Home modifications continue! In 2007 we installed wood floors downstairs. And we have a contractor scheduled to install wood floors upstairs so Ava can roll around in her own room!
But within a year or so, Ava will be too heavy to carry upstairs. We’ll need to install a residential lift for Ava to get to her room and bathroom. If you would like to help us, please use the fundraising button to the right. Thanks & God bless!
Ava came home Friday afternoon and is doing well! She’s using her oxygen occasionally but otherwise has been fairly chipper. She does tire out pretty easily but when energetic, she wheel’s around in her chair, playing with her toys on her little tables.
Mommy’s still exhausted and fighting off a bad cold.
And Heather’s still being a champ, giving Ava the best care she can.
We’ll write a bit more later. But for now, praise God Ava’s home and doing better.
God bless, Randy & Anja
(Note: We corrected video number one in the earlier post below. It did not work earlier, but does now.)
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.
Information for parents of newly diagnosed children
An SMA diagnosis of your child is frightening and heartbreaking, but DON'T GIVE UP! There is hope! And life will go on. Your view of a happy life will change in different ways than you thought! See the links below and God bless you & your child:
