So the shared room thing was unsuccessful yet again and Anara ended up back in the tiny pack-and-play in the guest bedroom. Pretty soon the only way she is going to fit in that pack-and-play is diagonally. When I say unsuccessful I mean that after an hour nd a half of them yelling, talking, jumping, singing, and 4 trips to the potty I decided to separate them.
The good news is that Violet stayed dry all night and didn't wake to be taken potty once. I think she was pretty proud of herself. I guess that is the key for her - no drinks after supper and multiple trips to the bathroom beforehand ;) At least that is what worked last night.
We spent about 4 hours at the hospital this morning. Anara saw her developmental pediatrician and we added one more doc to the regimen, a behavioral pediatrician. She had some granulation tissue burnt off her g-tube, one spacer taken off the g-tube and some work done on her skin. A skin nurse (wound nurse, ostomy nurse whatever they are called) put a sheet of something over her abdomen to preserve her skin integrity. We tape and retape so often that she has developed this weepy rash. Apparently this plasticy, gummy sheet will stay there for at least a week and allow us to tape over it.
The most recent development is that Anara's tonsils are large enough to almost touch in the middle and maybe they are causing some problems. I remember the dev. ped. saying something about that her first visit, but never thought much of it. She is wondering if Anara's restless sleeping, night waking, and loud breathing during sleep is caused by the tonsils (sleep apnea?). I told her that the smell of Anara's breath can mislead us to check her diaper and she said that also might be tonsils holding rotten food. I just thought it was because she was on so much antibiotics all the time and didn't eat much. The tonsils also might be exacerbating the feeding issues (gagging and puking). Now we get to do a sleep and swallow study. Part of me thinks we are getting by just fine so why do we need more exploratory stuff and part of me wonders if maybe there is something wrong.
5 comments:
Oh my....I was going to comment on your earlier post to say that Meagan was in pull-ups at night until her 4th b-day! But, sounds like maybe you are in the clear now! I'm glad Anara is having the swallow study...you know I am always on my "reflux" soap box with you, but the swallow study will give you some good onfo about that. Be sure to tell them if that is a concern and the radiologist can scan a little further down to see how things are moving in the esophagus. Hope you all can come to NiNi's party but I understand if Anara has alot going on now;) Ok, I should have just emailed you, right!
Hey Amanda...
Just thought I would share that my boys have all their stuff in one room, which they will eventually share, but for now, Carter sleeps in a different room. We also tried putting them together at one time during a nap... But yeah, that ended up with us hearing Carter in the moniter whispering to Jordan, "Hey Jordan, watch me jump on the bed." Followed by lots of jumping and laughter. Nik still trys to pressure me to put them together at night, but I know better. I am going to hold off for another year. And Carter is 6 months older than Violet and Jordan is 1 month older than Anara. So they are pretty close in age obviously, but yeah, it's not going to work for a while. Do you have a spare bedroom that you could put a toddler bed in for Anara just for night time? If it's going to help you guys get through the night, I wouldn't stress yourself out with rooming them together, there is plenty of time for that.
Better to be sure. I am glad they are checking it out.
Thanks for the update!
You know Patrick and Denise's son Ethan just went through a sleep study. He had apnea and they just removed his tonsils and adenoids in December. I know it's not as if you need something else to go through with Anara, but at least you are not alone. I'm sure that they would share with you their experiences. :) Also, I am impressed that Vi is night training. Sophie was in diapers at night until a little over three and a half. I always worried, but everyone around here said it was pretty normal so I let it go.
Hey Amanda, I just had some time to read up on your blog and wanted to let you know that my niece had to have her tonsils removed because of sleeping, breathing, and eating problems. I know it's probably not exactly the same, but she was really thin and didn't eat much before the surgery. After having them removed she began to eat well and sleep well. So, for whatever that's worth. Hope all goes well. emily
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