DeVoe Family: 2014

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!

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.

11.15.14

24 hours with no mystery bleeding! Thank you for praying!

11.8.14 Clinical Update

Aimee has met with numerous doctors since I last detailed an appointment, but there are two clinics with significant findings.

As I have mentioned before, Aimee has been having significant desaturation episodes during sleep which her bipap machine has not been relieving. The doctors have attempted different pressure settings and an updated mask. Next we are going to try a new piece of equipment that is more sensitive. Thankfully this has just been approved through insurance. As soon as we get that adjusted, we will take her in for another sleep study. Her Pulmonologist team are all concerned as these episodes were not happening during prior studies. We may need to consider another sedated MRI of Aimee's brain to determine if there are signs of degeneration.

Another continued challenge has been with bowel movements and the GI clinic. After many attempts at typical laxatives, enimas, and stimulants, we are finding that Aimee's brain is just not signaling her body that it needs to be emptied. Her muscle tone being low also makes it very difficult to maximize any urges that she may have anyways. We are currently implenting a new regimen that will take about an hour each evening. It includes catheters, homemade gravity enimas, and time on the toilet. It is that last bit that is the tricky business. Due to added volume with the enima and the more ideal position of the toilet, we have to find a way to have her sit on the toilet for 30-40 minutes each day. Honestly, this is just crazy, but, Ed and I are going to attempt making a contraption to help hold her. :/

I am pleased to report that Aimee has been incredibly healthy otherwise, aside from numerous UTIs. Her immune system is greatly improved this season thus far. Such a blessing!

Plus, she has been getting lots of snuggle time lately! Sure love these dears.

11.13.14

A day of clean up and scary looking spills.

Aimee has been a little sick, but today she has really frightened me by choking on blood multiple times, as well as, having blood in her stomach contents and covering her sweet face. All her vitals are decent and I am hopeful that she is just having nose bleeds. Poor girlie! Please pray for the bleeding to stop.

10.17.14 Moving On

Tonight I am writing my last post to you from this home.

8 years ago, Ed and I bought a questionable house on Bartl Street. We poured ourselves into it, learning together as we planned, plotted, and eventually completed our home.


2006: The house we found; 2014: The home we built.

Since that day, we have brought 3 new lives into our family. Each one born here in this redeemed house.

Now, we are preparing to close the door on this chapter with some sadness. It was here that we learned how to love.

Thankfully, we are taking all these lessons, all this love, and all these sweet little lives with us. We are hopeful and looking forward to a bright future in a new home.

Farewell Bartl Street!

PS. Much love and gratitude to Erin Cox Photography for catching photos of us in our native environment. They will be cherished!

8.28.14 Mostly Adjusted

Sometimes there is an unexpected land mine. Something you wouldn't expect to hurt, but you step forward and it aches like a amputated limb, longing for what is not there.

Today's land mine was a letter from the principal of the Clearlake elementary school. Aimee and I came home from a drive to Seattle laden with a heavy bag of meds. We were having a lovely drive. I was enjoying listening to a book through Audible. Aimee was peaceful. Then we stopped for the mail and there was this letter.

It is a simple sheet. One side is a list of school supplies and the other instructions for Aimee settling in to the kindergarten class. Somehow lines were crossed and Aimee is expected to walk across the street next week to join the other cute, nervously excited 5 year olds.

It shouldn't bug me. If I turn over the paper and just see the supply list, I feel fine. The letter side, with Aimee's name, makes me dizzy.

There are two worlds. The one where Aimee doesn't belong and the one where she might have belonged. Yes, I know, those are the same world. As long as I watch those sweet babies walking to kindergarten outside my window, I can smile at their joyous chatter. It is when I "see" Aimee there walking beside them... Stop I can't think about it any more. The world hasn't ended. I know Aimee is beautiful as she is. But understand, it isn't all well. Sometimes, it is crushing. Sometimes, there is a crack running through my heart. Sometimes, there is a land mine and what isn't there hurts.

8.7.14 What Tomorrow Will Remember

I am here, next to Aimee.

She has had a sad morning. Probably hip troubles. Some adjustment, some pain medication, and a snuggle in mommy and daddy's bed seems to have calmed her. I am holding her soft hand with her long, sturdy nails. Admiring her smooth skin. Watching her head bob around, dancing to some unheard beat. Her eyes are glancing this way and that. She sighs.

I cannot convey to you, or to future me, all the details of this moment. I can take a picture. I can find words to describe. But how can I capture the feeling of my cheek against hers. The smell of her. The sound of her breath. The pattern of movement. I am desperate to catch this moment even more than with the boys, though I feel it with them too. Wishing I could always remember the feel of a round baby nuzzling me or a sticky, small hand leading me.

In the end, all I can do is be present. I can laugh and sing. I can savor. I can enjoy this day, not worrying what tomorrow will remember. Not anxious of what obstacles lie ahead.

Today is beautiful.

8.2.14 Proud Brother

7.17.14 An Answer

This week we visited the Neurodevelopmental Clinic. It is a place to ask all those questions that fall through the cracks of the other specialties. Kind of like her all-around doctor at the hospital.

This visit her doctor helped us with a social worker connection, updated equipment prescriptions, ordering blood draws for a carbon dioxide and vitamin D check, and one answer. We have typically assumed that Aimee's sobbing episodes are due to her digestive troubles that currently we are working to resolve. Yet, even with that relief, she is still having these nights where she sobs until we finally give in and draw pain meds. It is stressful not knowing what is causing her pain. Trying to guess what part of her body it is based. The doctor reviewed all her recent x-rays from different ER visits and provided us the answer. Her left hip is dislocated. This is not surprising because of her lack of hip sockets. Quite typical in kids that are non-weight bearing. However, knowing what is causing her episodes gives us a few tools. One, we can move her hip back into place. Two, we can massage the area. Three, we won't wait on pain meds. It isn't just her being emotional. She really is in pain.

Thankful for an answer.

7.8.14 Problem Solving

This last two weeks we have been following up with both the GI clinic Motility Specialist and the Pulmonary Sleep Clinic.

Following her May hospitalization for bowel issues, we set up a plan of action with the Motility Specialist. We have exhausted the natural options and are finally admitting that what works for a typical body is not sufficient for a low tone one. It will probably be a long trial and error road, but it is a relief to have some options that will hopefully make Aimee's life less uncomfortable and ours less messy!

I talked with the Sleep Pulmonologist who said that the night of Aimee's sleep study she had no desats. She stayed above 92%. She did need an increase on her bipap machine pressures. This was frustrating. I went with my instincts and asked to be set up with an oximeter at home to measure oxygen during her sleep. The doctor agreed, though based off of that one night, she wasn't concerned. Homecare set us up on Wednesday last week and we have had plenty of recorded desats in the 50-70% range while on Bipap. Too many. Even one episode where she satted down to 25% as I rubbed her chest. The beeping and running back and forth across the house through the night does get a little old, but it is terrifying to think this could be happening more than we know. Thankfully we have record now and the doctor can review what happens over a several night span rather than the one sleep study. I will feel much more confident in the decision that she makes based off of this information.

6.25.14 Hug

An engineered hug still releases endorphins. Aimee and I are researching to prove this fact.

6.13.14 Kindergarten Bound

I made an error on Tuesday. Several honestly. One of them was giving Aimee a tiny taste of frosting at her graduation party. Several gagging episodes and lost meals later, we ended the night with an emergency visit from our home care company around 11pm to deliver a new suction machine (hooray!). Really hoping to get our old one fixed so that we have a back up. This is the third time we have been stranded without a machine. Not okay.

Wednesday afternoon Aimee's preschool teacher, her vision teacher, and her kindergarten teacher convened at our house for an updated IEP. Setting the required goals for Aimee is tricky. Every IEP meeting, Aimee is farther and farther behind the curve for her age. On paper, it is almost as if she is regressing. This time, her preschool teacher found a new way to evaluate her based on stages of communication abilities, rather than based on what age level of skill she has developed. We met to combine both of these evaluations together to make positive goals. Together we determined that Aimee has mastered the ability to express comfort and to express interest in other people. Our goal for this coming year is to have her master the ability to express her discomfort. She will then have completed the initial phase of communication, which is called Pre-Intentional Behavior.

We included vision goals to increase her fixating skills on both the right and left side from 10 seconds to 15 seconds, as well as, to improve her ability to track a moving object from 2 out of 5 times to 3 out of 5 times. We listed other goals, including Aimee reaching out to touch items placed in front of her and to increase her ability to hold small objects.

Aimee is paving the way for future kids in this district. They are continually saying that they wish that had known about things earlier, that if it wasn't for Aimee they would never have known. Being a smaller school district, Aimee is one of the more medically challenging kids they have experienced. It was amazing to hear the preschool teacher describe having Aimee in class as a big learning curve and then reassuring the kindergarten teacher that she will get past the nerves and soon be very comfortable with Aimee. It was reassuring to hear the kindergarten teacher insist that we include a one-on-one instructional assistant for Aimee. There will be 13 kids in the Life Skills class with 5 adult teachers/assistants.

Overall, it was a really positive transition from the 2 year old preschool class that Aimee has been in this past 3 years and on to a K-6th grade Life Skills class. We have decided to start out next year with 2 half days each week. I will go with Aimee for the first month as they learn about her and she learns about a new school.

In order to help with the adjustment period, we made an intro to Aimee booklet for her new teachers and aids. It is fun to show off Aimee's attributes and the joy that she constantly shares despite her limitations.

6.10.14 Preschool Graduate

Aimee graduated from preschool today.

Her teacher told me there was an end of the year party at school.

What a fun surprise when the boys and I came into the room

and it was a party just to celebrate Aimee.

All the kids in the class had cupcakes.

The teachers ordered Aimee a cap and gown, made her a diploma,

brought her flowers, a balloon, and a new pinwheel.Very sweet!

We are very proud of our little preschool graduate!

Ps. Take a look at Aimee holding onto her flower bouquet all by herself!

She is learning to grip objects that are just about that size (syringe plunger, fingers, tubing). :)

6.10.14 Day 5

First Lesson:
Aimee was tired for the last day of lessons. She was asleep when we came in, but as soon as she was on the table, she immediately connected and was alert. She began the first lesson with smooth rolling towards her left. When rolling to the right though, she was still stiff and disjointed in her movements. Naomi worked with her ribs, hips, and back. By the end of the lesson, rolling to the right was nearly as fluid as to the left.

Second Lesson:
Very contented from learning and centered through her whole body. She slept through the ending of the final lesson. A lot of learning for one week!

Since last week's lessons we have seen numerous improvements. She is consistently and quickly looking toward the right hand side. In a controlled situation (iPad on her right between 12-18" away with a black background and a large, slow moving red, yellow, white, or pink object), she is looking toward the movement within a couple of seconds and even tracking the objects if they are red or yellow. She is lifting her right arm straight up over her head. Her whole body is less rigid. She has not been grinding her teeth as aggressively. She is talking more often. Overall, she is more present and aware.

We LOVE seeing Aimee light up with connections through these lessons. We are hoping to do another week this coming September/October. It is beautiful to spend a whole week focused on her as a family and watch her come to life. Thank you to each of you who helped us make this past week a success!!

6.5.14 Day 3

First lesson:

Again, subdued, but attentive for the earlier lesson.

Second lesson:

Relaxed, but awake. She seems happier, more content or satisfied.

Through the day, we saw an increased range of motion through her back. Easier to move her through stretches. She raised both of her arms over her body while on her back for a longer period of time (20 seconds). She has been repeatedly talking conversationally (responding back and forth with coos) up to 12 times!

Through the night, she kept her head more centered and this morning her temperature was the same on both sides of her body. Typically a minimum of 1 degree difference, though 2 is not uncommon. More of a typical night with wakeful periods, though considering the more subdued day, not surprising.

6.6.14 Day 4

First Lesson:

High energy lesson. Worked with crossing arms to touch opposite shoulders. When Naomi moved on to work with her legs, Aimee touched her right hand to her left shoulder all by herself. 4 times! She put her hand in position on her own to push against a surface. She was holding her tongue between her teeth instead of grinding. We also saw more movement and loosening through her ribs.

Second Lesson:

Ed took pictures for the second lesson. We've been splitting all week with me taking the first and him taking the second. Here are a few shots of Aimee learning: