I really should be in the bed right now. However, this afternoon I was so tired and my head was killing me that I decided to take a nap. My one hour nap turned in to a 4 hour nap. The alarm apparently was going off and I was aware of it because my phone was buried up underneath me. Don't worry (Dee), MJ wasn't roaming the house unsupervised...my mom offered to watch MJ so I could rest. Needless to say, if I take any kind of nap it screws me over at night. I won't sleep for a while yet. Oh-well. It is quiet, I'm the only one awake and its my only time during the day usually to unwind, straighten the house, and watch a little tv BY MYSELF. I have a myspace page as well that I used to blog on all of the time, especially the past 2 years. It was sort of like therapy for me. I prefer facebook these days for whatever reason. I miss blogging though so you may start seeing more notes from me. Most of the time, they are just me venting about something or ranting and raving over something, doing a random pointless survey, or killing time. (like tonight!) I don't expect or care if you read all of my notes. They are beneficial for me : ) Today I had to go to my ACLS class. I always dread these for some reason. Perhaps it is the very bad actors on the very long videos, the sitting in a classroom for 8 hours listening to a nurse teach you that you don't really care for, or the thought that what you are taught is pretty much not done in the ICU code setting. Who knows. Its a requirement for me if I want to be a float charge nurse or be a part of the MRT program so I suck it up every two years so I can continue on my merry way. One thing I was thinking about during the class was CPR outside of the hospital setting. I'm not one of the people that carries emergency resuscitation supplies with me. If I were say at Target and someone collapsed, would I do mouth to mouth? Yuck. Probably not? Not on a stranger. However, if it were my close friends and family I would in a heartbeat. Does that make me a horrible person? Thankfully, the new guidelines emphasize chest compressions without the rescue breaths (outside hospital setting etc) so my conscience will be clear if I ever encounter my "Annie" in the store. I am so excited about tomorrow and the next 5 days. I am going to drive to Knoxville to see one of my best friends, Sarah. We have some fun activities planned for our bambinos (she has a little boy Flynn, that is a few months younger than MJ....they have a prearranged wedding in about 20 years) such as a pumpkin patch etc. Hopefully I will get some decent pictures to post! We will hopefully have time to go to Pigeon Forge and Gatlinburg to do some Christmas shopping as well...I love it up there at this time of year, it is so pretty with the leaves changing colors and the cool crisp air. I've gotta go to the UT bookstore as well and get some Lady Volunteers stuff for me and my sis. We are big fans of the Lady Vols basketball team. I can't wait for the season to start up!!! Macy Jane still has a snotty nose and a cough, but shes back to her old self playing non stop and making every musical toy go off continuously and at the same time. She is doing ok with sleeping in her own bed all night. She slept with me in the guest room a few nights at the beginning of the week because she was so sick, but the past few nights she's slept in her bed all night, only waking up twice, but putting herself back to sleep after a few whimpers. She really is such a good baby. Even when she is sick and puking, she is still so sweet and loving....doesn't cry too much! Just like her mommy ; ) (dont choke)Oh yeah! Speaking of MJ. This was actually my point in writing tonight, I almost forgot it!! Macy Jane has been going to speech therapy, occupational therapy, and physical therapy on Tuesday & Thursday each week at Methodist North. She hates it for whatever reason. I don't know if it is because she knows it is a hospital, because they make her do things she doesn't want to, its outside her normal environment, or a combo of all 3 and then some. She usually screams and cries. We really wanted her in LeBonheur's LEAD program, but they were full and had a massive waiting list. Thankfully, our early interventionist was able to pull some strings and got Macy Jane speech therapy through LEAD. The best news is that they come to our house!! The first meeting was Wednesday. The lady walked in our door, took her shoes off, and immediately got down in the floor and was bubbly and cheerful. She acted like she had known us for years and we were best friends. This approach helped MJ so much. Macy Jane almost immediately crawled right to her and reached her arms out for Jennifer to pick her up! I was shocked. Happy, but shocked. She asked me a zillion questions about MJ and said she knew the perfect plan for Macy Jane. Plan? A therapist with a plan and goals? I was shocked. At North, they all pretty much just play with her and that really aggravated me. I understand play therapy is important, but the speech therapy was not addressing Macy Janes feeding issues at all, which is one of her biggest problems. They were more focused on her language skills and sign language. But, we had to do what we had to do at the time. Anyways, MJ's oral feeding aversion goes way beyond just not knowing that food is supposed to fill you up. It has to do with sensory issues mostly. Apparently there is a feeding program called SOS that starts at the very beginning of the eating process. Most people think eating consists of getting the food in your mouth, chewing, and swallowing. In kids like MJ it is a big huge 30+ something sensory process. This program starts at the beginning which is the smell of food and the sight of food. I made a list of the foods that MJ does tolerate on her plate and will taste. They were all pretty much neutral in color, with the exception of sweet potatoes & Cheese Puffs, and had smooth textures. The first step is to get Macy Jane to be comfortable with several different colors on her plate and different textures. Comfortable meaning she an tolerate them being on her plate without her immediately either ignoring it or throwing it on the floor. I know it sounds crazy, but its true. If she sees something like ham or turkey for instance, she will take her index finger and barely touch it, then make a god awful face and throw it on the floor. Interesting to me and baffling all at the same time.I am completely having to change MJ's feeding routine to start this new program. She typically eats by feeding pump through her g-tube at 10am, 4pm, 10pm, and 4am over a ten-twenty minute time period and does this while playing, sleeping, riding in the car, etc. Now, I have to sit her in her highchair at least 3 times a day at normal meal times. The first ten minutes, I am supposed to put a different variety of foods on her tray and play with them with her, and slowly add new foods, colors, textures. The next ten minutes, I am supposed to start her tube feedings. The goal is that she will start to associate highchair with food and mealtime and her belly getting full all while watching me eat. (that's not a problem ;) Because of this, I am changing the hours that I work so that the majority of the time I can be there for MJ's meals and really get started on this aspect until it is a normal routine for MJ and my mom can do it when I'm not here. For some reason, this is one thing that I would love to see MJ conquer. It doesn't embarass me that she has a g-tube or that she can't eat like most kids. Most people stare at me in the store when she is receiving a feeding and I just smile and keep walking. A few people have come up to me and asked me about it, which is what I would prefer rather than them gawking at her. it isn't about me, its about MJ. I know that once she is school age it would benefit her greatly to not have something for kids to make fun of her for or for her to even have to worry about being different than everyone else. Kids are mean these days and I can't protect her from everything and will not try to, but this is something that I can do to help her. If it means me losing sleep, working crazy hours, or having to give up some of my pleasures so I can be with her, I'll do it in a heartbeat. Keep your fingers crossed that this new program will work. It isn't an overnight solution to her aversion. Our goal, according to the ST, is for MJ to be eating 100% orally by the age of 3 and to be caught up with her language skills by the age of 4. Lots of work ahead of us, but I love a good challenge and will do my best to help her! I guess this note turned out to be a novel, which happens quite frequently. If you read the whole thing, kudos to you :) I hope that everyone has a great weekend. Much Love, Bethany Jane