Saturday, November 1, 2008 - Update

Tell me another story, daddy!

My daddy's home!
Mom, don't take me away. . .I'm playing with dad.

My husband is amazing. Did you know that he's decided to drink Cod Liver Oil every day because I have to? Some of you saw him "in action" when Olivia was in the NICU. Quite a few of the nurses had to ask if he was in the medical field because of his wide range of knowledge of procedures/medications that were part of Olivia's life. When he cares about something, he devotes his life to it. He's helping me decipher and make sense of everything that I'm supposed to do and what to stay away from. He lets me sleep in on the weekend and rest when I need to. He even ate green bell peppers today at lunch because if I have to eat more vegetables. . .he will too. He's amazing. . .I don't know what I'd do without him. And, Olivia is a much happier baby now that he is home.

Friday, October 31, 2008 - Update

Halloween 2001 was a very special day. Ryan and I had been dating for about 7 months, we had already gone engagement ring shopping and I was wondering when he would propose. He asked what I wanted to do on Halloween. His sister was having a Halloween party at her house with the whole family, so I thought we should go over there. I showed up after work and Ryan wasn't there. I was told that he went out for ice, which wasn't uncommon. Everybody was busy fixing dinner and tending to Alex and Julia (the only children at the time.) The doorbell started ringing and I remember waiting for someone to get the door. Come on, people, there are trick-or-treaters waiting for you. When no one went to the door, I resigned myself to be the treat giver and grabbed the bowl of candy. A little child dressed all in black came to the door. It was extremely windy that night and I had trouble propping the door open. The little child reached in for some candy and I wished him a Happy Halloween. I was waiting for him to leave so that I could shut the door, but he was fiddling around in his treat bucket. I thought, "Okay, come on. . .I give you candy, you say thank you and head on to the next house." Then the little child pulled out a ring box. . . took off his hood and I realized that it was Ryan. . .down on his knees like he always said he would be. I was flabbergasted and I hugged him and almost forgot to say yes. My family later came over for dinner and we shared the good news (of course, everyone knew but me.) I can't believe that was 7 years ago. We had a long engagement as Ryan went back up to K-State to finish out 3 semesters and we got married June 28, 2003 after he graduated.

Me and my little trick-or-treater. . .er I mean. . . fiance.
Had I known I was getting engaged that night, I would have done a little something with myself.

Newly engaged.

Who would have thought that 7 years later, we would have such a beautiful and amazing daughter!

Olivia and I leave in less than 6 hours to pick Ryan up at the airport. It seems he has been out of town forever! Okay, so it's only been a week, but it's been an excrutiatingly long week. He has been in Los Angeles at a Microsoft professional developers conference. We miss him horribly and can't wait for him to come home!!

Thursday, October 30, 2008 - Update

More Halloween pictures. . .
I don't wanna be a giraffe anymore!

Olivia had her 14 month checkup/vaccinations today. She handled her FIVE shots like such a trooper and only cried for a few seconds. She has also made it on the actual growth chart (not the preemie one.) Hooray!

Weight: 17 lbs 1%

Length: 27 1/2 in 2%

Head circ. 43 3/4 cm 5-10% (She has a big noggin!)

It doesn't look like she'll get the Synagis shots. It's mainly because she is 1)not in daycare 2)has no other siblings (she still would if I had any say in it) 3) she has not been on supplemental oxygen, steroids, etc. in the last 6 months. I'm done fighting about it. I'll just have to continue being ever-vigilant and keep her healthy this winter. Her doctor said that her lungs sounded pretty clear so I'm hoping that she could handle it if she did get any type of respiratory illness.

I start on my cortisteroids (Cortef) today and I will probably have to remain on them for 6 months. That makes me nervous because of all the side effects that it can create. It also stops your body from making it's own cortisol in hopes that when you are weaned off. . your body will be healthy enough to begin again. Olivia still remains my number one concern. As a mom, I don't think you can put yourself above your children. Hopefully, I have it in me to take care of myself as well.

Tomorrow is not only Halloween, but a very special day for many reasons. I'll share those with you tomorrow.

Things We Learned Today. . .

Kerry's the greatest (oh, I already knew that.) She does so many fun things with me . .even if it means sitting in the middle of the kitchen floor. . .if that's what I want to do.
I love minestrone soup from Olive Garden. . .especially the pasta.

Mommy has to take all of these things (some up to 3 times a day) in order to get better.

Mommy can't eat any of these things anymore.

I don't have too much time to write tonight, so I'll make this quick. After my appointment today, I felt like the unhealthiest person on the planet. I learned my cortisol levels are really, truly severly low and I have a long road ahead of me. I learned that they don't get this low overnight and stresses have added up over a long period of time. The last year just really did my adrenal glands in and they are almost entirely shot. It may even be the cause of my PCOS/infertility. So, I urge any of you with hormonal imbalance causes of infertility to find out about adrenal fatigue. There are mild, moderate and severe forms of it. . .don't wait like me until it's so severe that you feel you'll never get on top of it. Your adrenal glands control 50 or so hormones in your body and are crucial to helping you function. In addition to a smorgasbord of supplements that cost around $200 / month, I will have to do a round of cortisteroids. I'm supposed to start eating gluten-free food, no dairy products, tons of vegetables and protein. I have to eat 5-6 times a day to keep my blood sugar levels up and I have to rest as much as possible. Exactly how I'm going to do that. . .I have no idea. Counseling was also recommended to help me cope with stress (and I thought I was coping fairly well.) Of course, if the insurance company would just approve Olivia's Synagis shots, my stress level would decrease greatly, but it doesn't look like that is going to happen.

Anyway, I don't know how I'm supposed to do all of this stuff. I had to make labels for all of my supplements (Kerry's idea) in order to figure out what I'm supposed to take when. It can take 6-18 months to feel normal again (of course, the more severe. . .the longer it'll take so it's a long road for me it seems.) My hope is that someday Olivia will not remember that her mommy was so tired and instead she'll describe me as "energetic." Thank you all for your support and prayers. I know many of you have been amazed at my strength throughout the past year. . .I feel like I've let you down. Turns out. . .I wasn't so strong after all. . .

Tuesday, October 28, 2008 - Update

Halloween preview to get you in the mood

Well, things just keep going from bad to worse. Olivia cried for two hours last night because I wouldn't let her walk around the house the way she wanted to. I've never met such a determined little girl. Would a walker, such as this one be okay for her? She'd be able to walk around the house without her arms being pulled up. Maybe I could get it for her as an early Christmas present.

And on to the worse news. . .Olivia's cousin, Katie, has RSV so it is now way too close for comfort. Poor Katie. Because of that, Grandma Mary can't watch Olivia because she's been exposed to it. She was supposed to watch her tomorrow when I had my doctor's appt. I can't reschedule my appt because I have to do something about this fatigue. I'm on the verge of not being able to function and my stress level is through the roof. My mom is sick so she is unable to help me out either. My dad would help in a heartbeat, but I don't want him to take off work now that he has a job that he enjoys. Things get even worse than that, but I won't share all my woes on here. Kerry to the rescue!! How am I ever going to be able to thank her? She's coming over tomorrow to watch Olivia so that I can go to my appointment. Kerry has saved the day more times than I can count. I'm going to buy her lunch and dinner tomorrow and lavish her with praise, but is that really enough? I guess she gets to hang out with Olivia. . .her favorite baby of all time. . .that's probably it's own reward. And Olivia LOVES her Kerry!!

Monday, October 27, 2008 - Update

Who's down with OPG?
My little gangsta

I don't know why Olivia looks like such a gangster in these pictures. I thought it was hilarious when I went to look at them. Unfortunately, we weren't headed anywhere fun. . .we were headed to her doctor's appt with her developmental pediatrician. It didn't quite go as well as I planned and I was thankful to have Kerry with me. Hmmm. . .where to begin.

Olivia first visited with an occupational therapist who was very concerned about Olivia's retracted shoulders and inability to transition from one position to the next. She thinks that Olivia is a prime candidate for intense occupational therapy. . .more than Rainbows has been giving her. They have an outpatient clinic at Wesley that she can go to, but that would require me to get Olivia out a lot more often this winter. Without the protection of her Synagis shots, do I risk exposing her to so many things? Is it better to expose her to get the therapy she needs or is staying healthy more important? I don't know and I am so extremely stressed about it.

Her retracted shoulders are still a huge problem for her that is preventing her from progressing in her development. Olivia wasn't able to complete any of the tests appropriate for her age because they all involved manipulating toys and grabbing onto things. Again, she has still come a long way but is nowhere near where she should be. Also, her walking?? It has to come to an abrupt end. Her doctor says that for most children, it is not a concern if they walk before they crawl, but for Olivia it is HUGE. When we walk her around the house, we are forcing her to retract her shoulders even more. So, it's like we are creating an even bigger obstacle for her to overcome. Needless to say, I'm pretty stressed about the whole thing and frustrated that I don't know what to do for her. I think that's all I should go into for now.

***The most frustrating thing for me (besides the whole Synagis issue) is that I am not supposed to let Olivia do any of the things that she loves to do. I have to limit her time in the jumperoo and not let her walk around the house. Needless to say, she's getting a lot of pony rides around the house. . . .I don't think that negatively affects her in any way.

Sunday, October 26, 2008 - Update

Come on, Kerry, let's go!
What's down there?

Today, Olivia and I took a trip down memory lane and drove to my old hometown of Park City. This is where I lived until I was about 14 years old. It's also where Kerry lives, so we went to visit her and Olivia met Kerry's parents as well. It was nice to get out for awhile. Olivia seemed to make herself right at home. She was thrilled that Kerry helped her walk all around the house. I was thrilled that Kerry helped her walk all around the house. That meant I got to sit and relax for a bit. Thanks for the nice afternoon. Thanks to my dad for helping me out today as well (and for walking Olivia around the house.) Apparently, that never gets old!