Appointments, appointments, & more appointments

"For You formed my inward parts;

You wove me in my mothers womb.

I will give thanks to You, for I am fearfully and wonderfully made;

Wonderful are Your works,

And my soul knows it very well."

Psalm 139: 13-14

Well today started last night. You see, we had two doctor's appointments today. One was for Tara with Dr. Plavidal. The second was for Laura with Dr. Macicek at Texas Children's Hospital.

To prep for these appointments, I got Laura's stuff ready last night. This included getting a couple of bottles ready, and putting two nipples aside. Grabbing her two syringes (one small, one large) in case we need to feed her through her NG tube. And of course her stethoscope to check the placement of the NG tube, before we do the tube feeding.

Then there was packing Laura's diaper bag. Diapers, baby wipes, Vaseline, baggies, change of clothes, blankets, and I think that was it.

Today we got up about 6:00 am. Tara headed off to feed Laura, while I grouchily went about getting our breakfast ready. As many of you know, I am not exactly what you call a morning person. Getting up before 9:00 am seems like the most egregious of sins to me. How can anyone be happy to get out of a nice warm bed for any reason. I have been known to sleep through alarm clocks going off (those that survived). But up I got. After everyone ate, it was a hustle to get everyone ready. Mostly Tara and I, because of what I had thought I had done last night.

So, I do all of this prep work last night, to help get us out the door by 8:15 am to be at our 9:00 am appointment with Dr. Plavidal. Some of you maybe saying that is an awfully early time to leave for a 9 am appointment, and you are right. But you may not be familiar with the RUSH HOUR TRAFFIC here in Houston. It sucks, to say the least. So the smart money, when you live in the Galleria area of town and are planning to get on the South West freeway for any amount of time, is to plan for a long creeping drive. So imagine my surprise when we leave at 8:10 am (yup 5 minutes earlier than planned) and we are at Dr. Plavidal's office by 8:25 am. That is right, no traffic. Tara and I did not know what to say or do. We were in a state of shock. I know it is the baseball all-star break (go Hunter and Tejada), but I did not know that meant everyone was off for the day. It was both cool and a little eerie.

The appointment with Dr. Plavidal went well. Tara is cleared to do what ever she wants or needs, aside from lifting heavy weights (you know cars, heavy bags, furniture). She was quite excited. So was I. She can drive me around now.

We were out of Dr. Plavidal's office by 9:30, and headed to Texas Children's Hospital for our 10:00 am appointment with Dr. Macicek. Fortunately they are not far apart and it only took about ten minutes to drive and park. We got checked in and waited, and waited, and waited. Then just when we were about to be bored out of our minds, we waited some more. At about 10:45 am we decide we needed to go ahead and feed Laura. We get a bottle warmed and discover that I forgot to pack the small syringe, plunger for the large syringe and the stethoscope to check the NG tube placement. This means that we had to feed her from the bottle. Which is fine. Yesterday she got up to taking an ounce from the bottle in about 30 minutes (this fact will become interesting in a minute). So as we are getting started with the bottle feeding we get called back for the X-ray of Laura's lungs.

So we go back. In order to get the best picture possible, we had to take Laura's shirt off. While I was taking it off, I accidentally pulled her NG tube out. This pretty much nixed NG tube feeding for the day. Anyway, we get the X-ray done. Then we get sent back out for . . . can you guess?

I bet you can.

That's right, more waiting. Fortunately, this time it was not as long. Only about 10 minutes or so.

So it is now about 11:15 and we are all tired and hungry. And sure enough every time we try to feed Laura someone comes in to check her or talk about her. It was really frustrating. So we meet with Dr. Macicek and the attending for about an hour to discuss what is going on with Laura. Bottom line is they want to increase her caloric intake. Dr. Macicek calls over to the nutrition department to have a Dietitian come over and discuss what we need to do.

This lady comes over, sits down, and asks what our current routine is. We explain that Laura gets about 85 mL milk/formula every 4 hours. The lady's response is that, this is wrong and we need to be feeding Laura every 3 hours. She then asks why we are on this type of schedule. We explain to her that our Pediatrician is trying to get Laura to wake up for feedings instead of us waking Laura up. She again informs us that this is wrong and that we should be feeding Laura every three hours and waking Laura up. I pointed out as nicely as I could (I was fuming at her attitude and the fact that according to her, everything we are doing is wrong) Laura sleeps through the feedings at 3 hours. We also pointed out that when we were feeding Laura every 3 hours, Laura was getting 72 mL's. At every 4 hours, Laura gets 85 mL. She continued to tell us that Laura is not getting enough and that we need to change it back.

She then asked about Laura's therapy. We told her that E.C.I. comes about 3 times a month. She spent about 2 minutes trying to discredit E.C.I. then said that this therapy schedule was unacceptable, and that Laura needed to be in therapy multiple times a week. She then told us that TCH has many therapist's that could work with Laura, or she suggested that we could even hire a private therapist to work with Laura. It was all I could do to not rip this lady a new one.

When we finally left I was livid. Fortunately, Tara and I were able to talk it out and I felt better. Tara was not much happier than I was. Unfortunately, things like this are going to happen. If these suggestions made by "knowledgeable people" do not work with what you can do, you do not have to give in to them. You are going to do the best you can with your Down's child. That is all any of us can do. Make sure that you love your child, and you are showing your child your love. That is what they need more than anything else. The rest will fall into place.

Anyway, we finally left TCH about 1:00 pm picked up lunch on the way home and then crashed from the day, after we replaced the NG tube (again, I hate that thing). Thank you to Jennifer Trevathan for bringing us dinner tonight. It is much appreciated.

Below is a picture of Laura once we got her back home today.