Looks like this was actually my last entry in 2010...I just never posted it. Fortunately we are way past these bedtime shennanigans....only to be replaced by new ones...trust me !!
YEP...She's 2. There is no denying that one. I am always thrilled to see the a-typical things that Elle does even when it results in her latest and greatest...the tantrum ! Not really a fan. Elle has never met a stranger and she never had separation anxiety so this is a new one on me. She has the timing down perfectly. At 8 p.m., Elle goes to bed. She gets a bottle, kisses and off she goes. Recently she has decided to change things up a bit. 8p.m. comes, she takes her meds, and then the struggle begins. I give her the bottle and she swats it away. I try again and she again swats my hands away. I can hear her little voice say (if she could) "NO...I'm not drinkin' that, I know what your tryin' to do, your trying to make me go to sleep and I dont wanna!!" I hate to see her go to bed upset so I try picking her up, walking around and singing to her before I again attempt to put her down for the night. She's a little smarter than me sometimes and isn't easily fooled. This usually ends in full out tantrum, Elle style. She screams for about 5 minutes until she gets fully worn out, gives in, grabs the bottle and in a few minutes....drifts off to sleep. I guess it's rough being a toddler.
Saturday, October 2, 2010
Tuesday, September 21, 2010
Cleared for Take Off !
It's great to have friends in high places and today was a beautiful example of that. It's not exactly what you're thinking though...
We arrived at Craig Air Field shortly after 1:00 p.m. After conducting a preflight inspection, which I found extremely interesting to watch,( I had a hundred and one questions but knew to contain myself) we boarded a Cessna 172...117 (I think...may need a correction to that) and prepped for take off !
(( this picture was stolen without permission from it's owner :-) ))
I had been looking forward to this moment all week. I prayed daily that we would have good weather and mother nature sure delivered! I also prayed that I didn't get queasy up there...this would NOT have been fun for either one of us. Just to be on the safe side, I skipped dinner the night before and had 2 Dramamine for breakfast.
It had been quite some time since I had been in a small plane...probably 12, maybe 13 years. It wasn't the flying that I was concerned with but rather the possibility that motion sickness might kick in at anytime. Just to be safe, I packed a baggie...O.K...I packed 2 in hopes that they would never be used. If I didn't need them, he would never know I had them and If I did need them...he would be thankful I had them. It was a win win situation :-) Fortunately, I never needed them.
I was fine and dandy during my passenger briefing until I heard the words..."In case we have an emergency..." STOP!! HOLD ON!!!...REWIND....!!! WHAT???? EMERGENCY??? He showed me a checklist and explained that in the event of an emergency he was depending on me to read from this little bitty card that was a total blur at the moment. I could barely see it now...what the hell was it going to look like should I need it for real?? For a brief moment, I felt like I was radiating from within. I tried not to let this come through my facial expression but I do believe I failed miserably. Seeing as an in-flight emergency could be a possibility, I paid close attention and squeezed in another prayer :-) The truth be told, on any given day I would trust him with my life...and today wasn't any different. I decided not to let the thought of an actual emergency tarnish the trip.
We taxied down the runway as I checked the latch on my door about 5 times to be sure it was fully engaged !! All of a sudden it felt like we caught a cloud and it lifted us up...up...up...
I am always nervous during take off but for some reason today, I wasn't. I was calm, settled and awaiting the view at 3500 ft. I was not disappointed. We flew out over the coast and headed towards St. Augustine. It was simply beautiful. We then headed towards downtown. The long, boring roads that you travel everyday are so much more interesting from up above. They curve and loop and have such character as they seem to dance through the city.
After a great flight, we landed safely back at Craig Airport and went about our day.
So instead, maybe I should say that it's great to have a very special friend that has access to high places and was so generous and willing to share this fantastic experience with me.
What a great day !!
We arrived at Craig Air Field shortly after 1:00 p.m. After conducting a preflight inspection, which I found extremely interesting to watch,( I had a hundred and one questions but knew to contain myself) we boarded a Cessna 172...117 (I think...may need a correction to that) and prepped for take off !
(( this picture was stolen without permission from it's owner :-) ))
I had been looking forward to this moment all week. I prayed daily that we would have good weather and mother nature sure delivered! I also prayed that I didn't get queasy up there...this would NOT have been fun for either one of us. Just to be on the safe side, I skipped dinner the night before and had 2 Dramamine for breakfast.
It had been quite some time since I had been in a small plane...probably 12, maybe 13 years. It wasn't the flying that I was concerned with but rather the possibility that motion sickness might kick in at anytime. Just to be safe, I packed a baggie...O.K...I packed 2 in hopes that they would never be used. If I didn't need them, he would never know I had them and If I did need them...he would be thankful I had them. It was a win win situation :-) Fortunately, I never needed them.
I was fine and dandy during my passenger briefing until I heard the words..."In case we have an emergency..." STOP!! HOLD ON!!!...REWIND....!!! WHAT???? EMERGENCY??? He showed me a checklist and explained that in the event of an emergency he was depending on me to read from this little bitty card that was a total blur at the moment. I could barely see it now...what the hell was it going to look like should I need it for real?? For a brief moment, I felt like I was radiating from within. I tried not to let this come through my facial expression but I do believe I failed miserably. Seeing as an in-flight emergency could be a possibility, I paid close attention and squeezed in another prayer :-) The truth be told, on any given day I would trust him with my life...and today wasn't any different. I decided not to let the thought of an actual emergency tarnish the trip.
We taxied down the runway as I checked the latch on my door about 5 times to be sure it was fully engaged !! All of a sudden it felt like we caught a cloud and it lifted us up...up...up...
I am always nervous during take off but for some reason today, I wasn't. I was calm, settled and awaiting the view at 3500 ft. I was not disappointed. We flew out over the coast and headed towards St. Augustine. It was simply beautiful. We then headed towards downtown. The long, boring roads that you travel everyday are so much more interesting from up above. They curve and loop and have such character as they seem to dance through the city.
After a great flight, we landed safely back at Craig Airport and went about our day.
So instead, maybe I should say that it's great to have a very special friend that has access to high places and was so generous and willing to share this fantastic experience with me.
What a great day !!
Monday, September 6, 2010
Stumped !
I recently had someone very close to me ask, respectfully..."How do you prepare people for Elle?" I stood there....stumped. That was a very good question that I simply didn't have an answer to. My reply was..."I'll get back to you." All I know is that there is usually someone there to be the bridge. Beyond that, I never gave it any thought.
I have been pondering it a lot since. The truth is I really have not brought anyone new into our circle since Elle's diagnosis. Has that been intentional, quite possible. Come to think of it, The Addy's are the only people that we got to know after Elle's diagnosis. On any given day, you can find a picture of Elle on the picture board in their kitchen. It's filled with photos of those that they love most...enough said :-)
The Addy's are the parents of one of my absolute best girl friends. I had personally been to their home before on my own. During this time, we spoke about Elle in detail. They initiated the conversation and I am always willing to answer whatever questions people have about Elle. Mind you that is providing these questions come from a good place.
When I look back to that initial meeting with Mason and Donna, I was so nervous. We had been invited for Easter Dinner. Now I personally, can hold my own anywhere. But things were different this time...it was about Elle and acceptance and fitting in and appearing normal and not disrupting anything or anyone and I could go on and on and on. Would she cry, would she scream, would she eat calmly or was this going to be one of those days when her inner-toddler came out. What if she dropped food on the floor or banged her cup to loudly? What if she jumped out of control in the jumper while everyone was watching football? If you are reading this you're probably thinking ...That's what toddlers do...they drop food, they cry, they get feisty. True, but when an a-typical child does these things no one really thinks about it beyond that. But when a disabled child does it...their disabilities are magnified!!! And THAT is what I worry about. That is the root of the nervous feeling. As much as I accept my daughter and I say that I really don't worry about what others think, I do in a way. I don't worry per say. I just want her to be accepted and treated as any other child. I want people that meet her to talk to her and acknowledge her as they would any other child. I don't want her to be fussed over because someone feels obligated or they feel sorry for her. I sometimes think people simply don't know what to do when they meet a child with disabilities. For goodness sake, she's a little human being. She can see, she can hear, she knows when someone is paying attention to her. Now, her response to these interactions my not be typical and maybe that's what throws people. Who knows.
Fortunately, I can reflect on my life before Elle and I can understand how sometimes people may feel uncomfortable with things that are not their norm. I know not everyone is going to be able to have this reaction to Elle or any other disabled child for that matter. I understand that and I respect it. I guess it's just funny how your perspective immediately changes when you change the shoes you walk in.
Getting back on track... I guess that's the answer to the question. Preparing people to meet Elle works best when the conversation about Elle comes up before they meet her. When I can be around them first and feel comfortable with them...when I have someone that is close to me to be that bridge. It allows me the ability to break the ice, if you will. I had known Shannon for years and had visited with her parents a few times before they actually met Elle. So it didn't feel quite so overwhelming when we arrived for Easter dinner with Elle. Mason and Donna's response to Elle also had a lot to do with everyone being comfortable. And for that, i will always be grateful.
I have been pondering it a lot since. The truth is I really have not brought anyone new into our circle since Elle's diagnosis. Has that been intentional, quite possible. Come to think of it, The Addy's are the only people that we got to know after Elle's diagnosis. On any given day, you can find a picture of Elle on the picture board in their kitchen. It's filled with photos of those that they love most...enough said :-)
The Addy's are the parents of one of my absolute best girl friends. I had personally been to their home before on my own. During this time, we spoke about Elle in detail. They initiated the conversation and I am always willing to answer whatever questions people have about Elle. Mind you that is providing these questions come from a good place.
When I look back to that initial meeting with Mason and Donna, I was so nervous. We had been invited for Easter Dinner. Now I personally, can hold my own anywhere. But things were different this time...it was about Elle and acceptance and fitting in and appearing normal and not disrupting anything or anyone and I could go on and on and on. Would she cry, would she scream, would she eat calmly or was this going to be one of those days when her inner-toddler came out. What if she dropped food on the floor or banged her cup to loudly? What if she jumped out of control in the jumper while everyone was watching football? If you are reading this you're probably thinking ...That's what toddlers do...they drop food, they cry, they get feisty. True, but when an a-typical child does these things no one really thinks about it beyond that. But when a disabled child does it...their disabilities are magnified!!! And THAT is what I worry about. That is the root of the nervous feeling. As much as I accept my daughter and I say that I really don't worry about what others think, I do in a way. I don't worry per say. I just want her to be accepted and treated as any other child. I want people that meet her to talk to her and acknowledge her as they would any other child. I don't want her to be fussed over because someone feels obligated or they feel sorry for her. I sometimes think people simply don't know what to do when they meet a child with disabilities. For goodness sake, she's a little human being. She can see, she can hear, she knows when someone is paying attention to her. Now, her response to these interactions my not be typical and maybe that's what throws people. Who knows.
Fortunately, I can reflect on my life before Elle and I can understand how sometimes people may feel uncomfortable with things that are not their norm. I know not everyone is going to be able to have this reaction to Elle or any other disabled child for that matter. I understand that and I respect it. I guess it's just funny how your perspective immediately changes when you change the shoes you walk in.
Getting back on track... I guess that's the answer to the question. Preparing people to meet Elle works best when the conversation about Elle comes up before they meet her. When I can be around them first and feel comfortable with them...when I have someone that is close to me to be that bridge. It allows me the ability to break the ice, if you will. I had known Shannon for years and had visited with her parents a few times before they actually met Elle. So it didn't feel quite so overwhelming when we arrived for Easter dinner with Elle. Mason and Donna's response to Elle also had a lot to do with everyone being comfortable. And for that, i will always be grateful.
Monday, July 12, 2010
Move over Tinkerbell...Here comes Tinker-dini !!
I had no idea the surprise I was in for when I arrived to pick Elle up from daycare a couple of weeks ago. As soon as I walked in, one of her teachers greeted me by saying "Elle had a great day today!". Curious, I asked what made it so great. I wasn't ready for what came next. She told me that Elle got to enjoy some water play, spent some time in the gait trainer and then played dress up !! I asked, "Elle played dress up? You dressed her up too...just like the other kids?" "We did" she said as she opened her cell phone and showed me the pictures they took. I reached for the phone and could barley see the picture through the tears coming from my eyes. I couldn't believe what I was seeing. It was Elle, dressed up in a Disney costume. They dressed her up like Tinkerbell!! They even did her hair!! I stood there staring at the picture and all I could see was my little girl, my little girl who got to be just like every other little girl today and play dress up. This was something else I didn't think I would ever do with Elle and here it was...her first day playing dress up!! I was so thankful and gave her teacher a huge hug. I proceeded to pick Elle up and take her home. Needless to say, I was just beaming all night. Later that night I shared the photo with my friend Kate, who LOVES Elle. She said the photo also brought tears to her eyes and followed with a "It's Tinkerdini!" Hence....Elle's newest nickname. I think it will stick :-) !!
Sunday, June 13, 2010
Heaven's Very Special Children
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!!!
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!!!
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!!
Thursday, February 18, 2010
My First 5K !!!
Here it is February and I just realized that I completely forgot to post one of the most exciting things that I have done in a long time!!! I decided, on my own, that I wanted to run the Gate River Run in 2010. It's one of, if not the largest, 15K's in the US. I started training and at the end of 8 weeks, my training plan...(thank you Andy & Hal Higdon) said I would be ready for a 5K. Well, what better way to test the body out than to run one! So I did! I signed up for the Gator Bowl 5K to benefit Wolfson Children's Hospital here in Jacksonville. Yes, I even bought new running shorts for the event and then recalled hearing "nothing new on race day", so I wore my trusted, comfie ones that I had been training in. My luck something would have been rubbing someplace that didn't need rubbing and I would have been most uncomfortable.
Anyway..race day arrived and I was missing one crucial item...my running bra!!! OMG !!! I just wore it 2 days prior and now, it was NO WHERE to be found. If I had a chest like a 12 year old boy, this wouldn't be a concern. But I don't, so it was. After frantically ripping through every laundry basket, drawer and bed like a baby bear I finally had to give up!! The girls were just going to have to deal. I was scared. I finished getting dressed and re-pinned my bib, #303, to the FRONT of my shirt. I had originally pinned it to the back...such a rookie! With a fully loaded ipod I took off for downtown.
The race started in front of the Jacksonville Landing and ended in front of the CSX building. It was chilly out and I was freezing as I walked to the start to pick up my timing chip. HOW COOL!! I was getting my very own timing chip. I was like a kid in a candy store!! After getting my chip securely attached and I mean securely, (this thing was the only proof I had that I finished the race. We were connected for the next 3 miles!) I proceeded to the starting area.
The gun went off and so did I, but not without again apologizing to the girls for the stress I was about to put them through! I was feeling pretty good for the first mile. No huffing or puffing. I ran my own race for the first mile. I went with what was comfortable. The first mile marker had a timing clock. I ran a 12 minute mile. OK, I was happy with that. I had no goal for this race other than to finish and NOT with the pace car on my heels!! I really wanted to see how my body was going to preform after 8 weeks of training and did I train well enough. The second mile went well. I found a couple of girls in front of me to pace off of. I made sure they were within a certain distance and it really helped. By the last mile, I was ready for this race to be done. I wasn't dying...I was still OK. But I was getting tired. Then I started to think about why I was running. I was running for 2 reasons today. I was running for me. I set a goal, I trained and now I was doing it and I didn't give up. And I actually started to enjoy the running. It had become almost therapeutic. I was also running for Elle. Because she couldn't. I had a conversation with her in my head. I told her I was going to run this race and she said to me..."mommy, are you gonna run for me?" And I replied..."yes, baby...mommy is going to run for you." At that moment, the tears welled up and the energy kicked in. I had no right to take walk breaks at that point. I had the ability to run and that's what I was going to do. I had to just push through the tired at that point. I thought about everything that little girl had gone through in the past 2 years and today, she was my inspiration!! I ran through the last pack of spectators that were lining the road. Strangers were throwing high fives and I was taking them !! It was awesome. "Oh my goodness...where the hell is that CSX building??" All of a sudden, I turned a corner, looked up and saw the CSX building!! I immediately looked down to the left and saw the finish line and the time clock!! "OMG,I can finish in under 40 minutes"!! I literally ripped the earphones out of my ears and started running like I had never run before...my foot hit the pad, the timing chip went off and I jumped on the pad like a kid jumps in puddles! I DID IT!! I FINISHED!! I DID IT!! I must have looked like the Cheshire Cat from Alice in Wonderland. I was smiling so big! I was so proud of ME! Finishing time was 40:34. Not great, but keeping in mind that the only goal this time was to finish :-)
I walked around for a bit, got my legs back, grabbed a slice of cold pizza & a water and headed back to the car. Today was a GREAT day!
Needless to say, I wore the race t-shirt for the next 3 days :-) I also found my running bra 3 days later.
A side note...she who trains solely on treadmill is in for big awakening when feet hit pavement! O'well...I'll know better next time.
Anyway..race day arrived and I was missing one crucial item...my running bra!!! OMG !!! I just wore it 2 days prior and now, it was NO WHERE to be found. If I had a chest like a 12 year old boy, this wouldn't be a concern. But I don't, so it was. After frantically ripping through every laundry basket, drawer and bed like a baby bear I finally had to give up!! The girls were just going to have to deal. I was scared. I finished getting dressed and re-pinned my bib, #303, to the FRONT of my shirt. I had originally pinned it to the back...such a rookie! With a fully loaded ipod I took off for downtown.
The race started in front of the Jacksonville Landing and ended in front of the CSX building. It was chilly out and I was freezing as I walked to the start to pick up my timing chip. HOW COOL!! I was getting my very own timing chip. I was like a kid in a candy store!! After getting my chip securely attached and I mean securely, (this thing was the only proof I had that I finished the race. We were connected for the next 3 miles!) I proceeded to the starting area.
The gun went off and so did I, but not without again apologizing to the girls for the stress I was about to put them through! I was feeling pretty good for the first mile. No huffing or puffing. I ran my own race for the first mile. I went with what was comfortable. The first mile marker had a timing clock. I ran a 12 minute mile. OK, I was happy with that. I had no goal for this race other than to finish and NOT with the pace car on my heels!! I really wanted to see how my body was going to preform after 8 weeks of training and did I train well enough. The second mile went well. I found a couple of girls in front of me to pace off of. I made sure they were within a certain distance and it really helped. By the last mile, I was ready for this race to be done. I wasn't dying...I was still OK. But I was getting tired. Then I started to think about why I was running. I was running for 2 reasons today. I was running for me. I set a goal, I trained and now I was doing it and I didn't give up. And I actually started to enjoy the running. It had become almost therapeutic. I was also running for Elle. Because she couldn't. I had a conversation with her in my head. I told her I was going to run this race and she said to me..."mommy, are you gonna run for me?" And I replied..."yes, baby...mommy is going to run for you." At that moment, the tears welled up and the energy kicked in. I had no right to take walk breaks at that point. I had the ability to run and that's what I was going to do. I had to just push through the tired at that point. I thought about everything that little girl had gone through in the past 2 years and today, she was my inspiration!! I ran through the last pack of spectators that were lining the road. Strangers were throwing high fives and I was taking them !! It was awesome. "Oh my goodness...where the hell is that CSX building??" All of a sudden, I turned a corner, looked up and saw the CSX building!! I immediately looked down to the left and saw the finish line and the time clock!! "OMG,I can finish in under 40 minutes"!! I literally ripped the earphones out of my ears and started running like I had never run before...my foot hit the pad, the timing chip went off and I jumped on the pad like a kid jumps in puddles! I DID IT!! I FINISHED!! I DID IT!! I must have looked like the Cheshire Cat from Alice in Wonderland. I was smiling so big! I was so proud of ME! Finishing time was 40:34. Not great, but keeping in mind that the only goal this time was to finish :-)
I walked around for a bit, got my legs back, grabbed a slice of cold pizza & a water and headed back to the car. Today was a GREAT day!
Needless to say, I wore the race t-shirt for the next 3 days :-) I also found my running bra 3 days later.
A side note...she who trains solely on treadmill is in for big awakening when feet hit pavement! O'well...I'll know better next time.
Wednesday, February 3, 2010
Elle received a special gift...a new bath chair!
I can't begin to explain how grateful we are for this wonderful gift! Up until a couple of days ago, I was still bathing Elle in her baby bath tub. It was a task that should be fun for her and instead, it was a rushed event and one in which her safety was always on my mind. Elle will be 2 in a couple of weeks and is clearly to big for her current tub. The process of bathing her went like this...Put her baby tub into the kitchen sink, fill it water and bubbles, have a cup near by to rinse her hair, line the counter top with a thick towel and then layer on top of that her bath towel. Go get Elle and slip her into the bath. Wash her hair one handed while holding her shoulder with my other hand to ensure she didn't fall over and hit her head on the granite counter edge around the sink. Keep in mind that Elle is unable to sit unassisted. As a result, most of the time is spent lifting Elle up from the position she would slip down into. Then after draining the tub, I would have to lift a wet, slippery and squirmy baby out of the tub and onto the counter top that she is to long for, limbs hanging over the edges, dry her the best I could and whisk her off to her crib where we could safely finish drying her. It doesn't really sound to bad, but if you have ever had to lay a wet 2 year old that squirms all over the place on a surface that is smaller than them...you might be able to understand.
I knew Elle needed a new bath chair, but which one and the enormous expense had me delayed along with the reality that our daughter was now in need of another piece of "medical equipment". Not always the easiest the to face.
Enter Mrs. Jenna! Elle's Occupational therapist. A few weeks ago she asked me if Elle was still in need of a new bathing chair. "Yes", I replied. "I just don't even know where to start with them". Jenna proceeded to tell me that she knew of one that was possibly available and she thought of Elle. She went on to tell me about a wonderful family that was generously donating their son's medical equipment. I was puzzled at first as to why and then my heart sank and tears filled my eyes. Their precious son had recently passed away.
Fast Forward to this week...Elle and I had the honor and pleasure of meeting Shannon this week. It was her wish to meet us, the family that would be receiving her dear Mack's bath chair. She was a beautiful individual. Along with the chair, she brought a photo of Mack for us to see. He was adorable! Big blue eyes and an angelic face! She shared with us how she loved to sing "Row Row Row your Boat" with him while he was taking a bath. She even told Elle that Mack would watch over her while she was taking a bath to be sure she was safe :-) I was amazed at the strength that she displayed and my heart was warmed in listening her speak of her dear Mack! She even brought along a note with Mack's website and only asked for us to take the time to read it. I promised we would and it was the first thing we did when we got home!! We used Mack's chair last night for the first time and mommy helped Elle blow bubbles and kisses up to Mack in heaven :-) We are so grateful to have received this gift and will always be thankful to this family for donating it to us.
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