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
1February 23rd, 2009 at 11:29 am
Dear Anja and Randy,
your little angel AVa is always in my prayer and so are you
. I wish Ava a speedy recovery and hopefully more sleep for Anja. I f I can do anything, please call.
Manuela
2February 23rd, 2009 at 11:45 am
Randy,
I am praying for all of you. Please let us know if we can help out in any way.
Birgit
3February 24th, 2009 at 4:59 pm
Randy & Anja,
We are praying for all of you. We just got through watching some of the pictures of Ava’s, birthday & other pictures. We really enjoyed them. Didnot know that Ava was in the hospital last month. She’s on the prayer list in the Adoration Chapel where Ron & I go each Wednesday & pray for an hour. Randy, we hope she was able to enjoy the package we sent last month. Ron, called A.J. to ask him about you all & he said for us to go on line & this we did.
God bless you all & keep you all safe.
With love,
Ron & Tee Rinker
4February 24th, 2009 at 5:55 pm
Ron & Tee, thanks so much for the prayers and gifts. Ava’s actually in the hospital right now; I accidentally put in January 2008. She’s still recovering from the SMA. She went in last Saturday and we’re hoping she’ll be out by this weekend. BTW, check out the photos in the Jan 2009 folder. I think there are a couple of pics with Ava’s Mardi Gras gifts! God bless, Randy
5February 24th, 2009 at 5:57 pm
Birgit, Manuela, and Matthew, thanks so much for the thoughts and prayers. We truly believe the Lord is watching over her and our prayers to Him for the grace of healing are always welcome. God bless and take care, Randy
6August 4th, 2009 at 3:21 am
Hi guys
We haven’t met – I just stumbled across your website whilst searching for something completely unrelated. Anyway, wanted to let you know that your site is very inspirational. As a parent of a child with special needs, I have some understanding of the journey you’ve been on with Ava. She is a gorgeous little girl and is obviously surrounded by the very best family she could ask for! Keep your positivity up – I really hope that a cure comes through for your daughter soon.
Love and light,
Caroline x