NEW HOME!!!!!!

(this was typed on sunday, so "today's" are referencing sunday. :)

we got home from the hospital on thurs. within about an hour of being home brandon had another migraine. gave him motrin and he took a three-hour nap. thankfully, he woke up feeling much better. he had an appt with his pediatrician on friday. started him on a daily prophlyactic to help prevent the migraines and got a rescue med for when he develops a migraine. supposed to treat any "regular" headache immediately with motrin and any headache he can tell is more than a "regular" headache immediately with imitrex. hoping he never has to get one that gets so out of control again. he woke up with a headache friday night but took motrin, went back to bed, and was ok in the morning.

melanie's neuropathy has been WAY out of control, and she was miserable friday and saturday. no clothes were tolerated, and she pretty much just didn't want anyone around her. this morning when i was giving neurontin the other port of her j-tube popped open, and she lost a lot of the neurontin onto the floor. i definitely didn't want to under-dose her, and i know she can have at least 8 cc at a time (she used to get 8 cc three times a day, now she gets 6 cc four times a day) so i redosed her with how much i thought she lost plus maybe a little extra to be sure. apparently she got a little extra--she only went through two shirts and two shorts before she found ones that didn't hurt!!! that is a record! she was also a much happier girl. we know we need to get her neuropathic pain under better control, and i'm hoping for a call to get a plan worked out this week. dermatology wants neurology to get better control of the neuropathy because that may be what is causing all her itching and poor torn-up skin.

some of the scabs on melanie's arm

regarding the house!!!!!! . . . .saturday morning a wonderful group of people donated their time to come pack everything up, load it, haul it to the new house, and bring it all in. they were amazing!!! they got all that done in about 4.5 hours!!! we are more than grateful to all the wonderful people who made such a difference in getting us moved in! i can't imagine how long that would have taken had it just been us!!!! the next part is going to take weeks. we have SO MUCH stuff we need to go through and get rid of. it really is overwhelming. it's the first time we've moved since we've had kids, and the amount of STUFF that has accumulated is astounding. we are going to have a huge garage sale this coming weekend, so this week will be VERY busy with sorting through things (of which we have already done SO much sorting!).

melanie and shelby hanging out during the week while we were sorting/moving beds in, etc.

melanie watching a movie at the new house during the week while we cleaned/sorted

a week ago sunday a bunch of guys from the church came to help bring in melanie's new hospital bed. that thing is heavy!!!

thanks to loraine for the fun projects she sent for the kids; they kept happy and entertained while we worked!

the kids' rooms are amazing!!!!!! the boys' theme is lego island, and the mural is awesome!

melanie is going to have cinderella, the fairy godmother, the birds, and the mouse friends on one wall; a castle and princess melanie on another wall; the mouse friends sitting up on top of her closet; and possibly more. the first night we slept here melanie said, "i'm going to have cinderella dreams because i can see cinderella on my wall when i go to sleep." (bad dreams are a pretty big issue for her, so her thinking she can have good cinderella dreams gives her reassurance). then one night she was laying in bed with her head turned backward just looking at her castle and princess melanie. she is really enjoying her pretty princess room!

our good friend, rachel--one of our artists--working on melanie's castle




melanie sleeping in her new hospital bed, in her new room, with her newly painted mural. :)


the work in progress of cinderella and the fairy godmother


the medical room is going to be so nice for storing all her medical stuff!

getting the family room, toy room, the garage, and our bedroom organized are the major "issues" right now. we will get there, it just takes time. i REALLY want to be clutter-free in this house; so we are working very hard to get it that way.

it is still sureal to think this is actually our home. seems like we are just "visiting" and will have to go back to our trailer in a few days. it truly is a dream come true. there are SO many "little" things i fully enjoy on a daily basis--they seem "little" since they are so normal for so many people, but for us it is a dream come true!!! we are so blessed!!!!

after supper was again like a dream come true. it was cool enough so melanie could go outside. so we all went outside (chocolate too). we played in the backyard then watched the kids ride their bikes up and down the sidewalk. such an amazing blessing. melanie was in her glory. she was exploring in the backyard; she was off her tpn, so she just walked off on her own across the yard looking for bugs or whatever she could find. i heard melanie say, more than once, "this is so FUN!" so many things we enjoyed today--the kids playing in the garage, drawing with chalk on the driveway, playing with cars, bat and ball, etc., while we worked in the garage, etc. i know most of this seems "small" but to us it is HUGE and i keep wondering if this is all REAL.

melanie hanging out in the garage while i sorted through things


picnic in the garage

the boys hanging out in their room playing legos and listening to some tunes. they spent a long time in there playing together

more "tunes" and legos!

melanie outside with chocolate

brandon giving melanie and ethan a ride

it was one of the best days melanie has ever had. her body is paying for it however. when we came in her SATS were low 90s, heart rate over 160. her heart rate is still very elevated hours later. i'm sure her body is not used to that kind of excitement and activity. her tpn/iv hydration is also not set up to nourish/hydrate her when she is that active. by bedtime she was requesting lots of drinks (which just drain out her g-tube so provide no hydration) and gerber baby snacks (again drain out her g-tube and provide no nutrition). i'll need to give her a bit more hydration. if her activity level continues to be so much more, we may have to look into increasing her tpn too. who knows how things will go though.

oh! and melanie lost one of her top teeth this morning! that is the third tooth she has lost. she amazes me. i wiggled it a little then she wanted to try. she is so tough, has no regard for or fear of pain--she got a hold of that tooth, wrenched it sideways (i heard crack, crack, crack as the roots broke free) then said, "now feel mom." it was hanging by a thread and came out in my hand. she is quite the tooth-puller-outer. :)

i hope this makes sense. my mind is so fried and tired from looking and sorting and organizing and arranging. make sure you click on the link above to see LOTS of pictures!!!!