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

Just In Case You Were Wondering...

Yes, we’re still alive and kickin’. It’s been quite an eventful month and the past 2 weeks have been full of appointments and best of all, MILESTONES!!

...Waiting to go into surgery...

First of all, Austin’s Adenoidectomy went really well. He also had tubes put in his ears. You would’ve never known he’d had surgery, but he did have a fever last week due to some sort of virus.

Austin had a swallow study today. We had to go Downtown (Dallas) to Baylor of Dallas Hospital. We had a really nice Speech Therapist who evaluated Austin. He drank out of his straw cup like a big boy! Based on the swallow study, everything looks okay. No aspiration, which is good. However, she did notice that liquid and food sometimes gets “stuck” in the pockets. Don’t ask me what this means, because it’s definitely not my specialty. Apparently, he gets the food out of the pockets on his own. This might explain why he doesn’t want to take a lot of his bottle at once or even at all. All of this has to do with the low tone. He will eventually build up his oral motor muscles, but for now she recommends Speech/Oral Motor/Food Therapy. So, I guess we can add another therapy to our list. I’m all for it! Our schedule is super busy and it seems like we’re always going. The speech therapist also recommended weaning completely from the bottle. This will be easy because Austin’s basically weaned himself…he does still get a bottle at night though. That will soon be replaced with a sippy straw cup of milk. Oh, what will I do with all the extra counter space once the bottle rack is retired? The possibilities are endess ;-)

In addition to Occupational Therapy, we’ve started Private Physical Therapy at Children’s on Tuesdays. This means that Austin is receiving Therapy twice a week, which is awesome.

As most of you know, I’d been very concerned with the fact that Austin wasn’t sitting independently. He would constantly arch his back and “fling” himself back. I’m happy to say that Austin is officially an independent sitter. I can leave him in the sitting position and not worry that he’ll “fling” himself back. He’s also able to get into the sitting position on his own when I put him on his tummy and vice versa. How did this happen? Well, I started sitting in front of him, instead of behind him. It turns out, he’s not interested in flinging himself back when no one is there to catch him.

...sitting like a BIG boy at our Mommy and Me Class...

The Milestones keep coming…he is also drinking from a straw! Like I said earlier, bottles are about to be a thing of the past.

Austin has been having episodes of his body going almost stiff and crossing his eyes. They only last for a matter of seconds. I wasn’t sure what to think…but my mom brought up the fact that it might be seizures. I spoke to Dr. C about it and she said it could just be a behavior or it could be a seizure. She referred us to a neurologist and they worked us in for a Sleep Deprived EEG on Wednesday. In case you’re not familiar with what a Sleep Deprived EEG is, let me fill you in. Basically, they want Austin to sleep during his EEG. Therefore, they recommend no more than 4 hours of sleep the night before. I laughed out loud when I read that. First of all, if Austin’s tired, there’s no such thing as keeping him awake. He’ll sleep anywhere. I can’t distract him with video games or other activities like I could with an older child. I’m just going to keep all the lights on and try to keep him up as late as possible on Tuesday night and wake him up extra early on Wednesday morning. Don’t ask me how I’ll keep him awake on the ride over there…it’s about 20 minutes away. This should be interesting, to say the least. I’m hoping these episodes are simply a behavior and not related to some type of seizure. That’s scary.

Austin’s annual thyroid test came back a little high, but not too terribly high. Dr. C referred us to a Thyroid Specialist at Children’s to get it checked out. We have an appointment next week. This comes as no surprise because Thyroid issues are common amongst children with Down syndrome. I’m just thankful it wasn’t alarmingly high, so I think they’ll just retest and go from there.

It’s nice to finally sit down and update. I feel like I’ve been neglecting this poor blog. Today is National Down syndrome Day! It’s a wonderful day to remember how thankful we are for that extra chromosome and all the beauty and goodness it brings.

“Because of you, I love a little more. Because of you, I take time to give an extra hug goodbye. Because of you, I live today, before I worry about tomorrow. Because of you, I will fight harder and longer for what I know is right. Because of you, today, I am me”

Here’s a FACT (one of my favorites) :
There is a wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents. In other words, people with Down syndrome are not all the same; just like individuals in the typical population are not all the same.

“Having a child with Down syndrome is like taking the scenic route. You still get where you are going. It may take a little longer, but it will be well worth the trip!”

Beautiful Encounters

We’ve been busy lately and our calendar of events doesn’t look like it’s slowing down anytime soon. Last week Austin visited the Pediatric Cardiologist . She determined that Austin will, in fact, need surgery to correct the 12mm hole in his heart. They might be able to go through his leg to correct the hole, verses having open heart surgery. The right side of his heart is enlarged due to the hole. The good news is: the hole doesn’t appear to be affecting him or his growth. Therefore, we’re able to wait until he’s 2 years old for surgery.

Speaking of surgery, Austin’s having surgery on Friday. He’ll having his adenoids removed and tubes put in his ears. My mom is flying in on Thursday, so I’ll have a lot of help (Thank GOD!)

Austin had a sonogram to check the status of the swelling of his kidneys today. We had this procedure done at Medical City, which isn’t a Children’s only hospital. While we were waiting in the registration waiting room, a man and woman walked in. The man looked at Austin and stopped in his tracks. Thankfully, he smiled and looked at me and said, “ I have one of those, but he‘s 21.” I was hoping he meant a child with Down syndrome…then he showed me a picture on his phone… On the screen was a smiling young man with Down syndrome. The man went on about his business. About 20 minutes later, I noticed the woman sitting next to me smiling and talking to Austin. She asked me how old he was and if he was mine. Then, she told me that she had a 25 year old son with Down syndrome. She showed me pictures of him with his baby nephew. He looked so proud and I was thankful she shared the pictures with me. It’s times like this that I’m especially thankful for Down syndrome. I wouldn’t have these beautiful encounters if Austin didn’t possess an extra chromosome. Yes, we were at ANOTHER appointment for something related to Down syndrome. And yes, it does weigh on me at times…but meeting others who know the joy that extra chromosome brings takes away all those feelings of despair.

Today I needed to be reminded how blessed we truly are…And I was.