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.

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.  :)

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.

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!

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!

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. 

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.  :)