Our New Adventure
I haven't posted since March. Many many updates.
Travis's health is slowly but surely improving. The twitches, facial grimaces, and all other dystonia/myoclonus-type involuntary movements seem to be getting less frequent and less volatile the past few weeks. He still has bad days when it all comes out, but those days are farther and fewer between the good days. Many of you have heard that he finally has a diagnosis after a week at the end of July in Minnesota at the Mayo Clinic. After a dozen appointments/tests/movement labs, it was decided that Travis has a treatable, non-degenerative disorder called "Functional Movement Disorder." It is treatable by cognitive behavior therapy (CBT), which basically means he needs to retrain his brain to suppress the involuntary movements. We are hoping he can start a CBT program in the next month or so.
We moved to Columbus, Ohio last week. So far, we love it! Travis starts his PhD program in Biophysics on Tuesday.
As many of you know, we are expecting our baby due New Year's Eve (12/31/16). We have learned this baby is a boy, and we have named him Theo Harris (not sure on a middle name yet). Theo means "gift of God," and that is exactly what this baby is. We are so very excited about this addition to our family. I started feeling him moving a few weeks ago, and he hasn't stopped since!
We have recently learned that our sweet baby has Down syndrome and a heart defect (an AV canal defect). We learned the results through a genetic blood test and a detailed anatomy ultrasound. We will be working with a team of doctors through out the pregnancy, including a genetic counselor and a pediatric cardiologist. Little Theo will need surgery on his heart as a newborn, and luckily we have the best cardiologists here in Columbus.
Of course this news has left us anxious, upset, and shocked. We are still adjusting. If you see us, we still may be showing signs of shock, but we have learned that we will move away from this time of turmoil to a place of excitement and amazement. One thing we know for sure: we love our baby boy and we hope you will join us in welcoming him.
We know that you must have many questions, and we will try to do our best to answer. We have a lot to learn and prepare for in the next few months. We have already started to research, and you can look at downsyndromepregnancy.org for some basic information. Some of the most important things we have learned are that each person with Down syndrome is a unique individual, and that recent advances in medicine, education, and acceptance have greatly improved outcomes. More importantly, we have learned that our son will live a rich and rewarding life, and will enrich ours as well.
We know many of you may not know what to say to us when you see us - and we understand that. We're not sure we would have known what to say either. We would appreciate if you could avoid saying, "I'm sorry." We would like to accept and embrace this little one as a gift, benefit, and blessing, not a loss, penalty, or hurt for our family.
We will keep you updated about any issues that come up and when our little Theo arrives. Thank you so much for your love for us and for welcoming our baby. The opportunities for people with Down syndrome are better than ever, and we are looking forward to the bright future ahead of Theo.
Travis's health is slowly but surely improving. The twitches, facial grimaces, and all other dystonia/myoclonus-type involuntary movements seem to be getting less frequent and less volatile the past few weeks. He still has bad days when it all comes out, but those days are farther and fewer between the good days. Many of you have heard that he finally has a diagnosis after a week at the end of July in Minnesota at the Mayo Clinic. After a dozen appointments/tests/movement labs, it was decided that Travis has a treatable, non-degenerative disorder called "Functional Movement Disorder." It is treatable by cognitive behavior therapy (CBT), which basically means he needs to retrain his brain to suppress the involuntary movements. We are hoping he can start a CBT program in the next month or so.
We moved to Columbus, Ohio last week. So far, we love it! Travis starts his PhD program in Biophysics on Tuesday.
As many of you know, we are expecting our baby due New Year's Eve (12/31/16). We have learned this baby is a boy, and we have named him Theo Harris (not sure on a middle name yet). Theo means "gift of God," and that is exactly what this baby is. We are so very excited about this addition to our family. I started feeling him moving a few weeks ago, and he hasn't stopped since!
We have recently learned that our sweet baby has Down syndrome and a heart defect (an AV canal defect). We learned the results through a genetic blood test and a detailed anatomy ultrasound. We will be working with a team of doctors through out the pregnancy, including a genetic counselor and a pediatric cardiologist. Little Theo will need surgery on his heart as a newborn, and luckily we have the best cardiologists here in Columbus.
Of course this news has left us anxious, upset, and shocked. We are still adjusting. If you see us, we still may be showing signs of shock, but we have learned that we will move away from this time of turmoil to a place of excitement and amazement. One thing we know for sure: we love our baby boy and we hope you will join us in welcoming him.
We know that you must have many questions, and we will try to do our best to answer. We have a lot to learn and prepare for in the next few months. We have already started to research, and you can look at downsyndromepregnancy.org for some basic information. Some of the most important things we have learned are that each person with Down syndrome is a unique individual, and that recent advances in medicine, education, and acceptance have greatly improved outcomes. More importantly, we have learned that our son will live a rich and rewarding life, and will enrich ours as well.
We know many of you may not know what to say to us when you see us - and we understand that. We're not sure we would have known what to say either. We would appreciate if you could avoid saying, "I'm sorry." We would like to accept and embrace this little one as a gift, benefit, and blessing, not a loss, penalty, or hurt for our family.
We will keep you updated about any issues that come up and when our little Theo arrives. Thank you so much for your love for us and for welcoming our baby. The opportunities for people with Down syndrome are better than ever, and we are looking forward to the bright future ahead of Theo.
Baby boys are so much fun. Congratulations! I love your positive attitude about life. You are going to have a very enriched life with your family :)
ReplyDeleteCongratulations on the upcoming birth of Theo Harris. Another cousin, how exciting!
ReplyDeleteCongratulations! Diagnosis! Graduate school! Baby boy! I agree that the opportunities for those with down's syndrome are better than ever! Your little one could share a birthday with my baby girl, born Dec 26, 2015. Yay December birthdays! I'm excited for you :)
ReplyDeleteYou two will be perfect parents for my perfect grandbaby. You both inspire me. xoxoxo
ReplyDeleteJust when I thought I couldn't love you two any more. . .this little man will bring the Celestial Kingdom right into your arms! Nobody deserves this miracle more than the Harris family:)
ReplyDeleteJust when I thought I couldn't love you two any more. . .this little man will bring the Celestial Kingdom right into your arms! Nobody deserves this miracle more than the Harris family:)
ReplyDeleteWe are here for you. Watch out for the Buckeye contagion on "The OSU" campus and enjoy your experience there.
ReplyDeleteI didn't know you still had a blog! This is awesome! I remember your blog when you were in Africa, my favorite story is the one about you getting rides to the Internet cafe on the scooter just to write on your blog. I would share your stories with my classroom and some of the kids still remember them, actually the stories were probably the best part of Social Studies, or drama, or Whatever I was teaching and needed a quick story for. I wanted to remind you of the 2012 Abby blog! So my favorites: (Actually, this is from Russia) 2/5/12 "I am awesome #1...I met my goal for doing one pull up with my hands facing away from me." 4/18/12 "I laugh so hard every time I get an umbrella letter." 5/23/12 "I can communicate somewhat in Russian...I am ready." 7/30/12 "I put the phone next to Sister Sanford's ear and she would either tell me what to say in response or pretend to be me." 11/4/12-"I know I said I wouldn't do this but I have joined the MTV choir, (just kidding-MTC)." 4/25/12 Subject:I saved the day...I finally remembered to dig the duct tape out of my suitcase and save the apostles from falling. 2/5/12 (back a few months) "I pray for you multiplie times a day. Seriously. I say a lot of prayers, some specifically for a few of you." (Forward a little ways) 9/5/12-"Pull up progress: I am up to 5 pull ups a day!"(Also in this email you mentioned buying pocket protectors lol). Same day-"from this experience I learned not to waste time and let frustration get in the way...even if I can't say it." 5/16/12 Subject:Hit the ground running..."we were given 20 skittles...for every word of English spoken we had to eat a skittle...about five minutes in I said the word "okay!" And only 20 minutes later I had just 11 skittles. (Abby, when I was teaching ESL the kids LOVED this story!) 4/5/2012 (one of the first emails from you)-"I thought it was weird to call someone sister, instead I just say, "Hey!", I didn't call my companion anything the first four days. Also on 4/5/12 "My brain is overwhelmed with Russian words. I have decided that learning Russian is NOT my priority." The end. Hopefully you find these quotes as memorable as I do! Obviously your emails were pages long and I only have these specific quotes for you to laugh at. Thanks to you a ton of kids learning to speak English were able to relate to me and feel like I could understand them even though we were laughing at some of your stuff. Sure I may have exaggerated some stuff but I have to remind you of how funny and awesome you are. Originally, I started this message to send you a picture of my class playing African music instruments that I've been wanting to send you and then I got distracted looking in my old teaching trunks. Between Russia and Africa I really don't know what you experienced but I remember I loved hearing from you and you are silly. Love ya!
ReplyDelete