Happy Thanksgiving!!!

I am so unbelievably thankful for all of these babies!!!The kids love baby Bryson (or pie-tin as Callie called him)


They are thankful for each other!
I'm thankful for this picture where Rachel is smiling (and more importantly for her health!)

Christmas Tree Lighting

Shana and I decided at the last minute to take the kids to the tree lighting on the plaza. We got there just in time for the countdown and the kids were very impressed with the lighting. Callie was oohing and aweing and clapping. It was really cute. What a great way to kick off Christmas!Here is little Miss Piggy strutting around with her corn dog.


It started to rain so we went into the coffee shop. Callie is still working on that corn dog.

Well now she has a cookie... even better

Rachels "All Done"

Rachel's doctor decided midway through treatment that he had a good feeling that Rachel was done with radiation. Just a strong, good feeling. Her MRI looks the same but he thinks that it is possible her tumor cells are now scar tissue. Another theory is that they are slow to grow, and thus slow to shrink. I think he was about to do more damage and he wanted to be sure it was absolutely necessary. They will re-evaluate in December. You can read more about it on Amy's blog that I have linked. Anyway, they found out two days before when her last day would be. So with much rearranging of the schedule, I was able to be there! It was really cool to see the proton center and what Rachel was doing everyday... Unbelievable technology! And thank God for it!
This was where she was supposed to ring the bell that she was all done but she was a little fussy coming out of anesthesia so her mom rang it for her.
poor Emily is considered a germy little thing and had to wait outside.


Happy Last Day (hopefully) To You!

Cousin Time!

Cousins Rachel and Emily are finally back from Houston!!! YEA!!! Rachel is all done with radiation (hopefully) and isn't on chemo! I was lucky enough to get to go to her last day of radiation, more pics to come.
Emily is growing up and she seems to really enjoy Cade and Callie and they like her too. Callie was insistent that she have a ride in the wagon. She pulled her everywhere. She just loves being the "big girl"

Daredevil Em was standing up.

In this pic, Cade has hijacked the wagon and Callie is screaming "no Tade!!!" at the top of her lungs. Anytime Callie flies off the handle like that, Cade thinks it is the funniest thing and he just keeps driving her crazy. In the meantime, poor Em had to hang on for her life! Rachel just watches the whole thing from a distance and giggles.

Cade loves Emily too. He likes kissing her and helping her. He even tries to pick her up.

Emily did survive her crazy wagon ride, and I think she enjoyed it!

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!