Our Transplant Journey

Wordless Wednesday - Red Solo Cup

2012-02-01T08:58:00.000-05:00

RARE Project Blog Hop

2012-01-30T00:01:00.009-05:00

Chances are, before you met Anna or stumbled across this blog, you had never heard of MSUD. We hadn't either, and it's not surprising, as it's what is considered a rare disease. Current statistics estimate that only 1 in 180,000 babies are born with MSUD.

Living with a rare disease is difficult. There is very little understanding, both from the general public and the medical community. Imagine having to explain your disorder and its effects several times a day, every day, for the rest of your life.

Global Genes, through the RARE project, is working to bring awareness to rare diseases. They have declared February 29th World Rare Disease Day.

This is 30 days from now, and the number 30 is significant - 30% of children with rare disease die by their 5th birthday.

More statistics:

An estimated 350 million people are affected by rare diseases worldwide.
1 in 10 Americans is affected by rare disease. That's over 30 million people. 30 million Americans is more than the total number of people living worldwide with cancer (28 million according to the Livestrong Foundation).
There are more than 7000 rare diseases with some affecting less than 100 people. 75% of rare diseases affect children.
Almost 80% of rare diseases are genetic in origin.
These rare diseases are chronic, life threatening, and FATAL. Only 5% of these diseases have any kind of treatment.
Over 50% of rare diseases have no foundations, advocacy groups, or community support.

Surprising statistics, aren't they?

But you can take action!

Help Unite 1 Million For Rare on the Global Genes Project Facebook page so that we can increase awareness to the rare disease community.
Wear That You Care (using jeans to call attention to genes that can cause rare disease) on World Rare Disease Day and encourage others to do so too. Include your schools, sports teams, places of worship, friends, family, and coworkers! Share your photos and Facebook and tag Global Genes Project.
Donate a bracelet to the 7000 Bracelets for Hope campaign and bring hope to a child/family living with rare diseases.
Are you living with rare? Sign up to receive one of the 7000 Bracelets via the Global Genes website and also join the R.A.R.E network.

I also ask that you support the other bloggers who are blogging today to raise awareness of World Rare Disease Day.

We're in the newspaper, thanks to YOU!

2012-01-29T08:17:00.002-05:00

We are featured in an article in today's Morning Sun! Every encouraging blog comment and twitter connection over the past 2 years has meant to the world to me, Lance, and Anna. It sounds so cliche, I know, but this blog wouldn't be where it is without you. So thank you!

She didn't make the team

2012-01-27T05:09:00.000-05:00

My heart fell when Anna walked out to the car after volleyball tryouts shaking her head. She didn't make the team.

I'm not surprised, as I know she's not as graceful or athletic as the other girls, but I had still hoped she might make it.

I am so, so proud of how she is handling it. She cried a little bit, but then she was ok. She's even talking about going out for track in the spring. Not too long ago, this would have completely devastated her. My little girl is growing up.

First transplants, now hair cuts? More special needs discrimination...

2012-01-26T11:39:00.001-05:00

Earlier this month I wrote about a little girl, who happens to be mentally impaired, being refused a life saving kidney transplant. The most recent incident of discrimiation against a mentally impaired person that I have become aware of happened locally, and for an ordinary service, but is also very disappointing.

Our local newspaper, The Morning Sun, publishes a Sound Off column. In Wednesday's edition, a call was published that stated that a mentally impaired adult had been refused at our local SmartStyle salon, which is inside our WalMart store. Calls were made by a fellow special needs parent to the salon, and it was confirmed that is their policy, that they can refuse someone with special needs.

I'm having a difficult time wrapping my head around this. A child can be a challenge to give a haircut to - do they also refuse children? Would they refuse someone who just appeared to be a difficult customer, since they judged on appearance alone that this special needs gentleman would be too difficult to give a haircut to?

Simply put, this is wrong, and it is discrimination. A special needs child or adult should be able to do something as simple as getting a haircut without being made to feel like he or she is less of a human being.

If you agree with me, I ask that you help me take action. The customer service contact form for SmartStyle is here. Ask them about their policy regarding refusing their services to the special needs community. If you do receive a reply, please comment here and keep me (and others) up to date. Thank you!

tryouts update

2012-01-26T10:19:00.000-05:00

Anna has the third night of volleyball team tryouts tonight. I'm not sure if she will find out if she's made it tonight, or tomorrow. After all of this, I really hope she makes it!

She's had fun trying out, and has said she's learned a lot about the proper form, and that's the important part. She does have one nasty bruise on one of her wrists! I'm not surprised her wrists hurt, after having broken both of them a few years ago. If she makes the team, I'm guessing she may need to wear braces on them?

But, I'm jumping ahead of myself. I'll just keep my fingers and toes crossed until we find out for sure!

(almost) Wordless Wednesday - Androidify

2012-01-25T05:07:00.000-05:00

Thank you to Teala at Earth To Teala for making me aware of the Androidify app!

Anna

Lance

Music Monday - Good Feeling

2012-01-23T06:02:00.000-05:00

Today's Music Monday song is another that both Anna and I love. We saw Flo Rida when he performed at Lizard Fair (I'm sure, no matter where you live, you heard Anna screaming when Big Time Rush performed), she she always keeps an eye out to see if that concert's included in the live show snippets. I like the song because, well, it's a feel good song.

snow day

2012-01-23T05:18:00.000-05:00

We have a snow day today, I'm presuming because of icy roads. There was a freezing rain advisory overnight. I woke up at 4:30 to a thunderstorm and 40 degree temps outside, but the roads must still be ice covered out in the country? I don't think she's had a full week of school since they came back from Christmas break.

So, those good thoughts, prayers, and crossed fingers and toes for the volleyball tryouts can be postponed until tomorrow. At least, I HOPE she's in school tomorrow!

asking for prayers and crossed fingers tomorrow!

2012-01-22T15:27:00.000-05:00

Anna is trying out for her school's volleyball team tomorrow!

This decision came out of the blue. I knew she liked playing it in her P.E. class. I believe she expressed interest in it, and her teacher encouraged her to go for it, and she's doing just that!

There are 45 girls trying out for 24 positions, so the odds aren't in her favor to make the team. I've talked with her about this, and she seems to be prepared for being disappointed in the event that happens.

I am so incredibly proud of her for trying out! She isn't letting her disability get in the way of going after something she wants. Even if she doesn't make the team, she's already a winner in my eyes.

She could use the extra prayers, good thoughts, etc. tomorrow afternoon, though!

2 years waiting...

2012-01-22T08:00:00.001-05:00

Today marks an anniversary I had hope we wouldn't reach. As of today, Anna has been waiting for two years for her liver transplant. I knew that we would probably have a long wait.... just not this long.

Anna gets frustrated, and I don't blame her. Our life seems to be in this limbo while we're waiting.

Yet when I think about the impending call, I still feel panicked. I would like to believe that I'm prepared, emotionally, for when the time comes. Can I really be prepared though?

Wordless Wednesday - first snowfall

2012-01-18T20:23:00.002-05:00

breathing a sigh of relief!

2012-01-18T20:22:00.000-05:00

Another IEP meeting done - whew!

I feel confident about what we discussed at the meeting. Her teacher was able to answer some of my questions and address my concerns about the future. Over the next few months we'll be able to tour the high school and tech center, and meet with the high school's MCI (Mildly Cognitively Impaired) teacher.

Anna's teacher did confirm what I have been suspecting but not wanting to admit to myself - Anna may not necessarily be college bound after high school. I'm ... ok with this. Of course, as a parent, I have the dream that she will go to college and get a degree. Realistically? I don't know. She did agree that, since Anna learns best hands on, the tech center will likely be a good fit for her.

We did get encouraging news, too. She's making progress in both her reading and math, which makes me very happy! We are hoping that she will be at a 4th grade level in both by the end of 8th grade.

I was very impressed that the middle school principal took an active part in the IEP. He asked Anna what her concerns were about heading into high school, as well as ours.

I know that my anxiety about the future isn't going to completely disappear. I'm a mom, after all. I do feel a little bit more reassured now though.

Dear Old Man Winter ... I really don't like you

2012-01-17T11:19:00.000-05:00

Today is a snow day, which makes for a 6 day weekend. Our school district canceled school last Thursday and Friday because of a Norovirus outbreak in one of the elementary schools, then we didn't have school yesterday because of Martin Luther King Jr. Day. Now there's freezing rain coming down, which is changing to snow at some point in the afternoon. It's not looking good that we will have school tomorrow. We NEED to have school tomorrow. Anna's IEP is tomorrow, and I really don't want to have to reschedule it. Then there's the fact that cabin fever is setting in and Anna and I are starting to drive each other crazy. If you hear a plaintive wail tomorrow early tomorrow morning, that will just be me, checking the school's website to see if there is school or not.

Music Monday - Enter Sandman

2012-01-16T06:38:00.001-05:00

Every Monday is Dose of Happy Monday at Band Back Together - go check out what makes other people happy too!

Music is my escape. If I'm feeling depressed or upset about something, I put it on and crank it up. Metallica's music has helped me through a lot of dark times. I first started listening to Metallica when I was pregnant, almost like it was a pregnancy craving, and I've loved them ever since. They are definitely my dose of happy!

This is the song I will listen to before Anna's IEP on Wednesday, because it never fails to get my heart pumping!

Need your input!

2012-01-14T16:29:00.000-05:00

I am in the process of putting together a transplant recovery wish list on Amazon and we are a little stumped. So, I'm turning to my readers! What would you want to have with you while recovering from major surgery? It can be anything, just comment below with your ideas! Thanks!

my heart is heavy for another transplant family

2012-01-13T18:00:00.000-05:00

As readers of my blog and those who know us personally know, Anna has cognitive impairments due to the brain damage caused by MSUD. This has meant speech, occupational, and physical therapy over the years, and placement in a special education classroom. But did you know that it could keep her from being approved for a liver transplant?

Please go read this post: Brick Walls

This is sickening. My hands are shaking. Why should a child be denied a chance to live because of mental impairment? What year is this again?

IEP anxiety

2012-01-12T13:43:00.002-05:00

Anna's annual IEP is next week, and I'm already very nervous about it.

I get anxious about IEP's every year, to be honest. We have been very fortunate that we have been more than satisfied with her education and goals so far. This IEP, however, seems like a milestone for me, as it will cover the majority of her 9th grade year.

Reality has suddenly hit. Anna will be in high school next year. We only have four short years until she is pushed out into the real world. We need to make these four years count, and now all those fear and concerns I've pushed back into the dark corners of my mind are forced to the surface.

Her reading and math skills are at a 2nd to 3rd grade level. Is college even an option? How can she take the ACT or SAT? There is a tech center affiliated with the high school, can she enroll there? What if she needs the added support of a para-pro, is that possible?

For the first time, I feel completely unprepared. I feel like I should be researching this, that there is some sort of information I should have beforehand, but I don't really know what that is. I feel lost, and really hate feeling this way.

Wordless Wednesday - Lucy and Anna

2012-01-11T05:03:00.000-05:00

A 14 1/2 year old question, answered at last!

2012-01-10T09:57:00.001-05:00

I believe I've written in the past about the book Postmortem, by Patricia Cornwell.

In this crime thriller, the killer has MSUD. Lance and I both read the book while I was pregnant with Anna, and were surprised, to say the least, when she was diagnosed with MSUD! We had been sure that it was a fictional disease. I mean, come on, a disease that makes you smell like pancakes? I wrote a letter to Ms. Cornwell when Anna was still a baby, asking her how she came to use MSUD in her novel, but the only reply I received was a generic form letter from the publishing company. So we were left to wonder why, out of all the diseases and disorders to choose from, she decided on MSUD.

Yesterday I discovered, through my friend Erin, that Patricia Cornwell is on Twitter, and regularly interacts with her fans. I followed her, and tweeted to her right away about Anna and our question. By yesterday evening, I had my answer!

I will be honest, I screamed and acted like Anna would if Justin Bieber had tweeted to her! One of my favorite authors had replied to me, and answered a question that has been on my mind for over fourteen years! Thank you, Ms. Cornwell!!

Today's Dose of Happy

2012-01-09T07:50:00.001-05:00

(Every Monday, Band Back Together hosts Dose of Happy Monday. Check it out, read others' happy posts, and share your own!)

Today's dose of happy actually happened yesterday, but the warm fuzzies have lingered since then.

Anna and I drove out to HopeWell Ranch to say hi to and love on the animals. I so love it out there, as soon as you step onto the property all stress disappears. The horses were happy to see us. They miss the kids who come out and ride in the therapy program during the off-season.

The highlight, though, was seeing Buddy, aka the cutest little goat ever. He tried eating Anna's coat (which is already shabby, I know, but it's her "ranch coat" that we don't mind getting dirty).

Just look at how pudgy and fluffy he is with his winter fur! How could that not make you happy?

ready to restart the year

2012-01-04T06:48:00.000-05:00

I was happy to say goodbye to 2011. Although we definitely had bright spots, overall it was a disappointing year. We spent the year anticipating a transplant call that never came. We postponed plans and sacrificed opportunities "just in case". 2012 holds promise that the transplant will finally come.

Unfortunately, 2012 hasn't started out well. My grandmother saw the New Year in from a hospital room. Anna just had a short bout with elevated leucine levels.

I think I will make January 4th our new New Year's Day.

Wordless Wednesday - can I go back to bed?

2012-01-04T06:23:00.004-05:00

Goodbye, 2011...

2011-12-31T10:10:00.000-05:00

About a year ago, Lance and I declared 2011 the Year of the Liver. We were sure that Anna's transplant would come.

Well, here we are, with only 14 hours left of 2011, and no new liver. I try to be positive, and remember that it is better to wait until the perfect liver comes along, and that the timing isn't ours, but God's. But to be honest, I am really disappointed. We are all very weary of this waiting game.

So, goodbye 2011. Here's to 2012 truly being The Year of the Liver.

A Photographic Farewell to 2011

2011-12-29T12:00:00.001-05:00

As 2011 comes to a close, I'm joining Robin at Farewell Stranger and looking back on the past year via photographs.

So here we go!

January

February

(Ke$ha concert)

March

April

May

June

July

August

September

October

November

December