Saturday, July 27, 2013

NICU Reunion

Today we attended our very first NICU Reunion. The nurses did an amazing job pulling this all together for the families that were there. We got to see lots of our nurses who took such great care of our babies way back when, and we even ran into another family that was in the NICU the same time we were. To be in that room today was an honor and blessing. Surrounded by miracles.

Here's the photos from today - There's us in front of the model of the hospital.
Bottom left is Dr. K (I call him Addison's lifesaver)
Above that is Dr. D (she was in the OR with me and gave Addison her first breaths)
Top left corner is Nurse M - She always kept it real and kept a smile on my face
Top right corner are some of the night nurses L & T - L prayed over Addison one of the very first nights and we'll forever be grateful for that.
And last but not least Sister C - She was sent to pray with us before my csection and visited the NICU often to pray over Addison and Blake. She was also an amazing support and comfort.

I am so glad we got the opportunity to attend today and see everyone. Dr. K kept saying how remarkable it was to see Addi and Blake and how well they are doing. He also said that sometimes the toughest part of his job is to save these babies as small as they were and then learn that they live with a lifetime of disabilities, but you never know going into it what the future might hold. So for him to see such a positive outcome it was rewarding for him. He gave us a great reminder of just how fortunate we are to have Addison and Blake and the strides they are making. I will never ever forget meeting him for the first time, the night they were born. He rushed into our room to tell us that Addison may not make it and ask just how far we wanted him to go. Dr. K remained by her side that night and was still there the next morning. He did all he could for her, and the next morning all he could say to explain was "she is still here and we will take it minute by minute". Minute by minute is how many of our NICU days went - and the fact that he was there made a huge impact.

Next to Dr. D - Dr. K probably spent the most time with Addison (and Blake) in the NICU, so much time that I am will to bet A & B recognize his voice. He also became a huge support and insight later down the road and I will forever be grateful. Not just for Dr. K but for Dr. D too. As well as all of their support staff. 

If any of my Mercy "family" is reading this - let me say it again. We love you all, for all that you did for us - and all that you continue to do for those families who need it most. We'll never be able to repay you for the amazing gift of life that you gave to our children and cared for them in the most precious ways. Thank you just doesn't seem like enough. I sincerely hope that each and every one of you knows how much you mean to us. (UMMS family this goes for you all too - you all played a BIG hand in Addison's care during the end of our NICU stay as well.)

Tuesday, July 23, 2013

Preschool Part 1

Today was our big "phone interview" about Addison, Early Intervention (EI) and (gulp) Preschool. In PA, EI goes from birth to 5, but at age 3 it transitions from "in home" to "on site". Currently Addison gets OT, PT and SI (Special Instruction) a few times a month at home - or the park, at a restaurant, or any other setting she may struggle with. At age 3 it will then become an educational setting and look more like prepping her for what will be expected when she starts Kindergarten with a side of any PT/OT/Etc., provided that she qualifies for it. Or it could become on site where I'd just take her in for appointments for PT/OT/Etc. Just because she qualifies now, does not mean she'll qualify for preschool. Different assessment and rules. And yes I realize it makes no sense whatsoever as to why if she doesn't qualify for preschool but does qualify for PT & OT still that I would then have to take her in for her appointments vs her coming here. (And I know some places actually do on site therapy from birth, but that's not ever been the case for us. I am greatful for that.)

So today we talked about what I should expect in the coming months as they prepare for this change. And we scheduled her formal preschool eval. That will happen in Nov (when she is 2yrs 9mths). I will find out that day if she qualifies for anything further and how that will be handled. I cried at the end of this phone call because um, yeah...I am not ready for my babies to go off to preschool these two are not ready for preschool.

Now - some of you maybe wondering about Blake. As for now we have a few options. Currently he receives no EI services (he was discharged shortly after his first birthday). He part of what they call their monitoring program here in PA, where I fill out questionnaires periodically in regards to his development and if they see concerns they will offer an eval or if I have a concern in the interim I can request an eval. To date, he has had no developmental concerns. At age 3 we will have him evaluated under the preschool guidelines to see if he qualifies for services at that point (unless we have a concern sooner). 

If he does not qualify (and Addison does) then we have a few options. This all really depends on Addison though and what parts she is eligible for. A.) He could be allowed to partake in the same preschool/class as Addison and be the "class model". B.) They would go to separate preschools. C.) We can opt to forgo EI Preschool and enroll them both in a different preschool that is still a part of EI but also allows for community kids with/or without delays. Now should Addison NOT qualify for any services, we'll be looking into preschool at the same preschool as mentioned in option C or elsewhere.

So that's where we currently stand with all that. Did I confuse you? Because I am still scratching my head about some of this.

If you have experience with EI in a different state - how does it vary?

Monday, July 22, 2013

Philly Cheesesteak Stuffed Peppers

After feeling like we were having the same meals over and over and getting bored with dinner I decided it was time to spice it up and try some new things. So off to Pinterest I went and came up with a stack of dinners that sounded yummy and I thought we'd love.

Stuffed peppers is a huge favorite in this house, but one that doesn't happen often. (I prefer my Grandmother's and if she doesn't cook them, I don't eat them lol.) So when I found this gem, I was very excited to try it because I also love cheesesteak.

And this was the end result:

I did change things up a little though instead of thinly sliced roast beef I used SteakUms (in the package there is two slices of meat per paper, I used 6 of those so 12 slices total) and I don't like mushrooms so I left those out. I also added a little bit of mayo on top of the first layer of cheese and omited the garlic, butter and olive oil.

8 oz. Thinly Sliced Roast Beef  12 slices of SteakUms
8 Slices Provolone Cheese
2 Large Green Bell Peppers
1 Medium Sweet Onion
6 oz. Baby Bella Mushrooms
2 Tbs. Butter
2 Tbs. Olive Oil
1 Tbs. Garlic – Minced
Salt and Pepper – to taste
2 Tsp Mayo
Slice peppers in half lengthwise, remove ribs and seeds.
Slice onions. Saute over medium heat with meat and a little salt and pepper.  Saute until onions are tender and meat is no longer pink.
Preheat oven to 400* ( I stuck the peppers in the oven while it preheated because the first batch I made before Hubby got home, weren't as tender as I like and I didn't want to burn or over cook them by adding longer cook time once stuffed. Once the meat was done I took them out and stuffed them).
Line the inside of each pepper with a slice of provolone cheese.  
Fill each pepper with meat mixture until they are nearly overflowing. 
Top each pepper with another slice of provolone cheese.
Bake for 15-20 minutes until the cheese on top is golden brown. 
They turned out delicious. Hubby said, "It's filling and tastes better then a cheesesteak sub, unless we are talking a REAL Philly Cheesesteak", which if you know my husband, that's saying alot. He likes his carbs/breads. One kiddo (Blake) did not love the peppers but ate the filling - by golly I think I found ONE thing this kid doesn't eat. Addison on the other hand ate almost all of hers. 
I am also looking for meals that can freeze or cook in the crockpot - these stuffed peppers do not fall into that category but they seriously were so simple to make that I think we'll be seeing more of in this house. My goal with all of this is to eat out less even when our schedules get busy or things get a little complicated with the kiddos, because let me be really honest... some nights trying to cook and entertain them can get interesting.
Follow along as I will be posting more recipes that we're trying hopefully we all won't be disappointed. And PLEASE feel free to share some of your favs too!

Thursday, July 18, 2013

The Best Day of My Life

No it's not the day I got married (though that comes pretty close). No it's not the day we found out we were pregnant (probably a close second or third). IT'S THE DAY WE BROUGHT ADDISON HOME!!! That day happened two years ago today!

After a long grueling 153 days in the NICU when we wondered and worried about things no parent should ever have to face, we walked out the door with not one baby but TWO.

Bringing Blake home on May 26th 2011 was by far a great day as well, but this day stands alone in it's own right. It was THE MOMENT we waited and fought for since seeing two pink lines and two heartbeats. Our family was finally together all under one roof. I'll never forget laying down that night and staring at a monitor screen this time not one with beeps and numbers, but the video monitor showing two babies in their cribs sleeping. I didn't sleep much but it was worth it. We were both in all our glory. Knowing the next morning we wouldn't have to get dressed and drive anywhere to see our babies. They were home, together, where they belonged. As Hubby often says, "Our world hasn't been the same since."

In the last two years we've laughed, cried, worried even more. But more then that we've continued to watch miracles unfold. We brought home a baby girl with a feeding tube, a feeding pump, a Cleft Palate, and major sensory issues. Today we've got a happy two year old girl who rules our world (with the help of her brother), one who can on any given day eat any teenage boy to shame. No more "bells and whistles". She's conquered surgery after surgery and came out on top. I don't think there is anything she cannot/won't do.

Last year this day for me was a new beginning of sorts. Many talk about first birthdays post NICU being the turning point, where you can breath that sigh of relief. The emotions of it all lifts just a little once you get past all the recaps and flashbacks. And it's true their first birthday did bring a lot of closure. But it wasn't until this day that I felt like we had really "made" it. It was the day that marked the end of all the "firsts" where special days were concerned. This was in a way where happiness began. I still have moments where it can be hard or I'll look back and get overwhelmed. But it does get better. This year, my feelings are so different then they were this time last year. We've come so far since then. And I am thankful for that.

Each year we planned to celebrate their "Happy Homecoming Days" in some way. A way to remember how far they've come and celebrate the life we've been given, and this year is no different. We'll smother her with love and thanks for all that she is and all that she will be. Happy Homecoming Day my sweet princess.

Wednesday, July 17, 2013

Beach Babies

One of the many things we can be thankful for is being close to the beach (well sort of). We'd been planning a week long vacation before September but decided when we had the chance to take off for the weekend. It's not often we get a few days together and we wanted to make the most of it. So off to the beach we headed (again) and this time we stayed over night.

I am not sure why but the littles were up til TWO am!!! 2 AM - do you hear me? Shew! They did enjoy it all though.
Mr. Blake is ready for the beach and the sand, just keep him from the water.

We drove thru a place called Assateauge Island were the horses run wild. They come right up to the cars. The kiddos loved it. Addison wanted to bring them home.

I love this one of Addi girl. We were crossing the bridge to the salt air and sand. 

My whole world.

Building Sand Castles

More horses

Breakfast at Daddy's Favorite Buffet

What's your summer been like? And cool vacations or stay cations? I'd love to hear about it!

Monday, July 15, 2013

Back to Blogging

The thing about blogging is that - well sometimes life happens and somethings get pushed to the side. I won't promise it won't happen again. But for now, lets catch up!

Since I last posted one toddler decided to attempt a climb out of her crib. And almost made it. So this happened...I cried a little. They did not. I also took it as an opportunity to create a toddler/big kid room for them since we never really got to have an official nursery and when we moved here we just worked with what was already going on in their room. I am happy with it and they are in their Disney glory.

Its rained or been gloomy here for a few days off and on. I snapped this one of Blake after he got huffy that he couldn't go play in the pool in the rain. Poor kiddo.

This one might also be a fav... EYE <3 U! ;)

And ofcourse Princess Addison enjoying the kiddie pool on 4th of July. She cracks me up!

In a nutshell... We've all been super busy. I've even missed some gym time (and still debating what to do about that situation as I mentioned in my previous post) but it's super busy and I've still stayed pretty active. We'll see how this next week goes!

Coming up on the blog : Our mini vacation to the beach. Check back soon because you won't want to miss this!