Busy Week

In the last 8 days, Beckett saw a doctor on 4 seperate occasions. That's a total of 4 waiting rooms with a toddler (and sometimes a preschooler)and 4 panic attacks (well, not really...but tears were shed) for my little guy. In addition to those 4 appointments, we also squeezed in a visit with the home health nurse, his ECI case manager, his developmental therapist, and his speech language pathologist. And finished the week off with a quick trip to the lab at the hospital downtown. And we somehow managed a parent-teacher conference at Brant's school, as well as baking and taking cupcakes to school to celebrate Brant's birthday--which isn't until the summer, but we wanted to get to celebrate at school! Whew! What a week!

Here's the big update: at the end of the week, the doctors decided to let Beckett try the next two weeks without his feeding tube. Yay! This all started when he realized that he could pull out his own NG tube! And the result of pulling out the tube for a congested toddler? Easier breathing! So he got that figured out, and I knew it was going to be hard to keep that sucker in! After some discussion, our pediatrician and GI decided to let Beckett try out the next couple weeks without the night time continuous feeds. I am so very thankful that his feeding tube was able to help him grow and give him some extra energy to learn new things.  Most people who have known him and see him now comment on how good he is looking.  But, we are hoping that now that his enzymes are well established (and seem to be helping greatly with his digestion!), he will be able to gain and maintain his weight without the tube. We are excited about this step! Putting him to bed seems so simple now.  I think I appreciate things that I never really thought to appreciate much before...like the idea of wearing footie zip-up jammies without having to cut a hole and figure out where the tube is going to come out.  Sometimes, it's just the little things, ya know?

And the slight downside of the week: his bad virus turned into an ear infection (even with those tubes!) and sinus infection. Sooo...back on antibiotics. No biggie really. Just wish that he could catch a break from all the little infections.  It tends to affect his tummy when he has to be on antibiotics.

Beckett has been feeling a bit under the weather lately, but he is such a trooper. He is so tough and I am so proud of him! He is learning new things and has started saying "mama" regularly. It is such a sweet word! I love it, and am so thankful. He slightly over generalizes and calls other women, "mama" but I am still thrilled! When we go to the grocery store, he waves his hand at everyone he sees. He is very friendly and outgoing. He tends to make everyone around him smile- even with a runny nose!

Thanks so much for checking on Beckett and for praying for him. We appreciate your prayers. He seems to be doing all-around really well these days, and we are so thankful for that!

~Kaylan

Happy Easter!

Brant took his egg hunting very seriously this year!He didn't want the egg; he just wanted up! I don't think he was very interested in the egg hunt.
Beckett got one!

Beckett just choosing to step over the egg. Who needs it anyways? Can you tell who got the most eggs?

Not easy getting them all to look and smile! The boys with their little cousin!

Handsome man!

Getting a picture of both of them together is very tricky!

Sweet Beckett!

We had a wonderful time celebrating Easter with family. The boys enjoyed multiple Easter egg hunts...Well, Brant loved hunting for eggs; Beckett really didn't see the point in it! He just tended to walk right by even the most obvious egg. Ha! We had yummy food and good fellowship. But really, we know that Easter is not about the bunnies, the plastic eggs, or the fancy new clothes. We enjoy having fun as a family and watching the kids' activities. We enjoy good visiting and yummy treats. But for us, as Christians, Easter is much bigger. It is to celebrate our risen King. I do not know how I would go through this life on this earth without the hope I have in Christ. Without my comfort in the cross. My comfort in knowing that Jesus suffered on the cross, felt on the sufferings of this earth, so that I could spend forever worshiping God in heaven. My hope in knowing that I have a Jesus as my Savior. My comfort in knowing I do not have to fight the battles of this earth alone. And my comfort knowing that the struggles on this earth are temporary, and that glory in Heaven is eternal.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9

Thank you God for sending your Son to die on the cross to save me so that I can spend eternity in heaven with you. Thank you for loving me. Thank you for the hope I can have in knowing Christ as my Savior. I am so thankful that this world is not my home.

I absolutely love this song and the message of it. Praise be to our God who is mighty to save.

Mighty to Save by Hillsong

My Saviour, He can move the mountains,

My God is Mighty to save,

He is Mighty to save.

Forever, Author of salvation,

He rose and conquered the grave,

Jesus conquered the grave.

Shine your light and let the whole world see,

We're singing for the glory of the risen King...Jesus

Health Update

Late yesterday afternoon, we had to take Beckett to the local ER for fever, lethargy, and heavy breathing. Even after 2 doses of medicine, his fever was 104.5 upon arrival to the hospital. A chest x-ray confirmed that he has bronchiolitis. We were released from the hospital late last night because we have the ability to keep him hydrated due to his NG feeding tube. (Another hidden blessing of the tube, I suppose.) We are able to put clear pedialyte through the feeding tube all night long with his pump. We also conveniently enough already have a nebulizer. So the doctor told us that if that became necessary, we could simply use the equipment and meds that we already have. We were free to go home. I was so thankful to put sweet Beckett to sleep in his own little bed, and I know he was happy to be there.

This morning we took him into the pediatrician for a follow up visit and to check his lungs. Thankfully, I was able to get Brant checked out too! (He is having a little trouble with his allergies, but he is well.) Beckett's lungs sounded coarse today, so they did a breathing treatment at the office. They also drew blood to check his white blood cell count.

Brant watched as they drew the blood and set up the nebulizer, and he looked a bit anxious. But then he got a strong, proud face, and said to the nurse, "you know, I am the big brother." It was a sweet moment for me as I got to see the love Brant has for "his baby--the best baby in the whole world."

The white blood cell count was actually very low, so it seems to be viral in nature as opposed to pneumonia. The pediatrician prescribed breathing treatments every 6 hours. We are just to watch him closely throughout the weekend, continue pumping pedialyte through him, and do the breathing treatments. They gave me things to watch for that would send us back to the hospital pronto.

It is amazing how quickly little children can get sick. All in a matter of a couple hours! Thanks for all the prayers last night. We really appreciate them. Please continue to pray for Beckett as he still has high fevers and does not feel well. We are praying that this doesn't become pneumonia, and that he is able to fight the virus off quickly. Please also pray that Brant does not become ill as well. Thank you so much for checking on us and for your prayers.

~Kaylan

My Boys

Because sleepy pictures are just so cute... (Brant and Daddy went shopping. The result was a new best friend, "Monster Truck.")

Beckett at naptime...He played hard this morning. :)

Now doesn't this just melt your heart? Love my boys!

Jesus Heals a Man Born Blind

Before bedtime, Brant and I will often read stories out of his storybook Bible, The Beginners Bible. We have read that book cover to cover several times, and it is actually falling apart. my prayer for Brant is that he will continue to have this desire to learn about God and His Word. Here is a story from The Beginners Bible that replays in my head:

Jesus Heals a Blind Beggar
John 9:1-12

Jesus and his disciples saw a blind beggar. He had been blind since he was born. The disciples asked Jesus, "Teacher, did this man sin? Or did his parents? Is that why he is blind?"

"No one sinned," said Jesus. "This happened so that God's work could be shown in his life." Then Jesus spit on the ground and made mud out of it with his hands. he gently spread the mud on the blind man's eyes.

Then Jesus told the man, "Go to the Pool of Siloam and wash off the mud."

As soon as the mud was washed off, the man could see! Everyone was amazed. They wanted to find out more about Jesus.

This is a very abridged version of John, chapter 9, but each and every time Brant and I read this story, the line strikes me..."This happened so that God's work could be shown in his life."

I think anyone who is struggling may wonder, "why?" And there it is, "...But this happened so that the work of God might be displayed in his life." John 9:3

I think suffering is a part of living in a fallen world, and God can use even the suffering to display HIS work in our lives. It somehow figures into the sovereign purpose and plan of God.

That takes away some of the fear and the what-ifs of it all. Whatever it may be, the work of God can be shown in his life...and the last line of the story, Everyone was amazed. They wanted to find out more about Jesus...

I cannot for a minute think that Beckett's struggles (and i recognize that there are others with much bigger struggles) in his 1.5 years have been for nothing. I must believe that it is to show the work of God. Our God is bigger. Our God has an amazing plan for Beckett, for Brant, for our family. I will share something else about what God has done for Beckett soon. He is at work here, and He is at work half way across the country. Everywhere.

This is amazing. This is our God. I will try to get to the point quickly.

Throughout the last year, I have met other parents who have children that struggle with similar health problems as Beckett. Most of our children all have different diagnoses or are undiagnosed, but we all have children who struggle with digestion and landed at Cincinnati Children's Hospital. One teenage girl calls it, "intestinally challenged." I think that as humans we have a need to find others like us...basically, to run in a pack. We don't want to feel alone in our fights. And when you are putting tubes in every which way of your child, it can be easy to feel alone and long to meet other people who just "get it." This is a special need...a unique one. But yes, it's a special need. One of the mothers that I met this year has a daughter close in age to our Beckett. We very quickly formed a unique friendship. She lives in Ohio. Here is her story tonight: (for the full post and to read more about this family's journey and prayer requests, please click here: http://answersforaddison.blogspot.com/2012/04/welcome.html
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So first and foremost, welcome to the blog. I am beyond touched at the number of people my rambling thoughts have had the power to reach. I never imagined when I started it, that we would be anywhere near where we are today, but what a testimony! God has been walking with us, nurturing us to prepare us for this journey since long before we were even a family. For those who have shared the page with their friends and family in order to lift us up in prayer, it means so much to us. I have been in awe that total strangers would repost our prayer request or ask their church community to pray for a tiny baby 10 states away who they will never know.

On with the story:I am a part of a support group of parents whose children are bound by one unifying factor, we all have kids with serious medical issues that led us to a single place: Cincinnati Children's Hospital. These wonderful, strong people (as well as our SNaMCK family) have acted as our cheerleading squad time and time again. Only a handful of us have ever met in person, and of those, most took place for 10 minutes in a hospital cafeteria between appointments. There is an amazing sense of camaraderie among us despite varying diagnoses and outcomes.

I got a message tonight from Suzanne, one of the parents in that Cincinnati support group, saying she had been called to pray tonight in SOUTH FLORIDA for one little babygirl.... named Audrina Dick in Ohio. This brought tears to my eyes. Someone, somewhere, cared enough to pray for a stranger's child. And then they told someone, who told someone, and now those who lift our family in prayer are running into others who do as well. All of this, over 1000 miles away.... I'm simply in awe. And for that story to get back to me, just totally warmed my heart on this day of struggles.So again, welcome and thank you for taking the time to join us on our journey. Please feel free to repost, share the link, and comment as you wish. Writing this is my 'therapy' and we welcome your support and guidance. If you want to learn more about our family, click on the Chasing Zebras tab to read the condensed version of our very blessed life for the past year and a half.

In faith,Kim
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Our God is huge. People across a nation lifting up a child in prayer. And it getting back to the mom to encourage and comfort her when she is feeling down and overwhelmed. He's awesome. He's holding them in his arms.

The work of God is being displayed. Everywhere. And all around us. Even in the suffering.