| Samuel's Journey
|January 18, 2011
|So, where to
start?? Another year almost over. Wow, how the time flies. We've had
a very busy year of course. Sam is now 8 1/2 years old! He is a big 3rd
grader on the honor roll so far. He is a Bear in cub scouts, and he
has learned how to doggy paddle without help in swim class. He just got
his new faster and flamed out chair, and we got to meet and give his other
power chair to his little friend that also has SMA. We've traveled to PA,
MA,LA,and TX this year. Sam also sold enough popcorn in scouts to earn his
very own PS3! He had his first hospital stay in September, and that really
scared us a bit. The good thing that came out of it was that he now has a
new doctor that is managing his care and he is super! Well, that is the
year in a nutshell.
|February 23, 2010
|Oh, what I wouldn't
give to go back to February 8th...Our lives have been turned upside
down since the next day. Our friend and Sam's caregiver since we got
him off the plane 7 1/2 years ago, Eston, passed away. Reading my
last post about what Sam was going to lose.... How could I have know that
would be our last night with Eston? How could I have imagined that Sam
would lose him? That we would lose him??? We are broken
hearted... To add to the sadness, Sam said tonight, " I wish I
didn't have anything like Michael that way I could make my own bath"
|February 8, 2010
|I guess sometimes I
forget that SMA does what it does. Sam is such an I can do it kind
of guy that sometimes I forget that he has already "lost" so many
things. We are very appreciative for how healthy he is, so its hard
for me to "complain." But here is a safe place to do that right? On
Saturday we had a cub scout event and they were singing the Star Spangled
Banner. The kids were standing and saluting during the song. I
was thinking about how I wished Sam could stand like the other kids and
then I saw him struggling to salute. The other kids have their
fingers horizontal on their foreheads and their elbows out in the air.
There Sam is with his elbow close to his stomach, his palm on his cheek
and his fingers vertical pointing up to his forehead, desperately trying
to hold his own salute. Eventually, he took his left hand and held
his right up. His left hand is weaker, so he had to lean down with
his body to grab his right hand and hold it up. Mike and I were
fighting the tears by the time the song ended. When he first started
scouts last year, he could salute just fine. I do know how blessed we are,
really I do... but it broke my heart. I don't want SMA to take
everything away from him.
|July 21, 2009
|Almost halfway done
with summer and our family still hasn't slowed down to smell the roses
yet!!! Samuel's MDA camp went wonderful. We dropped him off
and he didn't even look back when we said we were leaving.
I called to check on him the next day and his leader said she would have
him call me after lunch. She called back a couple hours later and
informed me that Samuel said he was "too busy" to call me!! So when we
dropped him off at Victory Junction a couple of weeks later, I knew
he would be ok. Again, he had a blast! Michael went to the
same camp the next week, came home washed his clothes and is now at church
camp till Saturday. In between Sam's resident camps he also went to
Cub scout Day Camp. His Daddy made him a Archery set up that made it
very easy for him to shoot the arrows. He was just as "good"
as the other kids! He met a lot of new friends. It is amazing
to me how the kids take to him, they really seem to see Samuel, not just a
kid in a wheelchair. We have been battling the feet issues with Sam.
Since my last post, he has had 2 more castings on his right foot. Last
week we had both of his feet MRI'd and found out that there are fractures
in both of them. So he now has casts on both feet. They are sending
us to Endocronology to see about getting the Phosomax through IV. We
are completely undecided on whether or not we want to do that. He is
completely opposed to it. I guess I just don't understand why only
his feet are breaking if his whole body has low bone density. He
isn't fragile at all. I just wonder if there is another explanation
for the feet and maybe another treatment? Its not stopping him though, we
are headed to Busch Gardens today and he is looking forward to the Big Bad
|April 3, 2009
|Have you ever heard
of Victory Junction Gang Camp?? We had heard of it, but had no idea
how great it was. It was started 5 years ago in honor of Adam Petty.
The whole camp is based around Nascar! We went last weekend for the
Family weekend. It was amazing! The kids had such a blast.
They have resident camp during the summer that we were considering sending
the boys to. Sam Sam is only 6 so I'm still a little hesitant, but he is
all for it. He will have his own assistant, and his own little group of
boys kinda like him. It is going to be such an opportunity for him.
Michael also gets to go to a sibling camp. I think I'll feel better
about it when the time comes, because the last week of school Samuel will
actually do his first drop off resident camp with MDA. We are
equally excited and scared about that camp too. So... Poor Michael,
He is 10 and his 6 year old brother will have done 2 resident camps
without any family, and Michael won't do his first resident camp
without family until after both of Samuel's! I will post Victory Junction
Pics as soon as I can.
|March 17, 2009
|We just came back
from a really fun vacation. It started off in Florida for the
biggest Monster Jam that we have ever seen! Samuel wasn't feeling
well and actually slept almost through the whole thing. Poor baby.
We then went and spent a few days with our friends in GA. After that
Samuel had his Power Wheelchair Soccer tournament in Atlanta. Gram,
Brian and the boys came up to see him play (I think maybe to see us too)
lol. We are all very proud of him. His staying focused
skills could still use a little work, but overall he did wonderful! He
even made a couple of goals. He has been complaining for a while about his
feet. We took him into the doctor when we got back and they think one of
them might have a break. He has a cast on until next week. The
strange thing is, both feet hurt the same amount and in the same spots,
|January 5, 2009
|We had a great last
of the year and so far a great new year. Samuel has been really
healthy this winter and we are truly grateful for that. A while back
he opened my eyes on what I think of as convenient and what he thinks is
unfair. We had stopped at the house for just a "few" minutes so I
left him in the van. The other kids got out and were helping at
first, but then they were playing. The adults got to gabbing and
about 15 minutes went by. I heard Samuel hollering to me from the
van so I went to check on him. He was alone and very mad! He
said "WHAT??? ONLY THE KIDS THAT CAN WALK CAN GET OUT??????? THAT'S NOT
FAIR!!!!!!" It wasn't intentional, but I definitely left him out.
I told him he was right and turned on the xbox. All the kids wanted to
come in and play. I told them it was only for the kids who waited
patiently in the van. He thought that was hilarious! We finally got
Samuel signed up for Medicaid. We really should have done it a long
time ago. The first thing we had done was redoing the bathroom.
For the first time in Samuel's life, we can now say, Go brush your teeth
and he can do it by himself. We are getting the doors to the
playroom and their bedroom widened next, along with an open sesame on the
front door so he can open it and close it by himself. That is going
to be so cool for him!
|Well, again it has
been a long time! I'm sure you are all surprised. LOL The
monster Jam in Florida was awesome as usual. We saw our family and
had a great time spending time with them. In March, Samuel went down to
Atlanta for his regional soccer tournament. His team won 1 game and
he made 2 goals in that game! We were sooooo proud. After that, the
team was invited to be a part of the Norfolk Admirals opening.
Samuel was able to go out on the ice and do some spins. In April the
team had a gun's and hoses event. The police men an firemen got into
the power wheelchairs and played against Samuel's team. The same day
was the pinewood derby at church. Samuels "monster truck" wasn't the
fastest, but he received a reward for his design! At the end of
April, we all headed to Washington DC to talk to the congresswoman and
senators about SMA. We are trying to get granted more money for
research to find a cure. Please pray that this cure will come soon.
It was fun to see old friends and make new ones. We are already
looking forward to next year. In May, Samuel signed up to be a tiger
cub scout. He had his first den meeting and then Family Camping a
couple of weeks later. (He stayed away from the fires this year) He
looks absolutely adorable in his little cub scout uniform. A couple
weeks after that we all went down to Jax again for my nieces wedding.
Congrats Jacquie and Andy!! It was fun again to spend time with
family. That same weekend my other niece graduated from college.
Congratulations Jayna!! A couple weeks after that another niece
graduated from high school. Way to go Samantha!! In June, we
took a 3 week trip to Utah and back. We had a family reunion/bday
party for our Aunt Willie. It was awesome to see everyone and to get
back home afterward. When we got home, the letter was in the mail, Samuel
passed Kindergarten!!!! Another letter said his new stander was in.
In July (wow.. present time already...) Samuel went to Tiger day
camp. Michael and Gram endured the whole week of boiling hot son or
pouring down rain! Thanks Guys!! It was a really fun camp and
Samuel earned a lot of awards. So... as you can see, I've had plenty to
write about and not a lot of time to write it! I'll try to do better...lol
|February 17, 2008
|Last night we went
to the local Monster Jam. (I say local, because next weekend we will
be going to the Jax, Florida Monster Jam.) We had alot of fun as
usual and as everyone was leaving, Stone Crusher (Steve Sims) and Mopar
Magic came into the stands to give away a Wii Monster Jam game.
Can you guess who Stone Crusher picked? Thats right, our Samuel.
We told Steve Sims that we would see him in Jax and we are pretty excited
about it. The Lord has really blessed our kids and we hope they can
pass on that blessing to others. I know they do to us every day!
January 1, 2008
Merry Christmas and Happy New Year! Wow time really flies. The
boys had a great Christmas and we have had alot of fun during our time
off. Samuel's new wheelchair came in and it is unbelievable.
It is sooooo much faster than the other one and it is kinda scary when he
takes off in it. We posted a couple videos that we took today of
Samuel showing off his soccer and spinning skills. He has been
having so much fun. He is becoming aware that this is permanent, but he
still seems confused sometimes. He made a comment to his teacher at church
that Jesus wasn't like him because Jesus can walk and he won't ever walk.
Then today when we were showing him videos of himself , he said
"Look Michael, that is when you were little and you couldn't walk".
Its hard to know what to say to him and how much he actually understands.
The good thing is, he hardly ever makes any comments at all about it.
Mostly he is just the happiest (and stubborn) kid you would ever see.
November 24, 2007
Happy Thanksgiving all! We had a great time together and ate way to
much as usual. We are looking forward to our family from Florida
coming up next week when we will have another "Thanksgiving" dinner.
We went to the Monster Jam last week, so we have our fix until February
when we will have another one here and then the big one in Florida.
The kids really love it. Tonight Samuel and I were playing a board
game (Monster Jam) and he beat me fair and square. You really have
to use strategy to win (and get good cards...) I'm so proud of him for
winning!!!! He has struggled in school this first quarter, but
we have high hopes for the 2nd quarter. We work everyday on his
"homework." Its just stuff that I've put together to help him, but
he loves doing his "homework just like Michael" He has really great
teachers and we love the school.
October 16, 2007
It has been a long time again.... The bad news is that Samuel broke his
leg. The good news is that it happened so long ago that his cast is
already off!! The summer flew by as usual. We went to the
Greenville SC gathering and met a lot of new families. It was really
fun and we can't wait till the next one. We took a long and eventful ( and
fun) trip to Florida. We signed Samuel up to get a Coles Quilt. So
any of you cross- stitchers out there can sign up to make a square for
http://www.our-sma-angels.com/colesquilts/ School started
way too fast for our little kindergartener (is that a word?) He is
doing good. He tested the teacher a few times and I think he finally
realizes that she is going to win. Yesterday, Samuel caught me offgaurd
and left me searching for words. It went something like this:
(Alexis) Why you don't walk?
(Samuel) God forgot to make me to walk.
(Mommy) Honey God didn't forget to make you walk.
(Samuel, Completely shocked)
YOU MEAN GOD WANTED ME THIS
I tried to explain to him that God made him a very special
boy and that he was going to do great things for God. I think I was
more traumatized than he was because I was explaining as we arrived at
the park. At that point, the park was all that was on his mind!
Well Samuel had to again prove what a little trooper he is. We
went camping a couple of weeks ago and Samuel decided it wasn't enough
adventure for him. He was roasting "mush mellows" and his chair got
"wobbling." He flipped out of it and fell onto the metal ring we had
around the fire. His hair got singed and his face is burned above
and below his eye. (Amazingly his eye wasn't touched.... Isn't God good!)
When we went in the emergency room, he had to get an IV. He started
fussing just before they put it in and then he stopped them. He
said, "Wait a minute! I cried before it hurt!" Then he stuck his arm out
and didn't cry a bit!!!!! His face is looking much better now.
He will have to stay out of the sun for 6 months to a year. We are
so thankful that he is ok, and for all the prayers that went out for him.
Samuel cracks me up everyday. Today he made up a rap/love song and
sang it to me. He did it for a hershey kiss. LOL. A couple of
weekends ago, Samuel's power soccer team held a fundraiser where they put
firemen in the power wheelchairs and had them play against Samuel's team.
It was great fun! There were not enough power chairs for a full
team, so they put Samuel on the firemen's team and made him the goaly.
He really didn't do well. A bunch of shots got through and he really
didn't seem to care. We just figured he's 4 , so whatever, he
doesn't know what he is doing. The next day I told him to tell his
Sunday School teacher what he did and he said. "We played soccer but
I didn't shield them cause my team needed to win and WE GOT GOALS!!!"
Little did we know, Samuel knew exactly what he was doing!! The
firemen invited Samuel to their family picnic where he was able to see
them put out a fire and climb in a fire truck. All of them got
together for a group picture that I'm sure we will all treasure for a long
time. It was a fantastic day. Today Mike and Samuel are
leaving for Baltimore for the last visit of the drug trial. We don't
know when the results will be in, but Mike and I already have different
opinions. We have noticed that his crawl is soooooo slow now and
very short. Also, to see him roll takes work just to watch him.
He used to go very fast across the living room and down the hall, but now
it takes what seems like a long time just to go a few feet. His body is
definitely digressing but the question is, did the medicine slow
down the digression Would he be worse if he hadn't have taken it?
We are not sure. What we keep in mind though, is that we are very
lucky. Samuel is a very strong type 2, even with his weaknesses, we
understand that he is fortunate compared to a lot of the other SMA kids.
The other day Samuel said he was going to grow up and date his sister, LOL
I tried to explain to him that that isn't cool, but he wouldn't hear of
it. He said I'm going to mommy! He is such a goofy kid!
How does the time go so fast?? Samuel has really been keeping us busy
lately. We are working on a new sports page for him because he is
trying out a lot of things! We went to a sports expo and he tried
power soccer, kayaking, wheelchair tennis, sitting volleyball, table
tennis and rugby. He just finished swim lessons for this season and
just started wheel chair tennis. Also he is on 2 power soccer teams.
One is with the rec center and the other is a traveling team that he will
practice with now and travel with when he turns 5. We were able to
do our first MDA walk and our team(Samuel's Soldiers) raised $540.
Thank you so much for those of your that donated!! It was such a blessing.
We just got back from Washington DC where we saw our congresswoman and 2
senators and asked them for an increase of 30 million dollars for finding
a cure for SMA. It really seems close (the cure) when the
researchers talk about it. They are doing so much and the NIH (not
sure what it stands for) has handpicked SMA out of 600 genetic diseases as
the one that is the closest to a cure and the one that needs the most
money! Today we had our Awana Grand Prix and Samuel's "Monster
truck" took 1st place in speed! He said it is because his car is the
fastest in the world! So, like I said, we have been very busy.
Samuel's ortho doctor did his own research and called us back to tell us
that we do not do this hip surgery on our kids. We were so
impressed that he took the time to find out. We have a lot of respect for
him and we are grateful not to have to make the decision. What made
me decide to write today was because Samuel really made me laugh.
(maybe its funny, maybe I'm tired.... you can judge) I asked him if
he wanted a hotdog and he said "No thank you... but I want bread with
ketchup and a hot dog because I'm HUNGRY!" Well... I think he's
We went to ortho the other day and really didn't get a good answer on why
Samuel's knee hurts. We are going to try to use his stander more and
his high braces less. The Doctor kind of blew us away on another
thing though. Samuel's right hip is (sublexing?) 60% out of joint.
He wants to do surgery to keep it from coming all the way out because once
it comes out, it can't go back in. The surgery must be pretty
intense, because it comes with a 3 month recovery time. I posted on
the SMA sites, and most everyone said to NOT do the surgery. They
said the muscles are not strong enough and the hips will dislocate again,
even after the surgery. The doctor completely disagrees. Most everyone
that has or has a child with SMA says their hips are dislocated and they
feel no pain. . If we choose not to do the surgery, then when it
pops out, there is a 50% chance he will be in pain the rest of his life,
and a 50% chance that he will feel no pain at all. He wants to see us in
the next 2 months to see how the left hip is doing. (Right now it is at
30% out of joint) He wants to do the surgery in the next 6
months. Right now we are going to do a lot of research and talking
to everyone who will talk to us about it. On a good note, we went to
Arena Racing the other day and Samuel was allowed to sit in the #75 (Greg
Pass) car! He really had a blast! Michael says he wants to drive one
himself when he turns 14.
|January 11, 2007
We are just now recovering from a trip to Florida even though we got back
on the 31st of Dec! It was a very fun trip with alot of our family.
Nanna treated us to a pirate show, Universal Studios, and Isle of
Adventure. Thanks, Nanna!!! We also hit Sea World and Busch
Gardens! We were so exhausted after all that , we were too tired to go to
Disney! So, on our "Relaxing" day, Michael went to an aquarium, Samuel and
Daddy went on an airboat, and Mommy took a nap and went to Walmart!
Samuel has been having some issues with his ?knees? When we
straighten out his legs, he complains that the top inside of his knee
hurts. It is really hard to get him into his high braces anymore
because he gets very emotional. We are scheduling an appointment
with ortho to see what that is all about. Other than that, Samuel is
doing great for the new year and we are looking forward to a lot more fun!
|December 2, 2006
Samuel was invited to be in the Virginia Beach Christmas
parade as part of his Blaze Sports.. They told Mike to decorate and
use lights. Well..... He really outdid himself, and the kids
loved it. Michael rode at Samuel's feet and used his heeleys to keep
him going. As we listened to the crowd when we went by, all we heard
was "Dolphin!" and "Heeleys!" The kids had a blast and so did we.
|We got to go to the the Diggers dungeon (Home
of the Monster Truck Grave Digger). We were able to get in an real
Grave Digger Monster Truck. Samuel had a blast he loves those big
trucks. Be sure to see the pictures from the Monster Jam and the trip to
the Diggers Dungeon in the photo section. We had a good Thanksgiving
with family and Friends.
|Samuel and Daddy made it back from Baltimore
and they had a great time. Samuel wasn't impressed with the nerve
conduction test except when he shocked Daddy. He was so not
impressed with the blood draw that when the nurse asked him which arm for
the blood draw, he said "Yours!" Tonight is his (our) reward, we get to go
to the Monster Jam. He loves it, and has been talking about it for a
couple of weeks. Today we went for a "walk" on the Beach boardwalk
with the Blaze Sports team that Samuel is on. The other kids had
hand clycles and Samuel used his power chair. We all had fun, but we
are now looking to get him either a hand cycle or a special needs
November 15, 2006
||Yes, again it has been a while since we
updated. We went on a long vacation in September/October and saw a lot of
our family. I t was great! (pics are coming). For Samuel ,
September brought School, Awana, Swim classes and Blaze Sports. He
is having a wonderful and busy time with all of them. Today He and
Daddy are taking a trip to Baltimore for the drug trial that he is in.
We haven't known so far if he is on the medicine, but within a couple of
weeks, he will be on it for sure. His appetite has grown alot, along
with his length (38"). We are in the middle of a coin fundraiser
that we are hoping will bring in a lot of money for SMA Support!
Thats all for now. Keep our Samuel in your prayers please.
|| The boys were pretty good today while
driving home from church until the last five minutes. They started
fighting about the video game until i turned it off. Then they started
with the "can i take my shoes off? Can i take my shirt off? Can i play
with Michael's hat?" We kept telling them that we were almost home and to
stop asking for stuff. Michael then said, "Can I play with the
computer ?"We said again, we are almost home. Then Samuel said, "can I
play with the computer??" At this point, I was very frustrated with them.
I told the boys that when they get home they were going to sit on the
couch and practice not torturing Mommy. Samuel said "after that can
I play on the computer????" What am I going to do with that
boy?? Its been a while since I updated, I always think oh I should
put that on the website, but then I forget. One thing that happened
a while back was kind of funny. Samuel woke mike up at 4:30 in the
morning to tell him that it was nighttime. Mike told him that people
sleep in the nighttime, so Samuel said OK and went back to sleep. We
had also gone to a Tides Baseball game a while back, and after the game
Michael, Samuel (and about 100 other kids) were able to go around the
bases. It took a lot of work to get the power chair down onto the
field but it was worth it. The boys had a great time, and alot of
people commented on how well Samuel drives. Of course just letting
his wheels touch wasn't enough, he had to run over all of the bases with
the whole chair. He's very efficient.
July 11, 2006
||Yesterday Samuel and I went shopping and by
the time we left the Sams, we had 2 full carts. I said (out loud to
myself) I can't believe noone is helping the lady with 2 carts and a big
boy. Samuel said, "but mommy the lady can do it herself". I said,
Samuel who is the lady?? (I really didn't think he knew) He said
"you are mommy, you don't need help!" I know he is smart, but
sometimes he really surprises me. We try to have Samuel walk in his walker
every day, and I keep trying to make him walk farther each time.
Today he went up the ramp and into the house for the first time. I
was calling Michael and telling him how cool it was that Samuel had walked
up the ramp and Samuel said. "But mommy, everyone walks up the ramp!" He
didn't see that it was a big deal, just part of life. I might be reading
more into it than is there, but it seemed to me like he was saying he is
just like everyone else, no big deal.
June 21, 2006
||Kids generally ask what is wrong with Samuel.
My standard answer is "God made him to roll instead of walk." For the
first time, Samuel beat me to the punch and I liked what he said.
happened to him?"
"But why are you in the wheelchair?"
"I just roll, cause Jesus made me a wheel boy."
Samuel said it like it was no big deal and the kid thought it was
no big deal after he told her. I thought it was great!
June 12, 2006
||Samuel has been doing fantastic with his power
chair. He had to be talked to the other day because he took
off down the road and wouldn't come back. He "had to go see his
friends". He started the medicine (or placebo) on June 2nd.
Our imagination is making him stronger even if the medicine isn't. LOL I
really think his appetite has picked up big time. Saturday night we
went in the pool for the first time this year. Samuel was begging to
get in! He sits in the baby floaty and grabs the side. He moves
around the pool and kicks his feet and says "I'm swimming!!" We
asked him why he wasn't allowed in the small pool by himself and he
doesn't remember why. Isn't that great? I am glad because I
was signing him up for the swim classes even if he was kicking and
screaming. But I guess he'll be laughing and playing!!
May 27, 2006
||We went back to Baltimore for our 2nd
screening visit for the clinical trial. Samuel did great! The
people there seem to really like him. We should be getting the medicine
(or placebo) sometime this week. We have the power chair and Samuel
absolutely loves it. He looks so grown up and tells us he is going
to go with his brother. He loves being able to keep up with him,
however his steering has a little to be desired. LOL He does still
ask us to drive after a while. I don't think he likes to concentrate
on steering for a long time. You know, 3 year old attention span! He
started running fevers after we got home on Friday night and Saturday, he
didn't want to eat or ride rides at the fair. The fevers got high
and his breathing got fast so we took him to the ER. He has
Pneumonia. He has been a lot better today now that he has his
antibiotics. Looking for a quiet Memorial Day at home tomorrow.
May 20, 2006
||Our Smargaritaville was a great success!
Over $20,000 was raised for research!!! It was great fun and we met
a new couple with an eighteen month old type 2 little girl. She is a
doll. Stacey Saville is one of the strongest people I've ever had
the privilege to meet and she really did a fantastic job putting it all
together. Someone came up to Mike while he was at a boy scout
campout today and asked him if we would like a power wheelchair. We
should be picking it up this Friday!
May 1, 2006
||This past week has been hectic, but fun.
We went to Washington DC to talk to our leaders about funding for SMA.
We all were able to be lobbyists and it was kinda cool. Everyone we
met were very interested in SMA and very nice to us. We were
able to ride the metro, which was quite an experience. The Washington zoo
will have to wait for us once again as our car broke down on the way.
We finally got it fixed about 5:30 pm and started home. Samuel said,
"But mom, you said we could go to the zoo????" It made me feel bad,
but not bad enough to take him at that point. LOL We'll have
Daddy take us!!
April 16, 2006
|| Last night after the boys were put to
bed, Michael called me and told me something was hurting him. I told
him to come show me, and then I sent him back. A few minutes later
Samuel said "Mommy, my tummy hurts me" I told him I would be there in a
minute and he said, " NO your supposed to say come show it to me!" So I
did, and he did. He crawled all the way out to the living room
(about 20 feet). I'm so proud of him.
April 14, 2006
||We made it back home after ALOT of traffic!
The trip was fun except for the blood draw and the "I don't want to
give the doctor my pee." Samuel was measured and checked for what he is
able to do. We go back next month for the same tests. We met 2
SMA kids. Anna (type 2) is 7. Steven (type 3) is almost 9.
They are both such sweet kids. Samuel showed that he really doesn't
understand SMA when he asked me who broke Steven's legs. I told him
that Steven had SMA just like himself, but he wouldn't believe me. He said
"NO, someone broke his legs!"
April 11, 2006
||Samuel and I are leaving tomorrow for
Baltimore! He has been (almost) accepted into a trial drug program.
The drug shouldn't give him back anything that he has lost, but it might
make it so he doesn't lose anything else. The first two visits are
screening visits to make sure that he is right for the program. (We know
he is!) Please pray for Samuel as we are very excited about this
opportunity. Speaking of prayer, I wanted to mention something that really
touched my heart. While at church tonight, I noticed a picture of
Samuel on someone's desk. Under the picture, it says "Have you
prayed for Samuel today?" It is great to know that we are not in this
alone. Just knowing that someone is praying puts things in perspective and
makes everything better. Susan, you don't know how much that encouraged
me. Thank you!
March 24, 2006
||Today we made cookies for Daddy. Samuel
wheeled himself up to the table because he wanted to get his own. He
got his and I left the room. When I came back in a little while
later, he jerked his hand away from the cookies, looked at me like "What ?
I'm soooo innocent, and started singing doo da doo da dooby doo. He
was definately debating as to whether or not he could get himself another
cookie unnoticed. He is so cute.
March 23, 2006
||Yes, it is long since time for an update!
It is amazing to me how fast time flies. Just before Samuel's
accident in August, while in florida, an 18 year old friend of mine past
away from a car accident. We love the family so much and Vikki will really
be missed. We think of the family, Chris, Susan and Stephanie that
Vikki left behind and it just hurts so much. Also in August, we had a
great time at the SMA conference right here in Virginia Beach. We
were able to meet many families and make new friends. Samuel had a
great time. September was the start of school and time flew fast
there. He has 7 classmates including his "best friend" Kellie Rae.
October and November were fast and uneventful for the most part. In
December, we lost a precious little strong Type2 girl named Morgan. She
was 3 years old. It was a shock to everyone. We are aware of the
"uncertain lifespan" of these children, but that was really to much for us
to comprehend. Our hearts and prayers go out to Bill, Stacey, Zeke,
Clayton and the rest of Morgans family. In January, we all went to Disney
Land! Than was really fun. Samuel was able to ride just about
all the rides he wanted to. Of course he loved the train ride the
most. Samuel liked Feburary because he gets to go to his brother's
big birthday party. It is always a day of chaos that I look forward
to every year. His aunt Carolyn made sure he didn't feel left out by
giving him some presents too. Although he slept through Michael's opening
of the presents, he was wide awake to play video games after! At the
beginning of March we got a call from Dr Crawford concerning the Clinic
trial. We are waiting for his call to have us meet in Baltimore to
get things started. We are excited about that. Samuel is 37" and 28
lbs right now. He really hasn't "lost" anything in a while. We
have noticed that if there are stairs that are wide, he can climb them,
mostly because he rolls onto them.We have lots of pictures so keep looking
at his new photos. Hopefully I will write again before 6 months go by!!
It all started like any other Sunday. (Sorta,
I was in Florida and Mike had to take care of the kids) LOL
After church the kids (Christopher 15,
Cassie 12 and Michael 6) wanted to go swimming. Mike told them to take
Samuel (2) out too so he could play in the "baby" pool. (Keep in mind,
I've personally put him in the "baby" pool and went back in the house
and left him alone out there. Afterall, it is a "BABY" pool, about 6
inches i guess.) Later, Chris had to use the restroom so he told Cassie
and Michael to get out of the pool. (we do have pool rules, we are
responsible people). He filled Samuel's water gun and told the kids to
watch him. Cassie and Michael got out of the pool and were drying off
when Michael said, "Look Cassie, Samuel is blowing bubbles" Thank God
Cassie knew that wasn't right and she grabbed Samuel. He was limp and
blue. When she gave him to the first 2 adults they saw, the kids and
the adults were screaming and crying. My sister said she really
thought he had died. Mike heard the commotion and kicked everyone out
because he couldn't hear if Samuel was breathing through all the
screaming and crying. Mike had to beat him on the back and water came
out and then he was breathing very shalllowly. He rushed him to the
hospital and that is where he spent the night and he is fine now.
What did I learn? There is no such thing as a "Baby" pool.
July 20, 2005
|Well, we are back from vacation again.
We were going to stop at the Washington Zoo, but it rained. We were
going to stop at the Baltimore Zoo, but it rained. (We did get to go to a
really cool Aquarium and the Hard Rock Cafe with our niece Jayna, Hi Jayna!!)
We were going to go to the ZooAmerica in Hershey but ummm, it rained.
Although it was raining at the Hershy Park, the boys loved it. Michael
likes the go to the exit and use the not wait in line option that Samuel
gives. They rode a lot of rides. We had a big family
reunion(Hi Grandma) and met alot of the family. We were also
able to spend time with Mike's Brothers and sister and their families.
(Hello all) The kids took turns going for rides in Samuel's wheelchair and
that was fun. Even Samuel kept saying "My Turn!!" We then went to
Dutch Wonderland and guess what? It didn't rain! The rides were
geared toward family fun and that is what we had! There were only 3
rides in the whole park that Samuel was too little to ride. Thanks
Mom for putting together such a fun trip. We hope to do it again
|July 7, 2005
||Take me out to the Ballgame, Let me sleep on
the concrete!! Well at least that is how Samuel thought the song
went. He past out and slept on the ground at out feet most of the
baseball game that we went to. When he sleeps, he sleeps.
|June 29, 2005
||This past week and 1/2 has been exhausting for
all of us. Michael's boy scout day camp was Monday through Friday,
7:45-4:00. Samuel went to what they call the tot lot and everyone
seemed to fall in love with him. The first day he cried a little,
the rest of the days he didn't even look back! We then, Friday
afternoon, took a 9 hour trip to see his Uncle, Gram and Great
Grandma. (Happy way belated birthday Great Grandma!) We went to an
aquarium where both boys had a great time. We are ready to relax
|June 6, 2005
||Finally, Michael went with Samuel today
instead of the other way around. Samuel's preschool planned a day at
the park where the kids could eat and play together. It was great
meeting other parents and getting to know his teachers better. We
are very pleased with his school.
|June 4, 2005
||Today was Zoo day with the kids from Michael's
Sunday School class. In front of our Zoo are many fountains of water
that the kids can run through. I put Samuel in his swim trunks and then in
his wheelchair. He kept pushing himself closer and closer. The
closer he got the more he laughed. He never actually got all the way
in the fountain but it was great seeing how excited he was to try.
|May 14, 2005
||We all went camping this weekend with
Michael's cub scouts. The boys had a great time. Samuel "rode"
his bike for quite a ways and he is getting much better at steering.
He was able to participate in all the activities that Michael did so we
are now anticipating how much fun Samuel will also have as a cub scout in
|May 8, 2005
||While filling out some paperwork for a sma
trial that is coming up, we realized that Samuel can't raise his left arm
above his head while he is sitting alone on the floor. He can kinda
do it in his carseat . His right arm is fine at this point. We were
told that maybe if we often move his arm up and around for him, then he
will lose the muscle tone slower. Pray for this trial. We
don't want Samuel to lose anything else. The trial has passed phase
one, and giving the kids drugs or placebo will be phase two.
|May 4, 2005
||Today was really fun for both of the boys.
Michael had a meeting with his cub scouts at a rock climbing gym. Michael
was climbing everywhere. Samuel was in his chair for a while, then
he asked to sit up closer so he could watch Michael. When I moved
him, 2 people came up and asked me if Samuel would like to climb. We
were both very excited. They hooked him up to the little equipment
and he was hanging on to the wall with his hands. To go a little
higher, the man got on the wall with him and they pulled him up and let
him hang on again. He got about 6-7 feet in the air before he wanted
down. I was so proud of him. Unfortunately, the only camera I
had was my cell phone so...... Well at least I can see the pics. LOL
|April 27, 2005
||We have been swimming 3 times a week for the
last 5 weeks. It has been a lot of fun, but Samuel and I are both
kinda glad its over for now. We will start again in the middle of
June with his therapy swim class once a week. Samuel does good with his
blowing bubbles and reaching for stuff. He was able to float without me
touching him while he was wearing the lifejacket. The Noodle totally
freaks him out for some reason. It was almost humorous. All I
had to to say was noodle and he would start screaming NOOOOOOO. Other than
that, we had really great lessons.
|April 22, 2005
||Another school field trip today. This
time it was a farm. I hadn't really thought it through before we
left so I wasn't as prepared as I should have been. It never occurred to
me that the wheelchair would get so filthy, and that Samuel would end up
with poop on his hands. It was a really fun trip, he had a great
time. They actually let the kids go inside the chicken coop and goat
pen. (The goats were very impressed with his wheelchair, I don't think
they see them often. They flocked to Samuel and bit at his chair) We don't
want Samuel to miss out on things so we will go again, but I learned that
with some trips, I need to maybe think about rubber gloves or something
|March 29, 2005
||Today Samuel showed me that he kinda
understands that he won't get around and do things like other kids do.
He is only 2 1/2, so I was surprised that he knew what had to be done.
He was crawling around the house, and his hands gave way. His face
hit the floor and left a little bruise. When I picked him up to hold
him, he said, "Mommy, wheelchair, please" At first it was very sad,
but then I realized it is a good thing. It's impressive to me that
he didn't just cry and make me hold him. He wanted to be free around
the house and he told me what he wanted to help him do it. Like I
said before, Samuel will be able to do whatever he wants. We are
very proud of him.
|March 17, 2005
||Samuel is now 2 1/2. We have completed his
round of doctors for his 6 month check-up since we found out about his
SMA. During the 6 months, he has been getting physically worse, and
has lost alot of muscle tone. He no longer cruises, climbs stairs, or gets
out of the pool by himself. He barely puts pressure on his legs to stand
anymore. On a good note, his X-rays showed a straight back, of
which we are very thankful. He is also the same happy Samuel that we
have always had. He amazes us because he always finds a way to do
whatever he wants done. We know that God is in charge!
|March 12, 2005
||Today the boys finished one of their swim
classes. While Samuel was waiting for Michael he wheeled himself
into the gym to play ball. A really nice lady brought out a little
ball and net for Samuel to use. He was very excited and had a lot of
fun. Also, today was another first for Samuel because he was able to ride
the bumper cars (the kiddie one). He drove with one hand, and pushed
his leg to push the pedal with the other one. It was really neat to
see him do that.
|March 7, 2005
||Let me start by saying, everyday after school,
Samuel begs and cries to go on the big school bus. I really enjoy
taking and picking Samuel up, but he is extremely insistent. The
ladies on the bus have fallen in love with him and they are soooooo nice.
With all that said, Samuel rode home on the school bus for the first time
today. They said he was a little concerned at first when he realized
that I wasn't their, but he did great. I'm so proud of my big boy!
|Feb 26, 2005
||Daddy surprised the boys today with tickets to
the circus. They were so excited. Samuel used his wheelchair
during the preshow to see all the animals. It was great! Check
out the new pics!
|Feb 19, 2005
||Today Samuel had a big day. He started
with swimming at 9 and then Michael's 6th birthday party at 2. We
all went to an arcade similar to chucky- cheese and we had a blast.
Samuel rode the little rides and played a lot of games. Then we all
packed up and went to the Monster Jam. Samuel really loves cars and
trucks so this really made him smile.
|Feb 10, 2005
||Samuel went on his first school field trip
today. He was able to go to the Central Library and then lunch at
Burger King. We all had a great time. I was able to meet some
of the teachers and many more parents. It was a lot of fun. Check
out the pics!
|Feb 4, 2005
||Samuel got his "Rabbit" today. It is
his new wheelchair stander. He really feels the freedom when he is
in it. He smiles so big, and laughs when he "runs" from us. We
are glad that he has it because lately we've noticed that he belly crawls
alot more than he used to. Maybe the stander will keep his legs
||Yesterday was a snow day so today Samuel went back to
school. He says "touch it" so that I give him snow and then he
giggles and throws it at me.
||Samuel got his wheelchair today. He really loves
"running" away from us. He was not very happy when we took him out
|Jan 7, 2005
||Samuel's Started school today. He is in a preschool class
at the local elementary school. They will be working with him on his gross
motor skills along with regular preschool stuff.
||We decided to start this website to let everyone know how
Samuel is. We also want to help anyone else who might wonder about
the regular stuff that happens to a child with SMA.
|Sept 6, 2004
||Happy Birthday Samuel and Daddy!!
|Sept 3, 2004
||Today we got the news that Samuel has SMA Type II.
Our family is being very supportive and we are all "getting through" this.