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.

Breathe.

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!

A Year Ago Today

I got my bfp. I remember it like it was yesterday... At work, wondering what I was going to drink for New Years Eve, planning on having a bunch of people over to the house. Figured I should test just to make sure, since my period was due the next day or so.

PREGNANT.

I was so excited I could hardly concentrate. My co-workers must have hated me that day because I spent the entire time running outside to talk on the phone, hanging out with my best friend and her husband in the meeting room, talking with Phil, and updating the girls on GP. We only told our best friends that day, since they were in town for New Years and they were both expecting as well.

That night I drank sparkling grape juice and dreamed about what the New Year would bring. I never imagined such a bitter sweet ending.