Not very graceful but...

This afternoon I was working away, grading papers, while Ethan was playing on the floor. He had had his AFOs on most of the afternoon, but then I took them off to give his little legs a break. I looked up from my grading to see Ethan walking across the room with his little walker!!! I was shocked! Earlier in the day he was side stepping along the banister, but I didn't think he quite had the balance and control for the walker just yet! I am so excited!! :)


You will probably notice that he doesn't bend his knees much and he pronates his feet. The AFOs will help correct that.

Pictures

Have a wonderful day! :)


The chair was my gate for a day because I tripped on the old one and had to get a new one. This worked for awhile until Ethan figured out he could move it.


It has been a little chilly during our morning walks.


Here Ethan is at the end of his rope...literally. The 50ft tubing won't stretch any farther. Sometimes it looks like he is on a treadmill--his feet and arms try to keep crawling, but his body doesn't go anywhere because he is held back at the neck by the trach mask.


Poor Maverick....


Right before we left the NICU, one of our great nurses gave Ethan this outfit. It is size 18 months and I remember thinking that he would never be that big. Now it fits! I think this may constitute as one of those "show the girlfriend pictures." :)


SO BIG!

Naps

I think every mother laments the day when her baby moves to one nap. Gone are the days of a morning and afternoon naps. And for me, since I work from home, those were the times that I could concentrate the most during the day. The other reason I miss Ethan taking two naps is because that was also the time I could tend to the household chores. Vacuuming, dusting, floor cleaning, etc., can't be done with Ethan in the same room, so it was helpful when he took two naps.

Since he has a trach, he has a unobstructed route straight to his lungs--no filters like we have via upper airway. So, if I dust or vacuum in the room while he is in it, everything that would get stirred up would have the ability to enter straight into his lungs. Plus, some of the chemicals (nothing dangerous, but ones you commonly use around the house) would also wreak havoc on his little lungs if he were to breathe them in. If someone looked in my windows during that small amount of time Ethan is sleeping, they might think I was a crazy person running around to accomplish everything!

But, even though I lament the one nap stage, it is better than the no nap stage!! And, it is a reminder of how quickly Ethan is growing up. He isn't as tired since his surgery and that is another blessing! Breathing is easier and we hope that means the surgery worked. As of today he is back to his baseline for his oxygen requirement! Today I also learned that he can stand up in the stroller. Plus, this evening, he was briefly standing by himself (without the aid of AFOs), clapping as he did so.

I will be honest that it was hard for me to have Ethan get his AFOs. I guess I just wanted something to come easy for him. And, while he won't need them for the long term, it is another thing that makes him different. As I was falling asleep last night I was thinking about being different. My thoughts turned to the fact that Christ sees Ethan as His perfect creation. To Him it doesn't matter that he receives nourishment through a tube as well as breathes through one. It doesn't matter that he has leg braces. What He sees is Ethan's heart. And, boy, what an amazing heart that is! If only we could all look at people the same way.

AFOs

Ethan received his AFOs today. He tried them on yesterday, but a few tweaks needed to be made. They are paired with the shoes provided, which are a little clunky. I thought he would have a hard time adjusting, but as the video shows, he crawled right over and pulled himself up. This past Tuesday Ethan decided that it was time to pull himself up on a regular basis. It just clicked again. I have to say that it is so interesting how babies do things--once it all clicks, they have it. His only problem is that he doesn't know how to get back down once he stands up.


Checking out the new AFOs




The shoes are the ones that come with the AFOs.


They are so little!

Playing with Maverick

For awhile now, Maverick would drop his toy at Ethan's feet and just look at him. And, Ethan would just stare back. Recently however, we have been trying to get Ethan to play with Maverick. He enjoyed throwing the ball to Maverick the other day.

October will be our doctor month. We have visits planned with our pediatrician, cardiologist and pulmonologist. I don't have the bronch scheduled yet, but will let you all know once I do.


Reading his Jesus Loves Me book.


Ethan has figured out that we have two entrances to our kitchen. One has a gate, while the other does not. He found the staircase in the living room and made the "oops, I got caught" face when I said his name.


Talking on the phone.


Playing catch with Maverick.

So big

Watching Craig mow the lawn.





Playing the "how big is Ethan" game.

New Recipe

I was lent a book dedicated to tube fed recipes. I do like the recipes the book has much better compared to the one I currently have. Ethan has been losing weight the past two weeks, but we don't know if it is the food or the fact that he is still on a hefty dose of lasix. Not to mention he seems to have gotten taller recently. The new recipe calls for fruits instead of fruit juice. I personally like this because it takes away the empty calories for him. And, I don't have to add the tablespoons of corn syrup, which just seemed a little odd anyway. We will see how it goes!

Ethan has continued to go full speed ahead! He is non-stop. I have some pictures that I will put up soon. He loves to explore and loves trucks. If he is in the car and we start to pass a truck, nothing takes his eyes off of it. He has recently learned how to give kisses and loves to cuddle. :)

AFOs

Today Ethan was fitted for his AFOs (Ankle-Foot Orthosis). The AFOs will help Ethan use the proper lower leg positioning for walking. He tends to hyper extend his knees and turn in ankles out. We have tried some other steps first, but it seems that those interventions did not help.

The gentleman came and made a cast out of fiberglass from Ethan's knee down to his toes. It was cut off after he manipulated it into the correct mold. He will pour casting material into the mold to make a replica of Ethan's lower leg. We get to pick the colors and they even had sports teams. (Although, I was disappointed when I didn't see the Cubs as an option.)

This is not a long term thing. It will probably be a few months though, while Ethan gets used to wearing them and used to correctly using his lower extremities. Since his surgery he hasn't been pulling himself up as often and, in the beginning, the AFOs will make it a little more challenging for him to do so. But, I am confident that he will be a trooper and will pick it up quickly!

Doing well

Things have continued to go well with Ethan. I have been able to turn down his oxygen now and we are close to his baseline. Once we are there, I will be curious to see if he can go lower and come off of oxygen during the day. (It may be some time before he can go without it completely.)


After his haircut.


Swinging with his friend Madelyn.


He really wanted to hold her hand.


His naps are still way off (but nights are better) so he finally fell asleep half sitting and half leaning on his bunny.


Getting ready for our morning walk.

Humbled

When we were walking out of TCH, after Ethan's surgery, I had tears of joy in my eyes. I couldn't believe we were going home already. It was late enough in the evening that the normally bustling foyer of the hospital had calmed to a relaxed state. Most people had gone home for the evening.

We returned a little over a week later and I was reminded, once again, of how blessed we are. If you look closely during the day, you will see the heavy and weary eyes of the parents who have spent days, weeks, months and even years at the hospital. They smile for their children and try to mask their worried, tired eyes from countless sleepless nights. You may have not thought of this, but there are some kids who have their first birthday at the hospital and on rare occasions, their second. You will pass numerous children being pulled in wagons; their sweet hairless heads share the story of cancer. Sometimes you will see the stable kids standing on the i.v. poll as their parents push it around...anything for a smile.

Every time we go for a visit, I am reminded that we spent 7 months there, but that we got to go home. We are truly blessed. And, while it is not easy and it is a lot different than having a normal, healthy child, it is our life. Ethan is worth every ounce of energy it takes to care for him. Here is the thing though, it can always be worse, always be harder, always be more challenging. God has blessed us immensely and we are grateful for His provisions and healing hand. While we still pray for Ethan to be completely trach and oxygen free, and ask that you still do as well, we remember that there are others that need to be lifted up to the Lord as well.

Homemade formula

This past week I introduced Ethan to the organic homemade formula. There is a recipe that I follow to make sure that the formula has all the essentials: fruit, veggies, meat, dairy, etc. I have to say that the smell isn't great, but it beats vanilla! He seems to be doing well with it. I still alternate with the canned formula, but for the most part, he gets the homemade formula. It does take more time measuring, making and blending all of the ingredients, but I think it is the best option for him. Supposedly the homemade formula encourages kids with oral aversions to want to eat...we will see!

I am trying to get a picture of Ethan's new haircut, but he hasn't been still for the past few days. I will keep working on it!


Here are all of the ingredients. I chose to do all organic and also changed the vegetable oil to extra virgin olive oil. I have to say that it was odd to pour in a tablespoon of corn syrup! This produces 1000 calories and is sufficient for a days intake of food. I will alternate the veggies, meat and fruit juice to give him different flavors. And, yes, that is a Flintstones Vitamin you see there--all part of the recipe!


Ethan was very helpful, especially when he got a hold of the sweet potatoes!

1st Haircut

I didn't realize it had been so many days since my last post. Sorry about that! Today Ethan had his first haircut. He looks more like a little boy now, instead of my little baby. I made an appointment at Cool Cuts for Kids. It was important to us that Ethan enjoy himself so that he doesn't associate every event he has (with strangers) to be one that may hurt.

This place is made for kids. He was able to sit in a firetruck and watch a video while he had his haircut. I was very impressed with the stylist as she was able to continue cutting when he started dancing! (See video below.) I think it is worth the cost for the fun experience!

Baths

It has been quite a chore bathing Ethan. The abdomen incision has made it difficult to put him in his baby bath tub. The fact that we can't lift him from under his arms means putting him in his bath seat doesn't work either. (I found out the hard way!) And, while he sits completely by himself, with no problem, I am nervous he may slip in the regular tub--leading to one of us catching him--and it may not feel too good. He has not been a big fan of sponge baths either.

So, while I cringe at him being in the kitchen sink (I don't know why), that is what I tried tonight. After I scrubbed down the sink I put him in. At first he was not a fan at all! But, he loves baths so I think the fact that he was able to be in a tiny bit of water won him over. Plus, Craig came home right as I was starting and that made Ethan happy. I will say that my back feels much better not having to bend over and he can't fall backwards, so that is helpful. (He is looking a little big for the sink, so it won't last much longer--hopefully he will fit for another 6 weeks!)



The cute blanket was a gift from our surgeon.


"I know I am cute!"


In the sink (That is A1 Sauce on his face!)


Crazy hair!


You can see his scar. I didn't know how people would feel about seeing the staples, so I didn't put that one up.


The faucet was a hit!

Staples

Poor little guy. It was a rough day for him. He did well with the x-ray, especially since the nice tech allowed Ethan to sit up. (He still has major meltdowns if we make him lie down.) The beginning of the appointment went well, with our cardiologist telling us he thinks Ethan is doing great. He said that he can't hear a leak in the new valve at all! Ethan's x-ray showed some junk in his right lower lobe, meaning that he will have to stay on the lasix for another month. Overall, everything looks great! :) We are so thankful to God for such a fabulous news!

Then the time came for the staple removal....
I gave Ethan some Tylenol about 40 minutes beforehand to help with the pain. It took a couple of us to hold him down and a nurse to take out the staples. The problem was that some of the skin had grown "into" the staples and some staples had rotated, causing a lot more work to get them out. Plus, the ones in his neck were located at a sensitive area, not to mention the ones that literally went up to under his trach. He hasn't been that hysterical for that long before. He exhausted himself. Once they were finished I picked him up and he was asleep in my arms before he rested his head on my shoulder. The good news is that the incision is healing great! And, before we were done, our surgeon stopped by and took the last few out. It was nice to see him as we normally don't see him that often. (Which, I guess, is a good thing.)

Ethan slept all the way home and then went straight to sleep in his crib when we got home. Last night was a little better and we hope that he will sleep through the night tonight. We keep praying that his right lobe will clear up and that his bronchi can stiffen so that his trach can come out soon.