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Thursday, November 02, 2006

Casting for Hope: Part 2

You can read part one of this saga by clicking here.

Today Ellie had her purple casts removed. I gave her Motrin before we left the house because I knew that Dr. Webster would be recasting her feet in an even greater stretch in the journey to the neutral zone where standing can occur. What I had not planned on is the pain Ellie experienced during this procedure. First off the “saw”, which does not really cut but vibrates is REALLY LOUD. It scared the bejasus out of her. She was literally screaming. And for those of you who know Ellie, she is NOT a screamer. She has only screamed once before when Dr. S sprained her Achilles tendons while examining her. That is the subject of future RANT, I mean post. The other thing that you have to consider when dealing with someone who has a brain injury is that you can’t be sure what something will sound like to them. I was fortunate to meet a 25-year-old man who suffered a traumatic brain injury at birth and has CP. He told me that when he was a toddler his mother would be whispering to him but to him it sounded like she was yelling. That story has stuck with me. I make it a point not to take for granted, because I know Ellie can hear, exactly what or how she hears. We have to do this all again next week on her birthday so I am going to bring earplugs for Ellie.

The first cast, other than the loud saw, came off ok. We gave her a break in between to calm down. She was hyperventilating and the tears were flowing still. Seeing tears on Ellie’s perfect rosebud cheeks and hearing her cry and scream is quite simply - horrible. She is such an easygoing kid that she has never once had one of those totally mortify you in public toddler tantrums. It’s just not her. When she screams and cries with real tears I know something is really wrong.

The second cast coming off was even worse because she was even more upset at the saw and her foot had some sore pressure points that really hurt. There was no skin breakdown but the skin over the bone that protruded out the farthest on her foot was a cadmium red color and looked really painful.

Overall, this was a much tougher experience than I had anticipated. Thank god Bonnie went with us and could help hold Ellie down while they were de-casting her. Once the casts were off, it was much easier to distract her with books and her phone to get the new ones on. Ellie picked red this time and they are quite cheery.

The amazing thing is the change in her feet. The right one especially was naturally “sitting” in a much less turned in position. The left one showed significant improvement as well.

After a good nap she was still a bit weepy and grouchy but when Dave and I lay down with her to help her fall asleep tonight, she was pulling her leg up smiling showing them to Dave. It was really cute. She even seems a little stronger in that they are not wearing her out at much. When she first got them she was just exhausted from the weight of them. Every time she wanted to move she had to lug this extra weight around. She was pale for a week in doing so. But tonight she was flinging her legs around like a champ.

It was definitely one of those experiences as a parent where I had to surrender and know that I was doing right by Ellie and her future even though in the moment it really sucked. She is a warrior princess.

Halloween in all its glory

This year Halloween was especially fun. Dave and I got to go to a costume party the Saturday night before where we looked like this. Alert Fug Reporters Heather and Jessica! We were supposed to be 70’s hep cats. But I am not sure that neon velveteen polyester was available in the 70’s. I’m waffling back and forth but I think I might like Dave better as a brunette, something about those chops. Ooolala! Going to a party (thanks to Kelly who was able to come and look after Ellie) made me nostalgic for my LA days. It was excellent to find myself among adults, albeit, adults dressed as dreadlock wearing pimps, toga toting Caligula’s, pirates in breeches and pro wrestlers to name a few. It was great to get out and about and see through a glass darkly a life that was mine when I in LA. It was good to remember more carefree times.

But what made this year especially fun was that Ellie was way into it. Maybe it was because it was a very warm night and she napped for three hours. Although, at the first sight marauding Jedi’s and X-Men she insisted on being carried from house to house. From Dada’s strong arms she had a great time looking at everyone she saw. We figured out that if I held a candy in each hand she would pick one. There was a night bird in a tree making a thwack, thwack sound that she also thought was hilarious. She also made it through the entire street and round the corner to the little side street. In past years after 3 houses the excitement of it all got the better of her and it was time to go home.

Our little warrior princess is certainly much stronger and looking beyond herself at the outside world these days, which is one more blessed developmental milestone. In sum, it was the best Halloween ever.