A Very Serious Question...


How will I ever say "no" to that face???


Because she's just so darn cute

And I had troubles loading this yesterday...

Another video of Lillian!

Lillian turning pages from Sarah on Vimeo.


Delightful Delurking Follow Up (Video added)

First I just have to say, I jumped on the chance to *meet* more of the people that read this blog because I'm always amazed how sweet, understanding, and compassionate you all are. At first this blog was created as a journal for sweet little Lillian to see the progression from growing in her mommy's belly, to making her first appearance, rolling over, crawling, walking, etc. Then, when we were given Lillian's diagnosis this blog became my only outlet. The only place I felt comfortable talking about my feelings of doubt, sadness, loss, and desperation for feeling "normal" again. I never imagined the words of strangers could be so uplifting and encouraging. I never even thought for a second that people would be interested in our life story. So THANK YOU for taking the time to say hello, post a comment, and for encouraging me to stay strong and be a good mommy for Lillian.

Question #1 from Heather - "How did you find out you were pregnant with DD and what was your reaction?"

I found out I was pregnant with Lillian on New Years Eve 12-31-08. It was our fourth cycle trying to conceive. We were having people over that evening for a little New Years party and I wanted to make sure it was ok to have some champagne with everyone, so I tested... at WORK! lol. Probably not the smartest on my part, because when the test said "pregnant" I about fell over and passed out in shock. The rest of the afternoon I was worthless at work and had the hardest time concentrating. I walked around with a rediculous smile on my face all day, and convinced Phil to come to my work for lunch. I told him about it and he was shocked and happy. My best friend was in town that day and I told her and her husband (she was about 5 months pregnant) and I called my other close friend and told her too. We didn't tell any other friends or family until I was between 8-12 weeks pregnant, and luckily my friends know how to keep a secret. :)

Question #2 from Olivia - "What are your favorite blogs to read?"

My favorite blogs to read are...

The Thomas Chronicles - Mrs.Bro is hilarious, sweet, and has a handsome little baby named Thomas. She's absolutely fabulous and a smokin hot librarian ;)

Shenkinators - Ali is such a great mommy to her two little boys Cole and Dean. Dean is another baby that has PWS (like Lillian). Ali has been such a blessing to me, Phil and Lillian. When things looked dark and scary, she shined a light on us with all the best information and contacts to help us on our journey.

Completely Eclipsed - Melissa has the ability to tell it like it is when it comes to being a mother. Every time I read her blog I find myself nodding my head in agreement and laughing. Plus, Isabella is just too cute. If you want to know the truth about mommyhood, read her blog!

Question #3 from Kristin - "I was wondering if yall were planning on having any more babies in the future."

We're still waiting on the results from a genetics test to see if Lillian's PWS was a random one time thing (meaning there's less than 1% chance it'll happen again), or if it was caused by some kind of funky gene imprinting "thing" (meaning there's a 50% chance it could happen again). If the test results come back next month saying it was random and it's not likely to happen again, we'll probably start trying for another baby very soon :). We want Lillian to have a sibling close in age, someone to challenge her, play with her, and love her. If it's the funky imprinting gene... well, we'll probably look into IVF and it'll be a while before we get into that because of the stress involved.

Question #4 from Megan - "I'm curious to know what you did or did not like about your pregnancy?"

I liked feeling Lillian's kicks and squirms. I liked my body. I liked that my cravings were healthy (most of the time) and I actually ate healthier when I was pregnant then before I got pregnant. I didn't like being so limited in activities (tennis, running, boating, scuba diving, etc), especially being pregnant in the summer. I didn't like the awful sinus infection I got for the majority of 1st tri, the flu that followed it, and the headaches from functioning on no caffeine. (All unmedicated) I really didn't like cancelling our cruise :(.

Question #5 from Laura - "How did you meet your husband?"

Phil and I met at our church. There are 3,000 members, so it's pretty awesome we even crossed paths! We met in a college bible study group and my ex-boyfriend introduced us! We started dating about 6 months later.

Question #6 from Ashley Ann - "What is your greatest wish for Lillian's and your family's future?"

My greatest wish for Lillian's future and our family is for a cure to end the hunger that people with PWS deal with every single day. If we could end their hunger, they could live independently and ultimately increase their over all happiness. All I want is for her to be happy.

Question #7 from Anonymous - "Did having a special needs baby change your relationship with your DH."

Absolutely. We realize we have to work harder on our relationship every.single.day. The divorce rate for couples that have special needs children is 80% and we are very aware of the higher level of stress that we're both dealing with. We've always been involved in a small group from our church of other younger married couples, and we're also involved in another group through our church that is meant to help build marriages. When one of us is upset about the future with Lillian, the other one usually stands strong and goes the extra step to make sure they can catch a break. We make sure to tell each other how we're feeling and compliment each other. I wish we had more date nights, but since Lillian needs to eat through a g-tube, we don't have anyone we can leave her with right now. When we are both feeling down at the same time, we see a counselor separately. I never imagined this as our future, but it's working and we're developing a stronger bond by just making it through the day.

Question #8 from Sarah - "What are your greatest joys and some of your greatest challenges of being a new mom?"

The greatest joy is seeing her develop. She has so much stacked against her but she takes every day like a champ. She pushes through therapy, sleep studies, bronchoscopies, blood draws, and everything else we challenge her with ALL the time. She's been through more in her short life than I have in my 26 years. I'm in awe of her strength and cheerfulness. I love to watch her soak in the world around her and try new things. The greatest challenge of being a new mom is putting aside my expectations. I never expected to have a child with a genetic syndrome. I never expected to fear for her future. I never expected my daughter to need so much help just lifting her arm or holding her head up. I never expected to feed her through a tube in her nose or a hole in her stomach. It's a challenge to not compare her to other babies her age. There are so many challenges to being a mom, and being Lillian's mom is a very rewarding challenge.

And FINALLY, as promised... a video of Lillian :)

Lillian talking to Brina from Sarah on Vimeo.


You know you want to...

It's de-lurk week in the blog world, and you know you are dying to de-lurk and say hello :). All you have to do is introduce yourself, ask a question, and include your blog link (if you want to). In return I will answer any questions and maybe even throw in a video of Lillian doing something really adorable. How can you say no to that?
Over the weekend I'll answer all the questions in a separate post!


4 months

I can't believe Lillian is four months already! My goodness time flies. Right now she weighs right around 14lbs and is 24 inches tall. Tomorrow we take her to Riley Hospital for her first surgery. She's getting a G-tube placed. I know it's not a "big" deal, but for some reason PWS kids have a hard time with anesthesia and of course I'm worried about her. Luckily her other doctors are involved and everyone should know the precautions to take with her. She's staying over night until Tuesday and I'm already all sappy about her being away from us. I would hate for her to be there alone wondering where we are.

Today we dedicated Lillian at our church. It wasn't a big long ceremony or anything, just a time when new parents take their babies up on stage and everyone says a prayer for them and we agree to raise them in a Christ filled home. I really hope that Lillian is able to have faith in God to help her with the struggles she will face and to give her guidance to become the wonderful little being she is capable of becoming. There's no way that I, as her mother, can give her all the tools she needs to be patient, loving, thankful, humble and giving (especially when I have a hard time remembering to be that way myself).

So tomorrow will be the first day in nearly 3.5 months that she will no longer have a tube taped to her face, going in her nose and down to her belly. We'll finally get to kiss both of her cheeks as much as we want, and not have people stare at her in public, or that awkward silence people get when they are wondering what in the world is on her face but can't decide if they should ask or pretend then don't notice (seriously, just ask). She won't *obviously* have something different about her. People won't feel sorry for her (or us) when they see us in public and her precious little cheeks won't be red and raw from the tape that keeps her tube in place. We might actually get to feel what everyone else feels when people say "congratulations on your new baby" without a sympathetic look on their face.
Enough of my rambling...


Our Schedule Today

2am - feed Lillian
6am - feed Lillian
8am - Wake up, pump, eat breakfast, wake up Lillian and play
9:30am - feed Lillian, give her Zantac, CoQ10, and breathing treatments
10am - Grandma comes over to watch Lillian while I start laundry, run to the store and jump in the shower
11:45pm - Lillian has Occupational Therapy
12:45pm - Feed Lillian, give her poly-vi-sol, eat lunch, read Dr. Suess
1:45pm - Pediatrician appointment
3:00pm - Run to Target for prescriptions
4:00pm - Feed Lillian, pump
5:00pm - Phil comes home, plays with Lillian while I catch up with emails, etc.
5:30pm - Make dinner while Lillian naps
6:30pm - give Lillian breathing treatment
7pm - Feed Lillian, give her Zantac
7:30pm - Give Lillian bath
8:15pm - Bedtime for Lillian
10pm - Feed Lillian

Lather, Rinse, Repeat.



Just a quick update

So we met with the pulmonologist to go over Lillian's last sleep study. She said "this sleep study doesn't concern me." In fact, when I told her Lillian had the sleep study in preparation for starting growth hormones she said "Growth hormones will definitely make an improvement." So when I told her our endocrinologist cancelled Lillian's GH because of the "failed"sleep study, she went to get a second opinion from another pulmonologist. That pulmonologist also said the sleep study wasn't concerning...

Yeah. So take THAT endocrinologist. ::insert angry face here::

I assume he's still going to be too chicken to prescribe Lillian growth hormones, so we've been in contact with a doctor in Florida to do it instead. She agreed to call him and try to talk some sense into him, but I will be shocked if he listens. After all the trouble we went through with this sleep study and trying to get Lillian on growth hormones, I'm really glad we are educating ourselves and not letting the doctors call all the shots. It's so true that we as parents are the only ones that are really going to look out for her best interest.

Another example of poor guidance from a medical professional: Last weekend I was talking with a speech therapist about wanting to get Lillian help with oral motor skills. She needs it. How else is she going to learn to eat by mouth? I tried to get a speech therapist through First Steps back in October and she didn't qualify for one. They said we would have to wait until she has a speech delay and that being on a feeding tube doesn't automatically qualify someone for a speech therapist. I explained this to the speech therapist and mentioned I thought I would try to get one again through First Steps. She tried to tell me that it wasn't worth trying again, that I should hire a private speech therapist and that First Steps had too many rules set in place to get a speech therapist this early. Today I made ONE phone call, told the coordinator with First Steps that it's standard of care for anyone with Prader-Willi to have a speech therapist to help with oral motor and feeding, and wouldn't you know... she said SURE! She sent out a mass email to all of their speech therapists to see who would be available to start meeting with us ASAP.

I'm definitely learning how persistence can really make a difference in the type of care Lillian receives. There's no reason why she shouldn't get every opportunity to get the treatment she needs, and I'll be damned if somebody tells me "no" and thinks that I'm going to accept that as an answer.


It's always something.

In preperation for starting growth hormones, Lillian had her third sleep study. She failed it. Miserably. And screamed through the first hour of it. I think she had a cold and it caused the study to have a crappy outcome, but oh well... just another doctor appointment (or a few dozen) to add to the calendar.

So her endocrinologist decided to put growth hormones on hold. This is unacceptable for us so we are getting a second and third opinion. This means we'll be taking a trip to Florida to visit with a more experienced doctor, but knowing that Lillian is in the best care is all that matters to us.

Even though she screamed and faught the sleep study, when we got home she had physical therapy and did SO well! The therapist was impressed with her, and I was impressed she was even willing to let the therapist work with her. She's such a good baby.

Tomorrow we're attending the PWS Indiana chapter meeting in Indianapolis. I'm excited to meet the other families and children with PWS. As excited as I am to meet other people in our situation, I'm really nervous too. You never know if something like this is going to make you feel better or worse... Hopefully it makes us feel better.

Since I've been slacking, here are some pics!

Daddy's way of keeping me entertained....

The first man I ever met! (Our Delivery Doctor)

Mommy and I matched for Christmas

Help! Is this really my family?!?

I stayed up way past my bedtime for this.

But slept in the next morning with Daddy

Happy New Year!


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