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Welcome to the Bob Blog. "Bob" is Sam's alter ego. Before Sam was born, Ben decided
his name should be Bob. (We should have known better than to ask, right?) And it stuck. As
Sam gets better and better, Ben calls him "Bob" a little less. We think when Sam wakes up, "Bob" will disappear completely
as far as Ben is concerned. As for the rest of us, well, Bob's a hard habit to break...
I'll try and keep everybody updated on Sam's progress, my thoughts, our daily ups and downs. It's tough sometimes,
and I don't do as well as I'd like.
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October 23, 2008
A Good Day at School
Well, I can't say enough good things about the sweet kids in Ben's class. I mentioned the other day that I was
going to take Sam in to introduce him and "explain" what I could, and it went very well.
The first thing the kids said about Sam: "He's so CUTE!!" They were sweet. They asked some questions, and
we talked quite a bit about... baseball! They all hope Sam keeps getting better, and were very nice to him.
We showed them how we feed him, and how he can (or can't) see, and some of the math cards he can see, and stuff like that.
We looked at baby pictures, some of which had Ben in them, and they thought that was pretty cool. We had a flashy keychain
for each one of them so they could see what kind of things we use for Sam's vision therapy.
All in all, it was a good day. Ben still wants me to bring Sam in to have lunch with him whenever we can, so I
guess it was a good thing overall.
October 21, 2008
Hopeful
Don't know why, but I'm feeling inexplicably hopeful. Sam is doing well - still can't pinpoint it, but he's doing
well. He won't let me do ABR on him, though. He refuses to lie on his back, and the exercises have to be done in a certain way to be effective.
I can make some changes to the process and do it while he's in his Bumbo chair, but as soon as I try to work on him, he tries
to hurl himself out of his seat. I don't know why - it's not a painful thing. He's just not having it at the moment.
Maybe it feels good and inspires him to move - or maybe he's just trying to push me over the edge.
I've been looking at G-therapy for a long time. Too long. There's a homeopathic/aryuvedic therapy in India that has been remarkable for some
kids with brain injuries. It's always been something I wanted to do for Sam, but things have conspired to keep us away
from it. (Not things, really, just money. If we had any, we'd have gone to India by now, for sure.)
The doctor in India treats many kids at his clinic for free; to ship the therapy to the US, or have it come via a parent who
is willing to bring it back to the US, costs about $2,000 for 6 months.
I have heard SUCH good reports from other parents, and such lamentation from those who waited (like we have) until they
could afford it. So, plow ahead we will.
He responds well to homeopathic treatment, and you know, he just deserves us to keep turning over stones, doesn't he?
The doctor in India posted this message recently to the g-therapy support group:
Dear Val, Julia Lang, Heather Webb, Hulet Smith, Balaji, Dr. Subbarao, Pam, Ganeshan, Kim, Majumdar,
Odonil, Rewankar, Swetlana, Shubhada, Patricia, Linda, Laura, Alexy, Mattie, Sophia and all children and Parents,
Greetings and many thanks for your emails. The above are just few of the many names in the
success of G Therapy journey, there are many more parents who have encouraged me in my struggle to help children, shown faith
and confidence in G Therapy.
In next few weeks I am going to post more such videos on my website. Here I must tell you about the tremandous
help given by my son Prasad and my son-in-law Dr. Upasani for renewing my website, and videos.
We are also working very hard since the last few months on a project to make G Therapy available
at a more affordable cost to parents, and also to make it available through easier distribution channels. My son Prasad has
very kindly offered his time for this task. The interests of parents and children are closest to our hearts and we are working
towards a solution, which - we target for in the next couple of months - could bring G Therapy to many more
children worldwide at an affordable cost. In the meantime, thank you very much for your support and patience.
Best wishes,
Dr. Oswal
Here is an absolutely astonishing video about a child with the same type of brain injury as Sam. It's video #6, about a child with a hypoxic injury.
So we're going to give it a go. I've always been afraid to start the therapy for Sam, have it do well, and then
not be able to afford to continue it, but if there's a likelihood it will be less expensive in the future, we'll go ahead
and start it somehow.
Okay, gotta go. I'm finally going in with Sam to Ben's school tomorrow (today?) to explain cerebral palsy.
Ugh. Not looking forward to it. But I have a plan, so it'll be okay. Kids are generally decent and kind,
although one or two has said some nasty things to Ben, which is why we're going to go in and try to alleviate the ignorance.
It's just that it's something I shouldn't be doing - I don't want to be the expert on this.
October 17, 2008
This morning, despite the fact that the rest of us were up too late watching that DEVASTATING mess of a baseball game,
Sam got up about 5 am. Not that unusual, but when I went in to check on him, he was just about out of his bed!
He has a side rail at the side of his bed and also at the bottom; the other side's against the wall, and the top is elevated,
so he never moves that way. He squirms and wiggles in his sleep, but usually just a bit to one side or the other.
Occasionally he'll be turned sideways. This morning, he was all the way at the foot of the bed, with both of his legs
over the bottom rail, bent at the knees!
Hmmmmmmm.
October 9, 2008
I can't say I really know what's going on, actually. Sam has been good, but then he's had some weird weekends where
I don't know what's happening.
Two weeks ago, on a Friday afternoon, Sam sneezed a few times and threw himself out of whack. Then he got gaspy,
gassy, miserable and stopped digesting his food. And water. It's a scary thing to see, because it looks like he
can't catch his breath, but that's not what's happening. I think it's a pain response, but it's just awful to see.
Once he falls asleep, he's fine, so I stay up through the night to get his food and fluids in him. (I know there are
days when "regular" kids don't feel like eating and it's okay. That doesn't apply to Sam - I can't just let it go.
He loses weight quickly, and won't make up for today's drop in calories by snacking on Snickers tomorrow.)
He slept Friday night (I didn't) and woke up okay-ish on Saturday. Then he sneezed again and fell to pieces.
Daniel (our chiropractor and the only doctor I can turn to whenever I need him) talked me through "rocking" Sam's ribs into
place to give him some piece. Sunday was slightly better, and Monday, we went to see Daniel and had a decent week.
Then Friday again, it started. It wasn't as bad this time, but still, it was a rocky weekend. Sunday night,
Sam had a SCREAMING temper tantrum, and after that, he seemed better. I mean REALLY better - more alert, more responsive,
more "here" and more at peace.
Yeah, I don't know either.
But somehow in all of that, for a couple of days, I had a renewed sense of hope that I haven't had in a long time, so
I figure there must be something good going on.
And as far as that goes, there was also a car wash in Baltimore last weekend to raise money for Sam's therapies!
Our fabulous Chrissy had another car wash, since last year's helped us so much, and raised over $1,000! That astonishes
me - I can't imagine in times like these that people are so willing to help out some little boy they don't know who is 1,000
miles away.
All of Sam's therapies cost so much money. It's just not right. We are supposed to be going to Montreal in
a few weeks, but that isn't going to happen. We'll shoot for April instead. I'm having such a hard time getting
our ABR hours in since Sam is going bonkers - he doesn't want to be still for it, and needs a lot of suctioning, so I don't
feel like I'm getting any "quality" time in, which stinks. There's a machine that does the exercises at night, but we
can't afford to get that right now, either. Arrgh.
Since I'm depressing myself, I think I'd better go. I'll check in soon. And I have to take some pictures,
too. Sam, Ben and Tim are all sporting "Rayhawks" since we are baseball folk and the Rays are going to win the World Series.
September 24, 2008
So where was I? I didn't mean to slip off the face of the earth again, but nobody's been feeling too great around
here lately. But I think we're probably okay now - as okay as we get, anyway.
Sam's been...well, weird. Yelling and screaming and grouchy as all get out. I THINK it's a good thing.
I THINK the new experiences, new connections, new feelings that he's having (as he claws his way out of that fog he's in)
must be scary and unsettling. When I hold him sometimes, it just seems like he's communicating more somehow, which is
hard to explain.
And on that note, we had a REALLY good revelation last week. Barbara, our fantastic vision therapist, was here
working with Sam, and she was showing him a book he likes with shiny animals in it. Then she asked him how many giraffes
were on the page, how many zebras, etc. and held up two cards so he could choose the right answer. He got it right!
They only did it for the last few minutes of her visit, but he got 1, 2, and 3 right, very quickly. He missed on 4,
but the option was a 4 of a 9 to choose from, so I'm letting him slide on that one since they look so much alike.
But he can do it. A new way of communicating. He was either thrusting his head at the card, or he was lifting
his arm, as if to point at it.
As exciting as that was, it took a few days to really sink in that this could unlock him even more. We can give
him more choices to make himself known and let him make decisions and have some control of his life. Man. Just
think about that. Makes my head explode.
We're still doing ABR and I think we're getting some good results, although it is a slow process. Since he's seeing
more now, and ABR requires him to be on his back quite a bit, I've been trying to find some sort of projector so I can show
him images on the ceiling. That way he'll be less restless and I can work on him longer. I'm not having any luck
- the ones made for infants are too dim, and I'm not finding anything that seems to work too well.
As a matter of fact, I have to get back to it now. There are some exercises that I have to do while he's asleep
- he has to be lying flat on his side, and since I can't do that when he's being fed because of reflux, I have to wait until
the wee hours.
Thanks for checking in. I'll try to get back on track.
September 7, 2008
Sleeping and tossing and turning
Well oh my goodness I can't believe I have neglected to fill everyone in on what is probably the most significant change
in our household in a very long time. As most of you know, Sam has never slept more than two feet away from me, pretty
much since he was born. There were a few nights that we had nursing, and some nights in the hospital that I trusted
their nurses enough to come home for the night (not many, and when I did come home, I called a LOT), but generally, I've been
with him. For a few years, I slept on a 3-inch foam mat on the floor next to his crib. Then I would move his crib
into the living room, and sleep on the couch next to it. Then we moved the crib next to our bedroom door, where I slept
with the bed almost at the door so I was practically nose to nose with him.
(Please know I am using the term "slept" very loosely. I don't think I've actually done that in a very long time.)
After that, my dad built Sam a bed out of a dining room table - seriously! - and we put a mat on top of it, so he could
sleep smackdab next to me, but I could sleep in my actual bed. We had his bed next to our bed, so I could tend
to him in the night, and then in the morning I "crab-walked" out of bed.
And here we are. The day before Sam's birthday, I moved his bed into Ben's room - where he should have been
all along, if our life had gone according to plan. Ben couldn't have been happier - I swear I have
been astonished all along at the fact that there is no resentment or jealousy there. If anyone has a reason
to be jealous of all the attention his brother gets, it's Ben. We work hard not to EVER say "we can't because of Sam"
but he knows that it is so often the case. But he adores Sam, wants to take care of him, wants to show him off - couldn't
be prouder.
But I ramble. (And I intend to ramble more, actually.) Sam actually moves quite a bit in his sleep - his
eyes shut tightly, he squirms and wiggles, stretches and rolls - I really truly hate for him to wake up and lose that
freedom.
Our house is very small, and Sam is actually not more than 6 feet away from me now - he's directly on the other side
of the wall that his bed was against before. And the pulse-oximeter monitor that is attached to his toe at night has
a long enough lead that the actual monitor is still in our room, so we know if his oxygen level drops or heartrate skyrockets.
Haven't you always thought how UNBELIEVABLY GOOD it feels to stretch and move and get all the kinks out and strech some
more??? Kills me that he can't get that whenever he wants. Kills me.
So to make a long story longer, Sam moved into Ben's room and it's been completely uneventful. YAY. Uneventful
is the favorite word of parents with special kids, I think. Sheesh - who wants to be normal, average, run of the mill,
blase? We do. I do. Desperately.
I don't know for sure that I get any more sleep than I ever did, because I get up every hour in the night anyway
to check on Sam. Sometimes I find him in awkward and uncomfortable positions that I could have prevented
if I had been right next to him, but I try to tell myself it's good for him to move and try to correct things like that.
And sometime's he covered in snot and angry, and I wonder what I was thinking.
But sometimes, SOMETIMES, I go in and find Ben has crawled into Sam's bed with him and is telilng him a story of some
sort, rubbing his head, showing him the stars on the ceiling.
And then - I get the slightest bit of peace and a glimpse of things as they should be. For just a brief
moment.
September 4, 2008
PRAYERS FOR JILLIE-BEAN
Many of you know that I would like to take Sam for a stem cell treatment in China for a month. Of course, Tim and
Ben would go along, like always, and since Tim lived in Hong Kong before and wants to go back, his arm is not hard to twist.
Our wonderful friend Tami has taken her daughter Jillian to China, and her husband and the rest of the family had to
stay back in the states in China. Imagine the STRENGTH it takes for Tami to do this for Jillie - to give her a chance
at something more - while maneuvering a foreign country and a whole pack of doctors at the same time.
Things have not been smooth, although they've been good. Please check in on Jillie's blog and send your prayers
for her and Tami. Tami would also appreciate a message - she's on the other side of the world, and support and prayers
matter so much.
Here's her blog:
Please check in on her when you can.
The dentist
So what else has happened? One very significant thing is that I FINALLY took Sam to the dentist. I "should"
have done it at least a year ago; kids really shouldn't wait until they're 4 to see a dentist. But 15 months ago, Sam
didn't have any teeth at all - they kept coming in, and then going back into his gums again and disappearing. So my
boy got to keep cutting the same teeth over and over! The only option we had heard for that was to cut his gums open
and YANK his teeth down. Seriously. Does anybody anywhere think that would be a decent thing to do for a child
who isn't eating by mouth anyway? Or any child, for that matter?
When we started seeing Dr Towle, he realized quickly that Sam's teeth weren't strong/hard enough to come through and
stay, so he told us about a homeopathic remedy (alternate calc phos and calc fluor) and that weekend, Sam's teeth came in
- 6 at a time. Made for misery for the two of us - his teeth hurt like crazy, and my thumb hurt from his gnawing on
it - but it was progress, and since then, he's gotten a mouthful of teeth that stay put.
I don't know if you can imagine the sinking my heart felt when discussing Sam's visit to the dentist. His mouth
hardly opens - it hangs open, and his jaw is retracting, but his mouth doesn't move freely. He can't respond to the
commands to move his jaw, open his mouth, spit, swallow, bite down on this, or any of the other delightful things we do at
the dentist. We took him to our family dentist - they already knew his story and I wouldn't have to tell it again, which
was a HUGE plus. (I couldn't hate that story more.) I took both boys together, for moral support for each other,
and it was a first visit for both, since Ben had been to a "Kid Dentist" (that we didn't much care for) in the past.
(He has terrible teeth.)
Well, can I say my boys are FABULOUS? Ben did great, and the hygienist was impressed, but I wasn't all that surprised.
He's a good kid and listens well. And Sam - well, I was stunned. I acted as the assistant to the hygienist, using
the suction, positioning Sam's head, blah blah blah, but he was bright-eyed, responsive, and let it all happen. He made
a couple of comments, but they weren't bad - he just had something to say. Many of his teeth had come in yellow; we
always assumed it was from antibiotics, but it was apparently tartar and she was able to get it all off - now he has pearly
whites.
I couldn't believe it - he was so good, and bright, and "there". Usually, when he meets a new doctor or is getting
something unpleasant done, he checks out - you can see it in his eyes. But he didn't this time. It was nice.
I needed a boost.
September 2, 2008
So where were we?
I know I'm lousy at keeping this updated, but with it being down for almost two months, I'm struggling to remember everything.
Well, we had Sam's birthday party, and it went well. I think. I tend to block things out when I'm stressed.
But, a wonderful thing happened, and our friends at church took over for us as far as the celebrating goes. Sheri and
Michelle asked if they could have Sam's birthday party on his actual birthday, on the night they usually have a children's
youth group activity. Normally, about 8-10 kids show up, but about 20 showed for Sam! So that was nice.
Sam wanted a spaceman party, so Tim and I got a bunch of stuff ahead of time, and on the actual night, we didn't have to do
too much. I wasn't in good shape - his birthday party was actually right at the time he was born, so I was just trying
to stay vertical.
A beautiful idea that Sheri and Michelle had was to have Sam come later than the rest of the kids, so the kids could
decorate. I thought that was wonderful - since Sam isn't able to really interact a whole lot with them, this helped
them connect with him better. I had asked that they be told not to shriek and scream when he got there, because that
would scare him, and they just generally yelled "happy birthday Sam" and he was good with that.
We had a few acres of black fabric left over from Ben's disco party last year, so I got some neon fabric paints and the
kids made HUGE "outer space" banners for Sam. Very cool - he can see the contrast, and they did a great job.
They played with the parachute (Sam was not a fan), hunted for moon rocks (we wrapped a bunch of crap from Oriental Trading
in aluminum foil and hid it in the playground) and decorated sugar cookies to look like aliens.
Then the best idea of all. I usually make a fairly elaborate cake for Ben, and I just didn't have the heart to
do it for Sam, knowing he wasn't going to eat it. So our friend Laura suggested "moon pies" - and we stuck candles in
them, and the kids all made a wish for Sam. Couldn't have been better.
I'll post some pictures right now.
August 28, 2008
Hmmm - I think it's fixed
Okay - everyone has been worried because I seem to have gone AWOL again, which is never a good sign. But actually,
the problem has been with the website, and not me. I think we're up and running again - I hope I hope I hope.
We'll see what happens when I try to post this.
July 28, 2008
Is this going to work? I haven't been able to post lately.
July 9, 2008
A little better all the time
We're still going to hyperbaric oxygen treatments every day, and I really think it's bringing Sam "out". He's complaining
more (oh, yay) and responding, slightly, to so many new things he never seemed to notice before.
He turns 4 at the end of the month, and this year we are going to have his first "kid party" and invite some kids his
age. It's hard for me - I don't know how I'll make it through, because his birthday requires me to relive his birth.
I do that enough on a regular basis; actually "celebrating" that day shoves me right over the edge. I try to look at it as
a day that miracles happened, but it's not that easy to convince myself all the time.
But I know he knows what's going on, and he definitely wants and deserves a birthday party. And so we shall celebrate.
If you should see me sobbing in a corner, just walk on by and don't blow my cover. I'll be okay in a minute.
July 1, 2008
Do you see what I see?
I think Sam can see better.
I really do.
I am Sam's worst critic when it comes to his vision - I hate to think he's tracking with his eyes or focusing and then
decide later I was mistaken. Heart-breaking. So I ALWAYS try to talk myself out of it - I don't know why.
But last night I was cleaning the gucky stuff out of Sam's eyes - his allergies are bothering him terribly. When
I got the Q-tip about 2 inches away from his eye, he shut his eye and turned his head away - JUST LIKE ANY KID WOULD DO!
He has never done that before.
He was also watching tv the other day; I came in from dropping Ben off, and I thought "I SWEAR he's watching that cartoon;
I'm sure of it". And then my mother told me that she had tried to move him away from the tv, and he screamed and yelled.
So there we go - other moms have told me that vision was the first thing to return when doing hyperbaric oxygen treatment.
Imagine what a difference his vision would make. He could make choices, he could read, he could learn more.
He could engage - it would mean everything.
June 28, 2008
Well! I guess I was wrong. I was sure nobody must be checking in anymore since I haven't posted in so long.
It touches me that you still are.
So what's been going on with us. Let's see. I know I've been saying forever that Sam continues to get more
"present" and more aware. He still is - he squirms more, vocalizes more, and just generally reacts more. A few
weeks ago, we were visiting friends and kids and just having a nice evening. Sam and Ben and I had to leave, and since
the weather was kicking up I just hurried out the door with Sam in my arms. Wrong move. Since he WILL NOT be ignored,
he had a complete screaming and crying fit in the car. I got Robin to come out and say goodbye, and as soon as she started
talking to him and said goodbye, he was fine.
Those things - those "I'm in here - do what you're supposed to" things - keep me on my toes. A few weeks ago, our
pastor was on vacation and the pastor who was filling in didn't realize that Sam gets communion. He just gave him a
blessing, and since I thought Sam was asleep and I didn't want to cause a fuss anyway, I just took communion myself and went
back to our seats. Well, mister got in a snit and screamed the whole way back when he realized that he was being
"overlooked". Screamed and screamed.
I'm just overwhelmed with how much time ABR therapy takes. Ideally, I'd do it 5 to 7 hours a day, but that's pretty
impossible. We get about 4 hours in, and I perseverate over the hours I'm NOT doing. It also doesn't address his
cognitive issues - namely, how to get him "out" of there - but the hyperbaric oxygen should help with that, I hope
and pray. We've also been talking a little bit about sending him to school; I'm just so afraid of what will
happen to him if I'm not right there. I can't imagine finding a nurse I would trust with him, and I'm
terrified of what might happen. But maybe there's something there he's missing out on? Maybe he'd like it?
I know, I know, everybody stresses over what to do about their kids. The thing is, our issues aren't more important,
but they are more pressing. I just feel this giant clock ticking every day, and I'm in a panic to DO SOMETHING all the
time.
Sheesh. All right. Enough of that.
Sam is really doing well. I think the hyperbaric oxygen is making a difference for him; I'd love to do it more
often. And we're going every day! Last week, we didn't go because Ben and I had vacation Bible school. It
was a great diversion for me, to put myself into something other than therapy for a few hours a day, and Sam and Nana got
to spend the days together without me. I still felt awful about missing his appointments, but apparently, I am just one person
and that's the way it goes. Harumph.
June 26, 2008
And so it goes
So I'm sure nobody is even checking this anymore. My heart just stopped being in it anymore, but I do know and
do appreciate that there are lots of people who check in from time to time.
Anyway, Sam continues to do well. He is strong, he is healthy, he is madder than hell most of the time, but physically,
he is great, I guess. I so desperately want a smile, that's all I focus on much of the time, but he's doing just fine.
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