A little progress

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!

Ava's MRI scan

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!

Trip to Biltmore

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.

Photos of April

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:)


I really need to get on more!

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).

my new obsession

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!

A couple of photos...

Ava eating cereal for the 1st time

Tyler at Charlestowne Landing