I have held off writing about this for a bit for a few reasons but the main one being that it’s painful for me to relive in the retelling how I am making Ellie's life uncomfortable. Cerebral Palsy is never so in your face as when you are fighting off the negative, debilitating effects of spasticity (increased tone). Spasticity, in all of it’s glory, is the brain’s inability to stop from constantly firing neurons at Ellie's ankles muscles and telling them to flex (though it could be worse some kids are spastic or have high tone all over). I describe it in depth in this post. Ellie's brain is constantly sending signals to her ankle muscles to flex and in doing so deforming the bones of her feet and legs as she grows. Hence the Botox treatments – a stopgap measure short of a painful surgery to get her on those twisted varus feet. The Botox acts like a block in the muscles to make them unresponsive to the neurons telling them to flex. In fact they call getting this treatment a “block”. Fun business all round, no?!
Three weeks ago we got Ellie her second round of Botox. I described the procedure and all the major players in round 1 here. I can’t stress enough the pain management aspect. Those needles are not small and must go deep into the muscles to deliver up to 2 cc’s of the Botox. I can’t tell you how hard it is to watch Ellie go through this. She feels the pain even with the Versed and the Emmla cream but doesn't care and doesn't remember 30 seconds afterward. The Versed, as advertised, leaves her smiling minutes after the procedure. This is followed by
three sets of serial casts to stretch her feet into more neutral positions so that we can get her standing. I describe the casting here, here and here. Again my thanks to this man, Dr. Harry C. Webster, who is at New England Medical and is well worth seeing if any of my readers have children in need of a great orthopedic (technically he is a physiatrist). We waited six months to see him (it was well worth it) and then he expedited Ellie to the top of his list because she has the potential to walk. His goal is to get her walking and even running. He cares about the whole child and is dedicated to going many more extra miles than most people will ever go for the children he treats. I am thankful for his enthusiasm and positive thinking and for seeing and aiding Ellie's potential.Ten days after the Botox she got her fist set of casts. This time she picked blue much to the cast technician’s surprise. He kept asking me what color she wanted and I kept telling him to let her pick and asked if he had swatches or packages that were color-coded. He did have color-coded packages and this is how Ellie picked blue. Sheesh! I took her by myself so there are no pictures to share. This week she got her second set of casts and next week she will get the third. Her knees hurt her after the casting today. She has trouble sleeping in them so we are very tired.
The good news is that after the casts came off her feet were less turned in and her skin was much better than it was the last time. The big push will be to get her standing so that gravity can help her hip development (her hips are slightly efaced and I don't want that to get worse) and help her build up the muscles in her legs to be able to support herself while standing. All this standing is going to have to be balanced with tummy time though because I am watchful of her spine twisting. New School let us borrow an AWESOME tummy time wedge. It has Velcro straps that help keep her in position and from rolling off. Ellie actually likes this wedge as long as I keep her entertained – fair enough! The reason I am so concerned with tummy time is because I believe that logic that goes like this: if someone can’t hold himself or herself up on their own in sitting or standing, if you force them to be in those positions, their spine will twist in the process. Have you seen pictures of people with CP who lean over to one side - well it's because they are being managed to sit at all costs - at the cost of a straight spine and at the cost of their crushed organs that get compressed in the bent over position. So it's a fine balance that I am watching like a hawk. If Ellie is too weak to stand and her spine starts to bend, more tummy time and less standing. That is the way it is. I have to patience and go at her pace - period. The trade off of a twisted spine is not worth it. I truly believe that she will get to the point where she is strong enough to maintain a seated position and even stand and walk. When that is depends upon her. She has come such a long way from her early days when she couldn't even roll
over or hold up her head at all. The Scotson Technique has helped her the most in building up her strength by restoring her circulatory system via creating a stronger diaphram. It's slow going, all this healing of Ellie's brain, but very worth my time and patience. Don't ya think?! Look at that face! ;-) (The pic is of me and Ellie blogging last week before bed.)I swear navigating the bodily pitfalls and trenches of cerebral palsy for my sweet Ellie is like walking a razor's edge. Luckily walking on razors was well covered in my "How You Too Can Walk On Hot Coals" class so I have decent technique. Just call me Maharishi Yogi Mama.
