Good to Be Home

 

Kaylee slept in her own bed last night. She texted me at 4:30 am for more medication as her head started hurting pretty bad. I laid with her a bit until she fell asleep again around 5:30 am. She slept until 8:30 am. 

We set a goal of sitting up 4x today for at least 30 minutes each time. She did a great job getting this goal. She sat at the table with played Battleship with Trevor and Othello with me. She also joined us at the table for dinner. She ate a bit more today and drank pretty well. Today she didn't need any zofran and didn't have any nausea for the first time. Yay!

Kaylee has enjoyed seeing Rizzo again. This morning she spontaneously sat up, got down on her hands and knees to pet him, then lifted him up and carried him to the couch. It was so encouraging to see her move and to show some interest in things other than sleep. Yay God.

Man were we blessed today. Trevor stopped in at work for a bit and was handed five homemade meals, which included two pans of lasagna, a ravioli bake, Sloppy Joe meat and chicken with sun-dried tomatoes and penne pasta. Plus gift cards to the movie theater, Zio Johnnos, Subway, Dairy Queen and Pancheros. They also collected $120 for Kaylee when she feels better. 

As if that wasn't enough, Kaylee's club basketball team contacted us and wants to provide us with meals. Then about an hour later our small group from church asked if they could too. Man are we blessed with amazing people all around us! Thank you Jesus!

Kaylee's Home

Exhausted...

Trace is happy to have his sister home

Kianna was with the Shannon's today, as they took her to her soccer tournament. 

Kaylee had a decent night's sleep in between telemetry beeps, which are always a little disturbing. Dr. Zanati came in around 9 am and was happy to hear Kaylee had a good day yesterday. He said if all goes well the rest of the morning then at noon to call and he will discharge her to home.

Once home we should be getting a call from Dr. Buatti, the radiation oncologist to schedule her surgery. She also needs to follow up with the ophthalmologist to complete the visual field defect evaluation and with neurosurgery in 6 weeks.

The physical therapist came by and took Kaylee on the stairs for the first time. She did a flight with SBA and then took a walk.

Kaylee was able to participate in her "My Faith" Sunday school class at church. They called and put her on speaker at the beginning of the class. She was pretty tired by the end of it. It was a lot of stimulation and her headache increased by the end. It was a good discussion though and touched on having faith when bad things happen to us, which was very appropriate.

I woke up a little angry at God today and had a good cry after the Sunday school class. Trevor posted on Facebook that Kaylee is going home today and people are posting, "congrats", "how exciting", and "Praise God". I guess I'm not excited. I'm nervous. She was on an IV yesterday, so now there is pressure again to keep her hydrated. She still doesn't have much of an appetite, so we still have to remind her to eat. She is on constant meds throughout the day so she can function and there is always the risk of another bleed...

Kaylee has been my only focus for the past week and now at home I am "mom" to three kids, not just one. I'm not sure I'm ready to multi-task yet. I'm scared. Our house will have a lot more noise and stimulation than she has been dealing with at the hospital. I'm not sure how she'll handle it, as she still sleeps most the time. I have a lot of fears and uncertainty, which I choose to give to God.

Instead of focusing on my fears, I choose to be thankful for the following:

• Kaylee is alive and without any neurological deficits. This is HUGE.
• God gave me wisdom to call the "on call" doctor last Saturday evening.
• God gave the "on call" doctor wisdom to send us to the ER.
• God gave the ER doctor wisdom to order a spinal tap and CT scan, which found her brain hemorrhage.
• God got Kaylee back to Cedar Rapids for medical care vs being stuck in AZ.
• And much, much more...

Kaylee did make it home today, but it wasn't easy for her. She was exhausted and had a bad headache by the time we got there. Regardless, she's home and we are happy to all be together again. I love the picture of Rizzo lying on her while she rested. He missed her too!

Continued Progress

 

Strawberries from Aunt Stacie

We brought Kaylee up to the Rooftop, where children wave to the crowd during football games.

Sadly no games in April

Kaylee's first wheelchair ride with us

Kaylee's FC United soccer team

Nana Bear and Miles

Kaylee had another night of good sleep. She woke up talking about several dreams she remembered. She ate four mini donuts and finished off the strawberries for breakfast. She has been to the bathroom twice and has walked the hallway 2x already. The doctor wants her to walk 4x today, so we set goals for 9 am, 12 pm, 4 pm and 8 pm. We have met the first two goals with little resistance. Yay!!

She turned on the new "Cinderella" movie, which was encouraging. She fell asleep for part of it, but woke back up for the end. At this point in the day, we seem to be onto something good with the oxycodone and IV fluids.

Dr Zanati was encouraged when he stopped in. The goal is to discharge to home tomorrow if she feels up to it and the rest of the day goes well. 

We feel very encouraged by all the people praying for Kaylee. Trevor has been keeping everyone up to date on her status with daily Facebook posts. The comments and verses shared are encouraging us. Many people share his post, so we know there are hundreds, if not thousands of people praying for Kaylee and our family around the world. 

I have begun keeping a list of encouraging verses people have shared. I enjoy reading through them and sharing them with Kaylee. She is scared about her upcoming surgery and is smiling less and less. The first few days, she was joking around a lot and keeping things lighthearted. Lately, she sleeps through visits with a washcloth on her head and is smiling less, although today has been a bit better.

I told her about all the people praying. Pastor Dave and Tracy stopped by last night and shared a passage God laid on his heart. Afterwards Kaylee said she enjoyed the verse he shared, which was:

"But we have this treasure in jars of clay to show that this all surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:7-10, 16-18.

We are blessed to be surrounded by so many people that love and support us. Trace and Kianna have been taken care of seamlessly. We've had friends and family bring us meals. Kaylee's had visits from friends, youth pastors, senior pastors, siblings, grandparents, aunts and uncles, cousins, second cousins, great uncles, and coaches. 

We have also been blessed by this amazing children's hospital. It is nationally ranked and she has received excellent care. Not to mention the facilities are brand-new. I believe we are among the first to stay on the 10th floor. During Kaylee's MRIs she gets to choose a movie to watch and wears headphones. Very cool!