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

So, I have actually been productive in working on foundation stuff lately. I called Wild Wing Cafe (at Oakland in Mt. Pleasant) recently to see if they did any type of fundraising. It was meant to be. I got the most wonderful manager on the phone who was truly interested in my cause, and he agreed to make Wednesdays "Spirit Night" for the Pediatric Hydrocephalus Foundation in the month of July. This means that he will donate 20% of their sales EACH WEDNESDAY for the whole month of July. That is awesome!! I am so excited that this will be my first fundraiser for the foundation. Once I get this under my belt, I will be ready to take on another one:)
I am also planning on traveling in September to DC. The founders of the foundation are very big into trying to get more funding and research done by the government, and they really hit Washington hard and frequently working to get support from congress. They were able to get a Caucus started last year, and they were also successful in getting the month of September to be Hydrocephalus Awareness Month. This September they have been granted access to speak on behalf of the PHF in front of Congress to try and get more funding and support. They are doing a phenomenal job up there, and my goal is to go help support by standing behind them when they speak.

So, this is what I have been up to. Now, the kids. Ava is doing really well. She is starting to sit on her own, but she still loses her balance quite a bit. She isn't ready to be without a spotter....yet. Anytime now, though:) She is also doing extremely well with her left hand. She wasn't opening it much, and she used to keep her thumb tucked in, but now it looks normal! Well, just about. She still turns her hand outward some, so that is what we will work on next.
Tyler is just great! I can't remember if I have updated you on potty training, but he is fully done. At night time and all! He has been this way for months now. It has been a blessing that he was so easy to work with! But the fun starts now. He uses it against me. For example, last night at bedtime he uses the potty and brushes his teeth. Then, I tuck him in, and I put a gate at the door (yes, I contain him in his room). Five minutes later he needs to go poop, then pee, and finally he is thirsty. After weeks of tending to his demands (the potty ones), I decided to put my foot down. So, last night he proceeds to push every little drop of pee he can muster out of his little bladder into his "underpants." (which was not a lot by the way - he had just peed!). So, he is learning to use it as a tactic to get out of bedtime. Ah, what fun. But I still love that little munchkin...more than he will ever know. Even if sometimes I wish he had an OFF button.
My beautiful kids!!! I didn't know you could love something so much!

So, Ava had her MRI yesterday. She actually did pretty well....better than I did. We went back there and laid her on the table. The anesthesiologist was the one who did her shunt surgery, and he was thrilled to be doing her minor procedure then. (off the topic, I just have to say that the anesthesia team, both pediatric and adult- for my c-section, were absolutely phenomenal!) He placed the little mask over her mouth while she was smiling at the nurse and munching on her pacifier, and she was fast asleep within a matter of about 45 seconds. I got freaked out, though, because her eyes were still open. She looked drunk. Very weird. Did not like that at all, but I knew she was in great hands. Needless to say, cry baby me walked out into the waiting room a mess. It never fails.

She woke up quite groggy. Miss "I eat everything you give me" was refusing to eat and could not be consoled. I began to get upset while trying to calm her because she had never truly cried like that before. I quickly pulled it together remembering that she can feed off of my tension and anxiety, and within minutes she quieted down. After about 20 minutes or so, she was back to her happy, reserved self!

So, the MRI results. They were great. They weren't perfect, but I will take a report like that any day in comparison to what we could have seen. Her ventricles are almost back to normal (they were more than half the size of her head filled with fluid when she was born). I have to go back to get a copy of the MRI results, and I will try to get before and after pics up soon. Everything was there which is great news. There is a small "blob" (have no idea what the long term was that the doctor used) in the center of her brain that shows scar tissue. This is permanent and is mainly on the right side of her brain. This part of the brain typically is responsible for your gross motor skills (crawling, rolling, walking, etc), and the right part of the brain controls the left side of your body. So, with this said this will explain why she favors her right side more and why she is a bit delayed in her gross motor skills (she just started really rolling at 6 months rather than 4). The bad news on this is that the scar tissue is permanent and cannot be repaired. The good news is that her brain is still developing and has plenty of time and ability to learn all the necessary skills that she will need in life. And the fact that she uses her left side and just chooses not to most of the time is a great sign. This means even more that she has the ability to do it all.

Finally, the neurosurgeon turned her shunt up. This is good. The higher the shunt setting, the more the brain is doing of taking care of the CSF fluid and relying less on the valve. So, her brain is starting to filter the fluid where it needs to go. His goal is to see if we can continue to turn it up over time to see if she can become even more less dependent on it. THIS IS FANTASTIC NEWS! In my opinion, it doesn't get any better than this. Thank you, Lord, for answering my millions of prayers that I have said over this child!

So, everything is back to normal here. We will continue to do therapies with Ava so that she can beat that scar tissue in the rear:) As for Tyler, well, I am taking him to the park today. He gets to run through water spouts and such, so he is just about as giddy as they get. I love that kid! I will try to take some pictures of our outing. But first, I have to go clean up his attempt at eating cereal. He got the cereal in his mouth, but wasn't so successful on the milk.

Thank you again for all of your love, support and prayers!

So, Michael has been asking for some time now to get away. Ideally, he would have preferred a cruise or something along that line, but he knew that I would not be way from my children that long:) So, he settled for a weekend trip to the mountains.

We went a couple of weeks ago and actually had a relaxing, fun time. Not to say that I didn't think that would happen, but put it this way: he was making bets that I would make him turn around by Orangeburg to go get the kids. He lost that bet though. And the tip couldn't have come at more perfect timing. I was starting to get swallowed in Ava's situation, and I was really beginning to stress and worry again as some little newer issues were brought to our attention earlier in the week. I was hesitant on leaving her and Tyler, but I knew I needed to regroup. And that I did.

We left on a Friday morning and spent a day and a half at the Biltmore in Asheville. I should clarify that we did not stay at the Biltmore as we would have had to pawn one of the children for that stay. We then drove some of the Blue Ridge Parkway to Mount Mitchell which is the highest point east of the Misissippi. At least that is what the sign said. We also ate at a nice restaurant that was recommended by our neighbors, Tupelo Honey. If anyone is in Asheville, breakfast and dinner were excellent there! Yep, we ate there twice.

So, in all we had a wonderful and relaxing time. If you have never been to the Biltmore, I highly recommend a trip. Here is a link to a few photos we took as well as a few random pictures that I forgot to add to the last post.
https://picasaweb.google.com/bluemarlin325/MoreAprilPhotos?authkey=Gv1sRgCNr11-ulleyDwQE&feat=directlink

I am taking an awful long time this evening trying to figure out this darn stuff! Anyway, here are some photos of Easter and a trip to the zoo. I will get some more links up soon. Thanks for being patient:)

https://picasaweb.google.com/bluemarlin325/DropBox?authkey=Gv1sRgCIufr7-6kbjYLA&feat=directlink

Wow. I just looked at my last post date and realized that it was a month ago! Gosh, where does time go?! So, as I have promised over and over again I will do my best to post more. My goal is at least weekly....we will see how that goes:)

I am trying to get up a link to where I can share all of these great photos I have. My photo sizes are large, so it is taking forever. but I hope to have some up for you to see in the next day or so. I would say this afternoon, but I am taking Tyler for his swim lesson. I am trying to see if I can scar him for life. Well, the other moms in the pool area probably think so since my little guy cried the entire 30 minute lesson last week. Yep, the instructor said "Is this Tyler?" I said yes, and she grabbed him up and told me to be back in 30 minutes. Well, no mom just walks out, so I went and filled out my paperwork out at the front desk then came back in (but I stood out of Tyler's sight). I saw him crying and flipping out every time she turned him on his back. He would yell "Get out! Pees. Get Out!" I was so hurt, but I let it continue. Then, at the end he got out and calmed down. After I warmed him up and got control again, I asked him if he wanted to come back next week, and he said yes. So, I am going to torture him again at his choice, of course. I will keep you posted on how this afternoon goes.

As for Ava, well she is just amazing. I will come back to give you a more detailed update, but she is a hoot. She had the giggles last night. Everything I did she just had the gut wrenching laugh like it was the funniest thing she had ever seen! It brought tears to my eyes to see how happy and giddy she was. I really need a video camera. Maybe I can talk Michael into splurging...hehe. Ava is going for her 1st MRI since birth next Thursday. They will have to sedate her and also intubate her, so I am a little (maybe more than a little!) nervous about this. But I am also extremely curious to see what her brain looks like now that the fluid is under control. Her first MRI showed nothing but black with thin, thin lines in the middle and the edges of brain. I cannot describe my thoughts on that first MRI, but as Ava can prove the brain is an unpredictable and amazing organ. I will work on getting a before and after pic if I can figure out how. Don't hold your breath though.

I will be back soon with photos and more updates of my first support group meeting I hosted as well as whatever else I can muster up to remember (which isn't much these days).

So, I have been busy lately doing so much including setting up South Carolina's 1st pediatric hydrocephalus support group meeting, taking two classes in school, raising two kids (of course, duh) and juggling doctor appts/therapy sessions/etc. But in the meantime, I have found a new love. My new obsession.
It's called wrapping. With two kids now, grocery store trips and quick runs to stores and such do not constitute lugging my 200lb (that is what it feels like) double jogging stroller for the simplest of things. So, I bought a carrier. I used it at Disney and while it was nice and convenient, it wasn't the most comfortable. So, impatient me started a new journey.....I bought a wrap. It is a 15ft piece of fabric that I tie around Ava and me so that she can hang out on my back or sleep on my chest. I can grocery shop with two hands, go shopping with one stroller (definitely not letting Tyler run wild just yet) and carry her around while at the park and such. It is time consuming to tie and learn, but it is the best thing ever! And there are so many wraps to choose from.....and I want them all. Or maybe just a handful....hehe. So, I just wanted to share this because I have never enjoyed something so much and wish that I would have known about this with Tyler. It is the most comfortable, cuddly, secure, motherly thing that is out there. (sorry about the lighting. The wrap is much prettier and brighter than this)
Thanks for listening to me rave about my new obsession. If for some reason Michael starts acting like he's broke and needs to start selling a car or an organ, I had nothing to do with it!

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.

Since having Ava, I started school back yesterday. I should say that I started going back to classes and not just online. Many people came up and asked me how the new baby was doing. I told them that she was doing fantastic and was already 3 months old, and I was just loving life. Everything was good.

As I was riding home last night (in my nice and quiet car with no kids), a thought crossed my mind. This thought comes very frequently; almost daily. What if I had lost her? Could you imagine having to answer those questions when coming back to school? This thought comes and goes because I know of a friend of a friend who lost their newborn in November due to a rare infection. How does she do it? I pray quite regularly for that couple and ask God to ease their pain and help them through this horrible time, but I never really stopped and thought of how hard it really must be for them. This opened my eyes. Very wide.

So, I write this morning to thank God for blessing me with my children no matter what obstacles are given to us. I thank Him for giving me Ava and taking care of her. It may be harder and more stressful with her situation, but it could definitely have gone another way. Thank you. And thank you all for your prayers, thoughts and support. Without friends and family, life would be a hundred times more difficult. Probably impossible.