On December 1st, 2008 we found Elle in her crib in what we initally described as a catatonic state. Little did we know that the next few hours would prove to be life changing for us. It was in those next few hours and days that we learned that Elle had been born with a rare brain disorder that was just now being discovered. Hopes and dreams died in a small room filled with emergency nurses, Doctors and Neurologists. The news continued to come and with each new update, it got worse. I could go on and describe everything else that happened over the next 5 days that Elle was in the PICU at Wolfson Childrens Hospital, in detail, because I will never, ever forget it.
Instead, today I choose to reflect on all the amazing things that Elle CAN do, many of them things we were told she probably wouldn't do. Although Elle has many, many challenges ahead of her, she has already accomplished so much. Here is her amazing list...
At 21 months Elle CAN:
Roll around the living room for hours, transfer toys between hand, jump in her jumper while interacting with the toys that are connected to it, Elle understands and reacts to us asking her if she wants to "get up", "want milk", "Elle want to eat". Elle laughs hysterically when I give her big kisses in her neck or daddy throws her up into the air. Elle can hold her own bottle and even manages to get the top unscrewed about once a week! She can pick up and drink from her sippy cup and finger feeds herself. She eats orally and loves turkey, chicken, fish, black beans, peas, sweet potatoes, carrots, grilled cheese sandwiches, bananas, apple juice, fresh blueberries, strawberries...I could go on and on :-) These are all food that she feeds herself. Elle has even started to take steps when we hold her in a standing position !! She has always loved being upright. Elle is even able to sit up in a grocery shopping cart with the help of the safety strap. Most recently, Elle is beginning to show signs that she may be learning a few colors. We have a puzzle that we practice with. it has 5 puzzle pieces. Each a different shape and color. 7 times out of 10, Elle will grab the correct piece when I say the color !!
Elle's challenges remain...she is still unable to sit unsupported for longer than a minute and although she makes a plethora of sounds, she doesn't say any words yet...yet! Elle's seizures have become farther and fewer between and we pray that this too continues. Although we are always on alert. It has become second nature to me. At every given moment of the day I have an eye on Elle and am sub-consciously watching her. Her last 2 seizures were in July '09 and September 28, 2009. I continue to have high hopes for my daughter whom I love with all of my heart and all of my soul. Today is not about mourning all the losses again, but celebrating the achievements and the blessing of this amazing little human we call Elle !
Here are some of my most favorite Elle moments from the past 21 months :-)
Tuesday, December 1, 2009
Thanksgiving with The Addys
I always look forward to the Holidays and this year was no different. Not only was it Elle's 2nd Turkey Day, but it would be the first that she would actually be enjoying the turkey and all of it's wonderful accompaniments with us. We had the pleasure of being guests at The Addy's this year, the parents of one of my best friends. The Addy's have become very special to us for so many reasons.
Andy participated in a local run that morning while Elle and I decorated the Pumpkin Cheesecake that we baked the day before. O.K....Elle played on the floor and I decorated :-)
Traveling anywhere with Elle these days requires an arsenal of toys and a way to contain her. Today, that would require both her high chair, for eating dinner and her jumper for entertainment before and after dinner. The Addy's are so thoughtful that they had already planned for Elle's arrival. They even set a special place setting for Elle at the dinner table! You see, The Addy's are HUGE Pittsburgh Steelers fans and this was an opportunity to teach Elle about being a Steelers fan. Elle had a special Steelers placemat, her very own turkey dish and a very special finishing touch...next to her plate was Shannon's silver baby fork and spoon from when she was a baby and also a beautiful silver rattle that belonged to her grandfather when he was little! Now do you see why we love this family so much. They are so thoughtful, gracious, kind and loving.
We all enjoyed a delicious turkey and all the traditional sides to go along. Elle did very well at feeding herself turkey and especially loved Mrs. Addy's stuffing and Aunt Shannon's' green bean casserole. After dinner, Elle continued to burn off her dinner by jumping and jumping and jumping in her jumper for the next 2 hours while the rest of us relaxed on the sofa,enjoyed pumpkin cheesecake and took in some football.
We hope that everyone was able to enjoy a special day with friends and family!
Tuesday, November 10, 2009
Elle's newest surprise!!
I always say that she never ceases to amaze me and today was no different. If you're reading this and you don't know Elle...it will mean nothing to you. If you know her..you'll cheer for her as I did!!
My friend, Kim, and Kate, whom she babysits during the day, headed out for a little shopping and lunch. After a few new outfits for Elle and some new Christmas ornaments to add to our tree this year we headed over to Panera for lunch. Restaurants with Elle are hard sometimes. For starters, Elle is not yet able to sit so she has to stay in her stroller. She gets very fidgety and then starts screaming...her way of "talking". She also doesn't want to be fed, but rather demands to do it herself in no uncertain terms. This is not possible in the stroller, for any baby. Anyway, I got a highchair for Kate and Kim asked if Elle could sit in one. I felt the feeling come on in my chest as I said "no". I just want Elle to do what everyone else does. I must have gotten the..."Hmmm...should we try it?" look on my face because Kim said..."do you want to try? I can sit on one side and hold her and you can sit on her other side?" Kim LOVES kids and if anyone of my friends was going to have the patience to try this, it was going to be Kim. Well, needless to say, I put Elle in and tightened the strap as if she were taking off to the moon! I let go of her shoulders and to my amazement she did it!! My little girl was sitting up in the little wooden restaurant high chair like Kate and like every other toddler!! I was so proud of her. I put her food on the table in front of her and she proceeded to self-feed!! Elle has a high chair at home that she sits in, but that is very different than the ones in restaurants. There is no padding, no tray, no support and Elle really had to use her core to keep herself centered. If it wasn't for Kim, who knows when I would have tried to put her in one! I can't explain the feeling I had today, watching my little girl sitting in that high chair, feeding herself with crumbs and food bits all over the floor under her. It felt so normal. I was so excited I picked up every little crumb and food bit off the floor when she was done...because I could!!! Today was truly one of the best days ever!
My friend, Kim, and Kate, whom she babysits during the day, headed out for a little shopping and lunch. After a few new outfits for Elle and some new Christmas ornaments to add to our tree this year we headed over to Panera for lunch. Restaurants with Elle are hard sometimes. For starters, Elle is not yet able to sit so she has to stay in her stroller. She gets very fidgety and then starts screaming...her way of "talking". She also doesn't want to be fed, but rather demands to do it herself in no uncertain terms. This is not possible in the stroller, for any baby. Anyway, I got a highchair for Kate and Kim asked if Elle could sit in one. I felt the feeling come on in my chest as I said "no". I just want Elle to do what everyone else does. I must have gotten the..."Hmmm...should we try it?" look on my face because Kim said..."do you want to try? I can sit on one side and hold her and you can sit on her other side?" Kim LOVES kids and if anyone of my friends was going to have the patience to try this, it was going to be Kim. Well, needless to say, I put Elle in and tightened the strap as if she were taking off to the moon! I let go of her shoulders and to my amazement she did it!! My little girl was sitting up in the little wooden restaurant high chair like Kate and like every other toddler!! I was so proud of her. I put her food on the table in front of her and she proceeded to self-feed!! Elle has a high chair at home that she sits in, but that is very different than the ones in restaurants. There is no padding, no tray, no support and Elle really had to use her core to keep herself centered. If it wasn't for Kim, who knows when I would have tried to put her in one! I can't explain the feeling I had today, watching my little girl sitting in that high chair, feeding herself with crumbs and food bits all over the floor under her. It felt so normal. I was so excited I picked up every little crumb and food bit off the floor when she was done...because I could!!! Today was truly one of the best days ever!
Our Very Own Miracle !!
I'm sure you're familiar with that saying..."It's a MIRACLE"!!!! Well...up until a few weeks ago, that never really resonated with me. Not to say that I didn't believe in them, I just never really gave the occurrence much thought. I guess you don't until you have something happen in your life that is so amazing and inexplicable...until you actually experience your very own miracle.
We went in for Elle's pre-op appointment. Dr. Loveless, her orthopaedist/orthopaedic surgeon wanted to first get an updated xray as the only one we had was from November '08. So Elle and I went down to ex ray, got our "picture" taken and came back to the room. I always say that I am blessed to have the friends I have and this day was no different. One of my best friends, Shannon, had accompanied us that morning. Shortly after, Dr. Loveless came back in, sat down and with a straight face looked us in the eyes and said "These things usually always get worse. They never get better. I have canceled surgery." Then he handed us the ex-rays. "In all my years, I have never seen anything like this" he said. Still not getting it, Andy & I stared at the ex-ray. Somehow, some way and by nothing short of a miracle, the ball had begun to grow & massively increased in size. Last year, it was the size of the tip of a ball point pen and now it was almost the same size as the other ball!! We were in shock!! He feels that we can get the hip back into alignment though the use of a special brace made especially for Elle. There is a chance that she may still need a small surgery to help better form the hip socket in a couple of years.
A couple of weeks later, Elle was measured for her brace and is currently sporting it! It's pink, suede and steel...so stylish!! She has frog legs in it. Within 3 days, she mastered rolling over both ways. She has also peed in it 3 times and removed it once! She's good!! She should be wearing it 23 hours a day, out only for a bath. We're building up to that. Some days are better than others. She continues to amaze me with her perseverance. We don't know how long she'll have to wear it. We will go back for another scan in 4 months to see how the leg and hip are aligning and if they are. I don't foresee her being in the brace any less than a year and I pray, not longer!
We went in for Elle's pre-op appointment. Dr. Loveless, her orthopaedist/orthopaedic surgeon wanted to first get an updated xray as the only one we had was from November '08. So Elle and I went down to ex ray, got our "picture" taken and came back to the room. I always say that I am blessed to have the friends I have and this day was no different. One of my best friends, Shannon, had accompanied us that morning. Shortly after, Dr. Loveless came back in, sat down and with a straight face looked us in the eyes and said "These things usually always get worse. They never get better. I have canceled surgery." Then he handed us the ex-rays. "In all my years, I have never seen anything like this" he said. Still not getting it, Andy & I stared at the ex-ray. Somehow, some way and by nothing short of a miracle, the ball had begun to grow & massively increased in size. Last year, it was the size of the tip of a ball point pen and now it was almost the same size as the other ball!! We were in shock!! He feels that we can get the hip back into alignment though the use of a special brace made especially for Elle. There is a chance that she may still need a small surgery to help better form the hip socket in a couple of years.
A couple of weeks later, Elle was measured for her brace and is currently sporting it! It's pink, suede and steel...so stylish!! She has frog legs in it. Within 3 days, she mastered rolling over both ways. She has also peed in it 3 times and removed it once! She's good!! She should be wearing it 23 hours a day, out only for a bath. We're building up to that. Some days are better than others. She continues to amaze me with her perseverance. We don't know how long she'll have to wear it. We will go back for another scan in 4 months to see how the leg and hip are aligning and if they are. I don't foresee her being in the brace any less than a year and I pray, not longer!
Thursday, September 17, 2009
Fun on the Swing
I met a friend and her son at the park today. Somehow, we missed the fact that it was 90+ degrees outside. After only 15 minutes, we decided to call it quits, but not before I put Elle on the swing for a quick ride! Elle has been in a swing at the park before, but she was much younger then. She is actually big enough now to reach the chain and hold on. Not that she really does, but she can. What happened next thrilled me be beyond belief. I put Elle into the swing and started to push her. She tossed her head back and started cracking up laughing!! So hard that the sound wasn't coming out. I just watched her for a moment...enjoying every single second of seeing her do something that every other child can do. For those few moments I was able to experience what other parents experience. With tears in my eyes, I ran for the camera. You'll probably get motion sickness watching it :-)
Friday, July 31, 2009
Hip Surgery is Scheduled
I received a call today from the Orthopedist. Elle's surgery to correct her hip-displasia is scheduled for October 2nd at 8:30 a.m. We have one of the best Orthopaedic Surgeons and hope that this surgery will give Elle the flexibility to move her leg in a way that will make sitting possible for her. We still have the Neurological issue that hinders her, but we feel that correcting the hip will help. It will also allow her the ability to walk without a limp when that day comes. Dr. Loveless will preform an open-reduction and femoral shortening. Basically, a section of the femur will be removed allowing the ball at the top of the femur to be brought down and aligned with Elle's hip socket. Her hip socket is still very flat and will have to be hollowed out. The ball is then properly positioned. Elle will then be placed in a Spica Cast. Although we have not gotten the final word, I believe she will be casted from the waist down. She'll remain in the cast for 6 weeks!! We will need to get a special car seat that is designed to fit the cast. Needless to say, it will be a very long 6 weeks. More details to come.
Tuesday, July 28, 2009
A New Doctor & A New Approach...
We are still in the learning stages, but in short, we were put in touch with a new Doctor. Unfortunately, she is in Michigan. Her approach to helping Elle will be a mix of eastern & western medicine. In about 3 weeks, we should have the results from some metabolic testing that she has ordered. The goal is to find out how Elle's body metabolizes what goes into in, what, if anything,she is deficient in and much more. The end result will hopefully allow us to learn what her body may need to increase brain power. What is getting in the way of her ability to focus and track? What will help her with communication and comprehension? And of course...can we gain better control over the seizures?
We will also have some labs drawn locally for b vitamins, MTHFR polymorphism, zinc, selenium and vitamin D.
Dr. Freeman has also suggested we start Elle on a complete gluten free ,dairy free diet. Here is what she had to say...
"She (Elle) can still get adequate vitamins and minerals from almond and rice milk, many children with food sensitivities to casein (milk) are also sensitive to soy. Removal helps to reduce intestinal dysbiosis, and inflammation that results in leaky gut. Intestinal health is also aided by the use of tumeric/curcurmin. This can be used as a supplement or in cooking. It does have a strong taste. Lee Silsby has a good product ENHANSA, that we could use from the capsule in her food. I suspect she would benefit from increased glutathione which we can provide in the form of a cream or supplement. All of this should become clear on the testing. Taurine is an amino acid, that while not classified as an essential amino acid, can under certain circumstances act like one. Several studies have shown Taurine to be deficient in children with seizures. It is ideally adsorbed sublingually, I would suggest starting at 2 drops 2 x per day, under her tongue of the product from American Biologics."
Well, that's it in a nutshell. Basically, the testing will confirm the above or enlighten us to other things. In the mean time, we wait. This is always the hardest part. Unfortunately, most blood & gene testing moves at a glacial pace.
Elle is now 17 months and continues to suprise us daily. She has become very good at using her sippy cup. She has begun to reach to the tray on her stroller for the snacks I strategically leave there. She will actually see something on the floor next to her and reach for it, pulling it to her mouth for further examination :-) Elle is constantly on the move. She rolls all over the living room. Her team of Therapist are still trying to learn if Elle rolls to learn her boundaries, because she is bored or because it is her current mode of transportation. She is doing great at getting both feet to her mouth. If all is quiet in the house and I call her name, she will stop what ever she is doing and flash a huge smile that says, without words, "I hear you mommy, I love you." Brings tears to my eyes just to write that, but I know it's what she's thinking. While on her tummy, she will pull her knees under as if she were going to crawl, but the front end is still flat on the ground. To me, this action tells me that the thought to coordinate this movement in there. We know Elle is physically strong enough to get up on all fours...her brain just doesn't know it yet...YET !!
There is not a day that goes by that my heart doesn't hurt for that little girl. i can stare at her all day...her little teeth, so straight and perfect, her bright eyes, long beautiful eyelashes I envy, a smile that fixes everything and little hands that when they touch you...it's indescribable.
We will also have some labs drawn locally for b vitamins, MTHFR polymorphism, zinc, selenium and vitamin D.
Dr. Freeman has also suggested we start Elle on a complete gluten free ,dairy free diet. Here is what she had to say...
"She (Elle) can still get adequate vitamins and minerals from almond and rice milk, many children with food sensitivities to casein (milk) are also sensitive to soy. Removal helps to reduce intestinal dysbiosis, and inflammation that results in leaky gut. Intestinal health is also aided by the use of tumeric/curcurmin. This can be used as a supplement or in cooking. It does have a strong taste. Lee Silsby has a good product ENHANSA, that we could use from the capsule in her food. I suspect she would benefit from increased glutathione which we can provide in the form of a cream or supplement. All of this should become clear on the testing. Taurine is an amino acid, that while not classified as an essential amino acid, can under certain circumstances act like one. Several studies have shown Taurine to be deficient in children with seizures. It is ideally adsorbed sublingually, I would suggest starting at 2 drops 2 x per day, under her tongue of the product from American Biologics."
Well, that's it in a nutshell. Basically, the testing will confirm the above or enlighten us to other things. In the mean time, we wait. This is always the hardest part. Unfortunately, most blood & gene testing moves at a glacial pace.
Elle is now 17 months and continues to suprise us daily. She has become very good at using her sippy cup. She has begun to reach to the tray on her stroller for the snacks I strategically leave there. She will actually see something on the floor next to her and reach for it, pulling it to her mouth for further examination :-) Elle is constantly on the move. She rolls all over the living room. Her team of Therapist are still trying to learn if Elle rolls to learn her boundaries, because she is bored or because it is her current mode of transportation. She is doing great at getting both feet to her mouth. If all is quiet in the house and I call her name, she will stop what ever she is doing and flash a huge smile that says, without words, "I hear you mommy, I love you." Brings tears to my eyes just to write that, but I know it's what she's thinking. While on her tummy, she will pull her knees under as if she were going to crawl, but the front end is still flat on the ground. To me, this action tells me that the thought to coordinate this movement in there. We know Elle is physically strong enough to get up on all fours...her brain just doesn't know it yet...YET !!
There is not a day that goes by that my heart doesn't hurt for that little girl. i can stare at her all day...her little teeth, so straight and perfect, her bright eyes, long beautiful eyelashes I envy, a smile that fixes everything and little hands that when they touch you...it's indescribable.
Tuesday, July 21, 2009
Stuck !!
>
We had a rather busy morning with therapy and a stop by the grocery store. When we got home, I gave Elle a bottle and put her down for a nap. I had a feeling she may resist the nap since she fell asleep in the grocery store. She drank her bottle and drifted off for a bit. Every now and then I would hear her stirring. Nothing out of the ordinary. We'll little did I know, Elle was working on something. After a few whines that were unfamiliar, I quickly went in to check on her. I found her on her tummy with her legs through the rungs of the crib. No big deal, she does it all the time. When I went to pull her forward and turn her over, I quickly realized why this was different. Little Elldini had squeezed her chubby little legs so far out of the crib that the rungs were now past her knees and she was stuck! When I pulled the crib away from the wall to free her little legs, I realized that I couldn't push her forward...this was going to take more hands. I pushed and pulled for about 5 minutes only to realize what I already knew...this was going to take more hands. I thought, "am I going to have to call the Fire Dept to cut her out?" Fortunately, my wonderful neighbor across the street was home and came running when I called...literally, in her bathrobe with her 3 kids trailing!! Together, we were able to free Elldini and for the first time in over a month, she cried :( I think they were tears of joy over her freedom! So yes, babies legs can get stuck in rungs. I can hear my mother-in-law now..."I told you so" :-)
Thursday, July 2, 2009
Elle's Follow up from the Neurologist & Ophthalmologist
Part of Elle's care is that she is seen by her Neurologist every 3 months. You'd think they would play a pretty big part in her care since she has a brain disorder, but to be honest...all they due is monitor her medication that is prescribed to treat her seizures. I will say that I like Dr. Hammond, however, he is very traditional and claims to be unaware of any leading-edge treatments for either preventing or controlling seizures. I do think he means well, I just wish the first line of defense, for any disease or disorder wasn't medication. Anyway...we discussed all the things that Elle CAN do and he felt that based on those things, there was a good chance that Elle could learn to sit unassisted. It would take time, but he felt we would get there. He also suggested increasing her current dose of Keppra by another .5ml but I declined. "Let's see where we go", I told him. If what we are currently taking has no side effects and Elle had a seizure once a month, then right now...we choose to accept that. The alternative is adding another anti-convulusant drug and weaning her off the Keppra. I really don't want to start "playing" with meds. Nothing new to learn from this appointment.
On to the Ophthalmologist, Dr. Hunter. Of all Elle's Dr.s, we like him the best. He is straight forward, kind, and restored successfully restored Elle's sight. During this check up he dilated her eyes & confirmed that the inner ocular lens implants are perfectly aligned and he doesn't feel that Elle will need glasses until she is of school age. Elle will most likely need to have Eye-Muscle surgery when she is 2 to straighten her eye. It is turned 20 degrees and anything over 12 requires surgery to be realigned. Over all, a great check up!
Elle is currently on a waiting list with Dr. Loveless for her hip surgery. By the 2nd week of August we should have a surgery date. Most likely for October. We are hoping that this will give Elle even more flexibility and enable her to position herself in such a way that she can have a more stable base when sitting. We are working on sitting about 5 times a day. We seat Elle in the Boppy and get her hands on the floor next to her, palms down on the floor. Once she is stable, we give her a medium sized ball. Elle is able to position her both hands on her own onto the ball. She rolls in towards her feet and back for a bit before falling over. She is tolerating it much more and we are hoping that this will help build a connection for her. She is physically strong enough to hold a sitting position, it's just such a highly coordinated skill that her brain hasn't yet caught on. It will, we know it will. Kuddos to Andy for figuring out the trick with the ball. Daddy comes up with some pretty good ideas :)
On to the Ophthalmologist, Dr. Hunter. Of all Elle's Dr.s, we like him the best. He is straight forward, kind, and restored successfully restored Elle's sight. During this check up he dilated her eyes & confirmed that the inner ocular lens implants are perfectly aligned and he doesn't feel that Elle will need glasses until she is of school age. Elle will most likely need to have Eye-Muscle surgery when she is 2 to straighten her eye. It is turned 20 degrees and anything over 12 requires surgery to be realigned. Over all, a great check up!
Elle is currently on a waiting list with Dr. Loveless for her hip surgery. By the 2nd week of August we should have a surgery date. Most likely for October. We are hoping that this will give Elle even more flexibility and enable her to position herself in such a way that she can have a more stable base when sitting. We are working on sitting about 5 times a day. We seat Elle in the Boppy and get her hands on the floor next to her, palms down on the floor. Once she is stable, we give her a medium sized ball. Elle is able to position her both hands on her own onto the ball. She rolls in towards her feet and back for a bit before falling over. She is tolerating it much more and we are hoping that this will help build a connection for her. She is physically strong enough to hold a sitting position, it's just such a highly coordinated skill that her brain hasn't yet caught on. It will, we know it will. Kuddos to Andy for figuring out the trick with the ball. Daddy comes up with some pretty good ideas :)
Saturday, June 20, 2009
Saturday, May 30, 2009
All That Is New :)
Since I have clearly been a slacker and have not been updating this blog as I should be, here is a quick overview of all the stuff that has been going on with us and Elle.
Elle had been seizure free since December. In early April, she had her first break-through seizure. I found her in her crib and was able to rush her to the ER that is about 10 minutes away. She recovered and came home early that evening. The next morning, I got up to go to the gym before Andy left for work. When I came home an hour later I found Rescue in front of the house! Andy, being the great daddy that he is, didn't hear Elle stirring at her usual time that morning. He went in to check on her and found her having another seizure. This one was a bit more involved than the day prior. They got Elle downtown to Wolfsons Children Hospital where she was admitted into the PICU and stayed for 3 days. During this time Elle was found to have developed bi-lateral cataracts !! Cataracts? How the hell does a baby get Cataracts?? We may never know that answer to that question as all the blood tests came back negative. Elle needed surgey on both eyes to regain her eye sight. How many times can a heart break? We got through 6 weeks of Elle not being able to see a thing. She had surgery on her right eye on April 30th and her left eye on May 14th. Fortunately, she was able to receive a lens implant in each eye, eliminating the need for contact lenses. Thank GOD because I can hardly get my own in some days let alone a squirming babies! Elle's eyes healed nicely from her surgery and she will return to see Dr. Hunter in 3 months to find out if she will need eyeglasses. We have seen a huge difference in the things Elle does now that her eyesight has returned :)
It seemed like things were OK for a bit. Elle's surgery was behind us and we were moving forward. Then on Tuesday, Elle suffered another seizure :( It again happened in the morning after Andy left for work. Rescue arrived within 13 minutes and was able to stop the seizure on the way to the hospital. Elle remained in the ER for a few hours until she was awake and showing signs of being back to her usual self.
Many children with Lissencephaly can suffer 1 to 15 or maybe more seizures a day! No, that wasn't a typo. We are fortunate that Elle's have been far a few between. I don't like that she has now had 3 within 7 weeks. I pray everyday for her to be seizure free.
Through all of this, Elle has learned to reach for her bottle or sippy cup when it is on her high chair tray, pull it to her mouth and drink from it! Last Sunday she got her foot to mouth for the first time ever!! Wooo Hoooo. I was so excited!! 9 months behind, but she did it !!! We're looking forward to getting her back into her Physical and Occupational therapy and also starting speech too!!
Elle had been seizure free since December. In early April, she had her first break-through seizure. I found her in her crib and was able to rush her to the ER that is about 10 minutes away. She recovered and came home early that evening. The next morning, I got up to go to the gym before Andy left for work. When I came home an hour later I found Rescue in front of the house! Andy, being the great daddy that he is, didn't hear Elle stirring at her usual time that morning. He went in to check on her and found her having another seizure. This one was a bit more involved than the day prior. They got Elle downtown to Wolfsons Children Hospital where she was admitted into the PICU and stayed for 3 days. During this time Elle was found to have developed bi-lateral cataracts !! Cataracts? How the hell does a baby get Cataracts?? We may never know that answer to that question as all the blood tests came back negative. Elle needed surgey on both eyes to regain her eye sight. How many times can a heart break? We got through 6 weeks of Elle not being able to see a thing. She had surgery on her right eye on April 30th and her left eye on May 14th. Fortunately, she was able to receive a lens implant in each eye, eliminating the need for contact lenses. Thank GOD because I can hardly get my own in some days let alone a squirming babies! Elle's eyes healed nicely from her surgery and she will return to see Dr. Hunter in 3 months to find out if she will need eyeglasses. We have seen a huge difference in the things Elle does now that her eyesight has returned :)
It seemed like things were OK for a bit. Elle's surgery was behind us and we were moving forward. Then on Tuesday, Elle suffered another seizure :( It again happened in the morning after Andy left for work. Rescue arrived within 13 minutes and was able to stop the seizure on the way to the hospital. Elle remained in the ER for a few hours until she was awake and showing signs of being back to her usual self.
Many children with Lissencephaly can suffer 1 to 15 or maybe more seizures a day! No, that wasn't a typo. We are fortunate that Elle's have been far a few between. I don't like that she has now had 3 within 7 weeks. I pray everyday for her to be seizure free.
Through all of this, Elle has learned to reach for her bottle or sippy cup when it is on her high chair tray, pull it to her mouth and drink from it! Last Sunday she got her foot to mouth for the first time ever!! Wooo Hoooo. I was so excited!! 9 months behind, but she did it !!! We're looking forward to getting her back into her Physical and Occupational therapy and also starting speech too!!
What is Lissencephaly ?
Many people have asked us "What does Elle have"?
As described by the Cleveland Clinic:
What is Lissencephaly?
Lissencephaly, which literally means "smooth brain," is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex and an abnormally small head (microcephaly). It is caused during embryonic development by defective neuronal migration, the process in which nerve cells move from their place of origin to their permanent location. Symptoms of the disorder may include unusual facial appearance, difficulty swallowing, failure to thrive, muscle spasms, seizures, and severe psychomotor retardation. Hands, fingers, or toes may be deformed. Lissencephaly may be associated with other diseases including isolated lissencephaly sequence, Miller-Dieker syndrome, and Walker-Warburg syndrome.
Is there any treatment?
The severe malformations of the brain in lissencephaly most likely will not respond to treatment. Normal supportive care may be needed to help with comfort and nursing needs. Seizures may be controlled with medication. Progressive hydrocephalus (an excessive accumulation of cerebrospinal fluid in the brain) may require shunting. If feeding becomes difficult, a gastrostomy tube may be considered.
What is the prognosis?
The prognosis for children with lissencephaly depends on the degree of brain malformation. Many will die before the age of 2. Some will survive, but show no significant development beyond a 3- to 5-month-old level. Others may have near-normal development and intelligence. Children with lissencephaly often die from aspiration of food or fluids, or from respiratory disease.
As described by the Cleveland Clinic:
What is Lissencephaly?
Lissencephaly, which literally means "smooth brain," is a rare, gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex and an abnormally small head (microcephaly). It is caused during embryonic development by defective neuronal migration, the process in which nerve cells move from their place of origin to their permanent location. Symptoms of the disorder may include unusual facial appearance, difficulty swallowing, failure to thrive, muscle spasms, seizures, and severe psychomotor retardation. Hands, fingers, or toes may be deformed. Lissencephaly may be associated with other diseases including isolated lissencephaly sequence, Miller-Dieker syndrome, and Walker-Warburg syndrome.
Is there any treatment?
The severe malformations of the brain in lissencephaly most likely will not respond to treatment. Normal supportive care may be needed to help with comfort and nursing needs. Seizures may be controlled with medication. Progressive hydrocephalus (an excessive accumulation of cerebrospinal fluid in the brain) may require shunting. If feeding becomes difficult, a gastrostomy tube may be considered.
What is the prognosis?
The prognosis for children with lissencephaly depends on the degree of brain malformation. Many will die before the age of 2. Some will survive, but show no significant development beyond a 3- to 5-month-old level. Others may have near-normal development and intelligence. Children with lissencephaly often die from aspiration of food or fluids, or from respiratory disease.
Why I keep this blog.
When I think back to why I started this blog, I recall a few reasons. I thought it would be a great way to keep friends and family up to date with what was going on in our life. It also served as a great way to chronicle all the things Elle was doing and lastly, I hoped that one day, Elle could go back and read it for herself. I still do it for the same reasons plus one. I have recently joined an online group called "The Loop"...The Lissencephaly Loop, to be exact. I hate that word...Lissencephaly !! Anyway, the group is made up of parents & grandparents of children with Lissencephaly. It is a place that I can go anytime I want or need to to connect with other parents going through many of the same challenges we go through with Elle. Many of the families also maintain blogs and have been kind enough to share them through out the group. I will NEVER forget the day we were told that Elle's CAT scan came back "abnormal", then the MRI came back "abnormal" I can't begin to describe the feelings and emotions that raced through my body...The words..."prepare for quality of life" came out of the Dr.s mouth along with other things that to this day I can not let pass through my lips. I hope that other parents that find themselves in that same position can come here and see pictures of Elle and read about all of the things she is doing so that they can see that our children CAN learn and do. If we would have listened to the Dr.s and just brought Elle home and "played" with her I don't think she would be doing some of the things she is doing today. We push her, we have to. It sounds crazy that we push our 15 month old, but sometimes it is the only way she will learn and gain the ability to do something she otherwise would not have been able to do. Lissencephaly is an awful, awful brain disorder and the majority of these children will not crawl or walk or talk and will be severely mentally disabled but if you believe that is all your child will be...then that IS all they will be. We play with Elle, we talk to Elle, we take Elle to the Zoo, we blow bubbles, we go to the park and swing on the swings, we go on play dates, we go shopping... we will take her to Disney World. We will do all the things with her that we would do if she didn't have this brain disorder. We chose to give her an opportunity to learn and see and do. We know that her reaction to some of these experiences will probably not be those of other children, but we still give her the opportunity. Other parents have kids who reach "milestones"...our milestones have been broken down into pebbles but each one is still just as special and exciting.
Thursday, April 9, 2009
Moving Forward
Yesterday we had an appointment with a new Geneticist here in Jacksonville. We were not happy with with the first one we saw as we felt like we were just left hanging. There was no "plan", no path, no direction, no next steps... no answers for Elle. We were able to narrow down the 2 most important things with the new Dr.
1. We want to test to determine if what happened to Elle can happen again if we wanted to have another child.
2. We need to work towards narrowing down a specific syndrome so that we can learn the best ways to help Elle.
They drew blood, which was awful. When they took Elle's blood in the hospital, she was so out of it that she really didn't fuss. Yesterday, she was fully alert and not happy. I can't explain in words how it feels to hold you child down so that her blood can be drawn. We both cried equally. Fortunately, Andy was there and was able to help when I couldn't do it anymore. Elle was a trooper and was praised by Miss. Lily :-) We should receive blood test results back in about 3 weeks. Those results will help determine what test, if any, come next.
They will also be sending Elle's MRI to Dr. Dobyns at The University of Chicago Medical Center. Dr. William Dobyns, Professor of Human Genetics, Neurology and Pediatrics has made major contributions to the field of human genetics, particularly the characterization of human brain malformations. Dr. Dobyns is a recognized expert on birth defects of the brain, especially lissencephaly, or smooth brain disorder. Together with David Ledbetter, PhD, former director of the University of Chicago Center for Medical Genetics, Dr. Dobyns discovered the gene that causes lissencephaly in Miller-Dieker Syndrome and in other cases of isolated lissencephaly. Over the years, he has made significant contributions to the understanding and classification of many different brain malformations.
What does all of this mean for Elle? We don't know. We do know that it doesn't change Elle's MRI or condition. What we are hoping for is the opportunity to learn more about it and how to better help her have the best life she can have. I'll be sure to update the blog as we find out more information.
I am always surprised when someone leaves a comment or tells me that they read the blog. I always appreciate it when people take time from their lives to read about what's going on in ours. You know who you are...Thank you !!
We still have not scheduled Elle's hip surgery for this summer. Hope to have more information on that next week. Until then...we will just LOVE, HUG, KISS, and TEACH that little girl as much as we can!
1. We want to test to determine if what happened to Elle can happen again if we wanted to have another child.
2. We need to work towards narrowing down a specific syndrome so that we can learn the best ways to help Elle.
They drew blood, which was awful. When they took Elle's blood in the hospital, she was so out of it that she really didn't fuss. Yesterday, she was fully alert and not happy. I can't explain in words how it feels to hold you child down so that her blood can be drawn. We both cried equally. Fortunately, Andy was there and was able to help when I couldn't do it anymore. Elle was a trooper and was praised by Miss. Lily :-) We should receive blood test results back in about 3 weeks. Those results will help determine what test, if any, come next.
They will also be sending Elle's MRI to Dr. Dobyns at The University of Chicago Medical Center. Dr. William Dobyns, Professor of Human Genetics, Neurology and Pediatrics has made major contributions to the field of human genetics, particularly the characterization of human brain malformations. Dr. Dobyns is a recognized expert on birth defects of the brain, especially lissencephaly, or smooth brain disorder. Together with David Ledbetter, PhD, former director of the University of Chicago Center for Medical Genetics, Dr. Dobyns discovered the gene that causes lissencephaly in Miller-Dieker Syndrome and in other cases of isolated lissencephaly. Over the years, he has made significant contributions to the understanding and classification of many different brain malformations.
What does all of this mean for Elle? We don't know. We do know that it doesn't change Elle's MRI or condition. What we are hoping for is the opportunity to learn more about it and how to better help her have the best life she can have. I'll be sure to update the blog as we find out more information.
I am always surprised when someone leaves a comment or tells me that they read the blog. I always appreciate it when people take time from their lives to read about what's going on in ours. You know who you are...Thank you !!
We still have not scheduled Elle's hip surgery for this summer. Hope to have more information on that next week. Until then...we will just LOVE, HUG, KISS, and TEACH that little girl as much as we can!
Changing Tides
I'm not really one that likes change. Flashback to High School. I'd get my class schedule, muster up the courage to walk into a new class at the beginning of the new year, find a seat and get settled. Within a few days, for reasons unknown to me, class schedules would change!! I'd get so upset. Now I have to do it all over again...a new path, new faces, another new seat...Life should still be so easy :-) It funny how almost all things change in our lives. Sometimes we crave it and other times we try to avoid it. Some of the hardest change comes when people leave our lives. Today was one of those days. Today was "Miss. Jenny's" last day with Elle. Jenny has been Elle's physical Therapist since Elle was only 3 months. She is an amazing soul and a great physical therapist. We have seen so many results from all that she has taught us on how to help Elle. Although we will still keep in touch with her, we will sincerely miss seeing her bright smile twice a week. She's off to do a Neuro residency at a local rehabilitation hospital for 9 months. We are so happy for her because she will be doing what she loves and helping others get well but at the same time, we will miss her. Elle's goal is to welcome her back in 9 months with a verbal "Hi" and a wave.
Sunday, April 5, 2009
Good Food, Good Wine & Good Company
What a great way to end the weekend... with good food, good wine & good company! Ever since we built and moved into our new house we have had the good fortune of getting to know our neighbors. Their names have been changed to protect their identity- we'll call them "Bob & Mary" :-) I realize that not everyone likes to be mentioned in a blog. Tonight, we were invited for dinner. As always, everything was delish!!
Elle even had a play mate during this visit. Zach, who is 16 months, had his big, blue eyes on her but she was playing hard to get. That's my girl. Zach is absolutely adorable and very well behaved. He colored, danced and even amused us with his knowledge of animal sounds. The things that I never gave a second thought before everything changed with Elle seem to hit me like a ton of bricks these days. A baby giggling, a toddler taking those shaky steps while mommy or daddy hold their tiny hands for support. I find myself mesmerized, staring... and then it starts. It starts at my feet and pushes right into my chest. It's the feelings of frustration, guilt, a grieving over dreams and what's reality and anger. Before I know it I am fighting back tears and having to count to ten to regroup. "Pull it together" I keep telling myself over and over until I can take that deep breath and settle myself inside. Fortunately, I am usually able to remove myself from the area. Tonight was one of those nights. Fortunately, Elle was there tonight and one look at that little face made everything OK. It's funny how as a parent we are there to comfort and soothe our children but the opposite happens at times. We can look to them and they can comfort and soothe us with just a look. In the end, "Mary's " peanut butter brownies were the best medicine. Isn't it funny how a little bit of chocolate & a glass of wine can make you feel soooo good?!
Elle even had a play mate during this visit. Zach, who is 16 months, had his big, blue eyes on her but she was playing hard to get. That's my girl. Zach is absolutely adorable and very well behaved. He colored, danced and even amused us with his knowledge of animal sounds. The things that I never gave a second thought before everything changed with Elle seem to hit me like a ton of bricks these days. A baby giggling, a toddler taking those shaky steps while mommy or daddy hold their tiny hands for support. I find myself mesmerized, staring... and then it starts. It starts at my feet and pushes right into my chest. It's the feelings of frustration, guilt, a grieving over dreams and what's reality and anger. Before I know it I am fighting back tears and having to count to ten to regroup. "Pull it together" I keep telling myself over and over until I can take that deep breath and settle myself inside. Fortunately, I am usually able to remove myself from the area. Tonight was one of those nights. Fortunately, Elle was there tonight and one look at that little face made everything OK. It's funny how as a parent we are there to comfort and soothe our children but the opposite happens at times. We can look to them and they can comfort and soothe us with just a look. In the end, "Mary's " peanut butter brownies were the best medicine. Isn't it funny how a little bit of chocolate & a glass of wine can make you feel soooo good?!
Friday, March 27, 2009
Our Little Elle is Growing Up
It seems that Elle has made that ever so slight change from baby to little girl. She even looks more like a little person and less like a baby. Her emotions are starting to emerge, which is thrilling to us because part of her brain that is affected controls emotions. You can blow berries in her neck or on her tummy and 70% of the time, she'll giggle. She will also let you know when you have taken something from her that she wasn't quite ready to give up. We call this "screaming". She is doing very well with her eating. At 13 months, she is able to pick up larger pieces of food from her high chair tray and gets them into her mouth. I give her puffs each day to help her practice feeding herself. As soon as she sees the container, her little hands start searching all over the tray. Kramer is usually on stand-by in the event anything falls to the floor. He's very efficient :-) We still go to Physical Therapy and Occupational Therapy twice a week and are starting to see new abilities emerging slowly. We have been working on sitting for about 6 months and Elle is now able to sit non-supported for about 3-5 minutes before she tumbles over. She's even venturing out and lifting a hand to play with the toys in front of her. Her current favorites are her drums, a musical piano and a penguin that stands taller that she does! We recently started another day of Therapy to begin work on Elle's speech. Our current goals are to have Elle saying momma and dada by September. The speech therapist feels that she is still playing with sounds in her throat. The step before babbling. We are also working on teaching Elle to say "Up" while putting her arms up in the air.
Some of her favorite foods are- Oatmeal with bananas, carrots, kiwi fruit, mandarin oranges and chicken. I think she is also beginning to enjoy bath time. Usually, she is stiff as a board with hands clenched. recently, she has started kicking her legs and splashing the water all over. She actually held a tub toy last night (Thank you Aunt Carolyn). Now if we could only get that hair growing as fast as the teeth!! Poor thing has 5 teeth coming in at once. Needless to say...Elle is not happy! As far as Elle's condition, we are currently awaiting an appointment with a new geneticist in April. At her 12 month check up Elle was 19 lbs, 27 inches and her head growth had not increased. It also didn't drop off, so that's good. We are still planning on Elle's hip surgery this summer, but have not set a date. I am not looking forward to any part of that, but we'll all get through it. A toddler in a cast from the waist or chest down will be quite the challenge for all. The good thing is that Elle is so young, she won't remember it. We'll update everyone when we have a date set.
Some of her favorite foods are- Oatmeal with bananas, carrots, kiwi fruit, mandarin oranges and chicken. I think she is also beginning to enjoy bath time. Usually, she is stiff as a board with hands clenched. recently, she has started kicking her legs and splashing the water all over. She actually held a tub toy last night (Thank you Aunt Carolyn). Now if we could only get that hair growing as fast as the teeth!! Poor thing has 5 teeth coming in at once. Needless to say...Elle is not happy! As far as Elle's condition, we are currently awaiting an appointment with a new geneticist in April. At her 12 month check up Elle was 19 lbs, 27 inches and her head growth had not increased. It also didn't drop off, so that's good. We are still planning on Elle's hip surgery this summer, but have not set a date. I am not looking forward to any part of that, but we'll all get through it. A toddler in a cast from the waist or chest down will be quite the challenge for all. The good thing is that Elle is so young, she won't remember it. We'll update everyone when we have a date set.
Thursday, February 19, 2009
Before I was a Mom
I received this from a Great Mom...thank you Michele !! Every time I read this it's a reminder of just how amazing it is to be a mom.
author unknown
BEFORE I WAS A MOM
Before I was a Mom;
I made and ate hot meals,
I had unstained clothing,
I brushed my hair every day,
I had quiet conversations on the phone,
I slept as late as I wanted and I slept all night long.
Before I was a Mom;
I cleaned my house each day,
I never tripped over toys or forgot lullabies,
I didn't worry whether or not my plants were poisonous,
I had never been puked on, pooped on, spit on, chewed on, peed on, or
pinched by tiny fingers.
Before I was a Mom;
I never thought about immunizations,
I never held a screaming child so the doctors could give shots,
I never looked into teary eyes and cried,
I never felt my heart break into pieces when I couldn't stop the hurt,
I never got gloriously happy over a simple grin.
Before I was a Mom;
I never held a sleeping baby just because I didn't want to put it down,
I never sat up late hours of the night watching a baby sleep,
I never got up in the middle of the night to make sure everything was okay,
I didn't know how special it could feel to feed a hungry baby.
Before I was a Mom;
I had complete control of my mind, my thoughts and my body,
I didn't know the feeling of having my heart outside of my body,
I didn't know that having something so small could make me feel so
important,
I had never known the warmth, the joy, the love, the heartache,
the wonderment, or the satisfaction of being a mom.
Before I was a Mom;
I never knew that something so small could effect my life so much,
I never knew that I could love someone so much,
I never knew I would love being a Mom,
I didn't know the bond between a Mother and her child,
I didn't know I was capable of feeling so much.
author unknown
BEFORE I WAS A MOM
Before I was a Mom;
I made and ate hot meals,
I had unstained clothing,
I brushed my hair every day,
I had quiet conversations on the phone,
I slept as late as I wanted and I slept all night long.
Before I was a Mom;
I cleaned my house each day,
I never tripped over toys or forgot lullabies,
I didn't worry whether or not my plants were poisonous,
I had never been puked on, pooped on, spit on, chewed on, peed on, or
pinched by tiny fingers.
Before I was a Mom;
I never thought about immunizations,
I never held a screaming child so the doctors could give shots,
I never looked into teary eyes and cried,
I never felt my heart break into pieces when I couldn't stop the hurt,
I never got gloriously happy over a simple grin.
Before I was a Mom;
I never held a sleeping baby just because I didn't want to put it down,
I never sat up late hours of the night watching a baby sleep,
I never got up in the middle of the night to make sure everything was okay,
I didn't know how special it could feel to feed a hungry baby.
Before I was a Mom;
I had complete control of my mind, my thoughts and my body,
I didn't know the feeling of having my heart outside of my body,
I didn't know that having something so small could make me feel so
important,
I had never known the warmth, the joy, the love, the heartache,
the wonderment, or the satisfaction of being a mom.
Before I was a Mom;
I never knew that something so small could effect my life so much,
I never knew that I could love someone so much,
I never knew I would love being a Mom,
I didn't know the bond between a Mother and her child,
I didn't know I was capable of feeling so much.
Tuesday, February 17, 2009
Welcome to Holland
My friend Sharlee shared this with me. She too is a mom to a sweet boy with Lissencephaly. It's for moms of children with disabilities, or children with life threatening illnesses or chronic illness or moms who have lost children. It so perfectly expresses how we feel. Thank you for sharing this Sharlee.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Monday, February 16, 2009
Happy 1st Birthday Elle Francesca Hariton !!!!!
It is hard to believe that this precious, adorable, cuddly little girl has been here a whole year. I can't say that it feels like it flew by. Why? Because I made sure to stop and enjoy every single day and moment with Elle. I didn't want to focus more on anticipating the new things that she would be doing. Instead, I focused on what she was currently doing. If you know our family, you know that the past year has definitely had it's ups and downs health wise, but I couldn't even imagine our lives without Elle. At one year, Elle is still trying to learn to sit. It's a lot of work for her brain and body to coordinate this task, but Miss. Jenny, her physical therapist, thinks she'll get it. Elle just had a hearing test and passed with flying colors. She apparently has "selective hearing" something she got from both her mommy & daddy :-) She is able to localize sounds very well. She is responding better to our voices when we call her now and usually with a huge Elle smile. Her favorite fruit is raspberries! The blowing kind! Yep, our little girl has figured out how to blow raspberries. Her favorite edible fruit is Kiwi.
We celebrated Elle's birthday yesterday with friends & family. We are so fortunate to have such a great group of people surrounding us. Everyone came over for her party. Grandma Jean came in from Naples, Grammy Sue was here, Aunt Carolyn flew in for 5 hours from Boca Raton, "Aunt" JuJu (Julie),"Aunt" Michele, Ann & Savannah, Miss Jenny & Alex, Josh & Wendy, "Aunt" Shannon, Marguerite & CJ, Jill and Danielle and of course, mommy & daddy! Elle received so many presents and they are all perfect to help her continue to improve her hand/eye coordination & stimulate her brain. She even got a pony!!!! Thank you Danielle :-)
Here are some photos of the day. Thanks to "Aunt" Shannon for taking all of them as I was too busy trying to keep little hands out of cake icing :-) And for those of you wondering, yes, she is wearing a tutu! I only have 1 little girl and she will only turn 1 once :-)
A message from Elle:
Thank you all for coming to share my special day with me. I am so happy to have each of you in my life. A baby couldn't ask for more loving, special, kind and generous friends! I love you all!
-elle
Wednesday, January 21, 2009
When Dogs Snore!
The Culprits:
Sophie...The Pug
THE CULPRITS:
Kramer E. Hariton S.G. (super genius)
It's 3:27 a.m. and this is what happens when our dogs snore...I can't SLEEP!! Gone are the days that I could sleep through anything. I miss those days when the only thing that would wake me was something out of the ordinary. Jump to today, everything seems to wake me. Everything being Sophie and Kramer. Sophie the pug snores like a truck driver and Kramer...well, Kramer can hold his own too. The best is when they snore together. One gasps for air, while the other expels a long WHEEEZZZ. It's actually quite comical if your not trying to get sleep. The other problem is that once something wakes me, I'm up! There is no rolling over and falling back to sleep. So I get up, mumble a few choice words at the culprit/s and head off to the living room couch with my pillow in hand like Linus from Charlie Brown. Meanwhile, Andy and the dogs remain nestled in their cozy places. After an average of 2 hours,I return to the bed, again, ready for sleep only to find that Kramer has taken the opportunity to keep my side of the bed warm. After a moment of reasoning with the Labrador that he has to get down, I am able to hop back into MY place in the bed. It is a given that if something wakes me to the point that I get out of the bed, I will over sleep that morning. It's taken a year to get both doggies out of our bed and into their own. Next step...RELOCATION! I think they'd both be happier if their beds were some place else in the house...like upstairs!!
Sophie...The Pug
THE CULPRITS:
Kramer E. Hariton S.G. (super genius)
It's 3:27 a.m. and this is what happens when our dogs snore...I can't SLEEP!! Gone are the days that I could sleep through anything. I miss those days when the only thing that would wake me was something out of the ordinary. Jump to today, everything seems to wake me. Everything being Sophie and Kramer. Sophie the pug snores like a truck driver and Kramer...well, Kramer can hold his own too. The best is when they snore together. One gasps for air, while the other expels a long WHEEEZZZ. It's actually quite comical if your not trying to get sleep. The other problem is that once something wakes me, I'm up! There is no rolling over and falling back to sleep. So I get up, mumble a few choice words at the culprit/s and head off to the living room couch with my pillow in hand like Linus from Charlie Brown. Meanwhile, Andy and the dogs remain nestled in their cozy places. After an average of 2 hours,I return to the bed, again, ready for sleep only to find that Kramer has taken the opportunity to keep my side of the bed warm. After a moment of reasoning with the Labrador that he has to get down, I am able to hop back into MY place in the bed. It is a given that if something wakes me to the point that I get out of the bed, I will over sleep that morning. It's taken a year to get both doggies out of our bed and into their own. Next step...RELOCATION! I think they'd both be happier if their beds were some place else in the house...like upstairs!!
Tuesday, January 13, 2009
Advice for A Great 2009 and Beyond
With all the emails that go around, this one is a keeper. Sent to me by my good friend, Julie. I think it's a great outlook for everyday!!
1. Take a 10-30 minute walk every day. And while you walk, smile. It is
the ultimate anti-depressant.
2. Sit in silence for at least 10 minutes each day. Talk to God about
what is going on in your life.
3. When you wake up in the morning complete the following statement, 'My
purpose is to__________ today. I am thankful for______________'
4. Eat more foods that grow on trees and plants and eat less food that is
manufactured in plants.
5. Drink green tea and plenty of water. Eat blueberries, wild Alaskan
salmon, broccoli, almonds & walnuts.
6. Try to make at least three people smile each day.
7. Don't waste your precious energy on gossip, energy vampires, issues of
the past, negative thoughts or things you cannot control. Instead invest
your energy in the positive present moment.
8. Eat breakfast like a king, lunch like a prince and dinner like a
college kid with a maxed out charge card.
9. Life isn't fair, but it's still good.
10. Life is too short to waste time hating anyone.
11. Don't take yourself so seriously. No one else does.
12. You are not so important that you have to win every argument. Agree
to disagree.
13. Make peace with your past so it won't spoil the present.
14. Don't compare your life to others. You have no idea what their
journey is all about.
15. No one is in charge of your happiness except you.
16. Frame every so-called disaster with these words: 'In five years, will
this matter?'
17. Forgive everyone for everything.
18. What other people think of you is none of your business.
19. GOD heals everything - but you have to ask Him.
20. However good or bad a situation is, it will change.
21. Your job won't take care of you when you are sick. Your friends and
family will. Stay in touch!!!
22. Envy is a waste of time. You already have all you need.
23. Each night before you go to bed complete the following statements: I
am thankful for__________. Today I accomplished_________.
24. Remember that you are too blessed to be stressed.
25. When you are feeling down, start listing your many blessings. You'll
be smiling before you know it.
1. Take a 10-30 minute walk every day. And while you walk, smile. It is
the ultimate anti-depressant.
2. Sit in silence for at least 10 minutes each day. Talk to God about
what is going on in your life.
3. When you wake up in the morning complete the following statement, 'My
purpose is to__________ today. I am thankful for______________'
4. Eat more foods that grow on trees and plants and eat less food that is
manufactured in plants.
5. Drink green tea and plenty of water. Eat blueberries, wild Alaskan
salmon, broccoli, almonds & walnuts.
6. Try to make at least three people smile each day.
7. Don't waste your precious energy on gossip, energy vampires, issues of
the past, negative thoughts or things you cannot control. Instead invest
your energy in the positive present moment.
8. Eat breakfast like a king, lunch like a prince and dinner like a
college kid with a maxed out charge card.
9. Life isn't fair, but it's still good.
10. Life is too short to waste time hating anyone.
11. Don't take yourself so seriously. No one else does.
12. You are not so important that you have to win every argument. Agree
to disagree.
13. Make peace with your past so it won't spoil the present.
14. Don't compare your life to others. You have no idea what their
journey is all about.
15. No one is in charge of your happiness except you.
16. Frame every so-called disaster with these words: 'In five years, will
this matter?'
17. Forgive everyone for everything.
18. What other people think of you is none of your business.
19. GOD heals everything - but you have to ask Him.
20. However good or bad a situation is, it will change.
21. Your job won't take care of you when you are sick. Your friends and
family will. Stay in touch!!!
22. Envy is a waste of time. You already have all you need.
23. Each night before you go to bed complete the following statements: I
am thankful for__________. Today I accomplished_________.
24. Remember that you are too blessed to be stressed.
25. When you are feeling down, start listing your many blessings. You'll
be smiling before you know it.
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