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.

I think we're onto something =] . . .

God has truly answered my prayers and given me insight into what has not only been causing my children’s health problems but my own as well! 29 years into my life, I now believe that I am allergic to gluten. Gluten is a protein found in wheat, barley, some oats, and rye.

Now that I am aware of this allergy (also called Celiac Disease), it is as though a giant light bulb has been turned on. In retrospect, it all makes perfect sense.

I am going through a gamete of emotions and questions as I take it all in. Why did my childhood pediatrician and all the other doctors I've had to visit as a result of all my symptoms/health concerns not realize this??? Why was this not the first test that they had given Naomi when we learned that she was not growing like she should??? (Poor baby had to go through countless blood tests, sweat tests, upper and lower GIs) Why did our last pediatrician not take me seriously when I told him that Teddy's speech and behavior changed after consuming certain things???

While I know that I cannot change the past, I am excited to know that our future holds tremendous health. I never thought I would be soooo excited to discover that my kids and I have a genetic disease!

The discovery:
I have really emphasized a lot of my prayers recently on my Naomi and her inability to gain weight. She is almost three years old and still only weighs 24 lbs. Since the time she was six months old, she would vomit at the drop of a hat. After we ruled out deadly cystic fibrosis as well as reflux, we took a Dr's suggestion that she just has an exaggerated gag causing her to vomit rather easily.

Honestly, my husband and I just got fed up with all the horrific tests and inferences that we just were not offering her enough calories. If anything, we were offering her too many calories to the point where eating became a power struggle. While she can be a finicky eater, the child eats like a horse when you give her something she loves - ask anyone who has ever eaten at Moe's with her :) I knew that I, myself, had been like that as a child. It made sense to me that if I vomited a lot as an infant and was short and skinny for the majority of my life that it would only be natural for my daughter to be the same way.

Finally, I suggested that we start introducing the Pediasure that I had seen advertised into her diet. Our pediatrician referred us to a Gastroenterologist who thought it was a good idea. Justin, Teddy, Naomi, and I got there 45 minutes early to make sure that we would not miss this important appointment with her specialist. We figured that this way we could also fill out all the necessary paper work and insurance information so that when he called us back we would be ready. The receptionist assured me that the Dr. had faxed over all the information that they needed and that we could take a seat next to the other forty people in the office. After our 45 minutes were up, I approached the front desk to see how much longer our wait would be, the receptionist assured me that it would probably only be another 30 minutes. In the meantime, she said I could go ahead and get started on the paper work. "WHAT??? Paper work? I just asked you if there was any paperwork that I could fill out?" She just smiled a weird smile and handed me a clipboard with a sheet of paper on it. I calmed down after I saw it was only one sheet. "After you are done with that I will give you the next one." "You mean there are others?" "Actually, there are eight" she said "but we only distribute them one at a time" she said shortly. Fuming by now, I returned to my seat and filled out my paper, then returned to the desk for another. After eight times of doing this, I looked at my husband and children who were a little low on patience and said "well, at least that occupied us during our next thirty minutes, they should be calling us back at anytime." A woman next to us snickered and said, "Trust me we've been coming to this office for four years for our daughter and we always expect a two hour wait." My husband turned red. "What the heck is the point of scheduling appointments then?" Another twenty minutes went by and then we heard the welcome words "Naomi Bledsoe" Relieved at the thought of actually getting to feed our children lunch at a somewhat decent hour, we ran back where they weighed her and a nurse asked us a series of questions. She then put us in a room. The doctor waved at us and said he'd be in just a moment. He was talking to another man and laughing. By this time the kids were at their melting point. No matter how many songs we sang, books we read, or toys/snacks we pulled from their bags, they were fussing. Another twenty-five minutes went by as we waited for the doctor to join us. We could still hear him in the hallway talking to the gentleman about a fishing trip. When he finally had the nerve to come into the room, he held out his hand for my husband to shake his. My husband was beyond livid and just stared down at the floor without returning the gesture. (I have never seen Justin act like that to anyone before). The specialist did a very brief physical on her. After asking a few questions, he agreed that he thought she was fine and just needed Pediasure to help catch up on all the calories she lost as a result of all the vomiting. He said that he'd like to see us back in a few weeks. Needless to say we decided against rescheduling.

It has been two years since we began her Pediasure regimen. She is still skinny as a noodle. Teddy still has behavior and speech changes as well as random episodes of diarrhea (We just thought the kids were catching bugs easily and treating them with pedialite/gatorade as our last pediatrician advised). I have been very big on eating whole wheat breads, pancakes, waffles. I have tried many different brands of syrups trying to see what ingredients might be affecting him. It never once occurred to me that it was the pancake and not the syrups that were affecting him.
The other day, while we were playing at a park, I met a mother who said her son had Celiac's Disease. I listened to her talk about her son and his symptoms (they were very different symptoms from ours). She spoke about the fact that he can't have gluten which is in most everything. I remember feeling sorry for her and thankful that we did not have to deal with something like that.

This past Thursday, we were trying some new crackers. On the side of the box, it said that they supported the Celiac Foundation. After I laid the kids down for nap, I felt myself being prompted to look up the website on the box thinking about the little boy we had met. As I read the website, my jaw dropped. Everything that they discussed was what we were experiencing. I continued to search the web for other sources of information. There are 300 some symptoms associated with Celiac's Disease which makes it so hard to diagnose. When someone has a gluten allergy it causes their villi in their small intestine to break down. This villi is what absorbs important nutrients into your body. Among other issues, we have not been absorbing these nutrients therefore we were being malnourished.

I began to dismiss all the symptoms that I was experiencing as being associated with something else.

Growing up, I too was small like Naomi. One of the key factors is that we both had tummies that poked out. My sister and I have often laughed that I looked like an Ethiopian as a child since my tummy did this. My mother said she just assumed that since my father and his family had this "trait" that it was just the "Gardom" in us. I was always very short (4'10") until after I graduated middle school. (5'5"-now). I was late to develop etc . . . In college, I was foolish and really began to drink a lot of alcohol (barley, barley, barley). I had a lot of health issues at this point in time. When my husband and I were in the domestic peace corps (A*NCCC), I experienced a lot of cramping & migraines. Drs thought it might have to do with endometriosis but never did an endoscopy. I then got on Depo Provera and had issues with an enlarged prolactin gland. After the Lord prompted us to get off of birth control and begin trying for a family. We got pregnant with Teddy (Endometriosis is usually resolved after having a baby - so I never gave it much thought again). After Teddy, I lost a tremendous amount of weight and just assumed it was because I was nursing, eating "healthy", and staying active. After Naomi I lost a great deal of weight also. My hair began to fall out easily (normal for new moms right??? so I had heard) My right arm frequently began to tingle (probably a result from Naomi always being on my sciatic nerve during pregnancy ???) Then I had a tooth break (have always had a problem with my teeth enamel - due to all the lemons I loved as a kid right?) I had the miscarriage after Naomi and really blamed myself for "doing too much" - I had been changing out the kids winter clothes to summer clothes and was moving around heavy bags of clothing [even after my husband told me to let him know when I was ready and he would do it - I got up real early one morning while he was sleeping to get some more work out of the way and ended up deciding that I was capable of moving them around myself] – not long after, at a prenatal visit, we discovered that I had lost the baby. A month later, I was expecting again only to have my body go into preterm labor 16 weeks early. Praise God, Levi is perfect and will be having his 1st birthday this October! Shortly after Levi's birth, I began to experience joint and bone pain. Again, I just associated it with having four pregnancies in a four year period. For some reason, I have been unable to loose my "pooch" on my belly and have often thought that some days it looks much bigger than others. I have been pumping/nursing since Levi was born - surely my uterus has gone back to its normal size by now . . . Again, I tell myself that it must just be from all the comfort foods I ate to survive 15 weeks of having my baby in Intensive Care. (I have experienced many other not so fun symptoms that I don't even care to discuss with my husband let alone with the rest of the world =])
Thursday afternoon, Levi woke up with a runny nose - 1st time since the PICU in Feb. Teddy was complaining of left ear pain. I called the Pediatrician right away and got an appt. He said that Levi looks and sounds great (gave him a prescription for a baby dose of Afrin). Teddy's ear has a little fluid from congestion but is not infected - just gave him some D allergy. Dr. said his wife has Celiac Disease so he is well aware of it (God put us in great hands =] ). So we are going to be following up with them and doing the necessary tests - he said these unfortunately are not always accurate. In the meantime, we have emptied our pantries and done some online research to discover that there are a ton of great foods available for people who must remain gluten free (That is the beauty of it all - no medicines - no surgeries - just good wholesome food). We need to eat better anyway (who doesn't?)

So that is where we are at. We'll keep you updated as we learn more. Until then you can expect to hear a lot of praise reports as all of our health improves.

Levi update . . .

Summer Fun . . .

We have already had a full summer and are so thankful that we still have another month left of it to enjoy. Then again, SC summers seem to last a little longer anyway :) Papa and Nana were able to fly out for the first time since Levi was discharged from the hospital. He currently weighs 16 pounds and 2 ounces and is such a SWEETHEART!!! He is so smart (as a matter of fact, he is trying to help me push the keys as I type =] ) A week ago he was seen for his well visit and was told that he is up to date on all of his immunizations until his 1st birthday in October - Levi was so thankful to leave the office painfree. He has a follow up with the pulmonologist scheduled for the 11th. We will find out when they will begin to give him the monthly synogis shots that will help to prevent another case of RSV. RSV season will "resume" in September and last through April. While we know that we are to walk by Faith rather than fear, we must be wise and continue to do our best to keep the kids away from other children (in an indoor setting during this season). We did allow the children to attend a VBS this summer and were even brave enough to allow Levi to stay in hotels during our fabulous beach trip with Papa & Nana as well as an overnight trip to Charlotte to watch my cousins,12 yr. old triplets, compete in track and field at a National event (They too got to experience the NICU and are obviously doing amazing.) Levi had so much fun getting to visit the zoo for the very 1st time. He was not as sure about the crashing waves that he recently experienced. He loves to hear his own voice and deep belly laugh. Teddy and Naomi are thrilled that he has taken not only such an interest in them but in his books and toys as well. He has started rolling onto his stomach to sleep at night - for several nights we battled with him to no avail . . . finally, we called his Dr. for suggestions - he assured us that once they can roll themselves over they are no longer considered at risk for SIDS. Levi is quickly outgrowing his infant carrier that we once wondered if he would be big enough to ride in and is just barely fitting into his nine month outfits. He still has NO desire to wear shoes or sandals. It is so wonderful to watch the kids interact. If Levi gets the least bit fussy, Teddy and Naomi run to comfort him.

Naomi is just fine!

Just before we were getting ready to head back to the ER for additional X rays, Naomi surprised us with her paper clip. Thank you Lord!

Please pray for our princess!

Yesterday, since the boys were still napping, Naomi and I got to have what was supposed to be some special one on one time. I saw her pick up something shiny and pop it in her mouth. When I calmly asked her to show it to me, she said "I swallowed it". (This is a constant battle with our sweetheart. Despite the fact that she is 2 1/2 she still puts everything into her mouth - unless of course you ask her to.)

Justin stayed with the boys while I took her to the Children's ER. I told them that I thought it was a paperclip. After a series of Xrays, they confirmed that it was indeed a paperclip and that it was in her stomach. (This was a praise report that it had made it to her stomach and not been aspirated into her lungs or caught going down.) So now we wait . . . we give her foods high in fiber . . . and pray that it comes out all by itself. (Yup, you guessed it . . . we get to do a treasure hunt. I am reminded of Willie Wanka and his golden wrappers. I am certain that I will be far happier than Charlie ever was when I find it). If after three days, we do not, she will go in for additional X rays.



Thanks in advance for all your prayers!

Love,
The Bledsoes

Levi rolled over!!!

Levi rolled over from his back to his front for the very first time today! He is so excited that he was able to accomplish this that he has really been a little "roly-poly". One of his nicknames is Chubalub because he is getting rather round. His chuckles could easily be mistaken for those of Jolly Old St. Nick's. His very first laugh was a result of Teddy saying "Pirate Boat" in a rather country accent. Levi just lost it. Teddy realized that he was the cause of this contagious laughter and began to say "Pirate Boat" close to 300 times. Needless to say the laughter continued and Levi ended up getting a large case of the hiccups. Both Teddy and Naomi can make Levi chuckle at the drop of a hat. We have really been getting out and about with him lately. Just recently, we went to pick strawberries, visit all the local parks, stroll along the Riverwalk, and even went on a golf cart ride with Levi. We still do not take Levi inside public facilities other than for his appointments. A few weeks ago he had an appointment for his 6 month well visit and immunizations. Levi measured in at 13 pounds and 6 ounces. He did not seem to appreciate his shot one bit. Despite his painful reminder of needles, we were very excited to find a new practice that is familiar with babies like Levi . . . a practice that has reassured us that they will take any and all of his health concerns quite seriously. Right now, he is only on the apnea monitor at night and will most likely be taken off of it completely in a month. Currently he is taking only milk and will begin to take cereals when he is gestationally 6 months old (the end of August) unless of course my supply is unable to keep up or he seems to need additional food.

Teddy had to get five shots the following week for his 4 yr. old well visit. He came straight home to Daddy who stayed home to play with Levi and Naomi and said "I got one, two, three, four, five shots . . . and I don't like shots". He absolutely loves animals and has been toting their new kitten Jericho everywhere (in our yard of course). We have three others that we are still trying to find homes for if anyone is interested =] - They actually just turned 6 weeks old today. We had to explain to Teddy that we are only keeping one of them. He quickly suggested that we hide the kittens from others since the kittens need to see him. His humor never ceases to amaze us. Even when he is not trying to be funny he keeps us going. Teddy and Naomi are very interested in "what letter objects begin with" The other morning while they were brushing their teeth, Naomi asked me what letter sink started with. Teddy then tugged on the shower curtain and asked about it and then ran to the toilet paper roll and inquired about it. Later that week, we were working on our alphabet puzzles and Teddy held up the letter "T" for Naomi and said "T is for Teddy and T is for Toiletpaper" so now rather than all of the other "T" words such as Train, Tiger, Toys etc . . . that I have taught him, he continues to associate "T" with toiletpaper.

Naomi gets very excited about picking out her outfits each morning. It is amazing how innate her feminine side is despite the fact that her siblings, cousin, and many of her playmates are boys. She loves to play dress up and play with dolls just as much as she enjoys playing tractors in the dirt. Even though she is so petite, Naomi is easily one of the strongest people I know. If she happens to take a fall while running she doesn't hesitate to get right back up and go again. Sometimes she speaks as quiet as a mouse and others she is as loud as a lion - depending on her mood. Tonight after dinner we were enjoying some of the strawberries that we had picked and Justin was sprinkling a little bit of sugar on his. Naomi asked for some sugar so we got her some strawberries with sugar on them. She got very upset and began bawling that she just wanted sugar and not the strawberries. Confused Teddy looked to Justin to see why she had gotten so upset and Justin laughed "Welcome to the wonderful world of women".