What's Wrong With Cade?

I have never explained very well on the blog Cade's diagnosis. I always just say he has a chromosome 6p deletion and people just nod their heads and pretend to know what I'm talking about and I'm OK with that because it's confusing. This may be boring for you if you have ever had a genetics class but I'm going to attempt to explain Cade to those of you that remain confused.
There are 46 chromosomes that make up the DNA of a human and they are divided into 23 pairs. The pairs come from inheriting one from your mom and one from your dad. There are many things that can go wrong with replication as your cells divide as you are being made. There can be deletions, duplications, inversions, translocations and the list goes on and on. In Downs Syndrome there is a duplication, or trisomy, of the 21st chromosome. In Cade's case, when his little cells were dividing, a little piece was left out, or deleted, off his 6th chromosome. Because Shane and I have no evidence of this deletion, it was just a freak occurrence, or de novo, we are no more likely than the average person to have a child like this again. Below is a karotype of the normal human male. I have checked the 6th chromosome.
As you can see based on size, the higher the number, the less genes it represents. It's unfortunate for Cade that the 6th chromosome is so large and it represents about 6% of total DNA. That means it controls many things that affect the body. Each piece of the chromosome can be broken down and we can know what parts of the body it controls down to the tiniest detail. Each chromosome has 2 arms, known as P and Q. P arm is the short arm. It was detected on Cade's karotype to be missing a small but important piece on the P arm. All this means to us is that we have a little boy that you can think of as a book. You can think of each chromosome as a chapter of the book. Cade is missing some pages from the 6th chapter. You get the general idea of the story, but some parts don't make sense.
This deletion has affected Cade's development, mentally and physically, his muscle tone, the basic formation of his mouth, teeth, and chin, his heart, and possibly his vision and hearing. There are so few documented cases of this and there are so many variations it is impossible to compare. Today Cade's new geneticist took another blood test on Cade to determine his "break point" and the exact areas that are missing. In the meantime, we will continue to do what we are doing, get all the help he needs, and love on him everyday!

Cade Update

Cade continues to be nonverbal. He still has a short soft palate which effects his speech and his swallowing. We still use his feeding tube for liquids only which he continues to break or lose. He can still only say the word "Mama" and "moo" like a cow. But Cade has found other ways to communicate with us. He signs less than 5 signs (progress...) and he has a growing understanding vocabulary and can follow simple commands. Thus far, various doctors have been puzzled as to what to do with Cade's mouth/palate. There may or may not be surgical options and everyone has been very hesitant to do anything because this is so rare and because of his age. I was growing frustrated with my pediatricians who were less than helpful. I recently found him a new pediatrician. She is amazing and I cannot say enough good things about her. She has found us new specialists and we have a new plan for Cade.
Yes that is a huge goose egg on his head from falling out of the RV this morning. Everyone said "what happened?" and I would say "he fell" and everyone would look at me like "sure, I bet that's what happened."
The doctor's office had this really cool chair that of course Cade liked to play with.
Today we went to Austin to meet Cade's new geneticist. She was very helpful in coordinating Cade's care and doctors. She set us up with a cranial facial/cleft palate team in Austin who will hopefully be helpful with Cade's palate. She also updated some blood work on Cade and had us meet with a social worker. They recommended a behavioral specialist based on Cade's horrible behavior in the office. We are in the process of getting Medicaid and respite care for him. With medicaid, I can get Cade access to more programs and more importantly, more therapy.
And this is what Cade does when you make him wait...
The office was a huge mess when we got done. My little tornado will hopefully slow down soon.

Stitches and More Stitches

How many times are we going to have to stitch this boy up! I wish I could tell you how many times we have been to the ER but I don't feel like adding up that depressing number. Cade fell from his booster chair and hit his lip on the table. And being Cade, he never cried.We tried to expose ourselves to as few germs as possible- pretty impossible in an ER this time of year...
We were bored waiting for 2 hours...
stickers for stitches
We opted to go for the quick and painful option as opposed to sedation. Cade didn't handle the sedation well last time and had lots of trouble clearing secretions after the procedure. Because he has such a high pain tolerance, four of us held him down while the ER doc put in three stitches. He cried but I think it was mainly because we were holding him down and he was scared- At least that is what I am telling myself.
All stitched up!
Good God, check out that grill...
All done after a long night!
But he is still my little Superman! No one could go through what he has and still have such an awesome disposition. I love him and he is worth every minute of waiting in a germy ER!

Monster Mash

http://sendables.jibjab.com/view/cQT38nDTeiaeCXoQ


Amy made this with all the kids. Callie is the mad scientist, Cade is dracula, Bryson is the werewolf, Emily is a vampire, and Rachel is Frankenstein.

Happy Halloween!

Callie was so excited she got to wear makeup!

Chanel made a special trip to see them
Poor Captain Hook is a little feverish and not feeling well here.
Granny, I don't feel good
Sleepy, sick little Cade
Callie let Eric hold her






Heather had some treats
Cade dumped his bucket out and Callie was quick to steal his candy

With Papa and GG
Had to stop by and see Sylvia


Thanks Blaine and Meaghan for the Halloween treats!
Blaine this is a bad sign, he only rubs bald heads like his daddy taught him.


Thanks for the great costumes G-ma!

Poor Cade

I've always said Cade has something against holidays because it never fails, he gets sick exactly when I don't want him too! He was having a little difficulty breathing, so he needed treatments all day and when they didn't take his labored breathing away, we had to take him to the ER. He had a low grade fever so I was doubting it was swine flu but you can't mess around with a kid like Cade. But luckily it was just an upper respiratory and ear infections, so we got him a steroid shot and some antibiotics and were out of there in two hours! It helps that mommy works there I think :) And Captain Hook showed up to the ER- with his mustache and all!Callie wanted a little hit of Cade's medicine

Trick-Or-Treat

Oh my was Callie funny this year. I doesn't hurt that she loves knocking on doors and she loves candy. She got this trick-or-treat thing down. The Drastatas always have great decorations and cool things to see. I am hoping Amy got better picks of the girls together because I got home from the ER just in time to leave for trick-or-treating and didn't have my photo opportunities I like to have.

Danielle babysits Callie every week
Callie thought she was welcome in everyone's house. They would open the door and she would squeeze right past them.
Isn't Payton a doll? His pirate costume went so well with Tinkerbell. She lost her Captain Hook :(
These two were so funny. They would just run to the next house! If Payton wasn't moving fast enough at the candy, Callie would just knock him down. She wouldn't let me touch her bucket. She kept screaming "mine" and it was so heavy she had to drag it but Miss Independent wanted no help from anyone. She also insisted on walking.
Ok Beth I'm just going to let myself in.

Making herself right at home...
wouldn't you love to see these three cuties outside your door?
off to the next house! Rach liked for her daddy to carry her but she was pretty enthusiastic about getting her candy.
End of the night... this one is melting down!
kissing Payton goodbye. We were so glad he could come trick-or-treating with us!
Daddy stayed home with a sleepy Cade and did some cuddling with Em.
Callie loves her candy. I have to hide it otherwise she cries for more all day. When people would lower the candy for her to grab some, she would grab candy until I stopped her. I would say "only take one Callie" and being Callie she said "no two" :) When we got home, I didn't realize she had a kit-kat until she had chewed through the wrapper and scarfed it. But what is Halloween without too much candy?

What I Want To Be When I Grow Up...

Dress up day at school. I wanted to dress him as a janitor but everyone got mad (at this point though, I think he would be really happy pushing brooms all day.) So we decided he could be a contractor like his dad and grandpa. He looks a little like Al Borlin but I think he is precious. And Dennis- he loves his Eberhard Lumber Company apron!

Playland Park

Papa and G-ma took the kids to Playland Park a couple of weeks ago. They are both very into rides so of course they enjoyed themselves. Callie said "wee!!!" a lot!



She is trying to keep Cade in the boat...
Someone is pouting here because she is having to wait to ride a ride! Can you believe her?






Face painting

checking out her new design...
Ah, I love my ladybugs

Hook 'em

Hard Work

I guess G-ma Char knows something I don't about how to put these kids to work...Oh yes, Cade loves his janitorial supplies
GGs hat
Maybe I'm not a country girl after all...

The Park By MD Anderson...

I wasn't counting on any hot days so I didn't pack any shorts for the kids for Houston. But it was hot! Cade spotted water squirting and you know Cade. I didn't stop them because I am sure the water felt great!

Even Rach got a little wet




So we can't share clothes with the Jost girls anymore :( Emily has caught up with Callie!

My trashy kids swinging shirtless in the park!

Little Mama

poo-poo? pee-pee?Callie was trying to pick her up even though Emily is Callie's size already
burping her, Emily's face is priceless
lots of kisses and hugs

"Ba Bye" Callie was hinting she was tired of waiting for Rach to get done at the ER and she was ready to go.

The Downtown Aquarium

The kids loved the rides! They had a carousel, Ferris wheel, and "choo-choo" train.
This tiger freaked me out a little bit because it loved Callie. I wasn't sure whether it wanted to baby her or eat her but it circled in front of her and would stop and look at her. She loved it though and giggled and giggled, laughing saying "kitty."
petting sting rays


Cade was interested in all the fish and sharks. He usually is unaware so we were excited to see him noticing and laughing at the animals.


big, fat snake

You know those Akin kids were running around the museum. Stroller? I think not. But Rach loves the safety of her stroller and rarely gets out. Emily was doing pull-ups trying to get out. She can't wait to chase Cade and Callie. In Rachel's defense, the museum was a little too much for her, she got sick and visited the Emergency room while we napped. She was OK and we were back at the museum later that night to get our money's worth.
The kids loved the rides all lit up at night. Callie rode the carousel several times and everyone enjoyed watching her because she giggled and squealed the entire time. It was pretty cute. Cade laughed and loved it and Rach pretended not to like it but we could tell she did. She would hum to the music and she wasn't screaming... a clear sign she was enjoying herself.


Callie couldn't wait to get on the "Choo Choo." She pumped her arm every time it Chooed.
The train stops in this shark tank with sharks swimming over you and all around.


Cade's new buddy is Penny. He followed her around and kept her moving with his constant trouble he seems to find. I think he wore her out!

The Ferris wheel scared me. I am borderline afraid of heights but to have the kids on there was terrifying! Amy and Mike were making fun of me but I didn't like stopping at the top and dangling. Cade kept squirming and I could just see him flying out. It was a beautiful view of Houston though.

Visiting Rachel in Houston

Rachel has been in Houston the past couple of weeks getting radiation at MD Anderson. We were really missing them so we hopped in with Michael on his way back this past weekend. The kids were so excited to see Emily and Rachel and they had lots of fun playing together. Cade and Callie enjoyed exploring (very thoroughly) their apartment. It was very nice and in an extremely nice part of Houston. Bellaire has huge, amazing houses that we gawked at as we drove around.
This is just outside Amy's back door. Callie just stared outside and said "water" over and over. Her and Rachel sat on the back porch and said "Hi" and "ba bye" to all the joggers and walkers that went by.
Cade's classic "whatchu lookin at" look

Mommy More

She needed all the clips in her hair

Callie Arguing in Jibberish...

I posted this link to youtube because I couldn't get it to work on here. It is just Callie arguing with me but I think it's pretty cute...
Copy and paste this in your browser-
http://www.youtube.com/watch?v=4_O4SOO8BHg

Bracken Pumpkin Patch

I have a really hard time getting pics of them together because Callie is such a stinker. Either she won't look at the camera or when she does it's "cheese" with her eyes closed and a goofy look on her face. We picked her up straight from daycare too so she does not have a very fall looking outfit on.


Pushing Cade out of the pic, very nice



Cade dropped a few pumpkins


Callie was incredibly anal about her wagon. She would load it and unload it and load it. When we would move a pumpkin a fraction of an inch, she would freak out, yell at us and move it back. I have no idea where she gets that from. And only she could pull the wagon, such an independent thing.

She just ignored me, I kept saying "look at mommy" and she would purposely look the other way.




Isn't he cute?
waiting for grandma to pay

All done

Cade's New Friend Bo

Cade got this big ugly thing at a church carnival in Stockdale. He absolutely loves him. Bo lives outside because he sheds and Cade just drags him around so he's very dirty. But every time we go outside, Cade goes and picks up Bo and tries to bring him with us.

patting Bo, he knows to be nice to animals

Rachel's Next Adventure

Rachel is now at MD Anderson in Houston beginning her proton radiation treatments. Please continue to pray for her and her family during this time. The doctors continue to stress what a miracle she is and seem very positive! Your prayers are working! Check my sister's blog regularly as she is planning to update more often (and I will be on her to do so!)

Someone Loves Mom's Cooking

More ravioli bake please! She was signing and yelling "more" like crazy this night, couldn't get enough. She is very into feeding herself so she usually eats naked. She is working hard to keep her pot belly which, believe it or not, is slowly shrinking.
she is picking up her leftovers off her lap

Where's Cade?

Well he put himself to bed in Callie's bed, sitting up no less.

Who Wouldn't Want To Cuddle Up With That???

Bad new habits have been forming around here. The kids like to fall asleep in mommy's bed and then I have to move them. But it's so sweet, I don't really care.

Bryson Lee Is Finally Here!

We are so pleased to announce the birth of our new cousin and nephew Bryson Lee! He weighed 6lbs. 14oz and was born last Tuesday. He is doing very well at home and his parents are happily taking incredibly good care of him! I am so happy for them. This past weekend, Amy and I were planning on heading to Kansas to help Robyn prepare for the baby but he was a little early so it worked out! We took our babies, Callie and Emily, to meet their new cousin. Marissa came too. Cade stayed home cause he had school and Rach couldn't come because she cannot get sick. Travis and Robyn have a very nice house and live in a cute little town, Derby, Kansas. And now they have an adorable little one, all the more reason to visit! Here he is...Isn't he the cutest! And his jaundice adds such good coloring...


tummy time
hook 'em
Callie loved playing with Harley and the "bebe"
She also got in trouble from Uncle Trav because she thought it was hilarious to feed Harley her food.
watching for Geese
She always said "shhhh" with her finger to her lips and then would yell "bebe!"
We took her baby doll with us in the hopes that she would learn to treat her better. So far she just bangs her around and I am not impressed with her parenting skills. She finds her body parts though. Showing us her nose \/
kissing the baby
Here i think she was burping the baby...


She loves Bryson and loves her role as big cousin to Emily and Bryson
He's so little!
Someone would get a little jealous if mommy held the baby too long...


burping Emily right here, she's so helpful



awww
Giving Bryson a bath because it's what I do!



Getting some love from Bryson, he's so sweet and such a good baby
Callie tested out all his stuff
And baby makes 5! These 3 are so cute! They grow up so fast- Em is only 7 months! Now it's going to be really hard to get a cousin picture with all these squirmy kids!
Callie says he's "mine"

Proud Auntie

We Are In For It

Alright I might be biased but this girl is smart! I heard Amy yelling at Callie in the bathroom and I went to see what she had done now. She climbed up on the sink, got into Amy's mascara, and applied it! I was so proud of her because she knew mascara went somewhere around the eyes and she even made it on some lashes! I told ya'll she watches intently when I put make up onHow can you be mad at that face?

Happy Birthday Rachel!

Birthdays are a big deal, but they are an especially big deal for Rachel. The goal at her cancer diagnosis at 15 months old was to get her to three years of age so she can have radiation therapy. And as you can see from her proudly displaying three fingers, she will be three at the end of next week- Praise God! I not only want to see her make it to 4, I want her to be a 104! Keep praying, something is working!Amy bought this cute little pinata with a new concept. You have to pull the strings at the bottom to get it to open rather than beat it. Mike of course had a fit and said it was for wimpy kids and went on and on as Michael does! But it was cute and the kids had a great time.Cade always tried to pull all the strings and went out of turn... He would have liked the pinata that you beat!


Funny pic of Mike \/ getting all the candy out. Yes he was the tree...
Cade was excited he got this one pack of gummy worms. We encouraged him to get more (and his Grandpa was yelling "go for the chocolate bars Cade!" Of course he will help finish the candy)
he did really well picking it up and putting it in his bag

Callie wanted to open it and eat it


Ready for cake
All eyes on the cake





"What? I like Cake!"
Rach was so cute opening her gifts. She had to show each and every gift around the room but especially to her papa.

Cade helped open the gifts when Rach was tired of it. He even walked away with a few and especially wanted this princess tent.

Rach had so much fun at her party. It was really fun for us to watch!