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.