Thursday, December 10, 2009
Quicky
Duke is a definite. We are taking Sam down there in the middle of January. We would really appreciate every one's thoughts and prayers that all goes smoothly. Sam needs to be healthy, healthy, healthy in order for him to receive another re-infusion of stem cells so please pray for his health. I have a lot of different thoughts and feelings about this. I just hope that this re-infusion brings Sam to a better place in his development. We have seen a lot of progress since his first re-infusion; however, the jury is still out if it is the stem cells or all of the therapy he has been getting. I can get into specifics another time. Thanks so much for continuing to stop in. I know I have not been the best updater lately :).
Monday, December 7, 2009
Slacker...
Where to begin. Hmmmmmmmmmmmm...
Sam
Since I last posted we had a tough run in with Sam's feedings again. We changed his feedings to increase his caloric content and nutritional value. Needless to say it did not work and Sam was in a bad way for about a month. Because of his intolerance to the new formula he vomited a lot. At one point he vomited on his bus on the way home from school, aspirated, lost conciousness, and needed to be rushed to the hospital.
We are in a much better place now with Sam. He is doing amazing in school. He is talking using a computer, walking using a special walker, and all of the girls love him in his class (he's the only boy). You know that they say...pimpin ain't easy!
Judah
Judah is a Buddah. He is almost six months and weighs about 20 pounds. He is holding his own bottle, pushing up on all fours, crawling backwards and can sit by himself. Go figure... He is a happy little guy that just loves his big brother.
Scott
Scott's doing well. He just had someone put in storage units into the garage so he is as happy as can be. He has been organizing ever since. The OCD has kicked in overdrive. Personally I'd rather have light fixtures in my kitchen and dining room... Oh well, pick and choose Carrie, pick and choose.
Me
I am working, working, working, and working. By the way did I mention that I was working. I am happy to be working again. It is very difficult to balance everything but I think I have the swing of things at the moment. I am doing some hours at a local hospital, seeing private patients, and teaching grad classes again. I am almost done with this semester and in 2 weeks I do another semester.
On a side note... Scott touched base with Duke and it looks like we are going back down there in January to use the rest of Sam's stem cells. Apparently there is a high correlation between the amount of cells one uses and an increase in progress. They suggested that we go down there so it looks like we are headed there next month.
Wednesday, September 16, 2009
PROCRASTINATION!!!!!!
I have so much to do for work that just thinking about it makes me dizzy... What the hell was I thinking when I decided to go back to work??? Honestly I love it but now I need to play the procrastination game. Sam is in school, Judah is with his nanny and me sigh... I get to breath deep with a minute to myself.
So did I ever tell ya about how Scott and I first started dating??? I didn't... Well then let me tell you...
Scott and I have known each other since we were 10 years old. Yes I know how romantic but I can assure you we did not start dating until 13 years later. Scott was quite the obnoxious wisenheimer back then and I didn't like him very much. Years later we both graduated from college and moved to NYC. Because neither of us knew many people we often hung out just as friends. He would try and fix me up with other guys I would try and fix him up with other girls... But it was always interesting that when things didn't quite work out with the other guys Scott would get a little too excited over my disappointing date life. One evening Scott and I went out to dinner. It was the night before he was going on vacation to Italy. After dinner we walked to a local bar for a drink where he stopped me in the middle of the sidewalk right in front of Sparks and he kissed me. Well at that very moment I knew without a doubt in my mind that Scott was going to be the man I was going to marry. I don't know how I knew it but I just did. Its funny how a split second can determine the rest of your life for the good and for the bad. But in this case of course it was for the good. He left the next day for Italy and a week later when he came home everything just unfolded naturally. In fact the first time I saw his parents after we started dating, which was very shortly after that first kiss, they told me I could call them mom and dad... Whoa... slow down Leshins... But then later I realized that Scott never brought anyone home before and his parents were just so ecstatic that Scott brought home a girl... Ha...
I am so proud to be married to Scott. He is such a great person and I love him so much! He is the best dad with the exception of my father who is also a great dad and Scott's dad who is another great dad. OK this is going no where. I am going to get back to work now.
So did I ever tell ya about how Scott and I first started dating??? I didn't... Well then let me tell you...
Scott and I have known each other since we were 10 years old. Yes I know how romantic but I can assure you we did not start dating until 13 years later. Scott was quite the obnoxious wisenheimer back then and I didn't like him very much. Years later we both graduated from college and moved to NYC. Because neither of us knew many people we often hung out just as friends. He would try and fix me up with other guys I would try and fix him up with other girls... But it was always interesting that when things didn't quite work out with the other guys Scott would get a little too excited over my disappointing date life. One evening Scott and I went out to dinner. It was the night before he was going on vacation to Italy. After dinner we walked to a local bar for a drink where he stopped me in the middle of the sidewalk right in front of Sparks and he kissed me. Well at that very moment I knew without a doubt in my mind that Scott was going to be the man I was going to marry. I don't know how I knew it but I just did. Its funny how a split second can determine the rest of your life for the good and for the bad. But in this case of course it was for the good. He left the next day for Italy and a week later when he came home everything just unfolded naturally. In fact the first time I saw his parents after we started dating, which was very shortly after that first kiss, they told me I could call them mom and dad... Whoa... slow down Leshins... But then later I realized that Scott never brought anyone home before and his parents were just so ecstatic that Scott brought home a girl... Ha...
I am so proud to be married to Scott. He is such a great person and I love him so much! He is the best dad with the exception of my father who is also a great dad and Scott's dad who is another great dad. OK this is going no where. I am going to get back to work now.
Wednesday, September 9, 2009
Sam's First Day of School!
I never would have thought looking back that Sam would be able to go to school at 3 years old. We are so happy that we found such a beautiful program that can provide Sam with all of his needs including medical needs, therapeutic needs, and academic needs. Sam started school yesterday. Grandpa Dave bought Sam his first day of school outfit. He looked just gorgeous! He is accompanied by a nurse and rides the bus both there and back. It is a 5 day a week program from 9-2:30. Yesterday I went to the school at around 1:30. I was told that Sam had a great day! He did not cry at all and he participated in all classroom activities. When I got there Sam was reading a story on the computer. He looked up when he heard my voice then continued to finish what he was doing. After he was done they put him down on the mat and he made his way over to me to give me a hug. It really was so cute. I was told he was good as gold and so attentive. We are so proud of him!!!
Labor Day
We had such a beautiful weekend to mark the end of a very long and busy Summer. Saturday we celebrated Scott's grandmother's (aka Nana)85th birthday. She looks fantastic, would't you agree. The party was at Aunt Iris & Uncle Arnaud's beautiful house on the water. We all had such a great time especially Sam. We had Sam in the pool all day and he even got to go out on Uncle Arnaud's boat which he loved!
Monday, August 24, 2009
New Digs...
I have to say Scott and I could not be happier in our new home. The town is so beautiful and the people all around have been so helpful and great. We have such nice neighbors and there is a ton of stuff to do around here. OUr house came out beautiful and the kids just love it. Sam is doing great! He starts school on Sept. 8th. We have all new nurses for Sam who are just absolutely amazing! Judah is liking his new surroundings too, now if we can just get him to sleep a little bit longer at night things would be just that much better. We still have a ton more to do around the house but thank g-d all of our family has been so amazing to help us out. All the grandparents and even Scott's grandmother has been so helpful in giving us a hand with the kids so we can do things around the house. I will post more pics soon. Here are a few to tide everyone over in the meantime... I have no idea where my camera is so newer pics will have to wait ;).
Friday, August 21, 2009
Loooooooong Overdue
Its been a month since we moved and I have to say I DO NOT miss Brooklyn at all. Don't get me wrong Brooklyn has served us very well but there is something to say about moving into a home where you do not live right on top of other people,where you do not have to listen to the squeak es and squawks of city buses, getting attacked by pigeons and so on and so forth.
So in honor of the good the bad and the ugly of Brooklyn here is my top 10 loves and top 10 hates about good ole Brooklyn...
The Top 10 Things I will NOT miss about Brooklyn
10) I will not miss the city bus that always blocked my driveway because the bus driver decided it was OK to leave the bus parked there so he could go take a piss.
9) I will not miss listening to the stray cats f***ing outside my window at 2 am in the morning that I kid you not use to scare the daylights out of us and wake us out of dead sleep.
8) I will not miss the major city project being done outside my house where every time they used their tremendous jack hammers and such things would fall off of my walls.
7) I will not miss the lovely view of the city bus depot across the street.
6) I will not miss looking at my neighbors bloomers hanging on the clothes line in the yard.
5) I will not miss the noise of the buses coming and going right at the foot of my driveway where you literally had to put the volume of the TV up to 70 in which you still could barely hear what was going on during Oprah.
4) I will not miss the midnight Chinese Karaoke that went on right in back of my house until the wee hours of the morning.
3) I will not miss the Brooklyn traffic where it could take 25 minutes just to go around the corner.
2) I will not miss the intense honking and cursing you would get if g-d forbid you did not slam your foot on the gas as soon as the traffic light turned green.
1) I will not miss the near death experience you encounter every time you get off at exit 5 on the Belt parkway...
Top 10 things I will surely miss about living in Brooklyn
10) I will surely miss the guys at seaview body shop. G-d bless them for fixing my side view mirrors before my husband came home from work every time I knocked one off. And yes they new me by first name.
9) I will surely miss all of the wonderful therapy Sam received for free because we lived in Brooklyn. We really miss everyone and thank g-d we had them as we owe so much of Sam's progress to them.
8) I will surely miss all of Sam's nurses as they also showered him with so much love and attention.
7) I will surely miss Kings Highway bakery for the best seeded twist in the world. Hands down best Italian bread ever!!!
6)I will surely miss the fact that you can get whatever you need whenever you need it 24 hours a day 7 days a week.
5) I will surely miss NATHAN'S, yes the original and it was AWESOME!!! Gotta love a Nathan's frank. And its different if you go to a chain versus the original.
4) I will surely miss having Nellie Bly (A child's amusement park) in the back of my house.
3) I will surely miss having 2 great city parks within a few blocks away from us. Sam I know misses the swings.
2)I will surely miss PISA the greatest Italian specialty store in the entire world. They make there own fresh mozzarella and it is amazing!!!
1) And the number one thing we will all miss so much about Brooklyn is L & B Spumoni Gardens Pizza and Spumoni. There is nothing like it in the entire world!!!!
So in honor of the good the bad and the ugly of Brooklyn here is my top 10 loves and top 10 hates about good ole Brooklyn...
The Top 10 Things I will NOT miss about Brooklyn
10) I will not miss the city bus that always blocked my driveway because the bus driver decided it was OK to leave the bus parked there so he could go take a piss.
9) I will not miss listening to the stray cats f***ing outside my window at 2 am in the morning that I kid you not use to scare the daylights out of us and wake us out of dead sleep.
8) I will not miss the major city project being done outside my house where every time they used their tremendous jack hammers and such things would fall off of my walls.
7) I will not miss the lovely view of the city bus depot across the street.
6) I will not miss looking at my neighbors bloomers hanging on the clothes line in the yard.
5) I will not miss the noise of the buses coming and going right at the foot of my driveway where you literally had to put the volume of the TV up to 70 in which you still could barely hear what was going on during Oprah.
4) I will not miss the midnight Chinese Karaoke that went on right in back of my house until the wee hours of the morning.
3) I will not miss the Brooklyn traffic where it could take 25 minutes just to go around the corner.
2) I will not miss the intense honking and cursing you would get if g-d forbid you did not slam your foot on the gas as soon as the traffic light turned green.
1) I will not miss the near death experience you encounter every time you get off at exit 5 on the Belt parkway...
Top 10 things I will surely miss about living in Brooklyn
10) I will surely miss the guys at seaview body shop. G-d bless them for fixing my side view mirrors before my husband came home from work every time I knocked one off. And yes they new me by first name.
9) I will surely miss all of the wonderful therapy Sam received for free because we lived in Brooklyn. We really miss everyone and thank g-d we had them as we owe so much of Sam's progress to them.
8) I will surely miss all of Sam's nurses as they also showered him with so much love and attention.
7) I will surely miss Kings Highway bakery for the best seeded twist in the world. Hands down best Italian bread ever!!!
6)I will surely miss the fact that you can get whatever you need whenever you need it 24 hours a day 7 days a week.
5) I will surely miss NATHAN'S, yes the original and it was AWESOME!!! Gotta love a Nathan's frank. And its different if you go to a chain versus the original.
4) I will surely miss having Nellie Bly (A child's amusement park) in the back of my house.
3) I will surely miss having 2 great city parks within a few blocks away from us. Sam I know misses the swings.
2)I will surely miss PISA the greatest Italian specialty store in the entire world. They make there own fresh mozzarella and it is amazing!!!
1) And the number one thing we will all miss so much about Brooklyn is L & B Spumoni Gardens Pizza and Spumoni. There is nothing like it in the entire world!!!!
Saturday, July 18, 2009
Last Weekend in Brooklyn
Scott's Pen
This morning I took Sam on our usual morning walk to the bagel store. It’s a great Saturday morning tradition Sam and I started doing since he was born. Then it hit me as I left, this is our last morning walk and we will start a new Saturday morning tradition in Livingston.
It is strange, sad, amazing etc to reflect back on the past three years we have been living in Brooklyn. We came here for a reason, to give my son the best chance in life he can have to walk, talk, eat, sit up, smile etc, and we leave with a tremendous sense of accomplishment. Sam…you did it. When we did not know whether or not you would make it through the night you did, when we did not know whether or not you would ever smile you did, when we did not know whether or not you would sit up you did and your mother and I love you sooo much and are sooo proud of you.
I know that the next three years will be just as amazing as the past (I will leave out the heartache as this is a happy blog post).
I want everyone to know how much I appreciate what each of you have done for us over the past three years.
Dad and Mary, while I may not say it, I am very grateful that you gave up on selling this house and letting us move in without hesitation. It is because of this house and living in Brooklyn that we were able to give Sam as much as we did.
Dad and Mom, thank you for driving from NJ every Sunday through S.I. over the Verrazano and on the Belt in hours of traffic to bring us food, diapers and loving company. It really broke up the weekly routine and gave us and Sam something to look forward to.
Mom, thank you for sleeping in the "dungeon" and flying at a moments notice from FL to NY to be with us at the emergency room and just to cook your amazing dinners and spoil us.
Therapists, thank you for working tirelessly to push our son to do all he could and then some. Thank you for breaking through those plateaus when reached and striving for nothing but perfection from our son.
Nurses, thank you for sleeping next to our baby and providing us with the comfort knowing that Sam would get through the next day. You allowed for us to relax at times and when needed. Mada and Carlene, a special thanks to you. You are family and we love you.
Doctors, thank you for taking our late night calls and seeing us without an appt. Thank you for giving us the encouragement to continue to move forward and thank you for keeping our son alive.
Friends and family, thank you for schlepping to Brooklyn to give us company and a sense of normalcy. Thank you for opening your homes and hearts when we needed it most.
We now leave for the next chapter in the Leshin Family saga, hopefully with less drama. We came with a 3 month old and we leave with a 3 year old and 3 week old. WOW….
This morning I took Sam on our usual morning walk to the bagel store. It’s a great Saturday morning tradition Sam and I started doing since he was born. Then it hit me as I left, this is our last morning walk and we will start a new Saturday morning tradition in Livingston.
It is strange, sad, amazing etc to reflect back on the past three years we have been living in Brooklyn. We came here for a reason, to give my son the best chance in life he can have to walk, talk, eat, sit up, smile etc, and we leave with a tremendous sense of accomplishment. Sam…you did it. When we did not know whether or not you would make it through the night you did, when we did not know whether or not you would ever smile you did, when we did not know whether or not you would sit up you did and your mother and I love you sooo much and are sooo proud of you.
I know that the next three years will be just as amazing as the past (I will leave out the heartache as this is a happy blog post).
I want everyone to know how much I appreciate what each of you have done for us over the past three years.
Dad and Mary, while I may not say it, I am very grateful that you gave up on selling this house and letting us move in without hesitation. It is because of this house and living in Brooklyn that we were able to give Sam as much as we did.
Dad and Mom, thank you for driving from NJ every Sunday through S.I. over the Verrazano and on the Belt in hours of traffic to bring us food, diapers and loving company. It really broke up the weekly routine and gave us and Sam something to look forward to.
Mom, thank you for sleeping in the "dungeon" and flying at a moments notice from FL to NY to be with us at the emergency room and just to cook your amazing dinners and spoil us.
Therapists, thank you for working tirelessly to push our son to do all he could and then some. Thank you for breaking through those plateaus when reached and striving for nothing but perfection from our son.
Nurses, thank you for sleeping next to our baby and providing us with the comfort knowing that Sam would get through the next day. You allowed for us to relax at times and when needed. Mada and Carlene, a special thanks to you. You are family and we love you.
Doctors, thank you for taking our late night calls and seeing us without an appt. Thank you for giving us the encouragement to continue to move forward and thank you for keeping our son alive.
Friends and family, thank you for schlepping to Brooklyn to give us company and a sense of normalcy. Thank you for opening your homes and hearts when we needed it most.
We now leave for the next chapter in the Leshin Family saga, hopefully with less drama. We came with a 3 month old and we leave with a 3 year old and 3 week old. WOW….
Monday, June 22, 2009
Judah Shai Leshin
Hi Everyone... Long time no post. Well this will be a short one as I am still recovering from a C-section. It really really hurts! So Scott and I had our second baby boy Judah on Friday July 19th at 11:18am and we are thrilled! He was born weighing 9lbs. 13 oz. Sam is handling his new little brother quite well actually. He gave him a kiss on his head this evening. It was so precious. I will post more on this soon. Thanks for all of your well wishes!
Thursday, May 28, 2009
Grand Rounds
I'm part of the Family Advisory Board at Maimonides Medical Center. The board is aimed at promoting family centered care, improving the quality of health care for children and families, help develop programs and policies, and to help plan and design new spaces. As part of the board we were asked to present at grand rounds for hospital staff (residents, fellows, doctors, nurses, etc...). This particular presentation is to help these medical professionals better serve their patients and families and give as much of an understanding as we can to what our everyday life consists of. So here is what my presentation looks like. I also made a video and if I can download it I will, I'm having computer issues these days...
Grand Rounds
A Day in the Life of Samuel Leshin
It's very difficult to raise a child with physical disabilities, it's just as difficult to raise a child with severe medical issues, but to raise a child with both is a downright living hell. When you get pregnant and are expecting one of the most wonderful experiences of your life to come upon you, one may think and fantasize will my child be a doctor, a lawyer, the president of the United States. One never thinks will my child walk, talk, eat by mouth.
My name is Carrie Leshin. I am a speech-language pathologist that specializes in feeding and swallowing disorders. I worked at Beth Israel Medical Center in NYC for almost 4 years. There I had extensive experience working with dysphagia of all kinds. Never in my life would I have thought that I would have a child who was born without the ability to swallow.
Towards the very end of my pregnancy I was diagnosed with severe polyhydromnios. When I received this diagnosis I was petrified that the cause was possibly neurological. I prayed for my baby to have a cleft palate, TE fistula, an esophageal atresia… anything but a neurological issue. As soon as my son was born and was put on my chest I knew something was wrong. I asked the doctors while they examined him if there was anything that was wrong. The only thing they noticed and this included the pediatrician and neo-natologist was that Sam's neck was a little floppy and that his left arm did not move as vigorously as his right. Once they put Sam on my chest I noticed immediately how wet and gurgly his vocal quality was as well as his raspy cry. The next thing I noticed was that only the right side of his face moved when he cried and that when I tried to produce a root reflex on both the left and right side of his face I got nothing. I kept saying to all of the doctors and nurses that Sam was not swallowing and part of his face isn't moving. The thing that scared me the most was the wetness of his vocal quality. I kept thinking that he sounded as if he was drowning on his own secretions. When I said this to the doctors and nurses in the recovery room they didn't believe me and told me I was just being paranoid and post partum. Ok let's take a step back for a second and put the logical facts on the table:
1. Mom history of severe polyhydromnios greater than 97%.
2. Baby born with floppy neck, wet gurgly vocal quality, raspy cry, left sided facial paralysis, weakness on the left side of the body and no rooting reflex.
3. Mom SLP with extensive hospital experience in both pediatric and adult dysphagia is absolutely sure that this child is not swallowing.
Now I am being told that I am crazy, but I think this just screams incompetence don't you. Needless to say they sent Sam with me into the maternity unit. Sam was born at 11am and he was not taken to the NICU until 5pm. The only reason why they took him was because I kept insisting that they do and it wasn't until I cursed the pediatrician off and threatened to sue the hospital if my son ended up with an aspiration pneumonia that he was then taken to the NICU. Once in the NICU I was told to leave so that they can evaluate my baby. I told them no and I wanted to know what they were going to do. They wanted to try and feed him. I said absolutely not he will drown he cannot swallow. They did it anyway and that night Sam developed aspiration pneumonia and ended up on C-pap along with all of the other terrible interventions that needed to take place. So in addition to the initial shock of having every single solitary hope and dream fall apart in front of my face, being post partum, healing from a vaginal delivery, I now have to deal with a hospital staff that is totally incompetent.
While at St. Lukes Roosevelt we had no idea what was going on. I was in shock, I was depressed, I was confused and worst of all no one else in the hospital knew what to do or tell me. There was no plan. Finally, approximately 10 days later it was determined that my son needed a gastronomy tube with a nissen fundoplication. Being an SLP and not having all of the facts of what was going on with Sam in terms of a diagnosis I was really against the fundo. I knew he needed a g-tube but I was really scared about the fundo. The NICU docs scheduled Sam for a fundo with their house surgeon for the following morning. The reason why they wanted to do this so quickly was because the surgeon was going away on vacation and he wouldn't be back for 2 weeks. So of course before my husband or I could make any decision we wanted to talk to the surgeon about the surgery and what this meant when we went home etc… The surgeon refused to speak to us until an hour before the surgery was scheduled which was 6:30 am the following morning. At this point I said adios, you will not touch my child we're going to Columbia.
Two days later we were transferred to Morgan Stanley Children's Hospital. There we basically had a million dollar work-up done on Sam which included MRIs, genetic studies, metabolic work-ups etc… It was here that it was concluded that Sam must have stroked in utero but of course not without drama. I can remember like it was yesterday being called into a conference room with a team of doctors, fellows and residents to discuss the findings on the MRI. It was me and my dad and all of these medical professionals getting ready to talk to me about the fate of my child. In short the neurologist said that Sam had bilateral lesions along his brainstem which may be indicative of Leigh's disease. Leigh's disease is a terrible regressive mitochondrial disorder where the prognosis is death by age 3. I was mortified, sick, and suicidal. My entire life ended in that room and all the while these residents and fellows sat there staring at me while they drank their coffee and ate their snacks.
Thankfully that diagnosis was wrong and now we were faced with the now what phase. Since no one really knew of a prognosis we all decided that it would be best to give Sam a g-j tube versus a g-tube with nissen fundoplication. The Columbia surgeons refused to do this so we had to transfer Sam yet again to another NICU and this time we went to NYU. Shortly after Sam's surgery was finished we were able to take him home with 12 hour nighttime nurse duty. We were home for about 10 hours and then back in the hospital but this time taken to Maimonides. Looking back I realize that I was not ready to take Sam home. I was not properly trained nor informed on all of the trials and tribulations of g-j tube feedings. In addition the nurse that they sent us was completely incompetent and knew nothing.
Thankfully at Maimonides the ER doctor was smart enough to admit Sam to the PICU in order for me to be better prepared to take him home. Unfortunately he contracted RSV while there and we were in the hospital for another 10 days.
Now almost 3 years later we still have to bare the heartache and reality of what all of the previous information actually means to our everyday life.
Sam now gets almost 24 hour nursing and approximately 25 hours of therapy a week through early intervention. He has to endure daily medical treatments in order for him to stay healthy. This is what one day in our house looks like on a good day.
Daily Schedule
5:00 am - prevacid
5:30 am- 1st feeding of similac 160 mls/ ½ hr.
6:15 - Sam wakes up
6:30 - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• Pulmocort
• The vest for 20 minutes
• Cough assist
7:00- 7:30am - Occupational Therapy
7:45 - 2nd feeding
7:30 - 8:30am - Special Instruction
9ish am - Nap (usually lasts 45 min)
10:00 am - 3rd feeding
12:15 pm - 4th feeding
12:00 - 1:00 pm - Speech therapy
2:00 - 3:00pm - Physical therapy
3:00 pm - 5th feeding
5:15 pm - 6th feeding
6 pm - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• Pulmocort
• The vest for 20 minutes
• Cough assist
7:00 pm - Bath
7:00 pm - Prevacid
7:30pm - 7th feeding
8:00 pm ish - Bedtime
This is a normal day in our home. It is very rare that the day goes this smoothly as I am at the mercy of several different doctor's appointments every month, nursing call-outs/ cancellations, therapy cancellations and changes, schedule changes to feedings because of illness or tolerance issues or because the therapists come late or re-schedule, insurance mess ups, surgeries and all of the other emergencies that can pop up at any moment on any given day. I have been to the ER with Sam 3 times already this year. Every single solitary day I wake up to having to run a marathon. Every single solitary day I wake up with a pit in my stomach, a constant stabbing, at the amount of stuff we have to do to just give my son the best possible chance that life has to offer him. I love my son very much, but if I knew that this would be my life before I chose to have kids I would not have done it. I wouldn’t wish this existence on anyone and my experience is cake compared to some of the other stories you are going to hear today.
Scott wrote this part...
Movie stars and athletes constantly tell their fans that they are not role models, but they are and if they don't like the pressure that comes with it than they should reconsider. This is analogous to you who are not only medical doctors but psychologists. When helping a child with severe disabilities you are not only helping the child but also helping the parents deal with the overwhelming feeling of loss and helplessness that comes along with raising that child. So when you write a script and send the family on their way, look that mother or father in the eye and ask if there is anything else you can do, any questions you can answer and any glimmer of hope you can provide.
Grand Rounds
A Day in the Life of Samuel Leshin
It's very difficult to raise a child with physical disabilities, it's just as difficult to raise a child with severe medical issues, but to raise a child with both is a downright living hell. When you get pregnant and are expecting one of the most wonderful experiences of your life to come upon you, one may think and fantasize will my child be a doctor, a lawyer, the president of the United States. One never thinks will my child walk, talk, eat by mouth.
My name is Carrie Leshin. I am a speech-language pathologist that specializes in feeding and swallowing disorders. I worked at Beth Israel Medical Center in NYC for almost 4 years. There I had extensive experience working with dysphagia of all kinds. Never in my life would I have thought that I would have a child who was born without the ability to swallow.
Towards the very end of my pregnancy I was diagnosed with severe polyhydromnios. When I received this diagnosis I was petrified that the cause was possibly neurological. I prayed for my baby to have a cleft palate, TE fistula, an esophageal atresia… anything but a neurological issue. As soon as my son was born and was put on my chest I knew something was wrong. I asked the doctors while they examined him if there was anything that was wrong. The only thing they noticed and this included the pediatrician and neo-natologist was that Sam's neck was a little floppy and that his left arm did not move as vigorously as his right. Once they put Sam on my chest I noticed immediately how wet and gurgly his vocal quality was as well as his raspy cry. The next thing I noticed was that only the right side of his face moved when he cried and that when I tried to produce a root reflex on both the left and right side of his face I got nothing. I kept saying to all of the doctors and nurses that Sam was not swallowing and part of his face isn't moving. The thing that scared me the most was the wetness of his vocal quality. I kept thinking that he sounded as if he was drowning on his own secretions. When I said this to the doctors and nurses in the recovery room they didn't believe me and told me I was just being paranoid and post partum. Ok let's take a step back for a second and put the logical facts on the table:
1. Mom history of severe polyhydromnios greater than 97%.
2. Baby born with floppy neck, wet gurgly vocal quality, raspy cry, left sided facial paralysis, weakness on the left side of the body and no rooting reflex.
3. Mom SLP with extensive hospital experience in both pediatric and adult dysphagia is absolutely sure that this child is not swallowing.
Now I am being told that I am crazy, but I think this just screams incompetence don't you. Needless to say they sent Sam with me into the maternity unit. Sam was born at 11am and he was not taken to the NICU until 5pm. The only reason why they took him was because I kept insisting that they do and it wasn't until I cursed the pediatrician off and threatened to sue the hospital if my son ended up with an aspiration pneumonia that he was then taken to the NICU. Once in the NICU I was told to leave so that they can evaluate my baby. I told them no and I wanted to know what they were going to do. They wanted to try and feed him. I said absolutely not he will drown he cannot swallow. They did it anyway and that night Sam developed aspiration pneumonia and ended up on C-pap along with all of the other terrible interventions that needed to take place. So in addition to the initial shock of having every single solitary hope and dream fall apart in front of my face, being post partum, healing from a vaginal delivery, I now have to deal with a hospital staff that is totally incompetent.
While at St. Lukes Roosevelt we had no idea what was going on. I was in shock, I was depressed, I was confused and worst of all no one else in the hospital knew what to do or tell me. There was no plan. Finally, approximately 10 days later it was determined that my son needed a gastronomy tube with a nissen fundoplication. Being an SLP and not having all of the facts of what was going on with Sam in terms of a diagnosis I was really against the fundo. I knew he needed a g-tube but I was really scared about the fundo. The NICU docs scheduled Sam for a fundo with their house surgeon for the following morning. The reason why they wanted to do this so quickly was because the surgeon was going away on vacation and he wouldn't be back for 2 weeks. So of course before my husband or I could make any decision we wanted to talk to the surgeon about the surgery and what this meant when we went home etc… The surgeon refused to speak to us until an hour before the surgery was scheduled which was 6:30 am the following morning. At this point I said adios, you will not touch my child we're going to Columbia.
Two days later we were transferred to Morgan Stanley Children's Hospital. There we basically had a million dollar work-up done on Sam which included MRIs, genetic studies, metabolic work-ups etc… It was here that it was concluded that Sam must have stroked in utero but of course not without drama. I can remember like it was yesterday being called into a conference room with a team of doctors, fellows and residents to discuss the findings on the MRI. It was me and my dad and all of these medical professionals getting ready to talk to me about the fate of my child. In short the neurologist said that Sam had bilateral lesions along his brainstem which may be indicative of Leigh's disease. Leigh's disease is a terrible regressive mitochondrial disorder where the prognosis is death by age 3. I was mortified, sick, and suicidal. My entire life ended in that room and all the while these residents and fellows sat there staring at me while they drank their coffee and ate their snacks.
Thankfully that diagnosis was wrong and now we were faced with the now what phase. Since no one really knew of a prognosis we all decided that it would be best to give Sam a g-j tube versus a g-tube with nissen fundoplication. The Columbia surgeons refused to do this so we had to transfer Sam yet again to another NICU and this time we went to NYU. Shortly after Sam's surgery was finished we were able to take him home with 12 hour nighttime nurse duty. We were home for about 10 hours and then back in the hospital but this time taken to Maimonides. Looking back I realize that I was not ready to take Sam home. I was not properly trained nor informed on all of the trials and tribulations of g-j tube feedings. In addition the nurse that they sent us was completely incompetent and knew nothing.
Thankfully at Maimonides the ER doctor was smart enough to admit Sam to the PICU in order for me to be better prepared to take him home. Unfortunately he contracted RSV while there and we were in the hospital for another 10 days.
Now almost 3 years later we still have to bare the heartache and reality of what all of the previous information actually means to our everyday life.
Sam now gets almost 24 hour nursing and approximately 25 hours of therapy a week through early intervention. He has to endure daily medical treatments in order for him to stay healthy. This is what one day in our house looks like on a good day.
Daily Schedule
5:00 am - prevacid
5:30 am- 1st feeding of similac 160 mls/ ½ hr.
6:15 - Sam wakes up
6:30 - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• Pulmocort
• The vest for 20 minutes
• Cough assist
7:00- 7:30am - Occupational Therapy
7:45 - 2nd feeding
7:30 - 8:30am - Special Instruction
9ish am - Nap (usually lasts 45 min)
10:00 am - 3rd feeding
12:15 pm - 4th feeding
12:00 - 1:00 pm - Speech therapy
2:00 - 3:00pm - Physical therapy
3:00 pm - 5th feeding
5:15 pm - 6th feeding
6 pm - nebulizer treatments (entire regimen last for 40 minutes if Sam cooperates)
• Xoponex & atrovent mixed
• Pulmocort
• The vest for 20 minutes
• Cough assist
7:00 pm - Bath
7:00 pm - Prevacid
7:30pm - 7th feeding
8:00 pm ish - Bedtime
This is a normal day in our home. It is very rare that the day goes this smoothly as I am at the mercy of several different doctor's appointments every month, nursing call-outs/ cancellations, therapy cancellations and changes, schedule changes to feedings because of illness or tolerance issues or because the therapists come late or re-schedule, insurance mess ups, surgeries and all of the other emergencies that can pop up at any moment on any given day. I have been to the ER with Sam 3 times already this year. Every single solitary day I wake up to having to run a marathon. Every single solitary day I wake up with a pit in my stomach, a constant stabbing, at the amount of stuff we have to do to just give my son the best possible chance that life has to offer him. I love my son very much, but if I knew that this would be my life before I chose to have kids I would not have done it. I wouldn’t wish this existence on anyone and my experience is cake compared to some of the other stories you are going to hear today.
Scott wrote this part...
Movie stars and athletes constantly tell their fans that they are not role models, but they are and if they don't like the pressure that comes with it than they should reconsider. This is analogous to you who are not only medical doctors but psychologists. When helping a child with severe disabilities you are not only helping the child but also helping the parents deal with the overwhelming feeling of loss and helplessness that comes along with raising that child. So when you write a script and send the family on their way, look that mother or father in the eye and ask if there is anything else you can do, any questions you can answer and any glimmer of hope you can provide.
Monday, May 11, 2009
The Best Mother's Day Ever!!!
Mother's Day for me during the past 3 years has been for the most part sad and filled with anxiety, like most holidays really. Its been a time for me to reflect on what I always dreamed motherhood would be for me and then to accept the reality of what it really is. Sam has been doing great and because of this I am able to truly focus on all of the accomplishments that we as a family have made. I have been more thankful than not lately and just so grateful that I have such an amazing husband who is so supportive in every single way.
This Mother's Day Scott let me sleep in and brought me coffee and a blueberry Dunkin Doughnuts muffin in bed. It was heavenly. Then Scott packed up Sam and a picnic and we went to Prospect Park. It was absolutely beautiful! The weather was perfect and Sam was amazing and happy. It was honestly the best Mother's Day ever! Thanks so much Scott you are AWESOME!!!
Can you believe this is Brooklyn???
This Mother's Day Scott let me sleep in and brought me coffee and a blueberry Dunkin Doughnuts muffin in bed. It was heavenly. Then Scott packed up Sam and a picnic and we went to Prospect Park. It was absolutely beautiful! The weather was perfect and Sam was amazing and happy. It was honestly the best Mother's Day ever! Thanks so much Scott you are AWESOME!!!
Can you believe this is Brooklyn???
Sunday, May 10, 2009
Happy Mother's Day….
Scott's Pen
I was thinking about whether or not to write this as if I am Sam or just to simply write this as the husband of a woman who is truly the best mom in the world. I know everyone has a mug or teeshirt proclaiming themselves as the best but let’s put it all to rest…Carrie is the best.
Over the past three years Carrie has been and will continue to be in the near future, tested as a mom like no one else I know (there are a few exceptions). She has met every challenge head-on with determination to see her son get the very best life has to offer. She tirelessly pursues every avenue whether medical, therapeutic or just simply being there when exhaustion has overcome everyone else. Sam is very lucky to have my beautiful wife as his mother. All of the gains that he has made and the visits to the ER he is now starting to avoid with greater frequency are a direct result of Carrie.
I know Carrie has written in the past examples of her day and my Son's challenges so I will not re-write them here. I just want to say thank you from both myself and Sam for staying strong, keeping up with the demands of raising a child with special needs and most importantly showing Sam a love that never waivers, never tires and continues to grow with each day.
We love you,
Sam and Scott
I was thinking about whether or not to write this as if I am Sam or just to simply write this as the husband of a woman who is truly the best mom in the world. I know everyone has a mug or teeshirt proclaiming themselves as the best but let’s put it all to rest…Carrie is the best.
Over the past three years Carrie has been and will continue to be in the near future, tested as a mom like no one else I know (there are a few exceptions). She has met every challenge head-on with determination to see her son get the very best life has to offer. She tirelessly pursues every avenue whether medical, therapeutic or just simply being there when exhaustion has overcome everyone else. Sam is very lucky to have my beautiful wife as his mother. All of the gains that he has made and the visits to the ER he is now starting to avoid with greater frequency are a direct result of Carrie.
I know Carrie has written in the past examples of her day and my Son's challenges so I will not re-write them here. I just want to say thank you from both myself and Sam for staying strong, keeping up with the demands of raising a child with special needs and most importantly showing Sam a love that never waivers, never tires and continues to grow with each day.
We love you,
Sam and Scott
Saturday, May 9, 2009
Over and Done!
After about a 2 month delay Sam finally had his ear tubes replaced, his adenoids removed and his strabismus corrected. Of course this was not without some sort of drama as minor as it may have been...
Sam's surgery was scheduled at NY Eye and Ear. They have a beautiful pediatric out patient surgical facility that was for the most part very organized, clean, comfortable, and the nurses and nursing aids were just amazing. So we get there at 6:15 am to check in for Sam's procedures that should have been for 7:30am. Now during the preliminary pre-op stuff that comes along with any procedure weeks before the actual D-day I specifically asked if I needed to talk to the anesthesiologists prior to coming in for the procedure. I was told no and that all Sam needed was clearance from his pulmonologist and we were ready to go.
So about 20 minutes before Sam had to go down for surgery the anesthesiologist came in to talk to me and as I giving Sam's history I could see his face starting to turn from a friendly pre-op consult type of smile to a holy shit lady there is no way in hell I am intubating your kid. By this point in the day Sam had already been hysterical as the boy knew the second we walked into the hospital this was not going to be a good day for him. Sam was scared to death and crying non-stop since we got there. So of course this leads to him sound even juicier than normal and when the anesthesiologist listened to him he was obviously really alarmed. I told the doctor that Sam is really fine and has never had a problem being extubated. If anything he may need a nebulizer treatment but other than that he can hold his own on room air pretty quickly after they pull the tubes out. Anyway the doctor was still really uncomfortable which made Sam's ENT really uncomfortable... PS they wanted to post-pone the surgery to do it at NYU instead of NY Eye and Ear. Of course Scott immediately lost his shit and his first words were "Who do I have to harass at NYU to get this done today?" By this time the opthomologist had left to get changed and go back to his office up town and a few minutes later the chief of anesthesia came in looked at Sam spoke to me for 2 seconds and said this was not going to be a problem at all let's continue. SO of course Scott goes flying out of the room to get the opthamologist (it literally took 2 months to coordinate this surgery and I do not have another 2 months to get this done).
In the end everything worked out great. The entire procedure with both doctors took a total of 45 minutes from start to finish. Sam did not need nebulizer treatments after.. YAY! He was pretty uncomfortable for the rest of the day but this morning he woke up perfect... smiling, happy, playful, etc... I could not be more grateful that all is well and Sam is doing FANTASTIC!!! His eye looks kind of red but its not as bad as I thought it would be and he is breathing so much better because of the adenoids and he is responding so much better to speech because his ears are perfectly clear!!!
Sam's surgery was scheduled at NY Eye and Ear. They have a beautiful pediatric out patient surgical facility that was for the most part very organized, clean, comfortable, and the nurses and nursing aids were just amazing. So we get there at 6:15 am to check in for Sam's procedures that should have been for 7:30am. Now during the preliminary pre-op stuff that comes along with any procedure weeks before the actual D-day I specifically asked if I needed to talk to the anesthesiologists prior to coming in for the procedure. I was told no and that all Sam needed was clearance from his pulmonologist and we were ready to go.
So about 20 minutes before Sam had to go down for surgery the anesthesiologist came in to talk to me and as I giving Sam's history I could see his face starting to turn from a friendly pre-op consult type of smile to a holy shit lady there is no way in hell I am intubating your kid. By this point in the day Sam had already been hysterical as the boy knew the second we walked into the hospital this was not going to be a good day for him. Sam was scared to death and crying non-stop since we got there. So of course this leads to him sound even juicier than normal and when the anesthesiologist listened to him he was obviously really alarmed. I told the doctor that Sam is really fine and has never had a problem being extubated. If anything he may need a nebulizer treatment but other than that he can hold his own on room air pretty quickly after they pull the tubes out. Anyway the doctor was still really uncomfortable which made Sam's ENT really uncomfortable... PS they wanted to post-pone the surgery to do it at NYU instead of NY Eye and Ear. Of course Scott immediately lost his shit and his first words were "Who do I have to harass at NYU to get this done today?" By this time the opthomologist had left to get changed and go back to his office up town and a few minutes later the chief of anesthesia came in looked at Sam spoke to me for 2 seconds and said this was not going to be a problem at all let's continue. SO of course Scott goes flying out of the room to get the opthamologist (it literally took 2 months to coordinate this surgery and I do not have another 2 months to get this done).
In the end everything worked out great. The entire procedure with both doctors took a total of 45 minutes from start to finish. Sam did not need nebulizer treatments after.. YAY! He was pretty uncomfortable for the rest of the day but this morning he woke up perfect... smiling, happy, playful, etc... I could not be more grateful that all is well and Sam is doing FANTASTIC!!! His eye looks kind of red but its not as bad as I thought it would be and he is breathing so much better because of the adenoids and he is responding so much better to speech because his ears are perfectly clear!!!
Wednesday, May 6, 2009
What's New in Leshin Land
The Spring season has been a very busy one for us to say the least. Fortunately we have many wonderful things to look forward to and with that of course comes all of the responsibilities, organizing and planning it takes to get to all of those wonderful things that are coming in the next few months.
For starters Sam has surgery this Friday. He is getting his ear tubes replaced and his strabismus corrected. This involves two separate procedures in which Sam will have to be under general anesthesia and intubated. Though both procedures are small the whole intubation process scares me to death. As I've explained before Sam's lungs do not work the same way typical developers do so intubation is a serious thing.
In the meantime... We are preparing for our next bundle of joy to arrive sometime in June, we are building a house, moving in August, trying to get Sam evaluated and into school for September, trying to transfer nurse service, medicaid service in addition to our insurance coverage, medical equipment service, find Sam great therapy for after school, find new doctors, figuring out employment for myself, and I am sure there are about 100 other things I am just not thinking of at the moment. I have to say though I am so lucky I have the best partner in the world. And... we have a lot of support from family and friends so as stressful as this time may sound we have it for the most part under control because of all of the wonderful people we have helping us.
Here's a picture of Sam doing therapy with his SLP. That contraption around his neck is something our fabulous SLP devised to give Sam head and neck support so he can swallow more efficiently during therapy.
For starters Sam has surgery this Friday. He is getting his ear tubes replaced and his strabismus corrected. This involves two separate procedures in which Sam will have to be under general anesthesia and intubated. Though both procedures are small the whole intubation process scares me to death. As I've explained before Sam's lungs do not work the same way typical developers do so intubation is a serious thing.
In the meantime... We are preparing for our next bundle of joy to arrive sometime in June, we are building a house, moving in August, trying to get Sam evaluated and into school for September, trying to transfer nurse service, medicaid service in addition to our insurance coverage, medical equipment service, find Sam great therapy for after school, find new doctors, figuring out employment for myself, and I am sure there are about 100 other things I am just not thinking of at the moment. I have to say though I am so lucky I have the best partner in the world. And... we have a lot of support from family and friends so as stressful as this time may sound we have it for the most part under control because of all of the wonderful people we have helping us.
Here's a picture of Sam doing therapy with his SLP. That contraption around his neck is something our fabulous SLP devised to give Sam head and neck support so he can swallow more efficiently during therapy.
Thursday, April 2, 2009
Hormones, Hormones, Hormones!
OK before I delve into this one I am going to preface this post by apologizing in advanced to all the women out there that have a hard time getting pregnant or that cannot get pregnant or cannot stay pregnant etc... No one is dealt 4 aces and everyone has problems... Some worse than others and given my circumstance I feel that I reserve the right to be as raw and as opinionated as I want to be in my following rant...
First of all I am ever so grateful to be pregnant and I do feel blessed that I am and I absolutely LOVE, LOVE, LOVE feeling this little one inside me kicking and rolling around. It is a magical feeling and I am appreciative. However if one more person calls me big I am going to drop kick them in their face. Or if my husband criticizes what I want to eat or what I do eat I am going to fucking throw him out of the house and make him live with his parents. I am very hungry and although I am eating very healthy foods and making sure I get all the calcium and protein I need I want peperoni pizza and a Wendy's cheeseburger with a frosty and after I am done blogging that is the first thing I am going to do. My crotch is KILLING me and my back aches all the time. I can barely move and its not because I am big its because I am pregnant and running around everywhere with barely any time to take it easy and rest. I am tired and grouchy and everyone is bothering the living daylights out of me. Passover is next week and my mother-in-law is making brisket (its the best)and I plan on eating most of it without sharing it with anyone!
Sooooo many people have been asking to see a prego picture of me and have been asking how much weight I've gained. I have to say because of my pregnancy with Sam I am very self conscious of how I look. When I was pregnant with Sam I looked like I was having triplets and EVERYONE on the street or who I knew would tell me how tremendous I was. Little did I or anyone else know that the reason I was showing so big was because I had too much amniotic fluid and something was wrong. It was awful. This time around my stomach is still very big but everything is normal. Oh well, so plastic surgery is in my future what can I say... So for all of you people out there that need to know my weight gain and what I look like here you go... I'm just letting it all hang out...
So here she is weighing in at a whopping 145lbs @ 28 weeks with a total weight gain of 23 lbs so far and a bra size of a 36 E... Yup E could you believe it. And for those of you perverts that think Scott is a lucky man he is not allowed to touch me right now so keep dreaming...
First of all I am ever so grateful to be pregnant and I do feel blessed that I am and I absolutely LOVE, LOVE, LOVE feeling this little one inside me kicking and rolling around. It is a magical feeling and I am appreciative. However if one more person calls me big I am going to drop kick them in their face. Or if my husband criticizes what I want to eat or what I do eat I am going to fucking throw him out of the house and make him live with his parents. I am very hungry and although I am eating very healthy foods and making sure I get all the calcium and protein I need I want peperoni pizza and a Wendy's cheeseburger with a frosty and after I am done blogging that is the first thing I am going to do. My crotch is KILLING me and my back aches all the time. I can barely move and its not because I am big its because I am pregnant and running around everywhere with barely any time to take it easy and rest. I am tired and grouchy and everyone is bothering the living daylights out of me. Passover is next week and my mother-in-law is making brisket (its the best)and I plan on eating most of it without sharing it with anyone!
Sooooo many people have been asking to see a prego picture of me and have been asking how much weight I've gained. I have to say because of my pregnancy with Sam I am very self conscious of how I look. When I was pregnant with Sam I looked like I was having triplets and EVERYONE on the street or who I knew would tell me how tremendous I was. Little did I or anyone else know that the reason I was showing so big was because I had too much amniotic fluid and something was wrong. It was awful. This time around my stomach is still very big but everything is normal. Oh well, so plastic surgery is in my future what can I say... So for all of you people out there that need to know my weight gain and what I look like here you go... I'm just letting it all hang out...
So here she is weighing in at a whopping 145lbs @ 28 weeks with a total weight gain of 23 lbs so far and a bra size of a 36 E... Yup E could you believe it. And for those of you perverts that think Scott is a lucky man he is not allowed to touch me right now so keep dreaming...
Friday, March 20, 2009
More Brianna Lynn Band Pics...
Here she definitely looks like her Aunt Carrie...
She really is such a cute baby and of course I'm not biased or anything...
She really is such a cute baby and of course I'm not biased or anything...
Wednesday, March 18, 2009
My Baby Brother Had a Baby!!!
We welcome Brianna Band into this world. She was born 3-18-09 weighing 5 lbs 9 oz. Baby and mommy are doing well. Mazel Tov Adam and Carrie on your precious new baby girl!!! Uncle Scott is especially happy because today is his birthday as well. So happy birthday Uncle Scott and baby Brianna YAY!!!
Friday, March 13, 2009
Looking Good... Feeling Good...
Sam has barely opened his eyes in 3 days no exaggeration. That is what scared me and his doctors and was the icing on the cake of why we went back to the ER on Wed. He was still mushy today but definitely more alert with better respiration and saturation. Maybe about 15 minutes ago he sat up to play, he laughed, and smiled so I think it is safe to say he is getting better. I am keeping my fingers crossed that he stays on this upward swing with NO relapse! Thanks for all of your support, thoughts and prayers they work!!!
Thursday, March 12, 2009
911
So yesterday I was a lot more calm then to be expected given Sam's situation. I was upset but calm and not feeling the need to throw my shoe at someone. So through tues. night into Wed. early morning I noticed Sam's demeanour was just not right and his breathing slowly but surely was becoming more labored even with his treatments. I called Sam's pulmonologist in the morning and he wanted us to come back to the ER for x-rays and bloods. In the past I promised myself that if Sam ever appeared to be in this kind of respiratory distress I was going to call 911 and not deal with driving him to the hospital. I highly suggest this for all parents regardless if your child has special needs or not. If your child seems to be in respiratory distress or is having a severe allergic reaction to something DO NOT take your child to the hospital in your car regardless of who else is with you. I had my mother and a nurse but did I really want to deal with Sam turning blue on me in my car or deal with stupid receptionists that want you to sign in before they can see you in triage...
So once we packed Sam up I calmly called 911 and explained that my child is stable at the moment because we have lots of equipment at home (02, suction, umboo(sp?) bag, etc...) but he is in respiratory distress and I do not want to take him to the hospital in my car without the ability to intubate if need be. So in NYC the fire department comes to the house first when there is a respiratory issue just because they are usually the closest. This is actually a cool thing. If you don't live in NYC you probably don't know this but, NYC fire fighters are HOT AS HELL! No exaggeration, I think its like a pre-requisite or something. There had to be like 12 fire fighters in my house yesterday morning. For a moment you forget what the present issue at hand is and think wow did g-d just send me a present... Anyway EMS came and we were on our way to the hospital. Pretty uneventful. We got there and Scott had left work to meet us there. He just couldn't stay at work given what had been going on with sam for the past 3 weeks. We were pretty lucky because Sam's pulmonologist was there, his pediatrician was there and they had the head of the pediatric department take care of Sam so you know they left no stone unturned and they worked hard and fast to figure out what was going on and give us a plan. For all of this I am grateful and we will have to see what happens today. To be cont...
So once we packed Sam up I calmly called 911 and explained that my child is stable at the moment because we have lots of equipment at home (02, suction, umboo(sp?) bag, etc...) but he is in respiratory distress and I do not want to take him to the hospital in my car without the ability to intubate if need be. So in NYC the fire department comes to the house first when there is a respiratory issue just because they are usually the closest. This is actually a cool thing. If you don't live in NYC you probably don't know this but, NYC fire fighters are HOT AS HELL! No exaggeration, I think its like a pre-requisite or something. There had to be like 12 fire fighters in my house yesterday morning. For a moment you forget what the present issue at hand is and think wow did g-d just send me a present... Anyway EMS came and we were on our way to the hospital. Pretty uneventful. We got there and Scott had left work to meet us there. He just couldn't stay at work given what had been going on with sam for the past 3 weeks. We were pretty lucky because Sam's pulmonologist was there, his pediatrician was there and they had the head of the pediatric department take care of Sam so you know they left no stone unturned and they worked hard and fast to figure out what was going on and give us a plan. For all of this I am grateful and we will have to see what happens today. To be cont...
Wednesday, March 11, 2009
Anybody Have a Gun...
Sam has pneumonia. We were in the ER all day. I will add the details later. We are back home for now unless he gets worse which in that case they will have to admit him for IV antibiotics. Please pray that Sam get better really soon and that we do not have to go to the hospital. On a lighter note my mom came in from Florida today hallelujah!!!! She spoils the hell out of me to the point of bringing me coffee and breakfast in bed. Yeah I'm rotten. I will post again soon with updates. Thanks for all the e-mails and support I really appreciate it!
Tuesday, March 10, 2009
Long but informative...
Sam is still sick... I understand that people don't get it nor do I expect people to get it but I'd like to try and explain if I can. Sam is severely hypotonic. This doesn't just mean that he's weak on the outside his muscles controlling his internal organs are weak as well. This is why he is so prone to respiratory illness. What does this mean... It means that some one else's cold that may just be a sniffle can turn into a full blown pneumonia for Sam. Why??? Because his lungs do not function normally at baseline and when he is over producing mucus when he is ill his lungs become even more compromised... Which means that he cannot expel mucus and breathe to the same capacity that typical functioning people do... which means that it takes him forever to get better because the longer bacteria is able to sit and grow in his lungs the more it multiplies and the worse he gets.
Now of course there are the antibiotics... A whole other issue... The docs cannot put Sam on typical antibiotics because his infections are way way too strong for them so he has to go on antibiotics that would knock anyone for a loop. Cipro... about one of the worst drugs for the rest of your system is what Sam is on at the moment. He's been on it for almost 2 weeks and he got sick again Sunday night on then again. His system is even more compromised because now because his entire GI tract is fucked up... He may have C.diff again which is a really nasty and painful bug that can kill someone like Sam and it takes FOREVER to get rid of it. I am actually pretty sure he has it at the moment as we spent most of the day in the ER yesterday getting a full work up. In the midst of the work up Sam's x-rays showed that his lungs look like crap still so he is on another strong and nasty antibiotic on top of the Cipro and if all of his cultures come back to say C.Diff he's going to be placed on yet another antibiotic, all of which make Sam weak and feel like complete garbage and unable to sleep and tolerate his feedings which then compromise his system even more which makes it almost impossible for him to get better. In addition to the C.Diff and being on all of these antibiotics which caused the C.diff make Sam have chronic diarrhea which in turn sets his poor tushy on fire which makes him even more uncomfortable and miserable. FUN!!!
I am not blaming this illness on anyone by any means. I am pretty sure that the reason why he got sick in the first place is because we got the go ahead to try experimenting with swallowing certain tastes because he has been well for so long and his swallowing seemed to be improving. So I think this all started with trace aspiration of tastes which of course compromised his immune system and set him up to catch anything and everything under the sun. When you aspirate even a small amount your airway begins to hypersecrete (is that even a word?)and Sam cannot handle it as I mentioned above he cannot expel the secretions like we can.
I am thankful that most of our friends and family understand and don't take it personally when we are adamant about hand washing and shoes off and of course being unable to go to most get togethers and what not. Even those that cannot fully understand at least respect our rules and decisions regarding Sam. So thank you.
As a side note the ER experience yesterday while tremendously exhausting was more pleasant than not. I came in there like a bat out of hell yelling and cursing at everyone and anyone in my way... I have just about had it at this point with everything going on with Sam and other crazy stupid things going on in my life. So when the stupid recepcionist told me I had to sign in and pointed to a place where there was no clip board to sign in on I got annoyed... I told her to just buzz me into triage anyway my baby has special needs is respiratorily compromised and has been retching and throwing mucus plugs all day and he needs to be attended to immediately. So the stupid cow says well you have to sign in so I said... ready for this one... so in my psycho yell I said open the fucking door you fuckwit your going to be responsible for killing my baby, he can turn blue at any moment asshole. I know I'm such a lady ;). Then the resident came running around and opened the door and of course at that point Sam started retching and choking and guess what??? Some other asshole tech in a condisending tone goes you have to leave the stoller in the waiting room. I just ignored him and pushed him out of my way as we were trying to get Sam suctioned and stable and onto a pulse O2 machine. Lucky for Sam the resident and nurse at hand were very dilligent and competent in taking Sam right away. They saw how crazed I was and could even have treated me with an attitude right back but they were pretty calm, caring and concerned and they did what they had to do immediately for Sam.
All tests and cultures were taken right away which is always helpful and most of the waiting was just seeing what some of the labs looked like before sending us home. However... they wanted a stool sample and since we had been unable to feed Sam for some time because he could not tolerate feeds I knew he was not going to poop on his own. We got into the ER at 11:30ish and literally sat around until 4 waiting for Sam to poop. I kept begging for them to just give him a suppository and they wouldn't. In the meantime Scott kept calling the ER docs to find out what was going on. I laughed and told them they were lucky he wasn't here because he is a thousand times worse than I am. They chuckled, I'm exhausted with preggo body aches and pains and starving and Sam is getting really agitated and starting to throw my nerves into tornado mode.
At 4:30 Scott showed up at the hospital and it was like the clouds opened up and the light shown through. He wanted to know why we weren't getting discharged yet and I told him we were waiting for Sam to poop and explained that he probably wouldn't and he would need a suppository yadda yadda yadda. Scott goes give me 30 seconds. He walks over to the resident calls her by her first name and says listen I understand your concern but my kid is not going to poop now unless you give him a suppository. She said she felt uncomfotable doing that blah blah blah so Scott said look eventually I am going to drive you so crazy that you're going to end up giving it to him anyway just to get rid of me so you might as well just do it now. With that in less than 2 minutes the suppository was given, Sam pooped, sample, taken, discharge summary written and signed and we were on our way home. Go Scooter!!! My knight in shinning armour. And yes we rent Scott out by the hour to anyone that requires a ball buster.
Now of course there are the antibiotics... A whole other issue... The docs cannot put Sam on typical antibiotics because his infections are way way too strong for them so he has to go on antibiotics that would knock anyone for a loop. Cipro... about one of the worst drugs for the rest of your system is what Sam is on at the moment. He's been on it for almost 2 weeks and he got sick again Sunday night on then again. His system is even more compromised because now because his entire GI tract is fucked up... He may have C.diff again which is a really nasty and painful bug that can kill someone like Sam and it takes FOREVER to get rid of it. I am actually pretty sure he has it at the moment as we spent most of the day in the ER yesterday getting a full work up. In the midst of the work up Sam's x-rays showed that his lungs look like crap still so he is on another strong and nasty antibiotic on top of the Cipro and if all of his cultures come back to say C.Diff he's going to be placed on yet another antibiotic, all of which make Sam weak and feel like complete garbage and unable to sleep and tolerate his feedings which then compromise his system even more which makes it almost impossible for him to get better. In addition to the C.Diff and being on all of these antibiotics which caused the C.diff make Sam have chronic diarrhea which in turn sets his poor tushy on fire which makes him even more uncomfortable and miserable. FUN!!!
I am not blaming this illness on anyone by any means. I am pretty sure that the reason why he got sick in the first place is because we got the go ahead to try experimenting with swallowing certain tastes because he has been well for so long and his swallowing seemed to be improving. So I think this all started with trace aspiration of tastes which of course compromised his immune system and set him up to catch anything and everything under the sun. When you aspirate even a small amount your airway begins to hypersecrete (is that even a word?)and Sam cannot handle it as I mentioned above he cannot expel the secretions like we can.
I am thankful that most of our friends and family understand and don't take it personally when we are adamant about hand washing and shoes off and of course being unable to go to most get togethers and what not. Even those that cannot fully understand at least respect our rules and decisions regarding Sam. So thank you.
As a side note the ER experience yesterday while tremendously exhausting was more pleasant than not. I came in there like a bat out of hell yelling and cursing at everyone and anyone in my way... I have just about had it at this point with everything going on with Sam and other crazy stupid things going on in my life. So when the stupid recepcionist told me I had to sign in and pointed to a place where there was no clip board to sign in on I got annoyed... I told her to just buzz me into triage anyway my baby has special needs is respiratorily compromised and has been retching and throwing mucus plugs all day and he needs to be attended to immediately. So the stupid cow says well you have to sign in so I said... ready for this one... so in my psycho yell I said open the fucking door you fuckwit your going to be responsible for killing my baby, he can turn blue at any moment asshole. I know I'm such a lady ;). Then the resident came running around and opened the door and of course at that point Sam started retching and choking and guess what??? Some other asshole tech in a condisending tone goes you have to leave the stoller in the waiting room. I just ignored him and pushed him out of my way as we were trying to get Sam suctioned and stable and onto a pulse O2 machine. Lucky for Sam the resident and nurse at hand were very dilligent and competent in taking Sam right away. They saw how crazed I was and could even have treated me with an attitude right back but they were pretty calm, caring and concerned and they did what they had to do immediately for Sam.
All tests and cultures were taken right away which is always helpful and most of the waiting was just seeing what some of the labs looked like before sending us home. However... they wanted a stool sample and since we had been unable to feed Sam for some time because he could not tolerate feeds I knew he was not going to poop on his own. We got into the ER at 11:30ish and literally sat around until 4 waiting for Sam to poop. I kept begging for them to just give him a suppository and they wouldn't. In the meantime Scott kept calling the ER docs to find out what was going on. I laughed and told them they were lucky he wasn't here because he is a thousand times worse than I am. They chuckled, I'm exhausted with preggo body aches and pains and starving and Sam is getting really agitated and starting to throw my nerves into tornado mode.
At 4:30 Scott showed up at the hospital and it was like the clouds opened up and the light shown through. He wanted to know why we weren't getting discharged yet and I told him we were waiting for Sam to poop and explained that he probably wouldn't and he would need a suppository yadda yadda yadda. Scott goes give me 30 seconds. He walks over to the resident calls her by her first name and says listen I understand your concern but my kid is not going to poop now unless you give him a suppository. She said she felt uncomfotable doing that blah blah blah so Scott said look eventually I am going to drive you so crazy that you're going to end up giving it to him anyway just to get rid of me so you might as well just do it now. With that in less than 2 minutes the suppository was given, Sam pooped, sample, taken, discharge summary written and signed and we were on our way home. Go Scooter!!! My knight in shinning armour. And yes we rent Scott out by the hour to anyone that requires a ball buster.
Thursday, March 5, 2009
To Facebook or Not To Facebook...
Recently some of my anti facebook friends decided to take a ride on the wild side and join facebook. I know the culture shock of it all can be quite overwhelming to some. All of a sudden people you haven't seen or spoken to in 20 years can easily contact you and invite you to be your friend... To accept or ignore... That entirely is a whole other post.
So say you accept the friendships... now people can peak into your world and you can peak into theirs, you can contact people on a whim easily without digging up an e-mail address, you can make new business contacts with people you knew a long time ago but lost touch with, you can rekindle old friendships and so on and so forth. There is a lot of criticism about facebook but I really don't see the big deal. I generally ignore whomever I have no desire to reconnect with and the people who I have friended I feel good knowing that I can contact quickly. I generally ignore the mass invites for other stuff such as the "good karma" or "give hugs" blah, blah, blah... But to be honest facebook has helped us a lot. For example, an old friend from high school is in his family's pediatric home nursing business in NJ... Hello could that be any more convenient for us right now. Another friend I recently found out does home entertainment and surveillance installment... Could come in handy with the new house... Nanny cam anyone... Especially with the falling economy its nice to know you have access to so many "friends" to maybe reach out to for potential job opportunities. I also like that I get to keep in contact with my fam from Israel, friends in Florida, Scott's family, etc... I mean really who do I have time to call and send individual e-mails to. The day goes by so fast and your intentions are to call this one and that one but you get distracted and poof out of your head. However... when I log on to facebook and that person's face or name pop up on my home page I can say hey, oh yeah... I meant to call that one... let me send a quick hello and let them know I'm thinking of them. Easy peasy lemon squeezy... ANd there you have it my take on facebook. No big deal, no harm no foul...
So say you accept the friendships... now people can peak into your world and you can peak into theirs, you can contact people on a whim easily without digging up an e-mail address, you can make new business contacts with people you knew a long time ago but lost touch with, you can rekindle old friendships and so on and so forth. There is a lot of criticism about facebook but I really don't see the big deal. I generally ignore whomever I have no desire to reconnect with and the people who I have friended I feel good knowing that I can contact quickly. I generally ignore the mass invites for other stuff such as the "good karma" or "give hugs" blah, blah, blah... But to be honest facebook has helped us a lot. For example, an old friend from high school is in his family's pediatric home nursing business in NJ... Hello could that be any more convenient for us right now. Another friend I recently found out does home entertainment and surveillance installment... Could come in handy with the new house... Nanny cam anyone... Especially with the falling economy its nice to know you have access to so many "friends" to maybe reach out to for potential job opportunities. I also like that I get to keep in contact with my fam from Israel, friends in Florida, Scott's family, etc... I mean really who do I have time to call and send individual e-mails to. The day goes by so fast and your intentions are to call this one and that one but you get distracted and poof out of your head. However... when I log on to facebook and that person's face or name pop up on my home page I can say hey, oh yeah... I meant to call that one... let me send a quick hello and let them know I'm thinking of them. Easy peasy lemon squeezy... ANd there you have it my take on facebook. No big deal, no harm no foul...
Sunday, March 1, 2009
Sick of Sick...
So Sam has been pretty ill the last week or so with bronchitis. He is on the mend but of course Scott and I caught a little of what Sam had/has... Just when you think things are getting better and Sam is more stable you get hit in the back of the head with a 2x4 and it HURTS!!! Sam for the most part has done pretty well this winter considering... His respiratory regimens have gotten more intense and because of this I can pretty much say for sure is the reason why Sam has stayed out of the hospital. We do 3 nebulizer treatments both morning and night. After the nebs Sam gets "The Vest", then he gets "the cough assist."
When Sam gets sick we have to do this regimen at least 4 times a day. I'm not complaining as it really helps keep him healthy for the most part and when he gets sick it helps him get better fast. So its either all this equipment or the hospital. I vote for the equipment. Most hospitals are usually filled with a bunch of dumb asses anyway.
Speaking of hospitals I was invited to be part of the family advisory board at one of the hospitals Sam visits frequently. I started attending meetings back in Sept. I like it and feel that I have a lot to contribute. I mostly like it because every few meetings the head of pediatrics attends and I get to bitch to him directly about the morons in the hospital. He happens to be one of the most amazing and humbled doctors I have ever spoken too. Actually most of Sam's doctors are not only great doctors but are just so nice and attentive as well. When I speak of the morons in the hospital I am mostly talking residents, ER nurses, techs, etc... Not all of them but most of them. Sam is lucky that Scott and I could be total assholes and just act like everyone works for us. I'm generally not like this when it comes to me but when it comes to Sam there is nothing I wouldn't do or say. For example... the last time we had to run to the ER it was packed. The nurse evaluated Sam in the triage then asked us to go back out into the waiting room until we were called. So in the nicest most polite voice I could possibly muster at that moment I said, "My son doesn't wait in a waiting room ever, he is severely respitorily compromised, needs constant suctioning, gets fed solely through a g-tube and can turn on us at any second... And if he destats and starts turning blue and is not immediately attended to I will hold you personally responsible. Oh and by the way we are always given the private room behind you because we need our own sink and television :)." And of course within 5 minutes we were in the private room. I don't know what my point is with this story... I don't know if I would have ever been this assertive if it weren't for Sam and Scott. Scott really taught me to be this way. I was always more of a people pleaser, which in some ways I still am. However, when it comes to Sam I am borderline psychotic and could care less about anything else.
Sam also lost one of his PE
Tubes. So next week we see the ENT and schedule a date to get them replaced. This requires Sam to be anesthetized and intubated which is never fun for me, but considering all that Sam has already been through this procedure is cake.
When Sam gets sick we have to do this regimen at least 4 times a day. I'm not complaining as it really helps keep him healthy for the most part and when he gets sick it helps him get better fast. So its either all this equipment or the hospital. I vote for the equipment. Most hospitals are usually filled with a bunch of dumb asses anyway.
Speaking of hospitals I was invited to be part of the family advisory board at one of the hospitals Sam visits frequently. I started attending meetings back in Sept. I like it and feel that I have a lot to contribute. I mostly like it because every few meetings the head of pediatrics attends and I get to bitch to him directly about the morons in the hospital. He happens to be one of the most amazing and humbled doctors I have ever spoken too. Actually most of Sam's doctors are not only great doctors but are just so nice and attentive as well. When I speak of the morons in the hospital I am mostly talking residents, ER nurses, techs, etc... Not all of them but most of them. Sam is lucky that Scott and I could be total assholes and just act like everyone works for us. I'm generally not like this when it comes to me but when it comes to Sam there is nothing I wouldn't do or say. For example... the last time we had to run to the ER it was packed. The nurse evaluated Sam in the triage then asked us to go back out into the waiting room until we were called. So in the nicest most polite voice I could possibly muster at that moment I said, "My son doesn't wait in a waiting room ever, he is severely respitorily compromised, needs constant suctioning, gets fed solely through a g-tube and can turn on us at any second... And if he destats and starts turning blue and is not immediately attended to I will hold you personally responsible. Oh and by the way we are always given the private room behind you because we need our own sink and television :)." And of course within 5 minutes we were in the private room. I don't know what my point is with this story... I don't know if I would have ever been this assertive if it weren't for Sam and Scott. Scott really taught me to be this way. I was always more of a people pleaser, which in some ways I still am. However, when it comes to Sam I am borderline psychotic and could care less about anything else.
Sam also lost one of his PE
Tubes. So next week we see the ENT and schedule a date to get them replaced. This requires Sam to be anesthetized and intubated which is never fun for me, but considering all that Sam has already been through this procedure is cake.
Friday, February 20, 2009
Me, Myself, & I
For a long while I have been meaning to change the premise of my blog a little. The truth is very often I write about what I see and experience. Most of which includes Sam and of course, and some of which does not. My entries will pretty much be the same... I will still keep postings of the goings on of Sam with pictures and all that fun stuff. I just felt it unfair to keep the title Sam's world when my ego centrism kept getting in the way... Oh well you all know how that goes.
I chose the title In Through The Outdoor as a reference of the constant struggle I deal with on a daily basis. Its the struggle of keeping Sam alive (literally), giving him the best chance life has to offer, organizing and delegating responsibility to about 20 different people on any given day, marriage, and of course trying to keep my sense of self alive all the while trying to continue to find joy, happiness and comfort out of life.
I chose the title In Through The Outdoor as a reference of the constant struggle I deal with on a daily basis. Its the struggle of keeping Sam alive (literally), giving him the best chance life has to offer, organizing and delegating responsibility to about 20 different people on any given day, marriage, and of course trying to keep my sense of self alive all the while trying to continue to find joy, happiness and comfort out of life.
So Livingston It Is...
Scott and I have been trying to figure out where to move for at least 2 years now. NY is great for children that need early intervention but I prefer the schools in NJ for the later years. Actually NJ was not the only place we were considering. We considered doing a huge lifestyle change which would have involved us moving to Florida, North Carolina, possibly Colorado???? We also have racked our brains trying to figure out where in NJ to live if it was going to be NJ. It was a tough decision because we had to consider soooo many things such as commute for Scott, school district, special needs funding within the school district, type of home ranch vs. 2 story with an elevator option, affordability... So we finally found this new townhouse development with an elevator option and an open floor plan that was within our price range and a close enough commute for Scott plus the town has excellent services for children with special needs. So Livingston it is...
Tuesday, February 17, 2009
Jibjab
Anyone out there ever hear of Jibjab... Anyway if you haven't I suggest checking it out. They are more well known for their political stuff. The creators of Jibjab are 2 brothers that went to my highschool and I even dated one of them for like 5 minutes... I have been sending all my e-cards through this website and its hysterical. Its also great if you want to embarrass your nearest and dearest on line... Sorry honey... You know how I love to drive you crazy...
Try JibJab Sendables® eCards today!
Tuesday, February 10, 2009
At Peace and Humility
Yesterday we took Sam for a full speech-language and swallowing evaluation at Columbia University's speech and language clinic. The evaluation was partially conducted by student clinicians and partially conducted and supervised by Dr. Justine Joan Sheppard (the Sigmund Freud of pediatric feeding and swallowing). When I go back to school for my PhD it has to be at Columbia. What an amazing program.
During this evaluation, as with any evaluation for my son, certain realities set in about all the challenges and limitations Sam has to face and that we will have to face for the rest of our lives. Will he eat, will he talk, can he learn, will he get stronger, am I going to have to change his pamper until the day I die etc... Of course I will always remain hopeful that Sam will exceed every expectation imaginable but there is of course the possibility that he may not. In the past I've always left these evaluations feeling empty, sad, anxious, defeated, pretty much sick to my stomach and unable to get through the day without telling someone, anyone to fuck off. But yesterday... yesterday was different.
Yesterday I left the evaluation feeling calm, happy, peaceful, hungry ;), and like I really learned something... I felt smarter. Not only about more strategies and things we can do to help Sam, but things about myself and our "situation". I was able to stay in the moment and not project. I was really able to enjoy sharing our experience with the students and Dr. Sheppard and at the same time enjoy what I was learning about my son regardless of strength or weakness. It was an empowering experience which I have found that I am having more often these days. You see, when you've spent years in constant anguish about the fate of your child it starts to poison your soul. But once you choose to be in a better place you start appreciating and really loving every experience whether good or bad. Of course this is not easy and I am no more special than anyone else. We can all do this you know you just have to choose to.
Something about humility that we can all learn from... I think, no I know... that the positive feelings I felt when leaving the clinic had a lot to do with the energy that surrounded Sam and myself. There was a definitive air of humility from our SLP, Genie, that accompanied us to the eval, from the students and most of all from Dr. Sheppard. In my travels as an SLP I've noticed way too much pretension and arrogance on the part of colleagues, doctors, therapists, nurses, etc... All through my own judgement had NOTHING to be snotty about. But now here I am with THE pediatric feeding and swallowing guru and she was so grateful as were the students of our presence with them for the two hours we were there. Not only did they thank us numerous times for being there but you truly felt the sincerity behind their words. I think it is safe to say that we all learned an enormous amount from Sam. Which leads me back to the peace part...
In my coming peace there is acceptance. Its the acceptance of feeling and believing that I was chosen or maybe I chose to care for Sam who is this being of greatness with great challenges. I have come to accept and be grateful for all that I have learned and will continue to learn from Sam so that we can selflessly help others with only the best intentions. Although this thought process comes with great struggle I have felt it and hope that even in the darkest of times I am able to believe, truly believe that there is a purpose for all of the challenges we face and that there is a happy ending in sight.
During this evaluation, as with any evaluation for my son, certain realities set in about all the challenges and limitations Sam has to face and that we will have to face for the rest of our lives. Will he eat, will he talk, can he learn, will he get stronger, am I going to have to change his pamper until the day I die etc... Of course I will always remain hopeful that Sam will exceed every expectation imaginable but there is of course the possibility that he may not. In the past I've always left these evaluations feeling empty, sad, anxious, defeated, pretty much sick to my stomach and unable to get through the day without telling someone, anyone to fuck off. But yesterday... yesterday was different.
Yesterday I left the evaluation feeling calm, happy, peaceful, hungry ;), and like I really learned something... I felt smarter. Not only about more strategies and things we can do to help Sam, but things about myself and our "situation". I was able to stay in the moment and not project. I was really able to enjoy sharing our experience with the students and Dr. Sheppard and at the same time enjoy what I was learning about my son regardless of strength or weakness. It was an empowering experience which I have found that I am having more often these days. You see, when you've spent years in constant anguish about the fate of your child it starts to poison your soul. But once you choose to be in a better place you start appreciating and really loving every experience whether good or bad. Of course this is not easy and I am no more special than anyone else. We can all do this you know you just have to choose to.
Something about humility that we can all learn from... I think, no I know... that the positive feelings I felt when leaving the clinic had a lot to do with the energy that surrounded Sam and myself. There was a definitive air of humility from our SLP, Genie, that accompanied us to the eval, from the students and most of all from Dr. Sheppard. In my travels as an SLP I've noticed way too much pretension and arrogance on the part of colleagues, doctors, therapists, nurses, etc... All through my own judgement had NOTHING to be snotty about. But now here I am with THE pediatric feeding and swallowing guru and she was so grateful as were the students of our presence with them for the two hours we were there. Not only did they thank us numerous times for being there but you truly felt the sincerity behind their words. I think it is safe to say that we all learned an enormous amount from Sam. Which leads me back to the peace part...
In my coming peace there is acceptance. Its the acceptance of feeling and believing that I was chosen or maybe I chose to care for Sam who is this being of greatness with great challenges. I have come to accept and be grateful for all that I have learned and will continue to learn from Sam so that we can selflessly help others with only the best intentions. Although this thought process comes with great struggle I have felt it and hope that even in the darkest of times I am able to believe, truly believe that there is a purpose for all of the challenges we face and that there is a happy ending in sight.
Friday, February 6, 2009
Tuesday, January 20, 2009
Cord Blood Banking
Our family was featured in this weeks ViaCord news letter. Feel free to click on the link below to take a look for yourself.
http://www.viacord.com/cord-blood-news/article_1.html
http://www.viacord.com/cord-blood-news/article_1.html
Friday, January 16, 2009
The First Post for 2009
I know, I know... and it better be a good one.
So what's new... Well a lot actually. Scott and I are expecting another bambino. We are very excited. I was extremely ill for the past 17 weeks so that is one reason I have not been able to write. Its hard to think and write when your head is permanently attached to the toilet bowl. My poor husband has been such a champ in trying to take care of both me and Sam. Did I mention that when I use to get up for my 1am vomit attack my darling ever so caring husband put ear plugs in his ears and went back to sleep. G-d I love him...
I have also been working. I started teaching again this past Oct. and decided to do 2semesters in a row which has been very time consuming, but fun so I'm not complaining.
Sam has been great! He has had two small colds which he has been handling like a champ. He is continuing to develop and surprise us each and every day! He has a new thing he does where he pounces on us like Tiger. Its very cute, but not very safe for me as he is always aiming at my belly. Sam is already starting to beat up his little brother and he is not even born yet. And if Sam takes after me in that regard we are in BIG trouble... I tried to kill my little brother on several occasions when I was a little and a few times in recent years...
New Year's Pictures... Then and Now...
1-1-07
1-1-08
1-1-09
Sam is the youngest member of the Friar's Club.
Hanukkah... Sam made out like a bandit this year. All of his grandparents, aunts, uncles and cousins, spoiled him as usual.
Sam's Mimi and I cooked. She makes the best brisket and I make the best potato pancakes which make for the perfect Hanukkah meal. And we know where Popi's priorities lie (doesn't even look up to say cheese). I have no pictures of Sam lighting Hanukkah candles because our menorah broke. I really am so bad at being Jewish, but I am trying... My potato pancakes were made from scratch and remember I have been vomiting uncontrollably for the past 4 months so that has to count for something right???
Sam is standing at the couch all by himself... He really is doing so well. Better than I ever expected!
Sam is trying to comfort his mommy during her time of nausea...
Sam loves his bath. And he really does have the cutest tushy in the whole world!!!
So what's new... Well a lot actually. Scott and I are expecting another bambino. We are very excited. I was extremely ill for the past 17 weeks so that is one reason I have not been able to write. Its hard to think and write when your head is permanently attached to the toilet bowl. My poor husband has been such a champ in trying to take care of both me and Sam. Did I mention that when I use to get up for my 1am vomit attack my darling ever so caring husband put ear plugs in his ears and went back to sleep. G-d I love him...
I have also been working. I started teaching again this past Oct. and decided to do 2semesters in a row which has been very time consuming, but fun so I'm not complaining.
Sam has been great! He has had two small colds which he has been handling like a champ. He is continuing to develop and surprise us each and every day! He has a new thing he does where he pounces on us like Tiger. Its very cute, but not very safe for me as he is always aiming at my belly. Sam is already starting to beat up his little brother and he is not even born yet. And if Sam takes after me in that regard we are in BIG trouble... I tried to kill my little brother on several occasions when I was a little and a few times in recent years...
New Year's Pictures... Then and Now...
1-1-07
1-1-08
1-1-09
Sam is the youngest member of the Friar's Club.
Hanukkah... Sam made out like a bandit this year. All of his grandparents, aunts, uncles and cousins, spoiled him as usual.
Sam's Mimi and I cooked. She makes the best brisket and I make the best potato pancakes which make for the perfect Hanukkah meal. And we know where Popi's priorities lie (doesn't even look up to say cheese). I have no pictures of Sam lighting Hanukkah candles because our menorah broke. I really am so bad at being Jewish, but I am trying... My potato pancakes were made from scratch and remember I have been vomiting uncontrollably for the past 4 months so that has to count for something right???
Sam is standing at the couch all by himself... He really is doing so well. Better than I ever expected!
Sam is trying to comfort his mommy during her time of nausea...
Sam loves his bath. And he really does have the cutest tushy in the whole world!!!
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