Ready to Go

Sorry the late post. Boy does time get away from me! Well I tore the house apart and put it back together. It is ALL clean! The kids are all packed and ready to be in the sunny state once again. It was SNOWING outside today, yeap you heard me snowing! YUCK, we are leaving just in time. I don't like snow and cold, at all! Today I busted my butt and got pretty much everything done. I just have a few odds and ends to get together tomorrow. Danny slept today till 3 in the afternoon and went to bed with no problems at about 10:45, I am keeping my fingers crossed that he isn't brewing anything and that is was just a growth spurt (like he needs any more of those, LOL). In the morning Danny and I are heading up to Green Bay to get his pump filled with new meds and then back home to pack up in the RV then we're off. I will post once we get there and get settled in. We are planning on taking the kids trick r treating so we need to be there by Friday. Plus all of Danny's supplies, food, ect. are being shipped from WI on Wednesday so I need to beat them there as I don't want the stuff sitting outside. I hope to meet one of the Caring Bridge mom's along the way down this time in Kentucky I am excited to meet her as I know she has had a rough go of things as she lost her son this summer. I can't wait to meet her in person and let her know how much she and her son's story had inspired me and touched my heart.

Here my lil man in his new wheels. This is a Solara by Invacare. He loves blue so we had it blue this time. The additional head piece you see that wraps around the base of his head over his shoulders is called the "Hawk" head rest. I am only going to be using this one primarly when he is in therapy and they are trying to get him to use better head control. For the most part his LOVES it and so do I. Dan had to make some adjustments so that we could transport him in the van with the EZ lock system and now all is well. Avrianna keeps saying he is "handsome in his new chair". What an awesome big sister she is!!





Here's my lil birthday girl at her party. I decorated the cake for her...she loved it! The party was a fun time there ended up being 12 kids over for the "kids" party and I had them make spider bracelets out of pipe cleaners and then we had them put there hands in bags and they had to figure out what was in there ie: peeled grapes were eye balls, wet cold carrots were fingers, cooked spaghetti noodles in oil were guts, and mushed up finger jello was brains. After the games she opened her presents they all had cake and ice cream and then went downstairs to burn off some energy. It was a great time. After the kiddos left we had a second swing of party goers....a family party which we ended up having about 25 people, WOW! Dan and I made smoked turkey and roasted a ham with ALL the fixings. Just like a Thanksgiving dinner! (I said because I will be gone for turkey day that it was my thanksgiving then, LOL.)It was alot of work but it turned out to be wonderful. She's getting so big so fast, sigh!

Isn't she the best witch....we'll I'm pretty partial though.

Glue and more Glue

Well we made it to Milwaukee for Danny's sleep study on time......but then sat and waited for an hour before someone came into the room to start hooking Danny up. We actually hit no traffic on the way there, now that is something to write about, Yay! Danny and I sat and cuddled in the bed watching Aladdin while we waited. I was starting to put my guard on when there as they didn't seem to have their stuff together ie: running around, no one came into the room for over an hour to even acknowledge, then the orders were wrong in their system for his settings, and the glue squirted all over the pillow right next to his face (this is like super glue). But they redeemed their selves by not putting on alot of tape on him as the last time not only did he get 2 Huge pressure soars on his face from the mask but he had an allergic reaction to all the tape they have to put on his face, ugh. But not this time, Yay! Well after he was all set up he actually fell asleep sooner then normal so the testing could begin. I sat in the dark, with the hall light illuminating just enough light for me to address the Christmas card envelopes (yeap there is that OCD kicking in, heehee)so there's another project off my to due list. Yeah!! I slept like crap on those chairs, but didn't go in thinking I was going to get a good nights sleep, but at least lil man did. There were two other children that were being tested last night too, but they were not as cooperative as my angel. They were up Very Very Very early (like 1 am and didn't fall back asleep, so they left around 2-3 as they were making alot of noise.) But lil man didn't hear it so he slept through it all, Yay! They woke us up at 5:30 and by 6 we were on the road. Boy I can't believe the traffic at that hour of the morning in Milwaukee, good thing we don't drive that every day, YUCK! I should get the results in about a week. He seemed to do ok, but I don't see or hear any of the monitors so really won't know till I talk with the doctor. The tech did mention he "paused" just a few times, but recovered quickly so maybe he is starting to have central apnea, we'll see what the doc has to say. We got home and I had to wash his hair three times and there is STILL glue in there, ugh. It should be all out by tomorrow. No red marks or pressure soars either so I'm one happy momma!
Physical therapy was already at the house at 10 this morning and we are waiting for OT around 2. So in the mean time I am making all the dips and some of the meals ahead of time for our trip up North. I'm hoping the weather corporates with us.
Oh yeah the wheelchair. ...... it's here but not all the right pieces came in so Danny still can't use it yet. I had this misconception that a wheelchair is a wheelchair, until the new one came in my door. It was like seeing his first one all over again and all those emotions. This one is so much bigger and we needed to get alot of special pieces for Danny as he is becoming more complicated, sigh! So it's been another adjustment on my part, but I'll get over it as long as he is comfortable and I can get him around comfortably. I will post pictures when it is all set up and right for him.
Please take a few and stop by Angel Lilie's site.....today would have been her 2nd birthday! What an awesome family! Happy Birthday Lilie!!!!

Amazing

What an AWESOME company! They really truely care about the well being of our kiddos.
Just wanted to share...please click on My New Normal to the left on the sites I follow. What a wonderful story to share!!! Lil Makily is getting her safe bed, finally. People just are not that nice these days especially when dealing with $'s and handicap equipment, so wanted to share! Please read it. I am so happy for them, her mom has fought so hard for this bed and has been denied many many times.
Not too much to report here. But just wanted to share a good act of kindness for once.
Ohhhhhhhhhhhhh yeah - Danny gets his new wheels today! I will post pictures after they bring it over.
Take care! Don't count the days......Make the days COUNT!

Adoption

Me AGAIN! Wow three posts in one day, wooooh. We met with the adoption social worker and she was very nice. I think it's going to be a great match! She is very accommodating with our families life style and she's very easy to talk to. I hope and pray this process goes alot smoother then the last attempt. She seems VERY sincere in helping us match up with a child for our family. I'm SOOOOOOOOOOOO excited to be on this journey again. Avrianna was so happy to see her too as Avrianna knows that this lady is going to help her get a (sister she hopes) sibling. Thanks for all of your support with making our dream of a bigger family come true. Well off to make dinner just wanted to fill you in. It's a GREAT day!

Unfortunatly Danny was sick last Monday and Mr. Dan (PT) was sick today so yet another Monday Danny didn't make it to water therapy. Cross you fingers it works for next Monday! Danny's new wheelchair and floor sitter are going to be delivered here at the house on Friday, during PT so Mr Dan can see his new wheels and talk with Becky about it.
Take care!