Life with a 2 year old

     If last night was any insight to how the two's are going to be, I quit. Ami woke up with a blood curdling scream, like he was dying. We couldn't get him to calm down. He was staring through you, while clinging onto you for dear life, and screaming.  It lasted about 10 minutes, leaving all of us shaking and crying. I don't know if he had a bad dream, or if he was "sleep walking," or if he was in pain. Whatever it was, if it never happens again that would be awesome.

     Otherwise we had a wonderful birthday weekend. Year two was much easier than year one. Let's see what year three has in store for us!!

Poor Josh

     Growing up SUCKS. I am going to freak out on someone at the bank that owns our mortgage. On Sunday I have to go on an 8 hour car ride with a very active toddler. Monday I have to take that toddler to a new doctor, and possibly get more life altering news. Then I have to drive 8 more hours home that day.

PRAY for my husband. 

I have so much stuff to do, and get ready for. Nashville is in a few short weeks, after that I get to go on a vacation, and then after that is Ami's birthday. I feel like the summer is already gone, and it hasn't even started yet. I am really happy that we are back down to one therapy every week. It got to the point some weeks that I had some where to be everyday. Right now I am focusing on Nashville. The car is finally up to the drive, and the hotel is booked. I still need to get together a travel pack of things to entertain a toddler on an 8 hour drive, I need to talk with the oxygen people about getting bigger travel tanks, and order a portable pulse ox monitor. I am really anxious to hear what Dr. Young has to say.
     At the end of July Josh and I are going to Florida with Trista, thanks to her having shitty friends!!! I am so excited. I haven't seen the beach in over 4 years! Yeah I know... We are going to be driving to Destin. I haven't been there since I was an early teen. Yes we are leaving Ami. Yes I am freaking out. It's going to be very hard to do, but it is something that is very needed.

Feeling emotional

So I know I'm PMSing but my heart is really heavy today. A friend of mine's little boy had a seizure over the weekend. He is okay and they will be doing some tests soon. Another friend her little boy has RSV. I guess I'm just sad because I know the amount of stress and worry these two moms are going through. I hate it when kids are sick. It breaks my heart. I hope everyone gets better and has all of their answers very soon. Prayers go out to all of them and their families.

Looney mommy gets inked

I got a tattoo on Wednesday for my son's ILD. I love it. Sure its not perfect but its a forever way to show my son how proud I am of him. I want him to know that I support him, and I'm trying to bring awareness every where I go. Since his disease doesn't have a ribbon or a color I decided to go with a pin wheel. The pin wheel is based off the one from the foundation's website. I had it colored blue and white to represent air. It took an hour and a half and it hurt really bad. It still hurts really bad. But when I think about everything he has been through its a very small sacrifice on my part. I want people to ask me about it, I want to tell people about this disease that affects my son and children like him. I hope he likes it when he gets older. Mommy loves you Amadeus.

Looney mommy strikes again

Week it's been two weeks today that Ami got his g tube installed. I have to say I'm still not happy with it. It's a giant pain in my ass, it still wierds me out, and I all around hate it. Took him to the doctor on Tuesday for a weight check. He's lost 2 ounces. Yes I know it's only two ounces but good grief he ate more calories than he needs to maintain his weight and he lost. Tuesday I was ready to throw in the towel, and beat my head against the wall. So we've drastically upped the amount of food we give him everyday and what happens he throws up. So we lost a good 200 calories. And poor Daddy, he is the one who got puked on. I thought he was going to throw up too. Over all it's not been a good week. It seems nothing has gone right and he still has one more doctors appointment this week. I love my son and who he is, but it would be nice to have normal problems for once. It seems like my life is becoming more and more stressful as he gets older. He has 3 doctors he sees on a regular basis, soon to be 3 therapies,  SSI people who want monthly updates, plus work, home, and family. I have two calendars just to know what I'm supposed to be doing every day. Looney mommy is about to disappear for a week or so and come back tanned and refreshed. *wishful thinking*

Looney Mommy and her looney day

It's been a day. Got up at 4:30 am, was at the hospital at 6:00, and surgery around 9:00. Needless to say I am very tired. Ami's surgery went well. The g tube looks gross. He won't eat, has had one wet diaper, and is throwing up. He won't drink anything. Until he can keep clear liquids down we can't give him anything else. He is on IV morphine and antinausea meds. We haven't even began g tube training.
    Surgeries aren't getting any easier. Hospital stays are though. Its very hard to hand over your child to someone you hardly know and know that their life is now in someone else's hands. I hope these surgeons under stand that. Blind faith is the only thing that helps me get through those surgery hours.
     Hospital stays are easier. They still suck but they are easier. I just give my little speech about Ami and everything he's got going on. I speak up and don't wait around for things. I know what to pack, where to go, and how to get what we need.
I am ready to go home. I'm ready for my baby to feel better. This mommy is going to bed.

Water works

Today is the first time I actually cried about the g tube. I ordered a 'tubie friend" for Ami last week. These stuffed animals have feeding tubes just like the one the specific child has. Ami's bear has a Mic-key button just like the one he is getting on Thursday. It has a belly button that has Elmo, which is his favorite. The belly button is a small piece of cloth that goes under the g tube to soak up any leakage and to provide a barrier between the tube and his skin. This bear is so cute, but geez did it make things hit home. I HATE THIS!! I hate everything about this. I hate putting him through pain, and surgery. I hate that he can't be a "normal" 17 month old. I hate that we can't do "normal" things. Taking a trip to just the store is a hassle. Going to Grandma's to spend the night takes an hour to pack for. Forget a vacation. I love my son. I wouldn't have him any other way. I know all of this makes him who he is, and who he is going to be, but why can't it be less heart breaking?

     This blog is for moms written by a mom. It is to show what it is like in the life of a mom. The ups, downs, and everything in between. What I have to say may not be for everyone. It may offend some, and if it does I am sorry. You can choose to read what I have to say, or you can choose not to.
     I write things how I think them and how I talk. When something pops in my head I write it down, when I'm done with that thought I'm done, and I will move on to the next one. So, I'm going to warn you that my posts may be jumpy at times. I will try to make everything flow as well as I can.
     Let me start off telling you a bit about myself. I am a 26year old first time mom. I am married; coming up on 4 years. I have a degree in Early Childhood Development, and have worked with a wide age range of children for several years now. I live in a small two bedroom house in a small town in Missouri. My whole family, and my husband's family live in the area. Most importantly I have the world's best son. He is the greatest thing that has ever happened to me. My husband's name is Josh. He is a high school graduate from another small town near by. He works in the fabrication department of a local large outdoor store. My son's name is Amadeus. He is 17 months old. He will most likely be called Ami in this blog. I have two dogs, and a cat. I have a mortgage that never gets paid on time, I have a car payment, and several maxed out credit cards. As you can see we are your average family, from your average town.
     My goal is to write a blog that shows that you that you're not alone. Their are other people who are dealing with the same type of issues you are. Finding people that are going through the same things I am has been a saving grace.
    My son has a rare lung disease. It is called Interstitial Lung Disease. He was diagnosed April 2011 at 7 months old. Ami was a normal baby until he was 3 months old. He got sick for the first time in November 2010 with pneumonia.Two weeks later in December 2010 he was hospitalized for the first time with RSV. He was in the hospital for 6 days and had a really hard time getting over it. In February 2011 the pediatrician realized that there was something more going on than just recurring respiratory illnesses. He had stopped gaining weight, and stopped curving on the growth chart. He was also showing signs of having pneumonia again. This began the long list of tests. He was tested for every lung/heart disease known to man. In April 2010 he was hospitalized again. His chest x-ray looked like he maybe leaking air into his chest cavity. We were introduced to a pulminologist for more tests. He was put under anesthesia  for the first time. It was finally a CT scan that showed the problem. Ami's lungs look like they have spider webs in them. The doctor explained to us that he had a lot of diseased and scared tissue in his lungs. Not in the airways or the air sacs, but the actual lung tissue it's self. He has had several diagnosis tests done to see which type of Interstitial Lung Disease (ILD) he has. He had seven different diagnosis tests done, being put under anesthesia for every one of them. He had two CT scans, a lung biopsy, two bronchial-alveolar lavages, an infant pulmonary functions test, and he got his tongue clipped in 2011. We've been through some shit. He is about to get his g button feeding tube next week. Surgery #2!!
     I am less than excited to be getting a feeding tube. I hate putting him through any kind of pain. I know that if I want him to thrive this is what has to be done. I have a feeling getting the feeding tube is going to be like my c-section. Scary as hell, painful, but now that it's over I wouldn't do it any other way. So next week I am going to be very pissy, especially Thursday, and I will be PMSing. Please pray for my husband.
     I had what I call "mommy freak out moments" the other day. I was laying in bed trying to shut my mind off and Ami kept popping in my head. I keep trying to think of ways to physically and mentally prepare for all of this. When all of a sudden I got really mad/sad/angry and decided that I was going to keep Ami in a bubble. No one was allowed to come over or near him. Everyone would wear a haz-mat suit and not touch him ever again. When I came back from crazy and realized where I was I about started crying. Am I crazy? Do I need to be committed?
     That's when I decided to start a blog. Because, I know I'm not the only mom ever to go crazy, even for just five seconds. Believe me my mom went to crazy town, and I've heard some stories about my mother in law. So I hope you enjoy my crazy, beautiful life.


I'm usually off in my own little world because, I like it better there.