Thursday, May 17, 2012

My boy

My boy has red shoes. Red sparkly shoes. So? This story actually begins a long time ago, when we were shopping for shoes to go with John\'s tux for Uncle Danny\'s wedding. We went into a generic shoe store and had a look around, John, as usual, had his own ideas. While Jeff and I were looking around in the boys aisle John was searching the whole store. When it was time to go we noticed that John had chosen a pair of red, sparkly Mary Jane shoes. When I asked him about them he told me "they have now ties! Just like my tuxedo!" the simplicity of that statement melted my heart. Of course it made sense to him. There were indeed, little bows on each shoe. We didn\'t get the red shoes that day, but I told I\'m that we\'d get some someday. In New Zealand there was a pair of shiny pink Mary Janes in the dress up box at Playcentre that John borrowed on more than one occasion. Cool. Whatever. Fast forward to Christmastime here in Florida. John needed a new pair of shoes so he and I went out to look. At K-mart he found a pair of white, patent leather Mary janes that he, again, fell in love with. I told him that he could get them if he promised he would wear them every day. He got shy and silly at that point and couldn\'t make that promise, so we didn\'t leave with the white shoes that day. This week, however, I was at a local resale shop and I spotted a pair of the original red sparkly shoes. $.53 really? Sold. I happened to be on my way to pick John up from school, Lily home sleeping with Jeff. When I walked into school and saw his face I knew something was off. He ran up to me and started crying that his finger hurt. Turns out he had dislocated his little finger on the playground (doing so something he wasn\'t supposed to be doing, no doubt) I cuddled my boy on my lap and we put some ice on his little finger. I whispered in his ear about his red shoes and a huge grin spread across his face. Thrilled. So happy he couldn\'t contain himself. My boy wore those shoes all afternoon. Lily tried to put them on whenever she saw them empty. I really scored with this one! Next day. John wore the red shoes to school. I was a little nervous about it, but encouraged him to make that choice. I snuck his crocs into his backpack and told is teachers they were there just in case. When I picked him up he seemed just fine, he had the job of carrying the shoe bin to the door and then he gathered his red shoes into his arms and came with me towards the parking lot. "John. Those are NOT your shoes". My boy stopped in his tracks. I looked at him and gave him the chance to respond. Silence. "John. Those are girls shoes, go find yours." are you kidding me? This was coming from another parent at the school. I intervened at this point, as I was watching John\'s joy crumble right in front of my eyes. "actually, they are his shoes. He chose to wear them today. He likes them, and I like him" she stopped talking then. I got a few nasty looks from other parents but John and I walked to the car and went home. Why? Why did she have to go there? I later learned that a few kids made fun of my boy on the playground. He didn\'t seem to care too much about the other kids, but the confrontational comment from a grown up really stopped him in his tracks. My boy wears sparkly shoes. He thinks they are pretty. Jeff and I will support him. Whenever. Whatever.

Monday, May 7, 2012

Testing

Food allergies suck. Sorry. Just had to get that out. Let me rewind and start back in the beginning. When Lily was about three weeks old we noticed that she was gassy. Not just normal baby gas. It was kicking, screaming out in pain from a deep sleep, hard bloated tummy. I learned from one of the nurses how to do infant belly massage and on just about every time around her little tummy she would give a great big toot. When she was 4 weeks old I cut out milk and a few weeks later I cut out eggs. This was quite difficult in New Zealand, but worth the trouble for the relief Lily seemed to get. I continued to cut out milk, cheese and eggs but I wasn\'t strict on butter or dairy and eggs when they were cooked into things. Lily started solids at around 5.5 months and it was smooth sailing, so far. Around the same time we started solids Lily broke out with eczema. We didn\'t know it at the time, but this skin condition was directly linked to food allergies for her. In August we moved to Florida and things got worse. Lily had an eczema flare up that got infected, her poor ankles were oozing and inflamed. This coincided with her learning to crawl, again, related to allergies. We were frequent visitors to the pediatrician office, the eczema was difficult to tame and I was frustrated with the lack of answers. I asked the doctor for a referral to an allergist but was told that she was too young and received a referral to a dermatologist instead. We went to the dermatologist twice. He told me to keep giving Lily yogurt because of the great nutritional benefits. We tried yogurt, she vomited every time. He prescribed high doses of Benadryl to stop her itching, which I tried but I didn\'t like looking at my poor girl all drugged up, so I only used it when she was digging at her ankles and sometimes at bedtime. Fast forward to her first birthday. At her 12 month appointment her doctor finally conceded to an allergy blood test. Jeff and I took her straight from the pediatrician office to the lab where they could draw the blood. It was a heart wrenching experience. I held my poor girl on my lap, a nurse helped pin down her arms while another drew the blood. The couldn\'t find her vein in the first arm, so we had to get situated again. The whole time poor Lily was screaming at the top of her lungs and truly panicked. We got it done, and she recovered quickly, as kids do. Blood tet results came in a few days later, positive for dairy, egg, peanut, dog dander and cockroaches. I knew it! It all made sense all of a sudden (well, except for the roaches, that seems weird and something I do not want to test!) I visited an allergist a few days later and she answered a lot more questions and we did scratch testing for peanut, soy and sesame. (dairy and egg were high enough in the blood results that it seemed silly to give her an itchy spot for no reason) peanut came back borderline, but high enough to avoid. The pediatrician simply said to avoid those foods and seemed happy to move on, but I was not really okay with that, not knowing much about food allergies. I asked for a referral and got one to Nemours Children\'s Hospital in Jacksonville. When I called to make an appointment they had a cancellation and could fit us in the next day (appointments are usually really hard to get, with a standard 2 month wait for new patients, we got extremely lucky!) Dr. Walker was friendly and spent a lot of time with Lily and I explaining how food allergies work, the risks of cross contamination, likelihood of outgrowing etc. I am so thankful for her knowledge and her willingness to spend the time answering my questions. We left with a prescription for an Epi-Pen and an action plan for clearing up Lily\'s skin. Last week John wanted steak for dinner, so I made steak. I made really yummy steak. It was perfectly cooked, to my liking, medium rare. Lily loved it. She really loved it. She grabbed fistfuls of it (I shared my perect steak). After dinner I gave her a bath like usual and within a few minutes there were little red blotches around her mouth. Her eczema flared up on her joints, and a rash spread over her little tummy, so bad that even John noticed it! I put her medicated ointment all over the eczema and kept her up a little past bedtime to make sure she didn\'t have any other reactions. Lily slept soundly that night and the rash and eczema were clear the next morning. I called the allergist that morning and the nurse I spoke to seemed unconvinced that it could possibly have been a reaction to beef, she must have asked 5 times if I was completely sure Lily had had no access to any of her known allergens. She told me that she would consult with the doctor and get back to me. It wasn\'t until the next morning that I heard back and it was decided that Lily would be seen as soon as possible, and to avoid all beef until then. The day of the adverse reaction I began a food journal, writing down every bite Lily took, if it was made from scratch I included the ingredients and if it was processed I included the brand name. We had an appointment Wednesday and the Dr Walker, our wonderful Allergist from Nemours Children\'s Hospital was a wealth of information. She looked through the food journal and we decided to test Lily for both beef and olive, since I had cooked the steak and the potatoes that night in olive oil (I don\'t actually use olive oil often, I prefer grapeseed oil). Lily was a champ through the 15 minute scratch test, and I watched the spot on her back grow once again... Positive for beef. Bummer. All seems to be going well now. We are dairy free, egg free, peanut free, and beef free. I also try to avoid soy because it seems to irritate her skin. I am so happy to report that Lily has gained nearly 3 pounds since we diagnosed these allergies and got really strict with diet. Her skin (minus the little beef hiccup) has never looked better. Lily comes up with new words daily and is truly a joy to be around. With strict and total avoidance of all allergens her chances of outgrowing them goes up. So, for now. I will continue to nurse for as long as Lily wants to. She and I are basically vegans (who eat chicken and pork!) and we are getting there. Some days I hate it, but then I remember how amazingly lucky Jeff and I are to have 2 beautiful, healthy, smart children. It could be so much worse, and today I am choosing Joy.