Wednesday, March 31, 2010

The words we use

So I follow a lot of blogs now of mom's with kids that have Spina Bifida and I am so amazed at their strength and knowledge. This video is a CNN new's article from a women who was born with no fibula bones and is now a model, actress and sports athlete. 'You just don't look disabled'
She talks about the word DISABLED and what it means. What the dictionary says that it means.

This is from the blog where I found the video.


Part of Speech: adjective

Definition: incapacitated

Synonyms: broken-down, confined, decrepit, disarmed, handicapped, helpless, lame hurt,incapable, infirm, laid-up, maimed, out-of-action, out-of-commission, paralyzed,powerless, run-down, sidelined, stalled, weakened, worn-out, wounded, wrecked

Antonyms: able, healthy

I have a request from all my family and friends that when you met Charlotte for the first time and down the road, that you won't feel sorry for her or my family or think of her as being disabled. Matthew and I are set on giving her the best opportunities we can and helping her know that she can do anything she sets her mind to. She will be strong, healthy, fully capable of life and living well! She will not be any of those synonyms above. She will be first and for most a Daughter of our Heavenly Father, and to take from a previous post I made I am totally Confident in her Creation! Our Heavenly Father wouldn't send us someone that was disabled by these terms. He sent us His child to love and to care for. And we WILL!!!!

Tuesday, March 30, 2010

What happens after Charlotte arrives

I got a good question from my Sister in Law Micah. She wanted to know what happens after Charlotte arrives. Well that question is kind of hard to answer with a case like Spina Bifida.

Things that could be something we have to worry about
1. Hydrocephalus - Water on the brain- this is what we hope won't happen because of having surgery early but still could be an issue.
1.a This they will watch for while she's in the NICU for the first 2 weeks. See if she's eating and breathing fine on her own and if she is irritable or not. those things can be the need of a shunt.

2. bowel/ bladder problems - in the NICU they will Cathe Charlotte for the first 48 hours and then stop. We will learn how to do it as we may have to cathe her for the rest of her life. After she is discharged from the hospital we will have a Urology appointment to find out what her bladder looks like and see if cathing is actually necessary.

3. Mobilization - She may or may not be partially paralyzed from the point of her lesion down. We won't know her mobility until she is older.

4. Latex allergy - No more balloons for us. She has a higher chance of having a latex allergy so all doctor visits have to be latex free.

5. Arnold Chiari Malformation - This one is also hoped to be reversed because of the surgery. This is when the brain is actually being sucked down the spinal column therefore causing the hydrocephalus. If this is bad I've been told she will have to have surgery to release the pressure in her head.

But all those things are things we can't assume will or will not happen. That is why so many moms of kids with SB say that the pregnancy is the worst because of all the unknowns. But that once your little baby arrives all that seems to just be something that you do. You still have a little baby that needs lots of love and kisses and will enjoy everything another baby would enjoy.
I feel so at peace about this little angel coming to our home that I know that the bad things that could happen won't. I just hope we can make it to the 37 week mark for her benefit.

So time line for any one interested.

1. 37 weeks exactly is April 22nd
2. I will be in the hospital for 4 days because of the C-Section
3. Charlotte will be in the NICU for 2 weeks for monitoring and such to be sure she won't need any further care before we come home. She has to be 14 days old to fly home anyway.
4. the Day after we're discharged we have the urology appointment
5. depending on the time of that appt we come home that day or the next morning!

So max baring no other complications we come home May 10th!!!

Micah I hope that answered your questions or maybe I gave to much info. anyway that is what we can expect might happen.


Sunday, March 28, 2010

33 weeks 3 days

From all the fun I had with my little Kathryn, we had a little scare at my next appointment the next Monday. My Ultrasound showed a fluid level of 8 when the week before it was at a 19. They told me it is still in a safe range and not to worry, just to 'take it easy' and drink more water. I did both. I've been having Matthew wheel me in the wheelchair more, which I hate cause it hurts my back. But I did and then the following Thursday at my BPP testing my fluid was back up to a 16. So no hospitalization for me. If it had gotten to a 5 they would hospitalize me. I sure don't want to be stuck in a hospital for any time besides having this baby. I hate hospitals.

I've now talked with two other mom's that had the fetal surgery and both of them had to go in because of low amniotic fluid. I need to ask the nurses if that is the main reason people go in early.

I have 3 weeks 5 days left to 37 weeks exactly. I CAN DO IT!

I have some things I want to finish while I'm not able to do a lot like finish my book and finish another one that I found in the library that looks really good and finish typing up the letters my mom has sent me.

So far so good.

Tuesday, March 23, 2010

Muir Woods

Our last day with Kathryn was spent walking around the Muir Woods. Famous for the filming spot of Return of the Jedi where the Ewoks live.

It was beautiful! The redwoods there were amazing. I loved every moment except for the fact that my back hurt most of the time. It was still so amazing to be out in such a wonderful place. How can anyone say there is no God in a place like that. That could not have been an accident.

Kathryn was a cutie in there too. My little Ewok. She was so determined to walk all by herself. So many people had to do a double take on our little cutie.

There was one section called I think the Quiet Cathedral. It was so quite. Couldn't hear a thing. Which was amazing as there was a stream right next to us. The tree's must have just stopped everything.

Kathryn fell asleep before we even got out of the park. Then slept all the way home as well. I got to play with her all afternoon. She was such a joy. Everyone here at the family house adored her. She loved playing with one of the kids here Kristian.

My mom and she left that night. It was so sad to see them go but I could tell I was getting more worn out then I should have.

We only have one more month and Skype will have to do!

I hope you enjoyed our little week with Kathryn I sure did!

Pier 39 and St Patty's Day!

On Wednesday we took the train and a trolley to Pier 39. We got to see the Sea Lions and ride the carousel. Kathryn loved the carousel. She wanted to go over and over again on different animals. She really wanted the black horse and as soon as it ended she said she wanted to ride the bunny right next to her. We only had enough for one ride so she was a little disappointed.

We stopped at a Crazy hat store and did our only celebrating of St Patrick's Day. The hats were fun. We got Kathryn a little dog in a carrier. She found these and went to town picking them all up and walking around the store like she was the owner of all these cutie little puppies.

We ate at a wonderful place were my mom and I got the clam chowder in a bread bowl. SO YUMMY! This time Kathryn didn't fall asleep on the way home. She liked being on the train way to much.

I have really wanted to get to Ghiradelli (sp) Square but Matthew won't let me as I'm the diabetic who gets an increase in my insulin every week. Maybe he'll let me go someday before we leave.

I still can't get over how fun it is to watch and see how Kathryn has grown in the last month and a half. It amazes me the things she knows. I like to sing to her 'You are my Sunshine' and while here she finally realized that I was calling her My Sunshine. She'd get her face all scrunched up and say 'I'm your sunshine" and laugh with me. So adorable. I hope she doesn't' mind if I sing that song to Charlotte cause they will both be my Sunshine's!!

California Academy of Sciences and the Beach!

Tuesday we went to the Academy of Sciences. Kathryn loved all the fish and the kids play area. It's amazing the amount of different ocean fish/animals there are. They had an Anaconda and an Albino Alligator. We got to touch some of the star fish too. Kathryn wouldn't touch any of them. I should have sat in the wheel chair more that day. Well I should have sat in it more all week.

My mom I think had more fun and was fascinated by more of the animals then the rest of us were. She said she likes going to places like that on her own so that she doesn't have to keep up with those of us who just look and pass by and not really look and take in all there is to see.

Kathryn got kind of cranky by the end so we didn't end up going in the rain forest part or to see the planetarium. She fell asleep again on the way home. After naps we went to the beach before dinner. I think this was Kathryn's favorite part of the trip. She got to chase the water back to the ocean with Matthew and then get chased by the water over and over.

This beach had an over abundance of sand dollars everywhere. Mostly all broken into pieces but my mom found one whole one and I found one with just a little hole on top.

Kathryn also just loved playing in the sand. I think it reminded her of the little sand box at grandmas. I told the Doc on Monday that I thought this was her favorite part because of it being the biggest Sand box she'd ever seen!! He laughed and laughed at this.

The beach is so nice to just walk down. It is really hard for me to walk back out of the sand though. Wears me out just thinking about it. But I love going and just listening to the waves and watching the sun go down.

Each day was a new adventure with Kathryn. I loved every moment. I just wish it could have been a little longer.

Golden Gate Park with Kathryn

Our first outing for fun with Kathryn was to Golden Gate park to meet up with my Cousins Katie and John. We walked for a really long time throughout the Botanical Gardens. It is so beautiful here. Kathryn had so much fun that she actually fell asleep on the way back to the house. It was so fun to see her run and play and enjoy the out doors. I wish I could keep up with her. Soon enough I'll get all my strength back and I'll be running circles with her.

It was really nice to see John and Katie. I haven't seen them for years. They have been doing good here in San Fran and even said their relationship has grown better and better the last year or so. They sure looked happy!

Each day Kathryn was here we did something fun. This was Monday, my appointment day so it was just a walk around the gardens but it was worth it. We all went to my ultrasound and I had hoped Kathryn would enjoy seeing her baby sister. but She just sat there and didn't really understand. I think though by the end of the week she new her baby sister would be Charlotte as she would say her name and point to my tummy.

Another post soon about our adventures on Tuesday!

Thursday, March 11, 2010

Just me again

So I'm 31 weeks today. Hooray for making into the 30 week range! Anything goes now! we'll wait another 5 weeks to have her though well that's my hope.

I still have appointments all day Mondays and now next week I have to start having the BPP testing m(stress test on the baby) twice a week. Monday and Thursday's are my days at the doctors office.

They keep uping my insulin for fasting and breakfast, we might get it right someday.

We're in the new room here at the family house so that we have room for my mom and kathryn to come this Saturday!! Hooray!! It's the nicest room on the 3rd floor for sure. I don't know if I'll want to give it up after they leave. but we don't need a room with 3 beds and a really nice closet...

We haven't been doing much lately. Matthew has a deadline to meet for Monday and has been working hard so I don't get to go out without him. I've been reading a series of the Enchanted Forest. It's a fun book that I've been picking out one of the smaller characters and telling Matthew the story from that perspective instead of the main character. It's fun since the last book's character was a rabbit that turned into a 6 foot rabbit, that turned into a 7 ft donkey that turned blue, then grew wings then floated above the floor 6 inches then became insubstanial back to a regular rabbit throughout the book. Interesting stuff. This last book I picked a little gold lizard named Suz. who likes to stand on his tail and can tell if your lieing or telling the truth.

I've also been sleeping a lot which makes it hard to want to sleep at night. I need a happy medium here. maybe try shorter naps..

I've also been typeing up some letters that my mom sent over that she had written to her parents. It's intersting the types of things I'm learning about my mom when there were just 4 of us girls around. I was the best baby... ha ha I also got to type up the letter that my dad sent to my mom's parents to ask permission to marry her. Matthew had a hayday with this one cause my dad sent the letter after he had proposed and my dad gave Matthew a hard time cause he didn't talk with my dad until after he had proposed to me and not before.

Everything looks good so far with the baby and myself. Everyone is still impressed with how I'm doing and how things are going for us.

well this is too long and I have no new pictures to post so next time I'll be ready for some new pictures. hope this wasn't to boring of a read if you actually got through it.

Friday, March 5, 2010

Pregnant Belly

We went to the beach last night for just a few minutes as it was really cold and windy but I had to get some pictures of how BIG I'm getting. And a good sunset shot! I love the new camera!!
I'm 30 weeks along. I guess the jacket doesn't do this justice cause I am in fact quite large. THis will have to do for now.

Wednesday, March 3, 2010

"Be Confident in Your Creation"

I was just blog hopping and came across this post about a book called "Be Confident in Your Creation." I first read a post about a lady who has a 9 month old with SB who is feeling bad about the so called milestones that a normal 9 month old should have and they are not there yet. How people ask how old she is and say things like oh she'll be running around the house soon or she must be crawling all over and yet she's not close to either of those things.

It got me thinking about how I'm going to handle a child that may be slower in her learning. Kathryn is getting so smart and so fast. I've been gone only a month and I can tell she's learned a ton more in the last month then before. What is it going to be like to have a child that may be developmentally slower then her sister. How will I cope with people asking what she is doing at this age. and have to answer with a head nod or nothing at all. SB is such a different type of problem that I'm sure I won't want to go into all the in's and out's with everyone that we meet.

I know I have months before any of that happens. It's just the last few posts I've read just got me thinking about how I feel know and how it will feel later on.

One person who recommended the book below said she felt guilt the first 3 years, like it was all her fault. It was her job for 9 months to care and nourish the baby and yet something did in fact still go wrong. God was not to blame but her because she couldn't provide what that baby needed. I don't feel guilt at all and I don't blame God for any of this. Mostly I am grateful that she will still have a life to live. She'll be able to grow up and learn and have a job and get married. She'll have a loving family all around her. I'm just grateful that I can give her that love and care that she will need. I know it's going to be hard but who said motherhood wasn't. I'm grateful to the MOM's study to allow us to maybe help one of the aspects of SB that she won't have to go through. Even though I complain and feel sore and want to be home and miss my little Kathryn I know we're made the best choice that we could have for this little angel that kicks me all the time. Every kick reminds me that she has some mobility and that she's still there ready to join the world to be loved by her parents and family.

I found this scripture on the post with the book recommendation. I think I need to ponder and pray about this and really know that we are all God's creations even those with disabilities.

Psalm 139:13-14 For you formed my inward parts; you knitted me together in my mother's womb I praise you, for I am fearfully and wonderfully made Wonderful are your works; my soul knows it well.

Below is an excerpt from the book.
"Did you realize that you are the work of the only true God? The One God who formed and created all heaven and earth and the same God who only has power to rule all creation is the same God who took the time and care to mold you as a potter molds the clay! This fact should make you jump out of your seat and praise God for your creation. You are the possession of the King of Kings and Lord of Lords. Perhaps some perspective will help you wrap your brain around your personal value. The price of a well-made quality guitar can range anywhere from $250.00 to $1,000.00. Now you take that same guitar and have a big name country music star sign the guitar all of a sudden, the value of that guitar skyrockets. The personal signature of an important person adds to the value of the object. You have the signature of God in your life. If the signature of a country music star can add to the value of a guitar, how much more would you say the signature of God adds to your value? You are priceless because God created your personally and left His fingerprint of expression."

I know God lives and that he love each and everyone of us. He doesn't do things by mistake or to just make our lives hard. He does things to make our lives better and to learn from the challenges that He throws our way.

Great afternoon to me for finding these posts to make me think more deeply about my feelings and gratitude for my baby.

3.6 mile walk to a theater

Last Friday we decided to go see Percy Jackson, the Lightning Thief and the closest theater is 3.6 miles away from us. So Matthew felt like getting a lot of exercise so we walked, well I walked a mile of it and then Matthew pushed me the rest of the way. Which is saying a ton cause it's not very flat here in San Francisco. But we got some cool pictures along the way.

This is from the 7th floor of the theater. Yep this was a 12 story theater. Every 3 floors there was 4 theaters. Crazy huh. My first multi-level theater.

Which one is me, ha ha

This house was just awesome. Gold and very shiny. This picture doesn't do it justice but well just know it was cool!

Matthew really likes this house/office building. He says he wants one like this with the rock on the outside so he can rock climb the walls. I'm totally ok with that!

This was just a really awesome tree. I love all the greenery here and foliage. It's beautiful.

I window into another world. or just the place where swamp thing lives.

Some more pretty flowers and foliage along the road.

This was a really long walk for both of us. I know I couldn't have walked the whole way but being pushed in a wheelchair isn't that much better. especially with all the bumpy sidewalks. The only smooth sidewalk we've found here is over by the piers. We went there last night for dinner. Well I hope you enjoy the pictures and I'll try to take a bunch more of how pretty this place really is.

More Food

Some more of our food experiences. I haven't been taking pictures like I would like but here are a few to enjoy. These top 4 are from a place called the Rice Bowl. Yummy Chinese. The second Chinese place we've stopped into and the best of the two by far.

Pork Fried Rice

And here's Matthew enjoying the Chinese chips and sweet and sour sauce. I tried a couple times to get him to have a good face but this is all I could get. Eyes closed and everything.

The one and only Mexican place we've been to in the area, La Fonda. Wasn't bad but not my favorite by far. I need a great chimichanga and we'll be set!

Ok so this is now one of our most favorite places to eat. They have great Sandwiches which they call so greatly space names like Lunar Dip and Celestial Chicken... But they also have this great Salad bar that you get to choose up to 7 things to add to your salad. So good now that I really have to watch what I eat.

My first Salad, this one is the Small Salad! Oh and I didn't get a picture but they have the best macaroni and cheese on the planet!

Then Matthew's first salad attempt. He got a Large salad with the potatoes.

This place has great burgers, pasta and Matthew loves the Pizza here. I'm not that big of a fan of this pizza but the rest of the menu is great. We even tried their Fried Calamari once here. SO GOOD!

We've been to two Gyro places so far and this place has the best hummus and pita but the other place has the better gyro's. I think if they would actually put the gyro in the pita and not the tortilla type bread they would be fantastic!

Well that's it for food right now. We did find a grocery store within walking distance finally. So I have some better things to eat for breakfast. So far so good on the blood sugars for breakfast.