Made of Gray

Updates - Feeding & iPad

Holly D Gray13 Comments
Things have been moving along wonderfully with Caleigh's continuous feeds. Right now she is at 34ml an hour/24 hrs a day. I estimate that she will be at full feeds in the next 4-5 weeks if all goes well. I've got a call into our GI doc about reducing Caleigh's TPN again. She's gained another half a pound this week. 30.6 lbs. We are very close to getting off of TPN. Very close.
I felt like the worst parent in the world this week when Caleigh started having coffee ground type of stools again. Meaning blood in her stool. Eric and I couldn't figure it out. We were close to taking her in to the doc when we discovered the culprit. About 2 weeks ago I ordered Caleigh's probiotics because we were running low. When it didn't come in I contacted the company and they told me it was back ordered. No problem, I thought. I told Eric to run down to Walgreens and pick up some Culturel. This was the first probiotic that Caleigh ever took and it worked for a long time. After 3-4 days on the Culturel, blood in her stool and not sleeping well; we decided to skip a night of Culturel to see if it made a difference in Caleigh's sleep. Caleigh fell asleep quickly, I sat on the couch and Eric and I started going through the what ifs and whys and then it hit me like a ton of bricks. I jumped up, ran to Caleigh's fridge and pulled out the box. In bold black with asterisks it read "this product contains milk proteins." Ugh. Worst mom of the year award....right here. I didn't even think about it, my goodness. We didn't give her anymore obviously. A terrible part of the whole ordeal is that Caleigh had been telling us on her iPad that she felt sad. I thought it was her new favorite saying. Turns out she didn't feel good. Caleigh's stool is back to normal and she's sleeping through the night again. She hasn't told us that she is sad anymore either. Just a reminder that I need to pay attention to ALL labels no matter what we are using them for.

Speaking of the iPad, Caleigh is doing amazing things with it. She's excited to use it. She is getting her point across. The best purchase EVER. I made a keyguard out of glue sticks (still waiting on that plastics patent) and it has helped a lot. I don't have to hold Caleigh's elbow anymore. I had moved the choices to 8 squares back before the 3 inch growth spurt. She was doing great with the smaller squares. Caleigh's dystonia was a little out of control so I went back to the 4 larger squares to avoid frustration and she's doing well with it. Caleigh has also figured out that if she accidentally chooses something that she didn't want, she can hit the home button to return to the main choices. I didn't teach her that, but I guess she picked up on me doing it for her.

This video is of the iPad with 8 squares. This was right before I switched back to the 4 squares. She makes a choice that she didn't want and then chooses the home button to start over. Caleigh has been asking for a drink a lot more. Maybe a drink on her terms is much better than a drink on mommy's terms? Caleigh's verbalizations have really picked up since she started using the pad. You can hear her try to say drink before she chooses it.

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