Surgery and School

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So our little Ladybug is going to get a GJ tube. I am equal parts super excited and freaking out. I'm excited because our little girl will be able to get and keep nutrition in her tiny body. She's lost 2 pounds since she's come to us. She's down to 23.2 pounds, she'll be three in two weeks. She's so bitty 18 month pants fit her. I cannot wait to see her plump up and be healthy. Now for the freaking out part. I have never dealt with any kids of medical need like this. The closest thing was Shane's leg braces he had for his first three months. But there was no tube, no chance of anything pulling out. I'm scared to death. I'm concerned that though they said she'll be able to eat and drink by mouth that if she does her puking will continue. She's OCD about her cup, I can't imagine taking it away from her. I am trying to picture my tiny stumbling princess with this sensitive device, oh and the unruly two year old tornado that lives here. She'll have to stay in the hospital overnight, and hopefully go home the next day. We've been told we'll get a crash course in tube feeding while we are there. I may have to take a camcorder to remember it all.

On the shallow upside, I can shop for cute GJ coverings and wraps. I think we're going to have to go with the wrap at first since it will keep her hands off of it and those of said tornado.

We are still being referred to Kennedy in Baltimore. They don't work with VA medicaid, but now that she's on our insurance they will cover her. The therapist up there are supposed to be able to help with cognitive training. Her throwing up stems from brain damage. It's a physiological disorder called Rumination. It's essentially what a cow does. Since there is nothing 'wrong' with her insides, they are hopeful that retraining her will make it stop. That is my dream. That the tube can come out and she can enjoy food and drink without pain. And without vomit.

There's also hope that the surgery will help control her seizures as well. She has Lennox-Gastout Syndrome, meaning her seizures are never the same "type". They are always changing. However, I have noticed and recorded a direct connection between seizure activity and throwing up. The worse her rumination is, the more likely she is to have a seizure or multiple seizure that day.

We went to school today. I have signed more papers for her preschool than I did buying a home. Seriously. There's a meeting for everything and you have to sign dozens of papers for each one. I love these ladies, I really think Carlee is going to benefit greatly from this school. She had her IEP today. We discussed her goals for the school year. They want her progressed three months from where she is now. That includes, drinking from a real cup, washing hands with assistance, tracking an object across the room, responding to her name when called, communicate (whether by sign, machine, button, or tablet, and playing and initiating peek-a-boo. It looks sad when I type that. She's nearly three and those are her goals for the year, when she'll be nearly four. If she can accomplish these goals, I would be over the moon. I think once she doesn't have to throw up every five minutes (literally) she'll be able to concentrate on other things, like waving hello. I am thinking positive. For the first few months she'll be going for one hour a week, with in home help as well. They have her progressing up to four days a week for 2.5 hours a day. We'll take it slow, though. For someone who hasn't dealt with the school system, I am pleasantly surprised. I'm also looking forward to meeting other special needs mothers of preschoolers.

As for my big boys. We're nearly done with this school year. We will be testing next week and sticking a fork in it. The new year will start after Carlee's surgery. Probably around the third week in July. I found a new website called Easy Peasey Homeschool. I can't imagine the amount of work that went into this website. And it's free!!!!! It has the days all planned out. The only thing we're not using is their math program. I love the program we have now. I've printed out all our legal stuff for the year and the first month of our year. I'm excited to get started. Much of the work can be done independently on the computer, so I'm looking forward to that as well.