A new milestone!

Guess what PP did tonight during dinner?!

*drum roll please* 

She fed herself with a fork! No poking herself in the eye! I am so excited!

This is a skill that PP has been working on for a long time, about 5 months now. It's AWESOME because it means that she is gaining more fine motor skills in her hands and arms! Accomplishing milestones is important because she's showing us her strengths; then the teachers, therapists, and myself can figure out the next milestone that she will work on.

As a wee baby, PP had 'low muscle tone' which meant that she had weaker muscles than other kids in her age group. She could hold her head up by herself when she was about 3 months old, started to sit up by herself at about 9 months old, started to crawl at about 16 months, and now she's working on walking at 22 months. These gross motor skills can translate over to fine motor skills, and vice versa.  She is able to gain more control of these fine skills partly because she's been working particularly hard on gross motor skills lately, thanks to rigorous Physical Therapy and tireless efforts from Mama and Papa! If you're a person with low muscle tone, achieving the same physical result as a person with normal tone means you need to work twice as hard. It's a lot to do, PP gets tired and mad quite often, but it's definitely worth it. Reaching goals is always a good feeling!

Cuddling in my bed, eating a caramel apple pop, is the best way to celebrate!  

Best wishes, pleasant dreams! 

The latest and greatest medical mystery, presented by PP.

Penelope has never been an easy kid to figure out, for anyone.

Before she was born, no one could solve the mystery as to why she wanted to come meet the world when I was 26 weeks pregnant. Even with insanely strict bed-rest and an unusual cocktail of 'anti-contraction' medicines while staying in the hospital, no one knew why she stayed in my tummy until 36 weeks because I would contract on a daily, if not hourly basis the entire time. After she was born, it took a very long time to hammer through the countless health problems she encountered.  RSV, E-Coli infection, torticollis, apnea, low muscle tone, acid reflux, silent aspirations on thin liquids, developmental delays, surely I'm missing something but I think you get the idea. Eventually we got a handle on things.

PP was diagnosed with Weaver's Syndrome on March 7th, 2011, at 18 months old. The diagnosis didn't explain all of her ailments, but it helped us understand a lot of what was going on with her. Thankfully, she doesn't have such a long rap sheet anymore. Her health has improved dramatically, and we are down to only one prophylactic medicine a day. She has a great team of doctors at the hospital to keep tabs on her, the two most important are her Genetics doctor and Pediactrician. PP has an absolutely amazing team of teachers who visit her on a weekly basis, without them I honestly don't think that she would be where she is today.

At 22 months old, PP looks like a 3 year old. She has been in the 97th percentile for her peer group since she was a wee baby. She now wears 3-4T clothing. When she was 10 months old the doctors measured her bone age, which turned out to be 30 months. Considering that equation, she is 22 months old now with the bone age of about a 5 year old. This is another area that is difficult to understand and even more difficult to explain, so that's that for that.

I am getting to a point, I promise.

I really just wanted to give an update on her latest health anomaly, but without a proper introduction to the life of PP you couldn't appreciate it to the extent that I do. PP got a rash. Just any rash? Of course not! It looks like hives, but these hives are HUGE and they cover very large areas of her body. They are red and white at the same time, they are swollen and hot. She doesn't seem bothered by them whatsoever, so I am happy about that. She was tested for numerous things including a UTI, Strep, this crazy bacterial thing that I can't remember the name of, blah blah blah. The doctors don't know what it is! I am always amazed at the amount and variety of medicine this kid has taken in her life, thank you pharmaceutical people for making things fruit flavored. The most recent cocktail, concocted by multiple doctors at different times during this week, includes a prophylactic antibiotic, steroids, Benadryl, and some sort of antihistamine blocker. This has been an ongoing problem since Saturday and today is the first day she woke up without giant hives covering her poor little baby butt.

Say, "HOORAY!" I am! *doing happy dance*

So, that was a long explanation to a fairly simple question, but just know she and I are doing well! We are getting ready to have a play date with some of our favorite friends, and then we will be visited by the Physical Therapist in the afternoon. Wishing everyone a happy day, peace out.

I don't know how to do this...

I've never done a blog before, so bear with me. I'll get the hang of this eventually and I'm guessing it will turn out to be pretty entertaining.

My mom has been bugging me to do something like this for a while. Write a book, keep a journal, or write in a blog about my daughter, Penelope. I guess the blog thing seems most appropriate for all intents and purposes. The reason my mom wants me to keep some sort of record of Penelope ( PP is the nickname of choice on the interwebz ) is because she is a child with Special Needs. My PP has Weaver's Syndrome.

First things first, PP is a very social and lovable girl. Don't feel bad for any of us, including Papa Chris, because we live a very happy and active life in spite of the troubles we come across. We have a fantastic, supportive network of friends, family and teachers who help us every step of the way. Our little family in itself is very strong and the three of us have a bond that is outta this world! The reason I feel compelled to tell more people about Penelope is because she happens to be one of the most interesting and inspiring people I have ever met. I have learned more from her than I have ever learned from anyone, and she still manages to teach me something new every day. I actually used the word 'phenotypic' in a real sentence while talking to a doctor today...WHAA?! It's nice that she is such a good teacher, because there is very limited information about this crazy thing called Weaver's Syndrome.

Here is a website that sums it up pretty nicely: http://www.healthline.com/galecontent/weaver-syndrome

Not very much information is available to read on Weaver's Syndrome because it's relatively new in the medical world. It hasn't been around for long enough to have a lot of longitudinal studies completed so most of what I know only covers up to around ages 5-10. I guess the most interesting part to me is the fact that although it is a genetic disorder, the gene is not inherited and there is no definite gene marker than can be tested for Weaver's. It doesn't really make sense, but the further I go into parenthood I find that's the case with a lot of situations in life. Being a malleable parent is a valuable thing.

I am part of a group on the interwebz created by parents of children with Weaver's; I find that the information on the posting board there is more useful to my daily life than the little blurbs I can find on Google if I have an hour to waste (which I don't). We also attend a class in an elementary school every week for children with Special Needs so PP can interact with other children and I get to talk with parents who are going through experiences similar to ours. This blog is another avenue of communication I have decided to open up, just to see what happens I guess. I would also like other people to learn something from my PP, because she is more than a Special Needs child, she's a Weaver. And she's cool.