Our Life

Well, we've been detoxing Breianna for 2 solid weeks. It's evident that she has a gluten/casein intolerance due to her reaction to being taken off of the casein. She's gotta have it!!!!! She licks the tv after I clean it (apparently there's gluten in the cleaner), she licks the cabinets after I wipe them down, and she chews on anything with adhesive on it. It's like she's a drug addict. Kinda funny, but then she gets the gluten and we start all over again. Looking at the world differently now, hand creams, soaps, laundry detergent, shampoo/conditioner etc....all need to be gluten/casein free or she'll absorb them. So, we've been shopping differently, we were already very conscious of reading labels, try to be as natural and organic as possible. This, is new though. Casein and gluten are in EVERYTHING! So with the help of some online resources and friends who have kiddos with the same lifestyle we've managed to make it through these 2 weeks without losing our minds.



Davis and Baylie are being very good sports. Drinking fruit/veggie smoothies and eating new foods that are Breianna friendly for fear of cross-contamination. I'm finding new recipes that I can't wait to try and learning about almond and potato flour.



We are slowly introducing Brei's supplements (very extensive list with 27 doses per day). This requires a very regimented schedule so we have our days planned out for us as far as what time to do certain dosages and when to do her g-tube feeds. We are learning, to say it's running smoothly would be lying. We are getting there though.



Life is challenging to say the least. We are adjusting everyday to the new challenges that Brei faces as she grows up. As we learn more about her illness there will likely be more changes and adjustments.



I am so thankful to have such an amazing family. The kids are so supportive and Davis is so extremely helpful with everything. Barry is knowledgeable and can do everything that Brei needs if I need breaks. My friends are priceless. Most of them have special needs children so they are fighting their own daily battles with meds/supplements/machines/therapies/ etc. I am in awe of how these families just GET IT DONE. They tackle it head on. My husband call us pit bulls, I guess we are, us mom's of special special children that need cared for around the clock.



God has given me such a responsibility and I lean on him for strength to make it through the overwhelming days. He has given me the tools needed to make it through with a smile if I just remember to give him control.



Dear Lord, Please help me to have the strength to endure the struggles of this world with a quiet endurance. Help me not to complain or feel sorry for myself. You have blessed me with so many wonderful things and I thank you for my hardships and pain. They teach me to lean on you and rely on you for all that I need to make it through. Amen

Today's Scripture: Psalm 118

O give thanks unto the LORD; for he is good: because his mercy endureth for ever.
2 Let Israel now say, that his mercy endureth for ever.
3 Let the house of Aaron now say, that his mercy endureth for ever.
4 Let them now that fear the LORD say, that his mercy endureth for ever.
5 I called upon the LORD in distress: the LORD answered me, and set me in a large place.
6 The LORD is on my side; I will not fear: what can man do unto me?
7 The LORD taketh my part with them that help me: therefore shall I see my desire upon them that hate me.
8 It is better to trust in the LORD than to put confidence in man.
9 It is better to trust in the LORD than to put confidence in princes.
10 All nations compassed me about: but in the name of the LORD will I destroy them.
11 They compassed me about; yea, they compassed me about: but in the name of the LORD I will destroy them.
12 They compassed me about like bees: they are quenched as the fire of thorns: for in the name of the LORD I will destroy them.
13 Thou hast thrust sore at me that I might fall: but the LORD helped me.
14 The LORD is my strength and song, and is become my salvation.
15 The voice of rejoicing and salvation is in the tabernacles of the righteous: the right hand of the LORD doeth valiantly.
16 The right hand of the LORD is exalted: the right hand of the LORD doeth valiantly.
17 I shall not die, but live, and declare the works of the LORD.
18 The LORD hath chastened me sore: but he hath not given me over unto death.
19 Open to me the gates of righteousness: I will go into them, and I will praise the LORD:
20 This gate of the LORD, into which the righteous shall enter.
21 I will praise thee: for thou hast heard me, and art become my salvation.
22 The stone which the builders refused is become the head stone of the corner.
23 This is the LORD's doing; it is marvellous in our eyes.
24 This is the day which the LORD hath made; we will rejoice and be glad in it.
25 Save now, I beseech thee, O LORD: O LORD, I beseech thee, send now prosperity.
26 Blessed be he that cometh in the name of the LORD: we have blessed you out of the house of the LORD.
27 God is the LORD, which hath shewed us light: bind the sacrifice with cords, even unto the horns of the altar.
28 Thou art my God, and I will praise thee: thou art my God, I will exalt thee.
29 O give thanks unto the LORD; for he is good: for his mercy endureth for ever.

My family comes to Ohio!

Jake, Baylie, Brei and Jordyn - 4th of July parade, Clarksville, OH !

Happy 2nd Birthday to my Baylie Jean!

Brother-in-law Jeremy with my nephew Jaxon.

My parents, Jaxon, Julita, and Baylie.

Grandpa and Baylie

Tara, Teagin and Justin @ King's Island

Jake, Davis and Jordyn after a long day at King's Island.

4th of July in a small town

I grew up in a small town. I know there are stereotypes about the "hicks" from the farming communities. I used to hate it. Having to drive 45 minutes just to go to a real grocery store, or to the mall or to the movies. Living out in the country with no friends to hang out with, as a teenager that was just the worst. So, my husband and I moved our family to the country 2 years ago. To the thing I grew up hating. Looking back, I didn't really hate it, I remember only the good that came from it. The close knit community that always had your back, the friends that you grew up with and have known since Kindergarten, the work ethic of middle class America, the pride of working the ground and helping on the family farm, and the patriotism at the small town parade. Yes, it's great to go to the "big city" parades and see all of the hoopla and the big "bang" of the 4th of July fireworks. I think that it's even better, though, to be a part of a "small town" parade, and sit on a trailer next to my son, the proud Cub Scout who is learning all about loving his country, honoring and respecting his parents and other adults, and knowing the love of Jesus. So, we didn't see Rozzi's fireworks this year, but we did spend time with family and enjoyed a very small town's 4th of July parade that was BIG on patriotism and honor.

Kamp Dovetail

Brei had a fabulous 2 day camp experience at Rocky Fork Lake in Hillsboro, Ohio, home of Kamp Dovetail. This is her 2nd of many more years attending this wonderful camp for children and young adults with medical needs and developmental disabilities. This camp blows my mind. I mean, it literally takes my breath away. I wish I had a good picture of the entrance into this camp. I'm going to try to give you a visual of the depth of human kindness that takes place each summer at Rocky Fork. When you enter into the campsite the entire camp is set up so there are the week long overnight campers which are age 9 and up and then there is the day camp section which is for the kiddos ages 4 - 9. So you walk past the campsite of the overnight camp to get to the day camp. This is when I cry everytime. There are more than 600 volunteers that are working with these kids. Each camper has a volunteer with them. Volunteers range from age 14 and up. To be a volunteer at this camp isn't like you just show up and get a kid assigned to you and you are off. Oh no, it's a year long process of training and learning about the person you will be assigned to. So, during this week, you will see 14 year olds changing trach ties, doing tube feeds, pushing around wheelchairs, assisting in the restroom, pretty much anything you can think of, these people have been trained to do it. That's what takes my breath away. Then it gets better....the tents....everywhere...tents and campers. What a site. All of it donated for these kids. So people just bring their campers and set up for kids that cannot stay in tents because of their medical conditions. There are also nurses that volunteer to come up at night and set up equipment for the kids that are on oxygen and other various things. I'm getting teary just thinking about all of this. The kids get to ride horses everyday. People with horses just show up with their trailers and spend the entire week assisting kids onto the horses and walking them around. I hope they get as much out of it as I do. Anyone with a child with a disability (or 2 or 3 different abilities as I like to call it :) knows that horses are very therapeutic. Watching kids on those horses, seeing their faces light up like you just gave them the world, it's priceless to watch I hope the volunteers know how appreciated they are for taking time out of their lives to give this gift to the kids. The campers also get to go on boat rides. Mostly the retired folk that live on the lake are the ones who volunteer for this. They dock their boats and load up the kids and off they go. Each kid gets a turn at the wheel. For me, this is the best part of the camp because for my Brei, it's like you just gave her ice cream (which she can't have). So to be able to give her something that makes her as happy as I am eating ice cream on a hot day, it's simply fabulous. Day campers get to end each day with lots of swimming. This year, Brei was more independent in the water and it's where her body works the best so we let her swim for over 1 1/2 hours. She's also very fascinated with tattoos for some reason. This started about a month ago. She noticed after getting out of the pool that someone was doing face painting. She was a bit curious about what was going on so she walked over and just stared for a minute. When she saw the finished product it was like having a tattoo. She did a very "typical" thing and cut in line so she could be next. I was so shocked, my child went and got in line...even though she cut, if you knew her and her delays and stuff you'd get what I'm saying here. She understood the concept of the line, then cut, to get her face painted. There are just so many accomplishments there. One takes these things for granted....I don't. The sensory issues alone make her not want anyone to touch her face, but to have someone touch it with a brush. This is just so fabulous! So, she got 2 "tattoos" and I was so happy to see how happy she was. This was the last activity til next year. I cannot wait to see all the changes that will take place when I reflect on next years experience at the happiest place on earth...Kamp Dovetail.

Thrilling Tuesday

Well, today was anything but boring. The Wulf's got up at 6:00 to get out the door for a fun day at King's Island. Breianna had Speech Therapy at 8:00 so we decided we should just all go to the appointment and try to get to King's Island at 9:30 for the Gold Pass Early Admission. Well worth it, by the way. I cannot believe we got out of the house by 7:15 on the dot. We didn't even forget anything. Davis was packed up and ready for his 3 day hiatus to my in-laws, the cooler was packed up with all of our snacks and lunch, bags were packed, and tube feedings were dosed out. Davis, Baylie and I ran a few errands while Barry stayed with Brei at therapy then we were off to a day of fun. Arriving at 9:30 was great. Barry and Davis went on ahead and got a chance to ride some of the typically "long wait" rides before the crowds arrived. I stayed back with the girls to change diapers, apply sunscreen, pack up the snacks and all of the other "motherly" things.

We met up with the guys at the Racer. Davis just loves this coaster. It's so fun watching the excitement on his face when he's about to go ride a coaster. Next stop was the Scrambler. Brei was finally tall enough to ride it and she absolutely loved it. She giggled for the entire ride. We rode a few rides in kiddy land before heading over to the water park. The kids really wanted to ride the train over so Barry took the stroller and walked over to wait on us. The kids and I walked to the train depot to board. It was pretty cool riding the train. We went underneath a portion of the Diamondback that's not visible from most parts of the park. Once we met back up with Barry we decided to head to the car for a quick lunch. I'm so glad I packed a cooler. Not only does it save us money but it helps us to make healthier choices. It's so important for the kids to understand, even at an early age, that there are ways to save money even on a day out. Packing a cooler is a simple way to cut costs, especially at a place where the food is so overpriced.

The rest of the day was spent in the water. Breianna may have a new favorite, the wave pool. She had so much fun. I took her out pretty far so that she could be on top of the waves. Davis was glad because he loves to go out and swim over the waves. I can't believe how brave he's gotten. A few years ago he wouldn't go out very far and he was unsure of the water. Now he just goes out like a pro. Baylie had a blast today too. The first two visits she didn't like the rides or the water. Today she was really brave and tested the water to see what it's all about. She really enjoyed her exploration. Barry and I enjoyed our day with the kids. It was so nice to have family time.

Davis went home with MeMa and will be staying with MeMa and Papa until Friday. They have lots of fun planned for him, including a few days of golf camp and a visit to a new Lego store at Kenwood Mall.

The girls were tired so when we got home we lounged around for the remainder of the evening.

I'll try to post daily this week. We have a busy week planned.

Be Still

Why is it when life gets tough we want to control the situation around us? When we are having difficulty knowing which direction to take, why do we forget to lean on God and know that he will lead us the right way? Why are we always taking matters into our own hands? Psalms 46:10 says "Be Still and know that I am God". This scripture is so comforting. So few words yet so powerful. But why is this so difficult for us? Be still, stop trying to control how and when and where, draw on our Lord's strength and his wisdom to see us through the tough times. He knows and He will answer, if we let Him.

This was the topic of conversation today. We needed to be reminded to let go of situations that we were trying to control. To be reminded to lean on Christ in everything. It's easy to be thankful for our blessings and to lean on Him when things are going good, but when life stops us dead in our tracks, that's when we say, whoa, hang on a minute, I'm not going to wait on you to present the answers to me. I'm doing this thing my way. Look at what this means though, do we fret, worry, have short tempers, frustrate easily, mope around, say hurtful things and even sometimes behave in a spiteful manner? Generally this tends to make the situation worse. Isn't this, then, the very best time to lean on Christ, when we don't have it all together? Give it to him and have faith that he knows more about this than we do.

Psalms 47 begins by saying in verse 1 " God is our refuge and strength, an ever-present help in trouble". I don't know about you, but no matter how good our friends are or how loving our husband is, I don't know anyone that is "ever-present". Someone who never leaves us and always wants what is best for us.

The passage continues by saying in verses 2 - 11 Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, 3 though its waters roar and foam and the mountains quake with their surging. 4 There is a river whose streams make glad the city of God, the holy place where the Most High dwells. 5 God is within her, she will not fall; God will help her at break of day. 6 Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. 7 The LORD Almighty is with us; the God of Jacob is our fortress. 8 Come and see the works of the LORD, the desolations he has brought on the earth. 9 He makes wars cease to the ends of the earth; he breaks the bow and shatters the spear, he burns the shields [b] with fire. 10 "Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth." 11 The LORD Almighty is with us; the God of Jacob is our fortress.

He makes the wars cease. That sort of stands out. If he can make the wars cease, then I'm sure he can take away the turmoil in our lives. If only we let him.

"Dear Lord, help us to give everything to you in thoughtful prayer. Help us to give you our hardships and turmoil so that you can see us through to the other side of difficult times. Thank you for the promise that you will be with us always, even in times of trouble. Help us to Be Still and know that you are God. Amen".

Having fun at King's island. Baylie is waiting for Davis and Brei to ride Little Bill's Roller Coaster. She didn't like the rides much this particular day so she just watched everyone else ride.