Kali just had her 5th Birthday a couple weeks ago!! I can’t believe how much she’s grown and how different our lives are from when she was born. It surely is true that time is your friend with Moebius Syndrome!
Kali is an incredible soul. She has strength that just oozes out of her. She has been through so much in her short little life and I consider every day I have with her a miracle.
Our little angel is a proud big sister to Lexie (3 years old). They love to chase each other around the house, read books, watch movies, jump on the trampoline and go outside together. Kali has a lot of things she really loves including, SpongeBob SquarePants, Mickey Mouse, pretty much any Disney/Dreamworks film. She also loves to hang out with her grandparents, play games, watch flashy lights, snuggle with her stuffed animals, listen to music, and she especially love to dance. She can spin around and around forever it seems.
As far as the medical side of Kali goes; she has a g-tube and a trach. She is on humidified air during sleeping due to the dry climate here in beautiful Colorado. She is solely g-tube fed and does not yet take anything by mouth. As far as we understand Kali is cognitively advanced. She is starting to work with a communicative device (which I think might be harder for me to figure out then her. Ha!) and makes plenty of wonderful sounds over her trach. Kali had her bilateral clubfoot treated via Ponseti Method when she was born and has been out of AFO’s completely for a whole year now. Her feet look perfect! She also had the strabismus surgery done when she was 2 to correct her crossed eyes and so far so good. We have not had to repeat it as the eye doctor had suspected. Kali is prone to getting extremely ill during the winter months due to the frigid temperatures and cold/flu going around. A small cold could put her in the hospital for several weeks if not months. That is why we stay inside pretty much all the time from October to May.
I don’t really feel like I have it all figured out yet. I don’t know if I ever will. My saving grace is my family and best friend, Kacie Neivesmassol (Her son Kevin also has Moebius syndrome). Kacie and I met through a Yahoo Moebius chat group and found out that we lived in the same region. We decided to move closer to them so that we could be together forever. I thank God every day that I have a friend I can share the good times with and laugh about the bad times. A friend that truly understands what this life is like.
I love our sweet Moebius community! I am so proud to be a part of it. I am in shocking awe as we continue to grow and get stronger every day! What a blessing it is to have a way to communicate and help each other through whatever life gives us. I’m excited for the opportunity to get more involved with this community as my Kali continues to get healthier and stronger. Always feel free to contact me if you have any questions about us and our journey!