Saturday, October 31, 2009

My Little Chicken...

and his big sister, Kitty Cat, were quite excited about celebrating Halloween this year!

Little Chicken had just recently woken up from his nap, so he was a bit, err, dazed,


but excited nonetheless. Excited and healthy.


This time last year, we were just days away from Dylan's open heart surgery. Dylan's heart needed repair. And mine? My heart was lodged tightly in my throat. But still, we celebrated...


...with My Little Jack-o-Lantern and his big sister Bunny Rabbit.

Friday, October 30, 2009

Change of plans

and not by me.

(Revisited)

I called our satellite hospital this morning to verify Dylan's endoscopy procedure. You know, the procedure that I have talked about incessantly for the past, oh, couple of months? The one that I was hoping would help us understand the cause of his constant vomiting? The one that was scheduled by our GI doctor for November4th? Yes, that one. The secretary collected my name and number and said that a nurse would call me back to speak with me about all of the details.

10 minutes later:

Me: Hello?
Nurse: Is this Dylan's mother?
Me: Yes.
Nurse: Sooo, he has Down syndrome?
Me: Er. Yes?
Nurse: Oh. Yeah. Um, he can't have his endoscopy done here, then.
Me: Excuse me? Why not?
Nurse: We do not do procedures that require anesthesia on any Down patients.
Me: Excuse me? Why not?
Nurse: Because we are a free standing building and are not connected to any hospital. We cannot take the risk, you see. You will have to reschedule it down at Children's.
Me: ...............

So. After throwing the phone across the room and crying tears of defeat and frustration, I picked it (and myself) back up and called just about every medical person we are involved with who I thought may be able to help us expedite the rescheduling process. Unfortunately, I have not been very successful as we are currently looking at the end of November/beginning of December for the next available endoscopy appointment at Children's.

Un-freaking-believable.

You know, I really do try to believe that things happen for a reason. Seriously, I do. So right now, I'm just hoping that there is a reason for all this. And in the mean time, where oh where have I left my last beer?

Kidding.

Now, I am wondering if you are wondering why I am suddenly quite eager about getting the endoscopy done, when back in July I actually had the opportunity and declined? My answer to that is that his reflux has gotten considerably worse since then. Actually, back then, the endoscopy was scheduled to check for a laryngeal cleft. Vomiting wasn't even a concern a few months ago. So, because his struggles with reflux have gotten so much worse and because he has begun to lose weight, I now feel that an endoscopy is justified.

Am I wondering if perhaps they will find nothing and we will be left with the belief that this is all a low tone issue? Yes. Am I kicking myself (hard!) that I didn't get the endoscopy done when I had the chance. Indeed.

Ah. Onward we go.

Tuesday, October 27, 2009

I decided to do it.

I got both of my kiddos all vaxed up today. I had thought for sure that I wouldn't go ahead with the H1N1 vaccine, but I changed my mind. As the days went on, I had begun to fear the swine flu more than the vaccine, so I decided to go with it. Please don't flame me.

I called our pediatrician's office to enquire about the availability of the H1N1 vax and because of Dylan's ol' bonus chromosome, both he and Cassidy fall into the "high risk" category. Our appointment was this morning and so far, so good.

Trust me, I am on high alert for any side effects, but to be quite honest, I feel good about my decision. I think.

Ah. As I lied in bed last night, tossing and turning, I couldn't help but stress the heck out, I mean, ponder this whole parenting thing and how insanely difficult it can be at times. I don't know. I just did not feel...good having to choose between possibly allowing my kids to get sick from the Swine Flu or possibly harming them from a vaccination. Bah. Maybe I'm over thinking this and maybe I'm being dramatic, but still. It's hard. For me, having to make decisions that involve the well being of my children is just. plain. hard.

Time will tell, I suppose. But for now, all is good. My kids have forgiven quite easily and we are happy. I think bopping around in the car on the way home to I Gotta Feeling by The Black Eyed Peas helped all of us.

~

Hold on. You didn't think that I'd be capable of completing a post without mentioning spit up, now did you? Ha! C'mon now!

Dylan's endoscopy is scheduled. You know, the thing that will help us figure out the root of all of his spit up issues?? Yes, that. It will be on November 4th. The one year anniversary of his open heart surgery, naturally.

Thursday, October 22, 2009

A for Effort

Well, I think it's safe to say that I am totally and completely burned out with all of this spit up talk. How 'bout you?

If you can't bear any more of it, please feel free to skip the following update. I wouldn't blame you in the least. Trust me.

So, after talking with Dylan's GI doctor as well as his pediatrician today (why yes, yes I am becoming quite the squeaky wheel), I was informed that some of Dylan's blood work has come back elevated. The elevations were shown in potassium as well as zinc (and somethingelsethatIcantrecallatthemoment) which his doctor said may indicate some kind of allergy and/or irritation in his esophagus or stomach. They are recommending an upper GI endoscopy at this time, which will also include taking biopsies of his tissue. I feel like at this point in time, it is pretty justified, so we are going to go ahead with it in hopes that we will be one step closer in finding an answer for our little guy.

Anyway...

I decided to put Dylan on the floor the other morning. I knew the ramifications may be nasty, but oh well - I let him go crazy - spit up be darned!

video

I'd say he deserves an "A" for effort. Don't you?

Wednesday, October 21, 2009

So.

Dylan's GI results: Normal

Dylan's tired Mama: Discouraged

Tuesday, October 20, 2009

Tomorrow...

...is our appointment for Dylan's upper GI. At this point, to be perfectly honest, I am feeling like tomorrow can't come soon enough.

Because today? Today I am having one of those days.

I am worried about Dylan. Worried about his health and well being. And at the same time I'm worried that when everything is said and done, we will not find any issues and instead will learn that this reflux, this constant vomiting, is something we just need to learn to live with.

Three times in the past two days, Dylan has panicked and choked while vomiting. It almost seemed as though it got stuck in his throat and couldn't move - neither up nor down. After a few seconds, it came up. Out of his mouth yes, and his nose. It was a scary scene, to say the least. Can this be normal? The only experience I've ever had with reflux is this, so I really do not know...

Oh, I am nearing my wits end, I think. I truly may be. My head is spinning.

Nothing is staying down. Every single thing that I feed him comes back up. All. Day. Long. His development is, without a doubt, being severely affected as are his relationships with people. I don't even want to think of the damage that is being to done to his insides.

Sometimes when I feed him, I feel as though I don't know what in the world I am doing. I am suppose to be feeding him fatty foods to help increase his weight, but at the same time, fatty foods do not digest as quickly and with an already obviously slow digestive system, that's not exactly helpful to the situation. There is talk about the possibility of Celiac Disease, so while I am being instructed to thicken his foods with oatmeal and other cereals, I feel like if in fact he does have Celiac, I am certainly not doing his belly any favors by giving him 10 tons of oats and barley a day. His pediatrician said today that maybe he's having difficulty with milk proteins. So, do I feed him milk, soy milk, Pediasure, formula? I don't know.

Ahh. I just hope we find an answer soon. And by soon I mean, like, tomorrow.


*Annoying pity-party over*

Friday, October 16, 2009

And now, an important question...

Is Dylan's hat rediculous?

Or rediculously adorable? (That's not really a word, is it?)




Maybe a little bit of both?


Eh, he makes it work though, doesn't he?

Good. Glad we're all in agreement here. :)

Thursday, October 15, 2009

I wanted to scream today.

I really wanted to scream. Or cry. Maybe even a little bit of both.

Today was the appointment with our GI doctor. You may remember that Dylan has been having increasing issues with massive amounts of spit up? Yeah, so today was going to be the day that we came up with a plan. The day that we'd come just a bit closer to an answer. A reason why he is losing weight and spitting up 25 times a day. At least I thought it was. I showed up prepared. I had been writing notes upon notes over the past week. I wrote down everything that he had eaten. All fluids. I even kept a spit up log. Remember?

Problem was - they were very busy. I'm not so sure they wanted to hear everything that I wanted to tell them. I was shown that indeed he has lost more weight. While looking at the computer screen - "See that dot? See how he has fallen off the curve?". Yes, yes I do. I'm freaked out. Now what?

The nurse thought that we may want to move forward with an upper GI. Yes!! This is what I had thought as well. (Not that I know anything about anything medical, but still.) She went to check with the doctor to make sure she agreed.

'Spose not as she came back with a different plan. A plan that involved doubling his Prevacid and getting some blood work done. She wants to make sure his thyroid is working properly. I told her that we just had his thyroid blood work done 3 months ago, but she wants to have it taken again. She said to make a follow-up appointment in one month so we can check Dylan's weight again.

Ughhhh. But...but. That's it? No upper GI? No...anything else? We're just going to keep going on as we are? 25 spit ups a day, weight loss and all?

Guess so. We headed downstairs for blood work.

An hour later, three hours after we had arrived, we were in the car driving home. No better off than when we had arrived. No plan. I wanted to scream. Or cry. Maybe even a little bit of both. I tried to tell myself that there is really no reason to cry over spit up. I mean really. It's spit up for cripes sake. Yes, it's frustrating. Yes, it requires ungodly amounts of laundry. But you know what? No. It's more than that. It's scary to me that Dylan continues to lose weight. It worries me that Dylan is no longer able to tolerate floor time play. It bothers me beyond belief that he isn't able to just...be! Everything, everything revolves around keeping his food down. I wanted a plan today. I wanted some hope and instead I feel like we were rushed out of the appointment with no answers.

As I was sitting on my couch a couple of hours after the appointment, the phone rang. It was Dylan's GI doctor. She said that they had been talking about Dylan a bit more and have actually decided that we ought to go ahead with the upper GI after all.

Ah, finally. Something! I suppose I'll hold off on my screaming for now as we may just get to the bottom of this after all.

Wednesday, October 14, 2009

Pumpkin Patch Kids

Look who's been hanging out in the pumpkin patch!

Nope, not just Dylan.

But all his best peeps as well!


There is just something about fall. And pumpkins. And spending time with people who understand. Completely.

Sunday, October 11, 2009

What a difference...

a year makes.

We attended our local Buddy Walk today. And so many things, so many of the details, were the same as last year.

This year, just like last year, my Little Ones sat in their same spots in the stroller. Like last year, we registered too late and did not get the official Buddy Walk t-shits, and I ran into my friend Sharon from Brennan's Beginnings, shortly before the start of the walk. Also, Cassidy asked for a balloon (although this year, because she refused to let me tie the balloon to the stroller, in a moment of forgetfullness, or maybe curiosity, it was let go and proceeded to float away to the sky), she started out relatively strong, but eventually got tired and yelled and dropped to the ground when she didn't get her way. Dylan drew people's attention, took a short rest in the stroller, and simply had a fine time for himself. Just as he did the year before.

Today:



Last year:


But the differences, the emotions, now those were far more noticeable.

This year we were quite excited about attending! I remember last year, on the drive there, my stomach was twisted up in knots.

This year Dylan's heart surgery is a memory. No, not a faint one, but a memory nonetheless. Last year, we were living in frightened anticipation.

This year I smiled as I looked around me, for what I saw was truly beautuful. Last year, I studied people.

Last year I was scared. I was overwhelmed. I smiled, sure, for I knew that I loved my baby, but still...



This year I was happy. I am happy. Because the fear and the worry has been replaced with hope. With encouragement and optimism. And love. Yes. Lots and lots of that, too.


Happy Buddy Walk-ing everyone!

Friday, October 9, 2009

I'm officially concerned...

about Dylan's reflux.

***

But first I just have to say thank you all SO much for your wonderfully helpful comments to my boring feeding post yesterday. I have already begun implementing some strategies that you've recommended and will continue doing so. I did want to share this article that was left in the comments section from Alisa. It is from Disability Solutions and is titled, "From Milk to Table Foods: A Parent's Guide to Introducing Food Textures" by Joan E. Medlen. It is specifically written about kiddos with Down syndrome, so I thought that was quite helpful.

***

On to the reflux.

I know that I have mentioned a few (ahem thousand) times that Dylan has pretty severe reflux. We have tried 4 (or is it 5?) different medications with minimal success. This has been going on for months and months and months. So why am I now all of a sudden officially concerned, you ask? Well, because over the past few weeks, it has gotten significantly worse. I have begun keeping a "spit up log" (now doesn't that sound appetizing?!) and have discovered that Dylan spit up about 25 times yesterday and so far today (it's 2 pm) he has spit up about 23 times.

Wow, I really hope you aren't reading this while eating a snack - sorry!

He has also begun losing weight.

The only change, and it's a pretty big one, is that he's been weaned from nursing for a couple of weeks now. I'm wondering if the increase in spit up is due to switching from nursing to drinking milk from a straw cup? Could he be swallowing too much air as his GI nurse just suggested on the phone? Or is it from the change in breast milk to soy milk? I tried using whole milk but honestly could not tolerate the spit up that resulted from that. :Shudders:

I have been told that he will eventually grow out of reflux, but in the meantime...helllllp! I'm worried about my little guy...not to mention I'm completely drowning in dirty laundry!

Thursday, October 8, 2009

A really boring post about feeding...

...but I can't stop thinking about it.

Lately this whole feeding thing has been stressing me out. Everyone says, "Trust your instincts", but to be quite honest, I just don't know...

I just don't know what I am doing.

I wonder, over and over and over again, : Will Dylan learn to eat solid foods when he is ready or is this something that he needs to be taught how to do? How much do I push it? Especially now that he has begun to lose weight, do I really want to make feeding a bigger issue by pressuring him into eating solids? But, that being said, it has been recommended to me by his pediatrician as well as our EI team, that Dylan start eating solid food - real food- food that is high in fat and calories, food that will stay down as opposed to being spit up so that he stops losing weight. Problem is - he's not into real food. At all.

I admit that in the past, I had been taking the super-laid back approach (which may not have been the smartest idea, considering where we are at at the moment...). I would offer him things (crackers, eggs, macaroni), sure, but when he'd turned away or act uninterested, I would stop. Ok, fine. So, I'm kinda sorta still doing that. His therapist on the other hand is a bit more, shall we say, 'aggressive' with the solids. Which is probably a good thing, yet every time she places a rather large piece of food into his mouth, I want to yell, "NOO! STOP!"? It just doesn't feel...right. It doesn't feel natural. Especially when he spits it out and it gets pushed back it.

I am told that the reason he spits the food out each and every time, is because of his tongue thrust. I am told that it is not because he doesn't like the food, but rather he needs to be "taught how to move his tongue laterally.". So, why am I not convinced?

I have gotten so many wonderful suggestions as to what I should be feeding him. Suggestions on how to fatten him up. Toast with peanut butter, scrambled eggs with butter and cheese, avocado, beans, pasta. Problem is - he won't eat the stuff. Whether it's the tongue thrust or whatever, nothing of that sort makes it's way down.

I know it supposedly doesn't matter, but he is still toothless. Might it be that he is just not ready for real food? Is this one of those things that I should back off of and let him lead the way? Or do I need to stop slacking and start teaching him how to move that tongue so we are not packing up baby food for him as he goes off to first grade? Kidding!

Thoughts? Thanks!!

Wednesday, October 7, 2009

Watch this.

I just watched this video on Lisa's blog. It's a quick clip about a high school boy with Down syndrome who was voted Homecoming King. And while that is all well and good, what brought tears to my eyes (ok fine, it was a full-out cry!) was the Homecoming Queen's reaction.


Acceptance. Pride. Kindness. Love.


This is the stuff that fills me with hope for Dylan's future. For I have a strong suspicion that we are in for some amazing things.

Monday, October 5, 2009

It just doesn't seem possible...

...that on this day, 3 years ago, (three??!!) Cassidy was born.

I've said it before,


and I will say it again,


time goes by far,

far, too quickly.
~~~
Happy Third Birthday, Love.

Friday, October 2, 2009

Time

Cassidy and Dylan played together on the floor yesterday.

Which reminded me of this time, 8 months ago, when they played on the floor.
And this time, almost 15 months ago, when they also played on the floor together.

Which reminded me that time goes by entirely too fast for my liking...