Wednesday, May 13, 2015

Prayers for Team Laynee

My little bear & I, also known as "Team Laynee," are off again on an adventure, a search for answers.

Daily, I thank God for a healthy child. I know what we are fighting is nothing compared to what others have to endure.

But, at the same time it hasn't been easy. It's been stressful, scary, frustrating, and does cause some serious issues or problems.

Almost four years ago, Laynee lost control of her bladder & later a lack of control of her bowels followed.

We have tried many different medicine regimines, followed diets & even physical therapy.

The two of us  have traveled hours away to see specialists, we have seen numerous here in Grand Rapids as well. We have had some scary tests done to rule out certain cancers; we have had two MRI's done to check her spine & her brain. We have ruled out many, many scary possibilities. We have found some of the problems, some of the issues, but still some are unanswered.

There are many different pieces to the puzzle that are not always easy for mom to keep straight & pieces that cause doctor appointments to last so long as one piece can affect another in an opposite direction. I put a lot of pressure on myself knowing if one piece isn't kept under control, her life-long complications could be horrible.

I took her to PT for months & watched on her computer screen how her muscles work against her & for whatever reason, her brain cannot connect to the muscles to make them work correctly. She would try always giving 100 percent with no success. We would walk out of PT with her so frustrated & sad & wanting to know why her body was this way.

There have been so many days of tears, frustration, anger, embarrassment, and fear for her that at times all I can do is hug her & tell her I love her. A few months ago as we were at a point where progress was going backwards & my once pretty positive bear turned into a very negative one, I knew I need to push again for better answers. Her self-confidence was dropping, she was so scared of being at school, frustrated that she would never get better & a constant sad "I'm sorry mommy" to me even though I always told her she had nothing to be sorry for.

We met with a pediatric surgeon here in GR & started 6 months of research with him. We have gone through some different steps, different trials. Right now, we have been able to significantly lower daily accidents with her current regimine but it was just a temporary option, a step to trial & error her body. It is not something she can do long-term, in fact the last two weeks has caused some issues & some strong pain.

Her surgeon here has referred us to one of the best Children's hospitals for kids with these issues at Nationwide Children's Hospital in Columbus, Ohio. She & I begin another adventure for the next eight days there for a clinic where she will undergo some testing, we will trial & error some medicine options or regimines, meet with some awesome specialists & meet with one of the experts on the sacral nerve stimulation procedure to see if that  surgery could be an option for my bear.

We would love some prayers for our safe travels for us, some prayers that we can find more answers & a better, healthy lifestyle. Prayers for this mama to settle her nerves a little, I'm a little on the anxious side. Also, prayers for my little miss Jacee who is already missing mom & today is her birthday!