Two hospitals in one day

Mommy and I went to St. Louis again yesterday for some more doctors and stuff. We left very early in the morning. This time, we went to a different place than where we usually go. We went there because they have a big place just for kids like me that are little but need glasses to see better. Mommy told me that when I get my glasses that I will see all kinds of things I don't get to see right now. I'm not sure how that works, and I don't like when they put the glasses on my face to try them on, so I don't know if I'm gonna like this thing of wearing glasses.

First we went to St. John's so we could pick out my glasses. Miss Mary helped us, and she was very nice. Mommy put some of them on my face, and they kind of make my nose feel funny. She decided which ones she liked, and I told her they were my favorite too. And guess what color?? Pink, of course! We will have to go back and get them in a couple of weeks. I sat like a big girl while Mommy was paying for everything. There was alot to look at in there!

While we were waiting to get done, Mommy asked Miss Mary about our new little friend Levi who was in that hospital, but he got moved. I'll tell you about him in a minute.

After we got done, we met Auntie Rachel for lunch since we were close to where her new job is. She works for a different hospital, but we thought two in one day was enough, so she came to meet us at the lunch place. I played with the shiny paper that the chips were on, and then I sat with Auntie Rach for a while and tried to grab her pizza. Mommy said I could eat some if I wanted, but I didn't...I just wanted to play.


We finished up with lunch real fast and went to our regular hospital called Children's. I met with another nice Miss Mary who talked to Mommy about how I eat. She said they were going to do something called a swallow study, but Miss Mary decided pretty fast that I didn't need to do that. I swallow just fine, thank you!

She watched while Mommy fed me some, but I didn't really want to eat. Then Miss Mary gave me a thing called a Crunchie. It was pretty fun to hold on to and after she put it on my mouth, it kind of tasted good too.


I even held it by myself, which made Mommy all surprised.

After we finished with Miss Mary, we had some extra time, which was very good. We went to find our new friend Levi. Mommy knows the story better.

I knew a guy in high school from church camp, Michael, and hadn't really thought about his family in probably 15 years. My parents have kind of kept up with them. Earlier this week, Michael's wife Carrie had a baby, Levi, who was born at less than 3 lbs. He has some major heart issues and will need multiple surgeries, but currently, they're working to get him to at least 5 lbs before they can consider operating. When Carrie was discharged from the hospital, they transferred Levi over to Children's. Since we were at both St. John's (where he was born) and Children's on the same day, I felt strongly I was there to make contact and offer a little encouragement, even if I hadn't seen them in so long.

I'd never met Carrie, but I waited in the NICU waiting area until she and both her mother and Michael's returned from grabbing lunch. It was nice to see Michael's mother again, and Carrie and her mother were both very sweet. I talked with them a little bit, just trying to encourage her. She told me the doctors had given them the possible scenario that he might not ever come home, and they asked her and Michael to consider the possibility of taking him home soon to simply spend what time he had as a family. How can that kind of a decision be made? How difficult that must be?!

So your prayers on Levi's behalf are appreciated. I'll be checking in on them again when we're back there soon if he's still inpatient.

After we checked on Levi, we went down to wait to see Dr. R. I spit up on my shirt, so Mommy just took it off. It was alot of mess. That's why I've got no shirt on. I thought it was pretty fun to play around like that. Mommy kept a blanket on me so I would be "proper."


When they put me on the silly scale, I was 15 lbs 0.8 oz. Finally made it to 15!! Mommy was happy about that. Then she put me in clean clothes and she was happy again. Dr. R thought I looked pretty good, and my button too. He said Mommy could start feeding me different. They talked about milk and something called Pediasure.

When we came out from seeing Dr. R, it was snowing! Mommy called Papa Beagle to see what the computer said about the weather, and we decided not to go home. Mommy doesn't like to drive in the dark and Papa said it was gonna be slippery too. So we decided to go to Grandma C's house for the night. We watched the Bears game with them and Grandpa J played with me by the neat tree they had in their big room. It had lots of lights!

Today we came home before it got slippery again. Our house got lots of snow! It was good that we didn't go home during the snow, because we saw a whole bunch of cars that slipped off the road during the night. But we made it safe!

Better evening

It's been a nice evening. I haven't felt so icky tonight. Mommy has made me a bundled up place to lay so that I'm comfy on my back, so I don't mind it so much. Auntie Rachel and Mr. Patrick came by to see me, and Auntie Rachel brought me a pink panda! She has brought me a different kind of panda every time I've been in the hospital, so I have three of them now. Thanks Auntie Rachel!

Then Grandma C and Grandpa John came to see me too.

I showed them how I can play with some of my toys a little and I got to watch Baby Mozart again, which was fun. I decided that I'm gonna kick my foot like I always do even though it has a big thing on it and a tube in it. Mommy says that is there so they can give me medicines if they need to, but since they're not using it, I decided I'm just gonna kick it off. I'm trying hard, too!

I just had another feeding at 10 o'clock, and now it's time for bed. Mommy's especially tired, so I'm going to try to sleep all night like a good girl so she can rest too. She told me that they'll come in to clean my thing while I sleep, but I hope they don't wake me up. G'night!

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.

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!