Journal Updates
2009

 

December 28, 2009 Monday

7th Spinal Surgery a Success ---- and Merry Christmas!!

Sorry for the delay in posting the good news. Chaos rules in this house! Erinne's surgery was a success and probably the best one so far in terms of recovery. She was sitting up cross legged in bed, off the vent, and in no pain just 4 hours after surgery! The willpower this child has never ceases to amaze me! If school was in session today, she could have gone back to school just 6 days post op. We stayed one night, but probably could have come home the same day. Since I don't like tempting fate, we stayed the night just to be sure all is well. She came home on my birthday, the 23rd. Can't think of a better birthday present! She has already had her post op dressing removed and had her first shower.

Kevin was also in the hospital during this time for a couple of days. He came home on the 22nd. He had an infection/abscess develop on his back and was admitted to a different hospital for cleaning/scraping of the wound and several days of IV antibiotics. Talk about being pulled in 2 different directions! He goes back to see the surgeon this week to see if additional work needs to be done on the abscess site.

Christmas was great to have everyone home and under one roof! I made a big dinner with a fresh, organic turkey and all the trimmings. A couple of friends joined us which was nice. I feel like my week finally caught up with me. I was very sleep deprived and I slept away most of the 26th & 27th. I would doze off in between Erinne calling me for assistance. Gotta get back on the productive end of things starting today.

Erinne is looking forward to seeing friends this week and trying out her new Christmas games/toys. If we're REALLY ambitious, we may even go out and spend the gift cards!

Thank you for all of your kind thoughts and prayers for her over the past week. It means a lot to us! 

We pray for a happy and healthy New Year and a cure for SMA!!

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Thursday, December 10, 2009

Next Surgery Scheduled

Erinne's 7th scoliosis surgery on her spine will be Dec 22 at Providence Park Novi. Her surgeon and I tossed around a couple of dates & while this is obviously very close to CHRISTmas, I have faith that the best 49th b-day present I will receive will be taking her home on my birthday, the 23rd. The last surgery she had like this last July 14th, we stayed just 30 hours after surgery. (She is one TOUGH cookie!) Erinne desperately needs this surgery ASAP; the rods in her back are really pulling on the vertebrae & causing her a great deal of pain ALL the time now. She requires a lot of narcotics just to get through the day. All prayers appreciated!!! I will be journaling on her website (below) during her surgery if you'd like to check in to see how she is doing. I hope to get in a couple of fun activities between Dec 18-21 so she will have had some good things to remember while she recovers at home after surgery. Hopefully we can arrange to have some of her friends visit at our house after Christmas. We had hoped to spend Christmas with my brother and his family in KY (I really need a "family" fix!), but that is not meant to be this Christmas, I guess. Please keep her in your prayers -- thanks!

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

November 28, 2009, Saturday

Happy Thanksgiving!

I have so much to be thankful for that I am STILL counting my blessings! :) We shared a nice day with friends. I don't do the "Black Friday" thing so we've pretty much kept a low profile this weekend. It seems strangely quiet around here without Erinne's Ozzie bird around. (Ozzie wasn't loud, but he was entertaining. Walked around the house like he was the alfa dog. Even with the cats on the floor, he's walk past them like, "Yeah, I'm baaaad. Uh uh. Don't mess with me!") Erinne's sinus infection from hell has returned again --- more like it never left. She was off antibiotics for 4 days and it came back with a vengeance. She's struggled with it most of the day today. I am hoping we can get ahead of it so she will be ready for school on Monday.

Other than that, it's the same ole same ole. A 3D (or 4D - I can't remember) head CT scan on Monday (30th) and a doctor appointment on the 5th coming up, waiting on a surgery date for her back (and possibly the sinus one too). Her back pain is increasing each day, usually indicating that the surgery is needed to release the tension on the rods and her vertebrae. And of course, the continued battle with the state over nursing care goes on. They sent the 4th RN out to assess Erinne, who also agreed that she met the criteria for home nursing care, and is recommending 12 hours of care a day. So get this -- now they are sending out someone from Lansing to see Erinne. Yep -- tax dollars at work! They wanted to come and see her in her school and home environments. I nixed the school environment idea. I was not going to have them disrupt the learning process at school. They were not going to stand in a corner and observe her, or talk to her teachers or follow her from class to class. That is just too disruptive and unnecessary. They aren't supplying a nurse for school so there is no good reason for them to be there. So the next visit from them is on the 15th. SIGH!! I am soooooo tired of this!

Well, guess I'll get back to getting Erinne's room decorated for Christmas. I've got the lights up, and some decals on the ceiling and now I need to get her tree up. She spends so much time in her bed that I've got to make sure she feels the Christmas spirit in there too! :) Then the wheelchair decorations are next!

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Monday, November 9, 2009

Back to a "Normal" Routine

Erinne returned to school today after being out for a month. She was welcomed back (literally) with open arms by her teachers and classmates. We'll see how effective her flu shots will be. She was VERY VERY happy to be back at school (despite not sleeping very well last night.)

Her happiness to be back at school has been overshadowed by the death of her beloved bird (a green cheeked conure), "Ozzie" this past weekend. I don't really know what happened. He was fine in the morning, playing with his toys and enjoying a Ritz cracker, but by evening he was acting sick and wanting me to hold him. That in and of itself was odd, because the bird didn't like me much. (I am the one who cut his nails and trimmed his flight feathers which makes me the boogie man.) I tried feeding him water through an eyedropper, but I could tell he was dying. I just held him on my chest all night and told him he was a good boy. By morning, he was gone. Erinne is just heartbroken. He was a very special pet to her - she received him as a 10th birthday present.

We're still following up with doctor appointments for a 3D CT scan of her head, getting a couple more teeth pulled to make room from braces, seeing the oral/facial reconstructive surgeon and seeing her orthopedic surgeon to this week to do xrays and set up her next surgery.

Still fighting with the state after 14 months to secure nursing care for Erinne. She's been approved for the state's waiver program, but we have been arguing about the need to have nursing services vs. a trained babysitter. And if you are familiar with Erinne's history, machines or complexity of her care, you know that nothing short of a nurse can do this. But that fight is about to come to a head because after about 100+ documents that have been submitted, I told them they were not getting another blooming piece of paper out of me. I called their bluff and told them to make a decision this week. I was done with the game they are playing. We'll see where this one goes.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Thursday, October 29, 2009

Follow Up On A Few Appointments.....

Just a little but of an update - Erinne had 3 teeth pulled today. They were baby teeth that refused to let Erinne grow up! The adult teeth had come in on top or alongside the baby teeth. Some of the baby teeth split in 2 or 3 pieces, and just stayed attached to the gums. Now next week we meet with the orthodontists and facial reconstruction surgeons to begin implementing the plan.

Erinne saw her wonderful pediatric neurologist, Dr. Dabrowski last week. (We just love Dr. D!) We discussed her chronic hip pain and decided to try injecting her hips with a steroid/lidocane mixture. (Well, it was kind of a 2-1 vote.) It hurt for about 24 hours, but she now says the hip pain is greatly decreased. So I think it was a good thing.

Erinne's sinus infection is still hanging on. She is starting her 3rd week of antibiotics. Next month she'll have a CT scan on her head to look at her sinuses and decide where we go from there.

Her next spinal (scoliosis) surgery is going to be scheduled for her Christmas break (I know -- lousy way to spend the break. But she can't miss any more school!) She is starting to have the back pain that she gets when it is time for the rods to be lengthened. (Yes, pain is an everyday constant in Erinne's life, unfortunately.) The dislocated tailbone pain is still absent -- so the tailbone injections in August must've hit the right spot!

I seem to have managed to acquire a bulging disc in my back this past weekend. I guess repeatedly picking up and carrying around 120 lb. child has caught up with me. It hurts about as much as my broken leg did. My left leg hurts too, and my foot feels all pins-and-needles. I am taking anti-inflammatories, using a heating pad and praying for the best. I still don't have insurance, so going to the doctor's is not an option right now.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Tuesday, October 27, 2009

HAPPY DANCE!!  HAPPY DANCE!!

YAY!!!!!  The H1N1 vaccine finally came in to the doctor's office this afternoon and we made a beeline there. They didn't get many vaccines, but they were holding one for Erinne. When I told Erinne the shot was in, she said, "HURRY!! LET'S GO!!" How many kids say that when it is time for a vaccine?? She wants to get back to school ASAP. Now to give her a little time to build up immunity -- return to school date Nov 9th.She's finally had both flu shots. Maybe I can breathe a sigh of relief now!

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Monday, October 26, 2009 

Sorry -- A little Slow On The Updates....

This is JUST CRAZY!!! I take Erinne out of school to [hopefully] limit her exposure to H1N1 (swine) flu, until she can get her vaccine.....and KEVIN ends up bringing home H1N1 on Monday!!! Then my friend Liz, who helps me out with Erinne & her school work, was here for 7 hours on Thursday, and then was diagnosed with H1N1 on Friday!!! Needless to say, Kevin is wearing a mask whenever he comes out of his room and I am bleaching, Lysoling and sanitizing EVERYTHING. All 3 of us are on Tamiflu, and other than that......PRAY!!!!

We are STILL waiting for the H1N1 vaccine to get to Erinne's doctor's office. She can't go back to school until 2 weeks after she gets the vaccine. :( The health dept had it over the weekend and I heard that [high risk] people were lining up the night BEFORE just to get the vaccine! I wouldn't subject Erinne to that environment (waaaay too many people in a contained area) so we will just have to sit and wait. Maybe tomorrow..... (I keep telling myself that each day....)

I've had a bit of a problem with my back the past couple of days. I think I have a disc that is bulging a bit, and have had some tingling and pins/needles in my left leg. (I think it was just a weird lift with Erinne.)

Never a dull moment around here, that's for sure.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Wednesday, October 14, 2009

IT'S TOO EARLY FOR THIS STUFF!!

Erinne is on Day #18 of this bug -- mostly in her sinuses. No improvement, despite several different treatments. Tests now point to a sinus that has sealed itself shut. 30 days on mega doses of antibiotics and then a CT scan to determine if the sinus is still sealed. If yes, then surgery to drill in there to create an open pathway for the sinus to drain. Lovely. But now since she is 'compromised' and therefore at risk, and b/c H1N1 is hitting here so hard, her doctor doesn't want her exposed to the rising number of sick kids coming to school. She is not vaccinated yet, b/c we don't have the H1N1 available here. So her doctor wants her to stay home until we can get her vaccinated. As many of you have already heard, H1N1 is VERY difficult for an SMA child to fight off -- especially one with the medical history that Erinne has had. This is not the news we were hoping to hear today. We take all the precautions while we are out in public (N95 mask, antibacterial wipes, hand sanitizer), but she just can't wear that mask all day at school. This is just crazy.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Thursday, October 1, 2009

Lovely Cold and Flu Season

Erinne was hit by a nasty bug last weekend. I was worried it was pneumonia, but a trip to the doctor's office brought up the good news that it wasn't. Erinne had/has a severe sinus infection that irritated her sinuses to the point that the sinuses were oozing blood and dripping down the back of her throat and into her lungs. That created many problems, as you might have guessed. She also had/has a bad ear infection. She is on day 2 of her antibiotics and is still struggling.  We're having a hard time getting the forehead sinus to open up and drain. She wakes up many times during the night, needing to cough. ~~~~ I am very worried about the swine flu and her exposure to it this fall/winter --- especially with her extensive history of pneumonia (19 times).  It's going to be a looooong winter. She'll be wearing a mask to school at some point. Except for Red Wing hockey (starting tomorrow!), we hate this time of year!!!

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Tuesday, September 15, 2009

 
Erinne In The News!!
 
In case you missed the link at the bottom of the front page (above the song/below the last of the pictures) here is the link to the DETROIT NEWS story on Erinne's wish/dream for an accessible home! The local ABC/Channel 7 station had a quick piece on the noon news, which I missed!
Link:
 
Our WONDERFUL township supervisor, Phil LaJoy, has taken Erinne's tremendous need to heart and is doing everything possible to get ABC/Extreme Makeover:Home Edition to take notice of our nomination.
 
I'd like to ask you to PLEASE pass the link to the news story on, or the link to Erinne's website on to AS MANY people in Michigan as you possibly can. The more people in Michigan that are aware of this, and most importantly, WANT TO HELP in some way, to make this dream a reality, please ask them to forward an e-mail to Phil LaJoy at phil.lajoy@canton-mi.org or call his office at 734-394-5185.
 
It takes a village to raise a child.........and I sure hope you'll be a part of that village!
 
Thank you from the bottom of my heart, and Erinne's heart.
 
XOXOXOX
 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Saturday, September 12, 2009

 
Survived The First Week Of 7th Grade!
 
Only a 3 1/2 day week, but it sure seemed twice that long! Erinne is happy to be back to school. I met all of her teachers at the open house and she has GREAT teachers! We are so blessed to be part of the Plymouth-Canton Community Schools, and at East Middle School in particular. It is good to be back in a routine, but it is sure kicking our behinds! Erinne is asleep between 8:30-9:00p each night. It has tired her out, for sure. The nerve block on her tailbone is still working, so she is making it through the day in her wheelchair. I come up to school during her 4th hour each to help her nurse bathroom her and I check her skin for any signs of a breakdown/pressure sore starting. So far so good!
 
We also had a wonderful meeting with the Supervisor, Treasure, Clerk and Assistant of Canton Township this week. They care a great deal about Erinne, her safety and well-being. Again, we are so blessed! I hope there will be more news on this down the road. But for now, we'll leave it at that!
 
We were so very happy that the University of Michigan Football team and their freshman quarterback Tate Forcier beat Notre Dame today (which they were predicted to lose) and can't wait for the Detroit Red Wings to open Training Camp tomorrow!!! We love fall! A great day in Michigan!
 
Erinne also saw the orthodontists at the University of Michigan Dental School this week and will be starting some pretty extensive orthodontic work next month. I guess that makes her a good teaching case -- as she has been so many times!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Saturday, September 5, 2009

 
Chicago, We'll Be Back!!
 
The weather was perfect. The city was incredibly accessible - especially the transportation. It wasn't too crowded. The Amtrak train (other than being late) was a wonderful way to travel! All in all, a GREAT time! Erinne loved going out on the SkyDeck Ledge (!) up in the Sears Tower. (Latte, however, thought that was an incredibly insane idea and dug her nails into what appeared to be the ledge of the building and refused to step off into the universe!) Erinne also liked visiting the Shedd Aquarium, especially seeing the Green Sawtooth Shark! She enjoyed watching the diver hand-feed the fish and the moray eel in the Caribbean Reef. The rays were like little puppies, clamouring for treats from the diver. Cute! We learned that most of these fish liked fresh peas as a snack! The belugas were a favorite too! Erinne also visited the Museum of Science & Industry and loved the Harry Potter Exhibit! We definitely will be back for a visit, and hopefully with best friend Olivia next time!
 
One mishap....we got home late Thursday night, about 12:30am. Erinne was exhausted and in pain. I lifted Erinne out of her wheelchair to carry her to her down the hall to her bedroom, & my bum ankle gave out on me. I lost my balance, almost dropped her, and I went head first into the china cabinet with her in my arms. I was trying to protect her head with my right elbow and filleted the skin off my elbow as it scraped along the wall, prior to my head hitting the china cabinet. I was not able to throw my momentum backwards so we could land on my back. At least the cabinet stopped me from falling on top of her. But I did sprain her wrist. It definitely popped. She was hurtin' big time, and in tears. She is able to move it and it isn't swollen, but it still hurts. I think she'll be okay. My ankle, on the other hand/foot, is a mess. I hope I didn't pop some of the hardware loose when the ankle went out and rolled. 48 hours later it is still very painful, swollen and is unstable when I pick her up and carry her. Going back to the surgeon isn't an option, because I no longer have health insurance. I just hope and pray it manages to heal on its own.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tuesday, September 1, 2009

In Chicago!

Made it to Chicago. Train was almost 3 hours delayed! We coulda slept in! Erinne has been power napping since we arrived at our hotel. I'm more than ready for dinner! I guess we'll wait to start sight-seeing tomorrow! First up -- the Aquarium!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Monday, August 31, 2009 (Happy 45th birthday yesterday to my little brother, Gregg!)

 
Off On An Adventure!
 
We are trying to salvage a little bit of Erinne's summer, so we are taking the Amtrak train to Chicago and staying for 3 days. We are going to see the newly expanded Shedd Aquarium, the Nike Store (forget that American Girl stuff!), the Science Museum, Sears Tower (now called the Willis Building) and the Planetarium. Gotta do something to forget about 2 surgeries, 1 pneumonia and 2 hospitalizations that took up almost all of her summer!
 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Friday, August 28, 2009
 
What Could We Do With A $333 Million Jackpot?
 
We've bought our tickets. Now its time to dream!
 
First, all Glory Be To God and we would tithe to Him in Thanksgiving for our Blessings.
 
We would donate money to the scientists who are urgently working towards finding a cure for SMA. We would donate to SMASupport, who have helped us and so many others out in countless ways. I would buy a wheelchair accessible van for Erinne to travel in. I would build a wheelchair accessible house for her to grow up in, and include an accessible suite to have plenty of space for other SMA families and friends to come and visit us. I would put money aside for Erinne to attend the University of Michigan, and then Michigan State University Veterinary School (her dream career, to become a Vet). I would figure out how to make a new Ford Mustang accessible for her to drive (also her dream). I would pay for my older 2 children to attend college and start to become the successful, productive adults I know they can be. I am a single Mom and have always had to work - it's not been a choice to stay home with my daughter. I would invest the money so that I could spend the rest of my time with my daughter, instead of working. We would be able to do more volunteer work in the hospitals, and with newly diagnosed SMA families. I would donate to the organization that gave us her service dog, CanineAssistants.com. I would donate to Make-A-Wish, since they granted her a fantastic wish in 2001. I would "pay it forward" to all of the groups and organizations who have helped us out in the past. I would set up some sort of SMA Foundation in Erinne's honor, so that her legacy would live on long after she is gone. There are so many local families dealing with SMA and their needs are great too. The foundation could help them as well. Erinne has always wished she could have taken a vacation and gone on a cruise, so we would do that, and take other SMA families with us, so those children could enjoy the experience along with Erinne. We would fly to Kentucky every month to see my wonderful brother, Gregg, my terrific s-i-l, Jodi and my dear niece & nephew, Rachel & Noah. We miss them so much! Erinne would want to make a difference in the lives of local unwanted animals, so we would definitely help out the local Humane Society & other shelters.

 

Ahhh, dreams!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thursday, August 27, 2009

Thank You, God, For Our Blessings!

Erinne's procedure to do a nerve block on her coccyx went very well. It took quite a bit of Versed, Fentanyl and Propofol to 'lightly' sedate her! Geez! The good news is she is pain free for the first time in ...... I don't know - a very long time! Now the wait and see begins -- how long will it last? For some people it is permanent, others months or just weeks. I'm praying for the longest time possible. We met some new pre & post op recovery room folks today, and saw others who remember Erinne from last month. Erinne passed out her wristbands, and Latte went 'belly up' as she made new friends!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wednesday, August 26, 2009
 
Prayers For Tomorrow, Please
 
Erinne is going into the hospital tomorrow to have a nerve block done on her coccyx/tailbone. Please pray that this will provide her with the pain relief she so desperately needs. If this doesn't work, then we are looking at a coccyx removal down the road.... but I hope not.
 
She picked up her schedule at school today and saw a few old friends.  She is excited about her classes and her new teachers, and can't wait for Sept. 8th to get here!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thursday, August 20, 2009

P*A*I*N* !!

This tailbone/coccyx pain of Erinne's has gone from chronic to acute. (It is from a 2+ year old old fracture of her tailbone which is now dislocated.) She is having more and more difficulty sitting in her wheelchair and is waking up at night now needing strong pain meds (meds around the clock). We were at the Detroit Tiger's game today with a bunch of SMA families and before the game even started Erinne's pain went into overdrive. We had to leave after just a couple of innings. The drive home was very hard on her. She is going back to see the orthopedic surgeon on Monday to figure out what we are going to do. She'll never be able to make school with the pain she is having now.

The good news I alluded to below is that a reporter from the Detroit News came by on Monday to do a story on Erinne. It was supposed to be published Tuesday but it was bumped. I don't want to disclose too much of the story until you have a chance to read it yourself! I'll post a note as soon as it is published. A link will be listed in red on the first page of this website.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Saturday, August 15, 2009

 
Better!
 
Fortunately, the 'bug' was of the 24-hour variety and she is feeling a whole lot better! Although for some reason, she has had the hiccups for 2 days. Go figure! She was very antsy to get to hockey practice today. She played a solid 2 hours before her wheelchair batteries overheated (it is always something, isn't it?) and she played with a smile on her face. She lives for hockey! She didn't make it to baseball because I thought that would be pushing it, especially with the heat. She came home, rested a bit, stretched out her back and now is out playing pool/billiards with her dad. GREAT things are happening on Monday! I'll fill you in then!
 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Friday, August 14, 2009

 
Blech!
 
Erinne does not feel good. She started to feel sick after we went to the movies (G-Force) yesterday. Constant nausea, achy & general malaise. She refuses all food and won't get out of bed. (Thank goodness for the feeding tube -- I am able to keep her hydrated at least.) She has hockey practice and a baseball game tomorrow too -- a perfect day for her!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Monday, August 10, 2009

 
The Heartfelt Dreams of a Little Girl...
 
Erinne has many hopes and dreams for her future. Erinne adores animals. Many of you know of the mini-zoo we have here at home. Besides Latte, her service dog, we also have 2 cats that we adopted from the Humane Society, a white, blue-eyed dwarf bunny, a green-cheeked conure (small parrot) and a teddy-bear hamster. And she is always looking to adopt more (uh...no!) Anyway, Erinne plans to attend The University of Michigan for her undergrad work and then attend Michigan State University Veterinary School, and, of course, become a vet.
 
And, she also plans to drive a Mustang convertible some day. She wants it to be maize and blue (U of M's school colors) with a big block M on the side, and a custom paint job of flames along the back and sides.
 
She fully believes she will drive it -- someday.
 
She'd like to believe that SMA will be cured someday, too.
 
Such big dreams for a wonderful little girl....God Bless her.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tuesday, August 4, 2009

 
Erinne's Huge Heart
 
We recently have added to our circle of friends a family from the upper peninsula of Mich (9.5 hours from here) who found their way down to Erinne's magnificent surgeon, Dr. Mendelow. (Can you imagine driving 9.5 hours to find the best doctor to care for your child?) Their 8 year old daughter has a condition (non-muscular dystrophy) that has required some 20+ surgeries. They drove down to here to have 3 surgeries in 3 weeks on her spine. This young girl's road has been very tough. Yesterday was day #20 and the little girl has reached the end of her rope. She started crying while Erinne was there. Erinne rolled up alongside her bed, reached up her hand between the rails and said, "It's okay -- hold my hand. I know how you feel. But you have to listen to doctors and do what they ask. Then you'll get better and can go home." The little girl continued crying, but held on to Erinne's hand. Erinne then turned on her IPOD, and put on the Jonas Brother's song, "Hold On." (Erinne's new friend loves the JoBros and last week we brought her a poster of them to brighten her hospital room). The little girl slowly stopped crying, and began singing along with with the song.
 
I just sat there......taking it all in.
 
Wow.
 
The empathy my daughter has for others just blows me away.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Saturday, July 25, 2009
 

A Great Day For Baseball!
 
Erinne really enjoyed getting back to her baseball team today. They won their first game! Erinne scored and sacrificed a ball. We had beautiful, sunny weather. Erinne was a little warm in her catcher's gear. A mom said to me, "Isn't she afraid of getting hit by a pitch?" I replied, "No....she plays hockey too." Nuff said! We visited 2 new friends in the hospital yesterday. They had surgery this week and have the same surgeon as Erinne. Both families were a bit nervous and I think they found it helpful to talk to us. (We met one family a week before surgery and talked on the phone with the other family.) Erinne does such a good job at this. She is so compassionate and empathetic. We were going to go back to the hospital to visit again today, but after her baseball game, we came home and she stretched out on the bed....and fell asleep for 3 hours. We'll head up to the hospital to visit tomorrow.
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wednesday, July 22, 2009

 
UNLUCKY!
 
As Erinne's friend Olivia says, [despite her very Irish name] "You sure don't have the luck of the Irish!!!" It just wasn't Erinne's day yesterday. First, her specialized hospital mattress broke -- and the mattress isn't usable once it breaks. Then, as she was sitting on the couch, a folding card table collapsed and came down HARD on her ankle. She was in so much pain, there was no sound coming out of her mouth as she was crying. She said she was "Soooo done" and went to sleep on the couch. The replacement mattress was delivered about 8:30pm and I carried her to her bed later.
 
But she sure is tough as nails! (As if we didn't know!) She woke up this morning, determined to just "deal with it." And deal with it she did!
 
Today is kind of a milestone day for her. She is at the movies, seeing Harry Potter, and for the first time, WITHOUT an adult with her!! She is with 2 mature, responsible friends with her (one going into 8th grade and one going into 9th grade) and all 3 girls have cell phones. I bought her snacks and got her (and Latte) settled in the theater, and left. I am only a mile away from them. It's tough to let her go, but I have to let her have whatever small bit of independence we can muster.
 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Sunday, July 19, 2009

 
Recovery Continues On The Right Path.....
 
Erinne is my little Energizer Bunny! She just keeps going and going and going......! She is DETERMINED to get back to 'normal'. Today she was up in her wheelchair for 5 hours (after having a very rough morning). She invited 2 friends over and they did a 'normal' kid thing and walked up to the corner party store to buy snacks. (Yep -- as hard as it is, gotta let her out of my sight for a few minutes and be a normal 12 year old once and a while!)  She also drove around outside for a while and saw a little bit of the Navy's Blue Angels during some of the air show (about 15 min from here.)
 
She has a couple of doctor's appointments this week. Hope the Michigan potholes don't do her back in! (We have such lovely roads!)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thursday, July 16, 2009

 
All Is Well!
 
Sorry for the lack of a prompt post op update. My wireless on the laptop was not working in the hospital. ERINNE IS GREAT!! Her surgery on Tuesday went very well. Her surgeon's only concern was that her growth plates (in the bone -- it gives you  clue as to when growth will be slowing down/stopping) are showing no signs of closing --- meaning that she still has a lot of growing to do! Yikes! She was 5'8" before this surgery (at age 12) ....wonder where we'll end up?
 
We had a little bit of an issue with her right lower lobe (lung) post op. It collapsed and we worked very hard to bring it back up. Pain management was a big issue during the night Wednesday. She got enough morphine to put a horse to sleep ---- and yet, she wasn't even able to sleep! Finally had to break out the Dilaudid before she could finally get enough pain relief to sleep.
 
She was discharged Wednesday evening and was very anxious to get home and get into her own bed. She is very uncomfortable, and usually in pain if she has to sleep in any bed other than her own. When I laid her into her own bed when we got home, there was this HUGE sigh of relief from her body.
 
Today Erinne continues to head in the right direction. She has taken it easy all day and stayed in bed watching movies. We have some special plans tomorrow, if she is up to it. More on that tomorrow!
 
We'd like to send out a big thank you to all of the wonderful staff at the new Providence Park Hospital. We love the hospital and especially all of the wonderful people who took time to get to know Erinne. And as always, we sure do love our Dr. Mendelow!
 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Friday, July 10, 2009

 
THANK YOU, Detroit Tigers!!!
 
We had such a WONDERFUL evening out at the Tiger's fundraiser last night! Erinne very much needed that time out and an opportunity to forget about her pain and the looming surgery on Tuesday. She had an opportunity to drive all over the field, 'run' the bases visit with many of the Tigers including Brandon Inge, Jeremy Bonderman, Justin Verlander and Skipper (manager) Jim Leyland among others. We are sooo appreciative of the time they spent with Erinne and their generous donations of of the tickets which allowed us to attend this wonderful event. The food was delicious and Erinne enjoyed zipping about the exclusive Tiger Club. Latte enjoyed herself too, and threw herself at Brandon Inge's feet! :) (That little hussy!) She definitely picked out which players were 'dog people.' We had a little talk before venturing out on the sacred grass of the Park -- there would be no descration of the field by any doggie behaviors! (Seriously, though, that is not a problem we have ever had with her.) I took Erinne's sandals off and rubbed her feet on the grass -- just perfect grass! Thank you too to Katrina Hancock, sportscaster WDIV/NBC for the time she spent with Erinne and for wearing Erinne's wristband on the news broadcast last night. :)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thursday, July 9, 2009

 
A Change Of Plans
 
Erinne's 6th spinal surgery, which was scheduled for July 30th, has been moved up to next Tues. July 14th, if she gets a clean bill of health check up tomorrow with her pediatrician, & a clear xray, from her pneumonia last month. The surgeon will be out of town the evening & weekend after her (formerly) scheduled surgery on the 30th & he does not want to be gone, in the event that she develops any problems. Hence, the date change. He's a VERY caring, wonderful doctor! (We love you, Dr. Mendelow!)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sunday, July 5, 2009

 
All's Quiet On The Western (Canton) Front...
 
Things are still motoring along.....Erinne is healthy and quite possibly over her pneumonia. I can't hear anything unusual in her right lung, which is good. Just waiting now for the official MD okay on 7/20. We spent a low key 4th of July weekend, mostly because her back pain keeps her from spending long periods out and about in her chair. We did manage to see Pixar's "UP" together. Very cute! We agreed that the young boy in it reminds us of Erinne's cousin Noah! We went out for dinner a few times over the weekend too.
 
On Thursday, we are attending a special fundraiser evening hosted by the Detroit Tigers. It will be at Comerica Park (where they play). They have invited as special guests several families whose children are patients of either Mott's Children's Hospital in Ann Arbor or Children's Hospital of Detroit -- and we are very fortunate to be one of those families!! There will be a strolling dinner, auction, a tour of the clubhouse, a chance for Erinne to "run" the bases, and of course, meeting lots of Tigers!! We are sooo excited (all except for Erinne and the wearing the dress part!)
 
Oh ---- by the way....
Erinne's email address is Erinne.Williams@gmail.com

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Monday, June 29, 2009

 
Still Plugging Along.....
 
Not much has changed, which is good, in a way. Erinne feels better, but doesn't have her full strength back yet. There is still some 'junk' (that's a technical, medical term!) deep in her right lung that is a bugger to get out. But we've got to get it up and out before surgery (July 30). She is having A LOT of back pain.....she's able to sit in her wheelchair for only an hour or so, before the back pain drives her back into bed. It's going to be a loooong month, waiting.
 
She is bored out of her mind because her activities have been so limited (first by the pneumonia and now, by pain.) We started to do a little review of reading and school stuff, to keep her skills up. She has informed me that she is on SUMMER BREAK -- which doesn't include school work. SIGH!!  Yep....it's gonna be a loooong month -- for both of us!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

June 24, 2009

 
Doing Better & Happy 18th Birthday Kevin !!
 
Erinne went back to the lung doctor today for a check-in. Her left lung is almost normal. Her right lung (the smaller lung & the one compressed by her scoliosis) needs a lot of work yet. We'll continue with the aggressive treatments we are doing to try and clean that lung out. She will have an x-ray on July 20th to see if it is clear enough for suirgery on July 30th. She is getting her spunk back...stamina not quite there yet (but she sooo wants to get back out and about).
 
I'd like to wish my wonderful son Kevin a very Happy 18th Birthday!! 

We love you so much Bud, and miss you even more. 

Have fun! XOXOX

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Saturday, June 20, 2009

On The Right Track!

The 5th antibiotic turned out to be very tough on her system and caused a lot of vomiting and diarrhea and a few setbacks. But now she's on a different one that she is tolerating better.
 
She's at a point where I think I can take it from here and continue the recovery at home. So we will try it again! She is VERY happy to be sleeping in her own bed. All of her animals had to be brought to her bed before she went down for a nap to get lots of hugs and kisses and, "Did you miss me?" Latte is very happy to be home too with all of her 'babies' (stuffed animals).
 
I got a call that MDA camp (which starts tomorrow) has been canceled due to flu concerns. She was happy to hear that she won't be missing out on all of the fun by staying home and recovering. I'll worry a little less now too.

Thank you for your prayers & concern.

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Thursday, June 18, 2009

Doing better....

Well, 5 (different) antibiotics later, Erinne has turned the corner. She is out of the ICU and on the pediatric stable vent unit floor. She is not needing oxygen and is coming off the vent for a couple of hours at a stretch.

She still has a lot of crud in her lungs and a ways to go till she is back in the saddle again. Surgery has been postponed indefinitely. But, I think I see a light at the end of the tunnel, finally.

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Wednesday, June 17, 2009

 
In the ICU
 
Since we were not gaining any ground and showing any sort of improvement, I took her in the ER again. Unfortunately, the pneumonia has spread to both lungs. She is now in isolation in the PICU (Pediatric ICU) at Mott's Hospital, Ann Arbor, MI, until we figure out what bug(s) she has. This is the sickest she's been since the 101 day hospital stay in 2001. Please keep her in your prayers!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Monday, June 15, 2009

 
No Improvements
 
Erinne really isn't any better. She is now on 5 liters of oxygen and on the ventilator almost all of the time, except to use the cough machine (which is every 5-10 mins or so). About 1/3 of the time, she is coughing up some blood. I have been in touch with her doctor and we are watching and waiting for her meds to kick in SOON. This is one tough pneumonia.
 
Please keep her in your prayers.
 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Saturday, June 13, 2009

 
Pneumonia ---- In June??!!
 
Yes, as unbelievable as it may seem, Erinne has pneumonia, in June! I could tell that she was dehydrated when I brought her home yesterday, and I could not get get her caught back up. Her lungs were/are very sticky. No matter how many breathing treatments I did, or how many fluids I pushed, I just couldn't get caught up. I spoke with Erinne's wonderful pediatrician this afternoon and we decided she needed to be seen in the ER. Her chest x-ray looked terrible. They pumped her full of IV fluids, started 2 IV antibiotics and steroids, and she started to look a little better. The pulmonologist on call wanted her admitted, but I felt like she'd be better off at home (and away from all of the flu that has filled the hospital!). If she gets worse, I'll take her back in to be admitted, but I think I can handle her at home right now. She'll start 2 different antibiotics and more steroids tomorrow (she already got today's doses at the hospital), and we'll continue with 3 nebulizer (inhaled) medicines so hopefully we can start getting her lungs cleared out. She hasn't been sick in almost 18 months and now she gets pneumonia. Geez.....and this is June??!!
 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Friday, June 12, 2009

Back From Camp #1
 
I picked up Erinne this afternoon from Vent Camp, and she is sick. They told me at pick up she had a lot of congestion through the week (thank goodness I sent all of her meds that we haven't used in eons.) She got sicker on the drive home. She had trouble breathing. She was gurgling so bad with each breath she sounded like she was drowning. At one point I had to stop and plug her cough machine at a gas station to clear all the junk in her chest. We are doing lots of breathing treatments and chest percussion (beating on her chest to loosen secretions/mucus). I haven't had to do this in years with her. She is also staying on her vent when she is awake because it is too hard for her to breathe on her own. I think it is the start of pneumonia (no temp tho, but she doesn't always run one with pneumonia.) I am hoping to hold off until the morning to call her doctor, and not have to make a midnight run to the ER. Please say a prayer that she hangs in there through the night. No baseball game tomorrow for her. And our beloved Red Wings lost in the Stanley Cup finals tonight, so it is a sad sad day all the way around. :(

 

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Sunday, June 7, 2009

 
Off To Camp!
 
I dropped Erinne off at Vent Camp this evening ..a little late. We went out to dinner at Olive Garden Saturday night and Erinne & I got food poisoning. So we had to wait to leave until after we both could stay out of the bathroom! Argh!
 
But she got there eventually, and zoomed right off after arrival, leaving me to set her stuff up. Latte took off too, to romp with her camp doggie friends. (Latte is on vacation and officially off duty the whole week.)
 
It is awfully quiet here at home...no machines whooshing through the night....no Latte protecting the house. Eerily quiet. I don't like it much.
 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Thursday, May 29, 2009

 
The WONDERFUL Dr. Mary Schroth!
 
Our drive to Madison, Wisconsin was a L-O-N-G one, but sooooo worth the trip! Dr. Schroth was just wonderful, as I knew she would be! She spent 3 hours with us -- how many doctors devote that kind of time to a patient? It was so reassuring to be able to be "just" Erinne's Mom, and not Erinne's Advocate. Dr. Schroth gave us her gold stamp of approval on what we have in place for Erinne's pulmonary (lung) regime. (She is one of the first doctors to utilize the ventilator the way we use it with Erinne. I have learned a lot from her work.) Dr. Schroth is a gift to the SMA community. We all have so much faith in her. She downplayed her role, saying, "You (parents) have taught me more than I have taught you." I told her that she is up on a pedestal in the SMA community -- we just love her. We know she loves our kids and ALWAYS has our kids' best interest at heart. It is hard to find medical people that can be trusted with our special kids. I can count them all and not use all of my fingers. Erinne and I have been blessed by having a few of the Very Best as Erinne's personal doctors.
 
A trip and time well spent!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Saturday, May 23, 2009
 
GREAT Day!!
 
Erinne had a fun day with her dad. They went to a guitar store to have her guitar restrung, and to look at electric guitars. I think she may be using her birthday money to purchase an electric guitar and amplifier. It was her first time in the store and she had a blast! Then they saw the new pixar's Monster movie (Monsters vs. Aliens, I think). I met up with them for dinner at Logan's Roadhouse in Canton. The food was TERRIFIC!! We met some wonderful, wonderful people who worked there (Hi Guys! We'll be back soon!!) and who showed a great deal of interest in Erinne. She passed out her wristbands to everyone who asked for one -- I think we ran out after 15 wristbands. (We'll be back with more, John - promise!) We appreciated everyone's concern, and are thrilled that you want to help Erinne. THANK YOU!!!
 
We head out on Monday for our trip to Wisconsin to see the SMA Specialist in Madison, WI. We have appointments on Tuesday, and we will drive home on Wednesday, after a stop at Chicago's Shedd Aquarium.
 
More news soon!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Sunday, May 17, 2009

HAPPY 12th BIRTHDAY MISS ERINNE ROSE!!!!!!
 
Thank You, God, for the gift of another year with my Angel-on-Loan!
 
Erinne had a busy, busy day. After a lunch at one of her favorite restaurants of ribs and cottage fries and a return home to stretch out her back (a frequent occurrence, because of of her growth and need for spine surgery for her scoliosis, scheduled for 7/2/09), we headed downtown to watch the Detroit Tigers beat the Oakland A's 9-1, followed by a cool fireworks show. By the time she got to bed, it was midnight and she was beyond tired and in pain. She'll spend Sunday recovering and resting and preparing for school on Monday. She will have her friends bowling party on the 30th, after we get back from our Wisconsin trip next week to see the SMA specialist. Thanks for the birthday wishes!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Monday, May 11, 2009

 
Tough Times....
 
I keep opening up Erinne's journal and see that it's been 12 days since I've written.....and I want to share some thoughts, ask for prayers....but I can't. I can't find the words. And some things can't be posted for all the world to read...because a couple of people reading here are evil by nature and have only ill intentions and would want to use those thoughts and words against me. So I can't share what is really on my heart. In the meantime, I'll just ask you to please keep the kids in your prayers and ask God to open up a window or two, since a couple of doors have closed, and I am lost.
 
Kevin has had a good check up and is well on the road to mending, although hockey is off the radar for the rest of the season.
 
Erinne is well, and is very much looking forward to celebrating her 12th birthday, which is on Saturday. Her friend party (which is always a fun, fun time) is on May 30th -- the first date we could fit it in!
 
Thanks for the prayers and kind thoughts......sorry I can't be more specific.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

 

Wednesday April 29, 2009
 
Prayers For Erinne's Big Brother Kevin
 
I'd like to ask for your thoughts and prayers for Erinne's big brother, Kevin. He was playing hockey last night and was checked very hard from behind into the boards. He has a fractured vertebrae (L-1) and an active bleed on his right adrenal gland (which sits on top of his right kidney.) He is in the hospital and we are in a "wait and see" mode, to determine what the next step will be. Thanks.

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Friday, April 24, 2009

 
Better Late Than Never Update!
 
I am sorry to keep you hanging, waiting to find out about Erinne's SMA specialist appointment this week, and about our weekend retreat with the other SMA families. I picked up a virus while we were down in KY and it has been kicking my behind. I am trying very hard to keep it away from Erinne.
 
Our trip to Wisc. to see the SMA specialist was canceled because the doctor had a death in the family. Our appt. with her was moved to the day after Memorial Day -- May 26th.
 
Our Retreat Weekend was a BLAST! We got to see a lot of old friends and met some new families as well. The facilities were beautiful and very accessible. We took my brother's 2 children with us and that allowed my bro and sis-in-law a grown up weekend. (They live in Louisville and the retreat was 2 hours S.E. of Louisville) It was good for my niece and nephew to be around differently-abled children, and also for Erinne & I to spend time with them too. Erinne enjoyed20all of the arts and crafts activities they offered, as well as a beautiful indoor accessible swimming pool and a bowling alley. She also visited with the horses in the stable (but didn't ride them because it hurts her back too much to sit on the saddle). One of the horses took a great interest in her wheelchair and all of the flowers adorning it. In fact, he "sampled" a few of the flowers down by her toes (and also nibbled on the toes!) but found them a little too plastic-y for his tastes! (And Erinne immediately asked for shoes after the toe tasting!)
 
Thanks for checking in!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Sunday, April 12, 2009

 
Many Easter Blessings To All Of Erinne's Friends and Journal Followers!
 
Erinne is doing well and happy to be on Easter break ... and at the same time, bored already because her schedule isn't jam-packed! The daytime sleepiness seems to have resolved since I stopped her SMA study medication, Depakote. But at the same time, I am seeing more swallowing and choking issues, which is scary. I don't know if the two are related. On Monday, her BFF Olivia will be coming over for a visit. On Tuesday, we have 3 doctor appointments out at U of Mich, one of which will be to check her swallow via fluoroscopy. On Wednesday, her friends Jessie & Melissa will be coming over to spend the night. And then early on Friday, we are driving down to Kentucky to pick up her cousins, Rachel & Noah, and head to an SMA Family Retreat weekend at the Center for Courageous Kids. There we will be hooking up with a lot of SMA families we have met over the years. It's a long drive, but so worth it. My friend Liz will also be coming with us which will help a lot on the drive there, especially if Erinne starts to have problems (which she frequently does on trips in the car). We'll be back on Sunday, unpack, do laundry and then leave again early on Monday to see the SMA Specialist/Pulmonologist at the University of Wisconsin-Madison, Dr. Mary Schroth. We have a couple of appts there on Tuesday, and then we'll drive back on Wednesday. Erinne will head back to school on Thursday. I'll post after our doctor appts and let you know what is news.

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

March 31, 2009 Wednesday

 
Thank Goodness For Insurance!!
 
The diagnosis is in on Erinne's wheelchair......let's see if I can remember everything that is needing to be replaced: 2 new motors, 2 new batteries, 4 springs/coils, 2 brakes, 2 drive wheels, 4 casters/wheels, one leg rest motor ..... seems like I am forgetting something! They were able to secure the chair back to the base. Two of the 4 bolts that anchor the chair sheared off and had to be replaced. The chair is now stable again, and the features that were not working -- tilt, recline and speed -- have been restored. Erinne came home from school early today because she was in too much pain to continue to sit in the other wheelchair. She is anxious to try her chair out again tomorrow. She has a BIG hockey game (her playoffs) coming up this Saturday at 1:30pm (in case you can stop by and cheer her on!) I don't have any idea when all of these parts will be in.....hopefully before school is out!! (only slightly kidding!)

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Wednesday, March 25, 2009

 
NOT GOOD!
 
I got Erinne's wheelchair looked at today and they said the prognosis is that the chair needs major surgery. And it'll be sometime next week before they can get it all apart and figure out exactly what is wrong.
 
I have to go back and pick it up tomorrow so at least she can have her chair for the weekend. The manual chair we borrowed did not work well for Erinne. It does not have a head rest and Erinne cannot hold up her head without support all day. The lack of support in this chair also hurt her back. I had to pick her up from school early because she was in a lot of pain. We just have to hope and pray that the chair does not dump her on the ground at some point!
 
You know, it is not like we can go and 'rent' a power chair like you do when your car is in the shop and you need a loaner. It is a MAJOR lifestyle inconvenience/quality of life issue by not having a working power chair. And you can't exactly stay home from school because your power chair is broken!
 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Tuesday, March 24, 2009

 
R-E-L-I-E-F !!!
 
The news was good! Dr. Mendelow, her orthopedic surgeon, checked Erinne out and the x-rays showed no defects/cracks/misalignment of the hardware. We were sure happy to get that good news! The pain must be from her scar itself. The pain has not resolved as of yet. Erinne is tentatively set for her next surgery on July 2, 2009.
 
We've got a pretty major problem with her wheelchair. The seat seem to have come loose from the base, and right now it is a 400lb rocking/swaying chair. NOT GOOD! I'm worried that she is going to be pitched face first flat on the concrete in front of her! I have to drive up to her school and put her in a small manual chair that our good friend Phyllis from Dr Soler's office is letting us borrow while I drive the power chair back to the van and up to Madison Hgts -- about 40 min. from here -- and have them look at it and hopefully fix it! I can't seem to get a straight answer on when the tires and other assorted parts will be in for her chair. I hope to be able to pin someone down on that while I am there tomorrow.

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Sunday, March 22, 2009

 
A Little Bit Concerned
 
Erinne started complaining several times today of a shooting-type pain running down along her spine. She felt it both sitting in her chair (where it was worse) and also when I laid her down in her bed. She described it as feeling like her blood was "heating up". So we will be missing school tomorrow to go and see her orthopedic surgeon. I don't want her jostled around on the school bus until I know that her spinal cord is okay and none of the hardware in her back has shifted. Prayers and positive thoughts always appreciated! 
 

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Friday, March 13th, 2009

No, We Haven't Disappeared Off The Face Of The Earth...
 
Life has just been veeery busy ---- lots of doctor appointments and testing for Erinne. We're really not any closer to finding out what is causing her excessive sleepiness, but things are being eliminated. We will be heading to Wisconsin for an appointment with the SMA Pulmonary Expert, Dr Mary Schroth. We are soo looking forward to seeing her!
 
Erinne saw her favorite physical medicine neurologist, Dr Dabrowski. He came into the room and said, "OMG, in my 20 years of practice, I have NEVER seen an SMA patient look THAT GOOD!!!  He said her color and skin looked great, her spine was straight and she just looked ......healthy!!! I told him it was a combination of great nutrition and thorough pulmonary management.
 
Erinne will be seeing a pain specialist for her chronic, daily back & tailbone pain, and a GI doc to look at her feeding tube and make sure all is well there.
 
Hockey is still going on for Erinne. They will be heading into playoffs soon.. Latte has the fun experience of having her teeth cleaned this week, which left her loopy for 2 days and prevented her from going to school. She looked pitiful!
 
Next month, we are very much looking forward to our (indoor) camping weekend in KY with a whole bunch of other SMA families. It is the weekend after Easter. FUN!!
 
Okay --I'll try not to wait so long to update again!
 
C'mon SPRING!!!!!!
 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Sunday, March 1st, 2009

 
It's Been A While.....
 
No news is always good news! Things have been relatively quiet here over the last week (or booooring, as my kids will tell you!) as they were off of school for mid-winter break. (Please don't tell me we are only mid-way through winter -- I am sick of the cold and the snow!) I spent most of the week trying to recover from a nasty bronchitis/ear infections/sinus infection which kept us homebound. I am very thankful that Erinne didn't get it!! Must be all of those probiotics in her tube feeds!
 
Erinne is still needing a nap every day, even with not getting up for school this week. We have an appointment with the sleep neurologist next week as well as her physiatrist (physical medicine neurologist). Next month, we are traveling to Madison, Wisconsin to see one of the top 3 SMA docs in the country for a second opinion and to assess her pulmonary function on the new ventilator. I am looking forward to seeing that doctor --- she is WONDERFUL! We have met her at past SMA conferences, but have never seen her in a clinical setting.
 

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Monday, February 16, 2009

 
Monday Moanin'
 
We had a good time at the Red Wings game, even though they lost in a shoot out. We were disappointed that we couldn't briefly visit with the team, even though I sent a fax on Thursday and Friday to request permission. Not sure what the problem is, since we keep getting rebuffed. (I've been trying for 11 months to have her visit the team at a practice.) On our way out the VIP side door after the game, an inebriated "gentleman" (nothing gentle about him, for sure) slapped Erinne on the back in sort of an "atta boy" way and about killed her back. I didn't see it happen because I was in front of her, trying to clear a path for her and Latte. She was in tremendous pain that went into the night and forced her to miss school today.
 
We all seemed to have picked up a virus at the same time, which makes me wonder if we picked it up from someone at the game. Erinne seems to be the least affected, Kevin is next and then I seem to have gotten the brunt of it. (Better me than them.) My ears and throat are killing me, and my chest is tight. Since this is clearly a virus, guess we'll just treat the symptoms and ride it out.
 
Erinne lost her hockey game in a big way, which meant she was majorly upset after the game. She takes her hockey very seriously! On Sunday, she will have a chance to play an abbreviated game ON ICE during an intermission period at the OHL Plymouth Whaler's game. (Gee, can a skate on the ice at The Joe be far behind?!) Pretty exciting stuff!
 
The video clip of Erinne's hockey league shown during the Ohio State/Michigan State game was also shown during Red Wing's Weekly AND it was also shown at the Joe prior to the Red Wings game as well as during one of the intermissions. GREAT exposure for the sport of wheelchair hockey! 
 

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Friday, February 13, 2009

 
An Update Including -- What Else -- Hockey!
 
While I was watching the Red Wing's pregame, I saw Erinne on a sports clip, mentioning the feature they are doing on her hockey team/league which will air tomorrow, Saturday, starting at 5:00pm, during the college hockey game (Ohio State vs. Michigan State) second period intermission (6:15pm ish) on Fox Sports Net (FSN). It was so cool to see Erinne and her friends Olivia and Joshua doing what they love best -- play hockey.
 
Erinne has another hockey game also tomorrow, 2/14 at 1pm. Kevin is in the midst of his playoff run and has games Fri-Sat-Sun.
 
On Sunday, we have a BIG day planned --- we are going to see the Red Wings play the Colorado Avalanche!!! We hope gain permission to see the Wings outside their dressing room after the game. Erinne is busy making a sign to hold up -- any maybe get a few autographs on it too!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Sunday, February 8, 2009

 
What A Great Game!
 
Yesterday's hockey game was GREAT! Not just because they won (4-3), but because of all of the fans that came out for the games! The gym was full! And Fox Sports Net (FSN) and Mickey York were there, doing player interviews and filming the game. Mickey York was just the nicest guy! Erinne gave him one her wristbands and he put it on right away  :D  She really appreciated that! Erinne had many fans there, cheering her on. We'd like to send out a BIG, BIG THANKS to Dr. Michael Mendelow (her orthopedic surgeon), Anton & Tara Botasan (her assistant principal), Patty Peel (her PT), Diane Budaji (her school PT) and Kellie Ruhno (her science teacher) and her family for giving up part of this beautiful Saturday to attend Erinne's game. She LOVED having so many fans there!
 
Next Saturday, February 14th, is "Hockey Day In Michigan" (only in Michigan, eh?) and as part of that, some of the footage shot at Erinne's game will be shown on FSN's "Detroit Red Wings Weekly." It should air on FSN on Saturday at 11:00am and repeated at 4:00pm and then Sunday 2/15 at 1:30am. Hope you have a chance to see it!

 

 

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Friday, February 6, 2009

TOMORROW: FSN Fox Sports Net Is Coming To Erinne's Game!

 

Don't Forget!! FSN Fox Sport's Mickey York, host of RED WINGS WEEKLY, will be at our wheelchair hockey game tomorrow, Feb 7th @ 1:00pm 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!) The game is at Ward Presbyterian Church, 6 Mile Rd & Haggerty. Directions on the first page of this website. HOPE YOU CAN COME!!!!!

 

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Tuesday, February 3, 2009

 
A Few Tidbits On Latte
 
I realized that if you have never have the pleasure of meeting Erinne's service dog, Latte, you haven't had the opportunity to see what an incredible animal she truly is. I want to try and give you a sense of who Latte is. Latte's bond with Erinne is unlike any I have ever seen. Every single day, Latte's big, brown soulful eyes look at Erinne with utter adoration. Whenever Erinne calls me to her bedroom, Latte follows me in there and puts her front paws up on the bed, as if she too, is checking on what Erinne needs. And Latte remains there, supervising me as I reposition Erinne, or hook her up to her machines. Latte knows Erinne's routine by heart. When Erinne wakes up in the morning, Latte again puts her paws up in the bed, as if she is checking on how Erinne's night was. As I carry Erinne out of her room, Latte leads me down the hall to the bathroom, as if she is pointing out the first stop of the morning (as if I might have forgotten!) Then after Erinne is dressed, Latte leads me to the living room to Erinne's wheelchair, letting me know that I need to set her on it, in case I need reminding! Latte smiles -- boy, does she smile! And most of her smiles are directed at Erinne. She happily dons her work vest each morning and closely follows Erinne out the door, to the bus -- as if Erinne might forget and leave her behind. Latte carefully watches the bus driver load Erinne safely on to the bus, before she boards herself. After school, Latte joyfully bounds off the bus and after a quick roll in the snow (or -- yuck -- mud) stands next to the lift, again, watching to make sure her mistress is safely on the ground. Then it is an all out race home -- and even though Erinne's chair clicks along at a good 8 mph, Latte usually beats her to the door. The vest comes off, and she is technically "off duty". She runs around the house collecting her "babies" (stuffed animals -- she is very maternal) and letting everyone know she is happy to be home.
 
Latte gets a bath usually every week in this lovely weather. (Hey -- a dog in the public eye has got to be in pristine condition!) It actually takes me less time to give Latte a bath than it does Erinne. When Latte hears the bath water running, she knows it is for her (the rest of us take showers.) I don't have to drag her into the bathroom or even tell her to go in. She will trot in on her own, climb in the tub and stretch out in the water, and look over her shoulder as if to say, "Yoo-hoo! I'm ready for the bubbles and my rub-down!" She gets lathered up with an organic shampoo "Filthy Animal" and rinsed with "Pure Silk" -- yep -- she does have a beautiful coat! She does not get out of the tub until I tell her she is done.
 
Once Erinne goes to sleep, Latte sacks out on the couch, and has her "doggie dreams". From the sounds of it, she's chasing squirrels and bad guys. But if Erinne calls, Latte is back up, at Erinne's bedside, to see what she can do to help.
 
Yes -- she is one INCREDIBLE Canine Companion -- and Erinne's BEST friend! (www.canineassistants.com
PS. And I love her too!