2 weeks

Ami is now 3. He is growing and thriving. He is still under the care of several doctors but doesn't go to therapy any more.  He is my world and my world is about to get a rude wake up call.
In 2 weeks baby #2 will be here. This time a girl. Persephone Olivia will be her name.  I am so nervous about being a mother of 2. We don't know if she will have NEHI or if she will be normal. We won't know until she gets her. If she does have it we don't know the severity of the disease until she gets here. I remember being pregnant with Ami and being so excited. Now I'm just terrified. I don't get the luxury this time to just assume she will be this little pink thing with 10 fingers and toes.  I don't get to just dred the up all night crying, and the spitting up, and the weird poops. I have to worry about respiration rates, calorie intake, nursing while struggling to breathe, and every little germ imaginable.  Will she come home on oxygen? Will she have to go through a 100 different tests, blood draws, and xrays? How young will she be the first time she gets put under anesthesia?  Therapies and bi-weekly doctor visits.
On top of it all my heart breaks for my son. Will he feel included?  Will I be able to take care of an infant while still taking care of him? Will he resent her and the attention she needs? I'm still trying to figure out how it's possible to love another child as much as I love Ami.
2 weeks...

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*