1.20.12

Aimee sitting in the tumble form chair she received from her friend Cami on Wednesday! :)

Today was my very first day alone with two sweetheart babies. I am having so much fun! We had no commitments for the day and so we did laundry and dishes, each one of us exercised, and we all sat in front of the fire playing and singing songs together.

Playing together this afternoon

As you probably know from the news or from experiencing it yourself, this past week has been filled with beautiful, snowy days. We ventured out a few times during the week to make it to a few appointments.

On Monday, I took Caleb into Skagit Valley Hospital for his newborn hearing screening. He passed both ears, but so did Aimee at that age. It wasn't until she was around 18 months that we realized she was hearing impaired. We feel it is important to keep an eye on his hearing too, since we are not sure what symptoms of Aimee's are related to her disability.

On Tuesday, Nana Annette came with us to Seattle children's for an appointment with Neurodevelopmental. We always look forward to meeting with this department as the doctor is willing to answer any questions about any area of need or concern we may have. We talked about diapers and what happens when Aimee outgrows regular sizes, but is still too small for adult diapers. We will be needing to make adjustments here soon. Her bladder capacity is outgrowing our current system.
We also received a referral to the durable medical equipment department to look into purchasing a specialized car seat. She hasn't outgrown hers yet, but we are on the biggest setting and it takes so long to get equipment!
I asked the doctor what we need to be aware of for the coming 5-10 years. We feel like we are continually watching every system of her body for anything unusual. He feels like we have probably encountered most areas of problem that we will have, except breathing problems, hip displacement, and scoliosis. Just to be safe, he sent us over to radiology after our appointment for a quick pelvic x-ray to check on her hips. We'll get the results on that next week(ish).

Wednesday, we stayed home and spent a relaxing day by the fire with Nana and Papa, who drove up through the snow to help me with Aimee for the day. Both of Aimee's therapists had to cancel their appointments with us due to the weather.

Thursday, Ed took the day off of work to drive with us down to Bellevue Children's to meet with the Pulmonary Sleep Clinic. Aimee has been using the BiPap machine every night and keeping it on for 12 hours about 5 nights a week. However, we have not noticed a significant improvement in her energy levels. The doctor had a nurse go over chest therapy with us again. She is obviously expecting Aimee to have pneumonias begin at some point due to her low muscle tone. She even considered sending us to the chest clinic right now before they begin. Thankfully, we're going to hold off on that for now.
Last time we met with her, she had blood work drawn to check on the Carbon Dioxide levels in Aimee's blood. We had that test redone yesterday to see if the machine has made any difference towards lowering it. We'll find out the results next week.
The Pulmonary doctor set up a Sleep Study appointment for next Tuesday night. It will be similar to what we did last time, except we will bring the BiPap with us and she will wear it during the test. This will help them determine what the pressure levels need to be at for her and hopefully give us some actual benefit to her using the machine.
We were hoping to get some resolution in this appointment for issues we have been having with the machine, such as sizing and the continual red mark on Aimee's nose. However, it doesn't sound like they have many good options, at least for the mark. One of Aimee's therapists recommended using second skin, which is used for burns to protect skin. I am hoping to try this out soon, even though it is not a recommended item by the home care company.

Phew! Back to the grind of appointments it seems. Next week will be another busy one. I'll keep you posted, but for now, here is a video of Caleb playing Aimee's button for her.