Down Syndrome Clinic

Dylan and I went to the Down Syndrome Clinic at Boston Children's Hospital today.

Looking back at the day, I'd say there are two things for certain: 1. I love my son even more right now than I did this morning. 2. Lugging him around for long periods of time in the infant car seat is realllly not a smart idea anymore. Oww my achin' back!

Have you ever been to one of these clinics before? We hadn't and it was actually pretty cool. Exhausting to be sure, but cool nonetheless.

The first specialist we met with was the Pediatric Doctor. She sat and talked with us for about an hour and a half. An hour and a half! I thought this was quite impressive, as most (Ok, more like all) of my previous experiences with pediatricians have felt very rushed. You know, those appointments where you feel terribly guilty for asking a question. But this doctor was not like that at all. She was great. We discussed Dylan's medical history as well as any concerns that we are currently having. We talked about various issues including signing (I need to start incorporating more signs on a daily basis!) and she gave me the name of a great website called Signing Savvy. She listened to his heart and sang songs to him. Overall, a very positive experience.

Next we met with the Nutritionist. She and I talked about the types of food that Dylan is currently eating as well as what our next steps may be. Along with experimenting with more "table foods", she also recommended giving Dylan vitamin D. I mentioned how the little guy is not having much luck with sippy cups and she suggested the good ol' honey bear cup as well as the nosey cups. Yes, I know I've been saying this for a month now, but I think we'll give those a whirl. No really, this time I mean it! I think.

Then, we met with the Physical Therapist. She worked with Dylan for about .2 seconds and said to me, "Wow! He really likes to arch his back!". Um, YES!! Ugh! Why oh why is he so darn archy? She thinks that it is his way of stabilizing himself. That he is in the habit of doing it, feels more secure that way, and just needs lots and lots of practice with sitting. Dylan showed off his clapping skills (many, many times!) and did an excellent job while on his tummy. He actually pushed himself up onto his hands, which was nice to see.

After PT, Dylan and I went downtown for a couple of beers. Kidding! Just wanted to make sure you were still paying attention...

We met with the pediatric dentist next. While I am fully aware of the fact that Dylan does not yet have any teeth, we still were encouraged to meet with her. She said that it appears that Dylan's top teeth are about a month or so from making their appearance! She thinks that those will be his first teeth as she did not feel the bottom teeth quite as well. Ah!! I can't wait to see how Dylan looks with teeth!!

Last was his hearing test. From the results of the ear drum test (I'm too tired to Google the medical term for it), it appeared that his hearing was just fine. However, upon further examination, she thinks that he may be having trouble hearing soft sounds. He has to go back in three months for another in depth exam.

Whew! It's no wonder the little guy fell asleep in the car on the way home...and then proceeded to sleep for the next 3 and a half hours.

Put your hands together.

I think it is safe to say that Dylan has learned his first imitation skill.

On Friday, I noticed that Dylan appeared to be clapping his hands. I wasn't sure if it was intentional or not, so I looked right at him and clapped my hands together. Sure enough, with a big smile on his face, he repeated it back to me.

Needless to say, he got quite the reaction! Read: I displayed my joy with lots of really annoying loud and high pitched cheering and laughing.

Dylan has since learned that by clapping his hands together, he can impress large amounts of people. As a matter of fact, this weekend alone, I would say that most of Cape Cod has seen this trick.

And while this skill does requires lots of concentration...

...it is SO worth it!

For not only is this a brand new learned skill, it has also put countless smiles on people's faces. Dylan has made people feel...good. And happy. Just for being him.

We continue to be so proud. And so humbled by this little boy.

Dylan

My favorite little guy, with his ever growing baby mohawk, in my, I mean his favorite new shirt.

*Now, let's pretend that we don't see that paci in the background. You know, the one sitting right there in plain sight? The one that Dylan's big sister still uses at night and then occasionally sneaks down the stairs when noone is looking? The one that she, at age 2 1/2, is still obsessed with? Yeah, that one. Battles, people. I'm picking my battles... : )

I apologize...

...for that really annoying post yesterday. Sheesh, whiney much?

Blah blah food blah blah

Ho hum.

I don't know why I am not trying harder. Sheesh. For someone who supposedly "really wants Dylan to learn how to eat solids and drink from a sippy cup", you'd think I might actually encourage the little guy to practice these skills? Good grief, what is my deal? I'm slacking here, people, and I need to MOTIVATE! Right?!

It's just that...I don't know. Maybe it's laziness. Maybe I'm tired. Maybe it's just too much. Too much focus on eating and food and sippys and...just the whole thing. The whole process. I never knew how much work it truly is, this eating business. I guess I never had to know. Now I do.

So, Dylan's Occupation Therapist was here the other day and showed me a whole bunch of different "oral motor warm up techniques" to use to help Dylan get his mouth ready to eat. Ok, let's see, it goes something like this: Before feeding Dylan anything, I am suppose to get a warm wash cloth and rub his cheeks in a particular pattern, rub his gums, the roof of his mouth, his tongue etc. Then, out comes his chewy tube. I need to use this to help strengthen his jaw and practice the chewing motion. Next, I need to get out the puffs, wet them, cut them in half and then stick them into the side of his cheek, one at a time. If he pops it out, I need to pop it back in and wait until he gags, er, I mean swallows it. Repeat. Next we practice the sippy. I have to hold his cheeks together so that he learns to suck rather than bite. THEN, I cut up his prevacid tablet, put it in one teaspoon of water and hope like heck Dylan swallows it rather than spits it out (the stuff is not only pricey, but he reallllly needs his reflux meds so that he doesn't fall back into that uncomfortable "rigid mode"). Lastly, one teaspoon of Milk of Magnesia down the hatch.

Whew. Once all that is accomplished, I feed him his jarred baby food. He loves his baby food and he eats it so well, but the guilt and the worry is getting to me. I feel like he should be eating more solids. I feel like he should be drinking from something (ahem, other than...me). But does he need to be doing these things? Eventually, yes, of course! But right now...I don't know. Ugh, I don't know what I'm doing. I mean, will he learn these things on his own eventually? When HE is ready? Or is this (the washcloth, the chewy tube...) something that I truly truly do need to practice every single day? Because if it's the latter, I seriously need to get my act together. And get motivated to practice his oral motor activities before each meal. Because, to be perfectly honest, I am not doing it as often as I am "suppose" to.

And that means that I am not doing enough. And that's not fair to Dylan.

Ugh. Anyone have any spare motivation and/or energy you can send my way? I would really appreciate it.

**edited to add**
The NUK brush - that's what I forgot. There's the NUK brush rubbing as well....woops, see I am a slacker. I can't even remember all of the steps...

My Little Ones

What more could a Mother ask for?

Happy Mother's Day, Everyone. Enjoy your special day : )

Aha!

Yay!! Take a look at this:

With the help of my friend Michelle, (thanks so much for the mirror!!), I've discovered a way to get Dylan to practice sitting! I realize it's a bit...make-shift-y, but hey, it works!

I'd say that Dylan is quite proud of himself. What do you think?

Six Months Ago

It was exactly six months ago when Dylan had open heart surgery. He was 4 months old.

This was the surgery that was meant to repair his complete AV canal defect. However, once the surgery began, an additional, and extremely rare defect called an AP window, was discovered.

The actual surgery took about 8 hours. We were told that because Dylan had been on the heart/lung bypass machine, as well as being put on cardiac arrest for so long, that his recovery was going to be quite difficult. We were told that Dylan's lungs did not "look good" and he was in "very very critical condition".

We were scared. This didn't sound optimistic. But as the days passed, more and more tubes and wires were removed. Dylan was taken off of the ventilator. He was recovering! And recovering quite well, I might add!

On day 6 we were surprised yet again. This time it was an omentum hernia that required surgical repair. Eh, a minor set-back in the big scheme of things, I'd say. Once that was taken care of, he was on the road to recovery once again. And this time, it was the fast-track.

Dylan was in the Pediatric Intensive Care Unit for a total of 9 days. He came home with some Tylenol, Lasix, and instructions on how to pick him up properly. We were told that it would take up to 6 weeks for his ribcage to fuse back together. We were careful with him and he seemed comfortable.

I remember being home with him then and thinking, "He's here. He's fine! And we are fine, too. We did it. I can't believe we did it!".

The day of Dylan's surgery was not an easy time, to be sure. Probably the most difficult day of my life, actually. But you know what? We got through it. And we came out of the experience even stronger. And with even more love than before...we learned just how fragile life can be.

It's funny...part of me feels like this all just happened yesterday, but yet another part of me feels like this was a lifetime ago. I think I am different now. I feel like I have changed, somehow. Like I am all the better for it. And stronger, too. All because of Dylan.

At a Standstill

Right now, I feel like we are...stuck. We are stuck in a developmental rut and I don't know how to get out. How to move forward. In all honesty, I do not think I've noticed any progress over this past month, I really don't. I think back to where Dylan was last month and even the month before, and I'm pretty sure we have not moved forward. Even just a tiny bit. What gives? I understand that Dylan's development may be slower, but my concern is that we aren't even moving at a slow pace. We don't have a pace. In fact, I'm pretty sure we are at a standstill.

The two biggest struggles right now are sitting and feeding.

Sitting. Ah sitting. I swear, I try everything that I can possibly think of (yes we have a Bumbo, no he won't sit in it) but boy is he floppy! And when he is not flopping, he is arching his back due to reflux meds that aren't working properly (grr!). Sigh...I feel as though we are exactly where we've been for weeks and weeks and weeks. His PT tries to reassure me after each session, "He's going to get there! He is!". Again...I know this. I do. I just wish...I just wish I could see a tiny bit of progress. Maybe if he was able to sit - just for a second. Something. Anything. But, you know, it's not really even about sitting, I suppose. For me, it's about progress. About seeing a progression. Something to go on so that I can find hope and belief in the statement that he really is "going to get there".

And feeding. We're stuck here as well. Now, I must say, he does very well with eating lots and lots of stage two foods. In fact, he will eat just about any fruit or veggie (or gross meat/rice/veggie combo meal) that is offered. Our eating problems consist of the solid food (I mean, real solid food) and weaning/sippy cup variety.

Dylan's OT recommended that I start trying to give him those puff thingamajigs. Now, just so you know, on a good day, I am absolutely petrified of choking, so to sit and watch Dylan choke and gag on a puff (all the while smiling and telling him, "Good boy! Yayyyy!" so that he thinks this is all really fun and not scary) is pretty much torture. I have also tried those Baby Mum Mums and those didn't go over well either. Our OT has said that Dylan is "hyper sensitive" and thus the strong gag reflex. She said to just keep at it. So, we are.

I have also been trying (although not very hard...ahem) to wean Dylan from nursing. I have begun offering him a sippy cup with formula every day after lunch. I know there is a whole sippy cup debate out there, so maybe I shouldn't even be attempting the sippy? The honey bear cup just seems...I don't know. Like it probably won't work? I guess I just want him to have some independence with feeding. I have also tried a bottle as well as a cup with a recessed lid. Both basically unsuccessful.

Am I doing something wrong? Or...maybe it's not necessarily what I'm doing wrong. Maybe I'm just not doing something quite right. Or maybe this is just...the way it is.