Ears...

Since the hospitalization in January, Avery had been recovering  very well, and near 100% again. Up until a few weeks back, when she got an ear infection, causing a fever ,which triggered a seizure sending Avery via ambulance to the ER for the afternoon. Unfortunately this is to typical for Dravet kids. A simple illness or infection turns into a life threatening seizure for them, and nightmares for the parents. A worry we have every minute of every day. This is just another day in our lives...

This is the 2nd ear infection this year, and warranted a prompt visit to a ENT specialist. He quickly assessed that Avery would benefit from getting tubes in her ears, and we scheduled an appointment for surgery to be this morning.

  The surgery was at 8am, and went very well. We were able to be home by lunchtime. Avery's a bit groggy, hungry, and sleeping quite a bit, but doing OK. Overall she recovering as expected, and we are hopeful she continues with no seizures or complications.  Thanks for your prayers.

Pneumonia and More...

Avery's Pneumonia continued through the month January. On Weds, January 25th Debbie took Avery into the clinic to get checked out. Avery's condition had been getting worse, as the previous weekend she starting sleeping more of the day, and cough half the night. The antibiotics she was on, weren't doing anything for her. I got a call from Debbie, that the Dr. said Avery will need to be hospitalized, as her O2's were too low. So off to Gillette she went. When Avery got there, she was running a temp as well. She had been running a fever off and on all month. We'd give her advil for a few days, and it would go away, then a few days later fever again, and repeat... So, Advil was started in addition to IV antibiotics and nebulizations.


Avery hasn't lost her appetite!

By Thursday afternoon the fever was gone, and Advil doses were ceased. Friday morning came, and with that a fever again! Avery got a Nebulizer dose of Albuterol at 8am, and was in the middle of her morning meds when her temp spiked, and she began to seize. Debbie quickly called for a nurse, and administered 2 diastats with no effect. They then pushed Ativan via IV also with no effect, but with Avery's lungs still in rough shape from pneumonia, her lips started turning blue, and her O2 stats dropped. They quickly rushed her to PICU to intubate and sedate her, requiring her breathing on a vent. After 55 minutes, the seizure was finally stopped.




Avery on vent with her puppies.

 Avery remained on the vent for 48 hours until Sunday afternoon. She was extubated, but was still very tired, so she slept the rest of the day. But woke up for a bit when Debbie got to hold her in the rocking chair.

Avery continued to come around a little more each day. On Tuesday, I spent most of the day with her while Debbie took a break from the hospital and went to work for the evening. To Avery's surprise, the Music Therapist stopped in for a visit, and she loved every minute she was there.



Avery playing with Coral the Music Therapist



Dr. Avery Checking out her puppy

Finally on Weds. after she had been off O2 for a few days, and breathing well on her own, she was doing well enough to go home. Yeah!!! Avery was all smiles the drive home, and we decided to pick up Nick from school early on the way home.




Happy to see each other!

 Thank you everyone for your thoughts and prayers for Avery while she was in hospital. We are thankful to be all be under one roof again.

Happy New Year!

Hope everyone had a merry Christmas and Happy New Year! Avery had a great Christmas with both sides of our families. Avery received a number of generous gifts, and she's enjoyed all of them. Thank you.
She's especially proud  of her pink guitar.



Avery playing a song on her guitar

 Avery absolutely loves music, her singing and playing musical instruments has certainly struck a note as the house has been filled with her singing and playing songs. A future musician?

New Years Eve was spent with the Franklin side of the my family at Renae and Bob's. Always a great seeing everyone and spending time with all of the family. Avery was having a ball playing with the other cousins. She also couldn't stop looking out the window, watching the dogs.

Later that night, it was clear Avery was coming down with something. As she was sleeping, she was "shivering", I quickly grabbed the thermometer, and checked her temp, Normal, waited a minute, checked it again, normal. Seeing her "shiver" quickly made us think of last February, when she was doing this same thing in the middle of the night, same "normal" temp, but minutes later turned into a generalized tonic clonic seizure, calling for 2 Diastat's, and a ambulance ride to the Hastings ER. Which they then transferred her up to Regions ER for the rest of the night. Needless to say, when we saw her shivering, we were immediately on edge! In efforts to prevent it evolving into a seizure, we gave her some Advil to help prevent a fever, and oral Valium to help prevent a seizure. It worked! She slept the rest of the night, and we felt like we dodged a big one there.

That same night we happened to be getting a few snowflakes for once this winter, enough that I went out snowplowing in the morning. But when I got home later in the morning, Debbie said Avery was lethargic all morning, and not herself. She was way "off", something was up. I took her into the clinic, only to find out it was closed being new years day, So, we headed over to the ER. Once we got in the ER to get checked out, she was already running a temp. Dr. evaluation proved she had a bad Ear Infection, as well as a chest infection! Dr. gave her antibiotics to cover both to avoid an X-ray. A dose of Tylenol, and we we headed home.

Avery seemed to be responding well to the antibiotics all week, as she was getting better each day. She still had a bit of a cough, but seemed to be getting in the clear, or so we thought. Today, Avery got home from school, and we were told she was "off" all morning in school, poor balance, and frequent eye closing head nod seizure activity. Debbie got her into the clinic, and this time they did an evaluation and X-Ray. Good news- Ear infection is gone, Bad news- She has Pneumonia in her right lung, Here we go again...

On a positive note, our friends Brian and Amanda Meyers welcomed a beautiful baby girl into their family last week. Baby Klaire is home now, spending time with her big brothers, Kael and Kyler. Congratulations to them!