Friday, 27 May 2016

A BIG thank you!

It's official. We have the worlds kindest and most generous set of friends! 

It was fast becoming clear that the boys needed a little more help than we could offer here and we were tearing our hair out that despite spending thousands of pounds on tests and supplements, diet changes and toxin removals we weren't seeing the changes that we should have. 

We had heard of Dr Rossignol a long time ago and we were desperate to see him. He is one of the top ASD doctors in the US/world and has been highly recommended by the mums i'm in contact with. One of them tells me that he helps her son in to managed recovery after just 4 months. i'm not seeking for recovery (although OK let's be honest, I would give him every penny, my life and soul if he could heal my boys), but I would love for him to take proper conclusive tests on them and to be able to analyse them for us. We know the boys have huge gut issues, mito dysfunction, copper elevation, suspected pyruluria, possible lyme disease, severe speech delay, heavy metals in their blood stream, sensory issues and many other issues but to have someone to test properly and help us treat their issues would be life changing for us. 

We have remortgaged our house to the stilts and we spend every penny on our gorgeous boys - so we should. But, the trip to USA to see Dr R is costing thousands and after several very teary nights I set up a Go Fund Me to see if our friends would be able to help us in raising money for the trip which we so desperately needed.  We set the target at £7k. It was reached within a couple of days. Absolutely mind blowing! Matthew would call me telling me that yet another friend had donated and another and another - I was pushing the boys in the buggy whilst he was telling me and I remember having tears rolling down my face falling on to them! "Mummy, I'm all wet!".

With every donation that came in, we were one step closer to our once in a lifetime opportunity to visit Dr R and to getting some answers. We now have our target and more meaning we can get the boys some of the better supplements that they need to thrive. We are absolutely over the moon and of course so thrilled to be going! Our friends have shown such generosity and kindness and I will be forever grateful to each and every one. THANK YOU to you all xxx

We are however absolutely terrified of the 10 hr day flight and of how the boys will cope on such a long flight so I have prepped a bag full of hourly presents to keep them going. Once we land and get to our house that'll be mission 1 accomplished. The blood tests will be awful as per the norm but at least they will be short lived. I have promised Matthew that I won't burst in to the room telling them to "get off my child" this time nor will I give the nurses dagger looks. 

The real challenge will be their 24hr EEG that they need. Epilepsy needs to be ruled out as it's so prevalent in children with ASD. Although the boys don't display seizures, it is possible that they could be having absent seizures meaning we can't see them - it can look like they're zoning out but if it turns out to be seizures then they need treatment. 

For this test, they will have nodes glued on to their heads and their heads will be wrapped in bandages for 24hrs. No big deal for me or for a lot of kids but for little one's with ASD the sensory issues come in to play and having bandages/anything on their heads can be excruciating. 

We have been practicing a lot with the boys so they get used to the sensations and so far we have reached 3 hours! We'll keep doing it every day until our appointment and hope that all our practice helps them to stay calm throughout. We are so nervous about the tests and the havoc that it could cause but so grateful that we get to have it done in the first place.

Once all the tests and appointments are done, we will finally be able to untie the knots in our stomachs! We will both be cracking open a bottle once that test is done that is for sure! We are so excited/terrified to be going on this journey and so grateful to all our incredible friends who made it happen.

We owe you everything - thank you xxxxxxx

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