Samuel's Story
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  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 Wolf ride!
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, so.. weird.
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!
July18, 2008
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 Samuel. 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)


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!


  June 29,2007
  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!
4/28/07 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 cute.


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.


November   25,2006

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.

November  18,2006

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 tricycle.
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.
August 13,2006  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.

"What happened to him?"

"Ah nothing"

"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 sometime.
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 now!
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 the future.
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 for him.
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 stronger longer.
Jan 21,2005 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.
Jan 19,2005 Samuel got his wheelchair today.  He really loves "running" away from us.  He was not very happy when we took him out of it.
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.
Nov 21,2004 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.