Tuesday, January 31, 2017

PEG Update

I'm not really sure if I should say PEG because that's probably NOT going to continue to be the name (LOL) One of the parents I met didn't care for the name, said it reminded him of a pirate's peg leg (LOL) That started a discussion with everyone at the meeting about whether we liked the name PEG or not. During the meeting as well as dinner that night there were some great discussions about names. Some even came from family members that weren't there! It's amazing what people can come up with when working together! Maybe the next time I update I'll have a different name for it :)

What can I say about the meeting and the experience?? For me it was a fantastic experience. The ride from the airport was beautiful. The buildings in the area just amazed me. When I checked in I had a wonderful gift of local "snacks" to enjoy.  Paul Mazur, a project coordinator, thought it was be wonderful to get get some local goodies for us all to enjoy. What a wonderful way to start off this group with goodies and a sweet note welcoming me! I do have to say I ate almost all the chocolate items and brought everything else home. Issac and Brianna tried the Salty Oats Oatmeal Raising cookies from kayak cookies and Brianna is now insisting that we need to order some :) Emily Glanton was huge in making these last few days go smoothly for us as well. I'm not sure that anyone could have taken better care of us than these guys. 

The meeting had us meeting SO MANY NEW FACES! Our genetics counselor was there, a site coordinator from Vanderbilt, several doctors and many, many people that are just part of the UDN, Undiagnosed Disease Network, program.  These are a few of the people that we got to spend time with.  Isaac & Alexa

Isaac & Ingrid



Ingrid and Alexa were with us the entire meeting and they were so truly excited to hear our thoughts and find out how to reach out to new families.   I've never participated in anything like this before, so I wasn't sure what I could do.  Ingrid asked us what could we each contribute to the group. In my  head I was thinking I don't know! What can I contribute?? There were so many things that people had in common and yet such wide spread differences as well. One of the dads has created a wonderful resource to help other parents in dealing with insurance companies, fire, police, etc.  I think what he has created can and will help SO many other parents in similar situations! One thing that I didn't quite expect to feel was how different our situation is to most others. I have a dear friend that has several children that are medically fragile. I've heard all that she deals with, but yet that's not our daily life. Most of the parents I met deal with very similar situations on a daily basis.  It was really hard for me to relate and made me wonder if I was right for the group! I honestly had not thought about that part of this journey! What is rare? What does it really mean?



1. (of an event, situation, or condition) not occurring very often: "a rare genetic disorder" synonyms: infrequent, scarce, sparse, few and far between, thin on the ground, ...

All of our kids and the patients ARE rare, but yet they are all so different. I've always felt that when people look at Issac they don't see anything "different", "rare", etc.  Beyond Issac's size and facial features I think most people look at him as an "average" kid. I wouldn't call him medically fragile, but yet we have still faced many of the same situations these families have. When you look at a doctor's visit summary we have half a page + of things listed that Issac is dealing with. We might not be able to truly understand the feeling of having your child hospitalized multiple times, but yet we can understand searching for years for answers. We've known for almost 10 years that something was "different" and going on in Issac's life. We do have some answers now after spending a week at Duke and yet in some ways the search is still going on. We now have to learn what our information means. We've wanted answers for years, but yet in some ways we still don't have much.   I've gotten to the point where when we test I'm not counting the days for results. I think after you don't get answers for so long you start to feel that way. When we do gets answers now I'm excited, but currently those answers don't change our life. At some point we may get information that will change Issac's future or we'll need to plan differently, but for now our current plan is working. 

As one parent said we are now a club and it's nice to be in that club with others that understand. I'm excited to be able to reach out to others and help them digest the information they get. Even if your child doesn't have the same gene, syndrome, disease, etc. every parent still wants that person that can understand them in a way that many of their friends and family members can't.  

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