12.29.15 Home

It's good to be here. 

Learning together how to manage Aimee here at home. Hopeful to be set up so that one of us can perform most cares on our own, which would allow Ed to return to work. Hospital bed has yet to be approved, but we were desperate for it and will rent ourselves with fundraiser money until insurance makes a decision. 

12.27.15 Update15

Making a late night escape! Thank you thank you for all of the prayers, messages, and Aimee love this past week. We are so grateful! 

Please pray for us as we figure out the transition from round the clock support from the wonderful Seattle Children's nurses to the real world. 

Now to get home to our much missed boys!!

12.27.15 Update14

Good news! Vitals are stable, pain is well managed, and equipment is nearly worked through!! We just finished working a PT to modify her chair for transportation, which is a huge relief, because we were told we need to strap her to the back seat with a safety harness and use a rental wheelchair. Win! 

12.26.15 Update13

Two issues of concern for Aimee medically: 

A new hematocrit level taken, levels are decreasing. Too much more of a fall and we'll end up having to take action. 

Heartrate is high (resting is nearly double her normal), which isn't too surprising because if the stress she is under, but we typically monitor heartrate to determine interventions (cathing, pain, repositioning needs, ect). Trickier for us to understand what she needs without this tool. 

12.25.15 Update12

Special visit today from Nana and Papa who brought a Christmas lunch! 

Granny and Pop Pop came to support Aimee too. 

And as a surprise, Angelique and Nate came with goodies! 

Feeling the Christmas love! 

Catheter came out today and wound dressings were changed. Aimee is alert and even smiling! Thankful for good pain management. :) 

12.25.15 Update11

This past couple of hours Aimee has gotten junkie and her heart rate has gone way up. Had to request some inhaler treatments. Praying after all of this that she did not catch a bug in the hospital!! 

12.25.15 Update10

Merry Christmas dear friends! 

Aimee met Santa this morning. His elves helped name her new friend, the bear, Maple Syrup. :) 

12.24.15 Update9

Good news! Aimee has been transfered out of the ICU to the surgical floor. Cheers! 

She has been started on multiple oral and IV pain meds. The epidural will be removed in a few hours. Making progress! 

12.24.15 Update8

Merry Christmas Eve!

Aimee is doing well overall. She was just taken off of bipap. If she can do well without it for 6 hours, then she can be moved to the surgical floor for the remainder of her stay. 

Plus, she has gained mermaid status. 

12.23.15 Update7

Today has been quite peaceful really. Aimee is startling and agitated some, but she is also resting on continuous bipap, epidural, and just now adding morphine. Our hope is to move out of ICU tomorrow. One step forward at a time. 

12.23.15 Update 6

In ICU for now working towards better urine output, better blood pressure levels, better hematocrit numbers. She is being moved towards her home bipap settings and home mask. Planning to try a little fluids to her stomach soon. She is still very out of it, but showing agitation to being messed with, which is great to see. 

12.23.15 Update5

Tranfusion was a success! Aimee's blood pressure and vitals have stablized. One huge step of progress! 

12.22.15 Surgery Day Update4

Finally able to be with her in the ICU room. Blood loss was significant (pre surgery hematocrit level 39, recent check came back 18). Having a blood transfusion right now. 

12.22.14 Surgery Day Update3

Aimee has been in ICU over an hour. We met with her surgeon 2 hours ago. We are still not able to see her. It is literal torture. It has been over 7 hours since I kissed her cheeks. 

A day of waiting. A day of false promised timelines. A day that I want to end sitting by Aimee's bed, holding her hand. Kissing those cheeks again. Please let me see my little girl! 

12.22.15 Surgery Day Part2

Surgeon says success. He said to prepare for rough nights ahead, but he is pleased with the results. We should be able to be with her in about an hour in the ICU. 

Before:

After:

Check out this sweet girl and her daddy prior to surgery. I love them. 

12.22.15 Surgery Day

Waiting...

Aimee has been under for 5+ hours. We're waiting...

12.21.15 Tomorrow Is D-day

With tears in my eyes, I can officially announce that we made it. Isolation was a success. Aimee is as healthy as I've ever seen her. 

Tomorrow is D-day. Today, I prepare and enjoy a day at home with my 3 smiling babies. 

Aimee's surgery is tomorrow morning. We will check in at 10 and she will be prepped for an 11:30 start. We are expecting it to be completed by 5-6 and plan to post progress and updates as much as we can. 

Please pray. Wear your Aimee shirt if you can to remind you. Pray particularly for successful intubation and extubation. Pray for protection of Aimee's nerves, appropriate levels of bloodloss, and, most of all, peace on her little heart. 

12.17.15 Pre-op

I am sitting in pre-op appts with Aimee today. Feeling nauseous. This is real. I had a crazy inclination not to turn the van into the hospital parking garage earlier. If we run away, she won't need this surgery, right? If we just don't come in, it won't happen. And then, she won't go through all of this pain. And then... She will be in pain for the rest of her life... Jesus, help me to be strong enough to bring Aimee here to go through all of this pain to avoid future pain. Help. 

Coming in Tuesday morning. She will have general anesthesia and nerve block local anesthesia as well. She will have a bed in ICU for the first 24 hours and then move over to the surgical floor. I know I will be scared and I know she will be in pain. Hope that the lack of surprise makes the times calmer. 

Had a spinal traction xray just now. First time pulling her by her legs and shoulders to see how straight she could be. X-ray still came back with a 43 degree thorasic curve. Not what any of us were expecting. She seemed so flexible. Ortho doc says surgery to add growth rods would be kind of unorthodox, but once she hits 50 degrees we'll need to act. 

I just signed a surgery consent form that said Aimee's condition is cerebral palsey. Some times there is no point in arguing particulars. 

Pleasantly surprised that they will not use a spica cast, but a brace instead for the first 6 weeks at least. Easier to care for. Extra padding included for washing purposes! She will still end with a lower cast on her left calf though. 

Surgery will be 4 parts: leg bones cut, angle added, and aligned with plates; thigh muscle lengthened; calf muscle lengthened; and hip socket released, rotated, and grafted bone added. Somewhere around 5-6 hours total. 

Labs taken to confirm pre-operative levels and blood type in case of tranfusions. ICU bed booked. Time set, anesthesia approved, and now the courage to follow through.

Made it back to snuggle with brothers tonight. Rough day for Aimee was merely a test run. 

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!!!

8.28.15 Surgery Schedule

This past week Aimee has met with her two Othopedic doctors who both discussed several surgeries that Aimee needs. The first is a simple muscle release in her calves. The second is the big hip surgery to restructure her muscles, bones, and hip sockets. The third is the scary spine surgery to correct scoliosis and prevent further distortion of her rib cage. 

Yesterday we had some X-rays done to get the inside info. 

This is Aimee's pelvis, showing the left hip out of socket and the abnormal shape of her bones (they shouldn't be straight, but should angle into the socket). This surgery we can't wait on any longer. She is finally old enough that doing it now should be permanent. Waiting any longer will allow her to be completely out of socket and will not be fixable. 

This is a picture of her spine and the beginning of chest changes. The doctors are hoping to hold off on this major surgery for a bit longer as she is still so young. The longer we wait the less likely that she will have it done multiple times. 

We are scheduling the first two surgeries together for this November. It will mean several days inpatient, a 5 hour procedure, and 6 weeks in braces. Her first big surgery. Even when we knew it would come eventually, it is still very nerve wracking to have it upon us! 

8.12.15 Model

Aimee got to be a model last night for a local photographer. She is looking for a couple more special kids to photograph: http://youngreflectionsphotography.com/model-call/

As a sweet bonus, the photographer took a few photos of our family was she was here. An amazing gift!!