Reflections - Love That Shot Challenge

Lillie's Developmental Evaluation

We took Lillie for her first developmental evaluation yesterday. Two therapists (one speech, one occupational) played with her for about an hour. Lillie did great and we found out she is not significantly delayed in any area (we kind of figured that already). She is "at risk" for becoming delayed in a couple of areas where she didn't score quite as high.

Her "Receptive Communication" skills were a little low. We know she can hear, but she isn't making the connection between sound and meaning yet, she isn't "looking for the source of the sound." They want us to get her hearing checked to rule out a physical hearing problem. The other area she had a lower score in was "Adaptive Self-care"...she got a lower score here partly because she isn't eating solids yet. The therapists said that's not really fair because she is getting the best nutrition possible and that shouldn't count against her, but it sort of does on the test (standardized testing is already affecting her). Since she does have a "week latch" the therapist gave me some exercies to do to strengthen her face muscles and get her ready for the spoon. She also taught me the correct way to introduce the spoon so we don't form bad habits from the start.

Not surprisingly Lillie scored very high on social skills, particularly adult interaction. She loves attention and she prefers people over toys!

She was within normal limits in every other area. Her "Fine Motor skills" scored on the low end of normal, and the therapists recommended occupational therapy once a week to help with fine motor skills and hearing skills. If we lived anywhere else, a therapist would come to our house for this. But they have no home-bound occupational therapist for Sumter County!! They have one Sumter County therapist, but apparently she isn't occupational, not sure what she is. So we don't know yet how far we'll have to go. We should know in a couple of weeks. I will be placing another call to the "boss" of the therapists though and seeing if I can pull some strings (we're friends with her parents and I spoke with her before the evaluation). Not likely, but I'm gonna try.

DIYDish

www.diydish.com



This is a cool new site about how to "do-it-yoursel" crafts!!! Looks like it's going to be fun!!!

"To celebrate the launch of this new show, our friends at Janome are letting us give away TWO (yes, TWO!!) dream machines! Someone is going to win the Janome 350e EMBROIDERY machine and a second person is going to win the Janome DC4030 SEWING machine! Now how cool is that?!"

Down syndrome update

Thanks to Lacey, I now know that I was wrong about the types of Down syndrome. I've corrected the posts below. All Down syndrome is Trisomy 21. The 3 types are Nondisjunction, Translocation and Mosaicism. I have a call into the doctor's office to find out what type Lillie has (again). Apparently the nurse I spoke to before doesn't have a clue what she's talking about!!

Update: I looked at the report when we were at Dr. C's last week. It doesn't say which type, but it says that all cells have the extra 21st chromosome, which rules out Mosaicism, and it doesn't say that the 21st chromosome is linked to another chromosome, which rules out Translocation. So Lillie has Nondisjuction Trisomy 21...the most common form of Down syndrome. Now we finally know!

Trisomy 21

Lillie has Trisomy 21, the most common type of Down Syndrome. The doctor's office called yesterday to confirm it.

Update: We still don't know what type she has. All Down syndrome is Trisomy 21. The most common is nondisjunction. The other two are Translocation and Mosaicism. I have a call in to the doctor's office to find out what Lillie has.

Another Update: Lillie has Nondisjunction Trisomy 21...the most common form of Down syndrome.

National Down syndrome Awareness Month

October is National Down Syndrome Awareness Month. Our beautiful Lillie, born September 26, 2009, has Down Syndrome. In honor of her, I thought I'd tell you all a little something about Down Syndrome. You can learn more by visiting www.ndss.org.

Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

There are 3 types of Down syndrome. We do not yet know which type Lillie has. The nurse called and confirmed a positive diagnosis, but Lillie's doctor (who can actually understand the report) is out of the office for a couple of weeks, so we're waiting to learn more.

All Down syndrome is also called Trisomy 21. Here are the 3 types of Trisomy 21.

1. Nondisjunction is the most common type of Down Syndrome (95% of cases). It is caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body.

2. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome.

3. Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.

The only way to know which type of Down syndrome Lillie has is through a chromosome study (blood test). That's been done, and we're waiting on the Doctor to let us know what the results are.

Pictures of Lillie

Taken this morning...

We have a girl!!

Lillie Marie was born at 12:43 am, September 26th. She is a tiny thing weighing only 5 lbs 8 oz. She's 18 inches long. She is beautiful and perfect. We are praising the Lord for her!! Pictures coming soon.

I'm in labor!!

The midwife is here, everyone is asleep but me. Contractions are about 2-3 minutes apart and getting very strong. Hopefully we'll have a baby before morning. But since it's now 11:55 pm I don't think this baby will share a birthday with Aunt Tiffy.

God is Amazing

Kenny was called to be the Senior Pastor at Sumterville last night!! (not interim like we thought they were going to do). God is so amazing and we are so excited about this new assignment from the Lord!!

Sewing for Money

While using my wallet at the post office last week, the lady behind the counter asked me about making one for her. She showed me her camoflauge purse so I could find a coordinating camo fabric and we agreed on a price. Today while back in the post office (with the wallet still not made) she told me that a lady in CVS wants one too. She has a camo purse and commented on the post office lady's purse, and asked her if she had ever seen a camo wallet...I was recommended, but they did not share info. So now I have to go into CVS and ask for someone with a camo purse...and then get sewing!!

I'm so excited...my first sewing "job"

An Even Better Zyrtec Alternative

Kenny bought generic, CVS brand vitamin C drink, and I thought, oh no, that's going to taste terrible. It is really good!! We all like it and it's cheaper than name-brand Emergen-C! It's Pomegranate Cranberry flavored.



The Tangerine flavor he also bought was terrible...but the Pomegranate Cranberry...yum! It's a little too tart if you mix it up strong, but dilute it a little more and it is yummy.

Better than Zyrtec

I am currently pregnant and not willing to take Zyrtec or Claritin. Besides, they both make me tired and grouchy, so nobody else wants me taking them! My allergies had gotten so bad I was desperate for some relief, and I found it!



Emergen-C...this stuff is literally better than Zyrtec and Claritin! No more sneezing, runny nose, itchy throat, itchy eyes.

I started drinking 2 per day. Now most days I only need 1 per day, a second if I am going to be around a specific trigger (like a dog).

I read online up to 5,000 mg of Vitamin C would help allergies. My midwife said to try 2-3 per day. I've never needed 3. I got results almost immediately too.

The Matching Wallet

Here is the matching wallet I made for my new Wrangler purse.

Etsy

I opened an Etsy shop!! I only have one item listed at the moment, but I hope to add more very soon. I will be offering painted items as well as hand sewn items, like my purse and wallet.

Visit my Etsy Shop

Wrangler Purse

I decided I needed a new purse. I salvaged a pair of Daniel's Wranglers from the trash and made this.




I made a matching wallet too.

I've been told I should try to sell them, and I just might...

Enjoying Cereal

Daniel loves his Froot Loops. Philip loves them too, but he doesn't want milk on his. However, he loves the milk that's on Daniel's Froot Loops. This reminds us of Arlis and his puppy sharing the cornbread and milk in Old Yeller (one of our all time favorite movies).

First Kill...another one

Daniel made his first kill...this lovely dove. He was hoping to get a whole mess of 'em for supper, but he only got this one. He did a really great job plucking feathers and getting it ready for his Daddy to teach him how to skin it (or whatever you call that process with birds). Unfortunately, it was not a week Daddy was able to help him, and we didn't keep enough ice on it, so he lost it. Poor little guy was so upset to not get to eat it!!

Playing Hookey

One Sunday morning, we got up, got ready for church, then arguments started. You ever have those days? Finally Daddy said he'd had enough and he wasn't going to church (we rarely miss church, but Daddy didn't have to preach anywhere this day). A few minutes later, after the kids had calmed down and stopped arguing, Daddy came out and said to change our clothes, put on walking shoes, and get loaded in the van. He took us to Cypress Gardens!! We had a blast. He then treated us to supper at Outback on the way home. Daddy didn't even turn his cell phone on the entire day! The next morning when he still didn't answer the phone, we had friends coming to look for us (LOL)!

We all rode roller coasters and water slides...we got soaked!!


The Cypress Gardens Ski Show is world famous. This day they only did a 6-person pyramid. I've seen photos with 12-people.


We all enjoyed the rides, even Philip.


Philip doesn't like bananas, but Daddy thought the banana trees were cool.


Audrey of course loved the Southern Belles.

The Flood

Don't you love it when your children are helpful? Daniel (the 7 year old) was cleaning out the dog pens and he fell down in, well, stuff that's found in dog pens. He brought his clothes in and put in the laundry room utility sink to soak...sounds helpful, right? Well, he put in a BUNCH of laundry detergent, turned the sink on wide open...then went to get a bath! Where was I? Around...trying to fix supper, supervise Philip getting in the bathtub with Daniel, etc. By the time I realized what happened, the laundry room, mud room, art studio, dining room and our bathroom were flooded with soapy water!!! The good news is we have vinyl floors, so they just got a good washing. The only damage was to the baseboards, and they're not that bad, just a little peeling paint in a few places. Praise the Lord!! Kenny arrived home shortly after I discovered the water. The boys greeted him outside with "Don't go in there." I had the rainbow vacuum out and he grabbed the shop vac. It filled both many times with water before we got it all sucked up and the floors dry. Daniel got a lesson on proper detergent usage and NEVER EVER leave the water running in the utility sink.