Houston Texas 20011
So I have been struggling to try and put into words my thoughts and feelings about the conference…which yes…must be a first for me!!So I Have decided to break it up into three parts: “What a Drama….” “In all seriousness….” And end with “Some funnies..”
“What a Drama….”
you can read about the first drama's in a previous blog entry...but to put it short...
- our flight to Dallas was redirected to Houston as there was a storm in Dallas. Despite Houston being our final destination we were not allowed to get off the plane. We spent two and half hours on the tarmak before flying back to Dallas.
-when we stepped of the plane in Dallas we discovered our flight was cancelled, as were every other flight to Houston that day.-We had to stay overnight, unplanned, in Dallas, with no luggage and no clothes.
-We couldn't get back to Houston until late that afternoon but where too over it and tired to bother seeing anything in Dallas.
-When we finally go to Houston our Luggage was lost.
-We didn't have our luggage for another two days. so had to go and buy underwear and clothes at the local target. Thank Joann!-it was discovered that our luggage was at the wrong airport, but we were very glad when it arrived..and i think so was the hotel staff, who by day two.. knew me well...and I only had to step out the lift turn to the lobby desk with a "did our luggage turn up?' look on my face, for them to shake their heads...so I would back up the lift again.
We decided it wasn’t good enough that our luggage ended up at the wrong airport at the start, so we thought we might get lost and go to the wrong airport at the end! And after a $40 cab ride to Hobby airport a wait in the check in cue, we found out we had gone to the wrong airport! So a $60 cab ride later, and another wait in a cue(luckily we were early in the first place!) we were checked in and ready to head home!!
On our trip home we discovered that our seats had not been booked together. Scott and I laughed and said..oh well we will put CJ in his seat up the front of the plane, and head up to our seats up the back and leave him for someone else to look after. This is only funny because we knew of the impending VERY hard trip home with a grumpy boy who just wanted to be in his own space at home!
our tickets where changed...and we ended up in the same row, just with an isle between us. but this turned out ok. so one of us could have a little time out..then the other could occupy cj.
“In all seriousness….”
As soon as we stepped into the lobby of the Holliday Inn we walked into ‘Mecp2 Duplication and Triplication World’! Every time we popped down to the lobby, got into the lift, (sorry elevator - they don’t say lift in the USA), we met another family who were there for the conference. No matter what time you went to breakfast, lunch or dinner at the hotel restaurant or to the hotel lounge there was always someone there to chat and cry and share some sweet treats with, something I have come to miss being back at home.
It wasn’t hard to tell, the families who were there for the conference. It was quickly noted by all that all our boys have so many similar facial features and mannerisms.
Throughout the week there were many a late nights in that hotel lounge area, full of tears and laughter. Friendships were made between siblings who as soon as they met were arranging pool parties and sleep over’s and ways to keep in contact together in the future. Bonds between boys(and the two MDTS girls) were made. Mothers teared up as they watched their boys play and interact with each other, with their ‘mm mm’s’ and rocking and smiling at each other, it was like our boys had known each other forever.
Dad’s bonded over beers and pizza and discussions about sport and their boys.
Mothers cried and hugged, and laughed and joked. We held each others boys in our arms and amazed at the love we felt for a child we had only just met. Smiled as we admired each mother…their strength and courage. We ‘exchanged notes’ on the things that work for us, and the things that don’t. We talked about our worries, our guilt and fears. We comforted and supported each other. We established unbreakable bonds, rejoiced that we had all been brought together…but grieved for the reason why.
On the Wednesday and Thursdays before the Conference began many of the boys and family members had blood draws to be used for ongoing research for Mecp2 and surrounding regions duplication and triplication studies, at the Bayor Collage of Medicine.
Some of the children were also involved in skills testing and an eeg test. Cameron was asked to partake in these tests.
Although for some of the tests we will not receive the results back as they are for university study purposes only, I was glad that we could partake in them.
I am very interested to receive back the results of the skills tests, which we were told we will receive.
The conference officially started with the ‘Families Meet and Greet Dinner’ in the Hotel restaurant. A fun filled evening with raffles(I won a Mecp2 duplication shirt). Tim Tam Slams(see the Funnies section), eating a very yummy dinner, and meeting the families we had not yet met.
I personally would like to thank the families who put this event together, and thank Joann Meaux and her accomplices’ for the beautiful quilts that were given to each boy who attended the conference. And everyone who contributed a little something to the goodie bag we where all given.
The conference speeches began on Thursday afternoon after a complimentary lunch and the siblings and MDTS children signed into care with local volunteers.
Thursday’s part of the conference was focused around information on the genetic side of the syndrome, demonstration on what the genetic coding looks like on a wide range of the boys, showing the major differences in size of the duplicated/triplicated areas on the X chromosome. Although there is a wide degree of different sized duplications/triplications, it is the Mecp2 gene that is the common gene in EVERY duplication or triplication, and it is this gene that the dr’s believe and are proving with research is the gene that is causing most of the problems with the boys. It has so far been noted the size of the duplication or triplication does not relate to the severity of symptoms. At this point they don’t really know what creates the large spectrum of symptoms in the boys from mild to severe in occurrence, however, unfortunately, it is very obvious that those with the triplication present with much more severe symptoms than those with the duplication.
They also discussed the similarities in symptoms and affects that the duplication has with the deletion or mutation of the mecp2 gene as seen in the RETTS girls.We were also given a presentation on a small proportion of the current research being undertaken at the research facility, and were given a tour of the building including the lab being used specifically for Mecp2 related syndromes. At this point parents are asked not share the information that was given about research. To keep the information protected until it is officially in print.
Friday’s conference information was more symptom’s based. Specialists in Epilepsy, gastrointestinal problems, immunity, sleep, pulmonary complications, neurology and general therapies lead the days speeches.
There was a lot of information to take in. And I wont write it all here, but I am happy to share it with those who are interested.
Unfortunately due to extreme jet lag and exhaustion setting in I had to head home to the hotel for a sleep and missed the afternoon speeches, however these speeches (as well as most of the rest of the conference have been videos and I will be able to receive a copy of the video.
The conference ended with a pool party for all the families, at a lovely pool and playground area.
Some families stayed a while longer at the hotel(over the weekend) and enjoyed some time in the local area, at the children’s museum (we will have to go their next time!), the aquarium and other local tourist spots. Ofcource a trip to an IHOP was in order…I was very excited about this having never been to one..and I was not disappointed!!
Then over the next two days as families left for home, and more tears flowed. It was hard to say goodbye. Knowing we are all so far apart.
Arriving home was a strange feeling. Jet lagged, but relieved to be home, I felt kind of empty. It was a feeling of being isolated all over again. I knew I couldn’t just head down to hotel lounge area to find someone to talk to. I felt a million miles away AGAIN from those who understand.
But I do know that the bonds we have made will be unbroken and through facebook, skype and email, we will all stay in touch.
“Some funnies..”
One of the very first things we saw in Houston.. a rather large road side billboard
“183 WASNT ME – defence lawyers”
Driving through Houston a bit further on *TACO BELL*…… *Diabetes clinic*…..*Burger KING* All in a row…I kid you not. But I guess that really isn’t that funny!
Those crazy American’s! They do everything back-to-front…like drive on the wrong side of the road. Twice Scott or I went to hope in the passenger side of a taxi or friends car…to realise it was the drivers seat! The driving on the wrong side of the road can be quite a scary feeling when you are suffering from jetlag and over tiredness.
Tim tam’s - we had loads of fun at the meet and greet teaching the other parents the pleasures of Tim Tam slams!
Landing in Dallas and going through customs was kind of scary, we had to have our picture taken and our finger prints where also taken on a computer pad. And it was all VERY serious. Before take off to Houston the security checks again where very serious “do you have any guns, explosives, any weapons of any kind”.
I was frisked, because I had baby food that I didn’t want opened..so they had to check I didn’t have another kind of fluid on me that I might mix with the baby food to create a bomb. Which to me makes absolutely no sense what-so-ever…seen as they didn’t frisk Scott. Who’s to say he didn’t have something on him?
Anyway….the funny part….we had to giggle, when we arrived home in Queensland Australia, and were stopped by the security dog, for a split second fear hit(I have no idea why.. we knew we weren’t carry guns or explosives)….until the dogs guard asked “You got any Banana’s in there?”
Walking over to the children's hospital i saw a Squirrel! I got very excited! Apparently its not 'cool' to get so excited about squirrels. :)
I know there were lots more funny things...I'll add them when I remember!
I want to end with a MASSIVE MASSIVE HUGE GIGANTIC..words cant describe..how thankful we are to all of those who helped us make this trip a reality.
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