Tuesday, August 26, 2008

Scrapbook...anyone?

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! ;)

Saturday, August 23, 2008

No Fun Friday!

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:


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

Wednesday, August 20, 2008

Dancing Divas!

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!
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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!

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

Friday, August 15, 2008

No more spoiling!

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!

Monday, August 11, 2008

Help! Cloth Diapers??!!!

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!





Friday, August 1, 2008

No Baby Signing Time?!

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.

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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

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See her telling brother she wants water to drink?
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What do you all think?