Today we took Sam up to St. Joseph's Hospital for a test to see if he is swallowing, how he is swallowing and if he is doing it safely. The days leading up to this have been full of tremendous anxiety. I didn't even want to talk about it with anyone because the thought of what the test might reveal made me sick. All of us that have been working with Sam have suspected that he was swallowing but just for definite confirmation we really had to do this study. This study also gave us an idea of how we should proceed as far as treatment goes. So the results revealed Sam is DEFINITELY without question swallowing, but he is aspirating and he is having a tough time using his tongue to bring material towards the back of his mouth to swallow. So in other words we still have a very long road ahead of us before we can even think about taking Sam off of his feeding tube. However, these results also make it more promising that he will eventually get off of it some day. When Sam was first born he did not display any evidence of swallowing at all, he didn't even have the reflex. But we now know that he does, so we were pleased with the results.
This whole process was very scary for me. Thank god I had a lot of support with me today. Sam's speech pathologist that has been working soooooo hard with Sam joined us and so did Sam's nurse. It helped a great deal to have both of them there. What also helped a great deal was the staff at St. Jo's. I have to say I was so incredibly impressed with how helpful the entire staff at that facility was. Everyone from the valet parkers to the speech pathologists that conducted the study. Everyone was beyond kind.
So now with the new knowledge that we learned today I have more energy to keep trucking and doing what we have to do to give Sam the best shot he has.
P.S. Thanks for the great picture Mary!
16 comments:
I wish I wasn't such a sap but I am so I am sitting at my desk crying right now. This is greatest news I have heard in a LOOOONG time. It is great that we have been blessed with this development and like Carrie says all the more reason to keep truckin'. Sam is so strong and so is my wife. I thank g-d daily that I have them both. Keep going sweetheart you are the BEST!!!!!! You too JR!
I think Scott has said it all...well almost all...without Scott and his support both Carrie and Sam wouldnt be able to be where they are today!
So I raise my glass (its only water) and toast the three of you! To a future filled with love!
Hugs to you all
Alise
I don't even know what to say - but THANK YOU _ ! Someone up there is hearing our prayers and -for that I say thanks !
CARRIE & SCOTT -- you are both sooo amazing - and that right there is the best medicine for "our" little man - !
TEARS OF JOY !!!!!
XOXO
ANDI - DO !
So who isn't crying right now?
Frank and I are jumping up and down we can't control our happiness.
I know that Sam is with the best parents in the world.
I love you all.
kisses
love MOM
You Go Mr. Handsome You have so many people rooting for you!!!
[url=http://www.glitter-graphics.com][img]http://dl3.glitter-graphics.net/pub/556/556633xx237j30vn.gif[/img][/url]
YAHOO!
It didn't work!!! Its a smiley face graphic!
What great news...I know it will only get better...You two are wonderful parents & I know Sam is so blessed to have you both in his life...Love you all...xoxo
Jenny
Carrie the MBS really showed that it was all working. It is so exciting to be working with Sam. He has the cutest and best smile and I can surely identify with his love of the the small screen. His tolerance of oral torture is unbelievable and remarkable. Hurrah for Monday and St. Joseph's . I can believe that this (swallowing food) will happen and not by anything but hard and consistent work on a daily basis doing evrything we can think of. Carrie you were so brave to do the MBS, the MBS doesn't lie. I could not think about the results not coming out all right before , I just didn't think about it. That is a luxury as Sam's mother that you didn't have. It is exciting and a privilege to be connected to Sam and "the family". yours truly, your feeding therapist partner forever- Genie Rogers
Great News!!!
We all wish you a happy new year and most of all -- health -and progress with sweet Sam which his wonderful progress makes us all so happy.
Love to all
Irit
This is WONDERFUL news!! I love you Sam! -Auntie Kelly
I am so happy. This is HUGE!! And its just the beginning of the many advances he will continue to make. I love you guys.
That's great news! We'll probably do a MBS with Tyler again down the road too. So far we've only gotten him to take a couple of CCs before he gets too overwhelmed.
Oh my gosh! What amazing news! Nothing could make me happier right now. Happy New Year. This is the start of many good things to come!
Love, Nicole S.
YEAH YEAH AND MORE YEAH!
Fabulous news...a little good news is better than ANY bad news!
We love you guys!
B, B & A!
Great weekend. Sam is such a superstar. We visited Aunt Erica, Uncle Jeff and cousins Dylan and Avery. Sam had a great time with his cousins giving them high five and playing with their toys. Mada (nurse) also had a great time to seeing New Jersey and finally crossing the Verrazano. Looking forward to Thanksgiving. Holidays this year so far have been much better than last year. The anxiety is less and the food always gets better. Happy New Year to everyone and may this one be better than last and next be better than this. You get what I am saying.
Love,
Dad and Husband
Post a Comment