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
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 :)