2.13.15 Health

Aimee has been really healthy this season. Most likely because she has been out of school since October. We also haven't been going to church due to the sick season and our big focus on fixing up our new house. We have even done our best to avoid gatherings with sick kids. This past week though, Aimee started school 2 days a week and we attended a church function. She sobbed last night and her numbers are not great this morning. She is breathing rapidly, agitated and has a mild fever. Her heart rate while sleeping is typically in the 50bpm range, not 150bpm. Her oxygen is a little low per typical too. 

Please pray:

-protection for Aimee from sickness

-wisdom for us to know what is most important in protecting Aimee and also in allowing her to share her joy

The kicker is that Aimee had a great time both at school and at church. After her first day of school she was chatting all evening and thrilled with the focused attention. At church she was smiling at everyone and again talking away. 

Jesus, help us. 

2.12.15 Tubie Love

Happy Tube Feeding Awareness! 

Caleb helped me make Aimee's blend this afternoon. Her measurements may have been a tad bit off, but the extra dose of love more than makes up for it!

1.19.15 Seahawk Day

Caleb capturing everyday life.

Kids ready to cheer pregame.

Aimee and I celebrating in style.

1.18.15 Knee Deep

Slogging through the mess of paperwork, meetings, doctors notes, and care plans to get Aimee transferred to her new school district. I don't like it. The district actually is great. The people are all friendly and welcoming to Aimee. I just really dislike to continual feeling of conflict that being an advocate requires. Yes, she'll need a one-on-one aid. No, I refuse to put her on a bus without one. Yes, I'll train them. Yes, I'll make a care plan for each possibility and get doctor signatures for every scenario. No, that won't be adequate. No, I don't feel comfortable having that therapist work with her. No, I won't leave her until I feel comfortable. 

It feels icky. There are many moments during this process when I have reconsidered home school. Unfortunately, nearly every time has been for my own selfish desire to run away from all these particulars. But, this 

face...  

...so I continue. 

In an unfortunate turn, this last few days, Aimee has recessed with her sleep oxygen desats. We have had several nerve wracking lows that her new machine is not preventing. We don't understand why, but for now we are rousing her or doing some chest compressions to get her breathing. Maybe it is time to see what is happening in her brain with a sedated MRI. 

Aimee received her nightwear braces and has been faithfully wearing them. In a couple weeks we'll pick up her custom daytime braces and she'll be ready for 24/7 duty.  

Imagine these cute little kicking feet with braces. Watch out toddlers! Aimee is about to be armed and dangerous. 

Aimee is adjusting to our new home. She has had breakfast in bed many a morning with her brothers and has been out in the sunshine helping me with the sleeping garden. 

In the thick of questions, of issues, of icky, there are seeds of gratefulness for every moment with this sunshine girl. 

12.31.14 First Lost Tooth

Aimee swallowed her first tooth last night. Thankfully it was one of the little bottom ones. Such a big girl! 

12.30.14 This and That

We are rather delayed in reporting to you primarily because of our big project. We are fixing up an older manufactured home to live in for a few years on a 5 acre piece of property. We are very excited about moving our family closer to church, extended family, and the hospital. 

Aimee thoroughly enjoys the noise that fixing up a house brings. Her particular favorite is demo. 

Due to this crazy project, I have several weeks worth of Aimee news for you. 

Aimee's sick season has been rather mild, aside from a ruptured eardrum and some colds, which are still challenging.

Caleb is learning to document life. This unfocused picture is me leaning against Aimee's bed during a rough day of her sickness. 

Another sleep study is on the books. The good news is that Aimee received a brand-new BiPAP machine. It is working wonderfully and making a huge difference! It seems that this machine is picking up on her lack of breathing or shallow breathing and increasing the pressure immediately. Desats that were going into the low 60s sometimes even lower, are now just hitting the mid to low 80s before being caught and starting to go back up. 

Unfortunately, the sleep study showed that Aimee is now having central apneas. Unlike the more typical obstructive sleep apnea that she has due to her low tone, the central ones point to potential brain deterioration. For some reason her breath signal is not being sent. At this point, because her new BiPAP machine is making a big difference for her, we are holding off on doing any more sedated brain MRIs. 

We are still struggling with some insurance issues in regards to the homemade enema gravity system, as well as, some kind of bathroom chair to help her with elimination. It is overwhelming to try to figure out new routines when there is no textbook to follow.

This past year, we have noticed an increase in her muscle spasticity. Our once floppy girl is tightening up. Day to day this just makes getting her changed or dressed more difficult. A couple different meetings with ortho doctors has shown us other effects as well. 

The first appt was to check on her spine and hips. Her spine has still continued to gradually curve. Her left hip has gotten particularly worse. At this point, they are just monitoring the change and having us manage pain. 

Yesterday, we came in to see her orthopedics doctor that corrected her club feet. I was hopeful that this visit was going to be her final one with this doctor since everything has been great for a couple years. Sadly, he said that we need to start bracing her feet night and day. Her change in tone in her extremities is tightening up the Achilles' tendons, which she had cut as a baby. He is concerned with how much change there has been recently that if we don't start 24/7 bracing that her skin will breakdown as her feet begin to recurl. She didn't look thrilled at the news.

We also met with the dietitian to review her weight and her blended diet. Happy to report on this front that Aimee has grown 3 cm in height and about 5 pounds in weight since last year. The nutritionist said that they hope for 4-6 grams on average per day for her age. She averaged 4 g a day. So happy.

We are convinced that her nutrition continues to make a big difference in her health and happiness. I am excited to say that due to different sources from church and Christmas money, we are able to purchase a new blender with a higher capacity for her. Hooray for good food for Aimee. :) 

And finally, Merry Christmas to you all. May your home be filled with peace this season and your coming year brimming with hope. 

11.19.14 So This Is Love

"Love her."

This the specific direction I'm given.  When I am at a loss, desperately in prayer, wondering how to mother Aimee, these are the words I hear. Yet, I still get bogged down. What does this mean? How can I do this grand task? What big gesture should I perform? 

Then, as I go about her cares, a song comes to mind. I continually find myself singing it while I change a diaper, while I clean the suction machine, while I respond to middle of the night alarms. 

So this is love

Mmhmm mmhmm

So this is love

So this is what makes life divine.

I'm all aglow

Mmhmm mmhmm

And now I know

The key to all heaven is mine.

My heart has wings

Mmhmm mmhmm

And I can fly

I'll touch every star in the sky.

So this is the miracle 

that I've been dreaming of

So this is love.

Simple song from Cinderella, but it comes to my heart and reminds me that my divine task is to touch heaven with simple, daily care.