Oh My Gosch....the first post!

Oh My Gosch(mis-spelling intended).....2008 has been crazy...and it's not done yet! We've had alot of major events occur this year and it's been nearly impossible to keep everybody up-to-date. I created this site and this entry specifically to get everyone informed and save our phone bill (he,he!!)

So... here's my attempt to get you all caught up. I'll try my best to be brief - but for those that know me - - this might be quite the task. I'll then try and post 1-2 times a week on Aubrey and Molly updates and in the event Chris and I have anything exciting to share - I'll let you know that too!

Anyway....here goes.....in chronological order:

Start Process of Building a New House
Chris, Aubrey and I were loving life and were anticipating the birth of our second child in May. We knew that we needed more room than our existing house could provide and so we started the process of building a house. Chris really could provide a whole entry just on this - but I'm trying to be brief - so let's move on.

Aubrey's Diagnosed with P.V.L and Angelman Syndrome in March 2008
After some concerns with Aubrey's development and missed milestones of babbling, crawling, and play skills, we consulted a developmental specialist. The MRI indicated that Aubrey has PVL, which is mild brain damage that controls motor skills. The blood tests came back 3 weeks later giving Aubrey a diagnosis of Angelman Syndrome(AS). In the words of the doctor "a double whammy."

Angelman Syndrome (AS) is a rare neuro-genetic disorder characterized by intellectual and developmental delay, lack of or minimal speech, seizures, sleep disturbance, movement and balance problems, and frequent laughter or smiling. AS is caused by a deletion or inactivation of genes on the maternally inherited 15th chromosome. There are estimated to be between 1000 and 5000 cases in North America. For a more in depth look and explanation of AS - please visit the Angelman Syndrome Foundation site at the following link: http://www.angelman.org/angel/index.php?id=75

Aubrey will require 24-7 care for the rest of her life - yet there are so many more opportunities for people with disabilities than say 20 years ago. With the advances in medicine, therapies, and the general acceptance in today's educational system – she has a much better chance to live a long, active, and fulfilling life. Aubrey is a joy to be around and it is impossible NOT to be happy around her or start smiling. She may have her challenges in life - but she will always be there with a smile and non-stop energy to tackle them. She provides a constant reminder to cherish life and its gifts.

Molly is Born May 7, 2008
Continuing on the roller coaster of life, the lows in March were soon followed by a high point with the birth of our second daughter Molly. She was born on Wednesday, May 7th at 9:00 am. She was 8 lbs 8 oz and measured 20 inches long. Much like Aubrey, she had a TON of hair only hers was dark brown instead of blonde. Now the first question people want to ask is "she okay" meaning does she have AS too. No she does not, while we haven't done the official blood work to prove it - there was less than 1% chance she'd have it, and we can already see the difference in her vocalizations and strength of movement that Aubrey did not have. Each milestone she passes is a true blessing. She'll be a great model for Aubrey and while it's a little crazy to have them only 18 months apart - I think it will be the best for both of them.

Summer: My brother Seth lives with us this summer while he interns at Union Pacific - FULL HOUSE!
The day we arrived home from the hospital with Molly, my brother Seth moved in with us as he was interning at Union Pacific..why not! We had a full house but it was great to have Uncle Seth around. He got to change his first diaper and see Aubrey and Molly grow so much over the course of the summer. We're glad that we could have him stay with us.

Aubrey's Seizures start in July
As I mentioned earlier, seizure disorder is one of the characteristics of Angelman Syndrome. The statistic is that 80% of AS people have seizures - we were hoping Aubrey could be part of the 20% however that was not the case. She had her first partial complex seizure in late July, she had a few more of those and a large amount of drop seizures(at one point up to 20-30 a day). Since that first seizure we've been on a journey of finding the right medication and right dosage that will control her seizures with as little side effects as possible. We have been blessed with great medical teams in Omaha and are glad to report that Aubrey has been seizure free for just about a month. We will always have to keep a close eye on this though and might as well have a neurologist on retainer!

Selling our House
To fill our life with even more excitement (the PC term I use for stress), in August we embarked on revamping our house so that it could "POP" as our real estate agent puts it. We put in a lot of time and money dry-walling, painting, cleaning, adding new window treatments, replacing hardware, light fixtures, and windows. It was a ton of work and is no small feat with 2 infants - but well worth it. We just signed papers yesterday to sell the house and we'll be closing in late October!!! Out new house won't be ready until Nov/Dec time frame - - so we're working on our interim living situation. . . ahhhh it never ends!

Summary:
2008 continues to be a roller-coaster of joys and challenges - and that is one thing that we can all relate to. We have been blessed with a great family, wonderful friends and we know that the rest of 2008 will be GREAT!

That's all for now....