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. :) 

5.26.16 Ortho Updates

Recent appointments have been going well for Aimee. She is remaining healthy and not having any signs of decline. This week's appointment was with her orthopedic surgeon. They took a few pictures:

The top, ridiculously unnecessary picture (in my opinion), is of Aimee in a sitting position with Ed and I holding her up by her arms. The second is Aimee laying flat with an x-ray tech and the doctor pulling her apart in what is called a traction x-ray. The last one is of her hips. 

So, there is good news. Her hips have completely healed from surgery. It is time to look towards scheduling the follow up surgery to remove the hardware, which will not require any bracing or intense recovery. 

Other good news, with traction to see how straight they can get her spine, they measure a 40 degree curve, which has not significantly progressed over the past 6 months. We will be meeting this fall in a combined appointment with a new pulmonologist and the orthopedic surgeon and getting new spinal x-rays. They will discuss together how Aimee's lungs are doing in her body structure and at what point we would need intervention. As you can see from the pictures and, especially, if you place your hands around Aimee you would feel the distortion of her rib cage because of her spine. You can also see the pelvis tip, though that isn't affecting her lungs. ;) 

While REALLY thankful that there is not a current need to intervene further, the mere existence of this conversation shakes me. It is a frightening surgery that is not one and done like the hips. But, I choose to not focus on that future event. Today is bright with good news.

5.18.16 I Wouldn't Trade You

Dear Aimee,

Being your Momma has not gone to script. The dreams I dreamt of us, the life I planned, may never come to be. Yet, never, ever would I trade my Aimee girl. 

I would never trade you for a mini chef or gardener protegé. I would never trade you for a gap model or a math genius. I would never trade your starlit eyes for ones that could read books, or take photographs, or spot treasure. I would never trade your giant, mixed tooth smile for one with an even grin. I would never trade your elegant fingers for ones that play concertos or paint like monet. I would never trade your soft feet for ones that could run a marathon or tap dance. I would never trade your drooling lips for ones that could lip sync or tell good jokes. I would never trade your twisting torso or dancing hips in for perfect posture or an elegant stance. 

No matter the offer, I would never trade you, dear. Who you are brings me delight. There are many things that you and I will never get to do together, but looking into your face, I am grateful that I get to love you as you are to forever.

♥️ Momma

5.14.16 Steady On

Thanks for standing by. We threatened Aimee a few times with a hospital trip, so she finally started to give us a few clues to the cause of her distress. We added benadryl and doubled her reflux medication. She seems to be evening back out to her typical behavior. I believe her seasonal allergies were causing her to have irritation and excess saliva, which caused extra swallowing, forcing extra air in her stomach, which combined with crying stress caused slowing digestion, which in turn caused acid coming up to her esophagus, causing heartburn, and backing up her bowels, and so on. 

Praying that the peace continues. 

5.9.16 A Thousand Tears

This is day 2 of a thousand tears. Yesterday, Aimee woke up crying about 7am and, aside from two short exhausted naps, cried until 9:30pm.

She has never cried a whole day before. Usually if she isn't feeling good, she sleeps. Very commonly she will cry for 2 hours in the evenings before bed. Occasionally a few more hours, but never a whole day. With prayers and I'm sure out of exhaustion, she slept last night until 5:30 this morning. And the tears begin again. 

I don't know what is going on in her. :( Aside from an understandably high heartrate, she has no fever, and oxygen levels are good enough considering she is crying. Starting to worry and considering an ER trip to have a thorough   examination. Something isn't right for my calm, happy girl to be so miserable. 

5.5.16 Time Bomb

Visit us on a normal day and you will witness lots of Aimee smiles, a few tears, some struggles, and so many routines. The moments that make up life. 

The other days, Aimee and I sit in a doctors' office. We spend many moments there together waiting, holding hands, seeing the same specialists over and over.

Aimee is doing really well right now, yet she is treated as a time bomb. The kind doctors are so happy to hear she is doing well. They are pleasantly surprised at how clear her chest sounds are. They are waiting for changes. It is rarely an "if", but rather a "when". "When the plateau ends" "when she has more pneumonias" "when it worsens" "if you want to continue considering quality of life". 

I really am thankful for good doctors, doctors who make us face real facts, but also I want to slap them a tiny bit. Reality says that life ends, that bodies decay, that Aimee is on a path that will continue down. The voice of these doctors are the sound of that ticking time bomb in my ear. How grateful I am that most days that sound is blocked out by life! 

In positive doctor notes, Aimee had a great sick season, probably due to her spending nearly 6 months isolated. We have diligently kept up with her central apnea situation, which her pulmonologist says is probably keeping her from hypertension. We just did an echocardiogram Tuesday to make sure. We have some days that require more interventions with cathetars, more enimas, more nightime alarms, more medications. Overall though, we are pleased with this plateau and will enjoy the even ground ahead for every step that exists.