Chatter

I finally got this to load after a full day of working on it! He has had more and more to tell me.

Chatterbox

Ethan has become quite the talker. I enjoy listening to him talk throughout the day. I especially love waking up hearing him talking to his animals. We are trying to get him away from signing now and used to using his voice to communicate. He has four words at the moment, which I guess is good considering it hasn't even been a month that he has had his trach out. He also has about 26 signs, so he can communicate most of his needs.

He has figured out the concept of vocalization to get my attention and then will often fall back to signing to tell me what he wants. For example, he has been much more interested in climbing on his slide, but gets stuck after he climbs to the top. He will loudly protest from the next room over to let me know he needs help. When I ask him what he needs, he will sign help instead of saying it. But, I am hearing new combinations of consonants and vowels.

I am trying to record him talking, but sometimes he gets shy and won't talk when others are present or when I get out the camera. Hope to get something on tape soon!

Nebulizer

We just started using the nebulizer with Ethan. While he wasn't thrilled the first 2-3 minutes, he did just fine after he got used to it. He was smiling and playing throughout the treatment. Because he has two meds, it takes close to 25 minutes for the treatment to end. It works to start the treatment and then give him his tube feeding in the morning. I haven't figured out the best set up for the evening yet, but I will work on it.



The nebulizer is quite small and fits in your hand.


Yes, our child plays with syringes...he likes to play with medical equipment.

Rockies Game

All three of us went to the Rockies game this afternoon. It was an event for my work and we thought we would give it a try. Keep in mind that the last game I took Ethan to was last summer and it didn't go so well. He was so afraid of the noise plus I had the oxygen tank, suction machine and diaper bag to carry with me. Craig had been traveling, so a dear friend came along for the game. I remember leaving the game wondering if Ethan would ever be able to tolerate the loud noise, especially having been a preemie baby where noise and other sensations can be rough to take long after they leave the hospital.

What a shock we had today! First of all, we only had Ethan and one bag. That was easy. Secondly, it was windy and chilly. Neither which, however, bothered Ethan in the least bit. The best part was that he LOVED it! He couldn't stop dancing to the music and clapped his hands throughout most of the game. When the loud music would stop he would sign "again." The best part for me was during the cheering after the Rockies hit a home run. Everyone stood up and Ethan was laughing and dancing with the rest of the crowd. It brought tears to my eyes to see him so normal. I will say that Rockies games are quieter compared to any other major league baseball game I have been to. When we had gone to the Cubs vs. Rockies game last year, it was much, much louder and that would be those Chicago fans livin it up.

It was such an exciting time for us, but especially for me. I love baseball and yes, the Cubs have my heart and always will. But, it is sharing it with Ethan (and soon to be baby #2) that makes it even more fun for me. Now that I know Ethan can handle it, I can't wait to go to another game this summer when the Cubs are in town. (We already have tickets!) And, maybe, just maybe, Ethan will be eating some food orally by then and he can enjoy all the scrumptious (albeit unhealthy) food the ballpark has to offer. But that is part of the fun, right?! (Nachos were consumed today.) :)

Little escape artist

I heard him talking in his bed. It was his normal time to wake up, but it is Saturday...a day to sleep in. (Apparently I failed to discuss this with Ethan.) Even as a child I never woke up early--if I don't say so myself, I was the dream child when it came to sleeping. I slept A LOT. I still love sleep. I used to put myself to bed, even as a toddler and even if we had company. My mom finally had to take away naps because at 4-years-old I would still take a 3-4 hour nap. My brother, on the other hand, was the exact opposite. But, back to my story....

Again, I heard Ethan and I love waking up to hearing him talk. If you watch him on the monitor you will see him waving to his animals and talking to each of them. He has been doing a good job with staying in bed, with the exception of one thud earlier this week. Apparently though, he didn't feel like waiting one second longer this morning. As I was slowly (emphasis on slowly) thinking about getting out of bed, I thought I saw something down the hallway. Sitting up, I was able to confirm that yes, I saw what looked exactly like my child...in the hallway...not in bed. I woke up Craig and told him, you have got to see this.

Ethan managed to find a small corner to crawl out of bed while still wearing a nasal cannula taped to his face, a pulse ox strapped to his foot and his sleep sack. Surprisingly, the pulse ox didn't alarm until after he took it off. When we got up, he had gotten the nasal cannula and tape off of his face, taken off his sock, posey (a felt strap that goes around his pulse ox probe) and his pulse ox probe. And, he descended a few stairs while still wearing his sleep sack, which would be the same as walking in a pillow case. Both Craig and I drowsily walked into the hallway, where Ethan came around the corner and smiled...clearly proud of his new accomplishment.

Oh boy....


Ethan just waking up in his bed. You can see the older dresser on the right. He got out through the small opening between the dresser and the bed rail.

PJs

Poor Ethan was cold last night. His new room has two external walls, one of which is a bay window. I got up in the middle of the night for my normal bathroom break and went to check on him. His little ears were cold. Here is the thing about pjs--they have to be one-piece snap pjs because of his pulse ox and g-tube. We have to be able to hook up a night feeding and address any g-tube issues in the middle of the night, should they arise. That means that wearing zipper pjs doesn't work because both the pulse ox and g-tube would have to be coming out up by his neck. I am sure that would not be very comfortable either. Two piece pjs don't work because his g-button could get caught on something and snag, thus causing us real problems should it come out of his stomach in the middle of the night. Not to mention that he doesn't care if it comes out (even though it is like yanking out a catheter) and won't cry or alert us. (Clearly his pain tolerance is too high.) If we put him in a onesie and then two-piece pjs, that could cause a problem when there is a problem with the feeding because we would have to remove his pants, etc.

Ever try to find one-piece snap pjs for a baby over 12 months? It is hard. However, after many searches, I have found one store that sells them up to 3T and they sell summer ones as well. So, Ethan wears his snap pjs and then sleeps in a sleep sack, which nicely enough, zippers from the top down so that the pulse ox can stick out, as can his long g-tube (we have a night size and day size). We can't zipper it all the way, but it acts as a light blanket. I have never found fleece pjs at this one store, so those aren't an option. Plus, when he was in the other room, it was an internal room with the humidifier running, which kept the room piping warm.

I put a small quilt over him last night and I hope that he slept comfortably. Right now we have two humidifiers running in his room--regular ones that you can get at the store. The first is mainly for noise, while the other is a warm mist to help heat up the room. Personally, I have a little internal heather myself right now, so I am not a good judge of hot vs cold. :) But, hopefully he will stay under the quilt and his little ears will stay warm. Oh and, no tears at all now!! Not even a whimper about his new bed! It hasn't even been a week and he seems perfectly fine with it.

Pick up

This was all the equipment I was able to give back to the oxygen company today! It was so wonderful to see it taken out of our home. I am trying to figure out if I can donate some of the other equipment that isn't considered durable medical equipment. Normally as soon as it is in a person's home, the company can't take it back. For example, the box in the background, that has tubing overflowing out of it, is filled with non-durable medical equipment that can't be returned.

In case you are curious, the bags on the left are two suction machines--we had one with us at all times. The machine in the middle is the oxygen concentrator. (Now we just have tanks.) And the items on the right are the humidifiers--think air compressor as far as sound.

Big boy bed update

Ethan is doing great with his new room and big boy bed. In the last few days, there has been a few tears, but nothing terrible. Normally if I turn him on his tummy (his preferred position--and mine!) and rub his back, he drifts off to sleep. This normally takes about 3-5 minutes. Both Monday and Tuesday night he cried, but tonight was barely a whimper. I don't mind if he sits in his bed for awhile until he puts himself to sleep. We purposely have not taught him how to get out of bed, so he is treating it like his crib at the moment.

I am very proud of how well he is doing! We did put an old dresser of mine at the foot of the bed, which is where the dresser that matches his set will go once we get to that. (But for now, I would much rather have a changing table! We never had one for Ethan and after not having one, I would love one this time.)

I will take a picture soon and post it. I was able to move all of Ethan's clothes to his new closet and finish hanging all of the baby clothes up in the nursery. The bassinet is ready to go as well. I am excited because we never were able to use the bassinet with Ethan. It is kind of nice to have a few things for the baby that are new, even though we have had them for awhile. I am getting to the end of my 35th week! It is very exciting!

Big boy bed

Last night we moved Ethan to his big boy bed, which is also in a different room. It was sad...for me. I didn't know if I was pushing his too far too fast. I mean, he just turned two! But, with baby #2 about 5 weeks away, we needed to get moving on the transition. Granted #2 will be in a bassinet for a little bit but the last thing I wanted to do while I am completely sleep deprived is move a 2-year-old into a bed. Plus we didn't want to purchase another crib. Not to mention, Ethan tried to climb out of his crib last week. I saw him on the video monitor with two hands on the top rail and a foot up there as well. He had piled his animals on top of each other to form a step.

We had moved many items into Ethan's new room awhile ago and we spent a lot of time in there. He was exhausted yesterday because we went to a birthday party and he replaced his normal two hour nap with a 10 minute one on the car ride home. (I HATE when that happens!) But, I think it worked to our advantage last night. He was so tired by the time he went to bed that after reading and snuggles, he laid down and fell asleep before I could finish giving him his evening meds.

He looked so tiny in the full size bed. (We already had the mattress and didn't want to buy another one.) His animals lined the bed and now there is actually room for all of them, plus Ethan. We thought it was going to be a long night of him waking and not wanting to be in the bed, but he slept soundly and woke at his normal time this morning. However, Craig and I didn't sleep well at all--both waiting for the "thud" when Ethan fell out of bed or the cry for when he wanted us. The set up we have is pretty good and of course, we have an extra long bed rail. Pillows also lined the floor. We had been waiting to see if he would be decannulated because I didn't want to move extra equipment if I didn't have too. The oxygen tank fits well under the bed and can be tucked far enough that if Ethan falls (or jumps) out of bed, he won't land on the tank.

It was only night one, so we will see how this goes! But, I can get his old room completely ready for the baby and that is very helpful! Plus, while doing so, I can celebrate (and also cry about) the fact that my baby is now such a big boy.

Germs

Yes, I am the mom that wipes down the table at the restaurant with Clorox Wipes. I am also the one who wipes down shopping carts (though I hardly ever take Ethan to the grocery store) and keep Sani Wipes (an awesome thing) to wipe Ethan's hands down constantly. (Sani wipes are the same as the hand gel, but in a wipe form, easy for a 2 year old to use.) I also put a disposable place mat down on the table at restaurants. This actually serves two purposes...not only does it entertain Ethan, but it is a clean surface. We wash our hands more then I can count in a day.

As I wrote the other day, I don't let Ethan sit on the exam tables without a clean (my own) blanket from home underneath him. I don't let Ethan play with toys at the doctor's office or at other places because, well, sick kids play with them too. I always have some toys for him to play with and if one hits the floor (mainly at the doctor's office) then it is put aside to be cleaned when we get home. (Actually, all the toys we bring anywhere get cleaned when we get home.)

I wasn't always a germaphobe. I do take a lot of slack for being the way that I am. But, with the exception of one illness this past fall, so far I have been able to keep Ethan healthy. I will be the first one to admit that the body needs to be exposed to some germs in order to build up its immunity. However, that same body has to be able to fight those germs without it causing the body increased risk. Once you experience having a child on a ventilator, you never want to go there again. For the vast majority kids, a cold/virus won't put them into the hospital for a short stay--they can fight it from the comforts of their own home.

At Ethan's last appointment, I was told that after Ethan turns three, he should be able to fight off a cold like any other kid. But, that is another year from now and another cold/flu/RSV season to get through. He will be recommended for Synagis even next year and, considering his medical history, will probably qualify.

The funny thing is that it doesn't bother me at all. Though, I get looks from others, so I think it bothers them. Do I enjoy being neurotic about germs? Not particularly, but it is what we have been doing since Ethan was born so it is a part of our lives. Spend any time in a NICU (or any other ICU) and it will be ingrained in you how quickly and easily germs spread. Anything that hit the floor was thrown instantly in the wash or trash. Precautions were always taken to keep the babies healthy.

So, yes, Ethan is older and stronger. He can endure more. But, he still is not to the point where his body will defend itself the way a healthy child's body would. Because of that little bit of extra tissue in Ethan's trachea, if he were to get a cold and his trachea were to swell, we were told that we might need to be make a fast trip to the ER for epinephrine to open his airway. (Though we would most likely see signs well before he got this bad and could just use some strong steroids.)

Will I be less cautious with baby #2? I don't know. As long as he puts his hands in his mouth (something Ethan still does) I will honestly be a little neurotic. I could say that I won't be, but I think I know myself too well. :)

Easy

According to Merriam Webster, easy is defined as:

1 a : causing or involving little difficulty or discomfort b : requiring or indicating little effort, thought, or reflection
2 a : not severe : lenient
3 a : marked by peace and comfort
5 a : giving ease, comfort, or relaxation c : allowing freedom of movement

While I did take out about half of the different definitions, the ones left are very much an example of what our lives are like now. I thought of that today as I was walking Ethan into TCH for his follow up appointment. I watched a mom lug a heavy wheelchair out of her minivan and realized that life for them may never be easy. They may never experience the ease of life, yet I would venture to bet, she is happy for every day that she has her child with her.

Every single day I find things that are now easier and different. Just going to see the doctor was so simple today. I had my purse, a small blanket (I don't allow Ethan to sit directly on the exam table--an entry about germs will be coming soon) and, of course, Ethan. That was all.

I have been having a hard time putting into words how thankful I have been feeling lately. Part of it makes me feel guilty because I am SO thankful and don't know how to adequately express it. I am comforted by the fact that God knows my heart so that I don't have to try to find the right words all the time. I can't begin to express how blessed we feel. How thankful we are for what He has given us.

Ethan had a good follow up appointment today. His pediatrician was extremely pleased with how well Ethan is doing sans trach. We do have Ethan on oxygen at night (1/16 liter flow) and our doctor agreed that we should slowly wean him at night. Ethan hasn't been requiring oxygen during naps, so it really isn't that big of a deal to hook him up at night. And, he doesn't try to take the nasal cannula off, so that is helpful. We will be moving to a nebulizer as soon as the oxygen company can deliver it. Otherwise, all is fantastic! :)

Happy 2nd Birthday Ethan!

I can't believe two years has flown by already! As I have said before, sometimes the days seem so long, but the weeks go by so fast. We had a great day celebrating Ethan's birthday as a family. I am still planning a little party for him in the coming weeks. He had the concept of opening gifts a little more compared to Christmas and was very excited to open each one. It did take some time and after a good nap, we all enjoyed the beautiful weather outside. Many of his new toys are perfect for time spent outdoors!

I have been told that I make a big deal over birthdays--maybe too big of a deal at this age. But, I think birthdays are worth celebrating. When you have a child like Ethan (or any with medical issues) you realize that each birthday is a gift and is not a guarantee. After the year he has had, I think he deserves a big deal!

God has truly blessed us over these past two years. I look back at everything He carried us through and I am reminded of His grace and love. I can't thank Him enough for giving us Ethan and for showing His faithfulness every single day.


A few days after birth


Turning 1


He loves his Cozy Coupe for his 2nd birthday

Little Hearts Luncheon

Today we had the wonderful opportunity to attend the Little Hearts Luncheon. It is a fundraiser for the Heart Institute at TCH. We were personally invited by Ethan's surgeon and joined him at his table. After the silent auction (we were outbid on a few items), there was a delicious lunch and then the sweetest fashion show ever. Previous cardiac kids were escorted by doctors, surgeons and firemen. They were so adorable!! Maybe next year Ethan can be one of the models.

It was neat to see Ethan's surgeon outside of the hospital and it is a wonderful cause. A local TV anchor (Kim Christiansen from 9News) hosted the event. Ethan did well despite the fact that it went completely through his nap time. He sat nicely and had a good time being a little ham for those who were with us. Ethan's doctors normally see him in the hospital, so I think it was nice for them to see him outside and doing so well.

Speaking of, Ethan has been doing great. Last night his alarm did ring because his saturation level went too low. We have the lower threshold higher then normal because we are trying to make sure Ethan can sleep without oxygen. And, while it is clear he can handle a full day without oxygen (many commented on how pink he was today) I just got back down from hooking him back up to a tank. I don't know if it is the actual pulse ox that isn't picking up accurately or if it is Ethan. (Certain times I think it is the unit, other times, I just don't know.) After going up and seeing him around 88/89% I decided that we would hook him up to a tank for the night. The flow that he needs is quite low--about 1/8 liter flow--but I figure that it is better this way.

Craig and I were talking last night about how Ethan has never done anything "cold turkey." We have always had to wean him slowly and whenever we have changed things (medically speaking) abruptly, he reacts and has a hard time. While he wasn't happy that we woke him up by putting a nasal cannula on his face, he has since kept it on and fallen back asleep. We will work on weaning him slowly and see if that helps. The only other challenge right now is giving Ethan his inhaler. We don't have to physically restrain him like we were the other day, but he only gets one deep breath per puff. (I don't think that is enough.) The hope is to get Ethan on a nebulizer instead because he doesn't have to figure out how to time his breathing, etc. Plus, I don't know if not getting his normal dose of his inhaler is also contributing to his lower saturation at night.

Overall though, Ethan is doing great. He is loving life and has become very silly. Driving home from the luncheon, Ethan fell asleep and it was odd for both of us not to be able to hear him breathing. At the same time, he looked so comfortable!!

The new "normal"

WOW, this is easy. And, it has been so abrupt--just like how Ethan started his little life. I went to the store today with Ethan and only took a purse. Nothing else. That was simple. So many things are different already. For example:

--I can no longer locate Ethan based on the sound of his breathing.

--He has not needed ANY oxygen since a few hours after his decannulation.

--He now has mucus in his nose and when he cries, gets a runny nose--that never happened before.

--He has more endurance and doesn't stop to catch his breath

--He isn't throwing up like he used to

--He seems not to reposition himself at night as much since he doesn't have tubes in the way

--We can go out in the wind and it doesn't matter

--The cold weather is no longer a factor

--He can touch his chin to his chest

--I can spray hairspray with him in the room

--We can now dust and vacuum with him in the room

--I can leave the suction machine, oxygen tank and resuscitation bag at home when we go out

--Since the oxygen doesn't seem to be a factor anymore, I can light a candle and now he can have a real candle on his birthday cake!!

The list goes on. I will be sure to keep sharing the changes because I think they are so wonderful. Yesterday Ethan pointed to the bandages on his neck and then signed, "all done."

Videos

Below is the video of Ethan's decannulation. He wasn't upset about the trach removal at all. He was still waking up from the anesthesia and was upset that I had put him down after holding him for a few minutes. I had to cut the video short in order to get it to load, but the key part is there! :)



I had purchased a surprise for Ethan and gave it to him after his trach removal. He was so excited! (I had to cut this one short as well.)

Overnight

It was a long night, but everything went really well! Ethan did wonderfully and had no problems sleeping without his trach. And, very surprisingly, he has been without oxygen since yesterday evening. He did fine overnight without it. Of course, that meant that I didn't sleep for all but two hours last night because I was watching his pulse ox levels wondering if he could truly sleep without oxygen. Not to mention, add in being 33 weeks pregnant and sleeping on a bench, plus RT and nurse visits. Ethan woke up a few times upset seeming a little disoriented as to why he wasn't at home. I will be curious to see how he saturates tonight because he will be in his own bed without interruptions and I am wondering if sleeping harder will increase the need for oxygen.

Interestingly, Ethan had to sleep with his head right next to the sound machine I brought. I had the ocean waves running all night because he is used to so much noise when he sleeps. I had put the unit at the foot of the bed, but it didn't take him long to crawl over to it and sleep right next to it. We will have to work on weaning him from the noise of the humidifier.

On of our biggest challenges was giving him his inhaler using the mask over his face instead of using his trach. We had to restrain him to give him his puffs. Hopefully we can refine this method and Ethan will get used to having to receive his meds in a new way.

His voice is a little louder and he carries his sounds longer. We were told today that it will take about 4-6 months for his voice to increase in volume. We were also told that it is imperative that Ethan not get sick for awhile because of the extra tissue in his trachea. Should that get inflamed, it could close off his trachea and he would be in severe trouble. He hasn't seemed to care at all that he doesn't have a trach anymore. I changed the dressing this morning and the stoma is only as big as a pin hole! The skin has almost completely come together, even though it may take a couple of months for the cartilage to grow back. That means we can go swimming this summer!

We have noticed that Ethan is a drooling machine right now. I guess that is perfectly normal as he acclimates his body to using his upper airway.

As we were walking out of the hosptial, I kept telling Craig that I couldn't belive it. And, I can't. It is amazing to think of how far Ethan has come and the many obstacles he has overcome. We were always told that one day Ethan would be decannulated, but until it actually happened, it didn't seem true that it could.

I hope to shorten the videos we took so that I can post them. I want to work on that later today. We got home not too long ago and fed Ethan. I hope he will take a nap because I desperately need one (Craig could use one too)!

What a birthday present!

What a great day! We are up in Ethan's room on the pulmonary unit. We have been up here for a few hours now, however Ethan has been very attached, but is now laughing and playing. After the bronch, when we first saw Ethan's pulmonary doctor, my heart sank. I was trying so hard to read the look on his face as he approached us from across the room. I said, "uh no, no good?" He said, "not at all, it looks nice and open!" It looks no worse than the last bronch in December. That is when he told us that he hadn't removed the trach yet because he was going to let us do the honors!

We were escorted to the PACU (post recovery area). Ethan was not thrilled, as expected, because he was still waking up from the anesthesia. I cuddled with him briefly until I put him back on the bed and got to do the honors of removing his trach, once and for all! We were able to video tape the entire thing, but it is too big for me to load on this site (I have tried 3 times because I want to show everyone!). He did fine and was so distracted with not wanting to be there that he didn't care about having his trach removed. We went back to cuddling for another hour. We got up to our room and have had a few visitors from the hospital.

Word spread quickly that Ethan's trach had been removed and nurses, therapists and our cardiologist stopped by to offer congratulations. At this point we have turned off the oxygen and he seems to be doing fine. He will probably need it while he sleeps though. However, he doesn't even care about wearing a nasal cannula! I had them cut off the prongs that stick inside the nose and after that he hasn't touched it. He is wearing it right now, even though he isn't getting oxygen, because I didn't want to press my luck with taking it off and then putting it back on in a few hours.

The big test is sleeping tonight. His doctor did find some extra tissue in his upper airway and, while his trachea stayed open without the trach, there is always a possibility that it could collapse while Ethan is in a deep sleep. If that happened, he would have to be trached again. Please continue to pray that his airway stays open and that he has no problem sleeping tonight. He does not have to do a sleep study, so that is good.

In the morning, if Ethan has a good night, we will be able to go home first thing. Right now he just has gauze and tape over the stoma entrance. He seriously doesn't seem to care in the least bit.

We are in awe of the events that have taken place today. We can't believe he has been decannulated. I mean, wow, really?! Life already seems so much more relaxed. We feel so blessed that God has given us such a blessing. He is so faithful and has been faithful the past two years. Ethan's 2nd birthday is Saturday and my birthday is next Monday...I don't know for whom this is a bigger birthday gift!

This is Ethan about one hour after he was decannulated. He was feeling better and playing with his cars.

I have been trying to get a second video to upload, but it is taking forever. I will keep trying, but I wanted to update everyone!

Decannulation!!

Ethan's trach came out!! Ethan is dozing in and out, and is currently responding well. We will be moved later from recovery and will be monitored for 23 hours.
Details to come... stay tuned.

Happy Easter!

We hope you all had a wonderful and blessed Easter. We went to church this morning and it was a wonderful time. We both miss it so much. There were chairs set up in the way back, next to the door, and we were able to sit inside the sanctuary. Ethan loved the music and danced in our arms the entire time. It was so refreshing to hear a sermon (well most of it for me--Ethan and I had to take a short walk) and to be among so many believers.

After the service, our pastor walked by and, after some small talk, asked us our last name. We told him and his eyes lit up as he shared that he has been praying for our family for quite some time. Craig shared about the potential decannulation tomorrow and our pastor prayed right there and then with us. It was really touching.

Back at home I made a quiche for lunch and then started on Easter dinner. The afternoon was filled with Easter baskets, hunting for two Easter eggs (I figured that was plenty for Ethan) and dying Easter eggs.

Tonight we changed Ethan's trach for what we hope will be the last time. It is really hard not to get our hopes up but to remain realistic as to the fact that it may not be God's plan to decannulate Ethan right now. Do we hope it is, yes, of course. This will be the only time you will hear me say that I really want to spend the night in the hospital because that means the trach came out!

I have everything packed, along with a few surprises for Ethan. The bronch is scheduled for 11 am. It could easilyget moved back because any emergency procedure will bump us back. I will try to update the blog as soon as I can, but keep in mind that Ethan will probably not be a happy person whether the trach comes out or not. We know so many of you will be lifting us up in prayer and we can't thank you enough. My goal will be to update as soon we know something. :)



Lookin sazzy


Most of the items in E's Easter basket are perfect distractions at the hospital.


The Magna Doodle was a hit!


Dying Easter eggs

Experiment

Ever wonder what it is like to breathe with a trach? Well, when you have some time, grab a straw, plug your nose and breathe through the straw in your mouth. You can't cheat with an extra large straw! Try going up and down some stairs, picking up the pace as you go. (Do me a favor and don't faint though.) Try to see how fast you can go, while only breathing through the straw. At first, you may not feel a difference, being able to oxygenate your body without a problem. However, once your heart rate gets up, you will find it harder to feel as though you are getting decent amounts of oxygen.

That is what life is for a person with a trach. So, imagine now, you get sick and have to breathe through the straw, but your lungs are a little junky.

If Ethan does get his trach out on Monday, I imagine he will experience a whole new feeling of relief when it comes to breathing. We are praying for God's timing and that Ethan can have his trach removed for good. We do however, know that God's plan is the perfect one.

Knuckles

Ethan loves watching videos of himself. We have watched this one together many times and he finds it hysterical.