Monday, May 3, 2010

Sunday morning, Kolton woke up sick. He crawled inbed with me and I held and rocked him back to sleep. As I lay there holding him, feeling his heartbeat, I couldn't help but imagine that this is what heaven must feel like. Innocence at it's purest!! I could feel my heart bursting with love and in the moments before I feel back asleep, holding Kolton against my chest, love, faith and hope were restored!!

Monday, March 22, 2010

Walk Through This World With Me...

Have you guessed it? Yep that's right!!! Kolty is a walker:) He just let go one day and walked all on his own! Super proud of the little stinker. He has done amazing, and I have to blame it on his Zoloft. I mean this a miracle drug- I have also been taking it and wow. I feel so much better, so I can imagine how he feels! Lots of new things going on around here. Kolton has learned to use a straw, shake his booty, walk, crawl thru a tunnel (on his 1st attempt:) and babble nonstop. I swear, every now and then he actually says a word that is filed away in his little library brain and at any given moment it just pops out! You have to really be listening to him, cause if you turn away you may miss it. The other day, I know he said bath, what, baby, and ball. And no I am not the only one that hears these words, Kaylee does too:) Kolton is so proud of himself that he can walk- last night I went to a friend's house for dinner and left Kolton at home with Dada. Of course he missed me, (as I missed him too) so when I came home he had to show me how excited he was by walking as fast as he could from couch to couch. Oh I love that little monkey! He still crawls about 70% of the time, but hey, I will take what I can get:)

I am currently struggling with the idea of sending him to a daycare center part time for some kid/social interaction. I am having a hard time letting go, so as of right now I still have not filled out the enrollment form. Lol. It is sitting on the kitchen counter as a reminder that he needs/should go, but when I am ready I will do it. Shannon and I scoped the place out, and I do really like the place just not the idea of Kolty not being with me. I feel a panic attack coming on just thinking about him going. We did schedule his OT session there 2 weeks ago and he LOVED it. Didn't even know that I had left the room:( Trader!!! While he was there he crawled through (on his 1st attempt) a tunnel. I was so proud, but of course Mama was on the other end. He probably would crawl through fire to get to me:) As I would also for him:) He really enjoyed the change of scenery and liked all the new toys. He suckered Shannon into reading him a book over and over, with his unforgettable dimple smile and giggle!! But she LOVED it!!! I was jealous! Lol. So in the near future, expect a 1st day of school entry from me. It may be a little on the wacky side cause I may have to double my Zoloft dosage that day (or have a tequila shot).

Shannon also bought Kolton some really cool (disposable) cups with a straw and on his 2nd attempt was successful at using them!! Woo hoo Kolty- another OT thing we have been working on. Using a straw will help build his oral muscle tone, while giving his some oral feedback. It's like a 2 for 1 deal. I have been making him smoothies and milkshakes so he can really get a mouth workout trying to suck them through his straw. He loves it, almost prefers them now to his sippy cup. We went out to eat the other day and he thought he was real cool because he could drink his sweet tea like a big boy:) Yep, sweet tea, his new favorite! Thanks Shannon, for the cool cups. Geeze, Shannon is getting a lot of recognition on this post!!! Lol, she deserves it:)

Over spring break, Kolty learned how to shake his booty. Hilarious!! I sing this really cheesy line- Shake your Booty, Shake your Booty, and he goes nuts!!! Shakin' his little money maker!! I swear this boy has the cutest tush ever!!! Since he was a baby I have said he will grow up to be an underwear model. So to see him shake it, oh so so so cute!!! It really looks a little more like dirty dancing, somewhat inappropriate behavior, but hey- boys will be boys, right?!

We were also in a minor accident over spring break. Kolton and I fell off our John Deere Gator, while Dada was driving. He had to get 3 staples in his head. But he was such a trooper, and every nurse working that night had to come see Kolton. He was the talk of the ER that night. What a flirt- giggling, batting those baby blues at every nurse that came in. So at any given time, he had about 5 nurses coming in and talking away to him, all the while he was just eating it up. Geeze, I felt like I needed to beat these ladies off with a stick!!! Haha, but what do I expect, he is the cutest baby boy ever!!!

The same day, March 18th, that we were recovering from the accident, was also our one year Diagnosis Anniversary. Wow, one year already. All I can say is, I made it. I can still remember that day like it was yesterday. I can remember what I was wearing, what Kolton was wearing, what the Doctor was wearing- get the idea!!! We went to Kolton's pediatrician because Kolton had been sick. I knew the test results were probably back since we had gone on February 27th for blood work. Our pediatrician at the time, wanted to call and get the results. I didn't want too- I already knew in my heart. I had to sit, what seemed like forever, for about 30 minutes while the doctor called for the results. He came back into the room and said the results were back and Kolton did have Fragile X. I can't even explain what I felt. Numbness, I wanted to scream, cry, die- I wanted to hug my doctor and sob like a baby, scream why us, pull my hair out, anything I could think of. But I didn't. Kaylee was also with us and I had to be strong for her. I let a single tear run down my cheek, my doctor said, this is what we had expected anyway, we must now move forward and get him the services he needs. I hated him for saying that. I wanted him to hold me like a father would and say everything would be ok, it was ok to cry. But I understand, he was just a doctor- I still struggle with the fact that doctors can seem so cold, what if it was them in that situation? That's why I LOVE our new pediatrician!!! Yep I changed, cause I just didn't feel like our old doc was personal enough.

So in honor of our anniversary, I have decided to get a tattoo. A tattoo that brings awareness to fragile X, one that reminds me of how far I have come on a personal level. I am a changed person, good, bad, and all that's in between. Everything has a whole new meaning for me, including the song that Robert and I danced too at our wedding- I can't help but sing the verse over and over with each step Kolton takes-

Walk Through This World With Me, Go Where I Go
Share All My Dreams With Me
I Need You So
In Life We Search
And Some Of Us Find
I've Looked For You, A Long Long Time

I will always & forever walk with you, a million times over through this world.
I've looked for you, a long, long time:)

Friday, January 15, 2010

Mysteries Of The Mind

I'm so excited I don't know where to start!! The 1st week of January we took a trip to the MIND Institute in Sacramento and the day after we arrived back home, Kolton fed himself!!! Yes you read that right!!! Kolton FED himself and is still feeding himself today!!! YAY, I am free!! Free to just put food on his high chair tray, snacks on the floor (in a bowl:), whatever, and he will eat it!!! OMG!!!

Ok, so let me back track a little so I can lead up to how Kolton FINALLY decided to give me a feeding break!! Robert, Kolton, and I were lucky enough to get a paid trip out to California to the MIND Institute. (This is like going to the White House and meeting the President for FX families). I have to admit, that our trip didn't turn out exactly how I had expected, but I did have an AMAZING time and would do it over in a heartbeat. I had expected the trip to be more about Kolton, but turns out, I was the lucky one and participated in numerous studies/research tests. I kind of enjoyed it being all about me for once!! Right now, at the MIND they have a ton of studies going on for fx carriers (I am a Carrier). My schedule included-blood work, Neurophysiological Assesment, Psychophysiological Assesment, Psychological Interview, Genetic Counseling, NTRI-TS Assesment, and a very long MRI. Pretty Fancy, Huh? Kolton participated in an eye tracking assesment and developmental assesment and also gave blood. He got off easy this time:) On Wednesday, January 6th we met with Dr.Randi Hagerman, our HIGHLITE of the WHOLE TRIP. She went over tons of info and said that Kolton is doing wonderful- we are on the right track and all his therapy/services are the right ones for him!!! She did reccommend ABA therapy for him, and we are looking into that right now. Kolton is right on track developmentally (even a little ahead in some areas), compared to other fx toddlers his age. The only kind of "bad" news we heard was Kolton has pretty severe Low Muscle Tone, which we already knew anyway. This is the reason his ankles bend over so bad, and why he is still not walking. Low muscle tone is one of the characteristics of fx, but like all of them can range in severity and Kolton falls into the severe category. So we have increased his PT therapy to 3X a month compared to 2, and plan on doing therapy riding every chance we get. Dr. Hagerman did say she thinks he should be walking in a few short months and did prescribe him Zoloft. Turns out, Zoloft is like a miracle drug for his age- it will help his MUSCLES tighten, help with speech, lessen anxiety (which he has almost zero of:) and help him not to regress (common in fx). Dr. Hagerman did also say Kolton DOES NOT fall on the Autism Spectrum, he is TOOOOOOOOOOOOOO Social and is very engaged in his surroundings!!! YAY, go Kolty!!! The zoloft will also help him stay social and hopefully keep him from the Austism diagnosis. We were very happy to hear all the great things that she had to say about Kolton, including that he was one of the cutest little fxers she has seen!! Well we all knew that already though:) During our visit, besides the not walking yet, my other main concern was Kolton not having any interest in feeding himself. If you know Kolton, you know he LOVES, LOVES, LOVES to eat, anytime, anywhere, but only if he is being fed. I wanted to know if this was a sensory/tactile defensive situation or what I could do to speed this process on- this is what Dr. Hagerman replied (in a nut shell)-

I have fed Kolton for about 2 years and now he expects it. It's not a sensory problem, it's more of a hard headed, habitual, OCD problem!! He has it in his mind that Mama feeds him and thats just how it is. She said to give him the chance to feed himself- just lay his food in front of him, let him decide what he wants to do.

So when we got home, I did just that. I out his dinner on his high chair and to everyone's amazement he picked up his fork and ate, and ate, and ate!!! Holy Moly, I am still in shock one week later!!! This little monkey could fed himself all along. OMG, all along he could do this and he was playing me for a fool!!! Shannon (his OT) and I have been working on this for a YEAR- thru beans, rice and very messy birdseed that by the way doesn't vacumm up as easy as you would think. All this sensory play, tactile defensive play- and he could do it all along. So I am thinking that Kolton probably knows way more than he lets on, and he just keeps it to himself so that we can feel like we are in charge!! Today, Kolton is also PICKING up his food with his cute little fingers and eating it. It started with cereal, and now is not limited to anything. Chicken nuggets, carrots, peas, green beans, french fries, sticky rice krispy bars, gooey jelly bars, soft muffins, you name it, he'll pick it up and eat it!!! Oh, the freedom I have found:) I can just give him a snack all day and just let him eat. I have always worried that he wasn't getting enough food, cause I was the sole feeder here and sometimes didn't have the time to sit down and feed him a snack. Heck just his 3 meals a day took about an hour each- So now I am just LOVIN all this so called free time where I can sit him in his chair and let him go to town. I actually got to enjoy my dinner the other night instead of scarfing it down super fast or eating a cold dinner because I had to worry about feeding Kolton. Yep, cold food and heartburn is a thing of the past for me:) Oh the simple things in life!!! The only way I can describe this to all you people who have not been blessed with the miracles a special child brings- it was like winning the lottery for me. Yep, it was THAT big. Nope, you may never understand it, but that's ok. I do and that's all that matters:) It is like watching the impossible, become possible. Witnessing first hand the mysterious ways the mind works. And the most rewarding of it all, not watching Kolton actually fed himself, but seeing his face light up because he is so proud of himself. Watching him pat himself on his chest like he is saying "Good Job" to himself. I LOVE it and him.

I love this kid, I love him. He is God's gift to heal me. He makes me forget about the past, and not focus on the future. I am stuck only in the moment and what today holds for us. Kolton is like that good mystery novel you can't put down cause you just want to know what comes next. And then wanting to read the sequel after you finish the book!! I can't get enough of him and each little mystery that unfolds in front of my very eyes is like a being present at a miracle.

Thank you for choosing me to come along with you,
as we discover all the mysteries of the Mind:)


Friday, December 18, 2009

New Ventures

Whoa! Where does the time go? I cannot believe, a week from today is Christmas! Lots of exciting things going on since my last post. Kolton turned the big 2 on 10-30! Such a big boy!! He had a Cowboy birthday party, but he was a little under the weather the day of his party so he didn't enjoy too much of it!! He got lots of great gifts and everyone else had a great time!! The beginning of November, we had 2 little boys come out (they also recv therapy services from the same place Kolty does) and do therapy horseback riding!! Super exciting!!! Kolton shared his pony, Coco Beans with the little boys, and they loved it!! We had 2 little ones scheduled to come today also, but one was sick so we had to cancel for now. I am super excited to get to share Coco Beans with other special need families. I have wanted to run a handicap riding program for a while, and am praying this is the start of something great. I will keep you posted!!

Kolton is on the verge of walking anyday now, he rarely uses his walker anymore and prefers to just hold your hand. He is working on confidence, and soon as he gets enough he will be off on his own!! I can't even picture in my head, the freedom he will have with walking!! I can't imagine him walking in the store or outside or anywhere!!! I am a little scared!!! But soooo ready- he's so heavy to be carrying around still:)

Ok- for the biggest accomplishment this month- Brace yourself, you may faint when you read what I am about to write!!!

KOLTON FED HIMSELF!!!!! WITH A SPOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
If I didn't witness this event first hand, I would not believe it!! He not only surprised me with his talent, he also shared it with Shannon (his OT, whom we now refer to as his 2nd momma, cause he called her mama one day, yes I was a little jealous!! But he LOVES her and so do I, so it's ok)
We were completely shocked, just to refresh everyone's memory- Kolton has NEVER, EVER fed himself, will not even pick up food or a spoon. During his therapy session, we were practicing hand over hand, helping him pick up the spoon and put it in his mouth, when all of a sudden he picked it up and put it in his mouth ALL by HIMSELF!!! We were screaming!!! And he looked at us like we were a little nuts!!! I swear he was thinking- Whats the big deal!!! I can fed myself I just don't want too!!! In fact, I know thats what he was thinking, cause I know Kolty and he is just so hard headed!!! and a little spoiled!! I still get excited when I think about that day!!! Brings a BIG smile to my face- I have never been so proud in my life!!!! You Go Kolty!!!!

Kolton also has a new word- Uh Huh!!! sooo cute!!! of course he doesn't use it appropriately but who cares!!! Its so dang cute, he could say Uh Huh for anything and I LOVE it!!!! The best part about it, when I ask him to say Uh Huh, he says it!!! YAY for Uh Huh!!!! He also is babbling a lot, and can say Ba for ball, bath and basket, Pa for plant, Ga when he sees Gramme, Fa sometimes for fan!!! Speaking of speech!! I decided to switch his Speech Therapy to a new facility that offers speech 2X a week. He was previously recieving speech 2X a month. Needless to say, I think I made a mistake! Yes, I was wrong:( The new place, we have to go to, versus them coming to our home. They also prefer to be one on one with Kolton, which means I have to sit in the waiting room. Granted, we have only gone once (we just started), I just can't do it!!! I could hear him screaming while I sat in the waiting room, and I have come to the conclusion, I am not ready for the seperation!! So I think I will stick it out for the rest of December, and in January start back with Brighton again!!!

The first week of January, we will be flying to California to the MIND Institute!!!! For those in the FX world, you know what this means and how excited I am!!! For those non FXers, this is like going to the White House and meeting the president- well not Obama, but a President you may have liked in the past!! Needless to say this is a HUGE thing for me and Kolty!!! A wonderful organization called Miracle Flights, bought us our plane tickets!!! WOW, I am still speechless:) I am in awe that there are organizations that are willing to help our special kids in any way possible!!

I have to say, when we were first diagnosed, I use to fear what the future would hold for Kolton. What struggles he may go thru, what he may never get to do, and worse of all, what other s would say. I don't know if it is because my life has been some what of a sheltered life as I like to refer to it. I haven't traveled to far away places, worked at an awesome company, all I know is the life immediatley around me. I still live where I was raised and have never really ventured in this world. I haven't really accomplished much. Maybe it was my own fears that I was putting onto Kolton's future. I used to be scared of what others would say about Kolton, if he would be teased in high school, would he have friends, will people understand where he is coming from? But the more I am venturing away from a "normal" life, the more I realize how many people really, genuinely care about our special kids. I can't help but be amazed at how many friends I have made, support I have received, and places I will travel to. All because God chose me to be Kolton's momma.

Whatever Kolton, does or does not do, I am at peace knowing that he will be LOVED wherever he goes. He is infectious, his innocence is consuming, his happiness is addicting and his smile contagious! Here's to the Life ahead!!! Uh Huh:)

Merry Christmas & Happy New Year:)

Mommy's Little Lion