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April 12, 2012, Thursday Surgery #21 Over Erinne had 3 ligaments on each side of her hips released (severed) on Tuesday 4/10. The surgery went well and there were no complications. Erinne spent one night in the hospital and came home yesterday. Last night she slept for over 18 hours! While she is still very sore from the surgery (#21 if you are keeping track), her chronic pain is better. Instead of being a 20 on a scale of 1-10 (which she was every day), she is now on the pain scale at an 8 out of 10. I know that still sounds awful, but I am actually happy with that, being that she is just 48 hours post op. I did a dressing/bandage change last night, which was traumatic (for her). The real test of how much pain she has comes tomorrow when we head out for a doctor's appointment. She starts back in physical therapy in the pool on Monday. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Monday, March 19, 2012 Pain and More Pain The nerve block didn't work, meaning the pain is not coming from a pinched nerve. The amount of daily pain she lives with would bring an ordinary adult to their knees. I hate seeing her like this and I would do anything just to make her pain go away. She is looking at another surgery now, to release (cut) her hip abductor ligaments. The surgeon is fairly confident that she will have pain relief from this surgery. I don't have any choice but to believe this surgeon. The surgery is scheduled for April 10th. In the meantime, she is on another strong pain medicine. It doesn't take away the pain, just makes it a little easier to bear. On a daily basis, she can be heard in her bedroom, moaning and crying from the pain. Not too many smiles coming from her, either. So sad. Please say a prayer for my Rosie, that this suffering will soon stop. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ March 3, 3012 Saturday Nerve Block Done; Now We Wait Erinne had her nerve block on her tailbone done yesterday. Now we wait a week to see if it actually hits the spots she is having pain in. Today she is hurting quite a bit and doesn't feel good, which I attribute to the anesthesia and a sore throat which is probably from the intubation. She is pretty miserable all the way around and is taking her second nap of the day.
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February 20, 2012 Monday Wow -- Where Has The Time Gone? I can't believe it has been a month since I last posted. Life has been very busy and it seems like the only way I was able to keep updates going was through Facebook (send me a FB request if you'd like). Erinne has lost quite a bit of ground in her recovery. She never made it back to school except for a few hours. She has developed more pain issues starting around the 1/29 or so and it has been all downhill from there. She can't get out of bed, can't sit in her wheelchair and can't go anywhere except (very painfully) to doctors' appts. No one can seem to find out what is wrong. It seems like a pinched nerve (like a sciatica) is the problem. She is going to have another nerve block done on 3-2-12 but I want to get to the root of the problem rather than just getting a block done every couple of months. Erinne is depressed and tired of being in pain. And very tired of being stuck at home. I don't blame her. I really don't know what caused the problem, other than being jarred a bit during a hockey game on 1/29. So life has not been 'normal' for her since her surgery December 8th -- can you believe it? Believe me -- it sucks. I hope to have better news after 3-2-12 to share with you.
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Wednesday, January 18, 2012 Trying To Get Back In The Swing Of Things..... Erinne is now 2 weeks past her jaw surgery and 6 weeks past her spine surgery. She still is dealing with pain, albeit less than she had right after surgery. Her stamina and strength still are not back to normal and her face is still swollen. It always worries me when she loses strength and stamina because sometimes I fear she may never get back to 'normal'. She has returned to school, half-days. Finals are next week. Her teachers have been GREAT about keeping homework to a minimum (omitting the 'busy' work and doing just enough to show she understands the materials) and giving her plenty of time to get things completed. She starts back to hockey this Saturday and while I don't think she will have enough strength to play the whole game, at least trying to do something fun and normal will no doubt lift her spirits. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Wednesday, January 11, 2012 Erinne Surgery #2, 6 Days Post Op Erinne had her second surgery on Jan 5th. That surgery took out 6 teeth and 4 jaw plates. It was more painful than expected. Erinne also developed cellulitis in her right cheek (inflammation/infection of the cells - very painful) and an aspiration pneumonia from the stuff that ran down her throat during surgery. This is definitely a setback. She is on an antibiotic to get rid of both. If I had to judge by how she is now, I would say she is not ready to return to school, as planned, on January 17th. This past month has been a lot of pain -- some of it unexpected. She seems depressed -- definitely tired of being laid up. I know she misses school too. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ December 31, 2011Erinne: 3 weeks + 2 days post op Saw her surgeon on Wednesday who was pleased with how her incision looks. Still having issues with muscle spasms and pain, which will resolve with time. Strength is slowly returning. Next up: On Jan 5th, Erinne will be back at the hospital to have 4 wisdom teeth dug out, 2 other teeth pulled and the plates in her jaws removed. (I know -- doesn't seem very fair, does it?) Another overnight stay in the PICU is planned. Seems like she should win the lottery or something after all she has endured this month.
My
2012 Prayer: Please God, may THIS be the
year of the cure for SMA. I want my daughter to have an
opportunity to grow up. Please.
Happy
New Year!
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December 22, 2011 Thursday Erinne Spinal fusion surgery - Post Op day 14: She has
finally turned the corner and we are
managing to stay on top of the pain.
She still is very weak and has a
hard time holding up her head and
doing homework. She fatigues easily
and is napping 2-3 times a day. BUT,
we're finally on top of the pain and
that is what is important. We are
measuring improvements in baby
steps. She sat up in her chair for
almost an hour, until her head
became too heavy to hold up. She
still is very weak. Pain is mostly
controlled, and muscle spasms are
still happening 2-3 times a day. We
won't be able to go to church
tomorrow, but that's okay. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Saturday, December 17, 2011 Post Op Day 9 -- Unchanged = Not Good We just can't seem to get a handle on this pain. I spoke with a pain specialist on Friday and we are trying something else to get Erinne some pain relief. It is sad to see her so miserable. Every time she gets out of bed (to shower or use the bathroom) her pain levels just shoot up. With a doctor's appointment on Wednesday, she is never going to tolerate the ride to the doctor's office if she can't tolerate being up a little more. Sigh! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tuesday, December 13, 2011 Day 5 Post Op Spinal Fusion Pain management continues to be a problem for Erinne. The doctor has increased the amount of medication Erinne is taking but she is still having a hard time getting on top of the pain. I feel so bad for her. She did get in the shower yesterday right before I removed her dressing and she said that the shower felt wonderful (not the dressing change!) Getting mail brightens her day. If you'd like to send her a card, our address is 8440 Orhan St, Canton, MI 48187. Hoping for a better day tomorrow.....
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December
12, 2011 Monday 4th Day Post Op - Ouch! Pain is the word of the day. Erinne is having a hard time managing her pain on the pain meds we were send home with. I put in a call to her doctor, who is checking into what else she can prescribe. Erinne has be out of bed and up doing homework (no rest from that!) and playing video games, but she tires easily and needs to catch up on her beauty sleep (she is up a lot at night with her pain.) I am praying that she will turn the corner soon and start feeling a little less pain. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
December 10, 2011, Saturday Day 2, Post Op Spinal Fusion Erinne actually got out of bed yesterday, her first day post op, and went tooling down the halls in her wheelchair. Even made it downstairs to the gift shop. She sort of stirred things up on the incision and had a bit of bleeding going on from the movement. But the doctors weren't concerned. Consequently, since she did so well yesterday, they LET HER GO HOME TODAY!!!! Two days ahead of schedule!! She is very happy to be home. She was very tired from the drive home, but happy to be back in her own bed. I am very relieved to be home too -- maybe now I can get some sleep! She said she was bored at the hospital and that's why she pushed herself to come home. :-) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Friday, December 9, 2011
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ November 15, 2011 Oops! Missed a month! Somehow I missed doing an October update! Sorry about that. Erinne had a nerve block done on her tailbone/coccyx last Friday 11/11/11. So far she is still pain free in that area. Her spinal fusion/back surgery has been rescheduled for December 8, 2011. A couple of days post op she will have her 4 wisdom teeth, 2 incisors and the plates in her jaw removed. She'll be in the hospital 5-6 days. The bonus is that it is in the brand new children's hospital in Ann Arbor. I toured the new hospital last week and it is beautiful! I don't know if she will make it back to school before Christmas Break starts on the 23rd or not. Probably not. She is still keeping up with her aqua therapy and loves the back pain relief it provides. Hockey is on-going too. Her team is undefeated. This past weekend she was named 2nd star of the game and got 2 assists. She was so excited (and very tired) afterwards. First quarter of school is done and she did pretty well. She is making new friends -- many of them juniors and seniors because the freshmen seem to be very shy. Many of the kids at school are sporting an Erinne Wristband. It is so nice seeing them support her. I'll update again just prior to surgery. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
September 30, 2011
New Homeowners!!
Got the keys today! We are now the
proud owners of a totally wheelchair
accessible house! (I must admit -- a
bit scary too!) I have 4 days to get
everything moved, which is a
daunting task. Erinne is antsy to
roast marshmallows in the family
room (silly girl). Shortly we will
have a track ceiling lift installed
so that Erinne can easily be moved
from her room to the bathroom and
hallway. A whole house generator is
next on the list. :) Latte has a
yard and dog neighbors (she's not
quite sure what to do with them). We
owe a HUGE thank you to Canton
Township -- THANK YOU SO MUCH!! Erinne had her hockey banquet last weekend. She was a finalist for Defenseman of the Year and won the Sportsmanship Award. I am so proud of her! She is an awesome hockey player! Her season starts tomorrow, Oct. 1st and she is geeked!
High school continues to go well for
Erinne. She has just finished her
4th week and has such a wonderful
group of teachers. Aqua
therapy is continuing twice a week,
but in a holding pattern for the
moment while waiting for insurance
authorization. Her days are long and
taxing and she is in bed asleep
pretty early. This week she sees a pain specialist about her back and coccyx. The level of pain she tolerates on a daily basis -- and still has a smile on her face -- astounds me. Spinal fusion surgery is still a go for Nov. 22.
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September 16, 2011 Friday
An Official Freshman: All
Grown Up!
Erinne has had 2 weeks of high
school under her belt and just loves
her teachers and the whole high
school experience. Every staff
member has gone out of their way to
make her feel welcome. She has had
to make all new friends, as her
other friends were assigned to the 2
other high schools. Several of the
juniors and seniors have taken a
special liking to her. The long days
are kicking her behind, especially
with having aqua therapy on Monday
and Wednesday after school. (Aqua
therapy is the only therapy that
relieves her pain.) She goes to bed
mighty early!
Other news: Wheelchair hockey
practices have started, which makes
her very happy. Games start in
October. On September 24th, we've
been invited to watch a University
of Michigan Football Game at the Big
House from a season ticket holder's
suite. How cool is that??!! And then
a couple of weeks after that, we are
going to the Red Wing's Home Opener.
Woo Hoo!
Erinne's 13 yr old cat, Ernie, was
diagnosed with diabetes and now
requires a daily insulin injections,
but still is not doing well. So sad.
We just put his buddy and best
friend Oscar (bone cancer) down last
month. Seems like Ernie wants to
join his buddy in Kitty Heaven.
Newly rescued cat, Corbin, is eating
me out of house and home. He's gotta
be pushing 18lbs by now!
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August 28, 2011
HIGH SCHOOL!!
In just 8 days,
Erinne starts HIGH SCHOOL!! Such
exciting times! Erinne will be attending
Plymouth High School on a normal
schedule with regular classes. She is
very excited and looking forward to
meeting new friends. The principal and
faculty have gone out of their way to
personally welcome Erinne before school
even starts, and have gone out of their
way to accommodate her every need. Amy
and Mary Jo, her two 1:1 RNs from middle
school , will be accompanying her to
high school, which is a big relief for
me.
We have added a
new member to our family in the past
week. I volunteered to call the Humane
Society for a friend who was looking for
a dog and ended up finding a cat that I
wasn't even looking for! Ernie has been
very lonely since Oscar died and this
cat just seemed to be the right fit. He
was waiting 3 months at the humane
society for a new home. His name is
Corbin and he is a 5 yr old Manx -- a
cat without a tail (that is the standard
for the breed). He weighs 15 lbs (!) and
looks a lot like Oscar did. He is
adjusting to this crazy house well and
loves Erinne to death. He is not best
friends with Ernie yet, but they are
getting there. He seems to like his new
home, but is afraid of the bird (who
acts all fierce and crazy around him
with his wings extended and head
feathers erect and screeches at the cat.
Dumb bird!)
More about high
school coming soon!
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August 14, 2011
WAITING GAME
Erinne enjoyed spending the weekend
with her Cousins, Rachel, Noah and
Madeleine, as we celebrated my dad's
75th birthday. He doesn't act a day
over 60. Her back was bothering her
a bit and we need to see her
orthopedic surgeon about what we
need to do next. We see her doctor
tomorrow. This month is jam packed
with doctor appointments, getting
everything done before school
starts. Hard to believe she'll be a
freshman in high school soon!
The serial casting was a bust
after casting her elbow twice. She
is still swimming and doing GREAT!
We are talking about casting her
ankles to get them to go a little
past 90*. We've had good luck before
doing this. But I don't want to give
up swimming, so I am not sure how we
can accomplish this yet. I think it
will only take 2 castings to meet
our goals.
Sad day..... had to put one of my
cats down this month. Oscar had bone
cancer. He was diagnosed last June,
so we had a little bit of time with
him before he passed. He was 13. My
other cat, Ernie, also 13, is acting
like he has diabetes and is dropping
weight. I need to take him in and
get treatment started. I can't put
another cat down this summer! Thank
goodness Latte's only problem has
been sneaking too much cat food and
too many extra pounds. That won't be
an issue anymore with Oscar gone.
Still waiting on the move.... and
waiting..... and I can't have back
surgery until the move is done....
did I ever say how much I hate
waiting?
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July 17, 2011 Sunday
Brief Update
We DO have a session in the swimming pool (yay!)
which means Erinne will have a great time
moving her legs in the water. She also has a
cast on her left arm, but not because it is
broken. We are doing serial casting, trying
to get her left arm straightened out a bit.
They will make a small cut in the cast at
the crook of her arm on Monday and put a
wedge in it, to straighten it even more and
then cut the cast off right before swim time
on Wednesday, Then after swimming, they will
put a new cast on, hopefully a little
straighter than the last one and repeat the
process all over again, maybe for 2-3 weeks.
It sure makes carrying her difficult!
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It Is Taking FOREVER!!!
You've probably been checking this journal,
wondering when the move and my surgery are
taking place. I AM TOO! This is taking
forever! I still don't have a closing date
and there are still a few things not
finished at our new house. Some of the stuff
has to go out for bids (like siding the
garage), so I don't expect them to be done
(nor need they) before we move in. But other
things do have to be finished (like
replacing the AC, and buying a refrigerator,
stove and washer/dryer. If you offered to
help, believe me, I'LL BE CALLING YOU
SOON!!!
Erinne really enjoyed camp, as always. This
year, it rained only once. She "graduated"
to the teen side of the camp (Northwood)
which thrilled her to no end! She had a new
"partner" this year (the person who is
assigned to care for her in camp) and also
met some great other partners who cared for
her friends in the cabin.
Erinne starts PT and OT (therapy) today. She
hasn't been in therapy for a couple of years
because we can't do it during the school
year and the last 4 summers I have been
recovering from surgery. Now that I have
help at home, she can go to PT & OT in Novi
(where she started out when she was 16 mos)
even after I have my surgery. She is very
excited and looking forward to it. We are
hoping one of the sessions can be in the
therapy pool <fingers crossed>.
Speaking of help at home, we have been so
blessed to have 3 outstanding women coming
to our home 7 days a week to help out. It
has taken me a long time to relinquish
control over Erinne's care, but the great
job they do with Erinne has been so worth
the wait in finding them. So I'd like to
send a BIG THANK YOU to Ashleigh, Kelli
and Stacey
for the wonderful care they give to Erinne.
They have made my life so much easier and
Erinne's life less 'boring'.
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June 19, 2011
Last Day of Middle School: She's a High
Schooler Now!
Erinne graduated from 8th grade on
Friday! So hard to believe! She now is
part of the high school youth group at
church. I think it is so important for
her to go as much as possible over the
summer so that she start to make new
friends and they get used to how to
behave around the dog.
She also played in her first All STAR
Hockey game on Saturday. She was voted
in by her peers. She was SOOO excited!
The score ended up 10-9 in favor of her
team.
Next Saturday she heads out for her week
at MDA Camp up in Lexington, MI. She
LIVES for this camp each year! Most of
her (disabled) friends are there and it
is nonstop hockey, soccer and roasting
marshmallows. (There are plenty of other
hockey players who attend camp too, so
she should have a bunch of people who
want to play sports!) Erinne is not in
to the nails, facial, make up and hair
styles that a lot of the girls like to
do up there!
While she is gone, I am going to be
packing, packing packing for our move to
our new home! If you are handy with
putting shelves or dressers together or
are a specialist in moving boxes, I
would LOVE to hear from you!! I am
having an epidural done on my back on
Monday so that I can manage the pain
better till my spinal fusion gets
scheduled.
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June 5, 2011
REEEEAALLLY BEHIND!!
I didn't realize it has been THAT long
since I posted an update for Erinne!
Geesh!
Well the most important thing is Miss
Erinne turned 14 YEARS OLD!! She has
outlived the doctor's predictions for
life expectancy by 6 years -- for that I
am extremely thankful. Unfortunately,
the one wish she has for her birthday
was to be able to see her sister, who is
8.5 mos pregnant. Claire won't see her,
because she won't see me (going on 5 yrs
now.) Erinne isn't guaranteed a tomorrow
and I sure wish her sister would realize
that, before Claire lives a life of
regrets. Claire, I know you read this
and I sure wish you would allow Erinne
to be part of your life again. She isn't
going to have many opportunities to be
an aunt. Don't take this away from her.
Refuse to see me if you must, but don't
take your anger out on Erinne ---
please. It is not healthy for the baby
either. I am asking all of my friends to
please pray for Claire, that her heart
be opened up, at least for her sister's
sake.
We didn't get to the friend Birthday
Party yet (Which is usually a blow out!)
because we decided to postpone it until
we move. Yes, we will be moving -- and
I'm looking for A LOT of help, since my
back is so messed up. We are finally
moving into a wheelchair accessible
house!! It is beautiful and it never
would have happened without Canton
Township's extensive help! We owe a debt
of gratitude to them, especially
Township Supervisor
Phil LaJoy and his incredible staff.
He made Erinne's needs his #1 priority
and made this dream a reality. We're
hoping to move in early July and then
have surgery right away. My surgery has
a 3-4 month recovery period. ugh.) PS.
We will finally have room to entertain
and have overnight guests!
Erinne continues to have pain from her
surgery/tailbone area and it is the kind
of pain that will probably never go
away. Fortunately, she is now on a
medication that manages the pain quite
well. No news on the WC front.....Blue
Cross/Blue Shield-Northwood NPN are
still playing games and can't believe
that she needs a new chair at the 4 yr.
10 mos. time frame, instead of their
minimum 5 yr mark. I can't believe
people get paid to act like morons!
Erinne has visited her new high school
-- Plymouth High School -- twice and
each time they treated her like she was
the most special visitor that every came
through the school's doors. She is so
happy and excited. They have made
exceptional accommodations for her and I
know she will do GREAT! She decided that
she was already going to attend summer
school, so she wouldn't fall behind.
WHAT A GREAT GIRL!! Unfortunately, she
won't be able to attend because of the
timing of MDA Camp and she would miss
too much school. I admire her for just
trying to squeeze it in!
Kevin has really stepped up to the plate
to help take care of his sister,
especially in light of my back hurting
so much.We also have 2 wonderful aides,
Ashleigh and Kelli, and soon to add
Stacey. They help take care of Erinne
when my back is bad and will majorly
take over when I have surgery and am on
bed rest.
Erinne's hockey team lost in the
championship round (few tears there),
and you probably know how the Red Wings
did. So we had our hockey mourning
period here for a couple of weeks. Now
we are really missing it and can't wait
for the pre-season to start back up in
September.
I'll post our new address as soon as I
have a move in date. And if you want to
help us move -- even if it is to just
run a van load over to the new house &
drop it off or put (easy) shelving units
together -- please, please let me know!
I will try not to take so long for the
next posting!
God Blessings....
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Thursday, April 28, 2011
...And Reality Steps In....
Things went really well in the hospital and
Erinne went home the next day, as we
thought. But pot holes and uneven pavement
and construction in Michigan being the mess
that it is ..... reality sets in. It is
impossible for me to drive and dodge all of
the mess that we call our roads and not
cause Erinne pain.
She did stop by school on her 4th day post
op to pick up homework (which she finished
all during her spring break -- good girl!)
said hi to friends and teachers an even had
a short lunchtime pizza party hosted buy her
favorite librarians. She lasted an hour and
was ready to go home and get out of her WC
and head to bed. She had a few brief outings
over break to the movies and to dinner, but
all in all, took it easy. Bored, bored bored
was the name of the game.
So now she is back in "full swing" (school
FT) and is still dealing with pretty regular
pain again. Post op check is next week and I
am not expecting any startling news. Now her
hips seem to be giving her quite a bit of
pain. We do A LOT of turning and
repositioning at night. Sometimes she is
awake so many times I wonder how she manages
to stay away at school (cuz I am sure having
a hard time staying awake here!) I know it
is going to be a rough morning when she asks
me to brew a strong cuppa joe and put it in
her g-tube! Whoo da thought??
We need to get the new WC issues resolved
because this one isn't fitting her well (try
putting your hiney into something you've
outgrown about 4 sizes ago!) After all, she
has has 8 growth rod surgeries on her spine
over the past 6 years while using the same
wheelchair and the insurance says it is "too
soon" to need a new chair. (Actually, it is
her long femurs, long lower legs legs and
sitting height that are causing the problem.
C'mom, people, REALLY? REALLY? Think I am
feeling my kid growth hormones?
Erinne is absolutely psyched and ready for
her beloved Red Wings to continue on to
round 2 of the STANLEY CUP FINALLY against
the San Jose Sharks. Her WC hockey team has
also advanced to their Wheeler Cup Finals.
You don't have to be a Red Wing To Bring A
Cup Home to Detroit! Her first game is the
30th and you can bet your booty this girl is
gonna be playing!! We are EXCITED!!
Stay tuned!!!
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April 13, 2011 Wednesday SPEEDY! Erinne must have decided that she didn't have time in her schedule for a long surgery or recovery! Surgery went well from the perspective that there were no complications or surprises. Her spine was quite stiff, but did move one centimeter. The disappointing part is that her pelvic bones are decidedly fused to the hardware in there that we were hoping could be taken out. We were hoping that the chronic pain she has would be relieved if some of that hardware could be replaced with other stuff. But that could not happen. So, now we wait and see. We'll wait to see if She gets any sort of pain relief from what was accomplished today. If not, then.........?? Her pain was managed well after surgery ------ so well that she was trying to talk the doctors into allowing her to go home that afternoon! She did seem to be better that she had been in previous surgeries, but my thought was, what happens when all of the pain meds wore off after we got home and she was in more pain than we could handle? So I opted to take the easy way/coward's way/conservative way out and make her stay for an overnight. So she was sent to the ICU for close monitoring...and proceeded to eat lunch...then dinner...played Uno sitting straight up in bed...watched a movie...all the while reminding me she was perfectly able to do all of that at home. So she is sound asleep in her bed and I am wide awake at 2am in an uncomfortable chair in her room, dog tired but in too much pain of my own to sleep, and second guessing myself. Oh well. We'll leave sometime tomorrow. If she continues to do well, maybe we will stop by school on Friday to pick up her homework and say hello to her friends and teachers and wish them a warm spring break! I think she would like that a lot. Thank you for your prayers and concern. I felt it all the way over here!
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Saturday, March 19, 201
Back in the Surgery Cycle....
Wow -- I am so far behind! But lots to tell
about, so........
Today is an exciting day for
Erinne. We are going to the MSU (Michigan
State University for you out-of-state-ers)
Veterinary School for their annual open
house for students interested in veterinary
careers. Animals are Erinne's passion (and
hopes to make it her career) and she is so
looking forward to the tour, talking with the
vet students and instructors. It will be a
long day, but hopefully a fun and rewarding
one! I have been feeling a bit under the
weather so I hope I can last as long as she
does!
Erinne finally has her next surgery
scheduled on her spine -- April 12th. This
will be a much bigger surgery than she has
had since the very first one back in 2006.
(To date she has had 15 surgeries.) The
lower hardware completely needs to come out
and be replaced with a different type. We
are hoping this will go a long way to
relieving her chronic pain. This surgery is
with a new surgeon, Dr Kelly Vanderhave, at
U of M-Mott's. Erinne's surgeon of 10+ years
is on an extended missions trip to Ghana,
Africa, which necessitated us to move on to
another surgeon. That was not without its
own tears and anxiety as she was/is very
attached to Dr. Mendelow. But, she met Dr.
Vanderhave and really likes her. Dr V talked
to Erinne all through the appointment, which
made a big difference to Erinne. I am
confident in the other key players in the
process, like the anaesthesiologists, whom
we have already met, when Erinne had her jaw
surgery The whole pre and post op staff were
great and I look forward to having it
continue. The ICU folks are now the unknown
factor. But one step at a time. It will be a
longer recovery for her than she is used to
and I hope depression doesn't rear its ugly
head and complicate things.
Erinne has gone through so many surgeries
that people sometimes take it (and her) for
granted. ("Oh, Erinne's having another
surgery. No big deal." Consequently, she
frequently receives almost no visitors
(except for BFF Olivia), no cards, and even
something silly like a balloon. With the
exception of my brother and his family (who
live in KY), my family is not involved and
no where to be found. For her, because of
her history, each surgery is a huge risk.
That is the part that she finds depressing.
Like no one cares. We can't make the mistake
of assuming that all will go well. Her state
of mind is just as crucial as the state of
her body. So I am hoping that you might find
the time to drop her a card, balloon or a
visit when the time is here. I'll post the
information as the time draws closer. For
the time being, lots and lots of prayers
would be appreciated!
"Jesus
said, '"I tell you the truth, when you
refused to help the least of these, my
brothers and sisters, you were refusing to
help Me." Matthew
25:45"
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February 16, 2011 Wednesday
Lacking in Updates.....Sorry!
Suck a yucky time of year, but so much to
update on....Jan 26th we (Erinne and me,
plus Erinne's BFF Olivia and her Mom, my BFF
Cynthia), made a road trip to Ohio State
University to see a heart specialist there,
as well as one of the "big" SMA doctors and
some of the researchers working on gene
therapy and the cure for SMA. I have loooong
suspected Erinne has had a heart problem,
but I could never get the University of
Michigan cardiac doctors to give us the time
of day. "Yeah, she's fine. See you in 2
years." I learned long ago to never ignore
that Momma gut instinct. I was, and am,
totally dissatisfied with that answer. I
learned through my SMA network that the
Columbus Children's Hospital was doing some
cutting edge stuff and were evaluating,
testing and treating SMA kids for heart
issues, and were coming up with quite a few
kids who needed help. (And I have had more
than one friend lose their SMA child to a
previously missed or undiagnosed heart
issue, which drives me to look beyond the
superficial answers.) The doctors at OSU
were OUTSTANDING. Of course there was a bit
of good natured ribbing going on, since we
are all U of M people.To no surprise of
anyone, BOTH girls were found to have
underlying heart issues. Olivia's resting
heart rate was tachycardiac, meaning her
heart was beating too fast (and it always
has -- this was nothing new). She was put on
a beta blocker medication and is doing MUCH
better. Erinne's wasn't quite so simple.
Erinne's heart rate has a high variability.
Her range could be from 42 beats per minute
(bpm) to 140. She also was missing or
skipping heart beats, or she would have a
double heart beat (also known as PVCs) on a
very frequent basis. She is on a special
cardiac monitor for a month to get a big
picture of what that heart is doing, so we
can then determine the best course of
treatment. I spend a lot of time at night
staring at my bedside monitor,
listening/watching for those PVCs. It is
mighty scary, let me tell you. I am losing a
lot of sleep over this. I just want it
fixed! We'll have to return to Ohio for
follow up care this summer. We also need to
make a visit to Madison, Wisconsin, to see
the SMA pulmonary specialist again. We are
still waiting for a surgical date with her
orthopedic surgeon to find complete what
should be the last surgery on her spine. We
are also working with
the maxilla-facial surgeons and her
orthodontists to correct her jaw and
mid-face hypoplasia issue. The elastics did
not work at pulling her upper jaw forward so
now we are left with a seriously major
surgical procedure. (She will need blood
transfusions -- type A+, so I will be
looking for direct donors when the time
comes.)
Gotta
get some of these other issues addressed
first. I won't pretend that I am not scared.
It is just so much to take care of and
follow up on by myself, And when we're
trying to act all normal and "life goes on,"
we need to prepare for high school, if you
can believe that! Our high school consists
of a campus of 3 high schools and 6,200
students. Yep -- you heard that right! So
right now we are working out the logistics,
besides classes, things like a fire escape
route from a 3 story building and a 400+lb
chair that cannot be carried down those
flights, where will bathrooming be done with
privacy, extra time to get between the
classes, etc. -- all normal stuff (which is
nice) but all overwhelming, just the same.
Oh and then there is the new wheelchair that
needs to be ordered because Miss E has
already outgrown this one. The many hands
the paperwork must pass through and the "In"
boxes it gets stuck in necessitates me
calling every week to keep the ball rolling.
I hope to have the new chair for the start
of high school.
Erinne is still playing hockey on the
weekends and has blossomed into a very tough
defensive player.
My painful back adds one more iron to the
fire. I have tried everything non surgical
that they have asked me to do, to no avail.
We meet next week to discuss surgery
options. I have no earthly idea how I will
manage Erinne and follow doctor's orders for
recuperation. So many challenges.
I have to constantly remind myself that God is with me every step of the way and it is truly one day/one hour at a time.
Please keep us in your prayers -- thanks!
xoxoxox
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January 3, 2011
NOT
How I Wanted To Start Off The New Year!!
Poor
Erinne has food poisoning! We went out to dinner on
New Year's Day and she ordered her favorite --
lobster tail. I think it was bad. She has been in
great pain/agony ever since. She can't really throw
up (and get rid of it -- what she needs to do --
because of a procedure that was done a long time ago
to tighten the valve at the top of her stomach to
help prevent reflux (nissen fundoplication) so the
toxins are just sitting inside of her.If I can't get
her better tomorrow then we will head in to the
doctor's or the hospital. So she is officially
missing the first day of school 2011. Bummer. She is
already worried about getting behind.
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