Life with the Langstraats

Let's do 52 - week 6

2012-02-10T07:18:00.000-08:00

This weeks theme was "linear". Slade's mama chose this awesome location for his pictures which happened to fit the week's theme! I love how little he looks compared to the pellets, what an adorable (and good natured) baby!

Let's do 52 week 5.

2012-02-02T23:26:00.000-08:00

I got my picture done on time this week! The theme this week was "get out from behind the camera". For this picture I used my remote, and set my camera on a small chair. I think I'm going to invest in a tripod because this was so simple. Moms (or dads), set your camera timer and take some pictures with your kids!

I love this kid.. he is such a joy to be with.

A thousand More..

2012-01-30T21:07:00.000-08:00

I would like to encourage everyone to take 10 minutes to watch this video about a sweet little boy with SMA, and his amazing family. It gives a real glimpse into the life of SMA. I admire this family so much for being so open and transparent. Especially the dad. It is hard to describe if you haven't met SMA kids in real life.. they are simply amazing kids. They have such a spark to them. Inspiring ♥

http://mediastorm.com/training/a-thousand-more#disqus_thread

New Years recap..

2012-01-29T22:44:00.000-08:00

I dont know the exact total, but what I do know, is that over $30,000 was raised at the New Years Eve Gala. 1/2 for the GSF and 1/2 for Menkes research at the NIH.  More than any of us hoped we would raise. The night was an incredible experience.

It was extremely uplifting to feel supported by the community.    I felt like not only did we raise some money for 2 terribly underfunded diseases, we raised some awareness. Perhaps that is even more important? I know that some people ended up there for a fun NYE party and maybe didn't know or care about the why. But some of them left with a cute little boy's smile in their heads --  maybe even heard the words "SMA and Menkes" for the first time. I appreciated every person who came. Sometimes just "showing up" speaks VOLUMES to me. It shows you care and I loved seeing our supportive friends and family.

Thank you is not "good enough" to express how grateful we are to every person who gave of their time, money, services to make this event so successful. Specifically Trent and Carrie. for carrying out this vision into a reality.

I knew i should've written this right after the gala, but wanted to wait to get a better idea of the amount raised.   Now i am afraid I don't have the right words to convey what a special night this was but I must not put this off any longer... please take a minute to read Baker's mom's  journal recapping the evening...http://www.caringbridge.org/visit/bakerdemeyer/journal

Let's do 52 4/52

2012-01-27T18:23:00.000-08:00

This week's theme "unexpected perspective"

Here is my sweet River Baylen, drawing at his "tiny table" (as he likes to call it). I love this picture because of the bracelet he is wearing. He adores his "Presley bracelet" and wears it every single day in honor of our little friend Presley. Presley has SMARD which stands for Spinal Muscular Atrophy with Respiratory Distress. You can read about her HERE

Let's do 52 week 3.

2012-01-22T14:41:00.000-08:00

This week's pictures didn't turn out quite how I had envisioned, however here we are on Sunday and I still didn't have my picture. My hubby ended up letting me take a quick shot of him a couple hours ago for the theme which is "Negative Space". Isn't he cute?

sleep study and more snow.

2012-01-21T21:11:00.000-08:00

It's been a fun filled week stuck at home due to snow, wind and ICE! brrr.. an entire week off of school for the boys!
Taysen had a sleep study to check bipap settings on Sunday night in Bellevue. TJ had Monday off for the holiday so he was able to drive us down there thankfully.
Taysen woke up with a really congested nose on Sunday, but no other symptoms. I decided not to reschedule since it takes months to get in, and it was too soon to tell if he was coming down with a cold or not. I hope that doesn't affect the results too much.... he was stuffy for a few days, but no coughing.

(cell phone picture) little sweetheart never complains about all that stuff stuck to his head and body. (please note Jackson on the bed :) He makes himself at home anywhere and really puts Taye at ease knowing "the furry beast" is there. (one of Taysen's nicknames for him -lol!) Next time we see the pulmo we will go over the results, but hopefully nothing has changed.

The snow is turning to slush but they sure did have a blast playing in it. (some more sledding pictures....)

fun in the snow

2012-01-16T17:24:00.000-08:00

It's the first snowfall of the year here in Washington! Taysen and River thoroughly enjoyed themselves playing in the snow today ~ check it out!

and yes, River retaliated :)

let's do 52 2/52

2012-01-12T08:07:00.000-08:00

taysen rocks.

2012-01-09T19:55:00.000-08:00

Oh how this kid amazes me. 5 1/2 years ago when Taysen was diagnosed with Spinal Muscular Atrophy, never did I think he would be able to do this at age 7. I don't know where exactly i thought he'd be, but it wasn't pretty. Thank you sweet Jesus for little things like this for they are huge things to me.

Let's Do 52 photography project

2012-01-06T15:51:00.000-08:00

I'm going to do this "let's do 52" project with Paint the Moon Photography I think it will be a fun and a great way to keep myself accountable to take more creative pictures! Each week, you get to pick from 2 themes.. this week's theme is "all natural"

Click on the button to learn more info if you want to join.. everyone is welcome!

I snapped this picture after I trimmed River's hair a bit this morning. Trust me, I wanted to cut it shorter, but this kid is firm on growing his hair out a "yittle bit yonger" like his buddy from karate :) It was all i could do to convince him to a little trim.

I processed this with "wham bam" and "blue raspberry" with adjustments

NYE fundraiser

2012-01-02T11:46:00.000-08:00

when i have the final total, and some pictures to post from Kerri i will let everyone know, but for now: the New Years Ever Gala "Praying for a Miracle" was a total success. It was an incredible night. Both Amy and I felt very supported and so grateful to everyone who contributed to this event. Thank You.....

Christmas

2011-12-29T10:30:00.000-08:00

Our family had a wonderful Christmas. Everyone healthy and happy and under one roof.... what more could you ask for?

#6-special visitor

2011-12-27T09:17:00.000-08:00

Taysen has a special love for my cousin Kenzie. Since she is away at college, he doesn't get to see her very often, so you can imagine his delight to have her stop by for a visit! Oh, how he loves his "girlfriend"! Thanks for the visit Kenzie! (and you too, Tessa)!

#5

2011-12-23T22:23:00.000-08:00

Something we love to do is take walks along the trail by our house. We like to take Jackson with us because he is always the first one to spot when a squirrel is nearby. We are thankful for the dry weather, but it is starting to get cold! We came home from our walk and Taysen said that he had to bite his hands because they got so cold. He meant that they were frostbitten, but he couldn't remember the word. (hahaaha!!)

please note the hat that Taysen is wearing. He refused to wear it for the longest time because he thinks those strings hanging down make it look like a girl hat! (?) i pointed out the skulls and mohawk and he finally agreed to wear it. he is also refusing to wear any shirts with buttons and or tags. ....sigh....

Also.. that is not a purse River has around his neck. it is a SATCHEL

Standing Dani

2011-12-22T09:51:00.000-08:00

Not a Christmas post, but here is a video of Taysen during the summer in his power stander. These babies cost an arm and a leg and are not covered by insurance... our friend Drewbie's nana, shipped this to us all the way from Minnesota for Taysen to use since Drew (who also has SMA) couldn't use it anymore. Thank you nana Barb! You are so generous!!! Drew is absolutely hilarious and reminds me so much of Taysen. We hope to get the boys together some day soon.

#4 Christmas Cookies

2011-12-21T09:22:00.000-08:00

This year I made it easy on myself and bought some sugar cookie dough from River and my favorite place --Great Harvest Bread. The best frosting I have found is from Trader Joes. It's the white frosting mix in the box and you add butter and hot water and it is really good. The kids ate half of the frosting and candy per usual, but they had a FUN time which was the whole point!

#3 decorating the tree

2011-12-19T18:17:00.000-08:00

This is what your tree looks like when you let a 5 and 7 year old decorate it... there are clumps of 4-5 ornaments sporadically hung on the tree.

Also? they are all waist high. (hahaha!!!!) adorable.

#2 --Christmas Puppies

2011-12-18T20:18:00.000-08:00

The highlight of today was cuddling some brand new puppies. Thelma had babies last week! As you can see, they are simply adorable, and my kids really, really really would like to keep one for themselves. I told them that Jackson would feel left out if we brought a new puppy home but River was willing to trade Jackson in for a new puppy.

Taysen

River

Paige, Tawnee (puppy owners), Me

Kids

All cuddled in a stocking!

day #1

2011-12-16T19:12:00.000-08:00

One of the reasons i got into photography is so i could take better pictures of my kids. Not a huge surprise that i have been seriously lacking in that department. A lot of crafty people i know do the picture a day of Christmas and make a book out of it. I'm not too crafty but I thought it would be fun to take a picture or 3 of my kids every day this Christmas break (which officially started at 3:10pm today)

Both the boys were very excited for the Christmas parties today at school. One of the times i rolled Taysen in the middle of the night he said while half asleep "is it time for my party yet?" It was also pajama day today! Taysen wore his, and River had his favorite monkey jammies on all ready to go and then at the last minute he decided to change because he thought all the kids would laugh at him and think he looked weird (???) he doesn't like to draw extra attention to himself :)

We are looking forward to the next 2 weeks of hanging out, baking, reading, movies and the works. Feeling extremely THANKFUL for our health. I think health is something that people take for granted but please remember that everything can change in an instant. Praying for all of our SMA friends that are sick right now, many of whom are in the hospital.

River enjoying a hot cocoa after school.... with marshmallows AND whip cream!

Taysen's gingerbread house he made today. I don't even want to know how much candy went into his mouth instead of on that house!

stander time

2011-12-14T19:53:00.000-08:00

Just an average Wednesday afternoon at our house.. Taysen is in the stander. Playing with his animals. Sometimes he plays the wii or watches a movie to pass the time in the stander, but today he wanted to play with the deers.

A family of deer, and the large "dominant" (in his words) male is protecting all babies and females.

River likes to play animals too.

And where there is Taysen, there is Jackson. He likes to be included

Taysen Reading

2011-12-07T18:27:00.000-08:00

here is a quick little video of Taysen reading for his homework just now. he has always enjoyed books and reading. to my knowledge, he has yet to check a book out of the library that is not a non-fiction book about ANIMALS! If there is ever anything you want to know about animals, he's your guy.

2011-12-05T13:20:00.000-08:00

Take a close look and you will see....

...Little brother River taking the wheels for a spin.

I love this video so much... makes me giggle every. single. time.
You see, River has always been envious of Taysen's wheels. He has even said before how he wishes he couldn't walk, so that he could have a scooter of his very own. (we had a tallk about that away from Taysen) He is always hitching rides on the back and begs to drive it himself. While we let him play around in the manual chair, that wasn't enough for our little speedster. I promised him that he could drive Taysen's scooter when his new one came. He looked forward to this for a long time, and finally he was allowed to go for a spin! We waited until Taysen was at school, ( 2 kids in powerchars?? no thanks) He had a big grin on his face the whole day.

New Years Eve Gala

2011-12-03T11:39:00.000-08:00

It is the month of the New Years Eve Gala! A lot of people are working very hard to make this a special and memorable evening. For more info on the event, and to purchase tickets, please click HERE

The proceeds will be split between the amazing Gwendolyn Strong Foundation and the Menkes Foundation in honor of the one and only Taye-Taye and our friend's 4 year old, Baker, who is living with Menkes.

There will be a live band, appetizers and many fabulous auction items (list coming soon) There is also going to be a photo booth there, which i am really excited about.

If you have contacted me about donating an auction item, i will be getting in touch to plan a pick up and also give you a receipt for tax write off. If you would like to donate something, please email me!!

Special and huge THANK YOU to Trent for having this idea and running with it.. and CARRIE at the Reserve for all of the hard work, planning and time you have put into this event. More money for SMA organizations means more money for research... bringing us closer to a treatment and cure!!!

2011-11-19T07:58:00.000-08:00

Getty's mom wrote this, and I am sharing it here because I completely agree... this is something I think about often.

An Unscientific Opinion

From Kate:
November 12th was World Pneumonia Awareness Day. I read an article about how children are dying at alarming rates due to pneumonia and it brought back some lingering thoughts I have always had since Getty’s diagnosis. I know that many third world countries are suffering and need vital support to combat pneumonia, but I also wonder if it possible that more SMA children are out there but are not diagnosed in time.

Since truly digesting Spinal Muscular Atrophy, as a mother, I tried to really find some kind of clarity. I needed to know why I had never heard of this disease. I needed to be convinced that Getty was not just victim to a “orphan” disease. I needed to figure out why awareness of this horrible disease is lacking nationwide. When I start sleuthing, I didn’t stop until I was satisfied. So in my unscientific opinion this is what I came to.

I think there is more SMA in the world than we realize. I can’t help but think if children were accurately diagnosed then perhaps there would be a bigger urgency on a government or national level to find a viable treatment or cure.

Let me give two scenarios that stick in my head that I believe, again unscientifically, might actually be a misdiagnosed case of SMA.

1) Getty was diagnosed when she was 4 months old. She has always been a very healthy and robust child. Let’s say, hypothetically, before her diagnosis she got sick and it turned into an aggressive upper respiratory pneumonia. Mark and I would of taken her to the hospital and let the doctors do all they could to get her “through the woods”. Let’s say they were unsuccessful. For whatever reason the pneumonia was too much to handle. Getty would have passed due to pneumonia. I can tell you beyond a shadow of a doubt, the conversation in the hospital would not have evolved into a discussion about genetic diseases and Spinal Muscular Atrophy. We never would have known that SMA was the catalyst to aspiration pneumonia. We would have gone on with life without even realizing that we were both carriers of the #1 genetic killer of young children.

2) Since Getty was diagnosed at 4 months, with me as new mother stumbling through parenthood, I could have accidentally suffocated her. Sudden Infant Death Syndrome (SIDS), from what I have learned, is still an unexplainable sudden death of a child. So what does this have to do with Getty? We know SMA restricts lung capacity of children, so they rely heavily on the diaphragm to breathe. So let’s just say, hypothetically, I left Getty to sleep on her tummy in her crib before her SMA diagnosis and before she got a pulse oximeter to monitor her vitals at all times. We would have never known if her oxygen levels dropped and doctors may have attributed it to SIDS. Again we would have never known that SMA was the catalyst for her passing.

I am not trying to suggest that all cases of infant pneumonia or SIDS is to unidentified SMA child, but can you see how in some cases it might? These are just my unscientific thoughts, but I figured it was something to at least throw out there for discussion.

I wonder if children were diagnosed with SMA earlier and if there was more awareness, perhaps we would see a bigger push for treatment and cure of the #1 genetic killer of young children. Perhaps people would be aware that they have a 1 in 40 chance of being a carrier. Perhaps SMA would no longer be considered an “orphan” disease. Perhaps SMA would be cured.

taysen "ice skating"

2011-11-17T19:55:00.000-08:00

I use my little flip cam a lot.. i love looking back at videos of my kiddos. time goes by so fast and no matter how hard i try to savor the little things, i am sure to forget them. sat down tonight to upload some videos to my laptop and this one made me smile :)

just a quick update:

Taysen is doing well in school. He is an excellent reader and has lots of buddies. He started a modified schedule recently because he was getting pretty tired in the afternoon. Tues and Thurs he is going from 10-1 which works out well with the lesson plan. Hopefully this will allow for more stander time and more time out of his chair. It is getting a little difficult for me to get him in there by myself so I will be looking into a new stander to make that more achievable. he has also cut way back on PT due to time constraints.. my goal is to start doing more with him here at home. I have slacked off on this and that is not okay. Did i mention that he got a new powerchair? we LOVE it... .it's like a cadillac of powerchairs and is allowing him more independence with moving his body. pictures of it soon!

New Belt for River

2011-11-05T19:49:00.000-07:00

River doing a front snap kick and a round house kick during his belt promotion test.

upward blocks

I missed my opportunity to get another picture of him breaking the board, but he did it!!! He is holding the board in the black and white picture.

Master Burger taking off his orange belt and putting on his NEW purple and white belt!

We are SO incredibly proud of our boy... and more importantly, HE is proud of himself. He has worked very hard in all aspects of Tae Kwon Do and has gained so much confidence. Way to go River!

Halloween

2011-11-01T21:37:00.000-07:00

Storm Shadow (River) and Snake Eyes (Taysen). Jackson was a bull with a cowboy strapped to his back-- He looks humiliated doesn't he?!!

This is our first Halloween living in town, so the boys went trick or treating yesterday in our neighborhood. They developed a plan for River to go ring the doorbell, they both would yell "trick or treat" and then River would take a candy for himself and one for Taysen. Made me happy watching my boys having so much fun, and Taysen even declared it the best day of his life.

New Years Eve Gala

2011-10-19T12:09:00.000-07:00

I wanted to take a minute to give everyone a heads up about an upcoming event. Our friend, Trent has decided to take on a huge project of organizing a fundraiser to benefit two charities.
.
Some friends of ours have a smiley little boy named Baker. Baker is 4 years old and is living with Menkes disease. You can read about this little hero HERE. Half of the proceeds from the event will benefit the NIH Menkes research, and the other half (in honor of Taysen) will benefit the Gwendolyn Strong Foundation for SMA research.

There will be dinner and an auction and it will be at The Reserve in Lynden. If anybody is able and willing to donate anything, please let me know and I will get you in contact with Trent! It could be a service, item, tickets.. anything really! This is a great opportunity to enjoy a night out and also help out with funding research for SMA and Menkes.

River's first field trip

2011-10-17T10:09:00.000-07:00

River got to go on his very own field trip! He always got to tag along with Taysen's class last year, but he was so excited to go on his very own this year.

He absolutely loves kindergarten, and although i occasionally hear the boys make plans to meet up at recess, i think he is enjoying some independence from big brother.

2011-10-15T13:26:00.000-07:00

(this is Mrs. Kok, Taysen's amazing 1st grade teacher. This pic was taken before our race and I thought it was so sweet to send me a picture of them together in their matching shirts. We are so thankful to have such a supportive and flexible teacher for Taysen this year. He loves her!)

Taysen has had a tiring couple of weeks. I picked him up from school a couple weeks ago and he immediately told me he had a headache and wanted to take a nap. We got home, and he slept for a couple hours and woke up with a fever. It reached 104.7 that night along with a terrible headache. I hate seeing him like that. All he wanted to do was rest on the couch :( I know i occasionally ask for some "quiet" from this boy as he talks every second that he is awake, but i quickly eat my words when i see him so miserable.

I did talk to Children's but considering it wasn't respiratory i decided to keep him home. He recovered over the next couple days.. and then the coughing started. He has been feeling great, yet struggling with a productive cough for about 2 weeks now. We are doing nebs/chest PT/coughassist treatments q4 hours and really hoping to get rid of this thing soon! Once again I am reminded of my great LOVE for the cough machine. He is feeling great, just a lingering cough that for any other kiddo would be no big deal.

Times like this I am so thankful for Taysen's abilities. Kids with SMA type 1 are not even able to swallow their secretions or cough AT ALL. you can imagine how terrifying and exhausting it is for them to deal with any case of the sniffles.

Here's my annual reminder.... Wash your hands, friends! Cough in your elbows! If you are sick, *please* don't come around Taysen! Get your flu shot!.. etc. etc. (you get the idea!) Hoping and praying for another healthy year for our Taysen and many thanks for your understanding of me being an ocd germ freak.

Part 2

2011-10-01T11:19:00.000-07:00

A bunch of pictures...

This is my little sister Riley... it was her first race and she did awesome!

Kandi at the finish

Kaedan. His mom Nikki ran the 5k but since we started at the same time as the 5k, no pictures :( thanks for running, Nik! Also, my grandma and Aunt Judy and cousin Hayley walked the 5k. Thanks ladies!

Gigi finishing strong

One of Taysen's teaches, Miss Luce!

My older sister, Mia and her friend Kari walked the half!

Kelli at the finish!

This is Brandon..he met Taysen for the first time when he printed our shirts for us. (thanks RECO) He felt inspired, and decided to run the full marathon after absolutely no training! I can't believe he finished, but he did! And helped us raise some money also!

Me and Tawnee right after we crossed the finish line

My dad finishing the half. Apparently that guy next to him really wanted to beat him!

Mia, Jay, and Kari

Kristen and Eric there to cheer

Kaycee and Kaleeyah were there to watch the finish!

Tj's dad, "papa Jed"

Riley

Bellingham Bay Marathon Pictures (part 1)

2011-09-30T20:24:00.000-07:00

Every person at the race on Sunday has a special place in my heart. You all showed your love for our Taysen. By doing something many of you never wanted to do. Something that you never thought you could do. By simply "getting it" and being there..I am so thankful and happy to report that we collectively have raise just under $8,000 for SMA research! (www.firstgiving.com/fundraiser/taysen/runfortaysen )

Taysen at the first spot where our family and friends were waiting for us. Mile 3 i think?

Some of our fans! Tawnee's family, mine, mom and dad in law, and Kells/Kandi were at the first stop.

My mom (Gigi) ran the half marathon and shaved quite a few minutes from the first half she did a few years ago. Great job, mom!

Tawnee and I. I think she could run an ultra marathon and not even break a sweat! A total rockstar

Kelli ran with her sister in law, Melissa. Kelli used to hate running :) I think she secretly loves it now.

This is Kandi. She is the girl who never gives up! It was fun for me watching kelli and kandi go from grumbling about running and barely making it through 4 miles to rocking a half marathon with smiles on their faces!

Jay ran his first half too, after working all night before the race. He loved it and did a great job!

Carter and River

Taysen and River.

TJ took all the pictures and got as many as he could of everyone... the 2nd half up next!

marathon DONE!

2011-09-27T18:01:00.000-07:00

and I'm a little sad about it...

... The reasons behind the decision to do this marathon made this such an emotional and spiritual journey for me it is difficult to put into words.

I have a ton of pictures to post of our huge and amazing Team Run For Taysen... but it will have to wait for now, my sweet River got the stomach flu, and I have been busy caring for him and disinfecting in hopes to keep it from Taysen.

I know many of you were praying for us on Sunday, so I wanted to share my favorite picture of me and Tawnee crossing the finish line. More to come!

2011-09-23T22:33:00.000-07:00

*blogger is not letting me create paragraphs tonight* that's why this post is so squished together.

only TWO more days until the race!

I am so thrilled that we have met our commitment to raise $5,000 as part of the 200 Commitments for SMA. We are currently at 5,827 dollars (and climbing)

THANK you to each and every one of you for supporting us in any way you are able! Of course we are happy and grateful to raise money for a wonderful foundation, but simply raising awareness for SPINAL MUSCULAR ATROPHY is the ultimate goal.

Saturday, September 24 there will be 2 ways to support us

1: We are having a car wash on the corner of Grover and Hannegan from 10:30-2:30. Taysen and his cousins are also putting on a concessions stand (which Taysen calls a "concussion" stand) where they will be selling candy and drinks.

2: SUNSHINE COFFEE will be generously donating 20% of their proceeds to our Run for Taysen fundraiser! (www.firstgiving.com/fundraiser/taysen/runfortaysen) How awesome is that? I know I will be getting myself a latte there tomorrow, and Taysen and River will probably get treated to a "pink soda" as well... THANK YOU Sunshine Coffee!

I can't wait for Sunday... (mostly for AFTER the race is over) but also to do something that never in a million years did I think I could do. I will be thinking of all of the sweet and spunky SMA kiddos we have become friends with, and the many angels taken too soon while I'm running... Thank you for your support!

ELEVEN more DAYS

2011-09-14T23:13:00.000-07:00

until our BIG RACE! I am happy to say that we are 85% of the way to our goal having raised $4,265 for Sophia's Cure Foundation. I am so thankful for everyone who has donated, shared the link (www.firstgiving.com/fundraiser/taysen/runfortaysen , sent out emails, and posted to facebook. All of these things have contributed to us (almost) reaching our goal!

This picture was taking after Tawnee and my 20 mile run. We are in our taper period now, to rest up our legs until the marathon. Kandi and Kelli, who are running the half marathon, ran part of it with us, and biked the remainder. Thanks girls! It is so nice to have the support... running for those little heroes who can't is WHY we are doing this. TAYSEN is my hero.... always will be.

back to school

2011-08-28T10:14:00.000-07:00

guess who is starting kindergarten in just a few short days......

.....this monkey right here. I am excited for him to start this new adventure. and kinda sad too. Hope i don't cry on his first day.

And this guy right here (who was not in the mood for a picture) will be headed to the FIRST grade.

Over the past few weeks, Taysen got all caught up with the 4 doctors he sees at Seattle Children's Hospital. He has remained fairly stable. His spine is at about a 8-12 degree curve, and his right hip is coming out even more, but this is not a shock to hear. His range of motion all looks great, and the pulmo was happy with his air movement in his lungs. He has been a little extra floppy and tired at the end of the day lately, so we are going to set up another sleep study to check if any bipap settings need to be changed. And just in case my husband "forgets" he offered to do this sleep study with Taysen i have it in writing :) He also had labs done as much as he tried to keep it together, he just can't. He didn't say any bad words this time, but he did yell in the midst of an absolute tear filled meltdown.. "JUST DO IT ALREADY MAN!!!!!!!"

Run For Taysen T-Shirts

2011-08-15T11:26:00.000-07:00

Last weekend was our longest run to date......16 miles! I can't believe that i'm still alive after that.....but I am, and it actually wasn't as bad as i thought it would be. I guess (i hope) that means i'm improving. Carter rode his bike with us, and Kelli (who is running the half) ran with us the first 6 miles. Then Carter and Kelli traded spots so we had company those last 10 miles as well. To read about why Kelli is running for Taysen, click HERE

I am so excited that our Run For Taysen T-SHIRTS are in! I love the way they turned out, and have the amazing Ashley Jones to thank for the awesome logo. Ashley is a graphic artist with a precious daughter with SMA type 1. To read about Skylar, click HERE. Ashley's website is HERE

If you would like to order a T-shirt, please contact me at langstraats@hotmail.com. I am going to be placing another order next week. They are $13. Charcoal gray for adults, and teal blue for kids. (excuse the cell phone pics)

Thank you to everyone who has taken the time to donate! We are getting there! To visit our race page, click HERE

Who is at risk for SMA?

2011-08-02T20:46:00.000-07:00

August is SMA awareness month

Please read THIS ARTICLE which explains in detail your risk of being a carrier for SMA.

Guess what...

...If you are related to TJ or me, you may be a carrier! In fact, 1 in 35 people are unkowing genetic carriers for SMA. Please educate yourselves. Don't think this couldn't happen to you! Knowledge is power, friends!

Happy Birthday Taysen!

2011-07-19T08:41:00.000-07:00

Taysen at age 7 ....

FUNNY. vibrant. full of life

Loves people.

Loves chocolate milk, strawberries, noodle soup and peanut butter and honey sandwich.

Enjoys playing wii in the stander but only 2 games. Sim animals Africa and bull riding.

Loves to play on the IPAd and his favorite game is the hunting game where he gets to shoot bucks

Is an excellent swimmer.

Tells us numerous times a day how much he loves us.

LOVES his dog, Jackson, and one of his favorite things to do is to lay next to him and pet him

Sometimes calls people "humans" and says "cheechother" instead of "eachother"

Will sit on the floor and play animals for hours. He has a huge collection of animals and sets them up into families.

Loves to play "rodeo" where he is the "rodeo announcer" and will often request that one of us sings the national anthem to prepare for the rodeo.

I mostly took video on his birthday so there aren't too many pictures. Please note the cake that Taye specifically requested. He asked for his dog (chocolate lab) and carrots. (?) so that is what he got!

HAPPY BIRTHDAY TAYSEN!! WE LOVE YOU

13

2011-07-17T12:42:00.000-07:00

13 miles done today! We are feeling pretty good about the way things are going. The cute boy in the picture is my nephew, Carter. He rode his bike with us the whole time and carried water bottles and snacks in his backpack. Thanks Carter!

Thanks you everyone who has donated to our race. Every cent is appreciated and I am so thankful for each and every one of you. www.firstgiving.com/fundraiser/taysen/runfortaysen

Marathon Training

2011-07-14T12:51:00.000-07:00

An Update on the Running.....

Well it's week 8 of the marathon training. For you runners out there, we are doing the Hal Higdon Novice 1 training schedule . Things have been going relatively smoothly so far! Neither Tawnee or I have gotten any injuries aside from the usual aches and pains associated with long distance running.

Typically, I feel amazing until about mile 9. Then I start to get tired, and thirsty. Really thirsty. And kind of hungry too. Also, my legs start to get heavy. Hopefully my endurance starts to kick in soon because there is still 10 weeks left of long runs! Yippee!!!!

I have to say that raising MONEY and AWARENESS to find a CURE for SMA has made everything worth it! I am proud to say that we have added 5 runners and walkers to our team with some more possibly signing up! We have raised $780 in just a couple weeks! Thanks you everyone for your support!

All money raised goes to Sohia's Cure who has commited one million dollars to Dr. Kaspers gene therapy program at OSU. To donate, please click HERE

Taysen Swimming

2011-07-11T08:43:00.000-07:00

The only time his body is truly free to move how he pleases. He absolutely loves to go swimming and so does River. Quite the accomplishment for a kiddo who is immobile on land. Enjoy the video!

Run For Taysen...

2011-07-01T08:14:00.000-07:00

So here it is. The first fundraiser for our 200 for SMA I am running the Bellingham Bay Marathon on Septmeber 25. I am so very thankful that my sister in law Tawnee is running it with me.

I want to say a special thank you to you Tawnee for not only being so supportive and such a cheerleader to Taysen, but also being invested in SMA by learning about it and researching treatments. Thank you for being such a good sport and taking on 26.2 miles with me!

HOW YOU CAN HELP: Consider making a donation! 5 years ago when Taysen was diagnosed, people would often ask "what can I do to help?" I simply did not know how to answer that. I had big ideas for fundraising back then but they fell by the wayside as our family simply tried to keep our heads above water. We are in a good place right now and felt it was time to raise some bucks. I am not kidding when I say this. No amount is too small! If you can only afford 5 bucks then we will greatfully accept it!

I am scared. Nervous. Maybe even a little excited. I know I can do this and will do anything for my son, or any SMA kid for that matter. I know Taysen would be outside running with me if his body allowed him. Please read our race page, by clicking the link below and consider sponsoring us in our quest to raise awareness and money for gene therapy.

FirstGiving - Your fundraising

200 COMMITMENTS

2011-06-27T12:00:00.000-07:00

Our family is so excited to join the "200 Commitments For SMA". Sophias Cure Foundation started this goal of raising one million dollars to get Dr. Kaspar's gene therapy program into the SMA population in 2012. You can imagine how extremely frustrating it is to have such promising data, and a full reversal in an animal model yet be held up by funding. This is not acceptable. I will be updating soon, with info on how to donate to our very first fundraiser for this project.....

Please read about the 200 commitments and all the AMAZING families here

Also, please read this information on the gene therapy program here

Orange Belt

2011-06-25T19:01:00.000-07:00

I am so proud of River. Last week he tested for his orange belt in Tae Kwon Do and he got it!!! He was so brave going in front of all the Masters and all the families and other students. I know I wouldn't have been able to do that at 5 years old!

Getting ready for testing to start.

Here he is with instructor David bowing to the masters. To begin class, or in this case testing, the master says something in Korean (i don't know what) and the kids have to say "focus and concentration, Sir" and then bow and say "courtesy and respect, Sir" So cute watching my little monkey do that!

Here he is doing his form.
Yes, he had to break a board with a side kick!

.. and he did it! I love this picture. I think i'm going to enlarge it and hang it in his room.

The 2 little boys staring at their boards. I think they were in awe that they actually did it!

Getting called to the table so Grandmaster Na could talk to River about life skills, respect, and Tae Kwon Do. He was very thorough and told River that for every hour he watched TV or played video games, he had to read an hour. :)

Instructor David putting his orange belt on!

Way to go River!

school's out for summer!

2011-06-15T15:09:00.000-07:00

Taysen had his last day of school today! He will be in 1st grade next year and I can hardly believe it. He had his own aide at school, which I think worked out excellent considering he had no major illnesses and no injuries.

He came home with a phone number from a little girl in his class. If you don't know Taysen then you don't know that he is a total ladies man.... so cute how she wrote it out on a piece of paper in messy little kindergarten handwriting for him to call this summer :) and he won't forget either. He will ask me two thousand times until he has a playdate with this girl!

Some goals for Taysen this summer are: 1-more standing. Taysen has lost about 3 pounds since we implemented his new diet and therefore it is easier for me to get him in the stander by myself. 2-more tummy time- He doesn't like this, but i am able to get some more time out of him by doing this.

3-more swimming- Taysen can swim all by himself with no flotation device. He kicks his legs all around, something he cannot do on land. 4-more stretching. His feet are getting pretty tight. And the last and most important one is to eliminate all the sassiness he picked up in kindergarten! I think the first week at home will be a little rough but i know the summer will go much smoother if we work out all the kinks right away.

Brynlee Belle...

2011-06-10T16:04:00.000-07:00

It is with a heavy heart that I share this obituary of our little angel, Brynlee. She unexpectedly passed away on Monday from complications of SMA and left a broken family behind. I am devastated for the loss of this little princess and to see my friend hurting so badly is just too much. please keep them in your thoughts and prayers and take a minute to read about her amazing life. I freaking hate this disease!!

BRYNLEE LISTON
Brynlee Belle Liston 2007 ~ 2011 Brynlee Belle Liston passed away peacefully surrounded by her loving parents and aunt on June 06, 2011.Brynlee was born on August 29, 2007. At 5 months old she was diagnosed with Spinal Muscular Atrophy and her valiant fight began. Though her time here was short, Brynlee forever changed the life of anyone she met. Her intelligent eyes and sweet smile would melt the hearts of those around her. Although Brynlee's illness made her appear frail, she possessed an incredible strength of will, perseverance, and the ability to overcome incredible odds and challenges. Some of her favorite things were playing with her baby sister Nakota, watching Spongebob with her Daddy, snuggling for hours with her Mama, and of course Cinderella. She recently got to have her first sleepover with her Aunt Tasha and her cousin Mia and she had the best time ever doing the things that other little girls get to do. With Brynlee's passing, we are reminded that her life is one to be celebrated. The simple joys that she took in every moment and the laughter that she met life with are lessons that we can all thank her for. Although she will be missed each and every day, we will forever hold her in our hearts and remember the pleasures she found in life around her. Brynlee leaves behind many amazing caregivers. Her wonderful pediatrician Dr. Tanya Jackson, her loving and very special Nurse Robyn, so many home care therapists and caring staff at Primary Children's Hospital, all treated her with an amazing respect, love and support that greatly enhanced her quality of life. There is a special place in our hearts for Dr. Kathy Swoboda; because of her continued dedication, love and support Brynlee was able to beat some of her toughest medical challenges. Although a cure was not to be found in time for our Angel, we know that through the dedication of the medical community a cure for Spinal Muscular Atrophy will be found. Brynlee is lovingly survived by her parents, Mark and Tara Liston, her baby sister Nakota, her grandparents, aunts and uncles, and her cousins. A private memorial celebration will be held for close friends and family. Online condolences may be shared with the family at http://www.larkincares.com/

2011-06-05T11:44:00.000-07:00

30 hours in the car with a 5 and 6 year old... doesn't get much funner than that. We are lucky because our boys are excellent travelers. They watched a lot of movies, and we took quite a few breaks. Taysen had to be repositioned quite a bit this year. We tied his chair down and he sat in a carseat next to River but his knees and legs were hurting him a bit :(I love this face

when we arrived in salt lake city we got to see our friends, the Liston family. Brynlee and Taysen were so cute driving their chairs around the driveway. Makes us wish we lived closer.. it is awesome hanging out with another SMA family. LOVE you guys!

of course, buzz and woody made the trip as well.
this kid is such a goofball.

zoo

2011-06-05T11:11:00.000-07:00

we spent an afternoon at the zoo before we checked into the hospital. My boys would go to the zoo every day if they could --they love all types of animals!

someday i will get a picture of me and my boys where nobody is making a face.

my sweet Taye Taye
River's nickname is monkey.. he LOVES all things monkey
daddy's boys

Utah

2011-05-31T19:05:00.000-07:00

well it's been a while. Again. I am going to do a better job of blogging for my own self! I can hardly remember anything these days! Our family recently took our annual trip to Salt Lake City to see the SMA specialists. It's hard for me to believe that Taysen has been on VPA for 4 years now....just a tiny little 2 year old now my big 6 year old. I wasn't sure what to expect from the testing this year. At times I think he is doing so well... some things even stronger than last year; on the other hand I have noticed him struggling with some things this past year as well. Taye has had a tremendous growth spurt this past year.. both in height and weight and that definitely affects his strength and endurance.

Here he is getting the EMG which showed that he has MAINTAINED since last year. The remaining nerves have sprouted which is great because SMA is a motor neuron disease.. the nerves typically die which results in muscle atrophy.

Monitoring oxygen levels since he was on Versed. We all get a good laugh at his expense when he is on Versed. He is a funny kid as it is, so you can imagine the things that come out of his mouth on drugs!

The main problem we are running into is Taysen's weight. He has gained so much weight this year.. he has doubled his steroids for his adrenal disease, and also VPA can often cause weight gain. This is not good for his weak body.. it makes things worse and more difficult to move, more pressure on his spine which can increase scoliosis, etc. We are going to keep him on the drugs and really, really, REALLY watch his diet and re evaluate his weight in 6 months. Taking him off drugs is just not an option right now. it really freaks me the hell out. so our little man is adapting a diet of steamed veggies and fruit and he is being such a good sport. so far.

getting measured

For PT he has also stayed stable. He might have even scored one point higher than last year, but i couldn't find the report from last year. Here he is doing his manual muscle testing.

DEXA scan.

River is always such a great distraction for Taysen. He is always ready to play animals with Taysen or they will just sit together and talk. My little monkey man is a special little brother.. always right by Taysen's side during any procedures. unless he crying. Then River plugs his ears and leaves the room. :(

Overall, a good report. We have much to be thankful for. That little boy means the world to this family! To hear that he is stable, gives us much strength and hope. We Love Taysen!

two cowboys....

2011-03-13T19:35:00.000-07:00

2011-02-27T16:43:00.000-08:00

My big Kindergartner got to make Valentines Cards for his classmates this year.

My boy was so determined to carefully write each and every classmate's name *and sign his own name too! It took him so long, yet he was determined to do it himself.

And he really did. Each and every one. Made me so proud. So thankful that he is able to do things like that. We do not take handwriting for granted in our house.

A reminder for all of us: cover your cough with your elbow: not your hand. Wash your hands often to reduce the spread of germs. and PLEASE don't go out if you are sick! Having a healthy child that is sick is an inconvenience and not fun.. Having an SMA child that is sick is scary!

2011-01-31T14:43:00.000-08:00

Taysen has been doing really well lately... he has had 2 colds so far this year and was out of school for about a week with each one. Thankfully we have been able to manage his illnesses at home thanks to the greatest machine ever invented ---->the cough assist. Hate that he has to use it, but boy is that big heavy thing a life saver-- quite literally.

He is also utilizing his bipap more often when sick and really does not complain about it anymore. Today I picked him up a couple hours early from school because the nurse called saying she sent home a classmate with a 102 fever. I have been really impressed with everyone at Isom. The nurse had never heard of SMA or CAH before Taye started school and she has educated herself and truly understands why illnesses can be so critical for Taysen.

I have had a great time helping out in the classroom at school. It has been so much fun watching Taysen with all the kids. He truly, truly enjoys school and i can see that he brings much joy to everyone at school just like he does in our home.

River has been counting down the days until he gets to go to school next year. Until he remembered that he has to get "school shots" before going to school. He has now decided that he "doesn't really want to go to school anymore" because he "doesn't really like shots and is just fine without them" !

January has been a difficult month in the SMA community. Eight children have passed away in one month. Talk about a sickening feeling, to log onto facebook and read info like this... literally breaks my heart. Taysen will be 7 in July which makes 5 years since he was diagnosed. At that time, there was a lot of stuff written about a viable treatment option within 5 years. That 5 years will be here soon and while there is still no cure, there is lots of good stuff going on in labs, really excited and hopeful.

every buck helps. truly. 2 foundations we support which donate 100% proceeds to treatment and cure based therapies are http://www.gwendolynstrong.com/ and http://www.sophiascure.com/ should you feel lead to support these charities.

sledding fun

2010-12-20T13:32:00.000-08:00

Taysen is officially on Christmas break from school.... now he is just waiting for some more snow so he can so some more of this..... It is so much fun watching these crazy boys have such a good time! The laughter was nonstop as you can see from the pictures
TJ drilled some holes in the sled and tied the child rite seat (which is like a big bumbo) to the sled. The was the first time Taysen has been able to sled down a hill all by himself!

River loved it too but is usually the first one ready to come in for some hot cocoa :)

We went to see Yogi Bear for our sweet nephew's birthday party over the weekend. As I watched Taysen having the time of his life with all his cousins, munching on popcorn, watching the movie (all of his favorite things) I became so overwhelmed with thankfulness that my son is able to do all of these things. He's able to sit up in his chair for an entire movie and longer... he can eat popcorn, he can be independent, can talk, and tell jokes and is such a genuinely happy kid. God is good.

sick

2010-10-31T23:20:00.001-07:00

Taysen is sick :( no trick or treating for my wherewolves tonight. River came down with a nasty cough on Monday, and Tuesday Taysen got a 104 fever.... we have been doing lots of nebs, chest PT and coughassist. He's on bipap now and is satting a bit lower than normal but not too bad. Hopefully tomorrow will be a better day. More resting, movies, books, and gatorade I think.

blogging break

2010-10-21T22:37:00.000-07:00

I have no excuse for my pathetic attempts at blogging. I really intended to use this blog as a means to document Taysen's story, the good and the bad that comes with SMA. I don't think I do a good job at that.
Sure, I like to post pictures and write about the adventures and how well Taysen is doing; but you know what? Sometimes, he is not doing so well. Sometimes, it is overwhelming. Sometimes, I am angry with this disgusting disease and so then I don't write.
But.
Always, I am thankful for this boy.

These pictures were from Taysen's first day of Kindergarten! (I know, I'm really behind here) His powerchair was in the shop for the first couple days of school, so that was a bummer. I am so glad we recently got a manual chair for a back up. This chair is a Ti-Lite AeroZ. I decided on this one because it is made of titanium, and super lightweight. This makes it easier for Taysen to maneuver and he is doing a great job of propelling himself on hard floors. The front wheels also light up.

Taysen L-O-V-E-S school!!

River and I have been enjoying our one on one time together while Taye is at school. Four years old is one of my favorite stages.... He is quick with the hugs and always giggling. I love to ask him what his full name is because every time he will answer in all seriousness: "You know, I'm River Sweetheart Baylen Langstraat!"

He likes to go to the park, go "hiking", and he especially likes to go to the bakery and pick out a donut. He dislikes short sleeved jammies, sandwiches, cleaning up toys and dressing himself.

what we've been up to.....

2010-08-01T20:03:00.000-07:00

Harvesting our veggies

Celebrating birthdays! River "sweetheart" turned 4!
....and this guy right here turned 6!

Fishing with friends...

Hanging out at Birch Bay
grandpa was there too

Counting our blessings

time continues to march on and i can't hardly believe that Taysen will be starting Kindergarten in just over a month. We still have lots of meetings and planning to ensure that this is a safe transition for him.

he has not been sick all summer.. wooohoo!

he saw a new endocrinologist and she doubled the amount of steroids he is on; therefore we have to be even more careful with what he eats as he cannot afford to gain weight. Also, at that visit, he got his first successful lab draw from somebody other than Hector. Also, he did not call her any names during the horrific event. (score!)

he is becoming a perfectionist at coloring. At one point his coloring was scribbles all over the paper, his fine motor control was that poor. I didn't think he would ever be able to write his name but you see I was foolish to underestimate my boy. He defines pride by exceeding my expectation time and time again. He not only colors inside the lines, but writes his name as clear as a bell.

he swims like a fish.... and by that i mean he can swim with absolutely zero flotation device! Taysen calls it "miraculous" and i have to agree!!!! I am going to video him this week and won't be so long with the update this time.

overdue

2010-06-06T21:09:00.000-07:00

I have not been in the mood to sit down and update this blog.. it seems like so much has happened these past couple of months and I am feeling very behind on lots of things.....

A couple updates:

Taysen and I flew to Madison, Wisconsin to see the amazing Dr. Mary Schroth. She spent several hours with us during our appointment, and was extremely thorough... we tried to do PFT's w/ Taye again but he's not quite able to follow all the directions to estimate his lung function. We also got to meet w/ her RT and dietitian and got some more good info from them. -Dr. S thought Taysen looked really good!--she is known as "Dr. mom" in the SMA community and I can certainly see why. She tweaked his bi-pap settings and is going to review his latest sleep study report and then will decide if he needs to be wearing his bi-pap more. He falls asleep with it on no problem, but it usually comes off between 12 and 4am.

Taysen is officially registered for Kindergarten. whaaattt??? really, I can't believe I'm doing this. Taye, however, is so very excited to go to school. He has been planning out what he is going to pack in his lunchbox, promising me how well he will listen to the teacher, and " I will even raise my hand before I talk!" (this will no doubt be his biggest challenge)... my boy looovvesss to talk!

I was about 50/50 to send him or home school him but decided to give it a try for several reasons.--I just hope and pray that he will stay healthy. The option is still there in case of illnesses in the school to home school part time.. bottom line is this is my baby.. although his fast driving, LOUD talking, joke telling makes him appear to be a regular kid just that he can't walk, he is still a very medically complex and fragile child! Yes, I want him to experience it all, however safety has to come first. We were able to talk at length about Taysen's plan and I feel good about it. More meetings and training to come this summer.

Because no post is complete w/out pictures.. these are some I took of Taysen a couple months ago. More updates to come at another time, but right now I've got 2 munchkins demanding hot cocoa and a movie!

Rehab Clinic

2010-04-23T23:23:00.001-07:00

Wednesday Taye and I headed to Seattle for his rehab clinic checkup. There is a new director of the clinic, Dr. Apkon. I must say I was pleasantly suprised! I really, really liked her and she is super knowledgeable about SMA.... she has even worked with Dr. Swoboda and is on the FSMA advisary board! She seems to be pretty aggressive with treating SMA and suggested that we keep our eyes open to get Taysen into another clinical trial.. Since he is doing well on VPA we would want to make sure he would be allowed to stay on it for a trial, as many of them have exclusions . I will surely take her advice and keep my eyes open. reading books while waiting.

Taysen is at the age where they start measuring lung function with PFT's (pulmonary function test) He has done it the last 2 times now, and is not very consistent so we didn't get too much info... other than he is for sure above 75%. I think that's bad.. his pulmo thinks that's "pretty good" he always says that though, so that doesn't mean too much to me. Really looking forward to our appointment with Dr. Schroth (pulmonologist) in Madison to get some really detailed info about his current lung function and what we can do about it.
Taysen had to do a lot of waiting. He got bored. He decided to color on himself. He then told everyone who came into the room that he was a tiger and to look at his tiger stripes (growl)

admiring his artwork

What a long day.. we usually have treats after appointments. Kind of a tradition I guess.

and this is my favorite picture - talking to River about his day after a long day apart :)

Also, I heard back from U of Utah already and it turns out that sweet little River is not even a carrier for SMA! I was thrilled to hear this, although I certainly hope (expect?)that by the time he has children of his own, carrier status won't matter b/c SMA will have a cure by then. wishing. hoping. praying. believing. Thanks for checking on my shining light.

Gardening

2010-04-22T22:41:00.000-07:00

Our first... and hopefully not our last... attempt at gardening. We planted a week ago and everything is still alive. The boys had a great time helping, "shobeling" and looking at worms. Thanks Gigi and Grandpa for your help!

River and his "shobel" Rivies loves to help around the yard. He's a real workhorse too! He will shovel, rake, sweep.... "can I hewp you mommy?"

Salt Lake City #4

2010-04-10T22:11:00.000-07:00

Taysen made his 4th trip to Salt Lake City, Utah to see his SMA specialist Dr. Swoboda. May 07 we made our first trip there to get Taye started on Valproic Acid/Carnitine and we go back every year for a check up. We arrive on Wednesday, and stay in the hospital. Thursday Taysen has an EMG and DEXA scan. Friday he has Physical Therapy where he is scored on things he can do, and also on manual muscle testing and range of motion. I love Utah, it's so beautiful there. The hospital staff is amazing and my boys actually look forward to going every year!
Thursday morning was Taysen's EMG. Of course his sidekick is right next to him through it all. here they are watching a DVD while waiting for the versed to take effect.
Taysen's MUNE (combined muscle and nerve response) was 5.3 this year. Pre VPA Taysen's MUNE was 2. One year later it was 3.4, and last year he had a huge gain and it was 5.6. My first reaction was panic.. it's a huge fear of mine that the drugs will stop working before something better comes along and we will be stuck sitting here watching this disease progress and unable to do a thing about it.
After talking with Dr. S I do feel a little better.. she said he had some collateral innervations which is good, and she thinks his number went down a bit due to the massive growth spurt Taysen has had and the amount of stress that puts on his weak little body. I know she is not the type of Dr. to blow smoke so I really hope this is the case. She said there is only so much that HDAC inhibitors can do (VPA is one of those), so even maintenance at this point would be good. I am so ready for a stem cell cure.. Trials are set to start on type 1's soon, so i just hope we can hang on so that Taysen will be able to receive some type of benefit from them. Like it or not people, stem cells cure diseases and my hero deserves a cure. like 4 years ago.

You can see the electrodes on his hand and also the tool she is holding delivers the shock to the muscles which shows the response on her screen.
She felt Taye's back looked good, no scoliosis, and his joints were all exhibiting normal range of motion. She noted that he is not really expanding his rib cage when breathing so we reiterated the importance of breathing support especially while sick, and also consistent use of the cough assist.

Tayesn's DEXA scan showed a significant improvement in lean muscle mass. This is great news, since that number has steadily declined the past few years. I have to say that this is from his swimming, since that is the only thing we changed. Taye continues to swim about 5 nights a week here at home and loves it!. He also had an improvement in bone density (from all the standing) which is great since these kids tend to have very brittle bones that break easily.

Here he is getting his DEXA scan. He has to lay completely still. At this point the versed has worn off, he is so brave!
We also tested River for SMA. Usually in families, kids will have the same type, but she said that she does have some families w/ type 2 and 3 -in which case River may not be presenting with symptoms yet so we felt it was best to get him tested to cover our bases and also to find out if he's a carrier for when he has kids some day.
I am so thankful that Taysen is one of her kids because there is such a HUGE difference in knowledge between a specialist who sees and aggressively treats SMA kids every single day and our doctors at Seattle Children's.
We will go back and see her in 6months-a year... It depends on how he does. Next on the agenda for Taysen is a pulmonologist/MDA check-up at Children's and also another blood draw. She couldn't get enough blood from him and after 4 pokes we gave up. I can't stand listening to him scream and beg them to stop hurting him.. YES it has to be done but also IT SUCKS AND IT'S NOT FAIR that my boy has to go through all of this crap. And YES, I'm allowed to feel that way from time to time. I am THANKFUL for my son and PROUD of him for all that he is.

here he is racing down the halls..... that boy loves to "run"

Best in Show

2010-03-08T21:05:00.000-08:00

Taysen and Jackson had their first dog show on Saturday...these 2 buddies entered the "best trick" competition and won FIRST PRIZE!!! We are so proud of Taysen! He marched right up there in front of everyone and had Jackson tug off his socks :) He won a blue ribbon, and a goody bag of treats and toys for Jackson.

here is Jackson taking off his socks.. notice the sidekick made his way up to the front of the crowd and is also claiming the blue ribbon has "his". Sweet little River... love that little monkey!

Valentine's Party

2010-03-06T21:17:00.001-08:00

Cupcakes (or 'pupcakes' as River calls them), Pizza, candy, pop and movies were on the agenda for Taye and River's annual Valentine's Day party 2010. They love to have little "parties" (I suspect it's because they can talk me into getting them junk food and pop for their "party") Those little boys have the best time together eating, telling jokes, and laughing with eachother.

Brothers

2010-02-27T21:33:00.000-08:00

"There is no other love like a love for a brother.....There is no other love like the love from a brother" -Astrid Alamo

Taye's PT has an assistant....

2010-02-15T15:27:00.000-08:00

.... he's brown, furry, and likes to lick faces. He loves to help during Taysen's stretching time by demonstrating how it's done.

It's a really rough job being a service dog... wouldn't you agree?

on your mark, get set, GO!

2010-02-08T21:26:00.000-08:00

Taysen would like to extend an invitation out to anyone who wants to race him.... So long as he has sufficient notice to "charge the batteries really really good!"

Chase Giving update..

2010-02-01T21:47:00.000-08:00

(best buddies)

...Update on the Facebook Chase Community Giving Program... the GWENDOLYN STRONG FOUNDATION pulled through and placed 6th out of 500 earning us a sweet 100 g's for SMA research bringing the total from 2 rounds to $125,000!! Perhaps even more important than the money was the fact that we raised a heck of a lot of awareness for SMA. Pretty amazing considering the competition and the resources that were available to them. I thank each and every one of you for voting to help END this horrible disease. I am so amazed and inspired by the Strongs, and each and every other SMA family that is busting their butts doing every last thing they can to see their kids LIVE..

There were a handful of my facebook friends who posted their pleas for more votes several times and for this I am forever thankful.. YOU ALL made a difference! ... I don't enjoy attempting to give people a glimpse of my son's daily struggles because I do not like people to feel sorry for me.. or worse, feel sorry for him. I loathe pity. Compassion, however, I like. For this reason, I try to keep this blog a happy place and not go into too much detail about all the crap that comes w/ this disease. Because of this I fear people don't understand how serious and devastating this disease that we battle every day is... SMA. I need to do a better job of 'keepin it real" on this blog.. (does anybody read this?) Research money is soooooo important because without a cure, SMA types 1 and 2 is eventually fatal... SO MUCH is already known about SMA that a cure is within grasp, we just NEED MONEY. Be on the look out for a fundraiser this summer or fall.. not sure what or when but my wheels are spinning. Taysen loves to play with his little animals that he collects... every single day he plays animals. In this picture he was playing "dog show" and had them all lined up. He knows most of the breeds, and also has nicknames for them. i.e. the German Shepherd's name is "Germie" --creative, right??

It only cost me 2 cookies each to get them to cooperate for a picture together..

Have You Voted Yet?

2010-01-16T14:10:00.000-08:00

ARE YOU A FACEBOOK USER??

This is a personal plea! A cause that is very important to me has a real opportunity to win $1M to help CURE Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. I'm asking you to do two FREE things that will take you less than a minute and will help turn this $1M MIRACLE into a reality:

(1) VOTE ---> Go to http://voteforsma.com/ and take 20 seconds to vote for the Gwendolyn Strong Foundation in the Chase Community Giving campaign on Facebook.

(2) In the box titled "Help This Charity By Spreading The Word" on the left hand side of the Gwendolyn Strong Foundation Chase campaign page, CLICK the "Add To Profile" button.
A new box will pop open. Could you please add a personal comment about Taysen asking your friends to vote? Only 2 of my FB friends have already done this, and THEY have gotten votes from THEIR FB friends. (see how this works??)

(3) CLICK "Publish".

People like to tell us "we will do anything to help you" Very rarely do we ask for help, but WE NEED YOUR HELP NOW!!!!!! Remember a couple months ago I posted on FB asking for votes for round 1? Well, thanks to many of you who voted in that round, we won $25,000 already in the hands of SMA researchers. This is for round 2 --- ONE MILLION DOLLARS!

Thank you so very much for your support. Together we will find a cure. I do believe this will happen but we don't have the luxury of time.

Taysen Update

2010-01-10T14:27:00.000-08:00

Taysen will be going to see SMA pediatric pulmonologist Dr. Mary Schroth in Madison, Wisconsin on May 11. I have been wanting to take Taye to see her for a couple years now, but have always put it off because flying with all the equipment is a real pain in the ass-not to mention the health risk. Now is the time. I have remind myself of our goal to do everything we possibly can to keep him as strong and healthy as possible, to be as proactive as possible. There is nothing worse than feeling like there is nothing we can do but sit here and wait and watch this disease steal from him. That is what I felt like when he was first diagnosed. I am thankful to have an outstanding Dr. who has helped change that and we are really looking forward to having Dr. Schroth as a part of Taysen's team of Doctors. We will continue to see Dr. Swoboda in Salt Lake City and will make our 4th trip to see her in the next couple of months. (we'll drive that one) We will get to see our little friend Brynlee -a sweet 2-1/2 yr. old w/ SMA type 1, who recently was changed to a type 2 b/c she started sitting for the first time ever!!!!

Other than that, we have just been enjoying hanging out at home a lot. The boys had a great Christmas, and they are loving all their new toys, games, and books. Taysen has been in remarkable health this flu season. We have gone through more bottles of hand sanitizer and clorox wipes than ever before. We did let him go to Alvin and the Chipmunks movie for his cousin's birthday party. You can bet your paycheck i took a bottle of lysol with me and sprayed down the chairs first.

If you think I am an OCD germ freak.... You are right.

'Twas the night before Christmas...

2009-12-24T22:47:00.000-08:00

My lil' ones are fast asleep. Earlier they were wondering "do you think Santa will come in our room to say hi?.... cuz we wouldn't like that.... it might scare us a little bit." I told them that is part of the magic.. he is not allowed to be seen or heard by the children when they sleep, but if we wake up and see the cookies are gone, then we know that he was here.

Merry Christmas to you and yours... xoxo

The Rug has skillzzz..

2009-12-19T22:03:00.000-08:00

"The Rug"... Jackson's affectionate nickname from his training days at Summit. He can usually be found well... laying on the floor, you know, like a rug! He does love to nap, however he also LOVES to help Taysen and we LOVE how independent he makes Taye feel.

At Taysen and Jackson's graduation, Wendy (the trainer) gave Taysen some tug ropes that she made for Jackson to open the fridge. The floor is a little slippery on his claws, but he gets the job done ~ check it out!

I can tell they've been practicing because look what I found in the fridge.

Graduating.....

2009-12-04T12:28:00.000-08:00

....Taysen and Jackson that is! It's a big deal for our little man. He's very excited to see everyone (and their dogs) on Sunday. If any of you are going to be in the Seattle area on Sunday and would like to come, please let me know and I will give you directions! I took Jackson with me to the mall for an eye dr. appt. this week to "brush up" on his manners and aside from a little extra sniffing when we passed the pretzel shop he was perfect.

"get it. bring it here. give." - picking up a toy that Taye dropped. He has no way of getting dropped items if someone is not around to get it for him. This is one of Jackson's favorite things to do.

"push" - opening the door for Taysen. Taysen has really been wanting Jackson to tie to the wheels when we are out and about so we'll talk with the trainer about that to see if Taye can start practicing. It's going to be a real challenge for him to not drive like a wild man but he says he can do it!

"push" - closing the drawer "tug" - pulling off socks.

Cruising the open road

2009-11-18T20:54:00.000-08:00

I never get tired of watching Taysen tear around on his wheels... It brings him so much joy. He LOVES driving around at top speeds "running". He laughs and giggles and sometimes gives River a ride. I am thankful that he is able to be independent in his "scooter".

There is a newish development near our house that we sometimes go to so the boys can run and play and burn some energy this time of year when our yard is a soggy mess from all the rain.

Taye and River both escaped the swine flu ~thank God. I think it was a combo of getting TJ out of the house in time, Tamiflu, and hard core cleaning.....if you thought I didn't go through several cans of lysol antibacterial spray and a bottle of clorox clean-up in one week.. you'd be wrong.

Taysen is still going to PT every week, and he is also getting in home PT, OT and speech weekly through the school district. We found a lightweight manual wheelchair that he is able to maneuver that we will be ordering soon. It is called a TiLite and will be used as a backup chair and also for inside homes so that we don't have to carry him around, hopefully giving him some independence. He is not able to move very fast or at all on carpet, however considering the first time we trialed a manual chair he could barely move it at all, I'd say he's doing awesome! When the DME rep dropped the trial off, he apologized for the color...PINK.... little does he know, that happens to be one of Taysen's favorite colors :)

H1N1 update~

2009-11-09T13:17:00.000-08:00

It's been a week since TJ got sick, is it safe to say that Taye and River are NOT going to get the swine flu?? I *think* we are safe?!!? TJ came back home on Saturday after being fever free for 24ish hrs. I have been having headaches for 1 week and a half ... not sure if i had a mild case b/c of the Tamiflu or what. Thanks for the thoughts and prayers!

lysol, clorox and repeat

2009-11-03T20:49:00.000-08:00

H1N1 has arrived at our house.

Yesterday when TJ got home from work he looked a little off. I asked him if he was sick and he said "maybe". I sent him to the Dr. and he was told he most likely has the swine flu.

Crap.. I was really really hoping we could avoid this nasty flu... I don't know anyone who sanitizes more than we do!!!! We have been SOO careful since the boys just got their H1N1 vaccine on Wednesday & it takes about 2 weeks to build immunity. Taysen's doctors have made it clear that if he is exposed to H1N1 he needs to start prophylaxis Tamiflu ASAP. I called the on call pulmo and she called in Tamiflu right away for Taysen. I talked the on call ped. into rx it for River too so both the boys started it last night. TJ has fevers of 104 and throwing up.. he has been quarantined to his parents basement since last night. I have been lysoling, cloroxing, and bleaching every surface possible.

The pulmo said if they would get it, the boys would probably show symptoms w/in 2 days but could be up to 5 days. HUH?? are you kidding me that i have to sit here and wait and worry? I am trying to remember Matthew 6:27 "And who of you by being worried can add a single hour to his life?" but I don't feel that verse applies to me. Also, Taysen's cough assist is broken. I called the DME on Monday and they said one could be overnighted, would he be okay w/out it for a day? I reluctantly agreed, but guess what it didn't come today. Now i'm worried he's going to start coughing tonight and then we'll really be screwed.

We ran to starbucks tonight for a latte so i'll be able to stay up and clean some more... Taysen's sats look normal right now so i will sit here and hope for the best that he will stay healthy. It is out of my control now.

Since we didn't go trick or treating, these are photos of the boys' fun little Halloween party on Saturday. River's favorite food is cupcakes... he calls them "pupcakes". He also thinks his middle name is sweetheart. He is so funny, i love this age.

2009-10-01T21:48:00.000-07:00

Taysen, River, Jackson, Auntie Mia and I went to Seattle for Taysen's pulmonary appointment with Dr. Carter. We went over our cold and flu routine/protocol and Taysen tried to do a PFT. Playing with the noseclip proved to be more fun and try as he might he couldn't quite follow all the directions so I'm not sure how accurate those results will be! He took it home as a souvenir.

He is hysterical when he is in a situation where he is 1/2 nervous. He just talks absolutely nonstop.. he tells jokes, he makes up rapsongs, he makes himself laugh and if he makes someone else laugh, that's the icing on the cake for my little man.

I was planning on the kids getting their flu shots today, but they didn't have them yet! Looks like I will have to drag them to the pediatrician for those, i was really hoping to get them over with. We will all be getting the H1N1 vaccination this year as well. If Taysen has been exposed to anyone w/ confirmed flu, or shows any cough/fever symptoms he will start Tamiflu immediately according to Dr. C. He does not want to take any chances. He was pleased with how well Taye is doing, and how much stronger he appears. He gave me a great reminder today not to let my guard down, saying that it will take only one bad cold and he will get into trouble in a hurry.
It is such a struggle for me to try and balance doing "normal" things and keeping our boy healthy. He is a social guy, and loves visitors. "it's a party!" he says. Usually, he is allowed out if he's in a pushchair/jogger and does not touch things. We all handwash 1oo times a day, and lysol the house daily. He is not allowed to be around people who are or have been ill, share toys with kids, share food/drink, kiss on the mouth or just be in "germy" situations. Due to the 2 flus that are out, we are going to be changing some things about how to keep him and River healthy. Unfortunately that makes for a looong winter but we will happily do anything to keep his lungs strong and healthy.

Also this week... we made a quick trip for Xrays on Taye's foot. He started screaming when the PT was stretching his foot. He cried in pain the whole way home, and by nighttime we couldn't even transfer him without tears. :( poor guy. Since he is at such a high risk for fractures, i decided to take him in to cover my bases. Thankfully, nothing showed up on the xray. He is still in some pain, and not able to tolerate standing in the stander at all, so hopefully in the next couple days he will be feeling better.

Friends

2009-09-19T22:36:00.001-07:00

x-rays and labs for Taysen

2009-09-10T19:50:00.000-07:00

We headed to Seattle Children's Hospital on Wednesday for Taye's appointment with the orthopedic Doctor. He also had to get some labs drawn. again. Here he is, on the lookout for Hector. Apparently, Hector was in a meeting for the afternoon. Two phlebotomists later, the blood was flowing. Taysen screamed the entire time as usual. :(

His spine was at about an 18 degree curve sitting up. It did go away when he was laying down, which tells us he has a flexible curve. Since Taysen has never had spinal x-rays sitting up (we usually have them laying down, and it has always showed zero curve) It's possible that it has been like that for a while. His kyphosis is still flexible, and Dr. Song is not worried or ready to even talk about surgery. Thus is the nature of SMA I suppose, but still hard to hear.

His hips looked similar to last x-rays. They look like they are starting to come out a little bit when compared to his first hip x-ray at age one.

I'm going to try having him wear his new TLSO a little bit more. Not too much though, b/c we don't want those muscles to atrophy from lack of use. Dr. Swoboda has said that standing will help keep the hips in, so I'm going to try and come up with a new schedule so that he will get more standing in. We are at about 2 hours a day.

We ended that day with some dinner with Taysen's girlfriend, Sheri. He loves her!

visit to Cascade Prosthetics and Orthotics.

2009-09-10T19:08:00.000-07:00

Taysen got cast for his new TLSO last week. ThoracicLumbarSacralOrthosis. He had his last one for almost 1-1/2 years so it was definately time! I decided that this time I would let him choose the colors. I tried. I really tried. But in the end, I had to exercise my veto on his top pick so he ended up with the second most obnoxious color for the plastic and i got to choose the foam color. I can't wait to share pictures with you when it is all finished!

Here are some pictures of Cindy, the orthotist, doing what she does best. First, she puts 2 tight little stockinettes on him. Then Taysen makes jokes about how his belly looks in the tight little shirt-dress.

Then we wrap him in plaster and let it harden a bit. I don't have pics of that b/c i had to help. Taysen tries as hard as he can not to touch because it is very sticky and Cindy told him not to touch.... but he can't resist. Every time!

Then she cuts it with a knife right down the center, and that becomes the mold for his TLSO.

Jackson got to come. He showed off his skills by opening the door for us.

More swimming

2009-08-18T18:51:00.000-07:00

Here is Taye showing off his latest trick. Pretty cool, huh?

...a few random pictures. yes, i am pretty sure River thinks he is actually a cowboy.

oh man, this last picture makes me laugh every time I look at it! check out Taye's hands.

all he needs is a lil' motivation

2009-08-13T20:27:00.000-07:00

Here's Taysen doing some "tummy time". .....

Taysen does not appreciate this time of strengthening his back & neck muscles as much as I do. This is very difficult for him and he often gives up and throws himself to the floor out of sheer exhaustion....

He was having a particularly difficult time today, so I threatened him with...

a nap.

I announced that this is the exact reason he still needs naps, because he becomes a floppy mess, unable to hold up his own head.

(Taysen hates naps... on the occasion that I talk him into napping, he declares the instant he wakes.. "I'm never going to sleep again!!!" "never ever!!!" "you'll never make me take a nap again!". he's a feisty one, that's for sure.)

I think he realized he needed to show off a new trick at this point because as soon as he heard the word "nap", he says.. " hey mom, watch me! look what I can do!!! "
If you can't tell from the pictures, Taysen is on his belly and he is NOT propping his head on his hands. This has NEVER happened before!!! Yes, I realize this is a motor skill most 3 month olds can achieve, but for my son, this is a big deal! I then jumped up and down clapping my hands and cheering.

I know that SMA is a progressive neuromuscular disease with no treatment or cure.. BUT i am thrilled with his maintenance, and in this case... maybe even improvement?? Perhaps he is able to better use the muscles he has? ...gaining some strength? Perhaps the liquid albuteral added to the drug regimen is giving him a bump of strength? Or.. as I like to think,

perhaps the fact that he is swimming his little arse off in the pool every night for 4 months is actually doing something?

He is not able to get into this position by himself. I did not time it, we are talking less than a minute here but so what, he's still a rock star. I am happy. These little things excite me.

Go Taysen!

he makes his daddy proud!!

2009-08-11T12:58:00.000-07:00

Coolin' Off

2009-07-31T21:32:00.000-07:00

BOO for powerchairs that aren't waterproof!! It has been 100* and typically Taysen doesn't do too well in the heat. Since he can't drive through the sprinkler, he agreed to option 2, which was sitting in the sprinkler.

I am having lots of fun playing around with my new camera. Amber, I bet you didn't think I would print out your "photography phriday" lessons so I can reference them every time I get the camera out?!? Amber is a professional photographer & has an adorable lil' guy that was originally thought to have SMA1, and was later dx with a Mitochondrial disease (which also falls under the umbrella of "MDA")

A Health Update:

Taysen is currently doing well, only requiring a few extra coughing sessions today.

I have been sick as a dog these past few days and am praying that i had the same thing as Taysen, just that the symptoms were worse for me. I can't imagine i could have picked something different up, but you never know.

Back home

2009-07-27T22:04:00.000-07:00

UPDATED: well, the cold turned into coughing. crap. what a way to spend this 90 degree weather we're supposed to have this week. Attatched to the coughassist. Not a junky cough so far, so that's good i guess.
Did several rounds of coughing last night and this morning. Have I mentioned before how much i HEART the cough assist?

Whoever invented it is a genius for sure.

... after a wonderful week in Sun Lakes with family, we are getting back to our normal routine. We had some HOT weather this year, even hitting 100's! Thankfully the kids were both water boys this year and swam in the lake in the morning, and in the pool in the evening. River got carsick again on the way home, and it appears that Taye Taye picked up a cold but so far seems to be a nasal congestion type of cold.

On our way, we made a teeny little pitstop at Seattle Children's for Taye's every 3 month blood draw..... yikes. I was expecting it to be bad and he did not disappoint, it just gets worse with the screaming every time we go. Don't have much else to say about that. I think a small gift may be appropriate for poor Hector next time we go.

Today we all headed to Seattle for a summer party fundraiser for Summit Assistance Dogs We had a great time and got to meet lots of people. We are grateful to be a part of this organization and have been blessed by recieving Jackson because of so many generous donors. The total cost of raising and training an assistance dog is around $20,000. They do not charge for dogs so obviously we like to help out in any way we can. Taysen is one of the youngest recipients of an assistance dog.

I will leave you with a few more pictures from Sun Lakes... have a wonderful week THANK YOU for keeping our Taye in your prayers.

birthday party & some pictures

2009-07-25T15:34:00.000-07:00

Taysen wanted to have his 5th birthday at the waterslides this year! We had a great party with his grandparents, cousins and aunts/uncles.. unfortunatley most of my pictures did not turn out so here are just a couple...

snacking on some pizza.... going down 20 1 waterslide makes a guy hungry!

Taysen blowing out his 5 candles!!!!

Rivs showing off his hands post fudgsicle. Those fuzzy birthday party pictures earned me a new camera I've had my eye on for years! notice the difference between these last 3?

Playing outside.. the wheelchair accessible sandbox is in the background.

My Running partner
As soon as Jackson sees me put my zune on, he is waiting at the door. 3 miles is his maximum! then he's worthless the rest of the day. haha

Happy 5th Birthday Taysen~

2009-07-15T21:03:00.000-07:00

Today my firstborn son turns 5. (gasp...) Is it really true? Could 5 years possibly have gone by since that precious, loud little bundle made his first appearance?

I supposed it is true that I always get a bit emotional on my kids' birthdays.. I hate that they are growing up so quickly. I don't have babies anymore, but little boys! This is especially true in Taysen's case. Another year older, another healthy year, and for that we are BLESSED. I wish I could freeze time and not worry about checking another birthday off the list of how many?

Never in my wildest dreams could I have predicted that my angel would recieve the diagnosis Spinal Muscular Atrophy almost 3 years ago. Never in my wildest dreams could I have predicted how AWESOME he is doing today. So while those thoughts still creep in from time to time, they are outweighed with gratitude and happiness that my boy is beating down the walls and thriving. Today is a happy day.

I believe he is doing so wondeful for a few reasons...
1. We have a top notch Dr..... the best in the world. He has been on VPA and Carnitine for 2 years now. He started Albuteral Syrup a few months ago and as of this moment, he is still considered a responder to the drugs. Do I feel 100% comfortable that my child is on an anti-seizure medication? no. But at least I feel like we are doing something... anything, until the holy grail comes.

2. Taysen has hardly been sick since we started paying close attention to germs! While others might not understand our insistance on keeping germs away, and yes, this includes runny noses. For Taysen, it means health. Sickness has not had a chance to take his strength away from him he deserves that "leg up"

3. Taysen goes in the stander everyday. There are little exceptions to this rule. He also does stretching and PT. Perhaps the most important and most recent addition is swimming. Taysen swims at least 5 days a week and loves it!

4. There are people all over the place who are PRAYING for our son! We are thankful for this!

Happy Birthday Taysen!! Not a day goes by that you don't make us laugh hysterically, count our blessings, ask us questions that make us go "Hmmmm", tell us each how much you love us, make us be the announcer for bull riding, ask 46 times "ya wanna hold me?" and give us the best hugs whilst saying "check out my muscles!" and be on our knees thankful for YOU! We LOVE YOU TAYSEN! We are thankful for 5 years with you and looking forward to many, many more!

Dr. Appointment

2009-06-24T14:49:00.000-07:00

Today Taye saw his endocrinologist who keeps tabs on his CAH. Just a quick visit checking his weight and height, and ordered his labs.. (UGHH) We'll save that for our fave phlebotomist at Seattle Children's, Hector. One of these times he's going to see us in the waiting room and run the other direction LOL! Taysen screams louder than any human being and that's no joke
...waiting patiently at the fish tank

He weighed in at approximatly 40 pounds (50%) and i forget his height, but it was 70%.. Dr. S would prefer his weight to be down a bit, but he is on the right track, growing but not gaining too much.
On the way home, he talked me into an italian soda. I swear these kids can sniff out my exhaustion and need for coffee a mile away. Would you believe he has actually said to me "mom, you look tired, let's swing through Starbucks!"

Lions and Tigers and Bears-oh my!

2009-06-23T20:45:00.000-07:00

We headed to Woodland Zoo with TJ's family for the weekend.. The kids all had a great time looking at all the animals, eating pizza, and choosing some toys at Toys'R Us. Taysen also got a chance to show off his mad swimming skills at the hotel.

The boys with all their cousins....

River rocking out....

Picture time!

2009-06-22T14:38:00.000-07:00

I wanted to share some pictures from Taye's 5 year and River's 3 year session a few weeks ago. Can't hardly believe my munchkins are growing up so fast.. so sad. I was watching River run around in his tight lil' jammies last night imagining him as a teenager. Scared me bad! LOL! Pictures by Brea Bateman Photography, Thanks Brea!

Jackson in Action

2009-06-09T20:32:00.000-07:00

...check it out!

Heat Wave

2009-06-06T11:06:00.000-07:00

We got some beautiful warm weather this week in Washington!! The kids stayed cool swimming in the little pool. Taysen ate a record amount of popscicles and discovered his new love, the fudgesicle, which he calls "tricycle" Taysen loves "the beautiful sunshine" but he is a lot weaker with the heat.. even taking naps every day this week.

Taysen loves to give the command "watch" to Jackson. sometimes he forgets the command and says "look into my eyes" LOL!

We were doing sidewalk chalk and when I drew a picture of River aka "monkey" he said "make sure you draw my fuzzy hair and my chubby little legs!"

River is potty training this weekend... don't ask me why he insisted on wearing his cowboy hat and boots. Needless to day all nutrition has been thrown out the window. Both River and Taysen are enjoying their smorgasborg of candy, chocolate, gummies, donuts, pepsi etc. etc. you get the picture!

Jackson spent much of the week napping in the shade. He came to Taysen's physical therapy this week and was an absolute gem! He laid right by Taysen during his stretches so Taye could pet him and distract him from the stretching.

Taysen can swim all by himself!

2009-06-06T09:59:00.000-07:00

Here's our man, Taysen swimming in his therapy pool.... he also does a little singing "1 2 3 like a bird I sing" his long time favorite Tim McGraw song.

What is SMA?

2009-06-06T09:00:00.000-07:00

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head & neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, & about 1 in 30 people are genetic carriers. Each child born to carriers has a 25% chance of having SMA, 50% carriers, 25% uneffected. SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, & back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding & swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing & coughing) can lead to an increased tendency for pneumonia & other lung problems. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright & sociable.

What are the symptoms of spinal muscular atrophy?
Spinal muscular atrophy is sometimes difficult to diagnose, as symptoms can resemble other conditions or medical problems. Each child may experience symptoms differently. There are several types of spinal muscular atrophy based on symptoms and age of onset.

Type I (Werdnig-Hoffman)
This is the most severe type of SMA, and unfortunately, the most common. Symptoms may be present at birth or develop within the first few weeks or months after birth. Infants have difficulty holding up their head, sucking, feeding, swallowing, and often move very little. The legs are more severely affected than the arms. The muscles of the chest which help to expand the lungs are affected, and the chest may appear small or "bell-shaped". They have a weak cough, and are prone to respiratory infections. The tongue may demonstrate "worm-like" movements, and they may demonstrate a tendency to choke while feeding. Complications from breathing problems often lead to death or dependence on some form of respiratory support by 2 to 3 years of age.

Type II (intermediate form)
This form of SMA most commonly becomes evident in children between 6 months to 2 years of age. They may show delays in acquiring motor skills such as rolling, sitting or crawling. They are unable to walk independently without support. They typically have generalized muscle weakness and may require braces, walkers, or a wheelchair for assistance. Life-expectancy varies greatly in this group of children, since they demonstrate a very wide range in degree of weakness. However, complications commonly include weakness of chest muscles involved in breathing, resulting in a weak cough and tendency for pneumonia. Scoliosis develops in virtually all children at some point, and they are prone to bone fractures. Children who are unable to bear weight often develop hip dislocation. Contractures of the muscles and joints can limit function over time. Children in this group may also demonstrate difficulties in swallowing and chewing, and require close monitoring of nutrition. Lifespan in this group depends on the severity of respiratory muscle weakness, but many children survive well into adulthood.

Type III (Kugelberg-Welander)
This form of SMA most commonly becomes evident in children between 2 and 17 years of age. These children may show delays in motor development, difficulty walking, trouble getting up from the floor, mild muscle weakness, and frequent falls. Fatigue can be a significant problem, which limits the ability to walk long distances. A tremor involving the hands is common. Scoliosis is frequent in later childhood. Respiratory muscle involvement is much less often a problem, and difficulty swallowing is rare.

Type IV
This form of SMA includes those individuals who don't develop symptoms of weakness until they reach adulthood. Usually, this results in muscle weakness predominantly affecting the legs, and manifests as a walking disability. The symptoms of spinal muscular atrophy may resemble other problems or medical conditions, and can be confused with other muscle or nerve conditions, including muscular dystrophy, myopathy, other spinal muscular atrophy variants or even forms of amyotrophic lateral sclerosis (ALS). Another closely related condition, known as spinobulbar muscular atrophy (Kennedy's disease), can also present in late childhood or adulthood.

In The Beginning...(Taysen's story)

2009-06-05T22:11:00.000-07:00

My beautiful firstborn son was born on July 15, 2004. Taysen was absolutley perfect and I fell in love with him the moment I laid eyes on him, I remember I would just hold him and stare at him for hours! He didn't get much use out of his crib those first few months because I never put him down.

Everything was going well at home when I got a phone call from his Doctor when Taye was one week old. One of the PKU tests they did at the hospital came back abnormal and we needed to go to the hospital to have it redone. After talking on the phone with a Dr. at Seattle Children's Hospital, we decided it would be best to bring him there. The endocrinologist we saw that night was fairly certain that Taysen had an adrenal insufficiency called Congenital Adrenal Hyperplasia or CAH. The blood test later confirmed that he did in fact have CAH and the most severe form, salt wasting CAH where his adrenal glands do not produce the fight or flight hormone aka cortisol. He spent one night in the ICU and one night on the floor when he was only one week old. I never thought I would ever see my child with IV's and monitors everywhere, even though I knew his CAH could be managed with medication, it was a very scary time for me learning all about the medications and what could go wrong. Taysen is followed by a pediatric endocrinologist very closely and is doing well. He takes medication 3 times a day EVERY day for the the rest of his life.

When Taye-Taye was about 6 months old, he started sitting up. He would tip over very easily and sit in a slouched position. If he fell over, he could not get back into sitting. He was able to roll around, but had difficulties with tummy time and was not able to put much weight on his legs when we held him in a standing position. By the time he was one, he was not making any progress despite 2 months of Physical Therapy. He was not crawling or standing at all, but could roll all over the house! We saw a neurologist when he was about 15 months old and she did not seem concerned at all. She did a CPK and hip xrays which were normal and told us to come back in a year. Months went on and still there was no change. We saw a geneticist at 18 months who ran some other tests all were normal. When Taysen was 18 months old he was speaking in full sentences, yet his motor skills had not improved at all. I began doing my own research and as soon as I saw the website for Spinal Muscular Atrophy, I was overcome with a feeling of dread and I knew that was what he had. Almost everything matched with type 2 SMA. I called the neuro and and also the geneticist and both felt that since he had been so healthy, and since he ALREADY had a rare genetic disease it would be extremley unlikley that he had SMA.

Meanwhile I read everything I could get my hands on so I could prepare myself. When Taysen was 2 we saw the neurologist again who proceeded to tell me I should not look on the computer and it was time for a muscle biopsy. I specifically remember asking her "why do you NOT think he has SMA" I said we are not doing a biopsy until the SMA test is run and sure enough one week later she called me with the results of the test. Taysen was 2 years old. Even though I knew, it was still the most devastating day in my life. I could not and will not imagine life without my beautiful son. I became desperate to get him on a new drug, but nobody would prescribe it for him because it was experimental. In May 2007 we drove to Salt Lake City, Utah to see the most amazing Dr. we have ever met, Dr. Kathryn Swoboda. We recieved so much proactive and detailed information on SMA.

Taysen began taking valproic acid and carnitine at this time and we believe it is slowing down the progression of SMA. in fact, his last EMG actually showed new nerve growth. In March he began taking liquid Albuterol and has gained a couple new skills since adding that drug to the mix. Taysen does lots of therapy including swimming in his therapy pool, riding his pony, standing in the stander, stretching, wearing braces and using his cough assist and bipap to be as proactive as we can. We are blessed beyond words with this amazing little boy and are so thankful that God has trusted us to be his parents.

"My grace is sufficient for you, for my power is made perfect in weakness" 2 Corinthians 12:9