Tuesday, April 27, 2010


For the last several months, life has been stressful and perhaps even more stressful than Jason and I actually realized. In January, we found out, unexpectedly that we were pregnant. We hesitated telling others for so many reasons, but perhaps the biggest reason was because we were scared. We were scared that this baby would have a heart defect, like Grace. We were scared because this baby was unplanned and with Grace and where she is at, it is going to be a lot of work on so many levels. And the list goes on and on---

Well, we are pleased to announce that this baby's heart is healthy!!! Well 90% healthy so far, we'll know more next week at our fetal echo. Before the technician even pointed out the baby's heart, I saw 4 chambers!! The baby's septum is perfect, and the aorta looks good. Even though this was just a regular ultrasound in the doctor's office, we spent a good 10 minutes looking at the heart and the blood flow---I think when we finished looking at this little one's heart I finally breathed for the first time in four months.

Jason and I are excited to announce that we will be welcoming a healthy baby boy to our family this September. I'm sure he will bless our lives in ways we can't even imagine now.

Saturday, April 24, 2010


As if our trip to California wasn't enough, Jason, the girls and I all headed down to Vegas last Sunday. It was a short trip, we got there Sunday afternoon and came home Wednesday morning, but it was so much fun and believe it or not so relaxing. We did a whole bunch of nothing! We went swimming in the heated pools, played on the play yard, and just hung out in our timeshare and we couldn't have been happier.
We did, however, get to spend some time with my older sister and her family. My sister Cammie, who I adore, decided against a big wedding and reception at home in NY and instead, brought her family out to Vegas for a vacation and to get married there. We were so happy, because the last time we saw Cammie was when she came for Gracie's 2nd surgery (before this past week she has only seen Gracie in the hospital, hooked up to a vent and getting pumped with lots of meds).

Nothing to exciting to report from Vegas, but I do have a couple of cute pictures to share. Enjoy!! A Gracie update should follow in a couple of days.

These videos are of Gracie splashing around and Morgan thought it would be fun to run in circles--Gracie got a kick out of it.

Tuesday, April 13, 2010

California Vacation---its a long one

Jason and I feel like we have just been on a once in a life-time trip. We are so grateful and appreciative to his parents who not only accompanied us on this trip, but made the whole trip possible. Though I'm sure there were many times they asked themselves why they signed up to go with us, we loved there company and the time we spent together, despite the craziness of the trip.

Leaving home at 5am
Outside the parks our 1st day.
Inside of the Bug's Life auditorium.

Morgan LOVED the entire trip and has since told me that she wants to move to California. She absolutely loved being with grandma and grandpa 24/7 and loved having her Aunt Michelle and cousin Cade to play with. At Disneyland it took Morgan quite some time to catch on to how fun it could be. She wouldn't go near any characters without freaking out and she was hesitant at first to go on any rides...But she soon fell in love with the Dumbo ride and the Tea Cups, as we were leaving she proclaimed loudly and firmly, that she wasn't ready to leave the park.

Morgan's favorite part of Sea World was of course Shamu. It was so fun watching her clap her hand and shout, "Go Shamu, go Shamu!" Though dad thought that the Sesame Street show was lame, Morgan said she loved it...I'll have to form my opinion the next time we go.

Taking a break.

Now for Gracie...let me begin by saying she is a child that HAS to have consistency and familiarity, without it she falls apart. During the trip she was crankier than normal perhaps because we were constantly on the go and she only had a little time to just chill at the hotel or Michelle's house. Monday we went to California Adventures and apart from riding a couple of the rides in The Bug's Life area...she wasn't too impressed and actually fell asleep in the stroller (something she never does). Since Monday was supposed to be our easy/quiet day we planned to leave as soon as Gracie woke up, but during her nap we took the other kids to see Playhouse live...well we knew we had to take Gracie to it before we left...it was Mickey Mouse and the gang. We're so glad that we did take her back, she LOVED it. Gracie would dance and bounce up and down as she watched and at the end, she just kept glancing back at the stage and then at us as if to say..."what? that's it?"

Tuesday was our big day at Disneyland and it was a crazy day. We found out later that there were about 65,000 people at the park that day. We were grateful that we had a disability access pass for Gracie...we were able to do more than we would have been able to do without it and it helped her not lose to much stamina and endurance waiting in hour long lines.
First thing on the agenda at Disneyland that day was to head to Mickey's house...though Gracie met him at California Adventures the day before...she was extremely tired and it didn't go over so well. But at Mickey's house she actually did great until Mickey tried to kiss her hand....I think if Mickey talked he would have been less intimidating. Overall we think Gracie enjoyed Disneyland and all of the rides and attractions...she loved Its a Small World, she just jabbered and waved to every doll there. During the Pirates of the Caribbean ride she kept signing all done, she wasn't a big fan of the darker rides, she even freaked out on the Winnie the Pooh ride.

Our days in San Diego were limited...I accidentally forgot the charger for Gracie's feeding pump. We tried a gavage feeding, but Gracie didn't tolerate it. After calling almost every home health agency in San Diego and the surrounding areas to see if they could help, we decided that we would need to drive back up to Rancho Cucamunga that night...So Gracie and I stayed at the hotel while the others went back to Sea World for a few more hours---I got to push 10ccs of formula into her g-tube, every 15 minutes to prevent another melt down and vomiting experience. We did get to go to Sea World in the morning and catch the Shamu show, Grace was vaguely interested, but other than that she didn't seem to like being there. I think it was too hot. We tried her on some of the rides there, but after a bad experience on the flying Elmo's, I gave up. (Let's just say that Sea World isn't very disabled friendly...the workers weren't going to let Gracie ride the ride because she couldn't walk...)
That sums up our trip in a nut shell, next time I think we will just want to spend time at Disneyland (maybe 4 days) and not be going all the time. Plus it will help that Gracie will be older than. It was a shock to her, I think Gracie had a headache from being at a lower elevation and still on as much oxygen as she is on here (her docs didn't want to tritrate based on sats, since we are trying to control the pressures), her g-tube got pulled out twice, and she isn't use to as much sun as she was exposed to during this trip (though she has a nice little tan on her legs now).