Today Eli had an appt with his GI doc. She's a mess. She couldn't figure out his meds or his feeds, and she kept telling me over and over that everything is motility and she doesn't know what to do. She says "He has full GI motility, esophagus, stomach, and intestines". NO KIDDING. We've already figured that out. She is referring him to Dallas or Denver. Our choice. We are going to have to do some major travelling to get this all figured out. Calls into everyone. Records being faxed all over the place. As of right now Eli is on 20hrs of feeds, with 4hrs off, that we are doing 1hr at a time. Still have the continual drainage. We had hoped to maybe get rid of that, but then the other day he had alot of bile, so not so sure we are ready to try without. We don't know anything on the new med yet, but that's to be expected. Tomorrow his GI is having him go to the hospital for a modified upper GI. They are going to put barium into his GTube this time and see if they can get a good look at the fundo area and how well it's holding up. Unfortunately for Eli he has to have his feeds turned off 4hrs before the test. So he won't get any additional play time off the pump tomorrow. Eli is starting to roll alot. He can get himself around a bit. He's also getting onto his hands and slightly onto his knees for a few seconds and I'm just waiting for the moment he figures out he can move like this. Not sure how that will work with the drain and tubes and pumps and such but we'll see how it goes.
Emily is currently frustrated with school as they've started a new math program, and it's going way slower than she would like. It's slow because they are required to work thru it as a class, so she isn't allowed to work ahead. This is causing her not to have time to get her accelerated work done apparently. She's quite annoyed. We told her we would contact her teacher and find out what the options are.
Jace is doing ok. We had his IEP meeting at the end of last week and got alot accomplished. He will have speech twice a week, and they are having someone come in and work on his handwriting daily. Also he is having the tests read to him, instead of him having to read it and struggle thru. He's able to do alot of the answering of the questions outloud as well. Obviously this isn't how they do his reading comprehension tests, but for everything else.
Ben is ben. He was in quite the mood today when he got home from school. Respite took him outside and that seemed to help calm him, although he wasn't interested in dinner. He had his bath and hopefully will settle for bed quickly. He was able to show his teacher the child that was abusing him, and apparently Ben wasn't the only child this was happening to, although it seems he was the only one to come home with bruises. The teachers are keeping a close eye, and so far all seems good.
Ari is good. She's busy as always. She's the social butterfly of the house and is always moving and always talking. Eli finds her fairly entertaining but he tires of her quickly. Sadly for him, he's the only kid around all the time, so she showers him with attention. She loves when everyone gets home from school and they can all head outside to play with the neighbors.
Bob is back to work. He started 1st shift as of sunday. They were FINALLY able to get his scheduale accomodation done. It's definitely been a change having him gone, and especially during the day, but it's been so much better in the evening to have 2 adults to get things done with Eli and the other 4.
Tomorrow is my next sono. Hoping for some answers, but not holding my breath for good news. I'm assuming that the cysts haven't gone away. I'm just trying not to worry about it and wait and see what the doc says. They changed around some of my meds, but so far no change.
Will update more soon. I try to keep up with the updates but time just slips away!
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