Wednesday, December 29, 2010
Wrapping Up 2010
We enjoyed our Christmas -- how about you? We weren't able to spend it with family (which always makes me sad), but we had a blessed day together nonetheless. Erinne said her favorite gift was the flat screen 26" TV she got for her bedroom. She spends A LOT of time in bed and the bigger TV makes that time a little more pleasant. (She had a 19" that she had to watch "between her toes" as I liked to tease her!) I would really like to get it ceiling mounted which would bring it a little closer to her and have the added feature of tilt and turn, and also allow her to easily see it even when she is laying on her side, but I first have to find the right mounting platform. She was a good student today and even did some homework with our respite care friend, Kelli. Tomorrow we visit her BFF Olivia and then on New Year's Eve, we will be at the Red Wing's game and she will be visiting the locker room after the game. She hopes to congratulate goalie Chris Osgood on his 400th win in person!
Erinne had a nerve block done on her tailbone on Monday (Dec 27th) which went very well. She now has no more pain in her coccyx (which was broken and dislocated in 2006. It has caused her pain ever since). She has had this procedure done 2 times previously, which lasted 11mos and then 4 mos. We are hoping for an 11 month reprieve again. Now if we could only get her spine surgery done (and her rods lengthened), maybe she could be pain free for a little while. Many people don't realize that she lives with almost constant pain in her back because she always has a smile on her face.
It is hard to believe she goes back to school in less than a week. Erinne and I have enjoyed the sleeping in time!
Thanks for checking in!
Saturday, December 11, 2010
week of school and then Erinne is off for 2 full
weeks. We are looking forward to the break. School
takes a lot out of Erinne, and pain and fatigue
prevents her from doing much else doing the week.
She has lots of friends she wants to catch up with
during her time off.
Erinne picked out our
Christmas tree tonight (brr!). She was anxious to
get it up and lit, so she can decorate it tomorrow.
(We needed to get it tonight because we are due for
a bunch of ice and then snow. I don't go out in ice
anymore (think broken leg and bad back) and Erinne's
WC doesn't handle ice too well.) If you're local and
looking for a great place to get a tree, the folks
on the tree lot at Wayne Rd and Warren (next to
McDonald's) have great trees and are good people to
deal with. They remembered Erinne (and Latte) and
mentioned they still have her wristband. Latte was
not so impressed with the outing and came home to
roll in the only mud patch within 500 feet of the
house. So I guess it is bath night for the dog, at
least. (Not what I wanted to do tonight.....!) So,
I'm checking and stringing lights, and managed to
cut and zap myself with the first string! Doesn't
bode well for the rest of the night!
Erinne's back is still causing
her a great deal of pain and we are anxious to hear
when her surgeon is back from his stint doing
surgeries in Africa. Her back pain is waking her up
at night, causing some pretty sleepless nights for
both of us.
I had my spine procedure this
week. At least I had an anesthesiologist this time
who didn't agree with my surgeon that I needed to be
mostly awake for the procedure. I don't remember any
of it, thank you Lord! It may be a month before we
will be able to tell if it is effective.
I'll catch up with you again before Christmas. Stay warm!
November 16, 2010
Sorry For The Lack of Updates!
Things have gotten busy and I did not realize that it has been over a month since I have updated.
Erinne and Kevin both ended up with pneumonia -- Kevin first. Erinne kept me hopping, but at least we did not have to be hospitalized. It seems as if she has missed more school than she has attended this first quarter. I hope the second quarter is better/healthier for her.
Erinne & Latte were featured in a local magazine (Special Edition, Metro Parent Magazine). The title is "A Girl and Her Dog" and talked about her journey to be matched with Latte and their relationship at school. It was wonderfully written and I hope good exposure to Canine Assistants, the organization that gave us Latte. The on line link to read it is http://www.bluetoad.com/publication/?i=49504&page=1&23&p=25.
Erinne has resumed hockey and is happy to be back at it -- except that her wheelchair is not staying powered up through the entire game. It is time to get new batteries. It is also time to get a new wheelchair, which will be a 10 month fight with the insurance company. She's asked me to upgrade her chair to include the "speed package" ---- gotta have the fastest chair possible! I am also looking at having lights put on it, so she can see and be seen at dusk/night.
We are beginning to plan for ...... I hate to say it ........ high school next year. Scares the bejeebers out of me to even THINK about high school. Thank God she will have her nurse Amy and Latte with her. Her high school consists of a large campus of 3 high schools and 6,000 students. The logistics of it all is turning my hair gray!
Erinne is desperately in need of spinal surgery. We tracked down her surgeon (who is on sabbatical) before he headed off to Africa to do surgeries there for 4 weeks. He hadn't seen Erinne in a while and didn't really think she could have grown too much more since puberty began. Well, one look at her and he realized that she does indeed need one more shot at growing the rods in her back. She is as tall as me and about 96 lbs.
My back continues to cause me a great deal of pain. I am having my 7th (and last) procedure on my back on the 19th. This is the last part of the nerve ablation (burning/deadening the nerve endings). If this doesn't take care of the pain, then a spinal fusion is my last option. Some days the pain is absolutely awful. My ankle is still painful. It is amazing how much damage one fall can change a life forever.
Assuming my procedure on the 19th goes well enough to allow me to drive, Erinne and I plan to drive to Kentucky to share Thanksgiving with my brother Gregg, (my rock and prayer warrior) his wife Jodi and my niece and nephew, Rachel and Noah. They will have a full house as Jodi's family will also coming in from out of state --- that's 11 house guests for 5 days. WOW. This will be our first family holiday in a very long time, as we have not been able to travel with our unreliable transportation before.
Kevin has a new job as a bread maker (2:30am-10:30am) at our local gourmet market. Since the holidays are extremely busy at this store, it is doubtful that he will be able to go with us to Kentucky. He will probably take in the Lions game with Jim on Thanksgiving.
No news from Extreme Makeover: Home Edition. But that does not mean we are out of the running. There is very little if any home construction going on in Michigan during the winter months. So, we are hoping and praying for some news in the spring. Keep praying!
Erinne's professional portraits should be ready soon and I can't wait to post them here for you to see!
Thanks for checking in on us!
Fall is here and it is beautiful --- And so is HOCKEY Season!!
October 11, 2010 Monday
Once Erinne was finally able to kick her bug, she managed to make it back to school. Even now, though, she is not 100%. And now a sinus infection has started up. We need a good hard frost to come in and kill the allergens still irritating all of us.
We went to the Detroit Red Wings home opener on Friday night (10/8) and it was AWESOME! We've missed our Red Wing Hockey. Erinne and Latte are treated so well when they are there. We are hoping to set up a time to meet the players again soon.
On Saturday (10/9) my brother and his family were up here for their annual Halloween weekend. My dad came for the weekend too. First time we've seen him all year. Other relatives also came, including my sister and her family. The weather was beautiful. Erinne had a lot of fun with her cousins Rachel, Noah and Madeleine. Trick or Treating was great too. Latte didn't care for her clown costume though! :-)
On Tuesday, (9/28) we received a very special visit from 2 wonderful people -- Elizabeth Gearhart and Yolanda Morado from McAllen, Texas. That's about as far south as you can go before crossing the Rio Grande. They drove 1700+ miles here with a very special for Erinne --- a 2006 Dodge/Braun minivan with a lift, 36,000 miles on it, and put the keys in Erinne's hands, telling her it was a gift from Victor. Victor was a wonderful, brilliant young man who also had SMA type 2, like Erinne. He was a Bill Gates Millennium scholar who had just graduated from college. He was watching a movie with one of his caregivers when he suddenly had a heart attack and died. His death was a shock to me -- Victor had been very healthy and had no symptoms. (Researchers are just now finding out that children/people with SMA also have undiagnosed heart issues. I know of several other children in my SMA Family who have died of heart attacks and had no cardiac symptoms.) Victors caregivers, of which Yolanda and Elizabeth are just two of them, felt that Victor would have wanted Erinne to have his van, knowing the sad state ours was in. (Ours gave both Erinne and I a lot of back pain just riding in it and prevented us from traveling anywhere. Plus it has 260,000 miles on it). The kindness of Victor, and Elizabeth and Yolanda to spend 4 days driving here, to gift a van to us is almost beyond belief. Erinne now gets to ride in the front passenger seat area (the front passenger seat is removable) which has always been a dream of hers. (And boy, is this chick an expert in being a back seat driver! Geez! I think she has somehow memorized the motor vehicle code book because I can't make a single lane change without putting on my turn signal or calling me out if I am 1 mile over the speed limit!) We are so, so thankful for this wonderful gift. We now will be able to gift our van to another SMA family who does not have one right now. We are calling this the Giving Van, and hope to continue passing it on to families in the area in need of wheelchair transportation. And for the first time in longer than I can remember, we will be able to spend a holiday (Thanksgiving) with family (my brother) instead of spending it alone. That is a blessing too!
On 10/4 Erinne and Latte had a photo shoot for a local magazine, "Metro Parent Magazine" on service dogs in school. I will for sure post a link when the publication comes out!
After 7 different procedures on my back, I have not seen much improvement. I have one more left to go (burning the nerve endings) but the degenerative arthritis has really set in. Please keep my back in your prayers!
More adventures to come soon, from Driving Miss Daisy!! (Love you Erinne, even when you're a back seat driver!)
September 25, 2010
I JINXED MYSELF! If I just would have left out that last line of my last post (you know the line, about our "last" ER trip for the winter?)....... we went back on Thursday (9/23), just 5 days later. So if you are keeping track, that is 2 visits to the pediatrician's office and 2 ER trips in the 2 weeks that Erinne has had this WICKED virus!!! This is just not Erinne's usual pattern. And the even better news is, now *I* have it. I'm ready to have a stomach resection now, as mine is so painful and useless. I can't eat and am trying very hard just to stay hydrated. I go from my bed to Erinne's room when she needs me (often) and back to my bed again. Kevin is trying to avoid us like the plague because if he gets it, it'll mean the end of his new job as he will not be permitted to take 2 weeks off of work. We've had little to no help here, and since my circle of support is rather small, the hospital stuff has basically sat, unpacked, in my dining room. And forget about home maintenance.....
I am *hoping* Erinne can tolerate going back to school on Monday. She has missed so much by being out all but 4 days of school for the start of the year. I hope I am better by the end of the weekend because I have several volunteer commitments out at U of M-Mott's Children's Hospital next week, as well as company coming up from Texas. And going out to eat with the company does not sound the least bit exciting to me right now. Toast isn't even the least bit exciting right now.
Ugh. If this is the way winter is going to be, then its time to move to some place tropical.
Saturday, September 18, 2010
The Nasty, Germy Season Begins-- TOO SOON!
We has a GREAT start to the school year! Erinne LOVES her teachers, loves her friends and loves school...for how long it lasted anyway. Her 4th day in, she started feeling extreme fatigue. I just attributed it to the start of school and the early routine. She was sleeping constantly and was still tired. But then the other symptoms started kicking in at the beginning of the following week: unable to hold her head up while sitting (and needing to wear her cervical collar while in her WC). From there it went to neck pain, constant, severe headaches, blurred vision, severe stomach pain, constant feeling of needing to vomit, and the ubiquitous spine pain. Her heartrate was significantly elevated and her oxygen levels were very low, requiring 4-5 liters of 02.
I just couldn't seem to get a head of what I knew was the impending dehydration. She could not tolerate even the tiniest of sips, nor any tube feeds or Pedialyte. By the following Friday (a week after this all started) I had to give it up and head to the doctors. I had been in touch with her doctor during the week by phone and Friday was our 'cut off' date that things had to improve, or we'd have to go with plan B. I knew she was very dehydrated at that point and that she needed IV fluids immediately. So on Friday, she was checked out and her doctor asked me if I thought it was time for a trip to the hospital. I told her I felt it was. She concurred. Erinne was very sad and afraid -- sad that she was going to miss her trip to the Renaissance Festival and afraid of how many times she was going to be poked before they were able to get an IV in (she has bad veins and is an impossible stick -- which is even worse when dehydration is an issue.
So we headed home to pack up as if she was going to be admitted for a few days (always have to be prepared for the worst and expect the best!). I was trying very hard to get there before the time that the ER is usually 'hit' - the time right after the doctors' offices close, parents get home from work, and evening sports activities start. By then, it is elbow to elbow (only about 12 beds in the ped. ER side). By then, the stretchers are lined up outside every room, and every room is also full. I want to get there in time to get a room so we can close the door and avoid germs. We made it in just in time. Shortly after our arrival, they were slammed.
For good or bad, they do know Erinne well. Many of them, including the doctor taking care of her, knew that we were nominated for an Extreme Makeover: Home Edition. Many of them sent e-mails many months ago, nominating Erinne. It took 4 tries to get an IV in. Erinne had blood drawn for labs, x-rays were taken and a urine analysis was done. They ran a 1,000ml bag of fluid in as fast as it could go, then did the same for bag 2. She began to feel better almost immediately. Once you reach the point of dehydration, your brain dries out, causing severe headaches, blurred vision and stomach pain. The tests came back, reflecting a bladder infection and of course, significant dehydration. They asked me if I thought I could manage her at home, or did she need to be admitted. Of course my preference was to get the heck out of there ASAP.
So by about 1:00am, we were on our way back home, with all the stuff in tow that we would need, had we needed to be admitted. (Erinne's dad dropped us off at the hospital because his van broke down just a few hours before and he needed to be able to get it towed and repaired. He also had to head into work at 10:30p. So I had to lug everything we could possibly need with us.)
My back was absolutely killing me by this point and I couldn't stand up straight. I laid in the back of the van on the floor behind Erinne's wheelchair on the way home, trying to stretch the back out. I knew I still had to get her in bed and equipment unpacked and hooked back up before I could go to bed, so I had to be able to stand up straight and function before I could go to bed.
Erinne slept for 16 hours and woke up feeling great.....and asking for pizza! It is amazing what a couple of liters of fluid can do for the body, aye?
I am praying that that was our last ER visit for this winter!!
Friday, September 3, 2010
School Starts In 4 Days!
School starts late here in Michigan. Erinne will be in 8th grade -- last year of middle school -- and then off to (I can't even say it) high school! I will be asking the district to start working on a plan by the end of this month for next year. Her high school is actually 3 high schools on 1 campus totaling some 6,000 students. A logistical nightmare for us!
She is excited to start school on Tuesday and was reunited with friends she hadn't seen all summer at registration last month. Latte will be happy to return to school too, as she is happiest when she is working.
Right now Erinne is trying very hard NOT to pick up this stomach flu that she (and I) were exposed to this week. It has been extremely contagious. She doesn't need this right before school starts.
Still trying to pick out the best pictures of the professional ones I had taken. (See link below if you missed it!) Besides traditional pictures, I will also have thank you cards and large post cards made too.
The brackets mounted in her lower jaw are coming loose with the use of the elastics so I believe she will be having plastic/oral surgery again in the very near future to re- anchor them. This of course can only happen to Erinne!
The salt water aquarium that was gifted to Erinne is doing well and we have slowly begun adding aquatic life to the tank. We have a couple of different things in there already, including a chocolate chip star fish that we hand feed and a clown fish ("Nemo") that must be on crack! She is looking forward to adding a couple more fish this weekend.
We are going to the Detroit Tigers game on Monday at 1:00pm. Then we go straight home and begin our "getting ready for school tomorrow" routine.
We have 35 days until the Detroit Red Wings Home Opener. (Remember we live and breathe red Wing Hockey!) This year we actually have TICKETS because it is on a Friday so we are SUPER excited!
Kevin starts a new job today and we are very happy for him. It is time for him to meet new people and make new friends.
I'll update again next week after the first week of school is over (and we are all dead with exhaustion!)
Saturday, August 21, 2010
I had new professional pictures taken of Erinne and I can't decide what I like the best. Can you check out the pics at www.tammy-miller.com and look under the tab "Recent Events" and Erinne's name will be at the top. Let me know what your favorites are, please? Thanks!!
Saturday, August 14th, 2010
A Special Gift
Erinne has always loved fish, especially salt water ones. I used to have a big tank where I worked that she would love to sit and watch. It was big enough that we had some pretty interesting things in there. Well, Erinne was surprised last week with a gift of a salt water tank and stand from a total stranger from Grand Rapids, Amy, and some of her friends from a group called Michigan Reefers. They heard of Erinne from another SMA family out their way and came together to give Erinne this very special gift. The tank is set up in her room and the water, sand and rocks are in it with the filter running. It takes time for the tank to settle and stabilize before fish can be added. We will meet other reefers who will set us up with some live coral (and other things that I have no idea what they are, but will be learning quickly about!) and then eventually the fish will be added. Even empty, it looks beautiful. THANK YOU Amy and the Michigan Reefers for your wonderful, thoughtful donations!
Erinne's bird Jason is now 20 weeks old and is very playful and outgoing. He is a terrible flirt and loves it when visitors stop by. He has become more and more talkative in his own language. The only thing we can clearly recognize is when he does his Elmo laugh (he watches lots of Elmo DVDs) and barks like a small dog. He is very affectionate and does not bite -- but he loves to 'taste' you, much like a baby has to mouth everything. Latte is still a bit jealous and probably needs to get back to school so she can get back to her day "job".
Erinne has been a bit lonely this summer for friends to come over or go out and do things with because I have been so limited in what I can do with her because of my back (which is in bad shape). I have had 5 injections in my spine trying to relieve the pain and our last option (9-7-10) will be to burn the nerve endings with radio frequency waves, If that doesn't work, then I will have to have my lower back fused, which will make life extremely complicated. It is very painful to sit or stand. All I can do is lay down. Driving is almost impossible. I am very sad that we had to miss our trip down to see my brother and sister-in-law this week. Erinne needs to see the SMA specialist in Madison, Wisconsin and another specialist who is studying SMA and heart issues in Columbus, Ohio and I can't do either of them right now.
Erinne's heart tests came back with some negative changes as compared to previous studies but I was told not to worry about it and we would wait for the next set of studies in a year to do another comparison then. "Don't worry about it" isn't in my vocabulary (If I listened to all of the 'don't worry about its' I've been told, Erinne would have died long ago) and am discussing with Erinne's pediatrician if we should apply to be part of the studies going on in Columbus where they DO believe that SMA has heart issues.
Orthodontic wise, Erinne's bands are in place and are hurting, so they must be doing their job. One of the front plates is loose, so eventually it will get pulled out and she will have to have it surgically re-implanted. Right now, they are just watching (and x-raying) it.
Erinne's iPad has been keeping her busy. I can't recommend the iPad enough. What a wonderful thing for someone with so little hand strength. It is very empowering to her. I am amazed at how much she knows about it!
Nothing from Extreme Makeover:Home Edition yet. Keep praying!!!
So that is August so far!
July 31, 2010 Friday
Oh, What A Night!
Saturday, July 24th, 2010
A Little Delinquent!
I'm behind in updates!
Sorry --- slipping here! I update my FaceBook (Look me up) far more often just 'cuz it is easier!
So to catch up....
Erinne had surgery again yesterday (I've lost count --- 15 surgeries I think.) She had a nerve block done on her tailbone/coccyx area. It was fractured in a fall 4 years ago when someone tried to put her on a toilet, dropped her, and never it healed correctly. As you get older and grow, it is harder and harder to sit on it all day. Last time the nerve block lasted a whole year, which we were so happy with!
Camp was great, as always --- a lot of rain. They still had a great time and she loved her new partner Ashley! I think the best part was playing pranks on the boys cabin and the girls definitely won this year! We hope to see Ashley over the next couple of months.
Erinne's new baby bird Jason (goffin cockatoo) was so happy to see her after camp! He has definitely established his pecking order in the household. He gets a long well with Kevin and they watch a lot of late night movies together. Jason is very in tune with Erinne's voice. He is quiet in the AM until he hears her call out that she is awake. Then he starts yelling and squawking to let her know he wants her now! If I let him out of his cage, he takes off (running) down the hall (his wings are clipped so he can't fly) to her room and has figured out a way, using the garbage can and bed rails to get up to her. He is 17 weeks old this week and on the whole he can be very self sufficient and eat regular bird food. But he insists (moans like he is dying) until he gets me to feed him human baby food from a syringe (this is how they are hand fed/bottle fed in the as babies. So the most demanding one gets fed first!
Orthodontics painfully continue on for Erinne, as that top jaw gets pulled forward, millimeter by millimeter.
The next spine surgery is tentatively scheduled for sometime this fall.
Latte is doing fine since her "incident" of a mass in her throat. Still not quite sure what that was about!
Okay, consider yourself caught up! I'll try not to take so long again.
Hugs and kisses from Erinne & Latte!
Friday, June 25, 2010
Ready To Head To Camp!
Erinne is excited to head to MDA (Muscular Dystrophy) Camp tomorrow. This is her 7th year (I think -- !) Camp is up just north of Lexington, Mich, up in the "thumb" on the shores of Lake Huron. She spends the entire year looking forward to this week. Last year it was canceled (nationwide) because of swine flu outbreaks. She wouldn't have been able to attend anyway because she was in the hospital with severe pneumonia that she acquired while at U of M Vent Camp 2 weeks prior. So she has 2 years of excitement built up! She has many friends at camp, including some from her hockey team, as well as her BFF Olivia. She'll be there until Friday. The only down side to it is that the MDA camp directors will not allow Latte to attend camp with Erinne. I could make a huge legal issue of it, but I have so many other battles I am juggling, I have chosen not to fight this one -- at this time. That can always change. So now I will have Latte glued to my side, very sad, all week. She hates the separation. She will go everywhere that I go and we usually do some retraining/refreshing activities, plus lots of exercise. I think sometimes she is happy to see the week end just so she can be rid of me! :-) Erinne's baby bird, Jason, will be ready to come home as soon as she returns from camp. She is very excited about that!
This is my one week off a year, and, while it took some time to adjust to not having her here (especially since when she is not at school, we are together 24/7 and I am up with her several times each night), I treasure my week to focus just on me. Mostly I use it to catch up on sleep and rest my sore back. I also try to schedule my doctor appts, and remind myself that I do have friends that I need to see and almost need to force myself to go out and enjoy some R & R. I do have a couple of "projects" I need to tackle while she is not here. The week goes by pretty fast!
Friday, June 18, 2010
As best as we can tell, the x-rays turned out to be clear for any tumors. Not sure what is wrong, so I am just keeping a very close eye on her. She is having some trouble eating and choking/coughing and is drooling (very occasionally) as well so those are concerning symptoms. I spoke with both the Canine Assistants Vet and the Vet surgeon and we will watch her over the next few days and see what, if anything, develops. It is hard to just sit and wait (much like it is for Erinne when she is struggling). Latte is such an important part of our family!
I am heart-warmed by the care and concern shown for her --- thank you!
Thursday, June 17, 2010
A news article on EMHE -- helps our chances!
I found this in an EMHE news press release!!
According to a press release issued by the Extreme Makeover crew, the creative team behind the show is seeking deserving families who stand out in their respective communities.
“We are in search of true deserving families - people who have amazing strength of character and who put their own needs aside to help others ” the release reads. “Whether it's a mom, a soldier, a teacher, or a fireman, we think anyone who inspires those around them may be a great candidate! In addition, the producers are looking for families whose houses need major alterations or repair- homes that present serious problems for the family and affect the family’s quality of life.”
In addition to its customary search criteria, Topacio and her colleagues are putting a special emphasis on families that do not own their own homes.
“This season Extreme Makeover is also looking for families, who do not own their own homes, so long as land is available through other sources, a nonprofit, city or county,” the press release explained.
“A family must also be able to show producers how a makeover will make a huge difference in their lives.”
Once a family is selected, the Extreme Makeover team will rely on donations and volunteer work to build a home in only seven days.
“There’s nothing more that brings a city together than doing something like that,” Topacio said. “Everything on this show is based on donations. It’d be great. It’d be really great thing for the city.”
Monday, June 14, 2010
Please - Not Another Crisis!!!
Unusual but VERY IMPORTANT prayer request...x-rays showed that Latte has a mass in her larynx and the vet is very concerned w/the size, shape and location. We see an oncologist and surgeon tomorrow morning. It is not a toy because she doesn't chew up toys. She is having trouble breathing & pants a lot. We are beyond devastated. I am trying to keep it low key around Erinne until I know for sure what is going on. I left a message for the Canine Assistants Vet, who will be talking with vet #1 today, as well as the vets tomorrow. Latte is such a huge, important part of our family and crucial to Erinne.
Saturday, June 12, 2010
Still waiting for the results of one of the heart tests (hoelter monitor). Erinne's 1:1 RN at school noticed that while Erinne is on her pulse ox monitor, she has either a missed or extra heart beat at beats 7, 14 and occasionally 23. Strange. (Any opinions?) Erinne still has been struggling with her breathing so with her RT Angels King's blessing, I switched her back to her bi-pap and she seems to sleep better on that, but the problems still are not resolved. Her heart rate is a bit lower on the bi-pap, so that is an improvement. We will be trying out another machine (probably the Triology, which is a hybrid between a bi-pap and a ventilator) as soon as Angela gets a hold of the specialist in Wisc. and gets the order and then will bring us the machine and get Erinne set up. In the meantime, Erinne has a sleep study scheduled for this Wednesday. She is also having trouble digesting her food and tube feeds and ended up with amino acid overload 5 days ago, for which we are still trying to recover from. Today she was awake for 2.5 hrs this AM, napped for 8.5 hrs. She did tolerate some feeds earlier and some pizza later (or so I thought), but nothing was moving through her stomach. She was miserable. I just can't figure it out.
School wraps up this Friday and it looks like Erinne will have her second 4.0! WOW!!!!! Coming up on 8th grade -- hard to believe! Thank You God! She has MDA Camp at the end of this month. We plan to HOOK UP WITH my wonderful brother, terrific sis-in-law and sweet niece and nephew this summer. (They live in KY.) We hope to get together in Ohio in August with a bunch of SMA families (my "other" family!) The only other "biggie" on the schedule is back surgery the end of August.
Her Goffin Cockatoo, Jason, should be joining our family in the next couple of weeks. We got his new cage (the Taj Mahal) put together today. SPOILED BIRD!!!
Still haven't heard anything from Extreme Makeover: Home Edition ...... PLEASE KEEP PRAYING THAT THEY WILL FIND ERINNE A WORTHY CHOICE!!!
A PS. On me.... my spine injections have helped my sciatica pain running down from my hip to my foot. But unfortunately, the injections have not helped the pain between my vertebrae. And, I fell a couple of weeks ago when my "bad" left ankle gave out for the umpteenth time and the fall forced my right ankle to roll, and it appears that I have a torn tendon in the outside of the ankle. Hurts like heck! The left ankle and fibula area hurts most of the time too, where the hardware is in my ankle.
So.....that's life!!!! (I'm [chronically] tired -- time for bed!
Sunday, May 30, 2010
Problems & Concerns
Erinne has had some heart and breathing issues all week and we cannot seem to find the cause. She has had me pretty worried and last Tuesday night, I was darn near hysterical and in tears because I could not get her breathing stabilized. It takes A LOT to unnerve me when it comes to Erinne's health and I was falling apart. It would have not done any good to call 911 because they would not have been able to figure anything out either. Awake, she appeared ok. Asleep was another story. On Monday (5/24) I took her to see her Ped because at school her heart rate was peaking at 240 and yet she could not keep her eyes open or carry on a conversation. Her doctor saw her come into the office and by one look at her, knew things were not good. She slept through the entire exam until we forced her awake. She did not remember leaving school or driving to the doctor's office. Her lungs are clear and nothing obviously was abnormal. They drew a bunch of labs on her, looking for the proverbial needle in the haystack. All of the labs came back normal. On Tues (5/25) she already had an appt to see her ENT to go over CT scan results of her head and sinuses (which were thankfully normal) and have one of her nostril's blood vessels chemically cauterized because it would bleed profusely (you don't want to know how much!) on a twice a week basis. On Wed (5/26) I took her to see her cardiologist. Her EKG and 3D ultrasound were both normal. They attached a hoelter monitor to do a continuous 48 hour heart recording. That will take a few weeks to get the results back. She still has been very exhausted and sleeping a lot (and still having very high heart rates and needing oxygen). On Tues (6/1) we will be seeing a new pulmonology (lung) doctor for a second opinion. I am guessing a sleep study will be in the not too distant future. Beyond that, I am at a loss as to what might be next.
These high heart rates really worry me because sleep is when your heart should be able to rest and regenerate itself and if it is in a constant state of high alert, that just is not good for it, especially in the long run.
So if I could ask a favor of you, please pray that the doctors figure out what the problem is and can fix it right away, so her heart gets some relief.
I'll keep you posted -- thanks!
MAY 16TH, 2010 SUNDAY -- A VERY BLESSED DAY 13 YEARS AGO....
HAPPY, HAPPY 13TH BIRTHDAY to my sweetheart and angel-on-loan, Miss Erinne Rose Williams!! It is so hard for me to believe that we have had 13 wonderful years together. You have blessed my life in ways I could have never imagined. You have made me a much better person. Thank you for being YOU! Love you baby..........
We had an outstanding day today. Even the weather cooperated! We took Erinne's friend Jessica with us to the Detroit Zoo. We had one very funny experience with Latte. We went to the lion-tail money exhibit -- we had a large glass wall to view into the natural habitat exhibit. Latte & Erinne went up to the glass wall and all of the monkeys were towards the back of the exhibit. One of the monkeys spotted Latte and charged towards the (thick Plexiglas) window, getting nose to nose with Latte. Latte was sniffing, trying to figure out what that thing was, but of course she couldn't smell anything. Neither could the monkey, But that didn't stop him from hissing at Latte, and showing his teeth. Then all of the other monkeys came running over, to see what the threat was. They all became quite agitated with Latte's presence. Latte sighed, laid down and ignored them. But they never did her! The other guests were enjoying the monkeys acting out. It was quite funny. We were hoping the chimps or gorillas would have been by their glass enclosures so we could have seen if they reacted in a similar way, but they were snoozing in the sun and couldn't be bothered.
We had dinner afterwards at the Outback Steakhouse which is one of Erinne's favorites. However, no lobster tail on the menu, which she had her heart set on! On the way to the zoo, I gave her her long awaited secret present ----- an iPad!!! She was thrilled! Because of her very limited hand strength, a laptop is no longer workable for her. It is too heavy for her lap and her hands cannot position adequately on the keyboard. The fatigue was just not worth the effort. I think with the iPad (at 1.5 lbs) and about 8 x10", she will be much more successful using the computer and be able to complete her schoolwork on it. The keyboard is on the screen and requires just a minimal touch to use. She and Jessica had a blast using it in the van to and from the zoo and all through dinner. I had to pry it from her hands to take a shower! I highly recommend the iPad, especially for kids/adults with impaired motor skills.
All in all, she had a GREAT day. Only one thing would have made it more perfect ---- if she could just have seen her sister. So this message is for Claire......Claire, you have to let the past go and decide to make your sister a regular part of your life again. You of all people should know none of us are are promised a tomorrow. I would hate for you to have regrets because you continue to exclude your sister from your life. She has always looked up to you and you two used to be so close. She needs you in her life. Please, let the past be in the past and decide to start having a relationship again with your sister. You really don't know her anymore and she wants you to know who she is again. She has matured into such a wonderful young lady and she really needs her big sister in her life. Please?
Love you, Rosie. Sooooo glad you had such a happy day!!!
Friday, May 14, 2010 11pm
THE BIRTHDAY CELEBRATIONS HAVE BEGUN!
Last weekend it was a bowling party with 15 friends, Today it was a surprise lunch party in the library at school planned by the the wonderful school librarian, Rachel. She found Erinne the coolest shirt! It had a picture of a retriever reading a book and said, "I like to read...... a latte!" How ingenious is that? We went out to dinner tonight with a mutual birthday friend. Tomorrow is another adoption visit with her new baby goffin cockatoo. Sunday is a trip to the Detroit Zoo with a friend and then to the Outback for dinner, This soon-to-be teenager knows how to PAR-TAY! I have one more big surprise left for her, and it is killing her to figure out what it is! I looooove you sooooo much, Rosie!!!!! ♥ ♥ ♥
Tuesday, May 4th, 2010 7:30pm (GO RED WINGS!!)
We found out today that as a 7th grader Erinne has made the National Junior Honor Society!! This, despite missing 5 weeks of school last fall because of the swine flu and a couple of additional weeks due to surgery, illness, etc. She also has a 4.0 for the 3rd quarter!! With all of the challenges she faces on a daily basis, to pull off an accomplishment like this.....I am sooooooooo proud of her! Induction ceremony is on Monday, May 18th -- 2 days after she turns 13 years old! I could not be prouder of my special girl!
Tuesday, 4-27-10, 4:30am
Voting has Ended for Extreme Makeover:Home Edition for the next Michigan build. Thank you to everyone who sent in an email, passed the email on to their friends and who reminded us whenever they could that they voted and were praying for us! We fervently believe in the Power of Prayer (just look at Erinne!) and believe that God has a Master Plan to take care of Erinne's longer term needs. We have met so many nice people along the way....strangers who have become friends and friends who have become like family. When we go out in public now it is a rare occasion that we aren't stopped by someone who knows someone who knows someone who knows Erinne.
Now we wait and do a WHOLE LOTTA PRAYING!!!
You can still email Canton Township Supervisor Phil LaJoy (firstname.lastname@example.org) to let him know of your willingness to volunteer/help with this project, if/when the time comes.
We are still looking to purchase a foreclosure/lot in Cherry Hill Village, or gratefully accept a donation of a lot on which to build.
Help us to continue to spread the word via the Erinne wristbands. That is the best form of awareness we have! If you need some, please let us know.
Erinne, Latte and I would be very grateful for the opportunity to speak before any of the business/service groups in the area who would be willing to help make this young lady's dream come true. Just let us know.
Oh -- almost forgot. Erinne was invited to apply for the Junior National Honor Society for next year, because of her GPA and achievements so far! I am so very proud of her!
Thank You and God Bless each of you!!
Tuesday April 20, 2010 11:00pm
Erinne hasn't let her disabilities get in the way of her dreams. And when she dreams, she dreams BIG.
Anyone who knows Erinne, know how much she loves sports, fast cars and animals. (And if you weren't aware of the current zoological count, we stand at 1 service dog, 2 cats, 1 rabbit, 1 hamster and very, very soon, a baby goffin cockatoo. And she is always trying for "just one more." (An aquarium full of salt water fish would be nice, if I had a little knowledge on how to care for it!) I can assure you we won't have any reptiles anytime soon. Some things I just cannot do!
She is also very, very loyal to my alma mater, The University of Michigan (but not because of me!) She lives and breathes Maize and Blue. She plans to attend U of M - Ann Arbor after Plymouth High School. If she keeps up her current GPA of 3.8 and along with her community service (and wonderful personality!), I don't think admission is going to be a problem. After getting her undergrad degree in pre-veterinary medicine (or pre-health or whatever they are calling it then), she then plans to attend Veterinary School at Michigan State University and become a vet.
She also has another dream. She ADORES the Mustang GT. She plans to own one someday, with a custom paint job, the Block M on the side and a great set of spinners. She hopes that Ford Motor Company will have developed their technology to the point where someone with her level of disability will be able to drive a beautiful car like this. (In the meantime, she would love a FAST ride in a GT!)
I would be remiss in not mentioning her dream to live in an accessible home. A home that would allow her the most independence possible. I see in her eyes the worry when she sees me in pain from my back from carrying her, or hobbling because my leg is hurting, or the fear in her eyes when my knee gives out and I go down. The scariest time was when I was carrying her and my knee gave out, and we went head-first into the china cabinet. I was so afraid, because I knew I could have just have easily paralyzed her, or killed her. I know she was very, very afraid too.
This is assuming that she can survive her disease. Pretty big assumption. We need those doctors and scientists to hurry, hurry, hurry with that cure.
I hope you will take a step to help her realize one of her dreams --- living in an accessible home. Please send an e-mail to email@example.com and let Extreme Makeover: Home Edition know that you want to help Erinne achieve her dreams, starting with an accessible home.
Wednesday, April 7, 2010, 2:45am
It was announced here in the local paper on Monday that EMHE is now looking specifically for a METRO-DETROIT Family to select as their next recipient!! The deadline to nominate is April 16th, so if you haven't had the chance to send in an email, nominating us, NOW IS THE TIME!! It is important to tell them not just that we need an accessible house, but what makes us more deserving than others from the area who will apply. Many of you know of the volunteering that Erinne and I do, at Mott Hospital in Ann Arbor and at Providence Park-Novi. Erinne mentors many younger SMA children (and non sma children) going through similar procedures and tough times. Her empathy and ability to relate and put these other children (and parents) at ease is simply remarkable!
From EMHE: "What does it take to be picked for an Extreme Makeover? "We're looking for those special people who have amazing strength of character and never give up. Whether it’s keeping their chin up in really tough circumstances or going out of their way to help others. We want to help people whose stories have really affected their community or made a big difference in other people's lives.” Shumsky added: "There are a lot of people who are heroes to those around them because of the way they inspire others and quietly serve their communities on a daily basis."
Can we count on your help? Email firstname.lastname@example.org.
Thank you so very much! Be sure to include your contact information in the email.
Monday, March 29, 2010
Extreme Makeover:Home Edition is Looking for a Deserving Michigan Family!! YOU CAN HELP!!
EM:HE HAS ANNOUNCED THEY ARE NOW READY TO LOOK TO MICHIGAN FOR THE NEXT DESERVING FAMILY!!!!
It's time to mobilize all of our friends and family for an e-mail blitz!!! PLEASE, PLEASE help Erinne by sending an email to:
If you can, please give them a personal note on why we deserve a new home. Consider telling them how Erinne has touched your life, or a way she inspires you, is your hero, or has made a difference in your or someone else's life. Or, if Suzanne has been the one that has helped you, inspired you or touched you or your family in some way. Try to think of a way to make Erinne/her family "come alive" in your nomination. If you have a picture that you'd like to attach, that would be good too. (Or you can copy one from her website.) We're looking to have many different anecdotes to tell Erinne's story.
THE DEADLINE TO SUBMIT IS APRIL 5TH -- SO YOU ONLY HAVE A FEW DAYS!
WE NEED EACH PERSON ON THIS LIST TO SEND IN ONE EMAIL, AND TO FORWARD THIS TO ONE OTHER PERSON WHO MAY KNOW OF ERINNE OR THE FAMILY AND WOULD SEND AN EMAIL AS WELL.
Each member of your household can write in their own nomination, including Erinne's friends/classmates.
EACH OF HER CLASSMATES/FRIENDS can nominate her too. Parents and teachers, please let the students know that!!! (Maybe worth an extra credit point??)
To be eligible, families must own their own single family home. Nominations must be emailed to email@example.com with an explanation of why the family deserves the renovation, along with the names and ages of family members, and a description of the challenges that their home poses. All nominations must include a contact phone number. For more information, click here.
Here is the information that needs to be included with each email:
March 23, 2010, 6:00am
Erinne has been to her 2nd Red wing game in the past week. Last night's game was do to the kindness of Ms. Pat, Erinne's former bus driver. THANK YOU MS. PAT!!! This game saw the Wings take on the Penguins and the oh-so-despised cry-baby Sydney Crosby. Victory is sweet revenge and the Wings easily beat the Pens. Erinne had a blast! Ms. Pat also gave her spending money and she bout herself a beautiful Red Wing's jacket. We're hoping to squeeze in one more game on April 3rd before the play-offs start. (Erinne's wheelchair hockey play-offs start soon too. If you haven't had a chance to see her in action, her play-off schedule will be posted on the first page of her website. It is amazing to see how competitive wheelchair hockey really is!
Erinne also went to the orthodontist yesterday to get the bands put on the plates that are screwed into her jaw. Only had one problem with that --- one of the plates actually detached itself from the upper jaw bone yesterday morning. Apparently it was due to 'metal fatigue.' So now she has to go back in to surgery to get a new plate screwed into her jaw. Not sure when that will be; haven't talked to the surgeon yet. SIGH.
The dvd of the school pep rally for Extreme Makeover: Home Edition was completed yesterday and looks very professional THAN YOU, ANTON!!! It made both Erinne and I cry! We'll send one with the banner that is ready to go out to LA. Please say a prayer that it, and Erinne, gets noticed!
One of our cats, 10-year-old Ernie (BIG orange-striped -- looks like 9-Lives Morris if you remember those commercials) has this very bad habit of swallowing any bits of string, plastic -- you name it, he's swallowed it. Since he has spent the whole day throwing up on my pillow (!), on a pile of clean clothes, in one of my shoes and of course the carpeting, which I stepped in during the night, I am assuming that he has some sort of blockage and a trip to the vet's office is in the very near future. DARN CAT! Carpeting, I can understand -- but my pillow? C'MON!!!
Hmmm....wonder if it is too late to try and fall asleep, before Erinne gets up.......
Tuesday, March 16, 2010
March To The Playoffs!!
That's our mantra now -- our Detroit Red Wings (DRW) are working so hard to make it in to the playoffs. Erinne was invited by Mike Martin (a DRW manager) to watch last Tuesday's practice. He took 2 1/2 hours out of his VERY busy day to accompany us at The Joe. THANK YOU MIKE!!! She had a chance to see 12 of the Wings after the practice, get autographs on her new Osgood jersey and take pictures. (I know! I need to get them downloaded for you to see!) Erinne and I went with her Dad to the Wing's game last Saturday against Buffalo (and won in overtime!) We briefly met a very nice lady named Maureen who generously bought Erinne a beautiful jersey in Red Wing's red with the classic Detroit D on it. THANK YOU MAUREEN!! Erinne's former bus driver, Ms Pat, showed up on Friday with 2 tickets (and souvenir money!) for us to attend the 3/22 game against Pittsburgh and "Cindy Cries-baby" - aka Sidney Crosby (nope -- we don't like him!) That's like THE BIGGEST game of the year and we are so excited to be able to be a part of it!
Hockey fills up our spare time in the spring....Erinne's team won the game on the 6th and again on the 13th. Woo-Hoo!!! She has her last regular season game on the 20th and then she starts her playoff season. She's also looking forward to Detroit Tiger's baseball starting in just a couple of weeks.
Erinne recovered from her surgery BEAUTIFULLY!! She starts her orthodontic work next Monday the 22nd. The doctors are hoping to pull her UPPER jaw (not just the teeth) forward about 10mm. It could take up to 12 months to accomplish that.
Erinne is already planning for her birthday party (May 16th she'll be 13!!) and trying to decide what activity to do and where it will be held. This year we will have her birthday party early, as every other year we have disappointingly found that there are waaay too many graduation parties, weddings and dance recitals the end of May so we need to do this the beginning of May.
No word on her new baby bird yet. It is in Florida and we are waiting for it to hatch -- any day now! It is her birthday present! They are supposed to send pictures of it being born so Erinne can start her own "baby book."
That's it for now! C'mon Spring!!!!
Friday, March 5, 2010, 6:30am
I could not have asked for a better outcome! Erinne did fantastic with the jaw surgery! Everyone bent over backwards to accommodate our 'unusual' respiratory protocols and allowed Erinne to call the shots on what she wanted -- no IV till she was asleep, Mom in OR w/her, when to be extubated in recovery, and having Latte with her at all times except in the OR. I could see the positive changes in the philosophy of care from the last time we were inpatient there (June 2009) and the last surgery we had there (Nov 2002). I couldn't be happier! Latte demonstrated how tight her bond is and how devoted she is to Erinne -- even had a few staff in tears! We were admitted to the stable vent unit around 4pm. Erinne was feeling so good that she was up in her chair and in the play/activity room within a couple of hours of arriving on the floor and was in the activity room playing air hockey. When it was clear that she was not having any problems w/the after effects of the anesthesia, the docs allowed us to be discharged at 8:30pm! Ahhh -- there's no place like home! Erinne finally saw her face in a mirror when we got home and she was a bit shocked at how swollen and bruised her face is. I was told to expect more swelling before it started to go down. She woke up twice during the night to be repositioned and asked for pain meds once. Eating will be a huge challenge, but hey -- that's one of the benefits of having a feeding tube!
She is planning to play hockey tomorrow and will look like a 'true' hockey player with her facial bruising! :-)
Thanks for the prayers and kind thoughts!
Wednesday, March 3, 2010
Surgery - AGAIN - Tomorrow!
Erinne will be having her first (of several) jaw surgery tomorrow at about noon. We need to be at the University of Michigan-Mott's Children's Hospital, Ann Arbor, at 10:30am, which is a nice change of pace. Usually Erinne is the first case for her orthopedic surgeon and we have to be at the hospital at 5:30am (which I usually am NOT on time for!) Erinne is a bit nervous because her last 7 surgeries have all been done with her orthopedic surgeon at Providence Hospital and many familiar faces in pre and post op and on the peds unit. I do a lot of volunteer work at Mott's on the Patient and Family Centered Care Advisory Council (and one of my committee assignments is the perioperative committee) so my 'connections' will be put to good use, getting the best anesthesiologist assigned to Erinne's case and making sure things run smoothly in the recovery room and then on the floor. Our usual post op protocol involves NOT removing the endotracheal tube (breathing tube) before she leaves the OR and extubate her when I am at her bedside in the recovery room and I can cough her with our cough machine and then put her on her ventilator and mask. (This is not standard protocol. Parents are not usually allowed to be present for this.) But because Erinne's care plan is so unique, I have the feeling that the post op folks will be willing to work with me on this.
I hope to have Erinne discharged early on Friday because I have to have an MRI of my spine at 3:15pm.
We got a call yesterday that Erinne has FINALLY been invited to attend a Red Wing's practice next week! Woo-Hoo!! It only has taken 3 years to find the right connection. Special thanks to Tiffany at CLS who made that call for us, and to Mike Martin of the Red Wings front office, for extending the invitation! Erinne is totally geeked about this! We hope to pass out more Erinne wristbands to the players and staff and let the key Red Wing people know about our Extreme Makeover: Home Edition nomination, and Erinne's wish to have them involved in the makeover.
I'll be taking a different computer to the hospital so hopefully I can post a more timely update after surgery tomorrow (unlike last surgery!)
As always, we appreciate all of your prayers and kind thoughts for Erinne's surgery tomorrow.
Saturday, February 27, 2010
By now you've probably read the story in the Canton Observer, or the MLive story, or watched WXYZ-ABC CH. 7's stories on Erinne. We are very, very grateful for all of the interest and concern. I'd like to single out reporter Jeremy Johnson from WXYZ-Ch 7 for such a great story, and for the 4 hours he spent with us. Thanks too, to Brad Kadrich for the well-written story in the Canton Observer and Jessica Nunez at MLive. But most of all, we owe a huge debt of gratitude to TARA BOTOSAN, Assistant Principal at East Middle School, who put together the pep rally and brought the students all together. And now her husband, ANTON BOTOSAN is donating his time and expertise to put together all of the video footage to send to ABC's EM:HE, along with the signed banner and the newspaper story. We sure do feel all that love! Now what's left is to pray that God will answer our prayers.
Erinne and I had a girl's night out (MADD -- Mom, daughter and dog!) at our favorite rib restaurant. While we were there, someone came up to us and said to Erinne, "You're the young lady I saw on TV!! I sure hope you get your accessible home!" Erinne was surprised. We made sure she left with an Erinne wristband. (I've almost gone through 2,000 wristbands!)
And I'd like to ask for a few prayers for me ---- on Tuesday I see a neurosurgeon about my back. I finally have health insurance again and had some x-rays done on my spine. (The pain is getting to be overwhelming.) The x-rays showed that I have compression in the L-4, L-5 and S-1 vertebrae. I don't want to hear, "You have to stop lifting Erinne." (To which I'll say, as my dear friend Cynthia suggested, "What shift shall I sign you up for?") Or even worse -- what I heard this week from someone I love, "It's time to put Erinne in a nursing home. You can't continue to do this." I will never in a million years ever do that! All I can to is fall back on my faith, and know that God won't give me more than I can handle. My wonderful brother reminded me that (Old Testament) Job asked God to take his [unspecified] affliction away, and God decided not to. So I am going to turn this over to God and trust that He has the perfect plan in mind for Erinne and me. I would like to be able to take Erinne's worry away...she is constantly watching my movements and my [strange] gait and feels badly that she is contributing to my pain.
Appreciate your kind thoughts and prayers! Please continue to help us spread the word about Erinne's dream for an accessible home. Someone, somewhere has a contact who has a contact.....to get to the right people out in LA at EM:HE. All they need to do is spend 5 minutes looking into Erinne's story and realize that she should be one of next season's chosen families.
Thank you so much!!!
Saturday February 13, 2010
Erinne's EM:HE Wish -- TIME CHANGE
UPDATE ON WHEN ERINNE'S STORY WILL RUN ON TV.....I heard from the videographer yesterday who said his producers want to run Erinne's story right after the new EM:HE airs. So her story will be on at 11:00pm, Sunday, 2/14... ABC/WXYZ Channel 7. Canton Observer Newspaper article still due out on Sunday. Hope you'll be watching!
Friday, February 12, 2010
What A Day!!!
WHAT A MIND BLOWING DAY! Erinne's school, East Middle School in Plymouth-Canton held a pep assembly today in Erinne's honor. It was so AWESOME!! It brought tears to my eyes -- and Erinne's too. She was overwhelmed by the love she felt. The assembly was HUGE! The Pep band played, the students made posters and decorated t-shirts at home and brought them in for the assembly -- all supporting Erinne and her dream for an accessible home. WXYZ/Ch. 7 sent a videographer (thank you Jeremy!) to record it. Our township supervisor, Phil Lajoy and his assistant Debbie attend the assembly too! The videographer decided to stay and keep taping and he ended up spending 4 hrs w/us! He came back to the house and recorded a typical day @ our house, and captured how inaccessible our home really is. The story will air locally here on WXYZ/Channel 7 on SUNDAY 2/14 on the 6:00am news. I know -- early! Be sure to DVR it! Also, the Canton Observer Newspaper will run a story on Sunday 2/14.
A copy of the school pep assembly & video will be send out, along with the 4'x8' banner with over 1,000 signatures, out to LA to the producers of Extreme Makeover:Home Edition with the hope that Erinne's story will touch their hearts. I will post a link to the TV report and the newspaper story as soon as I have it.
You can add your support for this dream of Erinne's by e-mailing Phil LaJoy firstname.lastname@example.org , Canton Township Supervisor. If the producers of EM:HE are to consider Erinne's nomination, they would need to contact Phil to work out the details.
And a HUGE THANK YOU to East Middle School and especially the principal, Amy Potts and the vice-principal, Tara Botosan for putting this wonderful assembly together and to the students and staff for embracing Erinne so warmly!
Links to follow soon!!
Sunday, January 31, 2010
Erinne's had a few doctor's appointments the past couple of weeks, keeping us busy.
Erinne is doing well, all things considered. Vent
clinic (Pediatric Home Ventilator program) check up
was great! She FINALLY is back to her baseline FVC
(lung capacity) after her pneumonia last June. It
normally doesn't take 6 mos to get back to baseline,
but this was a bad pneumonia. Because she was at
Vent camp and treatment and our usual (home)
pulmonary protocol wasn't begun as quickly and as it
is here, that bug had a 4 day head start. Normally,
we are kicking the battle and back to school within
6-7 days. And when your FVC (lung capacity) baseline
is already only 27%, there is little margin for
error. (And that is one of the reasons why I have
her on a vent at night, and during the day, as
needed....and she is managing to still keep up with
a full schedule!)
So that was the month of January! Busy month!
I am working on setting up a blog, which will have a link at Erinne's website. This way, I can update and post my own pictures. I'll let you know as soon as it is up and running!
Saturday, January 23, 2010
Thank you doesn't seem adequate but it is all I have to give. I was so very touched by the people who took the time to vote in Erinne's name -- people I went to high school (30 yrs ago) and grade school, people who have crossed paths at some point in Erinne's life, and friends of friends of friends that I don't even know. We are so very grateful for your support.
If you want to do one final thing this week, please sign this SMA petition. http://PetitionToCureSMA.com. There is a bill in Congress right now that needs your support:
The SMA Treatment Acceleration Act will:
About SMA Research
And finally, this was written by Bill Strong, father of Gwendolyn Strong [Foundation] who got this whole Chase Community Giving/SMA thing started. His words were so profound that I wanted to share them with you:
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that has." -- Margaret Mead
"We did it! We really, truly did! Together, we accomplished the monumental. Together, we raised a TON of awareness of SMA. Together, we are having a material impact on curing it. Together, we are changing this cruel disease -- FOREVER! Out of more than 500,000 charities, the Gwendolyn Strong Foundation, striving to END SMA, received nearly 52,000 votes in 8 days and placed 6th -- sixth place!
For that honor, we'll receive a $100,000 grant from Chase which will be used to accelerate awareness and research toward a cure. Never before have we been part of something like this -- a true grassroots movement. Something so much bigger than ourselves. Baring witness to a change occurring -- a shift in what has been before. We are humbled, moved, and motivated by the extraordinary that has happened this week.
We are so proud of the amazing SMA community.
The families who virtually stopped all else in their
lives. The parents who ferociously fought and bore
their souls to expose the agonizing reality of this
disease. And did so with painfully beautiful
poignancy. We are humbled by the extraordinary acts
of kindness, the grassroots activism, the tireless
persevering, the enormous favors called in from
those both impacted by SMA and not, but who
regardless took it up as
The things we witnessed people doing, the
energy and creativity behind each effort, the pure
passion to prop the Gwendolyn Strong Foundation and
SMA on our collective shoulders and compete against
these much larger organizations to remain on the
leaderboard -- person by person, family by family,
company by company, organization by organization,
ask by ask, email by email, tweet by tweet, vote by
vote. Each of us refused to relent. And we know we
are only aware of a fraction of what occurred in
this movement. Take a look at this incredible list
(click here -
http://bit.ly/7jioKN) of celebrities, athletes,
musicians, organizations, publications, blogs, etc.
that threw their support
The Gwendolyn Strong Foundation doesn't have a fancy national headquarters or hundreds of chapters or a big marketing budget or a team of employees. No, we're just two parents in a house in Santa Barbara, California with two MacBook laptops caring for our terminally ill two-year-old daughter and fighting any way we can to save her life. But, in this Chase campaign the Gwendolyn Strong Foundation was much, much more than the three of us. It was also two parents in a house in New York. And three people in a house in Spain. And three people in a house in Ohio. And 25 people at a company in Mississippi. And one family in a house in Australia. And one person in a house in Texas. And five people in a house in Arizona. And two people in a house in the England. The list goes on and on. And together -- collectively -- UNITED -- relentlessly -- all of our amazing individual efforts and our enormous unwavering passion amassed into this wonderful grassroots effort.
We should all be so proud of ourselves. We have done something that has never been done before. We always knew this Chase Community Giving campaign was an incredible opportunity for SMA, but it has become so much more than we could have ever imagined. We are so very honored to have fought for this with you. Together, we have helped change the future of this cruel disease."
January 20, 2010
Happy New Year!
I am sorry that it has taken me so long to do an update. The people who have the software program to do my updates and post pictures both live out of state and have been super busy with their lives.
Erinne is excellent! Back to school Jan. 4th full time, like she never had major spine surgery the week before. She did pick up a nasty stomach bug that took her longer to recovery from than it did her surgery!
I've been asked to update her hockey schedule:
January 23rd, 1:30pm
Directions are posted on the first page of her website.
The following information is SUPER IMPORTANT to us and is TIME SENSITIVE -- just 48 hours left to vote! :I have a beautiful 12 yr old daughter, Erinne Rose, who is fighting this insidious disease. It has taken away her ability to walk with braces and a walker many, many years ago. It has taken her ability to raise her arms above her head. It has taken her ability to breathe without assistance. She wants to hug me, but she can't. Her arms are limp. She has difficulty feeding herself. SMA has left her with daily chronic pain. But SHE has NOT GIVEN UP.... She believes there is a cure on its way. SHE WANTS TO LIVE. She wants to attend the University of Michigan for college and then on to the Michigan State Vet school. She wants to drive a Mustang GT someday. But she can do NONE OF THIS WITHOUT YOUR HELP. PLEASE, PLEASE vote for SMA for a CURE.
This will only take a minute of your time. If you have a facebook account, click on the link below. Become a fan of Chase Community Giving. Vote for SMA/The Gwendolyn Strong Foundation (GSF) -- one of our research organizations. We are losing the opportunity to win the $1 million because we can't get enough of our friends and family to vote. But, we still have a chance to win $100,000 for research. We have tumbled from 3rd place to 7th. We need to get back in the top 6 in order to get the $100,000. THE CONTEST ENDS IN 48 HOURS. Please vote, and ask your friends to vote too.
If you don't have a facebook account, you can open one up quickly, vote and then close the account if you don't want to keep it open.
Are you my friend??? Are you a part of my family??? Do you care about Erinne & her disease - SMA? Then please help me ... I can't help but take it personally if you ignore my plead for help. SMA needs a cure!!! It is free to vote. It takes less than a minute to vote, then repost and ask all of your friends. This is my.child we are talking about ... the children of MANY of my friends!!! I would do it for you, you know I would ... www.voteforsma.com. We need MONEY to fund the cure and YOU can have a say in that! PLEASE, if you care about Erinne, take 30 seconds to vote for ERINNE'S CURE!!!
But please......VOTE..... for Erinne, and for all of her friends suffering and DYING from this disease. We have already lost so many friends. 1 in 40 adults carry the defective gene for this disease. Surely you have 40 friends/family members. AT LEAST one of them is carrying this gene. They could easily find themselves in my postion. They too, could be holding a limp child in their arms -- a child who wants to hug them, but because of SMA, cannot.
Suzanne & Erinne