Infantile Spasms Awareness Week (ISAW)- Dec. 3-9, 2012
Posted 03 Dec 2012
This blog is not about the first time my child smiled at me. Not about the night he rolled off the couch, and we took him to the ER (all they did was laugh at us). Not about the first time he walked to me. Not about the first time he peed on my husband (hilarious by the way). Talked. Laughed. Cried. Fell. This blog is not about the first year of parenthood. Good night! Who has that much time! No, Im Lauren Faulk. Im an education specialist at AETN. And this blog post is about my life and my trip to the world of Infantile Spasms/Infantile Seizures.
Nov. 1, 2011- Today my son Evan Gray was born. 7 lbs 7 ounces. My God is a mighty God!
Nov. 2, 2011 When you bring your child home from the hospital you think, Oh Lord, pleases let us make it through the night. When you finally do, you feel that maybe, just maybe, you will make it through the next year without doing too much damage to your little bundle of joy.
May 5, 2012, 6:10 a.m. Driving to Florida for a get away from work, baby, bills, dogs, diapers, laundry, grocery shopping, and everything that you get away from when you go on vacation. My husband and I need a little time to reconnect and have a little sand between our toes. Now dont get me wrong. I love my son, but we have been planning this trip for a while. And, well, lets be honest: bringing a six-month-old to the beach really doesnt sound like much of a vacation. Plus, my amazing mother and father said that they would be more than happy to keep him. Especially since we are sharing a condo with three other couples. I think a small baby would damper the fun little bit.
May 6, 2012, 12:35 p.m. We made it the Florida late last night. Our condo is right on the beach. Literally, you can walk out the sliding door, and you are on your own private beach. AMAZING. The weather is beautiful! Me + bathing suit = not so beautiful. The weight loss program before swimsuit weather didnt really work out, and neither did I. Or, maybe it was someone at the office always bringing cookies and cakes. Im a sucker for sweets, and, well, its showing. Every little cookie and snack cake. But, I digress. Im going to spend the whole day in this chair and soak up the sun.
May 7, 2012, 10:13 a.m. Yesterday was amazing! Spent all day on the beach. My husband has a nice golden tan and looks amazing. Did I mention that he is tall, buff and Italian? Gorgeous (Yes, after all these years together I still have a crush on my hubby)! Ah, Ill stop daydreaming! Anyway, so he can go out in the sun and in a couple of hours have a wonderful tan. NO BURN! Me, on the other hand, I am a little plump redhead. I have stock in anything that pertains to SPF. But, I fell asleep and forgot to reapply. Lets just say that Im a lobster. But, we are going shopping today. Did I mention that shopping is my only source of exercise, and hey my credit card needs a little workout, too?
May 7, 2012, 4:37 p.m. On our way home to Arkansas. In the car going 90 mph down the road with emergency flashers on. I dont know what to even write … everything has fallen apart. I feel like Im going to be sick again. Mom called a little while ago and said that they were taking Evan to Childrens Hospital. I feel like I cant even breathe or speak.
May 11, 2012, 11:09 a.m. Due to me being out of my mind for several days. My wonderful husband Brian wrote an email to his manager, explaining why he would be out of the office for a couple more days.
Brian Faulk <Brian.Faulk@work.com> wrote:
This email comes with a heavy heart. Friday night last week Laurens parents came down to Conway to pick up our baby, Evan. They were going to keep him while Lauren and I went to Destin, FL, as planned. Well, on Monday we received a call from Laurens mom saying they had noticed him sort of having these weird spasms a few times that morning and looked up some information on the Internet. Laurens mom told us to check a video on YouTube about this condition called infantile spasms, and to our horror it was just as we had seen Evan doing for about a month now. Lauren and I just thought he was getting his balance or his neck muscles were just not strong enough, per say, to hold his head up all the time. If not for Laurens parents, who knows how long he would have been having these spasms because we had no clue what we were dealing with.
Lauren and I rushed home that day and arrived at Childrens Hospital at 5 a.m. Tuesday morning. After a night of EEG monitoring by the doctors they came and told us Evan has infantile spasms, and we needed to have a MRI and some test done to see if there is an under lying condition that could be affecting him. I am happy to say the MRI was completely clean, and the doctors have no clue why he is having these seizures, which is a good thing. Most the time when kids have these problems they have underlying conditions that will cause more damage down the road. With his condition identified, we picked a medicine (a hormone therapy) and have started treatments. So far he is still having spasms (seizures), but he has only had close to 48 hours of the medicine in him, and we hope in the next few days it will take effect, and they will cease to happen. If not, there are other options we can try.
With all this said, Lauren is planning on taking off to be with Evan the next 8/10 weeks. While on the hormone therapy his immune system will be severally weakened and will need to be kept home this whole time away from anybody that could cause him to catch a sickness. He is scheduled to be discharged sometime within the next couple of days. Monday sometime during the day, I am reaching out to you because I might need to work from the hospital or come in and leave when they are ready to discharge Evan from the hospital. I have no PTO left since I used it all this week so wondering what my options would be in this situation. Lauren will be home with Evan so I am not needing lots of time just maybe Monday.
Lauren and I are hoping for the best and since his MRI was clean he has the best chance of getting over these spasms (with the help of the medicine) and leading a normal life.
May 12, 2012, 6:45 p.m.
We are going home! We have been on the hormone therapy for a couple of days now, and Evan is still having seizures. We remain hopeful that it will stop soon and that things will be back to normal, or as normal as it can be.
Dad left the hospital earlier today to go to my house and disinfect. The silly obsessive thoughts that run around in my head hope he will overlook the dirty clothes on the floor, the bed not made, and the handful of dishes in the sink. Its amazing how the older you get and become an adult you still have that thought that OH NO! Dad is going to look at my room. Its a mess! And, even though Im going through all of this, I still worry. As a Southern lady, we have those crazy, obsessive thoughts. My mother raised me right.
Dad is worried, as well. He is worried that Evan will catch something. He told me that he wants to clean my house from top to bottom. He even went so far as to talk to some of the people that clean hospital rooms and ask them where they get their cleaning supplies. I guess that is were I get it from. The days in the hospital, I would clean the hospital room for hours on end. Continually moving flower arrangements around, picking up after visitors, pacing around the room, redecorating the room over and over again. Trying to have control over anything.
May 13, 2012, 5:50 p.m. No seizure for 12 hours! We are watching him like a hawk.
May 14, 2012, 6:23 a.m. No seizures! I think its working! We have been giving him hormone shots in both legs every morning, and every time I have cried. Thinking, The shots are not working, and all that Im doing is hurting my poor baby. But, this morning I didnt cry. I was actually happy to give him shots.
July 3, 2012, 7:35 a.m. Today is Evans last day for shots. Evan is doing great. Crawling around on the floor. Getting into everything. Learning and playing. Doing everything a typical baby should do. It makes me think … typical. That is a word that I used often as a special education teacher. Funny … I used that word like a period at the end of a sentence; a word that could just be thrown around. But, no child is typical; every child is exceptional and a child of God. So, how can they be just typical? This experience has given me time to think and reflect about how cold and burned out I had become as a special education teacher. How I would read a childs developmental reports with no expression and very little compassion for the parents. If I had a time machine, I would go back and slap myself. Maybe this was Gods way of doing it for me.
Nov. 1, 2012 Today, we celebrate my sons birthday! To say that I went a little bit overboard on his party is an understatement. But, hey, he is my only child. Why not?!? Of course he will never remember it, but at least one day when he is grown, he will look at the pictures and say, Wow, Mom! You did an amazing job buying that cake. Also, I love the way you got all my party ideas from the hours you spent on Pinterest. Well, maybe not the Pinterest part, but I do think that one day he will look back at the pictures and think that it was a pretty cool party. High five to this cool mom!