Saturday, October 30, 2010

100 to 0

Our last few weeks in SoCal were emotionally draining on me. It was complicated. On one hand, you had to drag me, kicking and screaming from California. I LOVED living there, loved the hospital and our transplant team, loved and felt comfort being around all the heart families and friends I made, loved the church and friends we were blessed to be part of, adored being in such an amazing state with SO much to offer my young and (now) active family. On the other hand, I was eager to get home to my place and my stuff, so see my nieces and nephews (and other family of course, lol), to go to some of my favorite spots they didn't have in SoCal, to reconnect with our medical and therapy teams here. It was inevitable, we had to go home, but it was still hard in a way I couldn't explain. Most people who are away from home can't wait to get back right? But it was easy to love where we were.

We spent the last few weeks soaking in everything. We did all of our favorite things, went to our favorite spots and was able to hang out with everyone and spend some time making memories. Anyone that knows US would expect us to squeez Disneyland in.... a few times.... before we went. Gabriella's annual pass expired 9/23 so after our trip on PJ's birthday, we went 2 more times, just to really get our fix in before we left. I can't figure out if that made it better or worse, because being so close we were able to go whenever we wanted and we became used to the accessibility of it. But it also left us with a strong craving that Paul and I cannot tame now over a month being home. Everywhere we go we find a way to unknowingly Disneyfi it... yes, that is what you call an addict!

Halloweentime is my FAVORITE time at Disneyland. After over a decade of trying to pick Christmas or Halloween, I decided a few years back that Halloween was it. So we were lucky enough to enjoy some of that on our last couple days in the park!



Once we were home, it seemed like a balloon deflated. We went from 100mph to 0 in no time flat! I am sure some of it is due to my lingering temper tantrum and super insane appointment schedule, but I just keep thinking there is nothing to do in Arizona compared to California! Thank GOODNESS for some awesome friends and family who I have been hanging out with that help me remember I am so blessed to be near them!

Friday, October 29, 2010

Our friends at Restoration Church....

I know of people who search and search to find a home church. We are lucky enough to have multiple places of worship that we consider family. The bottom line is finding your own personal relationship with God, and we seem to find our relationship with God in the hearts of people and through the relationships we build with our brothers and sisters at all different churches in different places.

While in California, we had a friend here in Arizona (the worship pastor at Cornerstone Chandler) call his brother in Redlands, CA and warn him we were there and in need of a church family while in SoCal. Soon after Gabriella was released from the hospital, the pastor of Restoration Covenant Church, his wife, the worship leader and some awesome friends came over welcomed us into their lives. Over the following months as temporary residents, we built lifelong friendships with people from this church, and even got to speak one Sunday. And when I say church, I say it in a context that is completely opposite of what you have known your whole life. This was having your super awesome close friend lead you in the word. This was having a small band of 4 blow the roof off of an atrium style glass room' almost literally. This was people reaching out and not only helping each other but striving to wrap their arms around their community because their hearts are so driven to be like Jesus. This was a group who spent all morning at church together, only to spend all afternoon in the park together just hanging out.... the Sabbath. This was sharing common interests, kids growing up together like cousins, taco night, and pure genuine love.

We love our family at Restoration, and cannot wait to visit back on our return to Loma Linda soon. And if you are EVER in the Inland Empire and want to hang with an AWESOME group of people, check out http://www.restoration-church.com/

Anyways, my point. Here are some pictures I wanted to share from Restoration!


From Collages

Thursday, October 28, 2010

Weekend with Mom

(updating old pictures pictures I haven't had time to post!!!)

Labor Day weekend, my mom came out to visit for the weekend. We had the funeral services for my Grandpa Joe and Great Grandma Connie the Friday before Labor Day, which were beautiful and at an absolutely gorgeous location in Cordova Hills, CA. The rest of the weekend, we spent time together soaking in SoCal! We took my mom to the Aquarium of the Pacific and Santa Monica Pier Saturday. It was a blast, but the aquarium was WAY too busy! Regardless, we had a great time! I took my mom by High Voltage Tattoo, Kat Von D's shop, and she was like a kid seeing Disneyland for the first time!

Here are some pictures from that weekend with my mom!


Wednesday, October 27, 2010

Pronouns and Cooties

The last few weeks have been uneventful in terms of cardiology. This is a GOOD thing people! We are all 4 flu-shotted up, which we have learned that beyond all of the differing opinions among parents, it is a social responsibility that would potentially save our daughter from unnecessary illness. We will take any measure needed to lessen her chances of being hospitalized, and the flu shot is just one little step we can take! Gabriella's med levels are all perfect which seemed pretty easy after switching from her every 8 hour meds to every 12!

PJ's ECHO came back as having the prominent aorta that was previously mentioned. Dr. Alhadheri doesn't seem to be very concerned, said it was not related to any other heart conditions. They will continue to watch it and he should "grow into it". WHEW! We did however discover PJ has a severe fish allergy! We were referred to a allergist because of his food reactions he occasionally had. The test showed he is growing out of his nut allergy but he tested very strong for FISH! Not shellfish, just regular fish. She we went for bloodwork to see if we can narrow in on his allergies and better prepare for any others he might have.

Here he was immediately after they did the pokers:
From October 2010

Speech has been going great. Gabriella's learning ability has dramatically improved because of her good, healthy bloodflow to her brain. She is retaining information and acknowledging when she does not say something right. She is showing much less Apraxia style issues... thank goodness! We are having one heckuva time learning numbers but this is just residual effects from the stroke. We are focusing hard on pronouns and proper sentence structure, both areas she needs to work on strongly. But in all honestly, having more specialized areas to work on in speech is SO much better than training her how to make a sound or simple word. I'll take it. I am SO proud of her!

PJ decided to somehow pick up a cootie bug last week. As 'homebound' as we are, we still go to doctors and family functions. Doctors we cannot avoid and family functions we try to not avoid, just proceed with caution. Thankfully Gabriella is very responsible with her cleanliness and keeping germs away. PJ, well, he's 3. There were a couple times last week he did something that made me cringe, like play at the pediatrician or touch anything in sight! When he started showing signs of being sick, Paul and him took refuge in the bedroom while Gabriella and I stayed far away. It was killer for me as a mom to not be right with PJ, but if I was exposed, Gabriella was exposed. SOMEONE had to make her meals, give her meds and get her to docs, and I couldn't do all of that if I was exposing myself to PJ's cootie. He ran high fevers, had belly issues and just felt crummy but he planned it right. He was sick from Saturday morning to Sunday night, just enough time for Paul to be home all weekend! By Monday morning he was a new kid, and I was a bottle less of Lysol in the house. One successful illness DOWN!

So that is whats been going on with us. Hey, next time you notice me not blogging.... send me an email or message and 'smack' me. :)

Tuesday, October 12, 2010

Extra goodies...

So this is unrelated to Gabriella or her heart, but I thought it was somewhat relevant to us as a family! I am trying everything I can to make side money in light of our financial struggles due to the past couple years with Gabriella. I've been selling things on my fabric destash website on Etsy, sewing so I can start selling again on MaggieMoo Designs, using eBates or Shop at Home to get cash back on online orders, using Restaurant.com and Groupon for things and doing side stuff for friends or family, etc.

I got started on Swagbucks by a friend of mine who made $150 in Amazon gift cards. You use them as your internet search engine to search or just visit your daily sites (it randomly awards you bucks for your search), take surveys and polls, take advantage of free special offers and earn points! You can set the SwagBucks search page as your home screen and even add the plug in so on your address bar it automatically uses SwagBucks to search. I have been using it 8 days and already have a $5 Amazon gift card! If I kept at that pace, thats $225 in Amazon cards I can earn in just ONE YEAR!

So obviously, I get referral credit... and if you wanna try it out, please sign up under me! My referral link is: http://www.swagbucks.com/refer/vegaangel82 I appreciate you taking the time to deal with my unnecessary blog entry!

(The links to programs above are my referral links as well if you want to sign up!)

Bucket List

I have a bucket list. Life is so short... why not have some dreams?

I have 4 major things on my bucket list. One being that I wanted to be evacuated from one of my favorite rides at Disneyland. This happened in September and I was probably the happiest camper walking off the Haunted Mansion! Another is to get a hand drawn tattoo by Corey Miller. I have emailed him, multiple times, with no reply. One day, though! Another big one is to ride in a hot air balloon, preferably over somewhere gorgeous like Napa or Temecula. I want to end it with the breakfast and champagne.... ahhhh!

I also had on my bucket list to see Jack Johnson live in concert. I fell in love with his music back in 2003/4 when I first heard him and over the last 7 years I have listened to his CDs more than any other artist. I use his music when I am sad to cheer me up, when I am upset to calm my emotions, when I am angry to calm my nerves, when I am on a road trip or cruising on the PCH, pretty much anytime. His music feeds my soul, but he only ever played live in Hawaii! I got word he was coming to Arizona back in April and Paul told me to splurge and buy tickets to his show in October... 6 months in advance!! This was a big commitment for me, because before transplant we didn't commit to anything. So, I did the whole Ticketmaster stalking thing and got the PIT section, right up front. Of course, anyone who has read my blog for any period of time knows what all has happened between then and now! We got home late September which quickly turned into October when we realized the concert was coming up! We cashed in my mom's offer to come watch the kids so we could get out for the first time since January 30.... yes, that long.

Sunday night we got ready and headed out to Glendale... we shared some nachos and headed to the Pavilion for the concert! I had a moment of pure bliss when he walked out on stage and started singing. He was so humble and cool.... just wanted to jam with 20k of his 'friends'. We sang and danced and enjoyed him performing for almost 2 hours with no break! It was a night to always remember for me!!!

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Everyone who was part of the tour came out and played together at the end.... 'Better Together'
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I never wanted it to end... it was amazing. The best concert I've ever seen and well worth every penny we put into it last spring! Thanks, Paul, for taking me on such an amazing night!

Thursday, October 7, 2010

The never ending appointment

That's what the last 12 days has felt like. One constant appointment. I learned today that it is possible for me to spend more in copays than Paul can make in one single day.

We haven't really had appointments everyday, but the days we don't have them, I am on phone calls to set up more appointments, arrange Gabriella's meds, set up services for her speech, deal with our medical insurance, etc. Let's just be safe and say Gabriella is on an unplanned fall break from homeschool with only intermittent lessons when time allows.

Last Thursday was our initial clinic appointment with our new transplant team here in Phoenix. Sure, I was nervous to go to a new team and it was no secret, but my fears were translated from nervous social networking updates to rumors of inadequacy to our team by some Gabriella lovin' followers. I think once our coordinator and I communicated directly, everything was 'all good'. I am sure if anyone gave it sincere thought, we traveled 350 miles from home to have this very well known and seasoned team take my daughter, crack her ribcage open, REMOVE HER HEART and put a new one in.... with full faith everything would be executed seamlessly. Not only did they succeed in this miraculous feat, they provided her with absolute stellar healthcare in the months to follow. Any mother would be nervous to leave such a team doctors, coordinators, nurses, assistants, MA's, etc.... the team that saved her child's life. It's one of those "why fix what ain't broke" things, but we had to come home. Not to mention the emotional factor of missing our friends on the team in California. Our family grew by employees of Loma Linda University, and leaving them as friends was no easy task either. It was never that I doubted our local team's skills, but the whole idea of change was hard to face. The safety and security I had being right behind the hospital with a doctor there that could pick Gabriella's sparkly heart out with a blindfold and stethoscope in a sea of 100 children... it was comfort. So we came home, met our new cardiologist who is a wonderful man, caught up with our coordinator and her assistant, and met the 2 MA's on the transplant team. We went over everything from a game plan into the rest of her first year post transplant, how to reach people in non-emergent and emergent matters, how to handle an ER visit and a million other little questions. I was put at ease. I guess I could say the ONLY way I would have felt any less nervous about the change would have been if I had been familiar with all of those details beforehand, but that's impossible. I think it was natural to be nervous, anxious and curious about the comparison of care we would see in the transition.

Moving on... Gabriella's heart function looked wonderful last week and again this week. There was an issue of PVC's (palpitations or extra heart beats) on her first EKG but after a 24 hour monitor and another EKG today, it seems to have resolved itself. Her Magnesium levels were a bit low, but back into normal range as of last Friday. All very minimal hiccups, hiccups we are fully prepared to experience for the rest of her life, so we are not alarmed by them. Everything seems great with her with the exception of this awkward cough... so we will have an X-ray next week to look for a culprit!

Gabriella had her first speech therapy today after not seeing Mrs Lisa for 5 months! I would venture out to say Mrs Lisa was VERY impressed with Gabriella's progress! She was super excited and said she could actually have a conversation with Gabriella and understand everything.... MUCH different than 5 months ago! She is going to work on a new game plan for future therapies and work on more specific places that Gabriella seems to struggle. She uses simplified words for things in place of a more appropriate word (retrieving a word she is comfortable with is easier for her so she skips attempting to retrieve a new word that may be more appropriate). She also is not using her pronouns or tenses, again referring to words she is familiar with. For example, instead hers, her or she, she uses 'the girl'. We just need to plant more new words (which is much easier now) and retrain her to use them! Mrs Lisa is a miracle worker, so I am excited to see what she does with this new and improved new version of Gabriella. We got in weekly on Mrs Lisa's calendar! If there is ANYTHING I am most thankful for from her sparkly new heart besides allowing her to be alive with me, it is the power it has given her brain to heal.

As far as Gabriella's meds go, we were able to hook up with our home delivery pharmacy through our insurance which gives us a 3 months supply for 2 months of copays. I also got a co-pay assistance card from one of the drug manufacturers which paid for 80% of my co-pay on one med. Our savings averages out to be 53% off monthly! THANK GOODNESS! I had a friend ask if we had hit our out of pocket maximum yet... the beauty (sarcasm) of my insurance is we have no out of pocket max for medicine and appointment copays. Maybe I wouldn't be so upset if our copay amounts weren't so dang high... but I can't complain. Where else would I take my little preexisting condition?

On to PJ.... yes, PJ is getting a spot on the blog finally! I took PJ to see the cardiologist on Monday for an annual screening. This poor kid is so traumatized from everything he has seen his sister go through, that he won't even put a band-aid on a cut. Well, when they did the EKG on him and put the stickers on, this boy FREAKED out. Enough so that his blood pressure was 148/104. For a THREE year old!!!!! The good news is his EKG looked good. But I am waiting on the results from his echo that was done today, and word on a 'prominent aorta'. On that note, I am going to just move on and not even talk about that until I get information on what it is from the doctor, for my own sanity. I'm sure you can understand my need to pretend he is completely heart healthy, right?

PJ saw our pediatrician on Monday also, for his 3 year well child visit. I don't go into these appointments expecting "well child" anything anymore.... ever since Gabriella's 4 year check up proved to lead to her being a SO NOT well child. PJ's stats are great, he is a little beast for his age. Dr Jones said he wasn't even going to attempt evaluating his speech level since PJ was having complete conversations with him the minute he walked in the door.... lol. He is a smarty pants for sure. Dr Jones wrote me a script for 2 epi pens since PJ decided to be randomly allergic to foods, along with a referral to see an allergist ($cha-ching$) and determine what foods he is reactive to so we can better prepare. His surprise food reactions lately lead us to wonder how many more we will discover?? He also wrote a referral to a surgeon ($cha-ching$). We actually had one early last year, but Gabriella's heart took over my attention. PJ was born with this lump on his right leg. I discovered it while putting lotion on him at a week old. We had an ultrasound done on it last year and discovered it's location was innocent, but we would love to have it removed before it affects nerves or grows into muscle or deeper in the tissue. Can't have anything wrecking this boys NFL career!

That makes 5 appointments this week for us. We have labs and an Xray to have done, but I am thinking those will wait until next week. We have Monday or Tuesday before the HAVE to be done for our Thursday appointment, so tomorrow I will take a day and educate Gabriella, fold 4 baskets of laundry and maybe even start sewing so I can restock my etsy shop! Next week is lighter, with the labs, Xray, clinic, and an appointment that I have to go to that I request some prayers for guidance on. Hopefully, the Jack Johnson concert on Sunday that we bought tickets for back in APRIL for my birthday will calm me and take me to a tropical place! So excited, and we almost forgot about it so it was like a little surprise! This will be our first night out just Paul and I in WELL over 6 months! Deserved, much?

Sunday, October 3, 2010

Teeth!

I love normal kid stuff!!!

Gabriella hit a 5yo milestone yesterday and lost her first tooth! Along with what some say, she lost the first tooth she got!

She was super excited to put it under her pillow, and gained 8 quarters this morning for it!

What does she wanna do with her money? Go buy Frozen Yogurt. Silly girl!

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