6.23.16 A Little Love


Here to share a little love with you from Aimee.

This week she made it through a few clinic appointments. First, she was approved by the PASS clinic to go under anesthesia for her upcoming surgery in a few weeks. Her nutrition was reviewed and she met her weight gain goal exactly (6 grams on average per day). AND...more or less excitingly, depending on your perspective, her GI doctor came up with plans A, B, C, and D for Aimee the enima enigma. We are combining multiple types of enimas together in hopes of avoiding a surgical option, which may not even be successful in Aimee's case. If these plans don't work, the next step is adding a daily irrigation routine. Something new just in time. We were getting so bored. ;)

Much love to all our wonderful family and friends who follow Aimee.

6.9.16 The Game

These two cuties played a little game together for about 10 minutes last night. It was so precious to see. We put a ball under Aimee's hand and told her to hold on tight. She would lift her hand and it rolled down her leg and across the floor. Caleb would laugh delightedly as he chased the ball and brought it back. Aimee was bright eyed seeing him come back. She would grin as we put the ball back again under her hand. A special moment of two kids finding a way to play together. 

We met with Aimee's Neurodevelopmental doctor. It is nearly always a helpful appointment, because we can ask him any questions and he is willing to spend time responding thoughtfully. Most of our focus in this recent visit centered around growth, hormones, puberty, and looking ahead. 

We have been somewhat concerned as we think ahead to what size Aimee will be as an adult. Family history and her pattern thus far show her to be tall. We hope that her size will never prevent us from being able to care for her at home. We were imagining ourselves as we age attempting to care for Aimee at 5'11" and 180 lb. We discussed some options with him for using hormones to stunt longterm growth. 

This may sound terrible to you. It is often met with negativity from the general public, but we are honestly doing our best to consider the health of Aimee in the long run. Thankfully, Aimee's doctor encouraged us that because she is showing signs of puberty coming early that she will likely naturally cause this early growth spurt and stunt her own growth. Just to make sure, we will be tracking her bone age over this next year and decide accordingly what should be done. Any interventions through puberty will be made with deliberation on our part. We will have to consider steps that would typically horrify me... Except it is not possibly to just read books with Aimee and explain puberty, periods, appropriate touching, ect with her. We have to be unnatural and consider alterations to the norm. We will process these together and do our best to make the right decisions.

Yesterday, we met with a pediatric dentist. Aimee has varied teeth. Less than either of her brothers with some partially errupted, some worn away, and 5 loose teeth. The dentist encouraged us to continue to file and pull as we can at home. 

We have scheduled Aimee's follow up hip surgery to remove the hardware for mid July. This should be a much, much more simple procedure with only incissions to heal from. Should not require isolation, braces/casts, or 3 months of pain. :)