The House of Doo

The House of Doo

Tuesday, September 25, 2012

More Surgery Ahead

Yesterday, Ryan took a vacation day and we took Colt to his eye doctor here in Chattanooga, Dr. Peterson, to discuss what happened in Akron and plan our next step for Colt’s eyes.  Again, we got a little nervous to talk to him about what another doctor said, but he took it well.  He actually thanked us for being willing to do anything and everything to help Colt.  He said “You have no idea how hard it is for me to get parents to take their children across the street to get glasses, much less put them on a plane to fly to Ohio.  And the glasses are free!”  That made me so thankful to have him as a doctor.  He understands that nothing will stop us from getting this fixed and wants to be a part of it. 

So, he will do Colt’s third surgery this Friday.  It usually takes us a couple of weeks to get a surgery scheduled, but he seems to feel our desperation and worked us in!  The last surgery was only on his right eye, but this one will be both eyes like the first surgery.  This surgery will be different in that he will be moving the muscles on the outsides of his eyes instead of the insides like the two previous times.  He seems pretty confident there will be a fourth surgery, but I pray to God that this will be it.  I said before that we are getting to be pros at this surgery/recovery thing, but honestly, it is getting harder for me each time.  Granted, now I know what to expect when we go to the hospital and what recovery will be like, but the older Colt gets, I know he is more aware of what is going on.  The first surgery, he didn’t cry when they took him away from us.  The second time, even with his “relaxation concoction,” he cried.  This time, he is bigger and stronger and much more aware of Mommy and Daddy and I hate to think about what he feels when they carry him down that hallway.  Does he wonder why we are letting this happen?  I can’t stand the thought of that.  Sad face.  Please keep him (and us!) in your prayers this week.  I know you all are, we have felt them, especially on surgery days and during our trip to Akron.

We also got a call from the Pediatric Neurology Development Specialist yesterday.  We have an appointment in March.  That is great, because we were preparing for June! 

I may have mentioned before that Ryan and his best friend, Jody, have decided they are going to build Colt his own little playground in the backyard for his second birthday at the end of October.  Well, they started building it this weekend and I am stoked.  I was pretty skeptical at first, but now I see they are serious.  Jody’s wife (and my dear friend!) Lauren and I were pretty sure the playground wouldn’t be finished by Colt’s birthday, but seeing what they have done in the past two days, I now believe they might make it.  It will be complete with two levels, a swing, a slide, and a sandbox!  It will also be take-apart-able so we can take it if we move!  J  I will be sure and post about the finished product!

Here is the beginning of the bottom platform

I am more excited about this playground after we took Colt to the playground/park not far from our house twice this weekend.   He climbed, he slid, he swung (?), he played in the dirt and he loved it!  I may never be able to get him off of the one in the backyard when it is built! 
This kid loves to swing!

He also loves tunnels!  We need to have one at home!
I guess that’s all for now.  I’ll probably update after Colt’s surgery sometime Friday.  Thanks in advance for your prayers! 
Colt models my Oakleys.  He has the pouty-mouth-model-face down.

I'll leave you with a different side of our beautiful city, Chattanooga. :)

Thursday, September 20, 2012

Our Akron Trip

Well we have been back from Akron for a week and I am just now getting around to blogging about it.  My work schedule has been a bit off and I am still having a standoff with Comcast, so no internet at home. 
Anyhoo...  Our trip was a success in our minds.  The travel went amazingly well with a toddler.  I was prepared for much worse.  We made sure we had something for Colt to drink during take-off and landing and it didn't seem to bother his ears. We brought our little DVD player with Bee Movie and he watched it without making a peep during the first flight.  We landed in Charlotte and had a 2 1/2 hour layover.  We decided to have lunch at the Chili's inside the airport and while we were eating, Colt kept laying his head on the table and falling asleep.  Poor kid was exhausted.  Long story short, he didn't get any sleep in the airport, there was way too much going on.  We got on our second flight from Charlotte to Canton-Akron and Colt was passed out before the plane left the ground.  He slept until it landed in Canton.  I couldn't have been more relieved.  We get off the plane and went to pick up our rental car.  Now, let me set this up.  Ryan and I do not have a credit card.  I think they are nothing but trouble, UNLESS you are trying to rent a car.  My dad and Judy let us borrow their card to rent the car with, so we were good with that.  We had reserved a car with Enterprise, along with a carseat.  When we got to the counter, they had reserved us a FLIPPIN' FIAT!  For 3 adults and a carseat!  REALLY?  Obviously, we were going to have to upgrade if we wanted something bigger, and when we went to pay, he wouldn't take the card because it wasn't mine.  So as we're standing there trying to figure out what to do, the guy says in the most cocky voice I have ever heard "well there are plenty of taxis out front."  Taxis don't come with carseats, jerk.  I was in tears.  ANYWAY, we found the Avis counter and we worked out a deal with them where they would use our debit card and just put a $200 hold on it until we returned the car.  They let us pay with my dad's card, so it can be done.  Grr.  The lady at the Avis counter was super nice, so we'll definitely use them if we ever have to rent a car again. 

So we finally get the car and make our way to our hotel, a really nice Fairfield Inn that a friend got us booked with.  As soon as I walked up to the counter, the manager came out and said the only room left was supposed to be ours but it was "unrentable."  Hm.  So, he said "We've booked you a room at a place down the road and it's on us.  Your stay will be free."  Sigh.  Okay, so we get all of our stuff and Colt back into the car to go find the Ramada Inn down the road.  Not going to lie, it was a really skeezy, dirty place.  I've stayed in Ramadas before and this one was not like the others.  I kept saying to myself "There is a reason we are here.  God has us here for a reason."  When we checked out Thursday morning, I still don't know what that reason was.  But hey, it was free. 

Wednesday morning, we got up at 5:45 for all 4 of us to get ready and find our way to the Children's Hospital.  We got in immediately and they took us to meet Dr. Hertle.  I loved him instantly.  He was great with Colt and kept his attention without making him cry, which is the problem we usually have.  You have to bear-hug him to keep him still while making him keep his eyes open, which totally freaks him out.  We didn't have that problem at Dr. Hertle's office, he was great!  After our initial meeting, we were taken to a room for an Eye Movement Recording Test.  The doctor performing the test was the cutest little Asian man I have ever seen.  I held Colt while he was to watch some images on a screen, while there was a camera in his face recording his eyes.  This test could take up to an hour, but only took about 20 minutes because he cooperated so well!  Then he reached for Dr. Yang and Dr. Yang took him and said "Oh. He's heavy!"  Colt was as big as the doctor!  It was so funny, but they just took to each other.  He held Colt for about 5 minutes.  Adorable. 

Next came another test that I can't remember the name of, but they taped electrodes to Colt's forehead and then glued them in his hair.  Let me tell you, that caused the fight to come out in Colt.  It was ugly from the start.  He pitched the biggest fit about those electrodes and wires coming from his head that I didn't think it was going to work at all.  She let us take a break and get him calmed down.  The only thing that worked was his daddy's iPhone.  Figures.  That Disney Junior app saved us!  We finally got him calmed down enough to begin the test.  The lady said it can sometimes take all day to do.  You've gotta be kidding me!  Anyway, it did take a while because a red dot on a computer screen is not nearly entertaining enough for a toddler, let me tell you.  I am certain that pitching that fit wore him out, because after that he cooperated like a champ until she said we could quit. 

The next test was easy.  It was to test the acuity (or sharpness) of his vision.  They held up big cards with lines on one end to see how quickly he found the lines.  He did well with that test.  After that test, they dilated his eyes and we waited to see Dr. Hertle again.  He then told us what kind of Nystagmus Colt has, what he thinks our doctor should do for our next surgery and that there is something our doctor said that he agrees with. 

First of all, Colt has what is called Fusion Maldevelopment Nystagmus Syndrome.  The previous name was Latent Nystagmus, which is much easier to remember. ;)  Basically it means that his Nystagmus will go away when we get his strabismus fixed.  It is already much better than it was before his first surgery, so it's good to know it will go away completely, when we get the other problem fixed.  Now, Dr. Hertle had a suggestion for Dr. Peterson in how he would do the surgery.  It will be much more invasive than the last two, but whether Dr. Peterson will want to do it that way or not, we will find out this coming Monday.  I am anxious to see and have a date for our third surgery. 

Now.  Dr. Hertle agrees with Dr. Peterson that Colt has some kind of underlying neurological problem.  They believe this is why his eyes are not responding to the surgeries the way others do.  They think this could also explain why he isn't talking yet and why he is slightly motor delayed.  Luckily, Colt's understanding is there, he's obviously very smart, so it isn't a problem that will hold him back forever, it's just hindering him now a bit.  It was suggested we see a neurologist and pediatric neurology development specialist soon.  On our way home on Thursday, we called our pediatrician to leave a message about that.  He called us back that evening once we got home and talked to us for about 20 minutes.  He said he'd make our appointments for us at both places, but it would be months probably, due to the high demand of those specialties.  If anyone in the Chattanooga area is in need of a good pediatrician, Dr. Josh Smith is amazing.  AMAZING.  He has helped us get things done in a week's time, when others told us it would take months.  He even called us on his off-day last year to tell us the results of Colt's MRI so we wouldn't worry all weekend. 

So.  There we are.  Happy our doctor is doing everything the way the best doctor in the country would, happy that we know the type of Colt's nystagmus, happy that we have hope it will go away, but anxious to see what the neurologists say, and anxious to see how many more surgeries Colt will have. 

If you made it all the way through, CONGRATULATIONS!  ;)  Thank you to everyone for the prayers and well wishes during our trip.  We are truly blessed to know such helpful, wonderful, supportive people.  I'm including some pictures from our trip below. :)

Colt and Daddy checking out the planes


Only my kid eats berries at the ice cream place.  He won't eat ice cream!

Rock and Roll Hall of Fame
Passed out on the plane 

I can do it myself, Mom!

Playing at the Children's Museum after the doctor

Whoa, my eyes are still dilated!

Bee Movie on the plane. :)

Waiting on our plane

Lake Erie in Cleveland
Ready to go home!

Thursday, September 6, 2012

Guess What!!!

Colt said a word today!!!!! 

When I dropped him off at his Mimi's this morning, she asked him if he wanted breakfast.  Without missing a beat, he very excitedly yelled "yeah!!!!!"  We asked him something else and he said "YEAH!!!!"  

Hooray for small victories!  She's been trying to get him to say it again all morning and refuses, but hey, I'll take what I can get!  :)

Tuesday, September 4, 2012

One More Week until Akron!

Well, we are one week out from our trip up to Akron to see Dr. Hertle.  I have never been more anxious about anything in my life, I am sure.  I keep having nightmares and waking up with my jaws tight and sore, and headaches, maybe I'm grinding my teeth in my sleep? Blah.  I am terrified of traveling with Colt on the plane.  What if it hurts his ears or he cries the whole time?  What if he wants to run up and down the aisle and fights us the whole time?  We are flying out of Nashville and on the way there, we have a 2 1/2 hour layover in Charlotte.  On the way back, our layover is in Atlanta and is 3 hours!  Then we fly OVER Chattanooga to Nashville, then get in the car and drive two hours back to Chattanooga.  I am NOT EXCITED.  I am, however, thankful that we have this opportunity to see this doctor and keep trying to tell myself that it worked out so easily because this is what God has planned for Colt.  If this is in His plan, He will work it out.  I need to give it up and quit worrying so dang much. 

Today, I reserved us a rental car and carseat and Mapquested (yes, I used that as a verb!) our route from the airport to the hotel, from the hotel to the hospital, and back.  I printed off our flight iteneraries and hotel information, and made a list of all of their phone numbers, in case we get lost.  I ordered some "number beads" to make a bracelet for Colt to wear with my cell phone number on it, in case we get separated in some freak incident.  I am the queen of non-planning, but I have to say, I think I've got us covered with this one.  Again, it's got to be a God thing.  ;)  I know He's got our back. 

I also found out today that Ryan's brother, Ronnie, is going to go with us on our trip.  I thought we would be okay, but now that I know he's going too, I feel quite a bit better.  That's one more person to help entertain him and hold him and carry him during these three days.  He is taking it upon himself to pay his own way with his teacher salary and help us.  Ronnie, if you read this, I am enternally grateful and relieved to know we will have one more set of hands to help, especially the hands of someone who loves Colt so much. 

In other news, there isn't new much going on in the Doolittle family.  My stepdad only has one more chemo treatment left and it is the day we leave for Akron.  I am excited for him, and pray his next scan is clear.  If it is, he doesn't have to have radiation.  That would be great, seeing as he would have it five days a week for six weeks, and his doctor is at least 45 minutes away (on a good traffic day)! 

I did a little bit of crafting last week and made a new fall wreath for my front door.  It was really simple, just took a grapevine wreath, some fall leaves,hot glue, and some raffia.  I intended to use a wooden "D" on it too, but after the last one, I decided against it.  The hot glue is just not enough, I ended up having to tie it on with some twine and it wasn't the look I wanted.  So I skipped the "D" this time. 

This weekend, we ventured out to Walmart (I usually try to avoid that place like the plague) and dug around in the $5 movie bin.  We got "Bee Movie," "Horton Hears A Who," and "All Dogs Go To Heaven 1 & 2."  We haven't made it to the last three because Colt can't get past "Bee Movie."  He LOVES it!!  We have watched it all the way through six times since Friday.  I have never seen him sit still so long!  It is my new go-to movie while I cook dinner.  I don't feel so badly about putting him in front of the t.v. if it is to cook him a good meal...makes sense, right?  ;)  I also found one of those DIY Fringe blankets at Hobby Lobby recently with the Cars characters (another of his favorites!) on it.  I have seen it before and carried it around, then decided I shouldn't spend the money.  I finally gave in when I saw it on sale and I am glad I did.  I spent his naptime one day cutting and tying, washed it and gave it to him that evening.  I swear, you would have thought Lightning McQueen himself was in our house!  He LOVED it!  I'm so glad! 
Colt with his new Cars blanket, his little Cars car in his hand, watching Cars on t.v.  ;)
So.  That's it for now, I suppose.  I'll update when I can after Akron, or maybe before if anything exciting happens.  I hope everyone has a good week!