Secretions, Tummy, Iron, and Fundraiser! (Living w/ Spinal Muscular Atrophy)

Yay!  Jenna's secretions have improved!  It was a very difficult decision, but we have weaned Jenna off the med that helped her be discharged from her month long stay at the hospital.  One of the big side effects is extra secretions and boy did that play a role in Jenna's health.  The secretions greatly improved and I am happy to say her GI system is still moving! 

Our next battle is trying to increase her iron levels.  She cannot handle animal protein and is on a special Amino Acid diet.  The diet has been great for her tummy issues including reflux and gastric emptying, but after years of being on it, her iron levels are pretty low.  Her tummy cannot handle iron supplements well either.   Her neuro has suggested an iron infusion, so we have made an appointment w/ Hematology for a consult.  I guess we wait and see.

Big news for the week... Jenna lost another tooth!  So the Tooth Fairy visited us again and she was real excited!  And yes, it came out during a respiratory treatment... AGAIN.   We are going to have to do daily inventory of her teeth! 

Just a reminder... Jenna's Godmother Renee Gronowski will be running a half marathon on May 29 in honor of Jenna and other children/families with SMA.  Please consider donating to help us find a cure for SMA!  For more information, please visit:  www.firstgiving.com/team-jenna-run-away-sma

Run Away SMA! (Living w/ Spinal Muscular Atrophy)

Renee Gronowski will be running the Buffalo Half-Marathon on May 29, 2011 in honor of Jenna Boguhn, who suffers from Spinal Muscular Atrophy (SMA). She will also be running in honor/memory of all little babies and families that are effected by this disease.

Each quarter mile will represent a SMA family. If you would like to honor your child/friend/family member for a $20 donation, please visit  http://www.firstgiving.com/Team-Jenna-Run-Away-SMA  or contact Mary Boguhn or Renee Gronowski.

100% of all money raised will be donated to the Gwendolyn Strong Foundation, a terrific foundation dedicated to finding a cure for SMA. Please help me raise money and awareness to stop this terrible disease.

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.


Many thanks for your support.






PS: Any SMA families who donate, please feel free to send me a picture of your child for each quarter mile donated!



Secretions (Living w/ Spinal Muscular Atrophy)

Jenna has been dealing with quite a bit of secretions lately.  Well it has acutally been going on for a few weeks now.  She can sit up for small periods of time, but then has to get down due to choking on them.  Today during webcam school, we had to get her down, but at least she was able to finish instruction that way.  If it weren't respiratory season and she was attending school, she wouldn't be able to go b/c of them.  the afternoon is worse than the morning and the evening is worse than the afternoon.  By 8pm she is requiring suctioning every 10 minutes.  This doesn't seem like a cold, but yet it could be.  She doesn't seem sick.  At first we we were thinking it was the meds for her psuedo-obstruction as extra secretions are a big side effect.  We were able to reduce her dose from 7.5 mg to 2.5 mg without any improvement.  So it is pretty safe to say that wasn't the cause.  This afternoon was bad again... almost like the evening.  From about 3pm - 5pm I had to suction her about every 15 minutes and a few cough assist treatments in there as well.  We have pulled the cough assist out into the living room b/c we are needing it more often.  I spoke to the Lung Center this afternoon and we are going to try increasing her Robinul (med that helps control her secretions).  Hopefully that will take care of it.  It will be nice for her to get up again.


My thoughts and prayers are going out to two local families who have lost their children over the past week to SMA.   It is truly heart-breaking.  No parent should ever have to bury their child.