Welcome to the Conte family blog. This blog was established to keep our family and friends "in the loop" as the days and years pass between our visits. As always, feel free to leave your comments on each post!
We are constantly reminding ourselves to live one day at a time. Sometimes this is easier said than done.
In February, we finally got to see Dr. Ashizawa, a neurologist who specializes in Myotonic Dystrophy, new to the University of Florida in Gainesville. We found him because he serves on the MDF board of scientific advisors. So, Dave, my sister Jenny, Kate and I headed to his clinic on a Friday afternoon, while Charlie played at Glamma & Jack's house. While I won't get into all of the specifics of the appointment, I can say that we left with a real sense of having just talked to an EXPERT...the first doctor that knew EVERYTHING about this disease. The appointment was filled with honest information, some of which was hard for us to hear, but we left with great hope for our family's future. We could tell this man was dedicated to helping the Myotonic Dystrophy community and to finding a cure.
About a week later, my dad's DNA test results came back with a positive diagnosis for the disease. While we were glad to find the source of the gene, it was still difficult to come to the realization that my dad had it and that I had it too. We are ever so grateful that my dad's symptoms are minimal and that is a big thing since he turns 70 in April.
Soon after this, we decided that we would unite as a family and fight back against this disease! So, we have decided to throw a BIG BIRTHDAY BASH to celebrate "Grandpa's 70th Birthday and Kate's 1st Birthday" and put a fundraising purpose behind it...Research dollars for the Myotonic Dystrophy Foundation! We are so excited about this kick-off to our fundraising adventures and can't wait to celebrate with all of our family and friends on April 17th. If you would like to make a donation to our cause, we would appreciate it!
So, here we are....trying to live one day at a time, but still planning for the future!
Back to blogging again...finally! Dave and I had a date night tonight and went to see the movie "Extraordinary Measures." This movie was about a family with two children with Pompe's Disease, a serious muscular dystrophy, that in recent time has had a major scientific breakthrough in the treatment of the disease. We cried through the whole thing, but left with a sense of HOPE and renewed effort to not let Kate's diagnosis beat us!
Having said that, we also felt it was time to post our Christmas/New Year family letter. It's a little quirky, but hey, so are we and you know....it truly captures us in real life. So, if you are up for the read, continue on and enjoy! (Just keep in mind Dave's saracastic sense of humor as you read.)
Hello to all of our friends and family. With the holidays and everything else we realized we have not updated our blog recently. We know you all are dying to know more about us. Heck, we can’t get enough of ourselves so we figured you all must be dying! In theory this can be counted as a sort of belated Christmas letter but only posted on a blog and not mailed to you. We learned over the holidays from some very good friends (or maybe not….hmmmm….may need to reevaluate that) , that Christmas letters about your family are very narcissistic and that no one really cares. Soooo, we stopped writing ours at that point and are just now picking up the pen again. We will only post on the blog so as to not assume that you want to read about us, but if by some chance you are at that point in life where you are sitting on the couch looking for something to do and your options are to stick a fork repeatedly into your eye or read this….well, we are now giving you the option.
As a family, we have grown larger and closer this past year. We were blessed to welcome our little Katherine (Kate, Katie, etc…) Elizabeth on May 11th, making us a family of 5 (counting our dog Jack of course.) Kate helped us make the gender number even while throwing off the balance for the grandparents (4 boys & 5 girls for the Roys and 2 boys & 3 girls for the Contes.) And speaking of the Roys and Contes…we have spent LOTS of time with them this year and have LOVED it! We spent a week in June with the Roys at the beach and a week in July with the Contes in the mountains this summer. We took a multitude of pictures and shared them on our family this blog site.
Dave is currently the Chief Technology Officer at the Schultz Center for Teaching and Leadership. When he isn’t working or fishing, he can be found wrestling and playing all kinds of things with Charlie, who simply adores his daddy. (In fact, when Charlie’s teachers ask him what he is thankful for at school before they pray, he ALWAYS says “my daddy.”)
Elizabeth (or Bissy for all you Keystone folks) is busy being a stay at home mother and loves her time at home with Charlie and Kate. As you many of you know the Doctors appointments and therapy sessions for Kate take quite a bit of time, patience and juggling. The hope is that with time the medical demands for time will decrease. In her spare time (yeah-right!), she has been teaching some online courses.
Charlie turned 2 in February and started preschool in September, attending 2 mornings a week. This has definitely been a year of “adjustment” for Charlie, learning how to be without mommy and share mommy time with his baby sister. He just adores Kate though and is such a good helper. He often asks to hold her and loves to sing and talk to her. He is ALL BOY and full of boundless energy, so he really looks forward to daddy coming home after work to PLAY, PLAY, PLAY! Charlie has excelled in riding his tricycle throughout the house at full speed narrowly missing walls, dog and toes. Now, there are times he miscalculates his speed and distance which can lead to disastrous results. In typical Charlie fashion he gets a bit of a stunned look with the occasional whimper. At first you think it’s because he is scared and possibly injured but no, generally it’s because he is in shock that he didn’t make the turn (or that his last minute braking is ineffective when combining wood floors and plastic wheels). In Charlie’s head he lives and dies by the “if at first you don’t succeed, try and try again until you do.” We just fear the tricycle wipe outs are only going to lead to more dangerous adventures as he gets older.
Now, Charlie really is a neat kid (seriously, just ask his parents but whatever you do don’t ask Uncle Dana. He is glad he’s not his ;-)! What we as parents are trying to figure out is where on earth did he get his sarcasm, shit-eating grin and well, most proudly, his foul language. We are stunned and really investigating this matter. Must be school…right? OK, it’s his mother! We are really trying to nip the foul language part. Dad just has to stop hurting himself with tools and watching FSU football in Charlie’s presence. We are looking forward to a wonderful life with Charlie as our son and can only sit back and join the wild ride that we are sure he is going to take us on.
Katherine has just turned 8 months old and is such a sweet, gentle baby girl. Many of you know that she had problems at birth and was diagnosed in August with Congenital Myotonic Muscular Dystrophy, a genetic condition with no known cure. Her muscle tone is low, causing developmental delays in her movement and feeding progress. She sees a physical therapist, speech therapist and many medical specialists who are keeping a close eye on her progress. She just loves to watch Charlie as he bounces around the family room. She does on occasion give us her own special smile when she wants.
Upon learning of Kate’s condition, we were shocked, stunned and in partial denial but rebounded after about a week and decided that this wasn’t helping Katherine. We decided to attend the Myotonic Dystrophy Family Conference in California in October, where we met other families, learned what to expect in the coming years and learned a great deal about the exciting research being done at present time.
Katherine has really started to show herself lately. Aside from her obvious current physical limitations she truly is the kindest, gentlest soul. We really have fallen in love with her and know that she totally follows in her father’s footsteps. His ability to be gentle and kind shines though in Katherine. We are hoping that it will eventually soften her mother up a little. All joking aside, we know that once Kate works through her early struggles in life she will go on to lead a very influential and caring life that will make this a better world.
The rest of the Conte family is plugging along. Jack continues to run scared from Charlie wishing he could just be left alone. Elizabeth and I are just enjoying our time with our family and making plans for our family’s future. We are hoping to start an annual fundraiser to support the Myotonic Dystrophy Foundation by year’s end. We would ultimately like to do two different annual events but will start with just one. We are knocking around a couple of ideas right now that are different than the typical golf tournament. In Jacksonville that effort has played itself out. We are always open to ideas so if you have any, please shoot them our way. We will also be looking for any volunteers that may be needed for the events so when the time comes and if you are interested please let us know. We are thinking for the announcement of our event we will do something small like a fireworks display downtown with rotating spot lights and maybe a small musical act like Garth Brooks. Stay tuned!
Lastly we want to thank all of our family and friends who have been by our side the past 8 months or so. We are truly the luckiest family in the world and without people like you in our lives we would be lost. Your support has been AWESOME!!!!
Love,
David, Elizabeth, Charlie, Katherine and of course Jack
In the beginning of October, Dave, Kate and I flew out to LA to attend the Myotonic Dystrophy Family Conference. We were excited, yet nervous, about being confronted with the disease so directly, but know we definently made the right decision to attend. We met many wonderful families, got "best practices" from experienced parents and learned all about the latest research from the experts.
One of the biggest things that we walked away with was the fact that there is no "road map" that tells us where Kate is headed or what to expect. We know that she will continue to see specialists for eyes, heart, digestion, orthopedic, neurology and genetics as well as physical, speech and occupational therapists. We still don't have DNA-tested answers for our family genetic situation, but we aren't rushing into this area since I and Charlie are symptomless.
One of the most exciting parts of the conference for me was getting to meet Lisa Vittek, the Director of the Myotonic Dystrophy Foundation (MDF) and mother of Kayla, a 4 year old girl who also has CMMD (Congenital Myotonic Muscular Dystrophy). The day that Kate was diagnosed, Lisa found my announcement post on this blog and left a comment for me, reaching out her hand in support. When I discovered it later that night, I cried and closed my computer. At the time, I just wasn't ready, but a few days later, I realized that this diagnosis wasn't going away and I needed to learn everything I could to help my daughter make progress and stay healthy. It was so nice to finally meet her and her family at the conference and spend some time talking. I even got a hug from Kayla the night before we returned home. We also met a sweet little girl, Raina, and her family. Raina had the same start that Kate has had and is now 7 years old. She is walking, talking and has the most adorable face. I've posted some pictures of the families we met.
Even though this was a "medical trip," Dave and I really enjoyed our time. Kate is such a laid-back baby, we even took her on a tour of Hollywood. It was fun to see the stars' homes and visit all the iconic sights. Charlie had an awesome time with Glamma, Uncle Luke, Aunt Karen, Cousin Grace, Aunt Jenny, Uncle Tommy and Cousin Josh....thanks for making his time away from us so special and fun!
If you are looking for more information about this disease or how you can help, check out www.myotonic.com, the website for the Myotonic Dystrophy Foundation. Dave and I are talking with MDF about how we can be involved. Check back soon for our plans!
Dave and I celebrated our 5th wedding anniversary on Sept. 4th. We got to spend a little time with Deeks and Dianne when they came to visit and stayed at Marriott Sawgrass. Charlie loved the pool time and the playground! Kate was content hanging out in the shade. We even ran into our good friends, the Davey family, out there. That same weekend, Aunt Jenny and cousin Jordan came to visit. Charlie was SO sad when Jordan had to leave...he hugged her tight and said "Jordan stay."
Shortly after Kate was diagnosed, we learned that my dad had kidney cancer. This past Tuesday, he had surgery to remove his affected kidney. He is now at home and recovering well. The surgeons said everything else looked good, so they are hopeful that he stays cancer-free.
Charlie started 2 year old preschool twice a week and finally had his first day with a"no tears" goodbye. He turned around, smiled and blew me a kiss....now, I wanted to cry!
Kate turned 4 months old and has continued to get good results from all of the specialists she is seeing. She is making great gains in Speech (feeding) therapy and can now take a bottle almost like a normal baby. She is working hard at physical therapy and her PT now comes to the house twice a week to work with her. Kate responds very well to her and her strength is improving. She actually lifted her head off of the floor by herself for the first time! Her little foot has decided it wants to continue to turn in (even after casting), but we are hopeful it will correct before she is ready to use it to move around. She is such a sweet little girl and LOVES to look at faces. She is growing and has reached the 25th percentile...hooray Kate!
October 1-5, Dave, Kate and I are attending the Myotonic Dystrophy Foundation Family Conference in Manhattan Beach, CA, so we can learn everything we can about this disease and how we can help our little Baby Kakes grow and prosper! Charlie has a date with several relatives while we are away so he can have some fun!
It's been quite the whirlwind since Kate's diagnosis in August and I know many of you are wondering how we are doing. The best way I can explain it is this: it's a grieving process. We have been through several stages of this process already and have basically come to the conclusion that no matter what, Kate is our baby girl and was born into our lives for a special reason. We will do whatever it takes to get her the best possible care and love her as much as we can. Learning that she got the disease from me has been quite unsettling, but even more concerning is knowing that there is a chance that Charlie might have it as well. This is a wait-and-see disease, so only time will tell. Having said all this, we still have our moments when we mourn and have a good cry, but overall, we are doing great. We are taking one day at a time and trying to live life as normally as possible. We love spending time with our family and friends!
Charlie was so excited about starting school that he didn't fall asleep until after 10pm last night. We packed his backpack and his lunchbox, set out his "first day of school" clothes and "school" shoes, and put together his little bag of gifts for his classroom (Lysol wipes and yummy "safety-pops"). He was chanting "school, school, school" on our short little drive to school and walked in all smiles while holding his daddy's hand! When daddy turned to leave though, poor Charlie wouldn't let go. After his sweet teacher pried him loose, we said our quick goodbyes and stood silently in the hallway (out of his sight) until we couldn't hear him crying anymore. No tears from mommy or daddy (we were trying to be tough), but daddy felt really bad!
Poor little Kate got toted along on this little outing, but was a good sport. I'm sure Charlie is having a splendid time, playing with his friends Caroline and Ethan and others he is meeting for the first time today. Only 40 minutes until I get to go pick him up...I can't wait! Hopefully Thursday will be an easier goodbye, as only mommy and Kate will be dropping him off at school...we'll see!
Oh, the love of a two year old boy...he is completely obsessed with "Mac" trucks. He plays with them at home, begs to buy them at stores, looks for them on the highway and complains when they don't have trailers attached to them. Daddy, of course, LOVES this stage of Charlie's and plays "trucks" with him all the time.
Well, thanks to my cousin Darin, from Alabama, Charlie got to ride in a real "Mac" truck (it was even red, like Mac in the Cars movie). Darin came to visit the past weekend and brought his truck with him. After a delicious lunch at Aunt Sue's house and a visit with all the Roy/Green relatives, Darin let Charlie ride in his big truck all the way to the truck stop, where he parked it. Charlie was a little nervous, and sat quietly the whole trip, but his eyes were big and full of excitement. Needless to say, it has been the topic of conversations with Charlie and he is already asking when he can ride in Darin's truck again! Thank you Darin for making my little boy's day!!!
When ordering from Amazon, be sure to go through the AmazonSmile link here and select "Promise to Kate" as your designated charity. A percentage of your sale will be donated directly to Promise to Kate Foundation. Every penny counts!
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