Today Jillian and I went up to Children's clinic on Moorland road to visit a feeding therapist for an evaluation. She had not had a feeding evaluation since she was inpatient in April so it was time to look at it again.
When we first went in we went over the Jilli health history. She looked exhausted just hearing it :) Then we talked about what Jillian does for taking food by mouth (1 bottle once a day of 15ml breast milk). She said she wanted to see how Jillian did with a spoon and with breast milk on a spoon.
Before we started with the spoon the therapist first tried with putting her fingers in Jillian's mouth. She was receptive to it. She felt around her mouth a few times and tried a few different things. She said that her oral motor skills looked good for never having finger food in her mouth. The only thing she did not do was move her tongue to the side of her moth that the finger was on, instead she always left it in the middle of her mouth. She said that was not a big deal though because currently Jillian had never needed to use that skill so her not doing it was not surprising.She said this showed Jillian was not ready for any finger foods like puffs.
I had brought with one of the spoons that we have at home that she plays with while we eat dinner. The therapist put 5ml of milk in a cup that she spooned out to give to Jilli. At first she did an amazing job of eating the milk off of the spoon. She would put her top lip down and take it like she had always been eating that way. The therapist was really impressed.
Then She mixed a little bit of rice cereal with 10ml of milk. Jillian took this off of the spoon nicely too. She became less coordinated with it as she went on but for her first time spoon eating she did great. The therapist said she was really impressed and was not expecting that at all. Also as eating went on she went farther and farther between bites and would put her passy in between bites, which is Jillian's signal that it hurt, but she kept on trying her best. After she finished eating we let her sit in the high chair and we worked on updating things about her eating into the computer. This is when Jillian started to have a hard time. She started to reflux about 3 minutes after she finished eating. She was sucking that passy 100 sucks a minute, her arms and legs became stiff, she was bright red and she would intermittently yell out. It would be bad for a few minutes at a time and then she would calm again. She was trying to rip off her bib so we took it off for her and let her hold it. She wrestled with the bib like it had just tried to steal something from her. You could her hear refluxing, gulping, and her vocal cords sounded horse. Her breathing became more labored and varied from fast to slow.
After about 20 minutes we decided it was time to show off her bottle skills. She spit out her passy like she is suppose to when I brought the bottle to her. She would not hold it but did a great job drinking it, in about 45seconds, which is a normal time for 15ml of milk. After the bottle was over I sat her up. After about a minute she started to reflux. It was like trying to hold an unhappy monkey. She was all over the place and very hard to hold because she was trying to get comfortable. She was sucking on her passy a lot, making swallowing sounds, and throwing her head back. From they was she looked at times you would have thought the ceiling was very interesting.
The therapist and I then talked. She said it pains her to see how much pain Jillian is in when she eats. That she has great oral motor skills and defiantly does not have an oral aversion. She then said she was unsure of the next steps. That a part of her almost said to not have Jillian eat by mouth anymore because she was worried that one of these days an oral aversion would form. That was the eating by mouth worth it? That because she has such great foundational skills that if she was able to eat later on without pain that it would be a lot easier to regain these skills since she already has them, then to fix an aversion problem. We decided that since for right now she is still willingly taking the food that we would keep going with it. We decided that we would try spoon feeding her 5ml of plain milk and then 10ml of the milk mixed with rice cereal for the next week to see if it made any difference. It did not in clinic today (it was almost a worse reaction) but that we would try it. She suggested staying with the 15ml because that is what has worked and we don't want to up the volume and change the form at the same time because then how will we know what went wrong if something goes wrong.
We also decided that staying with the stage 1 bottle nipples were best because she is sucking them perfectly and we don't want to mess with something that is working. She said that for now it is best to stay with just the milk and not add other things (except the rice), especially if we might be taking food away if she starts to struggle with the pain more and because we dont know of any possible allergies and we don't want to add problems. She said that Jillian is not a kid that we would be working on taking the passy away from anytime soon because it is a coping method and is helping her in dealing with the pain and in keeping oral motor skills.
She said that we did not need to come and see her again anytime soon but she is a resource for us and is here to help us in any way. She said to let her know how the next week with the rice goes. She said she would put a call into the GI about the visit.
Overall today would be a middle of the road reflux day. By no means was it her worse, but it showed them what a little taste of Jillian's tummy troubles where like.
After we finished Jillian and I went across the street to Target to buy rice cereal. While we were there she was not her normal talkative smiley self. She just sat there, dazed.
Once we got home I changed her diaper. She had pooped out of it. She is not pooping out a lot right now but it is coming out with some force behind it causing most of it to be out of the diaper instead of in. While I was cleaning her up I noticed the inside of her g tube looked nasty (its clear) and I had just flushed it with clean water this morning. I hooked up a syringe and vented out 8ml of tummy contents. There looked to be some grains of rice cereal still in there from 11:30 and it was now 2pm. Yummy! I then flushed her with 3ml of clean water. She has been kind off all afternoon. She has been throwing herself around and not wanting to play. She has been having episodes of reflux too.
Also while I was changing her I noticed that her rash is coming back. It is looking better again this afternoon. I'm not sure what these little bumps are. Maybe just another mystery of Jillian. Hmmm....
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