, so on the eve of brain surgery you can imagine my frustration. Luckily and from lots of experience I know how to win arguments (well I think I do!) Stay cool, know your facts and never swear…. Accomplished! (Ryan hates it!) 

As much as this is a crapity situation, I really think that it is the best decision, at the moment Reedy is well and his seizures, as far as we can see, are the most under control than have been in 12 months, so we get to spend a bit more of the summer with our gorgeous children. We are going camping this weekend and will go swimming… All the things we all love. Surgery likely to be September time now so potentially less able to do the things we love. 

Reed agrees that this is the right decision judging by the smile on his face at the park this afternoon…. Didn’t fancy surgery tomorrow mummy! 

  
Keep you updated with the next date. 

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