On another note E has tolerated full feedings for about a week now. We are so thankful. We have so many people praying for her and we know that is helping. We also started taking her to the chiropractor. It's working great! She is able to use the bathroom every time she goes and since she's gone is when she's gone back to full feedings. She is slowly starting to gain again and we are so thankful. The medication along with the chiropractor and the prayers are doing their job :)
We probably still will go ahead with the J tube in January just as a precaution. Because this will happen again and may start to get more often. We don't want to get stuck in the hospital because she gets so sick and THEN do it. Rather be proactive.
We still haven't tried the Reglan. The Erythromycin seems to be working well but usually only works for 3 weeks and then you need a month or so off. She's almost to 3 weeks so I'm not sure what we do on the "off" times. Maybe start the Reglan?
Also we found out the doc wants to do some more invasive testing that will require an inpatient stay. I guess it tests the motility of her intestines and colon. It doesn't sound pleasant. He said he doesn't want to do it now but put her on the waiting list. I guess there are like 75 people on the list so it would be a LONG time before she's up and the doc said he'll decide then based on how she's doing.
She's doing great in school. Her conferences went good and she's at grade level or above it seems with her intelligence. A far cry from last year and the year before when she was so beyond delayed it made me cry. They think she will have no problems attending her school the rest of her career.
They also agreed to help in any way they can with her feedings there if she is put on daytime feeds. They can't do a huge amount but will do what they can. She started her medication there and I'm thankful she can take it there. Another thumbs up to that great school! They are SO accommodating. Most Catholic schools will not take autistic children, let alone autistic children with health problems and feeding tubes. They've done nothing but bend over backward for us. I will never take her schooling for granted.
Last night was her Christmas concert and she did great. Sang her little heart out. Even picked her nose like a true 5 year old :) Sophia is loving school as well and is now on Christmas Vacation. Except she thinks that means she is going on vacation :) She is super excited to go to "real" school next year. I know she'll love it
Joey is getting bigger too. We finally at 10 months have our first tooth! He can say hi, all done, mama, dada, baba, nana, and I think that's it. He signs about 3 sign language words, can pull up, take steps, crawl and is into everything. It's so funny having a boy. He is WAY more work than the girls were. He is just 100% active all the time and into everything. He is 100% boy :) We love our little JJ beyond words. He is a miracle and we are so thankful for him. I can't imagine life without him. While I would love future children of any sex, I'd also love to have another baby boy :)
Being back in the ER has been interesting but I think the transition went smoothly. The extra money is nice :) Patrick is getting ready for paramedic school in fall which I am not looking forward to. I guess it's not a very fun year. Thank goodness both girls will be in school full time and I'll only have JJ. Not sure how exactly I'm supposed to work and all that but we'll figure it out at that time.
Other than that we are just getting ready for Christmas. It's the first year the girls really get it and it's very fun to watch. Joey just likes to eat the tree :)
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