Let the "debuttoning" commence

At food school on Friday, Ethan's therapist reviewed his three day diet that I had filled out. (I do this periodically because they like to see what he is eating, the amount, the method, etc.) She brought up the fact that it has been over six months since he has received any formula through his g-tube. Besides some water while he is sleeping, he has not needed his button/tube. So, she looked at me and said, "we need to start the serious process of removing his button." Say what?!


Ok, I admit, we knew it was coming and we are excited (very!), but honestly, it kinda freaks us out a little. For us, it is a security blanket---I know that if he can't get the nutrition he needs, we can give it via tube, even though we haven't had to for half of a year. And, he has had at least four colds (which is what they want because they want to see if kids give up eating while sick) so she feels comfortable to start the process. Plus, Craig and I were chatting about the fact that Ethan is still only eating purées, though he does get down a cracker or two every now and again.

Despite the purées, his therapist was VERY impressed with how well he did this past week at food school. She felt that his tongue/oral skills were incredibly intentional, which is a huge change from the past! While we were watching him, we could see him actively thinking about where the food should be and how to put it there. At times he will even reach into his mouth and move the food to his back teeth and try to continue on. Or, he will stuff his mouth full because by doing so some food will automatically go into the right place. One of his struggles is keeping his head forward when he eats. Sometimes he will tilt his head backwards and that causes any food that is on his tongue to drift to the back of his throat causing him to gag. His other struggle is that he doesn't have a rotary chew yet which makes it difficult to break down food.

There is an entire process to this "debuttoning." First we are to get a doll (I asked if we could do a stuffed animal instead because E likes them so much and that is fine) and put a spare g-button into the stuffed animal. Then, we are supposed to talk about it a lot/play with it, etc., and discuss how the bear is now a "big bear" who eats only with his mouth and doesn't need a button any longer. At some point in the future (and if it was summer, this would be moving much, much quicker) we will have Ethan use his doctor kit and take the button out of the bear. At that point, we will remove his button as well.


I know his doctor would like to see him once before we remove it, but unlike his trach, he does not need to be at the hospital to have it removed. We can remove it from home and slap a band aid on it. The hole will heal quickly, so they say, and he probably won't need any further intervention. Of course, there are cases where a stitch or two would need to be put in, but let's hope that isn't the case for Ethan.

Since it is the middle of flu season, I would prefer that we wait at least into February/March before it is removed. Even though he has done well with colds, the flu is a different story and he still doesn't drink very much throughout the day.


Regardless, we started the process today!! I was told to make it as special as possible so we went to Build-A-Bear so Ethan could pick out the stuffed animal he wanted to get a button.


Meet Mavree...named after Maverick. Ethan calls Maverick "Mavree" or "Mavee" and, as you all know, is quite attached to him. He LOVES this dog!


Clearly, he was VERY excited to have Mavree.

Getting the button kit out and ready for "surgery."

Mavree now has a button.

My only concern with starting this process so early is that Ethan thinks he is getting his button out soon...as in, now. I figured this might be the case, but also didn't know for sure. I talked to him today about his new stuffed animal and about taking out his button in the days to come. The problem was that he wanted to take it out today. When I said not today, he responded with, "Monday, Tuesday, Wednesday?" Poor guy. I just think he may not need as much prep as they felt he may need. But, that is ok. Honestly, if he gets really persistent and we get the green light to remove it, I may just do that. We will see how it goes.

I needed this encouragement! We are thrilled that Ethan is doing so well!! As we look back on this year, 2011 has offered up blessing after blessing. The Lord has been so faithful and has blessed us with both boys and their development. We praise and thank Him for walking with us in such a strong and visible manner.

When Daddy is in charge

They have fun building


They play "so big!"

They bounce on beds like monkeys. (These are new sheets that Ethan picked out. His first sheet set. We saw them last spring but waited until they were on clearance. Love them, but loved the price more!)

They do things that make Mommy cringe....

Don't worry, the wall is fine. And, yes, we have moved the roller coaster. Plus, Ethan has learned to stop.

Merry Christmas!

We hope you all had a wonderful Christmas!! The four of us had a fantastic time together and it was so much fun to see the excitement and wonderment in our boys. Our day started the night before at the Christmas Eve service at church. It was a nice service celebrating Christ's miraculous birth. The best part was hearing Ethan try to sing with us. He didn't know the words but tried to sing aloud along with the tune. It was such a sweet moment for us.

We got home late and while I somewhat expected Ethan to wake early with excitement, I didn't anticipate 6:30 am. (That is early in our house!) He hung out in our bed for a little bit, but after seeing Carter was up, we all got up to celebrate Christmas. Poor Carter was pretty miserable (cutting teeth) for most of the morning and had to have a morning nap by 9:30 am. After some Tylenol and Orajel, he was feeling better.

The boys received many thoughtful and wonderful gifts from family and friends. Santa brought one big gift for both boys--a jeep power wheel. (Video to come soon!) Many of their gifts were joint gift this year, which is perfect! Even if they receive individual gifts, our rule is that once they are opened and looked at, they become a "family" toy--no differentiation between Ethan or Carter. If they are in our house, either boy can play with any toy at any time. Sure, this may change with time, but for now, it is what works best for our family. (I also don't allow toys in their bedrooms mainly because I don't have the time or energy (especially right now!) to be cleaning up messes upstairs and downstairs. Plus, our boys are young enough that they still need to be monitored and by having all the toys in once place, it facilitates them playing together.) It is so much fun to watch them play together.

Putting out cookies for Santa---Ethan picked A LOT of cookies. Apparently he believes Santa was going to be hungry.

Santa left crumbs and a note

Merry Christmas Maverick!

How exciting, a train table!! Thank you Nana and Grandpa! And, trains/tracks--thank you Aunt Julianne and Uncle Jason!

Wow, a roller coaster! Thank you Grandpa (my dad)! (I will post video of this soon.)

Both boys love the roller coaster. Ethan can get the car up to the top and push off by himself. Carter can get it up but need a little push.

Lots of fun blocks to build and knock down! Thank you Oma!

And, a new scooter! Thank you Oma!

A small roller coaster--thank you, Oma!


Mack with cars inside--thank you again, Oma!

I made our traditional quiche for breakfast, though if Carter remains allergic to eggs, this will cease next year and we will come up with a new tradition! We had such a fun together. I had to join the boys during their nap because I was exhausted. Thankfully, I have an amazing husband, who by the time I woke up, had broken down all the boxes, cleaned up all the messes and cleaned up/put away the guest room which was overflowing with wrapping paper, bows, tissue paper, etc. I am so blessed!

Throughout the day, Ethan would tell me about baby Jesus. He would rock his arms as if he was holding baby Jesus. That meant the most to us.

More pictures/video to come soon. I promised Craig an apple pie and need to get moving making it!

Three

Notice anything?

Perhaps an extra small stocking in a particular stocking? Hmmm, that could only mean one thing!

We are having another baby!!! :) Baby #3 is due to arrive the first week of July. We are thrilled!!

I actually found out our last day in Hawaii and told Craig as the plane was taking off for Denver. :) (Yep, I made that one memorable!!)

I have been pretty sick with this one. I think it was the same with Carter but the difference has been that being on the computer made me sicker. Because of that, blog posts have been sparse since I am on the computer for work and that was bad enough. Thankfully, this past week or so, the sickness has ended for the most part although the exhaustion has remained.

We are truly blessed and are thanking the Lord for this new addition to our family.

Psalm 127:3 Behold, children are a heritage from the Lord, the fruit of the womb a reward.

Psalm 139:13-16 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 very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

Cookies and Snow

I love being on Christmas break. It is so nice to just spend time with the boys and not worry about all my grading, the meetings or tracking 316 students. We have had a blast!


After 10 years, I finally found a sugar cookie recipe that is "Colorado proof!" Every recipe I had tried for years would run and turn out looking like blobs, not resembling anything close to the shape that had been cut. As Ethan is demonstrating, you can never have too many sprinkles on your sugar cookies.

Would you like some cookie with all of that frosting?

Last night it snowed. We got around 10 inches at our house which meant Craig worked from home and shoveled snow. A lot of snow.

Even though it was pretty cold today, a little time outside thrilled this little man.

Even a face plant in the snow couldn't dampen the joy.

Such a helper

My other little man was sleeping during our outing in the backyard. (Plus, I only have one pair of snow pants.) Carter just now, this week, "gave up" his morning nap at almost 19 months old. His afternoon nap was getting on the short side so we dropped the morning nap. It has taken him a few days to adjust and we can tell that he still gets pretty tired by 11 am. But he is a trooper and now takes close to a 4 hour afternoon nap. It will be warmer tomorrow and I am borrowing some snow pants from a friend so Carter will get his chance to explore the snow.

Special Day

Since the beginning of school, I have talked to Ethan about the fact that we don't wear pajamas out of the house unless he is going to the hospital. Today was his last day of preschool before break and they were having a pajama party/Happy Birthday Jesus party. He was curious why he had to wear pajamas to school in light of everything I had told him. So, I explained that today was a special day at preschool and that it was ok to wear his pajamas to school today. Once he heard "special day," he went immediately to get his tie. E brought it to me saying, "tie, tie." (Which really sounds like "eye.") He also brought me his black church shoes as well. While I told him he could not wear his back shoes, he insisted on wearing the tie.


So, there you go...a pajama and tie wearing preschooler.


Wearing his pjs, a tie and a "Happy Birthday Jesus" hat. :) The cake didn't go so well (not that I expected it to) but he had some applesauce instead.

Christmas Program

Oh, was he excited! I knew they had been practicing for weeks at preschool and I was told Ethan did a very good job at following along with all the actions, since he can't sing the songs. He was thrilled to dress up and wear a tie "like daddy." Boy, did he look handsome.

Once he hit the stage, I think the shock of so many people kept him from following along with the actions. But, he didn't get upset or cry, so I think that was great. In fact, at one point he started dancing so much that he started to run off the stage! Oh, it was hilarious!



He is the one in the middle with the tie. All the kids jumped out from behind wrapped presents.


Singing the "Teddy Bear Song" with the boys from his class.

This was when he got excited and started dancing...no one else on stage was dancing. :)

It was hard to get pictures because he was right in front of the candlestick.

Ethan and Madelyn after their performance.

We also video taped the entire thing with our video camera (that is pretty old--the kind with the tapes) but the video didn't come out and anything white isn't visible. :( I am so disappointed. I did get some small clips on my camera so I will post those soon. It was a great night for us. We deeply enjoyed watching Ethan participate in his first Christmas program. It means more to us than most (ok, you all understand!) will know.

May I be excused please?

We have been working with Ethan when it comes to speaking in sentences. He tries so hard, but often falls short of more than two words combined together. We have noticed that he often will say a word correctly without thinking, but once we ask him to repeat it, he can't articulate as clearly as before. Whenever Ethan wants to do something or needs something, we walk him through the entire sentence, always starting with "May I...." The difficult part of working on speech is that his eating skills tend to plateau when he excels with speech. This is due to the fact that the two tasks involve moving the tongue in opposite ways. (Speech is vertical while eating is horizontal.) Even so, we are thrilled with his gains in speech and a lot of it is due to preschool. Last night he told Craig, "Monday, Tuesday, Wednesday." Clearly they go over the days while they are at preschool, which is also the reason why his week ends after three days! :)

Imagine my surprise when his teacher told me that after snack, with both teachers present, Ethan looked at them and said, "May I be excused please?" His main teacher told me that she almost fell off of her chair and they didn't know how to respond to him at first! According to her, it was clear as day. I was so shocked when she told me that I didn't know what to say! Ethan is doing really well and we are so proud of him.


This new game is called, "blue 42."


The boys play it during football games. They line up and Craig says, "Blue 42," and then charges the boys.

Then, they get tossed in the air as laughter erupts.

Today we made chocolate covered pretzels. I have great helpers!

The difference between a child with an oral aversion and one without. Carter instantly knows where to put the pretzel and how to bite down. Ethan puts it in his mouth sideways, because he is still working on the skill of biting with his back teeth. I do need to write an update on his eating soon.

E was a great helper! Look at all of those sprinkles on one pretzel stick!

Concentrate, concentrate

"Yum! My mommy let me have a little bit of chocolate!"

Unlike most kids, Ethan never thinks to put the sprinkles in his mouth or to lick his fingers...these are skills we are trying to teach him.