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Tuesday, August 14, 2012

Surgery it is.

For the fastest updates on our life at the moment please visit:

Sullivan's second skull reconstruction surgery is scheduled for this Thursday, 8/16/12 at 7:30am. Please keep us in your prayers.

Friday, August 3, 2012

Word Up! S turns 14 months

Today Sullivan is 14 months old and I refuse to believe it. Time just moves so quickly. Right now everything is so dramatic with Sullivan. He's happy and then it's the end of the world. Somehow it's the end of the world about every 5 minutes. Tears and tantrums are our life right now. But in between all of that there are wonderful moments. Like when he's talking or walking with his walker. When he's laughing so hard that his eyes disappear or when he's giving his infamous bear hugs. He loves swimming, playing with friends, dancing, and being outside. Sullivan also loves watching PBS. He loves pretty much every show which is nice because no matter when I need to turn it on, he'll be happy. His favorites right now are Barney and The Electric Company, which is way above his level but he likes all of the music they play and will dance while playing with his toys. It's super cute. I'm amazed at all the words he says right now.

Thank You
What's that?
What's this?
Uh oh
Got it
It tickles
Paw Paw

He'll also parrot different names, but doesn't say them regularly. He's said Kaegen and EmilyGrace.. probably a few more that I can't remember. It always catches me off guard. We've had alot of fun watching the Olympics this week I'm surprised by how into the swimming and gymnastics I've been. Matthew thinks it's hilarious how much I've yelled at the TV. I'll be sad when they're over.

S hasn't felt well the last few days; I think we're battling yet another round of the stomach virus. I wish it would leave us alone- for real. We went for a walk this afternoon to get some fresh air. S has been enjoying his wagon rides.

And when we got home there was a surprise on our doorstep- a farm! 

I posted on Facebook a few days ago asking if anyone had any farm animals that they didn't want anymore. I got some pretty cute responses. Apparently it wasn't a given that I wanted PLASTIC farm animals. A friend contacted me a few days later though and said she had found me a farm and a few animals and that they were free. Score! He loves it.

He's been showing me the animals and telling me the ones that he knows and asking me the ones he doesn't. He's a little obsessed with sorting them though. For whatever reason they must all be piled in this one area of the barn.

OCD much, son?

Thursday, August 2, 2012

Waiting for the Phone to Ring

There's not much going on around here these days, just the norm. Sullivan is talking like crazy. Some days I wonder if all this speech therapy was such a good idea! I'm joking of course. S has actually been discharged from speech with Ms. Jan. He still has speech with TEIS but Jan felt that he was doing great and that we just didn't need her anymore. I agree that he's doing well, but at the same times it scares me to drop therapies. It's all we've ever known.

We saw Dr. Kelly this week. It was a very quick appointment. He felt S's noggin and agreed that it was too narrow. He ordered a CT and we're currently waiting on insurance to approve it. They were supposed to have approved it by now so I called and check on the status of things today and was told not to expect a call until at least Friday. More waiting. It's hard wondering whether your child will have another massively invasive surgery. I actually think the waiting is harder the second time around. That's the nature of the cranio beast though. It never ends. His head will change until he's in his teens for better or worse and it's just something we'll have to deal with. Compounded on that is the likelihood of him having a fill-in surgery. The chances of that are much higher if we have another CVR. That's a hard reality; it's especially hard for my mom.

We've been enjoying more time outside these days since it's not quiet as hot in the evenings. Our next door neighbors have a new husky named Lola, and S likes to visit her. She's very much a hyper puppy and he thinks that's hilarious.

I can always tell when I'm more stressed out because I take fewer pictures. I hate that about myself. It's not like we're not still living and doing fun things. We're still going to the pool, and to church, and making neat things. I've been spending tons of time with my cranio support group moms (online of course), and much of my time the past week has been spent making a flyer for Vandy to pass out to new patient families. I'm pretty proud of how it turned out. 

My Photoshop was so rusty, but I'm thrilled that the moms in our group loved it and even more thrilled that Dr. Kelly's office, the PICU nurses, and the child life specialists have agreed to hand them out! Abby and I are loving how much our group has grown in just a short amount of time. We have 21 families now! Our hope is that between all of the different areas handing them out that we will reach all of Dr. Kelly's cranio patients and their families. If I can find any reason for all of S's cranio battles I suppose it's this. We're helping others, baby.

*Update! Our CT scan is scheduled for next Thursday. We'll meet with Dr. Kelly the following Monday to get the results.

Friday, July 27, 2012


So today marks 1 week since I stopped sleeping. I feel like utter poo but I did get my office semi cleaned out today so hooray! It's really hard on everyone when I get like this.. I just wish I could shut my mind off and sleep. Ambian is looking super good right about now. Might be time to talk to my doctor.

Wednesday, July 25, 2012


Today I had one of "those" kids.. you know the ones. By the time church started I was happy to drop him off in the nursery and go to my class. I thought I was going to lose my mind. The whining and the tantrums are increasing and it terrifies me. Holly and Jan could barely work with him in therapy today and I just didn't even know what to do. When he gets going there is no making him happy; HE has to decide when he's done. I don't know if he's just being a 13 month old or if the pressure is back. He was 5 1/2 months old when he had surgery and while that was 8 months ago I still clearly remember what life was like then, and it wasn't sunshine and roses. Monday's appointment with Dr. Kelly can't come soon enough for me.

I feel like as the day progressed I just got more and more irritated. I wasn't irritated at anything in particular, just everything. I'm going to have to apologize to the poor girl at McDonald's the next time we're in there because I wasn't very nice when we were ordering. Why is it that they change their menu every week anyway?! When we got home from church I just started cleaning. I clean when I'm stressed out or when I'm angry. I scrubbed the whole bathroom, cleaned the kitchen, washed a load of laundry, and mopped 3 rooms before I finally decided I was calm enough to sit and get lost in the computer for a bit. I feel like there are so many things bugging me right now so I'm going to do something crazy and just list them:

1. Having to start over on my Metformin regimen and deal with side effects again.
2. Sullivan's medical problems and not knowing how to help him.
3. Matthew's schoolwork and the time it takes away from our family.
4. Trying to figure out how we're going to pay our bills.
5. Having my parenting judged by people who have no idea what it's like to parent a child with special needs.
6. Matthew's unemployment.
7. Being so physically tired.

And since I'm in a listing mood, here are an equal number of things that I'm thankful for:

1. That I've lost 27lbs in the last couple of months.
2. That Sullivan has great doctors and therapists who push him and want the best for him.
3. That the seizures are quiet.
4. That Matthew is graduating this Fall (Lord-willing!).
5. That I now have a part time job.
6. That we have each other and a roof over our heads.
7. That God hears our hearts and answers our prayers.

Tuesday, July 24, 2012

Body Parts

It's been lively around here the last week or so. Sullivan fell and banged his head last Thursday and has possibly damaged one of the plates. So we're off to see Dr. Kelly next Monday to check things out. When I talked to Dr. Kelly he was actually less worried about the plate and more worried that the back of Sullivan's head has narrowed to about how it was pre-surgery.

If it hasn't refused we might be looking at a helmet or a wait and see approach.. if it's refused we'll be looking at another CVR. We've all had a nice short round of the stomach virus that's going around our town, too, which was especially wonderful.

In other news Sullivan can and will now show us where his belly is!

He's very proud of himself. He's also figured out the sign for "more" but would still rather whine to get what he wants. Sadly I usually give in because in all honesty he's a pretty whiny kid and he wears me down faster these days because of the stress from his noggin.

Wednesday, July 18, 2012

Sensory Play

It's still in the high 90s here and it's really just too miserable to play outside during the day. Last week our church had VBS; I made several different sensory activities for my preschool craft class so I decided to pull them out for Sullivan today. This morning we played in the cereal sensory box. I loaded it up with familiar toys this time but next time I bring it out I'm thinking items from the kitchen (spoons, a bowl, cookie cutters, etc). S liked the box alot. He would get handfuls of the cereal and drop them back in the box or throw them up in the air. He liked finding all of his toys and examining them.

He played in the box for almost an hour which makes it gold in this house. I didn't even care that he made a mess because really it wasn't that bad. 

It's unsweetened cereal so it isn't sticky at all so clean up wasn't too big of a deal. The cereal is pretty easy to scoop up and was put back in the box for next time.

This afternoon's activity was play dough. I made tons of play dough last week for VBS and it was a huge hit. Lots of people have asked for the recipe; I got it here. Sullivan's PT & ST team teach to get the most cooperation out of him so I thought I would pull from their bag of tricks and try a little of the same. I put the play dough on the top of his wooden toy box so he would have to pull up and stay standing to play. He did great! 

Sullivan liked picking off little pieces of play dough and making his hand print. He started making impressions in the play dough with the bowl so I got out some cookie cutters. The only plastic cutters that I have are Easter themed.. I might need to work on my collection. 

He played for it for quite a while before sampling a bite. I don't think it was very tasty.

All in all a pretty great day at home.

Monday, July 16, 2012

Waving From the Station

I've come to realize that I have several pregnant friends, and by several I mean more than 10. I also have several friends trying to get pregnant, and by several I mean more than 5.. and those are the ones that I know of. One of my close friends announced her pregnancy recently and I didn't even make it in and out of church that morning before the questions and comments from people started: "When are you going to jump on the baby train, Rachel?" "When are you guys wanting another baby?" "Remember not to drink the water..." ... you get the idea. Surprisingly I get these questions alot, too much if you ask me considering Sullivan is only 13 months old. But here's my short and simple answer...

I'm perfectly content with this little man right here.

"But, Rachel," you say.. "it's unfair to him to be all alone! He'd be much happier with a sibling! Don't you want a little girl?!"

Those are not valid enough reasons, for us, to have another child. I'm not saying we don't ever want another child... I'm just certain that, Lord willing, another child won't come out of this body. My body hated being pregnant, and it almost killed me. Much to everyone's surprise our reasoning for not wanting another child right now has nothing to do with Sullivan's medical problems, and everything to do with mine.

Matthew and I also feel like we want to fully enjoy Sullivan's childhood, and that's another reason we're not even considering another child until Sullivan is in school.

So hop on that baby train, ladies and ENJOY it. If you're happy, I'm happy for you! Just know that I am just as happy waving at you from the station.

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!