The House of Doo

The House of Doo

Tuesday, February 26, 2013

Just keep swimming...

We have survived another weekend and despite the news we received on Friday, the weekend was really great.  I try not to forget how blessed we are, but this weekend it was even more evident.  We have the most supportive family and friends we could ever ask for.

I got the call from the neurologist at work on Friday.  Most of you know that Ryan and I both work for my family and I have never been more thankful to be with my dad and stepmom, Judy, than I was after that call.  Ryan wasn't here in the office then.  As soon as I hung up, Dad and Judy both came to me, hugged me, listened and let me cry.  Then Dad prayed with me and I honestly felt like a weight was lifted.  I knew then that even though the burden seems heavy sometimes, Ryan, Colt, and I do not carry it alone.  We will be able to provide the best doctors, the best school, the best whatever that Colt needs, thanks to our families.  He will be okay.  He is brilliant.  Honestly.  I know that's my job as a parent to think so, but seriously, his comprehension is amazing.  That helps me feel better.  :)

I got out my sign language book this weekend and started to try to learn some new signs, since we have no idea when Colt will talk or if he will ever talk.  I had my heart set on 2013 being the year that he said "I love you" but from what I heard, it seems that will have to wait.  It's okay, I suppose.  I know he loves us, he makes that very evident.  :)   It has been hard on us, especially Ryan, to hear that our son was born with brain damage.  I heard it when the doctor said it, but the first time I had to say that out loud this weekend, it struck me how serious it is.  Brain damage.  That's terrifying.  I feel like I am still in shock.  So many responded to the last blog post about how the brain is an amazing thing and I am hopeful Colt's can create new pathways and solutions to the problems he is facing.

Friday afternoon, I had to go get my driver's license renewed and Dad told me how to get there by taking a back road I had never driven before.  It was a good by myself thinking time.  I got to thinking about the trip we took to Akron last September.  We went to see an eye specialist and honestly, we didn't get a whole lot of information.  He was great, we did learn the kind of nystagmus Colt had and some little things, but it seemed like a lot of money for small answers.  On my drive Friday, I had kind of an epiphany, if you will.  That doctor, Dr. Hertle, was the one who suggested that we see a neurologist.  It didn't make a lot of sense then, because Colt wasn't even two years old yet and it wasn't quite as big of a deal that he wasn't talking yet.  Now, looking back, it seems like that trip had a HUGE purpose, though we couldn't see it then.  He was the one who, unknowingly, pointed us in the right direction for these answers that we got on Friday.  I see it now.  Life is all a big puzzle with weirdly shaped pieces and lots of times, we don't see how they could ever fit together.  But they do.  Eventually.

Saturday, Ryan and I took Colt and Tanner to the Tennessee Aquarium.  I took Colt a few months back and it didn't go well, but we really wanted to get out of the house and have some fun.  I am so glad we did.  We all had a wonderful time.  Colt loved it and he also loved that his cousin Tanner tagged along.  We ended up buying a membership, because it was only $35 more to be able to go for the rest of the year as many times as we want.  I'm excited to go again, though probably not on a Saturday.  It was packed.  After the Aquarium, we stopped at Dad and Judy's house.  Dad and Tucker were working on the tractor so Colt got some good tractor time in.  He LOVES tractors, so he was in Heaven.  I'll post some pictures from our day at the end of this blog.

Sunday, we had church and all that comes with it.  It was a good day that ended even better, because my college roommate, Leah, came to visit and stayed two nights with us.  I adore her and am so thankful we have stayed close, even though we have lived in separate states for the past 5 years.  Also, Colt adores her.  Heck, even Ryan does, though he likes to pick on her and pretend he doesn't.  We missed her husband, Daniel, this time but he had to work and couldn't come.  I am thankful for the laughs she provides and endless answers to my medical questions about Colt. ;)  So, thanks for coming, Leah.  It meant more than you know, especially this weekend.

Tomorrow, my stepdad, Allen, has his biopsy.  His doctor already knows that it is malignant, but I guess they have to biopsy it?  They will keep him afterwards for a few hours, so please continue to keep him in your prayers.  He needs a miracle. 

The boys loved the Stingray touch tank.

Colt also loved the jellyfish.

Best of all, he loves Tanner!

Colt and Granddad bonding over a tractor. ;)

Pure joy.

Big boy!

Learning how to use the post hole digger.


Friday, February 22, 2013

Answers, at least somewhat.

We finally heard from the neurologist this morning.  I am writing it here because so many of you have prayed and asked about our sweet boy and honestly, I just want to write it/tell it once.  Thank you all for that, it has helped us through all the waiting.  It is a lot of information, but also still a lot of unknown, so forgive me if it doesn't make sense.  It doesn't all make sense to us yet either.

First of all, the MRI did provide some answers as to why Colt is different.  Apparently, the white matter in the back of Colt's brain is damaged or scarred.  Why, they are not exactly clear.  The damage is in the same part of his brain that is damaged when someone has a stroke, though he didn't have a stroke.  This can explain (somewhat) the reason why he isn't speaking yet. 

Also, the ventricles in this part of his brain are too big, also not explained just yet.  I don't know what that means or how it will affect him. 

There are different "gradations" or levels of severity for this and the neurologist just makes a guess at how severe it is for each person.  On a scale of 0-10 (0 = normal, 10 = the worst) Colt is about a 3.  I also don't know exactly what that means. 

The one thing they can tell for sure is WHEN this damage happened.  It happened late into my pregnancy, before he was even born.  It is most likely related to the polyhydramnios (too much amniotic fluid that I had) and my blood pressure and fluid retention while pregnant.  They don't know what caused me to have that, but sadly, it affects Colt now.  :(

So.  That is all we know for now.  There is a REASON for the speech/motor/developmental delays and the eye problems.  How it will affect him in the future is still unknown. 

We will discuss this further at our appointment with the neurologist in March and will have more testing to follow which will hopefully enlighten us about the future.  Please keep our special boy in your prayers.  Also, his parents and family. 

Thursday, February 21, 2013

Waiting and Bronchitis Round 2.

My poor boy is starting his second round of antibiotics for the bronchitis that has made a reappearance.  He has been sick more this winter than I can remember yet.  It never seems to end, combined with bloodwork and an MRI, neurologist visits, emergency room and urgent care visits, allergy tests, asthma, doctor visits and the like, he needs a break!  He's coughing so hard now that it's taking his breath and he just doesn't understand what's happening.  My heart hurts for him and it hurts because I can't just jump in and fix it.  Hopefully, this second round will do the trick.  As for the MRI results, we were supposed to hear something by today but haven't heard yet.  The anxiety is getting to me, I have the headache that comes from clenching my teeth, so I called and left a message.  I don't know if it will do any good, but I tried.  I'll update when I hear something. 

My stepdad, Allen, still doesn't know what the next plan of action for his second round of cancer will be.  He is at the mercy of the doctors and just waiting to hear.  I can't imagine how hard that is.  Please keep him and my mom in your prayers.  My mom just keeps saying "Doesn't God know how much I need him?  God can't possibly need him any more than I do."  I agree with her.  She desperately needs him.  I know God has it all in his big plan and all that, but I cannot imagine how this will go. 

Tuesday, February 19, 2013

The MRI and a HUGE prayer request..

It has been a very long day and it is not even lunch time yet!  Colt's MRI was this morning.  4:45 came really early, but we made it to the hospital and he was asleep and having his scan by 7:20.  This is the sixth time Colt has been put to sleep for something, but it was the first time they let us be in there when they put him to sleep.  In my mind, it seemed like a good idea and that it may be easier on Colt if we were there.  In reality, it was one of the hardest things we've ever had to do.  Holding him down while they put that stupid mask with the gas on his face was horrible.  He kept looking up at Ryan with these precious little eyes that asked "Why are you letting them do this to me?"  It took 5 adults to hold him down.  Two were grown men.  I hope we are never asked to be there for that again.  I was absolutely no help, I just stood there and cried.  I'm usually the strong one when it comes to this, but I just couldn't do it this time.  I could hear Ryan whispering "Colt, look at's okay, look at Daddy."  It tore my heart out.  Anyway, he was asleep in about a minute, but it seemed like ten.  Seeing his little body lay on the stretcher will forever be burned into my brain.  I knew he was just "asleep" but he didn't even look alive.  I watch him sleep all the time and he doesn't sleep like that. If they ask us to come back with them again, I don't think we'll go.  I can't imagine that it's easier for Colt to have his parents holding him to the bed.  Anyway, the MRI lasted about an hour, then he was in recovery for just a few minutes before they called us back.  He was crying, obviously, and ready to see us.  As soon as he calmed down a bit and drank a little juice, they sent us home.  We didn't have to stay long after that, nothing like when he has surgery.  So.  It's over now, Colt was a champ like usual, and he seems to be fine now.  I'm sure he'll be a little dopey and sleepy for the rest of the day, but we can handle that.  ;)  We should know the results by Thursday.  Our neurologist should call by then, if not, we're to call them.  After Colt's bloodwork, he called us himself, so I am confident he will do so again with this.  Thank you to everyone for your prayers.  The first hard part is over, now we wait for answers.  I hope they have some, I don't care to have Colt go through tests for months on end. 

Yesterday, our case manager came to discuss Colt's speech therapy.  I really like her a lot, she is very helpful and reassuring.  She is going to change Colt's plan to just speech and we'll stop the eating/chewing stuff.  She also changed our 6 month goal.  Our first 6 month goal was for Colt to be able to say two words together.  Obviously, we aren't there.  The next 6 months, we'll work on saying one word or at least mimicking a word.  :/  It frustrates me to have to go backwards with a goal, that's usually not what you want.  ;)  But hey, we'll get there.  I am thankful for these people and their willingness to help and coach us through this.  :)

I'll leave this post with that.  I know it was a lot.  Actually, you know I'll tack on some pictures.  They warm my heart, hope they do the same for you. :)

I am so proud of my nephew, Tucker.  He is growing into such an amazing young man.  Also, Colt adores him.  ;) 

Singing.  ;)  He's going to be a musician one day, I am sure of it.
Just cute. 
Waiting at the hospital this morning.  He was much perkier than his parents. :)
*Okay, I thought I was done.  I just got a call from my mom.  My stepdad had an MRI the other day to check to make sure his cancer hasn't come back.  He had an appointment with his doctor today.  I just kind of assumed that no news was good news, but I was wrong.  His cancer has come back in the cavity left from his previous cancer/pancreas removal.  If you know the history there, you know how big of a deal this is.  Granted, I suppose cancer is always a big deal.  I beg you, please, cover them in prayers.  

Thursday, February 14, 2013

To Chew or Not to Chew...

Yesterday's blog was written on my phone, so it was short and sweet.  Maybe I should do that more often.  My blogs tend to get lengthy.  ;) 

We had our second speech therapy session with our new therapist yesterday.  We've been going to the clinic and being there makes me feel weird.  When I see Colt with children who do not have any developmental/motor/speech delays, I realize just how much he needs this therapy.  Then when I see him at the clinic with children who need it so much worse than he does, I feel kind of silly for being there.  He's behind, yes, but not nearly as severely as some of the children there.  That feeling, combined with the fact that we are making absolutely no progress whatsoever, makes me want to give up.  I'm really missing Jaime (yes, Jaime, we miss you!) and I am not sold on the kind of therapy they are doing now.  You may recall that it was mentioned that Colt was having some eating issues.  It's really not much, but he doesn't chew the right way.  That "sounds" silly typed out, doesn't it?  It does to me.  Anyway, for some reason, I feel like our new therapist is hung up on the way Colt eats.  We have one hour of therapy a week and the past two weeks, we have spent 40-45 minutes each session watching Colt eat. I love the kid, but watching him eat isn't all that entertaining.  He hasn't said a single word yet, no new sounds, and no new signs aside from what we've taught him at home.  There is almost no speech therapy at all.  I am VERY discouraged.  I don't know why we are so hung up on the way Colt eats.  The kid eats brussel sprouts, broccoli, green beans, zucchini, and okra for crying out loud.  He went through a phase where he would choke and throw up a lot, but they taught us how to "talk him out of it" and we don't have that problem anymore.  Now we have that problem with medicine!  :/  Ha!  So, there.  I said it.  I am frustrated.  Our case manager is coming to our house on Monday to check-in and see how things are going, so I guess I'll get to talk to her about it then. 

As I posted yesterday, I took Colt back to the doctor and he has bronchitis.  They gave us Zithromax and told us to give him 1 teaspoon yesterday and 1/2 a teaspoon for the following 4 days.  Well, we did as we were told and Colt promptly puked his guts up.  This seems to be the cool thing to do for him lately.  I AM NOT AMUSED.  Anyway, the problem is that the pharmacy only gives you the exact amount you will need.  There is no room for error (or puking).  I am wondering if that is why Colt has bronchitis.  When he had croup, he threw up his first day's dose of steroids, which meant he only got 2 full doses instead of 3.  Maybe that's why it never really went away and turned into bronchitis?  Just a thought.  Like I said yesterday, we go back Monday to make sure his lungs are clear enough to be put to sleep.  I am so afraid we're going to have to put this MRI off, but maybe not.  We shall see! 

I swear, some days I think we could have our own TV show.  There is never a dull moment.  Maybe that's a blessing in disguise.  I will keep looking for the blessing to show itself.  ;)

Not even phased by being at the doctor's office anymore.  Also, he's looking very grown up.

Wednesday, February 13, 2013

Tacking on another one...

We went back to the doctor today after our speech therapist said Colt needed a chest x-ray. We didn't get a chest x-ray, but we didn't need one. Dr. Friddell could hear the bronchitis in his chest. He also has a "borderline" sinus infection. He gave him some Zithromax and told us we had to come back Monday to make sure his chest is clear enough for anesthesia on Tuesday.

I have to admit, I am tired of going to the doctor, I can only imagine how Colt feels. I hope he's not nearly as frustrated or discouraged as I am feeling today.

Tuesday, February 12, 2013

Update and a 'Thank You'

My last post was about our doctor visit which ended with Colt's pediatrician saying that Colt had asthma.  He prescribed us some medicines, which I picked up at Walgreens Thursday night for a big fat $115 after insurance.  With the two office visit co-pays we got last week too, we ended up spending over $200 in one week for co-pays alone.  This is getting very expensive very quickly.  Anyway, that night (after a big dinner at Dad and Judy's, mind you) Colt got his first dose of Singulair.  It is a chewable tablet that tastes pretty good, but long story short, Colt spit out the tablet, then puked all over his toy car that he was riding on, all over the floor, all over himself, and all over the wall.  You know that to get puke on a wall from a good foot and a half or two away, you have to have some pressure behind it.  Ew.  AND THEN, he did it again last night.  Again, all over the car, himself and the floor.  Not the wall this time, thank goodness.  Sigh.  I wouldn't get mad if he was legitimately sick or something, but he has total control over his puking.  I'm not going to lie, it makes me furious.  No matter what he does, he's gets his medicine one way or another.  Little booger.

Also, the inhaler with the mask is a major fight each time.  He screams when you come at him with that mask like you are beating him.  I can only imagine what our neighbors think.  After all of this, Ryan and I are not convinced that Colt has asthma.  I believed it at first, thinking maybe he did due to his family history, but after 5 days of the medicine and no change, I am not sure.  His coughing is not wheezy, but congested.  We're going to keep trying the medicine, but I am wondering how long we it should be before it begins to help.  Poor kid is coughing his guts up. 

Other than that, we had a good weekend.  Saturday night, my dear friend Lindsey and I went to ArtsyU.  It's a painting class type place.  I had been before and LOVED it, so I was excited to go back.  This time we painted "Venetian Windows" and both of our paintings turned out great.  Now I just have to find a place to hang it!  :)  If you haven't been, go!  They are often featured on Groupon, which I highly recommend because it is half price that way!  I can't wait to go back again!

This is my painting!

Friends since the first grade!

Sunday was full of church and eating with family and friends, as it should be. :)  Yesterday, Colt and I stayed home all day.  It was a clean the house/watch movies/do laundry kind of day.  It was also the day that Colt climbed out of his crib for the first time.  He has been really close a time or two, but he's never actually gone all the way.  Granted, I was in the room and was watching him from the floor and he was coming TO me.  I realize most 2 year olds are probably already out of their cribs, so I guess it's almost time to change him to a toddler bed.  I can just hear the thump he's going to make when he falls out of his crib if we don't change soon.  ;) 

Sneaky grin!
That's what is going on in the Doolittle house this week.  Nothing major this week, just getting ready for the MRI a week from today.  We have to be there at 6:30 and we'll be the first one they do I was told when they called yesterday.  The lady told me it will take about 2 1/2 hours total, so we should be out well before lunch.  It will be done at Erlanger, not at Children's, but I am not sure why.  Maybe we'll hear something about the results next week.  I hope so! 
I just want to take a second and say thanks to all who have been following along with Colt's journey.  I know there are a few of you, my last 2 blog posts were 3 "reads" shy of 200 each!  Thank you all, thank you for your prayers and support and kind words of encouragement.  I have had 3 different people approach me recently at church and tell me that they love to keep Colt in the nursery because he is so sweet and loving.  He has been through a lot already by age 2 and he is turning into such a wonderful, smart, sensitive, snuggly little boy.  I accredit that to the many people who love him, teach him, support him (and his parents!), and pray for him.  Thank you, thank you, thank you all.  :)  

Thursday, February 7, 2013

Trying to find humor in it all.

There seems to be so much going on with Colt lately that it is almost becoming comical.  If you remember, a couple of weeks ago, Colt made his first ER visit because of the croup.  He has had a terrible cough ever since, almost as if it never really went away though the cough did sound different.  Less "barking."  Anyway, because he has the MRI coming up, they will not put him to sleep if he has had a cough within a few days of the MRI.  We knew we had to get rid of it soon, so I called his pediatrician to see what he thought.  He heard Colt over the phone, said the croup didn't last that long, so it was either a sinus infection or something like that.  This morning, we had an appointment with Dr. Smith and we got our answer.  Colt has asthma.  This is not surprising, seeing as he is my son, but still.  Apparently, sometimes when a child has had a "coughing virus" like the croup or RSV, it can turn into asthma.  This is what happened with Colt.  Of course.  I just have to laugh, at this point.  I've had it my entire life, so at least I know how to handle it.  Dr. Smith said we'd try to get through it without a nebulizer, so he put him on Singulair (my wonder drug!) and an inhaler (the very same one that I use.)  He said Singulair works really well for some and not at all for others, and since it works so well for me, it will likely do the same for Colt.  We'll use them both every day until the cough goes away, then continue the Singulair for another month.  At that point, we'll take him off of it and see what happens.  Maybe he won't need it again for a while.  So, there we are now. 

It can always be worse, it can always be worse, it can always be worse.

God, that is not a challenge.  ;) 

Tuesday, February 5, 2013

Neurologist Visit Update

Yesterday was Colt's first visit to the neurologist, Dr. Miller.  I'll try not to get into how I felt about the guy at first, but I left happier than when I first got there.  Long story short, he didn't have a good "bedside manner."  He went over Colt's medical history and his developmental history, watched him walk, and made him lay on his belly on the floor then get up.  So much happened that I am feeling a bit scatterbrained, so I hope my writing will make sense. 

Dr. Miller definitely thinks there is a problem neurologically and that he isn't "just stubborn" like people keep saying.  They judge that by how many "red flags" someone has.  For example, Colt getting nystagmus and strabismus 6 months after he was born rather than being born with it is a big red flag.  If you remember, we had an MRI done to check for brain tumors at Vanderbilt because of this being a red flag.  The fact that he was such a late sitter/crawler/stander/walker was another red flag.  The surgeries not working for him when they normally work for others is another flag.  Our opthalmalogist told us then it was a brain issue, not an eye muscle issue, you may recall.  Now with the speech delay, there is another flag.  The last one is the size of Colt's head, BIG red flag.  We've always kind of joked about it, but turns out, it was very concerning to the neurologist.  He just kept bringing it up.  So there is our group of flags.  When there is only one or two flags, they usually don't do anything about it, but since he has so many, they are sure there's something causing it. 

This leads us to the hard part.  Figuring it out.  They asked us lots of questions, me specifically, about anything that could have happened when he was born or while I was pregnant.  I told him every detail of my pregnancy when asked and he got hung up on the fact that I had polyhydramnios.  This means that I had too much amniotic fluid when I was pregnant with Colt.  I saw a high-risk doctor to monitor it and monitor Colt because he (and his head!) were measuring so big.  They thought maybe Colt was having a kidney problem which was causing the polyhydramnios and they expected it to show when he was born, but that wasn't it.  Dr. Miller acted as though the polyhydramnios was related to Colt's problems, but would never come out and say it without knowing for sure. 

Dr. Miller said this next part is like solving a mystery.  The problem could be a number of things.  It could be that Colt's brain/nerves had not myelinated quickly enough.  It could be some kind of thyroid/liver problem (that seems far-fetched to me, but I'm no doctor.)  It could be some type of syndrome that Ryan or myself are carriers of without knowing.  It could be anything. 

Yesterday, the doctor sent Colt to the lab to have blood drawn.  Not the finger-prick kind, this was a big fat vial of Colt blood and it made me hurt to see it.  They will test for muscle enzymes, liver enzymes, thyroid problems, and a few other things.  They also scheduled an MRI for two weeks from today, February 19th.  I hate that because they'll have to put him to sleep again.  The heavy, deep sleep, tube down the throat kind of sleep, like he had at Vanderbilt.  They also referred us to a geneticist to have me, Ryan, and Colt all tested.  This could help us find something that we are carriers of but are unaware, but it could also help us to know if we'll pass these problems on to the next child.  This could be very interesting or very scary!  Ha.  ;) 

So, this is where we are now.  More testing, no answers, lots of waiting, but at least there is a direction.  I don't know if I feel better knowing that Colt isn't just being stubborn and there is something going on, or if I wish he was just being stubborn.  I have thought for a while that he wasn't just stubborn because of how frustrated he gets sometimes when he tries to communicate.  When people told me "Oh, don't worry.  He'll talk when he's ready." I wanted to scream because I knew it was more than that.  I know they were just trying to be helpful, but it frustrated me too.  Now I KNOW it is more and I don't know how I feel.  I suppose that's normal though.  If you'll just continue to keep us in your prayers, particularly on the 19th as Colt is put to sleep yet again, we would appreciate it so much. 

No matter what happens, we have a beautiful, happy, smart, funny, and loving little boy. 

Colt loves his cousin, Tanner.
Mommy and Colt dance party

Colt loves his cousin, Tucker, too!
Story time with Daddy. 
He hated the fingerpaints. 
Cutie!!  He loves glasses!