Friday, September 25, 2009

Soccer Sweetie!

We signed Miss Ava up for a Mommy/Daddy and me soccer group, which just started last week. We meet weekly at Carmichael Park for half an hour in the am and the kids do some super CUTE, super basic soccer drills to kind of introduce them to the game of soccer and peak that interest. I am really excited for Ava to be in this, especially because we were able to join with her dear sweet heart twin Maddie. Maddie and Ava are only a few months apart in age, both have amazing and beautiful mended hearts, as well as DiGeorge Syndrome. Maddie's mama and I met a while ago and got to talking about our little divas and were in absolute SHOCK over how much the two shared in common. I am so thankful that our families met and our daughters will have each other to lean on and support as they grow, as well as their mommies having someone who literally knows EXACTLY what the other is going through. Huge blessing!

The Divas...

So soccer seems to be going well. Finding shin guards and cleats(gave up on those) posed to be quite a challenge, they just don't make much sports gear to fit these lil kiddos! Ava is L-O-V-I-N-G every single minute of it and finally has a female friend that she doesn't shoot dirty looks at in the few and rare moments she's not altogether ignoring them. Heh. And seriously, there is probably nothing cuter on this entire PLANET than seeing two little girls who have been through more than many of us ADULTS out playing together amongst their peers and not only keeping up, but kind of kicking some butt, too. :)

A few photos...

Wednesday, September 23, 2009

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!...

Monday, September 14, 2009

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. :)

Thursday, September 10, 2009

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! :)

Tuesday, September 1, 2009

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! :)