Friday, November 30, 2012

It's Beginning to Look a Lot Like Christmas...





Yes, that is a Boxer Angel on our tree.  I think she is delightful.  After all, Boxers are God's favorite dog... :)


Thursday, November 29, 2012

Thankful Thursday

Last week, on Thanksgiving, I told you I was thankful for the love that these two have for each other.  

Here's the proof.


This week, I'm still thankful for that.  They are so sweet together!



In other, unrelated news, my lack of posting has been due to an issue I've been having with Google saying I have used up my photo storage allotment.  After a week of trying to figure out a way around it (without deleting precious photos from my blog!), I broke down and paid for the cheapest subscription.  Since it took me 5 years to fill up the free allotment, this storage should last me a while!  It's still frustrating though.  :(

Friday, November 23, 2012

Attempting to Take Photos of Uncooperative Children, Take 2

We have a beautiful lace-leaf weeping Japanese Maple in our backyard that is a deep purple in the summer and a bright red in the fall.  I thought it the perfect place to get a few pictures of the kids.

Caleb and Abby thought otherwise.  

Caleb flat-out refused to sit there.

Abby sat because she's too  young to realize she can just run away she's compliant like that, but she fussed the whole time.  Fussy Faces don't make for pretty pictures.



I took one of myself, because I sit still and smile when I'm told.






Thursday, November 22, 2012

I'm Thankful For...


These two sweet faces.

They love each other so much.  It is so heartwarming to see the way Caleb bounds off the bus in the afternoon and runs right to Abby, or the way Abby throws her arms around Caleb and gives him a kiss when she wakes up in the morning.  They are truly best friends, and I hope this lasts through the years!

Happy Thanksgiving!

Wednesday, November 21, 2012

Fall

I had such grandiose ideas of my kids playing in big piles of leaves and capturing those silly grins on camera.  Hey, maybe I'll even take a video so that I can record their shrieks of laughter.

That was great...except that they really didn't want anything to do with the leaf-jumping.  Caleb did jump in once, and thought it was fun.  But he didn't want to do it again.


He did enjoy throwing the leaves...


...especially at me!


They spent the vast majority of their time digging in the dirt, but they played very nicely together!



So much for beautiful fall pictures, but I'll trade them in for fun playing in the dirt pictures!




Tuesday, November 20, 2012

Red Shoe Shuffle

I registered our family for The Red Shoe Shuffle last night.  I'm so excited to raise awareness and support for an organization that we love so much.

If you are interested in joining our team, The Joy Runners, we would love to have you!!!  You can register at the link above.  Make sure that you click on our team when you're registering.  

Not into doing a 5K, or not local?  Please consider donating to our team.  All funds raised will go toward the purchase of a new bus for the House so that families can get to the nearby hospitals.

My goal is to raise at least $1,000 myself, and I'd love to see the team be at least 40 members!  That would be amazing!

I wrote this last year after we finished the Shuffle.  I hope it gives you a glimpse into why this is so important to us.


You see, for us, it wasn’t just a 5K to raise money for a great charity. Being there, standing outside of the House that we lived in for so long, walking on streets that I could drive through with my eyes closed, listening to over 1,000 people cheering for the RMH kids that were too sick to come outside the house, watching my brave young friend Brooke sound the starting gun, holding my daughter’s hand to help her walk over the finish line…this is so much more than a 5K.
It isn’t about feeling sorry for sick kids who are away from their homes. It wasn’t gloom and doom and sad faces. It was a celebration of life!
This is hope. This is faith. This is love.
My heart was bursting at the thought of so many people wanting to show love to The House That Love Built. The signs along the course reminded us of the reason we were doing this. RMH families got “We Are Family” stickers to wear so that people could put faces with the cause. Volunteers, police officers, fireman, high school teams, and mascots cheered us on along the way.
If you had told me in late October of 2010 that our entire family would be participating in a 5K to benefit the Ronald McDonald House, I would have tearfully told you that you were crazy. If you had told me that Abby would walk across the finish line holding my hand, I probably would have had you committed! But we did, and she did!

Please consider joining us or donating to our team!  Thanks so much!



Sunday, November 18, 2012

Abby and Joy

Abby's Grammy made her a really sweet little purple nightgown...and a matching one for her doll Joy!  It is the cutest nightgown that totally makes Abby look like she is right out of Little House on the Prairie.


She pretty much wants to wear the nightgown every night.  :)



Grammy also made Joy her very own little quilt and matching pillow...using scraps from the quilts that she has made for Abby!  They are the cutest things!  Abby likes to wrap Joy up in the quilt and rock her to sleep.


She tried her hardest to put that little quilt around both of them!


Sweetness.





Saturday, November 17, 2012

Not a Baby...

In a rare moment by myself, I was standing in line in Walmart and the woman behind me commented on my vast array of baby food.  "Awww!  You have a baby!  How old?"

I smiled and thought for half a second before I said, "Well, she's two."

Slow nod and smile that doesn't quite meet her eyes and the judgmental look settles on her face.  "Oh.  I see..."

I smiled and offered, "She's just not quite out of purees yet."  Then there was awkward silence and a weak smile.

I was thankful for the beep of the signature pad reminding me to sign for my receipt.  Then I hightailed it out of there with my multiple bags of baby food for a child who is not a baby.

Yes, it is hard having a child who eats so differently from others her age.  Yes, we still get judgmental looks and comments.  No, the feeding is not going any easier and she has actually pretty much refused all food since her illness a week ago.  Yes, I'm frustrated.  No, this interaction with the woman at Walmart was not at all helpful.

Friday, November 16, 2012

Therapy Guilt

I came across this post from one of my favorite blogs, Love That Max.  It was exactly what I needed in that moment.

Because of all of the speech and gross motor issues going on right now, my head spins with all of the different exercises we are supposed to be doing.  There are times when I totally forget about the exercises in the craziness of the day until after Abby goes to bed and I have a minute to think!

We do work incredibly hard with Abby, but we're only human and sometimes we forget or get busy.

The speech therapist we saw at our cleft palate clinic gave me some good advice.  She said I need to give myself permission to relax the therapy every now and then and just have fun with Abby.

She's right.

Just like the post above says, there's plenty of developmental goodness in tea parties and playing in a dollhouse without "therapizing" everything.  I've been so worried about the development that I've started to force the therapy.  That isn't fun for anybody and goes against everything I believe about a therapy lifestyle.

This isn't anything that our therapists have forced on us.  It has nothing to do with them and everything to do with me.  They are wonderful and keep telling me to relax.  :)  My new perspective is helping me to take a step back and attempt to do just that.

So this weekend, I'm looking forward to playing outside, visiting a friend, and maybe even a tea party or two.  :)

Wednesday, November 14, 2012

Medical Update

Oh my.  So much has been going on, and I haven't had time to write about it.  Here goes...

Abby has been sounding pretty nasal in her speech recently, so we managed to get an appointment for this past Monday with the cleft palate clinic.  Our surgeon checked the palate to make sure there wasn't a hole that was allowing air to escape through her nose, but she looked fine.

We met with a speech language pathologist at the same appointment, who listened to Abby and felt like it was a breath support issue.  Our home SLP has now given us some exercises to work on with Abby and our physical therapist is also going to show us some exercises to strengthen her core.

On that same day, we went to feeding therapy.  Abby hadn't eaten much of anything since she got sick nearly a week before.  I think she feels like she wants to avoid what "made" her throw up (even though it had nothing to do with it!).  We've been having major feeding rebellion with lots of hitting, crying, throwing food, spitting etc.  Abby is usually fairly compliant, so this is a definite change.  Naturally, she ate great in front of the therapist.  Of course!  Thankfully, she does seem to be heading back in the right direction and I'm seeing less negative behaviors. Tonight, she actually ate all of her food without needing any distractor toys!  Woo hoo!!

Abby had her well visit today and she is officially below the growth chart for weight.  This is more of an issue because she is at the 50th percentile in height, so she really is disproportional.  Our typically laid-back pediatrician told us that we needed to increase her calories so that she can gain some weight, so I'll be faxing the growth chart to our GI tomorrow.  I'm hoping that we can simply increase the calories and not the volume of the formula, because that would be a considerable step back.  We'll see what she says.

We've also been dealing with a whole lot of tantrums recently--all related to Abby's inability to communicate.  She says the same thing over and over, then freaks out when I can't figure out what she wants.  We show her things, ask her to show us, give her choices, etc.  She has also started screaming, "Abby!!  Abby!!" over and over again when she is frustrated.  A few days ago, she did it for 10 minutes straight.  She was totally inconsolable.  It was a really rough three day weekend, but I do feel like she was better today.  Maybe that's because I was at work during the day!  Ha!

On the worst day, Matt filled the bath tub and ordered me to get in and relax.  It was lovely.  I found a little perspective in the form of the latest Family Fun magazine and some steaming hot water.  I did a lot of talking to God, and I realized why all of this is so concerning to me. In some ways, I am more concerned about the communication and eating than I was when she was on a ventilator!  Here's what I realized:

Before, we were too far away from "normal" for it to even be attainable.  Now, we are so close that we can almost touch it.  I just want to get there.

Now that I have had this realization, I've been able to chill out a little and remind myself that two year olds throw tantrums.  It's still not easy, but not everything has to be a medical issue.  My pediatrician also reminded my husband during Abby's well visit that we are used to seeing positive results in Abby fairly quickly.  Everything so far has been relatively fast (although it didn't seem too fast at the time!), so we are frustrated that the language isn't going as fast....but language development isn't fast in general.  It takes nearly 10 years for children to develop all of their sounds, and we are only at year two.

I'm thankful for the perspective.  It's a journey, not a race!  This isn't the typically positive medical update that I normally give, but it's where we are right now.  I'm feeling better about it now, and am reminding myself that a year ago Abby wasn't eating anything by mouth or verbalizing any speech sounds!  We just have to hang in there and keep working hard.

Wordless Wednesday


Ok, so not totally wordless.  Ignore me in this picture and focus on the cute 2 year old clasping her little hands.  :)

Tuesday, November 13, 2012

Caleb's Gala Date

 Caleb's date for the gala was the lovely Abby O., who we have known for a very long time.  

She was actually there to help us take care of Caleb and Abby, but don't tell Caleb that.  As far as he knows, she was his date.  Shh!  :)

They danced the night away, and he may have even asked, "May I have this dance?" when "Call Me Maybe" came on.  The excited words, "Oh, this is my jam!" may have even come out of his mouth!!!  I can't make this stuff up, folks!








He did save one dance for his Momma!


In all seriousness, Abby was a humongous help and we were so thankful to have her there!  She was wonderful about taking Abby and Caleb to the Green Room for a few minutes when the talking got a little long, and waited on the wings while we spoke just in case we needed to send an antsy little person off stage...we did!  Plus, she's just a super fun girl who goes with the flow and put up with tight quarters in our room for the night.  

Welcome to the family, Abby!

PS:  I love Caleb's expression here!  So noble!



Monday, November 12, 2012

These Are My Children

 These two pictures just totally capture my children.  

First, there's Caleb, as James Bond.  
The hand on the lapel and the mysterious face were alllll him.

Annnnnnd then there's Abby, my wild child!  
She was going nuts on that dance floor, jumping up and down and twirling herself around.  


My life is never boring.  If I am in need of some entertainment, I just find my kids.  

Sunday, November 11, 2012

Abbyism

I think I can officially post my first Abbyism!

At our feeding reevaluation on Thursday, where lots of therapists and doctors observe Abby eating and make suggestions, Abby was less than cooperative.  I handed her a cup of milk and told her to take a sip.

She glared at me, put the cup back on the counter, shook her pointer finger at me, and scolded, "I don't want my milk, Momma, OKAY??"

It was probably the clearest sentence she has ever said, and the therapists all erupted in laughter.

That's Abby!

Saturday, November 10, 2012

Gala Goings-Ons


Ready for the play-by-play of the Gala program?  Warning: there are lots of pictures!!

A children's choir opened the program by singing a personalized version of "Seasons of Love" all about the Ronald McDonald House.  It was very cute!

The lovely Sandy Pagnotti, executive director of RMH Baltimore (and beautiful inside and out!) shared some remarks.


Side note:  There have only been 3 directors in 30 years!  Doesn't that speak of the dedication and love these women have for families?!?  

Extra side note:  That's our sweet, beautiful friend Elizabeth in the picture with the directors past and present!


This is sooooo cool...this is the VERY first family to ever enter RMH, 30 years ago!  They somehow located them and they were able to share their story.  




Joe Ehrrman, former Colts football player, was the man responsible for building RMH 30 years ago in memory of his brother.  Without his financial support and vision, none of this would have ever happened!


4 Families joined Joe on the stage and shared their stories.  They were all beautiful and inspiring.  At the podium is John, who became suddenly paralyzed 3 years ago because of a rare disease that attacked his spinal cord.  The doctors told him he would never walk again, but he is!  I love those stories, don't you?!  John decided to look forward to his intense therapy weeks by giving each week a dress-up theme...like Disney Villains, Famous Bettys, etc.  Now you see why he is wearing a teal vest and bow tie with a crazy light-up hat!  :)  He is such a bright burst of energy and Caleb adored him.  


This family lost their daughter Lindsay in a car accident.  Every year on the anniversary of her passing, they load up the car with supplies for the House and give a check for $10,000 from their foundation.  They have also just launched a new program called Lindsay's Kitties, where every child that comes to RMH will be given a stuffed kitty in Lindsay's memory. 


This is the Buckles Family.  The twins were born conjoined at birth.  Although they were successfully separated, one of the twins has permanent damage to her spinal cord.  In addition, the oldest daughter has a tumor on her spine and will most likely be paralyzed as well.  Their mom, Melissa, is such a strong woman and we are blessed to know them!  (Yes, she's got a baby less than a year old too!)  



You've already seen the pictures of our part, so the last portion of the gala was the premier of the music video I shared in an earlier post!  They invited the staff and many of the families in the video to come up on the stage.  


Wooooooo!  I know there were a whole lot of pictures to scroll through, but I hope you enjoyed getting to see the Gala in pictures!  If you didn't, you're probably not reading this anyway.  :)





Friday, November 9, 2012

Gala Decorations and Views

 The gala committee did a phenomenal job with the decorations.  There were so many tiny details that did not go unnoticed with us!
There were pictures of kids as the backdrop of the stage--we knew almost all of them!  I loved seeing those smiling faces!

Each place setting had a menu with a different child's picture and story on the back.  Gala-goers got to read about 800+ different children that have walked through the doors of RMH!  You may remember that one of our friends recently lost her son Malachi, who was a fellow trach kid.  When they sat at their place at our table, Malachi's sister had his picture and story at her place!  It was such a sweet moment for them.


Whether they meant to or not, the gala colors coordinated perfectly with the colors in the carpet!  It really looked nice with the yellow, red, and blue.


These trees lined the hall of the hotel where the cocktail hour was.  There were 700 pictures of kids hanging from the sparkling branches, and it was breathtaking.  This picture does not do it justice.  Each photo was hand-cut and I can only imagine how much time it took to do this!  I absolutely loved it--my favorite decoration by far!


Can I just say that only The Ronald McDonald House would bring their therapy dogs to a formal gala?!?  I LOVE THIS!!!  What an awesome way to show people what life in the House is like!

This was a glimpse of what the cocktail hour looked like.  Yeah...a bit crowded!  I grabbed my glass of red wine* in one hand and Abby in the other, and we high-tailed it out of there!  

*No, I did not pull a Shelton Cooper during my speech and go up there intoxicated!  I drank my one glass of wine over three hours, thank you very much!  

Thank goodness for the green room for the RMH families!  They had coloring books, crafts, and snacks to entertain the kids during the waiting game.  We hid there during the very crowded cocktail hour.



Charm City Cakes made this ridiculously cool cake for the House.  They are so good for the House and make cakes for them all of the time.  If you look closely, there are SO many details that depict what goes on at the House.  It was so cool!!!

I

This is obviously not a great picture, but it does give you an idea of the number of people there during the dinner service...which was fancy, fancy food, I might add!  After a salad of butternut squash and shredded beets over a bed of arugula with goat cheese sprinkled on top (which, for the record, I loved...but it was lost on my boys!), we had filet mignon and a crab cake.  Matt got two (reportedly amazing) filets, and I got two absolutely delicious crab cakes!  It was a win-win situation!



The servers were so sweet and accommodating.  I think they would have brought Abby just about anything she would have eaten!  :)  They brought her a little plate of fruit, and she happily munched sucked on a strawberry while I ate my dinner.  Yes, I realize how dangerous this was with the white cuffs on that dress, but it worked out okay.


They even had rock candy for the kids at the end of the night!  (Matt still thinks that these may have actually been sugar stirrers for the coffee that we never saw.  He may have been right, but Abby thought it was rock candy and thoroughly enjoyed it, so I'm going with that!)


Next up:  The play-by-play of the Gala in as many photos as I can gather!  :)






Thursday, November 8, 2012

I'm Gonna Make This Place Your Home

Ronald McDonald House of Baltimore's very first music video!  It's just about the perfect song for The House That Love Built, don't you think?

Wednesday, November 7, 2012

Tuesday, November 6, 2012

Ronald McDonald House 30th Anniversary Gala

The gala was...amazing!  I have so much to share that I am going to break it up into a couple of different posts!  It was such a celebration of 30 years of supporting and loving families through some of the toughest times in their lives, and we were thrilled to be a part of it.





It was such an honor to share a little of our story, along side of our beautiful friend Tammy.  You may know her better as Brooke's mom, and she did a wonderful job of sharing about Brooke's battle.



Our role during the gala was for our two families to share our stories, ping-pong style.  We then transitioned into telling a little about the amazing support of the two families who were to receive the Spirit of Children Award.  Our two families had the honor of presenting these two families with the awards.



We are so thankful to the Paterakis family and to the Maryland McDonalds Owners' Associations for all of the support they give to RMH.  THANK YOU for loving children!!