Answers

img083
Originally uploaded by awesome_mom2061.

Evan goes upstairs to go to bed for his nap. Why he says apple juice instead of upstairs I have no idea.

He likes it when mommy tickles his feet. He will actually ask me to tickle him, it is too funny.

An octopus is an animal and so is a llama.

He likes to vacuum the kitchen. This one was an easy one I threw in.

One of his favorite trains is named Mavis.

He likes to wear sandals outside.

Another cute Evanisim that did not make it to the list is the name of his physical therapist. He calls her Yaya.

The picture is of a bunny. I am sure that you could have figured it out eventually. Click on the photo to see my notes on which parts are where.

Evanisims

See if you can guess the meanings of these Evanisims.

Evan goes apple juice to go to bed for his nap.

He likes it when mommy pickles his feet.

An optapas is an animal and so is a llula.

He likes to baccume the ketchin.

One of his favorite trains is named Beebis.

He likes to wear mammals outside.

You will get the grand prize if you can guess what this picture is of. I was there when he drew it in nursery and I can assure you that he had a clear plan in mind as to what he was drawing. The entire time he was telling me what parts were what.

Random picture time

What the heck happened to spring? It seemed like yesterday I was needing coats for the boys in the morning and long pants were still not too hot in the afternoon. Now it is shorts in the morning and redneck diaper kids in the afternoon. Evan and Harry had the first swim of the season. We bought a cheap blow up pool for our paved patio area. The nice giant pool that we put in the graveled area last summer lost it's space so that some of our potted plants could get better sunlight.


Here is a fun one of Evan having fun with a whoopee cushion. Note that he is getting both hands in on the action. His physical therapy is really starting to pay off.

Harry after he passed out during breakfast. You have to click on the picture to see it at it's best. Very funny!

Evan kissing Harry's baby doll. Very cute!!


This is Harry sitting in the rocking chair that my parents bought for me when I was that age. It is a very popular chair but had to be banished to the garage due to Harry's inability to actually sit in it. He prefers to stand in it and will stand in it any chance he gets.


I think that Little Tykes should invent a working vacuum for toddlers. My floor would be spotless right now. We picked this beauty up at a rummage sale on Saturday. It has been wildly popular and Evan literally begs to vacuum the kitchen. He spends hours in the kitchen vacuuming.

Poor Evan and Poor Harry

We made a quick and unexpected trip to the pediatrician's office this morning. Harry had some white gunk in his mouth that alarmed me by growing quite a bit over night. I thought it might be thrush, but apparently it is some harmless virus that will eventually disappear on it's own. I guess that is why our pediatrician gets the big bucks and Google is just a simple search engine.

While we were there Evan was freaking out thinking that he was here for another shot. I reassured him that he was not going to get a shot. The doctor reassured him that he was not going to get a shot. Then the doctor mentioned that the AAP had decided to recommend routine Hepatitis A vaccination and wondered if I would like to have my kids get it right now since he had the time. I said yes and Evan's fears were confirmed since he did get a shot.

I wish that I had at the very least only had Harry given the shot. I feel like I lied to Evan even though it was entirely unintentional. It could have waited, it is not like we are never in the pediatrician's office, although visits of late have become rarer. The shot also came soon after I did Evan's INR (which was finally with in range after three long weeks of being high) so he ended up with two pokes this morning.

I am going to have to go and disinfect the toys in the nursery closet. That is most likely where Harry for the mouth virus thingy from and even if it was not, it is smeared all over the toys now. It is a good thing that there is a lot of germaphobic people out there so that there are plenty of easy to use products out there for me to use.

Gingivitis (updated)

Evan started having foul breath and pain while eating this weekend. I scheduled an appointment with the dentist that is going to be doing his massive mouth overhaul in June since I was worried that he had an infected tooth or something. It turns out it was bad gingivitis (I had also noticed the gums bleeding but had attributed it to a high INR since his levels have been high for three weeks). He is going to have a strong antibacterial mouth wash painted in his mouth after brushing (fun times).

We are using a dental school for this major tooth undertaking (don't worry a real dentist will be doing his work) because I felt it would be best to have the option of Evan's cardiologist being around and this place is the only one that works at the hospital Evan goes to. The school deals with a lot of lower educated folk that need the cheaper services of a dental school. What bothers me though is that they just assumed that I had no idea about basic dental care.

Yes, I know that Evan has several bad cavities. Yes, I know it may on the surface look like I was being a horrible mother since his mouth ended up so bad, but really I am not. No, he does not eat a lot of candy. No, I do not give him juice all day. No, I never gave him a bottle to take to bed. Yes, I know a healthy diet means fruits and veggies. Flossing is important, I know. It is just really hard if he is not very willing. Yes I brush his teeth myself, if I let him do it he would only chew on the brush a bit.

Another creepy thing was the real dentist talking with the student dentist right in front of me and telling the student dentist to go over brushing with me. I wanted to raise my hand and let her know that I was listening and understanding what she was saying right in front of me. It was not like I was speaking a different language and could not understand her (not that it would excuse that). i guess I know how little kids feel sometimes. I am just happy that once this is all over we can go back to our really nice pediatric dentist that is near home.

Laura's comment reminded me of something that I forgot to write about. Real dentist took the time to explain to little ol' me why were were putting him under general anesthesia. She explained that it would be very traumatic to him if they had tried to simply restrain him while they were working on his teeth. I was shocked with that one. Does she really think that I would have preferred the cheaper option of tyeing down my son letting him scream an cry for several house while they worked on him. How sadistic did she think I was? If they had not offered the option of knocking him out I would have insisted on it plain and simple. Maybe if he was a lot older I would have told him to buck up and inhale laughing gas (my first few fillings I had to have it since I was so anxious about the process too) but a three year old just does not have that kind of understanding.

Evan the artist

One of the really fun things about this age is seeing old things become new again, like crayons and coloring books. When Evan was first introduced to the whole concept of coloring he would take a few swipes with his crayons and then be done with his masterpiece. In the last few months he has really started to get into coloring and will badger me almost every day to do some sort of coloring. Today Evan got to explore the fun of sidewalk chalk. Harry is forever banned from it since he ate several large bites out of it (yuck!).

Trees are fair game to color on

So are irrigation hoses

This was done very sneakily while mommy was briefly inside to change Harry's diaper

Mommy's foot is fun to color on

Evan also did actually color a little bit on the sidewalk

Coloring is fun!

Code Brown

Sometimes your kids end up putting you in situations where you would rather be anywhere but where you are right at that moment.

Evan had obviously been very naughty and been out of bed when the event happened. He should have been quietly napping in his bed but instead was looking at his fish tank. The trail led around the room finally ending in his bed which is where I spotted him when I tried to peek in on him so that I could try and figure out why he was not napping.

The stench nearly bowled me over and made me instantly sorry that I had even opened the door. I stood there for a few moments trying to decide if I should even attempt to remedy the situation or leave and gird my loins for another attempt at it later. I decided that things would only get worse if I waited and set about putting thing back in as much order as I possibly could at the time.

The last time he had a diaper that bad was when he was in the hospital after his stroke. He had been on a strong antibiotic due to a central line infection. His intestines had been thrown out of whack and his diapers had been vile. Generally I take care of stuff like that on my own, not bothering to call the nurse, but this time I knew I was in over my head. With a tiny bit of glee I pushed that lovely call button which would summon the nurse to the bedside.

A different nurse peeked her head in. I quickly apprised her of the situation and after she took one look at the situation she left the room to find out nurse. I think I saw a hit of a smile on her face when she left. I think she was very glad at that moment that Evan was not her patient. As it turned out Evan's nurse had been attending to another similar situation, so he went from the frying pan and into the fire but soon Evan was cleaned up and in fresh clothing with a freshly made up bed to boot.

Sometimes I can't help but wish that I could use that lovely call button that magically summons help. The world would be a much nicer place to live if everyone was able to get exactly the kind of help they needed right when they needed it.

Evan through the ages

I was looking through some of my old pictures and I though I would share some of Evan.

Son of a gun

Thanks for all the birthday wishes! I wish I could say that my birthday was loads of fun but cranky kids and Evan testing high for his INR kind of took all the fun out of the day.

Last week Evan's levels were low and this week they were sky high but I think I may have found the reason for it so hopefully they will level out soon. Apparently garlic is yet another food that interacts with coumadin. The week before Evan tested low we had a run of heavily garlicked foods but have backed off lately which is probably why he is so high now. I am going to have to be more careful in the future with making sure that there is an even amount of garlic in the food we eat.

I wish that this was more widely known. My sister is the one that clued me in on this one. She has a new job working with older cancer patients who are often on blood thinners. That is how she learned about it and then passed it on to me. In all the things that I have read it has never even been mentioned before. I am almost afraid to feed him anymore as I can never seem to be sure which foods will mess with his delicate balance. This is almost as bad as having a diabetic in the house.

The sickies strike again

Last night I dreamed that Evan threw up in his bed. Sadly it was not a dream but reality. I must have heard him puking and incorporated it into my dream. I did a wash all the bedding day yesterday and now I am having to do it all over again with Evan's formerly freshly laundered sheets and blankets.

He spent the morning watching Thomas and ended up throwing up his lunch. He is feverish too but in an odd twist of fate I am unable to locate any of our many thermometers. We have two digital (one used exclusively for rectal temps), an ear one that someone gave us and a tympanic forehead one and yet they are all MIA. I am not too worried as he does not seem excessively lethargic or anything, however we will be missing church tomorrow. I am keeping my fingers crossed that Harry will not get it too but chances of that are slim especially since the little monkey found a cast off sippy cup that Evan had been sipping out of all morning and promptly drank out of it before I could stop him.

What now?

We are now over six months past Evan's last heart surgery. I find myself at loose ends. All of Evan's life there has been a surgery hanging over our heads, looming in the not so distant future. Now? There is nothing planned, nothing to plan for, we just wait. We wait to see if things change if, some how, despite expectations things get bad.

The number of doctor's visits are rapidly decreasing. This was Evan's last winter on Synagis. Next winter we will not have to visit the pediatrician monthly, in fact we may be able to go the entire year between well visits with out seeing him (stranger things have happened). Evan is only seeing his cardiologist as often as he is because he flat out refuses to let me use the equipment to monitor his pacemaker over the phone, so they have to do it in the office.

All of these wonderful things mean that suddenly Evan can start just being a kid now. The intrusions into his life are shrinking leaving only his physical therapy which to him is like having an adult come over to just play with him. I think I am going to have to come up with a new hobby or something.

Things that break your heart a little

Recently Evan has discovered that band-aids are fun and not merely functional. I bought some fun character band-aids in what I thought was a lame attempt to make his twice a month toe poke for his INR test a little more fun. He seemed to think the band-aids were ok, but nothing special the first time I used them.

This afternoon we were fish watching in his room. Our home INR test kit was sitting on top of his dresser and he saw it. He got excited and started saying something that I could not understand at first. The word was band-aid. He was willing to have me test him so that he could have a beloved character band-aid. Instead I just gave him one to put on his arm.

No whining, just some pictures

Here is Evan in his latest fashion accessory. They are his beloved "asses" He enjoys wearing them so much (probably because both mommy and daddy wear them) that he will get most upset when I make him take them off. Note that they are a super cool silver instead of the babyish other colors that he had to choose from. Harry refused to keep them on, so he was not allowed to have a pair.



In keeping with the whole bad boy theme, here is tattoo artist Evan working his magic on his father. Evan loves to color on himself and other people. I have not had the heart to break him of this since we use washable markers that are truly washable. Plus it is sometimes used in his therapy to get him to interact with his left hand. We went out to eat on Friday and he was given some crayons. Once he got tired of coloring on the place mat he started trying to color on me despite my assurances that crayons did not work on skin.


coloring kids sunglasses

Birthday pictures

Evan's Thomas birthday cake. He was very pleased with it.

Ooo candles!

Mommy and Daddy got him what he loves best: Trains!

I think that Harry got more cake on him than in him. This was not even as messy as he was when I finally took him out of his high chair. The frosting kept getting smeared around.

Happy Birthday Evan Stinkerpants!

I can't believe it but today is the third anniversary of your birth. A lot has happened this year and you have come so far. You are pink for the first time in your life. Your walking has improved greatly, you still have a bit of a hitch to your walk but it is quickly disappearing. You rediscovered your left arm and will now make an attempt to use it when the opportunity presents it's self. You are three feet tall now and can do more of the things that come from being taller such as turning on and off lights using the light switches.

You adore Thomas the Train and all his friends. Your favorite engine is Diesel. Story time is one of your favorite things to do with mommy and you will bring her books for as long as she will read them to you. Your vocabulary has really taken off and you can express yourself much more clearly now.

I think you would live outside if you could. Almost from the first moment you wake up to the time you got to bed you will bother mom any time you get bored of your many toys asking her to put your shoes on so you can go outside.

You are really becoming quite the little boy now, you are no longer a baby. I can't wait to see what next year brings.

These boots are made for splashing

Evan finally got to try out his new rain boots today. We had been enjoying a bit of a dry spell that is now over. We are facing rain all weekend. Harry was a bit miffed that I had to leave him inside with daddy but there was no way I was going to chance him ruining his Robeeze shoes, those suckers are expensive! Enjoy the pictures.

evanPod

Way back when the nanos were first out on the market I joked with my sister E that she should get Evan a nano. It was the perfect size for him and after all he deserved all the cool new toys. She refused but did say that once he would tolerate headphones that she would then get him his own nano. Well Auntie E where is his iPod?

Quite the morning

This morning Evan had a bloody nose. I was trying to get lunch done (so I guess is was more afternoonish) and Evan was having a fit that it was not going fast enough. I send him off to sit down so that he could calm down when the next thing I know he has blood all over the front of his shirt and big fat drops more coming out of his nose.

It is not easy to stop a bloody nose in a very reluctant toddler who would have been happy to just sit there and bleed. He did not want me to put any sort of tissue up there and was not wanting me to pinch his nose shut. I was glad that my neighbor was not home because she might have thought I was murdering someone the noise was so loud. I had to restrain his entire body and pinch the nostrils shut, no easy feat now that he is getting bigger and stronger. Once he exhausted himself I was able to pack some toilet paper in his nose and ace bandage his good arm to his side. He then calmly watched the computer screen saver while I finished lunch. I wanted to make good and sure that a clot had formed since I did not fancy a trip to the Emergency Room.

I think this whole event was a combination of bad genetics and blood thinners. I checked Evan's INR, which was fine, so it was caused by the dry winter air. My husband and I were plagued by bloody noses as kids. I have grown out of it mostly but sometimes my husband will still randomly start bleeding. I emailed Evan's cardiologist and I got some great tips to hopefully prevent the next event.

Excuse me, while I run off to mop the blood off of my floor. CSI would have a field day in my house.

Transitioning your child off of tube feeding

I have received several Google hits on this subject. I thought that I would share the things that worked for Evan in the hopes that someone may find it useful. This is what worked for us, each child is an individual and what worked for us may not work for someone else. It is important that the child's GI doctor is consulted when you make drastic changes in your child's feeding schedule and diet.

Evan was not a hard case. His eating issues stemmed from several different sources. His number one issue was his heart defect. It is hard to develop much of an appetite when your heart is working hard to make sure that everything is being oxygenated properly. He also had to deal with reflux when he was an infant (he spit up a lot and very frequently). Small frequent meals were all he could manage during the day. He would not show any sings of hunger so I had to keep him on a schedule or he would go hours with out eating. He made up the calories he was not taking in during the day with a tube feeding while he was sleeping at night. All this led to him having very little stomach capacity. If he attempted to eat a lot of something that he liked his stomach could not handle the large amounts and would end up throwing up. We had to do something to stretch his stomach before we could get him off of tube feeds.

Evan's doctor and I decided to switch from feeding him a small amount per hour over a long period of time at night to giving him bolus feeds (a larger amount over a shorter period of time) during the day time. We would gradually speed up the bolus feed and increase how much we gave at one time. A lot of throwing up ensued when mommy or daddy pushed him too much during a bolus feed but eventually he was able to take eight ounces of Pedisure over a half hour. The doctor had deemed this our ultimate goal since kids his age were able to take in that much on a regular basis.

Once we knew that his stomach had the capacity we started dropping how much Pedisure he was getting. As we did so his weight was carefully watched so that we could see if he was compensating for the calories that he was not getting from his tube. Every time he was weighed I would hold my breath hoping that he was still gaining. Every time he was which made me very happy.

You can see that Evan's transition off of the tube was rather smooth. We did not have any oral aversions or strong texture issues to deal with. I think that my insistence that he eat orally during the day helped that since, even with tube fed kids, oral stimulation is still very important. I also think that having him get the feel of real food in his mouth was important. A dietitian that I saw to get ideas on how to boost Evan's calorie intake wanted me to feed him more pedisure. I did not want to have Evan on only pedisure since as good as a formula can be it is still artificial. I felt the he needed a variety of real food in his diet to keep him healthy and happy.

I hope that this is helpful to someone some day. I think that with out reading about the things other parents were trying I would have gone insane with worry and frustration especially since early on we ended up with a GI doctor that was not very interested in helping us transition Evan off of the tube. Once we got a more caring doctor that was willing to work with me and listen to me things really started taking off. Evan is now a pretty normal picky toddler that hates to eat his vegetables.

Evan enjoying a tube feed while watching a video. It was the only way we could keep him still in his chair long enough to give him his bolus feed.

A day of rememberance

It was a seemingly normal day. We went out shopping the day after Thanksgiving sales leaving Evan behind with his grandparents. I was reluctant to leave him behind but I knew he would have fun with his grandma. At the mall while we were having lunch I saw a baby about Evan's age and I missed him even more.

On the way to to town my husband and I discussed where we would have buried Evan had something gone drastically wrong with his recent surgery. We had not discussed it before then because we had not wanted to face the thought that our only child could die.

Later that night as I was trying to help my mother-in-law cook a late dinner Evan started crying. He would not settle for my husband so I heated a bottle and tried to calm him down myself. He was writhing and sobbing and nothing could console him. I gave up and put him into bed for the night thinking that he was just over stimulated by all the excitement of the day. I was wrong he was not overstimulated, he was having his stroke.

This time of year is an exciting time but it is also a bittersweet time as well. My memories are made all that much stronger by being in the very place that Evan had his stroke. Last year's anniversary was a breeze for me since I was dealing with Harry and his issues. This year we are doing so many of the same things we did last year that it is hard to not let it prey on my mind.

We were so lucky that day. If that blood clot had gone in different directions things could have ended up so much worse. Evan could have had his forebrain destroyed. He would have had his ability to make rational decisions destroyed. His personality and memory could have been torn to shreds. The clot could have ended up in the back of his brain. All of the automatic things that you never think about could have suddenly been turned off. Death would have resulted.

I am so thankful that things turned out the way they did. Evan has made so much progress since that day. He is a very bright and happy little boy. He is an amazing and loving big brother. I am thankful for every (well almost every) day that we get to have him with us.