Jaime and I think it may be time for the G-tube.  Nora's feeding tonight was a sad realization that she is starting to choke more often now.  She lunged a few swallows of milk tonight and ended up throwing up most of her dinner on my leg and shoe.  We can't really pretend everything is okay when we know what will happen if she continues to aspirate her food.  We are going to  talk to the doctor tomorrow about scheduling the operation.

We also continue to fight with the local doctors about almost everything.  After the fouth call, we finally made progress on the cough assist machine.  We should have it by the end of the week now.  The RSV vaccination may not be picked up by insurance and it looks like we have to wait until November to start it.  We also finally have an appointment with a Physiatrist.  It only took 6 phone calls and one botched referral.  The Physiatrist is our path to physical therapy and aqua therapy.  So frustrating

Nora received yet another BIGGER gift box from FSMA.org.  FSMA knows their SMA kids.  All the products are SMA specific and Nora already fell in love with a balloon.  We also got Nora's suction machine delivered today.  It's going to take us a while to get comfortable using it.  I did suck out a "bat in the cave" tonight though. Daddy = 1 - Boogies = 0

The pictures are here

 

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Wow, that was a long drive back.  It took nearly 7 hours due to traffic.  So we have the VPA and Carnitine (there are pictures of them in the album).  They taste horrible so Jaime and I are working on methods to make them go down easier.  We give her two doses per day.

Don't go getting all excited about this medication.  There is not enough evidence to say if it will work at all.  Who know.. it could do more harm then good.

So the scary stuff first then some good stuff.  

 One of the many doctors we met with really made the seriousness of her situation hit home.  He explained that really one case of RSV or similar respiratory illness could be fatal for Nora.  At best it would put her in the hospital and probably require BIPAP or vent 24/7/365.  If she get's HIN1 it's ... well you can imagine.   It scary to think that one illness could counteract anything we are trying to fix with the medication.   Obviously we are making some immediate changes for daycare and general illness prevention.  We are also (and the doc was somewhat shocked we weren't already) going to go on the RSV monthly vaccine and get the H1N1 vaccine.  This is something our local doctors should have already put us on which just goes show how little they know about SMA in general.   

We also have a prescription to add a cough assist and suction machine to Nora's expensive health machine arsenal.    bye bye savings account.

Side Note: Jaime and I are going to have to get some tax help as these costs keep getting added on.  We really need to learn about the medical expense write-off or this will drain us.

So the good stuff.

The nurse that we spend the most time with said Nora appears (in her option since that is these SMA ratings are really objective) to be a strong type 1.  She used the term 1.8.  The physical therapist said Nora is not the strongest of the type 1's they enrolled... but she is also not the weakest.   

 

We have the pictures from the trip uploaded here

 

Written by TJ and Jaime

Jaime, Nora, and I are in Columbus, OH participating in the drug trial for VPA (Valproic Acid).  I think the offical name of the drug trial is Carni-VAL.  Regardless, it's two days of hardcore testing to baseline Nora before she received the drug.  FSMA.org has put us up in a very nice hotel near the hospital for two days.   We did one full day of testing today and have another schedule for tomorrow.  Most of the day was spent in physical therapy where she was ranked on specific abilities (rolling over..lifting head, grabbing for items etc.)  We also had a EMG (Electromyogram) and blood work.  They had to poke Nora in both arms before finding a vein because without any muscle the veins don't stay put and are harder to hit.  Nora's not a big fan.

So tomorrow is another round of Physical Therapy and we meet with a few more doctors.   Heopfully we will be on the road by 3 PM, drug in hand.

It's a 5.5 hour drive from TN to OH and we have to come back in 3 months.  It will all be worth every bit of effort if this drug helps even the slightest bit.

No pictures for now.... we're limited to hotel wireless so uploading is a pain.

Also, incase you haven't noticed, we've changed the commenting ability on the website (we love when you comment).  We also added a new video section to allow us to add more videos and added a place to view all the pictures from our hundreds of blog updates.  It's a work in progress though.