Julia is doing incredibly well lately, but had some troubles over the winter. She was having terrible wretching episodes every time she had a bowel movement. Trying to figure out the underlying cause for these episodes was difficult. In the beginning she had a fever, so we just assumed she had a stomach bug. But when it continued, we suspected something else. Her GI doctor did an xray of her tummy and found that she had a lot of stool in her intestines. They had me give her some pretty hefty doses of Miralax over a 6 hour period of time to clear her out. Boy was that fun : / But it did seem to help her. She was having terrible constipation even though we gave her Miralax daily to help keep her regular. When she was suffering with this terrible wretching, we were stopping her feedings of Pediasure and giving her Pedialyte. Then she would be fine. The GI doctor also switched her to Pediasure Peptide which is supposed to be easier on the stomach. She had lost about 3 pounds during this time period. But now that she is doing well on the Peptide formula, along with giving her more Miralax daily, she has gained the weight back. At her last doctor's visit they said she looked great, had put all the weight back on, and grown another inch in length. She is in 4T clothes now! That's pretty good for a 5 year old, who only a little over a year ago was in 18 mo. clothes and 15 1/2 pounds.
In the beginning of April we had her evaluated by a feeding clinic, physical therapy, occupational therapy, and speech. There is a long wait (like 6-9 mo.) for the feeding clinic and they said that there is no physical reason for her to eat orally. She really does NOT do well with anything we give her orally. Not only does she have trouble, but she really does not like it. She gets very upset if you push it too hard. So we have her on the waiting list and will decided what to do when the time comes. She has her first PT appointment on July 2. Both the PT and OT therapists said they can't wait to get Julia into the clinic. They think she has a lot of potential. So we are excited to start that soon!
One other problem we had been having with Julia is her inability to fall asleep at bedtime. We would get her ready for bed and put her in her crib and she would spend 3 or 4 hours squealing and screaming in delight before finally zonking. One problem with this is Julia shares a room with our 4 year old daughter Regan. And Marina will be joining the girls in this room when she comes home. Julia will be keeping them up every night. We tried turning off the night light (even though Regan did not like this) to make it completely dark in the room and took all toys out of her crib. It didn't matter one bit. She still happily ranted at the top of her lungs. I know, its a good problem, right? But it also seemed to be difficult to get Julia up and going in the morning. Likely because she wasn't actually falling asleep until around 11 pm, even if we put her to bed at 8. I did some research and read that some children with neurological disorders can't fall asleep at night because their brain doesn't make a certain neurohormone that puts you into sleep. So we tried giving her a low dose of liquid Melatonin right at the end of her last feeding for the day. And it worked. We get her into her crib with lights out within a half an hour of giving her the Melatonin and she falls asleep very quickly. And stays asleep : )
Overall, she is now in a very good routine. Feedings are very regular, she is passing bowel movements with ease, she is happy almost all the time, she loves her toys and her playpen and she continues to grow, gain weight, and get stronger all the time. What more could we ask for? She is such a sweet little girl and we are so blessed to be her family.