Little Prayer Warrior...

One of Noah's favorite things to do is pray. He reminds us at every meal time that we need to pray (even if everyone isn't sitting at the table). Two Sunday's ago, Dennis issued us the 20/10 challenge. We decided to include Noah in on the challenge since he likes to pray so much, but instead of doing all 20 at a time, we only do a few at each meal. Here's a little sampling of Noah praying at dinner time.

Daddy's Home...

I don't know who's happier that Ryan's home- Juliana, or the dogs.

Poor Juliana, though, she didn't really stand a chance in the end.

Physical Therapy...

Here's a little snippet of today's therapy session with Juliana and Miss Meghan (her physical therapist). Yes, she is wearing 1 lb weights (we call them pretty bracelets) on her ankles.

Pretty cool, huh? Thank you, Jesus!

Forgot My Filter Today...

An unfortunate side effect of my brain injury is that I tend to blurt the first thing that comes to my mind instead of thinking before I speak. The first years after my brain injury, this got me into a lot of hot water. Since then, I've learned to adapt and manage my injury and most people who meet me now don't even know that I've had a traumatic brain injury, which is how I prefer it anyway.

Every now and then I slip up. I leave my filter/coping mechanism at home, or I "lose it" temporarily. Most of the time the people who see my slip ups are family members or close friends, so it's not as embarrassing for me. I didn't sleep well last night, and this morning I couldn't get my brain "jump started". I felt confused most of the morning and that feeling frustrates me a lot. It's a reminder of the first few weeks after my brain injury and it's a reminder that I don't like to have.

Anyway, I'm not going to go into great detail of what happened, but in a nutshell, a co-worker and close friend of mine mentioned to me a comment that another person had made concerning my character as well as the character of some of the other people I work with. It was 1) not nice & 2) not true. She wanted to let me know what was being said about me so I could put a stop to it. She knew that I had been nothing but nice and helpful to the person who was saying untrue things about me and knows what this person is really like (she has others fooled). This was the last straw and I saw "red" and exploded "crazy Jenna" in the office, thinking it was just the 2 of us in there.

I'm definitely not proud of my actions or the things I said. I know that once "crazy Jenna" was done with her explosion she felt better... until I heard the voice of my boss behind me say, "hey, can I get behind you?" Then, I was immediately ashamed of myself and embarrassed, because my actions were extremely out of character for myself and I have no idea how much he heard of what I said, especially since my language was fairly colorful. Needless to say, I beat a quick path out of the office in order to get my head back on straight.

So now I need to set things right...and I need to make sure I keep my filter with me. It was definitely a humbling day today.

Eating Strike Over...

So for the past few weeks, any kind of meal time with Juliana has looked/sounded like this:

In fact, Ryan and I wondered if we would ever have a meal time where someone wasn't crying. Well, last night, this is what dinner time with Juliana looked/sounded like.

Thank you, Jesus, for giving us this gift after the disappointing weigh in we had earlier this week.

My Heart...

This week has been rough. Noah has reverted to his behavior of right when I returned to work. Every morning has been a battle of tears and mean words from his mouth. The minute I walk through the door at Theresa's to pick them up, he starts to cry and tell me that he's mad at me. To add to all of that, Juliana lost weight- not a lot, but it was still a blow at a time I didn't need. Then, until the time Ryan comes home from work, Noah continues to say mean/hurtful things to me, spending much time in time out.

During Juliana's therapy on Monday, he walked right up to me and slapped me in the face and refused to apologize. He then spent 20 minutes in his room- I kept asking him if he was ready to apologize and he kept telling me no. I know why he's doing it. He's not getting enough attention, and I really don't know how to get him more attention right now. During the summer it was easier, because Juliana would spend a few hours a week at Theresa's house and Noah and I would go out to breakfast and do something special together. Now that I'm back at work, time after work is spent going to Juliana's therapies or doctor's appointments. We do make time on the weekends for special one on one time with Noah, but it's not enough.

Tonight I had planned on going to the Mom Connection meeting. I had missed the first meeting because it was parent's night at school, so I had really been looking forward to it all week. I was all set to go, and then Noah melted down while Ryan was up putting Juliana to bed. He cried begging me not to go, telling me he wanted "Momma, Noah time". What was it he wanted to do? He wanted to eat some goldfish crackers, snuggle on Momma's bed, and watch some tv. How was I supposed to leave? So, we spent the next hour laying on the bed watching tv. Then I got him ready for bed, and he had me read to him about Jesus. While I read to him, he laid his head on my arm. While I really needed the time with some women tonight, I wouldn't have traded this time with Noah for anything.

This One Is A Tear Jerker...

I'm a fan of the band Sanctus Real. I really enjoy their music. Their lead singer Matt and his wife Sarah had a little boy on September 10th. While Sarah was pregnant, they learned their little boy's heart was underdeveloped. He was born with a heart problem- HLHS. Heart problems are scary to say the least. While Juliana's holes are mostly closed, the enlarged left ventricle is still a concern and is always in the back of my mind. Anyway, I've been following his story on their blog, and I thought I'd share the link. It's a tear jerker, especially when you read about the morning of September 14th. His name is Bowen. If you think of it, say a prayer for their family as well. On a different note, baby Maddie came through her heart surgery well today, and will be recovering in Indianapolis for about 2 weeks.

Less Than A Pound...

Juliana had her weight check today. 2 weeks ago, she weighed in at 17 lbs 9.1 ounce. Going in, we knew it wouldn't be pretty given the events of last week. As Juliana sat naked on the scale, the nurse and I kept saying, "go up, up, up" and then, "awwwww" as the average light came on, and the weight settled at 17 lbs 8.7 ounces. Part of me wanted to cry because I was angry, and part of me was happy because I was glad that she hadn't lost MORE than that. Honestly, with how active Juliana is, I was surprised she hadn't lost more weight given how little she has been eating.

Ever since my brain injury I have struggled with anger management. After I got both kids in their car seats, I struggled with the urge to punch the side of the van and scream obscenities (yes, the ugly side rears its head). I held back and instead got into the van and turned it on. A song came on the radio and the lyrics caught my attention, so I picked up my cell phone and called Ryan. He answered right away. I told him her weight. I could hear the disappointment in his voice, but like me he was glad the weight loss wasn't greater. "It is what it is and we can't control it", he said, and he's right. We have 2 weeks to get some weight back on her, and I'm going to try to not stress about it. I just really don't want to have a G-tube put in her.

On a different note, one of my childhood friends has a little girl with Down's Syndrome who is having open heart surgery tomorrow morning. If you could keep them in your prayers I know they would really appreciate it. It certainly makes Juliana's issues seem small knowing they are going through something as major as this.

Good News...

Over the weekend, some good things happened, that I'd like to share.

1) Ryan finally agreed to join a Journey Group at church. When we lived up in Wheaton, we were in a really great small group (yeah Steve, Jill, Tracy and Eric, I'm talking about you guys). Ryan likes to describe himself as a hermit, so I've been praying that he would join one of the guy groups because, as you all know, we are a bit stressed out with Juliana and I think it would be good if he had people to talk to or do "guy stuff" with. While I am the ultimate tom-boy, I don't fit the bill in all aspects.

2) Juliana finally decided that Ryan and I are right. Going down the steps head first is NOT the correct way, and has settled for going down the steps on her tummy feet first. In fact, she has become so proficient at this, that if you are not paying attention, she may take you out at the ankles. Ryan, Miss Meghan (her physical therapist), Theresa, and I have been working on this one since the end of May, and it has finally happened. I'm going to try to get some video of her racing down the steps and post it soon. Meghan was pretty surprised to see how speedy she was at today's therapy session.

3) Because Juliana has finally decided to do the steps our way, we have finally been able to get rid of the baby gate at the bottom of the steps, and it definitely looks weird after being there for 3+ years. We left the gate at the top of the stairs where the bedrooms are because if Noah ever realizes that he can get out of his big boy bed before we get him in the morning, I don't want to have to worry about him falling down the steps (or whenever Juliana the monkey figures out how to climb out of her crib which I fear may happen soon).

Since I feel like all I am ever doing is complaining/whining, I thought I would take the time to share some good news. Thanks to everyone who have been praying for us. We really appreciate it.

This Little Light Of Mine...

On Sundays we take two cars to church. This way, after the first service, Ryan can take both kids home and get Juliana down for her nap (if she needs one- she's starting to give up the morning nap) or get her fed, while I serve in the 2's and 3's room during the second service. Noah usually chooses to ride to church in the "man car" with Ryan. The "man car" is Ryan's Honda Civic stick shift. They listen to Veggie Tales on the way to church.

Today, Noah chose to ride in the car with me. He asked to listen to the Veggies on the way to church, so I put them on. Normally, I don't take the time to pay attention to what Veggie Tale song is playing, because they were on all the time this summer, but today I did. The first song was, "If You're Happy and You Know It..." and I noticed Noah was singing along and clapping his hands, stomping his feet, and doing what else the song told him to do. The next song was, "This Little Light Of Mine..." I noticed Noah was singing the words too.

Then he asked me, "let it shine till Jesus comes? When is Jesus coming, Momma?" I told him that I didn't know, that no one knows when Jesus will come. So Noah gave me his standard answer, "Maybe tomorrow, Momma". Then I pulled into a parking spot at church, and Ryan opened Noah's side of the van, and Noah said, "I'm gonna let my light shine, Daddy!"

Have a great week!

Just Plain Tired...

Recently, Ryan and I saw the movie, "Date Night". It was fairly funny, with a few inappropriate scenes that were not needed as are in most movies these days. There is a scene where Steve Carrell and Tina Fey are driving to the city for their big night, and Steve tells Tina that his"dream girl" is Cindy Lauper or someone like that. Then he asks Tina what her fantasy is. She says something along the lines of "being alone in a hotel room with the quietness, away from everyone". Oh my gosh, that is so me lately! The funny thing is, if I was alone with myself, I wouldn't want to be, but I long to be away from the stress of life right now.

The little girl has been on an eating & drinking "strike" since her last projectile, which was Monday. I think her daily totals have been maybe 10 ounces a day and I'm being very generous with my number here. Maybe a little more, maybe a little less. I don't know how she or her little body functions. She is still a little ball of energy climbing the slide, the ladder to the jungle gym, crawling around, but she doesn't eat or drink. All of us adults are busy freaking out about her calories, and she just looks at us, grins and crawls away or cries when we present her with a cup, bottle, or food.

I called the doctor, just because I need peace of mind. I can visibly see that she is doing alright, but I worry about her internally. I teach anatomy & physiology. I know what can happen to your body if you aren't getting the right nutrition. I also know that I have to bring her in to get her weighed on Tuesday. I know what the GI doctor's thoughts are leading to in October if her weight gain isn't sufficient or has declined. There are things I know that I wish I didn't know.

After I answer all the nurse's questions, I'm told that if she goes down to 3 or less wet diapers a day, I need to bring her in. They are just as baffled as I am and cannot understand why she is not dehydrated and listless. She's a little trooper. A stubborn little trooper. I'd say she gets her stubborness from Ryan, but I think my parents would say she gets some of it from me as well, so I guess we can share in the blame.

Needless to say that I am not sleeping well this week. I haven't really been sleeping well since I went back to work, but this week it has been worse. I started waking up wide awake at 4:30 AM, and I mean wide awake. So, I've started running again in the morning- I had been doing that all summer but when school started up again I stopped. This morning, I woke up wide awake at 2:30 AM (after falling asleep at 10:30 PM). I should have gotten up and done some grading that has been piling up on me, but I laid in bed flipping over and over until I figured it was an okay time for me to go for my run. It's kind of peaceful running in the early morning before anyone else is really up, and I am most definitely not a morning person. It has allowed me to clear my mind and focus on God and where He is leading me.

This Is Not A Drill...

Juliana goes through spurts of projectiling. A few weeks ago she was switched to a high calorie drink- Boost 1.5, which she actually will drink. The down side to it, is if she drinks more than 4 ounces at a sitting, she projectiles it. Sometimes she projectiles it if she drinks less than 4 ounces. It's more or less a guessing game. Most of the time "main event" occurs at dinner time. We basically have it down to a science now.

Juliana gets this look on her face, and her mouth forms a perfect "0". Ryan and I immediately move items out of the way at the dinner table, and I grab the "chuck bucket"- if there's time. Noah knows to leave the dinner table and go sit on the couch in the living room (he starts to gag & then that's more vomit to clean up). If it's early into the meal, one of us sets up a tv tray and Noah finishes his dinner in the living room- poor kid. The dogs even know what to do by now. They either go into the living room with Noah or they go and sit on the steps if dinner is mostly over. After she finishes, I get her bath ready and Ryan cleans up her high chair. Noah will come up and help with her bath then.

Now, sometimes it happens while Ryan is putting her to bed. Then the role is reversed. I clean up the room and the floor and Ryan gives her the bath if needed.

Today, we got to do both. I'm not going to lie, it's starting to get a little old. It really is. I think we've cleaned up more vomit in Juliana's 16 months than most people have.

A Day Out With Thomas...

Last year Grandpa Jim got us all tickets to a Day Out With Thomas. Everyone had a great time at it, except Juliana, who was a nightmare. She screamed the the entire time we were there, except when we were riding on Thomas. It didn't help that it was the hottest day in August and Juliana was overheated.

This year, we were bound and determined to not have the "Juliana experience" again, especially since August was heating up again. Ryan came up with a great idea- ice packs. We dressed Juliana in a very light outfit and packed a bunch of ice packs and a towel for the stroller. I know it seems odd to pack your daughter in ice packs, but if you've ever felt Juliana, you've noticed that she runs a bit warmer than most people.

And guess what? EVERYONE had a great time! Juliana even let a nice older man put a tattoo on her arm. Juliana did succeed in melting the ice packs, and she was cooler than the rest of us. She didn't even melt down until right about the time we were going to leave, so it worked out well for us. Noah had an amazing time. I didn't think he could get more excited than he was last year but I was wrong. Plus, since Juliana was in a better mood, we got to tour the train museum, which Noah thought was very cool.

Here are some pictures from our "day out with Thomas". Thanks Frampa!