Wednesday 29 June 2016

Foxes in Orlando!

Well we made it to the US and back - we did it!!

I'm writing this in detail for all those other families considering a trip to the US to see a doctor. I know I would have loved a break down of the little things like fights and appointments etc so I hope this helps :) and I won't be offended in anyone else stops reading! Here we go...

Despite my worries about the flight and settling in to a new time zone, we actually adapted really well! We played an episode of Peppa Pig going on holiday just before leaving for the airport and talked the boys through each part - Peppa is at the airport, oh look Peppa is on a plane, George is putting his seatbelt on etc...thank you Peppa Pig for this one!



We talked a lot about the plane on the way to the airport and the boys were so excited to be going on a plane just like Peppa Pig!



I had emailed and called Virgin to confirm that we would be needing special assistance at the airport but they didn't seem to have any record of our details which was a bit disappointing but not the end of the world as they quickly allocated staff to help us through queues and avoid any waiting around. We were given a Lanyard for the boys to wear so that staff could easily identify children/adults with needs to help.



 

Of course the boys wouldn't wear it so I wore it on their behalf. As we went through Gatwick airport (which by the way is a huge sensory explosion for anyone!)  I did notice staff looking over at the lanyard so it's a good way of indicating needs without making it too obvious. The lanyard is a great idea but just an FYI - it sets the alarms off as you walk through the sensors!! The last thing people with needs want is to be stopped and searched so I suggest you take them off before walking through! I actually forgot I was wearing it and staff kept asking me if they could help in any way - at first I thought that staff had become a lot more polite and thoughtful but then I realised they thought I was the one with needs! Awkward.

Joey started getting nervous as we walked through

the airport - he knew something was coming and he became more anxious the closer we got to the flight.We got on the plane and Joeys wobbles started - he didn't want to put his belt on nor sit down - we were delayed for an hour on the plane before take off which wasn't too bad but a real shame as every minute on that delay was quite painful trying to assure Joey that we were all fine and that seat belts were fun and not scary.

As soon as we were in the sky they both had a great time - all the presents I had packed were a bit wasted as the best fun was watching new films on their headphones and playing with the fans on the ceiling. They played pretending to dry their hair and hands for a loooong time! Hours of fun! We did play with some of the toys and they were all a hit! Best present - the calculator which glowed and had a lid. This lasted them throughout our time in the US as well as flights there and back! Now that is £2 well spent!.





We arrived at Orlando and we were greeted by another rep who took us through passport control without any queues at all. By now it was about 10pm for the boys but they didn't show any signs of being tired at all! Orlando airport is a sensory delight - you get a tram to take you to the airport centre which has ceiling fans and fountains in it - YES!



When we arrived at our house the boys went crazy for their rooms which were Frozen and Mickey Mouse decorated! Its now midnight their time but still no signs of being tired - we pushed through to night time and all flopped.

Practicing for the 24hr EEG

We had a couple of days to adjust before seeing Dr Rossignol and boy did we need that rest. When the day arrived, I went in to the office first to talk to him in peace and quiet before the boys joined us so Matthew entertained them in the waiting area (which has lots of toys in to keep them going).










When I first saw Dr R I was so overwhelmed and excited that I gushed like a silly school girl! "I'm so honoured to meet you, I am a huge fan of your work, i've read all your research papers..." etc etc. Dr R is known to be quite dry and not have the best bedside manner and he shot me down before I could continue to embarrass myself for which I'm quite thankful for "Tell me about your kids" were his first words. Right. Onwards. He hates me already.

We talked about the boys prematurity and what medications vaccinations, transfusions, antibiotics and meds they have received when they were in minus months. His face blackened and he said if that hospital were in the US it would have been shut down already. He took a full history of the boys and asked me a lot of questions about how they present. I could hear them outside singing and playing (they are LOUD) and he asked if they were my kids. I cautiously said yes and he smiled and said he likes kids who are a bit naughty. Result!! He will LOVE my kids!

 (always causing trouble!!)

He asked if anyone in the family had gut issues and I mentioned Matthews issues - he looked at me and said "It's all his fault then". I laughed nervously not sure if he was serious or messing about - awkward silence as i tried to figure out the right type of laugh/look of concern to offer - he cracked and laughed. Massive relief! I tried to join in with the gag and asked him to tell that to Matthew when he joined us but I was met with "It could be your fault too" ..more awkward silence as I figure out if we are joking or serious..i laugh nervously and pretend to itch my leg to avoid eye contact...he cracks and laughed. Oh God I'm an emotional wreck trying to figure this guy out!

When we were done taking both boys histories and symptoms the boys joined us - in they walked but  Joey not being one to conform did a sharp 180 and walked straight back in to the reception area. Bribing him back in with snacks,  Dr R watched the boys interact and play. Xander decided that the Bristol Stool Test was a reading test and started reading off the letters to him. I beam with pride!!! Dr R said they're pretty high functioning which we both felt a huge sigh of relief at but asked him again just to double check he meant that. He said they are clearly delayed in speech but not by any means severe.

He did a physical examination of them and said they have low muscle tone (in line with Mito dysfunction) and he did a double take when listening to Joeys heart - he found a heart murmur. He said it's not particularly small so to have it checked regularly in the UK. Incredible that no one has spotted it before with the amount of tests that they go through.

As he went through their test results he said that he would like to focus on their Mito issues as their ONE test came back with such negative results. He listed out the bloods that he would like to take and with each one I was conscious of price so we whittled it down to what we thought was most important.

I asked him about Lyme and his response was one I had't heard before - he said we can test but that if we find a positive in their bloods it doesn't necessarily mean that they have it - it could be resting dormant in their systems. You have to look at symptoms and do much more thorough tests instead of a simple blood test.

With regards to the 24hr EEG - he said that as they present as pretty high functioning, he said that if they are having seizures then they are most likely to be mild. He would like to treat their folate and Mito issues first and then see if they improve before he offers meds for seizures. He said he would still recommend having it done but it was our choice as he's not going to treat them now anyway. We said we would have a think and get back to him.

Next came the blood tests - Matthew took Joey whilst I played with Xander outside in Dr R's office. I could hear Joey scream and I wanted to make some noise so Xander didn't get upset hearing his bro so upset so I started singing loudly ...in Dr R's office...with Dr R staring at me. (By now he's probably thinking its definitely all my fault).

In came Joey upset but distracted by the new toys we pulled out. Next Xander went in and Joey and I said our goodbye to Dr R and waited in Reception. The next 20 minutes were nothing short of horrible. The boys veins are so weak and thin from their prematurity that taking bloods are always tricky - they struggled to get a good vein and Xander was screaming with all his might. It took every part of me to hold back from going in to the room but i knew that would just make things worse. After about 10 minutes of Xander now screaming "make it stop daddy, hurts daddy" a nurse came out and called for assistance. I asked the receptionist to please tell me what the hell was happening and she ran in to the testing room. (probably ran away from me more than running to the emergency!). After another 10 minutes a nurse came out shaking and sweating "ok Mam, your son is very distressed (no shit!!) and dad is getting very frustrated (Oh God, Matthew must have sworn at her), your son is wriggling so much that i'm breaking his veins..." I cut her off "Right, stop then, Just stop, it's finished". I walked in to the room as Matthew had come to the same conclusion and was walking out with Xander with 4 lots of plasters all over him where they had tried to take his blood. I held him and kissed him all over a million times telling him how brave and how proud i was of him.

He calmed down but for the next day or two kept bursting in to tears remembering the little trauma. He now weeks on, walks up to us with a stick and pokes it in out arms and tells us he's doing pinching (taking bloods). Apparently this is a healthy way of dealing with what a child perceives as traumatic so we are going along with it and playing lots of doctors and nurses.

I don't want to worry others unnecessarily - my boys being so extremely premature have very very weak veins - it's not normally that difficult!

We waited in reception area feeling totally deflated as they couldn't get enough blood for Xander and that we would have to go through it all again in London. We waited another hour for the bill. When it finally came for the second time that afternoon we nearly passed out - $4000. This is way over what we had envisaged but as Matthew picked himself up off the floor we paid and left knowing that even though this was $2.5k over budget we had done everything we could and had met with the God of ASD. We were now officially a client and he is going to do his utmost to help us.

 Just about managed a smile on the way home!

We had spent 5 hours in his office and we drove home barely saying a word as we were so exhausted emotionally. We talked a lot about the EEG when we got home and decided to treat the boys with the supps he recommended initially and then do the EEG in a years time. We couldn't afford it now anyway and we couldn't put the boys through more trauma after the blood tests fiasco. We then received an email saying they had got just about enough bloods from Xander to run enough tests - huge huge sigh of relief!

We spent the next few days doing what normal families do...



Ok not that normal...but we enjoyed our boys for everything they are and everything they're not.  We didn't put any expectations on them - we just let them be who they wanted to be. It was so liberating! They loved running around the house playing sleepy time in every room, playing with each other and us and just being little boys. No pressure to learn new words nor behave in a certain way. They had such a great time!





































We did however feel like we had come all this way for something so important and life changing (thanks to our friends and family) and we wanted to get home and crack on with helping the boys as much as possible. We did have some amazing times with the boys - one we will cherish forever is taking them to Coco beach. We were worried their sensory issues would effect their enjoyment of the beach (i mean, sand is annoying after all!) but they were in absolute heaven! We kept being told by locals that we were out at the hottest time of day but we didn't care. We covered them in oodles of cream (Badgers - toxic free for anyone who cares!) and let them go for it. They screamed with delight running in and out of the water! We sat and watched them with tears rolling down our faces - we tried to bottle that moment forever.








We also took the boys to the Rodeo! They have never been to the cinema/theatre so walking in to the huge stadium Joey tried to do his normal and walk out but Xander embraced it and sat on my lap taking in what on earth was going on. Joey calmed down with Matthew and sat on his lap - I turned to him and he kept pulling a sad face I know well, crying and walking off. I sat him down and told him that he didn't have to go on the horses himself and that we were there just to watch the horses. From that moment on he perked up and absolutely love love loved it! He wanted to go to the front and see as much as he could! Bless him for thinking we had taken him there to ride a bareback wild horse!!




Hopie our incredible old aupair drove 12 hrs to see us for a few days - the boys soaked up every minute with her as did we! As she set off it was tears all over again at home - we love you so much Hopie - so proud of you and everything you have achieved.



We were in Orlando at a funny time - Hurricane Colin, the shootings, the alligator attack that killed a 2yr old...it puts our little lives in to perspectives. We think we go through so much but nothing compares to losing loved ones. We cherished our boys even more every day we were there and thought of all the families suffering as we flew home with our boys.

Now that we are home we have more battles to fight - we are straight back in to fighting for what the boys deserve. After US I feel depleted of emotional energy but as always - we just keep swimming :)










































































Monday 30 May 2016

How to get through a 10hr day flight with ASDouble Trouble!

We are about to set off on a 10hr day flight to Florida to see one of the top doctors for ASD. With our twins. Who have ASD. 10 HOURS PEOPLE!!!

We have the ipad ready to go with as many apps as we can find, iphones at the ready and snacks galore but I've
created the mother of all toys to entertain children on a plane but my list is geared towards little one's with needs. There's no chance colouring or play dough will keep them going - we need sensory and highly engaging toys...and of course minions. 

Here we go:



Giant Minion Sticker books -we are going to stick stickers all over the plane. Sorry Virgin.
£3 Amazon


Minion Hats - thank you Primark £3 each


Tattoos!! We are going to decorate daddy's face. I especially like this one. 
Primark £2



Light up fingers £2 Tiger


Moustaches - who doesn't love a moustache! Tiger £2


Tiger - this one may not be a hit but worth a try - they'll love the noise even if they can't work it £3


Masks! Tiger £3 - I'll do the colouring and they'll do the wearing. 


One of mine loves numbers so a calculator is very exciting. And it's flourescent purple which glows -oh yes a clear winner. Also, numbered erasers shaped like animals...another few minutes gone £2 each.


Second hand V Tech camera - they can take their own pics of each other and drop it as many times as they like. £8

Yum boxes for their food ( in line with the Reid diet) £24.99 Amazon


Gel glow in the dark skeletons £3 amazon - we plan to stick these on the windows. Again - sorry Virgin!


 Melissa and Doug Scratch art £2.99 Amazon 


They love playing around in daddys flip flops so hopefully they'll be excited to have their own.
 £1 primark


All wrapped up in Minion wrapping paper - yes we'll have a whole bag of toys to carry onboard but we will have busy and excitable twins rather than bored and grizzly twins...she says. 

Fingers crossed it's enough to see them through!!!

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













Wednesday 25 May 2016

Yep I swore...again.

This week we heard that after a long battle, the boys will be allowed to repeat a year at nursery before starting school! 


HAPPY BOYS!!!


I have been passionate about this as we see the boys change completely when they are with children their own age - they can't keep up and either walk away and cry or resort to romping with each other. Children their own age talk a lot and they talk quickly - the boys can't process the information and it's starting to effect their confidence. It's been a fight from the start but as with every battle we face we embraced it...(and in reality we didn't sleep until it was resolved and then collapsed in a heap after we got the news!).  We got letters of support from the boys amazing team of therapists as well as video evidence of them playing with a child a year younger and then with a child the same age. 

Apparently I was the first mum to ask for this video to be shown in the SEN panel. I was definitely the first mum to swear in our meeting with the Ed Psych too but i'm getting used to firsts!! Even though I asked for the video to be played in the panel it was another 3 phone calls, multiple emails and yes more swearing before it was confirmed thanks to the head of the case managers who agreed that we live in a world of multi media and yes of course they can play the video. Such a breath of fresh air to hear these words! Thank you Wendy Bollsover! 

                     Can't stop them from smiling right now!!
Turn around in the car to see these two holding hands! Best buddies xx

When I received the Ed Psychs report the day before the before the SEN panel, I stayed up until midnight tearing it apart point by point. It wasn't the Ed Psych's fault - she was following her testing criteria but the system itself is just absurd. No consultations with the boys 1:1 workers and any remark about their emotional wellbeing was complete speculation. Why aren't the parents points of view taken in to account? We know our children the best . Three visits to nursery are meant to determine the rest of their lives with no regard for the people who know them best. Inappropriate comments were included in the report as well as inaccurate research papers. 


The  boys with their best friend and cousin  - Luca. Love him for being so patient with them and for always being so tolerant when they rugby tackle him instead of talk to him! 


One comment that stays with me in our meeting with the Ed Psych (post my tears) is her comment of "Don't worry, if your boys go to school, there will be others with higher needs than them". Brilliant. That makes me feel just great. I'm not really in to comparing my kids needs with the needs of another but if we're playing that game then no it doesn't make me feel better!! Frankly I don't care one bit about their grades, I care about their emotional happiness and wellbeing. Whether there are kids with more needs than them at school is irrelevant and not a competition and frankly makes me want to help those other families! 'Cue more tears'. 

I definitely wasn't the first mum to fight for their child to repeat a year at nursery but there must be an easier way to come to a decision here. Even with my extreme preemie twin boys with ASD: (twins are known to develop much more slowly as they have shared attention and boys are known to develop much more slowly girls), born at 26 weeks (extremely premature, not just premature), with ASD (developmental disorder) we had a battle on our hands so I hate to think of how much other parents will have to fight. 

Visit from Godfather Chris who gave up a whole afternoon and brought them a gluten free organic whole foods bag of treats! 


There's a lot in the press at the moment about the pressures children face at school and how we are crushing them we are academic testing. Surely we can ease off children like mine who are already at a disadvantage? Why put them through the emotional turmoil of starting school when they are already struggling with their current setting? We don't have an age restriction for University but for some reason school is rigid and no one seems to know why...even the Ed Psych!

More Cranial from Miki

We are one of the lucky ones to be able to give them this opportunity and we are absolutely thrilled. They deserve this and I of course plan to help them as much as possible in therapy, diet, love and kisses! Love and kisses cures everything afterall xxx