Monthly Archive: October 2016

Hello Friends,

It’s been a good day at our house. We had big plans to get Kayleigh out tonight for the Fall Festival at First Baptist Hartselle. Since we knew that was going to be a large undertaking we kept things very low key all day. Making sure Kayleigh rested and save her energy was the goal.

Thankfully, the steroids have helped some and her speech was a little better this morning. They also made her incredibly hungry. I mean… WOW… She was asking for more food before she finished what she was eating. And that went on all day. The only time she wasn’t saying she was hungry was when she was sleeping! Even tonight after I tucked her in to bed, she had just polished off a steak, chips, jello and chocolate and was asking for more.

One of the fun things we do each year with all of the cousins is pick a theme and dress up. The Flintstones, Wizard of Oz, Superheros, Ninja Turtles, Star Wars… It’s fun. When we started it was the five cousins but we’ve expanded significantly. This year we have 8 cousins and Kayleigh picked the theme (Scooby Doo) and told everyone who she wanted them to be. It turned out great.

Kayleigh was excited about getting to dress up but nervous about getting too much attention. At home her disabilities don’t bother her much, but going out with so many people she doesn’t know (but know her) was scary. But as always, she was a trooper. She took pictures with people, gave out hugs and tried to answer questions – if she could hear them. Her hearing is failing significantly and her speech is slow, that makes normal conversation hard. She made it almost an entire hour before she finally allowed us to bring her home.

Finally, right before bed, we had a special visitor sneak in and read Kayleigh a story. Sweet Rory picked out the most precious book. It’s one of those times where God just worked out the timing. Kayleigh should have been asleep when they came by to drop Grace off but Kayleigh was wired and wide awake. Sometimes visitors make her a little uncomfortable, but this was her friend and it was just what she needed. A friend to sit with her. One that didn’t want to talk, she read her the story and just kept her company. I am discovering that some children just inherently understand how to help
Kayleigh – it is beautiful. Now Kayleigh’s tucked in and sleeping hard.

Would you pray with us tonight for some specific things?
For the steroid side effects to lessen
That she would sleep well
That she would not be so starving
For anxiety to ease
For no headaches
Speech to be clear
Breathing to stay strong
Complete, miraculous healing – this side of heaven – soon.

Thank you for continuing to walk the journey with us each day. Thank you for stopping us when we are out to let us know you are praying. Thank you for holding us up in prayer each day. We love you.

Until tomorrow,
‘Carrow 💜

Mystery Inc

Sweet Friends

KB’s Super hero💜

Scooby & a snack!

Grace & Gracie

Gracie,Grace& Chloe

Sweet Rory reading to Kayleigh

Hello Facebook Friends,

It has been a relatively quiet day at out house. Kayleigh slept late but woke very groggy. We spoke with our team at St. Jude and decided to increase her steroid dose quite a bit. We doubled the morning dose but left the evening dose the same. Hopefully that will be enough to help but not cause terrible side effects. Steroids are bad about creating irritability, anxiety, excessive appetite, and many other things. As the doctors tell us, finding the dose that works for her will be a balancing act.

Even after the increased steroid dose Kayleigh was still sleepy today. While sleepy isn’t the best news it made for a day full of snuggles. She napped most of the day but her speech seemed slightly better. Her appetite is nearly insatiable, so that is fun to balance. Too much food makes her sick but if you don’t feed her she is one unhappy camper!

Please continue to cover our girl with prayer. We know God is able to grant her healing this side of heaven. We also know that His plan is perfect – so we will continue to walk by faith being thankful for each day.

Psalm 103:2-5
Bless the LORD, O my soul, And forget not all His benefits:
Who forgives all your iniquities, Who heals all your diseases,
Who redeems your life from destruction,
Who crowns you with loving kindness and tender mercies,
Who satisfies your mouth with good things,
So that your youth is renewed like the eagle’s.

Until Tomorrow,
‘Carrow💜

Awesome mermaid socks 

Daddy love

October 24, 2016

6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Philippians 4:6-7

Today is one of those days where I just need to remind myself of this verse. Kayleigh did not have the best day. Her hearing has not improved and she’s still sputtering a little when she drinks. Today, she had a headache for a few hours and she has struggled to speak. To see the look in her eyes that she KNOWS what she needs, she KNOWS the words, she just can’t SAY them – it’s heart breaking. I do my best to stay calm and work out what it is she needs without upsetting her but it s difficult. When I can’t figure it out quickly she begins to get agitated and a little panicked. Would you please pray we can continue communicate well with each other? My primary concern is that she be comfortable, at peace, happy and have no pain.

Even feeling a little crummy she was able to enjoy having family visit this evening. She is really looking forward to Halloween so we are praying hard that she will have the energy to participate. The smallest things like moving from the bedroom to the living room completely sap her strength.

I know so many of you want to visit, bring food, or help in some way. You cannot know just how much we appreciate each and every one of you that have offered. At this moment we are just so focused on Kayleigh that it is hard for me to respond.

Visitors tend to wear her out, so we are being very cautious about having people in the house. Not being able to communicate well is another reason visitors are hard. She wants to talk but can’t and that upsets her. And Kayleogh being upset is the last thing we want.

As for food, we are settling in at home and have plenty of food right now. We will be getting with friends about possibly helping with food in the future. Kayleigh’s diet just makes it tricky and if she eats anything off the diet she feels terrible and has headaches so again, we are being very cautious.

Finally, as for help, we don’t have any immediate needs at this time. God is good, and He has taken very good care of us so far. I am sure we will have needs arise in the future, but for now, we are ok.

In order to help me be less overwhelmed we have some wonderful friends that have stepped in to help answer questions, be the drop off point, and allow us more time with Kayleigh and less time worried about other stuff. We trust these friends completely and know they will make sure every card, message, or gift makes it to Kayleigh.

If you have something you need to drop off in person:
Mack’s Paint & Body Shop
114 Main St. E
Hartselle, AL 35640

If you want to mail something:
Prayers For Kayleigh
P. O. Box 1772
Hartselle, AL 35640

If you need to speak with someone you can contact Heather Robinson Peebles or Jennifer Jones via Facebook. Of course you are welcome to contact our family members as well if you know them.

Thank you for your continued love and support – and for your understanding.

Psalm 91:9-12
9 If you make the Lord your refuge, if you make the Most High your shelter, 10 no evil will conquer you; no plague will come near your home. 11 For he will order his angels to protect you wherever you go. 12 They will hold you up with their hands so you won’t even hurt your foot on a stone.

Until tomorrow,
‘Carrow💜

My littlest and Calloway’s littlest  sweet cousins 💜💜

Milan liked it 💜

Playing Legos with Mommy & Gran

The big kids had fun too!

Thank you Lord for a day of rest. I had hoped we might be able to go to church but Kayleigh just wasn’t up for it. She rested well last night but woke up tired and groggy this morning. As the day progressed she woke up a bit more and was in a pretty good mood.

Unfortunately, her hearing was significantly worse today. As the tumor grows or swells or more pressure is created inside her brain we are told that this isn’t uncommon. Because all functions run through your brain stem many things can be effected. It just depends on where it is pressing. Kayleigh has some double/blurry vision as well. I also noticed a little more sputtering when she drank today. And she’s been a little sleepier. All things that continue to point to this blasted tumor.

We continue to ask for a miracle for our girl. Praying, believing that God is able. Asking that He will see fit to heal Kayleigh completely, this side of heaven. Each day we see her decline it would be so easy to lose hope. Yet, God is good and continues to grant us peace each day. Peace that He is in control, that his plan is perfect, and that we can trust Him for each step.

I must say, as a mother, it doesn’t remove my fear, the fear that He will say no to my prayers. But it allows me to face each day with hope, trust and faith. Depending on the Holy Spirit to guide me and intercede on my behalf when I just don’t have the words to pray.

Please pray with us for a remarkable miracle. For complete healing this side of heaven. For her hearing to return and vision to be clearer. For the tumor to get smaller.

Even though this road is tough, we choose joy. Thank you for standing with us.

James 1:2-4
2 Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Until tomorrow,
‘Carrow💜

Halloween about 4 years ago

What a beautiful day today has been. Precious friends hosted a benefit softball tournament in Kayleigh’s honor. Kayleigh wasn’t up for leaving the house today but Tim and I were able to go for a little while. I can’t tell you just how moving it is for us to see such amazing support. Hearing how Kayleigh’s story is making a difference in people’s lives helps us understand why God is allowing us to walk on this path.

Even though Kayleigh wasn’t up for leaving the house today she was able to visit with family for a little bit. She also asked for a specific Lego, so Daddy made sure we came home with that this afternoon. Unfortunately, she no longer has the motors skills to build it herself but she is an excellent supervisor. So she reads the instructions and I build. It’s fun for both of us.

Now that Grace and Cole are up to speed I can share a little more about Kayleigh’s condition. At this point, our medical team has no options remaining for Kayleigh. At least no options that will stop or slow down the tumor. She is on the wait list for another trial, but honestly, they know this medicine won’t cure this disease. They estimate Kayleigh could perhaps get on the trial by the end of November, but based on how fast this thing is growing and how aggressive it is, that will probably be too late.

So, here is our plan…
Hospice has been called in to make our home a safe place for Kayleigh. We have medical equipment to take care of her in nearly all situations, her nurses are wonderful and available 24/7, and everyone is on the same page that we will keep her comfortable and happy. Meanwhile, our offense will be prayer, diet, and an overall holistic approach. Thankfully, none of those things make her feel bad, and we have seen these help in the past, so it’s a win-win. Of course, the only answer for this is prayer. That is the only way she beats this. So please, continue to pray with us.

Proverbs 3:5-6
5 Trust in the Lord with all your heart; do not depend on your own understanding. 6 Seek his will in all you do, and he will show you which path to take.

Isaiah 41:10
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.

John 16:33
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”

Until tomorrow,
‘Carrow💜

This is what it’s all about