An update

Okay, we need a new computer because ours keeps crashing on us and it takes for ever to load pictures so that is why I have not been posting much lately...so frustrating!

Anyways, I thought I'd give an update on what has been going on in our lives since school has started. I feel busy all the time and not sure what is getting accomplished. ;) I had this idea that when school started I'd have these long days to get so much done and spend all this extra time with Autumn. I'd be all rested with a clean house by the time the kids got home but that has not happened yet. I've picked up a couple of house cleaning jobs just to make me some money to get to shop with. ;) I have a shopping partner now, my SIL, so I need some money to shop with. So, since school has started I feel like all I've done is clean houses and I'm exhausted by the end of the day. I've also had errands to run as well and doing the normal Autumn things daily like dr. appts, therapy, medical stuff and dealing with unrealiable nurses. It's also the first year to have 2 kids in school so our evenings feel short by the time we do dinner, homework, baths, reading/devotional time. Thankfully James has really stepped up and has been helping out where I need him to by doing the yardwork, dishes, and picking up the house at night. He even went grocery shopping for me this week which can be scary since he LOVES to just buy whatever but he stayed within budget so I may send him more often. ;) By the end of the day I just feel so drained. This summer I started eating better and working out but now I can not find the time to get a work out in so I know my body is feeling more run down without the exercise and my poor dog has not been on a walk in about 3 weeks. :(

Madison is doing great in school as always. She's enjoying it as much as you can "enjoy" school. ;) She has some great friends so that helps. I have found a negative to having my kids each 5 years apart. Madison now wants to go out every Friday night and most of the fun kid things they have around here last until 11pm-12am so that makes it hard on me to pick her up so late and then getting up early with Autumn. I'm glad though there is so much for her to do here...Friday and some Saturdays they have open gym at ASI gymnastics, every Friday night they have Planet kids where they can go hang out and do fun things, she's got church activities as well on some weekends and they also have Family Fun night for the community every Friday to meet at parks and hang out and then watch a movie on the big screen for free.

Gage is doing pretty good. We had open house the other week and his teacher said he is a hoot and likes to talk alot. We noticed he did not have very many goodwork stickers so we had a talk with him about trying to do better with his schoolwork. He just wants to be the first one done (everything is a competition to him) so he does not do his work correctly. He's getting better now though. Their open house was different than I am use to. No kids were to go and it was 2 hours long. Parents would pick 3 out of 6 classes to attend which were 30 mins each and then the last 30 mins would be a time to meet with the teachers. It amazed me how many parents were there....this is a completely different type of school district than we are use to. It is amazing!!! I never realized just how much my kids were missing out on until we came to a better school district. There is just so many more opportunites for the kids here and so many more parents actually care about their kids futures and then teachers are so excited about wanting to see every kid succeed...they do not teach to the TAKS tests but actually teach the subject. ;) I'm not saying Midland was bad but there is a huge difference. We moved here to give Autumn a better chance with medical care but it is also giving all 3 kids a better education as well. They also have this awesome computer system and every grade, absent, tardy, nurse visit, etc. is recorded into the system and you can go on the site daily and check out exactly what your kid is doing, what papers are not being turned in, what classes they are ditching, what concepts they are struggling with, etc. Kids can not get away with anything here....great to have once they are in middle and high school. ;)

James is still just working hard EVERY weekend for us and making some overtime money as well. He gets to play golf weekly which he loves. He also going to man church on Wednesdays while Madison goes to youth. We also visited a new life group (without Autumn) last week and we loved it. Can not wait to start getting to know the people and making more friends.

Autumn has started her vomiting again. So, we have been in contact with the Scottish Rite SB team about what may be going on. I feel she may need a different formula or med or maybe her nissen has come undone. BUT we have to start with ALL the tests first. First they had us fix her bowel program so that constipation would not contribute to her bloating and causing her acid reflux to be worse. Check. Then last week they had us come up to do bloodwork. They thought maybe she had H-Pyloris which is an intestinal bacteria that would cause ulcers and vomiting issues. Check and the results were negative. Next week they want to do another upper GI to see if she has any obstructions or if the nissen has come undone. If that is fine as well then we will start exploring new formula and/or meds. I'm just ready to get this figured out because I'm so sick of seeing her gag and vomit.

We can see that Autumn is about to be 2 though because she is EVERYWHERE!!! She's pulling herself around a lot faster and into more rooms in the house more and getting into stuff (guess I need to childproof soon). She is also throwing fits if you do not pay attention to her which makes my day more difficult. It's not like I can let her cry and throw a tantrum like I would a normal 2 year old....if Autumn gets mad, Autumn turns blue so I have to give in to her commands. She still has not figured out how to roll herself in her standers yet but understands when I say "ready,set, go" to grab the wheels and move back and forth. She has worked up to tolerating it for 30 mins now before getting tired. She also has octopus arms and reaches for everything and she's fast. This has made trach care and dressing her more frustrating since she wants to throw everything out of the crib as soon as you lay it beside her. She likes to "help" with trach care as well. She holds and grabs the Q-tips for me and then tries to help pull off the ties when I'm trying to put them on. She thinks all if it is so funny as well. She's doing much better at sitting up on her own (can use only one arm down at times) and pushing herself from laying down to sitting up with ease now. I've been trying to make it a goal to work on a new signing word with her weekly. She HATES to learn signs. Everytime I try to teach her she covers her eyes and doesn't want to pay attention. She really will only sign mommy, daddy, and bath. Last week she picked up milk and will do it now. This week I've been working on thank you and please and trying to show her she can put 2 signs together to say something. She's getting a little better at wanting to do it. This evening we were playing with her and I told her to sign thank you, daddy and did it for her and then she attempted to do it and then clapped for herself....everything ends with her clapping for herself. She also was putting her hand to her cheek and waving so I'm not sure if that is a sign she learned on one of her videos or if she was just being silly. I really need to get better at just signing all the words I say to her so she can start to pick them up. I just have so much to always to be doing and thinking about therapy wise that I've dropped the ball on signing as much as I should. I've also decided to tackle and be consistent with feeding her by mouth this week. Monday I was able to use a spoon to feed her instead of just my finger to her lips with the baby food and yesterday I was able to feed her even more with the spoon. I've learned if I do it during Elmo's World she pays more attention to the TV and does not realize she has food in her mouth. She gags a little and spits some out but she also gets some in her mouth as well. Right now I'm just trying to teach her that food is her friend and will not hurt her. ;)

So, she will be 2 in just 12 days. I can not believe it's been 2 years. The older she gets the more I can see she is behind developmentally . When we first learned she has SB we assumed she would have normal intelligence (like many SB kids are) and only be behind physically. After though all she has been through she is both cognitively and physically behind. I thought this would bother me with seeing lots of other SB kids her age and younger doing so much more but it has not. I see Autumn for what she's accomplished and I'm so proud of her. I've stopped comparing her and I've learned to accept her. She may never be able to be in a "normal" class at school or she could catch up one day (I'm not sure) but either way I know she works hard for every little, single thing she can do. Her spirit and determination still amazes me daily. Gosh, I love that girl!!!