HERE'S THE LATEST NEWS...

 

December 31, 2013

 

Disney Days 8-10 - Sea World & Epcot 

 

Erinne took the day off on Saturday to rest. I forgot to mention that on our last trip to Epcot, after the Star Wars simulator ride, during the transfer from their wheelchair to ours, Erinne's foot got stuck and she felt a pop/crack. I am pretty sure a bone in her ankle is broke. We have been icing it and Ace wrapping it but there isn't much more they can do for it since she doesn't bear weight at all on her legs/feet. On Sunday we went to Sea World were we took in a couple of shows. It was not much different than the other Shamu shows I've gone to in the past, but I enjoyed watching Erinne's reaction to it. The difference I did notice was that the trainers are no longer in the pool with the whales anymore, probably due to the death of a trainer a while back. On Monday we went back to Epcot and had dinner at Le Cellier (based on the Ratatouille movie.) Foot still bothering her a great deal. Thank goodness for pain meds that she is already on. I will have it looked at once we get back home. Tomorrow is Downtown Disney and Cirque de Soleil's La Nouba.

 

 

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December 30, 2013

 

Disney Day 7: Swim With The Dolphins Day!

 

Discovery Cove: WOW! WOW! WOW! This day was incredible! Discovery Cove is as beautiful as it was fun and relaxing all at the same time. I HIGHLY recommend you visit this next time you come to Orlando. Breakfast, lunch, snacks and even beer was included AND a free day at Sea World too! The only downer was the weather -- a cool and breezy 70 with rain. This was Erinne's first time in immersed in water with her trach and she seemed initially like she would be ok -- until she actually got in the water. Then she got panicky. We took her in the fresh water pool (85*) to get used to it and in preparation for our dolphin swim in 2 hours. Water never got in her trach, but that didn't seem to matter. We were in very shallow water and she was sitting on my lap but worked herself into a full blown panic attack. We took her back to the cabana and after an Ativan and a 1 ½ hour nap, she was resigned to the fact that she was going in the water with the dolphins. (It wasn't the dolphins she was afraid of. She has swam with dolphins before on our cruise 2 years ago. It was strictly the water that had her scared.) She had lots of time with the dolphin in shallow water, and even kissed one of them. She did not do the actual swim in deep water where you hold on to the dorsal fin and a flipper and the pull you across the pond. But I did and it was soo exciting! When our ⅓ hour was done, we had to get our sweatshirts on and wrap Erinne in a couple of blankets -- it was that cold. I swear we are going to be the only white, pale skinned people to go to Florida on vacation and come back without a tan. :(  We have lots of pictures on a cd (I couldn't exactly take pictures and tread water at the same time!) that I'll post when we get home.


Definitely recommend this place even over Disney World.
 

 

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December 26, 2013

Disney Days 5 and 6: Christmas Eve and Day

Erinne took her down day on Day 4, venturing out only to eat on the 24th. The 25th and 26th Were spent at Epcot. Erinne loved Epcot, which is why we returned for a second day. We weren't in the park for long though, as she was in pain sitting both days. I was itching to get back to Germany to relive some memories and taste some delicious food from when I lived there 1983-86. Oh well, maybe another day. Tomorrow is Swim with the Dolphins Day!! It is supposed to be 75 degrees and no rain so I hope that is indeed the case. Somehow we have to get a wet suit on this floppy young lady before she gets in with the dolphins. Should be interesting!

 

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December 24, 2013

Disney Day 3

Magic Kingdom: The best part was my birthday dinner in Cinderella's castle. The not so great part was all of the rides that Erinne could not go on, because she was required to transfer out of her wheelchair to one of theirs, which made her feel unsafe. She said the Magic Kingdom wasn't what she expected and she was disappointed. She asked for a down day tomorrow to catch up on her sleep, so that's the plan for now. Latte had an 'accident' which made things a little exciting (NOT). We had things cleaned up before they got there to do the cleaning. All they had to do was disinfect the area. I guess her tummy was a little upset.

 

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December 22, 2013

Disney Day 1

Arrived late last night at the magical world of Disney. The dog did great on the plane. Today is a catch up on sleep for Erinne. Then some pool time and a venture into Downtown Disney. Tomorrow: The Magic Kingdom to celebrate my birthday with Cinderella and dinner at her castle!!

 

 

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December 7, 2013

 
MY BAD!
 
 
I have been doing a terrible job keeping up on the journal. So much has happened; so much has changed. I look at the message below and I can see that I need to correct a few 'events'.  
 
Erinne didn't have sinus surgery. In an almost unheard of fashion, 6 weeks of antibiotics and a round of steroids, Erinne's sinus infection and swelling were able to clear up without any sucking and mucking around from surgery. She still needs to have the last surgery of the placement of cartilage under the skin of her nose to cover up the piece of metal from the facial surgery this past summer. That was supposed to be done Nov 26 but we lost our surgical date due to the sinus surgeon telling the maxillofacial surgeon that his surgery had to come first. They gave us a new date of Dec 13 but that wasn't good in case she had any complications --- and our vacation started the next week. So now the surgery has been moved to Valentine's Day -- February 14th. She has the following week off of school which will be good for healing. It is my understanding that the nose is not the painful part. It is where they harvest cartilage from her rib that is painful.
 
She loves school but it is still exhausting for her. Many days she comes home from school and is asleep by 3:30p and sleeps until wake up time the next AM (5am) Sometimes a 4-5 hour nap will due, but not often.
She seems to have something going on with her heart again. She has been having episodes of tachycardia (fast heartbeat) which is accompanied by elevated anxiety. She knows what's going on. She is sixteen and a half years old. She understands SMA and that there is a heart component to the disease. (Although there are only a few doctors here that recognize that.) So when her heart starts beating fast, she gets very nervous and upset. She has told me that she wants to be home when this happens because she is afraid that no one else will be able to save her except me. Powerful stuff. (She has also told me what she wishes she was born first so that she would have had more time with me. (Moved me to tears). She is such a loving, sweet girl.
After the first of the year I am going to take her to Columbus to Ohio State University to see a cardiologist that DOES agree there is a heart issue with SMA, and see what can be done, and where they are with the research.
 
We leave for Disney on the 21st -- just 13 days away! We are very excited to be someplace warm. I am most looking forward to her encounter with the dophins. I think that is what she is looking forward to the most too. We are hitting up all of Disney World, Universal Studios and Sea World. We will also be visiting a place called Give Kids The World, which is where we stayed when she visited Disney as a Wish Kid back in December 2000. I am excited to see what all she remembers from that trip. She does have some holes in her memory, because a couple of months after our trip she ended up in the hospital on life support and had been without oxygen (hypoxic) for a period of time. You can read about that time in her story (http://www.our-sma-angels.com/ErinneRose/story.html). 
 
Erinne is still playing hockey twice a month and loving it!
 
I'll try and update before we leave for Disney -- if I haven't lost my mind by then!

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October 10, 2013

 

 

Wrapping up Summer and Feet First into Fall!!


Fall started with such a bang that I forgot to update you! Erinne is doing "okay", relatively speaking. On the plus side, her face is BEEEAUTIFUL!! The final surgery to finish her nose will be November 26th, 2 days before Thanksgiving. Most kids stay 1 night; because Erinne is Erinne, she will stay 2-3 nights in the hospital.


Erinne loves school and is enjoying her junior year, She especially enjoys chemistry and advanced algebra. She went to her first Homecoming this year.

 

On the down side, poor Erinne has had a sinus infection for the past 36 days, which has made her feel miserable. A CT scan of her head showed severe sinusitis and a lot of stuff in the frontal cavity that isn't supposed to be there. We are seeing an adult sinus specialist on Wednesday. I suspect another surgery is in her future. Hoping it is possible to do a two-for-one on the 26th, if we go that route.

 

After all this child has been through this year, starting with her trach last January, she deserves a nice vacation. I am taking her to Disney World for Christmas. All of the plans have been made, flights booked, dinner reservations made and the packing list started. We definitely don't travel light. In fact, we have to take every machine we own except for her bed! Once Latte gets wind of a flight in her near future, she is not going to be happy with that. She has flown once and definitely did not care for the experience!

 

I'll keep you posted on her sinus experiences as things develop.

 

Oh, one bit of very good news --- if you know Erinne's BFF, Olivia (also 16 yrs, also SMA 2) is getting her trach this Friday! This has been a decision long in coming for Olivia and we know her health is going to improve so much once she starts breathing better. Erinne feels so much better since her trach.


Before I sign off, love, hugs and kisses to Claire. Try and take it easy and put your feet up when you can. We love and miss you very much! xoxoxox

 

 

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August 25, 2013


Wrapping Up Summer

 
Erinne managed to fight off that last bug on her own, with our home regime of treatments. She continues to recover from her surgery. We are also gearing up for school to start. Erinne has had about 10 follow up doctor's appointments these past 2 weeks --- all is well. She is still being followed closely by her surgeon and we have one more small surgery to fix a couple of things. No date for that yet.
 
She has registered for her classes and is looking forward to a great Junior year. She was only able to attend part-time for most of her sophomore because she felt terrible. We are optimistically thinking she should be able to handle full time now that her breathing is better, her nutrition has changed and she is sleeping better.
 
Erinne would like me to wish her sister Claire a Very Special Happy Birthday. Claire just turned 28 and is expecting her second child. We love and miss her so very, very much!
 
xoxoxoxo to all, but especially to Claire.
 

 

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August 1, 2013


AUGUST?!?!?!?!
 
So hard to believe it is here already! I don't know about you, but Erinne has spent most of her summer break recovering from her surgery. She looks GREAT and has a little swelling on the right side of her face. Part of her face is still a bit numb.  I'll take some pictures soon, I promise! She is looking forward to being able to eat again. Right now she is up to soft, mushy foods which doesn't appeal to her. She still has a little orthodontic left to be done, which should be finished by Christmas. I can't wait to see her smile without and hardware on it.

Erinne is sick again and fighting pseudmonas. She's not been out of bed in a week. She's back on antibiotics again. Her lung doctors put her on an inhaled antibiotic along with an oral one. If she is not better by Monday, then she has to go to the ED to be admitted. Think positive thoughts, ok? Thanks!!

 

 

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July 26, 2013


FINALLY.

Prayers were answered, while we were in the midst of 3 people calling 45 moving companies. The ICU bed arrived at 10:00pm. A few nicks in the walls later....exhausted Erinne was tucked into her new bed. We are blessed to have such a wonderful bed for her. I'm tired too. I'll worry about disassembling the old bed and cleaning up the living room tomorrow. Thanks for all of the words of encouragement and prayers. 

 

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July 25, 2013
I AM SO PISSED!!!!!!!!!!!!!!!!!

I finally found the ICU bed (Hill-ROM Sport) I wanted for Erinne and met with the gentlemen selling it today to give him the final payment. Meanwhile, back at home, Erinne's nurses set up Erinne's bed in the living room and took everything possible out of her bedroom so it would be ready for the new bed. The movers were scheduled to show up at 1:00p. Since the weren't on time, we left to head back home. The seller calls me before I even get back home and tells me the movers are there and they are refusing to move the bed because it's too heavy (500 lbs) it doesn't come apart, and it would have to be moved on its side, where there are electronic panels. The movers didn't even bother to call me! So I am home by this point and called (seriously) 13 movers and not a single one would touch the bed!! I called the moving company that Hill-ROM uses and they "don't deal" with patients -- just Hill-ROM. That's how they get paid. So I guess plan C is to call Hill-ROM and beg some more tomorrow and then contact the news stations tomorrow and see if they can help me. Then to top off my day, my son falls off the roof cleaning the gutters and somehow it is my fault because I didn't hear him yelling that the ladder fell and he had to jump off. I asked him here his cell phone was and he informed me it was in the garage because he didn't want it to get wet. And somehow all of this is my fault. I just want this day to be over!
 

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July 8, 2013

 
First Post Op Office Visit
 

ERINNE UPDATE!!!! Post Op Day # 16 -- We've had our first post op visit (besides the ER trip and admission a couple of weeks ago) with the surgeon and he told Erinne, "Wow -- you have A LOT of people in the hospital that know you and were pulling for you, and for me to do a very good job!"). They took out 40 staples from her scalp, a stitch and 2 VERY LONG stents holding her nostrils open (very gross looking) and 3 rubber bands holding her mouth closed. She was beautiful before, but she is GORGEOUS now! But this surgery was not about beauty; it was done because she could not breathe through her nose, and opened up previously sealed maxillary sinuses (which was causing pain) and her jaws did not allow her teeth to meet up. She is still swollen, especially on the right side, which will go down with time. We see the orthodontist next Monday to see what their plans are now that things have shifted. She has gone through a lot of pain to get this far and I am so proud of her!

 

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July 1, 2013 Monday

Back Home

Erinne was discharged late Saturday evening, after several rounds of IV antibiotics. The CT showed pockets of fluid on the right side of her face, but inconclusive as to what it was. Blood cultures were sent. The swelling went down enough that I felt better about taking her back home. So after 2 nights, we packed up and headed back home. Her swelling has gotten better over the past 2 days so I think we are over the hump. She got her hair washed -- staples and all -- tonight and that had to have felt better. The staples come out on Monday 7/8. She has stents or little tubes in her nose, holding open her nostrils and she is very anxious to get those out. Her face looks totally different -- different nose, different cheeks, different chin. It just amazes me. She is so beautiful. She'll have the braces on for a couple more months but everything should be finished by Christmas.

 

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Friday, June 28, 2013

Spoke Too Soon!

Erinne is back in the hospital, I'm sad to say. I brought her back on Thursday evening to the ED for asymmetrical facial swelling which concerned me greatly. They think that she either has cellulitis or an infection in her surgical site. A STAT CT scan was done this evening and I am waiting to hear of the findings. Please keep her in your continued prayers. With great thanks.

 

 

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June 26, 2013 Wednesday
 
Successful Surgery -- Thank You Jesus!!
 

Erinne had a very successful surgery! Dr Edwards did a magnificent job with the bones in Erinne's face. The procedure was long -- just under 7 hours. Dr. Edwards said he had quite an audience because he only sees 1-2 Le Forte II cases a year and those are usually from trauma. It is rare to be able to plan one out ahead of time. They showed us Erinne's skeleton head they made from all the moulds and measurements they took, and also a computer sketch that was made of the areas they would operate on with before and after pictures. WOW! What extensive changes they made!


Erinne was in the hospital from Friday - Tuesday. She required 2 blood transfusions of packed red blood cells. She lost 700 mls of blood during surgery and had a constant drip-drip from her nose. She seems to have stabilized so I am hoping for no more transfusions.
 
She sees her doctor on July 1st to get the staples out of her head, and has two more two week interval appointments after that. She's already going crazy from the lack of food (no eating for 2 weeks). She can only take in liquids until she sees her doc again and then he will determine her diet. Her mouth is elasticed shut (as opposed to wired shut) "I don't DO soup, Mom!"

I've posted pictures of each day on Facebook.
 
Erinne has had such a great attitude through all of this. I can't wait for the swelling to go down to see exactly what her her face looks like. Already I see that her lower jaw doesn't jut out like it did previously. Her underbite is gone; teeth are lined up perfectly.
 
I think it definitely was a very successful undertaking. Hopefully Erinne will feel that way too in a few weeks. All she is concerned about right now is getting back to playing hockey!
 
Thank you to all my prayer warriors for your continued prayers for Erinne and me, We couldn't have gotten through this without your prayers!
  
 

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June 19, 2013 6:15pm

 

Anxious and Nervous


36 hours until surgery. We are both very anxious and nervous. Had not to be when they tell me they usually only do 1-2 of these procedures a year. I know she is in God's Hands and will be okay, but right now, my nerves are getting the better of me. There are so many questions and so few answers because again, of the frequency that this surgery is done. I am reassured by the surgeon we have chosen, and we also got the anesthesiologist and CRNA that we requested so that gives me some peace. But I am still frazzled and nervous. Surgery is scheduled for the first case on Friday at 7:30am. We're to expect about a 5 hour procedure, with at least an hour of that positioning, getting an IV in, etc. <deep breathing>, <deep breathing> Wish I knew yoga. In case you missed it, this is a BIG facial reconstruction surgery to repair the severe mid face hypoplasia and upper jaw undergrowth/lower jaw overgrowth she has going on.


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Sunday, June 9, 2013

 

UPDATE ON ERINNE WILLIAM'S FUNDRAISING !!!!


Plymouth Canton Community Schools National Honor Society raised
$20,115.58 for her !!!!

We received this GENEROUS, KIND donation from Erinne's high school from the JS5K run they held in May. We're over half way there! Can you please help us with a small donation AND post this to your website? If everyone who reads this donates $20 (the price of a couple of lattes or dinner out) and posts it to their FB page, we'd be over the top and could order the bed before Erinne's surgery on June 21st! We sure would appreciate your generosity! 

 

Thanks xoxoxox

Click here to go to Erinne's GoFundMe Page

 


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June 8, 2013
 
School's out for summer!!!

 

Erinne finished school today, a few days early. She took her exams early so she didn't need to go next week. (I don't know who's idea that was, but I appreciated it!) Now the big job is to keep her healthy for the next 2 1/2 weeks, before her surgery in June 21st. She is becoming a little anxious about the surgery. I can't begin to imagine the thoughts going through her head, thinking about waking up with a new face. Eating has become more and more difficult for her because of the poor jaw alignment. She is constantly biting her tongue. Please pray for her peace of mind for the next two weeks, and for good health!



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May 19, 2013
Sweeeeet Sixteen!!!!


So hard to believe my baby is 16! It certainly hasn't been an easy journey for her, but she has shown everyone that she is one tough lady! She said tonight she enjoyed her birth-day and the friend party we had today. On her birthday we had to go in to school for her IEP (fun-fun-fun!), then went out to dinner where she ordered 2 lobster tails (but sadly, could only eat a tinybit because she has such difficulty chewing because of her jaw alignment) and then went shopping for her Beats headphones. Today (Sunday) we had her friend party at Lucky Strike Bowling Alley and Arcade. She had friends from school, hockey friends, a friend from camp and her cousin. She opted not to eat any of the food, again, because she can't chew very well anymore. (Surgery to fix this is scheduled for JUNE 21st.) The kids bowled 2 games and then had a swipe card to play in the arcade for an hour. I'm pretty sure everyone went home happy. I know Erinne did! 

She goes back to school tomorrow. She has been out for the past week, fighting a virus, likely from a kid (who was sick) who thought it would be funny to cough in her face. Yeah, really funny all right.

On this Thursday she has a 3D CT scan done of her head and moulds of her face made in preparation for her surgery. They will do a mock up of the surgery on the "head" they made so that they know what exactly needs to be done and what the outcome will look like. I am looking forward to seeing the mock up. Erinne will look like a new person!


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April 24, 2013 Wednesday

Bronchoscopy Day
 
Erinne had her first bronch today. The doctors take a camera, a light, sterile water and suction and go into her lungs to see what's what in there. What they found was a whole lot of stringy sludge in both lungs that didn't take kindly to being disrupted. They told me their suction kept getting clogged up with her sludge. They said they put in more water than they were able to suction out, so to expect lots of coughing and suctioning tonight. They also said she could run a fever and possibly end up with pneumonia as a side effect. Well, her temp is already 102.2. Gonna be a long night, but thank goodness we are at home! Prayers appreciated!


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April 14, 2013 Sunday

A New Problem

Not quite sure what is going on but when I am suctioning Erinne, a fair amount of fresh blood and little blood clots are coming up from her lungs and it is not coming from the trach itself. This has been going on for 5 days. Each day there has been more blood. I am wondering if it is from the .07% hypertonic saline that was prescribed for her as a breathing treatment. Could the hypertonic saline cause the lung tissue to bleed? She complains that the hypertonic saline burns her throat. Needless to say, I am calling her doctor in the AM.


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April 11, Thursday

Pneumonia/Pseudomonas 1 :  Erinne 0

We are still on the losing side of this bug. That "crud" I mentioned before (the dead white cells and dead pseudomonas cells) are stuck like glue to the bottom of her right lung and I can't get it out. She still is requiring oxygen while sleeping. We went back in to see the pulmonologist yesterday. The chest xray is improved, but still shows the crud sitting in the bottom of her lung. So Erinne was put on steroids, her vent settings were changed to higher numbers to help pop her left lung open. We are already doing CPT (chest percussion therapy). And, she is going to be scheduled for a bronchoscopy. A bronch will allow them to go into the lung and suck out the crud that is glued in there. We've gotta have this cleared up by April 30th because she has to be healthy 6 weeks prior to surgery, which is scheduled for June 21st.

PS. Don't forget to look at the April 6th entry for ways you can help Erinne and her school raise $$ to purchase her new hospital bed.


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April 6, 2013

A WAY YOU CAN HELP ERINNE

Erinne's high school, Plymouth, along with Canton and Salem high schools, are holding a 5k race/1 mile walk to benefit her medical needs (currently a desperate need for a specialized hospital bed). They are also helping 2 other families as well. 
Here is a link describing it and a link to Erinne's video. The Facebook page is SJ5K 2013.

I am hoping that those who read this (especially my Botsford Hospital friends and Bright Horizons friends and my high school friends) will want to participate in some way to support this wonderful opportunity. You can come and run/walk, or you can remain in the comfort of your own home and make a donation. Here is a link to the form to do both.

Registration goes right up until race day (but to get a t-shirt, you have to register by 4/11/13).

It would mean A LOT to know we have many supporters near and far, behind us on race day.

♥ ♥ I feel the love already! ♥ ♥ 


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April 5, 2013

FINALLY -- Some good news

The crud (that's a medical term, btw) that is sitting in the bottom of Erinne's lung is a bunch of dead white cells and dead pseudomonas. The good news is that the antibiotic killed off the 3 types of pseudomonas that she had growing. The bad news is that we still have to pull it all out. I can handle that kind of bad news. :) She has to stay on her vent 24/7 to blow the right lung open and allow is to cough and suction it out and continue with her 9 daily breathing treatments until her next dr appt in May. Erinne is a little testy about the constant ventilator time, but she is going along with it. She is on an oral antibiotic to wipe out any remaining bugs. All in all, a much better outcome than what it could have been. Praise God!


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April 2, 2013

Pneumonia #22 -- YIKES!!!

Erinne just didn't seem to be getting better on her TOBI inhaled antibiotics so I took her back to the pulmonologist today for a recheck. Well, she has pneumonia #22. I took a sputum specimen in for culture. We can't start on antibiotics until we know what the current bug is sensitive to. Hopefully not an IV antibiotic that she has to be hospitalized for. :( I'll know more on Thursday. In the meantime she is on her ventilator 24/7 except for hockey on Saturday (that was what she negotiated). We've had to add another medication to her breathing treatment routine. Erinne also has been needing 3 liters of oxygen when she is sleeping. She is not a happy camper right now. This was not how she expected to spend her spring break. This infection seems to have taken quite a stronghold. Please pray that this infection can be managed at home and she not have to be hospitalized. She needs to have 6 clean weeks before her June 21st surgery so we have our work cut out for us. 

One final note -- one of her hockey friends, Anthony Nelson, died unexpectedly on Easter. His dad is Erinne's travel hockey coach. We stopped by the funeral home today for visitation. Such a sad, sad day.


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March 7, 2013


Erinne's Wristband Spotted on TV!!


Mike Babcock, Coach of the Detroit Red Wings, was wearing Erinne's wristband during the Edmonton game tonight!!!!! I saw it on TV!!!! Thank You Mike!!!


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March 6, 2013


Orthopaedic Doctor Visit


We saw the ortho surgeon yesterday who believes Erinne's pain is from the IT ligament's (which was released or cut in 2001) scar tissue which likely ruptured or tore when I sat her up in bed. No other treatment other than what we are already doing (anti-inflammatories, heat (she can't tolerate ice), Valium (for the muscle spasms) and pain meds. We'll follow up with her next month. They x-rayed her spine and all of the hardware is right where it is supposed to be. It is just going to take time for this to heal. So disappointing because she had finally stopped having back pain and stopped taking her pain meds after her trach surgery. Now we're back to square one again.

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Tuesday, February 26, 2013
 
PAIN!

Erinne has had a great deal of back pain all day today. When I sat her up in bed this AM, something went *pop* and she was in severe pain. Despite pain meds, the pain was significant enough that she had to come home from school early and went straight to bed. The pain continued through bedtime. She questioned on whether a piece of hardware in her back might have cracked or broke. The thought crossed my mind too. I guess we'll have to see what tomorrow brings....my poor baby....

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February 16, 2013

 

Second Week Back At School: 

Erinne continues to do well at school, despite picking up a sinus infection (which doesn't really surprise me, given that because of the facial bone displacement, her sinus cavities are partially blocked.) She attended 1 full day; all the rest have been half days. She is a little more tired than usual, but again, I attribute it to the sinus infection. One of her doctors suggested that we wean her off her migraine medicines, which I started to do, only to have her migraines return. So, we'll stop that for now. She is off for mid-winter break this next week so I am sure she'll get plenty of rest and kick the sinus infection's butt! The past 2 week saw her play 2 hockey games in her league and also took in a Red Wing's game. She's getting her hockey fix for sure!

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Friday, February 1st, 2013

First Week Home:

Erinne is a totally new person. Energy. Energy, Energy. (Certainly more than me!) Her breathing is stronger. Her voice louder and clearer. She is sleeping normally for the first time in over a year. And did I mention how much energy she has? The doctors this week have commented on how good her color is and how bright her eyes are. The pediatrician asked, "Should we have done this sooner?" She understood my resistance to the trach. I realize hindsight is 20/20 but I do wish I would have done this sooner, as I watched her slowly get weaker and more tired.

To the type 2 parents who are seeing their child get weaker or more tired, don't just attribute it to the effects of SMA, please consider a trach. Erinne didn't want one before it was done, but 3 days afterwards she said she was happy she had it.

She starts back to school on Monday, 2/4, part time. She is telling everyone she is going back full time right away. I think she will go back to school full time sooner than I expected.

I am so happy with how well things worked out. Thank you Jesus! 

To the other SMA parents struggling with this decision, don't struggle. Just do it.

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Thursday, January 24th, 2013

"WE'RE HOME!!! 

It's chaos -- there are suitcases and boxes of equipment and supplies everywhere, but we're HOME!! Groucho was so wired for sound, he didn't know who he was happiest to see -- Erinne, Latte or me. He has since settled down and I am looking forward to snuggling him tonight. The 3 weeks were rough on him. Erinne took a nap in the middle of having 2 vendors hooking up equipment. (And guess what, SMA families --- I got the new CoughAssist!!!) The nursing supervisor came by and formally opened the case. Our first nurse arrives at 11pm tonight. I'll be up with her for part of the night since she does not know Erinne or her machines. But I can take a nap tomorrow when Erinne does. Gotta run -- more tomorrow."

 

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Tuesday, January 22th, 2013

Post Op Day 18: 

SIGH! We are still here. Discharge date was Monday, then Wednesday and now, hopefully, Thursday. If not, then we will have to wait till Monday again because they don't do trach discharges on Fridays, Saturdays or Sundays. Waiting on the paperwork from the state, as usual, which is paying for the nursing care. The good thing is I will have 21 hours of care until she goes back to school. Now having 21 hours of care on paper is one thing. Having it filled by actual, live nurses is a whole 'nuther problem. Erinne continues to do very well. She is missing her puppy Groucho very much. I worry about whether he is getting fed enough and is going outside enough and if he's wearing his coat. (Its bloody cold here). When I've gone home to check on him, he wasn't. Erinne complains of boredom so she naps a lot. It is too cold to journey outside of the hospital complex and she is tired of eating mac-n-cheese and southwest rice (the only thing she eats on the menu). We don't like to venture out too far from the cough machine and we haven't gotten our portable one (fingers crossed) yet! Special thanks go out to Stacey Marino Troxtel for bringing me dinner last week and a gift card for Erinne and to Mott's CRNA Jan Kinney for bring Erinne teen magazines to read and posters to decorate her room. And as always, Olivia Werstein and Cynthia Werstein for your visits, food and companionship!

 

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Sunday, January 20th, 2013

Post Op Day 16: 

We got a "get out of jail free pass" and Erinne's dad took us out to dinner tonight to Mongolian Grill. She was very happy and did well. Dinner wore her out and we finished quickly and headed back (drove) to the hospital. It was a biting, bitter cold which didn't help her feel any better! We won't be going home tomorrow; Wednesday is the earliest we can expect. We had wonderful visits this weekend from Olivia & Cynthia Werstein, Kris Cueter and Liz Orvis. Mary Colby Roderique gave Latte some very much needed walking time. We missed visits from Diane Budja, Julie Newland and Becky D'agostino because we were out on our passes this past week. So sorry we missed you ladies! Friends who were up on the floor and already went home were Ben Grindle (Tj Grindle) and Emma Leonard (Lisa Murphy Leonard). Tomorrow (Monday) I meet with the nursing supervisor from the agency we are going with and supposedly Monday afternoon they will tell me if they can provide staffing for us. Keep your fingers crossed!!

 

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Friday, January 15th, 2013

Post Op day 13: 

We successfully passed the "24 hour test" to see if we (Kevin and I) could take care of Erinne without nursing's help. (duh). Kevin did really well changing her Trach for a 3rd time. He coughs and suctions her like a pro! We went home again for a couple of hours and Erinne enjoyed that. Kevin had to spend the night with me in the hospital...with only I cot for the 2 of us. so we took turns sleeping. But that wasn't the worst part. THE WORST part by far was learning that my son had horrible stinky shoes that were enough to gag you!! I almost asked him if he had moss or something growing on the bottom of his feet! In this small room it was eye-watering!

So now we are supposed to be discharged on Monday and it is NOT looking like we'll be able to go home then after all. Nursing is still not set up and we can't go home until it is. I'm going to talk to the agency again and see if they can move a little faster on this. We are more than ready to go home.

 

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Tuesday, January 15th, 2013

Post Op Day 11:

Today was our "12 hour pass day". That means that the medical staff would not be assisting us (they aren't really anyway -- we are pretty self sufficient. Erinne and I have a system or routine -- just the 2 of us) and we could leave the hospital WITH all of our emergency equipment. Kevin had to be a part of the 12 hour pass as he is my back up person. We went home for a couple of hours so that Erinne could see all her babies (pets) and take a nap in her own bed. Kevin had to change Erinne's trach twice today which is a bit unnerving if you are a non-medical person (or an SMA parent). He did well with the trach change, and is doing great on suctioning and coughing her. Our next big day is Thursday and we will have a 24 hour pass. That one really feels like a graded event that we'd better pass, or else....what? I won't be able to take my daughter home, I guess. But we'll do fine. We are supposed to go home on Monday 1/21 but I have a sneaking suspicion that nursing isn't going to be ready to go on Monday and we will be stuck here for who knows how long, Erinne's voice sounds better each day and she actually said she is happy she got the trach! Her sleep is phenomenal -- she never wakes up during the night anymore and wakes up feeling well-rested. We know she's gotten REM sleep because she is dreaming. What a relief!

 

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Monday, January 14th, 2013  

Cruising Right Along!!

 

Erinne is doing, "remarkably well" according to her doctors. She is progressing much faster that the normal person does, going through this type of procedure. There has been some pain (ok, a fair amount of pain) in the process, but she has handled it like a trooper -- tough girl that she is!

Erinne has adjusted to speaking around her trach very well, and her voice is a little stronger than it used to be. Those who have been around her know how weak and breathy her voice used to be. Speech therapy will be working with her to help her make the most of her lung power,

Other than that, we are going stir crazy here, bouncing off the 4 walls. Tired of hospital food too. Still shooting for a release date of Jan 21st, if (home) nursing is in place. We miss our beds and the puppy, Groucho!

 

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Wednesday, January 9th, 2013


"Just sit, sit, sit, SIT" (From Dr. Seuss -- do  you remember which one? "The Cat in the Hat")

Well, that's what we're doing -- just sitting, or in my case, standing, to endless suctioning/coughing sessions. Erinne is doing little better each day and is talking a little more each day. Today she visited the gift shop and the kids' activity room. We will be here until January 21st -- lots of training to be learned! Going a little stir crazy right now.

If you have Facebook account I usually update on Erinne daily and post pictures. You can find me under Suzanne Budenaers Yopek Williams.

 

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Friday, January 4th, 2013


BIG DAY!!

 

Erinne had her trach surgery today. She is currently in the pediatric ICU (PICU) at Mott Children's Hospital in  Ann Arbor. Coming out of the anesthesia was a little tough this time.

      ~ Update: Sunday January 6th, 2013 ~

Sorry, I didn't get to finish that last post. Things have been crazy busy. I have so much to learn! The palliative care doc came to see her and reminded hèr that she needn't suffer stocially from the pain and that there were plenty of pain meds available to keep her comfortable. She promised that she'd not wait so long to ask for pain meds.

The big trach change by the docs is Monday, at which time she will be able to get out of bed and move around. Then my training begins and I get to know everything there is to know about a trach. Kevin will need to come in and be trained as well as several friends and her nurse from school. Monday will also bring a swallow study to make sure she can still eat! More later.

God bless......

 


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Tuesday, January 1, 2013


HAPPY NEW YEAR to you!

Scientists and researchers are oh-so-close to a cure for SMA. May THIS be the Year of the Cure!

Erinne is doing quite well. Lungs are clear. Now she is just building her stamina back up. We have to go to the hospital on Wednesday so they can check her lungs before they give the, final go ahead for surgery on Friday.
 
Erinne has had a sleepover with her cousins Rachel and Madeleine last week and then friends Melissa and Jessie came over for a visit on Saturday. They have all helped put a smile on her face. We're going to try and squeeze in a couple more friend visits before surgery on Friday.

Did you see the new picture on the top of the first page? That is my favorite picture and that saying is SO true of Erinne.  

Please pray for continued good health for Erinne and guidance for the doctors during the surgery and strength for Erinne during her recovery.