Wednesday, December 24, 2008

Happy Holidays

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Wednesday, December 17, 2008

Uncle Richie...

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.


Wednesday, November 26, 2008

Traditions...

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.

Friday, October 31, 2008

The Real Halloween Pics

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.




Thursday, October 30, 2008

Monday, October 27, 2008

Has it been that long...

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...

Tuesday, October 7, 2008

Hippotherapy

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.
video

Friday, October 3, 2008

Who has the cutest tush and thighs...

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





Sam on Roshashana


Tuesday, September 23, 2008

No News is Good News...

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...

Tuesday, September 16, 2008

Wedding Pics

Look how snazzy..


Look how handsome...


Look how beautiful...


Look how relaxed...


Look how buzzed...


Look how pregnant...

Monday, September 15, 2008

Adam's Wedding...

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.

Wednesday, September 10, 2008

Speech

This speech is worth the time.

Saturday, September 6, 2008

Bridge Over Troubled Water...

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????

Tuesday, September 2, 2008

A Golden Weekend...

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!

Thursday, August 28, 2008

HELP!

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?????

Wednesday, August 20, 2008

Good news!

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.

Sunday, August 17, 2008

Happy Anniversary

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...





Friday, August 15, 2008

The week...

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!

 
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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!


Friday, August 8, 2008

A Day Late and a Dolla Short...

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!


Wednesday, August 6, 2008

RRRRRRRRRAMON

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.

Thursday, July 31, 2008

Sam is 2 today!

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.

Thursday, July 24, 2008

Long Time No Write...

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.

Tuesday, July 15, 2008

Quick Update

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 :)

Thursday, July 10, 2008

AHHHHHH!

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...

Thursday, July 3, 2008

Language Treatment 101

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...


And We're Back...

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

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.

Thursday, June 26, 2008

Road Trip!

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!

Wednesday, June 25, 2008

Check It Out!

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...

Tuesday, June 24, 2008

Sam's OT Session

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...


Friday, June 20, 2008

NICU

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.

Tuesday, June 17, 2008

I Did It!!!

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...

Wednesday, June 11, 2008

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

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...

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?

Thursday, June 5, 2008

Balance

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…?

Tuesday, May 27, 2008

Memorial Day!

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.


Tuesday, May 13, 2008

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

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

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.

Thursday, May 1, 2008

"It's all in the Cookie"

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!"

Monday, April 28, 2008

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

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.

Thursday, April 24, 2008

The Thinking Place




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...

Friday, April 18, 2008

Potpourri

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!

Tuesday, April 8, 2008

Your In The Right Place

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

Sunday, April 6, 2008

Information

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

Friday, March 28, 2008

Lost

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!

Tuesday, March 25, 2008

What's Next!

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/

Sunday, March 23, 2008

Correction...

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.

Friday, March 21, 2008

Home At Last!!!

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.

Thursday, March 20, 2008

Yeah We're Still Here

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 :)

Saturday, March 15, 2008

Hanging Tough...

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.

Tuesday, March 11, 2008

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

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.

Monday, March 10, 2008

OYE!

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!

Thursday, March 6, 2008

Update

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. :)

Wednesday, March 5, 2008

Pain, Pain, Go Away...

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.

Tuesday, March 4, 2008

Surgery

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.

Saturday, March 1, 2008

Scott's Pen

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.

Thursday, February 28, 2008

Please Help My Friend!

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

Wednesday, February 27, 2008

In the Waiting Room...

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?