Thursday, February 28, 2008
I didn't do any editing on these just added a vignette to two of them using Picnik. Picnik is a free website and it does some pretty cool stuff, check it out!
Wednesday, February 27, 2008
We are going to the Dells to attend the Annual RTS Midwest Reunion. This will be our first time attending and are really looking forward to meeting some of the families that I have known through emails for a year and a half. I will be posting pictures when we get home on Sunday or Monday.
What the heck is wrong with people??!! Why do they think that this type of stuff is okay to have in CHILDREN'S cartoons? Give me a break, would ya?!
Tuesday, February 26, 2008
So we got the video camera out tonight to document Will doing some of his new stuff. This one is of Will trying to stand and then giving up, he opted to get Mr. Cow instead. Then the video shows you how William "loves" on Mr. Cow. Oh, Mr. Cow just come out of the dryer. He had to have a bath today. He was so gross! If you want to learn more about Will and his Mr. Cow click here.
This is a video of Will's cute laugh. Whenever he gets to laughing like this it is hard not to laugh with him. That is Josh behind him saying a word that Will thinks is hesterical. Make sure that you have your volume on, you have got to hear the laughing! Enjoy!
Monday, February 25, 2008
Anyway, since we have started with the pediasure a few weeks ago he has been increasing his daily ounces. With his formula we would struggle to get 20 ounces a day in him, with the pediasure he is easily getting 24 ounces down a day. With the formula we were tubing feeding him with every bottle, since we have started the pediasure we have not had to tube feed him at ALL!!!! Yup, you read that right! We have not had to tube feed William in over 2 weeks!! He is DRINKING 24 ounces a day! I think that he likes the taste of the pediasure better than the formula. It is a nice vanilla flavor (he smells like a vanilla bean most days, sometimes, me too!).
In addition to the pediasure he is also eating stage 1 baby food a lot better now too. He will eat about a full jar of the baby food at each meal. He is eating almost three jars of baby food a day. Of course the stage 1 baby foods are the really small jars but nonetheless, we will take it! Before he would let everything that we would put in his mouth just fall out. Now he is holding it in his mouth and swallowing it, letting nothing come out!
You have no idea what an accomplishment this is for William. It is time to start packing on the pounds!! Just kidding!
Here he is opening gifts. He would open one and then say "One more!" He is so funny!
James with his new puzzle. When he got to the last present and there was no more he kept saying "just one more!". I think he would have been fine with us putting the presents back into the gift bags so he could open them all again!
Thanks for the pictures Andrea! I forgot my camera, again!
Thursday, February 21, 2008
Then take a look at Will's new favorite trick. I moved his favorite toy, his chair under the window yesterday to vacuum and forgot to move it back. This is what I caught him doing today. He is a dare devil. He enjoys looking out the window.
This is the look that I got when he heard the camera.
Here are our puppets. We made two monsters and two princesses.
Here is Caroline showing off her Monster Puppet!
Here is Caroline putting on her show behind the chair in the living room.
Wednesday, February 20, 2008
Caroline and I went to her classroom. She had to show me every detail. "This is where Cameron sits, Seth sits....This is where I hang my backpack"...etc. She was very proud.
She also colored a picture for me. It read...."I love my daddy because
Next, we went to the chapel where the kids sang a variety of songs. Her favorite song was the "Little Bitty Fish" Song. One of the pictures show her growling during the "Dinosaur Song" and the other shows the kids wearing sunglasses during the "Cool ABCs".
Finally, we went down to eat ice cream. We had ice cream sundaes. Caroline put chocolate syrup and sprinkles on her sundae. She didn't really eat a lot of ice cream. She preferred to skim the syrup and sprinkles off the top.
Caroline and I had a great time. It was nice to spend a some time with Caroline (by ourselves).
I was also pleasently surprised that the eye doctor knew of RTS, he had even given a lecture on RTS during his residancy. This information put my mind at ease when I questioned not being checked next year. He told me that if Will had gluacoma (many RTSweeties do) then I would be able to see his eye actually buldge. So at least now I know what to look for.
Yesterday's appointment went well, we were only there for about an hour and a half. I wish we got more "see you in two years" reports!! ;-)
Monday, February 18, 2008
I have a cousin that has a little boy that is two days younger than Will. It was really hard for me yesterday. I could not help but look at B. and compare Will to him. B. is walking, eating table food, trying to talk, etc. Will is doing none of those things.
I am not sure if I am sad for Will because he doesn't fit into the "normal" mold or if I am sad for myself. Before both of my children were born I would dream about what they would be when they grew up, the things that they would accomplish in life and things like that. I still have those dreams for Caroline but my dreams for Will are now altered from what they used to be. I dream now that he will someday be able to walk and to be able to communicate with us, whether it be vocally, using signs or a communication device. I want my child to be able to tell me what is hurting or what he wants. I want him to be able to tell someone if they hurt his feelings and I want to know for sure that he is understanding what I am saying to him.
I realize that each child is different and I should not compare but it is so hard not to do. I feel like I have excepted my "Holland" but sometimes it is hard to stay.
Welcome to Holland
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Please do not think that I am completely grateful for my William. I think that he is a true treasure. But sometimes I miss being "normal" (what ever that means!).
Friday, February 15, 2008
This is the chair in the living room with all of the laundry that I did today. Holy Laundry Batman!!! Now I just need to muster up the energy to put it all away!! Maybe tomorrow...
The problem that I see us having now is finding shoes that will fit over the braces. Will has a very wide foot so with the braces I am sure that he will need a double or triple wide shoe. Where do you find those???
Thursday, February 14, 2008
We had a great day today. This morning we woke up and made Caroline a heart shaped blueberry muffin. Caroline gave Will the Valentine gift that she picked out for him. She picked out an Elmo blanket (that is really soft) because she has a blankey and thought that Will needed to have one too. Here is Caroline giving Will the blanket.
Caroline went to school and had a great time at her Valentine's Day party with her classmates. They exchanged Valentines and had special treats.
After school we went to a Riverbend Bounce House. It is an indoor facility with the blow up bounce houses all over the place. I think that there were five different bounce houses for the kids to play on. I am a member of our local chapter of Moms Club, check out our website here. Today was our Moms Club Valentine's Day Party. There were lots of Moms and kids in attendence. Caroline had a blast, Avery was there and she loves playing with him. I think it is safe to say that Avery is Caroline's best friend. Will had a great time too. He loves to bounce so this was right up his alley. At one point he had a whole bounce house to himself and Caroline went in to help him bounce a little bit. She would gently bounce and he would giggle and laugh out loud. There was one that I could help him with. I would hold his hands and he would jump and giggle and laugh. He was wore out. We all had lunch together and had a great time. It is always nice to have adult conversation during the day and it is nice to have the kids burn off some energy and sleep well! Sorry I don't have any pictures from the bouncing party, I forgot my camera at home!!
When we got home the kids took a "rest", Caroline says she is too big for naps so we have to call them "rests". Anywoo, while they were doing that I made heart shaped cakes for dessert tonight.
Josh got home from work and Caroline gave him the gift that she worked extremely hard on. She was so proud of herself. Josh loved it. Here is the gift...
That is Josh and Caroline holding hands with a bunny nearby. She stamped all of the hearts on the border. They are in a pattern of 2 big hearts then 2 small hearts (she took alot of time with that to make sure that it was just right). She even signed her name.
She made it for him to put in his new office at work.
Then we had supper. As a treat, Josh stopped at Papa Murphy's and picked up a pizza. They were having a special today, a heart shaped pizza!
If your not familiar with Papa Murphy's, it is take and bake pizza. When Josh got home from work we popped it in the oven and 15 minutes later, DINNER!
After dinner we had our heart shaped cakes. We had a "hearty" dinner! LOL!
Caroline made me "Valentimes" all day long. She drew me pictures with hearts and flowers on them. Josh and I exchanged cards this morning. Josh and I gave Caroline a baby doll and baby bottles (she is really into playing with baby dolls right now). And Will gave her a small goodie bag with various things in it. Josh and I gave Will the book by Eric Carle, Brown Bear, Brown Bear, What do you see? and a matching puzzle with the animals from the book.
We had a really fun day with lots of love. I hope that everyone else had a great day!
I had to get gas the other day. When I got back in the van she asked if I had got her a treat. When we lived in Indiana and her and I would be driving back by ourselves (a four hour drive) I would stop and get gas and buy her a little "treat". The treat could be cookies, goldfish, candy, anything that would keep her happy for awhile on the road.
Okay, here is the kicker. In March we will have lived in Illinois for 2 years! Caroline was 2 years old when I did this! I think that is amazing.
A few days ago she said to me "Mom do you remember the last time we went to Jose Jim and Barbara's house and we played hide and seek." Okay, Jose Jim (he would always jokingly say "No way Jose" to her, hense: Jose Jim) and Barbara where our neighbors in Indiana. The time that she is talking about is when Jim and Barbara watched Caroline for us while Josh and I went and closed on our house. She even told me where Jim was hiding and that it was a really good place because she couldn't find him. She was 2, this all happened 2 and half years ago. Amazing.
And she is always remembering specific playdates with her dear friend Walter. Caroline and Walter share the same birthday and they lived four houses down from us in Indiana. Caroline and Walter grew up (for 2 years) together. She can remember toys that he has, games that they played and lots of other things. She often says to me "Mom do you remember when Walter and I...".
I can't believe some of the stuff that she says. She is completely amazing.
Monday, February 11, 2008
I can hear the neighbor's dogs outside barking, it brings tears to my eyes.
Josh told Caroline last night that Madi went to "Doggy Heaven". Caroline took it very well. She told Josh that she was right. Josh asked what she meant and she said that she knew that Madi would not be coming home because he was so sick. He told me that and I wept, still weaping. When I was leaving to take Madi to the ER she wanted to go out to the car and tell him good-bye. She petted him and said her good-byes.
We have not had much luck when it comes to having family pets. Before Caroline was born, Josh and I got a dog named Molly, a shih-tzu. She had many health problems in her short life. She passed away this past March, on St. Patrick's Day. Josh didn't want to get another dog but agreed to let me take in Madi (I think to help heal my heart and to make me happy). Madi was my parent's dog. They were going to give him away because their hearts were still healing from the loss of our beloved family dog Sheba. They felt that they were not offering all that they could to Madi so they decided to let us take Madi in. So even though we only had Madi for six months, he has been in my family for several years.
Madi was in perfect health the day before last. I would have never thought that something like this would have happened. Madi loved to play fetch. We would throw a tennis ball and he would chase after it and bring it back and drop it at our feet, every time! He would play this game for hours if our throwing arm would last. Madi loved to sneak a nap on a pillow (remember he slept like a human!). He was very friendly and very gentle with the kids.
I am taking this harder than anyone. I would have never thought that I could get so attached to an animal, but Madi was a gentle soul and a wonderful friend. I miss him.
Sunday, February 10, 2008
When we got to the ER, I had someone go out and carry Madi inside (he is too heavy for me to carry). They took him to the back on a gurney and started working on him. They said that his body is responding to shock. They gave him an IV and pain medication. They took x-rays of his chest and abdomen to check for internal bleeding and whatnot. There was a "gray" spot near his splen area, so they are going to watch that area very closely. He had to stay overnight so that they can do blood work and watch him. They are going to call me when they get the results of the bloodwork.
I don't have a good feeling about this. I think that Madi is gravely ill. Please pray for our family pet, Madi.
Saturday, February 9, 2008
It is really cool to read everyone's blog and learn about each one of these special kids. It is always nice to know that there are others in this world who know how it is to raise a child with special needs.
Check them out!!!
Thursday, February 7, 2008
Here is Mikkah eating the icing...
Here is a picture of Mikkah's Cars cake...
Singing Happy Birthday...
William with my sister Marcea (Aunt Marty)...
Caroline with Mikkah's construction gear on...
HAPPY BIRTDAY MIKKAH!!! Love, Aunt Me (that is what he calls me, melts my heart!)
Monday, February 4, 2008
We have started switching Will over to pedisure slowly to make sure that he can tolerate it. We are giving him half formula and half pedisure. He seems to be doing really well with it and he likes the taste. He has drank two full bottles today, we didn't have to tube him any of this afternoon feeds. That is awesome!
When we think that Will is tolerating the pedisure we are going to completely stop the infant formula. Once we do that we are going to start puting stage 1 baby food in his tube. We are hoping that this will help with some of his constipation issues too. The doctor thinks that the thicker Will's feeds are the better for his reflux. Thicker liquids tend to stay down better so putting the baby food in with the pedisure the better.
Dr. Brady also changed Will's mic-key button because the plastic piece that plugs the hole on the old one was torn. She also treated his granulated tissue around the button with silver nitrate.
It was a very productive visit today. I felt like we got a lot accomplished.
Sunday, February 3, 2008
He is Will's favorite thing in the whole wide world. Cow was given to him during his hospital stay when he had his tethered spinal cord release surgery in November of 2006. Since then Mr. Cow has been with William every night.
Will loves on Cow, he will roll around on the floor with Cow, bits Cow's nose, rubs Cow's ears, pulls Cow's tail and probably many more things.
When it is time for Will to take a nap or to go to bed Josh or I will say, "Are you ready to go get Mr.?" and Will will start giggling and laughing and that is when we know he is ready for bed.
When we ask Will, "Where is Mr.?" He will crawl around the living room looking for Mr. Cow and when he finds him will roll around on the floor and eat Cow's nose.
Cow has been thrown up on more times then I can remember. Cow has to have a bath regularly and usually is a nice grey color before bath and then a clean white after. Cow goes with us every where, to church, to the grocery store, to ALL doctor appointments and anywhere else we venture to go.
I think that it is so cute to see the bond that Will has created with this sometimes stinky stuffed animal. William LOVES Mr. Cow.
Will loving on Mr. Cow.
Will kissing Mr. Cow.
And this is usually how Will carries Mr. Cow around, in his mouth!
Friday, February 1, 2008
"People get confused between something being inherited and something being genetic. Carter's RTS is not inherited (eg. neither you nor his dad have RTS that you passed down), but it is genetic in that problem with a genes that happened for the first time in him caused his RTS. Now that his genetics are affected, if he was to go on to have children of his own, his children could inherit RTS from him (50%) chance). Your chance of having a second child with RTS is quite low and represents the chance that multiple egg cells or multiple sperm cells harbor the gene change (VERY unlikely). Your other children ARE NOT at increased risk to have children with RTS. RTS is fully penetrant which means if you have the gene mutation, you show manifestations of the disorder (eg. there are no "silent carriers" of RTS). Also, to reiterate something I told you when we first met-- nothing you (or Carter's dad) did or ate or were exposed to, none of the drugs you did in college, caused this to happen. When DNA is replicated, millions of base pairs are copied and sometimes mistakes are made. The cell has an editing system that picks up the vast majority of these mistakes but sometimes things are missed. There is no blame to lay, this was an out of the blue thing that happened and there was nothing you did to cause it and nothing you could have done to prevent it."