Unprepared and Full of Regret

On Friday December 18th, I needed to take my son to the doctor to get a sports physical. Whenever I have to take Simmi out to the store or anywhere else, that nagging fear of what is lurking on the floor or in some seat cushion is always plaguing me. I’ve learned to live with this fear for well over a year and at times I’ve been criticized or looked at weird when I explain that Simmi’s severe food allergies keeps us from attending some event, playgroup or even the thought of attending preschool in August 2010. Going out of the house is a major anxiety event for me each time I pick Simmi up to put her into the car. Questions always enter my mind “Who sat in this shopping cart before her? What was that kid eating? What was on his or her hands that they may have transferred onto the surface Simone touches?” If I go to a doctor’s appointment for her, on the way I’m wondering about the mother who lovingly brought along a snack for her toddler consisting of Honey Nut Cheerios, cheddar cheese Gold Fish, poptarts or anything else that is convenient and will keep a little one satisfied and happy. It seems so unnecessary to have those things swimming around in my mind, but I can’t help it. I worry about these things constantly, always being on guard for that stray peanut or other product that could harm or even kill Simone.

When we go out there is always a set of eyes on Simmi. Whether it is me, Dom or one of my kids, someone is always watching. We arrived at my son’s appointment and Simmi was running around being her cute self. My son Noah was faithfully keeping an eye on her as I filled out the paperwork for his visit. I was unprepared for the events that transpired shortly before Noah went in to the examining room. You see, I let my guard down. Whenever we enter a store or anywhere unfamiliar, I always scan the place with my eyes looking for that “thing” that could cause Simmi harm or death. I didn’t scan the doctor’s office. We walked into that office, I got the paperwork and just started writing. If it wasn’t for Noah’s loving attention to detail, our situation may be quite different. Neither Noah nor myself noticed that there was a vending machine located in the corner of the waiting room. It was the kind that dispenses candy when you put in a quarter, you turn the lever and grab the candy by the handful. This thing was filled with three different types of candy, one of which was Peanut M&M’s. Simone had wandered over to that machine which had a few M&M’s sitting in the tray just begging to be picked up and tasted! Who was she to argue with the small roundish brightly colored object? She’s never even seen a Peanut M&M before. Noah had turned around for just a second to look my way and when he turned back to watch Simmi, he noticed that she had something brightly colored in her hand AND she was just about to put it in her mouth. He ran across the room as fast as he could and his quick movements caused me to look up to see what was going on. I looked on in horror as he removed the peanut M&M from her hand and threw it in the garbage. At that point I quickly got up and started to walk across the waiting room…but this little toddler of mine was quick! Before I even got to her, she spotted another M&M on the floor and picked that one up too! I was in panic mode. Both times she picked up the candy with her left hand, so I grabbed her and held on to her left hand so she wouldn’t touch any part of her body or put her hand in her mouth. Now the receptionists were staring at us trying to make heads or tails of the events unfolding before their eyes. I rattled off to them all her food allergies and asked for the bathroom so I could wash her hands, but when I got into the bathroom, there was a pump container filled with liquid soap. Still holding her and now also trying to read the ingredients on the back of the soap container, one word stood out in the ingredients “Cocamidopropyl betaine” which comes from Coconut oil. Normally we wouldn’t be concerned with this product since she used to eat quite a bit of coconut oil, but after she had a violent reaction to coconut oil last weekend and because she is now highly allergic to tree nuts, I could not expose her to the soap! All of this was happening so fast that I wonder how I was even able to think properly. I quickly came out of the bathroom and asked Noah to get her wipes out of the diaper bag. I must have used five wipes just on her one hand. Was I over reacting? I had regret racing through my heart, and I was inwardly chastising myself for ever letting down my guard. I wiped off her hands…and mind you, this is all taking place in a matter of three minutes (it felt like an hour!) and all the sudden out comes the welts. She starts scratching her left hand and now she has a bright red rash traveling up her hand and arm. I alert the receptionist that I need Benadryl and I’m kicking myself in the pants now for NOT putting it in her diaper bag the one time we needed it most! Does the receptionist bring me benadryl? NOPE, she brings me cortisone because they don’t have any Benadryl available. I could have gotten mad at her, after all it is a doctor’s office…but I was super angry at myself for not taking the proper precautions in the first place. All I could do was hope that it was just a rash that she would get and stay armed with Epi-pen in hand. The rash traveled up her arm and before the end of ten minutes she was covered from head to toe in a raised red rash. All I could do was look at her like she was a bizarre science experiment. I felt helpless and so unbelievably guilty. We left the doctor’s office, I drove Noah to school and when we got home Simmi ran straight for her room saying “ba ba” “ba ba”. I tried to give her Benadryl but of course she is totally freaking out and screaming if I try to get it into her. It spills all over the place with only a very small amount actually swallowed. She fell asleep in less than five minutes and I sat in the dining room with the monitor turned up as high as it would go just so I could listen to her breathing. Simmi was so exhausted she slept from 11:30am to 4:30pm. I sat with the “shouda, coulda, woulda’s” running through my head.

After she awoke from her long nap, I went in to examine her body and the rash was still there, but so where a few other things that I haven’t seen since she had a severe reaction last year…purple little spots on her chest which happens when she has a severe allergic reaction. She’s OK now, but all that day and into the night Dom and I sat there staring at each other, reminded of just how serious her allergies are. We started going over action plans again, discussing the new things that can’t be brought into the house like Duralogs for the fireplace (they contain nut shells), or real pine wood because of her allergy to pine. It feels like our world is closing in around us as we must continue to do things that will safe guard her well being. Our home has now become completely food allergen free as well. We do not bring anything into the house that contains peanuts (that was always a rule), wheat, milk, soy, eggs or tree nuts. At her allergy appointment when we got the results back from her RAST, we realized that there is a good possibility that even cooking foods that contain the things she is allergic to, could be breathed in by her and caused her levels to increase to an alarmingly high level.

With her speech and vision problems complicating things more, we are hopeful that in time she will be able to communicate with us and let us know when she is starting to feel some sort of reaction coming. All I can do at this point is learn from that experience and always stay on guard and alert without making her feel like the world is a dangerous and unsafe place to live in.

Here are some photos I took of her after her first rash from our dog. Three days after those photos were taken, the outer skin on her nipples started to fall off:

Forgive My Absence

Please forgive such a long absence from my blog. Much has been going on in our lives and unfortunately my blog has had to take a backseat for a while. A few weeks ago my husband safely arrived here in New Mexico for good and I have been taking it all in! Its been great having him home. The past two weeks have been filled with much insecurity for Simmi and she is finally calming down. Anytime Dom would get up to do something she would freak out and start crying, thinking he was going to leave again. Its been a little nuts here. Of course he is loving every second of it. He’s plunged himself in to the Green Scene here, making connections and looking for work. Yes, he’s unemployed. It was a very difficult decision to have him move out here without a job. We’re keeping our fingers crossed for a few jobs that look very promising. We’ve had issues with Simmi’s health, issues with my health and now, in just a few days Noah and Shoshie will be leaving for the summer to be with their dad.

My hair continues to grow in and its starting to look pretty good. The photo is very deceiving though. Before I took that picture (and others) I applied a cosmetic concealer called DermMatch to my head. I have a good amount of hair that is permanently gone, but this concealer works like a charm making it look like I have a bountiful, full head of hair. I’m still learning how to use it properly, and as my hair continues to grow (and hopefully doesn’t fall out again) I’ll do an even better job at applying it. I highly recommend it for anyone that has thinning hair. I went a little crazy with the stuff though, and put so much on in certain areas that my head looked like I had just come out of coal mine. If I touched it, the dark pigment would rub off on my hands. Right now I need a lot of this stuff to make my hair look decent, and hopefully as it grows in, I’ll require less of it.

My transition back to raw foods will also be coming soon. We figured out a way for me to have tree nuts in the house. In another blog entry, I mentioned that it would be difficult for me to go back to raw foods because of Simmi’s food allergies, but we have found a way around that. On the side of my house, we have a sun room which we will be converting into a raw kitchen. I will be able to prepare raw meals without the possibility of cross contamination or potentially exposing her to tree nuts or seeds she may be allergic to. We don’t bring any type of nut product into the house, so a separate raw kitchen becomes the best way to ensure that we don’t have any problems.

I’m hoping to be back on track and NOT neglecting my blog very soon. I have a lot of catching up to do and so much to say that sometimes my mind just goes blank.

Bald Beauty of the Day