Friday, February 22, 2013

Inch by Inch

Well, a post ALL about Dakota man is LONG overdue!! I am ALWAYS being asked how he is doing? SOOO many people love that boy and truly care about how he is really doing. A friend of mine asked me one time, "do you ever get sick of people asking you that?" The answer is NO! Not that I expect or want every single person I see to ask me about him...but I appreciate the fact that people truly care about him and want to know about him.

My sweet dad told me yesterday on the phone that a man in his church asked about Dakota and wanted a picture of him because his little children still pray for him EVERY day (it has been over 2 years now) and he wanted them to see who they were praying for. Things like this warm my heart!!

Every day is still a struggle and fight for Dakota and his parents...but we are doing good and we so appreciate the continued love, support, and prayers!  When I get asked the question how he is doing...sometimes it is hard to answer or explain because it is tiny little changes of progress that we see, not some huge drastic thing. I wish I could say, yeah he just started walking again, or said his first word. I still hope that one day those things might come out of my mouth. So I usually just say he is good...lame I know.

So I will try to describe what "good" means right now.
The biggest change, but that makes the MOST impact on our little family is Dakota's happiness. The first year and a half probably...the biggest struggle was that Dakota was crying or unhappy for about 90% of the time. Neither Zach and I do well with crying and when that is what you hear most of the time it is a bit stressful. I feared that this was what life would be like for the rest of our lives and prayed EVERY day for a change. It has FINALLY come. He is pretty consistently happy or at least content most of the time. Don't get me wrong we still have our moments and days when things aren't going so well (time out is necessary) but compared to where we were, it is AMAZING! Zach and I are both happier and are able to enjoy being his parents more and more because he makes life more enjoyable when you see that sweet smile! It literally lights us up. We still are constantly like...hurry come here, come look at him, look at his smile. I really don't think it will ever get old or taken for granted EVER again because we have experienced a time when there was no facial expression, to always a sad one, to now lots of smiles...if that makes sense.

Here is a video taken of him on his video monitor when he was supposed to be napping but decided to talk and laugh instead...
He is soo least him and I think he is!
(his thumb is glowing because that is where his sensor for his oxygen and heart rate is...just in case you were wondering. ;) )

Along with his happiness has come more responsiveness and alertness. This is where it is hard to explain but Dakota is definitely more responsive to things we say to him and we have found things a little bit easier to communicate with one another. It's like we are finally able to understand through his expressions, cries, and smiles what he wants (sometimes) and you can tell he is happy about that. Often times when he cries it is still a guessing game trying to figure out what he wants and we still are left guessing but it is getting better. For example, he will cry and you will ask him, "do you want ____?" He will either keep crying to say NO, stop crying and look at you got it, or sometimes even give you a smile to say YES!! He definitely shows signs that he understands what you are saying and that is SO awesome!!
One fun example was Zach's dad came up to help Zach put some holes in his slide that we crawl down because now he is using the holes (putting hands and feet in them like a rock climber) to help him push and pull down the slide and eventually we will climb up the slide. Anyways, they went out to the garage to work on it and Dakota started crying when they left. I asked him if he wanted to read a book and he just kept crying as if he wasn't even listening to me. Then I asked him, "do you wanna go out and see what the boys are doing?" He immediately stopped crying, looked right at me and smiled. I said okay let's go out there and see what they are doing and he just kept grinning and started giggling. He stayed out in the garage almost the whole time and was just smiling and happy to be in on the action. He wanted to be a big boy, not hang out with his boring mom!!!

We had his 2nd parent teacher conference the other day and we mostly talked about him transitioning to kindergarten next year. (yes...he is going to kindergarten...crazy!! I'm still wrapping my mind around that one) His teacher's biggest worry is making sure that his new teachers know that Dakota is a 4 year old boy (5 when he goes) inside of that body. He understands things and can make choices with his eyes and that he needs to be treated like the little boy he is...not a baby.
I have LOVED his teacher this year because she sees the boy inside of that body that he can't control. She sees what I see and wants others to as well.

These are a couple fun notes I got from school recently...

Physically we are seeing little changes as well. He is definitely stronger overall with his head control and just body in general. He still LOVES to roll back and forth but is just starting to learn how to get his body from his tummy back to his back. He still gets stuck and needs a little assistance but he knows that he needs to bring his arms up and is getting the hang of it and is able to do it by himself more then he used to. The smile he gets when he does it all by himself is priceless!! I love that he is proud of himself and understands that he accomplished something great!!

He is Mr. Popular at school! Not just with the kids in his class but all the staff. We will be out and about at the store or chiropractor and random people I have never seen will be like, "HI DAKOTA!!" They are usually other teachers or therapists at the school that don't work with Dakota but tell me, "everybody knows Dakota." His nurses that go to school with him always tell me that everyone that works with him...nurses, therapists, etc. ALWAYS say that Dakota is their favorite! I'm sure they tell that to EVERY parent but of course it makes my heart SOOOO happy to know that he is loved and valued by so many besides just his mom and dad. I love that people can see and feel of his sweet spirit when they are around him.

All the kids in his class have really come to love him as well. It used to mostly just be his best buddy Tommy but now all the kids are becoming more and more involved with him. There are 2 girls that he only goes to school with on Mondays and they LOVE Dakota and he loves him. The nurse tells me that he lights up differently with them then he does with the boys. He is a little ladies man! ;)
The other day when the teachers put his chair down on the floor for him to sit in in circle time the two girls hurried and sat on each side of him and held his hand during it. LOVE IT!!
The nurse captured it for me

She said he looked right at the brown hair girl and then gave this smile! ;)
That's my boy...go for the brunettes! ;)

He got invited to his very first birthday party for Tommy!! It was at the local bowling alley and it was so fun. Tommy was so excited to see him when we got there and introduced him to his grandpa. Tommy and his dad helped Dakota set up the little metal ramp so that Dakota could bowl too. Tommy would grab Dakota's hand to help him push the ball down. It was so sweet that they included him. It was during his nap time so we didn't get to stay super long before Dakota was done but I was so happy he was invited!

Dakota and super hero Tommy!!

Dakota is still going to physical therapy and swallow only every other week. His physical therapist is noticing his improvement in overall strength and has said we have had some of the best sessions ever recently. Swallow therapy we back tracked for a little bit cuz he went through a little phase where he wasn't as interested in eating...but we are getting back on track. He recently got introduced to peanut butter and now I think it is one of his favorite things!

I got to babysit my sweet friend Claudia's granddaughter 1 day for a couple of hours. I fed both of them at the same time and realized how far we still have to go. Dakota would take like 1 bite to her 10. We had fun though!

Dakota gets to bowl at physical therapy...


We are still not near where I thought we would be with getting the trach out. He does great with his cap on (which means he is breathing normally and not out of the trach) most of the time unless he starts crying really hard. But the biggest killer is that he is still needing suctioning too often. He has a super strong cough  but still for some reason can't seem to get it all out by himself. I don't really get it but I don't feel comfortable moving forward without him being able to not need suctioned. :( It is okay though. Having the trach does have it's benefits...we get respite care because of it (which is 40 hours of nursing a babysitter ;) ). We hardly use it but it is nice to have to go out on a couple dates a month or if we need to go somewhere during the day.

In January Dakota advanced from a sunbeam to a CTR 5 in primary at church. He even got his first CTR ring (which stands for Choose the Right). Not that he needs reminded to choose the right because he is perfect already...but I guess he can wear it as a reminder for his mom and dad! ;) We aren't nearly as good as him.

love that little hand!!

Things Dakota loves right now (in no particular order)...being held...especially standing up and walking around with him (it's a back breaker though if you do it for too long), tastes of all kinds, standing up (with help of course), riding the bus, school most of the time, crawling down his slide (therapy), rolling, getting fed through his g-tube, getting suctioned when he needs it, spinning around in a chair or when your holding him, laying on the kitchen counter and hitting my cups that are hanging (and trying to roll off the counter...gotta watch him), being outside, watching Toy Story (all 3), laying in his bed when he is tired, when mom and dad sings and dances in front of him, attention of any kind, friends, riding the Ranger, sledding, & that's about all that I can think of at the moment.

Oh and just being a cowboy!! ;)
So happy!!

This is emarassing mom!!!

Love those eyes!!

Don't look at me!!!

U still there?!


  1. Tessie, you guys are amazing, and WAY TO GO KOTA! He is so big and oh so handsome. Im coming up in a couple weeks and would love to come see you guys if its possible for you(and me). Depending on what my car situation is. He is so absolutely handsome, and we will continue to pray for you guys! Zach, what an amazing dad you are, and husband! LOVE YOU GUYS! - jen

  2. Thanks for this awesome update Tessie! He is doing so well! I love all these exciting steps forward and that he is happy. That is the best gift ever! You are doing such an amazing job with him! I loved seeing him at therapy with Shaun... and that ramp that he is rolling stuff down was made by my son for part of his Eagle Project. Cool!

  3. Tessie it was great to get the update on Dakota. What a great kid and amazing parents he has. You are an awesome mom Tessie and Zach you are an awesome dad! Hard to believe he will be in kindergarten. Funny how fast they grow up. Thinking of you and praying for you all. It was fun to see the cowboy pictures. He is one cute cowboy. I love his big eyes.......... Have a great weekend.

  4. I got all teary when I read that he controlled the music by pushing the button! That must have taken every ounce of energy. Good work! Also, when I read that he got invited to Tommy's party and that Tommy was so sweet to him--that melted my heart and I full on cried again. Dakota is surrounded by special spirits!! Keep going little man!

  5. Thanks for the update! He is such a cutie:) Loved the button story. Thanks for sharing.

  6. Hi, long time lurker :) with some experience in special education. A while back there was a boy in a classroom I worked in who had limited control over his hands/body and was non verbal. He would smile and give expressions for yes and no but no signing or oral communication. He was set up with a computer that he controlled with is nose! Bascially he got a little dot sticker put on his nose that controlled his mouse and the mouse responded to him and when he hovered over something for 3 seconds it 'clicked' it. He was able to communicate as well as do a lot of school work on the computer. He loved his computer and he loved talking through it. Might be something to look into through your districts special education program :). Another option for him (that you could do at home) is picture communication. The district I worked in used PECS ( with all of their non verbal students and it made a world of difference and cut out a lot of frustrations. They each had their own book of picture cues that they could use to communicate to use and we could set them put picture schedules for the day so they knew what to expect. At home you can print the pictures and then 'laminate' them with clear contact paper (any walmart type store in the kitchen section) and working on him communicating his needs/wants with pictures. Anyway just some thoughts :). Dakota looks so vibrant in these pictures, you guys are incredible parents, thank you for sharing your story with all of us it really is inspirational.

  7. Love your blog!! So glad I found it! :)
    x0, Ashley Hughes