I’ve always heard parents say that a vacation isn’t really a vacation when you have to take your kids. Families that have children with special needs understand that all too well. That’s why this summer we went back to Joni and Friends Family Camp! Five days and four nights of respite and fun… with the kids!!

We absolutely love this camp and the JAF ministry. From 9 am -3 pm every day, Kevin and I get a real break. After breakfast, the STMs (short term missionaries) take our kids for fun activities with other kids their age so that Kevin and I can participate in the adult activities. If we don’t want to do the adult activities, we can hang out in the pool or just go back to our room and sleep! I’m 36 weeks pregnant, so we spent more time napping and swimming because horseback riding and hiking might have sent me into labor!

In the evening, they have family activities that we can do with our kiddos and later in the evening they have special events, like the dance, the talent show, and the shaving cream/water balloon fight. We had so much fun this year and we truly were sad to leave. Here are some of our camp memories we’d like to share with you guys…

When you arrive at camp, you get to meet your STMs who will be working with your kids all week. Gideon’s STMs were Caitlyn and Taylor. They are PT students at Hardin-Simmons University. Gideon loves them! And so do we!!

At the dance, Gideon hung out by the speakers. The louder the music and bass, the better.

They had face painting and balloons at the dance as well.

The shaving cream fight is always a good time. On this evening of camp, they feed the parents a fancy candle light dinner and then draw back the curtains just as the kids are attacking each other outside. It’s pretty awesome to watch. (Gideon doesn’t participate in this because I’m confident he would hate it.)

The lakeside activities are Laynie’s favorites.

Gideon, on the other hand prefers the pool. He went almost every day of camp because his STMs are awesome!!

Gideon didn’t ride a horse this time around because it was way too hot outside. As you can see, he still had fun.

To say we had a blast would be an understatement. We love family camp!! The people involved here really are the hands and feet of Jesus to us weary and worn out parents.

If you have a child with a disability (or an adult child with a disability) you need to look into going to a Joni and Friends Camp near you. It’s worth every single penny! Check out their website, by clicking  HERE.  Also, they are always looking for volunteers!

Stay tuned for some special stories about camp…for now I’m off to sleep in my own bed!

After Gideon began having seizures several weeks ago, we started him on steroids with the hopes that if we treated his emerging adrenal insufficiency then we would see a decrease in his seizure activity. When that didn’t happen, we tried different doses. Then a couple of weeks ago we decided to start him on a CBD oil made by Charlotte’s Web. With that, we have seen some changes in his seizure activity. Instead of happening every day, we’ve noticed they tend to happen about every other day. Therefore, we are still working on finding the right dose of CBD oil with the hopes that will do the trick for his seizures.

Unfortunately, since the seizures began we’ve noticed more bruising on his legs. Gideon has always bruised like a peach, but not this much. Since he doesn’t walk or crawl, this excessive bruising seemed very unusual to us. At first we assumed he was just being rough with toys, but last week they looked so bad we decided to take him to the pediatrician.

The doctor said she was concerned that the bruising was due to low platelets. She did a Complete Blood Count (CBC) test and his results came back at 135K. (I was told normal for Gideon would be around 250K). Then yesterday we went back for a follow-up and his CBC results were at 107K. Because the numbers went down again the pediatrician referred us to a hematologist at Medical City Dallas. And that is where we went this morning.

We saw Dr. Goldman in the pediatric oncology department. (We absolutely LOVE him by the way!) He looked Gideon over and drew some blood for his own testing. His CBC results came back even lower at 82K; however, the test showed that there could have been an error due to platelet clumping. He told us that he had some more tests to run and that his office would get back with us as soon as they had his results. Needless to say, we are still waiting. I’m guessing we won’t know anything until next week.

Dr. Goldman did say he was encouraged because Gideon’s other numbers looked normal, which suggested to him that Gideon might be dealing with something called Thrombocytopenia. That’s a fancy word for low platelets and that’s pretty much all we know at this point. We aren’t entirely sure what is causing Gideon to have a low platelet count yet; hopefully we’ll know more by next week.

In the mean time, we aren’t getting caught up in the “what if” game. My husband loves to call me chicken little and remind me that we’ll cross any scary bridges if and when we get there. For now our little boy is happy and mostly healthy (given his terminal diagnosis).

If Gideon can be happy in the midst of all this, then I can as well.

https://www.youtube.com/watch?v=9ETnvyY1dRM

Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-8