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Sunday, January 25, 2009

 
Calling All Red Wings Fans!
 
As you all know, we decorate Erinne's wheelchair each month, based on a specific holiday or theme. Next month, our theme is "I LOVE the Red Wings!!" -- which of course ties in Valentine's Day and Erinne's devotion to her Red Wings. And since we hope to catch some air time from Fox Sports Network and Mickey York when he comes to her game on Feb 7th, we want to make sure her wheelchair is absolutely over the top when it is seen on national TV on Feb 14th, "Hockey Day in Michigan!", as part of Red Wings Weekly.  So if you have some red and white Red Wings memorabilia that you would like to loan Erinne for her chair, please drop us a line [ Erinnesmom@gmail.com ] and let us know! We'll be making the changeover next weekend.
 
Thanks so much!!
 

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Monday, January 19, 2009

 
FSN Fox Sports Net Is Coming To Erinne's Next Game!
 
Mark Your Calendars!! We hope can stop by!! FSN Fox Sport's Mickey York, host of RED WINGS WEEKLY, will be at our Feb 7th 1:00pm game to shoot footage during the game and do player interviews. The taping will air on Feb 14th during the Hockey Day in Michigan Edition of Red Wings Weekly. Help us to have a GREAT turnout that day -- stop by the game and show your support!! (Erinne would love to have you there!) Directions on the first page of this website.
 

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Friday, January 16, 2009


Breathing A Little Easier
 
The ventilator changes have made a WORLD of difference in Erinne. She is breathing easier while sleeping, and resting better. Last night I even saw a heart rate of 56 beats/minute! It is been MONTHS since her heart has rested like that. Her "old" rate just last week was almost twice that. I am hopeful that by the time she returns to school on Tuesday (they are off Monday), she will be in better shape and be able to stay awake all day. After 3 nights of staying awake, worrying and watching her monitor, I was finally able to sleep. But I still feel like I could sleep another 24 hours straight.
 
Erinne did not go to school on Thursday or Friday. Thursday it was too cold for her to be outside and Friday the school district finally agreed that it was too cold for all of the kids to wait at bus stops or walk and canceled school for the whole district -- along with almost 500 others schools/districts, according to the news. It is absolutely frigid! Tomorrow we are supposed to get 3-5" of more snow.
 
I had my ankle checked by my surgeon today and we are not happy with the swelling. I am 3 months post op. He injected the ankle with cortisone and I have to return in 6 weeks. It hurts -- that's all I can say. Erinne says I walk like a penguin -- with one foot turned to the side. Smart alec!
 
Stay warm! Go Red Wings!!!!
 

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Wednesday, January 14, 2009

 
In a Holding Pattern...
 
That title made me think of my wonderful brother, who is a pilot for United Airlines & lives in KY but flies out of Chicago. I talk to him every day, and on days the Red Wings play, 2-4 times/day. This afternoon he was flying out to Hong Kong and I knew I would not speak to him again until Saturday. He called me right before he left. So when he called again this evening, my heart dropped to my feet. (He does not call me from overseas -- too $$$!) I asked him where he was and he told me back in Chicago. When I asked him what happened, he said, "Well, we had a little problem [me: understatement of the year]. One of the doors blew off at 13,000 feet. We had to dump 200,000 lbs (gal? I can't remember) of fuel and come back to Chicago. The plane is out of service and I'm done flying for tonight." OMG!! He said it wasn't in the passenger cabins or baggage holds -- it was one of the equipment doors on the bottom side of the plane. He said The plane was met by full emergency equipment -- fire trucks, ambulances and whatever else constitutes an emergency flight landing. (They did not know what door flew off until they landed.) Geez!! Too much excitement for me!
 
ANYWAY....Erinne saw her cardiologist today and had an EKG and Echo Cardiogram done. Her doc said that her heart is essentially normal and he felt it was not the source of her current problems. He believes her problems are pulmonary (lungs) and turfed Erinne to the sleep neurologist on Monday, followed by the pulmonary docs on Feb 4th. I am glad it isn't her heart, but I wish we had some answers.
 
I spoke with her respiratory therapist this evening and we are trying a different mode on her vent to see if that will bring her oxygen levels up and thereby possibly bringing her heart rate down. But this change has to be carefully monitored on her pulse oximeter. So as I am getting her ready for bed and hooking her up to all of her machines, I discover that her pulse oximeter is NOT picking up her pulse. I know she has a pulse because she is trying every trick in the book to stall bedtime! I tried it on me and yep -- I have a pulse too so it must be an equipment breakdown! This is a machine that I have just one of -- no back up. The insurance won't pay for a back up. I need to just suck it up and buy another one.
 
So that was our exciting day. Now to see if we have school tomorrow. It is sooooo cold here!
 

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Tuesday, January 13, 2009

 
Just A Quick Update
 
Erinne is seeing the cardiologist tomorrow. My gut is telling me SOMETHING is WRONG. I can't stay up all night watching that pulse oximeter monitor and not be able to FIX IT. She is having some tests done and then we will meet with her doc to see if we can determine what's going on.
 
This morning we had about 3 inches of snow....(already had 7" on the ground) and the complex hadn't gotten around to clearing it yet. Erinne has to drive her wheelchair out of our attached garage to the end of our street to catch the bus. (They can't come down the street because it is a dead end and they are not permitted to back up. Well, the street/drive has a bit of a dip in it and -- you guessed it --- she went down the dip and couldn't get up the dip! It is about half way between our house and the bus. Well, I couldn't go to her and push her out. I was wearing slippers, and besides, my crutches and I DON'T DO ICE -- PERIOD! So my stuck (125lb) child sits in her (400lb) wheelchair the middle of the (dead end) street. The aide on the bus started walking towards Erinne, but she was not of a size that she was going to be able to do much. Fortunately, there was a gentleman who was clearing off his pick up truck and he helped Erinne get through the snow. I can only imagine what the rest of this frigid week will bring! Maybe it'll be too cold to have school. We can wish..........!!!

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Monday, January 12, 2009

 
Erinne is an Enigma
 
I still cannot figure out why Erinne is still needing to sleep 3-4 hours a day (on the vent). She is sleeping almost the entire day at school. She is in bed by 8pm and asleep by 8:30-8:45pm and wakes up only once or twice a night (big improvement from before she started on her restless leg medicine) to be repositioned.
 
Her heart rate has been higher while she is sleeping, which is not her normal pattern (remember, I have been watching her heart rate and oxygen levels on this monitor for 10+ years so I know what her normal is and what isn't.) Her oxygen levels have been running on the low side (91-93%) again on the vent. And, she doesn't seem to be going through all 5 phases of the sleep cycle like she used to -- which certainly would affect her daytime sleepiness. But I am most worried about her heart, which seems to be working harder and not getting the rest it needs. Most doctors knowledgeable about SMA agree that there is a heart problem with SMA -- they just don't know what the problem is yet. To me, that's like living with a ticking time bomb. We do know of some SMA children who have died from heart issues --- especially one near and dear to my heart -- Morgan Saville. It is hard not to stare at the monitor all night, and not worry. Sometimes I find myself talking to it -- "C'mon, c'mon, slow down...slow down." So far that hasn't worked! Your prayers would be much appreciated --- I am worried.
 
Erinne does see the sleep specialist/neurologist on Monday and I know she needs to be admitted for some overnight testing --- which we'll have to wait our turn for. Sigh!! I just want her little heart to get some rest! She used to have a sleeping heart rate in the low 60s/high 50s and now she is in the 100s/110 range.
 
It's about to get bloody frigid here, and I worry about Erinne being out in the cold driving to and from the bus stop. She doesn't have great circulation to begin with and this subzero weather -- even bundled up -- is dangerous. I hope the school district considers the kids waiting at the bus stops, and for the high school kids (like Kevin) who have to walk across campus for classes when they decide upon keeping the schools open.
 
That's it for tonight ---- I hope to be able to post some GOOD news soon. Like maybe we have a van again????

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January 4, 2009

 
HAPPY NEW YEAR!   Life Returns To Normal......
 
Well tomorrow is back to school for Erinne after being home for 3 weeks. She still isn't back to 100% after her surgery. She isn't able to sit in her chair the whole day. Three hours is about the max. I know we need to reevaluate her seating and make growth adjustments. We have an appointment on the 23rd for that.
 
The WONDERFUL respiratory folks from Indiana, Angela and Dominick, came up on Friday to check her ventilator and program it for nighttime use. We used it right away Friday night without a single problem, or alarms going off. I was very happy with that. I made a few minor adjustments for her on Saturday night. I am hoping that this new breath support will be the boost she needs to get her energy back. She will still be using it at school, taking breaths every 30 minutes, as a boost.
 
Erinne was suprised by visitors today who brought her tickets to the Red Wings vs. Colorado game on February 15th. February's wheelchair decoration theme is "I love the Red Wings" so that'll be cool! I hope she will be able to see Chris Osgood after the game. Latte really likes Ozzie so she will be happy to go too!
 
We're still van-less/vehicle-less (since mid-October) but our van should be back to us soon. Erinne probably won't fit through the door without reclining A LOT since this last surgery.
 
Erinne's baby, Henri, our Yorkie, for whom we found a wonderful home for when we moved here in August, came to see us for a week's visit. It was a wonderful reunion and clearly Henri has not forgotten Erinne. The only one not happy to see Henri was one of our cats, Ernie (who is bigger than Henri). You could just see the irritation on his face, if you can imagine that, on a cat. He wasted no time swatting Henri to express his irritation. On the other hand, the other cat, Oscar, was very happy to see Henri and curled up with him for a nap a couple of times.
 
I would like to take this opportunity to thank all of you for keeping Erinne in your prayers and for the kind words of encouragement this past year. Erinne has been blessed with good health in 2008 and we pray it continues to 2009. We lift up in our prayers two of our SMA friends who have earned their wings this past year and are now in Heaven -- Lily B and Skylar S.

 

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December 26, 2008

Quiet Christmas

Quiet is good.

We have too much excitement in our lives some time --- much of the time! Without a van, we were home the whole day, so no one had to get out of their sweats. With Erinne still recovering from her spinal surgery and Kevin recovering from bronchitis, staying home was indeed a very good thing.

Erinne wanted a teddybear hamster in the worst way. It was basically the only thing on her wish list. Mind you, we already have Latte, her service dog, plus 2 cats, (Ernie & Oscar), a white, blue-eyed dwarf rabbit (Snowball) and Erinne's birthday present last year, a green-cheeked conure, Ozzie (named after Erinne's favorite hockey player, Red Wing Goalie, Chris Osgood.) (Kevin has total responsibility for the cats and the rabbit.)

She doesn't ask for much. But anybody who has had to do it can tell you that it is very difficult to tell Erinne no.

So here I am on the 23rd, spending my birthday slogging through nasty, icy weather, running around to EIGHT pet stores looking for a teddybear hamster. Oh there were plenty of other hamsters available -- golden hamsters, siberian hamsters, fancy hamsters, dwarf hamsters -- but no teddybears. I guess every kid in Canton wanted a teddybear hamster this Christmas. After the 7th pet store, I was getting pretty perturbed. (I was also tired of navigating the icy surfaces on my crutch. I hate ice.) Finally, at the 8th store, I found 2 teddybear hamsters. As I had called for help in getting the hamster, another couple came up and started admiring MY hamster. As they pointed out how cute this one was, I told them that was MY hamster -- I was here first and had already called the clerk to box THAT one up. (Yes, after navigating the ice and 8 stores, I was a tiny bit cranky.) The hamster looks a lot like Latte -- light brown and white, with a white stripe between her eyes and down her nose. (It is a female). She was a little bit jumpy and nervous, but that is to be expected. By the time I got her home, she had already chewed a good sized hole in the flimsy box they put her in. I still had to put her cage together. Fortunately, Erinne was in her room in bed when I got home, so I could spread out the parts and the directions on the living room floor and get the cage together quickly (I found out "quickly" wasn't listed in the directions anywhere.) I finally asked Kevin and his friend to put it together -- I had run out of patience. (The cage is a combination of a cage, shelves and tubes.) We gave it to Erinne that night, as an early Christmas present. She must've thanked me 100 times for that hamster before she went to bed! Her name is "Dodger." And she is amazingly calm and not the least bit nippy with Erinne. I am quite surprised, because young hamsters require a lot of handling to in order to get them calm enough to hold -- especially for someone like Erinne to be able to hold (her hands don't fully close). Most of the time, when Erinne is in bed (which is about 1/2 the day, because she can't sit up in her chair for long periods of time yet), the cage is right next to her in bed. Dodger is a cutie and Latte is a wee bit jealous!

Kevin, in true teenage boy fashion, got a new hockey stick (not wood = not cheap!), a bunch of American Eagle clothes (the only brand he wears -- he could be a walking billboard for AE!), cologne and video games. Erinne also got a couple of video games, movies (she is the DVD diva!) and art supplies. They both got some Red Wing clothes and Red Wing calendars.

Latte, who is very maternal, got a new "baby" (stuffed animal) to add to her brood.

All in all, a great, quiet Christmas!!

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Monday, December 22, 2008  10:15pm

Quick Update

Erinne saw her surgeon today for her post op follow up. He is very happy with the x-rays and her incision site. She doesn't need the super sticky bandages on anymore (which she absolutely HATES!) and can get by with a light dressing, just to protect the stitches from being pulled on by clothing. And I about passed out when he measured her at 5'8" !!!!! At age 11 1/2 for goodness sakes!!! She's passed her older sister Claire up and I'll be next!! The surgeon hopes we can wait another 6 mos before the next surgery but it may be less, if she keeps growing like this!

Her staph skin infection is clearing up nicely, thanks to the diluted bleach solution and antibiotic ointment her pediatrician suggested. (I learned that 99% of all skin staph infections can be successfully this way.)

Kevin saw the pediatrician today for bronchitis. We caught it before it went into pneumonia, like it did last year. He'll have to go through some additional allergy testing soon, because we have seen a pattern for the past 3 years.

Time to put the princess to bed!!! (shh! Don't tell her I called her that -- she hates to be called princess!)

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Sunday, December 21, 2008 5:00pm

PS. To today's update / CT Scan:

 
Erinne's surgeon called last night to check on her. He offered to swing by the house on his way home from the hospital (it is not on his way home!) to check on her if I needed him to --- what a great doc! A surgeon who makes house calls!
 
Anyway, the CT scan showed no old healing fractures in her coccyx area, which is good. He said it appears as if some of the sacral vertebrae in her lower spine are starting to fuse on their own. That is not a bad thing. He told me the current thinking is to not do a final fusion ----- to just leave things the way they are when she stops growing. I am all for avoiding a long last surgery!

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Sunday, December 21, 2008 12:30pm

 
As if life is not exciting enough around here ......
 
It appears as if Erinne has a skin staph infection on the inner side of her butt cheek, close to the start of the pubic area. I thought maybe it was the start of a decubitus, but after discussion with her pediatrician this AM, she thinks it is a hospital-acquired staph infection.
 
And Kevin doesn't want to be left out of the excitement, so he has come down with bronchitis, as he always does this time of year. Usually it goes into pneumonia right away. He is on Xopenex, Pulmicort, Sudafed & Vick's Vaporub for now.
 
NEVER a dull moment around here!!!!

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Friday, December 19, 2008 10:00pm

 
Erinne's Recovery
 
Erinne continues to do very well since coming home. Her pain has been very manageable, only needing pain meds today when I changed her bandage on her back. Her bed makes it sooo much easier/more comfortable for her to recover. She is sleeping much better. I hope tomorrow she'll feel like getting up and moving about a bit more.
 
Thanks for checking in!

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Wednesday, December 17, 2008

 
Home Sweet Home!
 
We made it home about 6:30pm, after waiting 2 hours in the lobby for our transportation company to show up, obviously late. Erinne was in agony sitting in her chair for so long, and we had yet to make the 40 minute ride home. I had to give her Loratab and Valium in the lobby and it only took the edge off of the pain. I wouldn't go back up to the floor because Erinne's nurse got a new patient before we left -- MRSA. I wanted no part of being up there.
 
I changed her bandage tonight because of the amount of drainage on the bandage. Wasn't going to leave it there to fester. It is always a traumatic event because there is so much adhesive to get off (even with using Detachol) and her back is so sensitive. No results on the results of her CT scan from this morning.
 
She had immediate pain relief as soon as she lay down in her bed. That V-Cue mattress and a 3 inch memory foam is our version of The Princess and The Pea!! (I am sure looking forward to sleeping in my bed tonight too!)
 
She has the old hardware out of her back (in an autoclave bag) for her version of Show-n-Tell. Pretty heavy stuff!
 
Now to focus on getting ready for CHRISTMAS!!!!!
 
Thank you for your prayers, concern and well wishes!

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Tuesday, December 16, 2008, 6:36pm

Erinne is Extubated

Erinne extubated (take breathing tube out) at 5:45pm with success!
 
Made believers out of a few more people on the value of the CoughAssist and following the NIV protocol for extubation!
 
At 6:00pm she said she was ready to get off pap and is sitting up, cross-legged in bed, with Latte on the bed with her. At 6:05, she wanted ice chips. At 6:25, she's asking for pizza. I drew the line at pizza.  Gotta draw the line somewhere, or the nurses will think I'm crazy.
 
Going to start feeds up shortly.
 
Whew!
 
Wish we could go home tonight. But it is snowing pretty heavily. Probably just as well to stay put, and get the CT scan done in the AM.

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Tuesday, December 16, 2008, 3:15pm

 
Erinne - Post Op Update
 
THANK YOU everyone for your concern and prayers! Erinne is doing well. Her surgery didn't start until 8:30a --- which was when I was back in the OR with her, holding her hand and rubbing her cheek while they put her to sleep. They waited until she was intubated to put her IV in and draw all the labs, which was great. Erinne was assertive and told the anesthesiologist, "I would really appreciate it if you would wait until I was intubated before you tried to start my IV or draw labs. I am a tough stick and I'd rather not be awake when you try to find a vein. Last time it took them 12 tries before they got it in." The surgeon started around 10a and was finished by 11a. He replaced some of the connective hardware which were showing signs of wear and tear. She was moved to her ICU room around 1:15pm. After a lot of jostling and moving her around, they gave her some morphine for the pain. She is also on Torodol. She is still intubated, but is on room air. We are waiting for the pharmacy to check the neb meds I brought in before giving her a breathing treatment. Then we'll do a couple of breathing treatments, cough her and then if all goes well, extubate (take the breathing tube out) to bi-pap. She sounds pretty clear, even before coughing her. I expect to do that by about 5 pm at the latest.
 
These folks here are totally supportive of the pulmonary protocol I follow with Erinne. It is nice not to have to do battle over every little thing
 
Erinne's surgeon was not comfortable letting us go home tonight. But he is willing to schedule her for a CT scan to take a look at her coccyx (pain for the past 6 or so months) to see if anything is broken and may require repairs or changes. He swapped out some of the anchors from the rods that were in need because the threads in the nuts/bolts had broken down.
 
All in all, things are going quite well!!
 
Thanks for your prayers and concern.

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Tuesday, December 16, 2008   12:15am

Erinne Presurgical Update

As of about 4:30am Monday morning, I had planned to cancel her surgery because I could hear wheezing and a rattle in her right lung and her heart rate was elevated all night. Her oxygen levels were a bit low as well. I could not get rid of whatever was in her lung. But by 8am, it disappeared.  THANK YOU GOD!!!  She has been fine all day and the noise hadn't returned, so we are a go. Her surgery is scheduled for 7:30am and we have to be at the hospital at 5:30am!!! Aargh!! We are being picked up at 4:30am. (And you are wondering why I am still up?????? Me too!)

I'll update after surgery. If you just can't stand the suspense or the waiting, give me a call. Latte and I will be sitting in the surgical waiting room, staring at each other.

Erinne was quite apprehensive when she went to bed tonight, worried about the surgery. ("I just don't have a good feeling about this surgery.") If she doesn't have a good feeling, that concerns me. She knows her body, and I hope her fears are unfounded.

Please keep her, and her surgeon, Dr. Mendelow, in your prayers. Thanks!

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Thursday, December 11, 2008

Big Hockey Weekend!!!

Erinne has a big weekend coming up and she is very excited!! On Friday, we are going to see "The Glory of CHRISTmas" at our church --- NorthRidge in Plymouth. It is a beautiful Christmas program/production. Definitely puts the focus where it should be --- on the birth of Jesus. Erinne will not be going in her power chair, since we cannot transport it without the wheelchair van. So we'll make due, hitch a ride with friends and drive veeerrrrrry carefully!

Her BIG DAY is on Saturday. At 3:30pm, she has her hockey game, which she just lives for! Then after the game, she'll forgo her Christmas party with the team and head over to the Canton hockey rink (where Kevin plays) to drop the ceremonial puck for the fundraiser/charity game between the Canton Firefighters and the Canton Hockey Coaches. She was SO excited to get the call to ask if she would be willing to do it. She has never had an opportunity like this and is so tickled to be included! She is looking forward to meeting the firefighters too. Not sure how we'll get to the games with her wheelchair yet......still working on transportation!

Monday will be her last day of school before the Christmas break. On Tuesday, 12/16, she will be having her 5th scoliosis/spine surgery (I thought it was her 4th, but I had to stop and count -- and realize it is actually #5!! ) We *should* be back home on Wednesday, if all goes well. Still working on how to get out to to Providence Hospital in Southfield. When we went down to Children's Hospital last week and then to Providence Park - Novi for her presurgical appointment via Huron Valley nonemergency transport, it cost me $244!!!  I don't think we'll be doing that again anytime soon!!!

We are hoping to have our van back -- running! -- after Christmas.

My recovery from my 4th surgery to try and repair my fractured leg/ankle (can you believe it has been 2 years since I fell on the ice and broke it?) is not going as well as we hoped, 8 weeks post op. I am starting to wonder if it is ever going to go back to normal again ... whatever normal is. I've already worn out 2 pairs of crutches! I would sure like to think about finding a job again ..... if I can walk and stand on my feet all day.

I sure wish I knew what God's Plan for us is .... and I am trying to be patient.

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Saturday, December 6, 2008

Fox Sports News Clip with Erinne

Here is the clip from Fox Sports of Erinne's visit with the Red Wings. She posed with the Cech players (Hossa, Hudler & Kopecky). It wasn't planned that way! The clip didn't air today on Fox Sports, as expected. I'll post the new information if/when I find out when it'll air. In the group shot towards the end, she is on the far right.

http://blog.mlive.com/snapshots/2008/12/redwingstv_posts_videos_of_chl.html

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Thursday, December 4, 2008

We LOVE our RED WINGS!!!!

WOW!! What a great day yesterday for ERINNE!!! The Red Wings were making their annual visit to Children's Hospital downtown and Erinne was able to visit with each of them! Latte of course got plenty of attention from the Wings as well. So many GREAT memories for Erinne. She was able to give Chris Osgood (Ozzie) the birthday card that she made for him and some Nerds -- his favorite candy. She also gave each Red Wing one of her wristbands. I have a ton of pictures and I will get them posted tomorrow! THANK YOU, RED WINGS for putting a smile on Erinne's face!

** Fox Sports will be showing a tape of the Wings' visit with the kids on SATURDAY, 12-6-08, at 11am and 6pm. My TV listing says "Detroit Tigers Weekly" but it really is about the Wings. Be sure to tune in and see if you can spot Erinne in her jazzed up Christmas chair, and Latte wearing reindeer ears and a big red bow. ** 

We also saw Erinne's orthopedic surgeon yesterday afternoon who was surprised at how much she has grown since he last saw her in July.  *I* know she's grown! He asked how her diet was, because she seemed to him to have lost weight. I assured him that she definitely has not lost weight, but has stretched out. (My other 2 kids also put on their weight at the same age and then stretched out.) She is scheduled for her 4th spine surgery (rod lengthening) on DECEMBER 16, 2008, Tuesday. I wanted to wait until the week after Christmas, but the surgeon will not be in town. She'll miss the last week of school before the Christmas Break. The x-rays showed that there is still enough overlap of the 4 rods so that they do not have to be replaced with longer rods yet. Her surgeon expects her to go into a big growth spurt about now and said we may find that Erinne will need the next surgery sooner than the 6 month time frame.

We're still vehicle-less but our van is being worked on. I saw my surgeon this week and he is still not happy with how swollen and red my ankle is 7 weeks post op and ordered a second round of antibiotics. Life is status quo for Kevin -- school & hockey. He had a school field trip to Chicago yesterday with his advanced audio-visual class to visit the NBC studios.

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Thursday, November 27, 2008 - Thanksgiving

Thank You, Lord......

  • For Erinne's LIFE....and for the zest and joy that she wakes up with everyday.
  • For giving me 11 1/2 years with Erinne, and for the privilege of choosing me to be her Mom.
  • For Erinne's good health....despite the fact that she has had to face so many obstacles and setbacks.
  • For Kevin, who helps me care for Erinne, day in and day out. I thank God he is as big and strong as he is, because he is the only one who can carry her.
  • For Kevin's ability to play hockey, thanks to his Uncle Gregg and Aunt Jodi -- because I certainly could not afford it.
  • For Erinne's doctors -- Dr. Mirta Soler,  Dr. Michael Mendelow & Dr. Edward Dabrowski -- who are available to us 24/7, and who really listen to my concerns, and treat me as an equal on  all matters pertaining to Erinne's medical care.
  • For Erinne's nurses -- Melanie, Lisa, Diana & Beulah -- who take such good care of Erinne at home and at school.
  • For my brother, Gregg, who continues to be my ROCK and my prayer warrior. I don't know how I could get through each day without his unwavering support.
  • For my friends -- Susan and Carolyn -- who have been there to help me through the tough times.
  • For my friend Kristy, who pushed and pushed and helped me to FINALLY find an in-road through government red tape and get Erinne signed up for the state's children's waiver program, which is going to make our lives a WHOLE lot easier.
  • And to my caseworker, Maureen, who helped us navigate all that red tape and get the state to accept Erinne into the waiver program.
  • For Bob & Nancy for allowing us to borrow their wheelchair van when Erinne needed to get somewhere.
  • For Kristy's brother, Russell, who is an absolute saint and is going to attempt to replace the engine on my decrepit van, even though he has a torn rotator cuff in his shoulder. All he asked for is a case of beer for him an his buddies who are going to help him.
  • For Anton, who ran his first ever marathon (26.2 miles) with only a couple of months preparation, in honor of Erinne. He had not yet met Erinne until the night before the race. Anton raised money for Erinne's van fund.
  • For Angela and Dominick, who were concerned enough about Erinne's pulmonary function (and deterioration), that they drove a ventilator 3 hours one way (from Indiana) 3 days after I called them, asking for help.
  • For Dr. Bach in NJ, who was willing to put Erinne's needs above politics and egos and wrote a script and letter of medical necessity for that vent, and sent it to me just 3 hours later. He is a life saver!
  • For the faculty and staff at East Middle School, who have made Erinne and Latte feel so welcome in her new environment.
  • And finally, for my oldest, Claire..................someday.

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Sunday, November 16, 2008

A 180* Turnaround!!

What a difference a day makes! What a difference a VENT makes!!! Erinne was a totally different child today! She used her bi-pap as usual last night, but during the day today she used her new vent, sipping from the ventilator "straw" whenever she felt like she needed breathing support. She did not fatigue once today, and no naps! (That's a first in months!) She said she can feel the difference and is looking forward to having it to use at school. I am so very, very thankful for Dr. John Bach's (in New Jersey) willingness to put Erinne's needs first (above politics and egos) and extremely thankful for RT Angela King's and her husband Dominick's willingness to drop what they were doing and drive 3 hours one way from Indiana to bring Erinne a ventilator and get her set up. They will be back for several more visits while we fine tune the vent for daytime and nighttime use. They know and understand Spinal Muscular Atrophy and I trusted that they knew exactly what Erinne needed.  I am looking forward to learning more about the vent so I can help other families down the road when they find themselves in this position. I predict that this ventilator will become the standard of care for Spinal Muscular Atrophy within the next 5 years. It is just too bad that I had to resort for help from out of state to get Erinne's critical needs met. It definitely has been a learning experience. God Bless you Dr. Bach, Angela and Dominick!!!!

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Friday, November 14, 2008

Changes......of Concern

I am seeing changes in Erinne's pulmonary status that are very concerning to me. It appears that she is no longer being adequately ventilated on her bi-pap anymore and is suffering from ventilation fatigue (from working too hard to breathe) and severe headaches when she wakes up (from retaining Co2 -- not blowing off the Co2 adequately). I've not gotten any support (only opposition) from Erinne's doctors who are supposed to specialize in this type of care so I have had to resort to contacting a specialist in Wisconsin and another in New Jersey for assistance, which they readily gave. Thank God for Erinne's pediatrician, Dr. Mirta Soler, whom I have always been able to count on for help and support. To make a very long story short, Erinne will be transitioning to a ventilator this weekend, to better support her changing pulmonary needs. There are 2 very kind, wonderful respiratory therapists who will be driving up from Indiana this weekend to help us make the transition. They have been trained in this very specialized protocol and have a great deal of experience with SMA children. There is no one in Michigan who has this expertise. I am so grateful for their support and understanding the urgency of the situation, and their willingness to drop what they are doing to help Erinne. Still no van news. I am trying to borrow a manual wheelchair so that I can take Erinne to the doctors for some lab tests to see if anything else is going on. The insurance does not see the need at this time to loan us one ... despite the fact that Erinne cannot be transported in a car anywhere unless we have a WC to put her in. It is not like she can be picked up and carried like a small child! ~~~~~~ And oh yeah --- my leg is still hurting quite a bit. I think I need to play the lottery tonight -- my luck has got to change SOON!!! As always, prayers are appreciated!

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Monday, November 10, 2008

WE NEED A VAN!!!!

Transportation is getting challenging and right now, the only place Erinne can go is to school (because the bus picks her up). Dr. appts, appts for braces .... they are all on hold.

I haven't been able to find a buyer for our broken down van (like a mechanic who will take it off my hands and can install a new engine in it for some needy family!) and I still owe $1,000 to the dealer for work they did on it (new radiator, hoses, possibly a head gasket -- not sure) before they determined what was wrong. I hate to spend $1,000 on something that won't even run -- and that has to be towed to another place after I spend that $1,000! Geez! Sounds like such a waste of money to me. Christmas money.

I called Erinne's medical insurance today to see if they would give us a loaner manual (folding) wheelchair so that I could attempt to transport Erinne to dr appts. They actually told me no!?! I could not believe it!

I've also been going back and forth with the State about getting more nursing hours so I could rest my leg (still 5 more weeks on crutches......ugh!) I did finally get another 180 hours approved, so that should help. I also need to use a little bit of that time to spend with Kevin. I have yet to make a hockey game of his this season and I know he really appreciates having me in the stands, watching him. He has been so helpful with Erinne, as he is the only one who can lift her right now (the nurses that come to the house cannot pick her up -- Erinne is 120lbs and 5'6"!)

Erinne will be having her next surgery on her spine in December, probably over the Christmas break. I gotta be able to get her to the hospital then!!! 

I am trying to be very patient and not panic about the van/transportation issue. But it sure is scary not having ANYTHING. I wish I knew what God's Plan is. He sure is testing my faith and trust in Him.

Please keep us in your prayers ... thanks! I need some wisdom and guidance here.....
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Friday, October 31, 2008 - Happy Halloween!

Rock Bottom.....?  UGH!!

Well, the inevitable has finally happened. The van broke, and is no longer repairable. First the radiator, water pump and hoses were replaced. (There was a hole in the radiator.) But the engine still leaked. Long story short, one of the pistons melted. The engine is shot. The mechanic said a used engine would run about $2,000 and the total bill $4,000. He advised against it. He said the van wasn't worth that kind of investment.

SIGH.

So now what?

I haven't a clue.

This wasn't on "my calendar" this year.

I am juggling so many balls in the air right now.....trying to recover from my surgery and stay off my foot....dealing with the loss of my medical and dental insurance (COBRA coverage has ended. Gee, do I pay $1,000 for a crown or put it towards a car?)...trying to get the people at Erinne's special needs insurance to stop lying to me about nursing coverage and just do what they are supposed to do (I have never seen such incompetence) ... getting nurses in here to help me with Erinne and stay off my foot (and we had a GREAT, GREAT nurse here for a short time) ... trying to help Kevin deal with his own challenges .... get help for Erinne, who is having her own troubles dealing with all the current stressors and losses of important people in her life.....I just can't keep listing the difficulties. It is too depressing.

And now..... no vehicle. No way to transport Erinne.

I am trying to not be overwhelmed by this "Big (disastrous) Picture" and take a step back and ask God to show me what He wants me to do now.  I am praying about it and trying to focus on just one thing at a time. 

I'd appreciate it if you'd pray for us too.

I'm just not sure where to go from here.

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Sunday, October 26, 2008

HOCKEY SCHEDULE

Erinne plays hockey on the following days. All games are played at Ward Presbyterian Church, 6 Mile and Haggerty, behind the bookstore.

Saturday, November 1st, 1:00pm-2:30pm
Saturday, November 15th, 1:00pm-2:30pm
Saturday, December 13th, 3:30-5:00pm

This is it for 2008. The 2009 schedule will be posted when it is available. Hope to see you at a game!

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Saturday, October 25, 2008

More Van Bad News....

Well, it had happened again. The van broke down on the freeway as my friend Liz was taking Erinne to a Halloween outing at her church. She said the engine was smoking/steaming. (I've had a slow leak in the radiator and I checked the fluid level and added water before they left.) I can't wait to see how much this repair costs. Erinne was soooo looking forward to this outing with Liz too.

Also these past 2 weeks found me at the dentist for a root canal but of course it wasn't that simple. The dentist took x-rays and found a 'mass' on my jaw bone and refused to do anything until I saw an oral surgeon. So I went to the oral surgeon and she said I had an infection in the tooth/jaw bone and put me on an antibiotic. Then after I finished the antibiotics (and after my ankle surgery) I went back in for the root canal. The dentist started drilling. Then she stopped and said the root canal was calcified and I would need to see an endodonist. So the next day (which was yesterday) I went to the endodontist who also took x-rays and told me the infection was still there and he couldn't fix the tooth until I started on a stronger antibiotic. So now I am supposed to go back on Monday for the 3rd try at the root canal. Now anyone who knows me knows I have a phobia about going to the dentist. I would rather give birth again than go to the dentist. And here I am, having to mentally prepare for 3 root canals that weren't to be. Aargh!

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Thursday, October 23, 2008

On The Road To Recovery

I am not a very good patient or very patient! My ankle and my knee are recovering .... slowly. I saw my surgeon on Tuesday and he was happy with the surgery and how my incisions (knee & ankle) are healing. I think they look pretty ugly myself. I am not allowed to stand on it for another 7 weeks. I do not make a very good flamingo .... standing on 1 leg all the time. The surgeon also said he "cleaned up" my knee (arthritis) while he was in there. I told him thanks ... and I wish he would have cleaned up the other one too .... it's "grating and grinding" like crazy! 

It has been REALLY hard not being able to take care of Erinne or my usual household duties. The most I can be off the couch/bed is an hour at a time and then I have to stop and elevate/ice it. I'm looking at the dust bunnies and thinking, "...is there a way I can get to them with my crutch?....."

But enough about me. You stopped by here to check on Erinne, I'm sure. Last weekend, we had a new friend --- her new school's assistant principal's husband, Anton Botosan --- run his first ever marathon (26.2 miles) in her honor. He and many of the runners wore the Erinne Wristbands in her honor. He is helping us raise money for the new van. I am so touched that he he cared enough to put his body through that torture for a young lady he had never met until the day before the race. We would have liked to have gone downtown to greet him at the end of the race, but I was not capable of that kind of trip right now.

Erinne continues to adjust to middle school and a growth spurt at the same time. She seems to need a great deal of sleep --- 12+ hours a night (sometimes 14) and ends up taking a nap at school quite frequently. I don't know what else to do about this situation, other than just let her sleep as needed.

Thanks for checking in with us!

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October 15, 2008, Wednesday

Post Op Update

Just wanted to thank you ALL for the prayers and support you have given us over the past couple of days. I am doing better each day. We have a wonderful nurse, Beulah who is here from 3pm - 8am to care for Erinne. Such a blessing and Godsend!! I did have to be a bit of a non-compliant patient (no surprises there, huh?!) and cut my cast off on Tuesday. It was WAAAAY too tight and my toes were turning bluish-purple. As soon as the case was taken off, I had immediate pain relief. It felt so good sleeping without that cumbersome thing!! Erinne's nurse and my friend Susan (who is also a nurse) helped put the cast back on today, although not as tight.

My pain is manageable if I stay in bed and keep my leg iced and elevated -- so I am trying to do just that. Sure is easier to follow doctor's orders when you have help in the home!! Thanks for checking in!! 

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Monday, October 6, 2008

Mom & Erinne Update 
 
Erinne is still fighting the tail end of her virus. Staying for a full day at school remains a challenge. She is sleeping A LOT -- 18 hours is not unusual for her. Sure would like to get back to normal -- whatever normal is!

And a little bit on me ---- you may remember that I broke my leg, slipping on some ice back in Jan 07. Well, 3 surgeries later, it still has not healed properly. No doubt in part due to the fact that I have not been able to stay off of it during the recovery period, because Erinne still needs care 24/7. Well, my "last chance surgery" is scheduled for Monday, October 13th. The plan is to take a couple of 'plugs' of bone and cartilage from my knee and transplant it to my ankle. (It's called an OATS procedure.) BUT -- the BIG thing is I HAVE to stay off of it completely for at least 8 weeks. It will be a long rehab to get back to "normal" -- whatever that is. My COBRA insurance from my former employer will run out at the end of this month and then I will be joining the ranks of the uninsured Americans. Such a comforting thought.
 
Erinne's wonderful pediatrician and her staff have been tirelessly working to persuade the insurance to provide nursing care for Erinne at home, from
3pm - 8am -- the hours she is at home during the week, and 24/7 on the weekends. (Right now BC/BS is being very resistant.) So far we have been able to secure 180 hours from the state. (That is all they can give us for the entire year.) And yes, looking at a 17 hour day, those hours will be gone within 2 weeks. But even with 180 hours approved, we have not been able to find an agency that has a nurse available. Because of Erinne's high needs, it has to be an RN. It does not have to be someone coming from an agency. The state has a streamlined application plan for an RN to sign up to work independently. So if you know of anyone that might be interested, please give them my email. It may take me a while to get back to them because I don't have a computer at home any longer. We do have a lift to move Erinne from room to room, but there will still be a fair amount of lifting involved -- and she is no dainty flower!
 
My good friend Carolyn will be taking me to the hospital and will be the "point person", should you wish to get an update after surgery. Her email is  wilsonc4@wowway.com. I am NOT planning on an overnight stay (and yes, I know I can be pretty stubborn about that!)
 
This is going to be a big challenge for me to stay off of it for 8 weeks. You know I have always put Erinne's needs first and I probably won't be able to consistently do that during my recovery. I am used to being independent and self-sufficient, and will have to learn to let go and allow people to help. That's a tall order for me!

So I'd appreciate a prayer or two on Monday, for the surgeon's wisdom, patience for me and peace for Erinne and Kevin -- it'll be tough on them having Mom down.
 
Thanks for your prayers.

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Friday, September 26, 2008

News A Little Sparse! 

Not much news to report ..... mostly the "same ole - same ole." But that's good -- no news is good news! Erinne is STILL fighting off that virus! Today is day #15 for her. But today was the first day we did not have anything to "clean out" of her lungs and sinuses this morning - yay!! This bug has really taken a toll on her energy levels and school attendance. She is sleeping about 18 hours a day ... usually a 4-6 hour nap followed by 12 -14 hours at night, and attending school just 1/2 days. But fighting it off on her own is the goal, and it will build up her immunities. I also caught it, and am on day #12. But I am feeling a lot better. Kevin is trying to fight it off, and is also very tired. Both kids come home from school and take naps at 3:30p. Who would have guessed that, from a 17 yr old and an 11 yr old?!

Erinne has soccer AND hockey this Saturday. That is her idea of a perfect day! Soccer at 10:00a-12:00p and hockey at 2:30-4:00. She'll probably crash big time after that. Next weekend my brother and sister-in-law (along with my niece and nephew) will be in town for a Halloween camping weekend. We are soooo looking forward to their visit! My dad is supposed to come in from Ludington too. That will be nice -- we haven't seen him in 2 years. My niece and nephew are so wonderful with Erinne. 

Erinne's hockey games are all at Ward Presbyterian Church, 6 Mile and Haggerty, behind the book store. Just look for all the wheelchair vans!  Her schedule so far:

Saturday, 9/27, 2:30-4:00
(The October game she'll miss, because of my brother's visit)
Saturday, 11/1, 1:00-2:30
Saturday, 11/15, 1:00-2:30
Saturday, 12/13, 2:30-4:00

Hope to see you at a game!
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Monday, September 15, 2008

First Illness Of The Season

Fall is officially here and Erinne has caught her first bug of the season. We're on day #4 of this virus. Her lungs are still clear and I sure am hoping to keep it that way! This bug seems to mainly be in her throat and sinuses (and boy, are those sinuses packed!) We've not been to the doctors yet because I believe this is a virus and of course antibiotics won't help. So I am treating the symptoms, keeping her comfortable and waiting for this to run its course.

Her first hockey game is THIS Saturday, Sept 20th, at 1:00-2:30pm. She is now on the Wolf Pack team. She is very excited to have her hockey resume!!!!! I will post the rest of her schedule soon. She plays at Ward Church, 6 mile and Haggerty if you'd like to come and watch! Kevin has started his hockey as well, so we are now running in many directions!! We can't wait for the Red Wings to start up as well --- then fall is REALLY here!!

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Sunday, September 14, 2008

The Holy Grail of Hockey: THE STANLEY CUP!!

On Sunday, we were fortunate to have a visit with THE STANLEY CUP!! We were invited to the team's trainer, Piet Van Zant's house for his Stanley Cup party. We were invited by a little cutie, Chelsea, that we met up in the hospital during Erinne's last surgery. The girls have the same wonderful surgeon, Dr. Michael Mendelow.  Both Erinne and Kevin were in absolute awe of the Cup. They touched it as if they were touching a piece of very fragile crystal. (Of course I had to touch it too!) We have some wonderful pictures with it and I wish I could share them with you right now. I hope to post them soon!

School is going good for Erinne, although she is having a hard time adjusting to the long days and is coming home before the school day is over and taking long naps.  On Sunday (after the Stanley Cup visit) she came home and went to bed at 5pm ---- slept straight through (except when I would wake her up to make sure she was okay) until 6:30am when I woke her for school. She still was exhausted and said she couldn't go to school -- and slept another 5 hours!! We had a similar thing happen yesterday. I am hoping tomorrow to get her to school and make a full day! I do think puberty plays a BIG part of this.

Erinne has been a bit more emotional lately and feels like she is depressed. I have tried to explain to her that she has been through a lot of things lately that would depress most people -- moving, changing schools, leaving old friends, making new ones, puberty, etc. And Erinne being the wise child that she is, has decided that she needs to discuss this with her doctor the next time she sees her. But she also decided that I need to give the doctor a heads up and let her know what Erinne wants to talk to her about. So if you could, please say an extra prayer for her that she can get through this difficult time in her life.

Somehow, I think this is just the beginning....

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Saturday, August 30, 2008

We've Moved!!!!!

It has been a very busy couple of weeks. The biggest news is that we have moved!!! For the first time ever, we are finally in a place that has no stairs and that Erinne can drive through our entire home! It is a 3BR apt w/attached garage, built in 2000, so all the doorways and halls are plenty wide for her wheelchair. Big smiles all around! If I you need our new address, please email me. Our phone numbers remain the same.

Erinne starts middle school on Tuesday!!!! She is ready for summer to be over and is excited to meet new friends!! Kevin also starts on Tuesday and will be a senior (and he is NOT happy summer is over!) He's one good looking guy! We are all more than ready for hockey season to start and to see our glorious Red Wings again. Kevin and Erinne will both be playing hockey this fall and winter as well. 

I'd like to stray off the topic here and wish my beloved baby brother, Gregg Budenaers, a Very Happy Birthday!! (How old are you again -- 44?) Gregg is my Rock, my Prayer Warrior and one of the reasons I am still sane and put one foot in front of the other every day. He lives in Louisville , KY and we talk on the phone just about every day, except when he is flying out of the country. On Red Wing game days, we may talk 4-5 times that day, including during the game. (And since behind every great man is a great woman, I'd like to thank Gregg's wife, Jodi, for putting up with our endless phone calls, especially on game days. I think Jodi has been forced to become a hockey fan because our fanaticism!) I love you, Baby Brother! Happy Birthday!!! You are THE BEST!!!!!

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Wednesday, August 13, 2008

Good Check Up With The Surgeon

Erinne saw her orthopedic surgeon today for her post op check up from her scoli surgery on 7/22. He is pleased with her incision site. He checked out her neck carefully after the incident on Friday and found no problems. He did order a cervical collar for her to wear when she is "off-roading"!! (He kind of chuckled because he has a couple of SMA patients around Erinne's age who insist on off-roading in their wheelchairs!) The x-rays of her neck & spine look good. We compared the 4 rods (usually used with adults) he put in in 2006 that had about a good 5 inch overlap to the x-ray now, which showed less than a 3/4 inch overlap! He was hoping to not have to replace these rods, but it looks as if that will be the case for one of the next 2 surgeries (January and June 2009). That is a more involved/longer surgery because all 4 of the rods will have to be switched out. He also told us that the family we met during her last hospitalization (he asked us to introduce ourselves to them because he wanted the little girl to have a G-tube placed and the parents were very hesitant about the procedure. He also told the little girl about Latte and promised her that she could visit with Latte. Erinne & Latte always visit the other kids when they are in the hospital) finally decided to get the G-tube placed. He thanked us for talking to them. I told him Erinne was the one that did most of the talking -- and showing her G-tube site. She was so matter of fact with these parents, and so accepting of it that I think they realized it was not a huge ordeal. She is such a wonderful role model !!

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Saturday, 8-9-08

The Day After

Erinne had no lasting effects from the "incident" yesterday, other than I noticed today that she had petechiae (small broken capillaries or tiny hemorrhages) all over her face -- from her forehead to her eyelids, cheeks and chin. THAT scared me more than anything because that meant she was significantly being strangled by her harness. Those angels around her are what saved her -- no doubt about it. We've had to rethink how Erinne goes out and about. I am looking for recommendations on personal alarms that she can set off easily enough. She is also going to have to be escorted (at least visually, from point A to point B) to friend's houses and back home again. And I am going to be all over the wheelchair place on Monday for screwing around with her order (months ago) for a new harness.

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Friday 08-08-08

Scared Me Half To Death!!

So I am at a meeting at church, and I get this text message:

"Mom, Erinne hurt her neck she fell in a ditch but she is home."

I don't EVEN need to tell you what I was thinking! I grabbed my stuff and ran out the door. I called Kevin and talked to a very tearful Erinne. She didn't 'quite' fall in a ditch --- but one of her tires hit a big hole in the grass (which, because the grass hadn't been cut recently, she could not see)  and she got whiplashed. Her harness was choking her because she was thrown forward and she couldn't reach her phone to call Kevin for help. She said she was stuck for 15 minutes before anyone came. (I don't know how accurate that is but I am sure it seemed like an eternity to her.) So she was very weakly calling "Help! Help!" Some teens saw her not moving (couldn't get out of the hole) and one of them came over and helped get her out of the hole. As I am driving home as quick as I can, I'm asking her if anything is tingling or if she can move her fingers and toes and can she see ok. She said everything worked, but she had to lay down and have pain meds. I asked her to put Kevin on so I could try and get more info out of him to decide if I needed to call 911. We ended up deciding that she could lay down in her bed and Kevin could give her some pain meds and I would reassess as soon as I got home. She seems to be okay and has no tenderness or loss of function/range of motion as I manipulated her neck. THANK YOU LORD for watching over her!!!!

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Sunday, August 3, 2008

Almost Back To Normal

Well it's been an up and down week, but we're mostly on the up now. The pain issues peaked on Wednesday. She also saw her cardiologist for a check up. She had an EKG, echocardiogram & a hoelter monitor done. Everything so far is unchanged from her last visit 2 years ago so that is a great thing! Thursday was better. Friday she went to get all her curls cut off (!) The highlights are gone too (she sure liked them, though, and would like them again!) She also played her baseball game on Friday.

Saturday was not a good day. Her heartrate was very elevated through the night (140s-150s). Oxygen levels were low. She woke up at 12:00pm with a temp of 101.1 and yellow junk she was coughing up. I called her pediatrician at home and we discussed what it could possibly be and what we should do. (Let me just say that we have the KINDEST, most CARING doctor around. She has ALWAYS been there for Erinne for the past 10 years. We love you, Dr. Mirta Soler!) So we decided to just wait Erinne out and see if she developed other symptoms. She went back to sleep at 3:00pm and slept till 9pm. She was awake until midnight and was fine. No symptoms of anything today. Go figure!

She's been kind of emotional today ---- must be hormones.

This week she sees the otolaryngologist to take a look at her vocal cords to see if they are working correctly (she has that 'breathy, whispery' voice.)

19 days till we move!

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Monday, July 28, 2008

Not The Best Of Days....

Evenings and night time continue to be painful for Erinne. Yesterday she was in her chair and outside for a while, enjoying the sunshine and did well. Last night.......not so well. I finally resorted to giving her an injection of Torodol, which she was none too pleased with. Today she has not gotten out of bed and has been dozing on and off, and whimpering in her sleep. Heartrate is elevated, no doubt from the pain. She keeps asking to be repositioned about every 30 minutes. I talked to her surgeon this afternoon and he is concerned about the pain (partly because she has not had this level of pain before for just a rod extension. (I know -- "just" an extension -- I don't take it for granted.) All I can say is I hope tomorrow is better. Keep the prayers coming!!!
 

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Saturday, July 26, 2007

Turned The Corner

FINALLY ---- some GOOD news to report. Erinne is feeling more and more like her old self. Last night was still rough -- she woke up several times and was begging for pain medicine or valium or anything to take away her pain. Again, we tried everything. Not much helped.

But by afternoon, she was feeling pretty good -- well enough to get dressed, go downstairs, get in her chair and head outside for a little while and enjoy the sunshine. YAY!!! Today was also the first day in five days that was interested in eating again. (Ah, the benefits of a feeding tube -- no worries!!!) She was not up to attending her baseball game (mom's decision) today. Just driving and hitting the usual potholes and road seams puts her in pain. She did lay down a couple of times earlier today and asked to be carried up to bed at 7:30p (although NOT to sleep!)

But all in all, MUCH better than the last couple of days. (The incision looks better too, as well as the big raw spot on her shoulder. She said I do good dressing changes. :-)

The timing was not great, but our apartment complex had a garage sale this weekend. Since I have a ton of stuff to get rid of (mostly medical supplies and medical equipment that Erinne has outgrown) I attempted to squeeze that in on top of everything else. The most noteworthy event occurred when I was trying to set up the glass patio table with the sun umbrella, and the table shattered ....and the crumbled glass landed on my foot which was only wearing a sandal. This type of glass is supposed to crumble, but I did have a couple of glass shards land on my foot, cutting it up. Juuuuust ducky. Had to call Kevin on his cell (he was in the house, upstairs with Erinne) and ask him to QUICKLY come outside and help me get in and stop the bleeding. (And I don't want to hear ANY comments from the peanut gallery (my family) here about my nickname ---- "Grace". Fortunately, I just picked up some surgical steri-strips for Erinne's back and I was able to put them to use on my foot. What a mess!

Keep your fingers crossed for a better night
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Thursday, July 24, 2008

Rough Day/Night

We arrived home around 8:30pm last night and Erinne was in quite a bit of pain. The pain continued late into the evening, despite several pain med combinations. The dressing on the incision was soaked and had to come off. Very painful process. She finally passed out around 11pm I think it was. Woke up crying again during the night in a lot of pain. Morning was better and by afternoon, she wanted to come downstairs. That lasted for only a short time and she was in major pain again and asked to be carried back upstairs and be put back to bed. More pain med combinations, and back to sleep. Then after she woke up again, I took a look at her dressing on the incision and it was saturated, so it had to come off.  A LOT more pain -- some of the skin above the incision peeled off, almost like what you would see with a second degree burn. The incision itself continues to bleed, which is a bit worrisome to me. She had a small catheter under the skin infusing numbing pain meds (just like the last surgery in January) but the medication seemed to be oozing out through the incision this time instead of being absorbed, and contributing (I think) to the bleeding. So I pulled it out (before we left the hospital, her surgeon made that suggestion, if the oozing continued to be a problem.) It has just been a difficult evening all the way around. Erinne was panicking and starting to hyperventilate through all her tears. So far, this post op has not gone quite as well as the last 2. I don't know if it is because she "grew" 3/4 of an inch on the operating and the nerves around the spine and discs are hypersensitive and adjusting to that big change or what the issue is. But it sure has been ROUGH today. I feel so bad for Erinne. I just want to make her pain go away!! I am praying that tomorrow will be better for her.

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Tuesday, July 22, 2008

Back Surgery #4 Update

All went VERY well today!
 
I took Erinne into the OR at 2pm and, after putting her to sleep, they finally started around 3pm (after positioning, intubation & trying to get a dang IV in!)  I got a call from the OR at 4:30p saying they were closing up. Her surgeon came out at 5:30p and told me everything went well. He said, "She's in quite a growth spurt" (YA THINK??!) The 1 rod grew 16mm and the other 17mm. This is on top of the growth she just did in January! I got back to recovery at 6:45pm to see her (finally!) She got up to her room around 7:30pm. She is still intubated (11pm) and we'll leave her on the vent until tomorrow morning. (No sense extubating at midnight and tempting fate!!) She is resting very comfortably and tells me (hand signs) that she has no pain.

I still hope to be out of here & home tomorrow afternoon.
 
Thank you for your prayers and concern.


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Sunday, July 20, 2008

Still On Schedule

Just a quick note from us ----- all is still well here and <fingers crossed>, Erinne is still scheduled for surgery on Tuesday. Kevin goes in for a pneumonia recheck on Monday. I hope to be back home with Erinne after surgery on Wednesday afternoon.

I didn't get a chance to mention before (due to all the computer problems we had) but Erinne got to go to the Jonas Brothers concert July 5th with her best friend Olivia. Olivia's dad brought ear plugs for everyone :-). Even Latte kept her ear plugs in! The show started over an hour late due to sound system issues. Unfortunately, that lost hour cost Erinne the ability to last long enough to stay for the entire concert. Her back just hurt too much! She really needs this surgery done ASAP because of the increased pain and inability to sit in her chair for more than a few hours at a time.

We weren't able to meet with the Jo-Bros (what a bummer!) but I was able to give their bodyguard a gift for each of the boys which had the red, blue and yellow Erinne wristbands in it, along with her signature pen and magnet and a little card about her. I HOPE they got it!!!

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Long Overdue Update

My computer is broke! Sorry for the lack of news here! In a nutshell:

Erinne is scheduled for scoli surgery (# 4) 7/22 Tues. She has a lot more back pain and has trouble breathing at certain times, like after a meal. She has been in a HUGE growth spurt and I wouldn't be surprised if we hit the 5' 6" mark after this next surgery. Last time she was weighed she was 110 lbs and I am sure that she's passed that. We've also been having problems with her low oxygen levels and higher than normal heartrate while sleeping. I've replaced her bi-pap machine, pulse oximeter monitor and began breathing treatments again. If things don't improve after her surgery next week, then I am going to have to insist that the docs consider putting Erinne on a ventilator at home (noninvasively -- no trach -- using the breathing masks she currently uses.) She went to see her surgeon, Dr Mendelow, today for x-rays. Her curve is unchanged from January (big yay!!!) but the space between her vertebra is shrinking a bit, which means she does need to be "sprung"? (Tension released on the rods.)

Kevin is fighting off a pneumonia in the left lung. No temp, no swollen nodes. He's on an antibiotic, steroids, an inhaler and NightQuil. HOPING Erinne doesn't catch it or surgery is going to be rescheduled!
 
My recovery from my 3rd surgery to repair the fractured ankle from when I fell on the ice 18+ months ago is NOT going well. I was supposed to stay off of it for 30 days in order for a callous to form on the ends of the talus and tibia (right now the bone ends are rubbing.) Well, that hasn't happened. One, how can I expect Kevin, who is dealing with pneumonia to carry his (not so little) sister up and down the stairs? Two, I am not a stork and I can't stand on 1 leg indefinitely and Three, who the heck is supposed to take over for me with Erinne? So this surgery has been a bust and I'll have to go for surgery # 4 -- cadaver cartilage placed between those 2 bones. I'm waiting until Sept when Erinne is back in school.

We've been taking it easy, especially with the van still in the shop (DON'T EVEN GO THERE!!!!!)  and all of us laid up with one ailment or another.

I'll update again after surgery is through on Tuesday......I promise!!!!

Love and hugs to all........

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Thursday, June 26, 2008

Bad News / Good News? --- DON'T ASK!!

It is that 3 letter bad word again around here ---- STUPID VAN!! Hottest day if the year here (90-something) and the van dies in the middle of the busiest freeway at 1:30pm!! I also had a semi on my tail as the van is slooooowing down in the middle lane, and I was desperately trying to move into the right lane (another semi in the way) and get to the shoulder. I also had to find a place on the shoulder where I could have enough room to put my side WC lift down, and still keep the left side of my van out of traffic. I called for a tow truck and then called the Huron Valley EMT that we know (Jessica C) to see if there was any way one of their non-emergency WC vans could possibly make a "side-of-the-freeway-nonemergency-pick-up" of Erinne! THANK YOU Jessica for making that happen!! I don't know if Huron Valley Ambulance has ever done that before, but they were sure a Godsend -- especially  for how quickly they got there too! I found out that the computer module that was supposedly put in last year (remember in August when this "service" station had my van for 6 WEEK to replace this part? Yep -- same part!) I found my invoice and it says it is a warrantied part if it is less than 12 mos or 12,000 miles (which it is.) BUT.... BUT....the station owner leased the garage to another company and he has since fired them and hired other mechanics. His mechanic on duty told me I'd have to find the original mechanics  but I told him to think again --- that is NOT my problem! HIS name is on the invoice and he is the one who has to honor the warranty. I am still waiting for a call back from the owner. If he isn't going to honor the warranty, then I am calling the news stations!

But there ARE kind people out there.... (besides Jessica C, who saved the day!) Our friends the Raymonds just bought a second WC van - full size, because their son Alec (Erinne's hockey/soccer/camp buddy) has gotten Soooo tall since he had his scoliosis surgery that he doesn't fit in their WC mini van. They are going to sell it --- but in the meantime, we will be able to borrow it so that Erinne won't miss her PT/OT and doctor appts next week. THANK YOU SO MUCH NANCY AND BOB!!!!!!

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Friday, June 13, 2008 / 12:15am

"What Time is It?/SUMMERTIME!/It's Our VACATION!"

Erinne awoke to that song blasting her out of bed this AM (It's from High School Musical 2). They also played it over the loud speaker at school as the FINAL bell rang!

Lots going on this weekend ---- I will update Sunday night when I have a little more time. Tomorrow (Saturday) at Erinne's Miracle League baseball game at 11am, Detroit Tiger Jeremy Bonderman will be at the game for the kids to meet and get autographs. (Jeremy is not playing right now [he's a pitcher] due to a blood clot in his arm.) Erinne is VERY EXCITED to meet him! Then right after the game, she is having her skating birthday party with her friends. Then on Sunday, she heads up to Lexington, MI for MDA Camp! And as an aside, I will have my 3rd surgery on my ankle (as a result of my fall on ice 18 months ago) on Monday. I'll have 4 days to rest it before I head up north to pick up Erinne.

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Friday, June 6, 2008 / 7:30pm

The Girlies Are Home!!!!!!!!!!!!

Erinne looks GREAT -- her skin is the color of nutmeg already!! (Definitely doesn't get it from ME!) She was a bit hot and sweaty but had a big smile on  her face. Latte looked absolutely EXHAUSTED!!!!! And a few pounds lighter! I guess she stayed quite busy with the other doggies, when she wasn't keeping an eye on Erinne. The dogs had their own fun camp races -- Someone would throw a stick into the lake, and it was a race to see which of the 7 dogs could retrieve it first! Latte slept all the way home and through the rest of the afternoon. She'll be getting a bath shortly, so I can check her for lil' hidden critters before she climbs in bed with anyone! Erinne loved her new partners, Melina and Anuja, both (pre) med students at U of Mich. Erinne said the best part of camp was tree climbing. (That was not Latte's favorite activity! She did not like Erinne "disappearing" on her.)  Erinne was VERY happy the Red Wings won the Stanley Cup while she was gone, but a little sad that she missed it. I assured her that we have it all saved on the DVR. We stopped by school for a quick visit at the end of the day with her friends. She was too hot to stay for long! She wanted a shower right away and then wanted to nap. I discouraged her from taking a nap at 4:30pm, because then she'd be up all night! (And I am too dog tired to stay up all night with her!)

 

 

Thursday, June 5, 2008 / 8:15pm

I've Heard From Camp!!!!!!

.....Not from Erinne, but one of the camp directors (I couldn't help but get a pit in my stomach when I heard who was calling.) She prefaced the call by saying, "Erinne is just fine" (whew!) She just needed to let me know that Erinne's partners needed to leave camp tomorrow by a specific time and they wanted to be able to say good-bye to Erinne and not she saying good-bye to them. She said Erinne was doing great, having a fun time. She complimented Erinne, saying she was very knowledgeable and articulate about her care and needs and was very polite while doing so. I asked how Latte was doing, since it was Latte's first time at camp. Latte is having a BALL! She has enjoyed the company of the other dogs, running and romping --- but always keeping an eye on Erinne! The only time she got upset was when Erinne went up in the air, 30 feet into the tree house, and disappeared! I was told she was very distressed and would not be consoled until Erinne came back down. That is indicative of how  tight their bond is! Latte started off sleeping on the foot of Erinne's bed, but soon figured out that the girl next to Erinne was a little wisp of a girl and there was much more room on her bed! So Latte moved over one bed and kept watch on Erinne from a more comfortable perch! The little girl was thrilled, because her golden retriever didn't come to camp. It was very hot today, and apparently the dogs wore themselves out! Guess  I'll have a quiet puppy (and probably girl) for a few days! I can't wait to pick them up tomorrow morning!!!

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Tuesday, June 3, 2008 / 8:45pm

Camp and Baseball

Miss Erinne is off to camp!!! We dropped her (and Latte) off on Sunday. She was all smiles -- both of them!! There were 6 other dogs in camp, all running free (some service dogs, some pets of the volunteers) and Latte didn't know what to do first --- hang with the big boys, or follow Erinne! She loved being with the other dogs (and there were no "alpha dog" problems) but, she's been trained to always follow Erinne. When Erinne would start to drive away, Latte would follow her and then run back to the other dogs. It was cute to watch. Erinne said she was going to keep the vest off Latte this week, giving her a 'vacation' too. But it has been so ingrained in Latte that she must always stay with Erinne that she won't let Erinne out of her sight. 

Of course the journey to camp wouldn't be complete without VAN problems, aye? Three days before dropping her off at camp, I had to get new brakes and tires for the van. Then on Saturday, the day before driving up to camp, the air conditioning/fan went out. Of course it was in the 80s. So today I find out that I didn't need a fan belt as I had hoped ---- I needed a whole new motor!! Aargh!! 

Erinne played in her first baseball game last Saturday. She LOVED it! She also likes the fact that her friend Jessica is on her team too. Latte of course does not like having to sit in the bleachers with me. She'd much rather be on first base with Erinne!!

 

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Tuesday, May 27, 2008 / 12:00pm

Miracle League of Michigan

Erinne will be starting her newest sport -- wheelchair baseball! Check out Miracle League's website: http://www.michiganmiracle.org/. Erinne will be playing on the Tiger's team with her friend Jessica. Here is her schedule:

Sat 5/31/2008 12:30pm

Sat 6/14/2008 11:00am

Sun 6/22/2008 1:30pm

Fri 6/27/2008 7:00pm

Sat 7/5/2008 11:00am

Fri 7/11/2008 7:00pm

Sun 7/20/2008 12:00pm

Sat 7/26/2008 12:30pm

Fri 8/1/2008 7:00pm

Fri 8/8/2008 7:00pm

Sun 8/17/2008 12:00pm

Sat 8/23/2008 12:30pm

All games played at the Miracle Field, 26000 Evergreen, Southfield (south of 11 Mile Rd). Turn left into the Southfield Municipal Complex and look for the Miracle League signs. Hope you can make a game or two !!  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Wednesday, May 21, 2008 / 10:15pm

This-n-That

Nothing earth-shattering to report ... yay!! Erinne's Miracle League baseball  starts next week. (Schedule will be posted on the first page of this website.) She heads up to "U of M Vent Camp" on June 2nd. She is VERY excited to head to camp. Then she'll be home for a week, and will finish out the last week of school, then she'll head to MDA Camp. Such a busy June! She'll be celebrating her birthday with her friends  on June 8th. (Friends, don't worry if you haven't gotten your invitation yet -- they haven't been sent out No one will be excluded!) Then Erinne and her BFF Olivia will see the Jonas Brothers concert on July 5th and after that, back surgery again. Erinne's good buddy Alec just had scoliosis surgery yesterday with the best back doc there is -- Dr. Michael Mendelow. This was his first surgery and he had his spine fused. Erinne has been very concerned about Alec and insisted on going to the hospital today to see him.  She's been busy with PT and OT twice a week and numerous trips to get her wheelchair issues addressed (and there are MANY.) I'm getting PT on my back three times a week, but still dealing with muscle spasms on a daily basis. It hurts so sit, stand or walk when the spasms are going strong. No special plans this weekend, other than Erinne wants to plant some flowers this weekend!! I have to take the van back in because I'm having problems AGAIN!! Trying to figure out when   we can do without it in between all her PT & OT appointments is the problem!!

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Friday, May 16, 2008 / 11:00pm

HAPPY 11th BIRTHDAY ERINNE ROSE !!!!

And thank you God for giving me another year with my angel-on-loan. My life has been so blessed by the privilege of being her Mom.

Erinne had a GREAT day at school, with her friends. Her wheelchair was, of course, a rolling birthday float, so everyone who saw her knew it was her birthday and wished her one. She asked for a set of youth-size golf clubs, because she wants to figure out how to golf from her chair. Of course she got them, as well as everything else she asked for! She invited a friend out to dinner and a movie and he was supposed to call her once he got home, but he must have forgot, and she didn't have his number. So she didn't get to do that, which left her pretty bummed. So Kevin and I took her out to dinner and then to a sporting goods store in the mall, so she could pick out a cool hat like all of the cool guys wear! She must have thanked me a dozen times for her presents. We have more fun plans for the rest of the weekend!

I love you so much Rosebud ... infinity x infinity x infinity !!!!!

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Wednesday, May 14, 2008 / 11:30pm

Tough Times

Without going into a great deal of detail, I just want to say that I'd appreciate a good thought from you and a spare prayer. Things have been a little tough for all three of us lately.... issues, health concerns, choices, day-to-day existing .... I'm exhausted and completely wrung dry (is that a word?) The only thing I can comfortably disclose is that Erinne has some significant tailbone and hip pain that we can't find a cause for, and subsequently treat. I can't keep giving her narcotics to cover up the pain. I appreciate your good thoughts......

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Tuesday, May 13, 2008 / 11:30pm

Keep Holding On....

New song on the first page (thanks MJ for setting it up for me) ....

Erinne and I talked about it and she said the song talks about our relationship and her fight against SMA. Pretty insightful for an (almost) 11 year old:

 

You're not alone / Together we stand / I'll be by your side / You know I'll take your hand

When it gets cold / And it feels like the end / There's no place to go / You know I won't give in

No I won't give in

Keep holdin' on / 'Cause you know we'll make it through / We'll make it through / Just, stay strong
 

'Cause you know I'm here for you / I'm here for you

There's nothing you can say (Nothin' you can say) / Nothing you can do (Nothin' you can do)
There's no other way when it comes to the truth

So, keep holding on / 'Cause you know we'll make it through / We'll make it through

So far away / I wish you were here / Before it's too late / This could all disappear

Before the doors close / And it comes to an end / With you by my side / I will fight and defend
I'll fight and defend, Yeah yeah

Keep holdin' on / 'Cause you know we'll make it through / We'll make it through /

Just, stay strong

'Cause you know I'm here for you / I'm here for you

There's nothing you can say / Nothing you can do / There's no other way when it comes to the truth
So, keep holding on / 'Cause you know we'll make it through / We'll make it through

Hear me when I say / When I say I believe / Nothing's gonna change / Nothing's gonna change destiny

Whatever's meant to be / Will work out perfectly / Yeah, yeah, yeah, yeah..

La da da da, la da da da da / La da da da da da da da da

Keep holdin' on / 'Cause you know we'll make it through / We'll make it through / Just stay strong
'Cause you know I'm here for you / I'm here for you

There's nothing you can say / Nothing you can do / There's no other way when it comes to the truth
So, keep holding on / 'Cause you know we'll make it through / We'll make it through

Ahh, ahh / Ahh, ahh / Keep holdin' on / Ahh, ahh / Ahh, ahh

Keep holdin' on / There's nothing you could say / Nohing you could do / There's no other way when it comes to the truth / So, keep holding on / 'Cause you know we'll make it through 

We'll make it through.....

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Sunday, May 4, 2008 / 11:15pm

It is ALWAYS Something!!

We had our wheelchair appointment on Friday. We have been trying to find the right seat cushion for Erinne's chair. When you sit on your bum all day and can't even shift a cheek to adjust your weight, the right cushion and fit becomes sooo important. (Think about how often you shift back and forth while you are sitting. Erinne can't do that at all. Once I plop her into her chair, that's it -- she doesn't move.) Anyway, this is the 4th seat cushion we've tried and I HOPE it is the last! However.... (and there is always a 'however', isn't there?) we found that Erinne managed to break one of the coils/struts ---- uh, important part of the support system in the frame of the chair. I don't know how it happened.... I had her on the lift getting out of the van and up the ramp into the  house when I noticed one of the big drive wheels wasn't touching the ground at all. (she has 3 wheels on each side, the middle wheel being the drive wheel.) I got her into the house with a great deal of effort and out of the chair. I tipped the chair sideways to see if I could see what was holding the wheel up. I couldn't find anything and I couldn't get the wheel to go back down. So I sort of 'dropped' it as I set it back down. (Same concept as hitting a vending machine when it doesn't give you the snack that you've already paid for!) Well, the wheel came back into place, but the strut or whatever that thing is was bent. By the time we got to the wheelchair repair place a few days later, it was broke in 2 pieces.) The wheelchair guys took a look at it, and kept calling more people into the room to see it. (Sort of felt like being a patient with a really weird disease or growth that doctors keep calling more doctors into the room to look at!) They took pictures and are sending it back to the manufacturer to show them what broke. Because of that break, all the tires are wearing out and all  will have to be replaced -- they aren't even 4 mos old yet. *Hopefully* (major fingers crossed here) it is still under warranty -- or we are royally screwed!

On Wednesday Erinne will been seen in the Pediatric Home Ventilator Program clinic (another U of M clinic where the specialists all gather and come to you) and then off to the cardiology docs for a 2 year check up. The vent folks (MDs, RNs, RTs) are the ones taking her to vent camp the first week in June (yep, she's missing a week of school!) so I'm sure we'll touch base on that. On Thursday she sees her pediatrician for her camp physical and a bunch of follow up routine lab work (because of her specialized diet and all the meds she is on.... we have to watch her liver function). Next week Monday Erinne starts back up with PT twice a week in addition to her already twice a week OT. Of course NONE of these appointments are close by....and with gas approaching $4/gal, the cost to fill up my gas-guzzling van's tank is $125! It just KILLS me! In fact, I won't fill it up. Makes me too sad. I'd rather put in $30-40 at a time (usually all that's in my wallet anyway!)

And, the icing on the cake....the wood ramp that I use to get Erinne in/out of the house finally succumbed to wood rot and one of the wheelchair wheels punched a hole through it. sigh! It was homemade and just made of pressed wood, not weather proof or anything, but it was all we had. And it was too ugly for anyone to steal more than once. (When we first moved here, some kids took it for skateboarding but I was able to find it with a little help from the postal carrier.) I have a heavy folding metal one (that we use to get Erinne from the dining area/kitchen to the living room), but I can't leave that out because that WILL be stolen. So now I have to haul it in and out, depending on where Erinne is at the moment.

Yep, life in the Williams household is just a laugh a minute around here! :-)

 

Thursday, May 1, 2008 / 7:15pm

Busy Day Yesterday

Yesterday was a very long day out at the U of M hospital. Erinne was seen by 10 specialists. They set it up so that all of the specialists come to 1 clinic and see the patients, rather than you have to trek off to 10 different offices with the end result being a lack of coordination between what every specialist recommends. After all the specialists see the patient, then they meet at the end of the day to discuss their findings and make a joint recommendation, which I will receive in about 2 weeks. Erinne saw a plastic surgery team, oral-maxillofacial team, orthodontic/dental team, a speech pathologist, nutritionist, social worker, neuro-psychologist, audiologist and I can't remember who else! I know that the start of the care plan will involve the orthodontists and the speech pathologist and the end of the care plan will be oral-maxillofacial surgery when she is about 16 years old.  She was a little overwhelmed by the whole experience, in part, because she understands a lot of what they are talking about (one of the times when being smart has its consequences). The thing I found the most interesting (and didn't have a good understanding of) came from the speech pathologist. Erinne has never had any problems with her speech. But the speech pathologist noted that because of Erinne's significant jaw and bite problems, she has learned to make certain sounds differently -- compensated for her deficiencies. And, as many of you know, Erinne has a very soft, breathy voice. I was told that it was the result of her 85 day intubation  back in 2001. I was told at the time that she might never talk again, after that long of a period of time with a tube down her throat, between her cords. So I considered ourselves lucky that she could still talk. The speech pathologist asked me if anyone has ever looked at her vocal cords, to see if there are any problems that could be fixed. (Nope -- no one has ever mentioned it!) And when all of the work is finally done on Erinne's mouth, an her teeth and lower jaw are in different positions, she may need some speech therapy to teach her new tongue positions to form certain sounds. It was a very draining experience with the tendency to overwhelm us. I just have to take it one step at a time. We were there for 6 LONG hours and didn't make it for her wheelchair appointment (still having problem with her chair) which was bumped to tomorrow morning. More news after that.........

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Tuesday, April 29, 2008 / 8:30am

More Doctor's Appointments

Erinne is doing well. Tomorrow we have an all day appointment out at The University of Michigan Hospitals with the crainofacial surgical team. Because of her reliance on bi-pap at night to keep breathing (kinda important!), her upper jaw is growing at a slower rate than her lower jaw. The term for this is midface hypoplasia. She has a mouthful of top teeth that have absolutely no place to go. Orthodontics alone is not the answer -- you've gotta have the jaw space to work with first. Hopefully we'll come out of there with a plan to get her facial bones and teeth in the right positions. It will require extensive work. She's a bit nervous about the appointment, so please have a good thought for her.

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Tuesday, April 22, 2008 / 8:45pm

Miss Rip Van Winkle??

Erinne slept for 15 HOURS last night!! Needless to say she didn't make it to school today! I can tell by one of her monitors when she is in a very deep sleep and I have learned that it is foolish to try and force her to wake up when she is there. She seems to be okay. I think we had a little bit of food poisoning from yesterday's first BBQ of the year. We had steak that I just picked up from the store that afternoon. My night was horrid and after reading up on salmonella and e.coli food poisoning, I am convinced that's what we had. Erinne had a stomach ache and cramps during the night (but she never woke me up to tell me) and a bit of one this evening. I am better, but am not the least bit interested in eating today! Erinne wanted to BBQ again tonight but I told her I wasn't going anywhere near that grill today! Not sure if I am brave enough to try again tomorrow.....

PS. Woo-Hoo --- Way To Go Ozzie!!! GREAT job sending those Predators packing! On to the 2nd round! The Wizard of Oz has spoken!! Erinne sends hugs and high fives!

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Wednesday, April 9, 2008 / 10:45pm

DISAPPOINTMENT!!!!!

I received an email yesterday from the Red Wings front office that said,

"I want to let you know that we did receive your fax regarding your daughter Erinne and your special request. I regret to inform you, that a practice visit and meet and greet won't be able to happen this season. We stop all practice visits in March as we approach the postseason. At the same time, the team becomes unavailable for any meet and greets or other appearances as well. They are so gracious during the regular season, once the playoffs roll around, Coach Babcock requires their undivided attention."

I have been trying for MONTHS to get Erinne in to see a practice -- since last year -- and the first and only reply I've gotten is this one. I haven't even told Erinne yet....she is going to be soooo disappointed!

Anybody have any ideas?

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Monday, March 31, 2008 / 11:15pm

Spring Break's Over!

Erinne returned to school today -- happily. But she did manage to pick up a virus called "Fifth's Disease" sometime last week. Where, I don't know. She isn't contagious anymore and has a sort of a "lacy" rash over most of her body which stays pretty faded, unless she gets too hot. Which she does often at school! Her back still looks good --- stitches still intact, incision clean and dry. The stitch material is a type of monofilament (looks like fishing line!) and may take up to 90 days to dissolve.

We're still waiting and hoping to get an invite to watch the Detroit Red Wings practice SOON!!! (A practice would allow her to watch the practice from the penalty box and then visit with most of them individually afterwards.). We want to give them one of her terrific wristbands too. (Didya get yours yet??) Anybody have any connections/ideas? I've written them twice and still haven't heard anything.

The Jonas Brothers are coming to Detroit in early July and we are trying to get accessible tickets. We tried to get accessible tickets to the Hannah Montana concert last November and despite calling in August and being 3rd on the list, we ended up going into a lottery and LOST out! I am also working on a backstage pass for her to meet the Joe Bros. That would just make her heart swell!

Well, it looks like the family bowling fundraiser for the van is a no-go. Not enough help/interest to pull it together. :-(

The fundraiser that my beloved brother and sister-in-law, Gregg and Jodi, in Kentucky, put together (a luncheon after a church service) brought in $7,500 for the van!! I am so very, very blessed that they care so much. Jodi put A LOT of work into it (THANK YOU JODI!!)

Erinne has sold about 100 wristbands ($200) all by herself! Many friends and just plain ol' people who care, have taken wristbands to work, bowling, church, etc to sell them for her. Such a diverse group too --- a couple of the Huron Valley EMS folks, all of her school nurses, the school district bus drivers, building custodian, librarian, principal, school friends' moms, hockey moms, her doctor's offices, summer camp counselors, her school friends going around the neighborhood.....the list is unbelievable!!!  We have been so blessed! Hopefully you'll be wearing one soon, if you aren't already! (Now to just get them on the Red Wing's wrists and some of the TV news people. They are one-of-a-kind and pretty recognizable. Special THANKS to those of you already out there selling them and spreading awareness about SMA and Erinne!

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Sunday, March 23, 2008 / 12:00am

A Very Blessed Easter to You!!

Erinne is doing quite well. No post-op problems, no pain and the incision looks great. (I am feeling better, after finally getting a hold of an antibiotic for my sinus/ear infection). She's already "bored." My little social butterfly tried to talk me into going to school on Thursday (the last day before break) and the day after her surgery. Ahh, I DON'T think so! We did make it to church on Good Friday. We also got 7 freaking inches of snow Friday night, which curtailed any thoughts of a little outside time on Saturday.  We hope to visit with a few friends (that she doesn't see at school) this coming week, providing she (and her friends) all stay healthy.

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Wednesday, March 19, 2008 / 11:15pm

We're Home!!!!

The 24-hour tissue culture looked good, so we were give a strong antibiotic and allowed to go home!!! We got home around 7pm. If the 48-hour culture shows anything, then we'll re-evaluate what needs to be done. Erinne looks good, feels good, and has no pain. Thank You Lord!! (I've picked up a sinus/ear infection and don't feel so hot! :-( It was a very productive hospitalization in that it allowed us the opportunity to educate a few more medical folks (who had very open minds) about SMA and the important respiratory protocol that is so critical to the healing process. We also passed out quite a few wristbands and I left my 'SMA parent cards' so that if they get another SMA family on the unit, they can let the families know I am available to come up and talk with them.

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Tuesday, March 18, 2008; 8 p.m.

Erinne was extubated (taken off the vent) at 4pm and is doing GREAT! She has eaten dinner (pizza/salad), has been up in her chair briefly and is almost pain-free. Providence Hospital staff have been FANTASTIC and are anxious to learn about our protocol. We're just waiting to see what the cultures grow now. Thanks for your prayers!


Tuesday, March 18, 2008 / 1:40pm

POST OP UPDATE

Hospital Information:

Providence Hospital - Room 531

16001 W 9 Mile Rd
Southfield, MI 48075-4803
Phone: (248) 849-3000 (Just call my cell though)

Erinne is doing well. The area on her back that the doc had to open up was smaller than anticipated. He didn't have to go very deep, so she may not need the 2nd surgery -- HOPEFULLY. She had a reaction to the IV antibiotics so they had to give her Benedryl in the OR. The endo tube slipped down a little too far when we went from Recovery to the ICU so for a while it was only inflating the right lung. She was gagging, throwing up and had TONS of secretions till they pulled it back. She is still intubated/on the vent and is on room air already. As soon as we get the secretions under control, we'll extubate her. Hopefully this evening. Thanks for the prayers and good thoughts.

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Monday, March 17, 2008 / 12:45am

This Will Be Quick

We're back (LATE!) from Kentucky and I am very behind in unpacking, laundry and repacking so this will be sort and sweet. We're back from KY --- it was FABULOUS!! -- and I'll write more later. We're supposed to be at Providence Hospital in Southfield in 5 hrs (NOT!) and I haven't been to bed yet. Surgery is scheduled for 7:30am and then she's off to the ICU. I'll post more tomorrow.

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Friday, March 14, 2008

Good News/Bad News

So here's The Good News: We are still leaving for KY today -- but behind schedule since we spent all AM at the Drs office and I haven't packed yet.

The Bad News: Erinne is boarded for surgery on Tuesday. The hardware is okay/not the problem. The timing is right for a deep tissue infection from the surgery 8 weeks ago to surface about now. She doesn't need to run a temp in order for this to be an infection. The doc has to go in and take a look and flush things out. We can't run the risk of just using oral antibiotics because we're talking about the spine and lots of hardware. He'll also implant antibiotic beads. She'll get IV antibiotics and then go back into surgery 5 days later for another flush and then have an antibiotic sponge implanted and connected to a pump and likely go home with the pump. She'll be in the hospital at least a week. Our 2nd Easter in the hospital! ;-(

He is okay with us going down to KY, providing she doesn't develop new symptoms or the hole in her back gets bigger. If it does, then we have to come back right away. Erinne told him she didn't care what he does to her next week --- she just wanted him to allow her to take this trip.

Okay -- now that I am thoroughly stressed out, I gotta pack. Please pray for Erinne, and that the van gets us there and back!!!!

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Thursday, March 13, 2008 / 11:15pm

PRAYERS PLEASE!!!!

Okay -- so we are supposed to leave for KY tomorrow afternoon. Erinne has been complaining of back pain for about a week and I talked with her surgeon this AM and he is going to see her the beginning of next week. He wanted to see her today but I was having work done on the van AGAIN so I couldn't take her.

I noticed yesterday at her bath that the old incision was a little red. Tonight, before her bath, the skin around the incision is red in an area about the size of a half-dollar ----- and there is a HOLE in the incision!! Like there is an infection underneath the incision, along the spine! (Her 3rd scoli surgery was 8 weeks ago -- Jan 17th.) The incision has been closed for 6 weeks. The hole wasn't there yesterday. She said it hurt at school and she had her nurse put ice on her back. She also won't let me touch her back around the incision and 2 inches to the left of it. (She doesn't have a temp, btw.)

So I called the surgeon again tonight (thank goodness I have his cell #). He is VERY concerned and wants her in the office first thing tomorrow AM. He said if it is an infection under the incision, she is going to need to go into surgery and have her back flushed out -- probably 2-3 times - and start on several IV antibiotics. OMG!! I hope and PRAY that this is not the case!

She is so upset. She is so looking forward to our trip to KY to see my brother and his family and we are also supposed to get together with one of her good SMA friends and her family!!

So please say a prayer that this is not a big deal, and that I can finish packing and we can head to KY tomorrow afternoon! ACK!!!

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NEW!! Erinne's Wristbands!!

                            

Wednesday, March 5, 2008

They're here!!! Check out the cool wristbands! This fundraiser involves the kids. Help us get the word out and support Erinne!!! This wristband is unlike any other you've seen. Suggested donation is $2.00 per band. Drop me a note if you'd like to buy some, or are willing to help us sell them. All money raised goes towards Erinne's new van.

 

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Thursday, February 28, 2008 / 10:00pm

Ahhhh, LIFE!

Erinne is still the same .... which is the GOOD news, considering her mother is a regular Typhoid Mary.  My bronchitis turned into pneumonia. We've switched antibiotics and I think the new one is starting to work. I am still very short of breath and my cough sounds like I am a 3-pack-a-day smoker. I can usually control my cough, unless I try to talk on the phone....or carry Erinne. Then I sound like I am choking on a giant hair ball. Not pleasant. Kevin's right leg is in a cast due to a stress fracture of the first metatarsal. He is on crutches and VERY VERY upset. Hockey season is prematurely over for him. He'll get a walking cast in 3 weeks. All this snow and ice does not make it easy for him to get between all of his classes -- he does a lot of walking outside. More snow is forecast for tomorrow. I can only pray for a snow day for him.

I am wishing I lived in a commune 'cuz I could sure use some help!!!!!!

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Monday, February 25, 2008 / 8:45pm

Been A Rough Couple Of Days

It's been a little tough around here the past couple of days.... Erinne is still trying to get over her pneumonia. Still lots of coughing. We went back to the doc's today for a recheck. Her lungs are clear --- but she still has this "junk" she's coughing up. We did another sputum culture and we'll see what that shows. Her doc is in the "wait and see" mode. She just doesn't have any other symptoms for us to treat.

Now Kevin's turn..... last Tuesday (2/19) at hockey practice he took a slap shot to the inside of his right foot/arch area. He was in a lot of pain. I took him to the ER on Wednesday and x-rays appeared to show a bone contusion. They gave him crutches, Vicodin and told me to ice it and give him Motrin. They also said that when he could get his skate back on and walk, he could play. Well, playoffs are going on right now, so on Friday he got his skate back on and showed me he could walk. He attempted to play on Saturday. He played the first period and part of the second -- but was in too much pain to continue. So he went in for a follow up appointment with the pediatrician today and she wants him seen by the ortho docs tomorrow. She thinks that he either has a stress fracture or damage to his big toe tendon.

And me? I have bronchitis -- and feel just awful~! I came down with it Saturday evening. I am having GREAT difficulty carrying Erinne up and down the stairs....obviously Kevin can't be of much help right now. I am so short of breath and dizzy. This morning when I was getting her ready for school, I thought I was going to pass out. It was scary. I can only hope that the antibiotics kick in tomorrow. Mom cannot be sick!!!!! I see the ortho surgeon tomorrow as well about my fractured left talus that we've been trying to nurse along, and my pinched right ulnar nerve (that physical therapy did not improve). It's a "two-fer" tomorrow at the ortho doc's with Kevin and I !!

And finally --- on the way to the doctor's today, the van started misfiring and lurching. PLEASE -- no more car problems!!!!

Lord, give me STRENGTH!!!!!

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Monday, February 18, 2008 / 6:30pm

Back To School!!!

Erinne returned to school today and did quite well, according to her nurse. She did need her cough machine a lot, but it didn't seem to slow her down at all. She came home without being worn out, which is always a bonus, and tackled her homework right away. We'll be heading to bed early tonight, just to be on the safe side. Thanks for checking in!


Saturday, February 16, 2008 / 12:45pm

Feeling Better!

Erinne is doing very well. The only thing that hints at her being sick is our every-10-minute fond attachment to the CoughAssist. She's eating fine and is not very fatigued, despite being up during the night coughing. The antibiotics are kicking butt! We are going to head out to the movies today to see the Hannah Montana 3-D movie with her good friends, Melissa and Jessie. Thanks for the prayers!
 


Tuesday, February 12, 2008 / 8:00am

What a Lousy Way To Spend Winter Break!!

Erinne developed a deep "smoker's cough" (sounds that way anyway) yesterday and used her cough machine throughout the day. Heart rate stayed high during the night and oxygen levels were a bit lower than normal. She also needed to use her cough machine during the night, which she never does. She woke up this AM with a temp of 103, a sore chest and generally feeling lousy. So we're off to the doc's today. Hope it's not pneumonia, but it sure is deep in her chest. I'll update after the doctor's appt.

9:40pm  Double Pneumonia!!

Erinne has pneumonia in both lungs (episode #17), and a pretty darn good case of it. X-ray looked like crap. Definitely not one of her 'milder' versions. I believe she aspirated some saliva 3 days ago while in bed --- and she does NOT have a history of swallow issues (which is a frequent problem with SMA.) I was right there with her when it happened and we used the CoughAssist machine right away, but obviously we didn't get it all. The doctor sent a sputum out for culture and she is on 2 different antibiotics. An aspiration pneumonia in both lungs is NOTHING TO MESS WITH!!!! We welcome your prayers. SIGH!!!!


Friday, February 08, 2008

Quiet Week

Well hopefully by now you know that no news is good news. I can't believe it has been over a week since I've written anything! Erinne is doing well - on winter break all next week. Today we went to meet with the folks at the "nutri-rehab" clinic at the Univ. of Mich. I wanted them to review what I've done with her tube feeding diet and see if they can explain why her hands and face have been so puffy, and why she had a 12 lb weight gain the last 4 months of last year when I changed her to an adult formula of her diet, which has no fat in it (as opposed to her higher fat pediatric formula she was on for the past 6 years.) I cannot explain why, if I took the fat out of her tube feedings an kept the calories the same, that she would gain weight (even though she is not eating more orally.) Weird. There is no 'manual' for SMA and the diet, so I fly by the seat of my pants on this. She had some more blood work done and they'll get back to me next week. I did find out that besides weighing 98lbs, she is now 5'5.5" inches tall!! I had NO IDEA she had grown that much! And it may not sound like a big deal to be five and a half feet tall and weigh 98 lbs, but she does not have the same amount of muscle mass as a normal kid so she should not weigh the same. According to the testing today, her "resting" caloric expenditure is 1260 cals and her tube feeding was about 1000 cals (I have recently reduced it to 650 cals). Orally she takes in anywhere from 200-600 cals a day. So something isn't adding up quite right. On the other hand, she may be just like my other two kids who, prepuberty, put on their weight before they added their height -- Kevin in particular. At age 10/11 he was just a butterball. Now, at 16 yrs, he's 6'3" (fortunately, taking after my side of the family height-wise) and looking at him in shorts, you'd say, "MAN, someone needs to feed that kid." Not an ounce of fat on him anywhere. I suspect Erinne will be about 6ft tall -- taking after her 6'8" father.

We have several appointments set up for next week, besides the usual twice weekly occupational therapy. On Monday, we are back to see the wheelchair people because her new seating that she just got on the 25th is not working for her. The seat cushion that she is on is not the one that she "tested" back when we picked out seating. The manufacturer made a substitution and her tush is definitely NOT liking the substitution!! She can't even sit on it for 60 minutes without complaining of pain. Frustrating, to say the least!


Monday, January 28, 2008 / 10:45pm

Post-Op Doctor's Visits

Erinne saw her orthopedic surgeon, Dr. Mendelow, today for her 10 day post-op check. Her x-rays look good and he is very pleased with her progress and especially how well she did this time post-op. Her next scoli/spine surgery will be planned for this summer -- probably July-ish. Erinne also saw her pediatrician, Dr. Soler, as a follow up to her pneumonia from late last month and also to address the sinus problems she continues to have. She also is a bit 'puffy', especially in her hands, and has been for about the past month. They managed to find a vein (gee, after the 12 veins that were 'blown' in pre-op, there was one they missed!) so they are running some labs to see if we can determine a cause. Erinne is also scheduled to see a metabolic specialist at the Univ. of Mich next month to help me figure out some problems I am having with her tube feeding diet. BUT -- she is healthy right now and for that I am very thankful!!


Friday, January 25, 2008 / 11:15pm

Wheelchair's Been Rehabbed, But Erinne Paid a Price

We went and picked up Erinne's revised/refurbished chair this afternoon, and also had her left arm cast for a new brace/splint. Her leg supports alone "grew" 3 inches since last year!!! The new seating and back cushion fit her much better. I asked them to up her "acceleration" mode just a bit as well as make the "stopping" mode a bit quicker. We were there for 3 hours and the chair fits great again. The drive is about 50 minutes but she had a very difficult time with it today. On the way there we had to stop once to readjust her seating and twice on the way home. But by the time we got home, she was just sobbing from the back/bum pain. I felt so bad for her. She went straight to bed and needed major pain meds - and then promptly fell asleep. My poor baby!


Wednesday, January 23, 2008 / 12:00am

A Much Better Day!!

Erinne went to school today for a half day and then off to occupational therapy (OT) right after school. I didn't think she would have enough energy, but she surprised me! Then after OT, we met up for dinner with our friends Malorie and Michelle, who live outside of Grand Rapids but were in Ann Arbor for pre-surgical bloodwork for her scoli rod lengthening surgery next Tuesday. The girls enjoyed their visit -- and sharing their dinners and dessert! But then Erinne "hit the wall" and said she was in pain and needed to go home. After pain meds, a shower, dressing (bandage) change, she went straight to bed. She's been awake several times already, so I know she's not very comfortable tonight. Tomorrow we'll try for a full day of school. She does not have school on Friday, but we have several appointments scheduled --- casting for a new left arm brace and FINALLY, FINALLY, new seating for her wheelchair!! She outgrew this chair last August and it has taken this long to get things moving (don't get me started!) I have to drop off her wheelchair Thursday afternoon and it won't be ready till Friday afternoon. They are supposed to have a manual chair available for us to use. I certainly can't carry this 99lb kid around for 24 hours!!!!!


Sunday, January 20, 2008

Bit Of A Rough Day

Erinne had a bit of a 'down' post-op day. She never came out of the bedroom....just went from her bed to mine and back a few times. She dozed on and off through the day. Pain levels have been manageable....general 'uncomfortableness' has not been. She had a belly ache most of the day but once the meds got going this evening to get her intestines restarted, she felt much better. She managed to eat only 2 spoonfuls of wild rice all day. Thank goodness for the feeding tube which has been running all day!

Kevin, on the other hand, has been sicker than a dog. Started with vomiting, diarrhea and severe lower back pain (kidney area) since 2am and at almost midnight, he still cannot keep even ice chips in. I am hoping and praying I don't have to take him to the ER tonight (what the heck do I do with Erinne?) He has taken 4 baths today & using the heating pad, trying to help with the back pain. I've given him Tylenol too, but of course he is having trouble keeping it down. He's not run a fever at all. I am hoping it is just a gastroenteritis, but I'm worried that it might be a problem with his kidneys, like a stone. I'm calling his (and Erinne's) doctor in the AM. He starts finals on Tuesday and hasn't been able to crack a book yet.

I'm sorta 'punchy' from the lack of sleep...seems like just as I get one kid settled down and I lay my head on the pillow, the other kid wakes up and either needs to be repositioned or is puking in the bathroom. Seems like having newborn twins around!!


Saturday, January 19, 2008 / 6:45pm

Recovering Nicely!!

Erinne continues to recover well. She had a decent night -- woke up a few times with pain, but went right back to sleep after getting her pain meds and a position change in bed. This morning I pulled out the pain pump (the meds were finished) which had a catheter (the size of a piece of uncooked angel hair pasta) running under the incision along her spine. Then she had a shower and afterwards I changed the dressing. She came downstairs later this afternoon and invited a couple of friends over to play video games. Didn't need pain meds till 5pm. But she found the sitting up on the couch to be quite exhausting and painful, and decided to go back to bed. She was asleep at 6:30pm, on her bi-pap an maintaining good oxygen levels.


Friday, January 18, 2008 / 8:00pm

HOME SWEET HOME!!

WE ARE HOME!!!!!!!! Erinne was discharged at 3pm today and we were home by 4pm. She was comfortable in her WC and sitting on the couch for 2 1/2 hours. But shortly thereafter, her bed was calling her and she was asleep by 7:15pm on Bi-pap and maintaining good oxygen levels. This was THE shortest intubation/extubation/discharge admission she has had to date (just 31 hours) She got out of surgery around 12:30pm and extubated at 7pm. She was on the phone shortly thereafter (!) and was watching hockey and asking for pizza. She 'grew' 12mm on one side and 14mm on the other and had a <50cc blood loss. The surgeon is trying a new pain management technique called the "On Q Painbuster" pump that delivers 2mls/hr of marcaine right to the incision site for a period of 50 hours. It cuts down on or totally eliminates the amount of narcotics (like morphine) that is needed for pain control. Might be worthwhile to file this info away for later..... (website: www.AskYourSurgeon.com) The staff at Providence Hospital were ABSOLUTELY PHENOMENAL!! They were so supportive and respectful of the protocol/care I follow with Erinne and showed a great deal of interest in learning and understanding it. Many people told me they took the written information I provided to them and copied it and shared it with their departments for when the next SMA child comes through the doors. I wanted especially to thank RNs Janice and Tracey, RT Michael, Intensivist Dr. Paula Chrazy and of course the brilliant orthopedic surgeon Dr. Michael Mendelow for making this such a terrific hospitalization. I won't have any reservations about going back in July for the next rod extension surgery. Such a relief!!! Anyway, thanks for your prayers and concern. I'm pretty wiped so I think I'll go crawl into bed while I have the chance!


Thursday, January 17, 2008

SURGERY DAY

Erinne was successfully extubated around 7 pm! She's doing well, watching hockey, and if all goes well tonight, may get to go home as soon as tomorrow!

3:37pm: Erinne is doing GREAT!!! she is on room air, still intubated, but getting 'cleaned out'. Hopefully she'll be ready to extubate in the next couple of hours. thanks for all of your prayers and concern. (PS. we're in room 531).

1:05pm ---- Talked to the surgeon -- Erinne did well. Lengthened 1 rod 14mm and the other 12mm. She has a marcaine pain pump infusing in her back to hopefully avoid or limit narcotic use. I reiterated over and over to keep her intubated till she gets to the floor. I'll update again after I see her.

It's 12:50p ----- still waiting to talk to the doc/hear how it went. (Surgery started at 9:30am) It's been a little longer than I expected. Hope to hear something soon.......


Wednesday, January 16, 2008

SURGERY TOMORROW

Erinne's surgery is scheduled for 9:30am, tomorrow, Thursday, 1-17-08 at Providence Hospital, 16001 W 9 Mile Rd, Southfield, MI 48075, (248) 849-3000. I am guessing the procedure will be about 90 minutes. She'll go up to the small Peds ICU afterwards. I don't know how long she'll be in the hospital ---- it all depends on her recovery and any complications she develops. Best case scenario is that she'll go home on Saturday. Since this is a new hospital for us, I am not looking forward to "breaking in" the new staff to the way we do things. I wish we were going to be with the Children's ICU staff --- we LOVE them! I am expecting and preparing for a battle over when to extubate her (take the breathing tube out). They like to take it out right away. I prefer to leave it in until she has had a chance to reach some important benchmarks (established by world renown SMA docs --- none of whom are here in Michigan) and I have a chance to give her a couple of breathing treatments and use her cough machine. I'll have all the documentation and research articles with me -- getting them to read it is a whole 'nother game. Thanks to my father (we joked about this today!) I can be pretty darn stubborn and very determined in my thinking. It is a wise man who does not attempt to come between a momma bear and her cub! I'll update this website during and after surgery. PLEASE keep Erinne, and her surgeon and the anesthesiologist, in your prayers! THANKS!!


Saturday, January 12, 2008

Surgery Has Been Scheduled

Erinne is scheduled (AGAIN!) for her scoliosis (spinal) surgery on Thursday, January 17, 2008. (Hospital information will be posted on Monday). This was the surgery that has been rescheduled twice from October. She sees her surgeon on Monday for spinal x-rays to make sure the rods already along her spine are in good shape and are able to be lengthened rather than replaced. We'd appreciate your good thoughts and prayers!


Thursday, January 10, 2008

Wheelchair Hockey Game Schedule

I've been asked to post Erinne's wheelchair hockey schedule. All games are played at Ward Presbyterian Church,     6 Mile & Haggerty in Livonia.

Saturday, January 12, 2008, 1:30p-3:00p

Saturday, February 9, 2008, 12:00p-1:30p

Saturday, February 23, 2008, 12:00p-1:30p

Saturday, March 8, 2008, 2:00p-3:30p (we might not be at this game)

Saturday, March 29, 2008, 12:00p-1:30p


Sunday, January 06, 2008

Vacation's Over :-(

Well after a lovely 2 week break (the majority of which was spent recovering from pneumonias), it is back to school tomorrow for Erinne & Kevin. Of course neither of them are looking forward to it too much. Kevin played in his second game since being diagnosed with pneumonia. Today's game was much better for him.

Erinne had fun swimming with 6 of her friends in our complex's indoor pool on Friday. The water was extremely warm! A few of the kids decided to run out the sliding doors and roll in the snow in their wet swimsuits and then jump back in the pool a couple of times. Erinne thought it was hilarious!

On Saturday, Erinne saw her sister Claire for the first time since April and took her sister out to dinner with a gift card she received from her friend Matthew and his family (thanks again, Curley's!) Erinne really enjoyed spending time with her sister and hopes that she will see her again soon!


Thursday, January 03, 2008

Happy New Year -- & May This Be The Year Of the Cure For SMA!!

Both Erinne and Kevin continue to feel better each day.

Erinne is having a couple of very good friends, Melissa and Jessie, sleep over tonight. Kevin played in his first hockey game since getting the pneumonia. He insisted he was "FINE, MOM" and well enough to play. (The doctor would have preferred that he wait until he was seen again on the 11th and cleared for hockey, but you know teenagers!) He has finished all of his antibiotics and other meds. Well, needless to say, it was a very rough game for him. He was struggling for air after each of his shifts (which are usually only 30-45 seconds long). Sometimes ya just gotta experience it to believe it, I guess. He did say he didn't expect to be so winded and he wished he would have taken his inhaler on the bench with him. Live and learn!

Erinne's scoli (back) surgery is now re-scheduled for January 17th -- hopefully!!!!