Monday, August 9, 2010

Picture US cousin

Avrianna is very excited to have her cousin from Tomahawk here for the week. What a great week for Whitney to come. We, oddly enough, didn't have anything planned and with Danny still being out a sorts it's nice to have someone for her to play with. The nurses schedule had been "off" this week with vacations and Danny being gone for surgery so he's been stuck with just his mom more then normal. Which makes it hard to keep Avrianna occupied all the time.
Whitney going down the slideAvrianna going down
These two are two peas in a pod :) They get along very well and they like ALOT of the same things. I'm sure she's LOVING it to have someone your own age around. Both of the girls are water bugs......I finally had to drag them out of the pool at 9:30 last night and they were right back at it after lunch today. Avrianna is going to have a friend sleep over for the weekend while there parents are out. So I'm sure she is going to be worn out. I am going to surprise Avrianna and take her to the Dells next week so I hope she's not too wiped. I think we need to have some much needed one on one time just us. Once again our summer has been cut short with us hanging out together with dealing with Danny and his needs so I'd like to take her somewhere where we can have fun. She's never been to the Dell's and I haven't been there since I was a kid so we'll experience it together. I figure if it has water it should be a hit with her. I can't wait!! One of my girlfriends might be coming and bringing her kids so they can show us the ropes and that way Avrianna will have some other kids to hang with too. Dad and Danny will have some bonding time in the evenings as during the day his "girls" will be here to take care of him.
Boy is it a HOT one out there today, WOW! I'm very thankful for the pool and A/C. I don't know what we'd do without them. With the heat I'm pretty much inside with Lil Man ~ he doesn't do well in this heat, at all. Not to mention heat and MS are NOT two things that play well together. That's ok, I can update the blog and start my newest scrapbook, our Disney trips. Lil man has been a BIG help, I'm telling you he's a great supervisor :)
Danny and I were served our walking papers on Friday afternoon. I wasn't so sure we were going to bust out of there as on Thursday night he become VERY irritable and my gut just sank wondering and worrying if the hook had become unhooked again. I hate that feeling, that it will always be in the back of mind, what if. We still don't have a reason why or how in the heck it happened the first now I've become one of "those mom's" ~ UGH! So I asked if we could order a KUB to see if there was something going on with his tummy (as it was getting very distended again), knowing that I would be able to see the hooks of the VEPTR and know if 1. they were in place 2. something was us with his tummy. My hidden agenda, LOL. I saw the KUB and then took a deep breath as the hooks are still were they should be. Not so funny story here.....the xrays I posted on Monday the ones that sent him back into the OR as the hook was out of place (very obvious for even me to figure out) well the radiologist report came back with hardware in proper position. Are you kidding me?!? Just makes me trust the medical field even more, grrrrr.
Ok now back to the KUB....all I could say was WOW ~ at first I thought F.O.S (full of sh*!) as his bowels are full and black, BUT I found out it's just ALL air. Which is proof that he gut is still not awake. Danny gut is VERY SLOW moving to wake up, this time around too. So he is totally on TPN still for nutrition, but thankfully he is tolerating his meds through his g-tube. We'll just have to be patient, HA, and let Danny do things on Danny's terms or all we go is backwards.
The upper viewLower view
You can also see his new hooks in place and the right hip sublexed (one with the hardware already on it)
Boy was it nice to sleep on our own bed and eat decent meals. I came home feeling very sick to my stomach and exhausted but it was a LONG evening for us. With us getting out so late in the day I didn't have nursing waiting for us when we got home. So even though it was great being home it's always alot of work getting things in place and ready for Danny. I passed out even before my head hit the pillow that night.
The recovery road....AGAIN! This time around has been more painful for him :( BUT we are starting to need less pain meds and his wheelchair time has been getting better. The incisions, must to my surprise, still look great. The steary strips on the top reopened incision are off and it has healed over already....AGAIN! I have noticed a large "Dimple" or divit if you will, right above an incision on one side, that wasn't there before. I am going to have to inquire about it at the post op appt next week. He is healing very well and with my measurements he's grown about another inch with the revised VEPTR surgery, that would make him 48"...... Seriously Danny?!? BOTH my kids have this mentality that this is THEIR world we are just living in it, LOL.
Here's what Dan has been up too....his new hobby. Picnic Tables ~ I LOVE it, so now he has to build one for us as this one is going up north to the Shack. Handmade all for the wood cut from The Newwoods.
I don't know if you remember from the Fourth of July when we were up North for the Fourth we had Dan's cousin from Vegas take some pictures of us..... We'll here are some of my fav's. Thanks Lori!

When it gets quiet and there is a 7yr old around..........

Now I have to get all the pics together and figure out which one we will blow up for our family portrait. I hope to get the rest very soon.
Thanks for checking in on us!

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