Celebration

Scenerio #1: Mallorie is NPO for a certain number of hours, has an IV placed after who knows how long, is put under general anesthesia, and has her eyelids sewn together over her right eye. We are told it will probably be for life. We wait anxiously through the surgery and the recovery time, and drive home.

Scenerio #2: Mallorie has an appointment with a new opthalmologist. The resident she is helping to train, and the ophthalmologist both spend hours, asking good questions, and really listening to things we can tell them about Mallorie. Things you wouldn't know about her if you simply knew her gene make-up. Or knew another child "like her." The ophthalmologist does a really thorough exam, and agrees that surgery is NOT the best or first option for Mallorie. And that really good lubrication and effective taping at night can possibly accomplish the same thing. Tells us that we are doing a good job of this right now. Gives more specifics (like using an ointment at night with the taping, and not just a gel or drops). Says she will see Mallorie for a follow-up appointment in 2-3 months, unless we have a problem and need to see her sooner. Then we can just call, and have her seen on an emergent basis.

If I knew how to dance, I would have to record it for all of you to see right here. We had scenerio #2 today. And I am dancing in my heart. The new doc did say that in children under age 5 yrs, if an event prevents visual input from reaching the brain for any prolonged period of time, vision is lost. Permanently. I choose today not to worry about that. If that is the case for Mallorie, then what is done is done. It is still preferable to other things that could have happened to her, and I choose to focus on the gift of being free to cancel out on the surgery which we felt rushed into, and had no peace about. I am thanking God for the respiratory problems that made us have to cancel the surgery plans, and gave us time to meet this new doctor. Plus, I know some really happy children who are visually impaired and even blind. I don't expect Mallorie to start losing her joyfulness any time soon. And her unaffected eye is good, externally, and in the back (inside). She doesn't need glasses, and everything about that eye looks good to the doctor.

I left that office today with a weight off my shoulders and so grateful for good medical care, which includes listening, listening, listening.

Some old pictures I found on a CD today.

Appointment on Wednesday

I have an appointment at noon on Wednesday at the major cancer center in Houston. This is a wonderful thing, a huge answer to prayer, to not have to wait weeks and weeks just to get an appointment.

We are so grateful to those who are helping with the kids, including Mallorie. John got the information about the appointment, and was told to plan on being there 2 days. I don't know if it was "at least" 2 days, or just plain old "2 days." A friend who has had to go to the same medical center recently said that she had been told to plan to stay as long as 5 days, so that's been on my mind, wondering.

I'm nervous (major understatement here), but more relieved to have this day come because it feels like life is on hold right now, knowing nothing of what to expect. Will there be weekly treatments, more often, less? Can any be done locally, or all out there? I think that some of those answers, if we get them, will help with adjusting our lives to this. Some answers, I know, are just to wait and see. Never has been my biggest forte, the wait and see part, but I am sure I will learn.

The kids are starting to really show signs of problems coping with the news, so please pray for them as you think of us. They are just kids, and it's very hard on them.

Going Home Soon

Mallorie's breathing is great, her cool g-button is in, her last breathing treatment for the road, done.

The pedi covering the hospitals was kind enough to come by this evening to check on Mallorie so he could give her the OK to go home. We're almost out the door. Just a few more things to do and we can all sleep in our own beds/cribs tonight. We're a happy crew.

We've had wonderful, caring treatment here. ER, pediatric unit, nurses, doctors, respiratory therapists, radiology staff, housekeeping staff. I am not exaggerating a bit to say that it felt like a home away from home. One respiratory therapist even finished a treatment a couple of nights ago, and then asked if he could pray for Mallorie. We are very, very grateful for the care and for the kindnesses.

Specific answers to prayer

Hey, I forgot to tell everyone how God answered ALL of the specific requests we had from September 18th!

IV site. I had told you that her IV's in the past had been pretty much all in her scalp. So I only expected we'd be lucky if they got a scalp IV, because her veins in her limbs just can't be located. Well, the amazing Dr. B (the anesthesiologist, not one of Mal's mommies) found one on her tummy! Right above her g-button. I couldn't have been more surprised by that, nor more pleased. It was SO much easier to keep safe from being pulled out in that site.

Successful surgery with no problems during or afterward – particularly no respiratory problems. There were NO problems. In fact, when the resident came in the next morning and said he'd be back to check again that afternoon, and planned to discharge her the following morning, I told him she was FINE. We were ready to go home that day!

No pain. She was so comfortable, and didn't really require any IV pain meds after she left the recovery room. And only one nurse held off on her pain med when Mal was having pain (the nurse pointed out that it was 10 minutes early.) Ahem. Let's just say that this silly little moment reminded me that the best place to recover, if there are no respiratory problems, is at home with your family. Mommies and daddies don't seem to quibble over the odd 10 minutes here or there on the day of surgery. OR afterward. :)

No problems with gagging/vomiting. We not only had no issues with these, but we got a cool new "tool" that I'll share in the future, a squirt bottle so we could give her Pedialyte by mouth. We've learned in the past few months that a few cc's of water or Pedialyte to sip will usually stop the gagging right away.

I was realizing this morning that it could look like we just accepted this all, without question. Nothing could be farther from the truth! We took nothing for granted, and stood by in awe as everything fell into place. When Cathy would text for updates, there was simply nothing to tell except that she was doing so well! We were able to remain calm while she was in surgery, and kept trying to read Hannah's literature book and stop reading all the "tween" magazines that Matthew and Hannah talked John into purchasing.