Friday, May 30, 2008

I am so thankful!!

Our appt at the hospital went really well. At this time they don't think that Faith will need the surgery on her arm...Yahoo!!

The second thing was that we were starting the process of getting a mic-key button...We had Pooky with us this time, thought it would be nice to include her and maybe she would behave better....yeah, we are leaving her home next time!! I love her so much but that strong will, you think I would know how to deal with it by now!!

When we went back for the mic-key appt, I asked Pete if he wanted to stay in the room or not. He said he would and I breathed a sigh of relief...this is really the first time that I felt like I was going to throw up, with everything we have been through. I thought maybe I would feel different that day, but nope...I was so sick!!

I stood outside the door with Pooky, while Pete stayed in the room with the dr and the surgeon. There was silence, then all of a sudden, a piercing scream...I was almost in tears. They don't freeze the area and we had decided against sedation.

She did only cry about 10 minutes, so it must not have been that bad, but oh, my heart broke during that.

Then they put a foley catheter in and showed us how to change the dressings and move the tube each day. And, that is what we have been living with for a week now. I don't like it at all!!

I went into the store with the prescription for the mic-key kit and they let me know that I should apply for ADP which is government funding for things like this. However, in order to be approved we have to say that she will be permanently tube fed.

I really felt uncomfortable with that. I feel very strongly about the power of confession (death and life are in the power of the tongue, Proverbs 18:21) and from the beginning, we have only spoken positive over her, and look how far she has come. So, to fill out a form, claiming that she is permanently tube fed was really bothering my consience.

I decided, before the dr signed that form, I would call my husbands benefits company and ask. They said that none of the feeding equipment is covered, but they would get back to me about the mic-key button.

At the store they had said that if we applied for the ADP then our CCAC (Community Care Access Centre) would then cut us off. We would have to pay 25% of everything we needed to continue feeding Faith. I would be ok with that, but it was going to add up!!

On Wednesday we got a call back from the benefits people and the mic-key button is covered 100%!! All we need is a note from the dr saying that we don't know how long she will be on it!! How amazing is that??

On Thursday I talked to our CCAC worker and asked that if we bought our own mic-keys, under my husbands plan, would we be cut from their organization? And she said no!! So, it is all working out and I don't need to confess anything bad about Faith to do it right!

Our worker also asked about a certain other funding that we had applied for, and I told her basically the same thing. In order to get that funding I need a dr's note explaining that Faith is "disabled". I just don't want to go there. I think that labelling kids is wrong, everyone is different and just because of that it doesn't mean that we are not "able".

Anyhow, that is my amazing update!! Oh, and at the end of June we are going to the NICU graduation party!! How cute is that? It will be a room FULL of miracles and what can be better then that???


  1. "A room full of miracles."
    I love how that sounds.
    I think it's amazing how when we stick to what we know God is saying to us (ie. not confessing bad things over Faith) that he works everything out.

  2. Even more good news! And I admire your strength, Ruth, to refuse to label your daughter or speak anything negative about her. You're a fantastic mother!

  3. Just because your child has a label does not make you a bad mom. It is unfortunate that our society requires labels to provide help for them but denying your child help because you refuse a label what about that. I have 2 children with labels and they would not be making the progress they are today without the help we receive. Each child is special and unique and I don't think God views me differently because my child has a label. One doctor told me he likes the word "differently" instead of "disability" These kids are just as "able" they just do things differently or in a different time frame then other children.
    Just my two cents!