Saturday, June 30, 2012

Stacking

Ever since Nate began his therapies last year, people have been trying to get him to stack blocks.  I got the impression this was very important to them.  They would try to get him to do it all the time.  Doctors and nurses would ask me about Nate's stacking abilites at appointments.  One really annoying nurse who used to come to our house once a month would ALWAYS make Nate try to stack blocks even though he clearly couldn't even move his wrists.  It all really started to annoy me.  So what, he can't stack blocks.  Add it to the very long list of other "can'ts" in his life and leave the poor kid alone.

Then, during a therapy session a couple of weeks ago, he just did it.  He stacked blocks.  He needed some help holding down the bottom blocks, but he did it.  I was so excited I could hardly stand it.  It may seem silly but I honestly never thought he would be able to stack blocks in his life. 

Now he can stack three blocks without any help at all, and he'll keep going if you steady the bottom blocks for him.  My favorite is when he throws his fist up in the air and says "I did it!".  We are so proud of him.



whoops, wrong block

isn't he the cutest kid you've ever seen?

Therapy

Last September, Nate started having regular therapy visits at home.  He had three visits a week--physical therapy (focusing on gross motor development), occupational therapy (hands and arms), and "early intervention" (primarily focusing on cognitive development since he's considered at-risk for cognitive delay).

It was incredibly difficult to get these therapies at home.  We tried outpatient therapies for a little while and they were horrible for so many reasons.  So after a massive battle with our insurance company, we finally got home visits approved.  These visits have been extremely productive.  Nate has gained so many new skills because of his therapists' expertise. 

We got an unexpected call from our therapists' clinic this week saying that they have not been paid at all from our insurance company yet, and our insurance company is now only offering them 1/6 of the agreed-upon fee.  As much as our therapists love Nate, he's not a charity case and they've basically taken a $6000 bath now.  So, you guessed it, they're not coming anymore.  We're so sad.  And confused.  And frustrated with our insurance company.

This is just the beginning of the fight we're going to have to get therapies back, but this stuff can take months.  Nate is sure going to miss his friends!  Thankfully the early interventionist will still be coming since those visits are paid for by a state agency. 

Nate and his OT



Thursday, June 28, 2012

B-Sides

For as mind-bendingly cute as Nate is, it's really hard to get a good picture of him. I'd say it's like a 1:20 ratio of decent to scary pictures. And even when the pictures are decent, I feel like they still don't quite capture what he really looks like. Anyway, I thought you might enjoy seeing just how unphotogentic he can be.












This kid is too expressive for his own good.

Monday, June 25, 2012

Final Q & A

It was great getting to answer some of your questions.  Now on to the final installment of our little Q & A session...

Q: What is his life expectancy?  Will he have any progress with motor skills?  Or his current condition going to be his forever condition?

A:  SMARD is considered a life-threatening disease because the first symptom to present is diaphragm failure.  Children with the disorder stop breathing due to a paralyzed diaphragm and often die in their sleep.  As a result, many children with SMARD never see their first birthdays.

Nate has obviously (and miraculously) lived through his respiratory failure and we have chosen to artificially ventilate him.  Currently there isn't any evidence to suggest that long-term trach patients will have shortened lives.  But, since SMARD is such a newly discovered disease, it's hard to say exactly what Nate's prognosis is. 

All SMARD children have a paralyzed diaphragm and significant muscle weakness, especially in the lower limbs.  Beyond that, there seems to be a lot of variation in the course of the disease.  Some children have an initial "crash" and then plateau.  Some continue to degenerate and lose muscle.  The lucky ones are able to gain some strength back.  What we have seen over the last year in Nate is a very gradual increase in strength.  He can sit unsupported for longer periods of time, he has learned to army crawl, he can reach his arms over his head again, and he has developed a lot more coordination and strength in his hands.  His therapists have been really impressed at what he's accomplished, especially in the last six months. 

I don't know how far this increase in strength will be able to go.  No SMARD child that I know of has learned to stand or walk after losing that ability (if they are ever able to do it in the first place, Nate has never stood or walked).  We will continue to push him to see what he's capable of, but we know how lucky we are that he is doing as well as he is. 

So the short answer to this question is: we don't know.  He is fragile and we know his life could be short, but we definitely plan for a future with him and don't live every day thinking it may be his last.  We are so grateful for the time we have with him and know his life will be as long as God wants it to be.

Sunday, June 24, 2012

Funny Face

Sorry KC
I've been perfecting the art of the funny face for many years now.  A few weeks ago, I decided Nate was old enough to start working on his own funny faces so we made a few in the mirror together. 

He seemed to have forgotten all about it until the other day when all of a sudden he said "funny face!!" and broke out in a long series of weird expressions.  He has now decided on one funny face that he likes best and he'll make it anytime you ask for it.





He thinks he's hilarious when he does this.  And he kind of is.

Friday, June 22, 2012

Update on the Football Ticket Fundraiser

We're still waiting on the Ticketmaster code. SJSU is redoing their entire online ticketing system and it's taking longer than expected.  But you can still get tickets by calling the ticketing office directly! 

To clarify how the seating works, General Admission is on a first come-first serve basis. Meaning, there is no guaranteed seat for you if you have that ticket. We have been told that this game in particular will be very difficult to find and keep a good seat. They are on track to sell this game out.

I would recommend everyone in your group to sit together in a particular section with reserved seating ($33). This way everyone can sit together and if you would like to show up 5 minutes before kick-off, you will have a seat waiting for you.

When you have your group formed, call Kevin at SJSU and he'll reserve a block of seats for you. His # is 408-924-1245. Let us know if you have questions!

Thursday, June 21, 2012

Dink

Since Nate is not the type to toot his own horn, I'm going to have to do it for him and tell you that he drank three whole ounces of water today.  In less than an hour! 

I realize you are probably asking yourself why you should care about this.  Well, Nate hasn't drunk that much from a bottle in over a year and honestly I didn't even think he was capable of drinking that much anymore.  On a great day, when all the stars are aligned, he'll drink maybe half an ounce throughout the entire day.  Today he just kept asking for "more dink" and chugging away!  It just made me want to give him a big fat kiss. 


greatest profile ever

embarassed at how excited Mom is for him

Sunday, June 17, 2012

Rubberband

Nate's lack of muscle makes him very bendy.  It's hard to believe these acrobatic displays can actually be comfortable, but this was his position of choice last night during storytime. 


If I tried to move his legs, he insisted they go "back up" where they belong.

Channeling Kourtney K


Nate had to get some new sunglasses that were small enough to actually stay on.  What do you think?

Wednesday, June 13, 2012

Dentist

Yesterday was Nate's first trip to the ever-dreaded dentist.  There were a few moments of calm...


...but mostly the morning went like this:


Nate has developed a sixth sense for knowing when he's in a place where people are going to be bugging him.  Often he panics before we even get there.  Nate saw right through the facade of "child-friendly" dental office and cried and cried the whole time.  Poor kid.

We knew Nate was having some issues with his teeth because they were starting to turn a lovely shade of grayish-green.  We learned from the dentist that not eating by mouth causes the teeth to get more build-up, but it also makes the likelihood of cavities very low.  Turns out all Nate needed was a good cleaning to get the stains off and now his teeth are pearly white again. 

The cleaning did not go down without a fight though--for a kid with a disease that makes his muscles weak, he is really, really hard to pin down!  I laid back in the chair with him on my lap and tried my best to keep him still while the dentist worked on him.  He fought and and thrashed until he was so worn out he couldn't move his head or arms anymore.  That's when he started to try to use his tongue to keep the the dentist away.  Everytime that dentist put the cleaning tool in his mouth we would see his tongue start trying to push the tool back out.  He's a fighter.

Yummy Yummy

Some days, when Nate is being particularly wonderful and adorable and sweet and chatty and clever, I remark that I want to eat him for dinner.  This statement isn't so much about cannibalism as it is about my lack of vocabulary.  I simply feel like my current set of senses isn't enough to take in all of his wonderfulness and I need another way to experience him.  Scott gets really freaked out when I say this.  But even he couldn't deny that if we did eat Nate for dinner, he'd be completely delicious.


Having an actual dinner on Valentine's Day. 
Nate looks a little scared that he might be on the menu.


Friday, June 8, 2012

Little League

Last night we took Nate to Cousin Sam's last little league game of the season.  Like the responsible parents we are, we packed ourselves a full picnic dinner and forgot to bring anything warm for Nate (in our defense it was nearing 90 degrees in our apartment when we left).  It was freezing and windy at the ballgame, but Nate borrowed Sam's sweatshirt and spent a lot of time looking for his hands every time they disappeared under the sleeves. 

Nate's interest in the game was fleeting but he enjoyed seeing Grandpa and his cousins and spotting airplanes.  The highlight was Scott taking him down the slide for the first time since he got his trach.  We disconnected his vent, hurried and took him down the slide, gave him a few breaths on the vent, and then did it again.  He normally doesn't like being off the vent but I think it was totally worth it to him this time.  Sorry no pictures, I was too busy making sure the alarms on the vent didn't go off while he was disconnected.



Nate hugging "Big Charlie" as he decided to call him last night

Wednesday, June 6, 2012

Rock On

Nate's love affair with music began early.



These days he's been doing more quiet, introspective listening.  Personally I don't think it's any less intense.

The song he's been into lately says, "Yooooooou better believe it's true" over and over so Nate calls it "You" and asks for it all the time.
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Nate seems to have a deep appreciation for every genre of music he has been exposed to.  But when it comes down to it, this kid wants to rock.  I love him.



P.S. Don't forget to "like" Nate's fundraiser Facebook page and share it with everyone you know!

Sunday, June 3, 2012

Nate the Great's Most Awesome Fundraiser!


BYU vs SJSU discount tickets available the week of June 18th.  All proceeds go to Nate and SMARD research.

Like our Facebook page and share with everyone you know! 

Saturday, June 2, 2012

Way Way High

We spent the afternoon enjoying the lovely weather in Grammy and Grandpa's backyard.  After seeing his cousin Callie getting tossed up in the air over and over by her dad, Nate wanted in.  He kept saying, "High!  Higher!  Way, way high!  Again!"  Turns out he's kind of an adrenaline junkie.

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