an all over good day...

Hello Friends!


Evie had another EEG this morning, and she had no seizures!!! She just got her injection and we are going home at 3pm, horray!


The clowns from the circus came to the hospital yesterday, and Lyla had to teach the clown what happens when you push her nose:

his wasn't working...

Lyla showed him what to do

it was so funny!

EEG pics

photos by Brian Lehmann

the NEWS we've been waiting for!

Hi Friends!

Still here, still seizures but they are subclinical (she doesn't do anything outwardly to suggest she's seizing). Planning to do more IV medication tomorrow and hopefully go home Friday.

ONTO THE GOOD NEWS! Evie had her skeletal x-rays last Friday... and her bones are showing signs of improvment!!! Especially her long bones (arms/legs) and ribs. They are all showing "new bone formation," LOVE those words! I cant wait until her little ribbies are strong and she can get off of this oxygen. I miss my "wireless" sweet baby face so much. This is the news we've been waiting for, it shows that her clinical trial is working. PRAISE GOD! A lot of people have been asking what we do next and I finally have an answer... after these 24 weeks we move into a 2 year "extension study." Same drug, 3x a week at home, with doctor visits every 3 months instead of weekly (: We can do that!!!

Well I'm typing with one hand so I can hold Eve, I will update more later.

Love you friends!!! Love sharing the news with you!

"I wait quietly before God, for my victory comes from him." Psalm 62:1
Thanks Patti!

better afternoon (:

Hi Friends (:

Thanks for checking in, Evie had a much better afternoon today. She had an EEG this morning (lots of wires on her head, recording her brain activity) and she had around 6 seizures in under an hour... not good, and totally unexpected. They put her back on the seizure medicine she was on in October when she was first having seizures, and she is responding beautifully. Awake... smiling... napping peacefully.... all good things.

Hopefully we'll be home soon, and I'll have more smiley pictures to post.

Got ANOTHER great email tonight (Thanks Amanda!) with my heart advice for the day, "Fix your eyes on Me, the One who never changes." Never changes, and loves me more than I can comprehend... I'll take that (:

Love you friends!

don't get too comfortable, mom!

Oh friends, we're back!

I was missing this broken recliner so much that Evie decided to re-admit herself to the hospital... and after a mere 30 seconds on the peds floor, she stopped breathing long enough to get us back into the PICU.

Details... we called the pediatrician Sunday because Evie was so restless from what we thought was narcotics withdrawl so they perscribed us some Ativan... after giving it once last night she set off her apnea alarm (meaning she stopped breathing for 20+ seconds). Today she intermittently stopped breathing and this evening was doing it as frequently as every 20 minutes. Her O2 saturation would drop in the 60s and 70s, and then we would blow gently in her face, and move her around and she would go back up... but on the peds floor she went down to 5... which is bad. Under 90 is bad, so 5 is really bad. So they called "code" and we were swiftly taken back to the PICU.

Evie had a few seizures tonight, so that may be what was happening all along. The docs are going to try some medicine that helped her seizures back in October. Not real happy about seizures, but at least we know what has worked in the past and it's not a "new" problem.

I am actually doing okay, I'm past the emotional tired phase of the evening to the delirious "i'm going to regret this in the morning" phase. It's nice that we know most of the people around here and we are in good hands. Once they get Evie's IV placed, I will go to bed (:

Thanks for praying for us (: If you could pray that we could get this figured out accurately and quickly that would be wonderful. I am already feeling guilty for putting Lyla through this again so soon. Hopefully it will just be a few days.

Love you friends. I'll be thanking God for you from my plastic burgundy recliner (:

home!!!

Hi Friends!

We were discharged late this morning from the hospital and have been spending the rest of the day unpacking, resting, and catching up. Evie is doing great, she has taken two bottles by mouth, so hopefully she will continue to eat well and we can take this NG tube out tomorrow!

I have permission to post our new friend Aria's blog, it is aria.org.nz . They have an amazing story of faith through the struggles of a transplant. Check it out and add her to your prayer list!

Here are a few pictures from the past 2 weeks (:

Love you!

one of many reasons Lyla wanted to stay at the hotel!

Evie's first pic off of the vent...

Lyla, nurses, and birthday cupcakes

Evie so glad to be home!

The Elsaesser Girls (:

blessings, blessings, and more blessings...

Happy 5 Month Birthday Evie Jayne!!!

What a blessing to celebrate 5 months of Evie's life that we weren't supposed to have. John bought cupcakes today at the grocery store, and Lyla distributed them to nurses and friends we have made on our floor. When the nurses asked Lyla what they were for she would say "For Evie Jayne Jayne!" It brought so much joy to my heart to watch one of my kids celebrating the other.

More blessings, we are probably going home tomorrow! Yes... TOMORROW! Evie had a good day and is on normal oxygen (instead of high flow - for you health professionals), the kind we have at home. We get two new pieces of equipment to take with us... a feeding pump, and a home suction machine. Add that to the oxygen concentrator, cough assist device, pulse oximeter, and apnea monitor and we could run a full service health clinic! We tried to feed Evie by mouth today but she just didn't seem quite confident and I didn't want to push it, which is why we are taking the pump home.

The biggest blessing is that I got yet another perspective adjustment while spending nearly two weeks here with Evie. The fact is, two weeks in the hospital is NOTHING compared to what some families are going through here. Not to mention the fact that we are hospitalized in our home town, where almost all of my extended family lives. I met a wonderful family across the hall, who has flown halfway across the world to get their daughter a life saving transplant. I need to ask her mother for permission to pass along their blog. It is worth reading, and if you have a praying heart I would encourage you to pray this little girl, and all of the transplant kids. For now you can call her "the girl across the hall from Evie," God knows who you are talking about (: They could be here for months. I hope we can spend time with them outside of the hospital and give them a place to kick up their feet.

In conclusion, Thank you Lord! that Evie is getting well, and for surrounding us with kind, caring, and knowledgeable doctors, nurses, and new friends. We have had an amazing nursing staff which makes a world of difference.

Love you friends! Thanks for journeying with us, and praying for Evie. We are exhaustedly excited to go home and get some rest (: