yay!

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

12 Weeks

So much has happened in the past couple of weeks. We had an appointment with the Pulmonologist, which led to a bronchoscopy. The results back from that showed that Lillian doesn't have any major obstruction in her airway.

Last week we had a meeting with our Endocrinologist Todd Nebesio. So far we really like him, but he isn't very experienced with infants that have PWS. He was very hesitant to give Lillian growth hormones this young. We basically told him if he doesn't, we'll find someone else that will. We would rather he give us a try so that the next family in our shoes can get help ASAP. Hopefully we can set a new standard for his PWS patients. Anyway, we found out today that we can get the GH, but he wants us to have another sleep study first. Lillian freaked out during her last sleep study, so it sucks we have to have another, but it's worth it if it means she can start GH treatment. We should find out in a couple days when that study is scheduled. Sometimes they take weeks or months to schedule. Fingers crossed it's a quick appointment for us.

Yesterday we met with Dr. Hainline, the Prader Willi specialist, a genetics counselor, and a dietitian. Lillian is in the 50th percentile for height and weight, which would normally be a good thing, but the dietitian would prefer she be closer to the 25th percentile. She gave us a new feeding schedule and finally gave us more than 3 hours at night! We can finally sleep up to 5 hours straight as long as Lillian doesn't wake us up first.

I also got a call today from the regular pediatrician's office about getting a shot monthly that's supposed to keep her from getting respiratory infections. Now that I think about it, I should probably call Dr. Hainline and get that Ok'd by him. She also has a clogged tear duct, which is no big deal... but it's discharge is kind of green so we're going to the doctor tomorrow to make sure it isn't leading into an infection.

We're still going strong with physical therapy and occupational therapy. I really like both therapists and they tend to stay past their required 1 hour slot and work extra with us. We're going to be working together for at least three years, so I'm really glad we like each other! We might go from 2 meetings a week to 3-4 a week in the future, so I'm SO grateful they work well with Lillian.

Here's the low-down on the other stuff, and a few pictures:

Age - 12 weeks

Weight - 11lbs 3oz

Height - 22.5 inches

Sleeping habits - She sleeps pretty well from 9-4:30 or 5am. Takes 2-3 naps a day that are about an hour long.

Eating habits - She takes 28oz a day. About 18-20 of that is breast milk. Her suck is getting stronger and she's able to take about 40-60ml by bottle a day.

Favorite activity - She LOVES her play gym. She starting to realize her hands can touch the things that hang from the bars and she gets really excited about it!

Cutest Moment of the Week - She kept accidentally hitting her toy that makes chime noises and looked over at it each time. She was trying to figure out how to bring her arms in and hit it again. She also keeps pulling her hand to her mouth and tasting her hands.
Milestones - Better hand coordination, better sucking, rolling from side to back

Firsts - She went to church for the first time last Sunday and also went out to dinner with us at DeAngelos.

10 weeks

Lillian is doing so well! She's been awake more the past few days and her personality is really coming out. She's showing a preference for things, like a clean diaper, a position to sleep in, a time to eat, etc. She lets us know when we aren't doing exactly what she wants ;). Thankfully she isn't throwing fits, but she'll let out a cry or a "fuss" when she needs to.

Thanksgiving was a big day for all of us. It was the longest car ride she has been on (2 hours) and she was around a LOT of family all day. She definitely didn't want to be held by a bunch of people, so she was over it by the end of the day. We'll have to come up with a better strategy for Christmas... like NOT skipping her nap.

I'm still pumping every 2-3 hours and finally started seeing an increase in milk supply this week. I swear every time I'm ready to give up, it increases just enough to keep me going!

Lillian has her 2 month appointment and weighed 10.5 lbs! She got her DTaP and rotavirus vaccine, both a week apart. She also had a bronchoscopy this week to check her airway for obstruction. The results came back great and thankfully her breathing is expected to improve as her muscle tone improves. Speaking of muscle tone, we met with the PT for the first time this week and I really like her! She suggested that in a couple months Lillian have 2 PT appointments a week on top of her one OT appointment. Whatever it takes to get her strong we will do. Plus, it's fun for Lillian, she just thinks we're playing :).

Some firsts this week were: First Thanksgiving, first trip to Madison to visit her extended family, first time in a restaurant (Opie Taylors on the square downtown for take-out), first Christmas lighting and Christmas tree, and first tailgate (IU v Purdue!).

There are so many times I think "I should write a blog about this" but never take the time to do it. One of those things I should devote a whole blog entry to is my husband. I can't even begin to describe how helpful and supportive he is. He is a GREAT dad to Lillian and a wonderful husband to me. There are times when I want him around that he isn't always there, but when I NEED him, he's by my side. He gets up for late night feedings so I can pump while he takes care of Lillian. He takes her during the day when I need some "me" time or when she's getting heavy, or just need a break. He shares his feelings about being a dad to a little girl with special needs. He apologizes when necessary. I just love him.

Here are some recent photos of Lillian:

Deep Breaths.

I don't know if it's just sinking in more, or if it's hormones, or just the roller coaster that I'm forever going to be riding, but this has been a very tough emotional week for me.

The older Lillian gets and the more she's becoming her own person, I can't help but just feel so sad that she is living a life that is going to be so hard for her. I look at her and just love her so much. I want so badly for everything to be the way we expected it to in the beginning. I want her to have everything that her peers will have. I want her to be active in school and have friends and boyfriends and get married. I want her to travel and be adventurous and go to college. The reality of her life is so different from what we want for her.

I struggle with figuring out how she brings me so much joy, when the thought of her life makes me so sad. I can't even put into words the love I have for her, and the joy she brings when she smiles or discovers something new, or even just when she sighs after a big yawn and rubs her eyes. I was doing so well not stressing about the future, but it's so hard to not think about when I'm faced with all the doctor appointments and therapy sessions and even though I know it's not a lost cause, sometimes it feels that way.

So much to say, so little time!

If only I could convince myself to take the time to write nightly reflections! (But just typing that first sentence I had to stop and talk to Lillian. She's quite fussy when she's fighting her morning nap!)

Lillian turned 8 weeks old Thursday and she's been showing so much personality! She loves it when we make faces at her, and even gave me a little giggle this week when we were playing. She stays awake longer, but sleeps through most of our trips outside the house. As soon as we get home she's wide eyed, alert, and ready to be entertained! This week we took our first trip to the park, and went for several long walks downtown with Zoe and Ayla.

Some pretty exciting news on the medical issues: I've contacted a doctor in Florida that has been a HUGE help providing so much information on ways to help Lillian, and giving us so much hope for the future. She is sending me information on supplements that will increase Lillian's energy and alertness since she's primarily getting breast milk. If we fed her formula, she would get some of them from the formula, but I would rather her get my immunities from breast milk and give her the other supplements separately.

She also answered some questions I asked about Lillian's future as an independent adult. She thinks Lillian will more than likely be able to live independently, and even suggested that they WILL have a cure by the time Lillian is an adult. Hearing that from someone who is currently researching Prader-Willi means so much. I truly believe there will either be a cure for the hunger issues, or something that will greatly help them manage their hunger problems... meaning she will be given the opportunity to have a healthy happy adult life without the need to be monitored by a care taker.

I'm so convinced that Lillian will have a fabulous life! I look at her and can't see it any other way. She's already doing everything she's expected to do, with the exception of her eating through the feeding tube. When we give her the chance to eat from a bottle she improves every time.

There are times I question what God's plans are for our future. I wonder if He changed His plans for us when we were pregnant with Lillian. It's crazy to think about this, but around 20 weeks I had unexplained bleeding and begged Him not to take our baby from us. We were supposed to go on a cruise 2 weeks later (which happened to be in the beginning of the swine flu outbreak in Mexico) and canceled the trip because we didn't want to risk more bleeding or have something happen that could jeopardize the pregnancy. Normally I wouldn't be so cautious and it was a last minute decision to cancel the cruise knowing we would lose the deposit we paid... Our doctor was pretty adamant about us staying home too. I can't help but wonder what might have happened if we went on the cruise. Yes, I know this is crazy, but sometimes I wonder what would have happened. Would I have gotten swine flu? Could we have had an accident snorkeling, or on another excursion? I'm so thankful for being given Lillian and the way things turned out, but it's caused me to wonder if God changes plans when he answers our prayers...

Some pictures of Lillian this week: