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Haleighs HOpe

Posted on July 30, 2014 by | 2 views

Hi everyone!!! I had a wonderful day! I stayed up most of the night but made up for it in love today! I gave Momma a big hug around the neck this morning and she forgot that it has been about 72 hours since she last slept. I only had 2 tiny shaking episodes today!!! Momma has finally became a Mad CBD Scientist and figured out the schedule for my medicine. Momma was tracking my seizures and found a pattern. Once she figured that out it all just clicked.

There were some questions about my momma getting a job. We are not worried because I am going to be her boss! Momma went to school to get her license to become a CNA. Colorado has a program where the parents can be their child's CNA and get paid for it. Momma starts on Thursday. Today the nurse came to figure out how many hours I qualified for. As Momma was going through the questions with the nurse, I could see her eyes filling up with tears. At the end, the nurse told Momma that she has never seen a child qualify for so many hours and she has been doing this for 18years. Momma couldn't hold the tears in any longer. Probably not the best thing for a mother to have to hear about her child. Momma scooped me up and just held me so tight. I looked up at her and smiled. We are going to be OK Momma. I have Haleigh's Hope on my side.

There was also a lot of confusion about the CNN article that came out yesterday. As everyone knows, we did not go through the Realm of Caring for my medicine. They had a waiting list and there was no way I was going to make it long enough to get the medicine. That is when the HOPE Foundation stepped in and saved my life. Momma always notices when the caregiver is around I follow him and always smile. They were there when I needed them most. The article also said that I was walking and talking. I talk in my own language, but I did say Momma for the first time here in Colorado. The walking, well...I do that with the Upsee. It is a device that helps Momma hold me upright so I can walk with her. I just didn't want anyone to get confused. Now that I have cleared that up, Momma got a very generous donation from one of our supporters on here. When she got the email this morning she started to cry. Then she saw that others were opening up their hearts to us. Thank you from the bottom of our hearts. We never would have made it here without you. You guys give us so much love and help us through some of the toughest of times. I don't think we will ever be able to thank you enough. We feel the love and prayers coming from all over the world. So God Bless everyone single one of you!!!

Tomorrow I get to meet my new physical therapist and speech therapist. Better get some rest...I am going to get a workout tomorrow! Lots of love from Colorado- Haleigh and Mr. Bear

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