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!!!!

itch, itch, itch

not a whole lot to update on the medical front. melanie continues with chronic daily struggles of bladder pain, belly pain, irritability, fatigue, extreme itching, etc., etc. her phos was high on monday but had come down when we rechecked on wed. the itching is worse than ever; she has scrated so much that both of her arms, both ears, and a spot on her back were all bleeding this morning in addition to her scratched up legs. been in contact with dermatology. he mentioned hospitalizing her to do a body wrap. i asked if we could give it a try at home. i'll slather her in steroid cream and then wrap her up in wet gauze. we'll see how she tolerates it and if it helps. we still don't know what is going on. he said it's been going on too long for it to be a reaction to the bactrim. he is speaking with other specialists and trying to figure out what could be going on to cause such a reaction.

she got her leg braces on monday. she is really good about wearing them. she gets some red spots on her ankles from them, so we have her wear them for a while then take them off. she does not wear them to bed or when she is laying resting during the day. finding shoes to go over the braces was a challenge. she normally wears a size 9 but had to get a size 2 to go over the braces.

our house is almost finished. on sunday my dad, our friend brent, and brandon picked up a hospital bed for melanie from a most generous family. andrea used to be a nurse for our friend monet. monet's family "introduced" andrea to melanie's website. andrea and her husband have two daughters and a boy with special needs who had grown out of his hospital bed. they were so generous to give us his hospital bed to use for melanie. it will be such a blessing for melanie and our family! making medical procedures much easier on our backs when we can lift the bed up to a good height. will be able to control the angle which melanie sleeps at to help with different types of pain, etc. what a huge blessing, thank you andrea and thomas and family!!!!

our friend rachel painted melanie's room on monday. don painted the family room/entry way on monday. don worked with habitat on finishing touches on tuesday. i painted the medical room tuesday night. i painted the boys room yesterday and don painted the basement entry way. we can't thank enough all the volunteers who have worked on our house. so many habitat "regulars" have put in SO many hours building our building our home; we are so thankful for these "strangers" who have now become friends. and huge thanks to our friends who have put in so much time on our house as well--especially to the bailey family, don, and my dad who have gone above and beyond in making our dream come true! i feel i can never thank everyone enough for what a tremendous blessing this will be for us! also a huge thanks to my mom who is always so faithful in helping out watching the kids and going beyond to help with housework, etc. i hate to name names because i know i will forget someone, but also big thanks to shari and rachel who are always just a phone call away and anxious to help in any way.

friday was our 10th wedding anniversary. scott played a song for us, just like in the "old days." the kids loved it and each got their turn to play the guitar too.

well, i gotta head out to get gauze wrap for melanie, go to the post office to change address (and have them fix the lock on our current mailbox which is broken), drop some things off at the new house, and a few other stops. melanie, ethan, and i went out to the bank, post office (went to one but now need to go to a different one), and menards this morning. melanie was tired out after that, so we came home for her to rest. hopefully she will make it through a few more errands this afternoon. brandon will be gone with my parents until monday. melanie is missing him already and said she wished he was coming home tomorrow. :)better run.

update long time in coming

brandon up in the middle of the night with a migraine, fell asleep like this

brandon and ethan outside playing with our friends

melanie getting all hooked up for the gj tube replacement

melanie resting in the ER waiting for them to take us to IR for the gj tube replacement

i've gotten so far behind on updating, ugh. not really sure where to start.

melanie continued with the rash until just a couple days ago. the rash is mostly gone, but she continues to itch--arms and legs, two spots on her back, one spot on her chest, and one spot on the back of her head. saw derm yesterday. he does think it is an allergic reaction to the bactrim--her body is just taking a long time to get over it. he prescribed more potent steroid cream, doubled her zyrtec dose, and gave an ointment for her scalp. hopefully that will take care of the rest of the itch. she sees the allergy clinic later this month to determine if for sure it was a reaction to the bactrim (adding sulfa drugs to her list of allergies gives us less options for choices of antibiotics--so we want to make sure that is what she is allergic to).

we saw genetics this week. discussed quite a few things. talked about doing another muscle biopsy to further narrow down the mitochondrial disease. however, i don't want to do another muscle biopsy if the result won't change treatment. we did send out more blood testing. what we are really hoping is that we can find another (treatable) disease which is causing the mitochondrial disease. we don't know whether her mitochondrial disease is primary or secondary, but if it is secondary then we really need to find out what the primary one is so we can have some hope of treating it. the geneticist referred melanie to neurology because of the new tremors and increased neuropathic pain. we saw neurology this week. she thinks the tremors are enhanced physiologic tremors--meaning benign tremors that are enhanced either due to her medications or some other cause. at least nothing to worry about. melanie also had a hearing test which was normal (really nice to have one of those once in a while!).

melanie playing a game while having her hearing tested

melanie's pain continues to be "better-controlled" with the medication regimen we have switched to. she still has many significant times of pain, but it is better than it was. she got to play outside in the dirt one day with ethan when the weather was cool which she just LOVED! she came in feeling completely miserable though, low-grade fever, lots of tummy pain/nausea, and completely wiped out. zofran helped and she was able to go to sleep.

brandon doing a wheelie

she has continued to experience a lot of neuropathic pain--getting dressed can be a major issue as the clothes rubbing on her skin hurts.

she is on a schedule of slowly tapering down the concentration of sodium in her tpn. when they decreased it this month her body went a little crazy for a while--her urine output more than doubled and she gained about 1.5 pounds (yes, with all that urine output you would expect weight loss, but she is melanie and does things her own way). her serum sodium dropped a bit but has rebounded. we checked urine electrolytes, and again she had a high concentration of calcium in her urine. we know she has nephrocalcinosis (excess calcium in her kidneys--puts her at risk for kidney stones) and the high level of calcium in her urine is not good. her nephrologist was consulted. the problem is, at the same time her serum calcium (calcium in her blood) is low, so they are wanting to increase the concentration in her tpn. . . .but, the more we put into her blood, the more it adds to the nephrocalcinosis, and the more she spills into her urine. it's a vicious cycle. we know her kidneys are already at risk so we want to limit the calcium . . .but her bones are also at risk (already undermineralized) so we want to increase the calcium. ugh.

melanie's leg braces are finally in. she will go have them fitted on monday. hoping they will be of help as she has had more pain behind her knee lately.

melanie got to go to the house of bounce recently. she took a few rests, but she had a WONDERFUL time! she got very tired after about a half hour, so we went home. thankfully she recovered well with a good night sleep that night.

having a GREAT time at the house of bounce!

taking a rest at the house of bounce

our house is coming along very nicely. we are so excited that the big move-in day is getting so close!!!! the dedication is this saturday, we get the keys next friday (the 14th), and we are officially moving in on the 22nd. we are looking for some volunteers to come out and help with painting a base coat on the walls on saturday, august 15. if you'd like to help, please send me an email! we are so very thankful to all those who have had a part in making this dream come true!