So Frustrated.....

There are times when it seems like I hit a wall..... when nothing makes sense and I have no answers. It is a time when I pray for guidance and I get the same answer...."trust your instincts"..... nothing more and nothing less.

Here's the deal... We started "cathing" Madilyn's bladder in September. I told her Neurosurgeon and Urologist that things were going down hill for her with control at our appointment. They agreed that if we started ''cathing" things should improve. Well....its not helped. She has had to changed clothes several times a day again on a regular basis. She continue to soak herself at night even when I "cath" her before bed. I have tried every trick I know. She is complaining more and more about her back hurting. Her right foot is more swollen than normal...her foot looks huge even after she has worn her compression stocking all day. The other thing is this....a deterioration of strength in her right side. Her handwriting is being affected greatly and she has stopped sleeping through the night.

Attempt #1 to deal with this.....just try to get through it. Sometimes that involves pretending that this is normal even when I know better....

Attempt #2 to deal with this.... try to convince myself it is just a bladder infection wrecking havoc on her and that the handwriting is being affected because she doesn't want to do her work at school....

Attempt #3 to deal with this..... get enough courage to call her Doctor and tell them that I think they missed something at our last appointment.....getting there.....not there yet...... why? Because the last time I knew that something was wrong, it took them 3 months to believe me and then we spent 6 hours in surgery and a challenging recover. I was RIGHT! I hate being right sometimes.

So, why do I question myself over and over again. Why do I fret for weeks and then start the phone calls? I have been doing this for almost 7 years now. Why is it so hard sometimes? We have the best doctors on our team and they are like our family. Part of me says ride it out....the other side says....this is bad.

See why I am so frustrated! These are the moments when I wished I had a crystal ball! Ugh....today I must pick up that phone and make the call.