melanie had a bit rougher day yesterday. just generally not feeling the best off and on. stomach pain, generalized neuropathic pain, and her right knee was hurting her in the evening.

ethan and i got our hair cut yesterday. we are both cooler for the summer. :) thank you so much christy!

they put sod down at our house yesterday. looks really good; looking more like a yard and less like a construction site. :) we have a pretty sure buyer for our house; spoke with them yesterday, and they would like to move in the beginning of august. trying to get our house done by july 31 may be pushing it. if there are any guys experienced in laying laminent and putting up doors/trim that would be available to volunteer on tuesdays/thursdays please let me know. hoping getting a few more experienced people in there during the week will help speed things up a bit. :)

melanie still wasn't feeling the best after scott got home from work, but there are discounted gocart rides at a place in rochester on tuesdays, so we decided to give it a try. everyone had a great time! enjoy the pictures. you can click on the link below to view video of the kids on the gocarts. brandon had fun driving his own gocart for the first time.
http://www.onetruemedia.com/otm_site/view_shared?p=908a44ea18a68cfd5aedfc&skin_id=601&utm_source=otm&utm_medium=email

lots of fun this week

sorry for the lack of updates. no news is good news in this case. melanie had princess camp at church this week which she LOVED! she had so much fun; and it was such a great experience for her. she loved the crafts, making the snacks, playing dress-up, painting her nails, all of it. it was right up her alley and such a neat thing for her to be involved in with all the other little girls. they made a really neat scrapbook which is such a great keepsake. they even had a coronation ceremony the last day. all the girls walked across the stage and got a crown, a necklace, a boa, and a ring. so special!

on monday brandon got his cast off. they were impressed by how well the bones were healing, so he can go without a cast. she said to be careful for at least another three weeks and not do anything that would have the potential for falling on that arm. he is wearing a brace for some things (playing catch, etc.).

on wednesday we had the privilege of seeing mark and june again! mark flew us to denver three years ago when we went to see a pulmonary specialist there. he volunteers his time and his plane to fly those in need of medical treatment to hospitals (through angel flight). mark and june are just such wonderful people and mean so much to us. the kids were so excited to have them come. they came to visit at our house, took the boys to see the movie "up," then we went and had breakfast with them at their hotel on thursday morning. what a great time it was to see them again! they, of course, spoiled the kids with gifts. the kids were very sad when they had to leave, but we hope to see them again soon.

on thursday scott's aunt and grandma came to visit from michigan. the kids have been having a great time "showing off" and having a fun time. we are enjoying aunt nancy's pampering as she makes us delicious meals!today we went swimming at the y. the kids had a great time of course!

melanie has had such a great last half of the week. she has had intermittent pain, but not near as often and not near as severe. she has had more energy and just looks like she is feeling great! it is so wonderful to see! i keep expected a crash, especially after the busy week with princess camp, company, swimming at the y; but she has amazed me. her heart rate has been a bit erratic at night, and it seems like she is having darker, more yucky-looking drainage from her g-tube; but otherwise she is doing great. still has a wet, junky cough from the cold. tonight she was very exhausted and didn't want anyone around her but fell asleep quickly. her SATS are lower than usual tonight and she is needing oxygen. her heart rate has been a bit funky. at one point it was reading as 14. the probe appeared to be reading fine. i jumped up and ran into her room. she appeared fine except her arm looked almost dislocated in the position she had it hanging backwards over the edge of the bed. i moved her and her heart rate normalized. i didn't think to grab a stethoscope to confirm her heart rate being that low, but it seemed to be reading. SATS were reading in the 90s. anyway, keeping an eye on her and hopefully she recovers tonight and is still feeling as great tomorrow as she has the past few days.

oh, we saw her pediatrician this week. checking a bone age (through an x-ray of her wrist which she had done on friday). will be further discussing the colitis issue with the surgeon in a few weeks, but her pediatrician is hoping to find a way to treat it without removing the colon (i'd like to find a good treatment option other than surgery too!). he gave a prescription for some steroid cream for her arms. she has contact dermatitis on both of her arms from where the clonidine patch goes. continuing to keep an eye on her lungs as she continues to have the cough and intermittent coarse breath sounds. will be discussing pain management further with the pain clinic as well as seeing a pain psychologist to get some ideas for how to help her handle the pain better. we also may be pursuing a referral to a mito specialist to see if we can get some questions answered. he also ordered an appointment back with genetics since it's been six months since we've seen them -- see if there are any new developments that might be pertinent to melanie. i think that is about all we covered.melanie will be seeing cardiology on monday. see if we can get an answer on this "t-wave" issue once and for all!

the boys went to the nature center while melanie and i were at her doctor appointment.

pain, pain go away

melanie had a really rough morning. very, very out of sorts, not wanting anyone around, anyone to talk, anyone to touch her; obviously dealing with more than usual pain. it was miserable for everyone. finally, around 11, it seemed that her pain meds kicked in (she had gotten them a little later than usual because she was in the shower--it was port reaccess and ostomy change day). the difference is night and day. when she is "just" dealing with her baseline pain she is interactive and sweet. when the pain is more than she can handle her demeanor and personality are completely different, and she will not accept any kind of comfort in the form of rubbing her back or a hug or a kiss on the head. tonight she had a piece of gum that she said was hurting her tummy. it was at a level of pain that she was able to come to me, tell me her tummy hurt, and accept a hug from me (when her pain is out of control she will NOT tell us where it hurts). we have a pain scale with faces on it; and that level of pain she pointed to as a level 6. this afternoon she was able to tell me that in the morning her tummy was hurting and it was a level 10. sure wish she didn't have to know level 10 pain! urine culture came back negative today which is good but also means that is not something contributing to her pain--so nothing we can treat to make her pain any better.

her nose was running most of the day, and she's coughing more now that it's night; but she's doing well with the cold so far. i do have her on blow-by oxygen tonight just so her body doesn't have to work as hard. her heart rate is higher than usual; so i know it's working harder to keep her SATS up.

brandon comes home tomorrow! i am so ready to give him a great big hug and hear all about his week (though he does not share much of what he does at school, and i'm wondering if he will tell us much about camp). today melanie mentioned that she was so excited that brandon comes home tomorrow!

pictures of melanie in grandpa's air conditioned truck at the parade:

melanie getting an ECG:

brandon ready to go to kids camp:

melanie playing the princess game she got for her birthday:

melanie likes to walk chocolate in the house:

melanie loves chocolate so much:

a girl and her dog:

cheese fest fun!

wow, what a day! it's the cheese fest weekend which we have loved since we were kids. now our kids are loving it. rides aren't really brandon's thing. he went through the maze twice and the merry-go-round once, but wasn't interested in any other rides so gave the rest of his tickets to his cousin. ethan really enjoyed the rides this year. he wanted to go on the alligator roller coaster but ended up not getting a chance. he enjoyed all the other rides and went on the ferris wheel with grandpa too.

melanie is having major problems with pain with administration of medications through her j-tube, so those have had to be given extremely slowly. she wasn't even done with her morning meds when it was time to start her afternoon meds. same with this evening, she wasn't done with her afternoon meds when it was time to start evening meds. we will get them in eventually, but it sure is an all-day process. spreading them out so far does seem to help her pain. slowing down the rate of her vancomycin has also seemed to help her feel better. she was still on-edge today and dealing with pain, but had a much better day than recent days. her ostomy output has decreased since surgery for whatever reason.

melanie had a really fun day. i took her up to the cheese fest this morning before it got hot. everything was closed, but she got to look at the rides and the games and food stands.

then i took her to the park where she loved swing in the supported swing.

later we went to the kiddie parade where she got to see and hug the "famous" cheeselies -- the mascots for the cheese fest.

she played with grandma at their house during the hot part of the day. i took the boys to the cheese fest where they had fun on the rides with their cousins (brandon would prefer playing the games though).

in the later afternoon melanie got to play out on grandma and grandpa's deck in the shade with the boys. more fun she rarely gets! so glad it was such a nice day!

then grandpa drove melanie (and ethan and i) up to the cheese fest one more time. parked right near the merry-go-round, and carried melanie to the line. she got to ride the merry-go-round for the first time in many years--usually the weather is much hotter during the cheese fest. she was thrilled!! she is pretty fearless, so i'm sure she would have loved to ride many more, but that was plenty for her and she was pretty wiped out and warm. her heart rate is a bit elevated tonight and SATS down a bit.

it was a fun day for everyone. so glad melanie was able to feel relatively well and enjoy a fun-filled day.

here are some videos from the day!