Tuesday, March 29, 2011

Results and Plans

Last week was entirely too crazy and I think I’m still recovering. We did have a lot of fun though, but I’ll get to that in a second.

First of all, we completed the Sleep Deprived EEG. The Neurologist’s office didn’t exactly give me a lot of information concerning this procedure. Austin only had to sleep for 30 minutes, which was a piece of cake! Had I KNOWN that, I wouldn’t have kept singing in my annoying opera voice the entire way to the hospital that morning to keep Austin awake. My poor baby, all he wanted to do was sleep.

The results of the EEG came back good. No seizures. Thank you, God! Our next neurological procedure will be next Monday. The MRI. While this is mainly being done to rule out anything serious with Austin’s eyes, they will also be looking at his brain. Austin has Choroid Plexus cysts on his brain. According to his neurologist, they are harmless and mean nothing. However, she still wants to get a good look at them. If you don’t remember me talking about these cysyts, here’s a refresher: Choroid Plexus cysts are often found on babies in the womb. They can be found on genetically “normal” and genetically abnormal babies. They almost always go away by the 3rd trimester. What do they mean? Well, nothing, really. I wish there were a better answer, but that’s the only one I’ve received. Apparently, the Choroid Plexus cysts on Austin‘s brain decided to throw a curve ball and as far as we know, they‘re still there…they could go away on their own or not. What good is that they’re really nothing to worry about, but in all honesty, I’d much rather them disappear.

I’ve made a lot of friends through the Baby Center message boards. Of course, we all have children with Down syndrome and that links us. Some of them are local and some are not. I was lucky enough to meet one of my friends, Jenn, and her sweet baby girl, Abby, last week. Jenn came into town to visit some family, so we were able to get together last Thursday. Abby is about a month younger than Austin. She and her mommy are both beautiful and I can tell you there was an instant bond from the moment we met. Not to mention, Austin and Abby are SO cute together. I mean, ridiculously cute!

Austin had an appointment with the endocrinology Clinic for his thyroid results. Now, obviously, I don’t have a medical background. Basically, Austin’s actual thyroid levels are functioning within a normal range. The area in his brain that controls his thyroid was just a little high. The doctor decided to test his thyroid levels again and he assumed they would probably come back abnormal. He explained to me that Austin would have to be on a low dosage of medication. No biggie. Well, the doctor called me this morning and Austin’s thyroid blood work came back normal. So, no medicine for now. We’ll follow up in 6 months, but this is good news! We also saw the kidney doctor yesterday. I know, we’re super busy people. Anyway, based on his kidney sonogram, everything looks good! I’ll never get tired of hearing good news from the doctors.

As we were entering the building at Children’s yesterday for Austin’s appointment, I noticed an older boy who looked to be about 10 years old. He immediately came running toward Austin. I wasn’t sure what was going on, but before I could say anything he caressed Austin’s faced and kissed him on top of his head. Sure enough, this little boy had Down syndrome too. My heart immediately melted. It’s times like those, that I wish everyone could experience the joy of having a child with Down syndrome. Yes, we face extra challenges that most can’t begin to comprehend. But we also experience a love in our hearts like no other. Our children are forever innocent and that is truly the best gift of all. In the beginning, I wasn’t sure God knew what he was doing. Why us? I didn’t understand his plan. Now that we’re 13 months into our journey, I get it. I see the bigger picture and I feel completely gracious and thankful that he chose us to be Austin’s parents. It wasn’t by chance, but by plan. And God’s plans are always perfect.
“For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.”
 - Jeremiah 29:10-12


  1. I can't get over how cute Austin is!!! I will have to try your opera singing technique!!!

  2. Hey chica! our endocrinology appt experience sounds identical!! Grady has the same issue, his levels are within the normal range but the hormone production mechanisms levels were 7.9 (high). we are waiting on results but most likely no medications for now! PTL!! Im loving your Austin as usual. When are you all coming to NY? xoxo

  3. saw in your profile that Austin has a rare form of DS? Transposition or Mosaic? my daughter has mosaic and I have yet to talk to or meet anyone else who has that form.