September 29, 2016

Additional Update 3:25 am (technically 9/30)

The stomach bug has hit our house. Grace first. Now Kayleigh. Needless to say, vomiting on top of her terrible belly pain is not pleasant. I am praying that while this was not ideal, maybe it has purged her system and she can start with a fresh tummy slate.

Please pray for the vomiting to cease and for the other end to stop as well (how does one word that delicately???). Unfortunately, I’m not feeling so hot but praying I will not catch it. Prayers are appreciated that Tim and Cole can avoid it as well.

I am hopeful it is done. However if it is. It I will update and ask for prayers. So no news is good news today. I will write again tonight.


September 29, 2016

I was so looking forward to posting good news tonight. And I guess it is some good news, but I’m impatient and wanted lots of good news.

Kayleigh and I spent the morning in Huntsville. We started with a fitting for her we brace. Because her right side is weaker it is hard for her to walk. She is beginning to trip over her toes more often because she can’t pick them up when she walks. She also wears out quickly because it takes so much effort to keep her toes up. The brace should make that easier and hopefully make movement easier.

Our second appointment was with s pediatric cardiologist. One of the chemos she is on has had heart issues in the last so they monitor her regularly. At St. Jude she had an EKG every week and an echo once a month. Today’s Doctor checked her out and said everything looked good – yay!

Finally, after our appointments I remembered a friend had mentioned a bakery in Huntsville that made gluten free goodies. I did a quick google search and found the address was only a couple minutes from the hospital so we went to check it out.

Not only was the entire bakery gluten free but everything was well marked so it was easy to find things Kayleigh could have. We bought one of everything and sat down to our own tasting buffet. I was actually a little hesitant because I know food hurts Kayleigh’s stomach so much and she already had a stomach ache. She woke up with one. But we tasted everything and guess what? It didn’t make her stomach hurt worse! Now, it didn’t make it feel better either but for the first time in 6 weeks she was smiling when she finished eating. And I might add that everything was pretty darn good!

I do wish you could have seen her telling her daddy about getting a cupcake. She was so happy to get something normal. Sadly, the happiness would not stay. About an hour after our snack her stomach started hurting again – badly. My guess is the sugar in the snacks. Because Kayleigh did not show restraint. And she paid for it all day.

It so difficult to see hope around the corner but not be able to reach it. I saw my girl for a little bit today and it was beautiful. It was just entirely too brief. Yet while I could choose to dwell on being sad I have to remind myself that it isn’t worth it. I don’t want to ruin a single minute of the good by being sad. So, I will treasure those brief minutes where my girl’s personality was on display and say thank you to the Lord for allowing me to see it.

Luke 16:10 keeps coming to mind
“If you are faithful in little things, you will be faithful in large ones. But if you are dishonest in little things, you won’t be honest with greater responsibilities.

I pray the Lord will find us faithful in these little things. Faithful to praise Him for every moment. Faithful. That he will choose to bless us with larger things!

Until tomorrow,




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