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Wednesday, June 27, 2012

A Dip Before Bed

I don't know what it's like where you live, but it's HOT here in west TN. It's ridiculously hot. We haven't been playing outside during the day very much the past week or so because frankly I just don't have the energy to keep layering on the sunscreen and make sure we all stay adequately hydrated. So Sullivan's awesome pirate ship pool has been a bit lonely to say the least. We did let him get in the other night and swim though and that was a hit.

Friday, June 22, 2012

While Daddy was Away

Matthew left Sunday night to help chaperon our church's youth trip to Panama City Beach.

I don't mind being alone, but I was worried that S wouldn't go to bed as well as he usually does. Normally Matthew is the bedtime guru. I'm happy to report that Sullivan slept just as well as always. We're so blessed by how well of a sleeper he has always been. Matthew was really busy on the trip so we didn't get to talk very much. When I was pregnant I set a goal to take at least one picture of Sullivan every day for the first year of his life. I reached that goal and so now I've set out to do it again for year no. 2. That being said, the pictures aren't always amazing, but it makes for an easy way for Daddy to play catch up on our week!

We saw Safari Greg at the library. It was VERY crowded so I'm not sure how much Sullivan actually saw but he enjoyed himself. He laughed along with everyone and started random games of peekaboo with people around us.

We didn't stay the whole time, but still ended up seeing a snake, tortoise, and a Cayman which is a cousin of the crocodile. You learn something new every day!

We stopped by the Farmer's Market on our way home and Sullivan once again started random games of peekaboo with the farmers. It was actually really adorable to watch these old rugged men join in S's game. My BFF Whitney is in town from east TN and she came over and we talked for awhile after S went to bed.

Sullivan went to daycare today and I went to Jackson to run some errands. I got a text from Julie with this picture and a message telling me that Sullivan was entertaining all the big kids on the playground with peekaboo.

My child is all of a sudden a peekaboo-aholic. After my errands I met my friend Sunni for lunch and got a super bad sunburn. Yep, just from sitting outside having lunch. I don't usually burn like that so I don't know what's up, but it hurts! We had dinner at my Mom and Dad's and went to bed early.

Wednesday morning I had an appointment with a new doctor and had tons of blood work done. The lab wasn't sure if they should take all that was ordered at one time or have me come back another day, but I had already arranged for my mom to keep S so I told them to go ahead and do it all. Surprisingly I felt absolutely fine. We had lunch and then headed to Paris for PT and ST as usual. Sullivan did good. Holly worked with him today instead of Shani and I was so proud when he crawled right to Holly and let her pick him up when we got there. No shyness this time!

I started feeling really tired during therapy and mom ended up having to drive us back home. We grabbed a snack and then headed to church. It was ice cream sundae night in my class and the kids loved it!

Dinner was at the golden arches as usual with Mandy. S wasn't on his usual good behavior though.. it took alot to keep him entertained thru dinner.

Sullivan went to daycare again today. This was the first time he's ever gone twice in one week, but I had a few appointments and I ended up needing some rest anyway. I still wasn't feeling 100%; although, I'm not sure whether to blame it on the sunburn, the usual ailments, or the blood work from the day before. After picking him up we headed straight to dinner with my mom and brother- we crashed their usual date night at La Canasta. S was once again not his usual self. I'm not sure if he was just super tired from daycare or what. He ate a good dinner though- 2 Plum squeezers, a string cheese, a chicken soft taco, and some apple cinnamon crunchy things my mom bought him. The kid likes to eat! When we got home we played outside for a bit and he helped me prune my willow tree and clip some flowers for the table. 

He played in the bath for over 30 minutes tonight and went to bed a little early. I think this week has worn him out.

On Friday morning Whitney and Dexter came over again and we made watermelon cookies. We played outside for awhile and attempted sidewalk chalk again. Sullivan did better about actually coloring with it this time although he also decided that it was super tasty. 

Crawling on the concrete is tough on little toes and so we took a cookie break. 

Then it was time to go get Daddy!

Watermelon Cookies

My best friend Whitney lives in East Tennessee now and I miss her terribly. She's in town this week so we got together to make cookies and talk this morning. Her husband Dexter entertained S so we could visit which was great. I didn't have enough chocolate chips so we had to rethink our original cookie plans. We looked thru my cabinets and decided to Google "cake mix jello cookies" and found this recipe. We had a white cake mix, watermelon jello, and a handful of chocolate chips and decided to make watermelon cookies! They turned out pretty good! They kind of taste like a watermelon Jolly Rancher candy only in cookie form. 

Watermelon Cookies
1 white cake mix
1 box watermelon jello
2 eggs
1/2 cup oil
*Chocolate chips optional

Blend all ingredients together with a wooden spoon.
Dish onto cookie sheet lined with parchment. 
Bake at 350 for 9-10 minutes.
Cool 1 minute before removing to rack.

Some have semi sweet chips, some have white chocolate chips, and some are plain. The white chocolate and the plain are my favorite. I plan on trying out different flavors as S gets older.

I think he will enjoy all the different flavored cookies as much as he likes these! 

*Side note, my picture of the cookies didn't turn out half bad; I'm learning!

Our Little Hero

Remember the extended trip to Nashville we took a month or so ago? Now that I have our images I can blog about Sullivan's Inspiration Through Art little hero session! I learned of Inspiration Through Art earlier this year from a fellow cranio mom. I was hesitant to apply at first, but decided that Sullivan deserved a shot. He was accepted immediately and I started looking through the lengthy list of photographers. Karen Halbert's profile stood out and I emailed her a few days later. As we emailed back and forth, we realized that we had a common bond. Karen's friends had adopted a child with cranio and he was also in Dr. Kelly's care! Not only that.. but our session was scheduled to be held at their Brentwood farmhouse. Sometimes I just have to smile up at the sky when things like this happen. After visiting a bit that afternoon, Karen captured some of the most beautiful images of our family. When I first saw them I cried. I feel like this photoshoot was truly a celebration of all Sullivan has overcome. So many unknowns about his future and he started crawling a week before these pictures were taken! God is so good. They capture our joy and Sullivan's personality so perfectly. These are some of my favorites...

We could not have asked for a better experience or better photographer. Thank you so much, Karen, for these beautiful images! We are over the moon in love with them!

Thursday, June 21, 2012

I Know a Super Mom

I've mentioned before about enjoying my role as a mentor for new cranio moms. What is really rewarding is when I can meet another cranio family whose child also has epilepsy and I can help them in some way. Seizures can be a side effect of craniosynostosis or they can just be a coincidence. While I would have never  hoped to be in either club I have met some of the most wonderful, amazing, and strong people along the way and I'm proud to be in their company.

Yesterday, my friend and fellow cranio mom, Kathy, ran the entire length of her son's surgery. She talked to the hospital ahead of time and arranged to have access to a treadmill at the hospital for as long as she needed to run the whole time her son Emmett was in surgery. His particular surgery was expected to take 8 hours. She felt that if he could go through so much she could run for him. She set up an event on facebook called Emmett's Virtual Endurance Event and asked everyone to print off the racing bib, wear it the day of Emmett's surgery while doing some kind of movement, and to take a picture for his scrapbook. Sullivan wouldn't keep his on very well but we did wear ours while playing ball outside and I pinned mine to my purse for the rest of the day.

Kathy ran for 7 hours 26 min. She made it the entire length of Emmett's surgery! She ran 36.2 miles and averaged a 12.19 pace. She's amazing! She's my inspiration for mind over matter. Several people joined her in her run at the hospital.. a few people they didn't even know joined in after learning about Emmett's surgery and the Endurance Event! Emmett's event even caught the attention of several news stations. Kathy raised a lot of awareness about cranio and is a true blessing to our community!

Tuesday, June 19, 2012

Thinking of Holland

It's been a little over a year since we brought our little boy home from the Vanderbilt NICU. I've tried a couple of times to type out his birth story, but I've decided I'm just not ready to go back to that place right now. Life is good, and for the first time in many many months the great days are outnumbering the scary days. It's a wonderful feeling. Sullivan has been doing so many amazing things in the last month. Every now and then I even let myself forget about all he's been thru and all we've been thru as a family and just live. When Sullivan was 6 months old a friend told me something that truly encompasses where we are right now. She said, "Rachel, it gets better. Right now it seems like you're living appointment to appointment, but one day you won't. You'll just live." Right now I feel like we're living. 

From the beginning of our journey, I told God that I knew His plan for Sullivan had to be amazingly big and that I would do my best to be open to where He led us. I've met many many people because of Sullivan's epilepsy and even more because of his craniosynostosis. Several of these people have become forever friends. I've mentored a few moms thru their babies surgeries and recently a fellow cranio mom and I started a facebook page to support Vandy Cranio Moms. It seems like such a small thing, but I've been that mom reaching out and starving for information about what's happening to my child. I know how many questions run thru your head and I can nod knowingly when they say they haven't slept since their child was diagnosed. Our group is growing every day and moms who just a few days ago had no one to turn to now have several veteran moms in their corner. It's a good feeling to know you're there for someone who really needs you. 

Is everything sunshine and roses? No. But we're making the best of it. Do I hate that my child has challenges? Yes. Do I wish everything about the last year could have been completely different? That question is much harder to answer. Lately I've been praying for God to show me the next direction I'm suppose to go with Sullivan's journey. We've tossed around the idea of a foundation but we can't decide if it would be for cranio or epilepsy or both. We know that we want to continue supporting the patient families of the Vandy NICU with our monthly snack and Kleenex drop offs, but we also know we want to do more. A few days ago during my quiet time I told God that I was going to quiet my mind on the topic and wait for him to show me where to go next. Sunday night Matthew left to chaperon our church's youth trip to Panama City. As we pulled into the parking lot I immediately noticed the U-Haul and knew I had to take a picture of Sullivan with the artwork. Shortly after Sullivan was diagnosed with cranio, a close friend sent me a facebook message containing just this poem. I've read it many times since, and still can't read it without choking up a bit. I knew this was God letting me know that He was hearing my prayers.


by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Monday, June 18, 2012

Fun at Paw Paw & Gran's

Matthew's dad likes to go to auctions and every now and then he comes home with a present for the grand kids. The little red car is currently one of Sullivan's favorite toys. These pictures are from Zachary's birthday.. which was over a week ago (I've been really behind on posting lately). They make me smile. 

Sullivan was so excited when he saw the car for the first time.

Comparing rides with his Unc.

We took turns pushing him up and down the street, but Lily wanted a turn, too.

Which of course led to wheelies, but he didn't seem to mind.

Gran tried to show her how to push him around in a big circle, but that never quite happened.

She's always on the move so it's really hard to get good pictures of Lily. She's also gotten into the habit of "cheese pretty pleasing" for the camera which leads to pictures like this...

So I'm getting better about asking her to look at something instead of me to get more genuine photos of her. It's a work in progress but I like these...

Sullivan enjoyed watching Lily take a turn in the red car, too, and waited patiently. He enjoyed picking grass and waving at passing traffic. He's such a friendly little person. Even with his recent spurts of shyness he's still very outgoing.

Then Lily decided to join Sullivan in the interesting grass and there was much silliness. 

This was them tickling...goobers.

Lily took this one of S and Gran.

And Matthew took a few of everyone just hanging out. 

Of course all good sharing must come to an end. For now we've figured out that Lily can fit in the truck and they're both perfectly content to be pulled around backwards. (Side note: I was reluctant to post this picture of myself because frankly I look like a huge hot mess. While my thyroid levels are finally back to normal, my body is still holding on to all that weight I gained when my thyroid went wacky. I've lost 13lbs so far and I feel better.. I just wish I looked better. It's going to be a long process but one day I will get back to a good for me weight. In the meantime I've made a promise to myself that I WILL have pictures of me and my child together. He's only this age for this time regardless of how I look.)

I love them so much!