AHA Start! Heart Walk 2009

Thanks to all who came out this year to the Heart Walk and got your walk on in honor of our little heart diva as well as the many other children and families affected by Congenital Heart Defects(CHD). We had a pretty good turnout, thought not as large as our first year. Oh well, just gives me that much more motivation to get out there next year and really recruit all of you who didn't show(excluding the ones who couldn't , you were there with us in our hearts that day ;).

We started this tradition of participating in the walk just last year. It was the first time I had really heard of the walk and knew instantly this was something we wanted to do not only to help promote awareness, even if only locally, but to make a lovely tradition we do yearly, JUST for Ava. Something she can look back on and be proud of. Seeing how so many of her friends and family spend months soliciting donations, recruiting team members, ordering shirts and come out much too early for a Saturday, to walk 1 or 3 miles, just for her. A very small tribute to the little girl who has already endured more than most of us ever will in our entire lives.

With that being said, I truly hope to see more family and friends out in the coming years! :) It's really for a great cause and is probably the best you will ever feel waking up before 8am on a Saturday. Plus, it only takes less than an hour to do the 5k walk, and it's just one day a year! ;) Another gigantic, heartfelt THANK YOU to those who have joined us the last two years, you all are amazing!

Not many photos taken this year, but here are a few, the above picture is the image that I put on the back of Ava's shirt, it's perfect!...

Preschool, Take 2!

So because of Ava's cath being scheduled one week after school started, Miss Ava had a two week break and started school again today. This time, we were ready. ;) Ava has really been eager to get back to school, to class, to her teacher and her "friends." We arrived to class this morning, and Ava is playing, a bit apprehensive at first, but that's her, always. But she warms up a little and is drawing on the chalk table(whoever thought of making a chalkboard topped kids table is a freaking GENIUS!) and notices many other parents saying goodbye to their little ones, and leaving. I see the lip start to take form...We let her play a little bit more and then when we are pretty much the only parents left, we start to say our goodbyes. The lip is in full effect now, she is trying SO hard to not cry, and clings onto me for dear LIFE. Her teacher comes over and suggests picking Ava up while we say our goodbyes and leave, to see if that helps. Ava practically jumps into teacher's arms(mom suddenly = chopped liver) and they start talking about all the fun they are going to have today. So we tell her we will be back soon, and leave to smiles and waves. YAY! Upon our arrival teacher tells us Ava had a super great day and didn't cry or pout one single second after we left! Success! A few photos from the day...


















My, how she has grown! I cannot wait to see what this next chapter in my little diva's life unfolds. :)

Echo/Followup Appt News!

So last week Ava had an echo, to check the overall function of her heart, and to also check the placement of the stent that was placed in her last cath, as well as check on that leaky conduit. Ava did really well during her echo, I layed beside her and we watched, "Dora Saves the Mermaids" while our lovely echo tech did her magic. The whole thing only took about 45minutes, and only took that long because Ava's aortic arch is always tricky to see.





Miss Ava doing her cath thing, what a pro...




So a few days later we met w/Dr. Van Gundy to go over the echo results, as well as followup on the Cath and make sure the site was healing well, etc. Ava was definitely healing well, hadn't developed a cough or anything else like that. So we moved on to the Echo. Everything looked pretty good, overall. But the conduit was still very leaky. So he said the next step is presenting her case at the next conference. He said his choice is to leave her be for now, but it is always a "group" decision. Plus it's always nice to have the opinion of many dr's, something I really like about the conferences they hold. He said we could chose to have her lung perfusion now, or we could wait. And in his opinion, we should wait a couple months out. We agreed, let the girl rest and stay the heck out of the hospital, hopefully until next year. The lung perfusion will show him the pressures on each side, and how much more he needs to dilate her stent on the left side. Which he can't do for about 6-9months from now anyways, so we REALLY might as well wait on her perfusion. :) Next checkup with cardio in 6 months, and he would let us know what was discussed at the cath conference. He also briefly inquired about where would we like to have the next OHS done, etc. Even when you KNOW your child needs more surgery, to actually talk about it, makes it real. So I had to take a minute and let my heart catch up with my brain. After that I was okay though. :)



So while waiting to hear how the conference went, I was a little worried, because you just never know, they could of all decided the leaking is too much, and got the got the OHS wheels in motion, set a date right then and there. But luckily, we are going to wait, we are going to do the perfusion scan, dilate the stent, and do another echo, check and see what is going on at that point. No talk of surgery = HAPPY MAMA. I know it is still in the future, somewhat near future, but we have time to worry about all that later. I love time. :)

Haircut Honey!

So on Tuesday, after Ava's Cardio appt(which I will get into in another blog at a later date), we stopped by this kid's hair salon(Tangles, off Auburn Blvd, but moving soon to somewhere in Roseville) 1, because it was on the way home, 2, because Ava's auntie Brie takes her boys there and she's been satisfied with the quality, 3, because it was $10 Haircuts Tuesday, and lastly, because Ava had SPLIT ENDS and a wonky "Mama haircut". This was her first "pro" haircut, but it was definitely time to get something done with that mop up on top of her head, by someone who would actually know what they were doing with a pair of shears. :)

The actual place is cute, in a you probably have to be a BOY to fully appreciate this sorta way... But I liked that I didn't have to make an appointment, and hey, if the experience was terrible, we were only out $10. Ava was not so keen on the water that was sprayed on her hair, because some of it got on her face, and, well...she's a diva. But despite Ava taking turns mean mugging the stylist and whipping her head from left to right and back again, we somehow got about 4 inches cut, and it's definitely more even that I ever got it. :)



Plus, Ava was given one of her most favorite, but seldom allowed treats, CANDY in lollipop form. Mmm.

So, this is what we started out with...


And this was the final result...


A pretty darn cute cut! :)

The Good, The Bad, And the AVA.

Ava had her third cath of the year, second time trying to place a stent, and....IT WAS A SUCCESS! :) So as the sign her Daddy made her so clearly states, AVA ROCKS!!! The good.

Dr. Van Awesome(Gundy) found that little Miss Ava's Left Pulmonary Artery was only 2.5, normal is 7, in size. The general rule of thumb is to only double it's size at one time, so we got it to 5, Part 1 of the bad. Ava will need the stent to be expanded in 6-9 months to get that LPA to a better size, Part 2. Dr. V found a huge increase of leaking from Missy's shunt, part 3. Now, it's been leaky for awhile, that's just how it goes. But part of the possible reasons for the sudden surge may be the wonky pressures due to her LPA being SO stenotic. SO, the stent MAY help, it may not. Ava will have an ECHO in 3 weeks, and then every 3 months after to check that darn leaky shunt.

A run down of the day...We all woke up around 4am, were out the door by 5:10, made a quick stop at Starbucks(necessity) and was at UCD admissions just after 5:40. Not bad. They changed around how they admit Cardiac Cath's now, so Ava went straight to the recovery area instead of up to 7, then back down to 1 where the Cath Lab is located. Makes sense, and this way we don't have a "neighbor" we are worried about Miss Crazy waking up. A little before 8 the anesthesiology crew started appearing and we made our way to the lab. Ava was given a med cocktail(versed and benedryl) that made my little chica QUITE giggly and loopy. She was laughing at the lights, found it hilarious that she had a nose, and was singing up a storm. So instead of her usually scowling at everyone right outside the cath lab doors while they are prepping for her inside, she was waving and saying hi to everyone and serenading them in between random giggle fits. :) Plus, she got VERY sleepy. So we took her back once they were ready, they let me stay until Ava was asleep, Greg watched through the partitioned window, and we made our way back to the waiting room. I am thinking we got back in the waiting room just after 9am. We sure didn't have to wait very long, Dr. Van Gundy came out around 11:30(though I overheard the front desk lady on the phone with recovery telling them that, "Little Miss Bolima is about 30Min's out", so I allowed myself to imagine all had gone well since there were no other orders with that call, and it had been such a short time. Luckily, I was right! Dr. told us the news, which I went into earlier on here, and we waiting about another half hour, 45Min's before they collected us and we walked Ava back to recovery. Now, there was two super nice nurses taking care of missy in recovery, one of which said she TOTALLY remembered Ava from before(3 years ago) when missy was up in the PICU. She was super happy to see Ava and how well she looked. It's always really nice to see people, Dr's nurses, etc, that ONLY knew Ava from that time, for them to see her now, the reaction is always the same. You could literally pick their jaws up off the ground, and the smiles are infectious. I love the gentle reminders of how far she has come. So they get Ava all settled into recovery, and tell me that she will probably remain asleep for a couple of hours, a minimum of an hour, though. And once she is awake they will remove the oxygen mask and we will make our way up to 7. Not 15minutes later guess who's eyes go FLYING open?! And what's the first thing she does, YANK that oxygen mask off before anyone can react and then she goes straight for her IV, boarded up hand. Luckily, we could stop her before she yanked that thing, but barely! This girl has some serious superpower strength when she feels the need to. Of course, she was really, really angry and screaming like she's never screamed before, thrashing around, you know, all the things you should NOT do just an hour after a cath/stent placement. So they gave her a little bit of morphine and Ava calmed down instantly. We got up to special care on 7, and see yet another familiar faced nurse. She recognized Ava by name and said again how healthy and big and beautiful, etc she has gotten now. :) We had quite a few more faces pop in to see Ava that day. Even Velma, the super sweet social worker. LOVED her. Ava was kinda quiet and you could tell she was upset with us all, but did not fuss or complain. As long as we let her eat what she wanted to, and watch what she wanted to, and kept nurses out of her face(lol), she was a happy camper and finally came around and stopped saying she was mad at her Mommy and Daddy(again, who can blame her, though). So we watched Dora the Explorer and 101 Dalmatians about 100 times each, Ava ate lots of yogurt and Doritos, drank apple juice and we waited. There was a bleeding issue while we were still down in recovery, her cath site started bleeding heavily and that caused some concern with Dr. V. Of course. And then again, though not nearly as severe and it subsided on it's own once we were in Special Care on the 7th floor. So basically we had to wait the 5 hours, PLUS, to make sure it didn't happen again. We checked her at 7:30, no bleeding, GREAT! Dr. said to check again in an hour, if there is still none, we could go home...Ava's night nurse checked again, all was OKAY, so she got the discharge papers together, the IV out and away we went! Ava sang at the stars the first half of the car ride home then fell asleep, and stayed asleep until about 4:30, 5am this morning. She wanted hugs and kisses and said lots of I love yous. Sweet girl! Her daddy got her back to sleep, though. :)

All in all, we are so happy and so relieved that our diva has that stent finally in a PERFECT spot. It is a huge relief. And while we MAY be looking at another surgery much sooner than originally anticipated(to replace the shunt), we may not be, either. We will cross that bridge when we get there. This is our life. We left that second amazing huge double ventricle repair knowing that although she didn't need that third repair OHS, she would still need a couple more OHS, to "replace parts". We are still very lucky, very blessed, and I hope we never lose sight of this. We have a darling, loving, bright, sunny, brave, happy, independent, adventurous little girl that makes friends with everyone she meets. Ava does day to day things that we thought we might never see her do, I wake up every day and am SO thankful. I seriously wonder how we got so lucky.

A few photos from the day...






-The very nice lady in the waiting room let Ava pick out some stickers. Ava of course, picked the hearts, and proceeded to stick them all over not only her face, but her baby doll's face as well. :)









-Ava drew this super funny picture and when I asked her who it was, she pointed at her nurse, hee hee! Pre-cath.



- In recovery, just a little oxygen mask until the diva full woke up on her own.

-Ava wanted Daddy's hat. Not very happy with anyone, who can blame her, though!



-But all smiles and snuggles by the end, that's our missy! :)

Pre-Cath Bubble!

The week prior and the week following a Cardiac Catheterization on Miss Ava, I like to be extra cautious and keep her as away from the general (germy) public as possible, without any of us losing our sanity! Which you would think would make for a super long, dragged out, boring weekend.

NOT SO! Mainly, because I appreciate and relish in how slow the week before a cath goes, especially after the "year o cath's" we've had this year. Ugh.

So because Ava's first day of Preschool sort of completely blind sighted us, she DID attend school on Monday, but we made sure to get the OK from her Pediatric cardiologist to keep her out of school the rest of this week and all of next week, HUGE relief. I would of kept her home regardless, but it's always nice to have a doctor backing your decisions. :)

And I DID take her to Sutter Memorial with us on Tuesday to drop off some care packages, she is my inspiration to get involved and reach out and try to help other families going through what we went though and continue to go through for over 3 years now, I wanted her to experience it. Plus, we were in the lobby the majority of the time and it was a pretty quick trip with plenty of hand sanitizer pit-stops and "don't touch that!" reminders. :)

But other than those two exceptions, we have been hermiting it up at Casa De Bolima. Lots of dance time, lots of drawing, lots of blocks, lots of learning to play memory and candy land. And even time for playing with mommy's new web cam, which seemed to be Ava's personal favorite. :)






Thank you bunches to the friends and family who understand the lock down mode we go into the week before and after any procedure Ava has, I realize she just doesn't get sick very often and is an otherwise healthy little girl and a few people still seem to think I "overreact" or am being "paranoid" but show me one child who goes through even 1/4 of what Ava has gone through and try to tell me there isn't a terrified parent behind that child ALSO taking every possible precaution to keep their child healthy and OUT of the hospital. Why would we ever risk it.

So, I will ask again that you please send all your good vibes, prayers, chants, thoughts, ETC, to Miss Ava over the next week or so, but especially on Monday(day of her cath). I will update via text and fb throughout the day Monday, as usual. And once we are home and Ava is settled, I will update this blog. Loves!

Ava's First Day of Preschool

Today I set my alarm for about 6:20, woke up, made some yummy chocolate french toast(recipe: ), ironed G's clothes, made sure his lunch was ready to go, etc. Hubby bathed Ava, then I got her dressed for what we thought was just preschool orientation. We were all out the door and actually on time. Got to Greg's school, hubby dropped the kids and I off while he found parking(the neighborhood surrounding the school turns into a ZOO the first couple of days of school and at any school event!) Watched lil man try to ditch his sister and I to go hang out with his friends, I let him(he's a 4th grader, I SUPPOSE I should go ahead and cut that cord now. ;P) Saw and talked shortly with Greg's teacher(same teacher he had last year, she now teaches 4th grade again), got assigned some MORE books to code(new system in the school library and I helped out last year, and I guess I am helping more this year...), I took a paparazzi-style photo of G in front of his classroom talking with his friends, it's the ONLY way to get a picture of him in front of friends these days, good thing I have awesome camera ninja skills. :P We also stopped in to the Kindergarten room, which houses the GREATEST Kindergarten teacher of all time, seriously, this lady was just BORN to teach, especially Kindergarten and I cannot WAIT until my second child is in her class. But, it was a bit chaotic in the Kinder class, to say the least, so we ducked out before being able to say hello. If you're reading this Mrs. Blaine, HI! We will try to stop by Wednesday to see you again. :)

We make our way over to Ava's school, which is about a mile away, if that. Walk to her classroom, and what do I see...parent's leaving without their kids, and once we get into the class, I am seeing lots of little backpacks on their assigned hooks...oh no...I see Ava's teacher, rush over and ask, "Isn't this just the orientation?" She informs me that it is a small meet and greet for the parents before class starts and we are more than welcome to stay as long as we wish today...DARN IT! :( Ava didn't have her super cute first day of preschool outfit on or ANYTHING! Bummer. Plus, I so was not mentally prepared to leave her somewhere today. I hadn't snapped any photos of her walking up to her first day of class, we didn't have her backpack or little Ava lunch, nothing! So on top of just being that silly sad mommy watching her kid play quite well by themselves, I was sad because I like to "plan" and "document" these days, start new traditions, etc.

But anyhow, Ava started playing very well by herself so husband and I thought it was a good time to go pick up that backpack and lunch, I told her we were leaving and that we would be right back with her backpack, she yelled, "Bye BYE!" and gave me hugs and kisses. The picture of "I'm SO ready for preschool, Mom" perfection.

Fast forward about 15 mins when we get back to the school, we park directly across the street from her class and as soon as I open my door, I hear kids screaming. Of course I instantly shuffle through the cries to see if one of them sounds like Ava, they do not, I calm down. We make it into the room and one of the teachers rushes over to me and lets us know that Ava JUST stopped crying...darn it! She is sitting in circle time and has her back towards us, luckily. But she turns to look at someone and I see her lil red face and dried tears, poor Ava!! So we decide it's probably best to sneak back out before she sees us in case our departure is what started the tears, now that she's fine and singing along with her class...

Once we picked up Ava, she met us at the door with her teacher and was all smiles, happy girl. She had lots of fun, and is looking forward to going back on Wednesday.

So today was definitely crazy, and didn't go as planned at all. But it was also a great day. After we picked up Ava from school, we headed over to Andrea from Hearts of Hope and picked up some more items for the Care Packages I am working on. We have the first delivery since Michelle and I took over planned for tomorrow at Sutter Memorial. I still do not have everything for the packages, but they are coming along nicely, and I am thrilled. :)

Today, I am officially the mommy to two school-aged children. Time sure does fly... :)

When I Grow Up...

Every child loves to imagine what they will be when they grow up. Limited only by their imaginations, they could dress up, play and pretend for hours on end and daydream of the day they will be a world renowned doctor, an Olympian, a chef, a famous rock star,a veterinarian, etc. I know I certainly did, and both my children are no exception...

For many kids, however, life unfortunately is more about hospital visits, medications, keeping track of calories and weight gain, and just trying to get through today than it is about imagining the beauty of the future.

Luckily for us, there is a local group dedicated to giving heart children a sense of normalcy. The group is called 'Angels For Hearts' and they sure do live up to their name. This past weekend we were lucky enough to be invited to an event they were holding at UCD. The event, "When I Grow Up..." was aimed at heart children under the age of 18(I think...) and was meant to help them to remember that, "Dreams are only limited by imaginations." There was a firetruck, ambulance and race car parked out front, there were firefighters, ambulance/EMT's, police officers, a nurse and a doctor, a ballerina, teacher, chef, etc available for the kids to talk to and lots of hands on crafts to entertain. The Firefighters outside gave great tours of the firetruck and answered any and all of my son's many, many questions, even took him up to the top of the truck! There was food catered by Panda Express and yummy ice cream afterwards. Great little goodie bags stocked full of great stuff went out to each heart child, Ava was most fond of the bubbles(no surprise there!

We originally thought we were going to be out of town and miss this event, but due to Ava calling the shots(and a 24hr tummy bug) we were able to attend. SO glad we did! Both of my children were treated so well, they had a blast and it was the talk of the weekend! Every person from this group, whether it was someone who started the group, someone there just to help volunteer, etc, were very nice, called each child by their names and offered up plenty of positive praise. A very generous and thoughtful group of people who genuinely care about the children they are helping. I love it. :)

Some photos from the day...

Those Single Moments...

They're so bittersweet. It could be a smell, an article of clothing or a certain toy, a shift in the air, or a song on the radio, and all of a sudden I am right back in the middle of it all. All the hospital stays, all the uncertainty, that fear that just won't leave you alone, back to Ava being this very sick, very small baby whom we barely knew at all but loved so deeply and dearly it hurt. Right back to the memories of not only Ava being sick and in pain, but seeing her big(but still so little) brother PAINED by witnessing all of what his sissy was going through, and only being able to fully comprehend a small percentage of it.

I generally pride myself in "staying strong", "focusing on the positive", and "staying thankful for the blessings", and I am not sure anyone can fully understand what effect this has had on us, as her parents, as her siblings, etc, unless you have been there. That's not to say they don't try, though. I have a wonderful circle of friends. But sometimes, I am overwhelmed, and I ride it out. I get sad, I get scared, I get confused, I get ANGRY.

CHD is a terrible monster affecting so many of our children, and there is NOTHING we can do to prevent it, there is NO cure, our kids are helpless to this disease. It robs so many children of a "normal" childhood, it steals so many things we take for granted.

When Ava was so small and fighting to breathe on her own and to thrive and survive, we were told to expect this from now, on. That she might never have that "normal" lifestyle. She may always need oxygen/cpap, she may never eat orally because not only of her vocal chord paralysis, but all the side effects from DiGeorge and being intubated as many times as she had/has. She may never be that happy baby. We should expect a life of ER Visits, isolation at home for fear of anything even as small as a cold bug landing our daughter in the hospital hooked up to a million machines struggling to fight off the infection, continuous feeds from a machine through a tube straight to Ava's stomach, a loud CPAP breathing machine to make sure Ava doesn't have any sleep apnea or lung collapse issues, possibly never reaching many milestones, numerous weekly doctor visits, and even more therapist visits.

Ava was diagnosed at birth with multiple congenital cardiac defects, including large ASD and VSD, an Interrupted Aortic Arch, and Left Ventricular Outflow Obstruction, or as her Cardiologist says, in short HLHS. Ava has had two open heart surgeries. The original plan was three corrective surgeries.



The first surgery was a modified Norwood taking place when my daughter was exactly one week old at UCSF Children's Hospital, and was complicated by a stroke that occurred in the OR. This first surgery was about 6 hours. The above photo was taken the night before her early AM surgery. The post surgery recovery was very bumpy. Because of Ava's DiGeorge diagnosis, we were not only dealing with her heart recovery, the vocal chord paralysis, GI issues, but also severe calcium issues, etc. Ava was three weeks early, and had lung development issues, as well. The scene immediately after this first surgery is something I will never forget, though I wish I could. I couldn't even see my tiny baby, she was hidden behind machines, behind many, MANY nurses and doctors working hard to stabilize her. That first night was very rocky, and very scary. The photo below is 2 days post-op. I still can't bring myself to post photos any sooner after surgery than that...




Recovery was going somewhat well at UCSF, though what they say about 1 step forward, 3 steps back rings very true for our heart babies. Soon we were in the "step down" unit, which is where the focus is on parent's learning all they need to do before discharge and nurses are there to basically "assist" when needed.







Dad found ways to entertain himself(and numerous nurses) during those long, monotonous days at the hospital, he gave his daughter Mohawks with the hand sanitizer gel!


Soon Ava was stable enough to transfer back to UCDavis Children's. Where we spent NUMEROUS weeks. There were many reasons our stay at UCD was extended by about 2months, frankly half the reasons I still don't fully understand, the other half sort of still upset me too much to speak fairly of, so just know that there was a small handful of nurses as well as Ava's cardiologist that took amazing care of Ava while she was there, always had our backs and Ava's best interest at heart, and we are forever thankful to THEM. A few photos of Ava's UCD extended stay...












The last photo is the day Ava was finally discharged, for good! It was also my son's first day of 1st grade, a very joyful day all around!

The plan for that was to let Ava show us when she would be ready and in need of her second corrective surgery, a modified glenn, which many of the UCD staff was expecting to see us by the holidays, or within 6 months. Ava spent the next year at home. As her first birthday fastly approached, so did the signs that she was ready for stage two of the three stage repair. We were able to wait until after her birthday and her surgery was scheduled for about a week after her first birthday, or a year after her first surgery. We again made the trip out to San Francisco the Friday before her Monday Surgery for a Cath, Echo, etc. Ava was no longer a small, fragile newborn. She was now a fullfledged curious toddler and it didn't take her long to discover that if she moved that glowing foot(the pulseox) it made the machine over her head chime, which she was quite fond of and giggled over for hours...





The last photo taken after her pre-op cath.

Ava's outstanding surgeon had called us prior to our arrival and we had spoken a few times on the subject of a possible FULL REPAIR. Meaning no third stage and TWO ventricles! He answered our many questions, repeatedly, and let us know this was something he wouldn't know for certain if she was a good candidate for until he had her on the OR table. We were very nervous, but had the utmost faith in this man. Ava's second surgery was close to 9hours long, and was indeed a FULL repair. Something in the beginning of Ava's Journey that was thought to never be possible for our baby girl, had just happened. What a blessing, what a miracle! This time, when I walked back to Ava's little spot in the UCSF CICU, the hall outside her room and the room itself was not full of people in white coats and blue hats. I was able to walk right up to my daughter, and though there were numerous machines and lines, they were quiet. Ava had a single nurse that night, in fact, she had a SHARED nurse that night. Her first night after the biggest surgery of her life, probably ever, and my baby girl was the picture of stable post op patient perfection! Though seeing her immediately post op wasn't necessarily easier, doubt it ever will be.


About 3hours post-op.

Two days post-op, extubated and enjoying a little nap. :)


Always stylish. ;)

So this time around, recovery was speedy and somewhat "bump-free". There was one setback, that was the discovery that Ava was now pacer-reliant. Ava had a pacemaker placed about 10days postop(the amount of time they allow the heart to heal and see if the situation corrects itself...it did not..) We were home in about 2.5weeks. Day of discharge...




And while Ava has been and continues to be somewhat delayed in a few milestones(didn't walk until about 19months, still isn't talking much, etc), and though Ava has a bigger entourage(her doctors, teachers and therapists) than most children her age, we have so much MORE to be thankful for. Ava has always been a very happy, very LOVING baby. Those of you who have taken the time to truly know her, know what I mean. This girl could live off hugs and kisses and snuggles and smiles. We have only had one scare resulting in a middle of the night ER visit, and it turns out that actually NOT a big issue(relatively speaking, of course). Ava is never sick, and if she does catch a bug her body does an unbelievable job of fighting it off typically within 48hours(pretty impressive for being born without a thymus, eh?? ;) She is smart, very smart. The kind of smart that frightens parents and teachers alike, that smart. Ava is our little daredevil. If she trusts you, she trusts you 110%. If she gets hurt, she brushes herself off and jumps back up and tries again, with a smile on her face. If she see's a heart, hears the word "heart" or hears someone say "scar" she is instantly tracing that beautiful line down her chest and grinning from ear to ear. She knows her heart is special, and that line down her chest, it's beautiful and something to wear with pride. I hope she always has that pride...


My daughter is a fighter. A warrior. A hero. An inspiration.


Ps- for those who do not yet know, Ava's Heart Catheterization(yes, another one, hopefully the last one in this series) has been scheduled for Monday, August 31st at the UCD Cath Lab. Prayers, good thoughts, and Ava lovins, please!

Pss- If you haven't yet, please please please consider joining us for the American Heart Association's START! Heart Walk coming up quickly on Saturday, September 19th. This is our second year doing the walk, I believe we had about 35 registered walkers, my goal is BIGGER this year! If you cannot physically be there, or even if you can, and are in a position to donate, please do. The link to my personal page where you can join or donate, is below. Thank You! GO TEAM AVA! :)

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=292584&supId=222573359