New Tubes and Normal Hearing!

Caleb had his fifth surgical procedure yesterday. Compared to heart surgery, though, this one was pretty minor. He got his second set of ear tubes placed and had an auditory brain stem response (ABR) test done. The ENT told me after surgery that the right tube had fallen out, but there was still a small hole in the ear drum that was letting fluid drain. The tube in the left ear was blocked, and there was a lot of fluid trapped in Caleb's ear. After the new tubes were placed and the fluid was cleared out, an audiologist did the ABR. Caleb's hearing tested normal for all ranges! That was amazing news and a huge answer to prayer! 

Last Day of School

Friday was Caleb's last day of the spring semester at MDO. His program is year round, so he'll start the summer session in a couple weeks. But since everyone else is celebrating the "end of school" right now, I figured we should "celebrate" too!

First day of MDO - August 19, 2013

Last day of MDO (spring semester) - May 23, 2014

Circus Minis

Missy with Limelight Photography took these photos of Caleb last month. She had set up a circus-themed photo shoot, and the photos turned out so cute!

The "P" word

Caleb's ear infection isn't clearing up, so I took him in to see his pediatrician this morning. She prescribed a stronger antibiotic, and she also checked out a rash that he has had on his back for the last few days. The pediatrician we saw on Saturday thought the rash was probably caused by a virus. Caleb's pediatrician agreed, but there were a few other little red spots she was more concerned about. She said the word I didn't want to hear... the "p" word... petechiae. I've educated myself on all things Down syndrome over the last eighteen months, so I know that petechiae can be a sign of leukemia. It can also be lots of other things, but that's the one my mind instantly went to. Kids who have Down syndrome are 20 times more likely to get childhood leukemia. I was terrified. I started crying. The pediatrician told me that it might be related to Caleb's virus and that we shouldn't worry yet, but I think she totally understood why I was already going there. She sent us to the lab for a CBC and requested that they "rush" the results. 

So what's petechiae? They are tiny red spots that are caused by broken capillaries under the skin. The Mayo Clinic has some good info on what causes it and what all it could indicate... http://www.mayoclinic.org/symptoms/petechiae/basics/definition/sym-20050724

After a couple tear-filled and prayer-filled hours, the nurse called. Caleb's platelet count is normal. His white count is low, but that could be because his body is fighting the ear infection. Caleb will have another CBC done in a month when he's feeling better.

I heard Citizen Way's song "How Sweet The Sound" on the radio when I was waiting for the results. One of the lines in the song is from Psalm 23:4... Even though I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me. 

I am so thankful that we've avoided this "valley" for now. I'm even more thankful that no matter what may come our way, I have a Savior who will always protect and comfort me.

Ear Infection

Well, getting Caleb's tubes procedure is top priority for me now! Caleb got his first ear infection on Friday. He was a restless sleeper last Thursday night and then was very sleepy before and at MDO on Friday. He fell asleep very early on Friday evening and woke up at about 1:00 early Saturday morning with 102 fever. After a dose of Tylenol, he slept the rest of the night. I took him to the pediatric after hours clinic Saturday morning, and the pediatrician said he had an ear infection. I suspected that he might, so I had already started him on the ear drops that the ENT gave us to use as needed. The pediatrician prescribed an oral antibiotic and told me to continue with the ear drops and Tylenol. Caleb felt pretty lousy on Saturday, was a little better on Sunday, and seemed back to his normal self this morning. About an hour after getting home from MDO, he started fussing and his temp started going up. I feel bad that I sent him to MDO today, but he seemed fine and hadn't had a fever for over 24 hours. Maybe a good night of sleep and a day at home tomorrow will help.

I got a call from the ENT's scheduler this morning with a tentative procedure date of June 18th. It can't come soon enough!

My poor little guy at the after hours clinic on Saturday

We did lots of this on Saturday and Sunday. I hated that he was sick, but I loved the snuggles... and I cleared out my DVR.

Pulling Up

Check out Caleb's newest trick! When sitting on his stool, he can now pull up to his train table!

Another set of tubes

Well, so much for not having any surgeries/procedures on the horizon. 

Caleb's audiologist mentioned a couple weeks ago that she thought one of his tubes had either come out or was blocked. She suggested I make an appointment for Caleb to see his ENT. We met with him today, and he said that the right tube is either gone or blocked. He couldn't tell which. The left tube is still there, but it's probably blocked. So... Caleb needs new tubes. Since he'll have to go under anesthesia for the tubes placement, he's going to have another sedated ABR done at that time. 

The person who schedules the procedures is out of the office this week, but she's supposed to call me when she returns next week. I expect that the procedure will be done sometime in June or July.