Hello Everyone

 

I  hope you are all travelling along well - Little Big Balls, Steve and I are doing ok, have had another bit of bad news for the year, nothing unusual or suprising for us after everything that's happened!  My grandfather passed away nearly three weeks ago now (he had a pretty good innings of 96), but makes me appreciate all the relationships I have in my life and with you all as well!  Not only that, but with the amount of tears I have cried this year, I reckon I could have stopped any climate change!

 

Steve has been wanting to buy a motorbike for quite some time and two weeks ago I made him an offer.  I said that I would put some money towards his motorbike if he agreed to quit smoking (he's a pack a day smoker usually) and he is nearly up to the two week mark on Friday without smoking which is fantastic!  I'm very proud and happy for him, it's a positive move for his health and all the people that love him!

 

We have been taking small steps with Carlos - two weeks ago we were planning to have him home for the weekend, but he had a prolonged seizure and we had to call the ambulance and take him back in.  It's funny because the ambos were asking how often is Carlos having seizures and I replied all the time, but the ambo wasn't getting it!  Bit scary at the same time, given at some stage Carlos will be discharged.

 

A week ago we had him home for two nights which was a big test for us, but also exciting and went as good as we could have hoped for.  We took him down the park and played with the ducks which he loved, watched the breeze flow through his beautiful cowlick and enjoyed the sunshine!  I still continue to take Carlos out on day leave which is working out well too.

 

I had a bit of a blow last Thursday when I met with a speech pathologist - she was going to try and get Carlos started on solids and I was feelin positive because he's still feeding pretty well at the moment.  I thought that this would be a huge milestone if he could take solids, but he was seizing frequently and wasn't really recognising there was food on his lips and wasn't really interested which I was really disappointed about and very upset.  I thought I wish there was just one thing that he could manage on his own, but then it was like this big reality blow in that I just knew there would be no hope of him ever having solids.  I haven't given up totally, but in a way I know that this won't be possible.

 

 Tomorrow we are having a meeting with all the referral services to put together a family care plan.  This is a bit scary because as I've said before it will be a huge responsibility and I guess because I have so many different emotions at different times (the good, the bad and the ugly), it can be difficult to try and keep my head together and be strong for Carlos.  I guess it will work itself out eventually - I'm not putting any pressure on myself and I am going to be totally upfront with them all tomorrow about how I feel and being scared and obviously wanting what's best for the three of us.

 

I was wondering what sort of car seat you all have as Carlos is getting so big and the car seat we have is not really doing the job anymore.  Can anyone recommend something suitable?  We are also trying out Carlos in a tumbleform, but doesn't seem to like it?  Can anyone shed any light?  What sort of other equipment could you recommend that may be helpful?

 

Look forward to your thoughts,

Lots of Love Zoe, Stevo and Little Big Balls