White Christmas

KP still isn't using his hand much. I think he is waiting until it looks less gruesome. We have had to put a sock over it a few times because it was upsetting him so much to look at it. :(

But on to more fun updates:

On Christmas Eve we went to Mike & Mary's house for Paroski Christmas. And would you believe it? It was snowing....on Christmas EVE!! :)











Santa came while we were there. :)


Uncle Jam Jam and Josiah




Mamaw, Papaw and Uncle Josh

And while we were there, the snow just kept falling.....



As soon as we got home, we put KP in bed. Santa came while we were sleeping, so KP woke up to a wonderful Christmas present...










Just waiting for the kiddo to wake up...







Then it was time to go to Uncle Chris and Aunt Edith's house...









The day after Christmas, we went to see G-Daddy and G-Momma for another Christmas. :)




This is KP not so patiently waiting for me to liberate his new dump truck.


Now he is waiting for Daddy to hurry up and take his picture so he can play with his newly liberated dump truck.


He also got a pretty cool train set.


And basically a new motor pool.



Whew. We are worn out!

Merry Christmas.
xoxo
Margot

Thanksgiving 2009, Josiah, Bye Bye Astro Boy Arm

We have had busy times since Astro Boy arm came into the picture. :) KP has been loving every minute of it. No tantrums just because of the arm (plenty, just because he is 2). He will ask for just as much help as he needs, which means we are often just the other hand.

The other day, he wanted to carry his water into the living room from the kitchen, but he had a big daddy glass, so daddy held one side, while KP held the other, and they wandered into the living room like that. :)

I went out of town for Thanksgiving to celebrate my mom's 60th birthday, so Dylan and KP were on their own for a while. :) They had a lot of fun, and they even got to see Uncle Wowie at Aunt Cindy's house. :)

I got back just in time for us to celebrate Cousin Josiah's 3rd birthday! :)

All ready to go. This whole cast period is marked by very large fashion choices. It is tough to get that thing through any armhole!


This is the best picture we have. I will just say that I think that both the boys had a great time.

Then, on December 14, we went to say bye bye to Astro Boy arm. This was a sad day for KP. I'm going to post some pictures below of them taking his cast off. Some of them are quite cute, because he takes it all in stride. However, there is at least one picture of the pin coming out of his thumb that is not so cute. So, keep scrolling at your own risk.


We were lucky that they happened to have some soft cast material in the OR the day of his surgery. No saws to get this cast off, just water and scissors.








This pin is actually quite huge.


KP was okay until he saw how gross his hand looked. Then he started crying. I imagine he was just expecting his regular old hand inside all that mess.


This is the pin that was in his little thumb. That is daddy's pinky finger. That is pretty darn big to be in a 2 year old's thumb. I'm just saying.


And then we went home and played with TiVo (because that is a favorite for KP). His hand is pretty limp and flat, and his arm keeps floating up because it isn't carrying the weight of the cast anymore. We are a little worried, but we will just have to wait and see how this turns out.

xoxo
Margot

Astro Boy Arm

So the surgery went great. KP was a little groggy waking up, like he usually is. But, after he really woke up, he looked at his cast and said "Mommy. I have an Astro Boy Arm!". And that seemed to settle the whole thing.


Don't be fooled by that sling. That lasted about 25 seconds after he woke up, never to be seen again.




See what I mean. :)

Then he ate 5 bags of goldfish while we were waiting for the doctor in day surgery, so we got to go home that very same night! I was impressed.


Sorry for the graininess. This was an incognito cell phone pic. The cute story about this, though, is that since they had his IV in his left hand all bundled up on a no-no board, he only had two fingers available. So he would have me hand them to him one by one so he could eat them with his two fingers. This is when he still thought he could manage by himself. Haha.


So, of course, you know daddy....

He will have to keep the cast on for 6 weeks. We will see how this goes. Right before this surgery, KP started opening doors with both hands, and his independence has grown, so it will be interesting to see how he manages with one hand in a cast.

xoxo
Margot

101st post :)

Wow.  The last post was our 100th post, and I missed it.  I really was planning on doing something monumental with that post.  Well, I guess I'll have to wait until our 125th.  It will give me some incentive to keep posting.  At this rate, KP might be 5, though. :)

They have been talking about Thanksgiving at school this week, and KP's teacher asked everyone what they were thankful for -- KP said "cars".  Everyone (including his teacher) was shocked that he didn't say "choo choo trains".  So, here is how our conversation went the next morning:
    
     Mom: Did you talk about Thanksgiving in school yesterday?
     KP: hai
     Mom: What are you thankful for?
     KP: ummm.....trains
     Mom: Anything else?
     KP: ummm....no.
     Mom: So, you're just thankful for trains?
     KP: hai

So I guess that settles that. :)

We spent the week oversanitizing KP's hands, and doing everything we could think of to keep him healthy, and it appears to have worked.  So, it looks like we are on for surgery this week.  Here's the breakdown in case I don't get to post again.

Tomorrow (Monday) we have our preop appointment with KP's hand doctor.  I'm pretty sure this is just her chance to see if he has grown any, and to make sure that he doesn't cough in her office like last time. We will also be doing our check-in and registration with the hospital since we will be arriving so early on Tuesday morning -- here's a side note -- in all of the surgeries that we have ever done at MCD (and you know there have been plenty), I have never been given the option of doing that part the night before.  We have had very early call times, and I don't remember ever being given the option of checking in the day before.  I could be wrong, and my memory could be faulty, but I just don't remember it.  It's a nice change, anyway.

Tuesday (Happy Birthday, Candy) - we are arriving at the hospital at 5:30am for prep.  What this really means is that we will show up so that they know we still want surgery, and we will spend 2 hours in the play room until the OR is ready for us.

Surgery is scheduled to begin at 7:30.  It usually takes him a little longer to get down, just because I think it takes a little more, he fights it, and we won't give him goofy juice because it is like trying to lightly sedate a rhinoceros.  So, I'm thinking, in reality, surgery will begin around 8ish.

The initial estimate was 2.5 hours, but I think that the doctor has added some things and we are now looking at 3.5 hours....crap.  I just realized that I probably should have called his GI and Pulmonologist to see if they wanted to hop in on this one because he has a couple of scopes coming due.  Oh well.  I always forget to contact the masses.  Anyway, around noonish he should be waking up with a cast.  Woo hoo (does the sarcasm read here?).

He will be spending the night in the hospital.  Right now it appears that we are scheduled for the general floor (gag), but they may change their mind and send us to PICU (yay).  Either way, the little man should be out of the hospital by Wednesday unless there is some unknown complication.

We have been showing him pictures of kids in casts, and telling him he will look like Astro Boy when he wakes up.  I hope that will help cushion the blow, but you never know.  Tomorrow I will ask his doctor if she can cast Paul so that he won't feel so bad.  That can't be a new request, so we'll see.

I will try to update facebook regularly on Tuesday, so check there for updates.  Just don't get nervous if you don't hear anything for a while -- this is a long, and very exact procedure that we are undergoing.

On a brighter note, here are a few pictures from this week:


Everett and his "hot mittens".




Everett doing "muscles" while wearing his "hot mittens"




This is the stool from Bachan's room. Everett likes to pull it into the livingroom and watch tv on it.







xoxo
Margot

ECI Annual Review and other stories

I know! Nothing for months, and then 3 times in one week! What is this world coming to?!?  Well, I promised more posts, so I'm sure going to try...at least for this first week.

KP has had hearts on the brain lately.  When we are drawing, I tag every new piece of paper with "KP ♥ ".
Well, yesterday morning, we were drawing before school, and I tagged his paper, and he said, "heart", and then pointed to his chest.  He kept doing it until I said, "is there a heart right there?", to which he replied, "hai" (his version of yes).  I'm not sure where this kid is learning all of this, but it is certainly blowing me away.  I'm thinking that internal anatomy is not on the 2 year old curriculum....anywhere.  Yesterday afternoon, his teacher at school was writing on the parent board and asked the kids what they thought she should put on the board, and KP suggested a heart.  Because he loves us. :)

Today we had our annual ECI evaluation.  I wanted to link back to last year's post about his evaluation, but all I could find was this one about the appointments that came out of it.  As a refresher, last year, as a 14-month old, KP was testing at around a 6 month level.  ECI assigned us a Developmental Specialist and a Deaf Ed teacher, both to see him once a week.

In one year, he has progressed two -- according to his Deaf Ed teacher.  The results are in:
Cognitive: 33 months
Receptive and Expressive Language: 28 months
Fine and Gross Motor: 29 months
Self-help: 30 months
Social-Emotional: 30 months

At this point, the only reason he still qualifies for ECI is because of his diagnoses (VACTERL, unilateral deafness, cleft palate, etc).  Because ECI services will terminate when he turns 3, we also talked about his transition plan at that point, and the consensus seems to be that he may be able to skate by on his diagnoses, but if they base it purely on evaluation, he will not be eligible for PPCD (Pre-school Program for Children with Disabilities)!!  While it will be a sad day for us to say goodbye to our wonderful team that has helped get him to this point, it will be a glorious day as well, because it means that we have reached our goal.

We are so proud of our little man today (well, let's be honest, we are everyday).  He has faced so much, and has not only overcome, but excelled!

Everett Alexander 2.0

I know it has been a while.  Now that we're caught up with the pictures, I would like to share some of the general things that happened over the summer/this fall, and also announce some changes.

Over the past year, I have been experimenting with including more pictures on the blog.  I know that many of you don't really get to see KP very often, and this may be where you turn to see how handsome he is or how quickly he is growing.  However, I have also noticed a drastic decline in the frequency of posts.  This is due to a combination of things.  One is that we just don't take as many pictures as we used to because KP is a man in motion.  We take videos sometimes, but those are harder to edit and post.  Which brings us to the second reason.  Once we do get pictures, they have to be edited (which hasn't been happening lately), and the upload and publishing process is a bit more involved.  So, you get pictures, but not much information.

I have been trying to figure out where to go with this blog now, and that has caused me to re-evaluate our target audience.  Our readership is way down from 2 years ago, probably because KP has become boring compared to the minute to minute happenings of his newborn life, and also because posts have become so infrequent and unreliable.  So, ultimately, who am I writing this for?  At the end of the day, I keep writing for us, and for Everett, so that we can get this all published out in a book for us to keep here as a modern day baby book of sorts.  Hopefully, this will be a record for KP to look back on and see how busy his young life was, but also to show him how strong he is, in case he ever doubts himself.  Maybe it will serve as a record for him to look back on when he himself becomes a parent, and he can see that his parents went through many of the same struggles as he is going through.  Maybe he'll see that we didn't always know all of the answers, and that will provide him some comfort.

Whatever the purpose, I feel that I am doing a disservice by focusing on the photos so much, because KPs story is being neglected while I wait for pictures, or wait for time to edit and publish pictures.  So, from here on out, I am going to attempt to post more frequently.  This is not to say that we will never have pictures again, but I would like to return to our roots where the pictures just enhanced our story.

Let us begin the recap:

Hand Surgery


After KP's visit to Scottish Rite, where they told us that they would wait yet another year before operating on his thumbs, we made the decision to search out a second opinion.  At this point it was not a matter of "if", but "when", and we felt that a 2 year old with a cast would be much better than a 3 year old...well, maybe not behavior wise, but there is less impact on a 2 year old's activities with a cast than a 3 year old's.  Anyway, we found a wonderful hand surgeon, and scheduled surgery for October.  KP decided to get a runny nose and a cough the day before surgery, and let it fully be known in the doctor's office, so surgery was rescheduled to November 17 (Happy Birthday, Mimi).  In the coming weeks, we will be pumping KP full of zinc, and airborne, and anything else I can think of to try to pump up his immune system and keep him well so surgery can happen.  It is always tricky to try to do things this time of year, but with our work schedule, it is near impossible to do anything over the summer, so flu season it is. :)

This surgery will be on his right hand.  We will do his left hand after his right hand has healed.  For his right hand, the doctor will take a tendon from the top of his right index finger and redirect it to his thumb.  This will give him the ability to pull his thumb up.  She will also take a tendon from the bottom of his ring finger and redirect it to his thumb.  This will hopefully allow his thumb to come in toward his pinky, giving him a pincer grip.  While he is under, she will also deepen the webbing between his thumb and forefinger to give him a bit more mobility.  He will be in a cast for a little over a month after surgery, and then will get some sort of OT to help him relearn his hand.

School

KP was registered to begin school at Little Saints this fall in a 2 day a week program.  In August, our nanny flaked out on us without giving us notice, and so we were forced to reevaluate our plan.  This ended up being one of the best things that happened to us.  We found a wonderful preschool for Everett. He loves it, we love it.  He is in the Level II classroom, which is set by their age on September 1.  This was very important to us, because once he enters school, that is the standard that he will be held to, so we figured it would be best to start him now.  He has made many friends at school, and after they are done with curriculum, they have a bunch of different activities that the kids do.  We enrolled late, so he is not enrolled in a lot this fall, but next year we will probably take full advantage.  Right now he does a tumble gym once a week that he loves.  At school, he is learning how to listen, and how to share and take turns.  A lot of the blog from here on out will probably have stories from school that his teacher has shared with us. :)

Potty Training

Potty training is still a work in progress with KP.  He knows what to do.  He knows when to do it.  This week he is in a refusal stage.  Also, we are still messing with his meds.  We have pretty much given up on messing with his diet.  There are just too many variables right now.  When he gets older, we will teach him about how certain foods affect his bowels, and give him the choice of backing off of his meds in favor of controlling by diet, but we just aren't there right now.  When given a choice, he makes good food choices, but the options have to be there.  And, since most kids sneer at whole grains, they are not often offered at school.  This weekend we started the pull-ups to get him used to them.  We hope that as he uses them more at school, it will translate into him wanting to use them more at home.  Right now, we're still ahead of the game.  His doctors don't think that IA kids should be potty trained until they are 3, so we're good, but he can't move on to a Level III classroom until he is.  So, the more we work on it, the better.

The Library

I have rediscovered the joys of having a library card.  In college, the library started meaning something totally different to me than it did when I was growing up, and I have just rediscovered the loveliness of the pre-college library. :)  KP has loved it because there is a story line that you can call, and you press a button and there is a recording of someone reading a story.  Also, it has given us the chance to try out some different material for KP that we probably wouldn't have tried otherwise.  Most recently, we checked out a DVD of trains, and a Thomas the Tank Engine read along book/CD set.   KP loves books, so I look forward to a lot of fun in the future.  Hopefully we will be able to make it to a story-time soon. :)

In general

KP has been developing nicely.  He is speaking in 4 and 5 word sentences.  He is very opinionated, and very independent.  He has been taking instruction well, so it helps a lot when he is having trouble with something, because we can talk him through it (because if we touch it, he will tantrum).  I've been finding this age tough to navigate, so I hope the next stage will be easier.  I can't figure out right now if we are encouraging his independence, or letting him walk all over us.  I think it is a fine line, and it is tough figuring it all out.  Whew.

Stay tuned.

xoxo
Margot

October 2009

As I said in September, this whole shoe thing is out of control. Every day KP strolls around the house in whatever shoes we have left for him.





KP is at that "kiss it and make it feel better" stage. Mix in some of that 2 year old independence, and this is what you get. KP stubbed his knee, and spent the next 10 minutes trying to kiss it and make it feel better. :)





KP is also an iPhone pro. His newest discovery is Doodlebuddy, which he plays with almost daily. This is one of his many creations. :)





The week before Halloween, KP and I bought his trick or treat pail. It was a close call between Thomas and Elmo, but Thomas won.





And then we visited Mamaw and Papaw. Mamaw put up a tent in the livingroom for KP to play with. We got to hang out with Mamaw, Papaw, Uncle Josh, and Uncle Jam Jam.





On the Friday before Halloween, KP had a trick or treat parade at school. He refused to wear his costume because he wanted to be dressed like his friend, Brady, who was dressed as Nemo. Good thing he had on his ghost shirt.





















Checking out Brady's bag -- to make sure that he doesn't also have better stuff on top of having a better costume. :)





Plotting to steal Brady's costume with Travis





We finally got KP into his own costume on Halloween afternoon after much bargaining.





I didn't say he was happy about it.





But he came around













Big Daddy Lion





Together, they make a full costume.





We went to Mimi's for Halloween.





Grandpa Mike and KP

















The lions visited G-daddy, too.





G-ma made KP a wonderful treat basket full of grapes, strawberries, cereal bars and teddy grahams! KP was sooo excited!