This I Believe

Both my mom and brother-in-law, Josh, had heard this on NPR and told me I should check it out. Well, I did and I love it so much that I thought I would pass it along...

It is called, "I Am Capable Of More Than I Think I Am":

http://www.npr.org/templates/story/story.php?storyId=94836671

Just some cuteness

Ahem, yes that is more pink stuff. My boy can pull it off, don't worry.

That's all. Just wanted to share.

Will my heart break and break and break again?

A couple of months ago, Dylan was flailing about on the floor and in the process almost managed to roll himself over. My mom saw it and said, "Oh my gosh! It looks like he's going to roll over already!". It immediately made me think about this part from Jennifer Graf Groneberg's book, Road Map to Holland: Jennifer was at the pediatrician's office with her twin sons. Avery, who has Down syndrome, was trying to roll over and Jennifer proudly commented on it. "Look at that. He's trying to roll! He's even doing more than Bennett. It's amazing." The doctor replied, "They all do that in the beginning. They almost always start out ahead, but eventually, they fall behind. Your heart will break and break and break again.".

I haven't been able to forget this, so a few weeks ago I emailed Jennifer asking her if she's found this to be true. Take a look at her blog, Pinwheels, to see what she had to say about that. You can find it here: http://jennifergrafgroneberg.wordpress.com/

Thank you so much, Jennifer.

Two holes and a surgery date

At our consultation appointment with Dylan's surgeon yesterday, we were told that he has 2 large holes in his heart. I don't understand why we were never told this.

When Dylan was in the NICU as a tiny baby, we were told that he had a hole in his heart. At his appointment with the cardiologist last week we were told that he has a very large hole. Based on what the surgeon said yesterday, he now has 2 very large holes. What is going on here?

As Dave and I were driving home from the appointment yesterday...or rather attempting to drive home in the rain, in Friday afternoon Boston traffic, with 2 very tired and hungry babies, I looked out the window and started to cry. I found that I simply could not wrap my head around all of this information. My son is having open heart surgery. He has 2 very large holes in his heart, one of which we didn't know about? He will be on a heart/lung bypass machine. He will be on narcotics. On a ventilator. Sedated. He will be in the intensive care unit again. Yes, there is a very high success rate - they told us 95% - but I am scared. This is all very real now.

Please don't misunderstand me - I am very hopeful. Ok, extremely hopeful, but scared nonetheless.

Dylan's surgery is scheduled for November 4. Will you please keep us in your thoughts?

Thank you. Much love to everyone who supports us!

Tomorrow...

Well, our consultation appointment is tomorrow. We are going to meet with the surgeon at the Children's Hospital and discuss Dylan's heart surgery. This is the surgery to correct his AV canal defect. We will also be scheduling the pre-op date as well as the surgery date. Wow. Just writing that down made my stomach twist.

I know that I should walk in there with a whole list of questions...the problem is that I can't even begin to think of what to ask. If you are reading this and have some ideas for me, would you mind leaving them in the comment section? I think my brain is refusing to cooperate with me when it comes to this surgery stuff. Denial much?

Anyway - thanks for reading! We appreciate and love you all SO much.

Proud Mommy

Dylan had his Occupational Therapy lesson yesterday, and I could not have been more proud of him! Ok, so my eyes welled up more than a few times...what can I say? I'm a sap.

Here are the notes from his OT:
"Dylan worked very hard! We worked on different positions - belly on boppy, side lying, back. He is doing better with tracking - even starting to move his head a little to track. He worked on reaching with his arms with therapist support."
I am telling you, this was like a totally different kid from the OT lesson a few weeks ago. He appears to be making some really nice gains and I am feeling so encouraged right now.

It's funny...every time I lie Dylan down on the play gym, his big sister has to lie right next to him. Whenever Dylan is practicing tummy-time, Cassidy practices right along with him. When I finish feeding Dylan, Cass will sneak onto my lap and lie on the pillow just like Dylan does. She has been such an incredible big sister. Better than I could have ever expected.
Here they are lying together:

Lily

Today is the day for Lily's heart surgery. She is getting her AV canal defect corrected, just like Dylan will have. Lily's mom, Cathy, is a friend of mine who I met through Babycenter.com. She reached out to me a few months ago and has been a huge support for me and Dylan. Please send all of your positive thoughts and prayers to them today. You can check out Lily's Site for updates as well. It appears that everything is going very well so far!! Yeah Lily!!!

Sweetest boy in the world

Just had to share the cuteness...

Dylan Ross:

"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."

- Dr. Seuss

So, I guess this is really going to happen...

The surgeon's office called yesterday with a date for our consultation. As soon as I answered the phone and heard who it was, I'm pretty sure my stomach tied itself into a knot. I know that this is a positive step for Dylan, I really do. It's just....well you know...open heart surgery and all.

So, the consultation will be next Friday. To be perfectly honest, I am quite relieved that we are finally making progress with this heart surgery stuff. Oh I'm nervous, anxious, and completely stressed out as well mind you! But, I feel like for the past couple of months, it's just been this ambiguous dark cloud hanging over us...we knew that he would need surgery at some point, but everything seemed so wishy-washy. I've been living my life in anticipation. When will he start showing signs of heart failure? It should have happened by now! Wait, is he sweating? Is he sleeping more than usual? Is his mouth bluer than usual? Ugh...I will be incredibly happy to not have these worries constantly swimming around in my brain anymore.

Now we are moving forward. We have a set date to meet with the surgeon who will then give us a date for the pre-op as well as the actual surgery date. While I am not trying to wish my life away, I have to say that I am certainly looking forward to the day when my son is done with this surgery.

Cardiology appointment

Here is my brave boy enjoying himself while getting an EKG. And this was just a tiny little part of a 3 hour long appointment. Good times, good times...

Soooo, I can't quite figure out how I feel about Dylan's cardiology appointment today. I mean, I know I'm annoyed at having to spend 3 hours at the hospital with my baby and my 2 year old (thank goodness Dave was there to help!), but the actual appointment has left me with some mixed emotions.

Dylan weighed in at 10 lbs 2 oz. The Cardiologist was very pleased with this gain. She was surprised as well, because he still does not appear to be showing any major signs of heart failure. She did notice that his breathing appeared a bit labored, but said that that was to be expected. She went on to explain that because he is still gaining weight and is not experiencing heart failure at this time, that maybe the VSD - the hole in his heart - isn't as large as it was when he had his first echocardiogram while in the NICU. Ahem, I don't think I ever actually knew that it was a "large" hole to begin with. For some reason, hearing that made me feel sad. I always assumed that it was a little one because he's always done so well. And to be perfectly honest, I secretly held this teeny tiny glimmer of hope that it would maybe sort of kind of possibly somehow close on its own...even though I was specifically told by a cardiologist that it wouldn't. Hey, a girl can hope, can't she?! Anyways...because he's been doing so well, today the doctor said that there may be a chance that we could possibly put off the surgery until spring! So, this left me feeling quite hopeful...

Until the doctor decided to do another echocardiogram to see what was going on with his heart. An hour later, when the echo was finally complete (poor ol' Dylan!!) we were told that indeed, he still has a "very large hole" and will be having the surgery in October after all. Greeeeat.

Now we are just sitting here waiting for a call from the surgeon. He will call with 2 dates - one date to meet with him and discuss everything and one date for the surgery. Ugh. Ugh ugh ugh.

My poor little man. : (

Ahh...the calm before the storm

Rest up now Little One... because this week is going to be slightly nuts.

On Monday we have the Social Worker coming over to help me out with insurance stuff as well as go over some possible helpful resources. Tuesday Dylan has his occupational therapy session. Wednesday is our follow-up cardiology appointment and Thursday the EI nurse is coming over. Whew.

Oh and yes that is a fuzzy pink blanket on my son. I guess that's what happens when your older sibling is a girl... and when your mom forgets to think long term while shopping for all of Cassidy's baby stuff. Pink...lots and lots of pink.

My beautiful son

It appears that Dylan is now just an old pro at smiling!! Check him out today : )





Here is part of an article that I read from The Washington Post entitled, "Trig's Breakthrough".

"The wrenching diagnosis of 47 chromosomes must seem to parents like the end of a dream instead of the beginning of a life. But children born with Down syndrome -- who learn slowly but love deeply -- are generally not experienced by their parents as a curse but as a complex blessing. And when allowed to survive, men and women with an extra chromosome experience themselves as people with abilities, limits and rights. Yet when Down syndrome is detected through testing, many parents report that genetic counselors and physicians emphasize the difficulties of raising a child with a disability and urge abortion.
This is properly called eugenic abortion -- the ending of "imperfect" lives to remove the social, economic and emotional costs of their existence. And this practice cannot be separated from the broader social treatment of people who have disabilities. By eliminating less perfect humans, deformity and disability become more pronounced and less acceptable. Those who escape the net of screening are often viewed as mistakes or burdens. A tragic choice becomes a presumption -- "Didn't you get an amnio?" -- and then a prejudice. And this feeds a social Darwinism in which the stronger are regarded as better, the dependent are viewed as less valuable, and the weak must occasionally be culled. "

Check out the rest of the article here...
http://www.washingtonpost.com/wp-dyn/content/article/2008/09/09/AR2008090902519.html

Now look up at Dylan's smiling face. This little boy has a life that is worth living...don't you think?

A Real Smile!

Ok...this had to have been one of the best moments I've experienced since Dylan was born. Today he smiled - and it was all for me! For the past few days, I've noticed that he had been practicing perfecting his beautiful smile in his sleep, but this was the first time he truly smiled in response to me. It was well worth the wait. See?!!

On another note...guess where Dave and I went last night? Here's a really obvious hint:

Yep...the Red Sox game! One of the many perks of having Grammy and Papa in town - Dave and Laurie get to leave the house and do fun things together! Ok, so they lost the game in the last inning, but it was still fun!

Lucky

For some reason it has taken me a little while to get here... But as I was sitting on the couch last night with my 2 year old daughter Cassidy, and my sweet son Dylan on my lap, I realized that I am incredibly lucky. I mean incredibly lucky! I know that not everyone is able to experience this kind of love...love that literally hurts your insides. I have experienced this love and for that, I am lucky.

The dark side

Yesterday I took a quick visit to the dark side. I didn't mean to, but I was sitting here reading a thread on babycenter.com about pointy teeth...and that's what started it. Yes, someone was asking a simple question about their baby with Down syndrome and how his teeth appear to be coming in in a peculiar order as well as especially pointy. Someone else responded with a helpful link that goes on to explain how babies with Down syndrome sometimes have differences with their teeth - sometimes they come in pointy and sometimes not at all. I start feeling that familiar icky feeling in my stomach. A few tears fall. I click on a different thread. This one was an article about Sarah Palin. It was actually a good article, nothing to be sad about there, but then my eyes wandered down to the comments section at the bottom. I start reading one that is labeled "offensive". Why did I keep reading it then? Who knows. It talked about the worthlessness of people with Down syndrome in our society. Nice eh?



So, I feel myself slipping into the dark side. I start thinking... Ugh. I don't want to have a baby with really pointy teeth. Or with an especially small mouth and missing teeth for that matter. And the snowball starts...I do not want to deal with filling out MassHealth disability forms. Nor do I particularly feel like calling my insurance company every day asking them to explain what in the world this newest bill means. Haven't we met our deductible yet? Who knows. I am already getting tired of my dogs barking and then escaping out of the house every single time someone from Early Intervention comes over...which is often. I do not want to stress out about muscle tone and trunk strength; about crossed eyes and failed hearing tests. I do not want to listen to people say words like retard, normal and special.



At this point Dylan starts stirring in his swing. I look over and see that he's trying to wake up. I walk over to him and lift him up out of the swing. His eyes open and he looks at me. I kiss him on the cheek, hug him tight and fresh tears start. These are the good tears though. The happy ones. If having Dylan in my life means dealing with pointy teeth and ugly medical bills, then that's what it means. It is all worth it. Every single thing is worth it.

OTs and EI nurses and Pediatric doctors, oh my!

Holy medical people overload! That's how I feel (and I'm sure Dylan feels as well) right now! I know that these people are here to help us, I really do know and appreciate that, but sometimes it's alot. It's just...alot.

So, Dylan is doing well. Yesterday he worked with his OT and EI nurse. He was able to focus on the OT's face and track a tiny bit as well, which is very good progress for him! His eyes have also not been crossing in as much, which is great news as it was a slight concern the last time they were here. The nurse mentioned that it appears as though Dylan is slightly hyper-sensitive - he gets overloaded easily. I am suppose to learn how to swaddle him (is that how you even spell that?) properly so that when he goes into that "spaz mode" as I like to call it, he will feel more safe and secure. Hopefully as he grows and develops more, this will pass.

Dylan also had his 2 month pediatric appointment today. His weight is now at 10 lbs 1.5 oz and he is 21 3/4 inches long! Woohoo! This is great news, as you may remember we are trying to reach 12 lbs before his heart surgery. He received all of his shots and only cried for a little bit. We are suppose to call and schedule a follow-up hearing test with the audiologist as his right ear has not passed twice, but I think we'll wait until after the surgery to go down that road again. All in all, I would say it was a great appointment.


Now...as I was driving home from this appointment I couldn't help but wonder about this icky knot in my stomach. I'm finding that I tend to get this when I am around medical people now. I think it may stem from our experiences of when Dylan was in the NICU. It seemed like every time I was approached by a doctor, I was told something negative...now I'm scared of them - those medical people. I'm scared that they will tell me something else that I do not want to hear.

And another thing that may have contributed to the knot. I noticed that three times, Dylan's doctor used the word "normal". And it was used not in reference to Dylan, but rather in reference to babies who apparently are not like Dylan - these are the normal babies. Yes, I know that like Dylan, I too am hyper-sensitive - especially when it comes to words like this now. I just wish she could have used the word "typical" instead. Because my son is normal! Sheesh, this kid is alot more normal that I am! : )

I wonder if I will ever get used to all this stuff. Will I ever stop being so sensitive about words and the way that people may refer to my son? Will I ever start to feel more comfortable around doctors and nurses and not expect to hear something bad? When will this life that I did not expect start to feel right to me?

It's been a bit of time...

So, it's been a few days since I've updated. Our computer was having some issues as was I. But rest assured...everything is working much better now : )

On Thursday, Dylan's EI nurse came to our house for a visit. Not a whole lot was accomplished with Dylan aside from a few strengthening exercises, but she and I spent quite a bit of time talking about how everything is going. We discussed the option of me beginning to attend a couple of support groups - for both Down syndrome as well as parents of children with congenital heart defects. She also gave me the phone number of a woman who lives in our town who also has a young son with Down syndrome. Of course, these are all great resources...it's just a matter of whether I have the time, desire and/or energy to deal with them or not. She also mentioned that she senses some increasing anxiety from me about Dylan's upcoming surgery. Well...yeah, no duh. Every single day I find that I am falling more and more in love with my son. Therefore, every single day gets more and more difficult to accept the fact that he will be having open heart surgery. Ugh. It's a tough pill to swallow.

But...Dylan did have some great fun on Sunday and Monday! On Sunday, we all went to a local farm so that he and Cassidy could check out some animals. Of course...Dylan slept through the whole thing, but hey, I'm sure it was fun for him in his own little way : )

On Monday, Dylan's cousins as well as his aunts and uncles all came over for a computer repair/cook out party! Come to think of it, he slept through most of that as well. Ah, the life of a baby...lucky little man.

Check out some recent pictures of Dylan and me. Please tell me this - seriously, could he be any cuter? Nope. Didn't think so. : )