Ava’s still in the hospital (Fairfax Inova) with RSV, though she’s gotten a bit better, praise God!
She was moved from the Intermediate Care Ward to the Surgical Ward, which the nurses tell us means Ava’s gotten better.
Ava is perkier though she still has severe, phlegmy coughs and requires oxygen and the cough assist machine and suction to clear out the mucus (watch one of the videos below).
And today for some reason, her little belly swelled up as big as a cantaloupe and tight as a drum. The doctor took her off the Vivonex feeding in her NG tube to give her time to pass enough gas and she did. Later, they took an x-ray to see if the NG tube had moved from her duodenum in the last few days; that might cause the gas swelling in her stomach.
At the time of this posting, we haven’t received the results of the x-ray and still don’t know what’s causing the gas buildup.
Luckily, Ava began nibbling on some food finally. Mommy and Ava watched the Food Channel all day, so maybe that gave Ava some hints! 
Meanwhile, Mommy is sick herself with a bad head cold. She’s been at the hospital for 5 days straight and the 4 days prior to Ava’s admission, Mommy and Heather had been giving Ava around the clock care. So basically, Mommy’s worn out and sick and now that Daddy’s finally gotten better, he’s got to go to work in the morning. 
Here are a few photos of Ava in bed today. And below are three videos of Ava we took too.
Thanks to everyone for the calls, gifts, and prayers! You may not realize it, but they do help, especially the prayers. We trust and believe that God’s grace is important to healing, so pray with us.
God bless. Anja & Randy
Ava enjoys a Happy Meal
Ava was admitted to the Innova Fairfax Children’s Hospital Saturday morning and quickly diagnosed with RSV. RSV, or Respiratory syncytial virus, is a respiratory virus that infects the lungs and breathing passages. RSV can usually be overcome quickly by healthy children and adults, but for SMA children, RSV is a severe threat.
Anja and Heather (Ava’s nurse) treated Ava for a few days when the symptoms seemed like just a cold. They gave her round-the-clock care using the coughing machine, a suction machine, Ava’s nebulizer with albuterol and pulmozyme, and an oxygen tank. Ava went to her lung doctor on Thursday and received an antibiotic, but by Saturday morning Ava could not maintain enough oxygen levels in her blood (we have a pulse oximeter that measures Ava’s pulse rate and oxygen levels) and we took her to the ER.
Unfortunately, during this entire time, Randy’s been down with pretty much the same symptoms at home and hasn’t been able to help much (except for writing this blog entry.
Ava’s stabilized at the hospital, her oxygen saturation rates are up, they’ve been able to feed her Vivonex using an NG tube (here’s a video) but she’s still coughing a lot, her lungs haven’t cleared, and she needs medicine to keep her fever down.
Please pray for her this morning, that our Lord give her a quick recovery in the hospital. Also say a prayer for Anja, who’s been getting too little sleep for a week now, that she has the strength she needs.
We’ve posted some January photos of Ava (including her Make a Wish Party!) and a recent video of Ava during more fun times. Hopefully we’ll have our dynamite-package of joy back soon, all rested and feeling better. God bless all!
Hack