Our Week In Pictures

I thought it would be fun to give you a few pictures each Friday of what our family has been up to the past week!

Sydney loves playing in her sister's hamper and even walked around with it on :)

We practiced a modified Constraint therapy and Liana did such a great job eating her spring roll with her right hand!

Of course we have a few pictures of our snow day!

And to finish off the week, Wade took Liana on a Daddy Date Night. 

Red Rocker Review

Over the years, we have used many different gross and fine motor therapy toys (thanks to my husband's generous mom!). One that my girls enjoyed a lot was the red rocker. On one side it is a set of stairs that works on learning to step up and balance. The other side is a rocking boat that both girls had enough space to sit in and as they rocked back and forth (similar to a see-saw) Liana was able to work on strengthening her torso to stay steady.

This toy was incredibly helpful when Liana was first learning to walk and as she learned how to conquer stepping up on a curb or even helping her learn how to walk up our own stairs. If she happened to fall on these steps it wasn't a long fall and we also bought the rails to go with it so she was able to hold on.

We worked on alternating which foot was the leader and using both right and left hands to hold the rail.    One of their favorite things to do when they were around 2 was to sit in on the boat side and pretend they were going on safaris. They would point to all the animals they saw as Wade or I rocked the boat like they were bumping along the road.

I love having therapy tools that the children don't realize is therapy. And this red rocker did just that. If your child is in need of working on steps or balance this is a great tool to have. We have the one that is plastic but there is also a wooden version. Enjoy playing! Here are the girls about 2 years old playing in their Red Rocker. And yes Liana was eating purple sand before I took the picture. Here is a link where you can order from Children's Factory the Red Rocker.

The Hard Questions

"When will my right side heal?"
"Why is it harder for me to ride my bike?"
"Why do I have to go to the doctor all the time?"
"Why can't we hug Sydney when we have a cough?"

These are just a few and I know some of you have even harder ones that your little ones ask. What is the right answer? I am learning a lot in this area. My girls are getting to an age where they are very observant about what is going on around them. They see how others act and know when something is different. And so we have been answering a lot of questions.

They way I may answer these questions in a year may change but as of right now we talk about how God has made everyone different. I think kids connect to real life examples, something they can see. So we have watched lots of videos of little kids having a cast put on, or someone putting on a shirt with a weak side. I let them see videos of adults who have overcome so much and still trust God's plan for their life. My personal favorite video is one of Nick Vujicic. He challenges you to be thankful for the things you are able to do and it is amazing to see the things he has pushed himself to learn how to do with no arms or legs.

I have a friend who has children with cystic fibrosis and they visited a family who had boys with asthma. When her daughter saw the boys doing a breathing treatment, she stated that they were doing exactly what she has to do. It was normal. When we expose our children to other things that are different then we can begin to normalize it.

We took Liana to Constraint Induced Movement Therapy Camp about 2 years ago. At the time she wore a brace (AFO) on her foot that had little hearts all over it. When we walked into the camp, there were about 10 other children there. And then Liana got so happy and pointed to me a little girl, "Mommy, her brace looks just like mine!" It was the first real time Liana had been in a room with other children that were in the exact same boat as she was.

One thing we talk about a lot is how we can help others. We talk about the experiences we go through will be used one day to help someone else. We told Adleigh about a little girl with a heart condition recently and Adleigh prayed for her daily because she made an immediate connection with her own heart issues.

As a mom, the best thing I can do is show that with whatever situation we have, that it can be overcome and that God can use those things for good. He can show His glory through those situations. It takes having a positive attitude even when you are having to fight back tears and a lot of leaning into God for His strength. But I know my children will be strong, have their own story to tell one day and will be able to help so many others with their personal experiences.

Let Him inhabit the praises

I've been reading "Jesus Calling" by Sarah Young. I am loving it. Thankful for my sweet husband that got it for me.

One devotion that I keep thinking about is one she wrote on praise. I think my spirit has been so open to that topic since Pastor Steven recently preached a whole series on thanks and praise at church. So I loved when I read, "It is impossible to praise or thank me [God] too much. As it is written, I inhabit the praises of my people."

Isn't that such an amazing thought. That when we thank God or when we praise Him that we are in more intimate place with Him. Our praise can be an overflow like when we get amazing news and praise Jesus for His goodness and blessings. Or it can be more planned like when we sing a worship song to focus our mind and heart on Him.

I think one of the most important things moms can do is to praise and thank even when you feel more like crying and screaming. Sarah Young goes further in her devotion by saying "when adversity strikes and you thank Me anyway, your trust in My sovereignty is a showpiece in invisible realms." This reminds me of Job. Even when the enemy threw his worst at Job, Job stilled praised the Lord. And we can imagine God talking to His angels about the events and beaming with pride at his servant Job.

So even if you get bad news at your child's next doctor appointment, praise God that you are able to go to the doctor and get medical attention. Praise Him that you have support around you to get you through this. And praise Him that God loves your child so much more than you ever could and has His hands on your child.

When you get great news that you just got a better job, praise God that He has blessed you financially. Praise Him that you are able to work hard.

What event is happening in your life right now, whether good or bad, that you need to stop and give Him praises. No matter the situation send your praise and thanks to Jesus and let Him inhabit them. Are you giving God enough opportunities to inhabit your praises?

To read more about praying with thanksgiving when you ask something of God you need to read Holly Furtick's blog. Check it out here.

Community

Yesterday, I had my eGroup with other moms who have special needs children. We have moms representing autism, brain injuries, cystic fibrosis, cerebral palsy, paralysis, rare neurological genetic conditions. So as you can tell we have a lot to talk about. But we didn't have this group until a few months ago and I can't imagine a month where I wouldn't meet with the ladies now. It is such a fun group and we encourage each other. When I thought about what we deal with in my family, I knew that we should have an eGroup with other moms like deal with these issues too. It helped that one of the ladies in our group basically told me I had to start it :)

Our first book was Desperate: Hope for the Mom who Needs to Breathe. It is such a great book and talks about the need for our generation of women to have community. Way back in the day, people didn't really leave their hometown. So you lived where your mom, grandma, sisters, cousins all lived. You had instant community. But what do you do now when you live 5 hours away from them all? You have to make a new community.

I am now listening to a sermon series from Craig Groeschel called Friending. He says that we should have around 5 friends that would pick up your phone call at 2am and help you no matter what, but most Americans only have 2. How many do you have? What do you need to do to open yourself up to friendship? It takes work to keep your friendship up but it is so worth it to have people you can do life with. More importantly the way you invest in your friends is the type of friend you will get back. If you need a friend who says they will pray with you then you need to be a friend that prays for them.

The one word I keep getting when I think about making my community is "intentional." What are you doing right now that is developing your friendship with someone? What are some steps that you can take that may be out of your comfort zone that will have a lasting impact on you and your family? I want my children to grow up and remember our home as open, inviting, lively. But that takes work...seriously you have to clean and cook and not burn your food. Are you up to the challenge? It is worth it!

10 Reasons to buy Only King Forever by Elevation Worship

It is release day!!! I am so proud of Elevation Worship and their new album Only King Forever! Our church has been singing these songs for several months and every single one of the songs on the album is seriously amazing!! My personal favorites are Last Word (see the last post) and The Love of Jesus because they mean so much to my family walking through Sydney's cystic fibrosis.

You can get it on iTunes right now and it is only $9.99. Here is the link to download and you will truly be blessed. /elevat.io/n/okfitunes 

If you are on the fence if you should buy it then here are 10 reasons you should:

1. Amazing songs...great quality. Sometimes that a little harder to find in christian music.
2. Our worship team is truly amazing. If you sat down with any worship leader, singer, musician you would love them.
3. So many resources. If you are in a church and want to sing these songs, Elevation Worship has made it so easy to get chord charts, lyrics, video tutorials for each song. Check it out here: http://elevationworship.com
4. These songs are written from our journey as a church. We see what the people of our church are going through and these songs reflect them. If you need songs that speak to the situations you are going through what better album than this?
5. The songs are life-giving, energetic, encouraging, hopeful. Your spirit needs to have more songs like these.
6. Song lyrics stick with you. Would you rather have the lyrics to Miley Cyrus's latest song in your head or songs about Jesus? 
7. You get 14 tracks. That is $0.71 per track. You can't even buy a bottle of water that cheap.
8. If you are going through any illness or hardship then you need this CD. This songs are the words I didn't know how to express with all that we have walked through with prematurity, cerebral palsy and cystic fibrosis. I truly get chills each time I hear this CD because of how powerful these words are.
9. If you hold off buying 2 Starbucks drinks you have your Only King Forever album paid for. You can do it :)
10. Finally, because your whole entire family will want to listen to this. I play this CD while I cook, get ready, drive for errands and then I look at my 5 year olds and see them singing along. That's when you know that you have placed something amazing into your children. When we worship we focus on Jesus, not on our circumstances. There is hope, there is peace, there is life.

I am so proud of our team and truly believe you will love this CD. Go get it now: elevat.io/n/okfitunes 

Last Word

I am so excited for this weekend. We just opened our newest Elevation campus in the Lake Norman area! And to top it off the new Elevation Worship album is being released to our church. If you don't attend Elevation you can get it on the 14th :) The sermon was absolutely amazing so you don't want to miss tomorrow!

Every song on the album is seriously so good! I don't cry and I get teary-eyed every time I listen to the album. One of my friends texted me the other day and said, "Ever since I got the new album, I just drive around in my car crying. These songs are my favorite." So with all that being said make sure you get one!

But I wanted to share with you guys one of the reasons this album means so much to our family. Wade started writing the Last Word with our daughter Sydney in his mind. We had been given the diagnosis of cystic fibrosis several months before. She had spent her first 4 months with an ostomy bag, taking enzymes before eating, and her lungs being checked all the time. We were going back in the hospital for her ostomy reversal and kept thinking about how Jesus has the power over her body instead of a condition. We would get discouraged but we heard Pastor Steven's message in the hospital and knew Jesus was in control. I remember Wade sitting in the hospital room humming the melody to this and beginning the chorus of "you have the last word, it is finished." It is so awesome to see how it transformed and became such a powerful song and one that our church sings with so much passion.

Worship music has power. One song can lift your spirits because you sing truth about our Savior. The enemy wants you to think your situation is hopeless, that there is no reason to believe in something better. But Jesus has told us he has all power and his spirit is with us. I love the bridge to the song:

Your word stands through the ages
Your voice shatters the darkness
In you we are more than conquerors
You speak and strongholds surrender
Your name overcomes the enemy
In you we are more than conquerors

Your situation may not go away. We still deal with Sydney's cystic fibrosis. But when we trust in the Lord and when we focus on Him instead of our circumstances you will be able to walk through it. You will be able to see hope in the situation and overcome!

Here are the videos to the story behind the Last Word and the Live Version.

Big Steps

I remember some of our physical therapy sessions with Liana when she was first learning to walk. She started walking around 21 months (18 months corrected). We even have a video where I would say to her "little steps, little steps" as she walked across the room. I posted it on this blog before but here it is again. Isn't she the most adorable tiny walker?!?

I am thankful that Liana has Adleigh with her. I know not everyone has a built in playmate to bring to their therapy sessions but there is something about having someone to race against or play catch with. It is always more fun to turn everything into a game. Today Liana had PT and it was so great to see how she had gotten better at some of the activities in just the last few months from us practicing at home. I loved this picture of her taking big steps to really stretch her legs and she did it 10 times in a row!

Therapy has been so beneficial for her. She has learned so much and gotten so much stronger. But we are reaching a point where I wonder what our next step will be. I know I always want to keep some type of PT or OT in her life as a checkup on how she is doing and to help us with her AFO. But I wonder if taking away some therapy and replacing it with dance, gymnastics, or swimming is the way to go.

Last summer we went down to 1 therapy a month for OT and PT and had the girls in swimming and I saw a lot of strength in her weaker side develop. But then the girls started getting nervous about the water so we had to take a break with it. I know we will do swimming again this summer but more likely just recreational instead of them feeling like they have to go to lessons. So I am now considering dance. Have any of you gone down in your PT and OT numbers and did an extracurricular activity instead? I would love to hear what has worked for your family!

Add Velcro

Liana has to be one of the most patient and determined little girls I know. Of course, she can get frustrated sometimes but she has a spirit about her that will keep trying. I am so thankful God made her this way and it is such a blessing to see her conquer something and the giddiness she has afterwards.

Since the twins were little, we tried lots of different tricycles. We had a radio flyer one, a fisher price one and we tried various ones at therapy. But none of them ever worked that great and the girls were never super excited about riding them. Last year we got them scooters and we finally had some excitement, but Wade and I really wanted them to learn how to ride a legit bike.

So for Christmas, Santa brought a two wheel bike (with training wheels) and the girls were so happy they had their first real bike. That week Wade went out with them to practice and that's when were unsure if we had made the right choice. Liana was struggling to get her bike to move. She would see Adleigh going all over the place and get discouraged. Wade being the incredible dad he is helped push her and told her learning to rides bikes is a process. She came home saying she had fun but I could tell that she was bummed. Our problem was that her feet didn't want to stay on the pedals. It may have something to do with leg strength or how she goes on her toe when she walks but we needed a solution.

We knew we needed to do some kind of modification to her bike so I looked up pedal toe clips, straps, etc to figure something out. It was going to take a while for stuff to get here and I wanted her to have a victory before she decided biking isn't for her. So we pulled out some velcro and wrapped it around her feet onto the pedals. Now I know that when we decide to take off training wheels we will need another option because if she falls then she can't put her feet down, but as of now and with our helmet/ kneepads/ elbowpads/ gloves we should be good.

I let her go around the house to practice since it was cold and raining that night and first started following her on my knees with my hands on her feet doing the right motions for her. Then we progressed to calling out "left foot down" "right foot down" while she moved her feet by herself. And then it clicked and she was doing it all by herself. One time some velcro got loose but she was still able to to push the bike! To say we were excited was an understatement! She was so proud of herself and said "I kept trying and now I can do it!"

How simple was the solution but how incredible was the result. Adleigh and Liana are so excited about their bikes now and all it took was a little velcro for Liana to feel like she was on the same level as Adleigh. I can't wait to take both of them out for a real bike ride now :)

Here is Liana riding with and without velcro:

And then we had 3

I have a birth story for the twins on here so this is Sydney's story.

After you have twins, it takes a little while to get up the courage to think about another baby. I loved having twins but that first year is hard. And when you know you will now have 2 other children running around instead of focusing your energy on the new baby/babies you take your time. Not to mention what in the world would you do if you have twins again! But Wade and I eventually decided that after 4 years we could try again.

This time around we would pray for our baby and we did pray for specific things like a happy baby or a chill baby since we had 4 year olds, but the biggest prayer and the one we prayed everyday was that our baby would be healthy. And Sydney's pregnancy was the best. I even felt good enough to go to Australia when I was 22 weeks with her (hence her name) and we had no concerns. I was getting the pregnancy I had been praying for. Sydney was breech forever but around 38 weeks she turned and then waited until the night before I had to be induced at 41 weeks to decide to come.

I told Wade at 8pm on Nov 5th that I was starting to feel contractions and by 10pm they were about 3 or 4 minutes apart and incredibly painful. I have a high pain tolerance so I figured if I was in that much pain then it must be about time to head to the hospital. When we got there I found out that I was only 3cm dilated but that I had apparently been leaking the amniotic fluid slowly for awhile and there was none left. The contractions were much more intense since Sydney no longer had any cushioning left. I tried so hard to have a natural childbirth but finally at 3am I got an epidural. The contractions were never going down so I had no rest and couldn't get any sleep. Once the epidural happened I was able to rest a little and around 7am I was 10cm dilated.

The next couple of hours were the worst. Apparently Sydney was sideways now so her head was stuck in the birth canal. I pushed for 2.5 hours but Sydney wouldn't budge. I had been praying that I wouldn't have to have a c-section and we were so close but the doctors told me about 3 different times if she didn't come soon then we would have to do a c-section. The last resort was the vacuum and after about 3 pushes with that she finally came out.

It was the best moment ever. Born at 11:12 am weighing 8lbs 6ozs. She was perfect. Big. Full-term. Healthy. Everything we had prayed for. She was even able to nurse right after she was born, something the twins had never been able to do.

Then after a few hours she started spitting up a little blood. And a doctor came to say he was going to take her to get some test done in the NICU. We couldn't believe that our newest daughter had to go to the NICU too, but we convinced ourselves it would be nothing and there would be a simple explanation. About an hour later, the doctor came back and said her abdomen was filled with air and they had to do emergency surgery. We found out her intestine had ruptured and she came out of the surgery with an colostomy bag.

It took a few weeks to figure out what was going on with Sydney. We were told Hirschsprung's disease until the tests came back negative. When the newborn screens came back, we got our answer. Sydney was diagnosed with cystic fibrosis, double delta-f508 mutations. Wade and I cried. Getting that news was ridiculously hard for me. All 3 of our children are NICU babies that had pretty intense issues. Sydney had to stay in the NICU for about a month. I was scared and I didn't want to go through all this again.

Even though it has been hard to receive this diagnosis, I began to see how God had prepared our family for this. He brought us through so much with the twins and He had us in a church that always supports us. He brought Wade's family up to Charlotte so that we now had help. God has always been with us and He wouldn't leave us now!

Our biggest prayer throughout Sydney's first year was that she would stay healthy and be free of coughs. And we got that! She has actually been the healthiest one in our family so far this year. We did go back to the hospital in 2013 to have her ostomy reversed and right after her first birthday for some stomach issues but she always recovered quickly.

One of the biggest changes has been in me though. I am now a mom to 3 girls that each have a medical issue/ special need and God has opened my eyes to show me how this is going to be quite a journey. A journey of learning more about God, growing as a mother, learning patience and more compassion, and  seeing each of my girls as His child first. My girls are beautiful, precious and have been formed perfectly by their creator!