This morning we had a visit with Lillian's ped to talk about possible refluxing issues. Her ST thinks that may be what is causing her delay in speech and eating. After visiting with the good doctor, I think it may be years before we see her eating and possibly talking. Who knows. We are starting some prevacid again to see if that helps. I have been up numerous times each night repositioning her on her pillows bc she is coughing her poor little head off all night. At first I thought it was allergy, but after watching her in the mornings before she wakes, I believe she is refluxing. I HATE medicating....seems like the side effects are always worse than the help they offer...hopefully we will see some improvement in her sleeping over the next week.
We also discussed her vesicoureteral reflux (that hasn't been checked in a very long time) and he agreed we should do a VCUG and ultrasound to see how things are going in that arena.
I asked him about the possible glass in her knee and he thought it was probably not there anymore because he could not feel anything, he said there should be granulation tissue. Oddly enough, he told me glass doesn't show up on xray. SO- exactly what was that foreign body I saw with my very own eyes on that xray??? Very strange.
Her stoma site looks really good. The tissue there bugged her so much that she actually picked it all off. It was nasty, but it is gone now. She is now making the "p" sound with her lips, but not often. It is fun when things come out when I'm not expecting it.
We discussed her constipation issues again, I was starting to question if she might have some disorder that would cause her such trouble. He did not think so. Just have to stick with the miralax, suppositories, and prayer.
She is about the size of a 2 1/2 year old child, and is sitting in the 1 percentile on the chart...this just makes me giggle. He says her weight to height ration is good, so no worries there for now. With the chromosome issue, we have been told she will be small, so it is really no surprise. She has no fat on that tiny body...(wish I could say the same for myself...perhaps I could make a donation to her if need be, ya think?)
Here we are, almost 4 years old and I look back and can't believe the journey we have been on.
My cousin said it best today, blessed be the Lord.