Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles." 
 ~ Christopher Reeves


2011~A Year in Review

Posted by Haley's mom on January 20, 2012 at 8:30 AM

One of my New Year’s resolutions was to keep Haley’s website more current. It was probably one of my resolutions from last year as well. I was sitting down to recap the year and then the thought was to show it in pictures. I don’t know about you, but 2011 flew by. I am not sure why or if it is true what they say, the older you get the faster time flies. Last year was a blur in some places and dragged along in others.

As you can see in the video we had some major events happen in Haley’s life. The addition of Stiripentol to her medications has made a huge difference in seizure control. It is not a complete “fix”. I am not sure Dravet has a complete fix at this point. What we have noticed with Stiripentol is that Haley has less seizures, fewer seizures and more “spontaneous” language. My best example of the increase in language has been Haley actually saying where she wants to go. For her eleven years she pretty much has been loaded in the car with little information and off we go. It is not unusual for Haley not to question where she is going. She is extremely laid back in that way. Once and awhile she will ask where she is going. But this summer she actually requested, or demanded, to go someplace. We were driving to IKEA to meet up with other Dravet families while visiting my parents. From the back seat Haley proclaims, “I waaaaant too goooo too the stooorrrree”. I replied, “Haley, we are going to the store”. To which she responded, “Noooooo, I waaaant to goo to the store with the ‘red dot’”. Of course we all know that as Target! I was so excited, if I could I would have turned the car around and rewarded her, but we had people to see! But we DID stop by the “store with the red dot” later that night.

Another funny example happened right before we went on this venture. I was trying to comb out Haley’s very curly hair. Apparently I was bothering Haley by doing this and I might have hit a knot or two or four in the process. Haley looked up at me with her huge brown eyes and said in perfect “tween-speak”, “Mommy, you drive me nuts!!!” I nearly fell over in laughter! Fast forward a couple of months to Hurricane Irene. We had gone back to my parents for “safety”. The first night there Haley had the hiccups. You know the ones that are so deep seated they hurt. She had hiccupped for a good hour before bed. As I was putting her to bed I told her, “Haley you are driving me crazy”. To which she responded, “No Mommy, I don’t drive you crazy, I drive you nuts…..and you drive me nuts too!” She has a great sense of humor.

The other major event was the surgery on her feet. Haley had cadaver bones inserted in her ankles in an attempt to bring her foot into a more neutral position. Prior to the surgery her feet were so pronated (collapsed inward). The rolling of the foot inward was causing her knees to come together and her hips to be shifted back. This all together caused a “crouched” gait when walking. One of her feet was worse than the other and that is the way she came out of surgery. One foot looks “nicer” than the other. When the casts first came off, I don’t know why I thought she was going to be able to walk perfectly. Initially I was disheartened when she could barely walk at all. But then rationale kicked in. She had been non-ambulatory for the first three weeks and then in walking casts for the second three weeks. And even though she had the walking casts, she was pretty much sedentary for the entire six weeks.. So it made perfect sense she needed to relearn to walk. Fortunately a local physical therapy group had hired a pediatric PT and Haley did not have to venture far for services. We are so pleased with her new PT site and the results we are seeing in Haley.

A funny story that happened during the non-ambulatory phase…I was attending a Zumba class with some regularity last Spring and Summer. One day another mom came up to me after class to ask had I changed my fitness program, she thought I looked more muscular in my upper body. I thought and said, “No, I still come to the Y to lift weights and do cardio, but no, I have not changed anything.” It was not until I was walking to my car that it dawned on me, that all the lifting and carrying of Haley’s 65 lbs. plus casts had an impact on me!

 I think one thing I can say our family has learned this year is to laugh. In years past things have been tense to say the least in our house. The stress of a disabled child coupled with twins and our own business made things just a little crazy. For reasons, that I can’t exactly explain there is a lightness in our household. It could be that the twins are older and less needy or that Haley’s seizures are better controlled. Perhaps it is because we have a wonderful caregiver for Haley right now. We would be lost without Caroline. We love having someone work with Haley that can assimilate into our crazy family. Or we may attribute to the fact that after 10 years of Dravet we have settled into the diagnosis and the acceptance that Haley will always be with us. Whatever the reason, we do see the blessings that this horrible condition has brought to us. I think we are able to do this because of our faith in God and the belief that there is a higher purpose for Haley’s condition.


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