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.