Charlotte Turned Terrible oh I mean two!

We had playgroup on Charlotte's birthday so I brought Cupcakes for all the little ones.   These first two pictures are of her when we're singing Happy Birthday to her.  For some reason she was really shy about it. 

 Here is the opening of presents that evening.  Kathryn picked out a cute little Mommy horse and baby horse for her from the dollar store.  She really likes horses these days.

 I tried a new pinterest idea out for her birthday cake.  We did birthday cake waffles with ice cream and whip cream.  They were actually really yummy.    We lite the candles for her and started singing and before we ended she tried to touch the candles and got burned.   Next time Either I hope we're faster at stopping her or she learned her lesson.

 I was recommended to get her some play dough with the tools that go with them.  I still need a little rolling pin.  But SHE LOVES the PLAY DOUGH.  She asks everyday to play with play dough.  She's getting better at manipulating it and now really likes to make holes in it with  a pencil or crayon.  She usually asks for play dough and after that's out she asks for a crayon. 

 Isn't that shirt she's wearing cute.  It's on that Carolin got her for her birthday.  I had her hair back in two little ponies, she looked like a little farmer that day.  Adorable. 

I can't believe it's been two years.   She's grown up so fast.  Her vocabulary is growing in leaps and bounds.    She's trying to copy me for saying prayers.  It's so cute to hear her say things like thankful and Jesus. 

She's outgrown her braces.  Luckily they were able to just add to them to make them a little longer for her toes.  I don't think insurance would pay for another set after just 6 months.   I guess once she's been up and using her feet they now think they can grow. 

She loves to walk.  She doesn't like being in her stroller at all.  She likes doing that game 1,2,3 Jump with Matthew and I but she usually just says 3 and drops her legs thinking we'll jump her. 

Some Favorites of hers these days are play dough, walking, dollies, horses, Caiou, Kipper, books, riding on dads back like a horsey, hot dogs, gummies(fruit snacks), cheese, grapes, outside, chalk, doggies!

 How did my little baby with spina bifida grow from this below, to this strong, independent, beautiful little girl !

Charlotte's getting around

Charlotte has really become proficient with her walker.  She's getting so strong.  She can almost run with the walker.   I've taken her to the store and she walked the whole time.   I do have to go when I don't have anywhere to be, because she gets distracted easy and since I can't hold her hand, it's really all up to her.  with a little guidence...

Her vocabulary has also sky rocketed.  Two months ago her developmental Therapist said she was maybe a little behind but now this month she's ahead of the game.   She almost always says she doesn't really need to come but keeps track of the all over picture for Charlotte.   I think she wants to keep Charlotte as a client cause she's so cute and easy!

She's even starting to say multiple word sentences.  

That's mine.  Hold you.   Carolin, Daddy's tickling me.

Her favorite foods right now are string cheese and hot dogs and Cherrios.  She usually wakes up and the first thing out of her mouth is Hot Dog,  or Cherrios!  I like the Cherrios.  Not so much the Hot dog part.

She turns 2 this month.  I can't believe I was in San Fransico 2 years ago.  It seems like forever ago.    Charlotte is such a delight to have in our family.  She brightens everyones day.  Always so happy.  Everyone loves our Charlotte.  Matthew says she's really the only talker in her nursery class at church.  She also know's that after sacrement meeting is over she goes straight to nursery.  She walks right on over with her walker.

Oh I have to mention she LOVES babies! She can make them smile! They all love her too. She's so good with them.

Last years Easter picture.   Heres our beautiful Easter bunny!    Happy Easter everyone!

One Step at a Time

For Physical Therapy last week we worked on a few things on the floor like crawling over my legs and getting up to her knee's but she's a pro at those things so Miss Jean decided to see if she could do stairs. for only the few times that we tried with Charlotte she really got the hang of it. Now I'm not surprised if I see her on the bottom landing banging on the first step. And take a look at those legs all straight like she's going to start standing soon. She is getting into everything. I love it! Can't believe I say that but I do I love it! She's doing normal things like getting in to cupboards and crawling around the circle of our kitchen to family room. Getting in to the bathroom at any chance she gets. pulling out all the toys from the toy box. She's just so normal right now. You can't even tell anything is wrong with her legs sometimes. She's just more flexible then most.

Anyway I hope you enjoy this little video. And well there will be more to come soon, I'm sure of it.

Charlotte Progess and a Hooray for Kathryn

I've been so proud of Charlotte lately! She's gotten so big in the last month. Our visit to CHOP was May 15 and she wasn't even crawling well. Just started army crawling and now she's up on her hands and knee's pulling to her knee's at every thing and playing with everything and getting into all my cupboards. Seems like her favorite place is the bathroom. And then onto the kitchen to play with all the cookie pans under the oven. I'm so enjoying her mobility how it is and not working as hard as I could be on helping her learn to walk and stand. But I know she can stand, well, for a few seconds anyway.

At PT on Wednesday we worked on going up the first step on the stairs landing and she did it almost all by herself by the 4-5 time. She did it again today with just a little encouragement. I may need to invest in a baby gate or two.

I just love watching her get into things and be a little mess maker every where she goes. playing with one set of toys and then onto another area.

One of the goals that we made for her 8 months ago was to have her move independently across the floor to play with her sister or the play kitchen and be able to play at it for 5 or more minutes. She is definitely doing that. and that was her 18 month goal. She's 14 months now.

I just read some posts from a friend Jamie, who had people send her emails and such about what doctors told them their little ones with SB won't or will not be able to do and are now doing that and much more. It was an awesome reminder of all of our abilities. I also looked back and I don' t think any of the doctors have said anything real negative about Charlotte's abilities. It was all mostly things like, 'you'll just have to wait and see' and ' every one's different' . From the time she was born they've all said she'd for sure walk.

She's so on track. Oh I almost forgot. She's also saying a few words. Mom, Hello, and Uh-Oh. Love it!

And Kathryn

SHE GOT EXCEPTED INTO PRESCHOOL!!!!!

We don't know if she'll be morning or afternoon but she's in! I'm so happy for her. She's going to love it!

Visual or not

I just read a blog post of one of my friends back in az that has a baby who is hearing impaired/ deaf for all purposes of the word. He has hearing aids and just got tubes put in his ears so she knows that people SEE he is different. She said she was glad to have a visual disablilty compared to one that people can't SEE. It made me think about Charlotte and how she really doesn't look different then any other little 13 month old. She's cute as can be and can now get around crawling. But She does have Spina Bifida.

Ok stop I don't know where I'm going with this.

1. Would I rather have a child that is visually disabled so that I get more empathy or people feeling sorry for me
or
2. Would I have it how it is and have a perfectly wonderful child that no one knows the difference and I'm treated the same everyday until they see her back or see that I change her diaper differently or just until something comes up and then have them ask questions.

I think part of me likes the empathy and the wow you must be an amazing person to care for a child with a disability. I got so many comments when I was pregnant with her about how I must be amazing as our Father in Heaven wouldn't send such a spirit into my life if I couldn't handle it. I liked feeling like maybe I had more purpose then.

Now no one knows us out here expect out ward family and even some of them and the new people don't know anything about our story and they just treat us like everyone else. So I don't have to explain whats wrong or anything cause she looks completely normal.

Sitting in the grocery cart she gets more ooo's How Cute your baby is then anyone. And I have so much pride in that. She's sitting up, holding her self up, smiling at all the people. Interacting with the world. She's perfect!

I don't know where I was going with this post but my friends post made an impact on me and well I was thinking about it and thought I'd try to get some thing written down about it. I haven't put much depth into my posts lately.

Anyway Charlotte is doing great. She's got a summer cold right now but other then that she's my getting into things, crawling, pulling to her knee's little girl!

SB Bowling and Swimming

This past weekend we had the Spina Bifida Bowling Party. It was on an Army base here in VA. They had the lights out and black lights on and disco balls going. It was fun. We had pizza and drinks and Even Kathryn got to bowl and get of the ever so awesome bowling shoes. She had lots of fun. Charlotte liked all the flashing lights and tried getting them on the floor.

Maybe next year Charlotte will be old enough to help push the ball down the ramp!

Kathryn has really been wanting to go swimming so I cleaned out the turtle and filled it up with the hose water. Charlotte really liked it but Kathryn well not so much. She could tell it was way to cold but they had fun anyway.

Kathryn liked splashing but was always just getting Charlotte. Not cool for the one getting splashed but Kathryn was having a ball!

And here Charlotte was on the floor and then I look back and she's up on her knee's! She's done it a couple times since then. She sure is growing up. So much progress in just a short time. I love it!

MOMS Trail over with great results!

My day has been full of reading articles and watching clips about the trial Charlotte and I were apart of at her birth.

Here are a few of the articles I've read n an watched.

New York Times

New England Journal of Medicine

NPR

another NPR

Diane Sawyer

Brian Williams MSNBC

I am over joyed that we got picked for the prenatal surgery. I knew that we did the right thing for her from the start. I wanted to do what I could for her and well I guess what we did actually was the best thing.

The trial was closed early because the benefits were clear it helped with Mobility and brain function. We were told that from the MRI we had before we excepted to be part of the trial that CHarlotte's hindbrain herniation was quite severe. That was probably the clencher for me. That part scared me more then the possible need for a shunt. And because of the surgery before, I'm sure that hindbrain herniation has reversed. and for CHarlotte the SHunt was still needed. So the main scare in my book was gone. When she was born she was kicking her legs and wiggling her toes too. I was overjoyed.

We delivered at 36 weeks 4 days. We actually had our c-section scheduled. The gal right after us delivered at the same time a month later. So there are still those of us that do not have premature babies. I knew that part of the risk was not a problem for us. I knew my body could handle it and each week I didn't deliver was a blessing in Charlottes life.

We go do CHOP for our 1 year Eval in May. I can't wait to show off our little Charlotte Bee.

And what a blessing this is for all those moms out there that there is a better option for those SB kids. I hope that the option doctors give now is not termination it's prenatal surgery!