In Through The Out Door

Scott's Letter to Sam

2010-11-22T12:36:00.001-08:00

I wish you could read this letter…
Words can not express how much I love you. You are the greatest thing in my life. Your strength, determination and smile are a source of inspiration. When I get tired or down, I look to you for that extra boost. I have had such wonderful experiences with you. Be it walking to get pizza and ices or taking you on those long walks on the boardwalk in Coney Island when you were only two years old. I loved those days and I love you every day more and more. I am so happy that now we go ice skating together or those drives to Nancy’s house on the weekend when you just listen to me talk about nonsense and yell at the other people on the road. I love that you look at me and smile and I smile right back knowing that we have something very special and we will continue to share more special times together for the rest of our lives.
I want to thank you for the gift you have given me and I only hope I can reciprocate although this will take me my entire life. So stand by me Sam, I promise to be with you.
Love Dad

Cord Blood Breakthroughs

2010-01-21T05:22:00.000-08:00

Check out this link for more info...

Cord Blood Breakthroughs

Keeping our fingers crossed!

Duke Part II

2010-01-19T11:06:00.000-08:00

Scott and I took Sam down to NC this past Monday for his second stem cell infusion at Duke. We are actually in the out patient suite now where Sam just received his second batch of stem cells. The entire experience seems less surreal than it did the first time we came down. Maybe because we've done it already or maybe because we are not as hopeful as we once were. A year and a half ago the possibilities for Sam's future development seemed so bright. He was not even 2 years old and we were still expecting that Sam would eat, walk, talk... Obviously we still hope that Sam can one day achieve all of the things that we probably take for granted, but as time moves along the inevitable continues to haunt us every single day.

We are hopeful that Sam will progress. He definitely has made some significant gains, but he still has such a long way to go. We pray that these cells will continue to give him what he needs to make his body work better.

In the meantime he got his smile back! At this point I really cannot ask for more!

Where Did Your Smile Go???

2010-01-11T10:23:00.001-08:00

Sam has not been himself for over a month now. He has been teething. He's been sick. He seems just overall weaker and disconnected. I can count on one hand the number of times he's smiled in the past month. Sam has also been whimpering a ton and just has this general "I give up" look on his face. We have taken him to every doctor. He has been poked prodded, bloods have been drawn twice... I want my baby back.

Next week we go to Duke for the rest of his stem cell infusion. I should be more excited but its hard for me to feel hopeful and excitement when all I feel is fear and anxiety.

Quicky

2009-12-10T05:36:00.000-08:00

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 :).

Slacker...

2009-12-07T16:25:00.000-08:00

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.

PROCRASTINATION!!!!!!

2009-09-16T09:04:00.000-07:00

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.

Sam's First Day of School!

2009-09-09T05:33:00.000-07:00

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

2009-09-09T05:17:00.000-07:00

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!

New Digs...

2009-08-24T05:07:00.000-07:00

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 ;).

Loooooooong Overdue

2009-08-21T12:39:00.000-07:00

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!!!!

Last Weekend in Brooklyn

2009-07-18T08:40:00.000-07:00

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….

Judah Shai Leshin

2009-06-22T17:44:00.000-07:00

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!

Grand Rounds

2009-05-28T00:45:00.000-07:00

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.

The Best Mother's Day Ever!!!

2009-05-11T13:00:00.000-07:00

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???

Happy Mother's Day….

2009-05-10T06:36:00.000-07:00

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

Over and Done!

2009-05-09T05:12:00.000-07:00

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!!!

What's New in Leshin Land

2009-05-06T06:27:00.000-07:00

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.

Hormones, Hormones, Hormones!

2009-04-02T11:43:00.000-07:00

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...

More Brianna Lynn Band Pics...

2009-03-20T12:40:00.000-07:00

Here she definitely looks like her Aunt Carrie...

She really is such a cute baby and of course I'm not biased or anything...

My Baby Brother Had a Baby!!!

2009-03-18T17:44:00.001-07:00

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!!!

Looking Good... Feeling Good...

2009-03-13T14:18:00.000-07:00

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!!!

911

2009-03-12T01:40:00.000-07:00

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...

Anybody Have a Gun...

2009-03-11T13:56:00.000-07:00

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!

Long but informative...

2009-03-10T10:04:00.000-07:00

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.

To Facebook or Not To Facebook...

2009-03-05T08:25:00.001-08:00

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...

Sick of Sick...

2009-03-01T15:07:00.000-08:00

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.

Me, Myself, & I

2009-02-20T06:52:00.001-08:00

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.

So Livingston It Is...

2009-02-20T05:02:00.000-08:00

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...

Jibjab

2009-02-17T12:13:00.001-08:00

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...

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At Peace and Humility

2009-02-10T04:52:00.000-08:00

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.

Twinkle, Twinkle...

2009-02-06T07:42:00.000-08:00

I am finally catching up with all of our videos.
This is from Oct. 2008

Make photo slide shows at www.OneTrueMedia.com

Cord Blood Banking

2009-01-20T05:16:00.000-08:00

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

The First Post for 2009

2009-01-16T13:28:00.000-08:00

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!!!

Happy Holidays

2008-12-24T09:24:00.001-08:00

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Uncle Richie...

2008-12-17T18:47:00.000-08:00

I started writing a post about Christmas. While I was writing I though it might be fun to post some old photos of my family celebrating Christmas through the years. During my photo excursion I came across pictures of my Uncle Richie that really just depicted exactly the person who he was. Today is my Uncle Richie's birthday (thanks for reminding me Andrea). He passed away almost 15 years ago and I still cannot believe that we have been without him for that long. He was an amazing father, uncle, friend, person. He always had a smile on his face and never seemed to have a worry in the world. If anyone knew how to enjoy life it certainly was him. Uncle Richie is my mother's brother and my father's best friend. When I was looking through all of these old pictures I came across a poem written about him that must have been read at his funeral. I don't know who wrote it... I'm sure one of my cousins will comment and tell us. Anyway this is the poem.

Richard G. Fioriello
I'm writing this as a tribute to a very special man, Richie, better known as Richie "Roast Beef," Dicky Boy", or just Richard Gerald Fioriello. No matter what name you knew him by he was the same person. A good hearted character who has touched more lives than any of us could ever have imagined. He will be deeply missed, but we are all very lucky to have our memories. He is in our hearts and in our minds, but most important in the memories each of us shared the most special times spent with him. When each of us think of him, I can guarantee one of the "F" words come to mind:
1-Family
2-Friends
3-Fishing
4-Food
5- and above all Firefighting
I have yet to figure out in which order they go, but that doesn't really matter they were what he lived for...
MAY HE REST IN PEACE
Amen
Happy Birthday Uncle Richie... You are thought about all the time.

Traditions...

2008-11-26T14:23:00.000-08:00

I tried to post this on Thanksgiving but Sam was having some trouble so I couldn't...

I find myself really missing my loved ones during the holiday season... I mostly miss my grandma Nettie... Thanksgiving really has not been the same for me since she had passed 3 years ago. When I was little Thanksgiving would be at Grandma's. It was THE BEST!!! I still can remember every single detail of what she made for our thanksgiving feast and believe me it was a feast... It was a true Sicilian thanksgiving and I have yet to have one better.

Nettie would start out with antipasto on the table. The antipasto consisted of hard chunks of provolone, sopressata(Italian hard salami), tons of olives that were generously sprinkled over 2 small silver trays of raw fennel, roasted peppers that she always made herself, marinated artichoke hearts, tomato and mozzarella balls, Italian marinated vegetable salad, stuffed mushrooms, and a ton of crusty fresh Italian bread. Now my family always got to Grandma's first so I always wanted to help. The house was small so all of the refrigerated items would be kept cold out on the porch...

If anyone dared open up one of her carefully Saran wrapped trays before she opened them up you would get whacked so hard on the knuckles with a wooden spoon that you would feel it for days. And of course this was never considered child abuse... Can you imagine if we did that now...

Next course always consisted of pasta, pasta and more pasta... Usually she would make baked macaroni, but through the years she would change it up a bit and make stuffed shells or manicotti (which she made from scratch). With the pasta was always meatballs, sausage, etc...

The main course of course you had the turkey (which I never ate), mashed sweet potatoes topped with marshmallows, mashed potatoes with mozzarella (you haven't lived unless you have tasted these and there was NEVER any left), stuffing (which was a sausage and rice stuffing), stuffed artichokes, cranberry sauce right out of the can, and gravy. No I didn't forget anything... there was never a green veggie served with the main course.

And then there was desert... My cousin Francis always made something and still does called a jello cake. Its really really good, but to be honest I only ever first tasted about 3 years ago and she has been making it for every single holiday since before I was born. Grandma always had roasted chestnuts and fruit on the table and a ton of assorted Italian pastries, pies, cheesecake and some sort of chocolate cake. It was gluttonous...

Holidays have been tough since we had Sam. We usually have them here because with his hectic medical schedule its just so much easier for us to be in the house. This year my parents decided to stay in Florida and we didn't want Sam to be around little kids because we have been having a tough fall/winter season so far. My dad's Aunt and Uncle who so conveniently live down the block invited us over to their apartment for Thanksgiving. My cousin Dorothy was there with her husband Roger and their daughter Samantha and son Aaron. We had such a lovely time and were so grateful to have spent Thanksgiving with family. I made the appetizer course which consisted of my grandmother's stuffed mushrooms and they came out EXACTLY like she use to make them. I was so proud of myself. While I was making them I could hear her telling me what to do and sure enough they tasted identical! My cousin Roger made the main course which was not traditional but delicious nonetheless. He made something called a chulent which is basically everything in one pot slowly cooked for about 24 hours. And my Aunt Sonia, who happens to be the world's greatest baker made some of the most delicious old school Jewish baked goods EVER! I have to learn... she is an amazing cook.

So that was our Thanksgiving and it was very nice. I will try and post more pictures soon and write more about what's going on over here.

The Real Halloween Pics

2008-10-31T12:43:00.000-07:00

Today we dressed Sam up as Clint Eastwood. Grandma Band made the costume herself, she is very creative. Sam really liked his costume and had fun strolling around the neighborhood.

Pre-Halloween pictures

2008-10-30T11:05:00.000-07:00

Has it been that long...

2008-10-27T18:20:00.000-07:00

I know, I know, I haven't written in a while, a long while. So what's new???

Sam - Sam has been sick 3 times so far this season with 2 ER visits. ER visits are never fun. One reason being if your in the ER with your baby then chances are he's in pretty bad shape and two, it just sucks being in the ER. It takes forever to get seen, get tests done, get them read, its uncomfortable, G-d only knows what the kid next to you has, etc... However... I was recently asked to join the Family Advisory Board at Maimonides Medical Center and since then we have been treated like VIPs which is nice. This past visit we had a private room with a flat screen TV. Yup in the ER... In a NYC hospital that is HUGE! Sam is on the mend now and seems to be doing much much better. But I have to say every single time my baby gets sick I get the same anxious feeling that I may lose him this time. You might think I'm crazy but the truth is Sam never gets a small cold. When Sam gets sick his lungs give out and he goes into major respiratory compromise which then leads to food intolerance which then leads to dehydration and so on and so forth... I went for 4 days straight with no sleep. I'm not talking an hour here or an hour there, I'm talking not a
f***ing wink for four days. People have tried to tell me to get some rest, but the truth is if my baby ain't breathing I ain't sleeping. Even if I wanted to sleep my mind would not let me.

Scott - Scott's hanging in there. He's been working very hard. In by 7am home by about 10pm. He's a good man to work so had for his family, we're proud of him.

Me - I was off from my course for about 3 weeks because of all the Jewish holidays but now I have class next Sunday and I just cannot get my brain together enough to work on my lecture...

Hippotherapy

2008-10-07T12:20:00.000-07:00

Scott and I recently started Sammy in Hippotherapy.

What is hippotherapy you say??? Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction.

Why the Horse you say??? The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.

And best of all its fun!!! I love horses I have been riding since I was about five and just adore it so to be able to engage Sam in an activity that I also love so much means a lot to me. Scott on the other hand... well let's just say that Scott doesn't like animals too much and he is also allergic to everything, but he's game for anything that will help Sam.

Who has the cutest tush and thighs...

2008-10-03T06:44:00.000-07:00

No, no not me... Sam!!!

Sam on Roshashana

No News is Good News...

2008-09-23T18:24:00.000-07:00

Everything is copacetic in Shmuel Dov land, thank G-d. Sam is now part of a research study that is being conducted by one of his pulmonologists. It is very interesting and I will post more about this later as I know the information will help a lot of our friends out there in cyberspace who have little guys like Sammy. Sam also started something called Hippo therapy which is a therapeutic type of horse back riding for children and adults with special needs. Sam likes it a lot.

Scott has been crazzzzzy busy at work as I am sure you can all imagine with the financial world crumbling to the ground. I have not seen him in the past 2 weeks except for on the weekend.

And me... Well,I have just been holding down the fort here in Bensonhurst... I started teaching again last Sunday. I am teaching a different class this semester and I have the same girls that I taught last year. This is their last semester. Some of them seemed happy to see me and some of them gave me the "oh know not her" look... Either way I am happy to be working again. I love teaching...

Wedding Pics

2008-09-16T07:17:00.000-07:00

Look how snazzy..

Look how handsome...

Look how beautiful...

Look how relaxed...

Look how buzzed...

Look how pregnant...

Adam's Wedding...

2008-09-15T14:00:00.000-07:00

Just a quick update. This past weekend my brother Adam and his fiance, Carrie, got married. The wedding was beautiful and everyone had a great time. Of course my camera died before the ceremony so I have very few pictures. When my brother gets back from his honeymoon I'll ask him to send me more so I can post them.

Speech

2008-09-10T04:04:00.000-07:00

This speech is worth the time.

Bridge Over Troubled Water...

2008-09-06T12:57:00.000-07:00

I don't know about anyone else but I happen to find music to be extremely healing, uplifting, mellowing, empowering, etc...

Sam is not doing well again, at first I thought it was probably a virus but now I am thinking maybe his feedings again. What else is new??? I can't even get into it right now or I might vomit. I am trying to concentrate on preparing for the grad course that I will be teaching in 2 weeks from (pause) tomorrow actually. Oh boy I better get crack-a-lackin... Anyway its a pretty sullen day, it's pouring, I'm depressed, Sam is in pain, and Scott is miserable. I'm sitting at my desk totally distracted and the only thing I can do is listen to Art Garfunkel belt out Bridge Over Troubled Water. I am the freaking Bridge Over Troubled Water minus the heroin (yes that's what this song is about). Quite honestly I'd rather be Mrs. Robinson.

The point is we have all been in this kind of mood before. So what song or music do you all listen to when you find yourself alone and sad during a tropical depression????

A Golden Weekend...

2008-09-02T11:51:00.000-07:00

We had a really tough summer to say the least. Unfortunately we didn't get to do all of the fun summer things we planned on doing because of Sam's issues. However, our very good friends the Goldens invited us to their family's beach house for Labor Day weekend. It was really beautiful. The weather was amazing, the house was gorgeous, the beach was calm and peaceful, Sam behaved somewhat and most of all we were in amazing company. Thank you so much Goldens for giving us some great summer 2008 memories. We had a blast!

The girls walking the babies down a scenic street on our way to the beach...

Ohm Shanti...

WATCH OUT MOLLY THE LONG ISLAND SOUND MONSTER IS GOING TO GET YOU! Oh wait that's just your dad... Sorry Evan.

Dana with her new little bundle Charlie. Sooooo cute!

HELP!

2008-08-28T08:28:00.000-07:00

As you might have read in past entries my brother's wedding is coming up this September. My mother and brother need to come up with a song to dance the mother and son dance to. Does anyone out there in cyberspace have any suggestions?????

Good news!

2008-08-20T13:54:00.000-07:00

I keep getting asked if the stem cells are working, are we seeing improvements, etc... Many of the families who have participated in stem cell infusion report certain degrees of success. Some have reported improvements within 5 days of receiving the stem cells and others have reported improvements in 3-6 months post stem cells. Of course no one can know for sure if it is the stem cells, or is it maturation, or is it all of the theraputic intervention, etc...

So what about Sam... Sam has had a very rough summer. He has not been tolerating his feeds at all and it has been torturous for Sam, Scott and myself. What does not tolerating feeds mean? It means that every time we have had to feed Sam which is every 2 hours 8 times a day (don't ask) he has screamed, retched, choked, turned blue, sweat, passed out, etc... We haven't exactly figured out the problem yet but we are on a very good road to success thanks to Sam's very patient GI and nutritionists (we are working with 3), other parents, our nurses, etc... So we changed Sam's formula and caloric in-take and he is a new child. Now that he is comfortable we can see a BIG difference in Sam's skills and so can everyone else. Every single one of Sam's doctors that we have seen in the past 4 weeks has noted something that they have never seen Sam do before. Sam's therapists and nurses also have noticed big differences and improvements in Sam's development.

For starters we are giving Sam tastes of baby food. Yup my son can swallow little little bits of baby food. Sam went from not being able to swallow his saliva to swallowing small tastes of baby food. We started out by coating the back of a spoon with a lollipop. Sam consistently swallowed after each spoon presentation. After we saw that Sam could swallow more consistently we decided it was time to bring him back to St. Jo's feeding and swallowing clinic. While there we sat in a room (me, Scott, and Sam) while the docotor and the speech-pathologist sat on the other side of a two-sided mirror and watched me feed my son. After watching me for about 5 minutes the doctor walked in with baby food and said it was time. Scott of course started crying. And sure enoough after a few tries Sam started swallowing small theraputic tastes of baby food.

Next thing, which I noticed about 2 weeks post stem cells, was that Sam started using his thumbs. Sam never had the ability to digitize any of his fingers. He moved his entire hand as a single entitiy. Now Sam has much more dexterity in his hands and he is able to manipulate objects in a much more functional way. For example, today Sam put a car shape knob puzzle piece into a puzzle ALL BY HIMSELF!

Sam also feels much stronger. When you pick Sam up you may feel like you are going to pull one of his arms out of its sockets because the ligaments are so loose due to his hypertonicity. Now when you pick Sam up he is much tighter and stronger. Sam is also independently pushing himself up into quadraped. AND today he commando crawled accross a 4 foot mat all by himslef.

All of these events took place within the past 2 weeks. In the past Sam has made small gains here and there. One month he might have made a cognitive gain, another month maybe a gross motor gain, another month maybe a receptive language gain. But never has Sam EVER done this many different things in 2 weeks. So I will leave the speculation up to you, stem cells, therapy, answered prayers, maturation, metaphysical intervention (I'll leave that one to another post)... Who knows. We have come a really long way, unfortunately our obstacles are far from over but we will look at every gain big or small as a miracle.

Happy Anniversary

2008-08-17T15:43:00.000-07:00

August 16, 2003 Scott and I got married at Temple Israel in Lawrence Long Island. Events leading up to that day were significant for The Blackout. Yup the big one that wiped out power up and down the east coast and part of the mid-west. I almost could not get my dress, couldn't get all of my day before bridal beauty treatments, Scott thought there would be no rack of lamb, we were a mess. In the end everything worked out and we had a blast... Now 5 years later we are still having a great time together despite our present circumstances. We both consider ourselves extremely lucky to have one another and of course to be parents to the best little boy in the entire world.

That was then...

This is now...

Last year for our anniversary Scott took me to The River Cafe in DUMBO. It was amazing. We decided to make River Cafe a tradition since it is now both mine and Scott's favorite resturant. See for yourself why...

The week...

2008-08-15T05:02:00.000-07:00

At home...
Sam has been uncomfortable over the past month or so due to feedings, teething, and getting a few colds. On this day I was trying to get him to smile. It worked.

At the beach...
Last weekend Scott and Sam were both sick. I know, lucky me... Sunday both my boys were feeling a little better so we decided to go to Coney Island and let Sam experience the ocean and the sand for the very first time. He really loved it!

Elmo makes house calls????
My brother forgot his only nephew's birthday. Way to go Uncle Adam! So in an effort to make it up to Sam, Uncle Adam and soon to be Aunt Carrie (yes Adam's fiance's name is Carrie too) sent an Elmo to the house to sing happy birthday and bring balloons. Thanks Uncle Adam and Aunt Carrie!

A Day Late and a Dolla Short...

2008-08-08T04:18:00.000-07:00

Yesterday my little brother Adam turned 29 years old. Its very scary to think of my little brother as an adult let alone MARRIED!!!! Yup he is finally tying the knot September 13Th. I wish I can say that I was always the caring and nurturing big sister that was excited about teaching my little brother new things and showering him with lots of love. Nope that wasn't me. I was more like a hazer at a college fraternity. And the hazing period lasted from the time my brother was born until about, well its still going on. Happy Birthday Adam! I hope this is a great year for you!

RRRRRRRRRAMON

2008-08-06T07:05:00.000-07:00

I was finally able to download little snip its of Sam doing Cuevas MEDEK Exercises (CME) with Ramon Cuevas, creator of CME. Sam first started doing CME in July, 07. We first worked with Ramon in November, 07. This video was taken this past July post stem cell infusion. I am not insinuating that the stem cells helped Sam with some of these exercises I am just making a statement for my own tracking purposes.

Photo and video editing at www.OneTrueMedia.com

Sam is 2 today!

2008-07-31T05:29:00.000-07:00

Today is Sam's 2nd birthday. It is hard to believe that 2 years have gone by already. The expectations I had for my son certainly exceed the reality of where he is today. There are many many things that we are thankful for. Sam is able to go for very very long periods of time without suctioning. He is laughing more, playing more, moving more, he is sitting up independently. At this point I would have hoped that Sam would be eating even small amounts by mouth, crawling, babbling, etc... I would have hoped that at this time Sam would be fed 4 times a day by his tube without pain or discomfort. We are still trying to get to the bottom of Sam's feeding issues. We are still running every single day to doctors and therapists trying to find the best way possible to make Sam comfortable. We even had to cancel Sam's birthday party because he was in such distress when we fed him.

Yesterday we were at the hospital with Sam's GI doing an upper GI series and taking bloods. Today we are seeing a new neurologist to rule out other possible etiologies behind this feeding issue. So wish us luck and I will keep everyone posted via blog postings. I also apologize for not returning calls and talking on the phone but I hardly have the strength to keep running with Sam like this. I wish I could be more of a friend, a daughter, a sister, wife, etc... Right now I only have enough energy to be a mother. In the meantime here is a montage that I created in a very short time. I wish it was more creative but this is Sam over the past 2 years.

Make video montages at www.OneTrueMedia.com

Long Time No Write...

2008-07-24T18:30:00.001-07:00

I have been meaning to download video of Sam and Ramon but we have just been so preoccupied here with Sam. Sam really has not been doing well digestively at all. We think he has something called "dumping syndrome." And no Evan and Eric this is not a "Leshin" thing. It basically means that Sam's body is not digesting his food properly which accounts for his weight loss, constant retching, and fatigue. We are not 100% sure but we are trying to work it out which is pretty time consuming and exhausting on Sam's part more than ours. It is going to take some time to get Sam comfortable again as we have to go through a trial and error period of figuring out what course of action to take. Its all very confusing and I know I am not being that clear. WHen we know more of what is going on with Sam we will let everyone know. In the meantime please keep Sam in your prayers. Thanks so much.

Quick Update

2008-07-15T05:53:00.000-07:00

So far we have had 5 out of 9 sessions with Ramon. We lost one due to Sam getting a cold. Sam was really tough the first 2 sessions but the last 3 sessions he did really really well. Not sure if it has to do with the stem cells or just the extra therapy. Ramon was very delighted to see how quickly Sam progressed. I will post some video soon.

What else...
Sam is entering the terrible twos. He has been tantruming and has been really moody lately. I don't want to cough it up to age as Sam has so many other things that could be going on that are making him miserable. He is teething pretty badly and he is not tolerating his feeds that well. Sam is constantly retching which causes him so much discomfort as well. Its a pretty scary sight to watch. He also lost a pound in the last month which has gotten us very worried. We are going to the GI next week to see if we can get some answers. When I spoke to the doctor last night he entertained the idea of replacing the g-tube with the G-Jtube again... When you have a g-j tube you have to feed continuously throughout the day. The more I thin about it that really isn't such a great idea because Sam is moving so much. He will definitely choke himself to death with that stupid long tube that he will be connected to all day. So I think the g-j is out of the question. We will see... Please pray for some weight gain and good digestion. We truly are so grateful for everyone's thoughts nd prayers. BELIEVE me they do work! Thanks so much :)

AHHHHHH!

2008-07-10T04:36:00.000-07:00

Ramon Cuevas is in from Chile. We had several appointments to see him starting yesterday. Sam is of course sick at the moment. We did get one session in yesterday but had to cancel for today. I hope to god that Sam gets better quick. He has a low fever and is very very congested, coughing, sneezing etc... We really need to get Sam in to see Ramon. Cuevas MEDEK Exercises is the new wave in PT and is amazing. Sam responds so well to Ramon's treatment. I am asking yet again to please please pray for Sam to get well ASAP. He really needs to see Ramon. And the marathon continues...

Language Treatment 101

2008-07-03T11:08:00.000-07:00

I took this on June 23rd. For all of you budding speech-language pathologists out there if you do not have bubbles in your toy bag go get some...

Make an on-line slideshow at www.OneTrueMedia.com

And We're Back...

2008-07-03T10:03:00.000-07:00

Mission accomplished. We had a fantastic trip. There is so much I want to say and share about this trip I really do not know where to start.

Sam - Sam did really really well in the car going and coming. He slept well for the most part and was in pretty good spirits for most of the trip.

Jeff - First of all I was humbled by the selflessness and kindness of our brother-in-law, Jeff, to take time out of his extremely busy work schedule to drive us down to NC. I thought for sure Scott and I would be fine going on our own, but Sam is a difficult baby to care for and requires a lot of hands. It would have been very stressful and difficult had Jeff not come. Jeff also happens to be an excellent driver. I am not the best passenger and get very nervous if anyone other than myself is driving. I have to say I was not the slightest bit nervous.

Scott - Scott had the difficult task of sitting in the back the entire time to care for Sam and he did an amazing job keeping Sam calm, safe and happy.

Me - And me... well I just did what I do best and that was taking care of everyone in the car... I played DJ, feeder, unwrapper, cleaner, trash person, entertainer, holder, etc... You know, its not easy being this perfect and wonderful.

NC - North Carolina is beautiful! The people are so friendly. I definitely understated that. The people are soooooooooooooooo friendly and kind and helpful. You couldn't help but smile all of the time no matter what else was going on in your head. We went to Duke University's campus which was gorgeous. Its a very nice place to visit.

The hospital - Duke Children's is a beautiful, warm and friendly place. We entered the hospital and had to go to the fourth floor. Scott and I started crying the second we walked through the door. I wasn't really sure why I was crying as I usually don't. Scott on the other hand cries if the wind blows in the wrong direction. He is very sensitive. We get up to the fourth floor and immediately we can see how sick the children are here. I got an overwhelming feeling of guilt. I know Sam deserves the world, but the truth is Sam is a stable healthy little boy. This procedure is not life and death for Sam. But for these other children it is. I couldn't help but think that we were possibly taking the spot of a child that needed stem cells more than Sam. It was very difficult for me to contend with this issue. As Scott and I sat in the waiting room we couldn't help but see a beautiful little girl probably about 8 or 9. She was totally bald and sitting next to her was her mother who had obviously shaved her head for her daughter. I was completely moved by this. I had to get up and walk away because I started crying again. When I thought of children with cancer in the past I always focused on the physical pain they must feel or the emotional pain of possibly not being able to live a long healthy life. I never thought for a second that a child might feel embarrassed or ashamed about their physical appearance. An adult maybe but never thought of a child in that regard. I continued to glance nonchalantly at this mother and daughter. You had to see the pain in this mother's eyes. Pain that is somewhat familiar to me. When her daughter looked at her, her eyes were bright and full of happiness, but the second her daughter focused on something else the mother just went back to her blank stare, so full of fear and emptiness.

Appointment 1 - The first appointment at Duke consisted of a typical check up, height, weight, history, blood work, etc... Ahh the blood work... Sam is a difficult stick. We usually have to go hunting for a NICU nurse to get bloods or insert an IV for Sam. His veins collapse very easily. Luckily they only had to stick him twice. After the first try they decided not to take any chances so they grabbed the best blood lab tech they had and sure enough we got our bloods. After the blood work we were sent on our way with an appointment to come back for the infusion the following day at 1pm. I was so impressed with how organized, sweet, and competent all of the staff working there was. Everyone from the receptionists to the doctors. I am embarrassed to say that you do not find that hospitality here in NY.

Appointment 2 - At 1pm we made our way back up to the fourth floor. They took us to the back immediately and put us in our own glass walled room in the out-patient hospital unit. Sam was the only healthy child there. Most of the children in this area were hooked up to IVs getting treatments. We were there from 1pm to 7:15pm. It took us 3 tries to get a vein for Sam. Finally, after the third try they got one in his foot. That was the most nerve wracking part of the day, then everything went very smoothly. Sam got his cells and then he was flushed with IV fluids and that was that.

June Allison If it weren't for June then appointments 1 & 2 would not have happened. June is an incredible person with the most delicious southern accent imaginable. She is Dr. Kurtzberg's nurse practitioner. I think Scott must have spoken with her about 1,000 times at least. She never seemed the slightest bit annoyed. If anything she was just so happy to get us down there. We really have a lot to thank June for.

Dr. Joanne Kurtzberg - Talk about a humbling experience. I am afraid to even write anything about this amazing women as I am not worthy to even pretend to understand a millionth of what she does. Dr. Kurtzberg is one of if not THE leading physician in stem cell research. She has already found cures and treatments using stem cells to fight all sorts of metabolic and systemic diseases. Dr. Kurtzberg is just as sweet and warm as everyone else we met in North Carolina. I couldn't believe how human and normal she was. Most doctors, especially world renowned doctors can be pretty arrogant and nasty. This women could have been Sam's aunt or our neighbor or something. She was kind and considerate. She answered all of our questions. Scott had brought her chocolate from a very good chocolatiere in NY. You had to see how this women lit up at the site of dark chocolate. We really liked her and her assistant June very much. We are so grateful that Sam had the opportunity to get an appointment. Stem cell re-infusion for children with CP is a very small fraction of what Dr. Kurtzberg does. Most of her patients are very ill and are getting infused with donor cells for life saving purposes. I think Sam may have been the 26th or 27th patient with CP to receive stem cell re infusion.

Thank you all so much for all of your thoughts and prayers they certainly worked. I know we don't get to call or write everyone as much as we would like but we are so excited and happy to hear from everyone always. We think of all of our family and friends all of the time and we certainly feel all of the positive energy everyone sends our way. All of your love goes such a long way. We feel it believe me. We could not run this marathon everyday if we did not have all of the support from our family and friends.

Papa

2008-07-03T06:58:00.000-07:00

Scott's Pen
6-21-08
Today I said goodbye to my papa. I do not believe I will see him again in this life. Before I said goodbye I asked everyone to leave the room so I could be alone with him. I held his hand and he grabbed me tight. He started to move his mouth but words did not come out. I looked into his eyes and knew what he was saying.

"Scotty boy... I am very proud of you.
You turned into a great man.
You got yourself a great girl.
I promise to look after Sam from up above.
I will pass my strength to him."

When I got to my grandparent's house a nurse there was talking to me and I was asking him some medical questions about my papa. He asked me how I know so much and I said that I have a son with CP. He replied "You never know what is behind someones smile."

I thought about my son and I looked at my Papa and thought to myself, "nothing but happiness". You will be missed papa. We love you.

Road Trip!

2008-06-26T05:40:00.000-07:00

As we get ready for one of the most exciting road trips of our entire lives I feel myself getting overwhelmingly stressed out about what we have to bring. We have to travel very very heavy with Sam. Just to share how heavy here is a list of some of the things we have to bring...
Suction machine (which we only use maybe 2-3 times a day now if that YAY!)
suction catheters
2 basins for the suction machine
extra tubing for the suction machine
Feeding pump
feeding bags
special fromula that can only be ordered
extra g-tube extension tubing
Extra G tube just in case Sam's pops out
Surgical lube
venting tubes
medical gloves
Syringes (5ml, 10 ml, 20 ml and 60 ml)
2x2 split gauze pads
Ointment for the g-tube site
O2 (just in case)
Pulse Oximeter
Prevacid
Nebulizer
pulmocort
atrovent
xoponex
astelin
vitamin
Plus all of the regular baby stuff one would need to travel with. Hmmmm wonder if am forgetting anything. Anyone have any ideas????

OK now Sam is going to be watching a ton of movies and we (Scott, me and Jeff) are going to be listening to music. I have started organizing my ipod into different travel mixes that we all might like. Now Scott and Jeff (our brother-in-law) are dorks so they may not like anything too cool lol.... Any suggestions of travel songs. Oh by the way the reason why Jeff is coming is Scott cannot drive 5 minutes without getting lost or falling asleep behind the wheel so Jeff will be there to help me drive, bring on some moral support, positive energy, and help out with whatever else we may need. He is such a trooper to offer to come. We love you Jeff... Thanks a bunch!

Check It Out!

2008-06-25T03:36:00.000-07:00

So Sam's girlfriend Amelia made her very first TV debut yesterday on Fox News yesterday morning. They showed Amelia, Nestor and Debbie at a therapy center that does very intense physical therapy with something called a therasuit. This is one of the new waves in physical therapy and one that has been helping children with all kinds of motoric impairments make miraculous strides. They also showed Amelia and Debbie in a hyperbaric chamber. A hyperbaric chamber is the medical use of oxygen at a higher than atmospheric pressure which in theory can help children with CP because the 02 given this way is said to increase brain cell activity. Amelia has made some great gains since starting this program. She has been there for almost a month and her last day I believe is this friday. Check it out, its really cool.

OK I am having trouble pasting the link for some ridiculous reason. Go to Sam's friends on the right side of the page and click on Amelia...

Sam's OT Session

2008-06-24T08:52:00.000-07:00

I have been recording a lot of Sam's therapy sessions since he started early Intervention almost 2 years ago. Now that Duke is coming up really quick (1 week from today)we have been taping more frequently to see if we can track his progress pre and post stem cell infusion. This is a video from one of Sam's occupational therapy sessions with Keith. Thank g-d Keith loves Sam because he hates dealing with me as I am one of the biggest PIAs ever. Keith happens to be an AMAZING OT and we feel very very lucky to have him working with Sam.

In this clip Keith is working on building Sam's upper body strength. Sam has a difficult time bearing weight through his arms but he tries so hard and is such a sport about participating in all of his therapy. Sometimes Sam needs a little pep talk from mama to complete a task. See for yourselves...

Make an on-line slide show at www.OneTrueMedia.com

NICU

2008-06-20T12:24:00.000-07:00

This is a blog that I cut and pasted off of our friends Jason and Val's blog. I have a link to their blog on my main page "Tyler." I was apalled at the comments that were written regarding this article. Some people can be so heartless and could care less about others misfortune until of course it happens to them. Feel free to check out Jason and Val's blog as they have the link to the article along with a link to the comments. http://jasonandval.blogspot.com/2008/06/million-dollar-babies.html
Million Dollar Babies
In this week's Business Week there is an interesting article on the cost of saving preemies in the US. It says that $26 billion a year are spent for NICUs to save the lives of preemies (those born less than 37 weeks), which account for about 13% of all births. Of course, this story hits home for us since we've gone through a pretty rough course with Tyler over the past 2 years--and counting.

What's interesting are the comments on the article, especially those arguing that the money can be better spent on saving less critically ill children (i.e., that it's better to spend the money to save 10 lives than to save one), or that parents should let preemies go because they are suffering and won't have "quality of life." I'd like to see if these people still think that if this situation ever happens to them. It's easy to judge from afar, but don't pass judgement unless you've walked a mile in my shoes.

I Did It!!!

2008-06-17T17:38:00.001-07:00

I just changed Scott's cell phone ring. It is freaking hysterical. Probably sooooo inappropriate for the corporate world but oh well... I changed the ring to "Push It" Salt -n- Peppa style... Oh man he is going to be so embarrassed. Maybe he will comment after his phone rings while he's at work. We shall see...

WE GOT THE DATE!!!!!!!!!!!!!!!!!!!!!!!

2008-06-11T13:53:00.001-07:00

We got the date for DUKE!!!!!!!! Words cannot even express the amount of joy that I feel right now. We are going, we are really really going. The date is July 1st! Please pray that Sam stays healthy and we get down there safely. OK, so now that we have the date we are going into lock down mode. No one is allowed to come and visit until after we get back. As for the therapists... If you see a child that you even think may be sick stay away from us please. Thank you so much everyone for all of your support, thoughts and prayers. More on this later...

My Poor Husband...

2008-06-11T13:14:00.000-07:00

In my last post I mentioned that I love to annoy people just for my own entertainment purposes, but let's be honest, other people think some of the things I do are pretty damn funny. My most favorite person to annoy is Scott. Example... Scott is a technological moron. He cannot even work the remote on our DVD player let alone change his ring tones on his cell phone. So for fun I change his ring tones behind his back. I usually put a ridiculous song on that would really embarrass him. Scott usually charges his cell phone at work and leaves it on his desk all day including when he has to leave his desk. The last song I put on his phone was "My Humps." His office still makes fun of him every time the phone rings. I want to put another song on but I am having trouble thinking of something really funny. Anyone have any thoughts on the topic?

Balance

2008-06-05T04:46:00.000-07:00

How does one balance all the different aspects of their lives?

I look back at the person that I once was. I look far, far back to the toddler Carrie (yes my memory is very long and precise), the child Carrie, the adolescent Carrie, the teenage Carrie (god help my parents), the young adult Carrie, and now the mommy Carrie. So have I changed? Have any of you really changed? Do we want to? Many people might say that I really haven't changed. I look at myself, and think "boy I really haven't changed!" I am still a great person, a funny person, a vain person, can still get my BITCH hat on, still have a temper, still have no patience for stupidity (including my own at times), still caring, and passionate, spiritual, emotional, strong, loud, inappropriate/annoying (just to see how others react for my own entertainment purposes only), determined, generous, incredibly thoughtful, realistic, and loyal.

I use all of these attributes god gave me and I basically... well just live. Now throw in a major life altering traumatic event and try to keep balanced. I hate that I keep talking about how hard life is for us, but it is HARD! I know life is all just how you look at it. I try and convince myself every day that it's not hard it just is what it is. And maybe Sam's care is not that "hard" anymore because you get use to it. And maybe learning to live with the fact that my baby may never do this and that is not that "hard" anymore (doesn't mean it doesn't hurt) but you get use to it and that becomes OK too. You learn to accept certain things. But... what I do find so hard is trying to balance every aspect of my life each and every day, and trust me it is a constant struggle.

Making decisions about when, why, what, and how to do things and knowing the ramifications if you are wrong kills me. Knowing when to be kind, assertive, curt, playful, etc. with all of the people I have to deal with on a daily basis just throws me into a gigantic tornado where I just want to yell STOP! Having to balance the feelings I feel, my emotions and at the same time keep my cool for my son and those around me and also being careful not to step on toes or hurt any one's feelings is just beyond exhausting...(sigh).

Example... Here comes the roller coaster again... Yesterday Sam had a follow-up eye doctor appointment. Before I even stepped into the day I knew this appointment was not going to be good. The doctor is wonderful and we didn't have to wait, not even for a minute. We were in and out of there within 1/2 hour. So within that 1/2 hour it was determined that Sam has a drift in his left eye which can lead to blindness in that eye if we don't patch his right eye two hours a day. And even that may not be enough to fix the problem. Imagine the enormous pit in my stomach at the thought of the slightest possibility that my child, on top of EVERYTHING else mind you, may lose his sight out of his left eye. Of course I was on the verge of tears but I'd never cry, at least not in front of anyone. So here I am with baby and nurse in tow my mother waiting in the car, plop Sam into the car seat, put on his eye patch, trying to keep my cool, all the while the nurse is saying we should wait until we get home for the eye patch about 10 different implicit ways, my mother asking me twice what happened in the doctor's office, me saying don't worry about it it doesn't matter, then getting a "thanks a lot Ca" because I obviously offended her. All the while I am trying to keep it in the breath and then I got one more annoying comment and finally SNAPPED! I said something nasty to my mother; she got mad at me and stayed that way for a few hours. I can't say I blame her because when the bitch comes out everyone get on their thickest armor. I can be absolutely scary or at least stick the knife in and turn it in just the right way. I don't mean to be this way. I don't want to be mean. I want to be mellow and kind. I am sick of fighting the battle of the everyday maybe you should do it this way versus that way. I wish I could just tune everyone out and not care how many times things are said that bother me.

My question is when is enough enough? How many times do I have to say, "I'd rather not talk about this now, or I am not comfortable with this, or I would prefer if we did it this way." My limit is 3 times. You get 3, everyone out there gets three. If I have to repeat myself to the same person 3 times, well run. If you ask me three times, run. If you bombard me with 3 things when I am already overwhelmed, run. My limit is 3. In this I have changed. My limit use to be 2. I would grow impatient after 2. I honestly would like there to be no number. I would LOVE it if I had the power and the mental where with all to just let it slide…

I have asked many parents in my situation what it is they do. You know, how do they react to those who have the best intentions of course but are adding a little bit too much to the plate at the time and do not get the point after the first few times that they say back off for now. Please do not get me wrong. My intention was not to single out my mom or my nurse. Both are AWESOME and only have the absolute best intentions for Sam and myself. But in my specific situation I am constantly walking on the edge of a very steep cliff. My nerves are shot. So anyone and everyone on any given day could really push me over that edge without even realizing what they are doing. I know we can't control others, only ourselves. So I am asking for advice. What would you do if you were constantly being bombarded? Is there really a nice way of saying fuck off? I dunno, anyone care to give it a whirl? How do you balance being kind, tough, assertive, etc…?

Memorial Day!

2008-05-27T07:05:00.000-07:00

Memorial Day was one of the best days we have had in a while. Sam has had some issues with feeding which has really gotten Scott and I down. However... Sam has been making some gross motor gains which have made us very proud. He is trying to crawl using his head as a fifth appendage and he has actually moved forward a bit. But the biggest thing Sam has done was push himself to sitting all by himself. He did this about 7 times yesterday!!! This is a HUGE milestone and one that is indicative of a prognosis that leads to one day being able to walk. Some of the CP scales and research state that if a child can push to sitting independently before the age of 2 there is a 90% chance that child will be an independent walker.

We were so happy that this very special occasion was shared by my dad, who I was on the phone with the first time this happened yesterday morning. I think I blew out his ear drum. Sorry pop... Then our friends Nicole, Jack, Nicole, and Eric came and got to witness for themselves in person. We all had a great day as Sam once again was able to shine his light onto everyone he meets.

Take a look for yourselves to witness this amazing event.

Make video montages at www.OneTrueMedia.com

5 Things I Love About Being a Mother to Sam...

2008-05-13T18:11:00.000-07:00

5. I love that I have learned more in the past 21 months from my son than I have
ever learned from anyone in my whole entire life.
4. I love not taking for granted every little piece of my son's being.
3. I love how when I am holding Sam he will not go to anyone else.
2. I love that I can kiss him 1 million times in a minute and I still cannot get enough and no one can tell me to stop because he's mine!
1. I love the way Sam can look at me for what seems like hours and how I can just get completely lost in his big amazing eyes. When he does this any pain, issue, trouble, or concern, just melts away and there is just peace.

Regulations

2008-05-13T17:16:00.000-07:00

Have I ever mentioned that Sam is not a good sleeper. On top of all of our other trials and tribulations I can count on my fingers and toes the amount of times that Sam has slept straight through the night. I always thought this could be due to him being fed continuously throughout the night. Since Sam had his Nissen Fundoplication surgery we can now feed him more throughout the day and keep him off all feedings at night. Well we started not feeding him at night this past Sat. and he has been sleeping straight through the night beautifully. But now we are having trouble regulating his feeds during the day. We are getting there slowly but surely with lots of set backs and changes. Its all so frustrating and scary. I am such a bundle of nerves lately I don't know how anyone can stand me. To be honest its hard getting up in the morning knowing that on top of the usual every day battles I have yet another to contend with that so much of Sam's existence weighs in on. So how do I get up and move forward. I have no frigging idea... and this too shall pass...

P.S. No word from Duke yet, though I can just barely feel for the day when they call and set the date for us to go down there.

"It's all in the Cookie"

2008-05-01T06:58:00.001-07:00

Did I ever mention how much I HATE taking Sam for doctor's appointments??? He actually has been traveling quite well since we got The Leshin Family Truckster. But the doctor visits are just down right miserable and most of the time pretty negative experiences. So we went to this particular visit today and the doctor was really negative. According to her at this point Sam has not made any gains in the swallowing department and things don't look hopeful. Also did I mention that Sam is OFF continuous feeds. Yup you heard me. We can feed him 3 times a day and he has been doing great. Not only is he tolerating the feedings but he has never been more calm and happy and engaging even during PT and OT therapies. But according to this doctor Sam is extremely uncomfortable and I am nuts for feeding him the way I am. So I asked if she had any suggestion of what to do instead and guess what??? She didn't... OK thanks doc. After I left the appointment I felt awful, sick to my stomach, my whole world collapsing all around me, again. I just couldn't get it together the rest of the day. Scott came home and took over (what an amazing guy I have!). He even took the liberty to order us dinner - Chinese food. Guess what my fortune cookie said??? "The physician heals, nature makes well." Pretty apropo considering the day I had. But I have a better fortune, "The physician's a F#$%ing moron, and mama knows best!"

There's a Mouse in my House!!!!!!!

2008-04-28T04:32:00.000-07:00

So last night a get a phone call from my nurse... The same nurse that is sitting in Sam's room for the night. So you can only imagine what was going through my head when I saw her number come up on my caller ID. I pick up the phone and said what's wrong? She tells me a mouse ran out from behind Sam's crib under the door and down the stairs. So I immediately start SCREAMING! Scott jumps up and starts running in circles asking "What do I do, what do I do? So I said "How the F*%$# am I supposed to know, go get rid of it!" So at 10pm Scott's running around our living room/ kitchen area with a flashlight in one hand and a swiffer in the other. I don't know what he thought he was going to do with the swiffer? Clean the mouse maybe? All of a sudden the mouse comes running out from behind the couch and what does Scott do??? He runs away too. Way to go Scooter... There was no way I could help him. I was so freaked out! Instead, I took pictures of Scott running around the house trying to be our brave knight in shinning armour.

The Thinking Place

2008-04-24T04:31:00.000-07:00

Yesterday, I had a lot of thinking to do. I get distracted pretty easily with all of the goings on in my house so sometimes I need to step out and go somewhere to just think. When its nice I like to go the "The Thinking Place". Its at this particular place where everyone comes, big, small, thin, tall, Asian, Russian, Mexican, Indian... Alot of people come to this place to do the same thing. I never realized how many come to this place to well, just think. Here we all are just looking out at the water in silence just thinking. I felt a sense of peace that I haven't felt in a long long time. I even had many moments of clarity and direction to where we go from here.

Today I am going to visit a school for Sam in Edison, NJ. Yeah you heard me NJ. The Garden State, beautiful this time of year if traveling away from the turnpike. We are looking to move back to NJ because schools for kids with multiple disabilities are much better in NJ than in NY. I know from experience and this is only my opinion, but its a strong one that I have. I still have a few more schools to look into but this one I know has a very intensive program. We will see.

So the other question is where do we move to. Scott and I have been doing a lot of thinking and we know that we want to be close to friends and family. We also want to be a commutable distance to schools for Sam and the city for Scott. I think we are deciding on Holmdel???? Maybe. Yes cousin Scott that is only 10 minutes from you guys and you are part of the decision... As is all of our friends and family in the area. The thing is before we make that move I have to research a little more in terms of what can be available for Sam in the area. To be cont...

Potpourri

2008-04-18T11:43:00.000-07:00

I am sorry for not posting in so long. This week has been beyond busy, busy, busy...

Monday morning I woke up on a mission to make sure Duke University knows they are taking Sam in for Stem Cell infusion. I called only 30 times until I finally spoke to the person in charge. Sweet, sweet women, I kind of felt bad that she had to deal with me. I started off by telling her who I was as she has only spoken to my father-in-law and Scott. Then I start hysterical crying telling her that the fate of my son is in her hands, I'm hanging on by a thread PLEASE just give me a potential date that you are thinking about getting us in there. So she tells me hopefully sometime in August. OK (sigh), August is good, tomorrow is better but August is good, we'll take August.

The rest of the week consisted of a lot of running, Sam's therapy, planning and organizing for Passover.

Did I mention we got a new car??? Sam loves it, which is more than I can say for myself. I like it, but hmmmmmm.... not really what I thought I'd be driving EVER.
OK folks, are you ready to see it. Here it is The Leshin Family Truckster!

Oh and last weekend was Mama Leshin's 60Th Birthday party. It was a lot of fun and it felt great to get dressed up and go out. Scott and I became a little over zealous and drank too much, but it was nice.

And yes, I got fat. I am not ashamed to say that I gained 8 pounds being stuck in the hospital eating chopped liver and pastrami from 2nd ave Deli heheheh... Sooooo good YUM. And now I am on my diet health kick, yogurt, egg white omelets and lots of exercise. I am already down 3 pounds. Go me YAY!

Your In The Right Place

2008-04-08T16:56:00.000-07:00

I got bored with the scenary so I had to change things up a bit. I hope you like...

Information

2008-04-06T12:28:00.001-07:00

For all you parents out in cyberspace I have a GREAT website for you.Sam's pediatrician, Dr. Koplow, designed this website to answer and inform parents about every single thing possible regarding your children. Anything from breast feeding to potty training, to cancer to autism... EVERYTHING is on video taken from some of the top doctors in the country. Check it out... http://www.drmdk.com

Lost

2008-03-28T18:29:00.000-07:00

Who watches Lost? Anyone? Everyone? Scott and I can't have much of a life outside of our home. We cannot commit to certain TV series because of our day to day chaos. Soooo we started renting series through Netflix. AWESOME! We actually started out watching 24 as our friends Nestor and Debbie got us totally addicted. We watched all 6 seasons and loved them all. Once it ended Scott and I didn't know what to do with ourselves. So we started renting Lost. We are only on the first season, but my god is it good! Don't tell me anything but I have 2 questions for those of you that watch it: 1) Is the show actually still running, what season?
2) Does it stay this good for the next few seasons to come? If you haven't seen it I recommend that you start renting it from season one. It will change your life!

What's Next!

2008-03-25T05:04:00.000-07:00

SO now that we are home and settled in we are on to the next project. While we were in the hospital The Today Show did a segment on Cord Blood in-fusions with children with Cerebral Palsy. This has been around for a while but not in this country and not with a child's own cord blood. Duke University started doing this with a child's own cord blood. Of course as soon as we heard this and I mean with in the first 5 minutes Scott and his dad were on the phone with NBC, the reporter, the family they did the story on and Duke University. Everyone was so kind and accomodating especially the family. TO hear this news of a little boy with so many developmental delays (less than Sam) improve so much within the next 5 days after treatment added such a tremendous light of hope for us. I mean if it worked for this sweet little boy why can't it work for us too. Miracles happen everyday, why not to us. Even if this insfusion helps Sam swallow enough so that we don't have to worry about choking, or that it helps him move a little more, or talk, or wave, whatever... Anything will be a miracle. Of course I am hoping for The Cure! But I will take any improvements. The thing is we have nothing to loose. Scott and I decided to save the cord blood shortly after I became pregnant. If you can afford cable and a cell phone than you can afford to save your baby's cord blood. Regardless of what the research tells you about today, saving a child's cord blood can mean the difference between curing a devistating illness, paralysis, brain damage, etc... later in the future. The possibilities with cord blood in the future are endless.

SO the prayers for Sam certainly worked in the hospital and we are so grateful for all of them. Now I am asking to please pray that Duke even accepts us and that we will see tremendous improvement from this very safe non-invasive procedure. Here is the link to the story. http://www.msnbc.msn.com/id/23572206/

Correction...

2008-03-23T09:50:00.000-07:00

Sorry if I misinformed people. Sam definitely had a stricture/ blockage where formula could not pass despite the type it was. After the stricture had subsided Sam continued to have difficulty but of a different kind. He was more bloated and gassy and pretty much uncomfortable. At that point we were only feeding him 15ccs/hr. We needed to get him up to 30 in order to get home, but because of his discomfort we could not advance and this was on Wed. Thursday I spoke with another mom, whom I wrote about, that mentioned the difference in absorption between my formula (Peptamin Jr. unflavored) and the formula the hospital gave us (Peptamin Jr. vanilla flavored). Once I went home to get my formula which was right after I spoke to her Sam immediately began to tolerate 30 ccs over a 12 hour period. That is why we got to go home Friday. Had we have given him the unflavored formula starting Tues. we probably could have gotten him home Wed. night. Either way it all worked out and everything is fine.

Home At Last!!!

2008-03-21T13:10:00.000-07:00

Yup, we are HOME!!! So the reason it was taking so long to get Sam up to his nutrition mandate was because the formula the hospital was having us use (almost identical to our formula) was a bit different than the one we were using at home. Which means Sam was getting gassy and uncomfortable because his system wasn't digesting it properly. So how did I figure out that the key to getting us home earlier than Sat. or Sun depended on the formula? The doctors... no, the nurses...no, the nutritionist...no... The answer is another parent who has a son in a very similar situation and is so unbelievably knowledgeable. Who would have thought that one tiny little differnece in my son's formula would have had such an incredible impact on his system. When I told the doctors and nurses they said wow, never thought of that, it totally makes sense. So look we all learn something new every day. Glad to be home... Stay tuned for our next venture. We will let everyone know what is up our selves next for Sam. We we have an exact date then we will let everyone know what we are doing. Thanks you all so much for your prayers and well wishes! Happy Purim, Happy Easter.

Yeah We're Still Here

2008-03-20T16:24:00.000-07:00

We are still in the hospital (sigh...). Sam is being fed through his stomach which is very good news. We are up to 22mls/hr. In order for us to get home he needs to be on at least 30. Hopefully we will be home on Sat./Sun. Sam is in much better spirits. We got him to laugh a bunch today. He has regressed physically quite a bit but we hope that when we get home and therapy starts again he should be back to his good ole self in no time.

Things have been taking so much time in the hospital because I feel that most professionals do not understand Sam's system. To be honest knowing what I know, reaching out to other families with similar situations, and continuously brainstorming with the doctors has helped us get to this point. Its interesting how little most people know about the body still. Anyway, I can't get into all the particulars but at the very least we are on a good upward path right now.

Now about that roommate situation... Our last roommate that actually left today was such an amazing family. Mom was a Hasidic women and the son who was admitted was
12. Very sweet and quiet boy. Mom however, was so strong, bright, and fascinating. She is a single mother of 10! Yeah, 10! I know, these women are amazing. She stayed at the hospital all day with her son, went home every night to cook and clean for Purim and to care for her other children, and is now having 40 people at her home tonight to celebrate Purim. This women smiles all of the time and she was so good with Sam. She sang to him, prayed over him and when they left she gave Sam a gift which is now his new favorite toy. She said something that really impressed me. She was talking about her husband that passed away 5 years ago (her youngest child at the time only 11 months)and she said that when her children would come to her grieving about the loss of their father she would say something like this... Some families don't have a car, some not a home, some not a father, this is all part of life and we have to deal with it the best way we can, some days we may feel pain more than others but we just have to get on with it. And the way she said this was so as a matter of fact,like with a shoulder shrug made. I actually laughed out loud and she did too. The best was watching her watch TV. Not sure if you peeps in cyber space know this but most ultra Orthodox/ Hasidim homes do not have televisions. So to watch this very religious women watch television was one of the funniest things I have ever seen. And I am sure all of you are thinking what the hell could this women possibly be watching. Guess... Jerry Springer and any court show (Judge Judy etc...). I swear... When I questioned why are you watching this. She said she just loves the courts. I not sure if she understood that what she was watching is staged or not. She was sooooo into this with her face literally pressed up against the screen, you would have thought that the Lubavitcher Rabbi arose out of the grave or something she was so enamoured. I told her it was a good thing she didn't have television at home or else she would never be able to take care of her household.

So how is my husband doing through all of this.... Hmmmm.... Well, for those of you that know Scott I am sure you can only imagine the havoc he is causing all of the nursing staff and doctors. The nurses actually ask me ahead of time who is spending the night me or my husband. When I tell them me they clap and give a little yeah... Scott actually threatened to push the hospital bed against the door of the room if they came in to check on the baby again. Scott does not like being woken up and he gets really nasty when he is. Ahhhh the trials and tribulations of being in the hospital... Well I am hopeful to be home soon. I just got a call from Scott saying that Sam just pooped on his own, which is HUGE news. Thus his system is finally working. Thank g-d. Thanks for checking in and writing words of encouragement. Peace to everyone...

PS Since our nice roommates left please continue to pray we come home this weekend and no crackhead roommates. Thanks :)

Hanging Tough...

2008-03-15T08:02:00.000-07:00

We are still in the hospital :(. Sam is OK. He had the procedure to get his PIC line so he can be fed via IV. Sam seems to be in good spirits. Scott and I are keeping positive and happy as much as we can. Thank g-d we have a ton of support and help from family and friends. We have to wait and see what happens when Sam has another study to see the function of his upper GI tract. This will take place on Monday. Pray that the study goes well on Monday and that his stomach drains properly so that he can maintain nutrition through his G-tube and we can go home. In the meantime we are just keeping calm and hanging out in the hospital. Oh... Sam is off cootie patrol so we have to share our room now, booooooo... We had another family in our room for 2 nights. They were so nice and considerate so it was not bad at all. They left already and as of now we have the room to ourselves, but that can change any time now. So another prayer to ask the man upstairs if you don't mind... No crack head roommates please! Thanks.

The Good, The Bad, and the Not Too Great...

2008-03-11T16:09:00.000-07:00

Sooooo... Sam has a stricture or blockage, if you will. Not the worst thing in the world, but it certainly doesn't make things easy.
The good things are that Sam is no longer in pain, we are in our own room, Sam is healing nicely from the surgery and we are pretty sure that his current issues are not a motility problem or a shut down in his system. The bad things are that Sam may have to go into surgery again or if the stricture is just due to trama than Sam will heal on his own but this will take some time. The not so good things are that we are stuck at the hospital, Sam has to surgically get a PIC line put into his arm to feed him intravenously, and of course will need some sort of anesthesia for this. We are expecting that this will happen tomorrow. Again please pray that Sam's stricture will resolve on its own and that we get to go home soon. Thanks for checking in.

OYE!

2008-03-10T16:21:00.000-07:00

So we are still at the hospital... :( Sam is no longer in pain and he is healing quite well. The problem is that he is still unable to tolerate his feeds. Everytime we try and feed him into his stomach all contents come pouring out around the stoma. He really is unable to get any nutrition at all at this point. We started him on a new medication to get things moving a bit faster. Please keep fingers crossed that this works. By the way I have been unable to log into my e-mail for some stupid reason so if anyone has e-mailed me in the past week I haven't gotten the messages yet. I hope to talk to everyone soon... from home!

Update

2008-03-06T14:34:00.000-08:00

Sam is still in a lot of pain. In terms of his general health he is doing well, but he is going to need a little longer to heal. He is not tolerating being fed through his new stomach tube yet, which will prolong his hospital stay. To be honest Scott and I are fine with staying a little longer than expected as Sam is not ready nor are we ready to take him home yet. Sam is getting really great care, his nurses have been wonderful, and we have a private room with an extra bed, not that anyone can really sleep... but its still helpful. I will try and contiue to post updates when I can. Thanks for checking in. :)

Pain, Pain, Go Away...

2008-03-05T06:29:00.000-08:00

Sam's surgery went well. He is breathing on his own and is in a regular pediatric room. It is private for now as Sam still has a bacteria in his GI tract. This is complicating his healing course a little bit, but he should be fine. All of Sam's doctors are trying to give him the best course of treatment as possible. Sam's surgeon did a really great job as Sam was able to get his new tube placed in the same stoma as he had before. The worst part of this whole ordeal is that Sam is in a ton of pain. The docs are of course trying to keep him comfortable, but how comfortable can you get in a hospital with tubes and drains sticking out of your stomach. We should be home by Friday. Please continue to pray that everything goes smoothly and that Sam's pain subsides fast. Thanks so much.

Surgery

2008-03-04T05:35:00.000-08:00

Today is Sam's surgery. I am extremely stressed as there have been a few more hiccups in our plans and only time will tell if we are actually going to do the surgery today or not. If everyone can please hold their calls to us until later tonight or tomorrow morning it would be greatly appreciated. Scott and I are under an enormous amount of pressure some appropriate some totally unnecessary. We appreciate every one's prayers, concerns and well wishes. There are computers with Internet access that I can use in the hospital so I will post another message either tonight or tomorrow morning to inform everyone of Sam's progress. Thank you all again for all of your prayers and good wishes.

Scott's Pen

2008-03-01T04:18:00.000-08:00

Friday night and I am sitting at my computer tears running down my face searching for something on the Internet that can make things better (not porn), I need a more permanent wholesome fix for my son, wife and myself. Sometimes our situation hits me hard and fast and I just cry alone. Today my wife emailed me a listing of a beautiful home in Livingston, out of our price range given our circumstances. Desperation and fear consumes me. How am I going to keep going? What kind of life am I going to be able to provide my family? Can I give them everything they need and what exactly is that, health maybe, wealth maybe too?

32 years old in a few weeks and I feel old and tired. I used to wish for death but I don't any longer. I just wish for peace of mind, body and soul. Will it come???? Things have to get easier but tomorrow new challenges await. School, more therapy? FUCK. THIS SUCKS!!! No one should EVER have to think when looking at their son sleeping about surgery, breathing, walking, and talking. Please call me daddy. I should be looking at him thinking about all the good times we are going to have but the sad reality of it is that I don't know and not knowing is the scariest thing in the world. I know we all don’t know what tomorrow will bring but I do know that in a few hours from now, I will wake up hold my son and begin medication and therapy once again for another day.

My poor baby. What can he be thinking? I wish I could climb into his crib with him, hold him and tell him that everything will get better. WILL IT? This empty feeling is awful. His life is awful but am I right to say this. Sam does not know the difference. What kills me at times is when Carrie and I are eating lunch and he is lying on the floor looking at his. "What are mommy and daddy doing and why are they not with me". My heart breaks every day. I love you Sam and I love you Carrie. I promise to continue to fight for both of you every day and I will not rest until peace of mind, body and soul have been attained. Soon my love, soon.

Please Help My Friend!

2008-02-28T06:32:00.000-08:00

Hello everyone! I am once again coming to you asking for your help. I am not however coming on Samuel's behalf this time or at least this week. Let me share a little with you first.

I have met through an internet group for Moms with special needs children, a great friend. Her name is Susan and she has an adorable little girl named Reiley, this family lives in AZ. Reiley is like Sam in the fact that she has a lot of the same health problems, feeding, swallowing, developmental delays etc... and she is undiagnosed at this time. Reiley's biggest challenge is eating. She also has a feeding tube that gives her 90-100% of her nutrition. Reiley's doctors want to send her to VA and/or Ohio soon. There is a great feeding clinic and some doctors that may be able to FINALLY get her a diagnosis. For these kids having a diagnosis is crucial, you can not properly treat or even get the correct therapy if you do not know what you are fighting. Susan and I have made a great connection and have become great friends.

So why am I telling you about lil Miss Reiley?? Because as so many of you are aware of through our journey this can get costly and scary. Insurance does pay for the medical aspect but it does not help with gas, lodging, and food. Remember I said they live in AZ and are traveling to VA and OH. There is a medical fund set up for Reiley if you are able to help. There is also a couple of nice people that are donating a portion of sales from there business. These businesses are Tupperware and Brown Bag(adult items). I have links to these 2 pages if you are interested in buying something. I am adding a link at the end of this to Reiley's page so you can read more about this sweet little girl.
Please know that I am not one to ask my family and friends to make monetary donations for just anyone or anything, but I have made a strong connection with this family. If you are unable to donate then I am asking you to PLEASE pray for this family. Pray for wisdom to the doctors and for God to guide the specialists. Pray for strength as this is the hardest thing to go through as a parent. Thank you everyone for taking the time to read about Reiley.

http://reileylakemedicalfund.weebly.com/

www.brownbagparty.com/u/Terri/website/register.jsp

http://my2.tupperware.com/jshotwell

Love to all,
Carrie

In the Waiting Room...

2008-02-27T08:38:00.000-08:00

We took Sam for his pre-op appointment this morning. Usually when I have to take Sam anywhere I become overwhelmed with anxiety. Lately, I have been trying to practice something new. I say a mantra over and over in my head that goes something like this: "Sam is brave, Sam is strong, I am brave, I am strong, everything will be OK, its going to be a great day."

Now I knew today's appointment wasn't going to be fun as they needed to take blood from my little man, and he did cry and scream for quite some time. To be honest though, it really wasn't that bad. We went through the motions one breath at a time and before I knew it Sam fell asleep and we came home. All the while I continued to focus on the positives and tried to reflect positive energy on whoever I needed to make contact with. It worked pretty nicely as they took us in immediately, gave us an extra hand and did not keep us longer than necessary. It takes a lot of work and energy for me to be so positive especially in these types of stressful situations so to be honest I wasn't 100% light and fluffy.

After we came out of the pre-op room we had to wait to talk to anesthesia all the while Sam was screaming and choking with his feeding tube dangling and suction machine going... Anyway, almost everyone in the waiting room was so BLATANTLY staring at us. I don't normally care when people stare at us, I'm use to it, I know they are looking at how unbelievably beautiful I am ;) . But at that moment I had my bitch hat on and I sure enough let it loose. I turned and stared back, but this one particular family continued to stare, so I said really loud "Are you enjoying the show?" I mean, come on... How rude and inappropriate can some people be? I just couldn't help myself. What can I say, I am a work in progress. So what would any of you have done if you were in my situation?

Surgery Postponed

2008-02-22T14:26:00.000-08:00

Sam's surgery has been postponed for March 4th because he has a nasty gasto-intestinal bacteria infection. He probably will be fine by Tuesday, but all docs agree why take a chance and risk Sam getting sepsis or something. Just a small hiccup in our plan, not a big deal. So if everyone can just hold their prayers for March 4th that would be great. Remember, we want Sam to heal fast, 2 day hospital stay, and a private room.

Oh by the way did I tell everyone that we are going to win the lottery tonight. Yeah, well that's the plan... Mega Millions. $270,000,000... What would you do with all of that money????

Blood is Thicker than Water

2008-02-19T17:55:00.000-08:00

Anyone out there ever donate blood???? Today I went to NYU Hospital to donate blood for Sam's surgery. Chances are he won't need it but if he does he will have mine. I mean can you imagine your child needing a transfusion and getting some complete wack-a-doo's blood.

I am ashamed to admit that I never donated blood before. But I have to say its a bigger deal than what I once thought. First of all I had to go through this long arduous process of filling out a very detailed and personal questionnaire. How many sex partners have you had? Have you traveled to Europe in the last 3 years? Have you had sex in Europe in the last 3 years? Have you had sex with a man that has had sex with a man? Whoa, TMI...

So after this long application you go into a sound proof room with a blood lab tech who then asks the same exact questions that were on the questionaire again, along with a very painful finger prick and a collection of vitals. After the screening you go into another room and lay on a pseudo lounge chair with random strangers around you going through the same thing. But of course I have to be directly across from this really bizarre women who would not stop talking to me. She starts off by telling me how bad this is going to hurt, then she tells me they are going to stick me with a gigantic elephant needle and my arm is going to really sting, burn and throb.

Now, I NEVER cared about getting needles or going for blood work. The process just never phased me as a big deal. So I was like whatever to this person. But then I saw the needle... It was HUGE! And yes it really hurt going in and was very uncomfortable for the 20 minutes I had to lie there and deal with my blood being sucked out of me. So while I am laying like a pin cushion whack-a-doodle accross the way decides to tell me her entire life story and continues to ask me personal questions about why I was there, all the while yelling at the nurses to get her more fig newtons and juice.

So I try and position myself out of direct eye contact and shut my eyes to relax as I only had about 2 1/2 hrs of sleep the night before. As I shut my eyes the nurse runs over and starts shaking me asking me if I'm OK. So I said yeah I'm just trying to rest. So she says well you can't do that here we need to monitor you and make sure you do not pass out so keep your eyes open. I tried to assure her that I was just fine and that if I pass out I'd let her know. Of course this did not go over well so I had to deal with the blood donar commentator from accross the way. And guess what, no one gave me a cookie or juice. I could have walked out of there and passed out in the parking garage and no one would have known what was wrong.

Anyway, I was fine but for sure know what you are getting yourself into when you donate blood. Of course its the right thing to do, but mentally prepare yourself first.

Surgery

2008-02-15T06:29:00.000-08:00

Sam is scheduled for surgery on the 26th of February. He is getting his ear tubes replaced and a fundoplication, which is when they wrap the lower esophagus to narrow the opening from the stomach to the esophagus to prevent reflux. I feel good that this is the right thing for Sam, but of course I can't help but be overwhelmingly nervous about the whole thing. I HATE knowing what I know about hospitals. To be honest its not so much the surgery that makes me nervous its the aftermath. But I am going to try my hardest not to think about all of that yet. So if everyone can pray for a safe surgery, speedy recovery, short hospital stay, and a private room, that would be great. Thanks.

Who Wants to See Sam???

2008-02-06T14:05:00.001-08:00

Last week we went to United Cerebral Palsy to see if Sam would benefit from some new equipment. They have a share program in NYC and the people there are so kind and amazing. Our friend Debbie pushed us to go and take a look (thanks Deb!). Anyway, we got a piece of adaptive equipment called the Creeper Crawler that helps Sam crawl supported. He actually hates it right now. As you all can see he looks thrilled. But I'm sure in time when he understands the new freedom he will gain in the crawler he will like it.

Today during CME therapy, Yoni, one of Sam's PTs put Sam against the wall to stand. This is the first time ever Sam stood unassisted with his back against the wall. Again, Sam is not thrilled to have to work so hard, but one day he will understand.

The List

2008-01-30T11:07:00.000-08:00

Sam has been doing a bit better today. He actually smiled a bunch and was very playful. Whew... I almost put him out on the front stoop with a For Sale sign on his head. Yesterday Sam was out of control. I finally gave in about 5pm and gave him Tylenol. Sure enough 20 minutes later he was fine. Teething... perhaps. But should we really blame all the world's problems on teething. Who knows? I give up...

The treadmill... Ahhh the treadmill. What a metaphor for my life, how ironic. Running and running but never getting anywhere. Hugh... Anywho, I made my very amazing no one can beat it "run" mix. Oh yes I have been running and it feels wonderful. I think I may have dislocated my hip, but its all good. Who wants to see my product in the making. No no I don't mean my bottom. I'm talking about my mix. Here it is:

1.Shakedown Street - Can there really be a more uplifting song?
2. Beautiful - Moby
3.Crazy in Love - I took the Beyonce advice.
4.Elevation - I had to throw in a U2 song.
5.Armageddon It- I got the 90's hard rock vibe from Barb.
6. Uptight - Ya gotta love Stevie Wonder
7. Don't Leave me This Way - Thanks for the disco idea mom.
8. Ray of Light - Beth's rec of Madonna, thanx.
9. Pump up the Volume - Oh yes I did...
10.Native Love - The best early 80's club song that shows my age.
11. It Takes Two - Nothing like a little Rob Base to get my cheese on.
12. One Hand in My Pocket, acoustic version - Cool it down
13. In your Eyes, Jeffery Gains version
14. Heaven - Bryan Adams
15. Only Living Boy in NY...

Help me out...

2008-01-28T07:31:00.000-08:00

Updates:
Sam has been pretty sick. We spent the last week or so running back and forth to doctors, ER, calling 911... The whole bit. Sam is on another antibiotic and he seems to be doing somewhat better. He is a little mushy today but no fever. We are just trying to keep Sam comfortable and happy and hopefully get a few therapy sessions in this week.

Scott and I were able to get away for one night last Thursday for my B-day. We shopped, got massages, ate, and best of all slept!

My class is over. The girls did pretty well. I think I scared them with their pop quiz. Almost everyone Aced the final. I really had fun teaching. I already received e-mails and phone calls from some of the girls saying how much they miss me already. I think they are just buttering me up before I figure out their final grade. I am going to teach the same class again for the March semester. It should be a bit easier this time since most of the work is done.

OK so I need a little assistance... Today is actually my birthday and I decided that for the 31st year of my life I am going to start doing more for me. This morning I got up and jumped on the treadmill. It felt really good to exercise. This was the first time in over 2 years that I am doing something good for my body and my mind. The thing is I was only able to do a speed walk for about 1/2 an hour. My usual cardio regimen was a 10 min warm-up, 30-40min run, 10 min. cool down. So I need help with a music mix that can get me empowered and motivated enough to get to my goal.

I need you all out their in cyber space to suggest songs for my work-out mix.
So for the 10 min warm up I need some up-beat happy music to get me in the mood. For the run I need some hard core, booty smacking, bring it on tunes. And for the cool down something mellow to bring me to a good place so I can continue with my day. Let's see who comes through...

Somebody shoot me....PLEASE!!!

2008-01-13T17:54:00.000-08:00

Sam is sick again. We just put him to bed and he couldn't get comfortable because he had a temp of 101.3. What the F*&@!

The Giants won so Scott is in a good mood so that's good.

Oh and my class... No one got bonus points. I guess the girls did not do the assigned readings oops...

And me... I'm just happy, wouldn't you be.

A little of this and a little of that...

2008-01-11T06:55:00.000-08:00

Sam has made some nice progress over the past few months despite his chronic respiratory infections. He is moving around much more and is standing leaning against furniture and toys when he's put in the position. Actually today he did this for about 5 minutes without falling or losing his balance. He is also sitting and playing with toys when placed into sitting. He is trying to transfer himself into sitting and can do so with minimal assistance. Sam is also nodding his head for yes when asked do you want "this" or "more" of something. He is smiling more socially now and is really expressing himself vocally. As long as Sam stays healthy I believe he will continue to make progress on his own time of course.

Sam also had some fun visitors this week. His cousins Sal and Nicky came to play on tues. and his cousin Juliana came to play today. Of course I did not take one picture. The kids were great with Sam it was really cute to see. And Sam was just enamoured with all of them.

Scott... Not sure if I mentioned that Scott is really kicking major butt at work. He got a promotion for the New Year and Sam and I could not be more proud. Scott gets up at 6ish every morning gets into work by 7-7:30, does not get home until at least 7pm (lately its been more like 10 or 11), then wants to bathe Sam and put him to bed. And on the weekends all he wants to do is carryover all of Sam's therapy and play with his little boy. In addition to that he is always thanking me and telling me how wonderful I am to do what I do everyday. Amazing...

Me... Class is almost over YEAH......! Two more to go and the last class is the final. The amount of work one has to put into teaching a grad class is crazy. I feel like I'm back in grad school. However, this is more fun because I get to stand up and listen to myself talk for about 3 1/2 hours. The best part is my class has to listen to me too or they get a bad grade. Oh and their final (these poor girls, tut, tut, tut) is so hard, I almost feel bad for them. The girls really ticked me off last week because none of them read the assigned readings. So when this happens instead of having discussion I'm lecturing and answering the same ridiculous questions over and over again. "This is graduate school people you have to read, we don't just give out degrees here." So I am teaching the girls a little lesson this week. I am giving them a pop quiz based on the reading for this Sunday's class, all or nothing. If anyone gets all of the questions right they get 5 bonus points on their final if they get any wrong, NUTIN'.