Watch for a sweet message from Griff at the end.  Love this boy!  He just makes my heart smile.
~Martha

OK, video test here.  I uploaded a video of Griff at therapy yesterday so you can get an idea of what he does and how far he has come.  I'll try some more later if this one works.  We are at the end of an intensive therapy at Vanderbilt.  Griff has had therapy 3 days a week for 2 hours a session for 6 weeks.  Plus, he has has an hour of horseback therapy and starts swimming on Friday.  This intensive has been so awesome for him.  He is doing so well on his loft strands (walking sticks).  And, has taken several steps with no assistance in the past few weeks at therapy.  This is Ms. Laura in the video with him.  He gets so tickled that he falls at the end.  But, what is not in the video is that he pushes Ms. Laura over with the ball and just starts cracking up.  See the below picture.

In the above picture Griff walks to Ms. Laura with his hands and the she pulls the green band.  It snapped at the end.  Then Griff flies back.

Happy Weekend All!  More later.
Martha

A Photo Trip down MEMORY LANE

I've been super nostalgic lately.  Of course, the kids starting Kindergarten has really made me think about how far we have come in the past few year.  But also, a friend of mine had a little girl at 26 weeks and I have been reliving our NICU days with every one of her CaringBridge posts.  And, one of our favorite NICU doctors is retiring and I was looking through itty bitty baby pictures trying to find a photo of Dr. Rojas.

So, take a step down memory lane with me...

Griff at just a few days old.  1 lb, 14 oz, 16 inches long.

Gabby, 1 lb, 6 oz, 12 inches long.

Gracie, 1 lb, 8 oz, 12 inches long.

We've shown this one a lot, but it was our 1st family picture, March 27, 2007.  The kids were just 2 1/2 months old.  Seems like forever ago, but I remember this moment so vividly!

January 6, 2008.  Griff, Gabby and Gracie celebrate their 1st birthday!  It is Gabby, Griff and Gracie from left to right.

2nd Birthday, 2009.

Gabby on her 3rd birthday.  Love that face and smile!

Griff, some things never change :)

Sweet Gracie.

Their 4th birthday is Ms. Leah and Ms. Lindsey's class.

And finally...

Gracie strikes a post on the 1st day of school!

Gabby loves colorful clothes!

Perhaps his last 1st of school picture with his walker...!

I'll update soon with how well they are doing at school, Griff's walking stick progress, our new intensive therapy and the girl's dance class.  When we took the photos at the top of the page just after the kids were born, the start of kindergarten was the furthest thing from our minds.  I remember looking at the 3 pound baby in the incubator next to us and just dreaming of the day when our babies would be 3 pounds.  Now, Griff is pushing 50 pounds and is getting so tall! Gabby is about the same height and Gracie, well, she can fit into the tiniest spot and just cuddle.

Have a great one!
Martha

Cast Camp is Over

I took home one very happy boy this afternoon!  Someone was so glad to get his cast off.  It seemed to itch him much more this time and he did get a big bug bite right where the cast hit his upper arm.   So, Griff came home with a goody bag from camp.  What does one get from constraint camp?  Well, there is a pencil sharpner, 2 pencils, a sucker, plastic coins ( I have to say that this one seemed weird at first, but great for the pincer grasp on the right hand), 3 packs of homemade play-doh (great for squeezing w/ righty), a whistle (might hide this one) and a toothbrush and toothpaste.  They sent home an adorable picture of him, a t-shirt he painted , a clay something he made (not sure what it is, but you know mommy is keeping it!), a picture with feathers...  This is great because the boy does not like art.  Most of his school art has 1 crayon line through it and that is it.

Here he is with his cousin Caroline.  You can see where his sisters "signed" his cast.

An ambulance was outside therapy yesterday.  He was so excited he could hardly stand it.  He ran straight to it!

And, while Griff was at therapy we went and got some cupcakes and had a little picnic between storms.

A big thank you to Vanderbilt Pediatric Therapies.  We feel so fortunate to be a part of this study, free of charge!  We have the best therapists - Laura and Lindsey!  We have had several therapists at VU and they are all awesome, I even taught one of them years ago.  The 8+ camp therapists and volunteers are all so wonderful w/ 12 kids at this camp.

~Martha

Check out the cast on Griff's arm.  We are fortunate enough to be a part of a research program at Vanderbilt and take part in a week long constraint therapy or, as Griff calls it, "cast camp."  The basic premise is that you cast the good arm and force him to use the weak arm, kind of like you would treat lazy eye.  There are about 10 kids in the class, all his age, all with casts.  It is really cute to see them all with their brightly colored casts and so great for Griff to be with other kids that have the same struggles.

He won't tell me anything that he does, but I managed to get a schedule so I know what he is doing.  There is a lot of sensory work...hands in dry rice, pasta, etc.  They have played with clay, paper mache, and made pudding today (to eat, not stick their hands in.)  They play games, eat lunch and snacks with their weak hands, brush their teeth...  I challenge you to eat a few meals with just your weak hand.  Gabby tried last night and didn't make it long, but it did give her some insight to what Griff is going through.

I'm not going to lie, cast camp is hard on all of us.  It breaks my heart that he has to go through this and it will probably be a yearly event.  Ideally it should be done for 3 weeks straight.  They are cutting the cast off  and adding velcro to it so we can continue to use it.  We slept maybe 3 hours this first night because he was so antsy and kept asking us to take it off.  Tim and I have both been wacked a few times by accident.  Meals are a little more messy and no swimming or water table.  But, we already see improvement in his right hand and the timing, right before school starts, is great.

If you have a few extra seconds, would you click on some of the advertising on this blog?  Our goal is to raise enough money to cover one of his horseback therapy sessions.  I actually signed up on Fab.com, one of the ads that scrolls through, and it has some cool stuff.

One more pic...

You never know who is hanging out in the halls at Vanderbilt Pediatric Therapies.
Martha

Just a year ago...

Tomorrow marks the one year anniversary of Griff's big surgery last summer!  Hard to believe it has been a full year.  This time last year we were meeting with Dr. Parks in St. Louis preparing for the long week ahead and hopeful for all the benefits from the surgery.

This is Griff just before surgery last summer.

Here is Griff just 2 weeks after surgery with Ms. Laura.  His legs were so weak that he could not support his weight.  We spent about 2 months in a wheelchair before he could use his walker again.

So, where are we now, a full year later.  Well, Griff has started walking with walking sticks at therapy!  Our goal is to be done with the walker by the end of the year.  He really needs practice on the stick.  He needs minimal support, but does lose his balance some on the sticks.  I'll get a picture of him on the sticks next week and post.  Ultimately, we still think he will walk independently and the sticks are certainly a huge step towards that.  The walker, while it provides great independence, is really a fun toy for him.  He sits on the back, does tricks, glides down hills on it, and is a human bulldozer when he has it.  The boy can really fly on that thing.  The problem is, he uses his upper body more than his legs.

Therapy continues to go well and we have settled into our summer routine.  Hip Hop was a no go for Griff.  He would have nothing to do with it!  But, he is getting his regular OT and PT twice a week + Saddle Up! for therapeutic riding + Saddle Up! for hippotherapy + swim lessons.  Tuesday is his therapy day off :)  Above is Griff on Piggy for his therapeutic riding.  He is with 2 of the wonderful volunteers there and learns all about horses and plays games.

Above is hippotherapy.  Notice he is riding backwards and without a saddle.  This really involves the core and forces him to balance.

He is sitting in the other room right now with his braces on.  We are at the 2 hour mark.  He does better when I am not in there.  I think we are on our 3rd Team Umizoomi episode :)

And, can not leave out the girls.  Here is everyone with Grandmom on our Florida trip.
Happy Summer all!  Stay cool!
~Martha

Happy Everything & Daily Bracing

First, I'll start by saying HAPPY EVERYTHING!  That includes mom's birthday, our anniversary, mom and dad's anniversary, father's day, family coming in town...

Love the beach!

This one cracks me up because a wave came and Gracie wouldn't put her feet down.

But, the real reason for this post.  Here is a small glimpse into what we do daily to help get Griff to where he needs to be.

This is the full view.  There are knee immobilizers, heel cord/foot braces, and under it all is the "tickle machine."

These stretch his heel cords to help him stand flat footed.

This is an e-stem machine to stimulate the muscles and help them grow and develop.

We are a little out of routine because of vacation.  But, we're getting back in the flow - I promise Ms. Laura (our wonderful PT.)  Ideally, Griff would sleep through the night with both sets of braces.  But, we can't seem to get him there.  He wakes up crying 2-3 hours after we put them on.  Instead, our goal is to get them on him for at least 4 hours a day with 30 minutes of the tickle machine.  Luckily, "dude" likes tv and that helps him pass the time.

Martha

Happy Summer!

We hope you are all having a wonderful summer!  We have finally settled down and are getting to relax a bit.  The girls had PreK graduation, Griff finished his year, and I am finally done w/ school, inservice and the yearbook!  The kids got to spend their first few days of summer at Harpeth Hall while I wrapped things up there.

Now that I am off, I get to go to all of Griff's therapies and horseback riding.  One, mom and dad get a break from helping us out.  Two, I get to talk to all of Griff's amazing therapists.  And three, I get to go picture crazy! So, keep checking back, because I am going to get some therapy pictures with Miss Laura.  She loves having her picture taken :)  Daddy gets to go to Saddle Up! for therapeutic riding because we scheduled an evening session.  He'll get some great pictures there.  And, we have signed up for Hip Hop!  The instructor is nice enough to let Griff try out a class before we commit.

Most exciting though, while I was talk to Miss Laura at therapy on Wednesday, Griff just decided to walk away from her and come to me.  He took 3 amazing steps!  We weren't even working on that at the moment, he just decided to do it!  So, we practiced it for awhile and he consistently took 2-3 great steps.  He is also climbing stairs really well and we have a goal for the end of the walker.  More on that next time when I get some good therapy pictures, but Griff has been walking with walking sticks and is getting pretty darn good.  We are hoping to have him on those full time sometime between the end of the summer and the end of the year.  He just needs practice and confidence.

On a break my heart note, we were leaving the play area at Chick-fil-A and Griff told me that a boy in there called him "different."  Griff told me "I'm not different."  We have talked about it a few times and how he is different from Gracie, and Gracie is different from Gabby, and Gabby is different mommy...  My friend Lori is so grounded in her faith, she is such a rock for me.  She said to make sure I tell him that God isn't finished with him and He has a great plan for him.  That is so true and my little "Dude" has already touched so many people.

What would a post be without a picture.  This is not a recent one.  I'm on Tim's computer and don't have my folders and folders of pictures.  But, this is a goodie!  I will have to say that is it almost 11:00 pm and Griff is sitting her next to me wide awake!  Someone actually had a nap today and now is wide awake!

And, this one is just cute too!
~Martha (and Griff)

A Mommy Moment

Having triplets is just normal to us.  This is all we know.  Yes, we were shocked when we found out it was 3.  But, it was so much fun seeing the looks on everyone else's faces when we told them.  We just go on everyday living our lives, getting 2 carts at Costco, taking all 3 to the Puffy Muffin since they were in carriers and now having to order 3 meals for them, buckling 3 kids into the car, getting a car with a 3rd row so they can't touch each other...  I could even carry all 3 in my arms for a long time.  You just make it work.  Every now and then it just hits me, Holy Cow, I HAVE TRIPLETS!  Tonight was one of those moments.  This is my gang at dinner tonight...

Today was award's day at Griff's school.  He got the award for "Best Dinosaur Stomp".  That should make his PTs proud since we are trying to get him to not drag his feet.  That is Griff's principal standing behind him after he got his award.

This weekend was awesome here in Nashville.  We broke out the slip 'n slide and had a ball in the front yard.

Happy Summer All!

Martha

Saddle Up!

I've been sitting here trying to find the words to give Saddle Up! enough praise.  Basically, to Griff, they hung the moon.  Check out the smile on his face.

The volunteers are amazing.  The administration is so positive and organized.  The horses are gentle and precious.  And, the kids, well, they are just plain happy!

Saddle Up! offers recreational therapeutic riding.  Technically, it is not therapy.  The kids are learning riding skills and terminology.  They are increasing physical, social and communication skills.

They are launching a Hippotherapy pilot program this summer.  Here is the technical definition and difference from therapeutic riding... "Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. A foundation is established to improve neurological function and sensory processing, which can be generalized to a wide range of daily activities. Unlike therapeutic horseback riding (where specific riding skills are taught), the movement of the horse is a means to a treatment goal when utilizing hippotherapy as a treatment strategy."  IWikipedia)  
Hippotherapy starts in June, I'll share more then.

Bottom line, Saddle Up! is an amazing place for all kinds of kids with special needs.  If you know of anyone who might benefit, have them get in touch with the people at Saddle Up!  (http://www.saddleupnashville.org/)  There is a waiting list, but it absolutely worth the wait.

That's Piggy with Griff.
~Martha

7 things you don't know about a special needs parent

I totally borrowed this from someone else.  Her son has Trisomy 18.  Man, she sure sums it up.  These are her words and she is speaking about her son Jacob, but I so get it!  In addition to her list, I would add that it is still hard for me to see pictures of friends holding their babies just after they were born.  It was over a month before I got to hold any of my children and 2 1/2 months before I got to hold them all together.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs.  Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.

5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

Therapy at Play

There they go to a slide Griff discovered that he climbed up and down all by himself.  Now I'm on the quest to find one for either home or school.

AWESOME!!!  He loved it. And, he was 100% independent on this slide and cube.

So, daddy did enjoy throwing him into the pit.  But, it was work getting out.

And, not to leave the sisters out.  They had fun too.

Happy birthday Gwenelise!  Thanks for including us on your special day.

Anything is therapy

One thing I have learned after our therapy and Vanderbilt, the kid's early therapies, and our 3 week intensive in Birmingham is that just about anything is therapy.  Every visit to Monkey's Treehouse is an adventure up the stairs and down the slide, playing in the mulch, standing up tall at the train table...  All 3 love the indoor playgrounds at Chick-Fil-A.  He has to climb up the stairs and use his legs, alternate them, and push and pull.  He prefers to go down slides feet first on his tummy and laughs all the way down.  This is big because he hated slides early on and if he went, Tim or I went as well.  Mom and dad just built a playset at their house and Griff has to climb the ladder to go down the slide.  While exhausting for us, playgrounds are great for Griff.  I'm looking forward to when he can navigate them independently, until then I get to be the biggest kid out there.  So, tomorrow, a huge adventure at a friend's birthday...Westside Gymnastics.  Ugh, what have I gotten myself into.  While Griff was not a daredevil early on, he now is!  He goes so fast in his walker and then lifts up his legs to do tricks or glide down the ramp.  (Which, is actually one of the reasons the walker is bad b/c he doesn't have to use his legs as much).  Anyway, a rope swing into a foam pit, an extra bouncy floor mat, trampolines...  Griff will love it all tomorrow.  Mommy will need a nap tomorrow.

The pictures are from Pump it Up last year.  While I don't get to sit back and visit with the other moms, I know Griff is having fun and getting stronger at the same time.  And, along that note, I am debating a hip hop class for Griff and the girls this summer.  Which means, I'll be in hip hop as well.  I'm going to an open house next weekend to get more information.  If they let him take a trial class and see if he'll actually participate, then we might be in!  Hopefully the kids can get their dancing skills from someone else in the family.  Just ask Aunt Leah to see her dance to "Be Our Guest."

I'll try to post some more pictures tomorrow.
~Martha