Making blog private

I've decided to make the blog private. I don't like the idea of having a lot of our information and pictures out for the world to see. I've been going back and forth on this even though I only seem to post every few months. I would like to post freely without having the thought in the back of my mind that someone might steal photos of my kids. Yes, it can happen on facebook or shutterfly or any other site but having one less "public" place would ease my mind some. If you'd like to continue following my somewhat irregular posts (I have good intentions of posting more often!), then send me an email. Or better yet, if you are on Facebook and we are not "friends", send me a friend request. With that said, I should be posting an update this weekend..promise!

Mid-Year update

Okay, so I’m a little behind on posting an update but that’s not a shock to those who know me. I go to write and update and then something else draws my attention away and I never seem to get back to it so for that I’m sorry. So here’s what’s been going on lately.

Katelyn’s birthday party has come and gone and she had a lot of fun. We had an Over the Rainbow theme to celebrate. The inspiration for the theme came to me partially from Barney and partially from Pinterest. Katelyn loves Barney but I was not too keen on having a Barney party and I’m pretty sure the guests were appreciative of that as well (have you heard the Barney songs???). So I took the “rainbow” image that is in every episode and drew on that. It was a very colorful party with all the colors of the rainbow spread throughout the downstairs with balloons, banners, the food and even the cake. I had a shirt custom made for her and was able to order a rainbow colored tutu wholesale from one of my online friends. All of our family and close friends showed lots of love for Katelyn with the special gifts they gave her and we are so very thankful for everyone. Several weeks after her party we were finally able to get Katelyn’s birthday portraits taken and they turned out wonderful. I’m still working on sending those out so if you are on our Christmas card list, you should get your pictures soon (I had to order extra prints of my favorites).

Katelyn had her 2 year well check in late April and she is 24 lbs. & 35 ½ “. She’s a smidge taller than Ryan was at this age. He was 27 lbs & 35”. Developmentally she falls right on the charts for a 2 year old with her fine motor skills, social skills & speech. We are having early intervention still monitor her every three months due to her Omphalocele. I want to make sure she isn’t lacking in areas especially her fine motor and gross motor. She’s done exceptionally well despite her defect and even recently began laying on the floor (both the hardwood in the kitchen and carpeted area in the den) on her stomach and coloring in her coloring books. She’s still a drama queen and probably in about a year she will be running the show between her and Ryan. Even now when he does something to her, such as take away a toy, she lets it be known by running to tell us or screaming until he gives it back to her! We started compression on her O about 7 weeks ago. We have an ace bandage that we wrap her O with and tighten it as much as she will allow. We made a gradually transition into it and after about 4 weeks her O was looking smaller. Then a couple weeks ago on our “staycation”, we were at Dean’s mom’s house and Katelyn started telling us her tummy hurt. She was very tired because we had taken the kids to the pool the day before and it was also nap time for her. She cuddled up against me and went to sleep. When she woke up she continued to complain and started crying. We took her home and I took off the ace bandage and snuggled with her in our bed. She went back to sleep and when she awoke she did not complain of her tummy hurting. Needless to say, it scared us and we kept the ace bandage off for the next few days. Once we did so, her O began getting larger again. So we were back to square one. I eased her back into the tightening and so far she hasn’t complained of her tummy hurting. She definitely will tell us when it’s too tight so we can only make it but so tight. We go next week to see her surgeon so it will be interesting to get his opinion, although I’m fairly certain he’s just going to say keep doing what we are doing.

Now that I mentioned our staycation, I guess I should tell about some highlights. My sister and brother in law came in town so we spent the whole week off from work doing fun things with them and the kids. As I mentioned previously, we went to the pool at the Y and the kids had a great time (well, Katelyn had her moments but overall she was good). We also went to the Children’s Museum, rode a ferry across the river, went to a painting studio and the kids painted pottery, went to the beach, saw one of my best friend’s in North Carolina that I had not seen in years and had never met Katelyn, went to the Grave Digger monster truck shop, went to the Outer Banks and flew kites on the sand dunes (in Kitty Hawk). We also spent time with the whole family for Father's Day and got to visit with my 6 week old niece. The kids love their new cousin and Ryan is looking forward to her growing up and having another playmate. The kids (and us) were exhausted each night and slept so well.

Ryan is now a Kindergartener graduate. I can’t believe he will be 6 years old in about 3 weeks and a 1st grader in September. He LOVED Kindergarten and it’s been such a joy to see him grow. He is like a sponge and just absorbs everything and talks..boy does he talk. Which is wonderful; I couldn’t have imagined 4 years ago that he would be talking so much. He loves to draw and read. He insists on doing everything himself, right down to making his own breakfast (as long as the stove is not involved).

Ryan starts summer camp this week and was very excited this morning. We’ve enrolled him in the weekly camps at the YMCA and each week is a different theme so they will do different activities related to the theme each week. He had a great day of swimming, playing and meeting other kids. He will go this week and then won’t go again until the last week of July. One of my best friend’s will be taking him for a couple weeks and doing fun activities with him and then the week of his birthday my parents will do something fun with the kids and Dean & I are taking off work for a couple days.

I’m sure there is more to write about but I will close for now. Hope everyone is having a great summer!

Katelyn dancing

My girl LOVES to dance and I never tire of seeing her do it. She's starting to try and jump now because she sees Ryan doing it all the time so she really has a "bounce" to her dancing now. We will put on the music channel on the TV and the kids will just go crazy dancing. Here's a video of Katelyn (and you see Ryan at one moment) getting her groove on with Mickey!

Omphalocele Awareness Day

JOIN US AS WE CELEBRATE OMPHALOCELE AWARENESS DAY

JANUARY 31, 2013

Who are we? We are the Mothers of Omphaloceles, also known as The MOOs. We are parents, grandparents, family and friends, over 600 strong, who are all connected by a birth defect known as omphalocele. Some of us are anxiously awaiting the arrival of our special “O” babies. Many of us have young children and teenagers who were born with the condition. There are several of us who were born with an “O” and are now grown adults, some with children of our own. And there are the parents of “O” angels. We have come together from all across the world to form a community of strength and support. Today we are asking for your help to spread awareness about omphalocele.

What is an Omphalocele? It is a birth defect in which the abdominal wall does not close properly, allowing abdominal organs to protrude into the umbilical cord. In some parts of the world it is referred to as an exomphalos. It is often detected between the 12th and 20th weeks of pregnancy. It is estimated that a small omphalocele occurs in 1 out of every 5,000 births, a large omphalocele 1 in 10,000. At this time there is no confirmed cause for the condition, and no cure.

There is still a lot of misinformation about omphaloceles. With the latest treatments the prognosis for our children is good. But many medical professionals are unaware of those treatments. Many of us are told that our babies will not survive. Many of us are advised to end our pregnancies. We are told that our children will most definitely be born with additional complications. But what we have learned in our community is that our children CAN and often DO survive when given a chance. With advancements in pre-natal screening and treatment options, including surgery and non-operative management (aka Paint and Wait), the mortality rate is drastically reduced, and more of our babies are living and thriving.

Today we are asking for your help in sharing this message. We are asking all of our friends, families, associates, medical team, and children to wear white and black in honor of our courageous children and in memory of our “O-Angels” and their families, January 31, 2013.