The first year was quite the ride. With little to no information and lack of education, we were going in blind on a journey we knew nothing about, and no one could help us. Being a first time mom is scary enough, but being a first time mom to a child with unique and complex medical needs that no one seems to know anything about was unexplainably frightening.
Delainey did well at home. In fact, she thrived at home. Every doctors visit we attended left the physicians speechless, probably in the same way they left us speechless when they told us about her diagnosis.
Delainey went for her first surgery before the age of one to repair her cleft lip, then shortly after that she went for her palate repair. Both surgeries went well and she recovered in hospital quickly. Delainey started seeing a child development worker once a week for an hour and saw OT and PT one hour a month. We focused on getting her head up and neck strength as well as transferring objects from hand to the other. Its amazing all the things we take for granted on a daily basis. She has always been very responsive to all the therapy and does quite well.
Delainey adapted to all of her disabilities so very well. She started sitting unassisted around the age of one year. She would brace herself by using her hands to support herself but she did it so well.
I go back to her first year quite often to reflect back on how far she’s come and how much we have all changed so much since she has been born. I can’t lie and say it’s been all sunshines and rainbows but I can tell you that 90% of the time was. The bad times are so few and far between, and for that I am so very thankful for that or maybe it’s just my mindset and how I go about dealing with this all.
I know not all Trisomy 13 cases are as ‘enjoyable’ as ours has been. I see many families endure so many hard decisions and watch their children go through unimaginable surgeries and have to make such hard decisions. I thank God for this amazing child and for this journey.. I know regardless, Delainey’s days are numbered and she will have a shorter life expectancy than the rest of us but I cherish each and every moment. She is such a joyful and spirited child with such an old soul. I look forward to posting again soon, I wanted to write more, but Dee is making it known to me that it is time to get off of the computer and pay attention to her so until next time………
I am hoping to post more current material shortly, as she is approaching her 4th birthday, I just wanted to cover the beginning of our journey for those of you that are just finding us.
God bless.
Delaineys trisomy13 journey 