Wednesday, June 30, 2010

Wanna see her moves?

Gabriella's video of her tricking mommy in the hospital post-transplant was a hit. I received some of the BEST stories as a result of the super amazing LIFE her little face possessed.

Well, I shot some pretty adorable videos of her last week, on our adventure down to Downtown Disney one evening. Her robot video is a hoot, but there nothing like her riverdance/ booty shakin' moves in the 2nd one!

ENJOY!!!!





CHECK OUT THAT ENERGY! LOL!

Tuesday, June 29, 2010

Eclipse....

November 2008 I was here: Twilight midnight premiere

November 2009 I was here: New Moon midnight premiere

June 2010, Eclipse midnight premiere, and I am sitting in my pajamas in a home thats not mine and in a town where I know no Twilighters, foregoing one of my guilty pleasures. (and about 10lbs heavier than those pictures too.... blah)

Give me a moment while I pout... TEAM EMMETT!

The eventful month of June

June has been exciting... a new heart gives new energy! But our caution with her immune system being almost nonexistent restricts how much we can use all her new energy. The good news is we will slowly start to build a little of it back at 3 months post-transplant, but it will never be a full defense system again so right now we are using her sensitive state to practice good habits for the future!

I always post about our multiple doctors visits per week, but here is some insight on our OTHER days!


We spend most evenings outside. This SoCal weather right now is amazing! Daytimes are around 90 and evenings in the 60's as summer begins to show. .....(Yeah, yeah, please spare me the whole lesson about how it gets hot and humid here. I know, but I'm an Illinois girl and I KNOW my humidity! In Arizona right now it is about 110-112. Yeah, dry heat, but I have lived in AZ for 11 years and it really doesn't make it much easier than the humid heat we had in the MidWest. Something about your milky white skin sizzling when you walk to the car beats out thick and wet anyday)..... The relief in the evenings is something we NEVER get in Arizona from pretty much May thru October. SO we are taking advantage of that. We walk around the neighborhood, run around the campus of LLU, or just let the kids run amok in the driveway!



On June 10, we ventured out to Redlands Market Night. They shut down a 1-2mi long stretch of State Street right down old town Redlands and have vendors set up selling from flowers and lotions to fresh and organic fruits and veggies every Thursday night. I am a Farmers Market prude these days and won't buy my produce from the grocery store, so I am in heaven in Redlands! This was one of Gabriella's first outings, and we survived. I use survived loosely because we were honestly all over the place avoiding people... lol.

(Gabriella DID wear a mask but I let her remove it to eat and we just pulled off to the side away from people.... lol)

A week later we had family come and visit! Pauls sister and her brood came for an afternoon on their "tour de California" summer trip. When they left, his brother and Aunt & Uncle came for an overnighter. It was nice to see family, made that lonely feeling fade for a little bit. And the best part was seeing my 2 neices, 2 nephews and great-nephew!!!!!!!!!!! OH MAN I miss all my neices and nephews back home....

Gabriella and PJ with my Godson Marko


On Fathers Day we went for a drive up to Oak Glen, which turns out is 5k feet elevation, 10-15 degrees cooler and APPLE COUNTRY! We had a great time checking out little parks and shops and enjoying the scenery. We also indulged in a little dessert before heading home for dinner.



We got braver as the month went on, and with encouragement to explore, we utilized our Family Pass to the Aquarium of the Pacific in Long Beach. Not only was it a big deal for us to drive that far, but it was a "public" area. I do have to say, we did an excellent job keeping Gabriella clean and contained and keeping sanitizer companies in business.


We went with Paul as he worked out of the Anaheim branch of his company for a day and we people watched that evening before heading home. We sat at one of our favorite places, Downtown Disney, as much as it was torturous for us to not go into Disneyland. We found a little bench off to the side, listened to some music and the kids got to enjoy some "normal" surroundings. (yeah, our Disney addiction is THAT bad that Disneyland is "normal"). On our people spotting adventures, we saw Nicholas Cage!


I think about everything we did over the course of a month and it seems like nothing. We have always been "busy bodies" and have something going on at all times, so these couple outings is like a typical week for us! The doctor kept encouraging me to get out and do things with her to keep her from severe boredom, so I did. And in reality, this was a TON given the caution we need to put on her exposure. And when you factor in hospital visits 2-3 times a week and typical errands I have to run in shifts when Paul isn't working to watch the kids, I almost feel we did too much! Trying to find a balance in my neurotic tendencies I have developed since her transplant and real life was not on the discharge paperwork..... lol.

Here is the full June album with all of the pictures. Only a few of the best ones are posted here on the blog. Enjoy!!! :)

June 2010

Monday, June 28, 2010

Beautiful Butterfly



Soon after we got settled into our California home and I caught up on some friends blogs, I noticed my friend Amy's pictures of caterpillars turned butterflies she did with her little ones. I was so excited, I ordered some for Gabriella & PJ! On June 3 we got our newborn caterpillars.


We had so much fun watching them grow!


On June 12, they started their process of hanging upside down.


And by June 14 they were fully cocooned....


They all emerged on Fathers Day, and this Sunday, June 27, we decided it was time to let them fly.


We let them go one at a time. This one stayed close by...




And this one flew super far....


The 3rd flew so fast.... I think he was sick of us.


Our last 2 were.... "busy".... and we couldn't interrupt them to let them go. SO we decided to take some close up pictures of their amazing wings and let them go later.




Little does Gabriella realize, but she is much like these little butterflies. Transforming through something so amazing that only God could have created the ability for it to happen. An internal transformation that gives her a new form of life. No longer slowly creeping by, but spreading her wings and enjoying the open air.

Friday, June 25, 2010

Over the past week....

I wanted to post this separate from the biopsy entry. There is so much to be thankful for that these little hurdles don't need to pollute the good news.

Firstly, Gabriella's lovely 'zipper' had went from an open wound, to a light pink, to white and healing, to bright red and raised in 5 weeks. It seems as if she is having some keloid formation. Not a big deal, and nothing that will cause issues, but it is a cosmetic thing. We have ordered some silicone strips her doctor recommended and are hoping they get here soon to try! I need to control this now though before they grow too much because they have grown super quick over the last week!

Gabriella was also experiencing a high heart rate for about a week. They call this tachycardia. The heart rate of most transplant kids is slower, but hers was beating over 140 times a minute. This was potentially a first sign of rejection, but could have been many other things, too. Since her biospy showed no rejection, it was most likely dehydration or stress of another kind, possibly even pain she wasn't expressing. Some people post transplant have a typically high heart rate, meaning it is their normal range, but this wasn't the case for Gabriella. It started to get higher at the end of may and shot up again last week, but for whatever reason (wink, wink) it has gone back down! The doctors will watch this and maybe put her on a beta blocker to help her keep it at a healthy range. Could you imagine this girl on an energy drink???

She is also having nightly headaches. This means I get to purchase another piece of medical equipment, a blood pressure cuff! LOL.... The doctor wants to know what her BP is in the morning and again at evenings when her headaches seem to arise. They could be a side effect of the cyclosporine, but I am praying this isn't the case!

But really, when I see her with so much stamina and SO happy, it makes me forget these little hindrances. :)

Biopsy #2

What a busy week it has been! But first things first!

Yesterday Gabriella and I went to clinic as usual. She had an IV started and bloodwork done, and a quick consult with the doctor. We headed upstairs and checked into the surgical floor for her to have her 2nd biopsy done. She had one done on May 24, just one week after she got her new sparkly heart!

When they do the biopsy, they sedate her heavily and go in through a vein in her groin. (For cath's they go in through an artery). They send soft wires up into her heart and take tissue samples of the heart itself. The risks associated with doing the biopsy are damaging the heart tissue, damage the valves while entering the heart, high or low heart rate episodes and infection.

Why and how often do they do this? All transplant centers have their own protocol, and then it is on a patient to patient basis. They do the biopsy to see if the body is building up a defense system and trying to fight off the heart as a foreign object. The whole point of the immuno-suppressants she is on is to prevent her body from fighting the heart, plus any other illness, off. Biopsies for her will be done at 1month (yesterday), 3months and then annually through her life, since rejection is ALWAYS a possibility. Many think that if she is in the clear now, she is "all good", but that is not the case. We must maintain her immuno-suppressants and continue having biopsies, but also watch her temperatures, weight and heart rate to catch any possible rejection early. It is a lifetime thing, but one we are grateful to have for a lifetime.

Yesterday, they took Gabriella at about 1145a and brought her back to the room at 1pm. I managed to run downstairs, eat, call Paul and use the restroom in 20 minutes because I didn't want to miss the doctor. I'm realizing this is becoming a game for me and at the next biospy I want to accomplish all that in 18 minutes. LOL! It was hard being there alone, but I was relieved it was all simple and without any major events. She slept until about 330p, which I was VERY grateful for! Back in Phoenix, they encourage the kids to wake quickly. Sure, that gets us home quickly, but you get terrible backlash from the sedation meds if you wake them too soon! She slept off the meds and we avoided moods, vomiting and boredom while needing to lay flat for 3 hours. When she woke, she drank Sprite, ate a banana and half a PBJ and was ready to go home!

The results were going to take a while to come back, and I was SO anxious to get them. I knew for sure I would have to wait until our appointment Monday! BUT at about 9am, the ever so lovely Cheri called me and told me that her biospy came back as ZERO rejection! How AMAZING is that!

So we are going to keep enjoying the small miracles that come as a result of the big one. I keep telling people I am waiting for the hard part, but I need to remember the hard part for us was before. Gabriella went through so much with her diagnosis, stroke and overall decline over the last year. I have just seen so many precious kiddos have difficulties after transplant & surgery that I kinda prepared myself for the same given our long stretch of struggle. It dawned on me last night when I was talking to Mathildas mom and she was mentioning all the doctors Mathilda has to see that we did that, seeing a million doctors and fighting for her survival. That was the hard part. It is a relief knowing that her new sparkly angel heart is meshing so well with her body. I am thankful every moment of every day for Gabriella's heart donor... and know that God had intended Gabriella's body to love this heart for a reason.

In the Morning

I had a sweet new friend send me an email the day Gabriella was released from the hospital, one month ago today. We sat in her room just hours before taking our baby home, and watched the story and listened to the song, weeping. A story of not only a CHD hero, but an endless faith in God.

It was then that we knew, we were in the morning.

The story... 10 minutes and a MUST watch.



And the full song.



Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

BEFORE THE MORNING LYRICS - JOSH WILSON

Wednesday, June 16, 2010

Pray for Baby Matilda

Tonight I went to the monthly meeting of Hopeful Hearts at Loma Linda, a support group for heart parents. It was started by my friend Shannon and her friend Camille some time ago, and I was excited to attend my first meeting! There were some people there who had been coming for a while, and some who came fresh from upstairs because they saw a flyer. During introductions you could see the need for some parents to just talk... they had been thrown into this elite club that no one exactly signs up for, and not given an instruction manual. They wanted to share their story, the timeline of events, and cry. We had a short time of that, then a guest speaker give a presentation on an organization that helps arrange services for Special Needs kids (wow, they actually help you here in California?!?!).

As the meeting wrapped up, we spoke to a guy, probably a little younger than me, who came down from upstairs. His girlfriend stayed up to feed their baby girl, Matilda. Their baby was born on 6-10-10 and diagnosed shortly after birth with Tetralogy of Fallot, a once recently fatal heart condition that over the past few decades has turned into a legendary repair. He had so many questions, and was a broken man. His baby girl was sick, and he has no clue what the future holds, and he was scared about tomorrow which will be her repair surgery for her ToF. Not only is having your first baby scary enough, he was facing this as well. We spoke a little about what they have faced the past week and extended our support. He left, but came back with his precious girlfriend. These people were definitely people that needed to be around others who have survived their babies going through heart surgery. His girlfriend was a mess, so nervous for tomorrow, so nervous for the future, so where I was when Gabriella was unexpectedly diagnosed 13 months ago. After talking for a little while with them, a nurse who does the teaching on the floor and we met when Gabriella was admitted suggested we all pray together, so we did. Thats one thing I LOVE about Loma Linda, is no one is afraid of offending anyone by offering prayer.

We exchanged some more conversation and support and again I offered up my assistance since we are staying SO close to the hospital. Before we parted ways, she asked me if I would be there tomorrow with them as they waited for Matilda to get out of surgery. She said she felt a strength from me and could use having someone there that had been through something similar as they will be. It was an honor to be asked, and these kinds of moments remind me WHY God put me through what He did as a heart mom. I desire so deeply to give back and be involved- to use our experience for Gods work.

So tomorrow, that is where I will proudly be. Matilda will be going into surgery around 12 noon PST and her parents will be nervously waiting for that confirmation that she is done with surgery... something we did exactly one month prior on May 17th. PLEASE be in prayer, and that was the last thing her mom asked us all to do... just pray. Whether it be heart transplant or heart surgery, baby or child.... it is never easy to watch your precious one suffer and wonder if they will live to fulfill the dreams you had for them. I hope to be a comfort to them just as Shannon was to me last month as she sat with us before transplant- something I doubt she realizes impacted my experience profoundly.

Matilda's dad noticed a quote at the Ronald McDonald House that he said before he would have thought was hokey, before his life was thrown into perspective... Such simple words, but it is amazing how deep they can run when you are faced with the possibility of losing your child.

"Every day is a gift"

Thursday, June 10, 2010

Diagnosis

Well well well. There are always surprises to keep our faith tested. This week we have been given MANY surprises, therefore requiring us to delve deeper into our faith.

Today we had clinic, as we do twice a week. Gabriella gained .1 kilo, which in my world is good news. The clinic doctor stopped one med, cut back another to once a day and lowered the dose of her cyclosporine from 40mg to 36mg. Those were all great, making for a beneficial clinic visit. I would have been ok if it had stopped there though.

She told us that the final diagnosis of Gabriella's heart condition was coming in formally. She needed to have a talk with the transplant team and the pathologist herself, but it seems as if Gabriella's Restrictive Cardiomyopathy was in fact secondary to another condition. She said it seems as if Gabriella's original condition was possibly Hypertrophic Cardiomyopathy. Hypertrophy is an abnormal growth of the heart muscles cells, causing the ventricles to be thick and stiff (the white sickly muscle I described in my blog yesterday). In her case, it led to a case of Secondary Restrictive Cardiomyopathy, which is where her ventricles were stiff and lost their elasticity, which we knew she had. So basically, her ventricles were stiff and rigid from the outside, and thick and diseased on the inside. Either way, her heart was severe, she was at high risk for sudden cardiac arrest, all possible symptoms were the same and she needed a transplant. The transplant stands as the final treatment.

How does this change the game? Little is known about Restrictive Cardiomyopathy but they are fairly confident that in most cases it is not genetic. Now that they are finding that her primary diagnosis was Hypertrophic Cardiomyopathy, we are faced with the dreaded factor of this being a heart disease passed through family lineage. When I explained to the Doctor that we did not have any of this in our family that we knew of, she said it was very possible for it to be a new mutation in Gabriella. So now, we are going from me wanting to have her native heart genetically tested just in case, to it being a priority. She is writing me a referral to see a geneticist and Gabriella and I will consult with them while here at Loma Linda. If needed, Paul will be tested as well, so we can see if we do carry the gene for this heart defect or if it is truly a new mutation in Gabriella. This is important for many reasons. If Paul or I end up carrying the gene for this heart defect, we will need to be checked ourselves, and most importantly keep a VERY close eye on PJ. More long term, this would play a very important role in us having future children from my own womb. (Come on, I'm only 28 and I am so not done having these amazing babies we tend to create). Anyways, if Gabriella has a new mutation of this gene, this is very valuable information for her as she grows to be an adult, a wife and potentially a mother, God willing.

Here is a link to a description of the cardiomyopathies from a lovely childrens cardiomyopathy organization: http://www.childrenscardiomyopathy.org/site/description.php

So that is where we are now. God is always adding on to our plate. This has potential to be big, or minuscule, and for that answer we will be patient and wait. I have to remind myself, as I have frequently in 2010, that nowhere in the Bible does it say God will not give us more than we can handle. He gives us more than we are capable of handling on our own accord as humans, to see if we will cling to Him to tend to what we can't. Lets just say, I have been clinging to his feet for a while and have no plan on loosening my grip!

Wednesday, June 9, 2010

The heart

Last Thursday, June 3, I went somewhere. It took this long to talk about it because it was honestly a whirlwind of emotions and I had some thinking about it to do. Where did I go? I went to the lab at Loma Linda and saw Gabriella's first heart. Yes, the actual heart they removed from her on May 17, 2010.

What an experience. There was so much associated to why I wanted to go see it. Out of just plain intrigue and curiosity, I had a chance to see something most people don't get to see. I am a very curious person... so just based on that I needed to see it. But I also felt I NEEDED to see it, like it was my responsibility. That muscle in a jar was so much to me. It was what changed our lives. It caused her stroke and took Gabriella's speech, forced me to quit my job and cut our income in half, took our house, and made her feel crummy... it was killing her. But it is also what we so eagerly sought out on our first ultrasound of our first baby, grew her to be 5 years 4 months and 3 days old, allowed me to spend more time with my kids at home, brought family together, brought community together, led us to new friends, raised awareness for congenital heart defects, made more people sign up to be organ donors and best of all, led so many people to a deeper understanding of God and the miracles he performs.

One of the transplant coordinators, our social worker who has never gone in on viewing a heart before, and myself went into the lab where the doctor pulled out the jar labeled 'Gabriella Vega, Restrictive Cardiomyopathy'. He did something I wasn't prepared for and opened the jar and took it out. It was in 3 pieces because of the pathology study, so he gently placed them together. He showed me the diseased part of her heart, it was all white and thick looking inside her left ventricle, partially into her right and up into the part of the atrium that was remaining. He was unable to show me the enlarged areas because that is where the surgeons cut into to attach the donor heart, to pieces of her existing atria. (Here is a great diagram of how they attach the heart to the body: http://www.cts.usc.edu/ht-pg-hearttransplantprocedure.html).

I initially cried. That was the emotional side of me thinking about how that was my baby's heart. Getting past the thought that the heart I gave grew in my belly for her failed her is something I have struggled with, but it hit me harder at that moment. (My spirit knows it was the one God gave her and His plan... no worries on that.) It took a moment for my emotions to steady out, and I felt my anger at everything it had caused. But then, finally, the relief set in. Seeing the sick part of her heart confirmed so much, it was a visual reminder of how bad she was and how short her life could have been. It gave me a peace in knowing her heart now is SO strong and will hopefully keep her alive for a long and problem free life. I started asking a lot of questions as my curiosity settled in. My stomach was stronger than I anticipated, and never once felt grossed out. I was surprised at the coloring of the heart, lacking blood it was a pale muted color.

I walked away with closure, which is what I was hoping to get from it.

You are probably wondering where Paul was. After thinking about it for quite some time, he decided he did not want/need to see the heart, so he stayed with the kids. This didn't surprise me as him and I are much different thinkers, and I was ok with that. He had closure, and I needed it in a different way, you know, the complicated women's way of thinking. I needed the visual and he was ok without that. I took pictures, but after much thinking decided to not post them on here publicly. I don't want Paul to feel tempted to look at them when he doesn't want to, and I just feel awkward posting them. I did however put them into a private, password protected album to share with those that I know and feel comfortable sharing with and that request to see it. And I saved them just in case Gabriella wants to see them one day.

I hope this blog post made sense... between interruptions and my mind being in a bit of a fog lately, I am not sure if this all came out as I had wanted it to. Que sera, sera, right??

Monday, June 7, 2010

470

That's Gabriella, pediatric transplant number 470 at Loma Linda University Medical Center. 25 years of transplanting kids, and she was 470. I'm thinking that might be a good nickname for her. Project 470? Number 470? Four to the 7-oh? ;)

The round of steroids worked! I listened last night and had to concentrate VERY hard to hear any of the rub. Today, the doctor heard NO rub and only a slight quiet murmur. I told him it was hard to displace my thinking from what I had embedded into my head for a year. I had a list of Gabriella's heart defects memorized and understood, and now when I hear murmur, it is COMPLETELY unrelated to everything I knew before! In transplant kids, it is common. All the valves are sewn back together and can cause a slight sound, nothing to worry about. An old effusion is gone, her ECHO's look awesome..... Her heart is ALL settled in and looks as if it is loving her body! And she is loving it back! She wanted to go for a walk this weekend, and said she did not want her stroller!!! That was like music to our ears, because she never felt good enough to walk distances, and when she did she would always turn lovely shades of blue and get tired easily! She walked about 3 blocks, and told US we were going too slow!! She feels great, and looks great.

I also took in my letter to the donor family today to clinic. 9 pages and a card I bought almost a year ago that was made specifically for organ donation. I gave it to one of the girls, and she will send it along. I'm not too sure how long until the family finds out a letter was sent, but I will now just rest in patience and peace in knowing I wrote that letter and sent it on.

Someone told my mom yesterday that she felt it was time for my mom to stop wearing her Gabriella band and DonateLife pin because Gabriella was healed. I am totally ok with anyone that feels it is time to stop wearing their Gabriella band, and I know it is no reflection of the level of support or love anyone has for her, but to tell someone to stop is much different. Discerning what is personal opinion and that of God is not easy, but I am sure this was her personal opinion given the sporadic timing and circumstances.

Gabriella was not healed, she was given new life- how much more amazing is THAT?! She was given this limited opportunity to be completely reformed at the mercy of God, but at a price. The price not only what she was already suffered with her stroke and loss of speech, but being risks to her kidney function, high risk for cancers, difficulty bearing children, gum issues due to the cyclosporine, possibility of future transplants, loss of much of her 5 year old innocence, being on medications for the rest of her life, inability to recover from the common cold or virus without much difficulty, and the list goes on. The prayers are needed for her continued health, as she has not been miraculously and completely healed. But at this point of the journey, when God has just given her new life and she is full of so much light, is the most important time to be praising God. This is the time He craves our adoration and love, as a 'thank you'! To stop wearing our Gabriella bands right now is like saying we are done with this part of the journey, and puts an end to the avenues they can bring in glorifying God in this journey. The stories we can tell when someone inquires about the band or pin can impact people for years to come, spread awareness of Congenital Heart Defects, the importance of organ donation and making that decision for your children and the impact God can have in ones life. It is never time to stop supporting, especially someone who's journey is not over. Taking the blessing from God and then closing that chapter is not what He wants us to do. It is now our job to take his blessing and grow on it... and that it what we will do. So my message to the lady who said it was time...... we don't close doors. We don't put limitations on God's work. And I am almost positive that since God has led us every step of the way to where we are right now, He too will tell us when it is time to remove the reminder and symbol of so much from our wrists.

People still wear Livestrong bands, right? ;)

I wanted to again thank everyone for your prayers and support. Gabriella is seriously a walking miracle, and to be able to share that with everyone has been a blessing and honor for ME.

Thursday, June 3, 2010

My donor letter...

I spent some of the day Monday writing the letter to our donor family. I felt it an appropriate day for many reasons. For one, it was Memorial day, a day of remembrance for the bravery and dedication of those who have fought to save our country. Gabriella's donor saved her life. Also, Gabriella was sweetly asleep next to me on the couch, and Paul & PJ were driving in from Arizona, and I was able to sit in quiet reflection of the past 2 weeks. I felt pushed to write everything out I had in my head and heart over the weeks, and turned my notes into a 6 page letter. There is a company called OneLegacy that works in this area as the local Organ Procurement Agency. They have this list of guidelines to follow in order to ensure confidentiality and respectful content. I read the guidelines, then I prayed. I let God guide my words. I write, it's just what I do. I have no problem sitting and spilling my insides onto the keyboard. Of course, most of the time I go back and clean up some things because when I get really emotional I can get messy.... lol. I am going to spend the weekend listening to God and hoping he gives me guidance on the letter. If I need to change anything, or wait for a while to send it, I know he will tell me. Unless something happens otherwise, I will take the letter to our transplant team on Monday.

I am at peace with whatever happens next. If the donor family accepts it and never writes back, if they do write back, or if they never accept the letter from OneLegacy, I'm ok. Whatever happens next in this chapter of transplant, I just need to make sure I do my part in contacting them. Having received a gift of this magnitude, there is no way I could NOT attempt to express my "gratitude" (that is such a minuscule word for this, isn't it?) on behalf of not only us by our family and friends as well. And if we are fortunate enough to find out the name and age of Gabriella's sparkly heart donor, I think it will be a blessing and an honor to pray for that child's family more specifically.

backlogging... updates and pictures

I have some great pictures I haven’t yet shared but have some time now to sit and post…

April

Some goofy random pictures of the kiddos
From Share

From Share

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Gabriella with our friends puppy. She has seriously adopted this pup as her own from the minute she met her. I can’t wait to get Gabriella a puppy/small dog after all of this… she so deserves it.
From Share

From Share




May

On May 8, Gabriella attended an event by HopeKids, which is an organization proving families of sick kids the opportunity to attend a wide variety of events! Their organization is awesome, as is the people working and volunteering for them! We went to a mother/daughter glamour day where we had lunch and were pampered with makeup, hair and nails.
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This is Gabriella and Damaris. Damaris is the daughter of a friend of ours and they found out last August she had leukemia. This girl is another fighter, and always has this precious smile on her face!
From Share




Mothers day was another busy holiday for our family! I don’t have many pictures, but I do have this one of me and my babies and one of my mom, my sister and me.
From Share

From Share




And the day before Gabriella’s heart call came, Paul and Gabriella attended a HopeKids event to see the Ballet Etudes, Cinderella. They had an awesome time and I’m so glad they got that special time before she got her sparkly new heart!
From Share

From Share


And to send you off in giggles... here is a video of Gabriella at a baseball game we went to in March thru Make a Wish. She got a kick out of walking the catwalk.... click on it for the video!!!!
From Share

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