Another week has come and gone. Someone please tell me where the times goes, and better yet, tell me how to slooooow time down. I was looking at Colby the other day and thought, OMG, he's 12 years old! How and when did this happen? He's getting a moustache for crap's sake!!
So this is hopefully the last or next to the last time I blog on this teeny tiny iPad keyboard. I bought a laptop today! Well, I ordered it off the internet anyways. Should be here in 4-7 business days. Super big shout out and a big fat thank you to my friend Jimmy for helping me navigate through all this. Actually he did all the work and research. Then he said what do you think? And I said uh-huh sounds good. He' so funny. He already knows I'll need help setting it up and has offered to do it. Yay!
We've had lots of nursing changes around here. One nurse quit. One nurse is having surgery. Lately we have had 3 different nurses in here to shadow and start. While it's great because we needed shifts filled for Colby, it's always nerve wracking having new people work with Colby. We're stumbling through it and adjusting the nursing schedule as it comes along. Hoping Colby likes the new nurses. Haven't had a chance to talk to him about it. Too many people around, ha!
Remember when I won tickets to the Colts game? That was awesome. Last Thursday at Colby's school they had their annual Turkey Trot. Families are encouraged to eat lunch with the students, then walk laps around the school (inside). My kid neither eats nor walks, but hey, I'm a team player so I went. Signed up to win a food basket. The school was giving away 3. And I won on! That food basket is ginormous! I hit the jackpot! The turkey was too big to fit in my tiny freezer. How lucky am I lately?!
Not very. Went out to go to work Saturday morning and had a flat tire. I've never walked out and had a flat tire. I didn't panic-I didn't lose my mind. It's all good. Borrowed a vehicle from the ex to get to work. Called my daddy. He fixed the tire while I was at work. Bing bang boom, flat tire no longer an issue.
Ok, it's 10:00. Colby is waiting for his Harry Potter read for the night and I have clothes in the dryer to be folded. More blogging and updates soon. Going to be a busy week. Much Turkey Day prep work to do. I'm hosting! Lord have mercy. Will have 8 people crammed into this little apartment. I can do this. I can do this. Just hope the toilet doesn't overflow like it did a couple years ago at Christmas. Nothing says Happy Holidays like plunging the commode. Hoping the plumbing gods smile down on us Thursday.
Sunday, November 23, 2014
Friday, November 14, 2014
LONG WEEK, HARD DAY, CALGON TAKE ME AWAY
Friday night, 8:20. I'm in Colby's room typing on this very petite keyboard on this small keyboard. Yep, my computer is definitely effed up. Don't know what else to do except get a new one. So if this blog is full of typos, forgive me and deal with it. Remember, tiny keyboard. Colby is lying in his bed, AFO's and hand splints on. Trying to get him, again, to watch the first Harry Potter movie. He's not having it. We just read the book, why doesn't he want to watch the movie?! Maybe he doesn't like English accents? Who knows. It's at the point where the talking hat is picking which house the students will go. Colby really doesn't care. I should post a video of him whining and looking everywhere but the TV screen. Then you would understand how I can tell what Colby is trying to tell me most of the time. Hold on while I find him something else. Okay, let's see if he'll tolerate Ice Age until I can get this blog done.
This week has been full of ups and downs, with a focus on downs. I know I shouldn't focus on the negative. I know I have many blessings in my life, and when you "look at the big picture" we don't have it half bad around here. There are a lot of people around me who are going through issues much more serious than our problems currently. I have friends who are missing loved ones who have passed away within the last few months. I wish I could find something to say to help comfort them. Seems I always fall short. I have friends going through surgeries. The nurse who goes to school with Colby has been sick. He missed 4 days this week, meaning Colby has missed school and I had to miss work today. Today is a hard day for me. November 14, the day we received Colby's SMA diagnosis. Very hard to believe that was 12 years ago. From that day forward, our lives were changed forever. I'm not saying changed for the bad. There have been lots of joyful, wonderful moments over the years. Been a lot of complicated, difficult ones, too. So here I sit, in this little bedroom in this little apartment, on this little keyboard, a single mom to a special needs child. Wow, didn't see any of that coming my way. Every November 14 is hard on me. I say I won't let it get to me. It's just another Friday or Tuesday or whatever. But we all have days, joyous and shitty, that stand out, and today just happens to be a shitty one for me. Glad this day is almost over.
We (the SMA community) received a shock this week. There is a sweet, wonderful family that lives up East. They are mourning the loss of their son. We're all so saddened and shocked to hear of his passing. This family is very active in the SMA world. I cannot find enough "good" adjectives to describe them. She is the best mom EVER because the boy who passed away had SMA Type I, just like Colby, AND an older brother with SMA Type I also. I have learned so much over the years from this family. By following their lead, we've learned how to "live" with Colby's disorder, not just exist with it, trudging through life. This family took their boys to camp, parades, outings, school, etc. Always so willing to offer advice and support to other SMA families. I don't know the details. Not really sure I want to know. All I know is it sucks. I wish I could do more. I honestly can't imagine what this family is going through. I know the big brother will miss his little brother terribly. How do you even begin to move forward after such a loss? I have no idea.
I'm not going to lie, I just wanted to check out for a couple of days. Wanted to get in my van, start driving, and keep going until I had no gas.Wherever I ended up, fine. But get real, I wouldn't make it 2 miles up the road without my sweet boy as my sidekick, so that wasn't an option. Then I thought, screw it, I'm going to get drunk, really, really, snot-slinging drunk. Once I gave it a little more thought, that didn't seem like the answer either. What they say is true, hangovers are a bitch when you're over 40. Plus there's been a lot of time we haven't had a nurse this week, so I really needed to be on my toes so I could care for sweet boy. Plus I thought maybe a tribute to this wonderful SMA family would be to cry when I needed to, but keep pushing forward. Be the very best mama I can be for Colby. Can't do that if you're drunk\and or hungover. Trust me, I know, learned that several years ago. So I've spent extra time with Colby. Not only being in the same apartment with him, but taking the extra time to really talk to Colby and spend that QT with him. That felt like the right thing to do and that's what I've been doing.
Praying that the new nurse shows up tomorrow at 8AM sharp. Not in the mood for any nursing BS so for here sake and mine, she needs to be on time and ready to learn Mama's way of taking care of Colby. She did a shadowing shift last weekend to get a feel for the in's and out's of Colby care. I didn't spend a lot of time with her because I was at work. We shall see.
Okay, time to get kid in bed, then I'm going to take a steaming hot bubble bath. Because I deserve it. More blogging soon Hopefully it will be a bit more upbeat.
This week has been full of ups and downs, with a focus on downs. I know I shouldn't focus on the negative. I know I have many blessings in my life, and when you "look at the big picture" we don't have it half bad around here. There are a lot of people around me who are going through issues much more serious than our problems currently. I have friends who are missing loved ones who have passed away within the last few months. I wish I could find something to say to help comfort them. Seems I always fall short. I have friends going through surgeries. The nurse who goes to school with Colby has been sick. He missed 4 days this week, meaning Colby has missed school and I had to miss work today. Today is a hard day for me. November 14, the day we received Colby's SMA diagnosis. Very hard to believe that was 12 years ago. From that day forward, our lives were changed forever. I'm not saying changed for the bad. There have been lots of joyful, wonderful moments over the years. Been a lot of complicated, difficult ones, too. So here I sit, in this little bedroom in this little apartment, on this little keyboard, a single mom to a special needs child. Wow, didn't see any of that coming my way. Every November 14 is hard on me. I say I won't let it get to me. It's just another Friday or Tuesday or whatever. But we all have days, joyous and shitty, that stand out, and today just happens to be a shitty one for me. Glad this day is almost over.
We (the SMA community) received a shock this week. There is a sweet, wonderful family that lives up East. They are mourning the loss of their son. We're all so saddened and shocked to hear of his passing. This family is very active in the SMA world. I cannot find enough "good" adjectives to describe them. She is the best mom EVER because the boy who passed away had SMA Type I, just like Colby, AND an older brother with SMA Type I also. I have learned so much over the years from this family. By following their lead, we've learned how to "live" with Colby's disorder, not just exist with it, trudging through life. This family took their boys to camp, parades, outings, school, etc. Always so willing to offer advice and support to other SMA families. I don't know the details. Not really sure I want to know. All I know is it sucks. I wish I could do more. I honestly can't imagine what this family is going through. I know the big brother will miss his little brother terribly. How do you even begin to move forward after such a loss? I have no idea.
I'm not going to lie, I just wanted to check out for a couple of days. Wanted to get in my van, start driving, and keep going until I had no gas.Wherever I ended up, fine. But get real, I wouldn't make it 2 miles up the road without my sweet boy as my sidekick, so that wasn't an option. Then I thought, screw it, I'm going to get drunk, really, really, snot-slinging drunk. Once I gave it a little more thought, that didn't seem like the answer either. What they say is true, hangovers are a bitch when you're over 40. Plus there's been a lot of time we haven't had a nurse this week, so I really needed to be on my toes so I could care for sweet boy. Plus I thought maybe a tribute to this wonderful SMA family would be to cry when I needed to, but keep pushing forward. Be the very best mama I can be for Colby. Can't do that if you're drunk\and or hungover. Trust me, I know, learned that several years ago. So I've spent extra time with Colby. Not only being in the same apartment with him, but taking the extra time to really talk to Colby and spend that QT with him. That felt like the right thing to do and that's what I've been doing.
Praying that the new nurse shows up tomorrow at 8AM sharp. Not in the mood for any nursing BS so for here sake and mine, she needs to be on time and ready to learn Mama's way of taking care of Colby. She did a shadowing shift last weekend to get a feel for the in's and out's of Colby care. I didn't spend a lot of time with her because I was at work. We shall see.
Okay, time to get kid in bed, then I'm going to take a steaming hot bubble bath. Because I deserve it. More blogging soon Hopefully it will be a bit more upbeat.
Monday, November 10, 2014
IT'S MONDAY - LET'S GET GOING AND HAVE A GREAT, PRODUCTIVE WEEK - OR AT LEAST TRY
Good Monday morning, blog readers! Time
to chug down some coffee and get this week started, don't you think?
Here's the latest with us.
There has been a change in plans for
today. Colby's nurse called in sick. I talked to him and he sounded
horrible. So yes, I think he is legitimately sick. He won't be coming
in today, which means no school for Colby. This also means I won't
have a nurse all day, but that's okay. I'm getting rather used to not
having nursing. Been working with the agency to get empty shifts
filled, but it's not as easy as it sounds. We haven't had Colby's
nursing schedule filled in months. Then we had one nurse quit and
another is having surgery soon. Uh, yeah, we need to get some more
nursing peeps in here to cover these empty shifts, like ASAP pronto.
Having nursing help in our home is not the magic answer some people
think it is. It comes with its own issues and problems, trust me.
Makes me very thankful for the great nurses we do have. This is the
first sick day Nurse Dave has taken since he started working for
Colby in July. Hope he gets better and can make it in tomorrow.
Took Colby to Cincinnati Friday for a
follow-up appointment with the spine surgeon. Colby got the “all
clear.” Yay! They took x-rays and the surgeon looked at Colby's
back/incision. He said everything is right on track, looks great, and
gave Colby the okay to resume activities to what we were doing
pre-surgery. Surgeon said the only thing Colby wasn't allowed to do
is sky diving and bungee jumping. Haha, I think we can handle those
restrictions. So I started giving Colby extra PT on his hips and wow,
he is stiff! It's going to take some work to get him back to where he
was. Hoping it's not too late and that Colby's hips haven't
contractured. That would suck big time. We got stuck in traffic on
the way home. Uggggg, that's so frustrating. But I tried to keep in
mind we weren't the ones in the accident. We didn't get hurt or the
van didn't get damaged, and that's what really mattered. But it was
still frustrating, ha!
Colby's g-tube has been leaking lately
(insert big sigh.) This is new. In 12 years, Colby has never had an
issue with anything digestion-related. This is saying something
because many SMA kiddos have motility issues. My guess is the size of
his Mic-Key button needs to be changed. That's the way he eats. You
stick an extension and syringe in the Mic-Key button and pour in his
food, straight to his belly. Colby eats nothing by mouth. He only
gets to taste foods occasionally. So if it's leaking and he isn't
getting all the nutrition he needs, that's a big deal. Will start
making some calls on this issue today. Can't have that stinky food
leaking out, that's just disgusting.
Colby and I have finished reading the
first Harry Potter book. I was so excited to watch the movie with
him. Well, he hated it. Within half an hour, he was crying. When
Harry is on platform 9-3/4 getting ready to go to Hogwarts, the tears
began. Oh sweet boy. Sometimes I just don't know about that kid. I
knew he'd love it! Wrong, wrong, wrong. Maybe we'll try again. We
watched it Friday after being gone to Cincy all day. We were worn
out, so maybe Colby just needed his familiar Spongebob and wasn't in
the mood to try anything new. The nurse and I gave Colby a hair cut
and bath last night. Not exactly an easy task, but it definitely
needed to be done.
As for me, I have much to do this week.
Many, many phone calls to make, not just Mic-key button issues.
Booooo. I have some paperwork/mail to go through. Getting ready to
start a load of laundry and get boy up for the day. I'm also working
extra days this week, so I'll need to get these phone calls and other
bullcrap stuff done before Wednesday. I've been trying to eat
healthier/lose weight and you know what, it ain't easy! Incredibly
frustrating as a matter of fact. There's measuring portions, chopping
veggies, reading labels when grocery shopping, finding time to
exercise. It's like having a 3rd job around here. 1st
job-full time mommy to Colby, 2nd job-pre pack at the
hospital, 3rd job-start taking better care of myself. So
time consuming and not easy giving in to stress eating and cravings,
but hoping it'll be worth it. I've lost 4 pounds in 4 weeks, which is
right on track for what “they” say is healthy weight loss. Hoping
I can keep it up and take the time to take care of myself. Not easy.
Not easy at all, but I must do it to be the best mama I can be to
Colby. And I'm not going to lie, I want to get back in my skinny
jeans!
Wrapping this up now. I hear Colby back
there, awake and obviously wanting some attention. Will blog more in
a few days when I have time and/or there is something to blog about
for all you good peeps to read! Bye for now.
Sunday, November 2, 2014
BUSY THEN LAZY - SOMEWHAT LAZY - WONDERFUL TO GET SOME REST
So what have we been up to this
weekend? As little as possible! Seems like ever since we've been home
from the hospital it's been busier than usual around here. Like
cray-cray, I can't get all this stuff done, there's not enough time
in the day, can't talk now I'm busy, somebody get me some vodka and
an assistant kind of busy. But finally seems like it has finally
lightened up a bit. Thank goodness.
This was Colby's first week back to
school. He did well, but by the end of the week he was super sleepy
and a bit grumpy. I kept reminding him, hey kid, you're the one who
wanted to go back to school. They did trick-or-treat at his school on
Thursday. Always such a fun time! Check out the world's most awesome,
cutest Beetlejuice ever! I went as Lydia Deetz and Colby's nurse went
as the Brawny man. We didn't go out trick-or-treating Friday night.
Too cold and windy, didn't have a nurse to go with us, and I think
Colby's getting a little big/old for trick-or-treat. So we'll
probably stick with the school thing from now on and that's about it.
Colby's high school peer buddies helped him do a scary
jack-o-lantern. It looked fantastic until the squirrels came along
and ate through its face. Yep, took a chunk out of that poor
pumpkin's mouth and nose. Darn tree rats! We stuck it back together
with toothpicks haha. Then Colby's daddy helped him make a funny face
pumpkin. Last I checked it was still intact. Introduced Colby to some
scary movies Friday night. We watched a little of Halloween II. He
didn't seemed impressed. We also watched The Lost Boys, and I could
tell Colby was more interested in that. Maybe next year for Michael
Myers.
Friends to the rescue! I know I've said
it many times before, but I would be so completely worthless without
my friends. My parents too, of course, but lately my friends have
stepped up their awesomeness also. Let's just say I'm a bit on the
technology challenged time. A couple weeks ago my computer went
ca-poo-ey. It wouldn't shut down, then it wouldn't turn off. Had to
unplug it from the wall. Then when I turned it back on, it started
doing this self check/scan thing. Then it got stuck doing that. I
just knew my computer was dying a slow death and that I was going to
lose everything. Called my computer buddy Jimmy. He said try this,
try that. We finally got the computer to reboot. So I ran out and got
memory sticks and was able to back up all my documents and pictures.
Thank God. Note to self, start doing more regular backups, duh. While
we went to Cincinnati, he took my computer home and fixed it.
Eventually I want to get a laptop and get rid of this bulky computer,
but not just yet. I'm old school. I use equipment until it absolutely
stops working or is so obsolete I have no choice but to get new. Then
there was my cell phone. That poor thing really did die a horrible
death. Drowning. It was giving me fits anyways. The front case fell
off, and I couldn't get it snapped back on. So the battery was
running down constantly, along with I was hanging up on people
accidentally, butt dialing people, etc. It was awful. Then after I
dropped it in the water, it really freaked out. (Yes, I swear it was
an accident!) I could get a text but couldn't send one. I could make
a call but couldn't get one. It was ridiculous. And my friend Rhonda
comes along and gives me her old iPhone 4. Sweet! I never would've
spent the money on an iPhone. I was so grateful not to have to go out
and get a new phone, and the fact that it's an iPhone, bonus! Thank
you, friends, I'd be up Poop Creek without you.
It hasn't been all work, work, work
around here. I've been able to do some fun things, too. A couple of
weeks ago I won tickets to a Colts game. Do you hear me?! I got to go
to a Colts game for FREE! You can't beat that with a stick. I try to
go to a Colts game once a year. For some reason didn't go last year.
Oh wait, I know the reason, my money for tickets! I took my friend
Chris. She had never been to an NFL game before, so she was excited,
too. We had a great time, and it was even better when the Colts shut
out the Bengals. Who dey, losers, that's who. Ha! Last Sunday some
friends and I went to see Dracula. I've been wanting to see it for
years. I had never been to Actors Theater. It was awesome! Scary as
shit and totally fantastic. Loved it. So glad we went.
So this weekend we needed to catch up
on sleep. Oh wonderful, peaceful, much needed sleep. I couldn't tell
you the last time I went to bed and didn't set my alarm. And last
night we got an extra hour from setting the clocks back, how happy is
this mama right now? The only things I wanted to get done yesterday
were do a load of laundry, update my blog and go through the mail.
Well, 1 out of 3 ain't bad. Got the laundry done. Now obviously I'm
getting the blog done. Still need to get the mail sorted. I know I
have bills in there to pay (bummer) so that WILL get done today.
Think I'll change out Colby's Mic-Key button this morning. It's been
a little leaky recently. That's his g-tube/feeding button for those
who aren't familiar with the term.
Wow, I can get chatty on a blog update.
So I'll wind this up for now. Colby is off school Monday and Tuesday.
I have an endocrinology appt this week, along with an eye doctor
appt. Then we take Colby to see the spine surgeon on Friday. Hoping
to get the post-surgery all-clear from him. Can't imagine why he
wouldn't. That sweet boy is something else. Takes a licking and keeps
on ticking. Because of him I want to do more, to do better. People
say I'm “amazing” for what I do to take care of him. Not really.
He's the amazing one. He's strong, determined, adorable and takes
every adversity in his life and somehow just handles it. With humor
and extreme cuteness, I might add. I simply follow his lead. So lucky
to be that child's mama! Thankful every day!


Tuesday, October 28, 2014
COLBY UPDATE AND FUNDRAISING UPDATE - Don't forget you need a new spatula or cookie sheet!
It's been a while since I've blogged, I
know. I don't like going over a week without blogging, and you know
exactly what I'm going to say. We've been busy, really busy. Hey,
it's true, really true. So let's get caught up on all things Amy and
Colby, shall we?
Starting with Colby, of course. He's
doing great! Last week we had appts at Cincinnati Children's. These
were on the calendar months before he got sick recently. Went up on
Tuesday. First we saw Pulmonary. They tested the pressures and leak
in Colby's trach, putting various amounts of water in his cuff. Turns
out he was losing a lot of pressure, meaning he wasn't getting the
total benefit of his vent settings. The compromise is, we put as much
water in the cuff that still allows Colby to verbalize, 2 mL seems to
do nicely. The pulmonologist thought Colby looked great. He said hey,
if you want to send him back to school, okay by me. Then off to
Neurology. We saw the dietitian. She thinks Colby needs more protein
in his diet. I just did a major dietary overhaul to Colby's formula
recipe back in May. So I don't know if I agree with her or not. As
soon as I have some time, I'll sit down and reevaluate. The
neurologist thought Colby looked great, too. Dad, Colby and I spent
the night up there because Colby then had an ophthalmology appt on
Wed morning. His eyes are fine, his prescription remains unchanged.
Love getting those good reports. They make the long, tiring,
worrisome trip much easier to handle. We were all simply exhausted by
the time we got home Wednesday afternoon, 3:00ish. Took a whole day
to unpack, reorganized and rested. Next week we go see the spine
surgeon for a post-surgery follow up. That'll be a much easier trip,
up and back in one day. And I know we'll get a good report then, too,
because let's face it, my sweet boy is a rock star stud!
Yesterday was Colby's first day back to
school since mid-September. Yikes! He seemed fine and excited to get
back to school. I was a nervous wreck. And in typical kickass Colby
fashion, he did great. I stayed home and cleaned house while he was
gone, along with the help of my sweet, wonderful mama. This place was
super gross dirty. Hadn't been cleaned really well since we both got
sick. Can you say nasty?! But it' sparkly clean now. So nice to get
one chore completely done and off the to-do list. I've changed
Colby's school schedule. He'll be going on Mon, Wed, Thurs and Fri
now. Tuesdays we're playing hooky from school so we can take Colby
swimming. It was just too much trying to get it all coordinated with
him going to school on Tuesdays. Hey, don't judge me. Just trying to
figure out what's best for all parties involved. And in my humble
opinion, which after all is the opinion that matters, we're all
better off if Colby doesn't go to school on Tuesdays. End of story.
Let's talk fundraising! THANK YOU to
all who attended the Pampered Chef cooking show last week. I was
unable to go, but hear it went great. There were about 10 people in
attendance and the sales are rolling in. If you haven't placed your
order yet, THERE'S STILL TIME! Orders need to be in by the end of the
day Thursday, October 30. Here is the link to order online:
http://tinyurl.com/ColbyRussSMA.
Colby and I will receive 25% of
the sales from this fundraiser. That's a significant amount of change
for our “get-out-of-this-tiny-apartment-and-into-a-house” fund.
The Pampered Chef special for October is 20% off all
stoneware and metal bake ware.
That's a heck of a sale! Ask anyone, they'll tell you, Pampered Chef
stones and bake ware are fabulous and really are must-haves for your
cooking needs. Everyone should have some Pampered Chef in their
kitchen - it's wonderful, quality stuff. Just sayin'.
Better
get going. Want to get my shower before the nurse gets here at 8:00.
I have a hair cut appt today. Then we'll take Colby swimming. Then
Colby will need a bath to get the salt water off. School pictures are
tomorrow, and at this point, I have no idea what he's wearing. Might
also trim up his hair a little. It's looking a little ratty. And oh
yeah, I'm going in to work a few hours tonight. We're super busy at
the hospital. Imagine that, a hospital really busy during cold and
flu season?! Okay, there's your update for now. Must get busy with
our Tuesday. More soon, it won't be a week before I blog again, I
promise.
Monday, October 20, 2014
FUNDRAISER INFO - Who needs a skillet??
Our Next Get-a-House Fundraiser
Profits from this fundraiser will benefit our
"we-have-outgrown-our-tiny-apartment-and need-a-handicap-accessible-home"
fund. In case you are reading this blog for the first time, here is our story:
Colby was diagnosed with Spinal Muscular Atrophy (SMA) Type
1 at four months of age. Although he had a life expectancy of 2 years, Colby
just celebrated his 12th birthday in July. He is trach/vent
dependent and g-tube dependent, along with requiring a wheelchair for mobility.
Colby requires various braces and supports to help with contractures and assist
in positioning. He is nonverbal but currently uses a communication system with
eye gaze technology. He is followed by a pulmonologist, neurologist,
cardiologist, orthopedist, dietician and physical therapist at Cincinnati
Children’s Hospital. Colby had spinal fusion surgery in June, requiring a 16-day
hospital stay. Colby also had a recent respiratory illness and spent 11 days at
Cincinnati Children's.
Colby's mom, Amy, is a single parent. She works part time so
she can be available for Colby’s hands-on care and appointments.
This fundraiser is designated to assist in the purchase of a
house that can be made accessible for Colby.
Profits will be 25% of all
purchases. Also for every cooking show booked – an additional $5.00 will be
added to the proceeds.
OCTOBER PAMPERED CHEF
SPECIAL:
ALL STONEWARE AND
METAL BAKEWARE 20% OFF
Your family and friends may shop online at: http://tinyurl.com/ColbyRussSMA
All deliveries in the local Kentuckiana area will be provided.
If you wish to purchase and live outside the area, please select direct
shipping and your order will be sent directly to you. This will allow everyone
to share this fundraiser with all family and friends.
If you would prefer – you may contact Candy Fox, Consultant
with Pampered Chef, at 502-445-0027 to place your order via phone. Her e-mail
is xofden@aol.com if you want to send her your order that way or have any
specific Pampered Chef questions. Payment methods include Visa, Mastercard,
Discover and American Express. Make checks payable to Candy Fox.
All orders are due by October 31, 2014
From Amy:
*I would like to thank everyone who has supported us and our
fundraisers in the past. Our recent Origami Owl fundraiser profited around $250
for our house fund. Slowly but surely, we will reach our goal!
**I would also like to give a special shout out thanks to my
friends at my old job for organizing this Pampered Chef fundraiser. I haven't
had to do much for it except spread the word. Thanks GCCS gang. Love ya
bunches.
Thursday, October 16, 2014
MUCH NEEDED REST AND NORMALCY
It's been 8 days since we've been home from the hospital,
and I feel we've finally gotten around to our "normal" routine.
Saturday night was the last night I had to get up and do a respiratory treatment
at 2AM. Colby is also finished with his antibiotics. And I must brag a bit and say,
Colby is doing very well. So nice to hear the whoosh-whoosh-whoosh of clear
lungs instead of the crackles and rubs we heard for over two weeks. Again, let
me just say how incredibly happy we are to be out of that hospital and back
home. I appreciate all that Cincinnati Children's did for Colby. The nurses and
respiratory therapists were all, for the most part, pretty darn good. I didn't
have to throw any big fits to get something fixed. But I'm so glad to be out of
that hospital, you have no idea. I'm sure Colby is too. After all, he was the
one with the illness.
There are two things I've noticed with Colby's new vent mode
and settings. #1-his heart rate is lower. Much lower than it used to be. I
guess that's a good thing? His heart isn't having to work as hard and he's more
comfortable. #2-Colby can't jabber and make noises like he could before. He
still jabbers but it's not nearly as loud. Almost sounds like he has a sore
throat. I hate this. Absolutely hate it. I want to run back there and put the
vent setting back where they were. But that's not the answer, so we'll all have
to get used to his new, not-so-loud, hoarse jabbers. Good God, SMA sucks so
much there are no words to describe it.
Monday the nurse and I took Colby to look for Halloween
costumes. If you know us at all, we take our dressing up for Halloween pretty
darn seriously. So we have Colby's picked out. And no, I'm not telling, it's a
surprise. Now I have to decide if I'm going to dress up or not. I've been
invited to two Halloween parties, on different weekends, and guess what? No
nursing coverage for either night. That blows. But I could dress up and go to
school with Colby the day they have trick-or-treating. That's what I did last
year, just tagged along with Colby and his nurse. Can't decide yet.
Monday night I hit a wall. The "I've been stressed,
worried, and have missed way too much sleep" wall. It was 9:30PM and I
honestly couldn't function. I was so, so, so, so tired. I told the nurse, I
have to get some sleep. She said no problem, she would finish tucking in Colby.
I swear I got ready for bed and was zonked completely out by 9:45. Slept until
Colby's feeding pump went off at 7AM the next morning. Man, did I ever need
that sleep.
Tuesday we took Colby swimming for the first time since I
don't know when. He loved it. He looked happy and content floating around in
the water. Taking him swimming is a big pain in the patootey, but very worth
it. Then when the night nurse got here we gave him a bath to get all the salt
water off of him. Tuesday it was his night to zonk out. By the time I walked
the nurse to the door, chatted with her a couple of minutes, and went back in
to tuck in Colby, he was already snoozing away. Play hard, sleep hard, guess
that's our motto.
I have struggled back and forth and back and forth on
whether or not to send Colby back to school or put him on home/hospital instruction
for a while. I know when we were at Cincy I said home/hospital all the way. But
of course I'm going to think that when he's in the middle of an illness! I was
freaking out just a tad. This has been a very difficult decision. Finally, I
asked Colby, do you want to go back to school, yes or no, holding out my hands
like always so he can use his eyes and answer. He picked YES! I was shocked! So
shocked I asked him 3 times, and each time his answer was yes. The nurse said,
how many times are you going to ask Colby that? My answer was, as many times as
it takes until I get the answer I want, haha. But I asked him again this
morning, and he definitely said YES to going back to school. So, Mr. ColbyRuss
BigBoyPants is returning to school Monday, October 27. Final answer. I think.Unless I freak out and change my mind between now and then.
This blog entry is getting lengthy so I'll wrap it up for
now. Next blog entry will be to tell you all about the Pampered Chef fundraiser
we're having to fatten up that "get Amy and Colby a house and out of their
tiny apartment" fund. Bye for now. Realize your blessings. Count them. Be
thankful for them. Should make you smile, and smiling is gooooood.
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