Sunday, March 13, 2011


Where have the days gone? Thank you to cute Shaylee Allred (one of my old primary girls who is now a beautiful young woman) for the cute texts asking me if I have updated my blog. She is a great reminder of what a slacker I have been at keeping up with Dakota's progress and letting all of you out there who are praying and keeping the faith know how those prayers are working. So thanks Shaylee and I will try to do better.

So to answer the question of where the days have gone...I thought I should document a day in the life of the Friedli's since even when my sisters came up to visit they had no idea what are days are like and what we do. I'm sure many of you are wondering what in the world could they be doing in that house all day long...well let me tell you...there is never a dull moment.

We are still working on any type of consistency we can get with this boy...especially in the nights. He is sleeping incredibly better then he did in the hospital but we still never know what the night will bring and that is probably one of the hardest things. I think we average 4 hours of sleep at night and not straight sleeping with all of the beeps, suctioning, feedings and meds (when we don't have a nurse), and of course wake times. I'm not complaining because over the last few weeks he has started to have some of the best nights he has EVER had since this all happened. These nights he will sleep from about 9p.m. to 7-9 a.m. These nights I can't thank God enough for not only letting Dakota be so peaceful and get the rest he needs but also Zach and I. These nights are becoming more frequent with averaging 2-3 a week right now. The other nights are just a mix of whatever he is wanting to do. Some nights he won't go to sleep til midnight, others he will just wake up at midnight and stay up for 3-4 hours. Some nights he may wake up twice for a couple hours, some mornings he will just decide to wake up at 4 or 5. You just never know. Right when we think there is a pattern he switches it up on us. So now whenever one of us tries to say, " I wonder if or I think..." we just cut each other and say..."you don't know so don't even try."

Once morning comes, whenever it may be, we go with it. Usually starts with some one on one with mom or dad of cuddling, reading, or just talking while he gets his feed. He gets his feeds 4 times a day about 5 hours apart. We have gotten creative with how we feed him since we didn't want an IV pole hanging out all around are house (we have enough medical equipment as it is these days).
Are fans have made perfect bag hangers whether we are feeding him in the living room, dining room, or are bedroom. (He does have a pole in his room for other stuff)

On top of the feedings he has meds scheduled 6 times throughout the day and night. (This has gone down so much in the past couple months. When we first got home from the hospital he had a med due almost every hour or two and it was all I could just to keep up on those.)


Daddy giving the meds

Once the feeding is done and his tummy is settled we jump right into are day. Start out with a little massage therapy as we get all dressed and ready for the day...can't forget to put on his essential oils (yes we are into those). Getting ready for the day includes cleaning the trach and g-tube sight and of course all the other typical things like brushing teeth, washing face, doing the fohawk (hair), and putting on the clothes. It all takes longer then it used to when you don't have as much cooperation.

After he is ready the therapy begins whether it is me or a therapist or both. WE have finally got a good schedule going with therapy and it has been great to not have to do it ALL on our own, even though we still do things all throughout the day. It is nice to have others help out. Right now he is receiving physical therapy 3 times a week, occupational 2 times a week, and we are still working on the speech therapy being consistent. Right now it has only been once or twice a month but hopefully soon it will be a couple times a week. Poor kid doesn't get a break between the therapists and Zach and I but he is continually improving and the therapists are excited about the progress they are continuing to see, which excites me as well. Of course I am always wanting more and faster but I am working on being patient.

Me making him sit. He is getting a lot stronger with his head and trunk holding them longer and better. I am just holding his hands on the ground and he is keeping his trunk and head up on his own. He does best when we have a distraction to keep him happy and occupied. If I'm alone I use the T.V. which he has gotten very interested in again or toys.

Zach was being his entertainment while the therapist was here. What a cute dad Dakota has.

Besides his head and trunk control, he has started rolling pretty good from his side to back and even from his front to back. He is tolerating the therapy better and even smiling and laughing during it. His hands are getting so much more open and loose. (He used to keep them in a fist all the time) Now he is opening his hands, putting his pointer finger out, and just moving his fingers more. He has started to try harder to reach for things although his movements are not coordinated at all. If we put toys next to him laying down he just stares at them and starts moving and hitting them. I can see it in his little face and body how much he just wants to play and do what he used to do but his body just won't let him.

The biggest difference we have seen in him over these last couple weeks and especially last few days is his alertness and awareness. He is constantly looking around at whatever is going on in the room, whoever walks in, whoever talks, whatever toy we have, whatever it is he is paying attention to it and watching it. He is smiling and laughing like crazy these days. All you have to do is look at him funny and he smiles and may give you a little chuckle. He seems to me to be more like himself in ways...more happy, more aware, and just more Dakota. I just wish he could tell me what he was thinking or wanting and do what he wants his little body to do. I'm still waiting for that day. I know he has it in him.

He got a couple new things since last post. One of them is this stander that lets him stand and bare his weight, letting his body feel it.

He is not a huge fan of it so I have to be pretty entertaining while he is in it to keep him happy. He thinks I'm a pretty good dancer. :)

The most exciting thing that is new is he got a new valve that you put on his trach that allows him to breath in through the trach but not out. So he has to breath out of his mouth and nose. The cool part about this is the air now passes through his vocal cords so it lets him make sounds and cry out loud which he is loving and so are we.

It doesn't look much different but is just a cover on the end.

Before we got this he would make sounds but it was a lot harder and they were few and far between. When they put it on in the doctor's office I said, "Dakota now you can talk. It's easy now. Say aaaaaah." He sat there for a minute and then quietly did it and just got a cute smile on his face and did it again. He was pretty excited about it and so proud of himself. It's fun to see him get happy and excited about things. When he rolls over and we clap for him he just smiles like "Yup, I did it. I am a cool dude." I LOVE IT! He did so well at the doctor's with the valve on that instead of working him into it like they usually do they just wanted him to wear it all day and only take it off when he sleeps. This has been so great not only because we get to hear him talk but it puts pressure on his throat and instead of his spit dripping into his lungs and having constant secretions coming out his trach he just drools out his mouth and nose. That probably doesn't sound that great but it is MUCH better then going in his lungs and having to get suctioned and wiped constantly out his trach.

After lots of therapy and playing we get ready and head out to Logan in the late afternoon for his hyperbaric treatments. This usually takes a total of  3 hours with the driving and treatment. He only has 3 more of his 30 left and then we will decide what to do from there. He has definitely improved since we started but it is hard to know if it is just Dakota and his brain healing or if it is the hyperbaric treatments. We feel that once he started the treatments we started to see improvements quicker but it is still hard to tell. Both the doctor and us don't really know and really probably won't ever know for sure but it is hard to stop if it is. So we might take a short break (which is what they typically do) and start again but we will see.

Once we get home we do a little more therapy and start are evening ritual of a lavender enhanced bath (to induce that sleep :) ), cleaning the trach and g-tube for the second time, putting the essential oils on, brushing, jammies, etc.

Check out this sweet bath chair that his Poppy built for him. I don't know what we would do without it. Thanks Poppy!

After we are all ready for bed it is cuddle time on the giant lovesac that we got just for Dakota. We read a couple books, sing songs, say are prayers together and try and get this little boy to sleep. Sometimes it takes 20 min, sometimes hour, sometimes more. Before the accident we would just lay him in bed awake and he would go to bed all on his is a completely different story now. It is more of an art. He has to not just fall asleep but be in the perfect state of sleep so that when we take him to his bed he doesn't wake up or going to bed is a no go. Trust me it has taken a lot of practice and perfection to get it down and even still we have nights where it takes several tries before he is in bed for the night (or until he decides to wake up :) ).

Once in bed Zach and I take a deep breath, give him his meds, clean up are mess for the day and then try and spend a little much needed time together. Having a child with a disability is a lot of work. So if you know someone that has a child with a disability give them a pat on the back or something. Before this I did not give enough credit to all of those parents out there who go through this. This has opened my eyes so much. When I see a child with a disability I see things completely different. I look within that child and wonder what they are really like, if I could take that disability away what would I see. I look at that parent with admiration and love because I know how hard it is and the sacrifices that they are making. I think the hardest part in all of this is all the people that didn't know Dakota before the accident...when they see Dakota they see a boy with a disability. They can't see the Dakota that is inside and what an AMAZING sweet, happy, fun, exciting boy that he is and that is hard. I think most people think that he has always been like that and then when they find out he just had the accident you see a change come over them. It's hard but I continue to pray with faith that everyone will see that little boy again. I know he is in there fighting to come out and I will keep fighting for him and giving him every chance that he deserves, no matter what it takes.

I haven't given up my faith and hope that Dakota can get better. There are times when I start to waiver and wonder but I am grateful for a loving Heavenly Father who understands and helps make up for my weakness. I read in Mark 9:14-29 today about the dad who brought his son with a "dumb spirit" to Christ to be healed and Christ said to him, "If thou canst believe, all things are possible to him that believeth." and the father said, "Lord, I believe; help thou mine unbelief." I feel like this father...I believe with all my heart that this is possible and that all things are through him but as time passes, my faith wants to waiver, but I am grateful for a loving Christ who will help me through my imperfections and my weakness and doesn't dwell on them but seeks to take my hand and help me through. I know that if it is God's will, Dakota will be healed. I pray that it is and thank all of you for your continued faith and prayers. As always we need them.

I'm starting to get a little nervous for these upcoming months. For one are nursing hours got cut to 24 hours, so instead of having a nurse for 8 hours a night 7 days a week we have a nurse for 6 hours, 4 nights a week. I am grateful for what we get but now it is up to Zach and I to get up in the night to suction, turn the oxygen on, give him the meds, and give him his feed. We can do it, we have had several nights where the nurse has been sick and couldn't come but it is hard. On top of that Zach is starting up his landscaping business again and is starting his aerating next week. I know someone has to work around here to pay the bills but it is sure nice to have him home all winter, especially through all of this. I know I can do it without him...he has been starting to leave and work on things with his inventions and landscaping these last couple weeks...and I have survived but it is sure nice to have his extra set of hands at my beckon call when I need them. He is such a hard worker though and despite his limitations with his eyesight he has never quite working hard to be the best provider, husband, and dad that he is for our family. He has a couple of inventions (tools) that he started working really hard on...figuring out all the ins and outs of patents, looking for manufacturers, shipping, etc. that he is continuing to pursue. It is amazing what he is capable of even without a perfect set of eyes. Dakota and I sure will miss having him home all day though.

Even just to snuggle with!

Last but not least...thanks to all of you for your continued comments, words of encouragement, support, love, prayers, and faith!!!!
D&C 6:36 "Look unto me in every thought; doubt not, fear not."


Your truck is waiting for you to feed him more oatmeal! He is SOOO hungry! :)


  1. Tessie thank you for taking the time to share your life and Dakota's progress. I can see and feel (even just through the blog) how determined Dakota is. Congratulations Dakota for sitting, laughing, using the new trach cover,relaxed hands and arms etc!!! We fast and pray for your continued healing in small and great steps. Tessie I want you to know that you can text or call me anytime when there is something I can do to help.

  2. Tess thanks for the post! I love all the pics and great news. He is an amazing little boy people will see that no matter what! You guys continue to serve him and we are so grateful to you for your faith and examples. I feel like a broken record when I leave comments but we (Steve and I) always feel the same about you guys and your endurance, faith, and testimonies. Dakota is a sweet spirit with an amazing purpose, you guys are the rocks he needs to get through this. Thanks for taking the time to post we all love to hear and see how he is doing. We are so excited about the improvements! Keep it up Dakota!

  3. Woot Woot Dakota! How exciting to hear him laugh! He is doing lots of things and making progess. Thank you for posting updates. We think and pray for you guys all the time. What a cute family and I know with your and zach's genes, Dakota for sure is one determined little boy! Keep it up Dakota!

  4. Tess, thanks soOoo much for the post. We are continually thinking about you guys and know how busy you are, so it's great when you do get a free minute to update us. I LOVE the pictures and am so glad he is contiually making improvements each and every day. Dakota is a sweet spirit and is so lucky he has the BEST parents to get him through this! We LOVE and miss you guys so much and know Dakota can pull through this. He is a tough little guy and continues to show us each and every post! Keep it up Dakota, we love you buddy!

  5. I am so glad you updated as well. I love reading about every new thing he is re-learning and all of the progress he is making. You are such a good mom. Good luck to Zach heading back to work and good luck to you doing so much more on your own! We are still praying for and thinking about you all. I love the picture you posted at the end. ☺

  6. This might seem strange...I don't know you and have never met you before. I actually happened across your blog by accident. I was so touched by the story of your son and how brave and strong you seem to be throughout it that I felt compelled to write and let you know he'll have a few more prayers coming his way from my family as well.

  7. You don't know me but I have been blog stalking you. I saw your blog on one of my friends (don't remember which, I went to school with Zach) I hope that is ok. I love hearing your updates and news. You have humbled me so much and made my testimony grow so much. You are amazing and the love you have for your son is truly amazing. I can't tell you enough what an example you are to everyone. I hope you don't mind me peeking in. It sounds creepy but I assure I'm not :) I feel invested in his story and progress and pray for you gus!!!

  8. We're rooting for Dakota!! Such a sweet little guy! We read your posts as a family and the kids love to see new pictures of him. Sounds like he is working so hard! We cling to every post and look forward to reading about his progress! We continue to pray for your family.

  9. We are so glad to hear about his progress. Every time I read your post I am amazed at the strength that all three of you have. My Aunt was hit by a drunk driver right before she was going to get married a long time ago. She spent the next 24 years of her life a vegetable. I watched my Grandma take care of her all that time since at this point my Grandpa had passed away. I always wondered what my Aunt was really like. My Grandma always amazed me, she had so much patience. I look at you with the same respect and admiration as I do my Grandma. We continue to pray for you and Dakota and love the updates.

  10. Tessie once again I have tears in my eyes!!! Everytime I read ur blog I feel so guilty for everyday complaining how bored I am and how much my kids drive me crazy and I wish they would just sit and watch tv for a while to give me a break! I have no room to complain!!! U seriously amaze me everytime I read your blog and u make me want to be a better person! I didn't know your husband had eye problems?! He sounds so amazing even with his eye sight not being 100%! you and your family are still in my thoughts and prayers and I pray that Dakota can keep recovering and fast:) don't lose faith and stay strong Dakota needs u more then ever!!:) those pics are so cute but I will say my heart breaks when I see before pics of him playing and being his cute little self:) I will keep praying for you guys and keep updating I love checking in on you guys!!

  11. Tessie,
    We sure love you and your sweet family! Give that baby boy a squeeze from me! Thanks for the updates - it sure is wonderful to hear that there's constant progress throughout these long months. You're always in our thoughts and prayers!

  12. Thanks for the update Tessie! We look forward to them! I just wrote you a long comment and it somehow wouldn't post. So in a nutshell, we love you and are SO thankful for your example!

  13. Hey we are so glad to hear the progress. You are continually in our thoughts and prayers and know you guys are the strongest people I know. We always are thinking of you and are here for you if you need anything at all even a listening ear. Dakota you are one tough little buddy and so amazing you keep fighting. Tough cowboys never give up so we know you can make it. We love you guys so much and love to hear good news. We will continue to pray and thank you for the examples you set.

  14. Tessie, You and your sweet family have been in our prayers as well! Thank you for sharing your experience. It is wonderful to hear the progress your little guy is making. You are such an example to me. Love you!

  15. Tessie, Zach and Dakota,

    We love you guys. It means so much to me to have the updates especially because we don't live close. You guys are great examples to all of us. Gooooo Dakota! I am happy to hear about his improvements. You'll continue to be our our prayers, fasts and thoughts. Love you!

  16. Thank you for updating Tessie. I enjoy seeing Dakota's little smile in pictures! I am excited that you use essential oils. I just got into them myself and I really believe they work. You are inspiring and everytime I read your blog, especially after having a hard day with my kids, it makes me realize I am taking them for granted. I cry every time and vow to be a better mother. Thank you!

  17. Tessie
    I came across this quote and wanted to share it with you.
    "God gave this child for you to guide, To love, to walk through life beside; A little child so full of charms to fill a pair of loving arms. God picked you out because he knew how safe his child would be with you!"
    You are doing an amazing job! My prayers are with you.

  18. The picture of Dakota feeding his truck just makes me cry - how sweet! It was so nice to meet you guys tonight at the dinner - you are a most deserving family and it is an honor to raise funds for you guys. Let me know if you ever need to talk - we'll be praying for you guys - just keep going! Love, Carol Huff

  19. I have so many mixed emotions reading this post. I was just guided to your blog, my husband and I lost our only child in July due to a drowning accident. She was 18 months. I remember the doctor telling us shortly after we arrived at the hospital that our lives had just changed forever whether she lived or not. I remember praying for an outcome similar to yours, but we took a different path.

    My heart is so incredibly happy that you get to hold him, feel him, love him, and experience life with him. Something we drastically miss. But at the same time I know you must miss that little active boy. All I know is there is a plan for each and everyone of us and obviously your little Dakota has a mission here on earth.

    The motto I've clung to is "I can do hard things." Remember that. You're doing hard things, and I know you have one very grateful little boy. Hang in there.

    The Sullengers

  20. Tessie {&Zach}

    I just wanted to let you know how touched I was tonight to see how many people came out to your parents house to show their support for Dakota. He has a lot of people rooting and praying for him. It was so good to see many old Gilbert faces.

    You guys are doing an excellent job with your little boy. It has been neat to read Dakota's progress these past few months. We will continue to keep him in our prayers.

    Todd & Sandee Prince {Payne}

  21. Hi my name is Heather Sanders. I just found out about your blog from someone else I know. Anyway, I have a one year old son with a trach and g-tube. Our son was born with a very rare syndrome. I know our sons and circumstances are a little bit different, but I understand having a child with special needs. And how it is having a child with a trach and g-tube. I live in Syracuse, Ut. I'm not sure exactly where you live, but if you ever need someone who can relate to the stresses of what you're going through, I'd love to meet you. Feel free to e-mail me at Praying for your sweet boy and you and your husband.


  22. I was humbled to attend the BBQ dinner that your parents hosted last weekend. I was in your sister, Annie's ward. Though I don't know you personally, my family is praying for your continued strength and Dakota's healing. Thank you for your testimony and example. It has helped strengthen my resolve to be a better mother and person. Dakota is a gorgeous boy, so full of light. No matter the outcome, he is lucky to have such angel parents and is an amazing child of God. I hope you are able to feel the love and prayers of SO MANY concerned friends (and strangers) alike. P.S. LOVE his cute smile (and him feeding the trucks!)

  23. You are such an amazing person! My mom works over at the CVSH and runs the hyperbaric chamber, she told me about your little boy and it broke my heart, I'm happy to hear he has been improving! Even though we are strangers you're in our prayers!

  24. Wow, what an incredible family! Our thoughts and prayers are with you and your sweet boy. You don't know me but I feel like I need to share this with you. My sister just had her little boy in the NICU and on one of her sleepless nights she came across this blog. She told me it really helped her. I know you might not have time to ever sit down and read but I think this blog will be able to help, they might be the only people who can relate to what you are going through. The blog is On the right side you can read about Preslee's story. I really loved #17 about "I can do hard things." She is an inspiration to me and so are you. Thanks for sharing your story and you have made me want to be a better mother. Wishing you and your little guy the very best.

  25. I FOUND YOUR BLOG FROM SHAWNI'S "71 TOES", I'M A GOODMAN, RECOGNIZED YOUR MOM who is related to my husband, AND SISTER, DAWN who used to be my neighbor...