JUNE 16, 2016: (this first post was originally posted in our private group that I started before Ana was born and still use to update close friends and family to this day – this was PRE- AMC Princess Ana)
Exactly one year ago today Anastasia was diagnosed with Arthrogryposis. My daughter was 18 weeks pregnant at the time. I remember that day vividly and likely will for the rest of my life. We were excited to find out what the sex of the baby was. I was hoping for a girl and she was hoping for a boy. We were joking around a bit in the ultrasound room about the fact that her arms were out straight like a zombie. We didn’t realize.
We found out she was a girl and I was over the moon excited and then the ultrasound tech gets up and says she needs to ask someone a question. I instantly knew something was wrong but I played it cool because I didn’t think my daughter knew what that meant and I didn’t want to get her all worked up and worried. My heart sank, my stomach hurt, my mind was reeling with the possibilities but I just acted like nothing was wrong and hoped they wouldn’t come back and give us devastating news.
When the doctor came in to take a look and diagnosed her with arthrogryposis I had no idea what it was. Neither of us did. He explained a little bit about the condition but when we left the office and got into the elevator, it was clear to me that she had kind of zoned out at some point because she just let a few tears fall and said, “I don’t understand what all of this means.” Again my stomach hurt and my heart sank, but I told her we would figure it all out.
The doctor had also told her that there could very likely be other things going on genetically, which couldn’t be seen on the ultrasound and that she had a limited amount of time to make a decision about continuing the pregnancy. They made arrangements to do both an amnio and an upper- level amnio but by the time the results came back, they would need to know immediately if she didn’t want to continue the pregnancy. I will admit, with her being as young as she was (19) and not being in a stable relationship/stable financially, etc. I didn’t know how she would be able to care for a special needs child and didn’t know what kind of quality of life the baby would have; so, I felt she should seriously consider her options. My daughter wanted to wait and see what the amnio results said and I wanted her to have as much information as possible to help her figure out what was best. I am so thankful that my daughter was SO brave.
I immediately went home from the appointment that day and started doing research. In those first two days, I’m pretty sure I learned everything that could be learned about arthrogryposis on the web. I read what the diagnosis meant, what the treatments were, what the prognosis was, and felt the gravity of all the ambiguity that surrounds this condition. There is so much you just have no way of knowing until the baby is born. I joined ARTHROGRYPOSIS and The Arthrogryposis Group (both groups on Facebook) and started reading old posts. I found Dr. vBs (Dr. vanBosse – Philadelphia Shriners) videos and watched them. I found videos made by kids and adults with AMC and watched them. I relayed all of this information to my daughter. Over the next couple of weeks, I took her to Planned Parenthood so she could talk to them about what it would be like if she made the decision to terminate the pregnancy. I made a consultation appointment at Mott Children’s Hospital with Dr. Li (Ana’s first Ortho at UM Mott) and took my daughter to meet her and talk to her about what it would be like if she made the decision to keep the pregnancy. I told her I would support her 100% no matter what she decided and in the end, both amnio tests came back normal and my daughter made the decision to continue the pregnancy so in that moment, I switched my focus to planning and preparing for a baby to come into our lives. Can you imagine? No Anastasia? I certainly can’t.
(Fast forward – My daughter left Ann Arbor 6 weeks before Ana was born and moved to Canada so, Ana was born in November 2015 in Alberta, Canada. After a concerted effort to re-establish a relationship with Ana’s father, my daughter decided it wasn’t going to work and moved back home. – The girls returned in Feb 2016)
It hasn’t even been four full months since the girls came home from Canada and Ana has started treatment here in Ann Arbor. It’s been just 108 days! Ana’s progress and the progress we’ve made together surprises even her OT and PT at times! Today at PT we checked most of the original goals Mr. Dan had for Ana off of the list and he had to start a new list with new goals! Today at OT Ms. Casey did some more e-stim on Ana’s left side and I watched Ana move her left arm and the thumb on that left hand to grab/hold on to toys while Casey played with her.
Ana just constantly blows me away with how determined and smart she is and how quickly her abilities are continually improving and I know it would not be happening like this if it weren’t for the AMAZING care Ana has had here, at the University of Michigan. Everyone we have worked with has been top-notch. The high-risk clinic at Mott, where my daughter finished out most of her pregnancy, was fantastic and the equipment they used was top of the line. Dr. Li has been a wonderful Orthopedic surgeon who always makes us feel super comfortable, Molly at O&P has done the most amazing job handcrafting Ana’s AFOs and personalizing them to her needs, and I can’t even imagine life without Casey and Dan. They are just as much my emotional support and my strength through all of this as they are a huge help to Ana. I look to them for guidance, support, encouragement, and confirmation that we’re doing the right things and it’s going to be a difficult adjustment when we start seeing them only monthly before too long here.
However, I’m excited to share that thanks to some initial leg work from Zak (the Dad of another local AMCer) our PT/OT/O&P team (Casey, Dan, and Molly) will be going to Philadelphia Shriners in November to meet and learn from Dr. VB/Dr. Z and the team down there ! ! This is a majorly exciting occurrence and I’m so grateful to all involved, that they were allowed/given this opportunity by Shriners and the University of Michigan Hospital System.
Over the past year, we’ve also had AMAZING support from friends and family, we’ve made many new friends, and we now have an entire network of AMC family available almost around the clock. Anastasia is just pure joy and even though it’s been a massive life adjustment, I wouldn’t want it any other way. She deserves the moon and stars and I intend to do whatever it takes to help her reach them.
Just one request before I wrap up this ridiculously long/sappy post and get back to our regularly scheduled spamming of photos and videos…June 30th is Arthrogryposis Awareness Day and I would like to ask all of our friends and family to wear blue on June 30th for Ana and all of the other AMC families.
The beginning of #AMCPrincessAna on social media – SEPTEMBER 23, 2018
This amazing, intelligent, beautiful, funny, joyful, and glorious child has been through two elbow release surgeries with Dr. Z., bilateral hip flexor releases and repeat bilateral tenotomy with Dr. vB, a frenulectomy (to release her tongue tie), and continual bouts of serial casting/taping to repeatedly correct her regressive club foot (left side). She has had countless hours of PT and OT with Mr. Dan and Ms. Casey, hours of painful stretching and bracing, massage therapy, cranial-sacral therapy, swim therapy. Recently she had a consult with Dr. Feldman at the Paley Institute in West Palm Beach, Florida, and we will be heading down there for three weeks in December for major double leg surgery, in an effort to get her up and walking independently early next year. She has continued to amaze everyone with her determination, her strength, her patience, the wisdom she has beyond her years, and her ability to smile and laugh through all of this and I have no doubt she will overcome every challenge put in front of her.
For almost three years now I have had the PLEASURE, the joy, the honor of raising this amazing little human. I have been so blessed with her presence in my life. I get to see her smiling face every morning and kiss that same face every night before bed. I get to read to her and teach her and sing with her and snuggle her and share all the best things about the world with her. I get to see her learn and grow and work and succeed and fail and cry and try again and triumph. It’s truly life-changing to witness, to be a part of, and I am SO lucky I can’t imagine it’s possible to love someone more. I can’t imagine life without her in it. I will always do anything and everything that I can do to give her the best of everything. I will always go to the ends of the earth to provide her with every tool she needs to succeed. I will
always be there to support her while still encouraging her independence.
You just keep kicking butt and taking names, Anastasia. You keep pushing your way through this life and I will always and forever promise to be there for you, my bugaboo.
Love, Your Nana.
Continued and accelerating GROWTH! – April 29, 2020
SO VERY much has happened since September 2018. There is no possible way I can share it all. Anastasia had major, bilateral leg surgery with Dr. Feldman in December 2018 and it was completely LIFE CHANGING! She healed fast and blew even Dr. Feldman away with how quickly she recovered and got to work. Ana was walking independently within 12 weeks of surgery! It has now been a full YEAR since she started walking on her own, unassisted. SO Mind-blowing! She can squat and practically run and she can almost balance on one leg for more than a second!
Ana has completed a year and a half of Montessori Preschool, she took swimming lessons, music lessons, Spanish lessons, ballet lessons. She is reading fluently at an upper elementary level now, it even surprises me some days! She is still studying Spanish but now she uses DuoLingo and Rosetta Stone and also studies Mandarin Chinese and Arabic. Her thirst for knowledge is insatiable and her memory, understanding, and execution are equally as impressive. Sometimes it’s hard to keep up with her! She just wants more, more, more!
I don’t believe we should expect any further surgeries to her lower extremities, with the exception of removing hardware from her femurs at some point in the next year or so. The lat to bicep muscle transfer we had scheduled for March 2020 for her right arm had to be moved to September 2020. Once that has been completed we’re looking at an ECRB>FCU transfer on her right wrist and then I don’t anticipate any other uppers surgeries at this time. While she is super functional at this point, she still cannot feed herself well, toilet herself, bathe herself, or manage other very basic health and wellness needs so the major goals for her physical abilities are to help her get to the point she can do those things on her own so she could live on her own as an adult, should she elect to.
I’ve been raising Ana alone for just over three years now and we have been through SO much together. All I really want to do at this point in my life is focus on loving her, raising her, and facilitating her education/growth/opportunities. It’s my #l thought when I wake up in the morning and my last thought before I go to bed…wait, I don’t sleep! 🙂 I am really hoping to continue staying home with her full-time once this quarantine is over, homeschool her, and occasionally travel together while we continue raising awareness for Arthrogryposis and growing her public presence. I’ve been working hard to make this goal a reality and now we’re finally starting to see some progress in that direction thanks to the love and support of the many wonderful people she touches along the way. I can’t wait to see what comes next!
** Ana exclusively calls me Mommy but when talking TO others will refer to me as Nana because she has a very clear understanding other family situation. I took guardianship of Anastasia when she was 4 mths old and I’m a single parent; so, I’m the only parent she’s ever known. I very much appreciate your consideration for both Ana’s privacy and that of her mother/father when it comes to any other details involved in this situation. We will not be discussing them or the private details of their lives as it is not our place and it is not relevant in the context of Anastasia’s day to day life/the content we share on this platform. Please keep in mind that Anastasia can read and frequently reads through comments with me as well as reads your comments on our LIVES. Thank you for your understanding and respect.