Appointment Details

We went to the genetics appointment last week and found out some very interesting information. We are so incredibly grateful to the team of doctors and geneticists from Upstate University. They have worked so hard to help us keep fighting even though the disorder took Drew's life. We were essentially given two options for testing to try and determine the genetic mutation or gene that caused this disorder. Our goal is to finally receive a genetic confirmation about which subtype Drew had and prevent future children from experiencing severe symptoms. In knowing the gene that is associated with this disorder, the hope is that we can test before other children are born. If future children present with this mutuation as a dominant trait (recieving both mutated genes from Robert and I) then we would be able to begin treatment immediately instead of waiting for the symptoms to begin.

The testing option Robert and I have decided to go with is called Clinical Diagnostic Exome testing through a company called Ambry Genetics. They are the company that pioneered the Human Genome Project. I attached a link to this post if you want to check out more about what they do. They only began this type of testing for individuals like our family within the last year. It is very detailed in how they do the testing but essentially they will pinpoint the known genes that cause this disorder and match any mutations we both have. Then, through the process of elimination they will get rid of any mutations that Alexis has because she is healthy; those could not have caused the disorder. It is pretty amazing that they can do this. Robert and I fasted and prayed this past week and feel strongly that we should pursue this testing. It will not only help our family to have more children in the future but we can pass all this information on to ensure that what happened to Drew, won't happen again.

Here is the kicker...the test costs $14,000!!! Thankfully we have just around $9,000 in the memorial trust fund that was created after Drew passed away. That means we are about $6,000 short right now. However, we are not giving up that easily. We will keep fighting.

http://www.ambrygen.com/ClinicalDiagnosticExome.html

Thank you all for continuing to remember Drew and our family as time passes. We will never forget him but it is comforting to know that he touched so many peoples lives in his short life.

Thanksgiving

We made it though another major holiday. The anticipation of the holiday was much more difficult that the actual day itself. We decided to have a turkey dinner as a family a few days before the holiday because Alexis and I drove to Pennsylvania to spend some time with my grandparents.  As you can see, we had the usual fixings, turkey, stuffing, mashed potatoes, gravy, green bean casserole, etc. It was very yummy. Alexis also decided to dress up for the occasion. She was a pilgrim!!

 Robert and I wanted to make sure that as we celebrate the holidays this year, to slowly establish family traditions to remember Drew. We both felt that on Thanksgiving when we are especially grateful for all the blessings in our lives, that if Drew were to "peak" in on us, we would want him to know that we wish he was there with us...that we haven't forgotten him.We decided to do this by setting him a place at the table.

 We made it to Pennsylvania and had a nice visit with family. We ate Thanksgiving dinner at my Nana and Poppop's house. It was nice to be around family but Alexis and I both missed Robert (he stayed home because he had to work). I was so proud of Alexis. She volunteered to bless the food before our meal. She said a beautiful prayer in front of nine people!

 

 Here are my grandparents. They are both amazing people! I love them very much.

 After dinner we sat around and talked. Mark and I spent some time looking through Black Friday adds. We really didn't have any intention of going shopping until Mark found the ad for night vision goggles!

 It was a beautiful weekend in Pennsylvania. Saturday morning we went to a park near my grandparents house that I played at when I was little. Alexis had a great time. It was a great way to burn off some Thanksgiving calories!

We are home now and back to the regular routine. I learned a lot from going through this holiday. Being around family is important but it was hard to be away from our home. Alexis found it difficult to sort out her emotions, especially because she missed her daddy!

Appointment Date

I have a lot to share about what has been going on lately, but i couldn't wait to share this news. We have been waiting for weeks for an appointment with the genetics team to help us answer many of the questions we still have about Drew's disorder. We really are trying to figure out what gene causes the disorder to prevent future children in our family from having serious complications like Drew did. This knowledge will also help doctors and researchers know more about this incredibly rare disorder.
We have an appointment on November 30th, 2011 to discuss with the team our options to get more answers. Yes...I said options..plural. The genetic counselor was very positive about several different options including one very new way to test for genetic mutations. This was great news! I know it will be really hard to talk about everything that happened and relive it all but I think it is a big step in our grieving process...
I promise to post how the appointment goes and the information we get! Thanks to all my amazing friends and family we can actually pursue these options because the trust fund and your generous support. Thank you!!

My First

I wrote a memorial article about Drew and his disorder and submitted it to an organization that raises awareness about rare metabolic disorders. I was so excited to see it up on their website this morning! It will also be published in the next newsletter! You can see the article at http://www.oaanews.org/DrewParke.htm and if you want to sign up for the newsletter you can do that at the organizations website!

Halloween

I didn't think it would happen but going back to work has made it difficult to update my blog. I wanted to share my experience in going through the very first holiday without Drew. It has been especially hard for different reasons than most people who lose a loved one. During the holidays you create wonderful, fun and lasting memories of the people you love. I have read and heard people talk about how hard the holidays can be after the death of a loved one because you miss those memories or family traditions. For us, it is different, because we never got to experience the holidays with Drew. That makes me terribly sad. When he was born, Alexis started to plan out our Halloween costumes. She was so excited to finally have someone to dress up with. At our church, families always dress up their children in clever ways. One year a wonderful family dressed up as Dr. Seuss characters.

 Alexis finally had decided on dressing up as a princess (of course!) and Drew was going to dress up as a frog. Some of the other options were a monkey and a banana, a farmer and a pea...you can see why she chose the princess!! This past week has been tough because every time she put on her Halloween costume it reminded me that we were missing our frog. When we were trick or treating I even saw a little baby dressed as a frog and I just about lost it. I shoved a candy bar in my mouth and kept walking.

Now that Halloween is over and I realize how incredibly tough that holiday was I am nervous for Thanksgiving and Christmas (which do not usually end with large amounts of chocolate sitting on my kitchen table). I was so excited to share with him our family traditions. I would love to hear from readers what their family does during the holidays to remember someone they lost. I want to establish a new family tradition that helps us remember Drew during the holidays!

Just In The Nick Of Time

Growing up I had only a few friends but we moved several times so I never felt like I had close friendships. Throughout my childhood, like almost any normal person, we had many "issues." when I was in those moments I never felt like I had alone there to pick me up when I felt like I was going to fall apart. This ultimately lead to a fierce dedication to never fall apart.

I have had so many moments where I feel like I am going to crumble...and just when my natural instinct...rather, learned behavior starts to kick in...I get a text, phone call or visit from a close friend. Just in the nick of time. I don't even have to ask...it's like she knows exactly what I need...before I even realize it.

Tonight, for some weird reason, I had the urge to can a bushel of pears I got from a member in our ward. What was I thinking. It was a lot more work than I expected! But...just in the nick of time...as I began to tear up with dozens of pears in front of me...Marci calls me and says "I am bringing dinner over in a few and I am going to help you can your pears!" it wasn't the end product that mattered to me, it was the process.

I feel so incredibly blessed to have a friend that is two steps ahead of me. I don't know what I would do without her. In a small way I feel like Drew has been the instrument behind this blessing. I know he is watching over our family. I can still feel his beautiful spirit...the same peace and love I felt when I would hold him late at night when it was quiet and I could relax. In the words of his big sister "I miss you Drewber baby...you will always be my only Drewber...mom, do you think Jesus calls him Drewbers too?"

Yes.

Reality hits hard

It has been close to two months and I feel like reality has hit me hard. I am back to work and enjoying it as much as anyone could. It pushes me to wake up and do something everyday. However, I find myself on the verge of a complete meltdown all the time...when I least expect it I crumble. The hardest thing for me right now is figuring out how to help Alexis and Rob when I know they are struggling. It is so hard to comfort her while she is in tears because I can barely keep myself together. I end up falling apart. She has joined a youth support group that has been wonderful for her. She was so positive and talks a lot about Drew after. I think I need one of those.

I have a lot I am trying to work on to keep myself busy. One amazing project has been doing family history. I know that sounds weird but my mom recently gave me tons of family history that I have been putting into a family tree worksheet online. It is really fascinating. My great great great great grandparents had three babies pass away before they were three months old. It leaves me wondering if they may have had the same disorder as Drew.

No matter where I am, what I am doing, or who I am with, the only thing I think about is my little boy. I miss his sweet s lie and beautiful eyes. I pray everyday that my memories will stay strong and i will never forget even the smallest detail.

I appologize if this is a gloomy post. I am hoping to hear soon from the genetics team to start some testing. Maybe then I can post a more positive note!