Home Upgrades:
The fence is almost complete! Yay! After 2 weekends of hard work, and many many decisions later, the fence is in working order! We had so much great help and it looks awesome! Knowing the girls can play back there and can’t go anywhere gives me such peace of mind.
While the fence went up, I painted the kitchen and dining room! It got an upgrade from yellow to gray. I have a friend who is in the process of making wall art for me.
MCC Sale:
I grew up going to the MCC sale and loving verenika! If that is a food you have never experienced… you’re seriously missing out! Dave, Ava and I eat ours with ham gravy. Adelynn prefers syrup.
Each year Adelynn asks to go down the slide. This year Ava went too. They had a blast!
Operation Toddler Bed:
I was not in a hurry to transition Ava to her toddler bed, but when they climb out, you run the risk of them getting hurt. However, she is still in the process of learning to stay in bed. When she chooses not to nap, it makes the rest of the day long. When she chooses to fall asleep on the couch next to me, it makes it hard for me to want to get up!
Ava just had her 2 year appointment. She is 99% on the charts in height (not surprising). The most interesting part of the the transition has been her ways of waking me up in the mornings. I never know what to expect. Instead of me waking up first, it has been her. One day I woke up and heard her running water in the bathroom sink. Another day I was serenaded awake with a kazoo. Then Dave woke up to a toddler who had helped herself to the TV at a very early hour. Never a dull moment with this one!
This weekend:
Probably the biggest thing that recently happened in our lives occurred this weekend. At 6:15 Saturday morning, I heard a groaning sound coming from Adelynn’s room. I thought she was having a bad dream. I tapped Dave to listen with me and he got up. I heard him pound twice on her back before saying “Cassi come in here.” He had found her on her floor over a pile of vomit. He picked her up and we tried to wake her up with no luck. We tried everything but we absolutely couldn’t get her to open her eyes. I knew my Dad was probably awake and they live pretty close. He hurried over and we rushed to the hospital. We were both absolutely terrified and your mind can quickly go to the worst places.
She eventually started opening her eyes but not talking. A while later she was talking again. That was a relief! The Hutch ER ran every test you can imagine. UTI actually would have been a logical explanation, but everything was negative. I had texted my pediatrician friend in a group text asking for prayer. She was telling me not to let them send her home and that Wesley is the best place to be. Then they did sent us to Wesley and we felt we were in good hands there. Dave and Adelynn rode over in the ambulance. She was excited for that but only made it 5 minutes before falling asleep. As soon as we got there, they hooked her up and let her watch Mickey Mouse while they ran the EEG (they don’t have those capabilities in Hutch). If you don’t know what an EEG is (I wouldn’t have) it basically looks at the electricity in your brain.
That test was done from 11:30 AM – 12:00 PM.
Sleeping like a princess while waiting for results. (Pluto photo bomb)
Dave too. But not so princess like.
I visited the mini Starbucks while I waited. Look at that cute little menu!
And after nap… dessert first!
We waited until about 7:30 PM for the neurologist to come by and give us the results.That sure made for a long day. The EEG showed highly abnormal electrical brain activity, which means she had a seizure. A fairly long one. The timing was a blur, but it would have been at least 15 minutes long.
Sunday afternoon she had an MRI to check her left frontal lobe, which is where the activity was occurring. That would determine if it was structural or electrical. Structural would be a cyst, tumor, or other scary deformity. We were praying it was electrical! Somebody dropped the ball and she had to wait until 2:30 for her MRI. Normally kids go first because they can’t wait as long to eat. The poor girl wasn’t allowed to eat all day and was absolutely starving. Our day nurse that day was not good, which was the worst time to have a bad nurse. The rest of the nurses during the stay were great! Dave and I definitely learned – even in the Hutch ER – how to be an advocate for your child. Watching Dave look square in the face of the bad nurse and telling her to chill out while he calmed down his child was an impressive moment! (I had my moment in the Hutch ER when they wanted to give her a suppository. Needless to say, didn’t happen. #supermom)
Neurologist Dr. Shah came by around 7:00 PM with results. He said her brain looked perfectly normal! That was the best news we could have hoped for! She woke up around 7:30 PM. The nurse we had then was fantastic and got Adelynn food right away.
She ate quite a bit of food and kept on smiling! They moved us to the regular pediatric unit which was SO much better than the PICU. The PICU was basically like an ER with only curtains dividing us. (We knew everything about our neighbor except what they looked like. I can tell you all her medical history, what she does with her life, her family’s dogs names and how grumpy her Grandpa is – I heard every word he said.) In the Pediatric unit, having a door that closes, lights that turn off at a decent time at night, your own bathroom… ah. Adelynn’s favorite part was probably that she wasn’t hooked up to so many monitors 24/7 like she was in the PICU. They only came to take vitals every 4 hours. I gave her a bath and then combed her hair while she ate and watched Big Hero 6. Her hair was pretty crazy from all of the electrodes and their paste the day before. She had a splint on her arm to keep her from bending it at the IV site. They took it off while she slept after her MRI. She would not bend her elbow for anything! They saran wrapped it so it would stay dry during her bath. I’ll be darned if a single drop of water got on that thing. She would lay back to get her hair washed and that left arm would be straight up in the air! We still can’t get her to willingly bend it. I’m sure it’s somewhat stiff, so she now has skills at one-handed eating. She slept well that night on a full tummy.
I got to snuggle Ava and Bella for a little bit before I went back to the hospital this morning!
In true Adelynn fashion, she was a champ. She never lost her sense of humor and was pretty compliant with the nurses. The only time she struggled was when she was food deprived – as anyone would. All the nurses complimented her on her manners. She’s such a sweet girl!
Monday morning Dr. Shaw discussed medication info with Dave before I got there. We were finally ready to go home! She was all spunk after that! My friend Amee stopped by to bring us coffee. I have to say that I had 3 friends that morning offer to bring me coffee! They certainly know the way to my heart!!! Amee was first, so we accepted her offer :) Adelynn got to play in the play room there while we sipped Starbucks. We discovered a “herd” (Tower/Kine) of this animal:
Cow? Giraffe? Gir-ow? Cowaffe? Votes?
Once Adelynn beat Dave at a game of checkers in the playroom, we got our discharge papers taken care of and off we went! Adelynn had eaten lunch, but ate a celebratory cookie at Panera. She made it most of the way home before falling asleep.
We will read through her papers tomorrow to understand any restrictions she has on life. That’s honestly such a hard thing to swallow because you just want them to be carefree kids who can do anything every other kid can! That’s what I am currently struggling with – partly because she always has been! The good news is that she will have a liquid medicine to take twice a day for probably the next 2 years. We also have a medicine to stop a seizure if it would occur and last longer than 3 minutes. The odds of her outgrowing seizure activity is SUPER high. We are so grateful for that! She has a follow up with the neurologist in 6 weeks. They will repeat the EEG then.
She asked for a sticker and a balloon and she got both! Her reasoning was because she sat so still to have her IV removed. Of course they obliged! Who turns down that polite request?!
We enjoyed the rest of the day at home today. Poor Ava had been such an emotional mess. She knew something was going on but couldn’t understand it. I actually gave her the chicken nuggets she demanded this morning for breakfast – complete with ketchup! (That was a first!) She lived :) Bruce quit wandering around like he had been for 3 days and Ava was relaxed this evening but struggled going to sleep tonight. We had to explain that everyone would still be here when she woke up and that helped. Dave has tomorrow off too so we can just rest and catch up some more. Adelynn went to bed early tonight and we are all tired I think.
Adelynn missed a soccer game, dance pictures, and her preschool celebration this weekend. We hope she can have some normalcy by going to dance on Thursday. Here are a few more smiles to wrap up this post!
Adelynn made a castle during quiet time.
Broom rides!
.JPG)
