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. 

1.19.17 It's Looming

Here they come looming ahead, the dread IEP and the annual DDA assessment. 

So I thought. So I still feel about the dread IEP. However, as of 11am this morning, I have faced down the annual DDA assessment. This was done in our home by the same evaluator as last year. It went so well! The assessment determines how many hours of personal care Aimee will receive per month in the coming year, as well as, how many waiver respite hours she will receive. The whole process was very smooth this time. Aimee received the same number of care hours and her waiver respite hours increased by 30%! So grateful!

In preperation for that dread IEP, we received the most recent therapy updates. It was ugly. On this progress report there was not a single positive word. Her 3rd IEP in this district is coming and there is not a goal written down that Aimee has made progress towards or realistically ever could. Most of the goals she really hasn't even met what was written as her baseline. "She has not made any significant progress on this goal" multiplied over and over. "Downgrade goal due to student's abilities" "Student at baseline". I am vacillating between a desire to tear up the idea of goals and frustration that there is not a single current therapist that believes in her. Wether from lack of experience with more severely disabled kids (seems likely) or from lack of interest, it does not appear that effort is being made. Is it really worth it all to send Aimee to school? It can't be. Could it be worth all of the drama, continual paperwork, blasé therapy, risks. No, it really can't be. Except, Aimee is worth it all and she enjoys school. So, IEP, I am preparing my battle face for you.

We've lived through a flu and had a few other appointments for Aimee since my last post. The only item of note was with her dentist. She had local anesthesia to have a tooth pulled and they are trying to determine if they need to surgically remove more under general anesthesia. We were also able to  determine the cause of the intermittent bleeding in Aimee's mouth. It appears that due to her significant underbite and aggressive grinding, she is causing the bleeding herself by grating the lower teeth on the upper gumlime. Yugh. Don't do that Aimee.

1.3.17 Simply Hope

Caleb, who turned 5 a few weeks ago, is very interested, excited, and curious about God. Last night, as we were reading about Jesus' death, Caleb tearfully said, "I don't want Jesus to die. I like him." A few days ago, he learned about something that was God-made. He exclaimed/prayed, "God, I would like to send you a card! With a heart! And send it with the mail man." Throughout our conversations, his simple faith has been a beautiful reminder to my soul to actively hope. 

As a part of these discussions, he frequently wonders about Aimee and her future. He wonders about practicalities, like if he will "eat out of a bag" when he is 7 and if Aimee will be able to talk when she is 8. He prays for her often that she will be able to walk and talk and sing. We have discussed many times that in heaven we will all be whole, including Aimee. That Jesus is making a place for us where there is no pain, no unkindness, no tears. He is very excited to go there. And when Aimee goes to heaven, in Caleb's enthusiastic words, "She'll know how to cook!" 

Can't wait to sit down with Aimee and Jesus to taste her first meal in that perfect place. So thankful for the childlike reminders to hold tight to that hope.