The House of Doo

The House of Doo

Thursday, June 27, 2013

Just a YES or NO would be great.

On my way to work this morning, my cell phone rang and Dr. Miller's name popped up on the screen.  When I answered, it wasn't Dr. Miller himself but what seemed to be a receptionist just passing along a message.  She said that Dr. Miller had the two MRIs compared and didn't see anything that "couldn't wait until we saw the geneticist."  WHAT KIND OF ANSWER IS THAT???  I needed a "Yes, the damage was present during the first MRI and overlooked" or a "No, the damage was not there during the first MRI, so now we have a different issue." 

I am angry, needless to say.  Why in the world is it so freakin' hard to get a straight answer out of anyone???  What is so hard about YES or NO? 

In other news, my kid is cute. And happy.

Thursday, June 20, 2013

Neurologist Visit.

We saw the neurologist this afternoon, but didn't get too much information really.  All of the tests they did last time came back negative.  There were two "biggish" things we did get done though.  I have mentioned before that Colt had an MRI at Vanderbilt when he was around 5-6 months old.  At that time, it was done because of his nystagmus but it came back clear.  The MRI that was done in March of this year was the one that showed the damage to his brain.  This brings up a couple of questions.  Is something that is degenerative because it wasn't on the first MRI but on the second, or is it something that doesn't "show up" until later in life, or is it that the first radiologist didn't notice what the second radiologist did.  SO.  We asked to have the first MRI sent over so that the same radiologist could view both MRIs and tell us if it was present during the first one and just overlooked.  Dr. Miller told us that sometimes things can get missed, especially if they aren't looking for it.  So, hopefully we will have an answer to that very soon. 

Next, I asked Dr. Miller flat-out "Could this have been a stroke?"  He said no.  Honestly, I had kind of accepted that was what it was and I was at peace with it, so it is a little disappointing.  Maybe I just want an answer and want it to be that it isn't degenerative.  We truly don't feel like it is, but know they will find out so we don't have to wonder anymore.  Bah.

Dr. Miller continually asks us if Colt has had a seizure.  I mean, it never ends.  It's like he's waiting on him to have one.  Like that will help him decide what's going on.  I hope that never happens.  He seems concerned still about the size of Colt's head, but isn't "alarmed."  It is WAY off the charts in size, but I still think it's just because he's really a genius.  ;) 

We didn't really get any answers that can help us move forward, but I wasn't really expecting them today either.  He is anxious to see what the geneticist says and if her tests can help guide him in a different direction. 

We again mutually decided with Dr. Miller that we didn't want Colt to be a "lab experiment."  If he really thinks a test will provide an answer, we'll do it.  If it seems like a long shot, we're going to pass it up for now.  As Colt gets older, it gets harder to hold him down.  Also, it bothers him longer and seems to cause nightmares afterward for a while.  We can't do that anymore, if we don't know for sure it will help.  So, there we are.  :)

Tuesday, June 18, 2013

Two Week Catch-up.

It has been a couple of weeks since I last posted.  I was full of good news then and I don't have much different today.  Granted, I don't have much "news" at all, but really nothing bad.  I am always thankful when that happens.  ;) 

Last week, my college roommate, Leah, and her husband, Daniel, came to visit.  They were here Tuesday through Thursday and I always miss them desperately when they go back home to Birmingham.  They are amazing and come to visit us often, though we haven't made it to Birmingham yet.  I vow to do that this year, but it's hard with Ryan's work and I am kind of afraid to drive that far with Colt by myself.  Maybe in the fall.  :)  Anyway, we didn't do a whole lot, just spent time together and ate and shopped.  We did get Colt's hair cut and it looks much better.  Wednesday morning, Leah and I both went to take showers and I left Daniel in charge of Colt.  I was in my room getting ready and I could hear Daniel and Colt through the baby monitor that I had forgotten to turn off.  They were slamming doors and laughing and talking up a storm.  I could not figure out what was going on!  I hurried to get ready, then went into Colt's room and they were nowhere to be found.  Finally, I hear a noise coming from the closet.  I opened the door and there is big ol' Daniel, crouching in Colt's closet, while Colt is on the other side opening and closing the door.  It was hilarious.  Daniel was just doing whatever Colt wanted to do, bless his heart!  Ha!  Anyway, I am so thankful for them and their willingness to come visit us.  :)  Here are a couple of pictures from their visit. :)

 Silly buddies

 Snuggling before bed.

Haircut and an ice cream cone!

In other not-so-important news, Ryan and I have been on a diet.  The 17 Day Diet.  You may have heard of it.  If not, it doesn't last only 17 days, each "cycle" of the diet lasts 17 days.  I did it two summers ago and lost 20 lbs, but didn't continue in the Maintenance Cycle like I should have.  We have been doing it for about a month now and I am down 10 pounds!  I have lots more to go.  Ryan hasn't weighed in a few days, but I know he's lost a few more pounds than I have.  Ugh, men. 

Colt is still trying so hard to talk!  He makes new sounds and sometimes new words almost daily!  He says "Eee-ahh!" (Leah!) and he was saying "Daniel" pretty plainly, but now he says "Bo-bo" when you say Daniel.  Ha.  He's saying "yellow" also, but not like we say it.  ;)  I love hearing his little voice!  It is starting to sound more like a kid voice and less like baby babble.  :)  He is still loving school and continues to say "eat!" every time I ask him about it.  Ha!

On Thursday, we go back to the neurologist.  I have no idea what they will do.  I am not sure if he will want to do more testing or what, but I am very anxious to find out.  Then next Monday, we go back to the ENT to have his ears rechecked and see if he needs a second set of tubes.  So, that's where we stand with Colt's health.

My stepdad is doing well, though still doing chemo.  He will have an MRI next Tuesday the 25th, so please keep him in your prayers when you think about it.  I pray that the cancer is responding to the chemo and that it continues to shrink.  Please do the same, if you will.  :)

 I can't get enough of these grins. :)

Father's Day silliness!

Thursday, June 6, 2013

My cup runneth over.

So much has happened since my last blog entry!  We got moved into our new house, first of all!  I am so happy to be there and love being back in Flintstone.  I do miss our old house though.  This one is quite a bit bigger and has a finished basement that makes an excellent playroom for Colt, but there were so many memories in the other house.  It makes me a little sad, but I look forward to making new memories in this house.  :)  The house is still an absolute wreck, but it is slowly coming together.  The boxes are getting unpacked a little at a time.  The kitchen is finally all together and to me that makes the house seem more together.  That is a very important room! :)  I am struggling with where to put things on the walls and making it seem like home to Colt without it being almost identical to the other house.  Hm.  That's a good problem to have, I suppose. :)
Colt's playroom!  Thanks, Ryan!

Colt has been making HUGE strides in just about everything, really.  He is now (sometimes!) calling me "mommy" instead of "mama."  That makes me feel like my heart is going to explode!  Y'all.  I can't even tell you what that does for me.  He has also been saying "Mimi!" a lot.  That is what he calls Ryan's mom, Kim.  She hasn't heard it yet, but I know she will be happy when she does. :)  He has started calling Ryan "Gaga" for some reason.  Ryan hates it.  Ha.  ;)  He says "Tuhkah!" (Tucker), "bawbaw" (baseball), "lulu" (I call our dog Lexie Lulu), "eat" (figures), "bubble" (pretty plain!) and he's trying VERY hard to say "hula hoop" (random, I know.  He got it from Alvin and the Chipmunks.  "Me, I want a HULA HOOP!" You know the line...)  He has also started to nod.  Yes, I realize that sounds so silly, but when your kid can't tell you "yes, that's what I meant/want/said" then a simple nod can save you a lot of distress trying to figure things out.  I love, love, LOVE that we are being able to communicate!  He is signing up a storm, constantly.  He's always just throwing out these signs that I had no idea he even picked up.  I think I have mentioned before that we have a cd we listen to in the car that is from our My Smart Hands signing class.  He LOVES it.  He does the signs a beat before the word we're supposed to be signing now!  He knows them all by heart.  A couple of his favorite signs are "happy" and "grumpy."  Every morning, I ask him which one he is.  He always says grumpy first, then smiles and does happy, like he's saying "Just kidding, Mom!"  He says "Mama!" then signs "happy" like he is asking me if I am happy.  I always say "Yes, you make mommy happy!" and he smiles and nods like he understands. :) 

This week, Colt started a new "school."  It is really a Mother's Day Out program at a church in East Ridge.  It is Tuesday and Thursday from 9 - 1 and it is Colt's first time away from anyone in our family, really.  I mean, we leave him in the nursery at church, but we're in the building somewhere.  I was so very anxious that I wasn't sleeping and I cried like a baby when I left him on Tuesday.  I actually know the woman who coordinates the whole thing.  We grew up together and went to school together, so that made me feel more comfortable about leaving him.  Then when I got there, I knew his teacher too!  I grew up and went to school with her too!  That helped a lot.  So anyway...  I have a story.  After the long day, I couldn't wait to "talk" to him about it!  I asked him what he did at school and he said "eee eat"  over and over and over.  Finally, I saw on the MDO facebook page that they had talked about Adam and Eve.  I asked him if he learned about Adam and Eve and he said "eee eat!"  I finally got it!  He was saying "Eve eat!"  I asked him about that and he did the sign for "apple!"  We asked him if Eve ate the apple and he nodded.  It was so cute!  He went through all these signs and sounds and made us understand what he was saying.  That Eve ate the apple and they got in trouble!  Ryan and I just stood there in disbelief.  We were so proud!!  :)

This morning when I dropped him off, Megan said "Colt stole the show on Tuesday! We love him!"  Then when I saw his teacher, Rebecca, she said "He is the sweetest, most loving little kid I have ever met!"  I am seriously beaming.  :)

So, there we are.  Life is good.  My cup runneth over.

 These smiles.  Oh my.