5.20.15 All Worth It

I'd like to complain. 

That isn't what this blog is for? 

Oh. 

I'll attempt to tell you the facts. 

Yesterday Aimee met with her Neurodevelopmental specialist. As we had already surmised, her heart is doing well and her brain is unchanged. Meaning the increase in issues are all due to wiring problems. Unfixable and not understood. 

Aimee will be having a renal ultrasound and then we will meet with urology to learn urinary catheters. We are currently spending an hour each evening doing gravity enimas by rectal catheter. Both needs can be traced back to that ol' wiring problem. 

Last week we had the back up rate on Aimee's bipap increased to 18 breathes per minute, meaning if she isn't breathing on her own at that rate, the bipap will turn into a basic vent and use pressure to make her breath. It had been the worst week for sleep. She doesn't appreciate being breathed for and so is refusing to breath altogether. Nights were already challenging. This made them impossible. She was up, turning gray, more than a dozen times a night (twice the typical number). We would spend 10 minutes getting her oxygen back up into the 80's. 

It might be too soon to say, but the last two nights, she seems to have accepted the change finally. We are praying that this change will mean avoiding oxygen for a little bit longer. Oh, and hoping for sleep. 

The other big change discussed in this appointment was regarding school. Due to her increased dependence on the bipap and at times needing it during the day, we are being encouraged to push for home education. Having just finally settled into having Aimee ride the bus and getting a short break from caring for her on 2 mornings a week, we are struggling with this decision. What is best for Aimee is highest, but what keeps us all afloat and sane ranks pretty high too. 

-Aimee and I took a break this weekend and watched a girlie movie together. Her sweetness is beyond words. She is worth it all.-

5.12.15 Disappointing Good News

The Brain MRI test results show "No focal brainstem or focal brain parenchymal abnormality to explain the patient's worsening central apnea."

Although this is good news that there is nothing to fix , it is bad news... There is nothing to fix. I won't actually talk with a doctor about it until next Tuesday, but I am quite certain they will say it is another "wiring issue" that they don't yet understand. Jesus help me. 

Aimee is doing so well in some areas. She is more aware, responsive, and awake then ever. Yet, she is having more issues than ever with everything from cues to breath, to pee, to regulate temp, to have BM, to regulate blood pressure, and to relax muscles. 

One day, one issue at a time. 

There is this pretty sunshine to get us through though.

I love Aimee.

5.8.15

A few more pictures from Aimee's big day. She was in such a great mood the whole day. She laughed and snuggled in during the echocardiogram. It was pretty cozy. They set up a movie, snuggled her with blankets and pillows, and turned down the lights. It lasted about a half an hour. Although it was interesting, I really didn't understand much of what was on the screen. 

Here she is all ready to breath the strawberry flavored air... And she is laughing. 

Daddy was with us the whole day and he got Aimee to wake up. She really responds to his voice.

It was the strangest anesthesia experience ever. After waking up in recovery, Aimee was extra energetic. She was waving her arms and crossing her legs in ways we rarely see. It was almost like she had woke up from the most refreshing nap ever and then had some kind of stimulant. 

Now we wait for the full results. Wishing for a correctable issue to be found, though with Aimee it is nearly always a mystery to the doctors. 

5.5.15

She made it safely though her day of testing. We are waiting for her to wake up and recover. 

5.4.15 Testing Day

Tomorrow is a big day for us. Aimee will be going in to have testing done on her heart and brain, particularly looking for heart damage caused by her apneas and at her brain stem for changes/new anomalies. Please pray for clear results and safety under anesthesia. 

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.