Thursday, July 19, 2007

Mommy report: Good GI appointment

We met Dr. R, the pediatric gastroenterologist, today for consulation regarding the G-tube. My issues with it are really just trying to determine how to decide when it's time to look that direction. He was very informative about what it entails and it's risks and benefits. But the good news is that he said, although she would be a candidate, she is not at the point where she NEEDS to go that route. That's good, as far as I'm concerned. Since she is not having any necrosis concerns in the nose or throat, and since she doesn't seem to eat or nurse any differently when the tube is in or out, we are not at the point where we need to get the NG out for good right away.

She has eaten (breastfed) much better the last few days, so that is encouraging. She was going to spend this upcoming week with Grammy Jan so I could get some much-procrastinated work done, but since she's doing better and being more consistent, I'm not going to give up on her yet. Dr. R agreed that we should continue to work with her on this and other oral therapy helps and touch base with him in a couple weeks. He did order some blood work, and we had it drawn after the appointment.

On a separate topic, but still GI related, he is concerned about her constipation history along with the DS diagnosis, so he recommended that we do a biopsy of her rectal tissue (ewww and ouch!), and we've scheduled this for Monday since we're already down here. We've made arrangements to stay the extra day (Thanks tech group for being so darn flexible!!) so we'll be able to get that taken care of Monday morning. He's looking for Hirschsprung's disease, or hopefully ruling it out, but I hope it's not too traumatic. They don't sedate for it, but it's supposed to be very minimally uncomfortable. I have to say that after researching this quite a bit, I really don't think she has HD, but since the procedure to verify that is minimally invasive and quick, we'll go ahead with it.

Thanks for all prayers and well wishes. I am praying hard that she continues to feed well and even better all the time. I'm optimistic that she can overcome this feeding stuff without resorting to the G-tube, but I'm aware that it might be necessary at some point. For now, we'll keep working on the progress we've started.

And now, it's feeding time again.

Tuesday, July 17, 2007

Think back. Move forward. It's time.

Today I was catching up on my DVR recordings...I set it for lots of stuff, but don't have time to watch so much of it. Something most people close to me know--I'm kind of a "church nerd," you might say. I like good sermons. I love going to hear great speakers challenge people. And I like listening to Christian talk's one of my favorite things about going back to St. Louis for visits and appointments...I always get to hear something that I really needed at that exact moment. I like listening to speakers who tell me things that challenge me and help me grow.

One of the guys that I listen to alot is Dr. David Jeremiah. I don't agree with every little thing he says or philosophy that he holds, but he often deals with things in a manner that makes very clear which areas of my life that I need to evaluate and improve. His style of presentation is very straightforward, which is what I like. Some people like a happy comfortable sermon or topic, but I prefer the ones that step on my toes and make me take a hard look at myself. (I have not always liked this style, and it's still a little interesting to me that I do now. I think it's because I've seen how the heartbreaking can bring about the beautiful.)

So I've got my DVR set to tape Turning Point with Dr. Jeremiah each Sunday morning, but I usually don't get to see them until they are many weeks old. The last couple of days, though, I've made a point to try to catch up on them while I'm pumping or feeding the poonchin. There have been several great messages in the ones I've gone through: One about the example that Joseph's life shows us in how difficult circumstances are used by God to prepare for ministry to others and victorious outcomes. It was a good one. I needed that one.

This message I've just finished was called "Think back...Move forward... It's time." It's from the 9/11 memorial, where Dr. Jeremiah recently visited. But I agree with him that it's a fitting thought for everyone. Thinking back and remembering is important, even if painful, in that it reminds us of how far we've come and what we've endured. Yet we cannot live there, in the past, regardless of what it looks like. We must move forward. And now is the time to do it.

Thinking back is not always on bad times. Sometimes it is in dwelling on a very good period that makes us discontented with our current circumstance. It is not only the painful past that must be left in the past, but the glory days, although appreciated and enjoyed, must also remain where they live. Many of the most difficult moments in my life stemmed from one's inability to let go of a fantasy from many years past and deal with the reality of today. Most of us loved being 19 and free, able to do whatever we want. But to be angry about the loss of that perceived freedom to the detriment of the blessings that are being allowed to pass by unnoticed in the present...this is a tragedy of the saddest kind. Move forward, it's time.

For me, this is paramount to my survival and my sanity. I could dwell on the disappointment of my daughter's Down syndrome diagnosis and all that will mean, or I can enjoy her for who she is...exactly who she was meant to be...and be blessed by her joy, her charming smile, her adorable giggles, and the irresistable cuddles. There will be trials, but we keep moving forward.

I have endured more heartache than I would have ever believed was possible. I have a horrible habit of spending too much time thinking back, hurting through the painful moments all over again. Why did it happen? How could I have stopped it? Why didn't I see it every time? What did I not see that I don't want to miss the next time? What if there is a "next time"? How can I possibly recover? Will I ever trust again? Will I ever be able to function normally? Dr. Jeremiah had two points that spoke clearly to me...It's right to think back, but not right to GO back. It's right to look back, but not right to linger. Looking back, I can praise God for bringing me this far, but I must not linger there. I must move forward. Life may never be the same, and it may even be worse before it's better, but I know that HE will see me through. He simply asks me to move forward, trusting Him. The rest will fall into place according to His plan, the BEST plan.

Sunday, July 1, 2007

Pudding is yummy

We went to church at Grandpa J's church today. There was a whole bunch of music time, and I like music, so that was good. I sat with Grandma C today. She and Uncle Ethon had to work on my feeding stuff at church because it was being difficult for them.

After church, Mommy and me went with Grandma and Grandpa to Miss Cindy's house. And it is a really, really nice house. She had everyone from church over to swim and eat lots of yummy food, at least Mommy and Grandma C said it was yummy. Grandma C decided to try to give me some bananas, but they were different than my normal ones. This was called pudding, and I liked it alot. Grandma gave me enough to make my tummy full, and it was so yummy!

Everyone played games for a while in the evening, so I sat with Mommy so I could watch.

Then I got all sleepy and took a nap on Pop.
We finally left to go home about 9:30 tonight, so it's going to be very late when we get home!