So now what?

In 2013, since arriving home with little G on May 19 we have made friends with the following clinics at Children's hospital:

Pediatrics

Cardiology

GI

ENT

Pulmonary

Respiratory Therapy

Speech and Language

Orthopedics

Neurosurgery

Airway Digestive

Genetics

Radiology/Digital Imaging (many times over)

General Surgery

I think that's it, but I could be wrong. Here's to meeting our insurance deductible early on!

Cardiac-wise: She's golden. Praise the Lord. To think that was the worst health challenge once upon a time, and now it's a vague memory of how it *used to be*. 

GI: Grace had a swallow study with fluoroscopy yesterday which is a fancy way of saying they added barium contrast to her food and took x-ray video while she swallowed. We learned her food always stops at the point of her narrowing and then slowly, like sludge through an hourglass, passes through and then ever so slowly goes down into her stomach. The motility and functioning of her esophagus is minimal, but it is functioning and we are praying God will heal it completely and that the nerves will fire up in her lower esophagus so that she can eat more comfortably without backing up. When her food backs up in her esophagus it's uncomfortable for her and it lasts awhile because her muscles don't know to squeeze it down. The nerves were damaged when she had her repair in China, even though the repair was done excellently according to the doctor here. It's inevitable that damage to nerves is done. Nothing is impossible, this I know, so I'm watching eagerly for a miracle and for healing. As she matures and learns that everything needs to be chewed well it will help tremendously. For now, she's eager to shovel it in, which leads to problems, so we continue to monitor her closely while she eats.

ENT: She's in good shape ENT-wise. We hardly notice a noisy trachea and we hope, as the doctors do, that as she grows it will improve.

Pulmonary/Respiratory: To date this is the longest she has gone without any kind of lung infection in her entire life. She has been healthy, only a minor cold or two and I am praising God for this. The longer she goes without any lung complication the better chance her lungs have to regenerate and heal. Please pray that as winter and flu season hit she would remain healthy. Hopefully once this season is over we can wean her off of one of her inhalers. That is the goal. 

Speech: We have a referral to have a speech/language evaluation and will do that in the new year. She's coming along with more and more sounds and words and it's hard to say how age appropriate her progress is since she's only been in the country 7 months, but we are confident she comprehends more than she verbalizes. Lots more, but she's coming along. 

Ortho: We are seeing the orthopedic again in spring. Hopefully her kyphosis will continue to improve. I don't really notice it anymore. Her scoliosis seems the same and as long as it doesn't get worse as she grows we will not expect sugery. 

Neurosurg: We left the neurosurgeon feeling bummed about the possibility of a detethering surgery for her possibly tethered spinal cord. I have sought out the opinion of each of her other specialists and am getting a few other opinions from other neurologists and neurosurgeons. Everyone I have talked to since our appointment has agreed with our plan to wait and see. She still has no symptoms of a tethered cord; so for now, we pray, we watch for symptoms, and we wait. The recovery for this particular surgery, each of her specialists confirmed, would be extremely precarious for someone her age and with her history of pulmonary complications. To proceed with a spinal surgery when we aren't even sure there is something to repair, but expect the recovery to present significant challenges to other systems in her body... isn't something we're willing to do at this point. However, we are keeping our eyes open watching for any symptoms to arise that would point to a surgical necessity. 

So there you have it. We are in a, dare I say it out loud, lull. I lovely peaceful happy lull and for that we are all grateful. Quite a lot of visits to a Children's clinic since May 19 when we returned home.  7 months worth of scores of appointments. We've had the privilege of watching our terrified little 15.5 pound little girl go from screaming and sweating and turning blue through doctor visits and lab work, to walking confidently down the hall at doctors offices as if she owns the place. She hops up on the scale smiling, she takes charge of the stethoscope and shows the doctor right where it should go, she happily lays still for exams and sits up "tall" for x-rays. She cries for shots, but abruptly stops at the sight of a sticker (she usually doesn't leave without two in each hand). She smiles and sometimes offers hugs to the doctor before they leave the room. What a transformation in this little girl. 

And she doesn't even know what a miracle she is.  But I do. We all do.