I've arrived!

  You know what really bugs me? When I am out in public alone with my children, one or all 3, and  people say "Bless your heart!", "You have you're hands full!", "You poor Mommy!" or they stare and give me the hairy eyeball. Really people? I may have mentioned this before, but I feel compelled to mention it again. When people make these kind of comments it or shoot looks my way, it infuriates me! My children are not something that "happened" to me. They are a gift. A blessing. They have bad days just as we do. They get tired and hungry and cranky. But they don't have filters because they are kids. They speak whatever is on their mind regardless of location or company. This is their time to speak freely and act as they are feeling. You were once a child too! Too bad a lot of us seem to have forgotten that.

  I have a child with Autism. When we're out in public he may not like the color of your shirt or the shape of your nose, and he'll let you know. He may point at you incessantly or yell as we pass you by in our buggy at the store. He may scream and fight himself as I stroll down they aisle totally oblivious to what's going on around me. But do not ever feel sorry for me or make comments about what must be too much for you to handle. My hands are full. Full of love and more joy than you could possibly imagine. I have children! It's amazing! Regardless of what you see in that moment, there are countless moments that you don't. Moments where my child is still and quiet laying in my arms. Moments where my child rolls on the floor laughing at a silly face I made or even the shape of my nose. Moments when he laughs and smiles in his sleep. The more recent moments when he walks up to me and tells me he loves me for no reason other than that is what he is feeling in that moment. The next time someone says "Poor Mommy!" I will say "Poor you! To not know the joy I have in my life." Do not comment on things which you do not know or understand.

  I am familiar with equality for women and the battle between stay at home Moms and working Mothers. I've been on both ends of this discussion. I had an amazing career with excitement. I made many long trips and traveled to exotic places and they always lead to another long trip and another amazing place. It didn't end. It never would have. When I lost my job, I finally arrived to the place I'd been headed my whole life. Being a Mom. I didn't realize it until recently. Who would be taking Finnan to all of his appointments if I were still working? I had been taking him to all of them while I was still working and either felt guilty for not being in the office, in that meeting or on that trip; or felt guilty for not being home while I was in the office playing catch up from missing the hours or days spent at doctors offices. This was God's plan for me. He would not give me more than I could handle.

 I'm often told not to define myself as just a Mom. Not to introduce myself as "Finnan's Mommy" but rather by my name. But what's wrong with being Finnan's Mommy? It is an honor and a blessing to call myself as such.  This is my life. This is where I've been headed.  I AM FINNAN'S MOMMY. I AM TALLULAH'S MOMMY. I AM MEABH'S MOMMY. How lucky am I?!!!!

An Overnight Adventure!

I spent yesterday preparing for our overnight stay at Children's. Finnan's Neurologist suspects he may be having Absence Seizures. These are seizures where you don't convulse, you just check out for a few seconds. These have been suspected before, but when we had our last visit the Dr. noticed and set us up for an overnight stay. Because Finnan has the reverse reaction to sedation, we always have to put him under General Anesthesia for any procedure or test. We were told to be here at 7 a.m. so that he could receive the anesthesia, be hooked up to the 34 leads and put in a room to begin the 23 hour EEG.
  When he awoke from the anesthesia he was like a bear, so we stayed in recovery for a little while. He couldn't speak or control his movements. When he finally stopped moving, we were taken up to our "suite". He was still extremely agitated and repeatedly screamed "STOP! I WANT TO GO HOME!! I DON'T BELONG HERE! LET ME GO! I DON'T BELONG HERE!".
  It took a good hour and a half once we got in our room for him to calm down and stop screaming. Naturally he wouldn't drink what they had on hand as it wasn't in a bottle. So a nurse offered to go down to the cafeteria and get a bottle of "Yellow Gatorade". Once Finnan started drinking the Gatorade, he was worlds better.
  I packed an ice chest of food for him since I knew the hospital choices for his diet would be... lets just say bland.
  Finnan wanted Pizza. Knowing his feeding patterns, I had packed everything to make his GFCF Pizza. Its about 9:30 at night now, and all he's eaten today is Pizza. He had one for lunch and another for dinner. He's moved on to Blue Gatorade, but wants nothing but Pizza.
  So in this room, there are cameras and microphones to record Finnan's every moment. We have little buttons/buzzers to press if or when Finnan has a seizure and it will be recorded via EEG as well as by the camera. So far we haven't had to press our buzzers.
  Finnan's Grandparents bought him a Nintendo DS for this adventure and Thank God they did because we wouldn't have made it through this day without it. Its held his attention when we needed it to and is always present as backup.
  On that same note, I can't even tell you how lucky we are to have family close. They have helped us out so much with all of Finnan's appointments- either coming with for support or by caring for our other two children. It really is amazing to have them here. My sister is... I can't even find the words for her. She's just been a blessing to have so close. She always offers to help out and never makes me feel guilty or like I'm asking too much for her to watch my children. She and her husband come and take my kids to their house to hang out for the weekend or go visit her family, just on a whim. They are a such a gift.
  My Dad is coming in the morning to help with Finnan's tentative discharge. Finnan loves his "Bear" and will listen to anything he says or tells him to do. Again, we are so blessed to have them near.
  Well, Finnan has summoned me to help with his Harry Potter game and I am obliged to help. Hope to be posting again soon with positive news.

Thanks to all our friends who've sent texts tonight letting us know you're thinking of us. Love you all!

A Borrowed Poem

Welcome To Holland

by
Emily Perl Kingsley



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Clarification, A Brush With Ignorance, and Poo Poo's

  Sorry its been a while! We've had a lot going on around here the past week. I appreciate all of your emails regarding the blog.
 
  I would like to start of by clarifying that there is nothing "wrong" with my child. He is perfect in every way; it is his way and this is his journey. To anyone who may have felt left out or upset that they were not told about Finnan's daily life, I would like to say, in the nicest most caring way, this is not about you. Again, there is nothing "wrong" with Finnan. There is/was no reason to make a grand announcement or a big deal.

  I recently read a great book titled "Look Me In The Eye, my life with Aspergers" by John Elder Robison. In his Prologue he says "Asperger's is not a disease. It is a way of being. There is no cure. There is no need for one."  He also goes on to say that as there is no need for a cure for Asperger's, there is a "need for knowledge and adaptation on the part of Aspergian kids and their familes."

  Last night we went to Finnan's favorite new spot. I must admit, we all enjoy Mellow Mushroom. Finnan is on a Gluten Free Casein Free diet which  I mentioned in a previous post was introduced to me by "Super Mom". Finnan is always armed with his backpack of Dinosaurs and when he sees new people, old or young, he likes to show them off. While waiting for a table, Finnan sees a little boy around the same age and assumes he too must love Dinosaurs. Finnan proceeds to put his new T-Rex against the little boy's nose and say "See, this is my T-Rex. He growed up in water. He growed up really big in water. Now he's smallest again. See. See. See." The little boy turned his head into his fathers side terrified. We had to explain to Finnan that not everyone loves Dinosaurs as much as he does. Finnan kept going back over to the little boy, putting the Dinosaur in his face. We kept calling him back. This went on for a good half hour while we waited for a table. At one point, I heard/saw the parents talking about Finnan. Making comments about our parenting skills and his lack of social skills. At this point, there have been many others, I felt like getting up and walking over and telling them "My son has Asperger's. Your social skills are also lacking. But you don't have an excuse. EDUCATE YOURSELVES!!" As I said I felt like saying this to them. My husband was with me and tends to keep me calm in situations like this by advising me to ignore their ignorance. He's right, it is just simply ignorance.

  Our outings have gotten so much more manageable since we started the GFCF diet. I can't even explain how pleasant it is to go out with the entire family and there be no screaming, throwing, tantrums, hitting, head banging, etc. I've been asked or interrogated about the diet since Finnan's been on it, and all I can say is we both see a difference in his behavior. That is the only thing in his life that has changed and that we are in control of. So, I have to think that it is the diet.

  At the Autism Support Groups I attend, the Mom's are always talking about therapies and treatments I am not yet familiar with. They've blazed a trail I am only so lucky to be following now. One approach often discussed is the biomedical approach. Most have had an appointment with a DAN Doctor (Defeat Autism Now) and they can be quite pricey, especially if you don't have insurance to cover some of the diagnostic costs. I learned about something called "Nutra Eval" done by Genova Diagnostics. It is amazing what they test for and what they find in some of these tests. They test for intestinal permeability, heavy metal toxicity, polypeptides,amino acids, organic acids, digestive function, genetic predisposition and nutrition to name a few. The test costs around $770.00 if you are uninsured, as Finnan is. Some insurance companies will cover all or part of the cost of these tests. We've started with the least expensive test first and that is by going straight to the source- Poo Poo. Ha! Yep, a lot of children with ASD's have too much yeast in their system which could be linked to changes in their mood or behavior.  We collected a specimen last week and took it to FedEx that day. I had discussed with Finnan what was going to happen; we needed to "collect" his first movement of the day and then send it off to a lab to be tested. He was very inquisitive about the specimen and asked a lot of questions. We collected the specimen, followed the directions, put it in the FedEx bag and got in the car. On the way to FedEx, he asked again what was going to happen to it, where was it going exactly, who was going to pick it up, etc. When we walked in to FedEx there was a line. Finnan started yelling "Mommy, give the lady my Poo Poo's now! We're gonna be too late! The Poo Poo's gonna be bad Mommy, bad, bad! We must get the Poo Poo's there in time!" These were all little things I had told him in the days leading up to and the day of the collection. He decided to repeat them very loudly in FedEx. Of course, I was standing in line with a bright Orange biohazard bag that said "SPECIMEN". Yep, in line at FedEx with Poo. And everyone knew I was holding a bag of Poo. We left that FedEx location and proceeded to find another, less crowded location. We walked in, handed the lady our bag, she thanked us, and Finnan said "That's my Poo Poo's. They have to get to the lab fast. Quick send them now." As if he were her boss and he was giving her orders. He wasn't rude about it, just matter of fact. She looked at me, I smiled and rushed my kids out the door. As we were walking out Finnan said "I sure hope my Poo Poo's come back!".

  The Poo Poo's have not come back. However, I do know they arrived safely thanks to FedEx tracking.We are awaiting the results and will share when possible.

I meet Super Mom!!!

  The day after our Feedback appointment, I began calling the 4 known ABA therapists in our area. Only one answered and told me she was full but may have an opening in December. December?? We needed to get this ball rolling before another year of school! The others I contacted still haven't returned my calls/email. I started Googling ABA therapists in our area and was hooked up with Families Helping Families. If ever you're in a charitable mood and looking for a good cause, this should be your first stop. Anywho, I started receiving emails from someone I only know as "SuperSue". She put me on her distribution list and I began receiving emails about Autism events and ABA therapists looking to help. There was only one ABA therapist who seemed qualified enough to meet my standards. Again, I don't know much about ABA or Autism at this point, but she was educated and had Autism experience. I called her and we discussed Finnan's needs. She came over to the house and met with him. We set up weekly sessions. One week when she came over, she mentioned that she had another friend that was similar to Finnan. One of the things we're working on with Finnan are his social skills. She asked if we'd like to get a social skills partnership going with her friend. We agreed. The next week, we went to her house and met her friend and his Mommy. This is how I met Super Mom. Super Mom was Finnan's new friend's Mommy! At that time I was still overwhelmed and intimidated by the information as well as the people I'd met thus far who had been given a similar diagnosis. Granted, most of them I'd met online in groups and chat rooms for parents of ASD kids, but there she was. Live and in person.  A Mom, just like me. So unintimidating and kind.Trying her best to do right by her son; boy has she. She invited me to her house for a meeting she was holding for ASD parents that night. The topic was "The Diet". Shrouded in mystery!  She's had her son on this diet for a few years and has had great success. I agreed to come over. She didn't seem crazy and I was up for anything. Again, I want to and will do whatever I can to help Finnan on this journey. We tried medicine, it didn't work. A diet seemed like another thing to try.
  I went to Super Mom's house around 6:30 that night. I was first to arrive, followed by another newbie to the Autism Support Group. Super Mom showed us a slide show she'd made chronicling her son's life. I watched and I cried like a baby. I didn't know anyone else in this room, but I'd just watched Finnan on her television. Except he had Red hair and a different name. Other than that, he was the same. I was on board! She began telling us about the GFCF diet- Gluten Free Casein Free. Ironically, Finnan had already been on a Casein Free diet as he had been diagnosed with a milk allergy around 18 months. Could this be the missing link? You see, some people digest Gluten and Casein differently for various reasons. In some people, it acts as an Opioid. Clouding their minds, making them cranky, moody, aggressive, angry, hyper, or almost like they are high. It can affect them verbally and in some cases, physically. Think about it like this; if you eat something that makes your stomach hurt, chances are you won't eat it again. But what if you weren't able to make that decision for yourself? Either you couldn't speak to tell someone how it made you feel or you just didn't realize it was the culprit. With everything we know about food -how it makes us feel, how we react to food, what it does to us outwardly, how it's made/processed, and even the cancer theories on food; why would you keep eating it?
  Needless to say, we started the diet the following week. It required a lengthy trip to Whole Foods familiarizing myself with ingredients and brands. I could not have done this without Super Mom's help though. I went armed with a folder of information she had given me at that first meeting. She made it an easy transition. As I said in my first post, Finnan is a creature of habit. He eats the same 4 things regularly. If I had bread, turkey, PB &J, chips and Pizza I was good to go. So far the hardest part of this diet has been the cost. But it is WORTH IT! Since being on the diet, Finnan has far fewer outbursts, improved pragmatically, his speech is better and he's using words in the correct order- semantics. He's not as aggressive as he was.  Everyday is better than the last. As an example; before we started this diet, if Finnan tantrumed he would throw anything in sight at anyone, hit himself as hard as he could in the head, pull tufts of hair out of his head without flinching, scream for hours. During our second week on the diet, there was an infraction. He ate pizza out of the trashcan, regular pizza. I didn't know he had eaten it until later. We happened to have a Neurology appointment that day and Finnan was very sensitive to lights and sounds and insisted on bringing his lunchbox to the office with us. I didn't realize the lunchbox was still at home!Crap! In the office, Finnan turned off every light and whispered. He began to ask for his lunchbox, which I didn't have. When I told him I forgot it, he tantrumed. He started hitting himself in the head as hard as he could and pulling out hair. I was beside myself, but remembered Super Mom said I had to give it a good 6 months to make sure it was or wasn't working. When the Neurologist walked in and saw this, she set us up for a 23 hour EEG in hospital. Great! Finnan has to put under general anesthesia for any procedure because he falls in that 5% 0f patients who have adverse reactions to sedatives. No people, we go all the way! It is horrific. Later on that afternoon, Finnan was still tantruming and started to throw things. He threw the Wii remote at our mantle and knocked everything off. Including a birds nest he'd made me out of Pine Needles and painted clay eggs. It fell off and everything fell out. Finnan ran to his room and I followed. Usually I'll hold him as long as I can and speak softly until he's so exhausted he can't even keep his head up. This time he hit his head, cried and said "Mommy, I need to calm down! Talk to me Mommy, talk to me!" He'd never asked for help before or even seemed to realize I was trying to calm him down by speaking softly and holding him. I put him in my lap and squeezed him tightly and started to whisper "Its OK, calm down, its OK, shhhhh, its OK." He looked up at me and said "Mommy, I broke you nest." he let out a big sob and said "I made that for you at school. I'm so sorry Mommy." Trying to hold back my own huge sob, I smiled and said "It's OK Finnan, I fixed it. Its not broken!" I didn't want to alarm him by sobbing and jumping up and down, but there it was. Progress!! He understood consequence. I threw something and as a result I broke something.
  One of the best things that has come from this diet so far has been Finnan telling us he loves us. Before, we would say "I love you Finnan." and he would mimic us. Say it with the exact inflection we would say it. Parrot-like. Now he says "I love you too Mommy." He's also begun telling us he loves us out of the blue and with hugs. I can't even tell you what that feels like. If you've never had your child tell you they love you on your own, you understand. Don't ever take it for granted. Listen to everything your child says with every ounce of attention you have. As I'm typing, I'm crying thinking of how much that means to me. It means everything. Not just from Finnan, but from all of my children. From everyone I know and love. Hearing it means so much more now. I hear it.

Another Diagnosis

   This past year, Finnan began a Pre-K program. It was great. He met new people, tried new things, learned new things. In the beginning of the year, his teachers sent home notes about how sweet he was and how eager he was to learn. Those notes turned into "Finnan didn't have such a great day today." and " Has Finnan been sleeping well? He seemed a little off today." I knew he had been acting differently at home. Now it was at school. Finnan's "tantrums" started becoming more frequent. They were also being directed at someone. The only person who wouldn't fuss at him or put him in time out. His younger sister. She put up with a lot from him. I started noticing moments of absence in his eyes. Its literally as if someone flipped a switch. One minute he and his sister would be playing outside chasing one another and chasing dragonflies around the backyard then he would stop dead in his tracks, pause expressionless and the next second he would become violent and aggressive. During these moments of aggression there was no emotion or expression. He didn't seem to understand that crying and screaming meant pain and fear. As these moments became more frequent, I became increasingly worried and suspicious. My husband said it was his age and he must've been provoked. Every time? No. It took a lot for me to tell anyone other than my husband about my suspicions. When I did share, I was told that Finnan needed a good spanking or I needed to take away everything he cared about. I had put him in time out, taken away all of his toys and privileges. None of this worked. He didn't understand consequence. He still doesn't.
  Four weeks after our third child was born there was an incident. I was home alone with the kids and was feeding our newborn in my bedroom. I could see the Finnan and his little sister in the living room. I had put on a movie and let them eat their dinner in the living room. This would allow me to feed the baby without interruption. There was a loud thump followed by a thunderous roar. I put the baby in her bassinet and ran into the living room. There was blood everywhere. My daughter was holding her head saying "I'm leaking!! Mommy, my head is broken! Finnan pushed me!" I took my shirt off and held it against her head. Trying so very hard not to lose it. Everything was in slow motion. I glanced over at Finnan and he was just standing there, expressionless. No emotion. That was it. At that point I didn't care if anyone else saw the things I did. I didn't care who thought I was crazy or who thought he was just a four year old little boy. Later on that evening in the ER, I told my husband that I had made an appointment for Finnan to meet with a Psychologist. I had made it a few weeks earlier and was still trying to decide whether or not I needed to keep it. He didn't say a word when I told him. I think at this point he realized Finnan wasn't just an agitated four year old little boy. Something wasn't right.
  The Psychology Dept. had sent out a packet of forms for us to fill out as well as his teachers. Surprisingly, the answers his teachers had were similar to mine. I wasn't crazy after all! When Finnan went for his appointment the Psychologist said " This shouldn't take very long. We should be finished before lunch." We got there at 8:15 that morning. When 11:30 rolled around,  she walked out and said they were going to break for lunch. I took Finnan downstairs to the cafeteria. We grabbed a quick bite and then went to play on the playground. When we returned, Finnan came out every 30 minutes or so to go to the bathroom. He actually never used the bathroom. He just couldn't sit still for that long. At 4:45 Finnan came out with the Dr. and she said they were finished. She asked me to set up an appointment for two weeks time to receive the feedback. She asked if my husband could be present as well.
  Before our appointment my husband and I had made a decision that we would not medicate Finnan. I felt like everyone was medicating their children for some reason or another and I didn't want to be one of them. Our attitude quickly changed once she began to tell us about Finnan. She started out with the ADHD diagnosis. Really? You don't say! I didn't want that label. Everyone I knew had some sort of Attention Deficit label. But alas, there it was. She then went on to say Finnan was "autistic-like" and "borderline impaired" in his social skills as well as his ability to retain information; specifically his education. She gave us numerous references to support her diagnosis. Everything was a blur and whirling around in my head. All I heard was Autism. She continued speaking , referencing, diagnosing, referencing. Wait, did she just say Asperger's? I swear she said PDD. But did she just say Asperger's? She was telling us the differences between Pervasive Development Disorder and Asperger's. Apparently they can be quite similar and depending on the Dr's school of thought, they are different or can be under the same ASD umbrella. She went on to tell us that there was an Autism Support Group the last Tuesday of every month at the Children's Hospital parenting center,that Finnan needed to begin ABA therapy, that we needed to purchase these DVDs to help him with facial expressions and she was going to send us a list of books to read and to read to him. If you've ever seen the show "Lie to Me", you'll understand the facial expression DVDs. They are from the real Dr. Lightman. His name is Dr. Paul Ekman and he has a series of DVDs and books to train FBI/CIA agents on facial expressions and their meaning. Its fascinating.
I voiced my opinion about using medication by saying "We initially didn't want to medicate, but based on your feedback I think we're open to anything." She told us of our options, to which I replied "I want him to succeed in school, but I don't want to change his personality." She replied with words that were like a knife to my heart- my mommy heart. She said "But you do." I felt like a complete failure as a parent. I guess I did  want to change his personality. There it was! She said what I now understand I couldn't say or even allow myself to think. How could I want to change my child's personality? Why would I? But I did. Ultimately, I did want to. I wanted him to be social and make friends. I didn't want people to be afraid of him. I didn't want him to be left out or made fun of. I've been there. It's not fun being different. Its not until you're older that you understand being different is an advantage. It helps you see things clearly and for what they truly are. But Finnan may never understand or see clearly.
We left that appointment with an appointment to see Finnan's Neurologist to discuss a Pharmacological approach. I did it. I medicated my child. At that point, I would've done anything to help him. I still would do anything to make this part of his journey easier.
  The doctor told us we'd see an immediate response to the medication. We'd start off on a low dose and increase if necessary. The first day on the medicine he seemed OK. I thought perhaps he was tired or not feeling well. It couldn't possibly be the drugs I just put in his system. Day 2, I knew he wasn't tired and was feeling just fine. He was however, a Zombie. He sat on the couch all day. All day. He didn't eat. He didn't really speak, except to ask me to turn on the Wii. We kept him on the medication for 4 days. To this day, I cannot believe I did that to my child. I am not putting down any parent who chooses to medicate their child. Whatever works for your family and your child is what you should do. If its medicine, then go for it. It just didn't give us the results we were looking for.
  I spoke with the Dr. and explained to her what the meds had done to Finnan. She agreed they weren't the right ones and that we needed to try another. She called in the new meds to our Pharmacy, luckily there were issues with the type of medication and Finnan's age. We played phone tag for another 2 weeks and I never picked up the Rx. You're probably wondering why I said "luckily and fortunately"... when you read my next post you'll understand.

I really should give a little more background...

   After reading my first post, I realized I hadn't given any background info on Finnan. "Let's start at the very beginning, a very good place to start." That was for all of you Sound of Music fans out there. Just kidding.

  My pregnancy with Finnan was anything but average. We were trying to get pregnant for what seemed like forever. In actuality, it was only about 7 months. I had what is known as "HG" or Hyperemesis Gravidarum, we all know it as severe morning sickness. It was bad. Really bad. I was working in NY and taking the subway to and from work everyday. Which normally isn't such a big deal, but the morning sickness and movement did not make for a pleasant commute. The first time I threw up in my purse, I decided a gallon Ziploc bag might be something I needed to keep handy. On the weekends I stayed in bed. All day. My husband and I were sharing a house with a bunch of our guy friends. I will be forever grateful for their kindness and understanding during this time. They put up with my mood swings as well as my morning sickness.

   I couldn't eat for the first 6 weeks without getting sick. I drank a lot of Gatorade. It was the only thing that worked. I got a cold during this time as well and went to see my GP. He suggested I go to my OBGYN immediately and tell them about the sickness. I thought I had to deal with being sick. I didn't realize there were medications to help make it a bit more bearable. My OBGYN wouldn't see me until I was 8 weeks along. So I dealt 2 more weeks with the HG. At exactly 8 weeks, I had a seizure. On the subway no less. On my way to work. I was taken out by stretcher and what seemed like 50 FDNY & NYPD officers in the middle of Times Square. I remember hearing "The train has been delayed due to an ill passenger." Humiliating. I couldn't speak without gagging. A man working at the stop came over and gave me a Dunkin' Donuts napkin and a pen and asked who he could call for me. I wrote "My Hus 347-539....". I was then taken to St. Luke's where I waited. I was by this time very late for work and hadn't spoken to anyone I knew. I asked the nurse where my husband was and she handed me her cell phone and said "Call him!" I thought for sure we'd lost our baby. Smooch showed up. He held my hand, tears in his eyes, and said "is everything OK? Is the baby- OK?" At that point I didn't know. A nurse came in with an Ultrasound machine and that was the first time we heard Finnan's enormous heart. Beating. He was fine. He was more than fine. He was strong.

  I went to see my OBGYN regularly. Due to my medical history I was also seeing a Perinatologist. We fondly referred to him as "Dr. Nudiebar". He was an angel. I actually looked forward to my visits with him. He really cared about my well being as well as my baby's. I was prescribed Zofran in tablet form. And on my frequent visits to the ER, it was given intravenously. I was always dehydrated. No matter what I drank or ate it seemed to just disappear. For that reason, I was hospitalized quite regularly. It stunk! Smooch would come and spend the weekends with me in the hospital. He and his friends would bring me Outback takeout. When I had the meds through an IV I felt like a million bucks! Then I'd go home.

  When I was finally able to eat, all I wanted was watermelon. I would eat 2 whole watermelon's a day. Then I moved on to Green grapes. I could eat a few pounds of those a day. Then I moved on to Pizza. Which I normally am not a fan of. But, I would eat 1and a half large Pepperoni Pizzas. The guys would get home from practice, see a Pizza box and say "Great! Pizza!'' Yeah, there wasn't any pizza. Finnan and I had eaten it. Then I moved on to Burgers. I don't even like Red meat. But, again that's what we wanted, Finnan and I. So my friend Brian and I would try different Burgers from around town. We finally settled on Applebees. They were the best.

  Smooch and I ended up moving out around the middle of our second trimester to our own place. We had a nice apartment and some really crazy hoarding neighbors. But it was our first place together. We prepared for our baby's arrival. At the time, we thought Finnan was a girl. Her name was Campbell. We were looking forward to Campbell's arrival. Ha! On one of our visits to the ER, a different Ultrasound tech performed the sonogram to check on Campbell. We always got the same girl when we went. It didn't matter what time of the day or night we went, she was there. However, this time it was different. She asked if we knew what we were having and Smooch replied "Yes, a little girl." She said "No..." Smooch said "Yes, its a little girl." She says " Do you see this? Little girls don't have these." I never saw Smooch jump so high. Not that he didn't want a little girl, he just didn't want her to be the first. She needed protection. She needed a big brother. Campbell was infact Finnan.

   At one of my regular visits the doctor said "Hmmm...your fluid is low. Its very low actually." Then there was a long pause and he said "The baby's head is quite large. Get changed and meet me in my office." I was FREAKING! He sat me down and told me I was on immediate bed rest. Strict bed rest. If my fluid didn't come up I'd be put on hospitalized bed rest for the remainder of my pregnancy. I went home and told Smooch. What had I done? I read the books. I did exactly what they said. I was seeing 2 doctors. Why did this just pop up all of a sudden? In my mind, trying to figure this out, I had myself convinced that all of the amniotic fluid that was supposed to be protecting my baby had found its way into his head. That's why my fluid was so low and his head was so big. I stayed on bed rest for 6 weeks. It was horrible. I couldn't cook, clean, socialize, sit on the couch, get the mail. Nothing.
 
   My fluid did not go back up. Finnan was born at 36 weeks via C-section. He was 6 lbs. 1 oz. He was healthy. He was jaundiced, but otherwise fine. On our 2nd day in the hospital Finnan became possessed. He would projectile vomit across the room. We had to supplement with special formula. Finnan had GERD. Nothing uncommon, just one more thing Finnan had to deal with in his little life.

 Finnan received all of his vaccinations on time and I was not afraid to call the Dr. if I suspected something was wrong with him or had questions about his care. During one of our visits to the Pediatrician, she commented that his head was above average for his age. On his growth chart, his head was always on a curve of its own. It was in the 96th percentile. She wanted to do a CAT scan. This would be the first of many. Finnan's results came back and I remember the doctor saying " Everything looks fine, they noted something on the report, but said that its probably a technical issue with the machine." Last year while going through Finnan's medical records, I came across the report which clearly stated "Absence of the Septum Pellucidum. Possible technical issue with machine." I was sick to my stomach.

  Finnan had been going every 6 months for scans because of his head size. At one visit the Dr. said that due to the excess fluid around Finnan's brain, we would either have to put a shunt in to drain the fluid down his spinal column or he could wear a helmet to put a little pressure on it and push it out. It didn't have to be done right now as his fontanels had not started to close. But if the fluid was still an issue when they did, we needed to have a plan. Of course we were going the helmet route. It was gonna be the coolest helmet ever! The fluid started to go down on its own and thankfully neither option was necessary.

  When Finnan was 4 months old, we found out we were expecting again. We decided to make a change. We wanted a different lifestyle for our growing family. I posted my resume online. I had a few offers out of state, but the best came from New Orleans. My family was close so it just seemed like the right place to go. Finnan and I moved down and started to get to know the area. We lived with my brother and his wife for a month until we were able to move into our house. Finnan was really sick. I mean really sick. He was throwing up all the time, had horrible sinus issues, ear aches, coughing. You name it he had it. I just thought it was because of where we came from. These must be allergies. The humidity and new vegetation had to be the cause. At around 18 months old, I asked Finnan's pediatrician to test him for allergies. He'd just discovered pizza and spaghetti and always had gastrointestinal issues after. I swore he was allergic to tomatoes. Turns out it was milk! To be more specific, it was Casein. Casein is a milk protein. He was off of milk completely. This is when I got my first degree from Google University. It was in Milk Allergies. I spent a lot of time at Whole Foods and health food stores. Finnan didn't like any of the milk options. He stopped drinking anything white or creamy. Even chocolate milk. We switched to OJ with all the extra vitamins. I wanted to make sure he was getting what he needed.

  My husband took Finnan to the doctor one day for a cold and cough. He needed relief, so Smooch took him to the doctor. Because he was a walk-in, they saw a different doctor. Not his regular Pediatrician. Smooch mentioned to her that Finnan had been doing some strange things with his head. He would bang his head on anything hard; the kitchen floor, the walls, the car door, the floor in the middle of Target. Didn't matter where we were. He banged his head. He'd also have these outbursts where he'd just start screaming a bunch of jibberish. This doctor suggested a CAT Scan again. She was aware of his history and obviously his head size. We took Finnan for his CAT scan the next week.

 Mardi Gras Day 2008 at 8 o'clock in the evening, the phone rang. It was the pediatrician. Smooch had been at the doctors office the day before for Finnan's follow up. He met with the same doctor that was now on the phone. She said "Hi, this is Dr.X. I have the results of Finnan's CAT scan." My heart sank. It was late, she was a doctor, it was Mardi Gras Day. I just knew he had a tumor. She began telling us that Finnan was Absent Septum Pellucidum.  Smooch was scribbling on a paper towel what she said and spelling it phonetically. I ran for the lap top while he was still on the phone. It took me a few times to get the spelling correctly, but thanks to Google it wasn't so hard. I found it. I could deal with this. It wasn't life threatening. She apologized for not having spoken to my husband about it the day before, but explained she had never heard of this and needed to speak to colleagues and research more before speaking to us. Smooch was very upset that she didn't tell him when he was there the day before. We now understand how she felt. At the time, there was hardly any info online or in the library about it. She advised that we needed to see a Neurologist, Neurosurgeon, Endocrinologist, Opthamologist, Cardiologist, Urologist, etc. I began making the appointments the next day. Availability for these guys was 6 months out. In the meantime I researched like a fiend. Make that 2 degrees from Google University.