Wake up call

Ethan has been in a "big boy" bed for a little over 14 months. In that time, he has only gotten out of bed three times and really, two of those times he fell out. I have been showing him how to get out of bed but he tends to be on the cautious side and normally wants one of us nearby.

A few weeks ago, we noticed that he learned how to turn knobs on our doors. Then, last week, we heard his door shake a little and we knew he was trying to open it to come say good morning. After he opened his door, we heard him walk down the hallway, saying "hmmm," every few feet. It was very cute to hear. (Plus we could visualize him holding his finger up to his mouth each time.) He hadn't done it since, so we didn't know if it was a one time deal or if he would begin to come out of his room in the morning.

Fast forward to this past Tuesday. In the deep of my sleep, I thought I heard the softest, sweetest whisper of a hello. Thinking I was dreaming, it didn't dawn on me that Ethan was standing right there, smiling with pride. After the second sweet and soft "hi" I opened my eyes to the best wake up call ever--Ethan's smiling face. We are proud that his gross motor skills are improving allowing him to get out of bed and that his fine motor skills are improving allowing him to turn the knob on the door.

He has come to say good morning every morning since, but yesterday I took him back to bed since it was a little too early to be up. He patiently sat in his bed reading books for the next 45 minutes until I came to get him. As for naps, Ethan has yet to get out of his bed once he wakes up. I have enjoyed knowing that he will be my alarm clock.

Pillowcases

We have yet to buy a bedding set for Ethan. I figured I would wait until he is potty trained and off of his night feed. As it is he manages to sleep on every single inch of his bed throughout the night (and he has a double size bed!) so I doubt he would sleep under a comforter or quilt anyway. Plus, with a night feed, it is hard to have him under a large blanket. I laugh at all of the different positions I find him in throughout the night. But, I know he loves Cars so I decided to make him a few pillowcases during his nap today. He was quite excited when he woke up! I figure this way he can have a little fun with his bedding but I don't have to make any purchases at his point.

Seeking adventure

Carter is such a fun little man. He is quite adventurous and is ALL boy. We adore his personality.

I remember when our physical therapist told me that typical toddlers/kids would swing on a bar when given the chance. (Ethan doesn't naturally do this type of activity.) Sure enough, Carter is willing to do it. It is so interesting to witness the differences between the boys and the effects of a long medical history on one versus normal/age appropriate development with the other. I am amazed at how many things we have had to teach Ethan, whereas they come so easily and naturally for Carter.

His first haircut! Clearly Carter has plenty of hair and he was in desperate need of a haircut. I had taken Ethan in for a cut (I had mine done as well) with my hair stylist whom I have been seeing for 8 years. She is fabulous!

After one side of his hair was cut, we had to get inventive to keep him still. So, we took him into the bathroom and let him play with the water. It worked like a charm. This is why I love our hair stylist...so great with the boys.

I just realized that he is able to walk up and down the stairs. Oh boy.

Blueprint

Ethan and I had a date this past Thursday. I thought I would treat him to an ECHO and EKG...you know, the kind of stuff all moms do with their boys, right?! :) I did try to make it as special as possible, making sure I packed his favorite movie for him to watch during his ECHO. Plus, since it was just the two of us, Ethan got my undivided attention. I was thrilled that he wasn't upset or anxious as we approached the hospital. (I truly thinking going down to the NICU reunion and having fun at the hospital really helped this visit.)

Now that he is three-years-old, he is not required to undress when he is weighed or while his height is checked. The undressing always made him upset, so it is nice to have him remain a little more relaxed. The only other part he really dislikes is having to lie down. But, we made it through the check-in with hardly any tears...except for mine...because my sandal broke (my absolute favorite pair that goes with EVERY outfit) and I almost had to shed a tear as I spent the rest of the morning dragging my left foot so to keep the sandal on my foot. I digress.

I was happy to see that Ethan's saturation levels are great (95%) and that his blood pressure is perfect. He watched his favorite movie, Cars, during his ECHO and besides wanting to squirm a little bit, did quite well. I think the movie really helped, not to mention the fact that watching a movie is considered an extra special treat in our house. His EKG also went well.

The results were fabulous!!! His pulmonary valve is not leaking at all! Ethan's right ventricle (which was enlarged prior to surgery) has remained smaller. While his pulmonary arteries aren't visible via ECHO due to his many surgeries, etc., the assumption is that they are doing well and not enlarging too much, if at all. The current plan is to wait another year to see the cardiologist (yay!) and to also have a MRI next summer to get a good look at his pulmonary arteries. There was talk regarding how Ethan's heart sits a tad below his sternum, but it is thought that only a small part of his heart is below and it should not cause him any trouble for his current age activity. For the next year, we will continue to monitor Ethan and watch for the classic signs of trouble.

Ethan's cardiologist was thrilled with the results of the ECHO and EKG. His doctor reminded me that there is no blueprint for Ethan since he is the first of "kind" that has survived this long. However, Ethan is clear to do any activity his three-year-old little body will let him do. It was such fantastic news! Praise the Lord for His continued protection as well as His extreme blessings


Sculptures in front of the hospital

Colds

I always feel that colds should be reserved for winter because I think they feel worse in the summer. But, summer colds have visited our home and both boys have spent the last few days with noses that have run like faucets. Ethan is already starting to feel better but poor Carter is miserable. He cried inconsolably for hours today. He slept a few hours last night, but spent most of the night crying in my arms. I am pretty sure he is also teething---a double whammy. Hopefully he will sleep tonight! Poor baby.


Before the cold hit

(I am having an increasingly difficult time uploading video and pictures. Hopefully Blogspot will make needed changes soon so that I can post some new videos of the boys.)

Chairs

We have been waiting to receive these cute chairs for the boys. We ordered them back in March as birthday gifts for both boys and we have been waiting ever since. They are a hit!

Mmmmmm

While it doesn't mean that he likes the food he just put into his mouth, Ethan's new phrase whenever he tries somethings is, "Mmmmmm." It is as though he is trying to convince himself that he likes the food or wants more of it. He is doing well these past few days and while his volume has remained low, it seems to be enough for him at this point. Cutting back on his night feeding has helped him with his oral volume intake. At "food school" today he swallowed four mandarin oranges! We found out that his weight has stayed the same from last week but he has grown in height. I don't care if he gains weight per se, it is more that he continues to thrive in his eating skills.

For now, we will keep his night feed at 4 oz and see what he does these next few weeks. We still can tell he is frustrated, but I think the success today at food school really helped! We will keep working hard!

A wall?

We are concerned that Ethan has hit a wall when it comes to eating. Actually, it seems more like he crashed head-on. It isn't that he has completely stopped eating orally, but this weekend has been a challenge. A he-will-clasp-his-hands-over-his-mouth challenge. We don't know why or what happened or what changed. The foods haven't changed, the schedule hasn't changed and the process hasn't changed. But, feeding him these past two days has been difficult. We have been wracking our brains figuring out what is going on. We have come up with a few ideas:

First, we have realized that he is frustrated again with eating. Frustrated that he can't eat the same food we do. (Not to mention Carter eats what we do, so I don't know if that is playing a factor as well.)

Second, he may be getting too many calories. In the beginning, he was getting quite a bit but he was also demanding it. Maybe now that he has gained some weight, his body isn't needing as many calories. I was told that if his volume ever slows, we should reduce the night feeding. Therefore, tonight he will only get 4 oz of formula through the pump and we will see how he does tomorrow.

Thirdly, I haven't had his favorite food the past few days. I had one of his favorites, but he always has yogurt for breakfast and he really likes yogurt. However, since I was sick I didn't go to the store for any extras. Maybe that changed things up enough to throw him off. Or, after having three dirty diapers today, maybe his tummy has been upset and he needs a break. Since he can't tell us why he won't eat (as willingly or as much), he turns his head, tries to have detailed conversations that I can't understand or clasps his hands over his mouth.

Dinner last night was especially frustrating. I teared up afterwards because we have worked so hard and I do fear him slipping back to tube feedings. I realize that it would not be the end of the world if he did. It is just that he has done SO well and we are so proud of his hard work. Please continue to pray for his eating skills. We will see how he does these next few days.

Catching up

It has been a long week in our home. I have had a stomach bug most of the week so I haven't been doing much of anything! But, I am on the mend and no one else seems to have caught the bug. (Thankfully!)

Ethan had an eating appointment, aka "eating school" this past Monday. With a weight gain of only 2 ounces, we will continue to give him his night feeding for now.

Carter has been renamed Humpty Dumpty due to his fearless nature. I caught him as he was falling out of his crib the other day...a few hours after he slipped and hit his head on the heating register. I have to say that he is quite tough though! A second bottom tooth has popped through and he took five steps yesterday! I am sure he will soon be running!!






Clearly dishes get done during naps!






One of our prayer warrior friends gave us this sprinkler. Ethan loves it! Thanks Rachel!

NICU Reunion

Yesterday we got to spend part of the afternoon celebrating with other 2007-2008 NICU "graduates." TCH hosted their 5th Annual NICU Reunion. This was the first year we attended and it was a lot of fun. Ethan had a blast and I love the fact that he was able to do something truly fun down at the hospital. He knows the TCH logo and normally when he sees it, he gets nervous and upset. It was nice for him to do numerous fun activities and see some of those who cared for him while he was an inpatient. One of his doctors hosted the event--she was actually the one who discharged him from the NICU. While we didn't see any other doctors or nurses, we did get the privilege of seeing a friend from the milk lab, along with Ethan's old physical therapist and occupational therapist! That was one of the highlights for me.


The only not so good part of the day---characters from Star Wars. Ethan is petrified (to say the least) of these guys. It doesn't matter that we tell him they aren't real; he jumps into our arms and holds tight for dear life. I tried to tell him that Chewbacca was a big puppy and for a few moments I had him convinced, especially when Chewbacca played peek-a-boo with Ethan. He had Ethan laughing until a Stormtropper came up...then it was ALL over!


Ethan LOVED the panda!


Dinger from the Colorado Rockies came to visit all of the graduates. Ethan loved him.




Of course, this was Ethan's favorite part of the day--riding on the board with his old physical therapist. (And, I still feel is the best one there is!!) We love her.




Our miracle NICU grad


Ethan's playing with his favorite occupational therapist. The rice table was a hit! And it was a joy to see another loved therapist. Again, the best!


Handprints


Even Carter got to join in the fun


Basketball fun


The lion says, "ROOAARR."






After all the games and fun, there was a short program with prizes. There was a slideshow with many of the graduates, along with lunch. This was Ethan's slide. It was a great event and we had a wonderful time.


After the program I brought Ethan over to have his face painted. He was nervous, but he kept pointing out all other boys and girls who had painted faces. (We did his arm instead.)I had him sit on my lap and while he said "all done" before she started, I wanted him to try and see that it wasn't going to hurt. While he watched the artist like a hawk, making sure she didn't have needle back there, he did great. And, afterwards, he LOVED the puppy on his arm. It was another great example to show him that it doesn't always hurt.


"Look Carter, I got a puppy on my arm!"


Afterwards we went upstairs to see the purple cow. Ethan knows the cow is on the 3rd floor and wanted to go up to see him. (The 3rd floor is where the Heart Institute is located.)

Drinking

Last week Ethan gained 12 ounces. That means that in two weeks he has gained close to two pounds! Wow, that is pretty great! He didn't have eating therapy this week, but he does have a visit set for this coming Monday. At that point, we will weigh him again and see if he has continued to gain weight. At the direction of the director, we stopped adding the protein powder to his food after his last visit. If he has gained substantial weight again this past week, we will reduce his only tube feeding down to 4 ounces, with the hopes of removing it completely in a few weeks. If that is the case, we will no longer use his tube at all! However, it will remain in place for a period of time after we stop using it.

In order to be completely done with the night feeding, Ethan needs to start drinking effectively. The night feeding is the only time he really receives any liquid, though one can argue that there is liquid in fruits, veggies, etc. However, he must begin to actively drink for us all to feel comfortable not using his g-tube. The prospect is quite exciting!! Please add his drinking skills to your prayer list. He can take a sip, but needs to work on controlling the liquid in his mouth. A lot of the time it catches him by surprise and he coughs/gags on it.

He continues to do well with purees and was able to eat eight veggie straws. (They are made from vegetables and are shaped in tubes. They are similar to veggie chips and melt quite quickly in the mouth.) It has been more than exciting to not use his tube during the day! He continues to work on table food. I have some recipes that I am going to try to blend up for him. He tried cottage cheese the other day, but it was too chunky for him to maneuver.

During most meals I feel like the boys are twins because they are essentially at the same level orally. (Actually, Carter is more advanced.) But, when they both have yogurt in the morning, I switch between boys as I spoon feed them both. (Ethan's mechanics fall apart a bit when he tries to feed himself.) There are a few differences depending on which boy I am feeding. Ethan uses a toddler size spoon, whereas Carter used a baby spoon. When putting the spoon in Ethan's mouth, I gently depress his tongue to remind him that when eating off of a spoon, proper technique is to push down on the tongue. Carter doesn't need this physical reminder since he meets the spoon as it comes into his mouth. Sometimes Ethan needs a reminder to close his lips around the spoon. But, he continues to improve with each meal!


We finally turned on the sprinklers. Ethan LOVED it!


I got him a sprinkler, but I wish I could find the "old fashioned" fan sprinkler. This one is a little crazy!!