Organized Chaos.

It has been an unbelievably busy week since I last posted.  Organized chaos, maybe? Last Wednesday, a couple of things happened.  First of all, we had speech therapy.  I was excited to go because a couple of days before that, Colt made a new sound.  I realize that probably sounds silly, but we get excited any time he makes a new sound because that is one step closer to saying a word.  Humor me.  Anyway, we got to talking to our speech pathologist and our service coordinator about the neurologist and all that he had told us.  They both said almost at the same time, "That sounds like a stroke."  If you remember, when Dr. Miller called us with the MRI results, he kept saying "stroke" and that the damage looked "stroke-like" but would never say that he actually had one.  They said that if it happened in utero, we would never know.  We started talking about when and why I had to see a high-risk obstetrician while I was pregnant and it happened suddenly, when I was about 7 1/2 months pregnant.  Tiffany asked if I had been under any stress or if anything had changed around then...  It suddenly hit me like a ton of bricks.  My sweet Nana died about 2 weeks before I was sent to the high-risk doctor.  That was the most gut-wrenching, heartbreaking time of my life. Tiffany and Ashley both looked at each other like, "that's it."  Honestly, as soon as we talked through it, I kind of got that same feeling.  It might sound weird to say I hope he's had a stroke, but I kind of do hope that's what it is.  That would mean it isn't degenerative and that's exactly what we want.  I am trying to come to terms with the fact that we may never know exactly.

Also on Wednesday, we closed on our new house.  I haven't said a lot about it on here because I was afraid I would jinx it.  ;)  We bought a cute house in Stanford Place near my stepsister, Amie, her husband, Randy, and her boys, Tucker and Tanner.  It's bigger than our house now and has a finished basement that will make a great playroom for Colt and all of his bajillion toys.  The owners weren't quite ready to move out, so they were going to rent for a few weeks.  Long story short, they got to move quicker than they thought, so now we can get to work on cleaning and painting that house.  Ugh.  I do not enjoy that. 

The new House of Doo.

This week was hard for Ryan's family, because on Thursday, his brother, Chris, was admitted to the hospital.  He stayed until Saturday.  He's having constant severe migraines and is home now, but still is in a lot of pain.  He is supposed to see a neurologist soon.  Ryan, his mom, and his dad went down to be with Chris, so Colt and I were on our own this weekend. 

Friday night, my friend Julie came over to hang out for a while and we let Colt fingerpaint.  I mentioned earlier, he's been making a new sound.  It's a kind of "oooooo" sound. Well, we were painting with blue and we asked him to say it.  He got SOOOOOO close!  I was glad Julie was there to witness it.  :)  He's been trying to say it again for days and he's right there.  It's a HUGE step for him!  I am so proud.  :) 

Saturday night, I had tickets to see Elton John with my aunt, Diane, and friends, Lindsey and Jeff.  I was afraid I wouldn't be able to go with Ryan out of town, but our dear friend, Jody watched Colt for me.  Yes, the one who got locked out of the house by Colt last time he watched him.  ;)  I am so thankful to have friends we can trust with our son and that love him almost as much as we do.  As for Elton John, he was amazing.  It was truly a thing of beauty.  They kept zooming in on his fingers on the piano and putting them up on the big screen.  I was mesmerized by his short, stubby little fingers and the way they could dance over the keys of the piano.  He is a star, no doubt. 

Lindsey!

My dear aunt Diane.

So.  Sunday and Monday were relatively mundane.  Not much happened other than Colt really, REALLY showing that he is, indeed, a two year old boy.  Holy cow.  I hope this phase passes soon.  He is suddenly very short-tempered and difficult, maybe frustrated even.  I have been wondering if his communication difficulties would show soon and I am wondering if that's what's going on.  He does seem to be trying a lot harder to talk, which is good, yet obviously frustrating for him.  If we can just learn how to handle him when he gets this way, maybe it'll push him harder to talk.  I hope it doesn't have the opposite effect.  ;) 

At work with Daddy.

 

Well, that's my weekly catch-up post.  I hope everyone has a wonderful week.  

Thankful for the Challenge.

"God loves a lullaby
In a mother's tears in the dead of night
Better than a Hallelujah sometimes

God loves the drunkard's cry
The soldier's plea not to let him die
Better than a Hallelujah sometimes

We pour out our miseries
God just hears a melody
Beautiful, the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah..."

Someone sang this at church on Sunday and it got to me.  Oh boy.  I was crying after the first two lines, probably because I know it is true.  Sometimes I just don't know what to say to God and I just cry, but He hears it and it never fails, I always feel better afterwards.  My tears never go unnoticed.  He sees every single one. 

About a week ago, before our neurologist visit, I was wide awake in the middle of the night so anxious I couldn't sleep.  I finally began to pray for Colt and that the doctor would give us some answers and some good news, and as I sat there in silence, I did get an answer of sorts.  Most importantly, I got peace. 

I had a sort of epiphany, if you will.  Bear with me, I will try to explain.  As a child, I was always very smart.  I was in the gifted classes, always tested very high on the IQ tests and all of that.  I knew I was smart, but I wasn't often challenged and I got lazy.  Please don't take this in an obnoxious way. :)  Anyway, because I wasn't challenged, I didn't have to try very hard to make good grades and I settled for good enough, not the best.  Now, as an adult, I regret that.  Fast forward 20+ years to Colt. 

Colt is brilliant.  I know this.  He is also facing some HUGE challenges.  He is different.  He will have a hard time.  He will struggle.  That night, lying in the bed, I was suddenly thankful that Colt will struggle a bit.  He will be challenged.  Think about it.  The coolest, most inspiring, most successful people in the world have often overcome some serious struggles.  If you have to fight for what you get, you are more grateful, right?  I am clinging to the hope that Colt takes these challenges and runs at them head-on, as hard as he can go.  He can overcome this, I know.  I believe in him.  Ryan believes in him.  Our families believe in him and many of you believe in him.  Most importantly, God believes in him.  "And if our God is for us, then who could ever stop us?" 

So, for now, we are going to take the sign language thing and run with it.  We will continue speech therapy and continue to try to get him to talk, but I want him to really learn the sign language.  It can't hurt him to learn something new.  Learning it will only enrich his life later, while helping him to communicate now.  I am hopeful he won't always need it, but if he learns it now, he'll most likely carry that knowledge into adulthood.  Who knows where that could lead. 

I also want to take a second to say "Thank you!" to all of you that have been praying for us and for our precious boy.  Last week, I was overcome with anxiety over Colt's future, but now I am feeling peace.  Thank you for prayers, encouragement, hugs, and tears you have shared.  We feel them. 

I had so much to blog about today, but I think I am going to stop and leave you with some pictures from our weekend.  I hope you enjoy them. 

Colt helped dig up the flower (weed) bed, while singing. ;)

Our little house with new shrubs.

Handsome boy. :)

We made Play-Doh cookies

And we fingerpainted! 

Thank you, God, for this reminder that you are in control.  NOT ME.

Trust.

We just got home from the neurologist's office. It was a long afternoon. Dr. Miller didn't really tell us anything that he hasn't already told us. We still have a long way to go.
Dr. Miller didn't talk much about Colt's lack of speech and what we can expect because he is much more concerned about a bigger problem, one that may be hindering Colt's ability to speak and who knows what else. As desperately as I want to hear Colt speak, I can live with no words if he is otherwise healthy.
Dr. Miller said there are two "boats" Colt could be in. The first boat is that this situation is as bad as it will get and from here, we learn to deal with the hand Colt has been dealt. The second boat is that this could get worse...that this could be a degenerative disease of some sort. The problem is that, right now, Dr. Miller does not know what boat Colt is in. I am going to be completely honest when I say that scares the mess out of me. I want that first boat with a passion.
The doctor said Colt has it hard in the fact that what is wrong is not terribly obvious. That sounds weird, but if there is an obvious part of his brain that is messed up or even missing, you pretty much know what will happen. When it isn't as obvious in the damage department, it makes it much harder to figure out exactly what is wrong, what it will affect, and that makes it harder on Colt because he has to go through a lot more testing to figure it out. All we can do now is trust God and trust doctors. I am probably the least trusting person ever. I am guarded and skeptical. This will be a challenge.
Our poor boy...Nystagmus, strabismus, 8 ear infections, asthma, bronchitis, sinus infections, allergy testing, orthopedists, two MRIs being put to sleep, ear tubes, three eye surgeries, seeing specialists two plane rides away, more doctor visits than I could ever count, and now add in a neurologist... He has been through so much in less than two years, yet he is such a delightful, happy, beautiful, brilliant, sweet child. I am supposed to be teaching him about life, but instead, he's teaching me. And trusting me.  I am in awe of him. I truly am.

Weekend Getaway.

I am sad that our weekend is over, as usual, but this past weekend was VERY nice.  We got to get out of town to a cabin in Pigeon Forge with two of our best friends, Jody and Lauren.  Colt stayed with my dad and Judy, so we were kid-free, but we took our dogs.  Jody and Lauren took their chocolate lab puppy, Piper, too.  It was quite the little road trip with 4 adults and 3 dogs in one pick-up truck.  :) 

We left Friday afternoon and made our way to our two bedroom cabin.  It was beautiful.  We got settled in and went out to the Smoky Mountain Brewery for dinner.  The next morning, Lauren made some monkey bread muffins for breakfast (amazing!) and we set out to go shopping.  We spent the morning at the outlets in Pigeon Forge, had lunch, then spent the rest of the day in downtown Gatlinburg and around.  I haven't been to downtown Gatlinburg in years and it has changed a lot.  We had a great time and shopped too much. ;)  Ryan and I both got new boots and Colt and Ryan got some new clothes.  I also got a new Kavu bag.  That night, we grilled out at the cabin and had hot wings and ribs.  We spent the evening eating and playing countless games of Uno with a fire and our dogs.  It was great.  Sunday morning, we ate breakfast at the Old Mill Restaurant and stuffed our faces. ;)  We were back home by the afternoon since we had the dogs in the truck. 

Roxie, Piper, and Lexie love their vacation!

Gatlinburg with Ryan

What a beautiful view! 

Wonderful friends.  We are so blessed!

Lexie got her hair done for the trip!

My new boots.  I'm in love.

It was nice to get away and it was nice to not have to worry about Colt in the cabin and while we were shopping, but I missed him terribly.  It helped having Jody, Lauren, and the dogs there though.  I think if it were just me and Ryan we would have talked about him the entire time and made it hard to be away.  He had a great weekend though, from what I hear.  He got to ride the tractor, help his granddad shovel and he "played" in the mud.  I know he loved it.  He must have played hard because he slept until 10:30 on Monday morning and then he took a good nap!  I bet his Nana could have slept that late yesterday too, if she didn't have to work!  He is exhausting! 

Yesterday, it rained so Colt and I didn't do much besides watch movies and do laundry.  It was nice to have him back. I missed that little booger.  Yesterday, after his nap, I was changing his diaper and he patted the clean diaper as I was putting it on, then pointed to the bathroom and did the sign for "potty."  I ran him in there and as soon as his hiney hit the potty, he peepeed!!  He knew before he went!!!  YAY!!!  I am so proud of my sweet boy.  :) 

I missed this precious face!

Sharing his Goldfish with Lexie. He missed his dogs, I think!

My stepdad starts chemo next week, on the 14th.  Again, I beg for your prayers.  The doctor has given him some serious pain meds to help keep him comfortable.  They prescribed morphine and oxycontin.  I don't take that as a good sign, but I am trying to remind them that doctors do not know everything.  I have heard more than one story lately of someone who has beat the odds and outlived their "time left."  I hope the same for Allen.  And Mom. 

Colt's neurologist appointment is tomorrow at 11.  I am ready.  I am trying to prepare myself for the chance that we'll leave with no more answers than we started with.  Dr. Miller said on the phone that he could help us understand more in person than over the phone.  He said he'd draw us a picture and we'll see the MRI, so if nothing else, maybe we'll understand more after tomorrow. 

One more thing, I don't want to say too much for fear of jinxing us, but yesterday I made a list of things to do so we can put our house on the market.  I am so flippin' ready to be back in Flintstone.  If anyone is looking for a 4 bedroom (1 is a big bonus room with a huge walk-in closet), 2 bath house in a nice, new neighborhood, give me a call!  :)  Our house is great and our neighborhood/neighbors are great, but we're wanting to be closer to my family's farm.  Just throwing that out there! ;)

Brag Post.

Happy Thursday, everyone!

Yesterday was a rough "anxiety" day and I cleaned the entire house.  I even "Pledge-d" the baseboards, washed the sheets and the quilt on the bed, dusted the blinds, and washed the dog's bed stuff! Oh yeah.  Anxiety is good for my house, that's for sure.  It should really happen more often.  Maybe I just needed to get all of that nervous energy out, because today I am feeling a bit better. 

We also had speech therapy, went to the grocery store, and ate lunch out.  It felt good to be productive, but I fell asleep during Duck Dynasty.  DARN. :/  I must have worked really hard!  ;) 

I just wanted to take a minute and brag on my sweet boy.  He is SO smart.  Yes, I realize everyone thinks their child is smart and I suppose they all are.  But, the associations that he makes are truly amazing.  He understands things that I never imagined a 2 year old could understand, especially when they can't communicate back to you - in words, at least.  I just have this feeling that he is smarter than we think.  I realize that I sound silly or just like a proud parent, but you'll see.  I am telling you, this child is brilliant.  I can't even put it into words.  It's a feeling, an intuition, whatever.  Last night, he cried and cried when we put him to bed, so we finally got him back out and I rocked him.  He fell asleep on my chest for the first time in a very long time. As I rocked him, I prayed for him.  I prayed that God would work miracles in his little brain and that he could heal it or at least create new pathways for his brain to work.  I prayed that he would help Colt learn to talk and help him to excel in ways that we could never imagine.  It will happen.  I know it. 

Recently, Colt has learned some colors, he consistently knows red, blue, green, yellow, and orange.  He sometimes gets purple. He can also point out some letters and numbers, his favorites being 2, 3, S and M.  He can also recognize his name when he sees it written.  Maybe this is normal, but it makes me very proud either way.  He is unbelievably visual, which is kind of funny since his first two years of his life were spent not seeing very well.  One of my favorite stories shows that...  A while back, Tucker, my 17 year old nephew, was at our house and Colt was sitting in Tucker's lap.  Tucker pulled out his iPhone (Colt is obsessed!) and put in his 4-digit passcode.  A few minutes later, he did it again.  The third time Tucker pulled out his phone, COLT PUT IN HIS PASSCODE.  The right way, the first time.  We were amazed.  If you show him something once or twice, you can bet your bottom dollar that Colt can do it right the very next time. 

Colt still only says "Mama" but they do not consider it a word, it is a sound, so technically, he still says zero words.  BUT he has learned quite a few new signs recently.  He now knows please, more, milk, bites, juice, drink, cracker, baby, help, potty, stars, bubbles, thank you, want/have, airplane, lion, apple, dog, drive, come here, and bird.  I feel like there are more, but that is all I can think of right now.  He has made up a couple of signs on his own too.  He tells me when he wants to do something on his own and when he has a boo boo or wants a bandaid.  I love the signs and that he can communicate with me to some extent.  We're working on mommy, daddy, grandmother, and grandfather too.   Also, I love you.  That one is hard, it uses 3 fingers and he struggles with his fingers. 

Last week we bought Colt a potty.  The first 3 times he sat on it, nothing happened.  The fourth time, he peepeed!!  We were so excited!  He then peepeed the next 3 times he sat on it!  He did it again a few times throughout last weekend, probably 8 or 9 times total.  He was even "asking" to sit on the potty.  Then Monday, nothing.  Tuesday, nothing.  Wednesday, nothing.  What the heck?  It's like he forgot how.  I have no idea what happened!  Is that normal?  Anyone know? 

Well, there we are.  I guess I was in a "talking" mood.  :) 

Colt loves to wear his new sunglasses on his head. :)

 

Kisses from my sweet boy.

My little stud is ready for church!

Happy boy. :)

 

Anxiety Abounds.

Well it's Tuesday, my usual blogging day.  I don't have much to blog about though, so this could get lengthy.  Ha.  When I don't have a topic, I tend to babble.  I'll try to refrain. 

Honestly, all that is going on with us is a whole lot of waiting.  We have one more week to go until we get to see Colt's neurologist.  I realize we are obviously getting closer to the appointment, but it just doesn't seem to be getting any closer.  I have been struggling the past couple of days, mostly with a sort of anxiety.  I am so anxious to see the neurologist, but at the same time, I am filled with this unexplainable certainty that we still won't know any more than we do now.  Last week, I was okay with just going along as we are now.  This week, I am so ready for a definite answer, a prognosis, a plan, a treatment though I do understand there won't be a real treatment.  I hate this and I am trying to be positive and remember "it could always be worse" but it's still hard to handle when your child is different or if life might be harder for them. 

Also, my stepdad goes Thursday to find out his cancer treatment path.  He will most likely be doing chemo again, with radiation this time, but I don't know when they'll start.  I am also anxious about this, as I know he and my mom are too. 

I guess that's all this blog will be...  Prayers for peace and the ease of anxiety.  If you could send some, that would be great.