The Swallow Study...

...wasn't exactly what I had in mind.

Prior to this appointment, our Early Intervention Service Coordinator had told me what to expect, therefore I had envisioned Dylan sitting up in a high chair, happy as can be, being offered various foods and drinks all the while being x-rayed (is that even a word?) to see whether or not he was aspirating. What I did not expect, was the x-ray machine to basically pin him down on his back while a nurse impatiently instructed me to "hold his arms down tightly" to keep them from flailing about all while she squirts barium down his throat from a bottle. And then again, same deal, with water. "But he's going to choke on that! This is why we're here...because he chokes on thin liq...". No matter. They had to do it anyway. Sheesh. In the midst of it all, I couldn't help but wonder, 'Why why why am I doing this to him?' Ugh. Poor ol' D.

As it turns out, the results from the study came back just fine. It does not appear that he is aspirating, which is great news. I was able to speak with the speech/language pathologist for a bit after the test and she agreed that most likely Dylan's difficulties with feeding and swallowing are developmental. That sealed the deal for me - no scopes. I canceled the procedure as I simply can't justify it at this time. It just does not seem worth the risk.

What I do need to do, is continue being patient with Dylan and his feedings. I admit that I did have a moment last night where I felt quite sad and defeated with the whole sippy cup debacle. I was sitting across from Dylan and watched him, as I do every single time I offer him the sippy, bite it and then throw it on the floor. You see, I think part of the urgency I feel at this point, is that I am growing tired of nursing. And not only that, but because he thinks the sippy cup is something to bite on, he has transferred that habit to biting me as well.

Ah well.

Onward we go. Doing the best that we can do. Day by day.

Speech...and stuff.

Dylan had his One Year Evaluation with our Early Intervention Team yesterday. He did very well and has made some really nice progress. Actually, he has met all but one of his goals that we had set for him back in January or February orrr whenever our last eval was. It is probably no big surprise that the goal he did not meet was his feeding goal. I think it went something like this: "Dylan will be completely weaned off breastfeeding and will be eating solid food.". Umm...not quite. Eh, we'll just keep on keeping on with that one, right? But really, I could not have been more pleased with how it all went. The Team respected my wishes to focus on Dylan's progress rather than be given a "score" at the end of it all correlating to the age at which he is working at. And again, it's not that I am in denial here (although I do admit he is quite the superstar, ha!), it's just that I know myself. And I know that I would not have done as well if I had to hear that he is really functioning as a "x" month old. We do better comparing Dylan with Dylan. That's it.

So, I decided to ask our service coordinator if it would be possible for us to start speech services in the next few months. They told me the same thing that they've been telling me all along - that I am "already working on speech with Dylan every day just by talking with him and playing with him" and that even though "he receives OT and PT, they are also actually incorporating speech with him with what they are already doing". While I do understand this, I am not 100% convinced. I mean, I would kinda sorta prefer someone who specializes in speech to be working with my son. But then again, what do I know? In any case, they said that they would put in for a consult. That way, the speech therapist will come out and will evaluate whether or not it is appropriate for Dylan to begin receiving ST services. I'll be curious to see what happens...

Be honest with me here - am I out of line to suggest starting speech at this age? Will it be "worth it"? I mean, if nothing else, it won't hurt, right? It's just that speech is a big concern of mine and I know that many kiddos with Ds struggle with it. I just want so badly to give Dylan every opportunity that I can. I do not want to look back in a few years and wish that I had done something sooner, you know? But then again, I also do not want to bombard Dylan with a zillion therapies...bahhh.

Shoot. Again with the manual. Where did you say it was??

Having Issues

That would be me...the one with the issues.

So, now that I've had some time to process all of the information from the Feeding Team/Swallowing Center, I'm not totally sold on the idea of the lots-o-oscopies. The more I have thought about it, the more I am wondering if maybe this is one of those things that may require just a bit more time and perseverance? A bit more patience on my part? Maybe I haven't been giving Dylan enough opportunities to learn how to chew and to learn how to swallow? Maybe it's me with the problems, not him. Bah. Who knows.

I just got off the telephone with Dylan's pediatrician to ask her thoughts on it all. Naturally, wouldn't you know that Cassidy decided that the minute I called her, would be the perfect time to scream, yell and cry? The perfect time to demand "More puffs!" over and over again? And while I must admit, I did attempt that whole silent mean face thing in a desperate attempt to scare her into being quiet, it didn't work. I had to resort to closing myself in the bathroom with Dylan in my arms while Cass continued to pound on the door yelling, "Mommy! Get out here!". Ah, nice. So, what I think the pediatrician was trying to tell me was to go ahead with the swallow study on Friday (even though we are still not quite catching on to the whole sippy cup thing...ahem...), see what the results are from that and go from there. If they still suggest we continue on with the scopes, then I suppose that's what we'll do. They are scheduled for Monday, so we shall see. While his pediatrician does recommend the scopes, she also understands my hesitancy. I guess I just don't know if the benefits outweigh the risks here...and how, may I ask, am I to know for sure without actually doing it?

Good grief. Where in the world is my parenting manual? Because today, my friends, is one of those days that I desperately need it.

Because of Dylan...

...we have been incredibly fortunate. In oh so many ways.

One of them being that we've connected with the most wonderful people. Parents whom we may have never met if it weren't for our common bond - Down syndrome.

We have become good friends with Dylan's buddy Aaron.


With his great pal Josh.

And with Kayden, from The Kauff Krew, who was in town visiting, all the way from Texas!
I think Dylan was especially excited about seeing her in person!

Also because of Dylan...

I have recently learned more about The Parents' First Call Program through Boston Children's Hospital. This group consists of 40 trained parent volunteers who reach out to families who have, either prenatally or postnatally, received an unexpected diagnosis of Down syndrome. I will be attending the training session in Septemeber and will hopefully be selected to the program. I am really looking forward to reaching out to others, just as people have reached out to me.

Thank you Dylan, for being you. My life is richer, my heart fuller.

All because of you.

He is growing up...

...and is simply...

...the best little guy in the world.

With the guidance of his loving big sister.

Lots-o-oscopies

Remember my post about The Feeding Team? Well, we had that appointment today and are now scheduled for lots-o-oscopies. Also, I should clarify, as the appointment carried on, I learned that it wasn't so much a "Feeding Team" but rather more of a "Pediatric Airway/Swallowing/Voice Center" which really, when you think about it, sounds way more impressive than the Feeding Team anyway...

Sooo...

We met with a GI doctor first. Now, this is a different GI doctor than who we usually see, so I had to give him Dylan's whole reflux history. After hearing me talk (err complain) about the 4 different medications that we've tried thus far, he believes that going back to Prevacid is the way to go. He will try to work with our insurance company to get them to pay for part of the cost, as it's quite pricey. I am willing to try this again, as looking back, it seems to have been the most effective. (Read: At least with Prevacid I didn't get spit-up on over 20 times a day. Seriously.).

Next was the Pulmonologist, then the ENT doctor, and lastly the Speech Pathologist.

After meeting with each doctor and discussing the main concerns I have with Dylan, namely his difficulties with swallowing thin liquids (and everything that has been going on with that), in addition to the reflux, it was recommended that we have a swallow study done. While I am all for this idea, I must admit that we do have a small problem: that being the fact that Dylan has still not had much success with drinking from a sippy cup...or from anything for that matter. We were instructed to mix half applesauce/half water in a sippy cup (or half formula/half YoBaby), take out the valve, and just keep trying and trying and trying. And we have less than two weeks for Dylan to get the hang of it. Hm...

It was also recommended that Dylan heads back to Boston for a "surgical procedure". Namely, an endoscopy (for his stomach and digestive system), a flexible bronchoscopy and a rigid bronchoscopy (for his throat, airway and lungs). He will need to fast and will be put under general anesthesia for this procedure.

Ugh. I have mixed emotions about this, I think. On one hand, I feel quite positive that we are moving forward. I really am. Maybe they will find a problem and will be able to fix it. Yet, on the other hand, there is certainly a large possibility that there is nothing at all amiss with my little guy...and that I will have put him through all of this for nothing. Maybe I should "wait and see". And hope that he grows out of it.

But how do you choose?

Gosh. Am I missing something? I just wish so badly that I had this super-strong Mother's Instinct or Intuition...or whatever it's called. That way I would know for sure that I'm doing the right thing here.

A Week

So...we decided a change of scenery, a dose of Cape Cod, for the week would do us all some good. And wouldn't you know, the sun actually decided to shine on us for a bit?

And the scenery...it's not too shabby, eh?

Dylan quite enjoyed himself, I would say.

And Cassidy discovered not only the delicious-ness of Chocolate Mousse Ice cream with jimmies and M&Ms, but also the joy of being allowed to eat three Popsicles for lunch...because we are on vacation after all.

Dylan replaced his old favorite skill of clapping, with that of waving.

Ah, it was a wonderful week filled with treasured memories. Great food, frosty beverages. Helpful hands. Trips to The Aquarium, The Museum, the playground. Laughter and tears.


And sand...lots and lots of sand.