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.