There is always something in the back of my mind that makes me question more than once. In fact ever time a major medical decision comes up I have that something that comes back to question. I wonder have we done what is best?
Most of them came second nature. Or really first nature. In labor at 25 weeks, knowing it was to early there was never a doubt or a wonder or a time that either one of us questioned what was right or what we should do. It was always we will do what we can.
Next came the bleeds and again that nagging thing in my head said are we doing what is best? The odds were against him. A Nurse practitioner talked to us and said that at some point if he was done fighting we would know. He would get infection after infection and sicker and sicker. He would make the choice for us. Till then we fight with him.
And so we did.
There were a million things that we have had to make decisions for. We have had to listen to a list of disabilities. We even said we would be ok with him being in a wheel chair if we had to. The list of choices go on. The choices also come with regular typical kids but these are the above and beyond those. not just the idea to not vaccinate or not bottle feed. It is things like do you give him a blood transfusion? Do you fight for more therapy? Where do we get the money to buy the braces? How do we get from point A to point B?
But we had said we would be ok no matter the outcome. One thing that I didn't know at that time was how hard it would be.
That doesn't change my love for my child. It does make me question a million times over am I doing the right thing for him.
Coming up in a few days is a big step to cerebral palsy management. Botox did a little bit of good but no enough long term. Baclofen is not an option right now so we are stepping it up to the next level.
While upping the stakes we are doing serial casting. We are putting phenol in Ty's gastric muscles to give them a break so that the underlying muscle can start to work better and correctly and his abductors again in hopes of getting is gait or walk more "normal." While making this choice to help him we are also making a choice for him. once that I wonder at times is will HE think this is best.
I feel so over emotional when it comes to my sweet baby boy because he is my world. I have loved watching him the last few weeks. We have seen some amazing strides and Dallas and I have had our very first real conversations with our child. He was and is the love of our life and the reason we get up ( so early) every morning. I am so glad I have him.
I just wish that voice in the back of my head would agree and not second guess anything or make me wonder if when he gets older will he be made at our choices. Will he thank us for doing them. Will they make a difference.
A voice of sanity and a peaceful feeling is what I am looking for this week!
We are doing what we think is best.