Monday, September 29, 2008

Speech Therapy please!

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!


video

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!

Friday, September 26, 2008

Still Sick





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!

Wednesday, September 24, 2008

Yuck!

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!

Monday, September 22, 2008

Why We Love Baby Signing Time

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!

Friday, September 19, 2008

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

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!)


video


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

Some Peace

Helping out with Physical Therapy

My New Markers!

Thursday, September 11, 2008

Sorry!

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!

Wednesday, September 3, 2008

Fontan Time?

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.