the weather sure is interesting considering it is the middle of july! no complaints here though, we have actually been able to have our air off and melanie has been able to go outside!!!
strange look for july--melanie bundled up blowing bubbles and watching the kids ride bikes. our friends were over; baby asa is in his car seat next to melanie.
melanie didn't want anymore pictures taken. :)
grandpa, brandon, melanie, and our friend mckenna checking out some rocks.
ethan and our friend samiah swinging.
ethan riding our gokart.
we found out melanie does have another urinary tract infection. it's not her usual enterococcus this time. the culture isn't finalized yet, so they are sure exactly what bacteria it is, but it appeared to be two different bacteria--one of which looked unusual. infectious disease doctor said it could be a typical bacteria whose appearance is altered because of all the antibiotics melanie has been on. the final results and susceptabilities won't be done until sunday. not sure if we will get the results sunday or monday. she went ahead and started melanie on an antibiotic that she thought might cover at least one of the bugs. this antibiotic increases her ostomy output, so we are dealing with that. hopefully she will soon feel better. she has been frequently asking for a diaper and then standing for hours trying to pass urine. the past few nights have had her awake much later than usual standing trying to void. it's the urgency/frequency associated with a UTI; add to that she has dysfunctional voiding (cannot empty her bladder completely--and most of the time can't empty it at all). during these times she doesn't want a cath (and it isn't at a time where she should need one, so i'm sure there is not much urine in her bladder). she was still having these symptoms today and tonight, so hopefully the antibiotics work soon.
she continues to have a hoarse voice and yucky cough with the cold she has. first thing in the morning is difficult for her. she has a hard time coughing the "junkies" out of her lungs so makes her uncomfortable. usually taking her inhaler helps somewhat.
melanie had a major . . .i don't know what to call it--flip out--this morning. i am not sure what the problem was exactly. i know she was having a bad episode of neuropathy and even the diaper she was wearing was causing pain; but she became wildly uncontrollable--thrashing, kicking, flailing, and "trying" to yell (her voice is so hoarse from the cold). thankfully it didn't last more than probably ten minutes, but it was very disturbing. afterwards she was perfectly fine, super sweet, and ready to play.
this morning she had what almost looked like tremors in her left hand/arm. she was laying on my bed and her left hand was quivering. it is the second time i've noticed something like this. just the day before she had come to me and told me that her arm was shaking but she wasn't doing it. it was her right arm that time that was quivering. i am no sure what to make of it--if it is just muscle fatigue or something more.
today was such a nice, cool day we decided to go to a local county fair. the weather was perfect for melanie. cloudy so not much sun, cool but not cold, not too humid, not too windy. the kids had an awesome time. it is so rewarding to see/hear melanie enjoy herself SO much when she gets to go to things like this. she has no fear and would go on every ride if we let her. they each went on the slide, the motorcycles, the ferris wheel, and then on the swings twice. then brandon got a sno cone, ethan got cotton candy, and melanie got sno cone ice with no flavor. those are big once-a-year treats! it was REALLY nice to get to do something together as a family, especially something outside that the kids enjoyed so much!!!
i'm guessing melanie is having a slight autonomic response to being outside and the busy day. her skin was very mottled, face flushed, and eyes very dilated when we left the fair. her heart rate was also very elevated and remained that way for quite some time. now since she has been asleep her heart rate is all over the place dropping to the 70s then jumping to the 120s and everywhere in between.
i was exhausted and fell asleep early. i was awoken by one of brandon's nighttime "episodes" and have had trouble falling back to sleep which is why i am updating now, at 1 a.m.
i took brandon to the doctor to discuss his night time episodes. they are happening a couple times a week. starts off i assume he is sleeping walking. he is very disoriented and almost in an anxiety attack, pacing back and forth saying, "mom! mom!" but won't follow instructions or answer questions. his eyes are not focused and he doesn't understand what we ask him to do. many times he is holding his stomach and appearing nauseated. this "out of it" state can last from about 5 to 15 minutes during which time sometimes he is pacing and anxious the entire time, other times he wonders from the living room to the bathroom to his bedroom appearing to have no idea where he is going, etc. typically he eventually becomes coherent and many times is sick to his stomach, thinks he is going to throw up, and tosses and turns on the couch nauseated for a while before falling asleep. during this time he almost always comments that things are "too small" or "too far away" and is obviously disturbed by this disrupted perception. anyway, i took him in. he has had a longstanding problem with constipation which we know and have been treating with numerous medications, but he is still not regular. the doctor could tell by abdominal exam that his intestines are full. we are increasing his meds more but haven't noticed any improvement yet. she also put him on pepcid since he describes some of his night-time stomachaches as going up into his chest (and with the strong family history of reflux). regarding the altered visual perception, she said there is something called "alice in wonderland syndrome" which sounds exactly like what brandon is describing. it typically happens with mono, an aura associated with a migraine, and can happen with frontal lobe seizures. he doesn't have mono, doesn't appear to be having a migraine during these night time episodes, and because of his altered mental state at the time of these episodes, she is consulting neurology to see if he needs to be evaluated. it seems very unlikely that he would be experiencing seizures, but it is something to check into. we are praying we can find an easy solution to these episodes as they are very disruptive and disconcerting for everyone.
for some good news, our house dedication is officially set for august 8 at 3 p.m. we do not get the keys that day. the closing is scheduled for august 17. that is when we will get the keys. we are so thankful to our wonderful friends, the baileys. their whole family was out working on our house today. they have really taken on an active role in helping with every aspect of this exciting move for us. robin is putting together a scrapbook of pictures of the building of the house. she and her coworkers are planning on coming in and moving us--boxing everything up, moving it, and setting it up for us. sheldon has been out working on the house countless times. today their whole family was out there as well as one of their friends. i can't thank you guys enough; you have done so much for our family and we appreciate you so much!!
shelby standing in front of the newly cleaned-out garage. you should have seen it before; they did a LOT of work today! and shelby swept it out for us!
go the cupboards and appliances in the kitchen. looking more like a house!
brandon and ethan both enjoyed holding and playing with our friend asa today. asa started fussing a little, so ethan thought he should hold him on his lap and watch veggie tales--asa thought it was a good idea too. :)
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melanie and ethan outside the library with mother goose
melanie picking out books at the library
ethan picking out videos at the library
