Three Years Ago…
Three years ago this week, we pulled out of the driveway of our home in Texas for the last time. The place that we were so excited to bring our precious baby girl home to and where we planned to raise our family. We left a church family that we loved, I resigned from my teaching position at an incredible and unique school, and we said good-bye to many great friends that were there for us through my pregnancy and the early days of Faith’s life in the NICU. I miss my friends in Texas so much! You all will always hold a special place in my heart. We left a lot but were so thankful for a promising job opportunity for Mike and did what we felt was the right decision for our family. We moved back to St. Louis to be closer to our families and for Mike to start a new career path. We arrived back just in time for Faith’s 1st Thanksgiving and started a a new chapter in our life.
Not long after our move, I got a call from the genetic counselor who works with ican families and received Faith’s genetic testing results. Faith had a mutation of the SOX2 gene and was diagnosed with SOX2 anophthlamia syndrome. The diagnosis helped us piece together many of the issues Faith was having but we still had a lot to learn and to continue to figure out. Faith’s first six months were scary for us as she was failing to thrive. We were in and out of the hospital as Faith completely stopped eating and was losing weight very quickly. Thankfully, the placement of a g-tube helped Faith gain weight and stay out of the hospital. Faith has had her share of GI issues including bad reflux but we seem to be at a much better place with her tolerating her feedings these days. Faith struggled with recurrent pneumonia episodes early on that seem to be resolved now with the help of a medication called Robinul. It reduces the secretions in her mouth and helps prevent Faith from aspirating her saliva. Faith still has challenges when she gets sick and often ends up in a great deal of respiratory distress and back in the hospital but we are so thankful for all that she has overcome. In the past three years, we have figured a bit more out about her brain. We know that she has a small pituitary gland which has resulted in various endocrine issues. Faith is currently deficient in two of the anterior pituitary hormones-cortisol and growth hormone. Faith struggles more than typical children when sick or undergoing anesthesia due to her cortisol deficiency. At these times, we give her stress doses of hydrocortisone. To address the growth hormone deficiency, we give Faith three injections a week of growth hormone. Faith has grown very well this past year and is even on the growth charts for height and weight!
Faith has a thin corpus callosum which makes it harder for the two sides of her brain to communicate. She also has delayed myelination of the grey matter of her brain which means her brain doesn’t look like that of a typical developing three year old. Otherwise, Faith’s brain structure appears pretty normal. Unfortunately, this still doesn’t tell us a lot about Faith’s potential. Brain structure may be normal but function is a whole different story. A MRI cannot show things at the cellular level. Doctors just don’t really know what the future holds for Faith or what her true potential is. We have been told and understand that things are not in Faith’s favor for her to do many things(walking, talking, or eating on her own) but we still keep the faith and continue to do everything we can to help her reach her potential. Faith’s progress is slow, but keeping her engaged and stimulated is so important as we continue to work with her. Only God know his plan for Faith and we continue to trust Him.
So much has happened in the past three years that I don’t think I could possibly sum it all up in one post! However, you are more than welcome to read through past posts. I wrote this post as I reflected about the past three years but also to summarize a bit of Faith’s medical issues and challenges in addition to being blind and hearing impaired. I know there are often new readers to the website that are just learning about Faith or have children with similar challenges looking for helpful information.
In all the challenges and struggles, God has provided for our family and continues to do so. Right now, I am trusting God that I am right where I am supposed to be and that I am doing exactly what I am supposed to be doing. I try to keep things in perspective and count my blessings all year long but I don’t always take the time to share them. In the spirit of Thanksgiving, I will share some of the things that I am most thankful for.
I am thankful for:
- The opportunity to be the mother to two incredible children. I find it amazing most days that God has trusted me with my two blessings. I am a work in progress and being a mother is a very challenging role for me. I thank God every day for Faith & Graeme. I am amazed at how fast Graeme is growing, changing, and developing. I am so grateful for all he is doing and the blessing that he has been to our family for the past 7.5 months. I know that he is a going to be a great brother to Faith. I look forward to watching these two interact more and more. I think they will both have a lot to teach each other! 🙂
- Everyone who helps us on our special journey of raising Faith. It takes a village to raise a child but with a special needs child you truly need all the help you can get! Life is even more challenging now with two children that are both completely dependent and usually need care at the same time. I truly appreciate family and friends that do even the smallest or simplest things to help out!
- To all the therapists, teachers, doctors, nurses, medical professionals, office staff, etc. that have gone the extra step for Faith and our family. It really does make a difference in other people’s lives to give 100%++!
- Faith helping me realize what is really important in life and giving me a different perspective on so many things. Her life is so full of purpose and she continues to be a blessing to so many people.
- Faith’s strength and resilience. Last spring when Graeme was born and we were still in the hospital, Faith got RSV and pneumonia and ended up in the PICU. I briefly saw her before they transported her to a different hospital and it was the worst I have ever seen her. She was in a great deal of respiratory distress. Every breath was a struggle and I was so scared. Faith has been hospitalized many times and has struggled through many illnesses but I am so thankful for her ability to bounce back.
- Faith’s smiles and giggles. Faith’s happiness right along with her health is our #1 goal for her. Every smile and laugh ensures us that she is a happy little girl!
- For a husband who is an incredible father to our children. Faith is definitely a daddy’s girl and responds very well to Mike. I love watching them play and laugh together! I love the interaction that Mike offers Faith & Graeme. It is such an important part of their development and so different than my interaction with them. Mike is always there for Faith through her struggles and demonstrates an amazing love for his little girl. I can’t tell you how many nights in the past three years he has gotten just a few hours of sleep. He never complains and accepts life as we know it! He has helped comfort Faith during many rough nights and always steps up when he just knows that I need a break. Faith sure does enjoy reading and cuddling with daddy!
I have so much to be thankful for and I bet you do too! Happy Thanksgiving!
Keeping the faith,