Wednesday, April 29, 2009
Sunday, April 26, 2009
Last Monday I had my very own mini-play group here at our house. Yippee, right? But wait, listen to this. This wasn't just any ol' playgroup. This group consisted of 4 Little Ones (including Dylan), all the same age, 3 with that extra little something - T21! There were also 3 kiddos (including Cass), all the same age, 1 with Down syndrome!
All of the kids, playing together. Us moms, sitting and chatting about our experiences. What a wonderful day it was!
I have known two of the moms for a couple of months now and met this new mom at The Morning Travelers Group, which we attended last Saturday.
I feel SO fortunate to have already met so many wonderful people who are traveling this same journey. And as we continue traveling, I am looking forward to meeting even more.
Thursday, April 23, 2009
Honestly, I was kind of hoping that he would be more of a Diego guy.
Sunday, April 19, 2009
A couple of weeks ago I took Dylan to the pediatrician for a rash concern. This is our new pediatrician's office - you know - the one who specializes in kiddos with developmental delays? Well, I had kind of an awkward experience. The nurse who saw us is not Dylan's primary care physician, but rather was the only one available on such short notice. Anyway....throughout the entire visit, I was really just not getting great vibes from her. She was a know-it-all type and honestly, I could have done without her "extra jokey" personality. Yeah, so I wasn't exactly in the best mood as we had already had a long medical kind of day, but still. I was looking for a bit more professionalism, I suppose.
The nurse basically blew me off about the rash and told me to stop feeding Dylan peaches, change my detergent and change D's bath soap. Thank you very much.
Then, she looked up at me and said, "Hey. He doesn't have those simian creases.". I said, "Yes, I know. I don't know why. He just...yeah. I don't know.". She then proceeded to point out all of Dylan's "Down syndrome characteristics". "See his eyes? The shape? Then look how they are spaced far apart. Also, his ears are low. His arms are short and his hands are small and pudgy. Also the tone. Look...see?". She then picked up his arm and let it flop to the side and said, "Actually, his isn't bad at all. Usually Down syndrome kids (UGH!!) have much lower tone than that.".
I was standing there. So still. Looking at her. Probably with my mouth open, just....absolutely speechless.
But here is a censored version about what I was thinking: Honestly? How RUDE can you be? To stand there and pick apart my baby like that! This is my baby. My son.
Ugh. I am tearing up just thinking about it.
Then, she gave me a slip of paper to bring to the receptionist to check out. I looked at it and here is what it said:
Problem: Contact Dermatitis
Additional Problems: Down's
Down's. Down's? Are you kidding me? Down's? A. of all - it's not freaking Down's (it's Down, lady!!). And B. - we were not there because of Down syndrome. We were there because of a rash. And what does "Down's" have to do with that?! Sheesh.
Fast forward to Friday.
I was on a walk with Cass and Dylan. We approached a woman who we see all of the time walking with her little dog. We stopped to chat for a bit. It was getting close to 11:30 so I told her that we had to get going as it was almost time for Dylan's PT lesson. She got a worried look on her face and said, "Oh no! Why? What happened?". I responded very casually (even though I was actually quite nervous as I still feel...what's the word...awkward, I guess, telling people that Dylan has Down syndrome) "Oh, nothing is wrong. I'm not sure if I've mentioned this to you before (I knew I hadn't), but Dylan has Down syndrome and...". I stopped for she was no longer listening. She had taken off her sunglasses, leaned in really close to Dylan's face, studied him for a few seconds and turned to me and said, "Huh. He doesn't look like a Down's child.".
So, what is the point of all of this rambling?
What I am wondering from all of you lovely ladies who are traveling this same path, is, what do you do or say when people blurt out...um...how shall I put this? Rude, ignorant and well...not so empathetic things? Do you just get used to it after a while? I know that I am overly sensitive as it is. And, I mean, I know that these people are not intentionally trying to hurt my (and Dylan's!) feelings. I do know that. And I also realize that part of the problem is that people simply do not know what to say. I try to think about what I would have said if someone told me that their baby had Down syndrome. I don't know what I would have said before having Dylan in my life. I really don't. But jeez, I would like to think that it would have been something a bit more...compassionate....than some of the things that I get now.
So, what do you say when you get the random, ignorant comment?
And...do you mind if I steal it for the next time?! : )
Wednesday, April 15, 2009
I was in the kitchen this morning, folding clothes, and I overheard Cassidy saying to Dylan, in such a sweet and innocent little voice, all the while petting his belly, "Are you my big sister, Dylan? Hmm? Are you my big sister?".
I took my camera out and filmed for just a minute. And while this is such a typical minute in our family, I can't help but well up a bit. And swell with pride. Their bond amazes me. They amaze me.
Friday, April 10, 2009
First stop: The Cardiologist
As you may remember, Dylan had open heart surgery back in November to repair an AV canal defect as well as a 'surprise' defect called an A.P Window. Today Dylan had a follow-up appointment which included an EKG and an echo cardiogram to see how his heart was faring.
Dylan was feeling quite optimistic about the results.
As he should have been. Whew. We were told that while he does still have a small hole in his heart, it is apparently nothing to be concerned about. As a matter of fact, the cardiologist didn't even mention the whole "small hole thing". I was the one who brought it up and he just waved his hand away and said, "Oh no. That is nothing to be worried about". Dylan does have a troubled valve which has gone from "moderately leaky" to "mildly leaky". Again, positive news. But you know...never in my life did I think I would be so happy about a small hole and a mildly leaky valve in my baby's heart, but alas, I am!! Very much so.
And guess what? We do not need to go back to the cardiologist for one whole year!!
Next up: Physical Therapy
Because Dylan is not quite sitting up on his own, nor is he too thrilled with practicing this skill, his PT suggested that we put him in a laundry basket instead. Um. Say what?
Last stop: The Pediatrician's Office
We left the pediatrician's office with the instructions to change our detergent as well as our bath soap. Hm. We shall see.
Monday, April 6, 2009
Today's session started out a little shaky because Dylan was due for a nap (why does that always happen when EI is here?!) but eventually he got a second wind and began enjoying himself.
I found that music therapy actually incorporates most of the goals that we are working on with Dylan, plus it comes with some pretty cool tunes!
A little "Itsy Bitsy Spider" action.
Sunday, April 5, 2009
Thursday, April 2, 2009
See...we have just recently made the big switch with our pediatrician and, well, everysingleotherdoctorthatwentalongwiththem. I have not been that pleased with Dylan's pedi as it seemed as though her experience with Down syndrome was quite minimal. I felt like I had to research information on my own and then let her know of my findings. I am reallllly not comfortable trying to be Dylan's doctor, so we switched. Not to mention, there were a couple of instances where she referred to other babies as the "normal babies" (as in, your baby is somehow abnormal?) as well as a time when she told me that we should start trying to apply for SSI because "when Dylan is older, he probably won't be able to work.". Yeah. Thanks for that. Buh-bye!
Now we are completely involved with Boston Children's Hospital (eyes, ears, heart, GI...) and I feel soooo much better about everything. I feel as though we will be receiving the very best care in this area from doctors who have loads of experience with Down syndrome. Whew! That's a relief.
And yesterday, it was about those eyes.
It appears that Dylan's left eye has some sort of nerve malfunction. This is not anything that has to do with Down syndrome, but apparently was just some kind of fluke that happened while Dylan was forming inside of me. I wish I had the technical term for it, but 1. Cassidy was in the middle of a rather embarrassing tantrum while the doctor was explaining it all to us and 2. the doctor told me that she did not want me going home and googling the term because she said that it would only cause me to worry and there was nothing at all that I could do about it anyway.
So that's what that eye wandering thing was all about. Of course, you know that I am going to call her back today and get the technical term anyway. So I can Google it. And worry.
We also found out that Dylan is near sighted but most likely won't need glasses for a few more years.
You know...I just can't wait to see how adorable he is going to look in specs! : )