Some things I have learned through this experience.

I thought I would share a few of the things I've been thinking of lately, things that I've learned only by going through this experience with Eddy. I can understand why they say that songwriters are most inspired when they are depressed or going through a difficult time, because I have been able to see things that I previously couldn't see, and a lot of it has only come by God allowing me to experience fear, and pain, and anxiety, and sadness with Eddy. And now that a small part of that fear and pain and anxiety and sadness is relieved (hopefully not just temporarily!), I'm better able to think through what God has allowed me to see as a result of this whole experience. 

First, and I know I've touched on this several times in my blog already, but God has shown me how easy it is to take things for granted. To take waking up healthy for granted. To take having a home for granted. To take having a wonderful husband for granted. To take having an amazing family and awesome friends for granted. To take sunny days and blue skies and relaxing times for granted. To take good meals for granted. It's so easy to complain about stupid things, when really we should be ignoring the stupid things and thanking God for what we have. I was definitely guilty of complaining way more than I should have before this happened, and I pray every day now that God will never let me get in that position again. I want to have an attitude of thankfulness indefinitely, and I don't want to complain about things that, in the scheme of things, don't really matter. At the time I thought I was completely justified in what I complained about (being exhausted and upset that Eddy wasn't sleeping, being frustrated with breast-feeding, being mad at Ed for not picking up his dirty socks off the floor, etc.) It's amazing how, when you're able to see a different level of fear and sadness, you're able to look back on all of the "little things" in a different, less upsetting way. One quick example of this: When Eddy was a newborn, I was having a really difficult time breastfeeding. He wasn't interested, he would scream every time I tried. And I really wanted to breastfeed exclusively, so this was (coupled with the horrid hormonal changes women experience post-delivery) the "end of the world" in my opinion. I was a mess. And my wise husband told me in the midst of my stress that, looking back, this would seem like it really wasn't a big deal in the scheme of things. That, who cares if I had to breastfeed and supplement with breast milk and formula, as long as Eddy was getting enough to eat? I told him, "No way, I will always be upset that I couldn't exclusively breastfeed", but looking back now, I'm like, "Really? I made such a big deal over that?" Having gone through all of the hospital visits, seizures, thinking Eddy had infantile spasms, developmental delays, not knowing if Eddy will be able to talk, not knowing where Eddy will be developmentally in a month, a year, five years...this has all helped me to see that "little things" like socks on the floor and exclusively breastfeeding, don't really matter in the grand scheme of things. I just want to always be thankful for what I have, and I don't want to take what I have for granted. 

Second, I have been blessed to see that there are so many kind, great people in this world. I don't want to imply that I thought the world was full of horrible people, but I guess I had gotten cynical in thinking that there were a lot of good people out there but not a lot of really GREAT people - giving, selfless, loving, caring people. Through this experience, I have been able to see how giving so many people are. People on Facebook that I haven't talked to in five or ten years came out of the woodwork and sent me heartfelt, loving messages about how they've been praying for Eddy and for our family, and how Eddy is on their church's prayer chain, and how their mother and grandmother are praying for Eddy, and how they really want to do something for us but don't know what to do, etc. When I think about how many people expressed care and concern and prayers for Eddy, it seriously brings tears to my eyes (ok, and there they go again. :) ). The world is full of wonderful people, and it's so good to know that. When you have a day where you only meet the negative, unhappy, rude, horn-honking, no manners, close-minded, people of the world, please take my word for it that there are many, many amazing, kind souls out there. And thank you to all of these kind souls who cared about our Eddy and spent time praying for him.

Third, if you are fortunate enough to have excess, either excess money, or time, or resources, or knowledge, it's so important that we help others.  Many of us have been blessed with good jobs, nice homes, free time. Being in the hospital, I have seen so much sadness - a mother that has lived at the Ronald McDonald house for months because her daughter has cancer, a mom at Cleveland Clinic who has been at the hospital with her son every day for nine months because he has a brain tumor. Even with the amount of fear and worry we had about Eddy's seizures while we were in the hospital, I realized how lucky we were to "just" have to go through what we were going through. A year ago, if I saw a page on Facebook about a little baby or a child who had cancer or brain atrophy or a genetic disorder, I would just ignore it. It was too hard to even consider, I didn't even want to even think about it. I wanted to go about my easy, neat life and not worry if I didn't have to. Now, I guess I can say I'm drawn to these pages. I want to pray for these people. I want to offer my support. I want to do what I can to help. God has shown me how fortunate I am, and He has also shown me that I have an obligation and opportunity to give back to others, in big and little ways. We are fortunate that Ed's business is doing so well. So now, when I get that letter from St. Judes, or the Ronald McDonald House, or Compassion International, or Worldvision, instead of giving every fourth or fifth letter, we give what we can every time. My thoughts now are that if I can buy a latte every time I go to Starbucks, I can give $20 or $30 or $50 to help these organizations that are doing so much good helping others. If you can't give money, there are so many other things out there you can give. The smallest of these is a smile to that person in Walmart that normally you would walk past without a glance. I have found myself smiling at more people, and praying for more people that I don't know, than I ever have before. And I am so thankful that God has shown me the importance of this, because a simple smile from us can mean a lot to the person we're smiling at. 

Lastly, and I guess this just ties in with everything else, God has shown me how important it is to stay positive, and to avoid negativity as much as possible. It's so easy to fall into the "negativity trap." Negativity is all around us, and we will always come across someone who is unhappy and feels the need to express this unhappiness. I was guilty of being negative the past couple of days, but yesterday evening I made a choice to try to remain positive, despite some less-than-positive news I got Wednesday afternoon. When Eddy was in the hospital a few weeks ago for low platelets, we weren't sure if the cause was ITP (common in kids his age, basically just means low platelets of unknown cause, often spurred on by a virus), or Eddy's seizure medication, phenobarbital. There is a lab in Wisconsin that specializes in checking blood for platelet antibodies to certain medications, so we sent Eddy's blood in to see if the low platelets could have been caused by the phenobarbital. Since his platelet levels have been normal lately, and he is still taking the phenobarbital, we all assumed that the low platelets were caused by ITP, not the phenobarb. It turns out that Eddy's hematologist, Dr. Brecher, got a phone call from the lab in Wisconsin on Wednesday afternoon, and he said this was odd because he's never got a call from the doctor there; normally they just send the results. The doctor told him that Eddy does in fact have a platelet antibody to phenobarbital, and since he had never seen this before, he tested Eddy's blood twice, and called Dr. Brecher personally when it came back positive. Leave it to Eddy to be the only kid this lab has ever found to have a platelet antibody to phenobarbital. The reason this is so disconcerting is because the phenobarbital has been the only medication that has helped to stop Eddy's seizures. Ironic, huh? So Eddy had his platelet levels checked yesterday, and they were 244, which is still in the normal range. As long as they remain normal, Eddy will be able to stay on the phenobarbital, and I'm praying this happens! It was so easy to get frustrated and upset about this news, and I definitely was for the better part of a day. But then I realized, God has gotten us this far, we still have Eddy, he's doing great, he hasn't had a seizure in 32 days (praise God!!), his platelets are fine. I'm going to focus on all of the positives going on here rather than the negative piece of news I just learned. There is a positive piece to every situation, no matter how negative it may seem. When Eddy was in the hospital constantly last month, and it seemed like this was never going to end, my relationship with God was improving, and that was the positive that I was able to focus on.

God's grace has given me the desire to become a better person as a result of all of this. I hope this post doesn't sound like I'm trying to be holier-than-thou because I'm definitely not; I'm no better or wiser than any of you. God has allowed me to see things that may seem obvious, but it's different when you believe them in your heart and not just your head. I'd like to think I have always been a kind person, but this whole situation has made me see how much kinder, and better, I can be with God's help. This started as me promising God that I would do anything if he could make Eddy better, and now, regardless of how things turn out with Eddy, I want to do what I can to make a positive influence on this world. We would still appreciate any prayers you can throw our way, though. :) Thanks to all of you reading this blog, and for all of your continued support.

Day 26!

Today marks 26 days since Eddy last had a seizure. To say that we are feeling relieved would be an enormous understatement. To say that we are feeling anxious would also be an understatement. Every day that goes by without a seizure is such a blessing, yet every day part of me is terrified that "Today's the day he's going to have another one." 

Ed and I keep asking each other, "What do you think it is that is helping Eddy?" Most likely, it's the phenobarbital, which he started, coincidentally, 26 days ago. I also think, though, that the increase in Vitamin B6 is at least in part helping him. We doubled his B6, from 70 mg a day to 140 mg a day, the same week he started taking the phenobarb. Pyridoxine Dependency is a very rare disorder where kids need massive amounts of pyridoxine, or vitamin B6, to help control their seizures. I don't think Eddy has Pyridoxine Dependency, but if there's a tiny chance that he does, it's worth it to continue giving him the B6. If you're interested, here's a link to another blog I've read about three little boys who have Pyridoxine Dependency: http://www.angelfire.com/amiga2/jenniz/

So Eddy is on 140 mg a day of B6 (and Dr. Gupta in Cleveland said we could increase it to 200 mg a day if we wanted to.) Just to give you a little perspective, normal toddlers need about 1 mg of B6 in a day. And Eddy is taking 140x that amount. The good thing about B6 is that it's a vitamin, and there aren't any crazy side effects (unless he takes it for a very long time; then we were told it can start causing nerve damage.)

Almost two weeks ago, we ended up back in the hospital with Eddy (exactly a week after we got home from Cleveland!). Ironically, it had nothing to do with Eddy's seizures. I brought him to the pediatrician for a fever (102 degrees) and lots of strange bruises all over his body (but he didn't fall...he woke up with them). Turns out, Eddy had influenza type B and extremely low platelets. (Normal platelet levels are between 150 and 400; Eddy's was 7.) He was immediately taken by ambulance, directly from the pediatrician's office, to Buffalo Children's, where he was started on an IV antibiotic and an immunoglobulin treatment to increase his platelets. His little body did not respond well to the treatment, and they had to stop it, but they started him on prednisolone (ironically, the same steroid he was going to be started on for infantile spasms.) Luckily he was only on the steroid for 5 days (I say luckily because it gave him horrible insomnia and irritability), and his platelets went from 7 to 15 to 35 to 108 (last Friday), to, yesterday's level of 389! (Now he's on the high-end of normal and I can feel much better about him falling and not having internal bleeding! He does still wear the helmet that they gave us at the hospital whenever he's crawling around, just to make mommy feel better. Pretty sure he's the cutest helmet-wearing kid ever!)

Last weekend, Ed and I were discussing and researching diet, development, and seizures. We read a lot of blogs, research articles, and general internet pages about how organic/gluten-free diets can help improve development in kids who have autism-like symptoms, and also can decrease the frequency of seizures. Although this is rare, we thought, "If we can change Eddy's diet and help his development improve and his seizures to stay away, then it is definitely worth a try." And if it doesn't stop the seizures, at least an organic, mostly gluten-free diet is going to be healthier for him. So, last Sunday, I did a three-hour, two-store grocery shopping trip (Ed's parents watched the baby during this massive shopping expedition - thank you!), and I came away with lots of organic, gluten-free, meals and snacks for Eddy. This week I have done way more preparation for Eddy's breakfasts, lunches, dinners, and snacks than I ever have before, but I can already see a positive change. He's much more alert, responsive, attentive, and his little personality is shining through more than ever before. It has definitely encouraged me to continue this time-consuming, (and expensive, holy cow) diet for Eddy. Here's what Eddy had to eat this week: organic bananas, lentils, acorn squash, carrots, peas, green beans, sweet potatoes, raspberries, gluten-free oatmeal with fruit, gluten-free dairy-free mac n cheese, gluten-free chicken tenders, buckwheat waffles, animal crackers, oat cereal, organic yogurt, and organic quinoa and brown rice. Much healthier than the Gerber toddler meals that I threw in the microwave for thirty seconds for lunch and dinner. (I always thought they were healthy because they have a meat and a vegetable, but after reading the long list of ingredients and seeing all the preservatives, I realized they weren't as healthy as I thought they were.) This has already, in the past week, opened up my eyes to the importance of healthy, wholesome foods. I've always "known" all of this intellectually, but only now is it making sense practically. It wasn't until we had a child and thought about how the food going into his body is fuel for his energy, brain development, and physical development that it actually started to make sense. I am optimistic about this organic gluten-free diet and I hope that it continues to make Eddy healthier.

Here is a picture of Eddy after feeding himself some lentils yesterday. :)

I know that I say this often, but I truly mean it. Thank you SO much for all of your good thoughts and special prayers for Eddy and for us. I feel like things have turned a corner, and I know that God has heard, and is continuing to hear, all of our prayers. For the first time in a long time, I feel hopeful, and not too terrified, about the future. The last month (ok, three months) was very difficult, but we are optimistic that things will continue to get better. Thank you, thank you, thank you for your prayers. <3