A little of this and a lot of that...

Well, it has been some time since my last post. I promise to get better at this. Sometimes, I just don't know what to write, but I need to just type...like I am doing today:)

Ava is currently yelling at me because she is done playing on her mat. She doesn't usually cry, but she yells like she is this 15 year old telling me what to do! It is actually kind of funny because she has this attitude already. She is doing well. We went to see an ednocrinologist last week just for precautionary reasons (because she was diagnosed with her optic nerve hypoplasia, it tends to affect the pituitary gland in many cases). Everything looks good, but they drew blood to do further testing just in case. I was sure that was going to be a scream fest for Ava, but the child curled her lip then started chatting with the nurse! No tears! These babies are just plain amazing. I want to cry when I get blood drawn! So, I will keep you posted on those results. She is also supposed to go for an MRI (check up) next month sometime. She will have to be sedated for that, so I am a little nervous about that. But I really am curious to see what her MRI looks like since the last one she had was at birth which showed all fluid and barely any brain. Talk about discouraging, but it the brain is an amazing thing. And the way she is developing, just shows how umpredictable and even more amazing that organ is.

Tyler is doing extremely well. He managed to tangle himself in his sheet last night like a big rope and fell out of bed. I came running in and couldn't help but start laughing because I just have no idea how he got like that. It was like he wrestled an alligator or something! Anyway, he was fine and went right back to sleep. As for potty training, well, he is officially a big boy.....poopies and and all! That's right. He does it all on the potty now and goes without any help (I am still the master wiper though..hehe). He doesn't even have accidents at night! But I am still not ready to take him out of pull-ups at night yet. I know, more of a security for me than him. But it keeps me sane. So, I continue.

He also went to the air show with Michael on Saturday. He came back and told me all about how they were "really, really loud". He is just too cute. And with Michael working so much lately (70+ hours a week), I think Tyler really enjoyed his time with his daddy.

Well, Ava is going to go hoarse if I don't go over there and get her. I promise to be back sooner this time! Oh, and I will try to get a link up with some photos in the next day or so. Keep a lookout!

Froggy potty and Elmo "underpants"
Line the living room floor and hall.
In success he gets a small treat
Along with praising, dancing, singing and all.

Cookies, fruit snacks and even a brownie,
are useful in getting him to sit
Oh, how about cartoons or a trip to the park!
Is this birbery? Maybe just a bit.

Number two is the issue at hand
He is scared to sit and go
So he quickly paces the room in circles 
eventually with a little tail in tow

A minor little hurdle
that we can work through
Maybe teaching him to do laundry,
that will be his cue!

So, he is peepeeing on his own now
and is not even an issue
For Tyler is a "big boy now" and
Oh no- I think I need a tissue!

Yes, I know. I need to get a life. Ha! I feel like I am always writing about Ava and her updates, so I wanted to decicate this post to my little guy, Tyler. He is actually doing fantastic with potty training seeing that we are only a week into it:) Now, if only he can get over this fear of the whole pooping part! Or at least only go every few days....hehe. He does love is "underpants" though and would choose that over a diaper anyday. They just grow so fast!

So, Ava was baptized on the first Sunday of March. It was chaotic, But I wouldn't have traded the day for the world. We were so blessed to have Brian, Betsy and the boys stay with us for the weekend which Tyler just loved! He still wakes up in the morning asking "Where's Mac?" Gotta love that boy!

The Baptism was nice, but I was a little saddened by the fact that there were 4 other baptisms that morning. Yes, you read that right. 5 baptisms total. It just felt a little impersonal, and if I had known this before, we easily would have waited another month or so. The positive is she is baptized, and our promises were made. That is what counts.

I haven't really shared my feelings and experiences of when I initially found out about Ava. It was hard. The hardest thing I have ever dealt with to date. When someone tells you that your daughter has fluid on her brain and all you see is fluid in the ultrasound room (no brain), it is overwhelming. I am not sure I have cried that hard before. I had no idea what to expect. I had never heard of hydrocephalus and what the outcome for our little girl was going to be. So, I went home that night and Googled her diagnosis. Bad move. I was truly balling my eyes out at this point. I closed the computer and decided no more of that. This was also the night that Tyler fell out of his bed. Weird, huh? He had been in his big boy bed for months now, and he picked that night to roll right out. I crawled in bed with him, and softly cried myself to sleep while oddly feeling secure in the warmth of my two year old son.

I woke up the next morning still in tears and tried to hold myself together. After a day or so of just pure confusion and pain, I received a card from some very special people. After reading that card, I realized that no matter how many tears I cried, no matter how many documents I read on possible scenerios for Ava, no matter what, Ava's fate was in God's hands. I had to now rely on my faith. This is something I had never really done before, but I just knew that this was the way I was going to get through it. So, that day after praying hard, I took a deep breath and said that I have to be strong and take what is given. After that, what few tears came every now and then were not so big and not so painful. And anytime I started to get upset, I went back, read that card, and I took a deep breath. It it His will, and it is out of my hands. I just had to keep remembering that.

I still have this card that was given to me. My goal is to have someone copy the front onto a canvas and hang above Ava's crib. These words, very simple might I add, stopped me in my tracks and brought me to a place that I had not yet experienced.

So sorry I have not been up to date! The family went to Disney World two weeks ago with my parents and my brother's family, and we all had a blast! Tyler even went up and hugged all the characters (if you didn't hear, he ended up on his stomach crying when we went to see Santa...not good). The weather was amazing, and the crowds were very small, so we couldn't ask for a better trip. I hope to have a link to some pictures here soon....once I figure out how to do that:)

Ava is trugging along and doing fantastic. We go for a hearing test on Monday which I believe is just protocol. That is one thing that I am really not worried about as she reacts to people's voices, sounds and her brother's lovely temper tantrums. I am looking to possibly get a 2nd opinion on her vision because I am just not sure I can wait a year to find out what all is going on. The ophthalmologist that we have been seeing here at MUSC says that he doesn't need to see her for a year or so to do a follow up. That may be the case, but I just have a hard time with that. So, I figure someone else can either confirm that and ease my mind or tell me otherwise. It can't hurt, right?

I have met many people online many of them with truly amazing stories. This one gentleman from Canada has lived with hydrocephalus since he was born...48 years now...WOW. His last shunt that he had placed was 24 years ago, and it is still going strong! While that gives me great hope, he also elaborates on the headaches and such that accompany this condition. He sent me a scale that another man made up, and this guy says that he is right on target. It is a scale of 1 to 10, and I think on level 4 or so he is getting sick from the pain. This tugs at my heart that my baby girl may and will likely experience this. I know it could be much, much worse, but no one wants to hear those kind of stories. But he also has very positive and fun facts that he shares like people with hydrocephalus are walking barometers. Yes, the pressure from the atmosphere affects people with hydrocephalus. I have heard that many get headaches when a front is coming. Kinda funny in its own little way. Maybe Ava can grow up and be the first accurate weather person!

Today was our first physical therapy session, and it went pretty well. Ava was very cooperative which just amazes me. The lady comes in, strips the poor child down to her diaper and proceeds to mess with her hands, feet, head, etc. She flops her on her side, tummy, back and if she could have she probably would have hung her upside down! And Ava just smiled at her and cooed away. It was too cute! Don't get me wrong, I am very thankful that the therapist was here, and I believe she did a wonderful job working with her and testing her strength.
Ava has hypertonia which is increased muscle tone. This is usually seen the opposite way as in low muscle tone, so the therapist was watching her extra closely. All of the "red flags" that she was looking for Ava did not have. Whew! She still needs the therapy, but her situation could have been much, much worse. I will take that as good news and run with it!
Her neuro check up was yesterday, and her head circumference is right on track with a normal baby. Actually, it is perfect; riding right along the 50th percentile. So, the shunt is set at the correct pressure. Her height shot up to the point where the neuro took a double take at the chart. She is excelling at something:)
 I will take this week as progress in the right direction!

Well, I believe it was meant to be. I have verbally accepted the role of leading up the chapter for the South Carolina for th ePediatric Hydrocephalus Foundation, Inc (PHF for short). I don't think I have been excited about like this in a very long time! I keep checking my email hourly waiting on the next step....even though it is the weekend and no one is really working:) That just shows you how I feel about this. So, the website is http://www.phfkids.org/. Check it out and read what the Illions have started and conquered so far. I can't wait to be a part of this and see what awareness I can bring and what funds I can contribute to finding a cure or at least a more reliable way to live with this lifelong condition.

Now to the family, everyone is doing well! I believe that Ava was intently watching me eat my waffle this morning....GREAT SIGN! Looks like we may be on track to start cereal in the next few weeks! She also loves to smile and talk. She is definitely the social butterfly of the family and will make a great spokesperson for her cause:) We have a neuro follow up tomorrow, we start the physical therapy process and Wednesday and we switch Early Intervention specialists in the next couple of weeks so that she can receive vision therapy as well. So far so great! Thank you Lord for all that you have given us and her!

For Tyler, he is welll.....a 2 year old. We are trying to get through the "temper tantrum" phase before I completely lose my mind. Other than that, he is smart, energetic and a fantastic big brother. We are taking him to see Mickey Mouse next week which is his FAVORITE cartoon. The only one he will really sit and watch. I am curious if he will actually go near Mickey or not since he has Michael's fear of characters (including Santa - that was a disaster!). I will definitely get lots of pictures!

As always, thanks for keeping up with the Pierce's, and thanks for the prayers. I will be in touch soon with more information on my new undertaking and on Ava's appointments.