Super dee duper

Yesterday I got to do something that I have not done in a long while. I went to a knitting group! Thanks to the internets I was able to scope out a local knitting group before we even moved. It was a fun event and I plan on going back. Non knitters might not get it but there is just something about getting together in a group and knitting. You get to ooh and ahh over what other people are knitting. You get to see (and pet) different yarns (they were very impressed with your handspun Tama). It can also be very entertaining just sitting back and listening to other people chat away. You enjoy the company of like minded people.

When I got home my husband asked me what we had done. I was rather taken aback by the question, after all it seemed pretty obvious to me that when one went to a knitting group one would expect to knit.

Speaking of groups of like minded people gathering... we now have the basement pretty whipped into shape. It seems such a shame to me that now that we own a house with plenty of room I don't have any of my friends from California to invite over. When I was there I could never have play group at my home, there just was not enough room for herds of kids to run around in. I always felt bad that I was never able to host. Maybe I can convince them to all make a trip to my house.... hmm....

Bragging on my boy

Evan is such a sponge, it is amazing to watch his thirst for knowledge. He has moved beyond the more self centered physical pursuits of a baby and toddler (example: learning to walk) and is now extremely fascinated by the world around him. He needs to know the names of everything. Each truck or car that drives by must have a specific type. Numbers and letters surround him and he must point them out to me to share his joy in them. The deep dark things of the world fascinate him. We have to stop and look down drains and grates. He loves tunnels and caves.

With very little effort on my part Evan has learned his shapes, many of the colors, to recognize the numbers 0-9 (we are working on higher numbers now), he can recognize the entire alphabet, he knows all the names of the planets along with other celestial bodies, and on and on. I have lost count of all the different distinctions in moving vehicles that he can recognize and point out. He is starting to get interested in anatomy. We checked out a dinosaur book and he is fascinated by all the different kinds (I sense dino mania in my future). I am really beginning to think that my mother in law is right and that he will end up perusing a career in science of some sort.

I think the funnest part of all this is that I am allowing him to decide what he is interested in and what he wants to learn. I am not one of those parents that played music to my unborn child so that he would add a few extra IQ points to his score. I think that maybe I am just happy that he is not affected mentally from his low oxygen saturations early in life and the possible brain damage that can happen from being put on the bypass machine. I want him to want to learn and I hope to teach him to be able to think on his own so that even if I do not know something he can figure it out for himself. I think that this is one of the most exciting parts of being a parent, being able to shape and teach such an eager student.

Can you believe it?

It has been a whole year since I wrote this. I can't believe how fast the year has gone by, it is so amazing how much Evan has grown. When we were at my inlaw's house all the boy cousins would take baths together. Evan was actually chunkier looking than his cousin. He has gone from below the 5th percentile in weight to average. It was a hard road but I am so glad that the journey is done.

BeforeAfter

Annoyances

One of my least favorite things to do is having to deal with the ordering of medical supplies. The companies will give you too much of one thing and barely give you enough of another. When Evan had his feeding tube it was the bags for his feed pump that were the choke point. We got 30 and that was it. There were always one or two bags in the box that were bad for one reason or another which prevented us from building up any kind of minimal surplus.

At least with the feeding supplies we did not have to wait for authorization each and every time we needed a refill. Evan's test strips for his INR testing machine are that way. When we first got the machine we got a big box of 48 strips plus a plethora of lancets (we have still not run out of our initial supply of those). As the number of strips dwindled I started looking for a place to get refills. Once I found a place we had to jump through all the new patient hoops. Once all that was done I found out that I could not order a nice big box of 48 strips, those were only for doctor's offices. I had to get Evan's in boxes of 12 and I was only given one box at a time.

I thought I was doing good this last time by starting the whole reorder process when we were halfway through the box. We test every other week, so ideally the box of 12 would have lasted six months. Evan had a string of highs and lows that meant testing a lot more frequently and we were down to one lone test strip. I was about to call the company to chew them out for taking so long (although it was most likely my insurance's fault) when I finally got the call that they are on the way. This time I am getting a bounty of two glorious boxes of 12 test strips. I am giddy with joy right now.

Tags: INR, test strips, insurance, frustrations

Traintastic

Evan had a train filled day today. First off we visited a scale train amusement park. The train ride was fun but once that was done there really was not too much for the kids to do. They were too short for most of the rides there and the petting zoo was only accessible by train. Harry did not like the train tunnels, he started crying because the kids behind us started yelling and screaming every time we went through one.



When we got home there was a lovely package waiting for us. Vicky sent us some Thomas trains that her sons had outgrown. Evan had an absolute blast playing with them all afternoon while Harry was napping. They are a tiny bit old for him but with some help from mommy and daddy he is going to have a lot of fun. He thinks it is the funniest thing when we run two trains on the track and they crash. Thank you a ton Vicky!!! Blog friends are some of the nicest people.

Tags: train, Thomas the Train, toys, fun

We are back!

This was a snap compared to everything else that Evan has gone through. The new hospital has a play room for the kids so the waiting for the procedure to start was not too irksome. A Child Life specialist even came by and did some medical play with Evan and another kid that was in for a procedure too. Evan still fought the gas mask to put him under and it was hard keeping him on my lap while he went under.

It was a quick procedure only about three hours. He came out with two crowns (one silver and one tooth colored) and two fillings. His cardiologist came by to see how he was doing which was very nice of her since officially he was not really her patient. Evan charmed all the nurses as usual and did not throw up the juice he was allowed to drink. We were home around 1:30, in time for me to get a nice nap after wolfing down lunch at home.

Here is a picture of Evan's new smile. Just kidding!



Evan coloring in his Thomas coloring book. Thomas was the second word out of his mouth upon waking up. the first was cars. I guess I know where I stand is his life right now.

Tags: hospital, dentist, child

What a difference six months make

Today Evan had his big semiannual cardiology work up. The hospital where he gets his heart stuff done is a bit odd in that it is actually three different hospitals with the same name. They recently moved all the kid stuff (birthing and the NICU which were already in the one building and pediatric sub specialties plus the PICU and pediatric hospital rooms which were not) into one building. Now it is like a children's hospital with out being an official children's hospital. This was our first time at the new place and it was a bit strange at first but it was nice being in a shiny new examining room.

The biggest thing I noticed was that while driving there I did not have to go up the terror inducing hills that are very common in San Francisco. These are hills that you do not want to be driving a standard transmission on. These are hills that you break into a cold sweat if you see a person ahead of you on the hill because that means when they stop at the top of the hill for the four way stop you will be stuck behind them only partially up the hill, praying that you do not slide further down. These are hills that have sidewalk stairs for pedestrians. These are hills that make you thank Heavenly Father every time you successfully make it up them.

The appointment went so much better than I had expected. Previous to this Evan has been quite squirmy and very angry when he had to have his pace maker interrogated. All it involved was holding a large computer mouse like device over the spot where his pacemaker was. It did not even have to touch the skin, but having it hover near him just pissed him off worse than me holding him down and putting it against his shirt.

This time around he quietly accepted the pacemaker thing on his stomach with out a peep. You could have knocked me over with a feather. I was all tensed up for a fight to the finish with him. He was entranced with the screen of the computer and thought it was cool that he could see the squiggly lines of his heart beat. I told him that it was his heart beating and he kept asking to see more heart.

The even bigger surprise was to come. He had to have an echocardiogram and for the most part he stayed absolutely still. Again, in the past it had been a bit of a struggle to get him to be still and not cranky about the whole procedure. I had to bribe him with candy so they could get decent pictures with out having to resort to sedating him. I think I could have done this one with out the candy at all.

Everything is looking good with his heart. He charmed the heck out of everyone as usual, he loves his cardiologist since she has never actually given him a shot or done anything at all painful to him. Even the pacemaker guy was falling for him. We go back in another six months.

Caution genius at work

I have decided that I am going to groom Evan to be a computer genius. I have to get an early start on this because everyone knows that if you don't get them started before they are three you are just too late. A lady in my ward gave us two toddler themed computer games and I thought it would be fun to see how Evan liked them. He had a blast even though I am not sure he even really knew what he was doing. We have an optical mouse (no more dirty mouse balls tee hee!) and he had fun with that too. He would randomly flip the mouse over and look at the light. Next stop a computer virus.

A mommy brag

I dread the thought that putting this out there for everyone to read will ruin things but I just have to brag. I have the best toddler ever. Evan is so great, he actually listens to me (for the most part) when I tell him to do things. He can sit, lay down, throw things away, put his clothing in the dirty clothing hamper, and put his toys away. He had a wonderful personality. Temper tantrums are rare and generally only happen when he is tired or needs to eat. In short he is a joy to be around.

I think that this is to make up for how rough his infantcy was. He was and always has been a good kid but everything else was hard. I was a new parent with an infant that needed special care. It was not easy but little by little things got easier and now they are amazing. Everyone that interacts with him agrees with me.

What brought this brag on was that I have been letting him out of the shopping cart to roam around stores during some of our many shopping trips. Harry has gotten so good with his sitting and is so heavy that I like to let him sit in the cart now. That leaves poor Evan to either sit in the basket or walk. Hearing the horror stories of kids running around the stores and breaking things made me hesitate before I let him loose. I was also hesitant because I was not sure that he would have the stamina to make it through an entire trip.

Evan as usual surprised me. He likes to look and tries to tough some of the items but will listen to me when I tell him to stop. He does not stray too far from me. If things get too out of hand with the touching I just hold his good hand and he can't touch anything else. I just hope that this good behavior keeps happening and does not disappear by the time he becomes a teenager.

Some fun photos

We have had a pretty busy weekend. Saturday was the temple, which took all day. Evan ended up tripping while we were gone and getting a nice shiner. I told people at church that asked about it today that he got into a fight.

Speaking of church, we actually managed to make it through all three hours today. This has been a hard thing to do this year because our time changed from going at 9am to 12:30 in the afternoon. This happens to be right at Evan's nap time. He is pretty good for the first two hours which he is in nursery for. There he gets to run around and play with toys. During Sacrament meeting he is confined to a single pew and he is excessively tired from all the running around. Usually a melt down ensues shortly into the meeting. Today we managed to jolly him along with fruit snacks and dried cherries.

After we got home we had a little fun in our kiddy pool. Well we had fun in it until I discovered some mosquito larva in the pool. I hastily drained it and will have to come up with a way to cover it. I do not wish to have my back yard turn into a breeding ground for blood sucking pests. Pool time turned into marker time. I think that Evan wants to become a tattoo artist when he gets older. He even decorated Mommy's legs. Luckily Mommy is smart and has the new washable Crayola markers so the decorations washed off in the tub.

A boy and his cars

Evan is obsessed with cars, he has been this way since he was a small baby. He would flip all toys with wheels over and turn the wheels endlessly. Then when he was about nine months old he got his first small toy car and it has been love ever since. When we go walking he has to stop and watch each and every car pass by. Even if it is the biggest junker he will point and say "Wow!" He will often clutch a car in his hand to take with him in the car on our many errands. All he needs to be entertained is his cars.

I wonder if this car obsession will continue into adulthood. Will he be a teenager that loves to tinker with the old beater that he saved up for? Will he be an adult that loves and cherishes a sweet set of fast wheels? Will he become a car mechanic? I don't know but it sure is going to be interesting to find out.

Evan driving his cars with his daddy.

Evan's favorite race track. He has a strange need to drive his cars on elevated surfaces.

This is Evan playing with his car suit case. We keep the bulk of his collection in there and occasionally will pull it out to keep him entertained for a really long time.

It is check up time

Harry had his six month check up today. He weighs 18 pounds and is 26.5 inches long. He is average now, instead of the massive giant infant that he was a birth. I kind of expected that since we are average sized parents. I am still puzzled by the large birthweights of my children since there is no family connection for that.

Evan of course came along and totally freaked out when we had to go into the room where they weigh the kids. He then had another freak out in the examination room. He kept thinking that we were there for him to get shots. Eventually he figured out that Harry was the one getting the shots and then he relaxed a bit. As we were leaving I had to stop at the front desk to make another appointment for Harry and Evan wandered into the weight room. He then proceeded to throw a temper tantrum as I drug him out of the room that not a half hour ago made him freak out. Toddlers!!

While talking with the peditrician he asked me if I was over the whole overwhelming what the heck am I doing feeling that comes with being a parent. I had to laugh and tell him that even now that I am a bit more seasoned that I still have many of those moments and I am sure that I will have many more to come. Kids have a way of making you realize how much you don't know.

It's a good thing

Since the introduction of the fork the other day I have noticed that Evan has been a lot more interested in trying the things that we have for dinner. Generally during the day he eats kid friendly fare like chicken nuggets but at dinner time we insist that he trys what we are eating. He has to take one bite of every thing and then if he won't eat any more then too bad. Generally he takes the bite and that is that. No trying of food on his own. Lately though he has been eating a ton of dinner. He may not use the fork for the whole meal but he has been eating a good amount. Yeah Evan!

Just when you think that you know what is going on

Just when I thought that all we had to worry about surgery wise with Evan was the Fontan I find out that Evan's cardiologist is still considering a surgery. Supposedly the cath that he had in April was supposed to take this off of the table but it seems like she is still worried that the remaining flap of his ventricular wall will cause troubles in the future. I get the feeling that Evan's surgeon does not agree with her. We do have a compromise of sorts though. When Evan goes in for the Fontan he will go in and see how much of the wall is left. If there is a lot then he will take care of that and then we will schedule the Fontan for later. The reason for separating the surgeries is that the Fontan is a big operation for the body to get used to and bad things happen when more than the Fontan is attempted.

This whole thing is a bit frustrating because I feel like I am being yanked around. There is a certain amount of emotional preparation that you as a parent have to go through to get ready for a surgery. It is hard to prepare and then not have to go through the surgery and then have the surgery back out there for you to prepare for. It is going to be even harder to prepare for a surgery and then think that possibly you may be done only to be told that you still have to endure one more.

Another freaky thing is that we will not have to see the Cardiologist until Evan's pre-op check up. That means that a surgery date will be set soon. That means that the surgery is not some nebulous event that is out there is the distant future. It is closer and more defined as an event. It is coalescing into a cold hard event.

Who would have thunk it?

Evan made an eating break through today. We had been allowing him to use a spoon with his meals for the last few weeks because he had shown actual interest in using it as a utensil rather than a fun toy. He had been doing ok with eating with a spoon, not super great and very messy. A couple of nights ago when we had spaghetti for dinner my husband mentioned that we should get him a fork to eat with.

I went to Target, got him an Elmo fork and spoon set (not my first choice but it was either that or Dora the Explorer) and this morning we let him try out the fork with a breakfast of french toast. He used it like a pro!!! I was very surprised that he knew how to use it so well. How the heck did he get to be such a big boy?? Where did my baby Evan disappear to? Who is this strange toddler Evan?

Evan's story

We were a young couple eagerly expecting our first child. At the time, every thing seemed to be falling into place with our lives. My husband was completing specialized training for the military, we were pregnant and we would be assigned to an area when he graduated where we could start thinking about buying a home. There was no hint of what was around the corner.

The first surprise was that Evan was in a breech position and estimated to weigh over 11 pounds. My obstetrician discussed this with us and we decided that trying to turn the baby would be fruitless because of his size. A cesarean section was scheduled. At that point I was just glad that the end was in sight. I was so tired of barely being able to move and eager to meet my baby.

Everything with the birth went well. Evan weighed a whopping 10 pounds 6 ounces and passed his Apagar scores with flying colors. I was thrilled to be holding my perfect baby and was eager to start nursing him. The nurse was helping me latch him on my breast for the first time when she noticed that he turned a bit dusky for a brief period of time. Assuring me that he looked fine and was only doing this just in case she went and got the pulse oximeter to test how well oxygenated his blood was.

The numbers were lower than expected so she took my precious baby from my arms to run more tests on him and put him on supplemental oxygen. I was so tired and still drugged up that I drifted in and out of sleep praying the whole time that nothing would be wrong with my baby. I kept hearing him cry while they poked and prodded him.

The pediatrician on call decided that he needed to be moved from the small community hospital that he was born at to a larger one with a NICU. I asked to go along with him but since I could still not feel my feet, because of the spinal block, I was told that I would have to stay where I was for now. Devastated I was allowed to see him one more time through the incubator that the EMS people had brought to transport him to the other hospital.

The doctors from the other hospital assured us that he merely had pulmonary hypertension which caused his pulmonary arteries to shrink a bit with the stress of adjusting to life outside the womb. All he would need was extra oxygen and time.

Five days after his birth I went to visit Evan with my mother-in-law. He has been placed on bipap to help open up his lungs and he seemed to be doing better. An echocardiogram was scheduled for that day because one of the doctors thought he heard a murmur in Evan's heart. I decided to stay and watch the test.

It took awhile to get all the equipment set up as it was going to be a video consult with a pediatric cardiologist in a city about two hours away. I remember sitting there as the test began confident that this was a mere formality. Then the technician that was performing the test started freaking out. She could not find all the normal things that she was looking for. I could not at the time understand what she was looking for but I picked up right away on her worry. I started praying again that my precious baby would be fine.

He was not fine. They discovered a very complex heart defect and would have to transfer him to another hospital with the expert pediatric cardiology team that he would need to address his complex health problem. The doctors could not even apprise me of the extent of his defect since they were not experts in the heart and there was static on the line so the cardiologist did not get a complete picture either.

My world was completely turned upside down that hour. I went from having a baby that needed a little extra oxygen to one that was gravely ill. Before we would be able to take our firstborn home we would have to endure several surgeries including the implantation of a pacemaker, six weeks of hospital time, eating difficulties and the destruction of all our hopes and dreams.

Getting him home was only part of the battle. He developed bad reflux while in the hospital so nutrition to get him to grow before he could get to the next stage of his operation was a huge challenge. I also had to come to terms with what it meant to be the parent of a child with a heart defect. I had to endure the pitying look in people's eyes when I told them about Evan's diagnosis.
Surprisingly he did not turn out to be a sickly infant, too weak to even lift his head. He hit all of the important milestones at all the right times. Slowly life achieved a new normal.

About that time it was decided that he was ready for his next surgery. By this time I had done more research and connected with other parents through the internet. I felt more in control with the situation. I had been there before.
Evan did well with his surgery and was out of the hospital in a week. I was thrilled and happy that we would be able to go and spend Thanksgiving with family. I thought we were home free as he would probably not be needing his third and final surgery until he was three or four years of age. I had so much to be thankful for.

The evening of the day after Thanksgiving, Evan started crying
inconsolably. I was frustrated with him for not responding to my attempts so calm him and eventually I ended up putting him down for the night thinking that he was just over tired from all the excitement of the day. He woke up early that morning and when I went to get him I could tell immediately that something was wrong. One side of his body was limp and useless.

A CT scan would show that the middle third of his right hemisphere, the part of the brain devoted to voluntary muscle control was affected. Again our world was turned upside down. This time we were very lucky as if that blood clot had happened in any other part of the brain his entire personality and ability to learn could have been affected. He could have easily died that night.

Again life has returned to a new sort of normal. Evan finally started walking a year after the stroke. There is a trace of a limp in his walk and he refuses to use his left hand instead preferring to make other adaptations. He is on blood thinners to prevent another stroke so when he trips and falls he bruises easier than most kids. The casual observer would not realize that there is anything amiss with him.

While life is "normal" right now I know that it can change in a blink of an eye. Evan is facing another major surgery this fall so of course I am hopeful that maybe this surgery will go smoothly with no complications. We shall see what life holds in store for our special little man. All I know is that I treasure moment that we are blessed to have him here with us.

October 10, 2006

I am adding more to Evan's story since he has been through the third of the three stage surgery. The surgery went very well with no major complications. He was only in the hospital for a week. During that week right before he went home he was placed on a 24 hour Holter monitor. That test showed that Evan's pacemaker was not working correctly due to inflammation from his surgery. Evan has an underlying rhythm, so it was not like he was in immediate danger but it was decided to admit him after several pacemaker interrogations showed that there was minimal improvement in how the electrodes were working. After being given some steroids the electrodes started working better but still not perfect. Right now we are at the stage where he will have to have his pacemaker replaced in the very near future.

Another update:

Evan had his pacemaker replaced with no problems at all. Things have been very quiet and great for us.

My Son The Pusher

I discovered an ugly side to Evan today. At play group while I was passing out graham crackers to everyone Evan reached out and pushed the other little girl down. It was so causal and I think that he thought it was funny that she fell so he pushes her again. I just about died right there.

It was one of those nightmare situations and I even did something that I will try not to ever do again. I made an empty threat and told him that we would have to go home if he did that again. Of course later on he did it again so I had to move him away from the other girl and I told him in my sternest voice that we do not push others. I think he got it because he acted later on like he was going to push again but I saw it and I just said his name and he stopped.

This whole socializing kids into decent human beings is getting to be much harder than I had imagined. I guess Evan being such an obedient child made me think that I was on easy street.

The Power of Choice

Lately I have been having a hard time getting Evan dressed. He would throw a huge fit every time I had to change a diaper or any of his clothing. Today I let him pick between two shirts, two pairs of pants, and two pairs of socks. Putting on his choices... were a breeze. Not one bit of complaining.

Who does he look like more?

It is fun to have people tell me that Evan is the spitting image of one parent or the other. I have a hard time deciding who he looks like more since I see so many traits from each of us in him. You decide, who is he like more?

Hubbie age 2
Evan age 2
Me Age 2
Evan Age 1
Hubbie Age 1
Me Age 1

Happy birthday Evan Stinkerpants!

Today is your second birthday. Time sure does fly by fast! This year has been a great year. You learned how to sit up and then how to walk. You got your first big boy buzz cut. You became a big brother. You have decided that eating is fun and have gone from 18 pounds to 27 pounds which is a big gain for a toddler. You said your first word: fish. You got your first pet and learned that opening presents is big fun.

Your third year is going to be tougher and filled with more challenges but mommy and daddy will be there every step of the way. We love you so much!