Some good stuff...

1. Thinking back, I would say that since Dylan's heart surgery, I have not spent more than a single hour apart from my non-napping 2 year old daughter, Cassidy. You know, the heart surgery that was on November 4th. November people. That would be about 3 months of total togetherness. Just as I was fearing that I might actually lose my sanity, my parents (aka Piecey and Papa) came for a visit from Wyoming. This morning they asked if it would be OK if they took Cassidy on some errands for the day. Umm, hello! Yes! Please!

So it's just me and Mr. Dylan right now. Speaking of which, this morning I noticed that he is apparently growing a mini-mohawk! See?


2. A couple of days ago I put Dylan down on his playmat - specifically on his back. I came in the office to check my email and when I went back to check on him a couple of minutes later, he was on his stomach! Wouldn't you know that I missed his first experience from rolling back to belly?! But still...he did it!! Now, to see if I can catch the little bugger doing it on video...

3. I'm sure I have mentioned before that Dylan did not pass the newborn hearing test. Nor did he pass a more extensive hearing test that was given to him when he was a couple of weeks old. That was the test that required all sorts of wires to be poked into his tiny little ears and sticky things to be placed all over his head and face. All while he was suppose to remain sound asleep. Not fun. So anyway, yesterday he had a less intrusive follow-up appointment that showed positive results. Both of his eardrums responded appropriately to the sounds and they feel at this time that it is not necessary to send him down to Boston for the sedated ear exam! Whew, I can not tell you how happy I am to hear this news! This hearing stuff has been weighing on me for about 6 months now, but come to find out my little guy can hear!!!! Yeah!

That's my good stuff for the day. What's yours?

Six Month Evaluation

Well...I must say, that wasn't so bad after all.

We had Dylan's 6 month evaluation with Early Intervention last week and then the IFSP meeting this morning. During the evaluation, I explained to the team that Dave and I were most interested in hearing about how Dylan is doing with his current goals and where we want to go from here. I said that we do not feel it is necessary to hear at what age his functioning abilities are at in comparison with a "typical" baby. It's not that we are in denial about it, but rather we feel it is best for us to focus on the positive aspects of Dylan's efforts. We want to compare Dylan with Dylan. That's it. And in doing that, we were able to celebrate the fact that Dylan has reached each and every goal that was set for him back in July!

So, he did quite well with the evaluation. Of course it's one of those things where when they want to see if he'll reach for an object they will try it once. If he doesn't do it, then apparently he hasn't yet mastered that skill...even though in reality he does it all day long for us!! Ah well...

The results showed that Dylan's strengths are definitely his social and emotional skills (no surprise there!). His highest needs are gross and fine motor. Because of this result and because of the way that I've been feeling lately about his low tone, I asked if we could bring in a PT in addition to the OT that he currently receives. They hesitantly agreed saying that they really didn't want to overwhelm us with too many services. While I do understand what they are saying, I feel strongly that it is at least worth a try. If it helps Dylan in any way, I am game.

At this point his Early Intervention schedule includes OT and PT each once a week. His nurse will come twice a month as will our Family Therapist.

Now...let's just hope all of this Early Intervention stuff helps out our little guy, eh?!

Gave the Exersaucer another whirl...

Thank you all so much for your thoughts and ideas in response to the low tone woes I was having the other day. We have already tried many of the ideas and I'm looking forward to trying more!

This morning I stuffed a big ol' blanket into Dylan's Exersaucer just to see what would happen.

Here is the result: (...and please pretend that you don't see Cassidy's Bumgenius diaper behind D's head. It's clean, I promise!)


I am so proud of him! As much as EI may not like it, I really do think this will help build some much needed trunk and neck strength for Dylan.

More pics to follow with some of the other wonderful ideas...

Low Tone Woes

I may have mentioned a few (cough *thousand* cough) times, that like many babies with Down syndrome, Dylan has hypotonia, or low muscle tone. We were told this fact shortly after his birth while he was in the NICU. Honestly, at the time it didn't mean much to me as I was trying to digest Down syndrome and an AV canal defect as well. Also, I didn't fully understand the impact that hypotonia would have on Dylan. Now that he is 7 months old, I feel as though I am beginning to understand the challenges it brings.

Dylan is wobbly. So so wobbly. I am concerned that he is quite far off from sitting and I am not able to help him. Each time I try to hold him in a sitting position, he arches his back and gets totally rigid. His OT told me that this is his way of trying to stabilize himself. He feels out of control in a sitting position, thus he tightens himself up. This is understandable, but, how can I get him to get used to sitting if he isn't able to practice the skill?

We try working on tummy time, as I understand it is extremely important in strengthening muscles, but since Mr. Dylan has learned how to roll from tummy to back, tummy time now lasts about .2 seconds.

I am running out of ideas on how to best work with my little guy. I am also running out of places to put Dylan during the day so that he is still working on holding himself together. I understand the bouncy seat as well as the swing are not ideal places for strength building.

I would love to hear some ideas from you if you have them. Any positioners or seats out there that I should invest in?

As always, thank you so much for reading!

Hope

For some reason yesterday I started feeling this strong desire to see someone else, besides my sweet little guy, with Down syndrome out in the world. Out in the world doing basic every day things...just like everyone else. I went to the grocery store in hopes of seeing the young man with Down syndrome who works there. I had seen him there many times prior to having Dylan and had always enjoyed talking with him. However since having Dylan, I haven't seen him. I don't even know if I would have actually spoken with him or not. I just wanted to see him.

Turns out, he wasn't there.

So, I found myself standing in the middle of the grocery store looking around and around. I started thinking, 'Wow. No one has Down syndrome. I never ever see anyone with Down syndrome. Why aren't there more people in this world with Down syndrome? I want to see more people! I want to feel connected. For my son to feel connected. I don't want Dylan to feel...different or alone in this world.'

I left the store without finding what I was looking for.

That brings us to today. Now, what do you suppose would cause a grown up woman (ahem, that would be me) to cry while at the gym on her elliptical machine? This story playing on the television screen.

This is exactly the kind of stuff that gives me hope. This is what I was looking for yesterday. Here is a young man with Down syndrome out in the world doing an everyday kind of thing. He is playing a sport and interacting with his peers. He is making his parents proud. He is happy.

For me, this is hope. Hope for Dylan.

strange

I don't really know how to explain this, but I think it's worth a try.

Sometimes it feels - for lack of a better word - strange to me that I have a baby who has Down syndrome. No...I know that "strange" isn't the right word that I'm looking for. But, I can't seem to find the perfect word to describe what it is that I'm feeling...anyway...

I was taking a shower yesterday and all of a sudden I said out loud, "I have a baby with Down syndrome.". And it felt...strange to me. Surreal. Even the words "Down syndrome" felt foreign or distant. Like words that I had never expected would be a part of my life. A part of my heart.

I mean, I know that Dylan has Down syndrome. And I have known this fact for 7 months now. But there is just something that happens when I hear it spoken out loud. When Dylan and Down syndrome are spoken together. I hear it and I breathe in quickly. Just the tiniest gasp, a small intake of breath...like oh yeah! Down syndrome. Dylan. That's right.

I guess hearing it still has the ability to shock me, just a little bit. Is it because I forget? Or because it still has an effect on me?

I have talked about this before with my sister, Kim. She had actually brought it up to me one day while we were chatting on the phone. I was so incredibly relieved to hear that someone else has felt it as well.

I remember about a month or so ago, Dave and I were sitting on the couch and all of a sudden he turned to me and said, "I still can't believe it.". I knew exactly what he was referring to. I said, "I know.".

I wonder... is this is all a part of the journey? Will there be a time when I can hear Dylan and Down syndrome spoken together and not flinch...just the tiniest little bit?

Our big boy

Daddy's little Dead Head baby...

...is apparently catching up to his big sister.

Check it out:

This picture was taken shortly after Dylan came home from the NICU. Aw, such a sweet and tiny little thing, isn't he?!

This was taken today.

Ah, my little guy is growing up so quickly!!