It seems like Kennedy decided this week she'd start hitting all sorts of milestones. This weekend it started with the Cheerios. Today she started clapping! We've been working on this for awhile now, and she's been putting her hands together, but tonight it all started to click, and she did it over and over again, and even when we asked! Then she was sitting on the bed next to me, and she decided she would use my legs to pull herself to a stand! Of course, standing on the bed isn't all that easy and she plopped down on her butt pretty quickly, but she still did it - and completely on her own! She tried again, but only made it to her knees. Either way, I'm so incredibly proud of her. And did I mention that her smiles and giggles melt my heart more and more every day.
Here's some pictures from our trip to the park today.
Mommy I really love to swing!!
Can I have a park in our yard for my birthday?
I guess mommy's letting her guard down with germs. She never used to let me lick poles.
In trying to take advantage of all the nice weather and activities in Florida, we decided it was the perfect day for Kennedy's first trip to Busch Gardens. It's a little ridiculous that it took us 11 months to do this, since we live practically around the corner. I can't even tell you what a wonderful time we had!
Kennedy's favorite part was definitely the Sesame Street film. She's never seen Sesame Street, and typically I'm pretty against her watching TV, but I may just make an exception every now and then for some Sesame Street. I wish I could have recorded the way she reacted, because it was absolutely adorable. Unfortunately we were in a theater and it was dark. She was standing on my lap squealing and screeching, arms flying and reaching for the screen, and she was dancing around like crazy. I've honestly never seen her act so crazy! In fact, I don't even remember what most of the show was about, because I was so busy watching her! She loved to see the animals, and even got to go on her first carousel ride!
As I've said numerous times, when you have a child with Downs syndrome you truly appreciate and celebrate every single milestone, no matter how big or small it is. I'm proud to announce that Kennedy has made huge improvements this week on her fine motor skills! We've been working very hard on her pincer grasp, and her favorite thing to practice with is Cheerios! We have ALMOST mastered it. But what she has mastered is feeding herself Cheerios! She's using her middle finger and thumb - so I suspect that she'll start using her index finger pretty soon! Either way, I can't tell you how proud of her I am. When she started "feeding herself" Cheerios, she used to go face first into the pile. Then she moved to grabbing handfuls and shoving them in her mouth. This is a HUGE accomplishment!
I'm so excited about this Busch place you keep talking about mom!
Mommy, those alligators aren't going to get me are they?
Is it time for the show to start? I can't wait to see what this Sesame Street stuff is about!
Well this is different....I don't have one of these at home.
Mommy, these things are funny. Look at their big noses!
Mommy, I'm exhausted, I'm going to nap while you and daddy eat.
What are THOSE? And why are they so loud??
Well this is different, I'm not sure what to make of this Elmo guy.
(Don't mind the poor image quality, I was taking pictures from behind the B.G. photographer...and mine still came out better!)
I got hugs from Elmo!
This Big Bird character is interesting. I got his finger.
I really think I like Elmo. He's short like me.
Okay, okay, I'll look at the camera.
Mom look!!! There's that Elmo guy again!
Hey mom - look, I've got a Cheerio in my hand, headed right for my mouth.
Everyone warned me how going places would be harder and take longer when you have a baby. Silly me thought it was because you had to pack for the baby, take breaks to feed and change the baby, and oh yeah - carry around a whole lot of extra stuff.
No one told me that the reason it takes so long to do everything is because you can't go ANYWHERE with out people flocking to you. Kennedy makes friends every where. She draws a crowd and has people talking to us her everywhere we go. The grocery store - people stop me in every aisle. And that's just other shoppers. Kennedy has made friends with all of the employees, and I feel like they should announce over the intercom *Kennedy's here!* when we walk in. It's adorable, it really is. Her smile just radiates happiness and everyone says how adorable she is. We were out to dinner last weekend, and she was flirting with the couple behind us. And four men at a table across from us never stopped staring at her. And then there was the group that stopped us on our way out the door.
As much as it takes me an hour to get through the store, and I can't eat dinner in public with out people staring at us, I never get sick of hearing how adorable and beautiful Kennedy is! Speaking of how adorable she is....
Look Mommy, I'm practicing for when I have a sister or brother.
I'm going to give the baby kisses. (Please stop taking pictures did you not see my bed head?)
Wow. What a difference a day makes. My head is spinning from everything that's happened in the past 24 hours. Some of you may remember I wrote a post on our decision to decline prenatal screenings with this pregnancy. We were firm with our decision and I was amazingly calm about the potential for another birth diagnosis.
Yesterday at my appointment with the midwife I was shocked to learn we would have to consult with an OB because Kennedy's history brought me into a risk category. I discussed it at length with my wonderful midwife and felt comfortable with the fact that I would have to have a level II ultrasound to look for soft markers for Down syndrome or a heart defect. Unfortunately this also meant that if there were concerns, I would potentially have to follow through with an amnio. The more I thought about this, and talked to my husband about it, the more nervous I got. Not about having another baby with Down syndrome. But about having another baby with medical complications, which is clearly a higher risk when a child has Down syndrome. Then there was the potential that the level II ultrasound would be fine, and we could still have a shocking birth diagnosis. I absolutely do not want to risk out of care with the midwives, but at this point it seems inevitable that we could end up with a prenatal diagnosis, and now my anxiety level is at 300. After much research, consideration and discussion, we have a new game plan.
I'm waiting for a call to schedule an appointment with the Maternal Fetal Medicine physician about 1.5 hours from us. We'll be consulting with her, in order to obtain the MaterniT21 test. This will tell us with about 99% accuracy if the baby has Down syndrome or not. Best case scenario - we find out that the baby does not have Down syndrome, and we are able to continue care as planned, as long as there are no cardiac concerns that would prohibit it. Worst case, if we find out that the baby does have Down syndrome, we will be risked out of the birth center. Down syndrome doesn't scare me. But the health issues that can come with it, do. And so does the idea of risking out of my midwives care. After they played such a huge role in Kennedy's birth, and the postpartum period, I cannot imagine them not being a part of this pregnancy. I do have a game plan in my mind, if that's what it comes down to. We had a wonderful experience at the hospital where Kennedy's heart surgery was performed, and in order to avoid the stress and tears that our NICU experience provided us, I would not hesitate to drive that far, if it meant having a better experience. But in the end, hopefully it doesn't come down to that.
So for now, we wait. Oddly enough, I was okay with waiting until birth to know whether or not this baby had Ds, but now that the wait is only weeks away, my anxiety level is through the roof over it. Maybe as the birth got closer I would have felt this way anyway? Who knows. Hopefully, they will be able to schedule the appointment in a reasonable time frame, and 8 days after having the test completed, we'll know what to expect, one way or another.
Fail. I don't have much to say. It's been an exhausting weekend, and I didn't even do a good job of getting great pictures. I'm really glad I have an iPhone, because otherwise I'd be in serious trouble. I'm DETERMINED to take out my "real" camera and get some good photos this week. I also need to start thinking about her *gasp* one year photos! How is that possible???
But in the mean time. Here are some adorable photos.
What's this stuff called mom? Cottage cheese?
I'm still deciding, but I think I like it. And it's fun.
Get over the germ factor mom. This table feels really good on my gums!
Can someone please tell me what's taking so long to get my food?
Wow. 11 months. I'm sitting here chatting with a friend as I type this, and I feel like it was just yesterday I was chatting with her, telling her that I thought I was REALLY in labor. I remember the moment so clearly. I was so excited to meet my baby girl and was also completely oblivious to just how much my life was about to change. And 11 months ago, I was sitting in the NICU holding my baby girl, trying to comprehend everything that had happened in the 18 hours since she had been born. If you would have asked me where I'd be 11 months from then, it sure wouldn't be here. I thought I was faced with an impossibility. Down syndrome? Open heart surgery? I couldn't handle all that. I didn't have the strength. I was more scared than ever. And yet somehow, we've made it. We've had ups and downs and we've had our share of challenges. But I wouldn't change it for the world. Okay, okay, maybe I'd make some of the challenges a little easier. After all, I am really sick of fighting for EI services. I remember telling my husband on the way home from the NICU that we would have to plan things out differently. We always thought about having a second baby once Kennedy turned one. Obviously we would need to wait longer. Kennedy was going to need every bit of our attention and we would just have far too much going on to think about another baby so soon.
Boy was I wrong. I quickly found out, mostly after Kennedy's heart surgery, that life really wasn't all that much different than we had expected. Here we are, 11 months later, and nearly 13 weeks pregnant with our second baby. I was right, we would have to plan things differently. We just decided to move it up a little bit. Kennedy has done absolutely amazing. She's the happiest and most easy going baby, which actually makes me a little nervous for her sibling. But I'm so excited to see her and her new sister or brother together. I know she's going to make a great big sister. She's truly the light of my life, and I love her more than I could have ever dreamed. Her smile and her giggles just melt my heart on a daily basis. It has been so much fun to see life through her eyes and to celebrate each and every accomplishment she makes, no matter how big or small. She will always be my baby girl, but today, as I dressed her in her 12 month outfit, and didn't even have to roll up the pant legs, I realized just what a big girl she's becoming. I'm so proud of her.
And here's the pictures I promised. More lousy cell phone pics. I'm determined that next week I will be better about pulling the real camera out again and taking some good photos. For now, these will have to do....they still show all of her cuteness. (Even if they are a little blurry from the residual slobber of her chewing on my phone.)
I'm pretty sure by now, everyone knows that Kennedy isn't a fan of EI. And she NEVER shows off for Amanda. In fact, she does exactly the opposite of what Amanda wants her to do. Yesterday Amanda kept trying to get her to draw on her Magnadoodle. It was a no go. She also kept trying to get her to raise her arms up. That was also a no go. But literally seconds after Amanda left, she did both. I made sure to text her pictures, immediately.
See mommy, I can draw with my pen.
Was this what she wanted me to do?
What's so funny mom? Do I have something on my face?
Look mom! I'm a big girl. My 12 month clothes fit!
Can we skip learning to crawl and just stand? Maybe go right to walking? I like this better.
This is different!
I think I like it....
Oh I'm not sure mom. What did you say this was? An orange?
Oh the guilt! If you have kids, you likely know what I'm talking about. I've decided there will always be mommy guilt. For one reason or another. I'm constantly feeling like I'm not doing enough for Kennedy. Or that I'm not pushing her enough. Or making the right decisions about therapy. I'm pretty sure there would be mommy guilt for one thing or another, even if Kennedy didn't have Down syndrome.
Today's mommy guilt is about therapy. I've been fighting and fighting for PT with out success. Not that I'm giving up my fight, but I've decided to go private for the time being. I don't want to waste any more time. We had an eval at a pediatric therapy center this morning and it went really well. They agreed with everything that the state evaluators said. We'll be seeing them weekly for PT, and hopefully K works better for them than she does for our Early Interventionist. Unfortunately, it's not looking likely. On my paperwork I wrote that she's a "generally happy child." Well, she showed the side of her that's rarely unhappy for the majority of the session.
She showed that side again this afternoon during our Early Intervention session as well. This wasn't even just putting up a fight, it was real tears. I know that I'm doing the right thing by pushing her, but there's something about that sweet little face and the tears running down her face, while she cries "mama" over and over and over again. It's days like today where the stress and anxiety of it all really hits me. I wish that she didn't have to work so hard for thing, and I wish that I didn't have to watch those pleas for help over and over again during each therapy session. Today, she refused to draw on her Magna Doodle, and wouldn't raise her arms above her head. But with in minutes of Amanda leaving, she did both.
I have some adorable photos, but the computer is being ridiculous tonight, so look for those tomorrow when we celebrate Kennedy's 11 months!
Kennedy has learned something new! We've been working on peek-a-boo for awhile and I think she's finally starting to really get it. She always thought it was funny when we played peek-a-boo with her, but today she decided to play with us! Pictures are worth a thousand words, so I'll let the next few speak for themselves.
Seriously, it doesn't get much cuter than that. Okay, okay...maybe it does. Kennedy has been working a whole lot on her standing. She thinks it's much better than crawling, and her EI and I are starting to think that she might walk before she crawls. She loves standing and she loves playing with her big yoga ball.
I can't believe my little girl is almost 11 months old! Plans are in full swing for her first birthday party, and it's all so surreal how quickly this year has gone and how far we've all come.
Have I mentioned lately how happy I am that Kennedy is "mobile?" However, she's still going backwards. And I think at this point, it's safe to say that we're both over it. I think she wants to crawl forward as much as I want her to. She's constantly stuck under or between something, and I'm constantly having to remove her from these places. Today was the wall unit in the playroom.
I've tried everything to get her forward. I've tried bribing her with phones, computers, and even food. Today, I decided that I'd try leaving her where she was. Maybe being stuck under the wall unit would encourage her to crawl forward. Well, she sure tried. But sadly, she was only able to wiggle herself out a little and sideways. At least she got one leg free. It's a start, right?
One of these days she's really going to shock me! I suppose now is a good time to mention, we have no more PT. If you remember several weeks back, I posted about how Kennedy's PT insulted me over her backward crawling. I decided to request a new one, since he was also very inconsistent. Well, long story short, they have denied her services all together now. I have been fighting for weeks, and last week I attended a meeting where I insisted that they do a re-evaluation, since her first eval was at 6 weeks. Well, the good news is that she scored REALLY well. She was in the lower end of average for all skills, and fell just slightly below in motor skills. We knew that's her biggest delay, but apparently not a big enough of a delay to warrant additional services. In fact, they told me if she didn't have Down syndrome we wouldn't qualify for anything. As much as I'm thrilled that she's doing so well, I can't help but feel like we're losing out on something really important. After much arguing, they finally agreed to have a PT consult with our Early Interventionist. She doesn't think that's going to do any good, but my plan is to be back on the phone with them in a few weeks if there's no improvement. I'm also looking into private therapy. Unfortunately, it's not a very cost or time effective solution. The closest pediatric PT is about 45 minutes away.
I just ordered the book Gross Motor Skills for Children with Down syndrome, and I plan on really stepping up what we're doing at home. I've been working with her, but I'm no professional, and I don't know what exercises to do unless someone shows me. So now I'm going to count on the book to show me. This doesn't mean my fight is over, but I'm quickly finding out that I'm not easily getting my way and I'm losing precious time.
Here's some other pictures...that don't involve being stuck under furniture.
Kennedy had lots of fun with her big cousin Carla who was visiting from New Jersey this week.
Kennedy has also taken her eating to a new level. She's refusing lots of the basics and becoming a real picky eater. She's very specific about her tastes. Her favorite is still hummus and pita bread. But tonight's refusal to eat macaroni and cheese, led to me giving her tacos and avocado. Which, as you can see, she loved.
I've said it before, we never take advantage of everything that Florida has to offer. I'm trying to be better about it. When Marlon's cousin told us she would be at Clearwater Beach for a conference, we found it the perfect time for a quick getaway to the other side of the Bay. After all the stress of therapies and Early Intervention this week, this mama was ready for a break! (I'm saving that drama for another post.) And anyway, we all know what a beach baby Kennedy is, and even though it was a bit too cool for swimming, she had a blast! It was just what we needed. A day to forget about Down syndrome. I've spent my week obsessing, crying, and stressing over therapies and how much I'm doing or not doing for Kennedy. It was so great to take a day and not worry about any of that! It will all be there Monday.
Mom, sand is really fun. But it tastes funny.
I can't believe there are swings at the beach!! Life doesn't get better than this!
View from our room.
I really love hotels mom. Can I please have one for my birthday?