While waiting for Mr. Bob, in Orthopedics @ Nemours, during one of Elle's visits, I passed the time by reading all the heart felt notes that had been written by the many children Mr. Bob had helped along their journey. The wall was filled and I mean filled with colorful drawings. The children had drawn pictures of their families, pets, the ocean, a sunset, and most touching...many had drawn pictures of themselves standing and even walking. The comments reached from the pages..."Dear Mr. Bob, thank you for making my braces so I could walk! I love you". "Mr. Bob, I love walking", "Mr. Bob, I can run, xoxoxo". I stood there, in tears, so moved by these raw drawing that carried the most amazing messages. To these children, Mr. Bob was GOD...HE was why they were able to walk, stand and move like other children. For them, he made their legs work and they were so thankful !!! As I continued down the wall I came to a framed poem...I began to read...
Heaven's Very Special Children
A meeting was held quite from earth
"It's time again for another birth."
Said the Angels to the Lord above-
"This child will need much love."
Their progress may seem very slow,
Accomplishments they may not show,
And they'll require extra care-
From the folks they meet down there-
They may not run, or laugh, or play,
Their thoughts may seem quite far away,
In many ways they won't adapt
And they'll be known as handicapped.
"So let's be careful where they are sent
We want their lives to be content.
Please, Lord find the parents who
Will do a special job for you."
"They will realize right away
The leading roll their asked to play.
But with this child sent from above-
Come stronger faith and richer love."
And soon they'll know the privileged given
In caring for this gift from Heaven.
Their precious charge so meek and mild
Is Heaven's Very Special Child.
As I stood there sobbing uncontrollably, Mr. Bob came into the room. I'm sure this wasn't this first time he had walked in on a parent after they had read this. He grabbed a handful of tissues, gave me a huge hug and removed the print from the wall. "I'll be right back, Lori" He returned with a copy of the poem for me. "Here, Lori...I want you to have this. It came with the office when I got here and I want you to have it too." Now I am sure I am not the only person he has done that for...or maybe I was, but regardless this is one of the reason we love Mr. Bob so much. It is with this same level of kindness and caring that he handles Elle. Talk about rewarding jobs....I want Mr. Bob's job!!!
Sunday, June 13, 2010
Saturday, June 12, 2010
A reminder
Some of my friends and family that are so kind as to follow this blog may wonder why I include so many medical details at times. It does seem at bit much. Please remember that I not only keep this blog to share Elle's life with all of you, but I keep it for the parent who was just told that their child has Lissencephally, or Cataracts, or Hip displaysia...it's also for all the families that are thrown a curve ball like we were, for the families that don't know what end is up and they turn to the internet and search for other families that have gone through or are going through this. I did it...I searched endlessly for other families that had children with this horrible brain disorder and I found them !!! I found friends, I found hope, I found resources, I found answers, and I found a way to possibly help others who may now be in that same position. This is why I share as much as I do. If another family can see pictures of Elle and see the things that she CAN do, my hope it that they can focus on what their child CAN do vs. what they can not. If I can provide one Dr's name that can change the life for a child then this blog has served it's purpose. If a picture of Elle can make another family smile while they anticipate their own child being able to smile one day, this blog has served it purpose. If this blog can give hope to others that their child CAN do more...it's endless really.
Mastoid Who??
Those were my thoughts exactly on March 23th as I stood in front of Elle's pediatrician. "What the hell is Mastoiditis?" I asked. "Look, is this something your office can handle or do I need to get her to the ER? If so tell me now so I can get her there!" I already knew the answer...it was "She needs to go to the ER now, I'll call and let them know your on the way." My other thoughts were "thanks for making us wait for a freaking hour with a 103* fever. We REALLY need a new pediatrician, but that's another story for another time. Andy met us and we all headed down to Wolfson Children's Hospital.
Earlier in the day I picked Elle up from a nap and immediately noticed that her right ear was sticking out severely. It looked like Alfred E. Neuman from MAD Magazine! I stood staring at it for a moment, puzzled. Had it always been like this and I was just now noticing it? Was it because her hair was pushed back? I can't believe I had to question it. Anyone that knows me will tell you that I know every freckle, crevice and mark on that babies body. When I touched it I realized something was very wrong. Elle started screaming. It was all coming together. For the past 2 days she had been crying hysterically off and on. Her ear hurt her so bad that anytime she touched it or rubbed it against something she would scream. I felt horrible!
We arrived at the ER at 6pm, waited until 8pm to be called into a room and by 9 pm were still waiting to be seen. That all changed when Andy informed the staff in the ER that Elle was 1 hour past due receiving her seizure medication. Needless to say...Elle was now being seen. After hooking her up to IV antibiotics, a CT scan was ordered. Finally at midnight...Elle went for the scan. The confirmation came back, Elle had developed Mastoiditis. When I asked how someone gets this I was told.."you have to be very unlucky." Wonderful!! By 2 am, they had moved Elle into a private room.
Mastoiditis is an infection of mastoid process, the portion of the temporal bone of the skull that is behind the ear which contains open, air-containing spaces. It is usually caused by untreated acute otitis media (middle ear infection) and used to be a leading cause of child mortality. With the development of antibiotics, however, mastoiditis has become quite rare in developed countries. It is treated with medications and/or surgery. If untreated, the infection can spread to surrounding structures, including the brain, causing serious complications.
They admitted her and immediately started her on IV antibiotics. After 4 days, they did another MRI. As Elle's luck, or lack there of, would have it, she developed an abscess that now needed surgery. When they went in to drain it, they found that the mastoid bone was actually infected resulting in having to scrape part of the bone clean and removing a small portion of it. After a total of 8 days Elle came home. But not without incident. One of the nursing assistants was feeding Elle. She claims that she turned to get a spoon and in that instant, Elle fell out of the hospital crib, 3 feet, and landed on her head on the floor. Thank GOD, she is OK. She had put the side rails down all the way which should never happen unless Dr.s or Medics are working on that child. This was not the case. End of subject- I can't even talk about it.
Here are a few pictures of "Trouble" as Elle is know as on the 4th floor at Wolfson Childrens Hospital. She was given this name by Nurse Karen during her LAST visit and lived up to it again. Here's her rap sheet-
Elle continuously pulls off all leads and keeps nurses running day and night
Elle continuously pulls of pulse sock and keeps nurses running day and night
Nurse finally disconnects Elle to give her beeper a break!
Elle again pulls off all leads and this time, hides them in her diaper
Elle pulls of her 1st IV and hides it in her crib to use as leverage to escape
Elle pulls out the 2nd and 3rd IV's with the hopes of being released for Bad Behavior!
Elle is officially known as "Trouble"
After pulling out IV #4, Nurse Karen, at the request of mommy, splints both arms.
Elle gets PISSED!
Elle somehow unwraps the tape securing the splint and takes it off.
Nurse Karen arrives with knee socks and LOTS of tape!!!
Little did we know...Elle was just getting started!!
Here are a few pictures of our "perfect patient".
Earlier in the day I picked Elle up from a nap and immediately noticed that her right ear was sticking out severely. It looked like Alfred E. Neuman from MAD Magazine! I stood staring at it for a moment, puzzled. Had it always been like this and I was just now noticing it? Was it because her hair was pushed back? I can't believe I had to question it. Anyone that knows me will tell you that I know every freckle, crevice and mark on that babies body. When I touched it I realized something was very wrong. Elle started screaming. It was all coming together. For the past 2 days she had been crying hysterically off and on. Her ear hurt her so bad that anytime she touched it or rubbed it against something she would scream. I felt horrible!
We arrived at the ER at 6pm, waited until 8pm to be called into a room and by 9 pm were still waiting to be seen. That all changed when Andy informed the staff in the ER that Elle was 1 hour past due receiving her seizure medication. Needless to say...Elle was now being seen. After hooking her up to IV antibiotics, a CT scan was ordered. Finally at midnight...Elle went for the scan. The confirmation came back, Elle had developed Mastoiditis. When I asked how someone gets this I was told.."you have to be very unlucky." Wonderful!! By 2 am, they had moved Elle into a private room.
Mastoiditis is an infection of mastoid process, the portion of the temporal bone of the skull that is behind the ear which contains open, air-containing spaces. It is usually caused by untreated acute otitis media (middle ear infection) and used to be a leading cause of child mortality. With the development of antibiotics, however, mastoiditis has become quite rare in developed countries. It is treated with medications and/or surgery. If untreated, the infection can spread to surrounding structures, including the brain, causing serious complications.
They admitted her and immediately started her on IV antibiotics. After 4 days, they did another MRI. As Elle's luck, or lack there of, would have it, she developed an abscess that now needed surgery. When they went in to drain it, they found that the mastoid bone was actually infected resulting in having to scrape part of the bone clean and removing a small portion of it. After a total of 8 days Elle came home. But not without incident. One of the nursing assistants was feeding Elle. She claims that she turned to get a spoon and in that instant, Elle fell out of the hospital crib, 3 feet, and landed on her head on the floor. Thank GOD, she is OK. She had put the side rails down all the way which should never happen unless Dr.s or Medics are working on that child. This was not the case. End of subject- I can't even talk about it.
Here are a few pictures of "Trouble" as Elle is know as on the 4th floor at Wolfson Childrens Hospital. She was given this name by Nurse Karen during her LAST visit and lived up to it again. Here's her rap sheet-
Elle continuously pulls off all leads and keeps nurses running day and night
Elle continuously pulls of pulse sock and keeps nurses running day and night
Nurse finally disconnects Elle to give her beeper a break!
Elle again pulls off all leads and this time, hides them in her diaper
Elle pulls of her 1st IV and hides it in her crib to use as leverage to escape
Elle pulls out the 2nd and 3rd IV's with the hopes of being released for Bad Behavior!
Elle is officially known as "Trouble"
After pulling out IV #4, Nurse Karen, at the request of mommy, splints both arms.
Elle gets PISSED!
Elle somehow unwraps the tape securing the splint and takes it off.
Nurse Karen arrives with knee socks and LOTS of tape!!!
Little did we know...Elle was just getting started!!
Here are a few pictures of our "perfect patient".
Friday, June 11, 2010
The last 4 Months...by Elle Hariton
The last 4 months have been so busy that my mom has not been keeping up with my blog. We had a conversation and I asked her if she could recall everything that has happened with me in the past 4 months. She said that she could recall "most" of it. I told her that wasn't good enough and she better start keeping up or I would have to find a new editor!! I wouldn't, but I'm 2 and I'm bossy!! I think she got the hint!! -elle
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!!
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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