Chemical Free

I gave away just about every cleaning product in my house yesterday. It feels great.

After watching the documentary Chemerical on Netflix, Bill and I decided to eliminate just about every chemical possible in our house. Sounds drastic- maybe. Here is something else that's drastic- protecting our youngest child from multiple deadly food allergies on a daily basis, and administering numerous medications while going in and out of doctor offices and hospitals. I wonder all the time what is in our food and environment that contributes, if not straight out causes, her medical problems. If this small step helps keep Lydia and the rest of our family safer from known carcinogens -as in scientifically proven CANCER-causing chemicals- then it's most definitely worth it. Not to mention the benefit toward cleaner water and air.

Plus the financial savings!! The homemade cleaners I used yesterday cost a fraction of store-bought products. Best part- I know exactly what is in them. Companies are weirdly secretive of what they actually put into their products. For example, over the past several years I've used an "allergen free" laundry detergent. This weekend I followed a rabbit trail to find out the ingredient list, with no success. Their website proudly boasts that it is hypoallergenic, safe, recommended by doctors...but no disclosure of what is actually in it. Nearly every cleaner in a typical household keeps the same secrets. (I don't like secrets.)

I cleaned my bathrooms and floors yesterday, and dusted the furniture. I only used various combinations of water, vinegar, baking soda, lemon juice, and washing soap. I didn't have a single headache that I usually do while cleaning, and my house is squeaky clean without the worry of toxic fumes.

If anyone had told me a few years ago I'd be on this path of organic/natural living (and a warning: I'm getting in deeper by the day) I would have rolled my eyes, muttering something about tree huggers under my breath. I'm changing. I think American society as a whole is way too trusting of the companies that serve us. It should scare us senseless that manufacturers put carcinogens in our household cleaners. They don't even have the decency to label their products, because they're hiding behind "trade secret" laws. Our government protects big business over citizens. Shocking (eye roll). Would it scare anyone to know that several of the chemicals in our cleaners are ILLEGAL overseas? As my sister said, Europeans demand that they not be poisoned, while Americans squeal, "Yay, pink bubbles!"

Here are some sites I turned to for the dangers of chemicals, plus cleaning recipes and advice:
Huffington Post Green
Cleaners Hall of Shame
Back to Basics Cleaning
Wellness Mama

And if you want to try your luck at finding an ingredient list (granted, I didn't go the extra mile and actually call the company- I was too ticked off by that point) here's the website given on our detergent bottle:
Sun Products Corp

 Smiling for a picture after improving during her recent hospital stay for bronchiolitis.

Big brother's turn to get breathing treatments for RSV.

Yep- definitely worth it!

Good News Update

You know what feels really good? Leaving a doctor's appointment with a smile on your face. You know, instead of biting your tongue trying to fight back the tears so your three year old doesn't get scared and ask why mommy's crying. Lydia had appointments with two of her specialists last week, and both couldn't have gone better. Well, except for the part where the doctor looks baffled and explains, "It's a miracle! She's been healed!" Maybe one day. But on this day, her allergist decided to lower one of her asthma medications, and the neurologist was amazed at how quickly Lydia had responded to her seizure medication. She noticed what many others have said to me- it's like Lydia has awakened from a haze. She is more present and engaged in what's going on around her. She talks a lot more, and her vocabulary has probably tripled in the past month. Her preschool teachers say that she walks around and plays with toys instead of sitting and observing the other children the entire time. It's not to say she was a zombie- she is a very bright girl with loads of personality. It's just that she has multiplied those traits many times over since the seizures have been greatly decreased. The neurologist said that her EEG was so jam-packed of seizure activity, that her brain was constantly short circuiting (using very layman terms here). Now, she can actually focus uninterrupted, and it has made such a huge difference. To look at her, you would have very little idea how much she has overcome, and still deals with on a daily basis. I am just so very thankful for her, and for how many ways God has blessed her. I cry every time I really sit and think about it.

One thing the neurologist mentioned- and I was pretty much shocked by it- is that Lydia qualifies for Make A Wish. I, as I'm sure most people do, usually think of children with terminal illness qualifying for this charity. Such a possibility had never even crossed my mind. My initial response was a mixture of Wow, that's depressing- and Wow, that's awesome! I mean, if any good can come out of all she's been through, then bring it on! Then, my feet quickly hit the ground, and I realized two things: first, that at this stage in her life it would be our wish, not hers, and second- she is doing so well medically speaking at this point, and (other than the occasional tantrum because she doesn't understand her food allergy restrictions,) has really no idea that she has medical issues. She isn't going through chemo, or enduring weekly hospital visits. So we aren't going to pursue that avenue any time soon- but it is kind of cool to know it's there. It's a charity that you pray you never have to use, but is such a blessing to those who need it.

So to sum it all up, Lydia takes a lot of medication every day and wears a pretty darn cute medical alert bracelet, but other than that is a normal two year old- tantrums and all. Which- I'm working on. I had it in my head that her medication was affecting her mood and causing this wretched behavior, but the neurologist gently let me know that no, she's a strong willed two year old with a mommy who feels sorry for her. Yep, she hit it dead on. I think that's a blog post all on it's own.

He Has a Plan

"Mommy, Lydia is so silly!" I was at the kitchen sink and didn't even turn toward the table when I asked Brooke what she was talking about. She said, "Look at her! She's just staring at Isaac!" I immediately turned my attention away from the dishes, but by the time I got to the table, the seizure was over.

I've been resisting writing a post about this, because I don't want my daughter to be labeled. It's also just hard to talk about. To not write about it though, is to ignore God's hand, and I feel it's wrong to not tell about all He's done. Countless people have prayed for her, and I think it's good to testify about how those prayers affected her life. I also feel somewhat alone in this, and am encouraged to talk to parents who have been through this with their own children.

Two months ago, I dropped my two youngest children off at preschool as normal. (It's only for two hours two days a week, and gives me a nice mommy break in the week.) Afterward, I came home to do some housework. I was unloading the dishwasher and catching up on the DVR when my cellphone rang. "You need to come now. Lydia stopped breathing." I know she said more, but I can't remember any of it. I just immediately started sobbing, and firing off questions- what happened, was she going to be ok, what do I do now? Five medics were already there, and she seemed stable, but I needed to come right now. I made myself calm down for a minute before jumping in the car. I was shaking uncontrollably, not to mention the hysterical sobbing. Was she going to die?? I truly did not know the answer to that question. I prayed for her life, while calling my mom and Amy to have them start praying. Bill was out of cellphone range at work, and was unreachable.

When I pulled up to the school, my heart started pounding even faster. There were two ambulances at the front entrance- both of them there for my baby. She was already in the ambulance doing well, so they had just waited for me to arrive before driving to the hospital. When I saw her, she was awake and cuddled up in a paramedic's arms. She looked at me, but it was as if I were a stranger. She had no reaction whatsoever. It struck me as odd, but I was so relieved to see her alive and well that it didn't really register with me. The medics seemed calm, which in turn made me calm. They said that by the time they arrived she was starting to come back to consciousness, but she was still very lethargic. It seemed to be classic for someone who has just had a seizure. I was a  bit stunned when the medics mentioned this. She had never had a seizure before that I knew of, and she had no fever that morning. Not much else seemed to fit though. There was no sign of anaphylaxis with her severe food allergies. She has severe asthma, but that didn't fit either. Blood sugar and blood pressure were both normal.

Before the ambulance drove off, my friends who also happen to be Lydia's teachers already had arrangements made for my son, and I was reassured that he had no idea what had happened with his baby sister. He's in a different classroom from her, and did not witness anything. I can say with confidence that the entire staff in the preschool program did everything exactly right in taking care of my children and the other children at the school.

One of the numerous miracles of that day was the fact that the entire episode was recorded on the nanny cam. It showed Lydia sitting in a teacher's lap, rubbing her eyes. The teacher had to put her down for a moment. If she had been in the teacher's lap the entire, it could have just been assumed Lydia fell asleep. I'd say the timing of putting Lydia down was a miracle. A few moments later, Lydia was standing in place, then started to sway a bit before falling like a plank to the floor. Her right hand shook a bit for a few seconds. One of her teachers saw the fall and immediately ran to her. This was another miracle- her teacher was not in her normal "routine" with the children, and was faced in just the right direction to see her fall, and be able to realize it was far from normal. As soon as she picked her up, she noticed it was like holding a rag doll- Lydia didn't support her head or neck on her own. She then seemed to come around after a few seconds, but her teacher noticed her lips were blue. She immediately tried to assess if she was breathing, and at this point the other teacher was dialing 911. Lydia's eyes were rolling around, and she wouldn't focus on anyone. She then vomited a couple times. The medics were there in just over a minute later, and by that point she was able to focus on the person talking to her. She immediately clung to a paramedic who would end up holding her until we arrived at the hospital. She would cry if anyone tried to take her from him.

On the ride to the hospital, Lydia was awake, but very much out of it. It was as if she had no awareness of her surroundings. My memory was taken back to the first ambulance ride she took at just under a year old after eating her first taste of a peanut butter cookie. She had been happy and was having a blast during that ambulance ride, even though her lips were twice normal size. I wished she could give at least a tiny smile this time around.

When we arrived and stepped inside the hospital, my calm heart rate immediately jumped right back up. The 911 call came over as an infant cardiac arrest, so there were so many ER nurses and physicians on hand I couldn't even count. The realization that I could have lost my baby flooded over me once more. Within a few minutes the room slowly dwindled to just a few nurses as they realized it was not actually a cardiac arrest case. Lydia at this point took note of the commotion and then recognized me. She reached for me, crying. A couple minutes later, she fell into a deep sleep. This is the same child who stayed awake all night long during the twelve hour drive to the beach. That alone should have alarmed me, but I was enjoying cuddling my sweet girl to think beyond the moment.

I was able to check facebook in the ER, and my profile was flooded with prayers for Lydia. I was overwhelmed by the love poured out on her behalf. People all over the state and beyond stopped what they were doing, and were on their knees praying for our little girl. The youth pastor from our church also came to be by our side until my husband was able to be there. I still had been unable to reach him on his cell, so he had no idea what was going on. I felt terrible that the first message he would listen to was me sobbing hysterically, and incoherent. At random, about five hours after it all began, the pastor felt a nudge to try calling him just one more time. The very second - literally- that Bill entered into cell service, and his phone lit up from all the missed phone calls and messages, his phone rang. It was the pastor telling him about Lydia. I'm so thankful he heard about it all from a calm voice who could tell him all was ok, instead of hearing all the hysteria from the hours before. Another miracle in a sea of many.

After a few hours in the ER, the usual labs, EKG, and CT scan revealed all normal results. Good news, bad news. It gave us no clear answer as to what happened. The final diagnosis given by the ER physician was altered consciousness, possible seizure. She was referred to a neurologist upon discharge.

Taking her home that evening was such a blessing. But I was also terrified to leave her side. What if she had a heart arrythmia in which she could suddenly drop unconscious again, this time not waking up? If it was a seizure, what if it happened again when I wasn't by her side? When it was time to put her to bed that night, I stood over her crib sobbing. How could I walk away from her? I contemplated sleeping on the floor of her room. I prayed about what I should do. I can't explain what happened, because I didn't physically see anything, but I suddenly felt an unnatural calm, and knew without a doubt that her room was filled with angels. I could feel their presence all around me.  I knew that the prayers of all those who prayed for her, people I had never even met, had been heard and answered. I layed my hands on her and prayed once more, and then quietly left the room. I soundly slept all night. Bill checked on her frequently, and she was sound asleep and breathing each time he did.

A week later Lydia had her EEG. She had been completely normal since the day everything happened, but I was still very nervous about the unknown. I still feared something was wrong with her heart, and that she could suddenly have a life threatening arrythmia. There are heart conditions that fit the scenario of what happened, and can also cause seizures. I also started looking at the blank stares she gave all the time a little differently. I had assumed she was a day dreamer like her sister, but now I started to wonder if those very brief stares were actually seizures. My mind was playing games with me. I had faith that the Lord was taking care of her, but I am human, and just wanted my baby to be ok. I wanted answers.

The EEG went perfectly- she was awake when they needed her awake, and fell asleep when she needed to be asleep. The tech couldn't give any answers to me, so it would be awhile before I'd hear the results. Her appointment with the neurologist was about a month away. It typically takes two months to get an appointment with a pediatric neurologist in this area, so one month was actually pretty quick. In the next few weeks, Lydia was her normal self. Well, with the exception of a three day, two night hospital stay for respiratory distress secondary to her asthma. Another scary experience, watching her tiny body struggle for every single breath she took. Her O2 saturation was in the high 80s upon admission. After recovering from that event, she then came home and caught fifth disease, and  then hand foot and mouth disease a few days later. My poor little girl just couldn't catch a break.

In the midst of this, and no more major episodes, I had convinced myself that all was ok. Whatever happened at preschool was a freak event, but nothing was chronically wrong with her. Bill asked if I wanted him to take off work to be with me at her appointment, but I told him not to do that. I truly expected to hear that the EEG was normal. I was wrong.

Her EEG was full of seizure activity. She has generalized type seizures, meaning her entire brain is affected. She has no aura, and her frequent blank stares are not daydreaming moments. The seizure at preschool likely started off this way, but then progressed to the tonic clonic seizure caught on video. She needs to be on daily seizure medication, none of which are without side effects. My daughter has epilepsy. She has a good chance of outgrowing the condition by adulthood, but she has a long road ahead. Most children with epilepsy have learning disabilities and attention deficit problems. The majority of children are diagnosed in elementary school; Lydia is barely two years old, so we don't know why she has seizures at such a young age. They are unrelated to her severe food allergies and asthma- two other conditions usually developed in children several years older than her.

I took two days to be in self pity for myself and our family, but mostly for her. This is so unfair for her. She's been through so much already in her short life. If I ever forget about this, I only have to look in my purse at the epi pen I carry everywhere, or wait until mealtime when I have to watch like a hawk what she can safely eat. It's funny- a peanut allergy used to be one of my worst nightmares for my children. Now I would love to have the "luxury" to be concerned with only that one. I don't mean to make light of children with peanuts as their only allergy- it's terrifying to know your child is allergic to something potentially airborne that can easily kill them. But if I lived in fear of that allergy alone, I would be crippled when combining that with all the other food allergies, on top of the asthma and seizures. In a way, God gave me a gift of sorts. Instead of giving my child one thing for me to focus on and fear, we were faced with something so big beyond what I could handle, I had the choice to either fall apart, or give it over to Him. I'm so glad to say I chose the latter. It's not my strength, it's His. I hate the fact Lydia is dealt this hand in life; but He has emphasized over and over to me that He has a plan for her. I pray for her healing, but I also pray to never be an obstacle to the work He is doing in and through her.

At the time it happened, I cried out to God as to why He allowed her to have that seizure. Now I think I know why- I think that He allowed it to happen in order to open our eyes to the fact she was having seizures multiple times a day right under our noses, and we had no idea it was happening. Her blank stares are so brief, that by the time you notice, it's already over. Occasionally they last longer, like the one at the breakfast table a few days ago. I still have fears for her. I'm afraid for her cognitive development, and that she will be teased because of her seizures. Perfect love casts out fear, but I'm still His work in progress, and rely on Him daily to carry my burdens. I don't live in perpetual daily fear, and for that I am so very thankful. I've given it over to Him, because I know how weak I am. I remind myself that parents hear news beyond what I could comprehend every day, and that even with all she's been through, Lydia is a very fortunate little girl. Even with all her medical problems, she still is living a relatively normal life with the help of modern medicine.

There are so many more miracles that God completed in the past several weeks. We are still praying for His mercy as we slowly titrate Lydia's seizure medication. It is the best medicine for her to be on, but it does come with some heavy duty risks, one of them deadly. But it's more of a risk to not place her on medication, so I feel we've made the best choice.

Thank you so much to all of you who prayed for our little girl. I in turn have been humbled through all the prayers given on her behalf, and am more dedicated to pray for others on a more consistent basis. Her story is far from over, and I know His plan for her must be a pretty spectacular one. I'm just glad I'm part of the journey.