The House of Doo

The House of Doo

Tuesday, December 24, 2013

Again...

 I can't think of a title. :/

I just wanted to write a quick update on my stepdad.  He is still hanging on but has hardly any quality of life left at all.  It is so sad to see him lying in that bed.  He is so skinny and looks about 90 years old and is only in his 50s.  He can no longer stand or talk.  I talked to Mom this morning and she said his breathing is starting to get labored.  It will not be much longer.  He doesn't really "see" you anymore, as his eyes aren't focusing.  I hate this part.  We watched this with my precious Nana and it was horrible.  At this point, you know what is going to happen as it is inevitable and honestly, you just want it to happen soon and not drag on because he's suffering.  My mom feels this way and is at peace with his death, however, she is going to be (is already, really) heartbroken.  If you know my mom, you know it took a VERY long time and a lot of mistakes to get to the point of finding Allen and it seems so unfair for him to be taken from her.  I also want to be very honest about her because I don't feel that it is something of which to be ashamed.  She is bipolar - clinically diagnosed, not just "moody," among other things. So many people throw the term "bipolar" around very loosely.  Anyway.  She is bipolar and takes a lot of medication and care to try to keep it under control.  Lots of things could easily turn it into a situation where she really needs help and losing a spouse could totally do it.  I know she takes great care to try not to sleep during the day even if she couldn't sleep at night (this has happened lots lately) and if she does get her days and nights mixed a little, it can throw the bipolar disorder into a mess.  I just want you guys to know exactly what to pray for when it comes to her.  She needs prayer that she can get the rest she needs and be able to grieve without it turning into something that could - in a really bad case - require hospitalization for her.  Allen was her support and her sanity, in many situations, and it is going to be very hard for her to handle this.  I also ask that you pray for her to grieve in a "healthy" manner.  God knows what I mean.  As for Allen, please pray that he passes peacefully and soon, so he does not suffer long.  He has been in a lot of pain and no one should have to go through that.

As for me, I ask that you pray that I am strong enough for my mom.  Ryan and I (and Colt!) love Allen so much and we will desperately miss him, but we have to be able to be strong enough for mom.

Thanks for your prayers.

Tuesday, December 3, 2013

Praises.

I just thought I would update on the way things have been going lately.  Colt is in his fourth week of preschool at Siskin.  I absolutely, wholeheartedly believe that this place is the answer to our prayers.  In the past month, he has just exploded with progress!  Every day it is something new.  Something BIG!  New words, new phrases, everything!  He has even started saying things in response to us and he is HILARIOUS.  On Thanksgiving Day, someone asked him a question (I don't know what it was now) and his response was "No comment!"  Ha.  This weekend he answered me a few times with "If you say so."   Yesterday (TMI alert!) he had a bit of a raw hiney, kind of diaper-rashy and he said "Hurts so bad...butt doctor!"  Hahahaha.  Sunday morning, I went to get him ready for church and I had on a white button-up shirt.  He pointed at my shirt and said "Doctor's outfit."  Umm...okay.  :)  I love, love, LOVE this.

Another big thing that has just started in the past few days... he is PRETENDING!  I know that seems silly.  We put our Christmas tree up on "Black Friday" and he found a bungee cord that was around our Christmas tree box.  He hung it around his neck and began holding one side by his ear and the other on our chests to "check for heartbeats."  :)  He then checked our ears for the "ear flu."  I have no idea, but I LOVE IT.  He loves all things doctor.  And football.  He has been running plays, yelling "First down!" and playing "touchdown" where he tucks the football up under his arm and tackles Daddy.  He loved going to games at our old high school this fall and it was the most still I have ever seen him.  Now, he watches entire games on TV and truly watches what is happening, like he's studying it.

A couple of nights ago, he spent about 30 minutes playing with cars and driving them all over, pretending to park them on his road map rug and setting up little orange cones and street signs.  We just watched him in awe.  He is, all of a sudden, a little boy with an imagination. 

Yesterday, driving to school, he started to sing.  That is the first time I have ever heard him sing.  I tell no lies when I say it brought me to tears.  Of all songs it was that STUPID "baby you a song, you make me want to roll my windows down and cruise" song.  I HATE THAT SONG.  The grammar is horrendous.  Anyway, yesterday, it was the most beautiful song I had ever heard coming from that little mouth. 

His behavior has made a 180.  We were REALLY struggling and almost instantly after he started school, it changed.  I don't know if it is watching the other children or that he's getting his energy out or what but it's amazing.  Ryan picked Colt up from school yesterday and he asked the teachers if he was good.  She said "He's always good!"  What a change!  He is truly a delight.  Truly.  I just cannot get over it.  :)

I am feeling a little pressure to change the days he is in school.  He goes Monday, Wednesday, and Friday and I am off on Mondays and Wednesdays.  I miss him while he's at school, no doubt.  At the same time, he gets to go three days rather than two, like he would if we changed to Tuesday/Thursday.  I don't know what to do.  For now though, he's loving it and so are we.

He has such a GIGANTIC personality and I am so excited that others will soon be able to see it like we have seen it for so long.  :)

Thank you, God, for this beautiful blessing. 

(My sweet fried Hillary at HMX Photography for taking this beautiful photo.)

Tuesday, November 12, 2013

Soapbox Post!

Life has been really hard lately.  Not only for me, but for many of my family and friends - close or in Facebookland.  Some of the hardships are shared between us and some are individual battles.  Some are current and some are ghosts from the past.  Some have a mixture of both.  Yikes.  There is a lot of HURT going on right now.  Everywhere you look, someone is hurting.  You hear that you should always look around because someone else always has it worse off.  No doubt, someone does.  However, this doesn't make you hurt any less usually.  To me, sometimes the most helpful thing is to have someone that I can vent to (I know that's grammatically incorrect, but it sounds pretentious when I reword it) and to have someone that I know will have my back or pray for me, sometimes without being asked to do so.  A friend recently shared a link to a blog about having "a net."  You can read it here.  Basically, a net is a friend/family member that can "catch" you when you are falling.  It's important that we have this person.  It's so easy to sit back and say "Praying for ya!" when we see that someone is struggling, but do you REALLY say a prayer?  Most of us do not, I would say.  When I noticed the aforementioned friend was having a hard time, I thought to myself "You know, I really wish I could help, but I can't..."  You know what?  I can.  I can take a few minutes to pray for that person and send them an encouraging word.  So can you.  It isn't going to solve anyone's problems or make everything okay, but it can uplift them.  It can give them just a bit more strength to push a little harder.  It can help them know they aren't fighting alone, that someone has their back. 

I have been thinking about this for a while but that blog really hammered it home.  I was thinking about how hard it is to be a mother, sometimes.  Or maybe it's just a woman thing.  We give and give and give and give until there is so little left of us and it's so easy to get mad, bitter, or broken down.  We get very little thanks or appreciation in return because "it's our job" to clean the house, do the laundry, cook dinner, whatever.  This is not directed at my husband, I promise, but it is true.  I think if we think about it, most of us women/wives/mothers feel this way, at least occasionally.  We can't expect men to suddenly change (though I wish we could sometimes!) because I keep hearing that they are "just wired that way."  I'm not going to get into that crap.  This is more about how I think we should stick together as women/wives/mothers and help uplift each other. 

Everything about our ridiculous society says to compare yourself to someone else.  Do better.  Go bigger.  Be skinnier.  Make a better Pinterest project.  Make your own soap.  Cloth diaper and nurse until the children are 7.  Come on.  Most days I haven't even showered and my house is a disaster, but my child is alive and made it to his therapy sessions on time.  I consider that a win!  And I only have ONE!!   My son is FULL-THROTTLE at all times, so you better believe when he naps, I lie down too.  I usually read or nap.  You know what?  That's okay.  I am so tired of feeling guilty about that.  My son is EXHAUSTING, I am sure your kids are too.  Why do we learn to feel bad about that?  If I didn't rest when he did, I would be a stark-raving lunatic by the time my husband got home.  Heck, sometimes I am even with a nap.  :) 

We have got to stop this crazy "I am not good enough" crap.  STOP IT.  You ARE good enough.  Your children love you, even when you haven't showered.  Now, stop beating up other people too.  Don't even think to yourself that you would do something differently.  You don't know that until you have to deal with it.  Be supportive of people.  Tell them you appreciate them. Tell them "Hey, you've got this.  You can do this!"  Tell them you are proud of them, thankful for them, love them.  Be a blessing.  It will help YOU get through your own hard times because, in return, someone will bless you.  (See, it's not being totally selfless because you get something too!) 

Thursday, October 31, 2013

Prayer Request.

I meant to add this to my blog from Tuesday, but I forgot.  :/

I wanted to update on my stepdad, Allen. 

He has finished his radiation treatments for now and is waiting for a scan that will be done next week, November 6.  He has been very sick.  He has been falling a lot and the doctors say it is because when he stands, his blood pressure is dropping drastically.  About a week and a half ago, Allen fell in the bathroom at their house.  He fell between the wall and the toilet and Mom couldn't get him up.  She had to call 911.  :(  They took him to the emergency room in the ambulance and gave him some fluids at the hospital.  When he fell, he got some kind of nerve damage and now has no feeling in his right arm.  He can't use it or feel it at all.  They don't know if it is permanent or just temporary, but so far, the feeling has not returned. 

This has been very hard for him, because as you can imagine, he has to depend on other people to help him.  He is right-handed, so this was a big set-back.  He has a hard time feeding himself and even going to the restroom seeing as it's hard to dress and undress with one hand. 

We saw Allen recently and I have to admit, he looks bad.  He has lost a lot of weight and is obviously exhausted.  Please keep him in your prayers.  He needs prayers for his health, but also for his spirit.  I can imagine cancer would get you down and on top of that, he has the nerve injury that is requiring him to be very dependent.  Thank you in advance. 


Tuesday, October 29, 2013

Life Right Now.

It has been about 3 1/2 weeks since my last update and a lot has happened.  It always seems that way.  Never a dull moment around here, that's for sure. 

First of all, yesterday was Colt's third birthday!  On one hand, I am stunned that it has been three years since he was born.  On the other, BOY, have we been through a lot in those three years.  Wow.  Colt is a stubborn, determined, brilliant, and loving little boy.  We are so very blessed to have him in our lives.  On Saturday, we had a big party for him at my dad and Judy's house.  We had a hayride and fire, with chili, hot dogs, and s'mores.  I think everyone had a good time.  I know we did. 

Yesterday, Ryan took the day off and we took Colt for a big day out.  We started with his yearly check-up.  He weighed in at a whopping 43 lbs and was 40 1/2 inches tall.  He used to be a chunky little man, but now, he's thinned up a lot as he's gotten taller.  He is still solid as a rock.  I love that...until I have to carry him up the stairs.  ;)  Anyway, after the doctor, we went to the Tennessee Aquarium and out for pizza at Mellow Mushroom.  We went home for a nap, then back out for dinner at Shogun.  Colt loves that place.  He loves the salad with ginger dressing and the hibachi vegetables.  After dinner, we went to Petco and bought Colt his very own fish to have in his room at home.  He named them Gil and Molly, after his new favorite show Bubble Guppies.  We had a wonderful day together.  :)

Okay, now for some of the updates.  Colt aged out of our Early Intervention program - Babies Can't Wait.  The program only services children ages three and under.  He should have, without a doubt, qualified for the Special Education Pre-K that I have mentioned before.  HOWEVER, he didn't.  It was VERY, VERY upsetting because he should have qualified.  It left me feeling helpless and I shed many tears over that situation.  Basically, they told me that his cognitive ability was too high.  I know that is a huge blessing, really I do.  I was depending on that for help though, and when it was denied, I was devastated.  They did give Colt an IEP for speech therapy through the school system, but nothing more.  He will begin speech therapy at Cherokee Ridge Elementary tomorrow and will go twice a week from now on.  They suggested we continue Physical Therapy through a private therapist on our own, with our own money.  Gee, thanks.  Let me describe this meeting for you...  There was a big round table with me and five others - two speech therapists, an occupational therapist, a special education teacher, and a school psychologist.  I had to sit there for an hour and twenty minutes listening to them analyze every single part of my son - what he couldn't do, wouldn't do, shouldn't do, and the few things he did well.  It was one of the hardest things I have ever had to endure.  I wanted to jump up and defend him, but obviously, I can't do that.  I sat through all of that before they told me he didn't qualify.  Ugh. 

One big thing they did talk to me about is the fact that they all unanimously agreed that Colt has Sensory Processing Disorder.  Many times, it can be misdiagnosed as ADHD or it can occur along with ADHD.  Our old speech therapist, Ashley, mentioned that she thought he may be ADHD before, however, he was too young to really say.  When I came back and did a little research, I honestly think they are right.  He definitely doesn't fit all of the different types, but I do feel that he is very "Sensory-Seeking."  I listed some below so you kind of know what I mean.

1. Sensory Seeking Behaviors:

_X_ seeks out jumping, bumping, and crashing activities

__ stomps feet when walking

_X_ kicks his/her feet on floor or chair while sitting at desk/table

__ bites or sucks on fingers and/or frequently cracks his/her knuckles

_X_ loves to be tightly wrapped in many or weighted blankets, especially at bedtime

__ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible

_X_ loves/seeks out "squishing" activities

_X_ enjoys bear hugs

_X_ excessive banging on/with toys and objects

_X_ loves "roughhousing" and tackling/wrestling games

_X_ frequently falls on floor intentionally

__ would jump on a trampoline for hours on end

__ grinds his/her teeth throughout the day

_X_ loves pushing/pulling/dragging objects

_X_ loves jumping off furniture or from high places

_X_ frequently hits, bumps or pushes other children  (This is what he got in trouble for at school!)

_X_ chews on pens, straws, shirt sleeves etc.  (shirt collar!)

_X_high levels of energy

_X_ dumping toy bins rummaging through them aimlessly

_X_ loves loud noises, TV or music volume, crowds and places with lots of action (Football games!)

I definitely think we are heading in the right direction here, but I am afraid to pursue a diagnosis.  I am not ready for a label at this age, but I do want to try to help him before it gets bad, if this is indeed what's going on.  I think, without a doubt, it is more than just a "typical boy, he'll grow out of it" thing.  Maybe we can just look into things we can try to do at home to help, so if anyone has any suggestions, I am all ears.

Anyway, all of this left us with no plan for preschool or places for social interaction, aside from your usual playground/playdate type thing.  A friend of my sister, Amie, suggested we look into Siskin Children's Institute.  It is a really amazing place.  There is almost always a waiting list, but this time, there is an opening in Colt's age class.  We toured it last week and loved everything about it.  It has happened so easily and so quickly that we are wondering if this isn't where he's supposed to be anyway.  We are pursuing this hard and hope to be able to start him there in the next week or two.  I couldn't be happier.

Also, Colt has had yet another double ear infection/sinus infection.  He is on antibiotics for the third time in 6 weeks.  We saw his ENT again recently.  He decided to do a second set of tubes and to take his adenoids out.  That will be done next week, November 6.  I feel like we have done nothing but go to different doctors or therapists this month.  This is my calendar for the month:
I am tired of it, I know that Colt must be too.  Hopefully things will settle down soon.  I'll leave you with a few pictures from his birthday party/big day out. :)

 Colt's new friends - Gil and Molly.
 At the Butterfly Garden.
 Birthday boy!

 Precious.
 Colt driving around his lady friends. ;)
 Happy birthday, Colt!!


Friday, October 4, 2013

Answers, Behavior, and Frustrations.

Well, it has been an eventful couple of days.

First of all, we got the call from the geneticist this afternoon. Colt's Soto's Syndrome test was negative. We are not going to test anymore at this time. We don't want him to be a lab experiment. He has been through too much in his short life. He deserves a break.

Yesterday, Colt had a TERRIBLE day at his Mother's Day Out program and was sent home early. He went to his Mimi's house and was a bit of a monster there too. I was pretty upset about it. Not at his school, just the fact that he had acted that way. We have had lots of problems and bad moments, but yesterday was awful.

When he got up this morning, he had LOTS of green snot (gross, sorry) and the beginnings of That Cough that always turns into bronchitis. I made him a doctor's appointment for today. He has his second double ear infection/sinus infection in less than a month. While there, I had a wonderful conversation with Dr. Friddell. I asked him about Colt's recent behavior. *Cilla, this is for you too!* He said that children like Colt, that have these setbacks and delays often have a harder time than "normal" (what is that anyway?) kids. He assured me that his behavior is stemming from frustration, rather than a behavioral problem. He said Colt can absolutely tell that he is different and sees the other children being able to ask for what they want and he can't do that, which causes frustration. He then acts out, gets loud, gets mean, whatever. Dr. Friddell explained it this way: Kids like Colt that have delays, particularly communication delays, can behave one of two ways. They can reach out, wanting to be noticed and understood by getting out of hand a bit, or they can withdraw into themselves and almost shut down. We want the first one. His stubbornness is beneficial here, though it is difficult to know how to handle it. Dr. Friddell assured me that he would catch up and get over this, but until then, we absolutely continue to punish this unruly behavior letting him know it is okay to be frustrated, but it cannot be manifested in that manner.

So. I feel loads better in some ways and totally beat down in others, knowing that Colt is frustrated because he understands he is different. I hope we can learn how to show him that being different is a blessing sometimes. I am absolutely thankful that Colt is stubborn, determined, and acts out instead of giving up and shutting down.

Please God, let my boy keep those qualities for the rest of his precious life.

Please.

Tuesday, September 24, 2013

These days...

It has been a couple of weeks since I last updated.  Not a whole lot has changed in our lives, however.  I suppose that's a good thing.  Colt is talking up a storm.  Every day it seems like he repeats something we say that we've never heard him try before.  Granted, nothing he says is very clear, but I am thrilled that he is trying.  I can USUALLY figure it out.  He is even putting some words together!  It's almost like he knew how to do it in his head, he just couldn't get it out through his mouth.  Now that he's starting to get it out, he is chaining the words together easily.  I love it!  He still calls himself "Gut."  Last night, he pointed to Ryan and said "Gut's Daddy."  Then he pointed to me and said "Gut's Mommy" and smiled.  He's so proud of himself. :)  He still gets some consonants mixed up, like he says "daggy" instead of "daddy" but he's pretty darn close on most things.  :)  He's really torn up about the Arby's in Fort O closing.  That was his favorite place to eat!  He has been saying "Ahh-by's guzzed!"  (Arby's closed!)  He says it at least 17 times a day.  That's okay, we're thrilled.

He had his preschool evaluation a week and a half ago.  I have no doubt that he will qualify and will be starting right at his third birthday.  I am excited and terrified at the same time.  We have a couple of decisions to make as to where he goes, so I pray that we choose the right place.

This Friday, we go back to Colt's ophthalmologist, Dr. Peterson.  I always enjoy seeing him, especially if they don't dilate Colt's eyes.  That is always a battle.  We have been noticing Colt doing something kind of strange with his eyes and I am anxious to talk this over with the doctor.  When Colt was younger and his Nystagmus was not as controlled as it is now, he used what is called a "null point."  The null point is a head/eye position in which the Nystagmus slows or stops. Since Nystagmus causes blurred vision, it is good to have a null point, because the vision is better in that head position.  Before his surgeries, Colt's null point was to the left. You can see he is using it in these pictures:
 It is most noticeable in these two pictures, where I am straight ahead, yet he turns his head to look at me.


Anyway, all of a sudden, it's like he's using his null point again, but if he is, it has moved.  We keep catching him with his head down like he's looking at the ground, then turning his eyes up, as if looking over glasses.  He mostly does it when trying to see something close up, or more clearly.  It may be nothing, but even the ladies at his preschool testing mentioned it.  So, we shall see.

Still no word from the geneticist.  We are about to accept that Colt is just different and doesn't really fit into any one category.  He is unbelievably smart, we do know that.  I imagine all parents feel that way, but he has a memory that surprises people daily.  It's bizarre, really!  If you do something one time, Colt will NEVER, EVER forget it.  I need to remember that.  I will never get away with anything with this one, I can already tell.  ;)

So, that's where we are these days.

 Precious monster.  :)

Tuesday, September 10, 2013

I Do It For Colt.



Let me just vent for a few minutes, okay?

I’ll start off telling you about my work schedule.  I work on Tuesdays and Thursdays all day.  On Fridays, I work until about 1:00 without taking a lunch, so I can eat lunch alone and run the errands I need to run without a 43 lb. two year old tagging along making it difficult.  I do this for maybe an hour, two at the most before I go pick him up from his Mimi’s house.  

Now.  My days off.  Mondays, we have Speech Therapy.  This Monday (and all too often, it seems!) we also went to the pediatrician’s office.   Colt has a double ear infection (sixth double ear infection this year), a sinus infection (fourth this year), the beginnings of bronchitis (fourth this year, twice requiring two rounds of antibiotics), and also something viral causing ulcers in his throat and a 103.6 degree fever since Saturday.  On Wednesdays, we have Physical Therapy and usually something fun for Colt as a reward.  Last week it was the Tennessee Aquarium.  The week before, it was Waffle House (don’t judge me) and the playground.  Fridays, as I mentioned, I get maybe two hours to myself.  THIS FRIDAY, I take Colt to the Walker County BOE place to have him tested for Special Ed Preschool.  Saturday, my husband works all day and usually into the evening hours, so I have Colt to myself AGAIN. This is fine, don’t get me wrong, but it is HARD.  He requires A LOT of attention and help.  Sunday, we go to Sunday School then church, go to lunch, home for Colt’s nap, then back to church.  Next week, I go to the doctor, the week after, Colt goes back to his eye doctor to check and make sure the three surgeries he had last year are still doing their job.  Sometime in there, we are supposed to hear from Colt’s geneticist to hear the results of his second round of genetic testing.  Also in there, we go back to the ENT, even though we just went in June, to see if they are going to do tubes again, since Colt has had 3 double ear infections and a busted ear drum since our last visit in June.  

PLEASE TELL ME WHERE IN THERE I FIND TIME TO LET MY PERSONAL LIFE INTERFERE WITH MY WORK.  

People are really, REALLY clueless.  I do not feel guilty in the least for those two (at the most!) hours I get to myself, even if it is to walk aimlessly through Target with a Starbucks latte.  I would give anything for a massage or manicure/pedicure or to be able to go shopping and not feel guilty because at home on the kitchen counter are over $4,000 worth of medical bills that need to be paid. 

Please don’t take this as a complaint, or a cry for attention, or an attempt to make people feel sorry for me.  It is not that because to be honest, I would not change it for a second.  Take it as a reality check for those of you who think that I hardly do anything with my life because I only work 2 ½ days a week.  

 I do it for this boy.  I do it for Colt.

Thursday, August 29, 2013

Day 1 of PT

Yesterday was Colt's first day of physical therapy.  It was at 8 am and I was pretty convinced it was going to be a disaster.  Some days, Colt wakes up in an absolutely brilliant mood.  Others, it is the total opposite.  I suppose that is anyone, but anyway, I was just hoping it was a good mood day.  Luckily, it was.  Jeannie is the physical therapist, and she said he did great for the first 30 minutes.  The second half, he started to get a bit rambunctious, but hey, he's a two year old boy.  Their attention span is only so long.  About halfway through the session, Jeannie came out and got a tiny little step-stool out of the bathroom and took it in the room with them.  They were working on stepping up without holding anyone's hand.  They have steps, but Colt couldn't use those, so she took in a smaller one.  The smaller one is only about 3-4" tall.  After a while, she said he stepped up on the small step without holding her hand!  It sounds silly to you, I am sure, but Colt has never been able to do that!  He still would not step off without holding on to something, but I am positive they will get there soon.  Eventually, he'll be able to do the steps without sitting down and sliding down on his butt, I am sure of it.  I also excited about them teaching him to do things like jump, pull up and down his own pants, and helping him work on his balance, so he can run and jump and play like the other kids.  I mentioned before, he tests about 18 months behind so this is much needed.  Oh, how I wish we had been able to do this sooner.  :) 

After therapy, we had breakfast at the high class establishment known as Waffle House.  Colt ate an entire waffle and a side of bacon and then wanted more!  He's a fan, just like his mommy.  ;)  We also got in some quality time at the playground, right before I twisted my ankle so bad I was in tears.  Today it is nice and blue.  Bah. 

Tomorrow has been one month since we saw the geneticist.  I am oh-so-anxiously awaiting that call.  In the next week or so, we should also be hearing from the school system.  They will be arranging to test Colt and see if he "qualifies" for preschool.  No doubt he will due to the severe speech delay.  He is steadily catching up, which is wonderful, but is still behind.  Eventually, when he catches up (assuming there is nothing else holding him back) he can "test out" or graduate from the special ed preschool.  So, that is where we stand today.  Thanks for keeping up with our wild boy!

 My Waffle House buddy!
 All smiles at the playground.
My little Picasso loves to draw!

Tuesday, August 27, 2013

Life is a Rollercoaster.

I haven't posted much about my stepdad, Allen, lately.  He was going to Emory for his cancer treatment and wasn't very happy with his doctor there.  They had pretty much "written him off."  The doctor didn't seem to want to fight for Allen and I really think that's a darn shame.  This past Thursday, he had his first appointment at Cancer Treatment Centers of America in Atlanta.  He had appointments Thursday, Friday, and yesterday (Monday).  He had lots of tests and blood work and also a PET scan.  This is a scan that can see cancer pretty much anywhere in your body.  Yesterday, he went back to find out the results and his treatment plan.  I mentioned a while back that there was a spot on his lung.  They confirmed that this spot was indeed cancer.  However, the good news is that the spot is only on the outside and can be treated.  There are two other tumors, both already being treated at Emory.  These two are the difficult ones.  They are in the cavity left by the 90% of his pancreas that has already been removed.  They also are wrapped around other organs now, including his stomach, liver, intestines, and what is left of his pancreas. They decided to administer chemo through pill form and they will also do radiation.  At Emory, they refused to do radiation because they were afraid it would damage his organs too much.  At CTCA, they have a "state of the art" machine and they can "dial down" the radiation, so as not to damage the organs, or do very little damage.  That all sounds like really bad news, but really, there is good news.  Most pancreatic cancer does not respond to chemo, however, Allen's is responding well.  At Emory, his last blood test showed that his "cancer numbers" were VERY low, almost normal.  37 is normal, his was 44.  Well, he has been off chemo (because they were going to change the form of chemo he was getting) and in those couple of weeks, the cancer number went up to 120.  This is good news because the chemo is working.  Hopefully this time, adding in radiation may be just what he needs to jump start the cancer killing even more.  It may not ever work to the point of getting rid of it completely, they say, HOWEVER, I know God is still in the miracle business.  So, please, please, please keep Allen and mom in your prayers.  Also, tomorrow is his birthday and he will spend it getting fitted for the radiation machine.  :/

Tomorrow, Colt starts his physical therapy.  The ONLY spot they have open is at 8 a.m.  I don't foresee this going well.  ;)  I will let you know.  Ha!  He has gotten to be quite the chatterbox recently.  Granted, many times, he repeats the same word over and over but it still sounds lovely to me.  The most exciting new "word" for us is that Colt is trying to say his own name.  We have been trying to get him to say it for months!  His version of his name is "Gut."  BAHAHA.  Before when you would ask him his name, he would point at his cheek.  That is his way of saying "Colt," almost like his sign for himself.  He still points at his cheek, but now will say "Gut."  It is seriously adorable.  This morning, the first thing he did was stand on his stepstool, look at his face in the mirror, point at himself and say "GUT!" Ha.  I love it.  :) 

WARNING!  PARENTAL TMI TO FOLLOW.  ;) We've also been getting consistent #1 and #2 in the potty.  He is doing great!  The problem is that I can't get him to tell me BEFORE he needs to go #1.  We were using M&Ms as rewards and I saw somewhere to stop giving them every time they go, but to only give them when they TELL you they need to go.  That is my next plan of action though he doesn't seem to understand when I explain that to him. Does anyone have any other suggestions?  I don't think the sticker chart will work for Colt, he isn't quite "there" yet. 

Sunday was the 18th birthday of my awesome nephew, Tucker.  I cannot believe he is 18.  Today was the first day of his senior year of high school.  Wow!  The same day, our dear friend and "adopted son," Trey, turned 20.  Also that day, Ryan drove Trey back to college in Atlanta.  I will miss his smiling face around the house and pray that he has a good and successful second year of college at Georgia State. 

I mentioned in the last blog that we "leased to own" our house.  I have already regretted that decision and am sick about it.  However, I love that we are not having to pay that mortgage anymore.  I pray that it will get better because the first two weeks or so have already become a miserable nightmare.  If you want to know what I mean, just drive by and look at my house.  Oh my gosh. 

Life is a rollercoaster for sure.  A great big freakin' rollercoaster.  I will end this blog with some of the highs of said rollercoaster. 
 My boys, ready for church!
 Birthday buddies!
 Our family.
 Colt FINALLY acknowledges Claire!
My dear friend Maggie stopped by to see us, all the way from Indianapolis!

Tuesday, August 20, 2013

Answered Prayers.

We have had quite a few prayers answered recently that I am excited to share!

I have mentioned before that Colt is finally starting to talk!  He is saying (or at least attempting to say) so many words I have lost count!  One of his favorites is lawnmower.  Ha!  I mean, when this kid tries, he tries 150%!  He can say just about anyone's name.  He still will not say his own name or even try to say it.  Some of his new words include: outside, Arby's, gosh (not my favorite), pool, Roxie, shoes, dogs, more (probably my favorite, it is so cute!), please, cheese, doctor, eye doctor (specific!), and on and on.  I am so proud!!  His little voice is so cute!  He still signs a lot and sometimes signs and says a word at the same time.  I love that.  He has started to sign "thank you!" without being asked and at appropriate times.  This boy has manners.  ;)  Anyway, this is a HUGE answer to prayers!!!

Also, we've been praying to sell our house for months.  Well, we haven't exactly sold it, but we have accepted an offer to "lease to own."  It is NOT what I wanted to do at all, but I am super excited to not have to pay that mortgage anymore!  We have a two year agreement with this couple and hope it works out so that they can buy it.  If not, we got a big enough deposit that it will be okay if they don't.  ;)  If they buy it, they get the deposit back to put towards the down payment on the purchase, if they don't buy it, we get to keep it.  They are a retired couple from Michigan and seem to be excited to be here living in the house.  I know they will take good care of it.  Either way, with the bills we continue to get from all of Colt's medical testing, we are thrilled to not have to make that payment anymore. :)

Speaking of, we are 10 days shy of our one month mark with the geneticist.  I am hoping the results come back a bit early, but if not, we will continue to wait.  So, that's where we stand these days.  I hope this blog finds you happy and healthy.  Thank you for sending up prayers for us!  They work!!  :)

 Just a swingin'
 Friday night date with Mommy!
 Sunset from Pawpaw's farm.
Colt seems thrilled with our date. 

Tuesday, August 6, 2013

Positives.

I haven't posted a positive post in a while and wanted to catch you guys up on the new and exciting things that we are hearing from Colt. 

He still isn't saying words together yet, however, he is saying MANY new words!  Granted, they might not sound like much to anyone but us, but we are counting them as words!  Colt can say almost anyone in his family's name, especially the simpler ones.  He says mama and dada (and sometimes mommy and daddy!), mimi, moomoo, nana, gaga, Amie, Tucker, pawpaw, gigi, papa, lo-lo (Lauren), o-dee (Jody), ee-ahh (Leah), booboo (this is both Daniel and Tanner) and he says eee! for his aunt Chelsea and babysitter Chelsey.  He surprised us the other day and said "more!" without being prompted.  He says peepee (yay!), boo boo, baby, bottle, bubble, "oool!" for school, eat (surprise!), and please/cheese (they are very similar!).  He says oon for moon, bye!, and makes all kinds of animal noises.  I feel like there are more, but now that I am trying to think of them, I am blanking out.  He will say the alphabet with help, and I videotaped him this morning on the way to school.  He does his best talking in the car. ;)  Oh!  This morning, I was putting him in the car and he pointed and said "BIBLE!" plain as day.  He was right, my Bible was in the floorboard.  (don't judge me!)

His little voice is the most beautiful music I have ever heard. 

I mentioned a while back that we had an Occupational Therapy/Physical Therapy evaluation done.  Yesterday, I got his scores back.  He is 33 1/2 months old (specific, I know, but that is important here.)  For Occupational Therapy, he scored as a 27 month old should.  That is a little behind, but nothing terribly concerning. 

Now, Physical Therapy has two different sections - stationary age and locomotion age.  Stationary age is his ability to maintain his center of gravity/balance while stationary or not moving.  His locomotion age is the same, but while moving and doing things like climbing steps/walking/jumping and the like.  Now, for his stationary age, he scored 21 months.  that is about a year behind where he should be.  For his locomotion age, he scored 18 months.  He is over a year behind there.  So, obviously the problem is with his balance.  I think that totally makes sense seeing as for the first two years of his life, he couldn't see things the way they really were.  For many months, he had double vision even.  Cross your eyes and see how easy it is to walk up stairs.  Makes sense to me that he would be behind.  On top of that, he has chronic double ear infections which can also mess with your balance.  So.  That makes a lot of sense.  He has been prescribed Physical Therapy, but we must wait for the program to get a "Doctor's Orders" to make it official. 

Still no answers from the geneticist, but we are only a week out from the test and she said about a month.  I just wanted to share some of those things with you guys.  :)  I'll also share some pictures, you know I always do.  :) 










Tuesday, July 30, 2013

Geneticist Follow-up.

We went to the geneticist today to get the test results from our last visit.  The Fragile X test I mentioned was negative.  The micro-array analysis was basically a breakdown of Colt's genetic material.  It was mostly normal except for one part, where Colt has some extra genetic material.  I didn't really understand this, but there is one part where there are two strands and one of them was "diseased."  This isn't really that big of a deal, unless both parts are diseased.  It was kind of strange though because if both parts were diseased, it could cause respiratory disease in him.  We went to the pediatrician yesterday for this horrible cough that has been hanging around and he has bronchitis.  It kind of fit.  BUT, Dr. Stevens wasn't alarmed with that part.  So, we now have no answers.  Still 

Dr. Stevens said at the first visit she thought of something called "Sotos Syndrome."  She kind of mentally ruled it out though.  At the visit today, she told us she had been thinking about Colt yesterday and wanted to revisit the possibility of Sotos Syndrome.  It is basically an "overgrowth syndrome" where the child is much bigger than other kids his age, has developmental delays, vision problems, etc.  Colt fit many, however, he didn't have the facial features of one with Sotos.  This can happen sometimes, so today they drew blood to test for that.  We did a bad thing and Googled it, but for the most part, this seems to be the best scenario.  The one major scary thing with this one (and the doctor mentioned this) is that children with this syndrome are prone to cancerous tumors as children.  Bah.  So, now we can worry about that.  :/  We won't know the results for this test for at least a month because it is a little more in-depth, and the doctor will call us herself with the results. 

That is where we stand right now.  If this comes back negative, I think we are going to step back and let things go for a while.  See how he progresses and give ourselves a break.  I hate seeing Colt cry and not understand why we are holding him down AGAIN to let someone stab him with needles.  The older he gets, the more he understands and knows what is coming.  I can't handle it. 

Other than that, not much is going on.  Colt does have bronchitis again, for the third time this year.  He is on antibiotics to see how it responds.  If it responds, it is infectious bronchitis, if not, it is "reactive" bronchitis.  If it is this kind, he'll have to do long-term nebulizer treatments.  Bah.  Poor kid.  He hates the nebulizer.  It's worse than getting blood drawn! 

He is otherwise a very happy, beautiful child.  He is making improvements every day and we are so proud.  Please keep us (and our anxiety) in your prayers.  :)

 Bubble Pool!
 New haircut!
Beautiful boy.

Thursday, July 11, 2013

Geneticist Visit and More.

It has been a couple of weeks since I last posted.  Last time I posted, I was upset because we hadn't gotten a very satisfying answer from our neurologist on the comparison of Colt's two brain MRIs.  We finally got a call from him personally.  I am going to preface this with the fact that I am sure the man is a genius, but he is the weirdest human being I have ever encountered.  He is a TERRIBLE communicator.  When you do talk to him, you leave more confused than when you started.  This time, he did say that the two MRIs were indeed different.  The first one is perfectly normal.  The second one is different, though only slightly.  The first time he called to tell us that Colt's MRI showed brain damage, he rated the damage as a 3 on a 0-10 scale.  This time, he said that the more he looked at it, he wanted to change that from a 3 to a 1 or 2.  That is great!  I think.  It may change again the next time we see him, but hopefully not.  Unless it changes to a 0.  That would be acceptable.  ;) 

On Monday of this week, Colt's geneticist's office called.  We were not able to get in to see her until September, but I recently called and got us put on the cancellation list.  When they called on Monday, she had some cancellations this week!  We took the one that was open yesterday.  For the most part, we had a great experience at Dr. Stevens' office. They took us back pretty quickly and took us to a little room.  They did the usual doctor things, measuring Colt's height, weight, and head size.  In a few minutes, a genetic counselor came in the room and went over our medical history.  My entire pregnancy, Colt's birth, the time frame of all his major developmental milestones, and our family histories.  Shortly after, Dr. Stevens came in.  We were in there for quite a while, she analyzed him from head to toe, even noting something about how his toenails "spooned."  Detailed, for sure.  In the end, there are a few things that she decided to test him for.  Some chromosomal abnormalities.  We had to take him down to the dreaded lab.  We've been there a few times and Colt knew where he was immediately.  Usually when they take blood from Colt, he screams like crazy and we have to literally lay on top of him to be able to hold him still.  Ryan did lay down on him while I held his arm still, but he never even flinched.  They took three big vials of blood and he didn't whimper or shed a single tear.  Amazing.  I guess he is getting used to this, sad to say.  We didn't get any answers yesterday, but we go back in a little less than 3 weeks, on July 30th to find out the results of these blood tests. 

One thing the geneticist suggested was that Colt should be getting physical and occupational therapies, along with the speech. She thinks it would have helped him a lot.  It has been mentioned to us a few times at speech, but then dismissed.  So, I will be calling our case manager and talking to her about that.  The thing is that Colt can only have therapy through these programs until he's 3, so he'll only get it for a few months.  It takes a while to get it started, so I am not sure we would even get any before he turns 3.  I will ask though. 

I feel like we are so close to an answer and I am excited and terrified at the very same time.  I am excited to have an answer and a direction, but terrified of what that answer may hold for Colt's future. 

While we are in the waiting room at the geneticist's office, I had an interesting encounter.  I was sitting, waiting while Colt and Ryan were in the restroom, and I could feel a lady looking at me.  You know the feeling.  So I glanced over at her and she said "I know you from somewhere."  I hate that.  I never know where that could be.  So we talk for a few minutes and I finally say, "Do you ever buy ice?"  Ha.  It was my last ditch effort.  She said "Well, actually, yes.  I used to do so often!"  This led to her saying "I had a really great experience there years ago..."  She began to tell me a story that made me cry right there in the doctor's office.  She was a foster parent and about 8 years ago, she called to see if they could have some ice donated for a fundraiser for the foster children.  She spoke to a really nice older lady (my precious Nana) who agreed to donate the ice a few times.  The lady went on to say she sent a thank you card to the ice company and went on about her business.  Then, a couple of months later, before Christmas, the lady's phone rang.  The woman (my Nana) said "I know you don't remember me, but I can't stop thinking about those children."  Nana then told her that she wanted to help her with Christmas for those children.  She told me that she would forever be grateful.  Nana never told anyone what she did.  I had never heard that story, but it absolutely made me cry like a baby right there in the waiting room.  I have never been more proud of her. 

My stepdad got the results of his MRI on Tuesday.  He has a few tumors they are watching and one of them has not shrunk anymore and some of the smaller ones seem to have shrunk a bit.  At least they are not growing, so that is great news.  However, there is now a spot on his lungs they are going to watch and check again in August.  They are not biopsying it because he is already undergoing chemo, so there isn't really much more they can do anyway.  We are praying hard that it was just a bad read and it will not be there on the next scan.  

Other than that, not much has changed in our lives.  We still haven't sold our house and it is hanging on me like a weight.  Colt is continuing to do new things every day.  He is "talking" a lot, though we technically don't have many new real words.  He has a new favorite game.  He loves cars, and also loves logos.  The logos of anything really...cars, stores, the hospital, etc.  He can recognize them all!  The combination of the logos and the cars is the new game.  He sees a car, a Lexus for example, and can tell you who drives that brand of car.  Whenever he sees a Lexus, he yells "Pawpaw!"  Whenever he sees a Toyota, he says "Eeeeah!" (Leah).  Whenever he sees a Cadillac, he says "Gaga!" (Granddad and Nana).  It doesn't have to be the same model, either.  I love it!  :) 

Anyway, sorry this was so long!  I'll add in some of my favorite pictures from the past couple of weeks. :)
 Playing golf with Daddy.
 Puddle jumping!
 Doggie snuggles!
 Playing in the TV box while it storms.
Colt got a sour blackberry! 

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!