7/22/11 Friday, we woke up to find just enough milk for coffee, and then it was a shout out, "we leave for Shriners in 15 minutes, get dressed everyone!" It is nice when every one pitches in especially when we are almost late. We arrived at 8am for our appointment. Shriners has children's hospitals around the world that help children with out charge. They also do out reach clinics and this is how they see the children on our Island that need to be followed up with consistent monitoring and care. They specialize in helping children who are burn victims and helping children get equipment for walking like leg braces, walkers, wheelchairs and they do all sorts of surgeries to help, specializing in orthopedic surgery. I include this just incase some one is reading this and does not know about Shriner's children's hospital and could benefit from them. Makena came as part of our team and she was a support to me and Jewel's advocate. The night before Makena typed up a list of things we needed to bring up, questions, and equipment needed. Well she was amazing, she stayed focused, quietly listened and used therapeutic lingo and advocated for Jewel to get the Kid Rock chair. Thank you Makena, you are such a blessing and brilliant! Both the surgeon and the P/T were very impressed by her maturity and her knowledge and recommended that she go into studying physical therapy. She thanked them stating she enjoyed helping her sister but photography was her focus. It was a very intense session as all clinics are, there is a lot to cover and little time with lots of families with patients waiting. The mood is always friendly and we always get to see a family or two that we know. Dr. Pellett checked up on Jewel's spine, shoulders, knees and hips and he was happy with her current health in these areas. He said Jewel had more of a dystonia movement, an On/Off movement which is always changing. She does not have any contractures either and we are happy for this. He recommended she do strengthening hip adductor exercises and strengthen her gluteus. He ordered a new hip adductor brace for the old one is falling apart after three years of use every night, since she sleeps in it, though it can be used for walking and sitting. They took measurements of Jewel for the new wheel chair for she has out grown the one she has had for five years. They ordered soft hand braces to open up her hands, since she holds her thumbs thus making her hands non functional. They took her AFOs to do some repairs and adjustments, and I could just cry. I am so grateful but it is hard not to have them because these uncomfortable fiberglass shoes break her tone because the shoes keep her ankles/foot in a 90 degree angle and they give her the support to be in her super stander and gait trainer. It is all about correct posture, alignment, stability to bring about mobility. During the visit the shoes caused two tiny veins in her calves to burst and bleed, thus creating a blood bruise and showing the Doctor that she needed more padding and better straps to avoid this from happening. (We put Arnica Montana gel on the bruises and gave her the homeopathic Arnica Montana sugar pills as well.) Doctor is so attentive to Jewel and they have a special rapport with each other, he is a young doctor with four little boys of his own. He is very compassionate, kind, patient and gentle, he really cares and he is good at what he does. We discussed a few things but it was such an amazing visit, where else can you go and get the worlds most excellent care from some of the best orthopedic specialists and free of charge. A million thank yous to Shriners and all the staff!!! When we finally got home Raven had made crapes for all of us to eat and enjoy with jam and honey, thank you Raven :)
Today Jewel walked in her gait trainer for 1 hour with just her socks and large sneakers on, she did real well considering she had no AFOs on. We spent time with speech and swallow homework, using blow toys and ice pops to help facilitate breath co ordination/control and lip closure. Please get the help of a swallow specialist or speech pathologist trained in swallowing to help you even if your child is still nursing. It is vitally important because it will help them eat and drink safely, breath better, nose breath, learn chin tuck posture for safety, and all of these skills are precursors for speech and speaking. If only I had a swallow specialist to help when Jewel was still nursing or even when she started eating. If the tongue has the incorrect rhythm it will make eating more dangerous and harder and the tongue will push the teeth out creating an over bite, which Jewel now has. Most cerebral palsy people die due to aspirating food or water into the lungs and die because of complications from getting phenomena and other bronchial infections due to aspirating. So get help now and avoid complications later. Jewel is taking to learning some of the relaxation techniques and use of blow toys, she can not believe she is doing well and I have to keep encouraging her and remember to stay calm my self. Calm room, calm gentle low tone voice is optimal. My goal is for her to be able to nose breath and get the suck, swallow and breath co-ordination dialed. It is never to late to improve our children's quality of life, health and joy.
I am learning that her therapy is not re-habilitation but habilitation.
Makena learnt about an organization called project walk and they help people with spinal cord injuries. For example the article spoke of this woman who dove into a pool and became a paraplegic, project walk was able to help her. It is 6 month bursts of intensive therapy. Makena e-mailed them and they want to talk with us. We shared this with our doctor from Shriners and he said that a lot of spinal cord injuries have similar tones and spasticity that cerebral palsy people have, so maybe they can help Jewel!
Jewel is still enjoying her audio books and always wants to play barbies.
Daily I am learning more about helping her become her best and just enjoying the process. I am so grateful for our family willing to help Jewel, each in their own way in their areas of interest and gifting. Each day I am learning that Jewel is not just going to recover from cerebral palsy like one does with a cold. She has cp and we will help her stay healthy and get the help she needs to be able to grow and learn and be happy. She is more than her cp. Every day I see less of the disability and more of my daughter, a whole person. It has been a long journey for me to get here. I focus less on what she can not do and more of how to help her make some gains, some baby steps forward. I am learning to dream and laugh more. I enjoy her and could not imagine life with out her or any of my daughters. Jewel is a lovely human being and she is always bringing out the best in us. I am learning to be grateful daily.
and I found this great article;
http://www.parents.com/blogs/to-the-max/2011/07/21/uncategorized/7-things-not-to-say-to-parents-of-kids-with-special-needs/
people say dumb things and they stare and it is never comfortable. I am still learning how to deal with ignorant comments though they are so few that I can count them on one hand. I used to cry when people used to stare at Jewel and now I cope a little better, sometimes I tend to get protective and aggressive. It is a tender issue. It is best to stay calm and educate the person who knows not how they can hurt with their questions.
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