Saturday, October 30, 2010

Latex Free???

So Every year Matthew likes to make a balloon costume, but this year I thought maybe we'd forgo it as Charlotte is 'allergic' to latex or so we've been told to have latex precautions. no signs of it yet though. Anyway I just think its way ironic that Matthew is a Balloon twister extraordinaire and now can't do it in our own home. But I don't think he can give it up that easy. Stay tuned for the final showing of The Dragon!

Oh and Charlotte has been banned from the pink room for the next few days for fumigation!

Monday, October 25, 2010

Charlotte is 6 Months old

Can you believe my baby is already 6 months old. It's hard to believe. She's getting so big and so much fun to play with. Physical Therapy is just some good scheduled play time!
She really likes going on walks. Mostly cause she gets to take a nap. I"m sure she loves the colors as much as I do.
She really likes the swing too, can't you tell by the look on her face.

Now the bumbo. She's doing great in it and likes to sit and play for a little while. She still tips to the side a lot. We're working on it.
She had her 6 month dr visit this last week and with a clean bill of health she's ready for the 6 next months to come.
Stats for 6 months
Height 26 Inches - 85%
Weight 16.9 lbs - 65%
Head Circumference 17 inches - 85%
Look at her grow! So glad her head is no longer off the charts.
Things shes been doing~
rolling half way over
jabbers all day long
laughs at everything
plays with dolls, rather eats and sucks on the dolls
loves her sister
started having a little bit of stranger anxiety
can hold two toys at once
Brings so much JOY into our home!

Wednesday, October 20, 2010

First Clinic Day

Charlotte and I went to our first Spina Bifida Clinic yesterday. We go the the clinic at DC Children's. It was her 6 month birthday as well! Man I should have took some pictures. I've been a bad picture taker lately. Anyway The drive there almost gave me a heart attack because of the 3 round abouts the GPS lead me into. I will forever love the west for it's sense of grid planning! And to this day the only roads I hate in AZ are the diagonal ones and that is the one I will for sure avoid in DC next time I have to head into the Children's hospital.
Anyway I digress...
We made it 15 minutes early and just got seated and started reading Dracula which I was hoping to Finish for all the 'waiting' I was going to do and got like 2 pages read when Charlotte was called back to 'our' room for the day.

Jill Hill saw us first, she's part of the Spina Bifida Association here in the DC area and she volunteers on Clinic days. She said she just met a new mom of a 4 month old baby boy named Spencer who she had come down and introduce themselves. I got her number and blog so I hope we can get together sometime. They don't live to far from us.

After Jill came my first doctor showed up from Urology. They said what we've been doing is great and to just keep doing it. No changes and would get another urodynamics at a year. So we keep on Cathing her every 3-4 hours and keep up with the Ditropan to help her bladder. Thank you to Lindsay for giving me her unused Catheters!! We were paying for them but since Medicaid should kick in anytime now they will be free but now I can start using one and throwing it out. I really hate having to wash and reuse. Her kidneys look great and NO UTI so far! Hooray!

Next came the Neurosurgeon. They thought she looked great too. Her head felt good, shunt looked good and they checked all her movement and what feeling she had in her legs. and she felt the harder pokes not the soft ones. They said her muscles in her left leg were a little tighter then her right as well. They mentioned her soft spot was getting smaller and soon we'll have to watch for different signs then just a bulging soft spot for shunt failure, downward eyes, fever, nausea, vomiting, unusual crankiness... So far Charlotte is the epitome of Happy Baby so I think if we have a shunt failure I'm going to know if for sure as she's never been unhappy yet! I do have homework and that is to find out what her shunt setting is from our Dr in AZ. I should know that but I don't remember what it was last set at when she got the shunt.

Next came Physical Medicine. They just asked questions about her therapies she's been getting and checked her range of motion all over. They thought she was doing great and said they thought she'd walk with maybe just ankle bracing. I love that everyone thinks she's be able to walk. I just hope the sitting up will come soon and the crawling, scooting will come soon too.

Orthopedics was last. I wasn't as impressed with that part. I guess I didn't get a good vibe from the Dr that came. Anyway the only thing new is that they don't want me to paint her toe nails. As cute as it is, they say it can cause fungus, ingrown toenails, just bad problems with their feet, I think from the lack of feeling they have in their feet. She wants me to get a hip xray next to make sure her hips are in place because of the displasia she had when she was born.
My next visit will probably be in 3 months and we'll see how wonderful she is then as well!

Wednesday, October 13, 2010

Cox Farms

THis was such a fun family fun day! I'm so glad I got the two free tickets otherwise we wouldn't have made it do this fun fall festival. I would love to go back as we didn't even get to see the whole thing. There was a huge volcano that we didn't get too.

Enjoy our family film! Starring Kathryn Olivia Weir and Music by Jeremy Nicoll!

Tuesday, October 12, 2010

Catapiller to Butterfly!

Our friends here told us it was butterfly season and they like to go catch monarch butterfly caterpillars to watch change to the chrysalis, to butterfly so we did the same thing. We got this little guy below.
He then turned in to this green thing. Not what I expected but it was sure pretty. It had little gold specs on it!

On our walks to find some good caterpillars on the Milk Weed we came across this little guy, looks like he's wearing a sweater!

And this HUGE Caterpillar. I couldn't believe the size and how fast this big guy was. My friend called this the Komodo Caterpillar.

Back to our guy. After bring green for about 10 days he turned black.
Then see through .You can now see the wings!

Then this is what we would have got if ours would have lived. It died before it came out of the chrysalis but the neighbors had some that came out and we got pictures with their butterfly's.

It was really tickely!

And we had to get Charlotte with one. Even if she was asleep!

Laughing Baby~!

Here are just a few video of the cute girls I have! CHarlotte laughing and playing with her toys and Kathryn learning new tricks and dancing! I hope you enjoy!

Charlotte has the greatest laugh! I love it when we can get her going!

Kathryn learned this the other day. She's starting or has been jealous of my play time with CHarlotte on the floor so she has to climb all over me and has now learned she can do flips off my bum. I think this is funny and yes I'm secure enough to show my big bum on film!

Monday, October 11, 2010

Spina Bifida Awareness Month

This month must be the Month for Awareness! Breast Cancer, Health, Spina Bifida... Well I've been wanting to do something or write something about Spina Bifida and haven't come up with anything brilliant or anything I think would help with awareness. What ever that means, awareness. Do I want people to just know that I have a cute, precious baby with Spina Bifida or do I want them to know about what it is or how to prevent it or what???

I came across this blog post that I'm going to put here that puts into words what I feel should be what Awareness should be. two things. #1 women of child bearing years should be taking a folic acid all the time, not just when trying for a baby, most births are unplanned anyway, and #2 That if you are one of the 1 in 1000 that happen to find out you are going to have a baby with Spina Bifida that when the Doctor gives you the choice of termination, that you will laugh and say why would I do such a thing to a child that is going to knock your socks off with the things he's going to do to beat 'your' odds! Charlotte is perfect, yeah so what if I have to cath her 5 times a day and I have to make sure her head doesn't start to swell or that she's not as strong as the average 5 month old but she can smile and laugh and likes it when her sister plays with her. She brings such a joy into our family I wouldn't want it any other way. I gave her all I could to make sure she could have the best quality of life and now I'm doing all I can to keep up with that! I really believe she will lack for nothing in regards to happiness and a FULL LIFE!

This post came from Choo Choo's and Tutu's, Nate the greats mom! For the full post with pictures click HERE

For the last week, I've been thinking I need to write something about October being Spina Bifida Awareness Month, but I've just been mulling this around in my head. I'm always asking myself and others "What's the point?" What is the goal of this SBAK class we're doing? What do we want to accomplish with this mailing? What outcomes do we want to see from this event? And that's what I've been struggling with: What's the point of Spina Bifida Awareness month?I've never completely understood awareness ribbons. Breast cancer awareness--Who is NOT aware that breast cancer exists now? What's the real purpose? To me, it seems the purpose is to make us women aware that we need to do self breast exams and get checked out by our docs from time to time. Okay, that's a worthy goal, but is that the clear message we hear this month? And Autism ... well, the awareness campaigns have been pretty successful, I guess. Every time I see one of those puzzle clings on someone's car, I see another person affected. But again, what is the point of this awareness?

Every now and then I see a Spina Bifida Awareness ribbon or car cling, and I've actually never been a fan. To me, that just says, "Hey! Look at me! My kid has Spina Bifida!" So? Is that what I want everyone who passes my car to know about me and my kid? How does that help anything? (To be fair, probably the only reason I don't have one of those ribbons on my car is because they're not easy to find. I wouldn't go online looking for one to order, but if someone was selling them in front of me, I'm sure I'd buy one.) I have bought a bracelet that says "Spina Bifida Awareness--Hope." And I've just bought some awesome T-shirts that say "Redefining Spina Bifida." Those are clearer messages to me. (Okay, it's totally becoming apparent that I was a communications major.)So tonight I finally sorted it out in my head. For me, there are two great things that can come from Spina Bifida Awareness Month. For others there might be other goals, such as advocacy for their children.

But these are the two that stand out to me:1. To make all women of childbearing age *aware* that they need to be taking their vitamins BEFORE getting pregnant. And since about half of all pregnancies are unplanned (60% in Kentucky, fyi), that means all of us should be taking a multivitamin or prenatal to help prevent birth defects by up to 70%. (Preaching to myself here too.) Some people say they eat a healthy diet, so that's good enough. Uh-uh. Did you know you'd have to eat 14 cups of broccoli, or drink 8 cups of orange juice, or eat 200 medium red apples EVERY DAY to get enough folic acid? Honey, just take the pill and get it over with.I'm going to be honest, I know this is an important goal simply because most people really are unaware, but this has never been my fire. I do work health fairs and explain all this to women, but it's sort of beside the point for me. And I know it's because I was taking 1mg of folic acid 4 months prior to getting pregnant, and it still happened. I also know it happened for a reason.

2. The other goal I see as important for SB Awareness Month is to let women know that if they find out their unborn baby has Spina Bifida, there is no reason to terminate that pregnancy. This is my fire.I totally understand that overwhelming fear, because I was there too. I also wished the "problem" would just go away. I also got bad news ... The most severe form of Spina Bifida. L2--higher than average. Arnold Chiari Malformation and hydrocephalus. It was terrifying. I chose to trust God. I knew He doesn't make mistakes, and if He gave this child to me, He was going to help me raise him. And I don't want to sound like a crazy person, but He told me so. I heard Him. Not audibly, but very clearly.And this is what I got:

A handsome! ...

silly ...

train-loving ...

outgoing ...

stubborn ...

Did I mention train-loving? He really, really loves trains ...

brave ...

HAPPY! ...

running! ...

fun-loving ...

Daddy's boy ...

totally adored ...

musically gifted (That's right, I said it! He's gifted!) ...

hard-working ...

Does that look like a boy who has a poor quality of life to you? Does he look sad, or sick, or disabled?
Some might say, "Well, sure, but he's an exception." No, not really. It's true--Nate does not have a whole lot of medical issues. I know some kids who have fewer issues than Nate, and some who have more. But you know what? I think all of us think our kid is the exception. We all consider our kids miracles, and they ARE because we gave them the chance to be. Not because we're any braver or stronger or more patient or better parents than anyone else, but only by the grace of God.

Another superwomen of a mom of the cutest little boy is doing an awesome awareness feature on her blog. She is featuring a different kid with Spina Bifida each day of the month. And she got such good feed back she's now featuring two kids a month. Charlotte was featured on October 9th. Please please check out her blog and see all these precious kids all thriving and living life to the fullest, and knocking the socks off of all their doctors! Here's the link for just Charlotte . You'll get sucked in with finding more about all these wonderful kids. I sure do. I have to limit my time with each one!

Monday, October 4, 2010

Pictures of Charlotte

So I haven't posted much about Charlotte Lately, She's getting so big! And it's getting colder out finally so I've got to find me some warm clothes for my little pumpkin. This little jacket is a bit snug around her big belly.

I LOVE this SMILE. I get it all the time!

She really loves her bath time too!

The dreaded tummy time! She's doing good but it still makes her mad after a little bit.
Her PT is going well. I wish I new how much or how little to do. Every night I think back and think, was she on her back to much or did I help strengthen her legs enough? Did I have her sitting up enough? I guess I'm doing good but maybe each day I'll try to be more then good. Charlotte's head is not so bobble head like and sit's pretty good propped up on the couch so She's definitely getting more of what she needs.
Appt's this month: Physical Therapy, Developmental Therapy, Ophthalmology, Spina Bifida Clinic and her 6 month Pediatrician appointment!

Saturday, October 2, 2010

Deven and Kathryn

I think this post is mostly for Kathryn's sake. When she's feeling she wants to see her cousins I can open this up and let her have fun looking at the fun she had with Deven.
One of Kathryn's favorite things to play with is her little dog bank. She likes to take the money out and pretend the dog is pooping 'money'. She laughs histarically if I do it for her.
Yes she's wearing her panties. She has some good days and some bad days. Still a diaper girl though. I think she likes the novelty of wearing panties just not the responsiblity behind it. She said today after peeing on the floor that she would have missed Boo! if she had gone to the bathroom. Boo! is her favorite cartoon.

Deven was such a joy to have here. I wish we lived closer to any family. Kathryn has so much fun with her cousins.
Dogpile on mommy! See Kathryn squished in the middle there!

Deven was really good with Charlotte too.

Thanks for visiting with us Deven. You come back anytime too.

30, flirty and Thriving

Well Minus the flirty part, that's me. I turned 30 last month on the 7th and I'm still thriving. Some days it's a lagging thrive but I'm still going strong. I'm not sure what I thought I'd be doing at 30 when I was a kid but I think I've grown a lot and learned a lot and I for sure have the most beautiful little girls and wonderful husband that loves me.
Jolene made the birthday cake and watched the kids while Matthew and I went to dinner at a vietnamese resturant. She let the Kathryn and her son Deven help with the decorating. Sprinkles galore!
No there are not 30 candles but they are in the shape of a 3 and 0. Kathryn had fun telling me Happy Birthday all day.

For my birthday as well Jolene took us to the Mall and Got me a pedicure while she watched the kids play at the kids play ground at the mall. Kathryn got all upset so I had her come sit by me and she got a chair message and they even painted her toes. I think she's hooked. Do you think I started her a little to young for this kind of thing? I didn't get my first pedicure till I was in my 20's.

Kathryn picked Purple for us! She sure loves her nails polished.

Here's to the next 30 years!
And I am not middle aged!

Tour of the Capital Building

So if that stinking fence wasn't there I'd say I just took my very first professional Postcard picture. I love this picture. The last of the day and it was the best one!

I'm amazed at the detail in these buildings. I can not imagine how hard and long it took to build such a masterpiece.

This was in one of the old meeting rooms for the House but is no longer big enough. This room has such great acoustics that you can stand in one spot of the room and you can hear perfectly what someone is saying in a whisper on the other side of this room. It was fun to think about people eavesdropping on other representatives. when they used th room.

The Ceiling of the Center dome!
Painting around one of the big domes.

Lady Liberty. A smaller version of what is on the top of the capital itself.

We went on Labor day so the house and the Senate sides of the capital were closed for the holiday. I would love to come back and see those sides. I guess I can add that to my list of things to do before we leave this historic part of the country.

Monuments by Moonlight

Thanks to Jolene when she came to visit a month ago... Man I am late on my blogging. Anyway Thanks to Jolene we did a tour that we would not have done and I'm really glad that We did. We got a babysitter for the kids and yes I even left Charlotte. Scary, I've never left her with anyone but my mom. Melanie did a great job and Kathryn was asleep before we even got home. Props to her as I can't even get her to go to sleep...

Here is the tour backwards. We ended at the White House. or Yellow house. Matthew says its because of my shirt that the white house is yellow! ha ha

Vietnam Memorial. I love this memorial. I think it's because my dad could have been called into this war but didn't. He has many friends that are on this wall.
Korean Way Memorial. This one I don't remember from my visit years and years ago. It was quite spooky looking at this statues.

Lincoln Memorial. This has to be my favorite memorial of them all. Dang picture is fuzzy.
Iwo Jima. This is one that I think gets passed over a lot as it is quite far from the capital mall. I'm glad the tour took us to this one.

The Washington Monument. I got a ton of pictures of this one but this one was one of my favorites.

Jefferson Memorial. I wish I new more about this Man. This monument is amazing as all of them are.

The Capital Building. We did a tour of this the next morning so I have better pictures of this to come.

Ji and my Love, Matthew

Jolene and Me on the trolley.

Thank you Jolene for having so many activities to enjoy while you were here! You can come back anytime!

Matthew had me run up the stops of the Jefferson Memorial and he sang the rocky song. He's so silly! but we sure have fun.