Just a quick update on the 3 appointments we had today. Today’s appointments were “fun” appointments as we tell Caleb. That means they are appointments where he doesn’t have to get poked, or go to sleep, or do anything unpleasant.

We started our day with a follow up with the Neurology department. This doctor is different than his specific brain tumor doctor. He examined Caleb briefly and we spoke about the seizure medication that he is on. The doctor said he’d like to keep him on the seizure meds for at least a year post surgery (August 31st). Even though Caleb has shown no signs of any seizure activity there is a lot going on in the brain and he could still be at risk. Since there is really no adverse effect of being on the medicine we will keep him on it until August at least.

Our next appointment was Occupational Therapy. This appointment tests his fine motor skills and she had him do things like stack blocks, string beads on a shoe lace, color, draw shapes, cut with scissors, and throw and catch a ball. He passed all tests with flying colors. He didn’t even know he was being examined he just thinks he’s playing in these appointments which is the best part. It definitely amazes me that a person can have part of their brain removed and go through all he went through and really have no side effects. I will never take stop thinking about how remarkable that is and I look at him in awe and wonder every day.

After this appointment we had about an hour break for lunch. Caleb was very specific about what he wanted today… Pizza with extra cheese and grapes, blueberries, and strawberries. And to drink, an orange juice in the bottle. He ate like a king in his wagon with his iPad and food ha ha!


Our last appointment of the day was Speech. They evaluated him in the same categories as last time and he scored even higher this time. They started out with picture recognition, and then asked about pictures where he has to describe what people are doing (like riding a bike, crying, etc.). The last part of the test he had to point to objects in the order that she told him to. For example, point to the large monkey and then the small cat. So it’s kind of just testing how well he recognizes and remembers things. He scored in the high end of the average range. Again, I’m so very proud of him and thankful every day that we have not seen any adverse effects in his learning. There could still be long term effects from the radiation that we are told could take 6 months or more to see, but so far this little guy amazes me every day. He says things that are so funny and is very observative. He soaks in everything around him like a sponge.

So, now we just wait for Tuesday to roll around so we can get another blood count in the morning and check in for our inpatient stay Tuesday night. I’m not looking forward to this of course, and even more so I have to try to figure out this weekend how to tell Caleb that we have another hospital stay coming up. I know he’ll go along with it and be good, but it’s not easy to tell him he’ll be cooped up in a hospital room for 4 days while we give him drugs that will make him not feel good. Of course we always make things sound positive when we talk to him, but it’s not always easy. I know we’ll get through it though. More updates next week!

4 thoughts on “FUN APPOINTMENT DAY

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  1. You have one incredible little boy & he is blessed with amazing parents! What a journey you are on! Thanks for sharing so we can pray specifically for your little Super Hero and for you! God Bless you!! (I’m ‘Grebby’s’ friend)

  2. This saddens me all he has to go thru and endure but I am soooooo proud if him and his bro. God bless u all!!!❤️❤️

  3. Not sure you remember I am Linda Burdine and a friend of your amazing mom Eve in the Groves. Wanted to begin sending you some encouragement quotes to help you through this journey God has set you on. “SOMETIMES things happen to us we don’t understand. These things SOMETIMES become the doors and windows to our destiny.” by Andrea Nugent. I believe God is using you to encourage millions who are not as strong or positive dealing with children with illness. Your family has so much faith and hope. No one who follows your story could fail to be inspired. Keep fighting the good fight and know many, just like me are pulling for you and more importantly praying for you daily. You can win this!

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