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.