Angel Heart

Fall Time

2009-11-02T03:21:00.000-08:00

I love this time of the year. Sunny days with cool evenings. Although this California weather is still too warm, I'd be happier if it cooled down just a tad bit more.

Our trip to the pumpkin patch turned out to be a hot one. It was a very sunny and warm day. The kids still enjoyed picking out their pumpkins with the whole family.

Halloween seems to have flown right by this year. We Trick or Treated with Auntie Sasa who made a crafty owl costume, Auntie Aimee, Riley and little Adam this year. Marcelina was Hannah Montana, Alex was a cowboy and Angelina was Supergirl. The kids were happy with their loot, but Mommy was definitely tired from the hilly neighborhood we walked through! At least the kids came home happy and tired =)

We managed to get over having the flu, all of us got sick, but we survived. Little Alex was the sickest with a fever and the works, but he is such a trooper. He is always more concerned about not getting others sick, than about how he feels. Angelina actually did quite well, it seemed to have hardly phased her.

Hope you are all staying healthy!

What a way to end the day!

2009-11-02T01:21:00.001-08:00

2009-11-02T01:20:00.001-08:00

Heart Gala Photo Shoot

2009-07-12T08:41:00.001-07:00

Not too bad for not being very cooperative!

A little bit of our summer...

2009-07-10T02:25:00.001-07:00

Some videos down below on our Monthly Post ;)

Our Monthly Post ;)

2009-07-10T02:12:00.000-07:00

We are doing good! Trying to keep cool in this warm weather, and trying to keep all the monkeys entertained. We've been hanging out with friends and family. We celebrated Alex's 5th birthday, stayed @ one of the resorts from our timeshare, went to Las Vegas and stayed @ a resort there too. Angelina participated (although not very cooperatively) in a photo shoot for Loma Linda's Heart Gala.

Angelina has stayed strong and healthy. Always trying to keep up with her sister, brother and cousins.

Next week we will have our first meeting for our new support group, Hopeful Hearts @ Loma Linda's Childrens Hospital. Along with 2 other heart Mommies, we hope we can be there for other heart families.

Here's a few videos of Angelina talking and having fun at the park!

Hope you all have a good weekend!

Happy Father's Day!

2009-06-20T18:19:00.001-07:00

We love you Dad, you are the best! Happy Fathers Day to all the wonderful Daddies out there!

The Worst Blogger!

2009-05-13T00:01:00.000-07:00

I know, I know! I win the award for worst blogger right? I'm sorry! Although I have to admit when you threaten to send a search party out- I thought it might be fun to have a little pow wow!
But seriously we are all doing well. Little bumps in the road, that I guess are to be expected. Why haven't I blogged? Well, first my laptop died :( and my hubby definitely believes he can resuscitate it :) except he's been working 6 days a week. Now obviously more work is a good thing, but not always easy. One day to rest is not much, so I'm not really going to ask him to stare at my laptop on his one day off. Second, we had issues with our phone land line at this house, we have 4 bedrooms and only 2 jacks- one in the kitchen and 1 in one of the kids rooms (weird). The jack in the kitchen doesn't always work either! Which is not a huge deal because most of the time we just use our cells. But we've had some probs with the Internet because of it. So Alex says he has to go buy a new router and I say ok because I really don't understand any of that. Just fix it and I'll be happy ;) So I'm waiting.....
I have new cell phone, a Blackberry Storm, its neat but a bit complicated. I manage to check all my email through it, but I don't find it amusing to blog on it- too time consuming!
On top of all this I'm reading a few books because I need to educate myself on a few topics. 1st there's the issue that it appears Angelina may have Sensory Processing Disorder (SPD) also known as Sensory Integration Dysfunction. Its a bit complicated, so I'm reading up on it to try to understand it and help Angelina with it. I'll explain more later.
I'm also reading up on taking care and training a puppy. I'm realizing I kind of jumped into it without truly knowing how much it would entail. At this point I feel like I'm failing Kobe at times because I don't know how to respond to some of his behaviors. And I feel like some of the things he does is because of lack of attention from me/ us. He loves digging, he has dug up a few plants in our backyard, and even made a pipe leak! When I take him out in the morning he LOVES to bark at the whole world and make it known that he is up. I'm sure my neighbors love that, since he gets the other dogs going too! Alex's favorite: he pees when he gets excited- a lot. And I mean he pees a lot not he gets excited a lot. The worst part is he does it mostly with Alex. Needless to say, my hubby is not amused! I've been told its called submissive urination...great- now I just have to get him to stop! Yes I watch the Dog Whisperer a lot!
Then there's our front yard and back yard that are so sad looking. Sad because it consisted mostly of dry grass, weeds and old faded mulch! Luckily my handy dandy brother works at Home Depot, so I bug him a lot. He has kindly gotten our sprinklers working on a timer. it still gets a little out of wack- the other day I'm pretty sure they were on for 2 hrs- not good! I've weeded and cleared out the old ugly mulch. Then I decided and I'd plant some pretty flowers. So of course I had to do research on that- didn't want them to die on me instantaneously. Well there's a lot to learn. Great! Any of you out there got green thumbs? This is all new to me! So far so good. Its not beautiful yet, but nothing has died on me yet (big achievement for me!) I thought my petunias were goners after the first day, but they have actually made it through. Better Homes & Gardens is my friend right now. And I'm actually going to take a free class at Home Depot. Yes I know I'm crazy- but I've only actually messed with the front yard right now ;)
Marcelina is good. Looking forward to summer as am I. She will be entering the GATE program next year, which I'm really proud of her for. She still wants to be a rock star. Eventually I will get her in some guitar lessons. She's a smart cookie, but at the same time little Ms Attitude. She's great with Angelina, but a firm believer that Girls Rock, Boys Stink. Unfortunately her brother is no exception. So often times she doesn't want to be bothered with him and is not the kindest to him. Sadly he'd probably do anything for her.
Alex will be entering Kinder in the fall. I'm really excited for him, I can't wait to see how much he excels. This little monkey can read and do math. He's caught on to it from listening to Marcelina. He is quick too! I actually a little worried about him, to the point that it makes me sad. Alex is a perfectionist. Everything he does must be neat, perfect, should not be messed with and he will take his time to finish it. If he is cutting and its not just right he wants nothing to do with it. If he builds a robot with Legos, he takes his time and then doesn't want it broken down for it to be put away. If he happens to color outside the lines, the paper is trash, and let me tell you he is very neat about his coloring. Recently his preschool teacher called me and I had to go pick him up from class. This is the first time this has ever happened. Alex is the type of boy that all the teachers love. He is sweet, loving and follows directions, especially in class. You just see that smile of his and know he is a sweetheart. Well lately this perfectionism of his is getting in the way. Two weeks ago his teacher mentioned he had gotten upset after a painting project they did, did not turn out the colors he had wanted it to be. Apparently they were learning about mixing colors. Anyhow, once it was messed up, he wanted nothing to do with it and wouldn't talk to the teachers. It took him a while to come out of his funk, and his teacher was surprised at how mad he had gotten. They never have to ask him twice to do something and this time it took quite a bit of coaxing to get him to move on. Last Friday, when i was called it was worse. Not only did he get mad about his project, he kicked and stomped at the floor, refused to talk to the teachers and then secluded himself from the class. He basically put himself in a time out and refused to participate in anything. His teacher called me to see if me talking on the phone to him would change anything- nope, silence on the other end. He finally said he was too tired. So I picked him up and brought him home. Since then, he has had a couple episodes of this anger. I mean he can be happy enjoying himself and in a split second he is furious to the point that he shuts down and won't talk. Today at least he used sign language with me. Its weird, he gets mad, either he crumples up what he is working on or throws it, then he like hollers out of frustration and then won't talk. And Alex by no means is a boy of no words. He can talk for hours non stop, and not nonsense either. It doesn't always happen, and so far he's been fine at school. His teacher has expressed being worried as she had never seen him act like this before. Don't get me wrong, Alex has had temper tantrums before, never at school, but they were "normal" in sense of being over not getting to do something. This behavior is because what he is doing isn't perfect. I'm worried that it might be either something medical or something I did or didn't do. I worry that I've jipped him out of time because of my worries for Angelina. My plan is to spend more one on one time with him and see if I can help him cope without the anger. Depending on how I see him, I'll make an appointment with our pediatrician. And then I wonder maybe I should just make appointment anyway? He is still being sweet and loving otherwise. He is caring and gentle with Angelina, and always trying to please Marcelina.
And finally Ms. Angelina. She is active and all over the place. Sometimes a bit hyper. Her walking is still not smooth (but that does not stop her) and she walks with a wide stance. She is a talker, except like I've mentioned before, its really hard to understand her. We are continuing with Speech Therapy, we still use sign language, and have actually started using PECS. With OT we have started using a pressure vest, to help calm her down a bit. Since she was sick with stomach issues last week, we haven't used it much, so I can't tell you if it helps.
Since this is already an extremely long post, I'll tell you more about SPD, PECs, her pressure vest and Angelina next time.
Sorry I didn't post in so long. Thank you for still checking up on us. I hope you all had a wonderful Mother's Day! AND PLEASE, IF YOU HAVE TIPS ON ANYTHING I POSTED TODAY....I WANT TO HEAR THEM! I promise to keep it current!

Angelina is 2 years old!

2009-03-08T21:56:00.000-07:00

Ok more like 2 years and 17 days. I can't believe how the time has flown! I am amazed at how well she is doing. Its still bittersweet to think of how difficult those first few months (1st year!) were and how well she is progressing.

What is Angelina up to these days?

She walks all over the place- even stops to jump or dance if the spirit moves her!

She eats well by mouth, even fights us for our food sometimes. Her favorites are pasta, beans, fruit, cheese and she LOOOVES her milk. Oh yes, she recently discovered pickles- yuck!

She sings- its so cute! I'll have to catch her on video one of these times.

She competes for attention with Marcelina and Alex (mainly Alex). To the point that she tries to babble louder than they talk (pleasant experience). Or if everyone is telling a story, she has one to tell too!

She doesn't say too many words clearly. The sad thing is that more and more she is trying to communicate verbally, but it is difficult to understand. But at least she is trying! She use to be extremely quiet-- not anymore! She can actually be pretty demanding-- wonder where she gets that from? She does try to say "I love you" it is so sweet to hear her!

She puckers up big for kisses. And leans into you for hugs.

She can't get enough of Kobe-- especially when the poor guy is trying to rest in his crate. Funny thing is that when I move her away so that he can have some peace-- he whimpers for her.

And her Daddy's favorite: she runs to the door to greet him with hugs and kisses when he gets home from work.

Angelina is so spunky and full of happy energy. We keep a busy schedule too. She still goes to physical therapy twice a week, speech therapy twice a week, occupational therapy once a week, and her early start teacher comes once a week. I'm contemplating putting her in a group class like My Gym, but I'm a bit nervous about exposing her so much to other kids. I recently put Alex in a class there and he LOVES it! I thought he deserved it because he comes with me and Angelina to therapy wishing he had therapy. I'm sure to him it just seems like playtime for her. Anyhow, when I take him to the My Gym class, some of the mom's have other little ones and Ms Angelina is so antisocial with them! She's better with the adults. If one of the other little girls tries to approach her, she either tries swatting them away or is practically growling at them. So maybe we need to work on her social skills a little.

As far as meds we are slowly decreasing how many she is on. Recently her Infectious Disease doctor took her off Septra. (prophylactic antibiotic) I thought about hyperventilating ;) He actually said if I wasn't comfortable with it we could wait to take her off. The thing is she's been on this med since she 1st came home (3 months old) from the hospital. Because of her DiGeorge syndrome she is likely to have a compromised immune system. Kids with DiGeorge can either have no thymus or a partial thymus which will affect how they fight infections. A way of measuring this is by measuring their Tcells. Angelina's have always been on the low side, but the low normal side. If you are on an antibiotic too long, it can actually stop working for you. So for now, we will discontinue using it. Hopefully she does well without it and we won't have to go back on it.

She is still on post-op meds, Lasix and Aldactone. They are suppose to be temporary, so that's a relief. I'm hoping to stop her Reglan soon, since she hasn't had reflux symptoms in a long time. That just leaves her calcium glubionate. Once she's off the Lasix, we can recheck her calcium levels and decide whether she needs to be on it anymore or whether it needs to be adjusted. That one makes me a little nervous too. Angelina had seizures when she was 2 days old because her calcium level was so low (again because of the DiGeorge).

We did see her pediatrician last week, and she is very happy with how Angelina is doing. Our little monkey is measuring 31 inches and weighs 23.6 pounds! I'm pretty sure she was due for poopy diaper though! So maybe she's right at 23 pounds ;0)

Angelina has taken her first big tumble! She thought it would be good idea to run down our driveway. She got a black eye from jumping on the bed!We love getting churros (and being goofy) at Disneyland!Angelina truly enjoyed her cake. She actually dug a hole on the other side of it!Are you sure I'm suppose to hit it mom?Kobe- hoping he gets a go at the pinata!Trying to get 10 kids in a picture is NOT easy!Playing with some of her new toys!

Talking and walking!

That would be I LOVE YOU!

Thanks for checking on us!

Hope everyone is doing well!

A new addition to the family

2009-02-23T09:59:00.000-08:00

We have a new addition to our family......

...his name is Kobe We found him at the shelter, looking a little sad,

Marcelina is the first to hold him at the shelter before we bring him home.

Much better....holding a clean Kobe! Kobe & his leopard, we got it in hopes he'd cuddle with it & not miss his brothers and sisters too much :(

He also likes toys that don't belong to him!

Angelina can't get enough of him.....

Poor guy, sometimes I have to rescue him from her!

Except for all the pink, I'm pretty sure he is feeling right at home!

The Mom Song. [Lyrics on Screen+Download]

2009-02-17T16:25:00.001-08:00

This is hilarious!

Boogery weekend!

2009-02-08T21:22:00.000-08:00

So it figures that as soon as I go back to work Angelina comes down with the sniffles and cough. That was last Friday. Luckily daddy did a good job with the Tylenol and humdifier. She kept her sats up, and she mostly coughed at night. Now its just the occasional stuffy nose. Marcelina had had a bad cough but thats pretty much gone away. Lil Alex you can tell doesn't feel super good, but he doesn't complain. He does though get more cuddly. What i don't get is how the stuffiness doesn't keep him from talking??? How can a little boy talk so much? I don't get it. My hubby came down with it too, but he doesn't complain much (anymore), his head cold also seems to be resolving.

This Friday I finally came down with a fever and was not feeling well at all. I ended up not working my 2 usual days, and staying home with all the sick monkies ;)

Some pictures and videos from the last few weeks:

I don't get it- how & why does so much food end up on the floor???

Look Mommy, what a cute little girl...

She kind of looks like me...

It is me!This is Angelina's "Frankenstein" walk!After her cardiology appointment we always go say hi to the fishies

Angelina was so excited to see them!

Listen to her get all excited:

Is my flower too small? ;)Before I went back to work Alex wanted us to go out and eat...the kids are usually well behaved at restaurants but its a bit tiring for me because for some reason they seem to say "Mom, Mommy" a whole lot more! Anyhow I was tired and not too crazy about going. I'm glad we did, we had a good time and kids cracked me up!

My Cute, silly boys:

Crazy Girls:

Ok so maybe I had a little too much fun with this!

***************

Watch Angelina get all crazy on th trampoline- she loves it!

Oh and for you mommies working on getting the kids to stand and weight bare, check these out:

http://www.chinadirectstore.com/squeaky_shoes.htm They don't have much support because they are little cheapy canvas shoes, but they sure make her want to stomp around!

By the way, check out my monsters @http://www.visitmommyscorner.blogspot.com/ , maybe some of you can give me some tips on my converstation with my daughter...

2009-01-26T15:33:00.000-08:00

Angelina is spunky as ever. She's all over the place, and following requests (commands doesn't sound nice:) quite well. She is using her voice a lot more, but its still hard to understand her verbally, otherwise she does let her wishes known. I can't believe we are getting so close to her Birthday already. 2 years old, seriously? When did that happen. Kathy, Isaac's birthday is coming up too isn't it? And Orion too!

Sigh... on Saturday I go back to work after having a month off. It flew but I am so glad, that most of the time was spent at follow up appointments and not in the hospital! I'm a little worried because Marcelina has been home with a fever one day and a bad cough since. Alex just started to cough today. I'm praying Angelina won't come down with it. It's hard enough keeping them away from each other, but I still have to take care of all my babies, so hopefully I don't spread it all around! Hmmm, maybe I should go get more hand sanitizer!

My laptop is also sick, so Alex my hubby is trying to cure it! hopefully I can post some more pics soon. On a happy note: does anybody feel like winning something? Check out these adorable signs!

Check out http://ashnicole1129.blogspot.com/ to get a chance at the cute give away!

Pray for little Angel David's family

2009-01-21T01:22:00.000-08:00

I'm not sure where to start, except to say how horrible I feel about not being a better support person and friend. This post is not about Angelina or about myself. I stayed up last night, catching up on blogs that I hadn't visited in a while. When I got to Pray for Baby David, I was shocked to find out, that this family had been through so much in the past 9 days. February 3rd was suppose to be their big day. Instead baby David was born January 12th via emergency c-section. He was here for 3 short days, then went on to be an Angel. This mom, Nikki reached out to so many of us fellow CHD mommies, trying to prepare herself as best she could. I admired Nikki for doing this, for seeking out all the stories good and bad.

And while I was caught up in my own story, I am glad there was so many other families there for Nikki and her family. There is not always a happy ending. I pray each day brings them some healing. Please keep this family in your prayers.

Just a few pictures...

2009-01-19T16:01:00.000-08:00

Starting the day off with some milk and some major BED HEAD!

Its easier to clean Angelina up at the sink after meals, but with the high doses of Lasix she tries drinking water whenver she can!

By the way, notice the sunny day? Its been in the 80s out here, if you can tell I live in Southern California ;)

Angelina's facial expressions are a crack up. I guess they make up for how quiet she is sometimes.

Angelina after having pasta Auntie Jessi made for dinner, it was ALL over her face!

Exploring in the kitchen...

Told you it was warm! We even got out to the park.
Proud Marcelina pushing her little sister on the swing.

And we can't ignore the lovely tricks her brother teaches her!

Hope everyone is doing well!

Did she really have heart surgery??

2009-01-15T23:42:00.000-08:00

Hello everyone, I know its been a while, but lately it seems like I fall asleep at the same time as my monkeys. So my quiet blogging time has been ZZZZZZZ time!
Keeping our new home clean, organized and unpacked keeps me busy. But I believe who keeps me most on my toes right now is Angelina. Honestly, this little girl acts like she never had surgery! She is all over the place! The new house is a tri-level, so it doesn't really have 3 stories, but 3 short sets of steps, ranging from 3 to 9 steps. These currently present no obstacle to Angelina. She goes up and down without a problem...no panting, no turning blue, no problem. If I'm in the kitchen she's following me around there. So we have designated a low drawer with things she can take in and out. If I'm outside watering, she's right out there with me, wanting to get wet and or dirty. She is eating more, talking more, and just all around more energetic.
She also has no attachments! As in no oxygen and no more drain- Woo Hoo!
Still on lots of meds, but hopefully these will decrease some on Monday after her Cardiology appointment. That Lasix has got her peeing like crazy! No fun when dealing with cloth diapers!
We have an Echo scheduled tomorrow, so hopefully only good news with that. I know I promised pictures but I haven't located my card reader...
Marcelina and Alex have adapted well to the new house. They got a big playroom, which also means Mommy got a living room with NO TOYS! They seem to think this warm weather is enough to go in the pool- no way, it's not even heated!
Well, thanks for in checking on us, hope everyone is enjoying the new year!

Doing Well!

2009-01-05T22:36:00.000-08:00

Finally, I can get to the Internet! I can't believe Verizon, we won't have a land line or Internet until Jan 12th! That is just crazy! Don't they know blogging is my therapy??? Now that I think of it, we probably should have demanded a land line sooner considering Angelina's needs. Good thing we have good reception on our cell phones. So I'm here at my sister's house, Auntie Betsy, playing on her computer.
Thanks Auntie Sasa & Auntie Betsy for keeping the blog current. I just got to read all the wonderful comments everyone has left, they made me get teary eyed.
Angelina is actually doing wonderful. I'd say she was probably about 98% herself today. Calling for me, demanding attention, playful, walking around the furniture. I think I grimace more than she does. I can't believe she's barely going to be a week out of her surgery and she's acting all honky-dory! She is truly amazing. Of course I think Dr. Bailey and all the nurses are amazing too!
Angelina had her post op appointment today. The drain needs to stay in for at least another week. Which is fine with me, I'd rather do that than have to come back in to get it put back in. Her sats on room air were 91% ! This is great for Angelina, before surgery she was barely being able to keep herself in the 80s, usually running 75-78% the last month. She's still on oxygen for now, just 1/2 a liter which puts her up to 99%.
She's not eating too great, but thankfully we still have her G-tube, so I've been supplementing with Pediasure. Slowly though her appetite is coming back.
So here's a few pics, taken with my phone camera. I actually just found my camera, so I'll have better pics soon.

On Jan 1st getting ready to go home. Her paci, is definitely her comfort zone. She would hide behind it.

All set to go home!

Friday, Jan 2nd, waking up at home. She was standing herself up since the night she got home! Crazy girl! Doesn't that hurt?

Jan 2nd, just cruising around

Jan 3rd, after a nice bath- time for a massage!

Thank you all for all your prayers and positive thoughts. Thank you to all my family who is always so supportive. I don't think I could make it without you! Thank you to everyone who has extended an act of kindness towards us.

quick Update

2009-01-04T22:59:00.000-08:00

Mami is still without internet, so I thought I would give you all a quick update. I got to spend the weekend with angelina. Wow! She is soo amazing. It is hard to keep her still. She definitely is still feeling the surgery she had only days ago, but she is playing and enjoying her baby signing time videos. This Auntie is super happy she has learned the sign for "aunt", even though I don't think she has figured out what it means, because she has FOUR aunties! That can get pretty confusing.

We had a family get together today and she was glad to have all the hustle and bustle that a get together brings...especially yummy food. Thanks Auntie Jessie!

Auntie Sasa

on the move

2008-12-31T15:22:00.001-08:00

Not happy about walking!

HOME SOON!

2008-12-31T11:31:00.000-08:00

a text from Mommy:
OMG! she'll probably come home 2morrow!! on some oxygen, but she'll come hm! She's mad @ me though :( she wont look @ me!

Day 1 winding down & doing Good!

2008-12-30T21:37:00.000-08:00

This is Auntie Betsy posting for Ana! Angelina is a trooper! Although she was very restless during the day and a bit loopy she looked amazing!

She did well with her nurse so that was comforting. By tonight she is off all drips, drinking apple juice and watching Baby Signing Time!

Tomorrow is a big day for Angelina, Ana and the Nurses will be working with her to get her to walk! Please send your well wishes and prayers to them for strength and good health!

We love you Angelina!

Looking beautiful!

2008-12-30T15:44:00.000-08:00

Auntie Sasa here. Baby girl is looking pretty fabulous. She is pink and her insision is very clean. I will try to post photos as soon as I can get to a computer. She has awoken and asks for Mama. I hope to get a minute to see her and take some camera phone pictures. Thank you for all of your prayers! X0X0, Auntie Sasa.

Doing Well

2008-12-30T11:59:00.000-08:00

She's been off the bypass machine. Doing well, finishing up. Hoping to see her soon!

Surgery Started

2008-12-30T08:28:00.000-08:00

Ok surgery started about 10 min ago. They took her back pretty fast after we got here.I was not ready for them to take her! :( She was nice and tipsy though so she went pretty willingly. Thank goodness for versed! Please keep those prayers coming!

Surgery Tomorrow

2008-12-29T21:08:00.000-08:00

Hi Everyone, Auntie Sasa here. I am filling in as blog poster because the Adame's are internet deficient due to the move.

Angelina has been doing great, attempting to walk more and more. Lil Alex and Marcelina are getting used to the new house and enjoying their giant play room. Amidst all this change is surgery day. Angelina's surgery at . So please send all of your good thoughts and prayers out during this time. I will try to keep you posted from the hospital.
--S

Craziness

2008-12-23T17:15:00.000-08:00

Still haven't found my camera! :( Not good especially since the pics I hadn't downloaded were suppose to go on Christmas cards!!! I suppose I will find it soon since we are in the middle of moving. Yes I said moving! Crazy yes I know. We had a good opportunity come up and we are going to be renting a house from a family friend of Alex's back from his junior high days. We rent a townhome in a really nice area right now, but with nice comes a high price. The house is much bigger, going from 1600 sq. ft to 2300 sq. feet and saving.....$800 a month!!!! And its in a very nice area. Its close to where we live now, so we are just going back and forth moving stuff. We just decided to move on Sunday, because they wanted to rent the house right away. We are having to break the lease here, we are hoping they will be lenient with us! It's amazing how things work, Alex happened to meet up with this friend from way back when at a job fair.

My hope is that we can be out of here by Sunday. Of course Alex worked this week, so its mostly been my sis Jessi and I going back and forth. Luckily Marcelina & Alex are visiting with their Nana & Grampi and playing in the snow. Meanwhile Angelina 's been following me back and forth and going to appointments in between.

So I'm sorry there was no cards, but I truly wish you all a very Merry Christmas!

All I've got is a few phone camera pics:

My little elf distracted with TV for just a few minutes! Yes thats a matress behind her- told you we were moving!

Enjoying some of Mommy's birthday chocolate.

Happy Holidays!

Thanks for the support!

2008-12-20T03:54:00.000-08:00

First I wanted to say thank you for all the support that our family has gotten from our families and friends at home, from the wonderful nurses and friends I work with, and from our blogging families. One way or another you have provided us (mainly me) with hope, support, love and encouragement. Thank you from the bottom of my heart.

Seems like we've had lots going on lately. We had our annual trip to Big Bear last week, which was really nice. Of course the snow didn't really start until the Saturday right before we came back home, but the kids still had a great time. I have pictures that I'll post as soon as I find my camera! I love this trip because its the one time a year my family (parents & siblings) and Alex's parents and sister all get together and hang out for almost a week. Its beautiful and peaceful (well if you listen beyond the kids!) Last year we didn't go because we were still anxious about doing trips like that with Angelina. Alex and I worried about going this year because of our financial situation, but at the same time, wanted to give kids good quality family time before the chaos of Angelina's surgery starts. I'm glad we went.

Alex has still been looking for work, its been a tough quest. It has been alleviated at least temporarily as his old job has called saying they needed some help. Its temporary, not sure for how long, but its better than nothing. Having been unemployed for 2 months was tough, we were cutting it close before that, and this really put us behind. I will barely be going today to try to get some small gifts for the kids. Hopefully it won't be totally insane!

I was getting worried about being able to take time off from work for Angelina's surgery. I applied for a leave of absence and I just about flipped out when it was denied. Well it turns out that I don't qualify because I haven't been back to work for a year yet. After talking to Human Resources they informed me I might have one more option. I can apply for State FMLA and at least this way my benefits would be protected. Well thats definitely a good thing since I can obviously not do without health insurance! So as I was worried about what I was going to do for income, my unit at work took us under their wing. These caring Labor and Delivery nurses that I work with have started donating their paid time off to me. Wow, ladies you can't believe how grateful I am to you. There is this heaviness that keeps building up in my own heart with worries. Thank you for alleviating a part of that. Seriously, thank you sooooo much for helping not fall apart.

Ok so you may be wondering, HOW IS ANGELINA DOING? She's good! Spunky as ever. Making more and more attempts to walk. Attempting to talk more and more- although we can't always understand her. We are seeing a new Speech Therapist, who just seems wonderful. When I had to take inventory of words she knows, I was surprised that she says 8 words and signs about 30 different words! She has been free of colds up until now. I'm a bit worried because Alex & Marcelina started with the sniffles and a cough 2 days ago! We will do our best to keep her healthy.

Thanks for checking on us!

Three more weeks!

2008-12-09T07:03:00.000-08:00

It is exactly 3 weeks until Angelina's Fontan surgery. Yes my anxiety is slowly starting to creep up. Thoughts like what will she think, what will she feel when she first wakes up from surgery? Betrayal? Obviously pain, but will she look at me and wonder why I let this happen? Will that pain show straight through her eyes? How will she do? I can't even picture her intubated at this point. She's my happy little girl, who loves to get all riled up and crazy. Will she look at me like I'm crazy when we first try to get her to walk post operatively? How I wish I could take all this burden and pain upon myself.

I do try to think positive, I don't think about it going wrong. I just worry about how tough it will be on her. She's so unsuspecting. She's busy trying to walk to me whenever she can. She's chunked up, weighing 22 whole pounds and measuring 30 inches! She's eating well, but just to make sure she has enough reserve for her surgery, we started giving her GT boluses at night per her GI doc.

She's trying to talk more. She actually tries to say Marcelina! And of course she's doing good with her signing.

We went to the Craniofacial clinic yesterday. I always find those appointments to be a bit...annoying? I like the staff, I know they mean well and are only trying to help. But I leave feeling like, why did I just come pay $20 so you can tell me she's delayed? Honestly, pay me $20 and I can tell you she is behind....but she has also come a long way. She's smart and happy, loving and playful. They do acknowledge she's making progress. Yet part of me finds it pointless to sit there and wait 2 hours to be seen and then have her evaluated once she's tired & fussy. I wish there was a different way of doing these evaluations.

Here she is cracking up while her brother tries to keep her entertained at the doctors office

Silly brother with Angelina's pants on his head pretending to be a puppy for Angelina.

Thanks for checking in on us. Have a Happy Tuesday!

A nice Thanksgiving

2008-11-28T02:59:00.000-08:00

Hope you all a had a great Thanksgiving. We had such a nice dinner thanks to Auntie Sa-sa. She made a beautiful and yummy turkey! We ate lots, then passed out....seriously, then had dessert. It was yummy and relaxing.

Our blessings:Is it ready yet Auntie Sa-sa?Time to eat!

Hanging out with Nana

The Adame Girls

Marcelina's Birthday

2008-11-28T02:48:00.001-08:00

I must back track a few days and tell you Marcelina my oldest had a birthday. She turned 7 on November 25th. I must say her birthday was a bit more memorable in that I started having labor pains the day of Thanksgiving. I wasn't due until December 20th- a day after my birthday! Anyhow I did a lot good breathing because there was no way I was going to miss Thanksgiving dinner! I remember they were intense at times bringing tears to my eyes. But after dinner...the pains subsided! By the time I did go into the hospital that Sunday I was dilated to 9! Needless to say, I had her soon after.So here we are 7 years later, Marcelina has turned out to be my girly girl, smart, outgoing, loves to dance and sing. She use to want to be a nurse, a teacher and a policewoman. Now she wants to be a Rock Star! Thanks Hannah Montana! Well she has a few years to outgrow this! For now she can have fun dressing up!For the first time in her 7 years we did not have a birthday party for her. We had to keep it low-budget, which honestly is hard for me. We did manage to do stuff she loved though. We took her to Disneyland (thanks Nana & Grandpi for those annual passports!) We split up for a little bit. Daddy and Alex hung out at Disney while us girls hung out. Marcelina got dolled up at Club Libby Lu in Downtown Disney. Trust me she was in girly-girl heaven! She's funny she's missing 3 teeth right now, and is unsure of how to smile at this point. Then we all got back together and enjoyed our day at Disneyland. Initially Marcelina wasn't being very nice to her brother, because she wanted to do her girly-girl thing, but the by the end of the night they were best buddies again.

Getting Dolled up @ Club Libby Lu

2008-11-28T02:45:00.001-08:00

Happy Thanksgiving

2008-11-27T15:44:00.000-08:00

Our family would like to wish all of you a very Happy Thanksgiving! We have so much to be grateful for. Our health, our family and friends. Thank you to all of you who have been so loving and supportive. Mostly we are grateful to HIM for all the blessings he has given us, and for helping me stay strong!
I'd also like to say a little thank you to my blogging family....you help me stay sane.

XOXOXOs
The Adame Family

She's a Maniac, Maniac!

2008-11-23T01:34:00.000-08:00

Here is our little girl paying homage to Flashdance!

As u can see she is pretty active. The laughter in the background is her partner in crime Aunti Jesse!

Our little model

2008-11-17T20:52:00.000-08:00

Angelina was enjoying a little photo shoot tonight...

Peek a boo!

She didn't even mind the hat!

Don't you love her cute little pants? How lucky is she to get custom longie pants made! We are getting ready for cold days (hopefully soon!) These wool knitted pants are suppose to work perfect with her cloth diaper. Angelina is just little Ms. Thing! She doesn't wear disposable diapers because she's allergic to them. So she gets to wear soft, cute cloth diapers AND gets pants made just for her! Thanks Terri, you have been so wonderful to make these for Angelina!

Finally this is my favorite part of the night...quiet time! When everyone is in bed, even if they are pretending to be asleep!

So Close!

2008-11-14T14:50:00.000-08:00

She's almost there! She's definitely trying! We are well. Lil Alex got a little sick with a cough & congestion. It's almost gone, but he did manage to give Angelina the sniffles. So far its not bad at all. Thanks for checking in on us!

Cracking up

2008-11-04T14:17:00.000-08:00

I just love the way she laughs, its so carefree!

Still working on the walking. She's 20 months now, it would be nice to have her running around for her 2nd birthday. Amazingly we are staying cootie free....I'm praying we all stay that way!

56 more days.......

Happy Halloween

2008-11-01T00:36:00.000-07:00

Check out our costumes!

All set to go Trick or Treating! Look at brother being sweet and loving...big sis is not amused by it!

Lets try out some super hero moves!

Enjoying some Halloween candy. Hope you all had a Happy Halloween!

Cute Longies!

2008-10-30T00:49:00.000-07:00

Aren't these the cutest knitted pants (Longies)? Thanks Terri for you hard work! They seem so comfy.

I'm a little tired....

But not too tired to talk on the phone.

Mommy it's for you!

Before you get excited, no she's not standing on her own. She does it for a few seconds and then leans back on the couch. But she's trying!

Alex had fun today working on his Mr. Potato Head Pumpkin. He's so serious about his work.

Very Serious!

The finished Product!

Marcelina thought she'd just be goofy for the camera!

2008-10-27T21:49:00.000-07:00

So we saw Dr. Bailey today. He is Angelina's CT surgeon. Not only is he well known in his field (performed Baby Fae's baboon heart transplant 26 years ago yesterday) but he must be one of the kindest surgeons I know. He never down plays my questions, he gives me the honest truth without sugar-coating it. Yet I feel reassured by him. I've heard nurses say that no matter how well or how much he does and succeeds, he doesn't take credit for it. Instead he is thankful that his hands are tools for HIM. He is humble through it all and gives all credit to the Lord.
He is never rushed when he sees us. He always has a special twinkle in his eyes. He manages to sweet talk Angelina, reassure me, and chat with little Alex. I am so greatful that we have him.
Like I had mentioned before, our date is set for December 30th. Angelina is sooooo close to walking. She wants us to hold her hands and walk her everywhere. Once you get her started you can't get her to sit down. I am so proud of her.
I am almost afraid to say we are staying healthy right now. We've all gotten our flu shots and Angelina's started her synergis shots. Little Alex has been fighting a cold, he's such a trooper, he swears he's not sick.
My last bit of news is bad. My hubby got laid off a little over a week and a half ago. We are trying to stay positive. So while he looks for something new, I will be picking up extra shifts at work. Thank goodness there's overtime available at work. It does bum me out though. 1st because the economy is so bad right now, that I do hope he finds something soon. 2nd, I don't want to be too tired for my babies. We have our routine, and while I may complain about the running around...it's what I do. I'm the Mommy, I take care of my monsters.
So thanks for checking in on us.... and keep us in your prayers.

Cruising around....almost there!

2008-10-21T16:11:00.000-07:00

Angelina is all over the place! She gets brave and tries to stand by herself. Can't wait for those first unassisted steps! By they way our surgery date is December 30th.

Making Mommy laugh!

2008-10-21T16:01:00.000-07:00

So glad my babies can give me a good chuckle!

Mommy's Corner

2008-10-13T08:28:00.000-07:00

Since this blog is mostly about Angelina, VCFS & CHD, I've started a new one. You know just about everyday mommy stuff! So please visit when you can! Yes I will be bragging (and possibly venting) more about my 2 other monsters!

Feeling so much better!

2008-10-10T00:17:00.000-07:00

I think Angelina is finally feeling 100% herself again. She is playful, and flashing her silly smile all the time. I noticed she was still getting a little bit flushed Wednesday night, but that was the last of it! Hope you all have a wonderful weekend!

Just got home today...

2008-10-07T16:08:00.000-07:00

Yes today not yesterday like was planned. The heart cath went well, her pressures were good and she's ready for her Fontan. As usual she came out very agitated from the anesthesia. So it was a bit difficult to keep her flat and calm. After a while she did calm down and we both fell asleep.

Waiting in the lobby to get called in.

Ok we are on the gurney!

Let me double check these consents!

So after our nap, I notice Angelina's face is starting to get flushed, she's feeling warm and she's getting agitated again. Her temperature was ok but her face started to get more beet red and she's more upset. By this point she is so upset that now she's turning blue and her sats start dropping. And you know that the last thing an agitated baby wants is a oxygen mask on. And if this wasn't enough her face starts really puffing up! Her poor eyes puffed up and for some reason her left side is worse than her right. So both the anesthesiologist and the cardiologist get called back to her bedside. By this time the redness spreads to her arms and her left leg. She was cath'd in her right groin and her right foot which was previously warm is now cool. Am I worried? Just a bit!!!
Its decided it has nothing to do with her circulation and its probably an allergic reaction to something. Her lungs sound clear and the chest Xray looks good. So finally a while after getting some steroids and benadryl she goes to sleep and the redness starts to fade. And now she's bought herself an overnight stay.

The puffiness has gone way down in the above pictures and she's not red anymore. As you can tell she is NOT a happy camper!

The pictures below were from this morning. She was feeling better and ready for breakfast.

She had one more episode last night of getting flushed, sounding raspy and getting agitated. They gave her benadryl and it seemed to help. Luckily they let us go home. She occasionally sounds raspy but I think its also from being intubated. We'll keep giving her benadryl for tonight and hope she is even better tomorrow. At least her appetite is good and she did flash a few smiles at the doctors and nurses.
So now the next step is to see an Allergist. She's very sensitive to things, so I am interested in seeing this specialist.
Thanks for checking on us!

Friday is share day....

2008-10-06T03:12:00.000-07:00

Angelina starts off friendly, patting her cousin on the back...

Wait this is my pony!

And this is my mommy (even if she is disheveled!)

Not looking too happy about share day!

I love that Angelina can climb on her pony all by herself. She bounces on it and loves making the music go off....still doesn't like to share though!

Here's Angelina communicating with Mommy...

I'm hungry! She loves cheerios.

Have you seen her silly new smile? She has 4 teeth and 2 molars coming out at the same time.

Heart Cath

Today Angelina has her heart cath. We check in at 8:30, and her cath is scheduled for 10:30. Angelina usually comes out of general anesthesia very agitated and unhappy. So please send your prayers and happy thoughts our way!

Speech Therapy please!

2008-09-29T22:37:00.000-07:00

So I'm a little annoyed. As you may, or may not know speech delays & impairments are a big issue for VCFS kids. I've been anxious for Angelina to get speech therapy started and was excited when her Dr. wrote a prescription for her to get it x3 a week.
So first I approached Inland Regional (California's early start program) and guess what? They have no money to authorize new therapies this year. They already provide us with physical therapy and occupational therapy and a teacher that comes to the house....so I should not be too bitter. But I'm not asking for something just for fun. Angelina truly needs it.

Next we figure ok we'll go through our health insurance. Guess what? They only pay for 14 sessions a year! That's crazy! Going 3 times a week she'll be done in a little over a month. Sure we are almost done with the year but it will be the same case come January. I know I could maybe space them out a little. Even if we went twice a week it still wouldn't even last us 2 months.

I'm going to check back with Inland Regional....maybe they found some money. If that doesn't work I'll have to find a way to appeal it.

On a good note, Angelina and I are feeling much better. I'm hardly coughing and Angelina is just a little snotty.

I wanted to share this cute video. On Friday mornings we babysit my nephew for just a few hours in the morning. Angelina thought she'd be nice and share her pacifier....then couldn't get it back. She even goes to her big brother for help but he is too busy being goofy. By the way this is from 2 weeks ago...we weren't sharing cooties!

Oh yes and today is our wedding anniversary...8 years! Love ya Babe!

Weren't we cute?

Please also say a little prayer for lil Orion who just had the Glenn yesterday!

Still Sick

2008-09-26T15:26:00.000-07:00

I might of spoken too soon last time when I said Angelina wasn't having fevers! That same day she woke up from napping with a fever and miserable! The type of miserable where they cry because they want you to pick them up and once you do, they still cry because they just can't get comfortable? In the morning she wakes up stuffed up even with the humidifier. See how she has to breathe through her mouth? She's actually even done some extra napping. But just like Mommy, never too sick for chocolate cake!

Yuck!

2008-09-24T02:24:00.000-07:00

We are sick! At least Angelina and I are....hopefully no one else will get sick. Because then it just turns into a vicious cycle!
Being sick is one of my big worries with Angelina's surgery coming up. There's too many of us too keep healthy. Lil Alex likes to bring home cooties from school all the time. On Monday we got a letter from his preschool, saying he might have been exposed to Chicken Pox! Seriously?!! Should I just keep everyone home until next year....no, that might drive Momma batty!
Sadly I brought the cooties home this time. I think I caught it at work. It started on Sunday, with a bit of a sore throat....now we are into full blown bronchitis. Unfortunately the kids aren't buying into "Family Nap Time." So I have to wait for hubby to get home!
Angelina has a very mild cough and some congestion requiring a humidifier @ night. No fevers at this time. Luckily she's sleeping through the night without coughing....unlike Mommy!
I'm worried because I was told that if she was to get an upper respiratory infection/RSV her pulmonary pressures could be elevated for a month and they would have to delay surgery. Not sure if this means we have to post pone the heart cath scheduled for Oct 6th. Guess I better call and check!

Why We Love Baby Signing Time

2008-09-22T05:22:00.000-07:00

You mean besides giving me a chance to win the newest Baby Signing Time Videos?

1. LOVE to hear Angelina's giggle of excitement when she realizes its about to start

2. All 3 kids are entertained!

3. They are educational AND entertaining

4. LOVE the music! Everyone at home has been caught humming the songs @ one point or another!

5. Whether Angelina has speech delay/ impairment or not...she can still communicate with us!

6. Hopkins....Angelina thinks he's so funny!

7. Have you seen Angelina dance to this music?

8. Rachel's voice...love her singing AND signing!

So if you are looking for some great educational DVDs for your kids Signing Time is a great place to start! Check out the previews of the newest Baby Signing Time Videos:

Can't wait to have Angelina dancing to these!

......It's been a while

2008-09-19T01:26:00.000-07:00

We've been busy, getting use to every body's different schedule. Squeezing appointments here and there. Every body's got somewhere to go, all at different times of course, and it takes some careful planning!

Marcelina has settled into school nicely. We are actually so proud of her today because she's making herself stand out as an excellent student! Each month they have to learn a new poem and recite it in front of the class. They get full points only if they add a bit of their own pizazz to it. It was due next week, but Marcelina informed her teacher she was ready to go this week. She recited it yesterday, adding her own flair with props. Her teacher was so impressed, not only for being ready, but for going 1st, that she asked her if she could perform for the other 2 2nd grade classes, so they could have an example. So today my brave little girl recited her poem to 2 different classes. She said she was a little nervous, but didn't forget her words! Yes I'm a proud Mommy! My first baby is growing up so quickly. A little too much at times because the eye rolling and scoffing has begun!

Lil Alex, he's a smart monkey too! Too much for his own good, because he always has something to say. This child is constantly talking! He's reading short words, and constantly stopping to try and read signs. He even answered while Marcelina was practicing her math facts the other day! Maybe it was coincidence....nah! As much as he is my cute little guy, he is also my monster...lots of attitude lately! In part I blame it on the constant running around. Seems like as soon as he's settled into his quiet playing- its time to run off some where else. I agree it's not fair.

Miss Angelina is also a busy body. She won't sit still for a minute! It's hard for me to get a picture of her like this. She's cruising all over the place. She's got physical therapy twice a week, occupational therapy once a week and her teacher that comes and sees her every week. AND we are trying to get her speech therapy! Angelina has figured out that she can complain and resist therapy when its not going her way. For the most part she's cooperative, she just prefers some activities such as the swing, the trampoline and the slide best over others.

We have her heart cath scheduled for October 6th. Yikes! Yes it still makes my stomach turn. After this we'll see Dr. Bailey (Cardiothoracic Surgeon) to set the date for her Fontan. (more stomach turning). The plan is to do the surgery in late December...yuck! Her heart has grown appropriately and thank goodness her heart function is good. The hope is that she will be walking by the time her surgery comes around. With the Fontan kids are more at risk for pleural effusions, which means chest tubes! If she's walking it will definitely be more beneficial to her recovery. Having worked on the unit right next door to the pediatric cardiac unit, I recall seeing these toddlers crying the whole time they are being walked down the hall with drains in tow. (ugh there goes my stomach again!)

So why in December? 1st: the walking, 2nd: kids will be on break, 3rd I will definitely have more help available to me during this time. It's scary because yes it's right during RSV season. My plan is to hopefully do it immediately after Christmas. I just can't bare to do it before! Too many what ifs, and I really want my kids (AND my family) to enjoy their holidays. So we'll see, for now, we'll do our best to stay healthy and put on some weight (not me, just Angelina!)

She Loves Dancing! Check out some of our adventures in the picture slides below!

2008-09-19T01:16:00.001-07:00

Some Peace

2008-09-19T00:46:00.001-07:00

Helping out with Physical Therapy

2008-09-19T00:44:00.001-07:00

My New Markers!

2008-09-19T00:43:00.001-07:00

Sorry!

2008-09-11T02:30:00.000-07:00

I'm so sorry I left off with a stressed out post and then didn't post for a week! I know I worry about other families when they don't post for a while.
I've been a bit stressed, anxious and I suppose depressed. I think the highest on my list is anxious. When we first came into this CHD world I developed tics (not the bugs!) All of a sudden my hands would get sweaty for no reason, I would feel panicky, even if Angelina was OK in my arms. I'd play with my cell phone flipping it open and shut continuously to the point that people would sometimes grab it out of my hand! I didn't like feeling this way, because I don't tend to be a nervous or anxious person. I don't like feeling like I'm not in control of myself. This past weekend that's how I felt. I could feel my hands getting sweaty, and at times I could not keep them still. When I'm like this, crying comes easily too. So I didn't post because I didn't even know where to start! That and I truly was busy.
Today I am better, I feel more calm and in control. So what are you asking set me off? Talk of scheduling her next surgery AND I accidentally read a blog of a little one who became an Angel a few days post op. There were pictures of her pre-surgery...she looked like a normal healthy toddler. The first few posts after the surgery were of relief, and that she was doing well. Then I think 4 days later she was gone.
Sadly, that is the hard cold reality of this world. Anything can happen, and sometimes we don't know why. Kids can do excellent one surgery and not so great the next. There are no guarantees.
I apologize to you Heart Mommas reading this. I hope you are not reading this at the start of your day....I don't mean to be such a downer! I'm sure I am just having "a moment." I am OK. I am an optimistic Mami, and a positive person. Its just this CHD world catches you off guard. People can say all the optimistic cliches that are out there, or have "comforting" words for you, but they'll never know what happens to a Mommas heart & soul when you are given news that your child has major health problems.
Angelina is doing well and her echo did look good. But it is time for her third and last heart surgery. They want to give her a little bit more time before doing it since it would benefit her to be walking. So no pressure Baby Girl....but can you be walking by December?
Thanks for checking in on us, there's more to tell, but enough rambling for now!

Fontan Time?

2008-09-03T08:46:00.000-07:00

So I woke up with a stomach ache this morning...could it be the scheduled echo Angelina has tomorrow? Normally, this doesn't raise alarm in me, not to this degree anyhow. We have been lucky that Angelina's heart has done well. But you see Angelina is 18 months old now. At our hospital the Fontan procedure is done between 18-24 months of age. More than likely her heart cath will be scheduled after we see her cardiologist tomorrow. As long as her pressures are good, then the next step is scheduling her surgery! I keep saying I'd rather have it done before we get into RSV season....but that's so soon.
It's been a year since her last surgery. While she is still not really verbal, she can definitely sign or express what she does and doesn't want. I can just see her shaking her hands at me telling me "all done!"
This is the look we got a year ago on her second day post-op. I can only imagine what she'll do this time.
So here we go, one more heart surgery. At least this is suppose to be her last.

Scrapbook...anyone?

2008-08-26T02:04:00.001-07:00

Used these before? Aren't they cute? They are called epoxy letters. They feel like hard plastic and look like a bubble over the letters. They range in color and size.
Well guess what little Ms Angelina pooped out today? Yup, a nice light green E, about the size of a dime! No idea where she found it, since Mommy hasn't scrapbooked since before she was born. Marcelina does have a nice collection of scrapbooking stickers though.....Can you imagine choking on that? My poor baby, no wonder she couldn't breathe!!! Thank goodness it came out. At least we know they are acid and lignin free! ;)

No Fun Friday!

2008-08-23T02:37:00.000-07:00

Actually the unfun started on Thursday. I was unloading dishes while my 3 little monkeys were playing together. All of sudden I heard choking.
Now as a nurse you learn CPR and more advanced Life Support. And while you are grateful for the information you hope you never have to use it, or that at least you have a good team when you do have to use it.
As a mommy, especially when you have little ones, and a heart baby, you prepare yourself as much as you can. You prepare for the unexpected, but you still pray these things don't happen.
I have no idea what Angelina got in her mouth, as I looked around I saw nothing small enough for her to be choking on. What I did see was my youngest daughter going from blue to a deep shade of purple. It must have been seconds, but it seemed forever, before my efforts to relieve her choking were successful. I came close to asking Marcelina to call 911. She never actually coughed anything up, but whatever she was choking on was no longer obstructing her airway, her color came back, she was crying and tired.
She seemed OK after this, but soon started having gagging spells, and with that came blue spells. I figured maybe what ever she had choked on was possible lodged somewhere in her esophagus and working its way down. She drank water, and even ate lunch after this. She spotted little Alex's chocolate milk and really wanted this too. So sweet brother shared with her.
Just when I thought OK coast is clear, she decided to throw up some of her lunch. Now don't you love those moments when you keep trying to decide, do I go the hospital, do I watch her a little longer....? So off to the ER we went and as usual there was no more gagging, just happy smiley Angelina. I contemplated leaving the ER, but there's always that what if.....?
The first set of Xrays were clear- yay! They did a second set to make sure lungs OK, well these showed there was a possible obstruction in the left lung. I was told they would need to do a bronchoscopy and look inside. Yes, at this point the tears started. I let my daughter choke on something. She's going to have an invasive procedure, and yes it is my fault! I know, I know, these things happen. Believe me I'm super careful with what toys the kids have around Angelina, and what's within her reach. But who else is a mother to blame but herself?
We got to the ER at 4:25pm Thursday. She didn't have the bronch until 11:00 am on Friday. Angelina was actually stable the whole time. She was not having issues breathing, no gagging and her oxygen saturations were normal for her. She actually kept signing for milk, my poor baby, I couldn't feed her.
It took for ever to get the bronch done because they kept passing the buck around as to who would do the procedure. Three different services assessed her Peds Surgery, ENT and pulmonology. Seriously I just wanted someone to do it and get it done and over it! So in the end it was done by pulmonology and they found nothing! As far as the Xray, it could have been because she's a wiggly baby, or just normal for her.
So once she woke up from the sedation we rushed home to sleep in our own beds. On a funny note, I learned Angelina is real talkative when drunk:

So please if you have little ones, make sure you child-proof everything and learn CPR!

Dancing Divas!

2008-08-20T00:48:00.000-07:00

While my handsome monster played quietly in his room today....

His sisters decided to dress up and get a little glamorous!

Angelina loves going through Mommy's bag!

Now its time to play a little!

And even dance a little!

Marcelina was very excited about her new Hannah Montana top!

She was very inspired, can you hear the music? Sorry Angelina was not amused I wasn't paying attention to her!

Thanks Kathy! You make beautiful stuff, as you can see the girls loved it!

No more spoiling!

2008-08-15T00:44:00.000-07:00

So all these months of waiting for little Ms Angelina to reach milestones have, I noticed -spoiled us! How you ask?

1. Concern: When will she eat by mouth and not need her g-tube?

Well we have not used her g-tube for feedings in over a week. She is completely eating by mouth! Yeay!

How spoiled: we all slept through the night! She would sleep 12 hours straight, because of her continous night feedings. Now she's up by 7 hollering because she wants to eat! She wants to eat EVERYTHING, can't eat anything around her you're not going to give her because she's coming after it!

Oh yes, she feeds herself...and the floor, the wall, my clothes...how could I have forgotten the messes that come with this? ;)

2. When will she climb and stand?

Started doing it a few weeks ago. Well not standing by herself, but pulling up to standing...On everything! She's even tried climbing out of the shopping cart twice (well the first was more like almost falling out cuz bad mommy didn't strap her in) but the second time definitely climbing out with straps on!

How spoiled: everything wasn't within her reach. Kids can't safely put their small toys up on the couch anymore. Didn't need a gate on the stairs. She wants to climb up all the time. I figure this is good, we've been working on this for a while in therapy. But there's a reason Mommy sends brother or sister to get forgotten things from upstairs MOMMY DOESN'T LIKE TO CLIMB UP AND DOWN THE STAIRS ;)

3. When will she walk?
Soon hopefully, for now she loves to practice.

How spoiled? We would sit her down on the floor and she would be content crawling everywhere. Now, you go to put her down: she straightens out her legs, and won't let go of your hands so you can walk her everywhere. Is that why my back has been hurting?

Am I complaining you ask? NO WAY! I love having 3 little monsters running around! Plus its my hubby's job to spoil me!

I am thrilled Angelina has stopped spoiling us! Keep it up baby girl!

Help! Cloth Diapers??!!!

2008-08-11T20:46:00.000-07:00

Ok, so I know the next topic was suppose to be about the psych issues discussed at the conference. But at the moment i need help with a current issue we are having.

Angelina has had this "diaper rash" for about a month now. We have tried almost EVERYTHING! All the different ointment tricks have been attempted to no avail. We are currently using organic hypoallergenic diapers that have helped some. At first I thought they weren't really helping, until i ran out of them and used some left over Pampers we had...BIG mistake! It flared up even more. It almost looks like a burn at times.

Can you believe it does not bother her?!! Thank goodness for that!

So from this I gather it is an allergy to disposable diapers. We have already tried 2 different hypoallergenic disposable diapers.

Next step: Cloth Diapers, YIKES! When I told my hubby he got the same look on his face, I'm sure i have now! Of course we will do what we have to. I've done some research and its very overwhelming. Its a big expense initially so I want to make sure I get as much info as I can.

So if you've used cloth diapers and or know someone who has, please HELP!

We have a few questions:

Which brand?

All in ones, pre folded, covers?

Ok why do they have cute cloth diapers if you have to put covers over them?

My hubby wants to know if its really ok to put pooed diapers in washer (yuck), do you pre hand wash? We know you first dump poo in toilet.

I'm pretty sure I don't want to use flushable inserts.

Can't wait for your input, I need to shop soon!

No Baby Signing Time?!

2008-08-01T14:09:00.000-07:00

OK they weren't that specific, but most of the professionals at the conference were in agreement: absolutely no signing! It made me so sad! Angelina absolutely LOVES Baby Signing Time! Its the only thing that she watches on TV (good thing). And to watch her sign is not only the cutest thing but also so helpful. She knows about 15 words in sign language.

See how much she loves it? (make sure you turn down music down below-- sorry about laughing!)

Let me start off by saying that I am so grateful for and blessed that there are people like Dr. Shprintzen, Karen Golding-Kushner, Dr. Ysunza and so many others that are so dedicated to the VCFS Education Foundation. They dedicate their careers to our children- where would we be with out them? They work so hard to learn more about and teach others about VCFS. I mean VCFS is one of the most common genetic disorders.....yet how many people have heard of it? How many of us hadn't heard of it until our own child/ family member was diagnosed with it? So for their help and dedication I have utmost respect and gratefulness.

Having said that, I'll have to admit I was flabbergasted at how adamant they were about not teaching our kids sign language. When Dr. Shprintzen specifically said NO SIGN LANGUAGE to me I was sad, but said OK! I mean he's been doing this for a long time right? And Lord knows the last thing I want to do is delay, or interfere in Angelina's speech and language development.
As I sat thought the conference it kept bugging me. They wanted me to from now on ignore her signing and only use spoken language. I felt like, "How can I do that to Angelina, isn't that kind of mean?" Then I heard what other parents had to say and realized how many parents were using it. So now I had heard both sides and realized I could argue for both- great! Now what?

They say no because: it gives kids easy way out of talking, especially if others can't understand them; also they feel why waste time and energy on teaching ASL, when you can spend that time just focusing on speech and language therapy. Basically, they are saying "it does not improve speech production nor does it make them more receptive to speech therapy."

Why yes: start communicating with kids sooner, and for those moments when you've tried really hard and still can't understand them. Some VCFS kids have speech delays, so what if cognitively they can't speak until they are 2? I personally think that by learning sign language they are having to use their brains, they are learning- isn't that good? For more benefits check out the Signing Time website.

So Alex (hubby) and I talked and discussed issue. For now we will continue with sign language. Why stop the communication that we already started? At least we are ahead of the game by knowing what problems might arise in the future. We will resume speech therapy and do as much as we can at home!

Eat and Drink song

See her telling brother she wants water to drink?

What do you all think?

"Severe Speech and Language Problems

2008-07-31T07:03:00.000-07:00

and learning disabilities are among the most common" problems associated with VCFS according to Therapy Techniques for Cleft Palate Speech and Related Disorders, by Karen J. Golding-Kushner. The author is also the Executive Director of the VCFS Education Foundation and was a speaker at the conference.

Ok, I did not know that. I did know that there were speech problems and language impairments. My interpretation of that, was I knew hypernasality and speech delays were involved. So honestly I figured "ok, not too much of a big deal!" Well that is not the case! It is a big deal! Not until I heard some of the kids talking did I really get it. Unfortunately I get it, but not enough to really explain it to you...not in a few sentences anyhow.

Some of the speech/language problems found in VCFS are: severe Hypernasality, severe articulation impairment, delayed language, dyspraxia, high pitched voice and hoarseness. What does that mean? Basically it sounds like someone is pinching your nose, and your talking without really pronouncing the consonants, and it may sound high pitched. There may also be an additional sound made, called a glottal stop which is like the sound you make in the middle when you say uh-oh. Confusing? I know!

I borrowed an example from a fellow VCFS mommy (Pam hope you don't mind) her little girl sings Minel Minel mina Nar, Ho oner wha oo are. (Thats Twinkle Twinkle Little Star).

The m-sound (lucky for ma-mas) is not affected. Some of you may have heard Angelina say (or holler) Ma-ma all the time. When she is not yelling, I really do consider it a blessing that she can say that much. Otherwise Angelina is a very quiet baby. Once in great while she'll say da when referring to Daddy, and Haaaa! for Hi. Being able to pronounce other consonants is definitely a good thing!

So not until she actually starts talking will we know if she'll require surgery. For now the right kind of speech therapy is important!

Enough info for now, but stay tuned: They said absolutely
NO SIGN LANGUAGE!

A few pics from the trip!

2008-07-31T02:48:00.001-07:00

So what happened at the conference?

2008-07-28T05:05:00.000-07:00

It was truly a neat experience. Some parts intrigued us, some made us sad, some went over our heads (these parts were meant more for the professionals), and some made us wonder.
Some of the topics that stuck out to me, were: speech impairments, feeding issues, and psychological problems. On the topics of speech and feeding I made sure and payed special attention. These are current issues for us, and I want to make sure we do what's best for Angelina.
Feeding: VCFS babies tend to be smaller and skinnier than most kids. Most of us think that the chubbier the baby- you know the type that we can't help but pinch their cheeks- the healthier they are. Not true for VCFS babies. Actually VCFS babies tend to be overfed!
So why does Angelina have those big pink cheeks? Well regular formula has 20 calories per ounce, we've always fed Angelina 24 calorie/ ounce formula, as prescribed by her doctors. Now she's actually on 30 calorie per ounce formula! She's suppose to take 3- 8oz servings of this a day, along with what ever she'll eat! Well, that's not really what we are doing with her. . .
I had my doubts about this to begin with. I wondered if this heavy formula (similar to Ensure or Pediasure) wasn't making her so full that she would not want to take anything else? Well after having our 1:1 with Dr. Shprintzen and having heard from other therapists at the conference we came home and changed how we were feeding Angelina. And guess what? This girl loves to eat! She actually hollers at us if we don't feed her fast enough! I almost can't eat at the same time as her, because while I'm trying to take my bite of food she already wants her next bite. We still give her the higher calorie formula, but only 1- 8oz serving, otherwise she drinks regular milk or water.
Dr. Shprintzen talked about a separate growth chart for VCFS kids. That way they won't be pushed to eat more than they can handle. Hopefully this will be accepted amongst all pediatricians. Angelina wasn't even making it on the regular growth chart for a while, now she's barely in the 5th percentile.
When we were in the airport somebody commented on how cute she was, and asked if she was about 8-9 months old? They were shocked when we said she was 16 mos! At least we know that this is really ok. Plus look at us, our kids will always be on the smaller side!
Will tell you more about Speech and Psychological issues next time!

Up early in the morning!

2008-07-19T23:21:00.000-07:00

Every morning we have breakfast with the experts. Which means we get to eat and pick at their brains at the same time! Well, Breakfast starts at 8 a.m. and since we are not at home, this means we are not in our pjs, but ready to go for the day...including Angelina! Normal wake up time for her is usually 9-10. So in the morning this is the look I get: Why Mommy?

Our first day....

2008-07-18T14:34:00.000-07:00

Wow, it's been a good day! Very informative, and in a little bit we get to go to a "Motown Magic" family dinner with music and dancing. With all this new info I think we are more ready for a nap!
We actually got our first 1:1 today with Dr. Shprintzen, this was very exciting as he is the founder of the Velo-Cardio-Facial Syndrome Education Foundation, and the first to really describe the syndrome! I'll tell you more about this later, for now we have to run!

In Michigan!

2008-07-18T02:03:00.000-07:00

Wow we are here! Yesterday was a bit of long day, but we survived! Angelina did so well on the plane, we are very proud of her! This airport out here is huge! We did so much walking just in the airport, and we must have gone up and down elevators at least 6 times in the airport alone! When we finally got to our car rental destination @ the airport, they shuttled us elsewhere, then ge got to wait for an hour in a small, badly air conditioned room, with a long line of people. Needless to say we were all hot and sticky, but
Angelina has been such a trooper, still smiling and clapping when she was happy about something! Three hours later from arriving in Detroit Michigan, we were finally in our room. Sleep was good! There's a 3 hr difference over here, so I'm up getting ready for the first day of our conference! Yeay!
Thanks again to all you who made this possible!

VCFS conference

2008-07-16T01:55:00.000-07:00

Oh my goodness, tomorrow we will be in Troy, Michigan! I really can't believe we are going! Feelings are mixed about this new adventure: excited to be able to participate in a conference specific to Angelina's syndrome; edgy....I can handle all this information good or bad right? Nervous, haven't flown since before 9/11, which means I haven't traveled via plane with my children! Lets hope Angelina enjoys her plane trip!

Angelina had her hearing test yesterday. I'm not sure how I feel about the results. Her left ear has very little hearing loss. The audiologist said it wasn't something that she would need a hearing aide for, and that it was very minimal. In her right ear there is no hearing loss BUT there is a delay- huh? The message from the ear to the brain is slow. Ok, that doesn't sound good right? Still not sure what to make of it, it's troubling because well, what's causing the delay? And why only on one side? So now the recommendation is to see a neurologist. One more specialist to the list of her doctors!

On a good note, little Ms Angelina is eating so well by mouth! She is definitely a frijolera! (loves beans) Now that she doesn't get continuous tube feedings through the night, she is waking up early and hungry! We are so happy to see her eating so well! If she keeps it up, then we won't need a G-tube anymore!

Wish us luck on our trip, I will try to post from Michigan on how our trip is going! Oh, and comments are always welcome! Just click on comments!

A day at the Firehouse

2008-07-11T00:41:00.001-07:00

A day at the Firehouse

2008-07-09T12:10:00.000-07:00

I've been meaning to thank the Rancho Cucamonga Firehouse Association for making a donation to Project Angel Heart. Not only do they help out our community in all kinds of emergencies, but they are also generous! Thank you for thinking of us! And while we hope we don't need you any time soon...its nice to know that such wonderful people have our backs!

I also wanted to thank fireman Matt Eddie. He gave our family a wonderful tour of the firehouse. The kids LOVED it! So not only did he approach the association about a donation for us, but we had a great educational evening with him at the firehouse. Thanks Matt! Unbelievable to think we have known each other since elementary school!

Update on Angelina

2008-07-07T00:32:00.000-07:00

As you may know Angelina has a feeding tube called a G-tube, which we feed her formula through. She has had it for a year, and we've been working with the help from Occupational therapy to get her to eat orally. Its been a slow long process, but I'm happy to say she eats quite well by mouth now. Why, you wonder did she not do so before? 3 reasons: 1. Cardiac babies tend not to be good eaters, 1 because it tires them out, and 2 because when they do heart surgery they come very close to a nerve related to eating. 2. DiGeorge babies are known to have eating difficulties. 3. Angelina use to have severe Reflux or GERD, and everytime she threw up it always flowed right out of her nose. It was horrible. So this gave her a major aversion to having liquids in her mouth.

Luckily she is doing really good with eating now. So our goal is to get her to a point where she does not need her G-tube at all. Last weekend I think she was trying to make a point by pulling it out 3 times! Not cool! Had to involve 2 other nurse friends in the process, because she was a wiggle worm, fighting us when we would try to put it back in! Twice we were able to put it back in, we finally ended up having to make a trip to Loma Linda's ER to have them just put a new one in. I think she's trying to tell us she's done with it!

Angelina's G-tube

2008-07-07T00:28:00.001-07:00

Alex's Birthday!

2008-06-26T12:00:00.000-07:00

It's my monster boy's birthday today! He is 4 years old. Just wanted to say I love you Baby and Happy Birthday!

Yes this him smiling! Anybody seen that episode on Friends, when Chandler and Monica go take pictures? Well, if you have you'll know why Auntie Betsy was calling him Chandler!

VCFS and Angelina

2008-06-25T21:20:00.000-07:00

As you know we are attending the VCFS conference in July to learn more about Angelina's syndrome. Her syndrome is known as Velo-Cardio-Facial Syndrome or DiGeorge Syndrome. It is a very complicated syndrome in that it can involve so many problems with different body systems, up to 180 reported anomalies!

We are already aware of some of Angelina's problems:
Cardiac abnormalities: she's had 2 of 3 heart surgeries
Suppressed immune function: she's always on antibiotics to help her prevent infection
Hypocalcemia: She has to take calcium supplements to prevent problems such as seizures (she had them when she was 2 days old)
Feeding Problems: Angelina is mostly fed through a feeding tube through her tummy, although she is eating more and more by mouth!
Delay in achieving developmental milestones: currently she gets weekly physical therapy and occupational therapy to help with things such as crawling, standing, walking and eating. A special teacher comes to our home as well to help her reach her milestones.
Sprengel's Anomaly: her left scapula wings out slightly, causing her some problems with strength and stability on that side.
Abundant Scalp Hair: can you believe that? We don't consider her beautiful hair a problem!

We recently saw a clinical geneticist, Dr. R. Clark. Because she is a specialist in genetic disorders, she has set us up with more consultations and tests to rule out other problems she may have.
So our appointments include: an Audiologist, Orthopedics, have a Kidney Ultrasound, and see a Craniofacial Surgeon.

The first 3 we have already seen. Her kidney ultrasound came back normal. Orthopedics thought her Sprengel's anomaly was minor and won't require surgery.
Now her audiology appointment was a bit upsetting to say the least. Apparently Angelina has small ear canals. They had problems running hearing tests, for a few reasons, one being they thought she might have a cerumen impaction. (too much wax in ear--YES, I clean her ears!) At this point the tests they were able to perform showed mild to moderate hearing loss. BUT, this is not definite until we see her pediatrician who will clean her ears out, and then she will have the hearing test repeated. So, I'm hoping and praying that her hearing will be fine. Her repeat test is scheduled for July 15th, I'll keep you posted!
Help us pray that hearing loss won't be added to her list!

Troy, Michigan here we come!

2008-06-25T02:26:00.000-07:00

Well our flight is booked, our hotel room is reserved, and the conference is payed for! Actually its all payed for! Wow! I still can't believe it-- we are really going to the VCFS conference! We are so grateful to all of you who helped us get there. It already has been an amazing journey. With each event I feel like I learn so much more about life, spirituality and the kindness in people's hearts. It really makes me want to be a better person. I truly feel blessed. My goal is to pass this on to my children. For them to appreciate how blessed we are, and to treat others with kind open hearts. Thank you to all of you who have helped us get there. Thank you to everyone who had a fundraiser for us:

Hector and The Home Depot for the Car Wash AND of course everyone who helped that day!

Maggie Gardner for the Tupperware fundraiser

Tawnya for the Gold Canyon Candles fundraiser

Erica Ibarra for the Avon fundraiser

Thank you to everyone who bought something or made a donation to Project Angel Heart!

Project Angel Heart Car Wash

2008-06-09T21:45:00.001-07:00

Car Wash: A Great success!

2008-06-09T20:35:00.000-07:00

Wow! Our car wash was such a wonderful success! Our grand total was: $2770!!! Alex and I are still amazed and so thankful for all of you! So many of you helped physically at the carwash, with generous donations, with your thoughts and prayers, and in other ways that weren't seen! So here comes my list of long thank yous! Yes I do feel like I won a Grammy, but Better!!!

Hector, thank you babe, for coming up with this idea and making it happen! Thank you for working so hard all day! Thank you for being so thoughtful mijo! I love ya lots!

Thank you to the Rancho Cucamonga Home Depot for allowing us to use their parking lot and water, for donating supplies, for helping us advertise, and for being so supportive. You are such an amazing crew! Thank you John, Nora, Billy, Henry, Tricia and Hector for making it happen. On top of all that so many employees came over to make donations. Just those donations totaled $509! And if that wasn't enough Home Depot will match that! That's $1018! (This was included in the above total) Thank you and God bless all of you!

Thank you to everyone who participated with the physical part of actually Car Washing! Lito, Grandpi, Uncle German, Uncle Hector, Mikey, Ulysses, Peter, Richie, Ms. Herrera, Ms. Peggy and hubby Dana, Uncle Jimmy, Bianca, JJ, Erica, Gabby, Matt, Adrian, Uncle Adam, Auntie Debbie, Lauren and of course Alex and Marcelina!

Thank you Mami for running the hot dog sales and Nana for assisting with the washing when needed. Thank you Auntie Sa-Sa for being our cashier, PR person, and for making extra signs!

Thank you Lauren & Starbucks for donating all the coffee and baked goodies! Thank you Maury for the German Chocolate cake, Diana & Jim for the donuts (and more), and Mandi for the banana loaf. Thank you Auntie Debbie and Uncle Adam for the hot dogs and goodies!

Thank you Marie for being there so early and helping with bake sales, Thank you Bryanna and Brytlinn for passing out flyers and for twirling the car wash sign! Thank you Peggy for the moral support, and Michele for helping with the advertising too!

Thank you Glenda, for walking around that big parking lot with the kids, recruiting customers!

Thank you Angie, Merrisa & Jeremy for twirling our big sign and recruiting more people!

Thank you Jessie for having watched Angelina! Thank you for being so encouraging while I was all stressed out! Thank you for launching the fundraising ideas!

Thank you Betsy for sending the business cards, for the bubbles, and mainly for watching my little monster Alex! He is still talking about how much fun he had!

Thank you Camille and Babies So Special for your support!

Thank you to everyone who made a donation, whether it was monetary, baked goods, food, time and love!

Thank you to everyone who got their cars washed!!!

You are all amazing! Thank you from the bottom of my heart!

Tupperware Fundraiser

2008-06-04T17:05:00.000-07:00

We are having a Tupperware Catalog Fundraiser. Tupperware will donate 40% profit of items ordered from this new catalog. Over 60% of the items are exclusive to the fundraiser catalog. Over 70% of the items are $20 and under. There is no shipping or handling on orders as long as they are turned in by June 18th! Please email me at Mami.Adame@gmail.com if you'd like me to send you a catalog. Angelina loves her Shape-O Toy from Tupperware!

A day at the park, Heart Connection Picnic

2008-06-04T10:11:00.001-07:00

Car Wash

2008-05-29T23:11:00.000-07:00

Our first fundraiser is set for June 8th! Thanks to my brother Hector we will be having our Car Wash at The Home Depot in Rancho Cucamonga. We hope you can make it out, and get your cars washed! We will be starting at 8 a.m. until we can't wash no more! Tell your friends! Bring your neighbors!

The Home Depot
North/ west corner of Rochester & Foothill
11884 Foothill Blvd, Rancho Cucamonga, CA 91730

DiGeorge Syndrome

2008-05-28T06:14:00.001-07:00

As many of you know, Angelina has been through 2 open heart surgeries. What some of you may not know is that she has DiGeorge Syndrome, also known as Velo-cardio-facial syndrome (VCFS). VCFS has had as many as 180 anomalies reported. Common possible characteristics of this syndrome include heart problems, immunity problems, feeding problems, delay in achieving developmental milestones, delay in speech and language development, learning difficulties, kidney abnormalities, and psychological or psychiatric problems. These are only a few of the problems! Just this list alone is overwhelming to me.

It has taken me a year to be more comfortable researching Angelina’s syndrome. It breaks my heart every time I do! Then I look at her and realize how amazing she is! Not only has she had heart surgeries but she also has a feeding tube through her tummy that we must feed her through, she goes to physical and occupational therapy, she takes several medications and sees her doctors frequently.

Thankfully there is the VCFS Educational Foundation. It is through this foundation I have found inspiration; I have learned more about the syndrome and about how to care for our baby girl. I recently discovered this Foundation is having a conference, their 15th Annual Scientific Meeting. It is geared towards parents, clinicians and of course scientists. At the conference they will share “the latest updates in VCFS, therapies, education, and current research....there will be a chance to have lunch with the experts and one on one time with many professionals, through the individual consultations.” Can I tell you this makes me so excited?!! It’s from July 18-20th...in Troy, Michigan. Caring for our three kids; Marcelina 6, Alex 3, and Angelina when both parents work is already a challenge in itself. Having to come up with $3000 for Angelina and us, her parents, to attend this conference is an even greater feat. Unfortunately there is no extra money in the household budget to pay for this very important trip.

In order to find a way to make the journey, we are planning several fundraisers. We will keep you posted on these and hope you can join us! If you can help us with donations, you can also do it through the DONATE link on this website. The conference is just around the corner; please help us make it there! We thank you in advance for your help!

Happy signing!

2008-05-25T08:55:00.000-07:00

Been working on sign language with the kids. Alex and Marcelina love it, especially when they get Angelina to use it too. All three of them are picking it up nicely. Angelina can sign "water," "milk," "mama" and her favorite "more!" Funny thing is, I don't remember teaching her this one....

A new beginning

2008-05-22T22:47:00.000-07:00

Wow! It's been a while, but here we are, 2 surgeries later with a little monkey who is all over the place! Thanks for visiting us on our new blog. Angelina is now 14 months old, she is a spunky and very happy little girl. I still can't help but look at her and think "Wow! You are an amazing little fighter!"

Cardiac-wise Angelina has done great. It's good to see her cardiologist smiling after her echos (heart ultrasound). While she's not walking yet, she's crawling, scooting and rolling everywhere! She's thinking about pulling herself to standing, but for now she's paused at pulling up to kneeling position. What keeps her happy and smiling right now? Her musical toys with buttons (not necessarily my favorite) and her brother and sister.

In my opinion lil Alex smothers her. He is always in her face kissing her, smiling at her and trying to get her to laugh. Whenever I call out for him to back off a little, he always replies, "But she likes it!" And sure enough she'll have a big smile on her face waiting for more!

Marcelina is mini-Mami. She is very protective of her. She tells me how to take care of her! "Mommy you have to wipe her nose very gently, just barely dab it," she tells me! When she comes home from school, its always, "How is Angelina today?"

We have 1 more surgery to go, sometime between when she's 18 to 24 months old. For now we are just getting stronger and bigger!