Elle is right, I have been horrible at posting updates so here it is in a nut shell...a huge freaking nut shell...
In December '09, Elle got a new stroller!! Or should I say Elle got "the" stroller. The Kimba Spring was delivered! It a medical stroller built to fit Elle's body and keep her properly positioned so that her hips are at the right angle and her back is in perfect alignment. It will "grow" with her and can be adjusted as needed. I fought long and hard for this. The Kimba carries a $5200 price tag and BCBS said it was to expensive. They so kindly gave e the option of a different "stroller". It looked more like a wheel chair with an IV pole attachment. NO and NO!! I wasn't doing that to Elle and quite frankly, I wasn't doing it to myself as selfish as that sounds. Elle deserves to be treated like every other child and she deserves to have her dignity. Thanks to our amazing durable medical equipment rep at BCBS and the team at Wheelchairs Plus in Jacksonville, we were able to not only get this stroller for Elle and have BCBS cover it 100%, we also got it in the '09 calendar year so we didn't have to pay the $3000 deductible on it!! THANK YOU Mary and THANK YOU Wheelchairs plus for advocating for Elle and go to bat her...we are so grateful!!
The stoller looks just like every other kids stroller and it's actually pretty high tech. We have taken it out in the neighborhood, but I have yet to bring myself to be able to take it out in public. As much as it looks like all the others, it's still different. I guess it is just another one of those adjustments you have to make when you live in "Holland".
Pictures to come :-)
Elle's Hip Brace-
If you have been following Elle's blog or know her, you know all about her hip displaysia. She was first diagnosed last year and after waiting for almost a year to have the surgery we headed off to pre op. During that time, we got unbelievable news that Elle's hip had started to correct itself and Dr. Loveless felt he could correct the rest with a hip brace. He was right. Not that we ever doubted him. Well after 6 months in the brace, Elle's hip looks great!! She has outgrown it and Mr.Bob is currently fabricating a new one for her. Elle never let the brace hold her back...that's my girl !!
Elle Turned 2 !!!!
February 16th 2010 was an amazing day. It was Elle's birthday!! It was filled with laughter, smiles and a house full of all the amazing people that Elle has in her life. There were new friends and old. For me...it was a day that a mom looks forward to . My little girl was now 2. Elle's birthday represents so much more though. For me, every birthday that we celebrate with Elle is a birthday that defies a prognosis. "...prepare for a shortened life span...probably until school age". I will never, as long as I live, forget hearing those stabbing words roll off the tongue of an insensitive, rude intern that had no business being anywhere near Elle, let alone "sharing" such information. I remember where I was, what I was wearing, the smell in the room, the fear, the numbness...all of it. But more so, I remember the joy and pure bliss I feel every time I see that little girl smile or hear her giggle. Thank you to all the people who fill her life with joy, we love you!
A Blessing by the name of Brigett Freeman
Last year we were so fortunate to have been put in contact with Dr. Brigett Freeman. She agreed to take Elle as a patient and I have been so grateful ever since. At first, I was skeptical.. but I can tell you...actually, I can SHOW you what the effect has been on Elle. Dr. Freeman's approach was to run full blood work ups on Elle, determine what parts of her body were not running efficiently and work to change that through the use of supplements. I am a big believer of what goes into the body is what comes out and feed it poorly it will function poorly. Although this was not the case with Elle. Her nutrition was excellent...fresh fish, fresh veggies, olive oil, lots of blueberries and kiwi fruit...nothing processed with the exception of her cereal bars, bread and peanut butter. With Elle's body running at an optimum level, Brigett explained that Elle would most likely be able to focus, better coordinate, understand and function at a much higher level. This is what we wanted for Elle and so we started Elle on her daily supplements. Every morning, we apply vitamin B to Elle's skin. Unfortunately, it stains her foot orange for the day. A small price to pay for the benefit. Her body doesn't process it orally so we give it topically. She also gets a dose of Glutathione and Enhansa topically.
Glutathione has multiple functions:
* It is the major endogenous antioxidant produced by the cells, participating directly in the neutralization of free radicals and reactive oxygen compounds, as well as maintaining exogenous antioxidants such as vitamins C and E in their reduced (active) forms.
* Through direct conjugation, it detoxifies many xenobiotics (foreign compounds) and carcinogens, both organic and inorganic.
* It is essential for the immune system to exert its full potential, e.g. (1) modulating antigen presentation to lymphocytes, thereby influencing cytokine production and type of response (cellular or humoral) that develops, (2) enhancing proliferation of lymphocytes thereby increasing magnitude of response, (3) enhancing killing activity of cytotoxic T cells and NK cells, and (4) regulating apoptosis, thereby maintaining control of the immune response.
* It plays a fundamental role in numerous metabolic and biochemical reactions such as DNA synthesis and repair, protein synthesis, prostaglandin synthesis, amino acid transport and enzyme activation. Thus, every system in the body can be affected by the state of the glutathione system, especially the immune system, the nervous system, the gastrointestinal system and the lungs.
Enhansa
Enhanced Absorption Curcumin
Supplement: Clinically Proven Benefits of Curcumin
Increases levels of Glutathione within the cell
Reduces levels of nearly every inflammatory cytokine found to be elevated in Autism
Improves liver detoxification
Chelates Lead and Cadmium and protects brain and body from damage caused by Mercury
Anti-Viral
Anti-Fungal
Decreases levels of oxidized (GSSG) Glutathione. Oxidized Glutathione has been found to be elevated in Autism.
Enhansa is SCD-legal, gluten-free, casein-free, soy-free, sugar-free, yeast-free, corn-free, and egg-free .
Elle has been on the supplements for about 2 months now. Prior to starting them, Elle seemed to have come to a stand still developmentally. She had not done anything new for quite some time, she continues to put everything into her mouth much like an infant does when they are learning, and the only time Elle seemed to really focus was when she was feeding herself which, by the way...she does extremely well!! I struggled everyday with the fact that where we were, where Elle was might very well be where we were going to stay as far as development. It broke my heart. We noticed that Elle appeared more alert after being on the supplements for a w couple of weeks but there were no other real changes. That all changed one day when I went to pick Elle up at daycare.
Mrs. Deborah, Elle's wonderful teacher said, "Elle was crawling today!" I didn't put much value to that because I knew my daughter wasn't crawling. I played along though..."Really...Elle...can you crawl for mommy?" At that moment, Deborah put a toy down in front of Elle about 48 inches away. I watched in amazement as Elle turned her attention to this toy and began to put arm over arm and commando crawl to the toy until she reached it !!!!!!! Through the tears, I stared at my daughter and again saw all the possibilities that were possible for this little girl. She was going to overcome the obstacles of this horrible diagnosis...and she was going to start...with crawling!!!! Brigett's approach of treat the cause (with food a.k.a the supplements) vs Dr. Hammonds (Elle's Neurologist) worthless approach of treat the symptoms (with drugs) has gotten Elle on the road to being able to function at a higher level and grateful doesn't begin to describe it !!!!!!!!!!!!!!!!
Video to come!!
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