deck, salamander, and more

picture of the progress of our deck, it's coming along!

dad found a salamander in the holes they dug for the deck; the kids thought it was great and played with him all day and then let it go in the evening

melanie continues to have difficulty sleeping. not sure why, but it is a problem we need to fix.

around her gj tube is leaking like crazy. not sure if she's got a lot of extra pressure in her gut or what, but stomach contents keep pouring out from around the tube. she is changing a gauze sometimes more often than every five minutes as it is completely soaked. all that moisture is not good for the yeast infection of course. we are trying to stay ahead of it.

she is having a lot of urine output, i'm sure aided by the diuril. trying to keep up with her hydration. she has gained 2 pounds since starting the diuril--sounds backwards, but her body seems to third space fluid when it feels "threatened." wondering if having the diuril pull some fluid off her is causing her body to third space. not sure, just trying to make adjustments to compensate.

she continues to show signs of a uti. urgency, frequency, and one of her most common signs--trying to void on her own.the new gel we are trying to help with the bladder spasms is not being tolerated. putting the gel on her skin "hurts" her. it's just a gel we rub in, but i'm guessing it has to do with the extreme sensitivity of her skin and she ends up close to or in tears when we put it on. so we went back to the oxytrol patch today instead.

yes, for those of you scrolling through this message to find mention of the picture on the welcome page . . .that is an ultrasound picture. and yes, it is MY ultrasound picture! and yes, we are having another baby!! i am around 11-12 weeks (ultrasound today said 11 weeks 6 days). due date is somewhere around april 18, 2010. if that date looks familiar it is because that is melanie's birthday! :) we had a couple scares in the beginning of the pregnancy, but everything looks great now and baby looked healthy and active on today's ultrasound. i have been pretty sick with this one, but B6 and unisom help. the kids have known for many weeks now (we had to tell them back when melanie had her gj tube replaced because i was not able to go back in the room with her due to the radiation), and we have been very impressed with how well they have kept the secret! now that i'm almost in the 2nd trimester we will let them start telling people. we are all very excited!

11-12 week ultrasound of newest memeber of our family

yes, Baby is doing a headstand in this picture! he/she was very active

didn't remember until i picked up the diuril that you are supposed to avoid exposure to the sun while on it--i remembered as soon as i saw the bottle from when melanie was on it before. i called the light therapy office to see what we do about it. they said, "she HAS to have the light therapy as nothing else is working and her skin is in such bad shape." so they called the nephrologist to see if there was anything else he could put her on. he said she REALLY needs the diuril and it is the best choice of medicine for her. so, being she really needs both the medication and the therapy, but they contraindicate each other--we are going to do both and be very careful. we had to turn down the level of melanie's light exposure (and duration of time) in the uv light box. diuril makes the skin more sensitive to light and will burn more easily, so we are just watching her close. she had her first dose of diuril on thursday then lower-dosed light therapy on friday. she didn't burn, so that's good. we are going every monday, wednesday, and friday; unfortunately, we are seeing no results. the condition of her skin is not improving and, if anything, it is getting worse. she frequently has spots that are open and bleeding. she has an area on her face and one on her belly now. she has also developed a yeast infection around her gj tube. hoping that does not spread to infect all the open sores on her skin.

one affected spot on melanie's face

open, bleeding spots on melanie's arm (there is cream on it)

melanie in the light therapy box with her "fishy" goggles

melanie in front of the light therapy booth with 'pinky' the puppy

waiting for light therapy watching video on demand

working on a puzzle while waiting for light therapy

here are some pictures from kids day america from last saturday:

couple pictures from thursday when i set up the sprinkler for ethan:

my dad and scott dug the holes for our deck today. the first three gave them quite a hard time with rock and clay. a lot of back-breaking work. the last two were nice black dirt, and they zipped through them. some pictures of the work:

melanie watching them work.

not much else to update. hoping to get some answers and help from melanie's neurology appt on monday. also anxious to see how her liver functions are doing after the jump last week. during some tummy pain today her face became flushed and her temp rose to around 100. she used her TENS until which she has tried in many, many months. she kept it on for quite a while and eventually she said she felt better. her face was no longer flushed, and the low-grade fever was gone. hoping she will start using (and getting some benefit) out of the TENS unit again--gives us one more tool to help her when she is in pain.

brandon had a headache everyday this week except friday. he was getting motrin too often, worried about rebound headache; so we switched to using tylenol for the "low pain scale" headache days. tylenol had not been effective previously, but we had been waiting until it was worse then. now we are trying to treat it right away. he had a headache again tonight. i talked to his pediatrician this week. she had given a few options but i was hoping it was just a bad week and would get better. we'll have to decide if we go to neurology, start a different prophylactic medication, do head imaging, etc. i'll have to talk with her on monday because the school is wanting a more specific protocol as to when to give tylenol versus motrin versus imitrex and at what point is it too many days of motrin. we have a "rough" protocol (tylenol for headaches 1-4, motrin for headaches 5-8, imitrex for headaches 8-10). however, if he has a number 5 headache three or four days in a row--that is too many days to have motrin (causes rebound headaches). so we will have to get that figured out.

our big porch swing thing fell over and landed on ethan's head last night. of course head wounds bleed like crazy, so he had lots of bloody, matted curls. the actual cut looked a couple inches long at first, but when i finally got the bleeding stopped and some of the blood cleaned up, it's only about 1/4 inch. the edges aren't totally closed, so it bleeds a little off and on; but he seems to be fine. brandon sure felt bad for him and was in tears after seeing all the blood.

it's been a busy week. trying to get moved in and get ready for a garage sale. we had the garage sale on friday and saturday. saturday was kinda chilly but i'll take that over too hot. our prayers were answered for no rain as we had SO many tables and many of them were out in the driveway. the boys had fun with it, helping to set up and brandon taking the money. i'm glad it's over. :)

the house is *getting* there. still a lot of things to find a place for, but progress is being made. still doesn't seem real that this is our home. i still wake up to the thought of needing to "work" on the house--unloading boxes, putting things away, etc. it's starting to seem a little more real, and we are thoroughly enjoying and LOVING our new home! the weather has just been phenomenal. melanie has been able to be outside everyday which is like heaven for her; she loves it SO much! we have been able to have the windows open more days in a row than i remember ever being able to have, especially in august. not ideal weather for going to the beach or swimming, but it is working perfect for our family right now.

loving being outside!!

i've taken chocolate for a walk around the neighborhood a couple evenings. i feel so blessed to be part of this new neighborhood. life is so different here than in the trailer court. we have been blessed with wonderful neighbors. we've met many of them already, quite a few during the garage sale. everyone is very friendly and welcoming. such an answer to prayer to have such great neighbors! the house, the yard, the neighborhood--it all really is a dream come true!

melanie continues to struggle with intense neuropathy, itching, and gut pain. she has had nights where she cries out in her sleep, others where she moans miserable, and often has a frown or look of pain on her face even during sleep.

looking miserable even in her sleep

she has been snacking on gerber baby finger food for a couple weeks. she loves to do it, but the pain it causes is quite intense. her demeanor, attitude, everything have been very "off." friday was a terrible day. she could not stand anyone around, she was miserable, very upset with everyone, and just plain not pleasant to be around. she had also had blood draining from her g-tube (bleeding in her stomach). finally i decided enough was enough--obviously the finger foods were causing irritation in her stomach with the bleeding--and her attitude and behavior was so poor, we suspected it was due to pain. she finished the box of finger foods, and i explained we could not get anymore as they were causing her belly to bleed. she was a little upset but accepted it nicely. saturday was a wonderful day; she played happily, her attitude and behavior and demeanor were drastically different---much more like our sweet melanie. i commented to her that i was so glad she was feeling better. she said, "how do you know i wasn't feeling good before?" i said, "oh, i can just tell." she said, "yah, when i was mad you asked me if my tummy hurt. i said, 'no! my tummy doesn't hurt!' . . .but i was tricking you, my tummy really did hurt." she never likes to admit when she is in pain and will adamently deny it or sometimes will say, "i don't care if i hurt." it was interesting to see her "admit" to the pain that had happened previously. the neuropathy, however, continues to be a major problem. it takes many tries and sometimes many hours before she can find clothes that don't hurt. this morning was awful--she went through so many clothes and many, many tears trying to find something to wear. finally she just broke down and asked to sit on a chux with no clothes. i sat a chux out for her on the chair, but even that hurt her. i got a cloth chux and tried that--no go, that hurt. so i spread out her soft pink blanky for her to sit on--even that hurt, but i finally got it situated well enough where she could tolerate sitting on it. finally, about 45 minutes later, she could tolerate being covered up by a blanket. when her tpn ended this afternoon she was SO excited to get off the pump and go outside! but of course she still was not dressed. we went through the whole process again, trying on clothes, warming them in the dryer, stretching them out, lots of tears, trying desperately to get something on so she could go outside. this went on for 90 minutes. finally, she so much wanted to go outside she held the clothes she was trying on out away from her body and just cried. she was able to let me give her a hug, and she went that way--holding her clothes away from her body--to get her shoes on. finally she was able to tolerate them and got outside.

sunday late morning, finally able to relax and tolerate blankets touching her skin

we had our first family walk at our new house today. we walked to the park. the boys rode their bikes, and melanie rode in her kidkart. it was great. melanie LOVED the park of course, it is such a rare treat. we only stayed about 15 minutes; i could tell it was too much for melanie. she was very grumpy on the way home and went to bed shortly after we got home.

home sweet home

we see a new neurologist tomorrow, and i sure hope she has some recommendations on how we can treat this neuropathy. it is consuming her whole day, and we all dread getting her dressed.she is still itching and still waking up with bloody arms and/or legs in the morning. her skin is so torn up, and i'm afraid it is going to scar. we continue all the anti-itch medications and remedies (atarax, zyrtec, zinc oxide, robathol, have tried hydrocortisone and triamcinolone). i don't know that we are getting any results though. the scabs seem to dry up and look a bit better then they itch her terribly, break open, and bleed again.

ethan ended up with a cold. the runny/stuffy nose part seems to be better now; just the left-over asthma cough, mostly at night. i've got it now and am very congested. scott seems to possibly have it--not sure if it's a cold or allergies. hoping melanie doesn't get it on top of everything else. brandon said his throat was hurting tonight and didn't eat much supper, so i suppose he's coming down with it too. sure not ready for all the winter colds to start.

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!!!!