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A little relief

To recap, last week we realized that Raya was showing signs of not completely tolerating feeds so we slowed her down from a 25 minute feed (which she's been on for a long time) to 45 minutes. We also started using Farrell bags again because they allow any gas or air to escape from the stomach during feeds and allow the formula to run in as the stomach is ready for it.

So far it seems to be helping a little. She definitely seems more comfortable during and after her feeds. The tricky part is that I have yet to get the Farrell bags to work when she's out of the house and we don't have something to hang it from so that it's a couple feet above her stomach. If we don't have it that way, the formula will NOT go into her stomach. (ask anybody that happened to see us at parent teacher conferences. we were a circus act with all that extra tubing and a bag full of formula+chocolate floaties from the M&Ms she got into earlier that afternoon)

So yeah, we're currently only using the Farrell bags when we're at home or in the car and can hang it up higher than her head. The one that seems to make the biggest difference is the afternoon feed so thankfully most of the time we're home for that one.

Friday evening we went to a little get-together and the kids got to have one last swim for the summer/fall. :) They all said the water was freezing (so did Donny) but Raya didn't care. :) She loves cold.
All the other kids kept getting in & out but Raya just kept swimming. :) She was the last one out. She's come a long way since the beginning of the summer with keeping her face out of the water. She only inhaled water a couple times and didn't gag when she coughed it out. She must have really worn herself out (and maybe the melatonin is helping...) because she took a nice, long nap yesterday for the first time in however long it's been. I can't remember. It's been a while.

Today was a long day for me. Normally she stays home from church with her respite provider so that she can have a nap (since church is during naptime) and so that she can avoid germs in nursery. This week her provider wasn't available so Raya got to come with me. Like I mentioned, church is at naptime. She was a tired girl and crowds can be difficult for her. She had wanted one of her "special pancakes" before church but we ran out of time (it takes her an hour to eat one pancake) so she didn't get one. I brought a baggie of Kix with us but she was totally not interested. We escaped to the mothers' room for a minute to vent & do meds and then sat back down. She had no interest in sitting (on my lap, on a chair, on the floor, etc.) and kept saying rather loudly, "I just wanna PANTATE!!" So the I felt bad for not giving her a pancake but we didn't have time. I knew her stomach needed something in it so I went to connect her feed and her G tube balloon was getting sucked down into her pylorus again. That can't feel good. I pulled it up and connected her while she tried to block me and kept saying, "I don't wanna be plugged!"

Church is long. As in 3 hours. It's kind of a lot to ask of an almost 3 year old (and her mother), but she did pretty good considering she should have been at home taking a nap and she went to the adult classes with me. She didn't want to wear her backpack. I don't remember what I said to convince her to wear it but whatever it was worked. She spent most of her time rolling around on the floor and playing with little plastic knights and a cheetah and either smiling and being all cute when people talked to her or making a sound and pulling away from them. A couple of people got close to her and started talking to her and patted her leg or arm. She did NOT like that and pulled away, which was followed on both occasions by comments like, "Oh, somebody's tired!" or "Somebody's not very happy!" or something to that effect. I felt bad for Raya because I knew that her reaction had NOTHING to do with her being tired, she just didn't want people touching her. She was really whiny and bossy all the way through church and I realized I was feeling very self-conscious about it. I felt like people were going to see the way she was acting and write it off as bad behavior and assume that it was my fault because I'm the mother.

Really it shouldn't matter what other people think but knowing that and feeling it are two different things. I just hate feeling like she's being misunderstood. She was just having another rough day at the end of a long, rough week but to anybody else, she just looked like a tired cranky little kid who whines and yells a lot. I'm grateful to have moved back to where we lived when she was born so that we're among friends who knew us when she was medically at her worst. Today was a little bit of an eye opener for me though. Seeing her like she was all day today (tired, crabby, whiny, fidgity, ornery, sassy, weepy, etc.), it just makes me wonder how in the world she's going to handle school.

Later in the afternoon, I vented her before a feed and when I popped the clamp open, she looked at the extension tube and said, "Slobber!" And she was right, the tube was filling up with bubbly saliva mixed with chocolate that she'd eaten about 4 hours earlier. (delayed gastric emptying, anyone??) The gross part was when I went to dump it down the drain and she yelled that she wanted to drink it. Sick. The evening was better than the rest of the day. She sat at the table and had a few bites of potato and a couple bites of cooked carrot for dinner. She was a little upset that I didn't give her butter but she still ate a little.

Again, I found myself feeling frustrated today that THIS kid was not the one I brought to the preschool evaluation last month. We have our results meeting on Thursday afternoon so I'm trying to prep myself emotionally for it, whatever that means. It's hard to prep for something when you have no idea what to expect other than for it to be an emotionally exhausting and potentially aggravating/painful/frustrating experience. I just keep telling myself that I can appeal if I don't agree with their findings and we'll go from there.


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