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.

14-15 weeks

I keep avoiding new blog entries because progress has seemed to slow down the past couple of weeks. Not the super happy positive news I like to share, but reality...

Lillian had an appointment last week with her Developmental Pediatrician. She was scheduled for a swallow study, but they canceled it when we told them we were already feeding Lillian more through the bottle and that I had widened the nipple. Since she doesn't appear to be aspirating, and hasn't had a chest cold or any signs of aspiration, they just said continue doing what we're doing.

One thing they did schedule was an upper GI in preperation for a G-tube. We have an appointment with a surgeon in 3 weeks to talk about the installation process, and hopefully schedule the procedure. While Lillian is eating more from her bottle, it's just not enough. It takes her nearly an hour to eat an ounce, and that's on a good day. The past two days she has really been a challenge to feed. Hardly sucking and spitting out what she does suck. I'm literally in tears typing this because it feels like no matter how much time we spend trying to eat, she just doesn't want to. I don't like the thought of force feeding my child. How crazy is it that I want her to eat now, and some time down the road I'm going to be regulating how much she eats.

Speaking of regulating how much she eats, poor little Lillian is already on a diet. Her dietician cut back her bottle by 5 mls (not much, I know) but I didn't think she would be on such a strict diet so soon. At least she doesn't care since she hardly has an appetite. So now she gets 115 mls 7 times a day.

I feel like this week she has just completely declined in her abilities. Last week she could hold her head up and she was taking her bottle better. She was batting at her toys and starting to make more noises "talking". This week she just lets her head roll all over. She wont hold it up. She wont take her bottle. When I lay her down to play with her toys, she hardly even tries. She isn't talking much either. I'm really hoping she's just worn out from the holidays and once she gets back on schedule she will surprise us and start to do better again, but I'm starting to wonder how realistic that is. I just need some kind of indication that she's still functioning. Fuck.

yay!

Lillian just put a toy in her mouth for the first time. Ever. She loves her Lamaze Peacock toy!