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.

New Year Update

I hope everyone had a nice holiday season & are enjoying the new year. The kids are doing well and are still playing with the toys they received for Christmas! I know in years past we have bought something thinking Ryan would love it and he does, for about a day and then it never gets played with again! Haha! I guess that’s a benefit of having 2 kids; if one doesn’t like it then the other might. Katelyn’s favorite toy by far was/is a baby doll & stroller. My friend got her one and so did my parents. We are thankful for the two because Ryan always wants to play with her toys too so now he can push one and Katelyn can push one. It’s quite funny watching her play. She puts the baby in the stroller, buckles it up, gets her purse (or a tote bag) and starts strolling. Sometimes she will even come over and give us a hug, expect a kiss and say bye! If I can ever get her on video doing it, I definitely will. Ryan’s favorite toy(s) are his Lego vehicle sets and his Home Depot workbench. He loves to build so these are perfect.

Katelyn will be 22 months old in 4 days. That much closer to being 2 years old! Wow. Time has gone by so fast. She’s talking a lot now and is still saying new words every day. I try to write down all the words she is saying but have not done it lately (imagine that). I know she is saying at least 50 words and will string together 2 words such as “daddy work” or “what’s dat”. We were not scheduled to go back to see the surgeon until next month but Katelyn started itching at her O. She has the protector belt on all the time, other than for short periods of time like when we’re changing her dressing or for bath time so she can’t actually scratch her O but she was trying. So, we wanted to get it checked out. The surgeon determined it was probably just dry skin (as we all get in the winter) and gave us some aquaphor to put on it. That stuff works great! Up until a couple days ago, her O looked so smooth and had no ulcers developing. There is one part that is breaking down again and starting to bleed but we go through this every few weeks. It will heal up after we put antibiotic ointment on it for a couple days. As far as the size of her O, it is smaller than it has been, although she hasn’t gained much weight. She has probably grown taller though. She is still holding steady at 23 lbs. We are doing what we can with getting her to eat more calories but she’s like any toddler and sometimes just doesn’t want to eat. We’ve started giving her Pediasure for some extra calories so that may help. I feel like genetics is playing a big part in her size because Ryan is the same way, tall & skinny, and I’m tired of stressing over it. She is getting constipated every so often so we are adding Miralax to her milk mostly every day. I stopped for a while and then she ended up needing an enema (poor girl) so I’m trying to be diligent about the Miralax.

As far as her sleeping habits are concerned it is still wonderful. She is mostly still taking 2 naps in the day during the week and she will take one long nap in the afternoon on the weekends, since we are usually out running around on Saturdays and go to church on Sundays. She still goes to bed by 6:30 (although sometimes she plays in her crib for 15-20 minutes) and wakes up between 6-6:30. There was a couple weeks that she was waking up between 5-5:30 am and would not go back to sleep. I knew it was a phase because Ryan did the same thing but boy was that hard..especially on the weekends.

In a nutshell, other than just having a big tummy, Katelyn is a typical toddler. She knows how to throw tantrums, especially when she wants it her way and no other way. She dislikes the word “no” , knows how to open and close doors, climb on the couch and up the stairs, get under her brothers skin by taking his toys and has us all wrapped around her little finger. We may be starting on a new journey soon…the potty. That has yet to be determined though. She was saying potty for a couple weeks and would grab our hand and make us go to the bathroom with her. We didn’t have a potty chair for her so I would just sit her on the big potty (with her clothes on) but she would just get off immediately. So, we took her out and she picked out a potty seat that had a frog on it but nothing has happened on it other than her sitting on it for a couple seconds every now and then. I’m not forcing the issue whatsoever.

We got a little snow last Friday and as soon as I got home from work, Ryan was anxious to go outside. Even though it had only started about 45 minutes before I got home, it was coming down fast and everything was covered. It was pretty and Katelyn had never been out in snow, so I caved. What I hoped would only take 10 minutes or so to get ready, took about 30 minutes. I could only find one of Ryan's snow boots. While I was tearing up his closet by searching, Katelyn was busy pulling out ALL his books from his totes. I finally gave up and told Ryan to put on his Stride Rite boots (similar to hiking boots). Then I got Katelyn double layered up, had no problem finding her boots, but then could only find ONE glove. Really? Why can't I just be organized!! Finally I gave up and put two pair of socks on her hands. I was more than ready to get outside because I was sweating! The kids had fun and I got some pictures.

Fall 2012

We weathered Hurricane Sandy in our area pretty well. It did not make landfall in Virginia but we certainly felt the effects from it. The wind and rain were really heavy Sunday & Monday. Katelyn slept through it all during the night and Ryan, who is a light sleeper, slept with me while Dean slept in Ryan's bed. Speaking of weather, we've all been under the weather during the past month. Ryan had it first. The congestion, coughing, runny nose. Katelyn got it next but a couple days after she started with it, she woke up and her breathing was labored so I took her in to the pediatrician. Her lungs were okay but the doctor we saw felt like she had croup. Basically, it's a viral infection that is characterized by a "barking cough" because of swelling of the vocal chords. He gave her a dose of liquid steroid and I still had some of her Albuterol inhaler from when she was sick back in the Spring so I gave her some puffs of that. She was much better within a week or so. During the week she was getting better, I started getting worse. The La-Z-Boy was my friend for several nights. I'm finally on the mend with just a slight lingering cough. My mom also had the same thing but was able to get an antibiotic from her doctor. Hopefully, Dean will be spared. Katelyn hasn't been back to the surgeon since August. Nothing has changed with her O. It's still the same size it's been for at least 6 months. She's grown and her O just grows along with her. She's getting a new protective wrap because the ones we had made for her back in early Spring don't fit her O completely since it has grown. We see the surgeon right before Thanksgiving and I don't suspect anything different will be occurring. She will probably cry like she normally does when the surgeon comes into the room so he won't be able to access the O, other than the outside. He would like to push on it to see how much of the contents would go back inside of her (for lack of better terms) but since she gets upset, he can't. So, we just wait. Maybe when she's able to fully understand what is going on and talk, she will be less likely to become upset just at the site of him. It's not that he's scary..he's one of the sweetest and funniest doctors we've met, but he's very tall and has somewhat a deep voice. Although, she cries at the pediatrician's male nurse too and he just the opposite. She's becoming such a hoot. She will sit down and read (in her own jargon) books to her bear. She loves books! So much more than Ryan did at her age. Ryan was and still is into puzzles. He was very good at puzzles at her age and could easily do a 6-9 piece puzzle without our help. Katelyn will do puzzles but it's not the first thing she reaches for when she's playing and she needs help getting the pieces in. She and Ryan love each other but definitely are like any brother & sister and need their own space. She still likes carrying purses & totes around and pretend she is going shopping. She also likes to put everyone else's shoes on. She tries to put her own shoes (and clothes) on. She also loves to dance. I can totally see her in dance class in a couple years. I can't wait!! We're having Katelyn assessed sometime this month for speech. When I made the appointment, she wasn't saying many words, probably 5 words which was right on target for her age (she was a few days from 18 months). But by 20 months she should have 20 words. We didn't want to wait that long so we went ahead and set up the appointment. I've started her on a strong Probiotic and a DHA supplement since then and within a week she had added two words and added a two word sentence back that she had stopped saying. She has about 10-12 words now and seems to be adding new words every week. She understands pretty much anything we ask her to do; go get her shoes & socks, throw something in the trash can, go upstairs, time to eat. She knows the nightly routine of bath, dinner, a little play time unless she tells us otherwise (by crying or rubbing her eyes), going upstairs and changing her dressing (which she likes to help pull off the gauze) and getting her pj's on. I still love the cuddle time and rocking her for a while before I put her in her crib. She sleeps great at night and we are so blessed for that...now she needs to pass that onto her brother! The kids had a great time at the pumpkin patch. It was nice to get out of the house for a couple hours before the bad weather rolled in. We had been stuck in the house for the past couple weekends due to us being sick so the kids were ready to run around. Katelyn picked up the smaller pumpkins and would set them down and want to sit on them. Did I mention she likes to take almost anything and make it a seat? It's quite funny. Ryan got his face painted as a pirate and played on the big play set they had set up. We took a hayride and enjoyed looking at all the animals.

Halloween turned out to be a little chilly but we just put extra layers under the kids costumes and they were fine. We went to my parents neighborhood again this year. I was in a rush to get out of the house, stop by to get dinner on the way and over to my parents house that I forgot my camera. I only had my cell phone camera which doesn't take very good pictures at night. Hopefully my dad got some good ones on his camera and I can share in the days to come. Ryan was Batman & Katelyn was a Strawberry. Ryan definitely had it down and was practically running up to the houses. After a few house, Katelyn knew what to do if people held out the basket of candy..she grabbed 2 pieces! ha, that's my girl!

Kindergarten!

Ryan is now officially a Kindergartener! I was so nervous for him Tuesday and still am today but at least today I’m not crying. Yes, I shed a few tears Tuesday as we were driving to school and I about lost it when I walked out of his classroom and looked back to see him coloring at his table but I held out until I got in my car. We all worry about how our children will handle school but for a child like Ryan who has an auditory processing delay and is very shy in new situations, it’s an extraordinary amount of worry. Only time will tell if we made the right decision in starting him in public Kindergarten this year, but until then I will enjoy coming home from work and letting him tell me about his day.

When he got off the bus Tuesday, he was so excited. He ran up to my mom, Katelyn and I and was smiling from ear to ear. He was so happy that we were all there to greet him. When we asked him about his day, he proceeded to tell us everything he ate for breakfast and a snack, told us he colored a picture, painted a hand print and saw recess (I gather they took the class on a small tour to show them the playground). We then took him out for a special lunch and I got him a Lego car because he is really into building the different Lego vehicles that are out now.

His teacher seems very enthusiastic and eager to teach the younger kids. She has been teaching for 19 years but to 5th graders. There will be an open house in a couple weeks so we will learn more about what his day will consist of, what the expectations are and just have more one on one questions answered by the teacher. Since Kindergarten is only a half day, he will be riding the bus home and my mom will be watching both kids until I get home from work. Hopefully, she won’t go too insane! Ha-ha! Katelyn LOVES Ryan and will follow him around everywhere and want to play with whatever he is playing with or do whatever he is doing (eating, playing with his Leap Pad). While Ryan loves his sister as well, of course sometimes he just wants his space. He doesn’t like to be upstairs by himself but since he will be spending more time at home, he will need to get used to being upstairs or will have to go to the kitchen to play.

Speaking of Katelyn, she is getting 3 teeth in. The 2 beside her two front bottom teeth and a canine tooth up top. I haven’t checked in a few days but I think they may have all broken through. She definitely was in a better mood this week. I suspect her other 3 canine teeth are not far behind. Once she gets those, then she will have all her teeth except the 2 year molars. I guess some kind of stomach virus is going around. Ryan got sick Friday night as he was getting ready for bed and it lasted all through the night until around 4 in the morning. We actually thought it was food poisoning because he had a party at his daycare. However, yesterday afternoon Katelyn starting throwing up and it lasted until about 8pm. Thankfully, she slept through the night without throwing up and seemed to do well today with just eating bread, crackers, applesauce & drinking water & pedialyte. I gave her some yogurt tonight too. As much as I hate seeing my little girl sick, I have decided that maybe it’s a good opportunity to let go of the bottles. She drinks water from sippy cups but we’ve still been giving her bottles of milk at naptime and at night before bed. Tonight she whimpered for about 30 seconds and looked around while I rocked her but then calmed down. Let’s hope it continues to go just as smooth the next few nights.