Wednesday, September 30, 2009

Bummer Appointment

So. Dylan had his 15 month appointment yesterday and I'm feeling a bit bummed about it.

It turns out that he has actually lost a "significant amount of weight" from his last appointment 3 months ago. Even though he is affectionately referred to by Cassidy as "The Spit Up Guy", I was very surprised when I placed him on the scale and saw his weight at 17 pounds. When the doctor came into the room and read his chart, she asked if we could weigh him again, just to be sure. Yep, 17 measly pounds. Ah. The doctor thinks that this loss could be from his reflux, but isn't sure. She suggested some different things for us to try - Pediasure, whole milk (as opposed to soy), protein at every meal, cereal with each jarred food, avocado, etc. We have 6 weeks to fatten the boy up, as that will be his next weight check. If by then he still hasn't gained, she will recommend that we go ahead with the endoscopy and bronchoscopy. So, there's that.

Then she asked me to brag all about Dylan. She said, "Tell me what is great about Dylan. What has he been doing lately?". I excitedly told her how I'm pretty sure he has learned his first sign, how he drinks from a straw, how he is beginning to experiment with scooting forward when on his belly - commando crawling - and a whole bunch of other wonderful things, naturally! Then, out of left field, like a swift little punch to the gut, she said, "Great! Sounds like he is functioning at around a 9 month old level.". Greaaaaaaat. Could've done without that little tidbit of info.

Lastly, it appears that Dylan still has a heart murmur. I told her that at his last echocardiogram, the cardiologist told me that one of his valves was leaky, but didn't seem overly concerned about it. She recommended that I call and schedule an appointment with them, just in case.

Oh yeah - and the appointment wrapped up with 3 swift jabs to the little guy's sweet unsuspecting legs.

Bummer appointment, indeed.

Monday, September 28, 2009

Doggie

So, I'm pretty sure (emphasis on pretty), that Dylan has begun showing us his very first sign! I noticed a few nights ago that each time he'd spot one of our dogs, he would pat his tray. Yep, I know the sign for dog is patting your leg, but the times which we most frequently see our dogs are meal times. Naturally, they are always quite close to Dylan when he is eating, as they have learned that when he's is in his chair, food always falls from above.

Here he is tonight. *I am saying the word "doggie" but I am not doing the sign.*

video

What do you think? I'm tempted to say that he may actually be catching on to signing! Yeah!!!

Thursday, September 24, 2009

The Straw Cup

I received a few emails about my last post, so I am just going to explain what we did to help encourage Dylan to use the straw cup.

If you have minimal interest in all things pertaining to straw cups, please feel free to skip this, as it might actually be the most boring post in the entire world. Ha!

So, after trying 732 different sippy cups, open cups, and nosey cups, I decided to give the ol' Honey Bear Cup a try. You may find one here. I liked this particular straw cup because I could actually squeeze the liquid right into Dylan's mouth. Our OT suggested only squeezing the liquid into his mouth when his lips are sealed on the straw - that way, he will learn that the only way to get the liquid is by closing his lips around the straw.

We started out with milk mixed with Thick-It. I do think that having the milk thickened helped Dylan, as it was much more manageable. Rather than having a thin liquid poured into his mouth (which caused him to choke), this was more like his baby food and he could move it around a bit better before swallowing. Plus, it went into his mouth more slowly and was probably a bit less overwhelming.

After some realllly nasty spit up incidences with regular cow's milk, I decided to switch to soy milk.

I'm guessing (and I am probably way off, as I seem to have a terrible sense of time) that we used the Honey Bear cup for about 3 months or so. I admit, I was getting very frustrated! It seemed that even when I did squeeze the milk into his mouth, he would then proceed to spit it all back out. I even resorted to putting a plastic bib on him - you know the kind with a built in pocket at the bottom? I remember taking it off him after each meal and sure enough, 99% of the milk was in the pocket at the bottom...

So, after a few months of that fun stuff, one day I decided to put the straw into his mouth without squeezing it at all to see what would happen. Lo and behold, he sucked the milk up completely by himself!! If you are still reading this, then I'm sure you can relate and comprehend just how freaking exciting that was!!!! Yeah!!

After he learned how to use the Honey Bear Cup properly, I bought him a real big boy straw cup. He didn't appreciate the switch at first, but after one day, he caught on to the new straw and actually barely spills any milk at all anymore.

I guess my advice would be to just keep practicing and practicing and practicing. I remember a while back a wrote a post about how I feared I must be "insane" because I kept doing the same thing over and over and over and expecting a different result. Well, thankfully our persistence paid off! I'm not insane after all! Yay! No seriously though, I wonder if a big part of this is just plain luck? Practice, consistency and a whole lotta luck!

Well...I hope that was somewhat helpful. If you have any other questions, please do not hesitate to email me. I'm not sure I know what I'm talking about, but I can certainly try to help.

Wednesday, September 23, 2009

Lately...

Our big girl has started going to pre-school. Just 2 mornings a week, but that is enough for now. She has also mastered the ol' potty training business. Well...'number 1' of the potty training business, anyway.

Here's a picture of Cass on her second day of school. Yes, yes I know. But, I did take lots of pictures of her first day of school as well, it's just that I, er, forgot to put the camera card in the actual camera for those ones. So...yeah.

Cheeeese!

And our big boy has mastered the straw cup! It has required a bit of practice, but he's certainly gotten the hang of it now. Yeah!
I have officially begun weaning him from nursing, which has turned out to be quite bitter-sweet for me.
Ahh, my kids are growing up. Right before my very eyes.


And how lucky am I to be along for their rides...

Monday, September 21, 2009

Seen through loving eyes

I had my First Call Program training on Friday. While there, I had heard about this new non-invasive blood test that will soon be readily available for women to receive early in their pregnancies.

After hearing of this, I wanted to write a post about it. About how it makes me feel. About how it will affect Dylan. How it will affect Down syndrome. Heck, how it will affect the world.

But, alas, I couldn't quite get it down. My feelings got jumbled and my head began to ache.

Beverly Beckham does it oh so well. Please read this lovely article written by her, a grandma of a little girl with Down syndrome. It's called, "Seen through loving eyes".

Think about it.

Monday, September 14, 2009

Saturday, September 12, 2009

Ramblings

So, I've been feeling, ahh, I don't know if I can find the perfect words to describe it, but I suppose bummed out will suffice, about my last post. While I do believe that it's perfectly fine to feel down and out every now and then, I think my post was too extreme. I guess that will teach me to spill my thoughts following a less than stellar physical therapy appointment in which new concerns were revealed regarding Dylan's "speech"...or the lack thereof. Eh, that in addition to more oral motor "wake up" suggestions and it felt like just one more thing on top of an already large pile of things, you know? And then, while typing, I glanced up at Dylan only to see him spitting-up. Large amounts of spit up. Aaaagain. And so it went - my depressing post began.

~

I was lying in bed last night trying to fall asleep, and all of a sudden I had this revelation. See, I have spent the past few weeks trying to write, (and by "write" I mean "think about") a speech for this Hall of Fame banquet that is fast approaching. I have been inducted into my college's HOF for swimming. Actually, I was inducted at this time last year, however I declined because Dylan's heart surgery was just weeks away and I was unable to wrap my head around anything else at the time. Period.

A few months ago I received some paperwork in the mail and have recently begun to look it over. There is a biography containing specifics about my college swimming carreer. I was asked to review it and email the committee with any inaccuracies. This biography includes fastest times that I achieved, places that I finished in big races and records that I set. I laughed a little bit the first time I read this bio thinking, "Ha! How in the world am I suppose to remember this stuff?!".

Last night it occurred to me why I am struggling with my speech. And why I can't remember the stuff that is suppose to be most important - the best times, places, records. The very stuff that got me into the Hall of Fame isn't the stuff that matters. It's not the stuff that I remember. Or cherish.

As I thought about this, I figured eh, my life certainly has changed since then. It was all about the competition and the races back then. I thought that that stuff must have mattered most to me then and that, because of Dylan, I am just now learning otherwise. That life is not a race. It's not a competition. But you know what? Without realizing it, I must have known this all along. If the most important things to me were the races and the times, then surely I would remember more about that stuff now, right? I mean, I look at that biography and feel quite certain that if they had been talking about a teammate of mine by mistake, I wouldn't know it.

You know what I do remember, though? I remember the friends that I made. The long bus rides we took to various colleges. How my teammates and I ate cinnamon bagels before our Saturday meets. I remember how my coach played the banjo as we grumpily filed in for our 6 a.m practices. I remember our cheers, our big green jackets, Florida training trips, sour patch kids, the weight room.

Isn't that awesome, to be able to remember that kind of stuff? Aren't those the kind of memories you want to cherish? For isn't that what life is about?

So, as I lied in bed last night I smiled. I thought, "Yes! I got it!!". Years from now I will probably not remember exactly when Dylan learned to crawl or walk or talk. I won't remember how old he was when he stopped spitting up (OK, maybe I will, because seriously, that one is realllllly getting old!). I will probably hesitate and have to think hard if someone were to ask me when Dylan stopped eating baby food.

But you know what I will remember? Most definitely, I will remember his smile and his laugh. How he loved to clap and wave. How his mouth moved when he got really tired and how his eyes were when he looked up at me and touched my face.

And thank goodness for that. Because really, isn't that the stuff that matters most?


Wednesday, September 9, 2009

Focus

It seems as though lately I have been losing my focus.

I remember very clearly, at the Down syndrome Conference back in March, one of the speakers - who is the manager of the Down syndrome Program at Children's Hospital - talked about how the majority of the phone calls she receives from discouraged and distraught mothers of kids with Down syndrome, is when their children are in the 14-18 month age range. For that is the time, she said, when their delays become more obvious and when the reality begins to set in.

Indeed.

Lately I have been feeling it. Discouraged. Overwhelmed. Thoroughly confused. Unfocused. And pressured. Ah the pressure. Darned if I know where that's coming from (although my guess would be, ME!), or why it's constantly nagging at me. But lately I've been feeling this urgency for Dylan to learn things. He is over 14 months now. C'mon! Why does he still spit up 100 times a day? Why won't he eat real food? Or drink? Or crawl? Or talk? Yes, yes, I know that "he will learn things on his own time". I know that he will, I do. And most of the time I am fine with that, really. It's just that every now and then it's...hard. Everything is just very very freaking hard. It's overwhelming, it's scary, it's discouraging and it's just. plain. hard.

And you know what? I think the reason why I have been feeling like this, is that I've begun, little by little, to lose my focus. To lose my patience. I've started to lose sight of Dylan. Lose sight of the big picture. The worry and fear about milestones and time frames has begun to consume me and I've been left with very little energy for much else...

It is times like these, that I need to stop. Just stop. I need to sit back, breathe, and I need to regroup. I need to look at this boy and refocus on what really, truly matters in this life, because he sure as heck isn't wasting his time being consumed by worry.

I need to remind myself to love first. Be happy. And stay in the moment.

Friday, September 4, 2009

Meant to be

I read this article earlier today on my friend Cathy's blog and had to share it with all of you.

*Might want to grab a tissue. Just in case...

~

I am only one year into this journey, and have already found myself being pleasantly surprised by the connections that we've made, and the doors that have been opened because of Down syndrome.

Sometimes it even makes me wonder about, and then begin to believe, that maybe things do happen for a reason, after all...