Tuesday, March 30, 2010

Spring is Here!

Last week, as I mentioned previously, Phil was away for a business trip. He surprised me by coming home one night early. I was putting the kids to bed when I saw an unfamiliar car parked in the driveway. I checked to see if the door was locked and as I was walking away I noticed Phil in the back seat of the town car! He was able to get back early and surprise me for my birthday! But before he came home we had a busy day with visitors. Nonna and Auntie Steph came over in the afternoon, and then Grandma, Auntie Christy, Uncle Chris, and Andrew came over in the evening.

Jillian has been doing really well with tummy time, always lifting her head very high. She also loves standing and sometimes demands that you help her stand instead of sit. So we put her in the exersaucer to see how she'd do and she loves it! Joey likes showing her all the toys on it too. He's even reverted to putting most of the toys in his mouth again too.

Saturday was another family day for us. Since Auntie Christy is due any day now, we weren't sure if we'd be able to do our usual Easter tradition of making homemade ravioli at Grandma's house Easter morning. So we decided to make them ahead of time this year (sans mimosas). Andrew enjoyed helping with the dough, and Joey was more interested in coloring eggs after the raviolis were done. He prefered using the dunk method of sticking his hand in the colored vinegar water instead of using the egg spoon. Joey and Andrew had a lot of fun cooking, coloring eggs, playing outside, and hanging out inside.

After going home and taking a much needed nap we headed to Nonna and Grandpa's house for dinner. We got to meet Zino and Irma and spend more time with Auntie Steph, Uncle Don, Uncle Kevin, and Uncle Mikey. Of course Joey was showered with attention which he loved, and was worn out by the end of the day.

Finally, on Sunday we attempted the Easter Bunny. It was not a very successful attempt, but we can say we tried. Andrew was hesitant, but at least Uncle Chris was able to hold him and take a few good pictures. Joey was fine up until Phil walked towards the bunny and then Joey grabbed him tightly and started screaming, so Phil pretty much did a walk by and wave to the Easter Bunny. And Jillian? She had fallen asleep in the stroller. We were anticipating Joey having a hard time seeing the Easter Bunny so we let her sleep. When we got home Joey was playing with all of his (and Jillian's) bunnies, so we put them around Joey E.T. style.

Tuesday, March 23, 2010

This week's pictures...

This week Daddy is away on a business trip. So here are a bunch of pictures of what we've been up to this week so far. Today was a nice day so we were able to bundle up and get some fresh air. Everyone has been doing great, but we miss you Daddy!

Bethany Stopped Over!

Last week Bethany, one of our favorite NICU Aunties, and good friend, came to visit us. She brought Joey and Jillian some Easter bunnies, and gave Joey a Winnie the Pooh sweatshirt that lights up. Next time we will have Lilly here too!

Sunday, March 14, 2010

Joshua Roy

We love you, we miss you, we cannot wait to be reunited with you. There are no words to describe how we are feeling today, and every day. It is hard to believe a year has gone by. You never leave our hearts, our heads, or our lives.

Trust in the Lord with all your heart; do not depend on your own understanding. Proverbs 3:5

Here is the video that we put together tirelessly before the wake. (I will warn you ahead of time it is almost an hour long, please feel free to watch as much or as little as you'd like.)

Our Beloved Joshua from Phillip Kurby on Vimeo.

Friday, March 12, 2010

Updated Pictures

I know I am a little behind on updating pictures. Jillian has been doing very well. She is smiling like crazy and giving some giggles as well. Joey is having a lot of fun with her still, although he tells us sometimes that "Baby go night night" and points to her crib so we can put her down and play with him one on one. But he is learning that she is still a lot of fun. He enjoys holding her, giving her kisses, and playing with her a lot. Joey has enjoyed some visits from Aspen (Grandma's dog) and can't wait for the warm weather. We were outside playing ball this week, and Joey was upset when we had to go in. Hopefully the weather will warm up soon and we can all get outside a bit more!

Wednesday, March 3, 2010

Spread the Word to End the Word!

Today (3-3-10) is R-Word day, where we are encouraged to "spread the word to end the word." The word being retarded. By definition retarded means "slow". The campaign here is to stop using the r-word in everyday speech. In CHARGE, the R stands for retardation, not always necessarily in brain functioning, but it can be in growth or development as well (Josh had growth retardation). Clinically I am sure this term will not change, but this campaign is to stop using the r-word in everyday speech as an insult. Some people are born with intellectual disabilities and using the r-word is offensive. Click this link to hear the support on this issue from John C. McGinley (Dr. Cox from Scrubs), he has a son with Down Syndrome.

And here is the site to pledge to stop the r-word.

When you go to the pledge site you can read an article by John C. McGinley that has some great points. He acknowledges that we have the right to say what we want as in freedom of speech of our first amendment, but this is also what he says:
"Verbally assaulting those who have done absolutely nothing wrong and cannot even begin to defend themselves, is an exponentially more egregious transgression. Only bullies and cowards pick on the defenseless. However, it does seem fair to assume that a vast majority of people who use the R-word (i.e. "Retard" and "Retarded"), are not even aware that their language is offensive and hurtful to members of the special needs community. And at the risk of being redundant, perhaps there is some value in setting the record straight: the R-word hurts! And it makes no difference that a person with special needs is not in ear shot when the word is spoken. Using the R-word perpetuates a negative stigma that belittles people with special needs. And the casual nature in which the R-word is now thrown about only makes the impact even more insidious and and the trickle down affect more persistent. The R-word hurts."

So spread the word to end the word!

Monday, March 1, 2010

Jillian is 2 months!

Jillian had her 2 month checkup today. It is hard to believe she has been here for 2 months already! She did really well at the doctor. I kept telling Joey that he had to tell her that it would be ok, and help calm her down with her shots, but Jillian was all smiles and giggles in the office and Joey was the one clinging to me and crying. I guess Jillian will learn soon enough to be scared, but even though I never even took Joey's coat off he did not want to make eye contact with anyone there, even when he got a train sticker from the doctor. Jillian is now 12 pounds, 1 ounce putting her in the 81 %ile for weight, and for 22 5/8 inches for 60%ile for height. The doctor said she is a perfect picture of health and we make a great team in terms of her feeding!

Walking into the office we are always greeted by first names, the receptionist, doctor, and many nurses know us well from Josh and Joey being there monthly since they were preemies, and Josh more frequently because of other concerns. Our pediatrician even came to Josh's wake, and asks how we are doing as a family and acknowledges Josh each time we come in. We had many visitors in our room today because they all had been involved with Josh's care, have seen Joey several times, and were very happy and excited to meet Jillian. Jillian had a great experience at the doctor's office today, and only cried (as expected) when she got her shots. We hope she is still all smiles next time we go!
(Here are just a few pictures from last month, we do have some more recent ones but they need to be loaded on the computer first.)

Joshua's Journeys #32 March Madness

As I have been doing Joshua's Journeys I have been recalling some of the events that happened on those days last year. Of course so much more happened, more appointments, more milestones, more fun and love than I could ever blog about, but that is why I hope to continue Josh's Journeys for years to come. I will never be able to put down in words all the great moments we have experienced with Joshua. I noticed in January I started having a hard time blogging about his bronchoscopy, it was the first time I had taken Josh to Children's and where he would take his last breath on earth. I have been dreading the month of March, knowing the anniversary of his passing is approaching. While I think of and reminisce about Josh more often than you could fathom, I have been very anxious and apprehensive about this month. Like I have mentioned in Josh's Journeys in the past I have talked about things that had happened last year on the same date this year, but as the days get closer to I realize I cannot and do not want to discuss the events of Josh's passing. I know everyone has questions about it. Only Josh, his mommy, and daddy know the horrific events of the night/early morning hour that he passed. Even the doctors found themselves dumbfounded. We have never shared the details of that night with anyone, there are way too many emotions, vivid images, and heartache that may never heal from that night. Over the years I am sure many things will come out from the days leading up to his passing, but we may never be able to share the last intimate moments with Josh. I will say he was surrounded by love, we prayed over him within seconds of his last heart rhythm, and we have learned how to have a relationship with him that grows even though he is not here on earth. We have constant reminders when we look into the eyes of Joey (knowing a part of Joey is in heaven) and Jillian (knowing a part of her was sent from Josh). We love you Joshy and can't wait to be reunited as a family again someday.

Here is a song by Steven Curtis Chapman who unfortunately knows about losing one of his children. He lost his daughter in February and had kept a journal which he later turned into an album. The whole album hits home for me, but this song and "Beauty Will Rise" are the two I love the most and remind me of Joshua the most.

Heaven Is the Face
Heaven is the face of a little girlWith dark brown eyes that disappear when she smiles
Heaven is the place where she calls my name, says "Daddy please come play with me for a while."

God, I know it's all of this and so much more,
but you know that this is what I'm aching for
God you know, I just can't see beyond the door,
So right now,

Heaven is the sound of her breathing deep, lying on my chest falling fast asleep while I sing.
And heaven is the weight of her in my arms, being there to keep her safe from harm while she dreams.

And God I know it's all of this and so much more,
but God you know that this is what I'm longing for
God you know I just can't see beyond the door

But in my mind's eye I can see a place where your glory fills every empty space.
All the cancer's gone, every mouth is fed, and there's no one left in the orphan's bed
Every lonely heart finds their one true love, and there's no more goodbye, and no more not enough
And there's no more enemy, no more

Heaven is a sweet maple syrup kiss, and a thousand other little things I miss with her gone
Heaven is the place where she takes my hand and leads me to You, and we both run into Your arms

Oh, God I know it's so much more than I can dream, it's far beyond anything I can conceive
So God, You know, I'm trusting you, until I see
Heaven in the face of my little girl
Heaven in the face of my little girl