Running For Lillian

Long time, no blog!

2010-07-28T14:10:00.000-07:00

Well, I guess I've been a little bit lax in updating about my training. I am officially into week 6 of the Couch to 10K running plan that Vanessa so generously shared with me from her iphone :) Last night I did my longest workout ever. Before I left the house I was convinced that my husband was going to need to send paramedics over to the workout room in our community when I was done. Last night's workout was 73 minutes long, with 3 minute runs and 2 minute recovery walks. The week before I had a lot of trouble with 2 minute, 30 second runs, so I figured I'd be about ready to die by the end of running 3 minutes.

I was wrong! While I had one little snafu with my hair rubber band breaking 14 minutes in, overall the workout was great! Note to self: always carry a backup hair band.

I can tell that I am getting stronger and that my endurance is improving. My breathing usually goes back to normal (as opposed to huffing and puffing) about 30 seconds into the walking intervals, so I think I'll be able to handle the future workouts with shorter walks.

That's it for now--I'll be doing another workout tomorrow night. I can't believe I only have 3 months left to train!

--Beth

Living with Prader-Willi Syndrome

2010-07-17T05:21:00.001-07:00

Hungry: Living with Prader-Willi Syndrome - By Maisie Crow from liveBooks on Vimeo.

Camp Training

2010-06-24T06:21:00.001-07:00

I feel like the new shoes are definitely working for me, but they took 3 runs to really break them in and get comfortable in them. I had my best training run yet last night, and I just have to share about it.

First, a little background:
When I was 8, my parents sent me to Camp Louise, an all girls sleepover camp about an hour from where I live. I went for a month, and had such an amazing time that I went back every summer, including to work as a counselor and administrator. To this day I have only missed the summers of 2003 (had a "real" job), 2005 (grad school), 2007 (honeymoon), and now 2010 (baby!). My sister-in-law is the director now, and my nieces who are 3 years old (twins) and 1 are up here all summer. Right now I am in the midst of our first of what I hope are MANY visits this summer.

When I first learned that Avery was a girl, about 10 seconds after she was born, I thought to myself, "YES! She can go to camp!" It's an amazing place for kids to learn independence, problem solving, and to build relationships and make amazing friendships. I am a firm believer that EVERY kid should go to a summer camp at some point in their lives :)

Last night, while I had someone to watch Avery for a little bit, I did a training run at camp. This one was the hardest yet, as there are a lot of hills, rough terrain, and as of last night I have to run a minute and a half straight...not a small feat considering how bad a runner I am! As I was running I saw all these girls playing and having fun, singing at campfires, roasting marshmallows, and just enjoying a warm summer's night. As I ran I thought about Lillian and why I am running for a cause like PWS. Like I said before, I believe that EVERY kid should have a chance to go to camp. By funding research for PWS and working towards a cure, I'm hoping that Lillian will get that chance too. How amazing would it be for this little girl to experience all the wonderful things that summer camp has to offer.

If you haven't donated to Running for Lillian yet PLEASE click the link to our donation page. You will providing dollars for the kind of research that is hopefully going to allow Lillian and other children with PWS to experience all of the wonderful things that life has to offer.

New Kicks

2010-06-18T06:23:00.000-07:00

These are the new shoes I am hoping will take me the 6.2 miles of the race in October. I bought them over the weekend at Road Runner Sports and also got insoles custom molded to my feet. You'd think that all these high tech things would make it easier to run, but when I ran on Monday my foot muscles on the top where spasming like CRAZY. It was the weirdest feeling. I'm hoping I just need to break in the shoes by running a few more times.

I was hoping to run last night, but Matt, my husband, had a softball game. This left me home with Avery, and I am just not ready to attempt running with the stroller yet. My mom is coming to babysit tonight and I will run before Matt and I head out to dinner. Hopefully tonight's run is a little easier on the feet than Monday's!

Hot and Sticky!!!!

2010-06-17T07:00:00.000-07:00

That's what it has been like here in DC!

With a another heat wave approaching, training has resulted in more sweat than my body has made in a LONG time! This, combined with periodic afternoon showers, I've been drenched more than once this week.

Finally, after about 3.5 weeks I've completed Week 2 of the program. I suppose that the 13 week program will take me about 15 weeks but I will say things are getting easier-and more fun. I heard yesterday that for every pound you lose, it's like 4 lbs of weight taken off your knees. Coming from a woman who has had THREE knee surgeries, my knees now are withstanding 40lbs less stress! Weight Watchers and this program are really working!I am starting to think this program will be doable!

On another excellent note, the Running for Lillian Facebook page is now 311 fans strong! AND, we have now raised $1970! That is only $30 from the baseline amount that Beth and I need to be part of the team.

Speaking of our team, we have grown! Two of the Peden's friends will be training in Indiana and coming to DC to run with us. We will likely be combining all of our fundraising on one page so we will have to up our goal quite a bit so continue to spread the word!!!!

It's ON

2010-06-11T08:41:00.001-07:00

I have been very good at sticking to my training schedule this week! On Monday and Wednesday I did 45-50 minute training "runs." I have to put "runs" in quotation marks since "running" consisted of running for 30 seconds and then walking for 4 minutes. On Monday I was able to train outside, and went through several different streets around my neighborhood. There were a lot of hills so it was a great workout!

On Wednesday I had planned to run outside, but it rained most of the day. When I left the house to run it was clear, and looked like it would be OK weather for an outside workout. Still, I drove up to our community clubhouse and opted for the treadmill. I ran with my ipod on and watched Inside Edition and Access Hollywood (with the closed captioning on). I better not get used to that since there will be no such entertainment on the Marine Corps course in October! I was very thankful for choosing the treadmill in the end. When I finished up and headed back home it was POURING. I was very glad I didn't get stuck in that!

I was planning on running again tonight, but I might go do a Zumba class instead and run tomorrow. Tomorrow I am going to a running store to get fitted for running shoes for the first time ever! I'm hoping that finding the right shoes will help me run with a little less pain.

That's it from me for now. I'm hoping to update on the progress of the yard sale planning soon!

Week 2, Day 1 Complete!

2010-06-10T16:32:00.000-07:00

I promised today that Lillian crawling would get me running! So.... Week 2, Day 1 of training is complete! From what I hear, Beth has run TWICE this week already!

Tonight I tied Emma, our dog, around my waist and she led me!

Since Lillian is CRAWLING....

2010-06-10T05:20:00.000-07:00

I better start running!

When Sarah told me yesterday that Lillian had crawled her way (albeit backwards) from one place to the next I felt so, so very proud. I mean Ronnie just started crawling this week too and they are about the same age. Lillian is on POINT!!!!

I am so proud of Lillian. I am proud of Sarah and Phil for their incredible hard work with and for their sweet daughter. I'm proud of them for allowing the world to share their struggle with the rest of the world!

So, I'm telling you... if Lillian is crawling I better start running! The last two weeks have been slow given my back but I am looking forward to a nice jump start tonight in the DC humidity. This week's routine ( and yes, I know that it is THURSDAY of this week already) includes three 50 minute workouts, running for 1 minute and walking for 4 minutes. I know... I know.. that doesn't sound like a lot. But I'm telling YOU! It FEELS like a lot!

So... thank you Lillian for crawling this week and lighting a fire under MY feet. Soon you will be chasing me :).

Love to all and congrats again to the Peden family. You are amazing!

An Inspirational Video

2010-06-07T14:09:00.000-07:00

This video was posted on another mom's facebook page. I cried watching it - not because it was sad, but because watching this little girl grow up shows me all the great things we have to look forward to with Lillian.

Clare also has PWS. Wouldn't it be amazing if the money raised for RFL is the money that finds a cure for their hunger? It gives me goosebumps to think about.

You could change their lives.

(When you click Play, click "watch on youtube" to view the video)

Sarah

Hot Hot HOT!

2010-06-05T14:53:00.000-07:00

Today the Baltimore/DC area felt like SUMMER. It was hot and humid, the kind of day where you are very glad for air conditioning. Obviously it was a great day to go for a walk around Capitol Hill, grab some lunch, and start talking fundraising for our run. Oh, and I know you are jealous that I also got to play with Ronnie for a little bit :)

The biggest idea to come out of our meeting today is a garage sale of sorts for gently loved baby and children's clothing, as well as toys and other gear. Vanessa and I started talking logistics, though there is definitely a lot of information we need to gather, like can we actually do this to benefit FPWR? Where can we hold it without renting space? How do we arrange collection of items? We fleshed out a lot of possibilities and will begin investigating them further this week.

In my own brain I view the event as a "Donate what you can" for each item, with suggested donation amounts for each. I'm hoping we can get space for the event donated, as well as U-Hauls for transporting collected items, hangers/hanging racks, and all the other things we have yet to think of. Good thing we've been talking about Running for Lillian T-Shirts--we'll be able to give some good advertising to anyone who helps us out!

We also discussed trying to do some happy hours--one in DC and one in Baltimore--where a certain percentage of $$$ taken in will go to our cause. We also want to raffle off various items like gift certificates for local businesses and any wonderful homemade crafty items (hint, hint, you crafty ladies)

Anyway, that's the basic plan, we just need to get the OK from the folks at FPWR to start planning. Go Team Lillian!

Time to Plan...

2010-06-05T10:30:00.001-07:00

Beth will update later with the exciting things we did and planned today for our run, but here are a few pictures from our 4 mile walk from my house around the Capitol!

ME (Vanessa)
BETH
TEAM LILLIAN!

My back! My back!

2010-06-04T08:38:00.000-07:00

It has been a S-L-O-W week... In doctor speak, I have a small problem with "L4 and L5" in my lower back. In other words, "OUCH, MY SCIATICA KILLS!" So... no running or jogging this week or next. However, I can walk and sssttttrrreeeetttccchhhh and ice-- and of course go back to see the doctor twice next week. Hopefully we can nip this in the bud and I can start training more heavily again. I need to considering a 10K is more than I've ever run in my life!

HOWEVER, there is always a bright side to things that slow us down. We find time to focus on other things. The "other things" now are fundraising events for this run! Beth is driving down to DC this weekend. We are going to take a walk around the Capitol, have breakfast and try to put together a "Team Lillian" plan of events.

We will post pictures this weekend.

Thank you so much to everyone for your support! Our facebook page is over 200 strong and as of now, we have raised $1790.00 towards our goal! Everyday, I am blown away by how this event is bringing people together.

WAY TO GO EVERYONE!

On your marks, get set, go!

2010-06-02T17:41:00.000-07:00

I played field hockey in high school. When our team ran at the start of practice we would run what our school knew as a "PC," or "Perimeter Course" around our school. When our coach started us off I knew that no matter what, I'd be the last to finish, and a lot of the time I'd try to weasel my way out of running. "Oh, my ankles are bothering me! Can I go ride the stationary bike instead?" I'd ask. I hated running with a passion. I had no endurance, so I'd always need to walk at some point. How long was a PC? 1.4 miles. Since high school I've been happy to exercise, but that exercising has NEVER involved running. I take that back. I had two failed attempts at training to run a 5K. I trained for about 2 weeks once, and 3 weeks the second time, decided I preferred NOT to have burning calves and a stitch in my side and quit.

So here I am, 30 years old, just had a baby, and I have signed up to run a 10K. Why on EARTH would I do such a thing, being such an anti-runner?! The answer: Lillian.

If you read Vanessa's post from yesterday you'll get the background on how she, Sarah and I "met." I remember when Sarah gave birth to Lillian, and being so excited for this new little girl born into our group. I distinctly remember Sarah posting about the concerns they had for Lillian right when she was born, and I followed her progress and updated information about Lillian's situation. When Lillian's diagnosis was given, Prader-Willi Syndrome, I sprung into my clinician brain, (I'm a speech-language pathologist for preschool and Kindergarten students) and started to think about how my past experience with Prader-Willi might help Sarah and Lillian.

And you know something? I realized very quickly that my clinical knowledge really isn't important in this group. What's important is offering the kind of support that friend's can give--whether it's an ear for listening to frustrations, or a thumbs up or "hug" (albeit a virtual one!) when things are going well.

When Sarah let us know that FPWR would be hosting runners for the Marine Corps Marathon 10K in DC I saw Vanessa jump at the opportunity to help Lillian. I thought to myself, "This is something I NEED to do. This is something I can do for my friend and her daughter." I eagerly joined up and cannot WAIT to finish this race in honor of Lillian and other children living with Prader-Willi. Hopefully, through donations made in support of our run, Vanessa and I can help make a cure for Prader-Willi a reality.

This time is going to be different for me. I will meet my goal of running this race. I HAVE to meet this goal...for Lillian.

The Journey Begins...

2010-06-01T05:14:00.001-07:00

Well actually the journay began....

About 2 years ago a group of women from around the country ( and world) came together in a message forum while trying to get pregnant. Since then, about 50 of us have grown to be close friends, sharing our pregnancies, losses, deliveries, newborn experiences, business ventures, lives... Together we have created a web of support so strong that in the very darkest hours we have not been alone. In our most joyous moments we know that those same women are standing right behind us, cheering us on. It is true that many of us have not met, yet we know more about the hopes, dreams, fears and life experiences of each other than many of the friends we have "in real life".

It was this context that Sarah and I supported one another through difficult pregnancies. It was in this context in which my son Ronnie and Sarah's daughter Lillian were born. And it was in this context that Lillian recieved her diagnosis. I would sit struggling with the changes a newborn brought to our lives, feeling incompetent, tired, unsure if I was doing anything right. Half a country away, Sarah was doing the same thing, but with the lense that her baby was sick and wasn't going to get better. I spent hours talking to my husband, thinking about what we would do in that situation.

From watching Sarah I've learned what you do. You search for answers. You don't beleive the first thing anyone tells you. You request second opinions. You start advocating. You begin researching. You believe in your child and that they CAN be the exception. And most importantly, you LOVE your child with every bone, muscle and fiber in your body.

The Peden Family inspired me. When Sarah sent me the link for the Marine Corps Marathon 10K on behalf of the Foundation for Prader-Willi Research, how could I NOT sign-up? I may not have met this family in person, but I consider Sarah as one of my dearest friends.

Although I used to be a professional-level ski racer, those days ended over a decade ago along with any semblance of fitness. However I have decided that I am willing to do whatever it takes to get in shape to run 10 Kilometers on October 31st in honor of Lillian.

Already our fundraising efforts are turning amazing results and I can only imagine how the amount will grow in the next 5 months.

Let the journey begin....

The Diagnosis

2010-05-31T21:40:00.000-07:00

When we first brought Lillian home after 2 weeks in the NICU at Riley Children's Hospital, we were praying for her to have Unexplained Hypotonia. I just wanted to take my baby home and get back the chance to have the new mom experience that the doctors robbed me from having. My dreams of having those adorable newborn photos were crushed by the doctors instructions not to take Lillian anywhere but home. The feeding tube she had taped to her face and pushed down her nose into her stomach was a constant reminder that nothing was going as "planned." The baby we planned for from day one became the baby that none of our plans mattered to. The dozens of newborn and parenting books I read during the 40 weeks that I carried her in my body meant nothing. Nothing applied.

When Lillian was around 6 weeks old we got a phone call from our local pediatrician telling us the news of her diagnosis. She has Prader-Willi Syndrome. I'll never forget the sinking feeling in my body. Everything went numb. At that moment I felt like I lost her. I lost the child I had carried for 40 weeks. The baby that I wanted so desperately to be perfectly healthy. She was gone. I felt like I was given someone elses baby to care for. Like God was saying, no Sarah, this is the baby you get to take care of. All of those dreams you had of her breastfeeding, baking cookies, going to prom, high school and college graduation, her wedding, grandchildren... you're going to have to let go of them right now. This is different and you need to start over. Stop trying to plan the future because it's all changed now.

For weeks it felt like I was walking around with an open wound. I kept going back and forth in my mind with the situation we found ourselves in. She seemed so perfect and innocent, but in my mind it was so hard to accept our future. I felt like the doctors painted her as a monster, and that our future was going to be hell. But the tiny baby that I was caring for was so sweet. She hardly cried, and as high maintenance as she was health-wise, she had the most easy going personality. She was completely reliant on us for her survival and I had to choose to either face the challenges ahead of us or pull the covers over my head and pray for it to all be over. So we took things one day at a time. Sometimes it was more like one hour or minute at a time, but we did our best to show her she was loved.

Weekly physical and occupational therapy started sometime around 8 weeks. She couldn't lift her head while on her belly and could hardly move her head on her back to track a toy or light. But man did she have great eye contact. She would study anyone that came to see her and follow the conversation going on around her. Week after week we watched her improve. She has always amazed me with her determination and ability to learn quickly what she "should" be doing. She tries so hard to train her muscles to do the simple things we all take for granted. It's still a lot of work, but she's progressing so well. I would guess that at 8 months she's physically doing what a 5 month old should be doing. She still gets about half of her meals through a G-tube that was surgically placed in her stomach, but we know it will only get easier for her to eat by mouth. Sometimes I wonder if that's really something to celebrate... but the more muscle tone she gets in her mouth the easier it will be for her to talk - which will also be delayed. She's getting weekly speech therapy now to help.

Having Lillian in my life no longer feels like a loss. The love she brings to our lives is greater than anything I've ever experienced or thought I would experience. The plans we had for her future are now much different than what we originally expected before she was born, but it's all worth it. It feels so selfish when I think about the "troubles" of adjusting our lives to meet her special needs. She's the one who has an uphill mountain to climb every day. She's the one who will have to fight her instincts daily to do what is right for her body. She's the one who has the troubles of adjusting to our lives.

Every day we work with Lillian to make her life a happy place. To build her strength and show her love while establishing a routine she can hopefully benefit from for the rest of her life. Every day we soak her up and all of her joy in experiencing new things while also meeting new obstacles. Every day we look PWS in the face and say "you are not taking her from us today." One day she's going to look back and be hungry. Unless SOMETHING changes. We NEED to find a cure for the insatiable hunger. Research NEEDS to happen to find this cure.

Please donate to Foundation for Prader-Willi Research. No parent should have to fear the future for their child. No child should have to fear their own lives.

Vanessa and Beth are running this 10K because they believe in Lillian's future and the many other babies, children, and adults with PWS. They believe that research can find a cure. They believe that it all starts with one person doing SOMETHING to raise money.

If you also believe in research and increasing the quality of life for Lillian and others like her, please donate to FPWR.

Sarah