Starting therapy AGAIN

The last week was filled with therapy re-evaluations, and new schedules to pack in our weeks. We have one more and an appointment and one more evaluation that I am not sure we will even qualify to get the service.

The OT appointment was really good. I LOVE the new therapist. The sad thing, she didn't even last a year! Though Ty needs OT she is leaving so we will probably only see her one time before she leaves and we don't know when a new OT is going to be there.

Because Ty is sometimes hard to understand we were starting at square one. Luckily, this new therapist had seen Ty when she was a student so she remembered a few things and was amazed he was talking. It made it much easier to do therapy when he was able to tell her some things.

We did shapes, and she timidly asked if he knew his shapes when he nicely asked her if he could have the "Octagon please!" After that it was a one track basketball mind. He did really well and he does need about 2 hours of OT a week but since he is getting some at school we are opting for one hour every other week so we can do PT as well.

The PT dude... is kind a Prick. ( I wanna say douche but my mom would get mad) He really is a jerk and I dislike him VERY much. I requested a new one but that didn't do anything so we are kinda stuck. Thank goodness he has a student with him that is doing all the work.

First, he is really condescending. I never EVER feel like he listens to what I want or that what I WANT is not a option. He doesn't want limits set on Tyler but sets limits for him saying he can't do this or can't do it good enough to count. Second, NEVER tell a mom that they are not sure of their kids ability. Trust me. I can tell you what we can and can't do and be realistic about the rest. So back off!

Lastly, NEVER,ever,ever, EVER ( did I mention EVER) hint to a mom that she is not "dedicated" to her child because we had to stop therapy or decided to stop therapy after a surgery. How do you know what our life is REALLY like. You go home at night to your "normal" family and we are expected to go from therapy and spend 3 more hours IN therapy at home. OK. that seems realistic.

As we qualify for weekly appointments but ,well he will not see us if we see any of the 2 therapist that we are required to see. We would need a day when it is JUST him. Because he doesn't feel that Ty can participate in his activities if he has anything else. We are forgetting the fact that we LIVE IN LEHI! That is a 55 minute drive. Not to mention the cost of gas is awesome and the therapy for speech is 30 whole minutes. Whatever! I think we will do what we can.

So needless to say therapy was a beast. I left super discourage, late and pissed off. Almost in need of calling my OWN therapist. The worst was when he PROMISED Ty he could take home a bike if he pedaled 4 rotations on his own. Ty got 3.5 so he didn't get the bike that was promised. I WAS PISSED. After much contemplations I did call later and had them reconsider and we were given a loaner bike this weekend to take for a few spins. Looks like we CAN do it.

What is best

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.

Quality of life?

Something had been brought up in a preemie group I am that got me thinking. A mom was posed with the question whether or not to continue care of their child after being diagnosed with a brain bleed. The parents were questioning what the "quality of life" would be for this child. They were asking for "stories" of kids with bleeds and what the outcome would be.

This is what got me thinking. What and who determines the "quality of life" for a child?

The medical dictionary defines quality of life as a patent's general well-being, including mental status, stress level, sexual function, and self-perceived health status. When a child is diagnosed with a brain bleed these "qualities" are in question.

The doctors have to give you worst case scenario. They HAVE to. I never would blame a doctor for telling us that. If they didn't and worst case scenario happened and they were not warned the doctor could be held responsible.

As a parent can we for see the future and decide who we would "handle" things? When we were given worst case scenario and the thought and option to stop care were presented ( in one way or another) we discussed wheelchairs and saying it didn't matter. As we have becoming further in the journey a wheelchair is harder for me to swallow. Could I guess that when we were discussing his future? Does that diminish is quality of life?

The answer to me is an easy one. No on can determine quality of life. Tyler has a wonderful quality of life. He is happy, healthy and has the necessities of life. He is fed, bathed ( often I might add) and clothed. He is played with, cared for and taught many things. Does he have limitations? Yes. Will he have struggles? Yes I am sure he will. Do you have limitations? I know I do.

How can you say that a child that is brain damaged doesn't have a good "quality of life" when there are babies that are born to drug addicted mothers or teenage mothers who can't take care of them. What kind of "quality" of life do they have?

I don't have all the answers. What I do know. My quality of life is better because I have Tyler in it. To me that is all that matters.