Stressed

Yesterday we visited the GI doc that gave us more insight into what Camden may have. He urged us to get in to see the Geneticist as soon as possible. Sometimes I feel that I may know too much and start researching with lack of information to be worried about. He mentioned a "storage" disease. For example, he thinks that Camden is processing something such as glucose properly but when it is stored in the form of glycogen in the organs, he cannot turn it back into glucose causing the organs to become enlarged. Camden has no idea anything is amiss. He thought that the Dr was just tickeling his tummy. We repeated some bloodwork to see it has changed since he was in the hospital. I talked to the PA today and said he was going to call to see when the geneticist will be able to work us in. He thinks it will be a couple of months unfortunately. They did suggest getting a liver biopsy at Duke's metabolic center to see exactly what the enzyme missing is. On a lighter note, we were lucky to get into see the sleep doc about his sleepwalking and night terrors on Thursday. I am worried about his poor appetite. They suggested to supplement with pediasure but know he will not drink it. The thing that bothers me the most is the effect this will have on his life. I can't bear the thought of him struggling with other kids asking why he is so short or his belly is big. He is the sweetest little boy. Yes, he does does have his moments of drama and meaness, but who doesn't. I am hoping that this is all a fluke and can be treated really easily. Some treatments include diet restrictions, tube feedings to ensure blood sugar maintenance, and worst case organ transplant. We will wait anxiously and pray fervently for his healing.

Picky Eater

So all you who know Camden well know that he is an extremely picky eater. I can not say anything because I am too. His diet consist of ovaltine milk, juice, water, cereal, chicken, waffles, toaster strudels, pizza, an occasional apple, goldfish, peanut butter crackers, and a very few snacks. I have tried to sneak "good" things in by adding them to muffins and such but it's a no go. I was the same way(so my mom says). I remember my mom making me a completely different meal than theirs every night. I left out mac n cheese btw and "marshbrellos". Nick is not home very much at night so we end up eating not so good meals. We went out Sat. to Bonefish Grill and had the best dinner! Sangria, bang bang shrimp, filet with whipped pot., and Kilwin's ice cream. If I was rich I would for sure have a chef to cook something like that every night. Bliss is total opposite. Eats everything and a lot of it.

Back to Reality

Camden is feeling so much better. Reality is, he's back to his usual chocolate drinking, popcorn eating, stubborn, sweet, way too smart self. He ate 6 chicken nuggets, a cinnamon roll, popcorn, PB crackers, marshmellows, etc. so I'd say we're  good. We did make a venture to the Ped to get a shot of rocephin :( I must say that I am feeling much more protective of them now. I cancelled the Y membership bc I don't want them to get germs. Crazy I know. We will be doing swim lessons there though. I am finally getting caught up on homework for last/this week. We will be celebrating our 7th anniversay on the 16th. We were planning on taking a trip, just the two of us for the for time since Camden was born almost 4 years ago until all of this happened. At least we will be eating alone at Bonefish and spending some together without the kids.

Where to Start....

So the camping trip was cut short a day which I'm ok with because it was miserably hot. Camden started running a fever last Wed. night. Of course I did not pack a thermometer, so Nick had a brilliant idea to use the temp gage in the refridgerator. After 2 rounds of motrin the temp came down. The next day he was very irritable and did not want to do anything, especially outside. We decided to come home around 3. That night I ended up taking him to the Ped at 730. She confirmed pneumonia and prescribed a lovely tasting antibiotic. He was up again all night with a fever and threw up the antibiotic the next morning. After taking a long nap, he was very disoriented and combative. At that point I took him to the hospital. They took us right in. I was really impressed with the Ped ER at Presby. They were all wonderful and very good to Camden. After some motrin and IV fluids he perked up a little bit. Nick unfortunately was still working so it was hard being there by myself. After looking at the chest xray they decided to admit him because the area of pneumonia was so large. I was completely for this because I did not want to take him home and him crash that night. On the admission exam, the Ped noticed that his belly was distended and said she could feel his liver. She wanted an U/S done that night to rule anything out. I honestly did not think anything of it b/c he has always had a big belly. I did think it looked larger, but thought it was from crying and sucking in air from the respiratory issues. He finally went to sleep at 1130 and they came and got us for U/S at 0100. I slept from 4a-6a when the doc came in. She explained that the liver, spleen, and kidneys were all enlarged but weren't sure why. The next day the IV continued, we did several blood tests, and laid around. They decided to keep him another night. I forgot to mention the night terrors he had while we there. The nurses were terrified which was a little comical, but reassured them that he does that a lot. The next day the gastro doc came and explained that she believed that this was something more global such as a metabolic disorder instead of just a GI issue. From there they did more bloodwork and a skeletal survey to look at any anamolies of the bones. There were some labs that came back a little abnormal and some abnormalities of a few vertebra. We stayed a third night. I appreciate home soooo much more now. Staying in that room for 4 days eating hospital food, taking quick showers, measuring urine, trying to catch up on homework, holding Camden down for procedures, and sleeping on a hard cot is not fun at all. I cannot imagine having to "live" there like some of the other patients. Camden charmed the nurses and other staff of course. He was his silly self after a few days, and desperately wanted to go home. At discharge we still had several unanswered questions but had to accept that for now. All of the nurses were great and are greatly appreciated. We tried shower them with goodies too. The funniest thing about the whole experience is how he became obsessed with turkey sandwiches bc they gave him one in the ER. Every meal he wanted a turkey sandwich. As of right now we are still waiting on labs which will take a few weeks. We will then see the geneticist, gastro, and neuro docs. I did have a breakdown last night as I was fighting with him for hours to take his medicine. We both collapsed in exhaustion and slept great. He was so sweet when I was crying and said that he wanted me to cheer up and brought me a beanie bear that he got in the hospital. I have tried not to cry in front of him b/c it makes him so sad. Please keep us in your prayers as we find out what this means for his future. Bliss is doing great too. She is a dramatic dare devil with blond curls that bewitches everyone. Thank you to everyone that visited, brought gifts, and prayed for us.

melt my heart

Bliss Emmeline Nobles

Camden Paul Nobles

The Night before CAMPING

Tomorrow we will be heading to Dan Nichols Park for two glorious nights of camping. My kind of "camping" includes a fifth wheel camper, indoor bathroom, flat screen tv, couch, and surround sound :) It is soooo nice to put the kids to bed and enjoy being outside by a campfire. Nick thinks he is a masterchef while preparing his hotdogs over a stainless steel grill. Agenda: 9am head to the park, set up camp, engage in many children's activities such as carousel, train rides, gem mining, aquarium, petting zoo until they can no longer hold their wee eyes open anymore and........wait for it......SILENCE. Might even have a black n mild :)