Sunday, November 15, 2009


I had so much to say about the Expo yesterday but Makenzie had other plans!

This was the first annual DME Expo. It was put on by Variety, The Children's Hospital, and Kids Mobility. It was GREAT!

Every time I go to stuff like this I realize how many people I know and love meeting new faces!

I was able to sit and talk with the Vice President of Snug Seat about some of the problems that we are having with Makenzie chair. He offered to have them fixed and is going to send out the local rep along with the most wonderful seating guy you could ask for from United to get her chair fitted better! WOW!

I got our application turned into to Variety for funding on the trike that Makenzie LOVED to ride at therapy earlier this year.

A representative from Medicaid was there and I squeezed out some good info on the buy out program and also got a number to someone that may be able to answer some more of my questions from the state.

Then I talked a bit with a non profit that does conductive education here. It sounds like a great program but is about and hour plus away. I think I am going to check it out at some point but would probably be something that we would have to do during the summer.

Next it was Rifton. Had a talk with them about using a prone stander in supine. They agreed to send my awesome seating guy an actual supine stander to try for a while.

My door prize of the afternoon and the perk of closing down the expo was getting to borrow a Kid Walk to try out for a few days! Makenzie has the Pacer but she really liked the way Makenzie looked in the Kid Walk to we are going to try it out and see. Maybe we will ask the school to order her one. Who Knows... we'll see!

As I was driving home I was just so overcome with emotion. I never EVER thought that this would be my niche. It is! I so enjoyed my time there! I love all of the people and have a very in depth understanding of most all of it! I kept thinking about why all of those people/vendors were there. Ok yes, it would be a misconception to say that none of it was about advertising and money but really the bottom line is that they were there for MY kid! They were there for this VERY small population that Makenzie fits into! They were there for Cici, Noah, Julia, Emily, and Makenzie!

I felt so understood! I was surrounded by people that spoke the language of Special Needs! There were NO stares. Everyone said hi, and I got about a million comments about how beautiful Makenzie was. Amazingly none of them were started or finished with the typical, are you tired?, no maybe shy?, but you are so beautiful! I did not have to explain ANYTHING! LOVE IT!

Makenzie did great today as well! She has been eating like a champ! 7oz and over 200 calories! I am so so so so so so so so proud!

The last 4 weeks have been long! It has been VERY hard to stick with the feeding thing! There have been many days that I have just wanted to give up! I am so glad I didn't! She is doing so well! She has been eating a bit more then 2 oz without any complaint and doing it very quickly. There is very little gagging and only a cough or too here and there which is amazing!

We have an appointment with the dietitian tomorrow. I am hoping that we can come up with a good plan of attack in regards to adjusting her food depending on her oral intake! I am also hoping to get a script for an appetite enhancer. I have heard really good things about this drug and am hoping that it will help! I guess we won't know until we give it a go!

It is Monday again and this week isn't looking any less crazy! In fact maybe moreso then most! Oh well! I am sure GREAT things will come out of all of the crazyness!

Sorry that turned into a novel! Lots going on! Please keep praying!

Believe... Prayer Works!


Fighting Joey said...

I'm so jealous that you get to take a Kid Walk home. We ordered one a million years ago and we are still waiting. Insurance and Medical. URHGGGGGGGGGGG! That is so awesome that she is eating so much. Just think how much she will be eating when we go back to CR. WOW!

ferfischer said...

I'm so sad we missed you! Both Cici and Daddy weren't feeling that hot (cici with a seizure and daddy with a headache) so we tried to stick around but just couldn't make it. I wish we could have seen a lot of this stuff with you - I'm just hoping to get her chair soon! grrrrr.

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