Hair Cut

So here's my lil princess with her new hair cut. She likes it!She wanted it shorter in the back and longer in the front...she must have seen one of the girls at the pool with the style. I did my best!! Not sure if I like it, but we'll see. Like I say it's only hair it'll grow back.Danny is still congested and today he was breathing so fast you would swear he was running a marathon. I tried to download another video of him breathing but the computer dropped off line losing the download, but you get the picture. I think I'm going to give him a hair cut tomorrow. I WILL remember to put the guard on this time....PROMISE! LOL

Today Danny had Speech therapy and he did pretty good for being ill. We discussed the possibility of using a Tech/Talk 8 device with Danny in aiding him with his communication. This device will scan over 4 to 8 items....telling him what they are and when it gets to what he wants, Danny has to activate his switch so it stops scanning and that will tell us what he decided. I'm super excited about it. We'll see if they have one we can try.

Tomorrow we go out for PT at Kidspirit. I can't wait he NEEDS to be stretched out something fierce, sorry Ms. Becky you will have your work cut out for you. Then Wednesday the Assistive tech lady is coming to show me how to do some fun thing with Danny on the computer and discuss the possibility of some new switches to try with him. I will let you know what comes of that.

Today Danny's lil butt started getting so sore. So now not only is he having respiratory crap his butt is red. I loaded it with cream....I hope it works. I'm not sure if his skin has had enough of the wiping cuz of the antibiotic runs or if it's that acidic now. Where ever the mess hits his skin it's now red, instantly. Poor thing! I just want him to feel better and SOON! My mom is going to be flying down the end of the month so if he's not 100% you can bet she'll try to whip him into shape, heehee. NOT ~ she'll just cuddle with him and tell ME WHAT to do, LOL. Boy I GOT to get this boy better before she gets here.

Thanks for following our story. Take a few and drop us a line to let us know you stopped by. The kids love it when I read them your posts too!

Senior Moment

This evening I gave Danny and hair cut, bath, and a new G-tube. But I have realized that after a long day NOT to take on too much in the evening as the Senior Moments happen.....hence to "new" hair do (ok Erin can you fix this one, LOL)

This is what happens when you are trimming his neck line and then forgetting to put the attachment BACK ON when cutting the hair, argh! As I'm cussing myself out Danny is laughing, figures. If it wasn't so darn cold out (but we hit 35 today, this is the first day in 34 days to hit above freezing....it's a heat wave, NOT) I'd shave the whole back and let it grow in together. THANK GOD it happened in the back of his head and no one will really know (except me!). Of course I have an artist coming over on Monday to take close up shots of the kids for life like statues I'm having made of them for in the new house. It's a good thing it's in the back....so sorry buddy. As you can see even after the hair cut his hair is still very thick (except in that spot) and wavy so I'm hoping it will camouflage it more. I'm so glad the bath and the new G-tube (I replace his every 3 months) went better then the hair cut. It's not that I did anything really tiring today but I did get alot done.

I had a visit with another mother in the Valley that has a special needs child and two "normal" children. She was here for a good part of the afternoon and it was GREAT! So nice to talk to others that "get it" and be able to share our son's milestones ie: holding a head up for a few seconds, no seizures, hitting a switch to activate a toy. You don't know how many times I can tell someone that Danny held his head up for 10 seconds by himself.....and then get the look as if yeah he's five and it was just 10 seconds. They don't get it!!! She too is building a new home so we shared ideas about the accessibility for our boys(yes our current home is still for sale, check out the link to the left in Our Stories for info). It was wonderful to see how they interact together. Another bond and friendship I hope to continue for many years to come. Thanks again for coming over.

After they left I finished making the Superbowl goodies. It's just going to be us but thought it would be nice to have our own mini Superbowl party. We are not BIG football fans but you have to watch the Superbowl for the commercials, right? Tomorrow morning Danny and I are going to take a ride to the new house and take some pictures of the progress there, then off to my aunt's house for lunch. There we are having a birthday party for my niece and mom (aka Nanny). Dan and Avrianna should be home before the kick off .... if not more for me to eat, heehee. I made taco dip, ham rolls, beer bread and spinach dip, subs, and I have strawberries, kiwi, & blueberries so Avrianna will be totally excited about that....she is a fruit fly!

I am also going to surprise Avrianna when she gets home ..... I signed her up for Gymnastics again once we get back down to Florida....she is going to flip, REALLY. I took her out of Gymnastics last year because of her spleen being enlarged and with her on the bars, climbing ropes and such I knew that we were farting around with danger....so now that her spleen is out and that she has ALL this EXTRA energy, Go Baby GO!

Have a great Superbowl Day and be Safe! Take care

ER visit ~ 2nd post of the Day

Yes I was at the Theda Clark Hospital ER today, not for any of my family members (per say) but for my extended family......Danny's Speech therapist! OH NO!! What we do for fun around here, LOL, NOT! Ms Maria slipped in our driveway when she got here and instead of catching herself with her body, arms, hands, hip, anything else then what she did..........HER NOSE! Yeap her face took the hit and broke right there in the driveway. I feel terrible!! She came into the house for just enough time to regroup and then I took her to the ER as she had a pretty large cut down her nose and it was evident it was broken as it was swelling and bruising right before my eyes, YIKES!! Danny hopes you are feeling better soon Ms Maria and Avrianna really hopes you are OK. Please let us know how you are doing! If I was smart enough I would have grabbed the camera and took a picture to post but I didn't get one, you're safe Ms Maria, LOL. Since Danny's been back on the schedule with therapy he hasn't done so well with it as things just seem to happen on therapy day.

I got a ride home as I drove Ms Maria to the ER and to her house in her vehicle. When I got home Avrianna was eating and ready to go to her Theatre class.....in a new outfit......FYI don't let the pages of those cool Explosion books from crayola (the black pages that turn funky colors with the special marker) get wet. I guess Avrianna did and then the pages bled all over her. Dan said she looked like a Smurf (remember them). He got her all cleaned up and ready to go so no worries. She is so excited for Theatre class as at the end of the session they are doing a play. I can't wait to see her....she is such a drama queen. This is what happens when a 6 year old girl gets bored.......Our family dog Bailey

Take care and stay warm! Now I hear negative 25 without the windchill on Thursday. Yeah, now my long hair is gone, NUTS I know, but it's only hair it'll grow back. Much to my surprise though Dan informed me he REALLY LIKES my hair this way and maybe I shouldn't grow it out, WHAT? Total surprise to me as he LOVED the long hair look. Good work, Erin!! Works for me, I just go with the flow.

Check out Cameron's site his brain surgery went well and on the road to his 2nd surgery in a few days. We're thinking of you Buddy!

News

Today I received the article that Previa Health did on Danny since his Intrathecal Baclofen Pump was implanted and our relationship with Dr. Terrance Edgar (Danny's neuro). It is a great article!! Thanks Sean I LOVE the way you handled our story! Here is the link for the Health Review magazine where the article ran in. We are on pages 11-13. ENJOY!! :)
http://newsite.stvincenthospital.org/imagesDir/pub_112140-StVincentsSp.pdf

Today Avrianna and I did alittle salon work. I cut her hair......3" off. She is so cute! She looked into the mirror runs back and says "Mom now I look like Mary Kate and Ashley, I LOVE it, thanks!" She is so excited. Oh Boy ~ Well here she is in all her glory

Today Danny was a hoot at therapy. Ms Becky noticed what he was doing (or lack of doing). He would do things that I asked him to do BUT ONLY when she would leave the room. Then when he would catch her sneaking around the door way he would STOP! So for a lil boy who is "blind" and who doesn't know what's going on....well SIKE! He saw everything today and knew exactly what we wanted him to do. He just felt the need NOT to do them, heehee. He's got attitude!! His sister has taught him well, LOL. So all in all it really was a good day. Tomorrow is OT and the teacher from the school district here at the house, so we'll see how that goes with Danny participation!