Difference is an artist's game

I thought this was beautiful...and I needed something beautiful tonight.

http://community.babycenter.com/post/a972435/difference_is_an_artists_game

What's the matter?

"What's the matter?", my husband asked me as he walked in the door from work. That's about all it took for the tears to start. "I don't know. Nothing. I'm tired.", was my answer. That may sound like a terrible answer, and I thought that it was, until I had a few minutes to process it. Although it may sound a bit...confused, it's actually a completely honest answer.

As I sat there on the couch feeding Dylan, Dave left to take Cassidy and the dogs for walk. It was the first time today that I had some quiet time...some time to process. What is the matter anyway? Why the heck am I sitting here crying? Am I upset because my almost 2 year old daughter brought me to the brink of frustration and beyond all day with her tantrums? Is it because Dylan's OT noticed that his eyes looked as if they may require being looked at by a pediatric eye doctor? Is it because I was reminded by her that he does have low tone and will need lots and lots of practice for him to reach his milestones in which they will most likely still be delayed? Or that because he has Ds and therefore also displays "low arousal"...meaning that he is "slower" in doing things? Or that she reminded me that he needs to repeat his hearing test as he failed it the first 2 times? That I still can't hold him without his head flying back because he can not control it yet? That he isn't smiling? Or that I am worried that if Cassidy does not have children of her own some day, I will not have grandchildren? That my son will get made fun of more than other kids will? That just because Dylan sleeps through the night, certainly doesn't mean that I do?!

Whew. I think that'll do. I think you can see where my thoughts were going. Yeah, so I had my mini-pity-party, ok? And it's been about 2 hours since then and I am ok now. I am back to reality. I love my son. I love my daughter (now that's she's fast asleep in bed!). I love my husband. And they love me. Life is good. Sometimes you just need a mini-pity-party now and then.

Need something positive?

I do. Good thing I found this website called babycenter.com. They have a whole message board dedicated to all things pertaining to Down syndrome. I have found that it is made up mostly of moms who have kiddos with Ds. If you get the chance, check it out. I have already received so much support and encouragement from there : )

I watched this montage today. It was posted by a mom who has a son with Down syndrome.

http://www.portraitsbyj.org/welcome_to_wherever_you_are.htm

I love these inspirational videos...can't you tell?!

Tummy Time

When Dylan's Early Intervention nurse was here the other day, we talked about the importance of "tummy time". I knew that we were suppose to allow babies to practice being on their stomachs, but I didn't know exactly why. Now that I have a better understanding of it, I am committed to giving Dylan lots of opportunities to work on this skill. Tummy time gives babies the opportunity to strengthen their back, neck and shoulder muscles so they can roll over and later, crawl. I also learned that all development comes from the tummy position. If a baby doesn't develop their core strength, they also don't have those muscles to use for breath control, for the tongue moving back and forth and for the ability to form their mouths to do speech. Because of Dylan's low tone, I feel that this skill is going to be very important for him to practice.

Here is Dylan taking a little break during tummy time today. Hey, it's tiring trying to hold up your head, you know!

Blues n' Brews

Today Dylan and I went to the Blues n' Brews festival at Nashoba Valley. Apparently Dylan had a little too much fun for himself...

Check out the little party animal! : )

Cardiology Appointment

Yesterday Dylan and I met with his cardiologist for a follow up appointment. The doctor told me that typically around Dylan's age (8 weeks), most children with an AV Canal Defect will start to show signs of heart failure. At previous appointments we have been told to watch Dylan closely for possible signs of distress, such as: heavy breathing, sweating, over tiredness and blueness around his mouth. I told the doctor that I didn't think I've noticed any of these things yet...I mean sure, he does sweat and he does sleep alot...but then again it's summer after all and he's a baby, so is this normal or is it heart failure...? She reassured me that I would "just know" when he begins to show true signs, so for now it appears that he is doing very well!!

He had an EKG done, which was lots of fun because he is suppose to lie still while they attach a million little sticky things all over his body and then continue to lie there as they try to get a good reading of his heart. Um, yeah. The doctor said that his reading came back ok and that there was nothing completely unusual about it. I am going to have trust her on this as the thing looked like a much too complicated math problem to me.

I asked the doctor a ton of questions and she sat there and talked with me about everything. She told me that the entire surgery should take about 10 hours total - from the time Dylan is handed over to the anethesiologist until he is wheeled out of the room. The actual surgery should take between 4-6 hours. He will mostly likely be in the hospital anywhere from 1 to 2 weeks. We talked a little bit about what to expect when he is wheeled out of the OR as well as his road to recovery.

So, where we go from here is another follow-up appointment in a couple of weeks in which he will most likely be put on medication. Then, the doctor will compose all of Dylan's medical records and present them to the surgeon who will then determine when the best time for his heart surgery will be. It is still most likely going to be sometime in October. They are hoping to wait until he reaches 12 lbs as apparently that minimizes the risk of complications. Dylan weighed 9lbs 7 oz on their scale yesterday, so hopefully by October he will reach 12 lbs.

As I was getting ready to leave, the doctor introduced me to a nice couple and their 3 month old daughter who just had the AV Canal repair surgery 3 weeks ago. We spoke for a while and they were able to give me helpful information as well as lots of reassurance. They were very honest with me by telling me that it is by no means easy, but it's all going to be ok. As I mentioned before, I know that Dylan is going to pull through with flying colors. It just helped reassure me that I may actually be ok as well. : )

Occupational Therapy and other stuff...

Dylan had his first occupational therapy session today. Because he is only 7 weeks old there is only so much that you can do, but yet I am incredibly encouraged that we are starting so early. The therapist showed me some different exercises and movements to do with Dylan to begin strengthening his neck muscles. He is still quite floppy, but works so hard at trying to hold up his little head. You should see him when we hold him - the little guy puts so much energy into holding himself together. I swear that's one of the reasons why he sleeps so well at night! He's such a little fighter...



Tomorrow is Dylan's follow-up cardiology appointment. I am going to make a list of questions that I want to ask the doctor. I don't even know where to begin though. There is so much that I want to know...but yet I don't want to know. The little details scare me. I know that Dylan is going to do great, I really do. It's me that Im worried about! My kids are far braver than I.

Here are my brave little loves.

Sometimes I wonder...

about whether or not to come right out and tell people who I see, that Dylan has Down syndrome. Sometimes when I look at him, I do not see it. Occasionally I do. But sometimes I do not think that he looks like he has Down syndrome. Of course, that leads me to say that sometimes, errr alot of times, I still can not believe that he has Down syndrome. Im not saying that I do not really believe it...or that the tests were wrong. Of course I dont think that. It's just so surreal to me still. I am not at all finding it to be the tragedy that I originally feared it would be. In fact, I am finding it much too simple. I keep waiting for something to go wrong...for something to be difficult. Im wondering if the hard stuff will come if he does not reach his milestones "on time". I think about that, but then I also think to myself - 'Oh well! He'll get there when he gets there...what's the big rush anyway? They all get there eventually, right?' Umm, please remind me that I said this in a few months when Im whining about how Im worried because Dylan is not sitting up on his own. Haha.
Ahh, I digress...
Back to my original thought which was - I wonder if I should tell people that Dylan has Down syndrome. Is it necessary to let people know that? All of the people that I am close with already know, so Im talking more about neighbors, casual friends and colleagues. I guess my answer is no. People will either figure it out or they wont. It doesnt matter to me. If Dylan had a physical disability, I would not come right out and say, "Dylan is in a wheelchair". They would either see that or not...it doesnt matter, does it?
When I think about Dylan, I do not think about Down syndrome. I think about how Dylan is my baby and I love him. He is just like any other baby. I love him just as I love my daughter Cassidy and I would feel no need to point out to people when introducing Cassidy that she is a "typical" child. It just does not matter...to me.

I love this...

I came across this video through the book, "Gifts". Every time I am feeling scared or discouraged, I watch this and feel incredibly inspired. I wanted to share it with you all.

http://www.onetruemedia.com/otm_site/view_shared?p=6786b2ab729375495cd673

Weigh-In

Dylan's feeding specialist came to our house today for his weigh-in. I was a bit worried because he has not taken a bottle in over a week, so I had no way of knowing whether or not he was getting enough milk. Well...he weighed in at 9 lbs 6.5 oz.! So, he is gaining weight and he is exclusively breastfeeding! I am so pleased because from the very beginning, I feel like I was discouraged from trying to breastfeed Dylan due to his diagnosis of Down syndrome. I was told that it was highly unlikely that he would be able to do it because of his low muscle tone. Thank you, Dylan, for proving the doctors and nurses wrong!! I'm telling you, this kid is one true fighter!! : )

Rambling...

I found this woman's blog through the book, "Gifts". She has a son with many different medical issues as well as Down syndrome. I read this today and wanted to pass it along.


http://www.5minutesformom.com/4010/once-upon-a-time-there-was-a-retard/


I don't even really know what to say...I know that I am very very new to this whole world of Down syndrome. Dylan is still so young, so little. I can still protect him from hurtful words right now. One of my biggest worries is how he will be treated by other kids when he gets bigger. I am a teacher - I know how kids can be. Just reading about this movie makes me physically ill. It makes me feel afraid and discouraged for my son because when he grows up, he will have to face people who think that it's ok to make fun of him because he may be different...because he has a different number of chromosomes. It is not his fault. It is beyond frustrating to see that people can be so insensitive...so hurtful. All I can do is hope that I am able to raise him to be happy about who he is. Because I wouldnt change a thing about him. Dylan is who he is and I love every single thing about him - even his extra little chromosome.

Dylan hits the Cape

This weekend was Dylan's first trip to our house on Cape Cod. Because our family also consists of Dylan's older sister as well as 2 big dogs, we had to resort to taking 2 separate cars down there. I drove the babies and Dave drove the dogs! Thankfully, the kiddos were feeling relatively patient on the drive down there as we got stuck in some pretty serious traffic. The weather was cooperative and both kids had a fabulous time! We got lots of help from friends and family and everyone fell in love with Dylan.

While Cassidy played nonstop on the beach and exhausted everyone around her, you can see that Dylan took a more mellow approach to the cape.

weight check and some Dylan faces

Yesterday, our Early Intervention Team (sounds pretty official, doesnt it?!) sent a feeding specialist over to our house to check in with Dylan. She and I talked for a while about how I am in the process of trying to make the switch over from pumping and bottle feeding to breastfeeding. My main concern is that with the breastfeeding, I have no idea how much milk he is actually taking in. With the bottles, I was able to track how many ounces he took at each feeding and I think I was getting pretty reliant on that. The nurse took out her trusty baby scale and weighed Dylan. My concerns are put to rest...for now. He is up to 9 lbs 2 ounces! Go Dylan!! This boy never ceases to amaze me.

And now...here are some of the many faces of Dylan Ross:

A sweet moment

I know I already mentioned that Dylan slept from about 10p until 5a the other night, but I guess I was feeling greedy and wanted even more sleep! Not to mention that he may have slept through the night, but I certainly didnt. Sheesh, I think I slept even less than if he had woken up to feed! I kept turning the light on and checking on him, putting my hand on his chest, touching his head...
Well, after he ate and I changed his diaper it was about 6a and he wasnt in the mood to go back to sleep...but I was. I put him back in his bassinet, which is right next to our bed. He kept squirming and grunting...and eventually fussing. I decided to take him out of his bassinet and lie him next to me in my bed, just so we could snuggle for a bit. I started to gently rub his face and he began to calm down. I continued stroking his cheeks until eventually he drifted off to sleep. The next thing I knew, an hour had passed and I had fallen asleep as well. I woke up a few inches from Dylan's face...I woke to his feet kicking me...he was sound asleep and it was just the sweetest thing. I kissed his cheek and thought to myself, "life doesnt get much better than this".

A few good things

There were a few especially good things that happened this weekend.

One of them was that Dylan and I had some success with breastfeeding. I have learned that it can be difficult for little ones with Down syndrome to breastfeed due to low muscle tone. It requires more effort than using a bottle. I was feeling quite discouraged with it, so for the past few weeks I have been strictly pumping and giving him a bottle. Yesterday, just for the heck of it, I decided to try nursing him and he latched on! Granted, I am using a shield, but still! I was really encouraged to see that he can do it and I think with lots of practice and patience, we'll be successful.
Another good thing was that Dylan got to meet his Auntie Kim and Uncle Chad for the first time! He had so much fun that he slept from 10p until 5a last night!! (Which was the third really good thing...!).

One month check-up and other stuff...

Yesterday Dylan had his one month exam with the pediatrician. I bet this little guy has seen more doctors and nurses in his one month of life than I have ever seen in my...umm...33 years! He did very well as it was an easy appt. with no shots, no pain. He weighed in at 8 lbs 7 oz. and was 20 inches long! Woohoo! The nurse was a little bit concerned about how he was breathing, but after having an oxygen test, all appeared well. The doctor came in to take a look at his breathing as well and told me that Dylan was "probably fine". Yeah, thanks...very reassuring. His next appt. with the cardiologist is on August 20, so I will definitely update his progress at that point. But for now, my baby is healthy and thriving. What else can a mom ask for?

Dylan's Early Intervention nurse came to the house today. She is so nice...so helpful. It makes such a difference knowing that I'm not alone in this.

Lots of people have asked me how Cassidy is doing with her new baby brother. She is doing really well! Honestly! The main problem that we have is that I think she loves him a little too much...a little too hard!

Here is a recent picture of her trying to kiss Dylan. You can see how much Dylan enjoys being smothered to pieces!