5 nights and counting!

Well, we have now had 5 nights without sleep and I am becoming more and more incoherent!!!!

Jonah has brightened this evening and so we are hopeful that he will have a good nights sleep tonight!

We have also had a physio session today which Jonah was none to pleased about and made it perfectly clear that he wasn't happy! It was quite sad in  a way because our physio was talking about Jonah walking! Although she does think he will eventually get there, she also said that it is going to take a very long time! I know this really but to hear it from a professional is hard to swallow and just brings home to me how far behind Jonah really is!

But, hey ho, we keep going and pressing forward and hope to see him sitting unsupported in the not too distant future!!

Getting Better!

Jonah seems to be much happy this evening which is good! It's lovely to see my happy cheerful little fella wriggling and giggling again!

3 nights without sleep!!!!

Well Jonah has been really unwell again this weekend, having only just recently recovered from a severe sore throat, and has kept us up the last 3 nights! 

I now have the utmost respect for some of my friends on the special kids forum who are up most nights! Ben and I are absolutely exhausted! 

Jonah does seem marginally better this afternoon so we are hoping that the antibiotics will start to kick in soon! We have had sickness and the runs which really isn't pleasant at 4.00am!!!

Aaaaaaarrrggggggghhhhhhh!!

I just despise the genetics department and their lack of support and understanding of the very stressful situation we find ourselves in as a family!

Jonah's special health visitor has had an email today from the genetic counsellor! It has only taken about 3 weeks for her to get back to our special health visitor. They are doing the SLC9A6 test (angelman-like syndrome) but it isn't yet in place in Cardiff and they can't tell us how long it will take!  They are not willing to do the test for Mowat Wilson Syndrome until the results are back from the SLC9A6 test. They first mentioned doing the Mowat test back in January 08 and we are left waiting still on this!

I have really just had enough of the waiting around and having to abide by the genetics agenda! They have no understanding of the situation they have put us in, all the waiting and building up of hopes that the next test could be the answer to Jonah's many problems!

I feel a change of geneticist and a strong letter and phonecall to the big boss in the genetics department is in the pipeline! 

We want to try for another child but how can we when we have these last 2 remaining tests hanging over us! And being dragged out longer than necessary!

Jonah's glasses!!

Jonah is now the proud owner of glasses! He had an eye appointment last week and they discovered that he is long sighted and has astigmatism! He has been incredibly co-operative in wearing the glasses and his new name is Jonah 'Potter'!!

Jonah's journey so far

Jonah was born on 31 August 2006 with bilateral talipes. We just assumed that Jonah was the one in every thousand baby to be born with this condition. What did we know? Jonah sent us down a very different journey to his older brother, Reuben. We started noticing he was different at about 9 months when he still wasn't trying to sit and this is where our journey began. 

He was seen by lots of people with a 10 day stay in hospital, performing many tests, all of which showed nothing. This is a path we have been on since then, lots of genetic testing all of which have come back negative Jonah, at present, is very hypotonic, particularly in his trunk, globally delayed, still has ongoing problems with his feet, is now a proud owner of glasses. Still has no speech, unable to sit unsupported although is making good progress in reaching this milestone. He is a very happy little boy and brings many smiles to our faces.

Jonah on his second birthday

Bear with me

This is my first attempt at writing a blog so bear with me!

I wanted to put into my own words, the journey that we as a family, are coping with in having a child with profound disabilities. I hope that it may help and encourage lots of other families just starting out on this journey, which is full of highs and extreme lows.