RFL blog is up!

Follow the journey of Lillian, Vanessa and Beth as we raise money for Foundation for Prader-Willi Research.

http://www.runningforlillian.blogspot.com/

XP: The Diagnosis

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

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Friends

What makes somebody a friend?  How do you decide if someone is a really good friend, an acquaintance, a friend by default, or convenience.  You know those friends, a friend of a friend who became your friend because you were always hanging out with the same people type of friend.

When I was a young girl we moved around a lot. I never spent more than two years at a single school and moved between towns and homes in and out of my grandparents house and with my mom. I made friends at every school I went to, had sleep overs, birthday parties, play dates at the pool and snow fights in the winter.  When I was younger I would have described a friend as somebody I liked to hang out with.  Someone I shared lunch with at school.  Somebody I called and talked to whenever homework was done and nothing was on TV.

When I was in high school a friend was somebody I could skip school with and spend the day laying out by the lake.  Somebody to pass notes to in class about my latest crush.  Somebody that would double date at prom and sneak me out of the house after curfew when we just weren't ready to stop partying. (Can you tell I was a hand full as a teenager?)

When I was in college a friend was someone I could study with.  Someone I could go out dancing with and wake up the next morning and laugh about the things we saw on the way to class with a hot cup of coffee.  Someone who helped me color my hair, pick out the hottest shade of bright pink nail polish, and fix me a drink after a bad date with a guy that clearly didn't appreciate a descent conversation.

Here I am in my (semi) late twenties and I'm finally starting to understand what being a true friend is really about.  A friend is someone that checks in on you when they know there's nothing they can do to fix the situation but they don't want you to feel alone or discouraged.  Someone that takes a second from their own busy life to give you the encouragement you need to get through the day, the week, the month.  Someone that shares their deepest darkest secrets regardless how chaotic, crazy, hilarious, or gross they are.   Someone that laughs about life with you when nobody else "gets it."

A friend is someone you can go weeks without talking to because life gets crazy, but as soon as you say "hi" it's like they were never really gone.  A friend is someone that isn't afraid to tell you the truth.  Whether it's a painful or pleasant truth, they can tell you and they know you won't fly off the handle.  A friend is someone you can talk to about hormones and marriage and parenting and loss without feeling judged or embarrassed.  Someone you can talk to about your painful past that still haunts you, the present that challenges you and the future that gives you anxiety. Someone that knows when to just listen, knows when to give advice, and knows when to cry along with you.  They stand up for you.

The crazy thing about this revelation for me is where it originated.  Sure I have a few close friends that I grew up with and they fit most of these descriptions of a true friend.  But this revelation came from such an unlikely place.  A group of girls that I've spoken to for almost 2 years online that originated from a public message board have been the best friends that I've ever known.  Most of us have never met, but I feel more bonded to these girls than most people I see in my daily life.  To see them all come together and care enough about Lillian to do something to help change her future for the better has been one of the greatest experiences of my life.  I'm so grateful for these friends.  Girls - you know who you are.  Thank you. 












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My Little Wonder Woman

It's been a while since I made an update about Lillian's milestones.  We celebrate each one like she's winning an Olympic gold medal, but by the time I come here to post she's already doing something else!  So I'm mainly writing this so that one day I can look back and be like "remember that time..." 

Lillian can officially -

Roll back to belly and belly to back.  She likes to do this over and over and over. Yesterday she did it in a circle so she could get a wee bit closer to Phil, who was on the couch cheering her on.  She was laying on the floor with me and it was so obvious she wanted to get to him some how.  I helped her army crawl to him (and by help I mean I pretty much moved her arms and legs so she could get the feeling of it) and he rewarded her with lots of hugs and blowing raspberries on her, her favorite... which brings me to the next milestone...

She giggles.  She's stubborn with her giggles, but she does it when we blow on her neck, her belly, when I tickle her face with my hair, and when I bounce all around like a bobble head doll while she sits on my lap singing "Who's that Baby?!" (think "Who's that Lady") over and over and over.

She is starting to SIT UP!  This hasn't been mastered from laying flat on her back, but when I hold her in the cradle position to give her a bottle she sits up!  It makes it difficult to hold her and feed her, but I'm loving it - so I don't discourage it at all.  She can also sit up from laying at a 45% angle on a wedge.

She can finish a bottle.  Lillian came home from the hospital on an NG tube.  Around 4 months she got a G-tube.  I wasn't very persistent with bottle feeding until 6 months when we started her on purees.  Now she can finish at least 2 bottles a day.  I only offer her a bottle about 4 times a day, and the rest of her formula goes in a tube.  The reason for this is she's just not hungry.  I don't want to force her to eat EVER.  She can get oral motor skills by doing other things - and I'm just not going to ever push her to eat something.  I don't care if she never masters the bottle... do you see many 10 year olds with bottles?  nope.  We'll work harder with the sippy cup once it's introduced.  For now I'm happy with what she can do.

She tripod sits.  This one started about 2 weeks ago, but she mastered it this week.  I can set her up, and leave the room to make a bottle/my morning coffee/breakfast/let the dog out and she's still sitting up!!!  Sometimes she topples over, but the girl is really learning to balance herself.  This has made play time a LOT more fun. She can *kind of* tripod sit and reach for a toy, but she's getting better at it each day.

She says Aaaaaaa Eeeeeee Oooooo Uuuuuu.  Not babbling yet, but that's ok.

She transfers toys from one hand to the other.  She LOVES to do this.  Lately her favorite thing to transfer and investigate is a pacifier, a small wooden block, a rattle, pretty much anything she can palm with one hand and look at closely, then from afar, and then promptly shove in her mouth and chew on.  I love watching her :)

She bangs and shakes.  Bang bang bang.  Everything.  Especially rattles. 

She "waves" back at us.  Well - really she just flails her arms, but it's in response to being waved at... so I count it.

She can push up!!  She did two push ups today off the side of the wedge.  The wedge was under her hips and her hands were on the ground, with her head resting between them... and she pushed up!! She did it twice.  I was so proud.

Today she held herself in the crawling position for the first time during OT.  She held it for a few seconds, but I was so excited for her.  She did it more than once.  Her arms eventually gave out, but I was SO surprised when the OT let go and she stayed up!  We'll be doing that a LOT more from now on. 


I think that's pretty much the run down.  I'm so proud of her and so happy to get to celebrate these milestones with her.  She amazes me every single day and makes every detail of life a cause for celebration.  It doesn't get much better than that.


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Extreme Home Makeover

Tonight on Extreme Home Makeover there is a family with a child that has PWS.  I'm super excited to see how they make over the kitchen - and really glad that people will be able to see a glimpse of PWS and hopefully it will raise awareness. 

With that said - I'm fully preparing myself to be in a funk after tonight.  I hate to say that... but I guess it's better to be prepared for the worst and hope for the best.  Fingers crossed it leaves me feeling uplifted and hopeful.  I guess we'll see.

(If you didn't get through the whole last blog post I posted... check out the end where I posted pictures of Lillian making friends with the farm animals.  Cracks me up EVERY.TIME. lol!)


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A Mother's Day Request

First of all - Happy Mother's Day to all the moms out there!  It's a tough (but gratifying) life being a Mom and we deserve a day to celebrate all of the hard work we put into our families.  I think this is why we can bond with so many other moms (and moms-to-be), even the ones we haven't met, because the act of being unconditionally devoted to our families is something we all have in common.  I hope you all have a wonderful weekend and a wonderful Mother's Day.

I have one small favor to ask this Mother's Day.  For anyone that has followed Lillian's story and would like to contribute to making her life (and her mothers life) a little bit brighter, a little bit more manageable, and a lot less stressful, there's a fundraising event for the Indiana Chapter of PWSA (www.pwsa-usa.org).  It's called SKIP A LUNCH for Prader-Willi Syndrome and it's this Friday, May 14, 2010. 

The Indiana Chapter of PWSA is just getting it's feet on the ground and we had our first meeting when Lillian was just 3-4 months old.  We were able to meet other families and their children with PWS, listen to speakers about the future of our children, we talked about long term care facilities and the possibility of building a facility specifically for individuals with PWS in Indiana (because they can not live unassisted and the closest facility is in Wisconsin).  We met with a speech therapist that had experience with PWS (which is uncommon around here) and we plan to meet with more people who can help us raise our children into adults with full and happy lives at upcoming meetings - but that costs money.  Since our chapter is just getting started, we are doing what we can to raise the money to pay for meeting space, speakers, therapists, and lawyers so that we can all get together and do our best to provide for our children the care they need from birth all the way to old age... because sadly we aren't going to be around forever to care for them.

This organization could really impact Lillian's future and has already helped us in her short life.  So here I am, shamelessly asking you to donate your lunch money..... Here is the flyer I've copied and pasted from the Indiana Chapter of PWSA.

****Disclaimer**** That is NOT my address and I am NOT collecting this money.  It's used for the entire Indiana Chapter which we are a part of.  I will not see who donates money or how much is donated.




SKIP A LUNCH FOR PRADER-WILLI SYNDROME



May is PWS awareness month. Prader-Willi syndrome is a genetic disorder affecting approximately 1 of every 12,000-15,000 births. It results from a small deletion on the 15th chromosome. PWS is the most common known genetic cause of life threatening obesity in children. It typically causes low muscle tone, short stature if not treated with growth hormone, behavior problems, developmental delays, and a chronic feeling of hunger. People with PWS NEVER feel full, even after consuming a large meal. Because of the low muscle tone, people with PWS burn fewer calories and can gain a significant amount of weight eating the same amount of calories as their peers. Therefore, they have to be on a low calorie diet. People with PWS CANNOT control the urge to eat. This urge to eat is physiological and overwhelming; it requires constant vigilance. Individuals with PWS must be supervised at all times.



YOU CAN HELP



PWSA of Indiana has declared May 14th, 2010 as skip a lunch day. We are asking you to skip your lunch and donate your lunch money to PWSA of Indiana. Our organization is just getting its feet on the ground and there are many families affected by PWS here in Indiana that need our help.



Thank you,



………………………………………………………………………………………..

Mail your donation to PWSA of Indiana, 7536 Moonbeam Dr. Indianapolis., IN 46259



Name________________________________________________________

Address_________________________________________________________________________________

________________________________________________________________________________

Amount___________________In honor of______________________________________________



Blogger Templates*Thank you all for taking the time to read this.  I normally wouldn't post something like this on my blog, but it's Mother's Day and I don't have anything to lose by asking.*

Oh, and since I went out of my comfort zone and asked people for donations - here are some fun pictures of Lillian at our family's farm this past Thursday to bring things back to normal.

Oh, what a sweet little baby gossling....

OOPS!

Don't worry, I'm happy to report the little baby gossling is still alive and happy on the farm... and thankful for still having it's head.  :)