Have LOTS to blog about!

To begin, it's been a busy weekend here. Friday after school my SIL and I took the kids (minus Autumn) and my cousin, Jordyn, to Fright Fest at Six Flags (pictures out of order again..i'll remember to do it right one of these days). We were there from open 6pm to close 11pm. Gage was excited to see all the people dressed up scary but he did not realize they would look as scary as they did (really was not too bad) so he was a little scared most of the time. It was a perfect night for Six Flags. The weather was perfect and it was not very busy and most rides did not even have a line. We had a great time. We did not get home until midnight though and I was in bed at 1am.

Saturday my SIL and I took all our kids to Kadee Farm in Greenville. They had face painting, pony rides, a petting zoo, jumper, hay jump, hay ride, tractor/train ride, maze, games, jeep ride, and swings. It was not glamorous but it had plenty for the kids to do and they had a good time. Autumn enjoyed watching all the activities and was able to join in swinging with the other kids. Their pumpkin selection was not that great so we bought baby pumpkins there and then went to a church pumpkin patch to pick out our larger pumpkins to carve. We were gone about 4 hours and then my SIL was so awesome and took Madison and Gage for the evening. I also had our nurse (the one we love) volenteer to come in and work saturday evening. So, James and I went to church that evening and then my friend, Brooke, invited me to her house for some baking fun. I rarely get to go out without kids so it was nice to get out of the house and just have fun. She taught me how to bake from scratch (I'm a box girl) and we made white cupcakes with strawberry frosting, red velvet cupcakes, and chocolate mint cakes. We wanted to bake more but since I did not get to her until 9:30pm and it was late we baked what we could. ;) I left her house at 1am. My nurse and I though sometimes get into talking about husbands, kids, God, etc so I was up until 3:30am talking with her. I knew I would regret it later. ;) I got 4 hours of sleep that night and yesterday could not fall asleep when I layed down for my nap. My Sunday night nurse quit her night shift so I was on nurse duty last night. I hoped to get to bed early but Autumn did not fall asleep until 10:45pm (she's been taking late evening naps) and I had to wait until she went to bed to start her breathing treatment (if we give it to her while she's awake she will dump it out). I was able to get to bed a little after 11pm, I tossed and turned all night, and then up at 6:45am this moring. I'm finally feeling my lack of sleep and so being completely unproductive today...I don't have to clean my house every week do I??? More below after the weekend pics....
So, that is the update on the weekend. Here is now the update on Autumn: Not sure what last update I gave on her vomiting. I think it was that we tried a different formula and that was a fail as well. So, here's my latest theory. I started seeing that her vomiting was increasing as her meds were increasing. I was convinced maybe it was her phenobarbitol that was causing an interaction with her meds because all of this started shortly after her second seizure and she was place on phenobarb. I can't take away her phenobarb meds though since it's a narcotic and she has to be slowly weaned from it. I decided I'd take away her reflux meds and see if we saw a difference. So Thursday evening we stopped her prevacid and zantac. Friday she spit up a little at noon and that was it. Saturday she spit up a little at her 8pm feed. Sunday she vomited 2 times (very small) after her noon feed. Well, I've noticed when we "burp" her stomach (this is where we drain some formula and air bubbles using a tube and syringe through her button) the stomach contents were more broken down than they normally are. So, I believe (could be completely wrong) that the prevacid and zantac are of course made to lower the stomach acid to prevent reflux, well...she needs that stomach acid though to break her food down and seems to me the food was not getting broken down enough and causing her to vomit. She still gags (mainly after a cough or when she needs suctioning) but since her food was not being broken down enough she was vomiting it up. I also did some research on stomach acid production and when you feel hungry or start to smell food your stomach acid begins the process (three stages of the process to breakdown food). Well, since Autumn does not feel hungry or smell food her stomach acid production does not start it's process until her formula hits her stomach (basically she's skipping stage 1). So, I feel we are maybe given her too much too soon and it takes time for the process to begin and with the added meds she was not producing the amount of stomach acid she needs to break down her food, making her sick and vomiting. We have started doing only 2 ounces at a time and waiting 15 minutes in between to see if this helps her formula to be broken down more. We still have not completely solved our issue yet but feel we may be on the right track...we have at least brought the vomiting down from 4 times a day to once a day. ;) I want to talk with the drs. about seeing if there is a formula that is easier to break down and then seeing what to do with her meds. I think she still needs a little for some reflux but not as much as she's getting since the nissen has helped stop the reflux into the esophagus and see if there is a med to help break down her food for her better or if a new formula will be enough. I could be completely wrong but at least I have a new theory to ask the drs. about.
Autumn has been doing so great off her vent and we've been trying to go from 7 hours off a day to 8 (we put her back on when she eats so if we can figure out how to stop that we can get her off even more). Her sats stay around 97-100 while off her vent and about 90% of her desats are due to her pulse ox not reading correctly. The other 10% is when she needs suctioning after she coughs or gags. She's doing great with her modified speaking valve as far as breathing but not with making noises. Every day I put a valve that has not been modified on her to help her learn to breathe out of her nose/mouth and not her trach. She struggles with it on and so it's a slow process. We've made it up to 5 mins with it on so that is good news. We are having issues with her naps though (good but annoying issues). She breaths more with her nose and mouth so the vent picks it up as there being a leak in the tubing and will alarm over and over again. So, yesterday we allowed her to sleep off her vent and she stayed at 95%..she did have 2 desats but came right back up on her own. It's thrilling to see her progress since I could not imagine what it would be like without a vent. ;) She is scheduled for a sleep study on Nov.2nd to hopefully move her vent setting WAY down. She thrilled me yesterday as well by wheeling her stander forward 3 times all by herself but she only did it once and would not do it again....stubborn child. At least I know she CAN do it if she wants.

Lastly, God has been really tugging and pulling at my heart. He's been changing my thoughts and making me understand more of His ways. I've had this ongoing struggle with faith, healing, and acceptance and trying to understand it all and how they all work together. I know this is why I've had a hard time sleeping. My thoughts are filled with excitement on what he's revealing to me and fears of where he's leading me. I've learned God just shows me a little more of Himself at a time because I can not handle or comprehend all He wants to teach me all at once. God's also been asking me to do some things in my life and I'm struggling with this. Satan is filling me with fears and doubts to where I know God is calling me. I'm in a time of prayer right now. I know what should be done but it's me not wanting to step out in faith and follow God's calling. I'm in a spiritual battle. It's one of those things that when you finally start to get how God works you know that He's going to ask you to give up more than you want. Am I ready for that? Not sure so that is why I'm in this time of prayer. I'll share more of what God has revealed to me once I can figure out how to put into words without being confusing and all over the place and the excitement I have in another blog post. I'll share the spiritual battle once my stubbornness gets broken down by God's tender requests...I know He's going to win in the end but I'm fighting to see how long I can stall His request and try to convince Him otherwise. Yes, even I laugh at myself.