Our CDH Awareness Day...

We started off the day by delivering Awareness Ribbons and informational brochures to Mommy's work. While at Mommy's work, Chloe had to tell Big Bird about CDH Awareness and she was Mommy's helper in disturbing the ribbons. Then we went to Chloe's art class and found out that people were surprised that one in every 2,600 live births are CDH babies. Then before going home for nap time, after a stop at the park, we went to visit the Easter Bunny!! This is the first time EVER that Chloe sat on the Easter Bunny's lap (not even Santa Claus has this honor). Chloe also shared CDH awareness with the Easter Bunny. Since it's still cold and flu season, Wyatt stayed home... but hopefully he will have this opportunity next year:))







THANKS TO VICKI JENSEN (JACK'S MOM) FOR MAKING THE SHIRTS FOR US. SHE MADE THEM FOR US LAST YEAR AND THEY STILL FIT!!!

CDH Awareness Day

March 31st was proclaimed CDH Awareness Day to help bring attention to this serious birth defect. It occurs more than people think and there is little research done about it. Here are some facts that from Sofie's Infospot which is an awesome site for resources-
CDH occurs in approximately 1 in every 2,500 live births.
This means about 1,600 babies are born each year with CDH.
Approximately 50% of all babies diagnosed with CDH will die.
About a third of pregnancies with prenatally diagnosed CDH are electively terminated.
After having a baby with isolated CDH the chance of having another child with CDH is 1-2%.

We realize we are very lucky to have Wyatt. When we found out that Wyatt had CDH in June 2007 we did not know where to turn to, what to do, or what the outcome may be. Not a day has gone by since June 2007 that I have not thought about CDH. It has impacted my life greatly and changed me forever. Please continue to keep all CDH families and Wyatt in your prayers.... especially for CDH angel babies, Addison and Maxton. CDH babies need numerous blood transfusions, so a good way to show your support is by giving blood. Wear turquoise this week and take a picture of yourself, your co-workers, friends, neighbors, etc... and e-mail them to gbkoger@yahoo.com for a future slide show!! Click here to read about Wyatt's CDH buddies who are also celebrating CDH Awareness Day-
Baby Sofia
Baby Claire
Baby Carter

I'll be up late tonight gluing together turquoise CDH Awareness Ribbons for everyone we know!! All for you Wyatt... You make me very proud.

Read about what we did last year.

Imagine

At two and half, Chloe's imagination is soaring. It is fun to watch her role play with her Little People with various voices. She role plays every where... especially when she is in the bath tub. She has a Daddy Duck, Mommy Duck, and Baby Duck and pretends that they walk to the park, swim, go on a boat, etc... Bath time is exhausting for me:)) In the pictures below Princess Chloe (don't tell her she has her princess crown backwards) is riding her horse (Wyatt's Leap Frog Toy). After she stops, she lets Prince Wyatt pet the horse. I just love when they play nicely together:) This is refreshing to watch, because moments before this Wyatt pushed Chloe and then Chloe pushed Wyatt back and I had to tell them to be nice to each other. I guess it's just the beginning!

Saturday afternoon activities:
Princess Chloe and Prince Wyatt and their horse (don't you see all that???)

Princess Chloe riding her horse with her princess crown backwards:)

Princess Chloe and Prince Wyatt petting the horse

Princess Chloe tells Prince Wyatt that he is allowed to pet her horse now:)


Sunday Update:
This morning Wyatt had brown stuff again in his spit up and when we vented him. We put him on Pedilyte for four hours and that seemed to do the trick. We have our x-ray and appointment with the surgeon on April 14th. The surgeon seems to think Wyatt reherniated again so we will find out on the 14th. A few weeks ago, I thought no way, but now with the brown stuff and spitting up more often it could be. If so, Wyatt would have a more complex surgery which involves using a muscle flap from his back to build a diaphragm and more surgeons in the OR. So I am really hoping these past episodes are just a symptoms from GERD... you can read about GERD on Carter's blog. Kellie describes GERD and the frustrations that go along with it very nicely.

Playing in the rain....

Abby says- Who says this would be fun??

I guess it's not that bad after all...

Hey! I want to splash!!!

Chloe splashing in the puddles....



What do you do on a Saturday when you are home by yourself with two kids... well the answer is obvious... go play in the rain!!! Kids need to play outside in all kids of weather. I am reading the book- Last Child in the Woods and I am planning on reading I Love Dirt! and Sharing Nature with Children. The book points out that direct exposure to nature is essential for a child's healthy physical and emotional development. The books says that a lack of nature in a child's life links to obesity, attention disorders, and depression. When I was little my fondest memories that I made with my neighborhood friends were playing outside in the woods... building forts, creating passwords, going for a hike to the stream, swinging on the tire swing, climbing trees, riding bikes, planting flowers, playing tag, waiting at the bus stop with my friends etc... I had an awesome childhood and everything I loved to do did not involve fancy toys or things. Because of that, I love to be outside in nature and I love watching the deer in my backyard:)) Having free play outside was the catalysist for my interest in science. Today, kids don't play freely outside as much. I see them ride motorized scooters and cars and being in the "woods" is dangerous. Also, it always amuses me to see a line of cars with the engines turned on waiting at the bus stop with their kids in the car because it's raining or it's too cold (I am going to eat my words, because I'll probably do this too:)) Kids need more free play! So today Chloe put on her rain boots for the first time (which she thought was super cool) and we splashed in puddles on our driveway. Don't worry, it was only drizzling, but I want my kids to have the mindset that rain isn't so bad and that it's fun to get wet and play outside!!! Tonight my parents are babysitting and Benji and I have our first date out since Wyatt was born. We are going to see the Air Force Jazz Band and have dinner at an Italian restaurant!!! Yipee!!! Our nurse called out last night and Benji stayed up with Wyatt and now he is out with his friends at a brewery so it may not be too late of a night:) We are still looking for a night nurse, so pass the word along if you live locally.

Mepiform

We finally have the Mepiform Strips!!!!!! They were prescribed to Wyatt Feb. 3rd for his ECMO Scar and they finally arrived in the mail. They are so hard to find, especially a pharmacy that accepts our insurance. We finally found a place in New Jersey and after a few calls to the insurance company and doctor's orders we got them. Wyatt's scar never fully healed. In fact a Keloid or Hypertrophic scar has formed and is very itchy for Wyatt. He may need plastic surgery in the future, but for now, we have the best possible solution. Mepiform is a bandage with silicon which has been proven to help reduce the scar significantly with it's special Saftec Silicone Technology. It does not hurt the epidermis when pulled off. We have a 6 month supply, so Wyatt will have a bandage on his neck for a long time... but hopefully in the long run we can avoid plastic surgery.

Birthday Parties

Jack's Party- Happy Birthday Jack!!!



Savannah's Party at GymJam





This past weekend, we attended two birthday parties. Happy Birthday to our friend Jack who turned four and Savannah who turned five. Jack had a puppett show birthday party (we missed the puppett show) but it was the first birthday party in which we brought both kids. Usually, I will just bring Chloe, but Wyatt came along too and he had a blast... especially when he was outside yelling "Chloe!!" as he was looking for her. It was so cute!! Savannah's party was at GymJam... Chloe ran around and had a blast and Wyatt got to participate too by jumping on the trampoline and sitting on the big ball. It felt really good to have a normal weekend as a family of four rather than dividing up.

Chloe Bear!

Nanny nick-named Chloe- "Chloe Bear" and these pictures remind me of a cute little bear:)) Chloe just started to like wearing pony tails and some of her favorite sayings is "oh, all right..." She is growing before my eyes! We had a busy weekend. The other day, Chloe attended her art class, which she does not like, then we joined some neighbors at our local moon-bounce place, and then off to McDonald's for lunch. The McDonalds had a huge playground and she was big enough to climb through the tunnels and over the bridge. I was so proud of her!!!

Happy St. Patty's Day!

Happy St. Patty's Day! We celebrated with cornbeef, cabbage, and potatoes. Chloe loved the cornbeef... Wyatt was not a big fan:)

Weekend News

Wyatt playing his flute and hanging out with Aunt Danielle!


This weekend Benji worked, so I went to my parent's house on Saturday and Sunday, my mom came over to help out so that I could get some things done. Thank you Mom!!! I really appreciate it! We also had a fun night with our good friends Joe and Maria and their kids. We had a nice dinner at our church's fish fry and then band practice (Joe, Maria, and Benji are in a band together, and I am just a groupie). It was a pretty late night as you can tell from the picture below:)

Wyatt News

Patty, his PT therapist trying to "trick" Wyatt into tummy time with the big blue ball. Wyatt is not a fan of tummy time. He is still not crawling, but scoots across the floor.



Chloe was around during Wyatt's PT session, so she tried to do the same thing that Wyatt was doing, but with a little pink ball.

Wyatt's nurse Susan... she is always so happy. It is ALWAYS sunny in our house when Susan is here. She instantly puts Wyatt in a good mood, plays with him non-stop, and gives me energy when I come home from work with her cheerfullness!

Yesterday I was on the phone with our insurance company for one and half hours. Wyatt's ECMO wound is still not totally healed. In fact, I think it is pretty nasty for a wound that occurred 17 months ago. So Dr. A, his surgeon prescribed Mepiform strips. Apparently these strips are very expensive... about $180 a box and Wyatt needs 12 boxes and they are hard to get. I called 10 pharmacies/medical equipment suppliers that are in our network and none of them carry it. I found one pharmacy about 45 minutes away that will send them to us but they are not in our insurance companies network. So I discovered through a "customer service representative" that I could get a precertification... so that is what I did and let's just hope Wyatt will be getting Mepiform strips!!! I am learning so much about insurance that I never knew before!!

The above pictures are from Wyatt's PT session today. His therapist, Patty does a wonderful job with him. Also in the picture is his awesome nurse Susan. Because of his excellent team of nurses and therapists, Wyatt is doing great! His favorite activity now is seeing how far he can throw the ball into the kitchen. He has a great arm and is showing signs of being a major league baseball player!!! That's if his mother will allow him to:)))

Where have I been???

Where have I been??? I have been busy painting out mud room!! We purchased our house in June before Chloe was born 2 1/2 years ago in August... ever since then I have been pregnant or in a hospital with the exception of now! So it's about time I start decorating our house now that I have a little more time on my hands. My next room is the bathroom, then the study before summer begins!!! I hope I stick to my schedule.

Chloe had her first art class today. I think coloring is one of her least favorite activities, so I thought enrolling her in a short Mommy and Me art class will be fun. Today was a little challenging... she didn't want to take off her coat and she wanted to sit on my lap the entire time. I hoping she will warm up by the next class. It's only four weeks and Benji will be taking her two of those times (I haven't told him the class is called "Mommy and Me" yet:)) I guess he'll find out:)) There is a little art gallery in the center where the class is held and I think she had more fun exploring that:) Chloe made a 3-D pot of gold with shamrocks for her first project. She got to practice cutting, coloring, and pasting. She even tasted "magic juice" and soda bread. Magic juice is orange juice that turns green when poured in the cup. That was her favorite part of the entire class. We'll see what next week is like:)

Pictures of Chloe exploring the art gallery....

Pulmonary Check up

Today was Wyatt's one year anniversary at home, and we celebrated by going back to Hopkins for a pulmonary check up!! Yipee!! It was a great visit. The part that I am most excited about is that we took Wyatt of his oxygen and hooked him up to a stat monitor. He was stating around 98 percent!!! This is awesome because we usually do this at home where he is very comfortable and happy, but today he was in a doctor's office and a little fussy... so this is great news! We have orders to wean him down to 1/8th and he may be off oxygen from 1-2 hours a day. His diuretics are stopped and we have a plan to wean down his xopenex from every 4 hours to every 6 hours, then every 8 hours, and then as needed. We also looked at his chest x-ray dated Feb. 25th (the most recent from the ER) and compared it to Sept. (I don't have sept. chest x-ray to show you), but his left side of his chest is MUCH more clear now. Before, it was so fuzzy full of fluid that you were unable to see a lung. Now you are able to see lung and it looks a little better. The report indicated that he has a hiatal hernia (which we knew from last Feb. reflux study) but Dr. Abdullah believes he may have reherniated near his esophagus. We have to return to pulmonary in three months and get another chest x-ray in one more month. So far, Wyatt is doing great!!!

Chest x-ray from Feb. 25th when he was sick in the ER. Do you see the wires on the left side holding his diaphragm together? That is Dr. Lau's fancy patch!! You are also able to see his shunt tubing on the right side. The fuzzy part on the left side is his heart and the black area is air which indicates lung.




September 2008 CT scan when he reherniated and had a bowel obstruction.


Super Cool Wyatt

Chloe's special day....

Chloe and her friends went bouncing and hula hooping the other day... here are some pics...






Today was Tacky Thursday at Gabby's house... so here are some pics of Chloe being tacky... She is starting not to like her picture taken, so I have to sneek them in.

Chloe took this picture of herself....