Prayer request

Last year I found an online support group for Mother's of Omphalocele babies. MOO's as the facebook group is known as, brings together not only mothers of Omphalocele children but fathers, grandparents, siblings and even adult survivors of Omphaloceles. I have come to rely on knowing that someone in that group will have answers or advice for my questions and I give my experience from Katelyn's "O" as well. We get to "know" each other pretty well and may even consider them like an extension of our family even though we have never met many of them in person. We share each other's joyous occasions like when our miracles start to walk but also share heartbreak such as losing a miracle child. In the past year I have come to know a mommy of twins. One of her twins, Elizabeth, was born with an Omphalocele like Katelyn. The twins were born on my birthday two years ago; just four months after Katelyn was born. Through her posts and pictures I got to know about her daughter and enjoyed seeing her sweet smiling face. She went through closer surgery several months ago and had a long hard recovery. Last week she was finally able to go home, play at the park with her sisters and they were trying to return to normalcy. Unfortunately, she developed a virus that she was unable to recover from and passed away suddenly Tuesday morning. I am beyond devastated for this family. I have cried and cried over this news and prayed for them countless times over the past several days. When Katelyn had her surgeon appointment a couple weeks ago, we talked about her closer surgery. The surgeon felt like she would be ready in a month or two but we chose to go ahead and wait until early summer. Dean and I do not want our child in the hospital during the winter months (think sickness) or near the holiday. She has already had croup once (last month) and I suspect it won't be the last time she is sick this winter. We want her as healthy as possible before and after surgery. So, when I heard about Elizabeth's passing, it just hit me like a ton of bricks and made me even more anxious about Katelyn's surgery. I know every person (child) is different and there were other circumstances that played into why she had such a long recovery but it is still scary. Please say many prayers for this family as they grieve and remember their precious little girl. Much love to everyone.

September update

Can you believe it’s September already? We had a pretty busy summer but it’s now back to school, doing homework and running errands on the weekend. We tried to do something fun with the kids every couple weeks during the summer…sometimes that didn’t pan out depending on the weather but I think we all had a good time. After my sis and brother in law went home after their visit, Ryan started camp at the Y and thoroughly enjoyed it. It was a new theme each week so he was able to learn about and have hands on fun with cooking, time traveling, awesome art and many more things. He also got to swim almost every day and most importantly, burn off energy by playing outside! There were a few weeks that he did not go to camp like the week of his birthday but we (or my parents) did other things with the kids. Other Places we went this summer; Went to Busch Gardens, Kings Dominion, Williamsburg, Outer Banks. Katelyn is 35 ½” (just a hair under 36” with her shoes on) so she was able to ride quite a few rides at both theme parks. Ryan just loves all the rides and would stay until the park closed if we were able to! He is tall as well and just under 48” which is the minimum height to ride the Lochness Monster at Busch Gardens…but I would never let him do that right now! I mean, he is only 6! Maybe when he’s 10 or something…haha!

Ryan is now a 1st grader! Where did my little preemie prince go? Time sure does fly by when you have kids. He talks ALL THE TIME now. I look back on some of my old posts when he was 2 and barely talking a few words and think if I had known then I would have nothing to worry about 4 years later, life would have been a lot less stressful. He loves Lego’s, board games & card games and of course still loves playing with hot wheels cars! He also loves to read. He will read road signs, signs when we are shopping and all kinds of books. Imagine our surprise when at his 6 year pediatrician appointment in July, he could only (barely) read the 3rd line of the eye chart! The 3rd line of the eye chart only has 3 big letters! I was dumbfounded. Besides the fact that he would complain of a headache every now and then, there was no indication he had blurry vision. He never sat close to the TV, never squinted that we saw and certainly never told us he couldn’t read something. We passed off his headaches as being dehydrated (since after all he was at camp all day) or allergies. So, off we went to get him glasses. He was pretty excited about the idea of glasses at first but when they came in and he had to wear them all the time, he was less excited (about them). The good news is it’s been about 3 weeks that he has been wearing them and he has adjusted to them well and does not take them off several times a day as he did in the beginning. Dean bought him a strap to wear if he wants and our next item to buy is sunglasses that clip on.

Big news for Katelyn as well! She is now in preschool 3 days a week! I was very surprised at how well she did on her first day. The teacher stands at the door and has the kids walk in one by one by themselves as the parent is telling them goodbye. I think the fact that she knew I wasn’t going to be there but that her Nana (my mom) would be back to pick her up helped a lot. At church, when we drop her off in the nursery she cries but I think it’s because she knows we are there (in the sanctuary) and just wants to be with us (wants us to come in the nursery and play with her). After about 30 seconds though she is fine. Her Omphalocele is getting smaller the bigger she grows. She is 25 lbs. now and right at 36” with her shoes on. The surgeon mentioned the S word (surgery) last month so sometime in the near future we will be looking at closure surgery. We would definitely like to wait longer and have most all of the contents of her O compressed back inside her. We also want to get over the winter cold & flu season before having to stay in the hospital. With that said, we’ll talk more to the surgeon next week at her monthly appointment about the procedure, recovery time, etc.

If you haven't read my last post about making the blog private, please read it. I'll be making the blog private this week so please email me your email if you want to continue reading my updates..even though they are few and far between. Making the blog private might motivate me to post more pictures.

Here are some recent pictures:

First day of 2 year old preschool

First day of 1st grade

Pirate birthday party

Katelyn loves to read her books in her crib!

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!