Relieved

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.

Vegas

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.

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).

I want one!!!

Last week I got a call from our Physical Therapist asking me if I wanted to bring Gracie down to the center to try out a new walker that was being demoed. This walker is relatively new on the market and very much unlike any other walker on the market. Gracie's therapist--Becca said that she was really anxious to see kids in it, because it is a good idea, but sometimes with these devices they look good on paper, but you get the kid in it and it doesn't work.

Anyways...the walker is called the KidWalk, you could learn more about it here http://www.primeengineering.com/pages/products/kidWalk.html and it was AMAZING to see Gracie in it. At first she hated it, but once we took off the upper chest harness, and moved her to the linoleum, she did great. Gracie moved back wards with purpose and ease and even tried to move forward. When I pushed the walker she eventually learned what her feet must do and tried to walk instead of just raising her feet.

We will be trying this walker out some more in the next few weeks, but I'm sold! It's a hands free walker and allows kids to move on all terrains and explore their surroundings just like non-disabled kids. We are now in the process of getting a prescription and writing the letters to insurance to try to get approved for one of these walkers. Our PT thinks we have a chance for two major reasons, it's likely that Gracie won't need any other major equipment like wheelchairs or the like and she is 21 months and her only mobility is rolling around on the floor. Wish us luck that we will get one of these amazing walkers soon. If there is anyone out there that has gone through the process and has some pointers, I would love to hear your input.

Living Through their eyes

Lately I have been lost in thoughts...thoughts about the past, the present, and the future. Thoughts of where my life has been, where I'm at today, and where my life will be years down the road. Many of my thoughts centered around Gracie and the choices and decisions Jason and I have made in her life. We asked Grace to go through so much just to stay here on earth, and at times I have wondered if we pushed her too much. But seeing the joy and excitement for life in her eyes assures me that the fight we saw in her so many times as she laid helpless and what seemed to be at the end of her rope was real. Gracie fought through more than what any child should go through to experience life's simple and pure pleasures. Though I have seen that zest for life many times in her life, I have been able to feel it more within the last few days.

Grandma and the girls at Disney on Ice

Through Hope Kids we were able to take Gracie and Morgan to Disney On Ice: World of Fantasy, to my surprise Mickey and Minnie were there which made Gracie's day. I know I have said this before, but Gracie absolutely is in love with Mickey and to see the joy and excitement in her eyes as she watched him helped me remember what life is really about.

Gracie's 1st time on the merry go 'round

Morgan always is afraid at first but then remembers she loves it.

Then today we took advantage of the beautiful Spring like weather and took the girls to the zoo. It was wonderful to walk around and see the interest in Gracie's eyes as she watched the animals roam around in their little habitats. We decided to take her on the carousel for the first time and she loved it. Oh, how I love to watch this little one enjoy her time here on Earth!! If only I could start to emulate that more in my life.

Morgan trying her best to keep Gracie from falling off.

if you listen carefully, you can hear Gracie answer yeah.

Videos

Michelle these are for you and Cade, since you have been asking for them. Nothing to special, but I still think they are cute. Morgan wanted to share her scripture from Sharing time---she knows it but needs help when she is asked to 'perform'.

Gracie and her trial off oxygen.

the girls with our friends--the Tavernaris from Brazil

Life has been so crazy for us, hence the lack of posts. We are all doing well and looking forward to some warmer weather and some very fun family trips in April. The first week of April we will be traveling to Southern California, we are going to both Disneyland (thanks to the Give a day of service, get a day at Disney) then we'll be heading down to Sea World in San Diego. We are so excited to finally travel as a family and make some great memories with our girls.

Morgan is great. She is at the inquisitive stage, everyday we get asked thousands of questions. Why do we have bones? Why does Jesus live in Heaven? Why do we have a belly button? Why are you doing that? etc. But the majority of her questions lately have focused around Heaven and who gets to go there, when do we get to be there, etc. Perhaps the most tender moment for me was when Morgan looked at me and said, but mom I don't want to die and go to Heaven. Silently praying, I told her she didn't have to worry about that, she still had a long time here on Earth. Then she said, I don't want Gracie to go to Heaven soon either....heart wrenching....what do you say to that?

Though there are times where all we want to do is tape Morgan's mouth shut, oh how we love her voice, her sweet loving nature and the amount of love and adoration she has for life.

Gracie is doing wonderfully well. She is jabbering all the time and is communicating in her own ways. She screams when she wants something and when she has done something that she is proud of or wanted to do she shakes her head yes in satisfaction. Gracie is now blowing kisses and waving and saying bye bye.

Gracie has decided that she doesn't need oxygen anymore and frankly we are at our wits end on trying to keep it on her face. We have tried everything apart from super gluing it to her face. After she pulled the oxygen off completely on Sunday, I hooked her up to the pulse oximeter to see how she would do on room air. I seriously was considering just keeping her off of it during the day, but I can't make that decision without guidance from her cardiologist. Especially since her sats are borderline acceptable, but who knows maybe her doctors will think differently, we have an appointment at the end of March.

I have videos I want to post, they just won't upload tonight. I'll try again tomorrow.