4.28.15 School Bus

Aimee rode the bus home from school for the first time today. This is huge for me. One, because I have been terrified to put her on the bus. Two, because it means I won't have to wake up the little ones in order to pack everyone up and take Aimee to school and then again two hours later to pick her up. We were able to get an aid trained to be with her both ways so that she is safe. 

Aimee didn't have the best day at school. She had a panic attack and I had to come to calm her down. However, she was brave (and I was brave) and she rode the bus home. She loved the bouncy ride! 

4.20.15

New equipment was delivered today. As a pleasant surprise and added bonus, we were told that the lift can also be used as a sort of swing! Our primary goal with the lift at this point was to maybe get some date nights using caregivers who wouldn't normally be able to move Aimee. :) We will probably get a lot of use out of it as a swing though! Caleb tested it out for Aimee. He approves. 

The commode/rolling bath chair was delivered as well. This will be used every day and I am so relieved to have it in hand. Though Aimee doesn't seem to sure. 

Aimee was scheduled for her big tests on May 5th. Thankful to get such quick scheduling. Praying for clear answers. 

4.18.15 Happy Dancing

We got wonderful news yesterday. Aimee's insurance company approved both pieces of requested equipment and they will be delivered on Monday afternoon. Amazing!! We were told to expect the lift to be covered, but that we would have to fight to get the new bath chair/commode. Thankfully they quickly responded with an approval. 

Aimee also got to meet her sweet little cousin Oliver who was born this week. She likes holding babies. :) 

4.17.15 Education

Yesterday was an education as I learned more about heart, lung, brain connection. Aimee and I met with her Pulmonolgist and I asked "what does that mean?" a dozen times. It seems like Aimee has wonderfully functioning organs, but her brain either has some anomaly developing around her brain stem or more wiring issues. It is time to do some testing. First they will ensure that the increase in issues have not caused damage to her heart yet via an angiogram and to do some bloodwork to see if her carbon dioxide levels are still too high. Most importantly, we are scheduling a sedated brain MRI to get a picture of what is happening around her brain stem. 

Aimee and I are overwhelmed, but I am thankful to be more educated and to have a doctor who listens closely and answers clearly. Praying we get clear answers that the doctors can interpret. 

4.10.15 Snuggle Bugs

4.8.15 Forget Tomorrow

It's so easy to worry about tomorrow. When I shift Aimee in my arms so that she is laying across my chest like a small baby, her legs dangling unsupported, I know one of these times will be the last time. How simple it is to leap from this little thought to a dozen related "how will I" unknowns. Tomorrow has worries. 

Forget tomorrow. Today has enough worries of its own. The late night stillness is my special time of day. I sit in bed absentmindedly watching Aimee's monitor beat along with her heart. Hoping for a good night with few alarms. Knowing that today is a good day because she is here breathing, because today I saw her light up with a bright smile when her daddy lay down next to her, because today she laughed when her brother threw a fit, because today I pushed her out to get the mail with a brother on each side grasping onto her chair. Today is a good day. I'll let tomorrow be. 

Update:

Aimee made it back to school last week finally! She was thrilled to be back and has been really talkative on the school days. 

We visited with the sleep pulmonologist this past week. We were finally able to completely read over and digest Aimee's most recent sleep study. It was a little frightening to me. She is having a lot of central apneas now, whereas before it was all obstructive apneas. Now she is having both. The bipap is resolving most of the obstructive, but none of the central. The doctor considered putting her on oxygen during the night, but Ed and I feel like this won't be helpful. If she isn't breathing, or is only having periodic breaths, extra oxygen won't help. The other question is if this is a symptom of changes in her brain. Should we do another sedated brain MRI? Her sleep pulmonologist is consulting with her Neurodevelopmental doctor and her main pulmonologist to decide on the next step.