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January 11, 2014

I know it's been a while....

With life settling into a "normal" rhythm now that we are more than a year post-transplant, I haven't been updating the blog.  If you would still like short updates on Anna and how she is doing, you can check out our Facebook page, http://www.facebook.com/OurTransplantJourney

Thank you so much for all of the support you have given us over the past few years!
May 22, 2013

An Awesome Check-Up!

On Monday, Anna had her first clinic appointment with the transplant clinic since we came home in November.

We made the long drive out to Pittsburgh on Sunday.  The highlights of the road trip out were cute soldiers (for Anna)



and passing the trucks carrying Eric Church's concert gear.




Since the Ohio Turnpike seems to go on forever, we were thankful when when we finally got to Pennsylvania.




We relaxed at the hotel and ate a really good restaurant called Smokey Bones that evening.

Bright and early on Monday we drove into the city, to Children's Hospital.  Oh my gosh... the traffic.



We were at a standstill when I took this picture.  This kind of traffic makes me so thankful we live in a relatively small town!

Anna wore her new Antonio Brown jersey as a lucky charm.  She smiled a fake smile for this picture because we were waiting for bloodwork and she was nervous.  


Her appointment went very well!  She got through her blood draw like a champ.  We met with Dr. Bond, one of the surgeons who performed her surgery, and he said she looks amazing and healthy.  We were also saw Anna's coordinator, Pam.  We love her, and were so happy to see her again.  

Her appointment was finished by mid-morning, so we headed downtown to explore The Strip District. 


We went to Pennsylvania Macaroni Company, which is such a unique store.




Another store I loved was Grandpa Joe's Candy Shop.  They had all sorts of vintage candy, like what I grew up with - candy cigarettes, wax lips, etc.  They also had delicious fudge. We then ate lunch at DeLuca's, which has been featured on Man Vs. Food. They are known for their breakfasts.  I had the caramel apple crepe - soooo good.  All of that walking and shopping wore us out, so we all crashed and napped when we got back to the hotel! We are going to try to explore parts of Pittsburgh on each clinic visit, so it's more like a mini-vacation than just a doctor's appointment.

I got the last of her bloodwork results this morning, and everything looks great.  She can switch to monthly labs, and we don't need to head back to clinic til September or October!


May 13, 2013

Doors opening

Lately, Anna has had opportunities become available to her that would have been difficult to agree to if she had not had her transplant.

Her CI classroom is going for an overnight trip to Mackinac Island during the first week of June.  If she was still on the waiting list, we would not have been able to let her go because it would be too far from home, and where we would be flying to Pittsburgh from.  If she had not been listed for the transplant, we would have to pack her formula and low protein food, which would presented additional challenges for her teacher and chaperones.  Now, we just need to be sure she has her medication and that her teacher understands that the dosage times are crucial.

Just a few days before this trip, she's competing with her teammates from Area 30 at Special Olympics of Michigan's Summer State Games.  The last time she did, she did not stay in the dorm with the rest of the athletes, because there was so little food provided that she was able to eat with her restricted diet.  Now she can enjoy the entire experience!

Situations like these remind me of how much MSUD controlled our lives, and reinforces our decision to pursue the transplant. 
April 13, 2013

Another Step Toward Our New Normal

When we got Anna's transplant call, she was just a few weeks into the Special Olympics soccer season.  She was disappointed she had to miss the rest of the season and being able to attend the State Soccer Games.  Today she had her first track practice of the season.  She was so happy to be able to see her friends again, along with her coaches and the volunteers. 

She hasn't really been physically active since the transplant.  Her CI class in school has started going to a local fitness center thanks to a grant they had received, but she has only had one session of exercise before this practice.  She tired out faster than she normally would today at practice, so I see we're going to have to ease into this a little bit slower than usual.  Thankfully with Special Olympics, it's ok for her to go at her pace.  As their motto goes, if she does not win, let her be brave in the attempt!
March 30, 2013

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March 8, 2013

Friends who see beyond the labels

As a parent, when someone shows kindness to your child, it makes your heart happy.  When your child is special needs, your heart swells with joy.  The joy I feel when someone sees beyond Anna's disability and goes above and beyond to help her feel unique is indescribable.

Yesterday Anna was able to go on-air with Angie Evans, a DJ at WCFX.  We have been able to do this a few times over the past 3 years, and Anna is always so excited to do it.  The fact that she is able to be on the radio is secondary to how she feels while she is there.  Through her kindness and enthusiasm, Angie makes Anna feel like a princess for the day for those thirty minutes.  Her speech impairment is forgotten, and any self-consciousness goes out the window.  Clint James, another DJ at the radio station has been able to learn about Anna through Angie, and also extends the same kindness. A ordinary hug made Anna's day - no, it made her week, maybe month!

I am so thankful for friends like them, who see Anna as the funny, silly, beautiful girl she is, rather than just Anna the MSUD or transplant girl. 

February 27, 2013

School Blues

Kids often say they hate school, and do not necessarily mean it.  Unfortunately, I'm beginning that realize that Anna probably is being truthful when she says so.

This school year has undoubtedly been a struggle for her.  Starting high school is a significant change for anyone.  She was only in school for two and a half weeks when  we got the transplant call, which was barely enough time to learn her locker combination.  Then she was out of school until January.  Only a few weeks later she missed a week of school due to being neutropenic.  She has been out of school more than she has been in.

She has never able to find her niche.  When she went back in January, all of the other ninth graders had been able to settle in.  She was essentially reliving her first day again.  She also had several months of not needing to follow a schedule, and even with the tutoring sessions in Pittsburgh and the homebound services she received, she was not doing the amount of academic work she is now.

Then there's the social aspect.  Even though she is no longer following a specific diet, she still feels like the odd person out.  She is not sure exactly where she fits in yet, and for a fifteen year old, that is huge.

Thankfully she has fantastic teachers, and a couple of close friends to help her through this.  I'm praying she will not need to miss more school, and she will be able to find her way soon.
February 14, 2013

Happy National Donor Day

Happy Valentines Day!

Today isn't just Valentines Day though, but also National Donor Day.



I wish I could send a Valentine to Anna's donor's family.  They will always be loved and close to our hearts, even if they always remain anonymous.

I hope that today, if you haven't already, you would consider registering to be an organ donor.  Saving someone's life someday would be the greatest Valentine you could give to anyone.

Click here to connect with your state's donor registry.
February 10, 2013

Come on, little neutrophils, grow!

Please pray, cross your fingers, and wish on a star that Anna's ANC count is finally back up in normal range.  I neglected updating earlier in the week, but her labs had shown that her ANC count had actually gone down further, not up.  She had to do another round of Neupogen, with the dosage increased.  This meant two injections each time instead of one, and for a girl who hates needles, that was NOT fun.  She has bloodwork done again on Tuesday, and we really hope to have good results.

Since she's neutropenic, she's missed quite a bit of school, and since she can't go anywhere else, cabin fever is setting in.  Big time.  You don't realized how much you miss the freedom to go to the store or out to eat until you don't have it anymore. 
February 1, 2013

living in our self-imposed bubble again

Earlier this week, Anna had routine labs done.  Everything looked great - except her ANC level. She had this happen back at the end of November, too.  So, unfortunately, she needs three days of Neupogen.  She hates that it is administered subcutaneously, and we hate that even with our insurance, each injection costs around $60.  Hopefully three doses will be enough to stimulate neutrophil growth. 

Until her ANC level goes back up, we need to keep her home from school, which she doesn't mind at all.  Going out to a restaurant is out too, though, so our plans for tomorrow night are postponed (it's my birthday tomorrow, and we had plans to meet family for dinner).  Cabin fever will likely set in soon.
January 23, 2013

The post I've put off writing...

I've had a post almost written for over a week now, but I've been putting off writing it.  Writing means thinking, and you know how there are some subjects you'd rather not face, or think about?  I want to be honest, though,  and write about not only the successes, but the fears.  So, here I face those fears.

Last week we had Anna's IEP.  Overall, it went well.  Nothing really changed, although I did request that her future absences due to illness or anything related to post-transplant care not count against her.

The part of the IEP that I've come to dread is the progress report.  I have had to resolve myself to the fact that Anna's reached a point where we probably won't see a lot of progression anymore.  Her academic skills, particularly in reading and mathematics, will never progress past a third grade level. She talks about going to college - I'm not hopeful that that will actually be possible.

For the first time, life after high school was discussed, including guardianship, which I was not familiar with.  When Anna turns 18, we can petition the court for guardianship.  That way, we will still be able to legally protect her when it comes to finances, medical care, etc.

This brought up the questions that keep me up at night now.  Will she ever be able to  be truly independent?  Will she be able to move out?  Will she be able to hold down a good paying job?  She dreams of being a wife and mother - is that possible?

When I'm doubtful, how much of that is pessimism, and how much of that is me being realistic?

I wish I knew.
January 9, 2013

IEP nerves

We have Anna's IEP tomorrow morning.   We have had IEP's since she was in preschool, and something similar when she had early childhood intervention services when she was a baby, so I really should be used to this.  Nevertheless, I'm nervous. 

I think about the fact that we only have 3 1/2 years until she graduates, and I panic.  What if we make a wrong decision, and her future is negatively affected?  There's usually at least one person whose comments after the fact will leave me second guessing what I believe is best. 

I just want what's best for Anna, even if I'm not always 100% sure what that is 100% of the time.
January 4, 2013

Easing back into real life

Yesterday Anna went back to school, which coincided with the rest of the students returning from winter break.  This was her first day back since September 20th, and she was really anxious.  She had only had a couple of weeks of 9th grade before we got the call, and now she was starting all over again. 

Thankfully, she had a good day.  Although for separate subjects, she's in a cognitively impaired classroom with the same teacher for the majority of the day.  She's the same teacher who came to the house for her homebound services, so she know where Anna is at right now.  In her general education class, her teacher is a really good friend of the family, so she is very fortunate in that regard, too.  Coming back in the middle of a trimester would be difficult otherwise. 

We decided to follow the advice to have her only go for a half day the first few days to get her used to the schedule again, and that turned out to be a good call. She took a three hour nap in the afternoon! 

I am thankful that we are starting to get back on a schedule of sorts.  We need that after several months of Saturdays!
December 30, 2012

A Look Back Through 2012

What a year!!

Me, Maria and Anna at my birthday dinner


Anna and her great grandma on her 93rd birthday


Spring thaw on Chippewa River


Jane Goodall


Cotton candy at Shepherd Maple Syrup Festival



Anna and Brittany before the Hot Chelle Rae concert

Miracle... rest in peace...
Richard and Rebekah's wedding
Potter Park Zoo for Father's Day



Tristyn and Ryan's wedding








Great Lakes Loons game

15th birthday


Wish A Mile



















my knee surgery