A Special Christmas . . .

Christmas was so much fun this year!!! I was unable to see Levi last year on his first Christmas due to waking up that morning with a terrible cold. Needless to say, this year we treasured every moment with our kiddos. Teddy and Naomi are amazing and truly understand what Christmas is really about. They are so thankful for baby Jesus and realize that He is the reason for the season. We allowed them to help trim the tree (I didn't even rearrange the ornaments when they were finished =]). It was obvious which branch Naomi liked the best because all of her ornaments hung from that branch. Teddy made sure that all of his were evenly distributed and even got to help operate the train. We made it a tradition to read a different Christmas book each night by the light of the tree and then watch the train go around and wave at Santa each time he passed by. This year instead of a Gingerbread house, Auntie Rebecca brought over a train kit. The kids did great and didn't even try to consume it like last year (although they did get more than their fair share of icing). Every night Teddy would pray for snow on Christmas morning only to be devastated by Brooks Garner's news (WIS) that it would not be snowing here. Teddy has never been so interested in the news until now. Each evening he would sit on the edge of the sofa and say "Let's see if he's gonna change his mind" - he never did. Fortunately, we live by Edventure, an amazing children's museum that just happens to have a neat town called Snowville. The snow is made of bubbles and is dispensed by a fan up above. The kids had a blast playing ice hockey, checking out the penguin and polarbear exhibits, making an igloo, riding a snowmobile, and "sledding" down snow mountain. They even got to do some Christmas baking inside the little cottage with a fire place and a black and white TV that plays a video of SCs most famous "snowstorm" in the 70s. One day when Levi is big enough and strong enough to enjoy a truly snowy winter, we will travel to the White Mountains of Arizona to celebrate with my family. Right now, Levi is still getting synagis shots on a monthly basis. We had a scare a month ago when he broke out with a rash that he might possibly be allergic to it but fortunately he did well after the most recent shot.
We celebrated Christmas Eve at Granny Betty's and Grandad's in Newberry. We stayed at home on Christmas morning and had Grandma over in the afternoon. I finally caved and allowed Justin to get the kids a miniature 4 wheeler. Of course that meant brandnew professional helmets and goggles as well. For as long as I can remember, both Teddy and Naomi have been fascinated with skateboards and scooters. Even walking down the River Walk, Naomi will take one foot off of the platform on our big sit and stand stroller and say "I just want to skate" with the sweetest, most persuasive voice. We got them radio flyer scooters and they feel like such big kids actually getting to go out to the culd e sac with us to ride them. Levi got the cutest radio flyer rocking horse. Not only is it plush (can be removed for washing - a super bonus) but has a waist support to use while he is so small. He absolutely loved pulling apart the wrapping paper and riding on his horse like a sweet little cowboy. One of the gifts that I will cherish forever is a heart necklace from my babies. The next night we celebrated at Justin's mother's house in NE Columbia with Uncle Dan, Aunt Jen, "Baby Daniel" - who isn't at all a baby anymore and Grandad and Grandma Betty. The kids were overwhelmed with gifts and a month later are still playing with some of them for the very first time. Justin decided to go against his better judgement and his wife's endless nagging for him to get rid of the dirtbike he purchased this fall. We ended up in the ER on the 27th of December with a shoulder seperation after he took a bit of a fall on the beloved bike. Needless to say, he finally listened to me and sold the thing. He is doing much better now but it really brought him to a hault for a few weeks. He knows he is just blessed that nothing was broken.
We had a fun surprise last week when one of my aunts from AZ called us out of the blue to see if she could fly out to visit. Two days later, we were in Charlotte picking her up at the airport. We had the best time with her. This is the first Christmas we have had to endure without both of her parents/ my maternal grandparents. I am so thankful for the Christmas' we used to spend at their home in Globe, AZ. Some of my favorite memories are playing with the little iceskaters my grandmother put on a circular mirror under the tree (sometimes she put it on the piano). They would set up a beautiful nativity scene in a little cave at the edge of town and light it up for all to see. We would also go to the courthouse and ride around in a horsepulled carriage to help support the local foodbank (My mother started this tradition in our own town growing up - another amazing memory =] ). The train around my grandparent's tree made me insist on one under our own - Christmas just isn't the same without them here. I believe it was good for my aunt to get away since she and her son are our only living relatives left in Globe. My aunt wanted to see the children's museum and surprised us with another membership - truly a gift that keeps on giving. We took her to Charleston to see the sights and spent a big portion of our day at Folly Beach. There was hardly a soul on the beach and the weather was beautiful. A woman had two little bunny rabbits on leashes there - she said it was their first time on the beach. The kids thought they were the cutest thing and tried to convince me that we needed some rabbits of our own (Sorry . . . not gonna happen). They have enough fun torturing Jericho - our black and white kitty, our Calico - Patches (AKA Mamma Kitty), and Chester our Chocolate Lab.
Unfortunately, we all got a touch of a cold this past week. It hit Levi harder than the rest of us. With his Chronic Lung Disease (a result of prematurity/ a lot of oxygen/ and his PDA) a cold for him requires around the clock breathing treatments and usually a steroid like Orapred to help him out. This was just confirmation that we need to steer clear from church just a little longer - no need to rush things. (We had planned on resuming at the beginning of the year - Justin's mom would watch Levi while we took the older two to Sunday School - as much as we miss being in church, we realize that we can not take the risk of exposing the kids to additional germs). Levi was running a temp of 103.7 degrees the other night. He has done well taking all his medicine and actually enjoyed his luke warm bath that Justin and I gave him at 1:00 in the morning. Ofcourse, when I took him in to be seen he was 98.6 degrees and his lungs sounded perfectly clear. Tonight however, even the breathing treatments aren't helping so much and he has been coughing a good bit making it difficult for him to rest well. First thing in the morning, I am calling the Drs office again. It is so nice to have a pediatrician's office that takes his health as seriously as we do. I'm so thankful this one opened and we were able to switch practices when we did! I trust all of you are enjoying a fabulous New Year. God Bless and Good Health to all of you.

Naomi Lynn

For Naomi's 3rd Birthday this year, we decided to really treat her like the big girl that she is and do something extra special as opposed to our traditional BBQ parties. We took her, Teddy, Levi, and their cousin Daniel to Village at Sandhills to play at Teddy Mountain. Each of them got to pick out the stuffed animal of their choice, watch them fill it with stuffing, add a button that either sang a song or said something when you pressed on its stomach, and pick out an outfit. Naomi fell in love with a white unicorn and chose a wedding dress (??? - That's what she wanted). When you press its tummy, it says "I LOOOVVVEEE YOU!" Teddy couldn't decide which animal he liked the best. Ultimately, he was torn between a big brown moose or a pink flamingo. He went with the flamingo and outfitted it with an airborne military outfit including the parachute. It laughed hysterically when you pushed on it. Levi slept the majority of the time so we went with an adorable teddy bear in blue jeans that sang "Hush little baby" (Not that he is ever too noisy, we just liked the soothing, gentle voice that sang it =]) Daniel picked out a puppy that sings "How much is that doggy in the window". We all had a lot of fun. The best was when Teddy caught us all off guard and stepped on the button that releases all the stuffing. It went everywhere! The girl who had been operating it ran over to the machine and kept apologizing to her manager for forgetting to turn it off. He had a great sense of humor and told us all not to worry about cleaning the rest of it up that it would give them all something to do since they hadn't been that busy. We then met Uncle Dan at Red Robin to grab a bite to eat. (He was being to macho to go to Teddy Mountain with us =]). I had been researching places that were "friendly" to those on a Gluten Free diet and had a special menu for items that were prepared specially for those like myself. I had the best burger that was in a lettuce wrap rather than the bun. Naomi was so mature and completely knew that the entire ordeal was all about celebrating her. She was so adorable when the staff came and sang Happy Birthday to her and brought her a special treat. We were a little concerned that it would be startling for her if we let them in on the fact that it was her big day but after watching her dissapointment each time they would clap and sing Happy Birthday to another customer, we decided to go for it. All of the kids seemed to enjoy her attention. When we were buckling her into her seat afterwards, she said "Now we get to go to Grandma's and get my presents!" She was soooo sweet and excited. We let them stay up late and play at Grandma's with her huge pile of gifts. Our gift to her was a Fisher Price Star Station. It is the cutest thing to watch her and Teddy sing a long with their michrophones and see themselves on the TV. Her favorite cartridge is ofcourse Dora. Naomi loves anything to do with singing and dancing and is also fascinated with Little Einstein's characters Annie and June that sing and do ballet. It is so hard to believe that our perfect, little princess is no longer a baby. It truly seems like just yesterday that I was packing all of my hospital gear in the car during commercials of the USC game we were watching in hopes that my husband wouldn't realize what I was doing. I waited until the last second of the game when they announced that we had officially won to tell him to get his keister in the car that we were heading to the hospital. I had it started and everything. I grabbed up Teddy and we were gone. My water literally broke one minute after they got me a room and hooked me up to the monitors. She has had us wrapped around her little finger ever since.

Levi is One!

One year later . . .

Today is a very special day; it is Levi's 1st Birthday!!! I am reminded of a time when we were counting his age by days because each day was truly a miracle that he was still with us - now we can do it in years. God is so good! We are so thankful to everyone at Palmetto Health Richland. May each of you be blessed for your dedication, wisdom, patience, and love. A year later and I have still got his announcements sitting on my desk. My apologies. Please don't think we haven't appreciated all your support if your thank you card hasn't yet reached you either. We praise God everyday for the people who prayed for us and were there for us through it all. This entire experience has allowed us to focus on what really matters in this life. Praise God, Levi is doing amazing. Yesterday, he sat unsupported for the very first time by himself. Teddy and Naomi are great physical therapists and cheer him on as they demonstrate to him how to crawl to objects that they place before him. He loves people, books, music, rides in the wagon, swinging on the gondola swing with his siblings, pulling on the cat's whiskers, and hearing his own voice. He is so funny and intelligent (of course =] ). As we celebrate, please remember all of the babies in the NICU. Anytime you have an opportunity to support March of Dimes or your local Children's hospital we ask that you would. At this moment, hospitals around the world are filled with families that need your prayers and support.

Levi's Auntie Karen allowed us to have his 1st Birthday party at her beautiful home in Chapin. Despite the fact that Naomi became seriously under the weather upon our arrival, it was a very special time for us. I was determined that Levi would only be eating his Organic Gerber Green Beans while everyone else got to enjoy his cake because developmentally I did not believe it would be wise to allow him to eat it yet. Once he had that thing in front of him, there was no taking it away. I am thankful that I allowed him to fully experience a first birthday and he was very grateful also.

















Update for those keeping up with our EGDs: Yesterday, we visited Teddy and Naomi's gastroenterologist for their EGD results. At this time the biopsies and enzymes do not appear to be abnormal. He asked me to go back to keeping a journal of what they eat and how they respond to it. He felt that we would probably be in the clear as far as surgery on Teddy's pyloric stenosis as long as he did not appear to have any issues with indigestion or anything along those lines once he has completed his eight weeks of Prevacid. When we returned home, the mail had my EGD/biopsy results. (Teddy had was very ill over the past few days. I didn't want to leave him to attend my appointment so I had them mail the results to me). It appears that while my villi architecture appears to be normal (are at a normal length), their is definitely elevation of my IELs (intra-epithelial lymphocytes). My VTS (Villus tip score) was a 9. anything below a 2.2 is normal and anything 10 or higher is surely abnormal. "In many cases there will be associated epithelial cell injury leading in time to villus atrophy. Conditions associated with normal villus architecture would seem to represent a mild or early manifestation of Celiac Disease. " Archives of Pathology & Laboratory Medicine, Jul 2006 by Brown, Ian, Mino-Kenudson, Mari, Deshpande, Vikram, Lauwers, Gregory Y. It seems that this is likely Celiac Disease at a pre-infiltrative stage (Marsh type 0). I really believe that it was the Lord who prompted me to learn about Celiac three months ago (it seems as though it has taken us an eternity to get through all the tests and come to this conclusion). 95% of people with celiac disease don’t know they have it. Find out if you might be one of them… Please visit www.celiaccentral.org to find out if you too should be tested. Any blood relative of mine should at least request that their doctor do a Celiac Serology (blood work). I know it will certainly be an uphill road to go Gluten-Free but it is a road I believe to be in my best interest. My children and I obviously eat the same foods for the most part so for now they will be going partially gluten-free when they eat what I do. This is likely to help us determine if gluten containing foods are indeed affecting them as well.

Word of Caution:

Our oldest son, Teddy, recently became VERY ILL after eating a Grilled Chicken Go Wrap from a fast food restaurant in Lexington, SC. I had taken him to our pediatrician. Initially, they believed it to be a very bad bug. They did a CBC and stool culture just in case. Two days later, he contacted me to inform us that it was Campylobacter food poisoning. We discussed the last place he had eaten and the fact that it was the most likely culprit. Naomi also had a wrap but did not want any of it since she had eaten too much cake earlier (Thank Heavens). We had a total of three days of fever up to 103 degrees, constant diarrhea, and vomiting as well as 3 hours combined sleep. Teddy was constantly crying/moaning and said "I have a lot of boo boos in my belly". He would not eat/drink anything for us including gatorade which he loves. Fortunately, he is now much better and is on an antibiotic to help knock out any bacterial infection. Just wanted to remind everyone how important food safety is and to think twice before allowing others to handle your food.

Camping '08

Cannot believe it has almost been a year . . .

LEVI-We can not believe that it has almost been a year since we were blessed with our sweet baby. He has truly done amazing. We have had so many praise reports from Levi's most recent appointments. Yesterday, he received his first Synagis shot of RSV season (Synagis is the first monoclonal antibody successfully developed to help prevent an infectious disease. It is indicated for the prevention of serious lower respiratory tract disease caused by respiratory syncytial virus (RSV) in pediatric patients at high risk of RSV disease.) He is to have this shot once per month from now until March. At the appointment, he weighed in right at 18 pounds. The pulmonologist listened to him and said that he sounded great. Levi is still considered to have chronic lung disease as a result of being a 24 weeker. The only medicine Levi is currently taking is a flovent 44 inhaler. He takes 2 puffs 2X a day. He is also still taking .5 mm of Polyvisol vitamins each morning. In addition to the pulmonologist, Levi recently saw the ophthalmologist who said his eye sight was perfect (Thank you Lord!). In fact, he was a +2.5 which is even better than most babies at his adjusted age. The cardiologist said that his PDA ligation looked terrific. Levi still has an opening in an upper chamber in his heart. This is something that will most likely close on its own. If it does not, it is usually still not an issue as many adults still have this opening. The only thing that he said he would not recommend Levi to participate in as and adult would be deep sea diving due to the high amounts of pressure. Levi will soon be having his 12 month well visit and will have to get his immunizations. He has done very well with the rice cereal (it took a little while for his tummy to adjust to it) so we are looking forward to introducing him to more baby food. We will begin with the veggies and then the fruit and eventually work up to the meats. He is still nursing and on rare occasion will have a bottle of formula. Just two days ago, Levi's bottom teeth finally broke through. He loves holding his toothbrush and brushing with Teddy and Naomi. Developmentally, Levi scoots and rolls anywhere he wants to go. He is not quite sitting without support. It took him a little while to sit up in the Bumbo seat but now has no problem. He puts a great deal of weight on his legs when you hold him up to the coffee table. He figured out that he can really talk and keeps us going with all that he has to say =].

NAOMI-our little lady (I called her a lady the other day and she kept asking me if she was an "old lady" =] ) has really grown up. A few nights ago, she pulled a kitchen chair to the sink and asked if she could peel the shrimp that daddy caught with me. I kept insisting that it was too "pokey" and that she better let mommy do that part. After several bats of her eyes and a convincing smile, I finally caved and would peel most of it off and then let her take off a little piece and put it in the pile. She was so happy. She is so proud of herself when it comes to doing her "chores" each morning and moving her stickers on her sticker chart. Each day, they get a sticker for getting dressed, brushing teeth, putting away their bedroom toys, making their beds, and sweeping their bedrooms (after I do it first =] ). Naomi did such a great job during swimming lessons that her coach began doing exercises intended for Teddy's age group. Just this week we had to take her to the dentist because a tooth chipped while she was horse playing with Teddy on the inflatable jumpoline. The dentist said that it was actually a good thing that it chipped where it did since this particular tooth was an extra one that was geminated to one of her front teeth. Now all they have to do is go in and bond them together. (A great fix until she is ready for permanent teeth). He is hopeful that he will be able to do this with out sedating her. On the eighth of this month, both Naomi and Teddy had EGDs at Palmetto Health Children's Hospital to further investigate Celiac Disease. They wrapped them up like "burritos" and gave them an IV. They then moved them to another room where they sedated them through the IV and then took biopsies of their small intestines and a few other concerning areas. Both children did amazing. The only time Naomi cried was when a nurse tried to take out the IV before Naomi woke up and this woke her up. A sweet volunteer by the name of Betty quickly came to the rescue with ice cream. We are amazed at how much the staff and child life do to make these experiences positive ones for the kids. We will know more about their results on the 29th when we visit with their Gastroenterologist. I must say that I feel very convicted for the feelings we had after our negative experience with this Specialist several years ago. Our last experiences with him have been wonderful - We just have to remember that everyone has off days.

TEDDY-As a result of the EGD, we immediately learned that they had to do a dilation on Teddy during the procedure because he has pyloric stenosis. It is a narrowing of the pylorus, the opening from the stomach into the small intestine. This is something that more commonly happens in first born males (I find this interesting). Most of the time, it is discovered and surgically corrected when they are infants. The baby will usually vomit a great deal sometimes even- projectile. I actually did go to the pediatrician we were seeing when Teddy was an infant complaining of such issues. He was confident that I was simply overfeeding Teddy and had me adjust how much and how frequently he ate. This seemed to do the trick so we never thought much of it again. We will also find out whether or not they will need to do surgery on Teddy for this at the end of the month. They definitely discovered erosion of his small intestine and gave him a prescription for Prevacid. On a lighter note, we have really enjoyed the great outdoors. Justin and I have taken the kiddos camping and fishing a lot lately. All of them love it. Both Teddy and Naomi have caught their first fish. Teddy was very sad when he had to throw back a little one. He said "I very wanted to take it home and keep it in my bedroom with me". Perhaps when we can trust him a little more with a fish tank we will let him put one in his room. He is so independent when it comes to getting dressed. He insists that his underwear need to match his shirts and gets upset when they don't. Teddy has been doing a great job when it comes to adding and can now add 5 + 5. Teddy is now officially a big boy as he is big enough to sit in a booster seat rather than his car seat. He is on a soccer team and continues to keep us laughing as he is a comedian both on and off the field. Both Teddy and Naomi love playing with Levi and introducing him to new things.

My Gastroenterologist’s office informed me that my biopsy results returned saying "Celiac was suggested". I am hoping to get clarification when I return for my follow up on the 27th. We'll keep you posted.