Thursday, November 19, 2009

Makenzie's Voice

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I sometimes feel like I am screaming but no one can hear me. Like my voice doesn't count.

Advocating for a child is VERY rewarding but at the same time can be the most challenging and frustrating thing you will ever face!

Some of you can imagine what it feels like to challenge a school district, insurance company, government funding agency, or even friends and family. These power houses want you to seen but not heard. They want to do things their way. They hide behind political red tape and policies. Some care... but not nearly enough. At the end of the day all go home to their own lives and issues and your child is ultimately forgotten.

After I received the call last night from the HHC about Makenzie's Neocate Nutra not coming in until after the weekend my heart sank. I left a message with the dietitian at the hospital and looked up a pharmacy I knew carried formula. I got up this morning and called the pharmacy but they did not carry it. I called the dietitian but no answer. I paged her and she called right back. She told me that she had left a message and e mail for the local rep of the company that makes the formula. I knew better then to leave it at that so I called Neocate myself. Within 5 min they had connected me to her and I had made arrangements to go pick up the last can of Nutra she had left!!!! Praise God!

When I picked it up I stood and talked to her about Makenzie and why it was so important for her to have this food and how thankful I was that she was able to provide it for my sweet girl. She told me that next week she would be delivering 2 cases to the hospital so if I should need anymore they would have some and told me if I EVER needed anything again to PLEASE give her a call!!!! Thank You for hearing me!

The dietitian never did call me back. I am not sure if the rep told her she had talked to me or if the ball was dropped and she went home ultimately forgetting about how important this was to Makenzie. Did my voice get heard?

Also this afternoon I met someone with the school district. Lets just say I am about as unhappy as I have ever been about this situation. I will not go into detail but as of right now I have scheduled a meeting with a specialized school. I want to see what they have to offer. Would Makenzie receive more? I don't know but I need to find out.

The teachers/specialists/aids are great! They love Makenzie! All of the kids in her class love Makenzie. Makenzie loves to go to school. She has so much fun. The district however doesn't want to do what needs to be done and in my opinion is meeting Makenzie's needs at a very sub standard level. But once again, political red tape, policies, and the need to do things their way. have drowned out my voice... Makenzies voice!

I still am not sure why this has to be so hard but it is! I want it to work. Maybe I am asking for too much. I don't think I am.

On a more positive note Makenzie ate......drum roll........ 9 oz today!!!!! WOW! She did great in therapy and all in all is still doing fabulous!!!!

God is providing and he is in control so I am going to take a deep breath and give the school thing to him! I will still fight but I will not worry. He know right where he wants Makenzie and he will get her there! Trust!!!


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mary clendinning said...

We have been away since the 13th and I have been catching up on your daily reports. It's so wonderful about Makenzies' improvement in her eating. We pray that it continues. Also interested in your return trip to Costa Rica. Good for you.

God Bless

Mary Clendinning

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