3.30.17

6 beyond stinky blowouts in a day, including all over my favorite blanket and, yet, she still makes me smile. 

Aimee is worth it. 

And how much more our heavenly Father loves us. 

3.29.17 Rehab

Last week Aimee and I met with a new Rehabilitation Medicine doctor. Primarily these appointments are about equipment and body movement. We had originally been sent over to rehab, because we were concerned about changes in Aimee's tone. She was considered a "floppy baby" and had always had really low tone. However, her arms and lower legs seemed to be developing higher tone. In previous appointments, the rehab doctor had agreed that this was happening and tracked the changes. This new doctor disagreed. She said that Aimee still has low tone and she did not see any indication of high tone developing. Instead she has contractors in those areas. This means that due to her lack of use (not extending her arms, turning her hands, standing), her muscles and tendons are becoming shorter. This has become more and more evident, particularly with her left elbow, though both are limited now. She is not at a point where this is causing major problems. She does not try to reach for items, she has not had major skin breakdown there, and we are able to get clothes on and bath her with only a bit of challenge. However, when it does become a probelm, it would require a lengthening surgery, similar to what she had done on her left calf 15 months ago. In the hopes of avoiding additional surgery with subsequent bracing, we are going to attempt to have elbow splints made for Aimee to wear at night. The hope is to maintain the current range of motion and avoid the surgery altogether. 

The only other significant news items from this appointment were a recommendation to see a physical therapist outside of school and to potentially have a custom seat back made for her wheelchair to help with her side support issues. This will wait until we meet again with the pulmonary/orthopedic surgeon combo and hear an updated spine surgery timeline. 

At home, our current focus is on sleep. Aimee has been staying up in the evenings and waking up for several hours during the night to grind her teeth, cry, or just play. We have attempted to increase melatonin again and it is working for the moment, which is evidenced by the fact that she is energetic during the day and desatting throughout the night again. It is a hard game to play. Either she doesn't get good sleep and thus doesn't desat much or she does get deep sleep and sets monitors off. Considering other options going forward since it seems that increases in melatonin are only effective for a few weeks. 

And! I saved the sweet bit for last. This morning, Aimee looked at my face for a full 20 seconds! I could probably count on one hand how many times this has happened. She does look at Ed's face pretty often though, courtesy of his beard framed face. :) Hope springs eternal. 

3.19.17 Shining Bright

Ain't it a glorious day

Right as a mornin' in May

I feel like I could fly

Have you ever seen the grass so green

Or a bluer sky

Oh, it's a jolly holiday with Aimee

Aimee makes your heart so light

When the day is gray and ordinary

Aimee makes the sun shine bright

Oh, happiness is bloomin' all around her

The daffodils are smilin' at the dove

When Aimee holds your hand, you feel so grand

Your heart starts beatin' like a big brass band

It's a jolly holiday with Aimee

No wonder that it's Aimee that we love

(Lyrics from Disney's Mary Poppins "Jolly Holiday")

This was Aimee's reaction when I told her she was growing into a young lady. She makes the sun shine bright in my heart.  

2.28.17 Eight

Yes, Aimee is now 8.

Our thought of a relaxed Aimee-style day didn't happen. She was pretty out of it and needed oxygen most of the day. It was easy to fall into the sadness of the day, of what the day wasn't. Ed and I felt pretty low all day, though wanting to celebrate Aimee. Thankfully, at the end of the day, she was more alert. We all piled into her bed to sing songs. This turned into a dance party in her room. The boys were full of energetic, wild dance moves and our laughter was the right way to end the day. 

Snow accumulated, even more than the morning Aimee was born. Bright and beautiful, just like she always is. 

Caleb anxiously awaited celebrating Aimee turning 8. 

As on every birthday, and nearly every other day, we kissed and snuggled our girl. 

Today, belatedly, the boys and I made decorations for Aimee to enjoy over her couch. Even though she has cried through a good portion of this day, even though it is easy to feel laid low, Aimee is worth celebrating. She is worth our best dance moves and our biggest laughter on her 8th birthday. 

We love you, Aimee. Happy birthday!

2.23.17 Conflict Weary

I have started writing this post at least 4 times so far. (Note: I just had to change that number from 3) Here is hoping that I finish the job this time.

This past couple of weeks feels like a reverse version of a Sound of Music song. The following are the lyrics for "These are a few of my least favorite things": 

-IEP Meetings

-Car accidents

-Recorded Insurance conversations

-Disapproval from doctors

-Non-sleeping nights

-Puking children

-Power outages

-Poop explosions

-Ed continually in back pain

Okay, so they are working lyrics at this point.  

Conflict is really challenging and exhausting for me. To counteract this list of what has me feeling weighted down, the following are a few things I'm thankful for from this past 2 weeks:

-a working generator

-Ed's county job that he diligently performs

-Aimee's recovery from sickness

-Caleb's detailed thoughts on drawing plans, getting materials, and building...chicken catching nets. :)

-the glimpses of approaching springtime

-delicious cups of chai tea

-my soil sprout project

-Caleb, who loves to help

-Aimee, who loves to laugh

-Ed, who loves to build 😉

-Boys, who want to learn everything

-Elliot, who is full of adventure

-3 kids, who all love Mary Poppins

-Brothers, who are the best of friends

-New outfits that bring me confidence for IEP and doctor conflicts

There is SO much to be grateful for everyday. It's actually hard to stop. 

So, highlights. Aimee made it back to school this last week. As usual, she recovered molasses slow. Unusually, she required more respiratory support for longer than she has ever needed for a cold. Her numbers during sickness are what led to a conflict with her Sleep Pulmonologist for not having her in the hospital. I agreed to in the future at least call. Bringing her in has its own set of challenges, including an aid car. Thankfully, she has recovered now and we hope for no more sickness this year. 

Unfortunately, on the road between this appointment at Overlake Hospital and getting bloodwork at Bellevue Children's clinic, a car pulled out of a parking lot without looking first and we had an accident. Aimee and I are being seen by chiropractic care. Of course, this also has involved a lot of dealings with different insurance companies as we work to be sure that the other company accepted responsibility, to get our van fixed, to get a loaner wheelchair van, and to get care. 

During that return week to school, we met with Washington Sensory Disability Services Deaf-Blind Specialist and TVI. We moved school districts over 2 years ago now and have yet to get the school to evaluate for vision services. It still feels like a never ending battle, but I am hopeful that getting these outside specialists involved will put extra weight behind the requests.

Tuesday, I survived the battle of the IEP and only almost cried in the meeting 1 time. Part of why this process of the IEP is so difficult is because Aimee is making little progress and we are forced to face it. I tried to explain this to the SLP who has written a goal for Aimee to "choose and intiate a cause and effect game". That is nice. I would love it for Aimee to be able to "choose and initiate"... But we have to break this down further. He has had this same goal for 3 IEPs running. She has made 0 progress. There are many things I could yell out about this, but I will say that I finally stood up to him this time and am looking out for a new goal by tomorrow. 

Here is to a cup of tea, a garden plan, and a week without conflict. Cheers! 

2.5.17 Improving

It's been a long week. Aimee is still sick, though improving. She is getting more energy and she is smiling. We have needed more respiratory support than in the past though. Higher oxygen levels and less time that she can handle having just oxygen breaks off of bipap. She also needed more inhaler treatments and more cough assist. She had more difficulty with shallow, rapid breathing and a much higher heart rate than previous colds. Her lungs must be more compressed, more effected. 

As she improves this week, my hope is to move toward a regular feeding schedule, to see less mucous production/reduce suction requirements, and to use less respiratory support. 

This morning I caught this sweet moment when Caleb and Elliot snuggled into Aimee's bed while I was doing her morning cares.

All 3 laughing together. It was a rare and priceless moment. 

1.28.17

Please say a prayer for Aimee. She has caught another sickness it seems. She is feverish and breathing very shallow and rapid. Her heartrate is quite high, even on bipap. Praying that she is able to get rest and that breathing treatments become more successful than they have been thus far.