Happy Heart Day Bennett!!!

Today, we celebrate!

One year ago today, our sweet boy had open heart surgery. He was just 11 weeks old and weighed 10 pounds. I'll never forget that morning when the anesthesiologist came in and said it was time. Mike and I walked with the doctor and nurse while I held Bennett in his tiny CHOP gown and a blanket my sister gave him. We went down the elevator in silence, stepped off and the doctor said "I'll take him from here." I said, "This is it?". He shook his head and I handed my tiny little baby, who was sleeping soundly, over to him. It felt terrible to give my peaceful baby over to these doctors and to know he would be in pain in a few hours. It was the hardest thing I've done to this day. As he walked away with Bennett I just hugged Mike and cried. Handing your child over for surgery, open heart surgery, is not easy. {Warning, some pictures may be graphic}

This was right before we took our walk with the anesthesiologist.

Right after surgery.

First time holding him after surgery- day two.

This was tough to see when they first removed the bandage. Just knowing what they had to do to get to his heart but it's healed so nicely and honestly, I don't even think about Bennett's heart anymore.

And of course here he is exactly one year ago today.

Amazing what these doctors can do.

We will see the cardiologist in November-that will be a year since we got the "See you in a year!" clearance. We hope and pray Bennett will not have to have another surgery to repair a valve but it's a slim possibility down the road.

For now we are just thankful for his repaired heart and so thankful for his "Happy Heart Day!"

So yes, today we celebrate!

My Little Baby Boy...

is starting to look like a big boy!

It makes me kind of sad because the other night I told Mike I just want him to stay this size forever!

He's so cuddly and small and when he sucks his little thumb, lays on my chest and plays with my shirt or hair so gently, it just melts my heart.

Have I mentioned I love this kid??:)

Oh and no, we don't cheer for the Vols but we sure look like we do in these pics!

Well, I have a few random updates:

Feeding- No change (it's only been a day-LOL) but I will be trying all the tips I received and I did put a call in for a feeding eval. Just couldn't sit back anymore and I'm hoping this person is good. I really don't want to waste time with someone that isn't up on good techniques but we'll see. Really wish we had a Talk Tools therapist near by! Thanks sooo much for all your tips!!!

Hearing- I took Bennett back to the ENT today to check his ears after his double ear infection and he passed the hearing test in both ears and no fluid!! So we'll go back at the end of August just to see if there is anymore fluid build up but the doctor said it's a good sign that his eustachian tube is able to clear the fluid out so we may hold off on the tubes. He's also making lots of new sounds so that's good!

Misc.-I'm in the middle of a mini makeover of my kitchen so I'm excited to share pics of that! Yesterday as I started the project I got this major headache and then started throwing up for the rest of the day. The headache didn't go away until midnight last night! But I'm fine today- I've never had a headache so bad that it made me throw up but I know my sister and her son has had this. Anyone else experienced this? It's awful!! So needless to say my project was put to the side but I'm hoping to finish it up in the next weeks or so- stay tuned!!

Lil' Sis Designs- I am making new items almost everyday for my fall/winter line so if you're not familiar with the children's clothes I make, visit my facebook page or other blog- both are on my side bar!

That's it for now but Friday is a special day for our little man- his heart surgery was a year ago on the 6th-can't believe it, time has flown...

Looking For Some Hope...

First off, just wanted to say thanks for all the love you gave on my last post of Bennett crawling, we love putting things out of reach and watching him go now and we're so proud of him! But it's nice to know you all are proud of him as well, you're so sweet!;)

Okay onto this next topic, if your child has never had a feeding issue, you may want to skip over this post ;0

While I am SUPER happy with all the things Bennett is starting to do, there is one thing that is starting to get to me:

Bennett is now 14 months and still not self-feeding...

~BIG SIGH~

Here are some of the things going around in my head:

• Ainsley had a rough time with feeding so while this is super annoying frustrating, I'm not nearly as stressed as I was with her.


• But Ainsley did eventually feed herself and I'm pretty sure she was doing it before or at a year old.


• His pediatrician thinks we should go ahead and get a feeding evaluation.


• His OT wants to hold off because she is working on it and thinks he will get it.


• I'm torn because part of me thinks he needs a feeding specialist to evaluate him and make him miraculously feed himself real solids (ha-ha) and the other part of me thinks that I really don't want to add a fourth therapist to Bennett's schedule and maybe he will get it, eventually. And like everything with him: HE'LL DO IT IN HIS OWN TIME!

So Here's what Bennett can do when it comes to feeding:

• He loves his baby food and we can all see that the boy is not hurting in the weight department:) {I think this is why I'm not super stressed-Ainsley was so tiny so I really thought she would wither away when she wouldn't eat}


• He loves his bottle and sucks 80z down in no time.


• He can feed himself with a spoon a couple of times during a feeding session although he prefers me to do it.


• He will hold his own straw cup and drink from it.


• He will munch on a graham cracker, bitter biscuit and mesh feeder.


• He will tolerate some lumps in his baby food like cottage cheese, chicken salad, carrots or whatever else I can sneak in there but he does gag a little and gets mad when he notices a big lump.


• He will let me put his hands in baby food, pudding, etc. and put it to his mouth-although this is extremely hard for me since I'm a neat freak but I'm doing it so he'll get the concept of touching the food and bringing it to his mouth and to feel the different textures.

I recently took him out of the enormous Graco highchair that was swallowing him up and moved him to the table in a booster seat so that his little feet could be flat on the chair-I read that having their feet supported helps them to self feed-no such luck with that yet.

Here's what he won't do:

• He won't pick up ANY food that is put in front of him ie: cherrios, puffs, small pieces of food, pieces of pancake-totally turns his nose up at this.


• He won't really chew any food that I try to put in his mouth and tuck into his cheek. He gets mad and starts signing "all done". Or he chews with a disgusted face and spits most of it out and then signs "all done".


• He won't even touch food put in front of him like a cupcake-he knows the difference between food and a toy and will happily play with the toy but gets mad at the food-other than a graham cracker, bitter biscuit or mesh feeder and even then he's got to explore it, turn it all around, dangle it in the air, before he munches on it.

Strangely enough his favorite "toy" to play with while waiting for his food is the Nuk brush and chews on it and has no problem with me putting it in and around his mouth.

So, I know of a few of you that have these exact issues but who else is dealing with this and is there hope? Whose been in my shoes and did things get better? Did you do it on your own or seek a therapist? Is this common among kids with Down syndrome? If so, why? Also, I don't think Bennett has reflux anymore, he was on Prevacid for a while and I stopped it because he doesn't really spit up much and tolerates his bottles without screaming or pain. Oh and he's never been on a feeding tube or had a g-tube so I feel like he doesn't have an excuse as to why he's having these issues! And he has like 8 teeth- 4 of them being molars!! He has the tools to chew but won't!!

Looking for some hope here and trying hard not to seek out another therapist!!!

WE HAVE A MOVER!!!!

First, why is this such a big deal? I know my fellow DS moms know why but to those that don't have a child with special needs, milestones like this are HUGE! Almost all kids with Down syndrome have low muscle tone so the physical milestones usually take a lot longer to accomplish compared to typically developing children. Months can go by and you don't see much change and sometimes you wonder will they ever do it? Even though you know they probably will but it seems soooo far away. So even though Bennett is not a speed demon when it comes to crawling-yet- and it's still just an army crawl, he decided that a simple green stick, basically, was what would be his motivator and he wanted it.

I am one proud mama right now, I cannot lie. Join us as we celebrate!:)

So here he is in all his glory: Bennett "crawls" for the very first time: Turn your volume up!!!

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My Love of Shoes...

continues to thrive...

I mean, how could I resist?

Pass up cute, little, red converse? I don't think so.

Sure, he may play with them now, but come fall...

He'll be stylin'.

Seriously, the rollie, pollie legs are too much, in a good way;)

Wordless Wednesday-One Day Shy of 14 months...

♥♥♥♥♥

Swimmin' and Stuff...

This past weekend Ainsley decided to throw off the "swimmies" and show us what she could do. We have no idea where this came from because even with Mike and I having extensive swimming/coaching/swim instructor backgrounds, she hasn't let us really teach her how to swim. I'll try to casually teach her something and she'd rather play or say "that's too hard!" Until this day...

Photo and video editing at www.OneTrueMedia.com

Again, came out of nowhere but we're very proud of her! She ended up swimming the longer length of the pool and swam over the "scary" deep water and only had to stop once! Bennett even clapped for her! Good swimming Ainsley!!!

In other news, Bennett has a double ear infection and may be getting tubes at the end of the summer. I'm actually all for it because I want him hearing to his fullest potential and he's not hearing at a normal level right now, according to the test done at the ENT's office. He has fluid in both ears so if it doesn't clear soon, he'll probably get the tubes. He's still very happy though and "talking" up a storm so you would never know his ears hurt. {Kids with DS tend to have smaller ear canals so fluid doesn't clear out at easily causing most doctors to go straight to ear tubes before it can start affecting their hearing and speech}

And in very sad news, my Aunt Allene passed away, rather suddenly over the weekend. She was my dad's oldest sister and will be missed terribly. I have such fond childhood memories of my Aunt Allene and staying at her house on the lake with cousins during the summer. One of the most caring and fun loving women I know. I could go on an on about all the sweet little memories I have at her house and of her. She really was a special lady.

We love you Aunt Allene and we'll miss you so, so much.

***Edited***

I also want to ask you all to pray for Bennett's buddy Parker- he is just 2 days younger than Bennett and will be having his open heart surgery tomorrow. His mom's blog is Parker's Purpose so if you get a chance, please leave an encouraging comment and let them know you're saying a prayer for their sweet boy. Thanks so much!!!!

Child Proofing In Our Future?

Perhaps one of the good things about having a baby with Down syndrome {I say one because there really are a lot more;)} is that since it takes them a little longer to do things, you don't have to worry about them getting into stuff, as quickly as other children and you kinda get used to that. Like, I can plop Bennett down on the floor and unless he decides to have a rolling fest, I'm pretty sure he'll be in the same general area if I step away for just a minute.

Well, now that he can sit himself up, things that used to be out of reach while laying down are suddenly at perfect trouble making height....

Obviously I caught him before he decided to try this new thing out. He was just staring at it and you could tell he really wanted to touch it. And just look at this little face...

Pure trouble.

"You just wait mommy, remember...I'm a little boy and little boys are very curious!"

{for the record I have no idea what is all over his onesie- we're working on self-feeding if that tells you anything and I think more food gets on his clothes than in his mouth;)}

Bennett's Favorite Thing To Do...

So Bennett has been doing this for a few weeks now but it was always a mystery as to how he did it...until this past week or so and I finally got in on video. He does it all the time and will go from laying on his tummy to pushing up to laying back to his tummy and likes to do it often! I think he's proud of his new skill and he shows that by his clapping;)

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He has become quite the "wannabe mover" because he's always leaning out of my arms now like he's going to go somewhere when he gets down. This happens especially at the pool, he literally tries to crawl from my arms into the pool-so funny!

So hopefully now that he's mastered this, the next video I share will be him crawling! Hopefully within the next month-just maybe??

Bennett Meets Anna!!

On Saturday we got to meet another blog family!! It's so funny how things happen because I was reading Anna's blog- Banana Pants and I noticed that they had pictures taken for the Littlest Hero's Project by the same photographer that we will be having in September. So I contacted Lori (Anna's mom) to see if she liked this photographer and told her that we must live close since this photographer was assigned to both of us. Turns out we were less than an hour away so we scheduled a day to meet up and what a perfect day it was!

Here's some pics from our fun visit to Anna's house...

Anna is such a sweet little girl and crawled right up to Bennett to figure him out. There was patting of the tummy, the shoes and the head-she really liked his hair:)

Lots of hugs and a few sweet kisses;)

Bennett wasn't sure how to handle all this attention from Anna.

But they got along just fine and it was fun to see a child a little bit older than Bennett (Anna is two) doing things that I'm excited to see him do one day. Anna got around just fine and was such a great eater and she knew so many signs!! I'm hoping Bennett picked up on some of her skills;)

Oh and she has the prettiest blue eyes!

Ainsley and Harper had a great time with Anna's older sister Paige, playing dress up...naturally.

It took some time but big brother Charlie came around to playing with the girls and by the end of the evening the big kids were having a blast playing "star wars" in the yard. Harper cried because she didn't want to leave;(

It was so nice meeting you Lori, Jonathan, Charlie, Paige and sweet Anna!! Thanks again for welcoming us into your home and for a wonderful evening!

Disney Tips!

In no way am I saying I am a Disney pro, these are just little tips I learned while going last month, some things that I wish I had done, some things I think we did right and some things I'll do next time;)

So, you're going to Disney? My #1 tip: Don't go in the summer! Ha! Just kidding.

These next few tips pertain to those going in the summer.

As we all know, Florida is H.O.T-HOT in the summer but I had no idea how hot I would be. It just happened that this was the best time for us to go so we did and don't get me wrong we had a blast but we were HOT. So some things I would have done differently are:

Wear better clothing.

I saw many women walking around in what I would call "running attire" which I am very accustomed to since I run and I thought to myself -if you're going to sweat, you might as well sweat in stuff you're used to sweating in. Wish I had thought of that! It's not like I wore pants or uncomfortable clothes but a sports bra with a cool tank and running shorts would have been much better.

Another thing I wish I would've thought of:

Bring our own cheap fans!!!

We were desperate people, as were the millions of others there and we paid a whopping $17 for this little fan that sprays water and cools you off at the same time. It was worth it but I over heard someone say you could get similar ones at Walmart for next to nothing. We were all fighting over this little gem and Mike wasn't about to buy another one- I don't blame him but it sure would have been nice if we each had our own.

Another thing that we could have saved a bit on:

Ponchos!!

It pretty much storms every afternoon in Florida in the summertime- I knew that but just wasn't thinking!! So we went to one of the many Disney stores there and bought our ponchos and again I overheard someone say you could get them at Walmart for next to nothing!

Bring your own ponchos if you're going in the summer!!

Okay, as most of you know we did not bring Bennett along and I'm so glad we didn't because again it was HOT! It was just too hot for babies but if you must bring your little bambino along in the summer months bring one of these:

A fan! Attach it to your stroller. We had one when we went to Dutch Wonderland in May. It helps a lot and you can get them at Babies-R-Us and I'm assuming Walmart. Oh and of course Disney sells them but you're going to pay a lot for it.

Now, on to some things that pertain to any time of year:

Are you on the fence about Bibbity Bobbity Boutique? I was because as girly as Ainsley is, she doesn't like her hair messed with a lot and pulled back tightly and Harper could care less so I was afraid that I would fork out all this money and I would hear complaining for the rest of the day. A couple of friends recommended a breakfast (do the breakfast-not the lunch-American vs. Norwegian food) at Epcot where you could see all the princesses. So we signed up for that and I decided to bring our own (much cheaper and perhaps not quite as nice) dresses for the girls to wear to the breakfast. They LOVED it! They got to see all the princesses, dress up for a bit and eat yummy food-what's better than that? No fussing over tightly pulled hair or "I'm hot in this dress!" I'm happy with my decision to forgo the Bibbity Bobbity Boutique.

Here they are at the breakfast-only princess we never saw, accept from afar was Jasmine. I heard she is hard to see for some reason.

Now onto some hotel tips, fast pass tips meal plan and park hopper tips.

Hotels: we stayed at Caribbean Beach and really liked it. Several of our friends stayed there and liked it too. The pool was fantastic with multiple water slides and an awesome kiddie pool so for the summertime it was perfect. The rooms were decent-nothing spectacular but ours had beds that looked like pirate ships and other pirate looking things but you don't spend a ton of time in your room so to me that's not the most important thing.

If you stay at the Caribbean Beach Resort- try to get a room close to the food court. My friend Renee suggested that but we booked it too late I guess and we were a little too far from the pool and food in my opinion.

If you want to spend a little bit more or maybe a lot more- stay at the Grand Floridian! We had two of our character meals there and it's gorgeous. It's right next to the Magic Kingdom but again, you will pay more for this fancy hotel.

Meal Plan: We signed up for the meal plan and the thing we didn't realize was that the 4 character meals we had, counted as two meals so we ran out of meals by the end of the week and had to pay for a couple. So pay attention to the meal plan you choose if you're staying on property that is.

Character Meals: This is you and your kids preference. If you have little girls, I highly recommend the Breakfast with the Princesses at Norway in Epcot-again do the breakfast unless you and your kids like Norwegian food. We also enjoyed breakfast at the Grand Floridian where we saw Pooh Bear, Tiger, Alice, Mary Poppins and the Mad Hatter. Other meals I've heard were great that we didn't book in time were Chef Mickey's and Cinderella's Round Table- you need to book these way in advance.

Fast Pass: Mike was the fast pass expert but he said it really wasn't hard to figure out once you got there. Basically you go to the big rides, pick up a pass and it tells you to come back within a certain time frame but if you want another fast pass for another ride you have to wait until a certain time to get it-err something like that. He said the people there are very helpful and you just need to plan out your day a little so you can get back to some of the big rides that have long wait times.

Park Hopper: We did the park hopper and it's well worth it but for our kids ages, Magic Kingdom was by far the best place, followed by Animal Kingdom-we all loved Animal Kingdom. The park hopper gives you a lot of flexibility and if you have older kids it's definitely worth it.

Strollers: I had no idea how much walking we were going to be doing at Disney! Just to get from the bus stop to the entrance seemed like miles! So we brought one umbrella -mainly for Harper in the airport and then rented the double stroller for the week that they have there. Even though Ainsley is 5, you better believe she was in that stroller due to tired little legs. Near the middle of the week we started bringing the umbrella to the parks because Harper was so tired and did not want to walk from the bus station to the entrance! So we had the double and then I pushed Mike's book bag in the umbrella-it worked for us. Believe me, you do not want to carry a tired 3 year old after a long day at the park-the umbrella stroller was a life saver.

The Magic Height: We've determined it's 44". 44" will get you on just about every ride. Ainsley was 43" so she missed out on some good ones and I was hoping her bow would help but no such luck.

Some other little tid bits that seemed to help our trip was eating lunch and dinner and odd hours like waiting a little and eating lunch at 3- not as crowded or dinner earlier or later. Also, this may seem silly but I dressed the girls alike every day-1)because I'm like that and I think it's cute;) and 2) it really was easy keep track of them with so many people there- not like I let my children run wild but there are a ton of people at Disney World and to lose a child-I can't even imagine.

So there you have it. Like I said, no pro just tips friends gave me and things we learned while there. If you have the chance to go, there really is nothing like seeing it all through your children's eyes and every bit of money you spend is all worth it.

4th of July Weekend!

Another of 4th of July has gone by and this year was a little different from last...

here's little Bennett, just 6 weeks old last year and we were all nervously awaiting his surgery date. I think I constantly checked him for symptoms of heart failure and was sure he would get sick.

But here is my happy and healthy boy this year!

Bennett LOVES the camera and it's always easy to get a smile out of him! {and I must say Harper is getting better at her smiles!}

Okay, so he didn't want to smile much with his pirate gear on. We had a pirate treasure hunt for the big kids and Bennett was our baby pirate;)

Nope, he didn't like it too much. But the other kids loved it! Ainsley and Harper had the best time with their cousins Micah and Ty (my sister's kids), fishing, riding the jet ski, swimming, zip lining, playing pirates and basically just being kids.

I finally got Bennett to like his float and he enjoyed just cruising around the pool, watching the big kids jump in all around him.

Here's my sister and her cute little family. We don't get to see them very often so it was great visiting with them and I can't believe how big our kids are getting!

My parents were busy the entire time cooking, playing with the kids and making sure everyone was having a good time so I didn't get a ton of pictures of them;( but thanks again mom and dad for hosting another 4th of July vacation for us!!