Cardiologist Appointment: No Change

This morning, I took Anna to the pediatric cardiologist for a follow-up appointment.

Anna has a coronary fistula. In simple terms, one of her coronary arteries, instead of staying on the outside of the heart, actually dips back down into one her chambers.

The fistula was discovered when Anna was a newborn during an echocardiogram (ordered because her pediatrician suspected Ds). At that time, the fistula was very small, and we have been monitoring it since then to make sure it remains small, or better yet, closes on its own. At today's appointment, the fistula was still there, but it has not changed any in size. Her cardiologist does not see the fistula as an issue to be concerned about (at this time), but wants to continue to monitor her with yearly appointments to make sure no adverse effects develop.

So, the official report is "No Change", which is both good and bad. The bad news is that Anna still has a small fistula and the potential (albeit very slight) to develop complications. The good news is that we should not fret about it. According to her cardiologist, if Anna gets sick, the issue is most likely not with her heart. Although Anna's cardiologist is really not concerned about the fistula, he still recommends antibiotics for dental work, and other such procedures, simply as a precaution.

And, he also said getting the H1N1 vaccine for her is a no-brainer. So, I guess I will be calling her pediatrician to make an appointment for a shot, and a prescription for orthotics.

IFSP/Speech Evaluation

Yesterday we had Anna's 6-month IFSP. I dread the IFSP meetings because it is easy to get caught up in the things that Anna isn't doing yet, instead of celebrating how much she has accomplished since our last meeting...which is a lot! (babbling, finger-feeding, crawling, drinking from a cup, signing, sitting up, and waving to name a few)

The meeting went well, and as expected. The main outcome is that we decided to keep therapy levels the same; PT and Special Ed once a week and OT every other week. We also decided to have a speech evaluation to determine if we should start speech therapy as well. (More on that below)

Some specific goals that we set for Anna for the next 6 months include: crawling on hands and knees (she army crawls now), pulling to standing and cruising, increased verbal sounds to include 'p', 'c', 'g' sounds, learning body parts, increased use of sign language to communicate, and learning to nest/stack blocks or cups.

Anna's PT also recommended orthotics for Anna. Anna's ankles are very loose and floppy, so when she stands, she tends to bend them inward, which throws her hips backward and her belly forward --- an all-round awkward standing position. The PT said the orthotics should help align Anna better, which would in turn, help her stand and walk properly. I will have to do some more research on this matter and talk to her pedi before moving forward. (I guess I shouldn't be complaining about the expensive shoes anymore)

The speech therapist came today for Anna's evaluation. She recommends Speech Therapy every other week (the opposite week of OT). The therapist said that Anna is not quite ready for full-on speech therapy, but would benefit from some of the oral stimulation exercises, etc. So, we look to be adding ST soon.

And finally, here are a few cute pics of Anna performing a few of her new "tricks".

Pointing (a new skill that has emerged over the past couple of weeks) to her new best friend, Maggie. Anna has also recently starting signing dog (or making a gesture that we recognize as dog). Each time Maggie walks past, Anna watches her and then signs "dog". (Oh, and please excuse the HUGE wet stain down the front of her shirt...forgot to put the valve in her cup and she spilled it everywhere)


Blowing (or trying to imitate me blowing on her face). The ST was actually impressed with her effort and ability to do this.

Being Cute. Oh, wait!! She already had this mastered! =)

Busy Days Ahead...('Tis the Season!)

I have to stop looking at my calendar. Every time I do, I start to hyper-ventilate a little due to how jammed packed the thing is!

We have many busy days ahead of us, but at least a lot of them are "fun" busy days =)

Tomorrow my parents arrive from Arizona (Happy! Happy! Joy! Joy!). They are staying through Thanksgiving. My Dad is going to be helping Jonathan (okay, Jonathan is going to be helping him) finish off our new bedroom. Our family room used to have cathedral ceilings, but we had a floor put out over it, so now we have an extra bedroom upstairs. Anyway - that is what will be keeping my Dad busy most of the time.

My Mom will busy helping me keep my head above water as I run around to doctor appointments, school functions, soccer, church events, therapies, etc. That is in addition to helping me prepare Thanksgiving dinner for 13 adults and 5 kids.

Needless to say, I hope my parents are well-rested before coming to visit =)

Yesterday, I took Anna back to the opthalmologist about her right eye. For the entire month of October it was one big gunky mess. And, under her poor little eye was getting red and chaffed from all the tearing. The doctor wants to repeat the tear duct probing procedure we had done back in June (right eye only). I am none too thrilled, but would like to get the issued resolved, and would like to do it before the end of the year since we have already met our insurance deductibles (I know, lame reason). So - Add that to my calendar!

Other upcoming 'events' include: 6-mos IFSP (looking to add Speech therapy to our regular regimine), Cardiologist appointment (hopefully we won't have to ever go back!), MOPS meeting, Pinecar Derby/Pancake breakfast for both Charlie and Paige, Reading to Paige's class, Thanksgiving, Helping SIL and BIL move, NW New Jersey DS Group Holiday Party, Cookie Exchange...and the list goes on. But, most importantly - My Birthday!!! =)

Germs, Stay Away! You are not welcome in this house because we have no time for you right now...Busy Days are Ahead!

Cuddle Bug

Anna has been quite the little Cuddle Bug recently.

One of her favorite ways to spend Sunday afternoons is sitting on her Daddy's belly as he watches football. They like to play and giggle, and then Anna just lays her cuddly little self down and gives her Daddy a big 'ol hug.

Love her!

Cheers!

Anna has learned a new sign...and a new trick!

Anna can now make a sign for "drink". Ok -- it is not the correct sign, but she, and we know what it means, and therefore we can communicate!

Anna has also finally gotten the hang of drinking out of her cup by herself. Now that she knows how to do it, it is one of her favorite pasttimes. Perhaps that is why she quickly learned the sign for drink -- so she can ask for her drink over and over and over again.

So - raise your glasses with Anna and take a drink! =)
Cheers!


In addition to being able to sign "drink" (or at least make a gesture that we all recognize as meaning drink), Anna has mastered "more" and "all done" (her versions of them anyway). I am really excited to see her starting to understand language and communication. I was starting to get frustrated because she just wasn't getting it, and I so desperately want her to be able to communicate her wants and needs to us and others.

But, we are now on our way! I have ordered the Baby Signing Time DVD's and look forward to watching Anna learn more new "words"!

Halloween: Boom and Bust

Halloween was a little bit of drag around here because it was raining. That did not stop the kids from hauling loads of candy, though!

Jonathan took Charlie and Paige (aka Batman and Cinderella) to the Trunk-or-Treat party at our church early in the evening. The kids had a great time getting filling their bags with candy, eating donuts off a string without using their hands, having their face painted, and many other fun and exciting things for little kids.

When they got home, they were ready to hit the neighborhood. Anna was not, however. In fact, I didn't even manage a picture of the three kids because she was fussing so much. It was an early night for her.
So, Charlie, Paige and I set out with a neighbor friend. It was just misting - not even sprinkling- when we started out. But, by the time we were on the far end of the neighborhood, it was pretty much pouring on us. We got lots of candy, but we also got soaked!

It was fun, though, and the kids had a good time.

Speaking of kids...check out this big kid making some cool pumpkins =)


Hope you all had a Happy Halloween! Look for future posts about how I plan to work off all the candy I will most likely consume =)

Strawberries and Bananas

Today is the last day of Down Syndrome Awareness Month. It is also Halloween. I have decided that pictures of Anna in her costume are the best way to celebrate both events!

This year, Anna is a Strawberry. I like to call her "Strawberries and Bananas" =)

She is none too happy about the hat on her head (going to be a long winter), but I managed a few pics. =)

The baby doll helped occupy her hands to keep the hat on.



Ha! Ha! Mommy! I got it off!!

Will post some more pictures from Trick-or-Treating later!

Halloween Costume Parades!

'Tis the season for costumes and candy!

At Paige's school yesterday, they didn't wear their costumes. Instead, they pretended to be different types of animals. They each chose an animal plate (Zooplates), and then they were to wear clothes that matched the color of the animal they chose. Paige chose a bird. The plate was blue and yellow, but we didn't really have anything to match. So, me being cheap, convinced Paige that she was a colorful parrot or macaw, and that she needed to wear a read shirt.

Here are a few pics and a quick video of the day.






Today at Charlie's school, they had a big costume parade. We had the option of picking our kids up and taking them home for lunch. After lunch, we change them into their costumes and send them back to school. Once everyone was back to school and in their costumes, they all paraded around the parking lot.

And, here are a few pics and quick video from Charlie's parade. (BTW, Charlie is Batman)



Paige also insisted on wearing her costume (Cinderella) to the parade. She had fun hanging out with her friend Ryan and laughing at all the costumes.


Looking forward to Trick-or-Treating tomorrow!!

More School Picture Results!

Isn't she a doll?! =)
Sooooo glad that we purchased school pictures for both her and Charlie!
And, how cute is her class?

Doggie Book

Anna loves her doggie book.

She loves to pat it gently.

Notice the nice use of her pointer finger to show me the doggie's nose.

Anna thinks peek-a-boo with the doggie book is the most fun!

And when she is all done, she looks around for Maggie =)