10.22.15 Big Deal

This is a really, really big deal! Are you ready to read it? Get ready. 

Aimee's insurance has approved her new wheelchair and, from what we can tell, every single little peice of it! You read that right. In a couple of months, she will have a brand new, completely paid for, fully supportive wheelchair. We are incredibly thankful and thrilled. This chair will be a part of her for the next 5 or so years.

It will certainly be bittersweet to move on from her first wheels, which are a symbol to us of our loving community and of God's faithful provision. That incredible experience 4.5 years ago will forever be etched in Aimee's life story and we will never be the same. 

However, Aimee has grown. Her needs have grown. Her smile has grown (beside the point, but still true). Her discomfort and distortion have grown too. It's time to move forward to new wheels. 

10.16.15 BAER

Aimee had a sedated BAER Exam today, which is to check her hearing as sounds are received by her brain. It was a very interesting experience on many levels. 

She has had this test done numerous times. It requires about 90 minutes under anesthesia and we get immediate results discussed with the audiologist. This particular doctor took extra time with Aimee today, as she repeatedly got different results for a particular pitch. After having another doctor review it with her, they made their best interpretation of the data, which was that her hearing in the higher pitches has decreased fairly significantly. Just like every other system, it seems that Aimee's brain/hearing connections are inconsistent. 

More interesting than this was Ed and I's interactions with all of the staff, especially anesthesia and nurses. Typically we have felt like we are trying to convince them that Aimee needs extra care. Today, we had several different experiences of conversations of risk, of them making decisions based upon our opinion, of their concern about the seriousness of Aimee's needs, of their awe about her central apneas, ect. A little terrifying to have the professionals worried, but also kind of wonderful. Finally! They are acknowledging Aimee and not just brushing off our concerns. Finally, they are taking her seriously and understanding that she doesn't fit the mold. Part of this, I think, is simply how much more savvy Ed and I have become. We knew the ins and outs of everything that came up. Ed even was able to make a suggestion to her anesthesiologist that made the procedure safer for Aimee and allowed her to recover faster. They asked me to be in the PACU the whole time with Aimee as soon as the procedure was over and then to decide if we wanted to move her to the floor or go to recovery. 

At the end of it all, Aimee did really well. We got good information about her hearing changes. Most importantly, we got to bring her home! 

9.5.15 Exclamation Point

Yippee zippee! 

Ugh! No! 

My two opposing exclamations on my mind. 

I am filled with excitement after yesterday spending time ordering a new customized wheelchair for Aimee. As she has grown and become more set in her ways, her wonderful wheels have become less supportive. Her needs have changed and we are looking for a chair that will allow her to interact with her siblings and classmates. We were thrilled to spend time going over every single piece of the new chair designed for her needs. We discussed in detail with the equipment provider and the physical therapist every inch from back cushion, side wedges, rib support, and head stability to wheels, equipment storage, washability, and straps. Praying for insurance to cover this amazing new chair. Yippee! Zippee! 

My second exclamation is a sinking realization that the nighttime apneas are creeping back. Each night we are seeing more dramatic lows and they are beginning to increase in number. The o2 worked so wonderfully well... But the change seems to be slipping away. Ugh! No!!!

8.28.15 Surgery Schedule

This past week Aimee has met with her two Othopedic doctors who both discussed several surgeries that Aimee needs. The first is a simple muscle release in her calves. The second is the big hip surgery to restructure her muscles, bones, and hip sockets. The third is the scary spine surgery to correct scoliosis and prevent further distortion of her rib cage. 

Yesterday we had some X-rays done to get the inside info. 

This is Aimee's pelvis, showing the left hip out of socket and the abnormal shape of her bones (they shouldn't be straight, but should angle into the socket). This surgery we can't wait on any longer. She is finally old enough that doing it now should be permanent. Waiting any longer will allow her to be completely out of socket and will not be fixable. 

This is a picture of her spine and the beginning of chest changes. The doctors are hoping to hold off on this major surgery for a bit longer as she is still so young. The longer we wait the less likely that she will have it done multiple times. 

We are scheduling the first two surgeries together for this November. It will mean several days inpatient, a 5 hour procedure, and 6 weeks in braces. Her first big surgery. Even when we knew it would come eventually, it is still very nerve wracking to have it upon us! 

8.12.15 Model

Aimee got to be a model last night for a local photographer. She is looking for a couple more special kids to photograph: http://youngreflectionsphotography.com/model-call/

As a sweet bonus, the photographer took a few photos of our family was she was here. An amazing gift!! 

8.11.15 Hoping for Health

I'm nervous to say it aloud, but I think the solution has been found. Aimee hasn't had a bad night since she has been on oxygen. Going from getting up 6-12 times a night to merely 1 short time is changing things for me. I am thrilled for Aimee's sake, but truthfully, I am excited for my own sake also. I am finding myself with the energy and mental capacity to get my health back in order, which for me means losing weight and getting off of anti-depressants. I didn't realize that the prolonged lack of deep sleep was the root cause of my challenge. Praying for this positive change to continue for Aimee and for ME! 

8.6.15 A Plateau

I have delayed this post for a couple of weeks. Writing feelings and future plans down is tricky. 

First off, Aimee is doing really well. We conceded to putting her on oxygen at night through her bipap about 2 weeks ago. Her Pulmonologists were unsure if this would cause her to have more central apneas, but in the end decided that it was a necessary step. I was not optimistic about this change, but was I ever wrong! Since starting her on continuous low oxygen she has gone from an average of 6 major desat episodes per night to 1-2 minor episodes. It is remarkable! We are incredibly thankful to have found a solution.

So, that being said, her carbon dioxide levels are high and she has begun to take long pauses in breathing while she is awake. At this point, she is in a stable place and we, of course, hope that this will continue. However, not knowing how long the plateau will be, the Pulmonologist has asked us to start the future conversation. He says that we have hit the end of the options with our current set up. If she continues to progress and we start to see prolonged central apneas during awake hours, the next intervention will be a trach with a vent. He says that now is the time, while Aimee is stable, to consider how far we will go and at what point we will stop adding interventions. 

It is an ugly conversation to face. I had always assumed we would do everything possible to keep Aimee with us. Now that we are further on the journey, I can see that may not be the most loving choice. Fighting and holding on tight is right and good, but there may be a line crossed in the future when loving her will be saying "enough". 

For now, we savor the day.