Catching Up! (again)

Look who's decided to join the world of blogging after nearly a week? I swear, that wasn't a planned break. But I can't promise there won't be more. I was so proud of myself for keeping up with the blog for the longest time, and I've really been slacking lately. And it definitely isn't for a lack of things to say! I've had about a million things I could write about, but not the time or energy to do it. I'll get better, I promise. Some day.

Kennedy becomes more and more of a toddler every day, and I'm absolutely loving this age. She is exploring everything around her and learning so much. Although she isn't talking in full sentences or using very many words yet, she gets her point across and she is definitely understanding what we communicate to her. If you ask her to come to you, she will. Tonight, I asked her to go see daddy and she went off to hunt him down in the kitchen. She is understanding more and more commands, especially when it comes to play time. When I ask her to choose a certain toy, or a certain color ball or block, she does. When I ask her to put the ball in the toy, she does. And when you tell her good job, she claps for herself. It's really adorable. One of her favorite games is to follow you all over the house, playing peekaboo behind random walls or pieces of furniture. It's apparently the most hysterical thing. Ever.

Our transition with Physical Therapy providers has been wonderful. Kennedy really enjoys working with Miss Holly, and mommy enjoys the fact that Miss Holly comes to our house, instead of us driving 40 minutes each way. We're hoping to incorporate speech therapy in the next week or two, and if I'm really lucky I'll find someone privately who will also do in-home therapy. After all, will I get anywhere on time once Caleb is born?

Kennedy also had her 15 month well baby appointment this week. I'm happy to report that we are holding on to the typical growth charts at 29 inches and 18lbs 11oz! She's still a peanut in comparison to most kids her age. In fact, 95-97% are bigger than her. But regardless of what size other kids are, my little girl is getting so big! She checked out perfectly and the doctor was really pleased with how well she is doing with her milestones and how well she eats!

Here's a few cell phone pics from the week. I promise, better pictures soon to come.

Mommy, I love pool days. I'm a Florida girl. Just check out my tan.



Mom!!! Don't take a picture of me eating my cookie! And I can't believe you brought me to the store with my piggies looking like this.



Sometimes you just need a late afternoon cat nap.



This really isn't the same as the big pool, but I guess I'll deal. But mom, if you're going to keep getting in, we're going to need a bigger pool!

A lot of Randomness

I promised more updates and more photos this week, and I've once again failed. It amazes me how quickly the days fly by lately. Between chasing a toddler and getting the house ready for a new baby, I'm not sure how I have time to breathe. Especially on days like today. You know, the days when you spend 2 hours chasing a big lizard around your house. Keep in mind, I am seven months pregnant and had a cranky teething toddler on my hip. It made for quite a site. In fact, if there wasn't still a big lizard on the loose in my house, I might even find it comical. Instead I'll be having nightmares of lizards crawling into bed with us. Oh the joys of living in Florida...

It's been quite a week in our house. I'll just give the highlights, with the promise of many more details and photos to come.

- Less than a week after getting the iPad, Kennedy has mastered pointing! She absolutely loves the iPad and if she sees me using it, she usually comes after it.
(Don't mind her bed head or my lack of captions, I still have no good solution for blogging from this thing.)










- At nearly 15 months, Kennedy is FINALLY getting her first tooth! I'm not sure why I was so excited for her to get teeth. She's definitely not been her usual self this week, and I'm thankful to have figured out the reason, but I miss my happy girl! She's not completely miserable all the time, but we've had more fuss and tears in 3 days than we have in 15 months. I'm pretty sure teething has cussed more fuss than open heart surgery. However, fruit pops seem to help a little. (But the $20 worth of teething supplies from Target seem to do nothing.)





- Kennedy has also continued to take off with gross motor skills. In just a few short weeks she's started to transition from sitting, to crawling like a maniac and now pulling up on absolutely everything! Nothing is safe. Gross motor has always been Kennedy's weakness, so all of these improvements are wonderful to see! She also does a great downward dog yoga pose. I guess she's ready for that any day now.
(Excuse the poor photo quality here....darn cell phone, I never have the flash on when I need it.)









-And last but not least, we've made some big changes in our therapy services. Early Steps has finally agreed to provide us with weekly physical therapy, at the expense of our Developmental Therapy. So we've cut that back to once a month and will be taking advantage of their PT services. This will also allow us to integrate private speech therapy. I'm looking forward to utilizing some new resources o Ed the coming weeks!

That's all I've got for now....I'll post some adorable photos of Kennedy and Grandma this weekend when I get some computer time. Now, I'm off to eat some ice cream and make sure there are no lizards lurking under my bed.

Location:A Lot of Randomness

Making Progress

This is a tough subject to write on, because I have to admit, I'm a little bitter about it lately.  Kennedy is doing amazing.  She's rocking it in PT and EI and I'm really seeing a lot of progress since we've started private therapy services.  That said, she's still a long way from walking.  I'm okay with this.  She's happy and healthy and that's what's important to me.  She went through open heart surgery, and came out on top.  In the grand scheme of things, does it really matter when she walks?  She WILL eventually walk.  But I've been feeling a lot of pressure lately.  From people in the grocery store, from friends, from family.  "Is she walking yet?"  "When will she walk?"  "She's so close to walking, she's just going to get up and go."  It's like she turned one and the world expects her to just get up and go.  For a lot of kids, they do just get up and walk.  But for children with Down syndrome, it isn't that easy.  They have things working against them.  Like low tone, short limbs, stretched out ligaments, etc.  She can't just "get up and go."  She can't reach a lot of things to pull up on, even if she wanted to.  She's a champion stander, but she doesn't understand shifting her weight to walk yet.  And she is not yet standing unassisted, which needs to happen before she walks.  These are all things we work on in therapy.  We work really hard.  Kennedy works really hard, harder than "typical" kids have to work to achieve the same thing.  This is why it's so much more special when she achieves these milestones. 

But as a mom, it's hard.  Deep down, I am perfectly content knowing that she will eventually walk.  And that she's doing amazing, for her.  But I hate when other people compare her to other children.  It's not a fair comparison and it's not fair to put unrealistic expectations on her.  I know people don't mean to be hurtful, but as a parent, when you work so hard, and when you see your child working so hard, it does hurt.  A lot.  It's hard enough to see children younger than her doing things that she's not ready for.  I don't expect people to be experts in Down syndrome.  And the strangers, most of them have no clue that Kennedy even has Down syndrome.  But it's very hard to be challenged and have your every word critiqued when it comes to your child.  This is true of any child, not just children with Down syndrome.  Though I think it tends to happen more when you're dealing with a child with special needs.  Of course I hold Kennedy to high expectations.  I want her to be able to achieve everything that other children do.  I want her to walk, ride a bike, read and write.  And she will do all those things, but she's going to do them when she's ready.  All the therapy in the world cannot make her do them sooner than she's ready, it can only aid her in learning what she needs to in order to reach the next milestone.  She's happy and she's healthy.  That is what is important.  In fact, I'm pretty sure I've never met a happier baby.  She has touched the lives of everyone she meets, and I know that she's going to go far in life.  When she's 20 and doing whatever it is that makes her happy, it won't matter whether she walked when she was one, two or three. 

Hey mom! Pick me up!

I'm stuffed, I can't eat another bite of pasta. Take me home to bed.

It's good to know that if I sleep past ten I can get brunch.

So what's the plan today mom?

Weekend Fun! (And a Therapy Update)

I love all the weekend family time, especially now that Kennedy is getting older and can really appreciate the things we do. 

She had mixed feelings over the splash park at Busch Gardens yesterday.  Had there been less "big kids" I suspect it would have been a better reaction. 

Mom...don't let go.  What is this?

It's kinda chilly mom...

This is fun!!

I'm gonna get it mom!

I'm exhausted after that mom!

I'm up, snack time?

Okay, let's go.  I'm ready to see more animals.

Kennedy also wanted to show off how hard she's been working on standing.

Oh monkey you crack me up!

 We're ready to watch the game with daddy.

I've also been meaning to update about therapy all week, but apparently the second trimester didn't bring my energy level back.  Wednesday's Early Intervention did not go well.  In fact, I'm pretty sure it was the worst ever.  Kennedy saw Amanda walk up the sidewalk and was screaming hysterically from that moment on.  It was horrible.  The last 15 minutes Amanda ended up laying on my kitchen floor, between the wall and the table and peered around the wall and observed her.  This worked.  Kennedy sat and played with me, smiled, giggled, etc.  

Fast forward to Friday.  PT day, and boy oh boy was I dreading it.  Kennedy woke up an hour early and was already yawning when we got there.  I was pleasantly shocked.  She rocked it.  She stood, she crawled and she showed off all her skills.  For 50 (yes fifty) minutes!!!  She was over it at the end.  She was clearly ready for a nap.  11am is her usual nap time, and that's not accounting for waking up an hour early, so I was very happy to have made it to 10:50 with out a meltdown.  Fortunately, Anna, our therapist, was thrilled with what we got, and she called it quits.  Kennedy was passed out in her seat before I made it out of the parking lot.  

So, that really leaves me questioning the current situation.  Does she dislike Amanda that much?  Am I better off asking for a new therapist?  Or does she not like people coming into her "space?"  Maybe I'll try another round of EI at the park, and see how things go, and make a decision from there.  My fear, is asking for a new therapist, and them not being able to find one.  Or asking for a new therapist, and getting one that Kennedy and I BOTH don't like.  Decisions, decisions.

Mommy Guilt

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!

Going Backwards....

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. 

He Did NOT Say That

This following is all pretty ironic considering what I wrote about yesterday.  Today was PT day, and I have to admit, I was pretty excited to show him the backwards crawl.  This is a huge step for us...even if it is backward, it's a step in the right direction, right?  Well, he wasn't nearly as thrilled with her backward crawl as I was.  His exact words were, "Well that's the wrong direction.  Do you have a rear view mirror Kennedy?"  And, if I wasn't already having mommy guilt that I don't do enough to help Kennedy, he pretty much told me that I'm not.  Actually his exact words were, "You know, her success is dependent on how hard you're working with her."  He followed that by telling me I need to work harder to get her to crawl forward. 

Just how much can I do?  Really?  I work so hard with her, and I'm so proud of every milestone she meets, no matter how large or small.  I refuse to force her to do exercises 24/7 and I'm not going to spend hours a day doing one exercise that makes her scream bloody murder. 

Do I think I'm not doing enough?  Of course, I always worry about that.  But in reality, I do a lot!  I shouldn't feel guilty.  I shouldn't question what I'm doing.  I'm really looking forward to our visit at Hope Haven next week.  I think that will shed some light on how things are going, and what we should be focusing on. 

(I promise, I'll have some adorable photos and videos of Miss Kennedy tomorrow.)

Thankful for Kennedy (And Other Random Updates)

We've had a pretty busy week and some of you may have noticed, I've been slacking a little in the blogging department.  I think I'm finally taking a much needed break after all of my awareness posts!  I will have lots of pictures tomorrow, which will most likely be posted upon my return from shopping on Friday.

The week was kicked off with another birthday party.  Kennedy once again enjoyed her cake and party hat! 

The crazy bath time baby also struck again.  It's completely hysterical to watch.  But don't give her a bath unless you're prepared to be soaked, and to clean the bathroom.

And who can forget about PT and EI?  I figured this weeks sessions were going to be off to a rough start when Kennedy fell asleep 10 minutes before her PT showed up.  Apparently she thought this was a good way to get out of working.

However, that didn't work.  And for the first time ever, she managed to only scream through half of her PT session.  The rest was all smiles.  I was a little concerned that this meant EI would be a disaster.  After all, what are the chances we could have two successful sessions in one week?  Well, we hit the lottery jackpot this week!  I'm proud to say that for the first time in 6 months, we made it through an ENTIRE session of EI, and we didn't have one tear.  Amanda was really excited, and so was mama. 

Kennedy also figured out how to scoot herself backwards this week.  At one point she ended up off her play mat and against the sliding glass door, and the other time she ended up under the table.  Note - she won't do it when we're in the room.

Mommmmmmy!  Help!!!  I'm stuck!!!

Someone posted a question on Facebook, about what's the ONE thing you're most thankful for.  Of course I'm thankful for my amazing husband and wonderful family. But most of all, I'm thankful for Kennedy.  She has opened my eyes and taught me so much in 9 short months.  She's changed my life in ways that I never imagined.  She's shown strength and determination.  And she's been through more in 9 months than I have in almost 30 years, but always comes out on top.  She's a fighter and I could not be more proud, or any more in love.  I am thankful to be celebrating this Thanksgiving with my husband and my big girl! (And the Grandmas!)  

Kennedy, Marlon and I wish you all a Happy Thanksgiving!!! 

My Big Girl!

Today was exhausting.  I have a lot I could say, but I don't have the energy to type it out!  Kennedy still hasn't adjusted to daylights savings time, and is still waking up at 5am.  Except, she's stopped going to bed early, and isn't going to bed until 8pm.  With little to no nap.  Silly baby!

PT was a disaster today.  She screamed through the whole thing.  And I wanted to scream by the end.  I've just kind of accepted that this is how it will be, but it doesn't make it any less exhausting.  As much as she resists and fights it, clearly we're doing something right.  Look at my big girl playing with her activity table! 

Physical Therapy Success!

I was really planning to take a day off from blogging, but this is way too good to neglect.  Today was Kennedy's eval with the Physical Therapist.  I was really nervous for a few reasons.  For one, Kennedy doesn't have the best track record working with therapists.  Usually therapy involves a lot of tears.  I was also worried because you just never know what you're going to hear.  I should also mention that Kennedy hasn't spent a lot of time around men, so I had no idea how she was going to react to him. 

I'm happy to report, it went well.  Or at least, as well as a physical therapy eval on an eight month old can go.  We had minimal tears.  Okay, maybe not minimal.  She screamed for a few minutes while we made her work.  But for the most part, she seemed to like Larry.  And I was pretty impressed too.  He had a great attitude with her and really encouraged and rewarded her for her hard work.  The best part - SHE WORKED!  She didn't just face plant and cry. 

All in all, he said that he was very impressed with her strength and abilities.  One of the big concerns with Down syndrome is low muscle tone and hyperflexibility of joints.  Fortunately, he said that Kennedy doesn't really have an issue with either.  The diagnosis - DIVA!  Yes, you read right.  She's been diagnosed as a diva, and she thinks it's easier for other people to do things for her.  So, we'll be working on some new exercises, and mommy and daddy will be requiring Kennedy to do more for herself!  However, since the services were approved, we'll now be getting physical therapy weekly.  I'm pretty excited about this, especially since Kennedy seems to respond well to him. 

Oh...and he told us to get a treadmill.  So if any of my local readers are looking to get rid of a treadmill for cheap, let me know (Kennedy doesn't need anything fancy.)  Apparently there was a study done, that children with Down syndrome who use a treadmill for 10 minutes a day, walked six months earlier than those who didn't.  And since we'll do pretty much anything to help her reach her potential, we'll be investing in a treadmill.