Monday, April 11, 2011

Busy is an understatement

So like I always say...where has the time gone. I have wanted to sit down for a long time now and write down all that has been happening but I honestly don't have a spare second these days so like always, there is SO much to catch up on and so much I will forget to write...but here goes nothing!

First of all, we are home from the hospital!!!! Hallelujah (however you spell that) We got to come home on Tuesday which was MUCH needed for all of us! Dakota was so fussy in the hospital and I could just tell he did not want to be there. Since we have been home...I have never seen such a happier kid. He has seriously just been so much fun to be around...smiling, laughing, happy, and so content. This is the little boy I know!

Smiling playing with his the contraption his vision therapist made him.

Just another cute smile!

Second, and the thing that has taken up every spare second that I thought I had before is his new therapy program. We met with a company called NACD (National Association of Child Development) a few weeks ago. The founder of the program Bob Doman has so much knowledge and experience with brains and believes that anyone has the ability to function at a normal level and above if they are given the right stimulation. He works with kids of all levels from your average typical kid, to learning disabilities, to downe syndrome, to kids like Dakota. It doesn't matter where the child is at or what their abilities....he looks at the individual child and develops an individualized program for that child to help them reach their full potential. It was very interesting meeting with him and getting a fresh perspective. It felt so good to know that someone else who is a lot smarter then me :) also could see potential in Dakota and fully believes that he can walk and talk and do all those things that we want him to do so badly again.

The hard part about it all is that all of the therapy is on us. They give you everything you need to do it and teach you but then it is up to you to make it happen. So needless to say we are round the clock doing therapy with this boy. The main goals right now for Dakota are motor function, vision, and oral motor. The vision part in his brain was affected from the trauma. He still totally sees but his vision may be a little blurry and his eyes don't work perfectly together yet. It's nothing you can really tell by looking at him unless you are really trying to look for it. With Zach busy and working now most of the therapy rests on me. Luckily, we have some truly amazing selfless people that have so willingly volunteered to help me out since some of it can't be done without two people. I can't thank them enough for being willing to do this. It was very overwhelming the first week but I am starting to get the hang of things and don't have to stare at my notes every second anymore. Dakota actually enjoys it for the most part. Some of the physical stuff he doesn't love so much but he seems a lot more happier doing therapy then just hanging out.

His sweet glasses ("cool dudes" as we call them) that he wears a couple times a day to help his vision.

They make for a great peek-a-boo

We finished 40 treatments of the hyperbaric and are now on are three week break before starting another 40. It has been SO nice to have more time at home, especially with the new program but I know that the hyperbaric is a good thing that we feel good about so pretty soon we will be back on schedule heading up to Logan for another round. Depending on Zach's work I may be making the trips alone with Dakota and I may be the one in the chamber with the little guy. I'm a little nervous about that but we will see what happens.

I met with the preschool staff for kids with disabilities last week. When Dakota turns three he is eligible to start preschool which is in Corinne. They have kids at all levels there. As soon as the meeting began the tears just wanted to come. I did my best to hold them back so they didn't think I was a nutcase. I never imagined being in a meeting like this and to be quite honest I didn't like it. I want Dakota to be able to go to the preschool I chose for him not one that he qualifies for. I wanted them to be able to see my little Dakota running around, not going to school in a wheelchair and watching other kids play on the playground. This is one of the hardest parts of this all. Everything I had pictured and dreamed about for Dakota and our family no longer looks the same right now and it is hard. I'm not giving up the faith that one day it can but until then I am trying my best to make the best out of what we have been given. I saw this quote and I try and remind myself of it often..."Life doesn't have to be perfect to be wonderful." Our life definitely is nowhere near fact it is so funny to see the reaction on people's face who don't know us who find out that Zach went blind almost two years ago and then Dakota had a brain injury 4 months ago. They are always in awe and can't really believe that so much has happened to us not just in a lifetime but in our short 27 years of life. (We can't either) People always say that if you could trade other people trials that you most likely wouldn't do it...I'm pretty sure I would trade :)...anyone willing?! Just kidding. I have thought a lot about our situation. I have asked myself...if I had known before having Dakota or before marrying Zach that all of this would happen...would I still have gone through with it all...and the answer is YES!!! Because the reason it has been so extremely hard and painful, is because they have both brought me more joy then I have ever experienced and that is why it is so painful. I would never have known what true joy was or what real pain feels like without it is worth it. And I will keep trying to make this not so perfect life as wonderful as it can be!
We are still watching Dakota progress and are grateful for every little thing. He always seems to get more alert and attentive to me and I know there is so much in there that wants to come out more and more! Even the preschool staff we met with were very impressed with how alert he was...which made my day to hear them say that. In their words..."he is so alert, that is really good. Some kids with these injuries do really well." He comprehends a lot but the hard part is responding back with what he wants to do with his body tone. We can ask him where's mom or dad and he will start looking around until he finds us. We can ask him if he wants to do different things and he will give you a smile if he does. We can hold up two objects and ask him to look at which one he wants and he will look at them both and look at one longer. When you say "this one?" he gets a big smile like you got it! He is smiling and laughing like crazy these days and they are so much bigger then when he first started. They are closer to his real smile. He has started making facial expressions that are more like they were before the accident. The biggest one I noticed the other day was his sad face where he is about to cry but not wanting to cry. It was just like he used to make and it was so awesome to see.  He struggles with being able to move his body how he wants. He will just stare and smile at a toy I have to play with but when he tries to do something with it he just gets really stiff and rigid with his movements and can't do what he wants to do. I can't imagine how frustrating this probably is for him.
He is getting stronger with his head and trunk...lifting his head up even higher on his tummy and tries to lift up in his reclined car seat. He is getting better at getting his body in a good position to roll and just today rolled on his side from his back which is the hardest one. He does good from his side to back or tummy and from his tummy to back. His eyes are working better together in just these last few weeks. We started capping trials with his trach...which means placing a cap over it so he can't breath in or out of it and has to do it all like normal. You start off slow so so far we are just at ten minutes a couple times a day. He has done pretty well with it though and we hope that it will help him strengthen those muscles and hope to get the trach out in the near future. It still depends on his swallowing which we are working on those muscles too but the breathing and swallowing are codependant on each other. We are just loving him to pieces though and will not stop working and praying and doing EVERYTHING in are power to help him.

Holding his head up strong on his scooter.

His occupational therapist Pauline making him work!

And he still likes her in the end! :)

Thank you to all of you who are not giving up on him either...who are praying and thinking of him! You have no idea how much it means to us and to Dakota!


Your big boy potty is waiting for you!


  1. CUTEST boy around...What a STUD!! We Love you Dakota! :)

  2. His smiles are totally cute. I just wish I could give him a big ol squeeze right now! How we love Dakota and you guys!

    Go Dakota Go!

  3. Thanks for the updates. What a little trooper, his smiles are so cute! We still continue to pray for all three of you.

  4. I dont personally know you but I found your blog off the Shaws blog (who are our neighbors and friends). What an amazing person and an unbelievable mom you are! I have 3 boys and every time we read on Dylans blog my oldest 2 boys want to read "the little cowboys" blog (Dakotas.) He is the cutest little boy! You are touching our lives for the good even though we are strangers. I hug my boys even tighter and give them as many good night stories as they want and try to over look those crazy and naughty things little boys do! Thank you for being an inspiration and teaching me as a mom! Angie Kirby

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  6. Sooo happy Dakota's continuing to make improvements each day! Your faith and strength are inspiring and contagious! We will continue to keep you in our prayers and always look forward to your updates. :)

  7. Love your sweet outlook on life Tessie. I too love the statement "life doesn't have to be perfect, to be perfectly wonderful!" I read it years ago in a book called Marathon of Faith. It's the story of Rex and Janet Lee! It helped me through some hard times! If you would like to read it, I can get it to Vicki. Or email me You are a great example to me and my family. You have helped in more ways than you will ever know! We love all you sweet Friedli's and our hearts and prayers are with you always

  8. Tessie, your family is constantly in my thoughts and prayers. I love reading your blog because it always lifts my spirits. I appreciate that so very much. You are an example of true strength, courage and faith. Thank you.

  9. Saw Vicki at our ward's conference on Sunday and it reminded me I hadn't stopped by your blog to check on Dakota's progress lately. I'm so happy to see his improvements each time I get on your blog! I'm rooting for you guys!!! You all are amazing!