Sunday, June 24, 2012

Dakota Man

It has been awhile since I updated about Dakota...I have struggled finding the time to even get on the computer is so busy and when Dakota is awake I feel guilty being on the computer so I only usually get on early in the morning after I workout and he is still asleep, during naps or school, or after he is in bed (but usually Zach wants my attention then).

Dakota finished school the end of May and started summer school last week. We are sure going to miss his sweet teacher Miss Nita and all of the kids in his class including his cute girlfriend Elcee. ;( I was hoping she would still be there next year but she is moving onto hopefully this next year he will make some new cute friends that will give him as much attention as he got this year.

Sweet Elcee showing him a book and rubbing his back...she is a cutie!

On one of the last days of school I got to go on a little train ride around the big town of Corrine with his class and I finally got to meet Elcee's mom. I had to tell her how much we love and appreciate that cute girl!!

So he had missed a couple of days of school and I got an email the day before he went that they were having school pictures. I thought...well I will at least buy a class one because I'm pretty sure his individual one will not be so cute. I just pictured them leaving him in his wheelchair, him crying, and them snapping a picture. Boy was I wrong! When I saw the proof I was in love!! Not so much with the corny background but with his cute face. They took the time to help him sit in this little chair with people out of sight supporting his cute little head and body and captured the cuteness of my sweet Dakota! I so appreciated it and of course bought the biggest package they had!
Here it is!
It's not super clear cuz I had to scan it.
And here is his cute class!

Summer school is a little different then the school year. He goes 3 days a week 2 weeks on and 1 week off for 2 hours. There are only 4 kids total in his class and none of them are verbal so it is a lot different. I send him mostly for the social aspect so I'm not sure that he will get much of that through the summer but hopefully he will still like it.

I took him to the pool for the first time since his accident the other day. (forgot to get a pic) I was SO surprised how much he liked it. He didn't smile or anything but he wasn't crying I take that as a positive. We pretty much just sat in the shallow part and splashed and watched all the chaos around us...occasionally getting splashed by kids running by. He was so chill the whole time just sitting in between my legs. It felt good so be out in the sunshine...I LOVE the sun!!!

We are still struggling with his moodiness. We are at least getting a few smiles each day which is a little piece of heaven but man can this kid be ornery. He used to be really good when we were out and about but lately he will cry the whole time we are in a store which is quite frustrating. Also if we were holding him, watching some favorite shows, or playing with the IPad he would almost always cheer up but lately even those favorite things don't always help and he has lost interest in them. He still most always prefers to be held and walking around but I can only do it for so long before my arms and back want to break. We have experimented with a couple medications but they haven't seemed to help. Awhile ago I was getting a little frustrated not knowing what it was all about...was it something bothering him, was it stomach aches, was it boredom, was it just being a 3 year old. So I decided to treat him like the 3 year old he is and put him in his room when he would cry and not stop. I gave him the choices to be happy and play with mom or go to his room. If he continued crying then  I would lay him on his bed and tell him I will come and get him when he is ready to be happy. Surprisingly most of the time he stops right away and just chills out in his bed and a lot of times is better when I bring him out. Sometimes it takes a handful of time outs before he changes and sometimes it doesn't change his mood at all. I think he almost enjoys being alone in his room more then being out there with me....Zach and I wonder if he cries now just to go to his room. It at least gives me a minute to chill out instead of getting so frustrated at listening to crying non stop. Who really knows?! Still trying to figure this kid out.

His dystonia (which is when he stiffens his whole body and arches back) has gotten worse and not so sure why. It is SO hard to hold him when he gets like that and I think it is uncomfortable for him too. I think it probably hurts his muscles and cramps them up. It takes all the muscle I got to get him to bend and relax and you can tell he feels better when he finally does. The worst is in his stroller. Most of the time we take him around in the jogger stroller but it is getting too small for him now. When he arches and stiffens in that he pushes his body so hard into the straps and just cries and cries until you get him to relax. I just wish I could get into that little head and understand what causes it. We are in the marked for a new jogger stroller...a medical one or just a bigger one...any suggestions?!

On a brighter note he has had some of his BEST sessions at swallow therapy he has ever had lately. He is using his tongue and mouth better, starting to organize his suck, swallow, and breathe. Miss Vicki even gave him his first spoonful of applesauce and he handled it really well...kept most of it in his mouth and swallowed pretty fast.

Sucking on his bottle

Spoonful of applesauce!

He LOVES going to swallow therapy because he LOVES tastes. That is really one of his only motivators that I have these days to get him to do his crawling exercises. It is the one thing that can sometimes cheer him up.

The other day we had a cool experience that showed us how well he understands. He was really on the ornery side and cried the WHOLE time I was in Old Navy buying him a swimsuit (and a few other things...I can't help myself! ;) ). Afterwards we were headed to his swallow therapy appointment and he was still so ornery I almost thought of canceling thinking it wasn't worth it when he was in that mood. I pull up and as I get him out I tell him, "do you wanna go see Miss Vicki and get some tastes?" He immediately gave me the biggest smile and started to giggle. I couldn't believe it! He kept smiling and giggling the whole way in the building.
I wondered if it was really from that but when we picked Zach up on the way home I told him about it. He looked back at Dakota and said "did you get to go see Miss Vicki and get some tastes?!" And right away big smiles and giggles. I knew that that was from that. It was SO cool to get such and immediate and clear response that he understood and was able to express his feelings. I just wish we could see it more often and that it could be consistent. I am grateful for that moment though...we need reminders that our sweet little boy is inside of that body and he knows and understands.

Thanks for all the sweet prayers and comments that keep coming our way. I wish I could say we are doing amazing and getting things under control and life is easy breezy BUT not yet...hopefully one day! ;)

Tuesday, June 19, 2012

Does Time Really Heal?!

Did that boy really exist???

This is what I thought as I passed this last family picture we had taken before the accident. I look at that picture every day as I walk down the hallway and look at that sweet face. Tonight the tears came I had a "moment" as I looked at it as I carried Dakota to bed.

I remember that day so well but yet it doesn't feel real anymore. As I stared at old pictures on his wall as I sang him his nightly song I remembered that boy in those pictures...

 but he didn't seem real.

I have thought a lot about the saying "Time heals all things" lately. As we gathered at sweet Gage's grave site today to release balloons on the 1 year anniversary of his leaving us...I heard someone behind me will get easier now that it's been a year...time helps heal...I kinda wanted to turn around and say...NO IT DOESN'T! I know they meant it with great intentions but to me...I don't think it does.

I think time HELPS but it doesn't least for me. The more time has passed I have learned to cope and handle things better. I have accepted the way things are and have gotten used to it BUT the more time that passes the more this little boy doesn't seem to have existed.

The more time that passes it is another day I don't get to hear his voice or see him run. The more time that passes is another day that I MISS him and I feel like I am losing him. The more time that passes I start to worry that I will never get to see him take a step again, or see him even pick up a toy, or say mommy, or kiss me.

The same goes with Zach's eyesight. Sure it was A LOT harder in the beginning and as time has passed we have adjusted to life with 1 driver, and have learned how to get by with what sight Zach does have but it doesn't mean it doesn't completely SUCK! It doesn't mean that there aren't days where I get SO sick of driving and I just want to sit in the passenger seat just one time. It doesn't mean sometimes Zach still cries because he can't drive himself somewhere like everybody else. He still gets frustrated that it takes him FOREVER to find something or do something that is so easy for everyone else. He still runs into things and gets pissed and every day is still really hard. Easier but still hard.

It's been almost 3 years since Zach lost his sight and 1 year and 7 months since Dakota's accident and time has not least not yet!

Thursday, June 14, 2012

Prayers for McKennlie!!!!

This sweet 8 year old girl that is family friends with my husbands family got into a 4 wheeling accident camping with her family several days ago and suffered a traumatic brain injury.

She has fought the swelling in her brain and is still with us...this is a miracle...we too recieved!

They are taking her off the induced coma meds and are hoping for some great miracles. Brains are SO critical...this family needs our prayers.

Here is a link to their blog for updates McKennlie. We were in their exact shoes and needed EVERY prayer and felt the strength from them. Now the Provosts need them. There is also info to donate to a bank account in their behalf...PLEASE help this family!

Sunday, June 3, 2012

Strokes for Dummies

So if you look to the right side of my home page you will see I have a spot for blogs entitled "my heroes." Now I separated these few blogs because they are people...most whom I have never met personally...but whom I feel like I know...who I connect with on a level that others can't understand...who have also at times cheered for me and given me words of encouragement when I needed it most through comments, texts, emails, etc....they are those AMAZING individuals who have been through, are currently going through, or may even have a lifetime of going through a big trial that they never asked for but are living with such grace. They are individuals who I look up to with love, respect, and admiration for how they are living their lives despite what they have been through.

Everyone knows the quote "misery loves company" and that sounds horrible but I have to say it is somewhat true in a way. I don't wish my trials upon my worst enemy (not that I have any...I really don't!) or any trials for that matter. I wish the best for everyone BUT when you are going through something hard...there is some comfort in knowing that someone else out there is hurting too...that they understand...even if it's in a different way...they have felt what pain in your heart really feels like. And it's those people who really help you through and give you hope and strength that you can get through it too!

I LOVE blogs in the way that they can connect you to SO many people whom you would have never known otherwise. Don't you love how you can feel like you know somebody SO well but yet you have never even seen them in "REAL" life. These people are like celebrities to me...and maybe one day I will get to meet some of them...give them not just a handshake...but a big ol hug and say THANK YOU!!! my of these heroes is a lady named Jodi. As a young mom...JUST having had her 3rd baby a few days old...she had a stroke that left her hospitalized for a long time and unable to take care of herself or her family for over a year. She had a trach, peg tube (like Dakota's g-tube), had to learn how to hold her head up and sit up and everything physical again. She is still recovering but home now with her family and doing amazing and recording it all on her blog.

I first came to know her because she left me a comment on one of my posts quite awhile ago and talked a bit about how she could relate with Dakota...people cheered for her too when she first rolled over!! She too was cheering for Dakota! I checked out her blog strokes for dummies and fell in love with this woman and ALL that she has overcome. It intrigued me that there was someone with whom I could ask questions to about some of the things Dakota might be feeling or experiencing that she in some way knows. Although their situations are different she has gone through pieces of what Dakota has experienced so a little while ago I asked her a lot of help me better understand how Dakota feels and help me be a better mom to him. Things like how does it feel to be suctioned out of the trach??? The doctors and nurses can tell me how to do it and what it is doing but not what it might feel like to him...they have never experienced it! She has been SO kind and willing to share anything and everything to me and it has been such a neat opportunity chat with her. She answered my questions with blog posts...2 separate ones cuz I continue to think of more and more. Check them out answers and dear tessie. She is someone most definitely worth following!!

THANK YOU JODI...YOU ARE MY HERO!!! (and Dakota's too)

Friday, June 1, 2012

Daddy is missing his workin buddy...

Oh Dakota,

How much we miss your little body running all around the house!! It's hard to think about those days when you were so active and now those little legs can no longer take you where you want to go. I understand why you want to be held so much and just love walking around the house...I can't imagine what that must feel like for you to have that freedom and independence taken.

Daddy found these pictures of you when he was going through some of his work pictures. He called me into the office to look at it with tears streaming down his face.

You would spend all day in the trailer if you could. He LOVED how much you loved his skid steer and trailers.  In the winter time when the skid steer was parked in the garage he would take you out there and just let you sit and play and push all the buttons and pretend like you were driving. You were the best little workin buddy then and I could only imagine how much more you would LOVE to go to work with daddy now.

Me and you spent LOTS of hours after daddy lost his sight...driving him to bids, hauling his trailers and equipment around, and picking up parts for him. You LOVED riding in the 'big truck" and would always ask while we waited for daddy in the truck..."I wanna drive." You would look at me with that most handsome smile and I had to say yes even if I knew it would only be for just a minute. We don't get to do that so much anymore because it is a lot harder but oh how I wish we could.

Daddy told me something else he remembered that I didn't know. Whenever he watched you and didn't know where you went he would always call out for you since he couldn't see you very good. You got used to daddy always doin that so you learned on your own...every time daddy would say "Dakota!" you would answer right back..."I right here daddy." You didn't even know your daddy couldn't see very good but you were already his big helper! You are still the light of his life and mine!!


Miss this busy body! And sweet voice!