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.
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...
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!
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!
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!
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.
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