11.29.15 T-shirts and Prayer Requests

2 days left to get your new Team Aimee Love shirt. Proceeds go to Aimee's expense fund. Surgery day is 3 weeks away and we ask that you consider wearing either your 'Happiest girls are the prettiest girls' shirt or your new 'Joy is catching' shirt to remember to pray for Aimee through that day. Thank you to all who have supporting our pretty girl with prayer and with funds. We cannot do it on our own!

Also, please pray for Aimee over these coming weeks. First, that she would be healthy and strong going into surgery. Second, for her adjustment to her new supportive chair, which is so supportive that it is hard on her learning to be straight. Third, that her pain would be manageable as we have to back off of our primary pain medication for a period prior to surgery. 

Ps. Here is that t-shirt link again:

https://www.bonfirefunds.com/team-aimee-love

11.20.15 New Home Base

Aimee's new wheels showed up this morning!! Thrilled!! So supportive, actual foam cushions, equipment storage, solid wheels, head strap, and on and on! Seems like it will be perfect for this next season of her life. 

It's kick-up-your-heels good! 

11.18.15 Team Aimee Love

A new Team Aimee Love t-shirt design has been launched. The fund ends on December 1st, so you will have your shirt in time to wear when Aimee goes in for her surgery and to give as Christmas gifts. Check it out here:

https://www.bonfirefunds.com/team-aimee-love

11.12.15 Aimee's Sparrow Project

Our family at St Monica Catholic School

We had a memorable experience a couple of weeks ago at St Monica Catholic School. We were invited as a family to participate in the school assembly introducing Aimee as the Sparrow Project for this school year. This incredible day started with a video about Aimee (You can read the post I wrote introducing Aimee HERE), an introduction of Sparrow Clubs by founder Jeff Leland (Read about the Sparrow story HERE), a little unexpected word from me, and a big blessing from the school. When we walked through the front doors, the very first thing we saw was Aimee's face up on the lobby screen. Walking through the halls, she was greeted by name by the teachers. As the students gathered in the gymnasium, several of them called out a hello to her. It was incredible. Lately I have heard kids mocking her, seen sideways glances, and even have had adults make ignorant comments. To have these sweet kids be so excited for Aimee to be their project was incredibly touching.

Look how excited Aimee was! SO sweet.

Aimee is St Monica's 11th Sparrow project. The principal shared with the students a reminder of how this is an opportunity to be the hands and feet of Jesus. Aimee was given gifts, including this giant elephant, which we named 'Hugsie'. He was given a hug by all the students in pre-school, kindergarten, and 8th grade prior to be given to her.

Several of the classes had made cards for her, which we decorated a corner of her room with at home. 

 All these dear kids gathered around her afterwards, loving on her. It was incredible.

These sweet kids have committed to a huge amount of volunteer hours to raise funds for Aimee through a donor family. Through Sparrow Clubs a fund is also set up in her name that can be given to for a tax deduction by any one who wishes to contribute to the project. We can request money out of this fund to use for respite care, travel expenses, medical bills, and other Aimee needs as they arise. We are just stunned at how God takes care of Aimee. She is loved.

The timing of this all is incredible as we prepare to put Aimee in isolation for 6 weeks prior to her big surgery day. Surgery is scheduled for December 22nd. Please pray along with this amazing school that Aimee would have strength and full health going into the procedure.

Also, if you know of anyone who would like to be a part of this project for Aimee's benefit, please direct them to this link: https://app.etapestry.com/hosted/SparrowClubsUSA/OnlineDonation.html. Be sure to designate the funds to Aimee's sparrow project in the additional information field.

We are so grateful for each gift that helps us care for Aimee.

10.22.15 Big Deal

This is a really, really big deal! Are you ready to read it? Get ready. 

Aimee's insurance has approved her new wheelchair and, from what we can tell, every single little peice of it! You read that right. In a couple of months, she will have a brand new, completely paid for, fully supportive wheelchair. We are incredibly thankful and thrilled. This chair will be a part of her for the next 5 or so years.

It will certainly be bittersweet to move on from her first wheels, which are a symbol to us of our loving community and of God's faithful provision. That incredible experience 4.5 years ago will forever be etched in Aimee's life story and we will never be the same. 

However, Aimee has grown. Her needs have grown. Her smile has grown (beside the point, but still true). Her discomfort and distortion have grown too. It's time to move forward to new wheels. 

10.16.15 BAER

Aimee had a sedated BAER Exam today, which is to check her hearing as sounds are received by her brain. It was a very interesting experience on many levels. 

She has had this test done numerous times. It requires about 90 minutes under anesthesia and we get immediate results discussed with the audiologist. This particular doctor took extra time with Aimee today, as she repeatedly got different results for a particular pitch. After having another doctor review it with her, they made their best interpretation of the data, which was that her hearing in the higher pitches has decreased fairly significantly. Just like every other system, it seems that Aimee's brain/hearing connections are inconsistent. 

More interesting than this was Ed and I's interactions with all of the staff, especially anesthesia and nurses. Typically we have felt like we are trying to convince them that Aimee needs extra care. Today, we had several different experiences of conversations of risk, of them making decisions based upon our opinion, of their concern about the seriousness of Aimee's needs, of their awe about her central apneas, ect. A little terrifying to have the professionals worried, but also kind of wonderful. Finally! They are acknowledging Aimee and not just brushing off our concerns. Finally, they are taking her seriously and understanding that she doesn't fit the mold. Part of this, I think, is simply how much more savvy Ed and I have become. We knew the ins and outs of everything that came up. Ed even was able to make a suggestion to her anesthesiologist that made the procedure safer for Aimee and allowed her to recover faster. They asked me to be in the PACU the whole time with Aimee as soon as the procedure was over and then to decide if we wanted to move her to the floor or go to recovery. 

At the end of it all, Aimee did really well. We got good information about her hearing changes. Most importantly, we got to bring her home! 

9.5.15 Exclamation Point

Yippee zippee! 

Ugh! No! 

My two opposing exclamations on my mind. 

I am filled with excitement after yesterday spending time ordering a new customized wheelchair for Aimee. As she has grown and become more set in her ways, her wonderful wheels have become less supportive. Her needs have changed and we are looking for a chair that will allow her to interact with her siblings and classmates. We were thrilled to spend time going over every single piece of the new chair designed for her needs. We discussed in detail with the equipment provider and the physical therapist every inch from back cushion, side wedges, rib support, and head stability to wheels, equipment storage, washability, and straps. Praying for insurance to cover this amazing new chair. Yippee! Zippee! 

My second exclamation is a sinking realization that the nighttime apneas are creeping back. Each night we are seeing more dramatic lows and they are beginning to increase in number. The o2 worked so wonderfully well... But the change seems to be slipping away. Ugh! No!!!