Amazing Sam - Fighting Metachromatic Leukodystrophy MLD

Jenna!

2011-08-26T05:37:00.000-07:00

Jenna, please e-mail me. I can't post on your blog and cannot find your e-mail either! czfljo at gmail dot com is my public e-mail. I hope you see this. YOU CAN GET THE LEUKODYSTROPHY RESULTS WITHIN A WEEK!

For everyone else that comes across this blog. You can find Sam through his fan page on Facebook by searching for Amazing Sam!

You've come a long way baby!

2010-10-18T09:12:00.000-07:00

January 10, 2009 8 months post transplant and today October 18, 2010 29 months post transplant.

Was putting Sam in his stander this morning and he was looking so cute I wanted to take a picture of him. Grabbed my cell phone since the camera was out of batteries and snapped a shot. Was thinking about this Blog I started close to 2 years ago and let fizzle so decided to pull it up. Figured I might attempt to resurrect it. Decided to start with a "then" and "now." The phrase "You've come a long way baby!" fits perfectly!!

Day 85 - Bingo

2009-08-15T16:45:00.000-07:00

Bingo! Life on 5200 was made much easier with Bingo. Here Sam is playing Bingo with the cousins! LONG LIVE BINGO!

Day 84 - Easter Eggs

2009-08-15T16:35:00.001-07:00

This was the beginning of Sam's 30 day run of eating hard boiled eggs *EVERY* day

Day 83 - Sam and Sand Hill Cranes

2009-08-15T16:26:00.000-07:00

Sand Hill Cranes show up regularly at Grandma's house. Sam loves going out and feeding them.

Day 80 - The Neo

2009-08-15T16:19:00.000-07:00

Sam is using a Neo to do his spelling and writing. A "c0-writer" is installed which allows Sam to begin typing a word and options are displayed on the screen that allow him to choose the words he wants. Sam is very easily fatigued while concentrating and this has been a really great tool for him.

Day 69 - Yahtzee

2009-08-15T16:10:00.000-07:00

Yahtzee! Candy Land! Go Fish! War! Sam loves them all.

Day 68 - Garden!

2009-08-15T15:56:00.000-07:00

Sam has always enjoyed gardening and the anticipation of harvest time, this year is no different.

Day 67 - Dad & Sam

2009-08-15T15:47:00.000-07:00

Dad & Sam! No other words needed!

Day 57- Pool

2009-03-28T17:51:00.000-07:00

Sam is counting the degrees until the pool is warm enough to go swimming!

Day 56 - Carrots

2009-03-28T17:49:00.001-07:00

Carrots have been off limits since transplant and Sam has not been happy about it! At his 9 month checkup, he was given the ok for carrots as long as they are double peeled.

Day 52 - Us

2009-03-28T17:46:00.001-07:00

Day 51-Spelling his name

2009-03-13T04:21:00.000-07:00

I put a piece of paper in front of Sam and asked him to write his name. I then wrote his name and asked him to copy it. I was beyond stunned, dad was not surprised at all.

Day 49-Pool and cupcakes

2009-03-13T04:18:00.001-07:00

Sam *really* wants to go swimming. He just finished eating a cupcake while hanging his feet in the water.

Day 45-Hospital Homebound

2009-03-13T04:08:00.000-07:00

We enrolled Sam in to hospital homebound through Volusia County schools. Here he is using an adaptive keyboard.

Day 44-Standing

2009-03-05T05:05:00.001-08:00

Weight bearing increases bone density. Here Sam is playing the Wii while standing up, using his walker for support.

Day 42-A haircut

2009-03-05T05:01:00.001-08:00

Sam finally got his first official haircut post transplant by Brenda at BJ's Hair Affair in Forest Park, GA. As she spun him around to face the mirror and asked him what he'd like to have done, he promptly stated he wanted his hair colored. He wanted to be blonde again. While that wasn't possible right now, instead he got a very nice trim. We'll see about blonde hair in a few months....

Day 40-Sam and Anne

2009-03-05T04:50:00.001-08:00

The highlights of Sam's trip to Duke were seeing Anne and eating Peeps. Anne was in training to be a "cruise coordinator." These people are awesome. When we arrived at Duke to see if Sam was a candidate for a transplant, Jayne and Anne were our guides. From coordinating the testings to sitting down and explaining the process, to bringing us coffee after a 7am procedure, to peeking in on Sam while he was inpatient and offering moral support to mom! Amazing women these 2 gals. I'll never forget them.

Day 35-Fish on

2009-02-26T03:26:00.000-08:00

There is a really big smile on Sam's face. That's the best part of the picture even though you can't see it. He does not stay out long when he fishes. Usually 3 or 4 casts, he's done at the first fish or the 4th cast whichever comes first.

Day 34-Dad giving meds

2009-02-26T03:25:00.000-08:00

Mom is still sick, dad takes over giving the meds!

Day 32-Mom wearing a mask

2009-02-26T03:24:00.001-08:00

Mom is sick. Mom wears a mask.

Day 29-Sam Catchin'

2009-02-26T03:19:00.001-08:00

Sam, waiting on a bite.

Day 27-A nap

2009-02-26T03:14:00.001-08:00

During the week, mom makes Sam lie down for 1 hour(mean mom)! Note the clock on the pillow to the left of Sam-there is a folded piece of paper on top of it where I *have* to write down the time he can get up. 4 out of 5 days he's hollering for me as soon as it's time. Not this day! He's snoozin'!

Day 22-Dad helping Sam on Webkinz

2009-02-26T03:10:00.000-08:00

There is simply no greater smile. Dad is helping Sam on Webkinz and Sam just loves watching him get frustrated.

Day 21-Pentamadine

2009-02-14T16:26:00.000-08:00

Notice the big machine to the right of Sam and the bottles further to the right along with syringes. Also note the small machine to the left of Sam and the white box behind the computer. This is monthly pentamadine day. Albuterol is administered through the smaller machine followed by pentamadine through the large one. French doors must be wide open-ceiling fan full power and an oscillating fan pointed towards the door. This is absolute misery for Sam. The taste is horrific, this day it was cold and rainy, it takes about 35 minutes and each time he asks me, "how many more times do I have to do this mom?" Yet, he sits there and does them without a fight but obviously miserable. These days really get to me. I've been told it ends at 12 months.....

Day 20-Sleeping in his tent

2009-02-14T16:06:00.001-08:00

We received Sam's diagnosis of MLD at the end of March 2008. For over a year Sam was having a huge bug phobia at night. At Christmas his grandparents gave him a tent. We set that tent up on his floor and Sam slept in that tent with it zipped up, every single night until we left for Duke. This year Santa brought him a bed tent. Sam loved it...for about 2 nights.

Day 19-Park Day

2009-02-14T15:58:00.001-08:00

We decided to join our homeschool group on a Wednesday afternoon for Park day and Sam wanted to slide down the slide. This was not an easy task for mom.

Day 17-Catchin'

2009-02-14T15:54:00.001-08:00

Sam really comes alive sitting on his grandparents dock. He seems to really enjoy being outdoors and 'catching' fish! Hates fishing, but loves catching!

Day 16-Happy Birthday Grandpa

2009-02-14T15:46:00.001-08:00

Grandpa turns 73. Sam's facial expressions are really hard to read....

Day 14-Playing on the computer

2009-02-14T15:43:00.001-08:00

Though not as much as it used to be, Sam still enjoys playing Webkinz on the computer as well as Jumpstart World, Noggin and PBSKids.

Day 13-Weighing on the Wii

2009-01-30T17:20:00.000-08:00

Day 13-01.22.09 70 pounds and counting.

Day 12-War Wounds

2009-01-30T17:14:00.001-08:00

Day 12-01.21.09

The spots where Sam's central lines were are not pretty. There is nothing "clean" about them. After being in for over 5 months, I wasn't prepared for the way they look.

Day 10-Sleep

2009-01-30T17:01:00.001-08:00

Day 10-1.19.09

"Sleep in heavenly peace." I love to watch Sam sleeping. Sleep helps heal the body. Watching Sam sleep is one of my favorite things.

Day 9-Breakfast

2009-01-26T16:52:00.000-08:00

Day 9-1.18.09

I'm not sure what is the "important" factor in this picture. I'm going to go with the fact that Sam eats 1 pack of cheese grits with 1 TBSP of butter and 1 slice of American Cheese topped with 2 Jimmy Dean sausage links 97% of the time for breakfast.!

Day 8-Nintendo DS

2009-01-26T16:46:00.000-08:00

Day 8-1.17.09

Sam loves playing his DS. Mario Party has not come out of it since Christmas.

Day 7-Meds, Meds, Meds

2009-01-26T16:37:00.001-08:00

Day 7-1.16.09Amlodopine, Reglan, Hydrocortisone, Voriconazole, Omeprazole, Neurotin, Magnesium, Potassium, Baclofen, Acyclovir, Ursodial, Cyclosporine. Along with a Calcium supplement and a one a day vitamin-it's quite the chore keeping up!

2009-01-16T03:51:00.001-08:00

Day 6-1.15.09Clinic day. Sam's port is accessed for weekly blood draws. That's a lollipop sticking out of his mouth. He can't stand the taste that comes in to his mouth when they flush his port with the saline solution.

Day 5-Siblings

2009-01-15T16:24:00.000-08:00

Day 5-1.14.09Anywhere between 6 & 7 Sam asks to go to bed. He spends the next hour or so on the phone with his siblings. The excitement he exhibits when they answer resounds throughout the house. It is awesome to hear Sam *so* incredibly happy.

Day 4-Shoes

2009-01-15T16:17:00.000-08:00

Day 4-1.13.09

Sam’s flip flops-they still have sand on them. I froze the first time I saw them in the closet since being home from Duke. I remember getting so upset with Sam for not being able to keep them on his feet, he would waddle like a duck trying his best to keep them on and my frustration would grow.

Older kids with MLD have described trying to walk. They have a very hard time sensing where the ground is. Whenever Sam would put on a different pair of shoes, he would fall……..numerous times. These flip flops are now in the trash can.

2009-01-14T03:26:00.001-08:00

Day 3-1.12.09 After being in a knee immobilizer for 4 weeks on his left leg for a small fracture on the back of his femur, it then had to be moved to his right for 2 weeks. X-rays of the right did not show anything but there was swelling.

The main reason for Sam's smile is that his brother Adam is in his pocket and Sam just got done singing him Happy Birthday. Those that know Sam know how much he loves to sing. Sadly, he is unable to sing along with the radio right now and to belt out a few phrases of his old favorites required great thought and just does not happen very often.

We are all so very happy that Sam is moving. He seems so much stronger now too!

2009-01-13T17:22:00.001-08:00

Day 2-1.11.09 Mornings...they are our favorite time of the day. 6:30 Sam knows he can come in to our bed. 6 out of 7 mornings each week we hear "I'm Reeeeeeaaaaaaaady" promptly at 6:30. The next 30 minutes are filled with more giggles and belly laughs than we could imagine and gets us(mom & dad) through the day. Sam's neuropathy was so bad prior to transplant, the slightest hug was to much for him. I love mornings now...my son and my husband wrestle, pin each other down and just have a great time together.

2009-01-13T17:05:00.000-08:00

Day 1-1.10.09

"How is Sam doing?" This is an interesting question for us to answer. Sam is doing great for a kid who has MLD. But, Sam has MLD. This is the face we see the majority of the day.