Chicks with brains

We love these chicks with brains from Loma Linda.....

The transplant team assistant, Tricia and Maria, the transplant phlebotomist/ vampire

From Sept 2010

Cheri, the Transplant coordinator, who left the deepest footprints on our hearts. She was with us from the very first intake appointment at Loma Linda in August 2009 when we knew noone and nothing about transplant. She was always on the other end of the phone when I needed a friend or help. She was a comforting smile to visit us on the 5th floor and a loving friend through our whole process. We miss Cheri dearly!

From Sept 2010

Dr Shankel, the post-transplant clinic doctor who could pick out which one was Gabriella's donor heart blindfolded in a line of 20 kids. She found her CMV before she even got sick with it, she taught me SO much about post-transplant kids and was always a peace of mind to us.

From Sept 2010

From what I hear, it is still hanging in clinic. :)

From Sept 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!

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

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!

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. :)

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!!!

Everyone who was part of the tour came out and played together at the end.... 'Better Together'

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!

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?

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!

Miracles

I loved the quote that Miracle Mason's mommy posted today SO MUCH that I had to share it.... it's kinda a theme for the lives both Mason & Gabriella have been given!

"There are two ways to live your life-one is though nothing is a miracle, the other is though everything is a miracle." ~Albert Enstein

Gabriella, on the news

Chandler girl beats odds, comes home after stroke and heart transplant

Check out Gabriella, featured on our local ABC channel last night! My fighter! My survivor! And the power of ORGAN DONATION!

Gabriella's stroke, one year later

Preparing for this blog... I read back into my own blog entries from the days of Gabriella's stroke. I am sitting her crying tears of grief as I re-watch what she went through the morning of September 25, 2009. I'm not sure what I want to even say about that day.

Gabriella's Stroke blog entries: STROKE

I posted a prayer that night that kills me to read again. This poor mother, her poor child, what if they lost her? She was already going through so much with her pending heart transplant. My heart breaks for them. Oh, wait, that was us....

September 25, 2009- God, heal my baby. Shatter the clot with your insurmountable power. Give the deprived areas of her brain the miracle of life and function that only you can provide. Let her sweet voice be heard by everyone she encounters, and her hand hold mine on its own. Let her change the way people think about life, or their children. We have full faith in You and Your love for her. Amen.

I am not reading back because I don't remember. Over the last year I retained what I needed to, the details and stats, and I pushed forward with finding her help to retrieve the skills she lost. I think the reason that I get so horribly emotional reading back to those days is because I detached myself from the pure agony I felt as a mother watching what she went through, because it was haunting me so terribly. She almost coded. We almost lost her. Post traumatic stress disorder at its maximum. My way of coping with the PTSD was to keep facing the steps in front of me so I would not have to keep facing the emotional agony of what happened, no matter how hard it was to accept what happened to her. It doesn't surprise me that I dealt that way.... I lost my dad at 13 and my re-dad at 21... and both times I did the same. I was haunted by the stress and emotion of it, so I focused forward and how to help my mom get through everything. I didn't take time to sit in the moment... it hurt too much. Of course, I am not saying this was the best route to manage... but it did keep Gabriella focused on recovery as well. Regardless, the pain was deep.....

September 26, 2009- I cannot even begin to express how badly I want to hear her voice again.

Gabriella has spent 365 working hard. I wondered when she was still in the hospital weeks after her stroke where she would be in one year. I honestly had no expectations, no preconceived idea, nothing. I remember her eyes with a trapped look, her 'lazy arm' she couldn't move, her grunts and screams when she wasn't understood. This experience started a new form of understanding between Gabriella and I. Our relationship changed. Before her stroke she was very strong and independent and didn't even trust me to remove a band aid, much of it came after I had PJ and she had to share me. I even got a mothers day card from Paul that May and it said something about hoping Gabriella and I become closer. I loved her with all my heart, she was my baby and made me a mother. Our relationship just had a dynamic of independence. After stroke, I was there to read her next 5 thoughts to help lessen her stress... which was not easy for her to be dependent. I was thrown into the position of being her constant nurse, installing ports and giving injections in them into her belly, explaining procedures and being by her side for every one of them, keeping her doctors all on the same page after a crash course in medical training.... and she trusted me 100%. Gabriella and I have spent the last year planting roots of a relationship that will be unlike any other as we both grow older... and I feel blessed by that.

Never would have I thought it was possible for someone to get back as much as she has in just one year. From not being able to swallow or move her tongue and having only conversations through me as her translator, to having a (while not YET grammatically correct) conversation with anyone she wished to speak to in just ONE year.... THAT'S miraculous. She didn't have the luxury of being able to write or read to communicate... yet God built bridges for her to be heard.

February 8, 2010- Thank you to everyone, who from September 25th until today had their prayers on Gabriella. Those deep and heartfelt cries to God to take the clot and destroy it worked! And to know that those prayers will now be on her new heart and the surgery it entails makes me so excited to see God work again in that area!

Gabriella has overcome the odds in this past year. Her Neurologist told me a couple months out that she was at the max potential for her arm function at about 30-40% use.... and now today, with about 75% use, she proves him wrong. We were told she had a strong probability of cognitive problems, yet she tested a whole year ahead of herself this past January. We were told she would most likely have an issue retrieving words, and she did suffer from that as her words came in larger amounts, but her new sparkly heart has allowed her brain to function at a higher level and retrieving the words she wants to say is so minor it is hardly noticeable.

May 23, 2010- For the first time in over a year, I feel like my daughter is full of life, and not dying. Like we have a future beyond fear. We have rounded the top of the steepest point of the mountain and are looking at the beauty of what is in front of us. Like Miley Cyrus says about her song The Climb, which has been our theme song through this journey...... "Life's a climb, but the view is great."

Not only did she overcome this life changing stroke.... look what she has achieved through her heart journey. Gabriella's story is something amazing, and though I always get flustered when people mention it, the more I think about everything she has been through and the more I read my old entries, maybe a book isn't that bad of an idea.

So now on this 1 year mark of her life changing stroke, and on the day we return home from her heart transplant, God has answered the cries of our hearts. He loves, protects and heals... both here and in heaven. His reasonings for allowing things like strokes and transplants or even taking little ones to heaven are unknown, but we continue to praise God in this storm!

Thankful Thursday

Life has taught me a lot in the last 4 months being displaced and distant from home....

I have learned to live with intent because to live is a gift. No one has the right to live. While some live to have a full life, others are taken too soon. Taking this short opportunity on earth to live with purpose is the best gift I can give my Savior. Making that first observation that we have no right to be here, but are blessed that we have been given the opportunity, is the first step to finding true happiness.

I have learned to be transparent in who I am. Those who love what they see have stuck around and those that cannot accept who I am have judged me. To both, I have peace with. To be true and honest to myself has been the most freeing experience.

I have learned to protect and enrich my family with confident, quiet grace. It takes only love and respect to make a family, or any relationship, thrive. Being a wind that causes a fire to grow higher only causes fire to spread and be destructive... something I no longer want to be involved in.

I have learned that there is a whole new way to appreciate your children, and it can only be discovered if you are forced to have to fight for them to survive. While I don't hope this on anyone or expect anyone to understand, I am thankful I personally was able to pull it from our experience.

I have learned to only put trust in a person if you are prepared for the disappointment that they may let you down. We are all human. We are all flawed. Just as I have been let down, I have let others down. Learning from it or being offended by it is the choice we make on our own, but which one is the one God would want us to choose?

I have learned that there is so much good in this world that we fail to see because we are forced by society to notice the negative. From random strangers to organizations, we have been blessed by good-doers, and will strive to always pay it forward.

How could I have not turned these last 4 months into a positive experience? The trial now will be to take home the reformed version of me and pray that she can keep the same focus. It shouldn't be too hard. I watched my daughter go from healthy baby and child to dying in a matter of a year.... but she came out FULL of life.... and I have this smiling face as my reminder:

How I feel about germs...

We will be home this Saturday, the 25th of September!

If you would like to come visit Gabriella, we would love to have you. After all, our family and friends have been one of the biggest reasons we have made it this far in one piece! We just want to verbalize on here a few things that we hate having to ask of people and have noticed we aren't very good at it.

*we are enforcing a strict no shoes policy in the house. Yes, feet are gross... but the grime one can bring in on shoes is even worse.

*we will have strategically placed sanitizer throughout our little apartment, and have 3 sinks. The EASIEST way to prevent the spread of germs is simply by hand washing.

*if you have been sick or around anyone that has in the last SEVEN DAYS we ask that you please wait to visit until you are at least 7 days past exposure. You can carry a virus with no symptoms because your body can fight, but Gabriella's can't. This includes fever, rash, sneezing or coughing, infections, etc.

*we ask the same for even allergies. Sneezing or coughing, even if it is allergies, can still spread dormant germs that you are carrying but not sick with.

*please don't share a drink or food with the kiddos. Not because we are anti-sharing, but because it is a breeding ground for bacteria.

I know we will be visiting other's houses and we cannot be in control of everything. We will come with masks and sanitizer of our own, but please understand if we leave early or keep our distance. The reason for us being so strict within our own house and within the 4 of us is because it is the one place we can strive to keep as her safe haven, especially in the upcoming flu season.

And we are only being overly cautious as winter approaches so we can stay out of the hospital and with our families for the holidays, and protect her precious sparkly heart. Gabriella's risk for pneumonia skyrockets throughout the winter and just a simple cold can turn critical. The winter before her heart and before she was immunosuppressed, she was in the hospital twice for a cold gone bad. We expect that we will have a couple rounds of that this winter but will still do everything possible to prevent her from spending any time in the hospital!!

There has been some question and judgement as to our practices of taking Gabriella out and about. Not that I need to justify or defend what the doctors and I talk about as far as Gabriella's exposure, but because some people do need educated before they pass judgement, I will explain...... Why have we gone to Disneyland or the Aquarium, but express concern over hanging out with someone who is sick? Here is an analogy I compare Gabriella's health to.... driving. You get in the car and use all precautions.... seatbelt, mirrors, sun visor, carseat, airbags. Those are like our Lysol wipes, mask, sanitizer, Germ-X hand wipes and disinfectant spray. You never know what you may run into when you are out there, but you want to be prepared and HAVE to get around! But if someone in front of you slams on their brakes, you react and protect yourself by stopping safely enough back. This is like us not encountering sick people. While it is impossible to keep Gabriella away from every germ out there, we will be cautious when we do go out. If we kept her away from everyone and everything, then what was the purpose of choosing heart transplant for her?? Her new sparkly heart is so she can live a full and quality life, right? But we will not walk consciously and irresponsibly into a situation that is guaranteed to be dangerous for Gabriella, like hanging out with someone dog sick with the flu or cold, regardless of who gets their feelings hurt. Losing Gabriella is not worth making everyone else happy at a gathering.

And on that note, we will call this my one 'I'm a little butthurt' post for the month. :)

Thank you to everyone for your understanding!!!! We love you all and DO also acknowledge the support that we are given!!!

Support

I just merged the separate blog we had created for Support & Fundraising with this blog. Any past events or fundraising information is now accessible on the left toolbar under 'support' and 'support - past events'. Streamlined. Simple. Thats what I need in my life.

Thanks for indulging this bored momma on a Friday night. :)