Friday, February 18, 2011

Baby Steps

Things are still happening over here in the Friedli household that give us hope and courage to keep going. Although they are small baby steps, we are still excited to see continued progress.

We started doing hyperbaric chamber treatments for Dakota up at Cache Valley Specialty Hospital in Logan on February 1st. This is pretty much a chamber that you go in and it gives you pressurized oxygen for a sustained amount of time. I don't know ALL of the scientific information behind's a little over my head...but basically the pressurized oxygen gets into the bloodstream to help heal damaged tissue. They use it most often to heal wounds. There has not been enough research done to know for a surety whether or not it helps in healing the brain but there have been success stories out there so we thought why not. We decided to look into this because we had heard a couple people mention it in the hospital, then as we were home one of his occupational therapists mentioned doing it, and it is also something that Zach had done for his eyes when he saw the doctor in Texas. So, we started searching around for places near here that do it and we met with the doctor up at Cache Valley and she and all of the people that work there were amazing. They of course couldn't guarantee that it would help Dakota but theoretically what it does makes sense that it could help in his healing process. Just like any parent out there would do...we got to give him every possible chance so we decided to go for it. Because insurance doesn't cover hyperbaric treatment for brain damage...we were a little nervous about the cost but the people at the hospital were so kind and they were very willing to work it out with us and made it affordable for us to pay for the treatments. The CEO of the hospital (who had just met us for the first time) told us that they were all hoping and praying that this would be the answer for Dakota. They are ALL rooting for him and it is so sweet! He goes in the chamber Monday through Friday for one hour a day. It is a good three hour round trip for us each day but it is nice to get out of the house for a bit. Zach goes in there with him because he can't go alone because he is so little and with the trach and everything. When he sleeps through the treatment it is a great time for the both of them but if he is awake during it, it is not so fun for either of them. Dakota gets pretty agitated in there and moves it gets pretty warm in there so by the end he is a sweaty, unhappy boy...and so is his father. Everyone asks us if we have seen improvements with it but it is hard to say. Have we seen improvements? Yes. What we don't know is if these improvements are just improvements Dakota is making on his own or due to the hyperbaric. We feel that we have seen quicker improvements since we started but it is still so hard to tell. But we will just keep doing them because it isn't hurting anything but only helping are chances. They recommended thirty treatments for is his 14th so we are about half way there. Please keep Dakota and these treatment in your prayers. Ultimately it is still up to the big man upstairs but we have to do ALL that we can do and he will make up the rest, so that's what we are doing!

Before he could start the treatments he had to get tubes put in his ears because the pressure in the chamber could hurt his ears and burst his eardrums. So here he is bright and early waiting to get them put in. He did great!

First time in the chamber...did well.

So tired!

Some of the improvements that we have seen have been with his neck. If you haven't noticed from previous pictures, Dakota has since being at Primary Children's favored turning his head to the left side. It used to take all we had to turn his head to the middle or right and as soon as we would let go it would go right back over. Gradually he started to keep it in the middle longer when you turned it and lately this last couple of weeks he has started turning his head on his own to the middle and right and keeping it there. He will follow you turning his head a lot better. He has also been holding his head up stronger for longer periods of time. It helps if we put the T.V. on as a distraction and he will hold it up sitting up (with me supporting his trunk) for several minutes without even falling forward. His eyes are tracking even better and we have begun to see more purposeful movements with his arms. One of are favorites that he just started a few days ago is Zach will hold up his fist in front of Dakota and say, "give me knuckles" Dakota will look at his hand, smile and with all of his might slowly lift his arm at the elbow straight up (he always has a fist so that isn't an issue :) ) and Zach will pound his fist. He smiles and gets pretty proud of himself.

He just got this new chair this week that lets him sit up with a tray for toys.

Just hanging out.

Happy guy

The first time I put the tray on with nothing on it he just sat there. I went and got a few toys and put a ball on there. All of the sudden he got so excited and moving his arms. He stared at the ball for awhile and then very slowly started moving his arm to the ball and bumping it with his arm. You know that it is purposeful movement when he is focusing on what he is doing. It was really exciting to see! His movements are definitely not very coordinated and we don't always get consistency but you can tell he is trying.

We are finally getting things organized with all of the therapists and this is exciting. It has taken so long to get all of their assessments done and get things moving but I feel like we are finally on track and starting to get scheduled visits. He gets therapies from Early Intervention and also a company CNS. We had our goal setting meeting with early intervention and it had been a few weeks since some of the therapists had done their assessments with Dakota. They were all surprised how much better he was doing since they had last seen him a few weeks ago and were talking about what great progress he is making already. This was so good to hear from someone else who knows what they are talking about. As we are around him every day, we notice changes but I think that it is harder for us. Kind of like watching a newborn baby. They change so fast but when you are with them every day you don't see it as much as other people. It was definitely exciting to know that they were excited about his progress and changes as well. We just hope and pray that they keep coming!

He finally got his new Mickey button for his g-tube (what he gets fed through).

It started out looking like this with poor stitches and the works.

After a few months changed to this.

And now looks like this. It has been so much nicer and easier for all of us.

The last couple weeks we have had issues with him throwing up and the last two nights have been horrible. Like I said before, if it is not one thing...there is always another. They think he may just have some viral thing and are going to start some antibiotics today to hopefully help. I feel so bad for the little guy and he definitely doesn't need to deal with this in the midst of all else he is being faced with. Luckily he is a tough boy and he keeps on fighting.

I had an epiphany the other day as I was running on my treadmill. (I don't get to run very often anymore but when I do it is definitely therapeutic for me). I hate to admit this but there are times when it gets really hard and I don't think I can get through another day. Unfortunately although I know I shouldn't think this I find myself wondering, Why me? Why my baby? I sometimes want to throw myself a little pity party and just cry. I know there is a good reason we are going through so much and my faith in God and his eternal plan for us all gives me comfort in knowing that even though I don't understand everything right now, one day I will. I know that despite this major trial and tribulation in our lives He still loves me and He is only doing what is best for me. I read a talk while in the hospital that stated if we could see the eternal perspective of are lives as God sees it, we would never ask for anything that is contrary to his plan. It's hard to believe that if I understood it all I wouldn't ask that God would not let this happen to my son, but I know that it is true. But even though I know ALL of this with all my heart, those hard days come and I find myself asking why me? As I was running the other day this old saying from are assistant coach Coach Miller at SDSU popped into my mind, "YOU NEED TO HAVE HARD BARK." Now I know that sounds weird and he had a lot of weird sayings but this one hit home. It pretty much just means you have to be tough...hard bark. Now I used to think that I had pretty hard bark...I thought I was pretty tough...but the Lord has humbled me and made me realize I'm not as tough as I think. I need His help more then ever. As I thought of that I kind of kicked myself in the butt and decided I needed to quite feeling sorry for myself and my situation and be tough. Dakota needs me more then ever right now and if he is going to get any better he needs his mom to be strong for him. I don't know what the Lord has in store for us but I feel like Dakota has a great purpose in this life and he was preserved for a reason. The Lord needs me to physically be the hands that help strengthen and help heal him because he can't physically do it. I need to do my part and he will do the rest. So I am committed now more then ever before to work my tail off for this kid...sleep or no sleep...because he needs me.

Making him stand up.

Such a bog boy. When my niece Trai (4 yrs old) saw him stand like this she said, "He looks like he did when he was awake." She is a cutie...keep praying Trai that he can "wake up."

My cute niece and all my sisters (even my newest sister...Heather) flew up for a night to be with me for my 27th birthday (I know I am getting old...go ahead and say it Beau). I've said it before, and I'll say it again...I have the VERY BEST sisters in the whole world!!!! Our house was not the most exciting place to we have to be so cautious around our little Dakota but it was SO good to have them here to laugh with and to cry with. They always know just how to cheer me up! :)

With some ice cream of course!!! This was of course after a huge meal at Texas Roadhouse...we always make room for ice cream though! Heather had self control though. :)

Waiting at Texas Roadhouse. Zach was such a great dad and stayed home with Dakota so we could have a night out. It was much needed and luckily Dakota was a good boy for his daddy! Thanks Zach!!

They made Heather and I sit on the saddle to give us a birthday yee-haw! A little embarrassing but they did say we got the loudest yee-haw they have ever heard. :)

Reading a book with Aunt Shana and Trai

Cuddling with Aunt Dawn

Talking with Aunt Katie

Snuggles with Aunt Shana

Me and Dawn

Dakota and Trai...she LOVED to hold Kota on the bean bag...even though he seems to be about as big as her these days. He has definitely chunked up and grown a lot in the last bit. Sometimes I'm afraid his double chin is gonna cover up his trach and he won't breath.

Annie and Trai got to stay an extra couple days to watch their sister-in-law in a Annie went up to Logan with me and we got pedicures while Zach and Dakota were in the chamber. It was great...especially the company!

Thanks so much to my AMAZING sisters for taking the time to be with me. I love you SO much!
Thanks to ALL of you out there who despite the months that have passed continue to keep Dakota in your thoughts and prayers. We aren't giving up hope and continue to rely on the strength and help of all of you and especially our loving Heavenly Father!!


And I'll let you sneak ALL the candy you want! :)


  1. Once again, your post brings me to tears. I think even the littlest of steps are awesome! Every little baby step counts, you're moving in the right directions.
    Thanks for sharing your Testimony, it is always so touching to hear. I have never gone through anything as life changing as you have. But in what I consider a small trial in my life last year, I asked "why me?" And looking back, I'm still not sure. It's easy to say now, but I'd never trade what I went through for anything. (Vicki can fill you in) It makes me more appreciative for the small things now. The part of being the Lord's physical hands here on earth, is such a great way to explain. I think we all need to be His hands here.
    Keep up the Faith, you guys are amazing! I wish there was more we could do. Out little ones don't let a prayer be said without asking for a Blessing to help Dakota feel better. I pray for you all!

  2. Now that I think of it, I'm sure you have no idea who I am. Just some crazy preschool mom, who feels like I know you guys through Vicki!

  3. It's so good to hear the he Is progressing! You are a wonderful mom and one of the strongest people I know. Remeber it's okay to cry. We continue to pray for your family everyday. I wish there was more we could do. I'm so happy you were able to be Pampered a little bit for your birthday. Sisters are the best! Let us know if you need help with anything at all! Keep on fighting Dakota we know you can do it!!

  4. Tessie! It makes me so happy to hear that Dakota is progressing!! Praying for Dakota and you and Zach has seriously brought our little family closer and I think has made a huge impact on Kynlee, she honestly looks forward to having prayer and knows that we just automatically pray for you guys! I think she thinks you're family :)! We love you tons!

  5. Keep up the fight. I am so happy to hear about the progress. I tried oxygen treatments as well, I got my best result from B-12 injections. My friend is a fan of stem-cell therapy. She has put together a fundraising site for her daughter, they travel to Mexico for treatments. Here is her website, it might be filled with some good information and links for you. as well as
    They have the most lovely family and are a real inspiration to me.

  6. I'm almost embarassed to say it, but my boys ALWAYS remember Dakota in their prays and I find myself rushing through them to move on to the next activity and forget some of the important things:) Thanks for the updates and keep fighting Dakoto!!!

  7. Oh Tessie! Dakota is doing SO GOOD! The knuckles sotry was so cute. We'll definitely keep praying for you guys. Thanks for the updates. We miss you guys and send our love and prayers your way.

    Stay tough Dakota!

  8. It's so great to hear of all the improvements Dakota is making! And I'm so glad that your sisters came to visit for your birthday and that you had such a good time. You deserve a happy break. My heart goes out to you. I am amazed by your strength and your ability to get through the tough days. I keep thinking of your blog entry where Dakota sang: “Jesus wants to help you. Jesus wants to help you. He can help you.” I think he was singing this just for you. Notice that he didn't sing "Jesus wants to help me" - he sang "Jesus wants to help you". Even the real words "Jesus wants me for a Sunbeam" say me, not you. I think somehow he knew what was ahead and he wanted you to know and remember this. So everytime you're feeling down, think of little Dakota saying "Mom, Jesus wants to help you. He can help you."

  9. HI Tessie,
    You don't know me,but you know my sister, Jessie Loosli! She has told me about your family,and I have been following your blog ever since. I just wanted to let you know that you are an amazing example of faith and letting the Lord's will happen! I also wanted to let you know that as an outsider I can see a lot of progress in Dakota just from your blog posts!!! I hope you don't mind me sharing this with you, but I see the same strength in you that is in Paul in 2 Corithians 13:8-10. Paul has asked the Lord to remove his infirmities (trials) and the Lord's response is no, and so Paul realizes that the Lord's power is what makes his trials his strength's. He uses the word weakness,and infirnities but I replaced it with trials!! It brings me comfort on hard days and I hope that it can for you! Just remember that Christ has felt Dakota's trials and yours and is ALWAYS there!! We are praying for you all the way in North Carolina.
    Love, Nikki Ward

  10. Tessie you guys are amazing parents and such great examples to us! Like Natalie said things have changed for the better in our little family, things that were forgotten and overlooked sometimes are now a main priority. Deacon loves to pray for kota and we love to pray for him too! We have grown closer as a family.

    Mandy is right it's ok to cry. And if it's not then all of us (Natalie, Janelle, Heidi, and I) are all in trouble we had a nice little cry together this week end thinking and talking about you guys! Mostly how proud we are to be your friends, and how blessed we are to learn from your amazing work and testimonies. It truly is an amazing work your are doing for our Heavenly Father.

    It's also good to hear you do get to run sometimes. I was hoping you were able to do that every once in a while. There is nothing that can relieve stress like a good hard run. . . well maybe some ice cream!

    We are sooooo very excited to hear of his improvements and the pictures are so fun to see him smiling and doing all those things.The picture of Zach and Dakota asleep in the chamber is so priceless! We love you guys and are continuing to pray for you! Thanks for your great examples.
    Keep it up Dakota! We are rooting for you!

  11. Tessie & Zach-
    I know that I never comment but I have to this time! I can't believe how incredible the two of you are, and the strength of your families as well! Even the tiny improvements that you share with us are such a relief(even to us). I have to admit, Kamdyn and I were saying prayers last night and I was in a bit of a rush. I forgot to include you three and your families. As I finished she lifted her head and said, "mom say it again, you didn't bless Dakota and Zach and Tessie to heal." It was a blessing to me that even though she may not thoroughly understand, she knows that Heavenly Father will Bless and help you guys and your families! We love you guys so much, and hope you continue to be strengthened! And - I can't help but laugh to see pictures of Logan, and to hear of you going there every day! If you guys are up there and ever need ANYTHING, my parents and family would LOVE to help! So just yell, and they'll run! I would to if I were there:)

    Love you guys!

  12. Hello Zach, Tessie and Dakota!! I am one of Heathers friends from Duchesne. We have watched and read all the progresses of Dakota..and I need to say that he is looking so great! I can see an improvement ~ just through the pictures. And you are right Tessie..Heavenly Father does love you all! and our Savior Jesus Christ sees every tear that is shed..he knows what has caused that tear and knows most importantly how to heal you all, both spiritually and physically. You are all awesome! I am greatful for the examples of goodness that have come from just reading this blog. We pray for your family and know without a doubt, that you are being carefully watched over by angels. Keep smiling. Angella

  13. Hi Tessie,
    I've spent the last hour catching up on your blog. I was recently contacted to participate in the silent auction your mom is holding and will be glad to donate. My prayers are lifted up and my heart aches for Dakota's recovery.

    I would be honored to participate in the auction.

    With love and prayers,

  14. Tess, you don't know me, my daugter was in Teacher Vicki's preschool class last year (Brylee) her and Dakota were best buds! Your posts are so special! We pray for Dakota, or as Brylee calls him Koda, every single night! Stay positive, it looks like he's doing great. Anyway, I just wanted you to know we love and are thinking about you guys always!

  15. Once again, your posts bring tears to my eyes! We are so glad he is continually making progress each and every day. We are continually strenghtened by your examples and testimony and we look forward to praying for you each and every day as a family. Like Jord said, we have a great conversation this past weekend and feel SO BLESSED to have you guys in our lives.. we LOVE you all SO MUCH and know that Dakota can pull through this. You guys are the greatest parents and he is so lucky to have you! I am so glad you were able to get out and have some fun with your sisters for your birthday-- they are the greatest and you are lucky to have so many!! :) Thanks again for all the updates, we look forward to reading them and please let us know when we can help with something-- we are dying to!! :) Love ya guys!

  16. You amaze me! I love your optimism and outlook on such a difficult situation. I know you don't always feel strong, but as an outsider, I can't imagine being as strong and stalwart as you are during this. You truly are a woman of faith. Don't be ashamed of your tears either. This is my favorite quote, that I try to remember often when I cry

    “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.”

    Thank you for inspiring all of us to be better people :-)

  17. You don't know me but, my mother in-law told me about your blog. I just want you to know that you are all in my prayers! Hang in there, and it's ok to cry!

  18. What a blessed little boy you have to have such wonderful, loving parents. Your family is an inspiration. I will pray for you and think of your family often! God bless!

  19. Tessie,
    You are such an inspiration and such an amazing mother and wife. Thank you for sharing your testimony. I cry every time I read a new post from you! We are always including your family in our prayers. You are an incredible example of having faith in the most desperate of times. I wish I could be half the woman you are! I know Heavenly Father loves you so much and will take care of you and your family.

    We love you guys! Thinking of you always,