Present

I know 4 posts in one day.....I should get a real job! Heehee This one is it cuz I'm heading to bed!

I got an idea from another kiddo I follow (thanks Heather) for a gift for Danny. I would like to start up a scrapbook of his friends, family, and followers. Something I could put together and be able to read and show him whenever. So if you'd like to participate in this gift please send me a picture and comments that I could add with it. You can email me them or send me an email and I can give you my address (if you don't have it). I will be a great project for me when we are in the hospital too :) You know me always have to be busy!!

Here a some pictures of us making cookies! YUM!! I love this season so much good food and baking.


It is alittle weird here to see wreathes and holiday decorations when the weather is so nice. I'm used to freezing when that stuff goes up. I'm sure when I get home to Wisconsin to put up the decorations I will be FREEZING. Usually the day and weekend after Thanksgiving I get all my holiday decorations up. So I will be late as I won't be able to put them up till about Dec 8th. I will have alot to do with decoration, preparing the house for recovery (putting Danny's bedroom in the living room), surgies, and then finishing my shopping. I am pretty much done (even wrapped, yeap that's my OCD, LOL) just a few odds and ends.

Good Day

Good morning ~ this morning was definitely a better one then yesterday!! Danny slept well. I had him sleep in a more up right position and that did the trick. So I am leaning towards his issues being reflux. He just seems to be iffy when feeding him now. I did talk with Dr Kasper yesterday and if it continues he will have an upper GI done on Danny with contrast to see if the nissen is failing. Danny had his nissen done when he was 6 months old so it could just be failing. He did good all day yesterday and was even smiling and participating in therapy
Yesterday Danny had a GREAT day even despite the lack of sleep. Sorry I didn't post later yesterday but I was drained..emotionally and physically. I was SOOOO tired! But on the good side...I am so excited! Assistive tech came out along with the teacher and speech yesterday and may I just say.... WOW! My son was using a computer, yeap you heard me, a computer. I was just amazed. Assisted tech brought out a couple things for him that they wanted to see what he could do with them. They brought out the microlite switch that Danny did so WONDERFULLY with this spring when we were here and again it WORKED! They are positioning it in his fore finger and thumb and Danny needs to squeeze it with those fingers. Again much to MY surprise he responded GREAT, right away. They also tried to position it on hit tummy and then his hand/arm will push up against it. In this position too it WORKED so we are on a mission now to see what is the best placement for Danny that will give him to best consistency. Danny always AMAZES me! So the therapist put some games on the computer that Danny can play with an adapted mouse that this microlite switch can hook into. I can't believe I am even typing this or that I saw him do it....WOW it brought tears to my eyes! I am going to have to look into getting him is own mouse and switch....that's how GREAT he did. They also brought out a switch toy that is a dinosaur and boy when activated did it bring a BIG smile to Danny's face. Danny did GREAT, I am still in awe today! WAY TO GO!! They were even discussing a communicative program/device that he could use if we find that consistant spot for Danny. I can't imagine...Danny being able to "tell" me what he wants. I'm just shaking with excitement! To be moving forward towards a way for him to communicate with me, words can't even express how ELATED I am. Thank you Ms. Nancy, Ms. Kathy, Ms. Carole, and Ms. Mary for giving my son a chance at a better life! Next time I come down in the spring the assitive tech therapist extended an invite for me to come down to her "lab" and she will show me how to do some of the power points on the computer that Danny can do. I will be taking up that offer!! I also have GREAT neighbors in Wisconsin that are computer wiz's so maybe we can figure it out together, watch out Lynn & Tom, this momma is on a mission, heehee. For him to be able to play on the computer just opens up a whole new world...I am excited! So Ms. Mary and Mr Scott can you look into some of this for when we get back into WI as this is something he can do during recovery from surgery. I am going to look at it more here.....but for all of you interested the games they used here is from RJ Cooper company and it was called, I believe, Early and Advanced Learning. I think the games/programs need to be bought, but so worth it! Then Ms Nancy said she makes up some of her own with power point that she is going to show me next time :). This is another great site it's not designed for kiddos like Danny, but some of the games he can play with his switch, YAY, www.Starfall.com. Avrianna LOVED playing on it!
We went over to Grandma's yesterday too and had a blast making cookies. It is so wonderful to see this family tradition so strong and to making WONDERFUL memories. It just brought tears to my eyes....(Yeap I was an emotional wreck yesterday) As I know some people don't even know their grandparents and for us to have Great Great Grandparents around is great!
Today we are heading off to the Disney on Ice show and we are SOOOO excited. Luckily we have an entertainment arena only 10 miles away from us so I try to get there at least once when down here do to the convenient location. We are leaving here to go shortly so I will post pictures when we get home....promise this time, so check back later too :)

Up Early

Long morning for us already .... Danny has been up whining, tummy noises, and what seems as refluxing since just before 4am. He has been having this hard swallowing episode and facial expression when I feed him during the day (2oz bolus every 1.5hr) now last night he was doing the same thing on the feeding pump and woke himself up!! So not sure what's going on. Is it just a tummy bug thing as this never happen before or is the reflux issue getting worse? (He has the nissen to prevent more reflux but thinking it is starting to leak)....we will see what tomorrow morning brings. I crushed up a TUMS and stopped his feeding around 4:30 and he got alil better. ????? TUMS sucks to give through a Gtube...I'm not sure I can do that, but did. He was making tummy noises and pulling his legs up too so....... could be a bug... I gave him an enema to see if he was having issues with that end but all that came out was air and just alil spot. That's my excitement for the day so far, LOL.
Avrianna is going to Grandma's today to make some Thanksgiving/Christmas cut out cookies...she probably won't be able to participate in the annual cookie baking at Grandma's house because of the surgery so Grandma is going to do alil batch with her today. Avrianna LOVES making cookies with Grandma.
Last night the kids and I went to Grandma's for a dinner party that she was having. It was a great time. Everyone was so into taking about my kids....right up my alley, LOL!!
Well need to get going and get the kids in the tub and give myself a cold shower to WAKE UP! 4 people due here around 1 for Danny's therapy today and I am DRAGGN butt! Emailed already and going to call the doc to get his opinion on Danny too. I will let you know later how the day is going. If this IS a bug....GOD I hope Avrianna doesn't get it!