Tuesday, April 19, 2011


Well, there are a few little things that don't tie in together that I need to write about so in no particular order here we go.

Random #1...AHHHHHHHH

So in 24 hours we had two emergencies that we had been trained and told could happen but have never happened and I kind of started thinking...oh this will never happen. Think again...they did...and within 24 hours of each other. What the heck!!! So the first one was in the middle of the night about 1 a.m. We didn't have a nurse that night and we were feeding Dakota. His tubing was hanging from his side rail on his bed to the pump. I noticed on our video monitor (which has been a lifesaver!) that he started waking up and moving a lot. I then didn't see his tubing in the monitor so I thought he must have hit it and it came disconnected from his extension out of his Mickey button (g-tube). I go in there and low and behold the whole button had come out of his stomach and the balloon that holds it in his stomach had popped so it was no longer usable. Now for all of you out there who don't know much about this stuff which is probably most of you (which is a good thing...I wish I didn't know about it either) it is not a life or death situation but if you don't get something in there soon the hole can close up and they would have to surgically go back in and open it back up. Luckily they prepare you with an emergency kit for these kinds of situations. Ours was in the car so Zach hurried and grabbed it and we got the emergency catheter in and all was good again.
Well, it didn't end there though I wish it had. The next evening I got an invite from my cute neighbor Terra across the street to come sub for the Bunco group that I used to play with before Dakota's accident. (Sure miss those cute girls) Zach was home with Dakota...he does an awesome job with him even without his sight...he's AMAZING! So we are nearing the end of the night and Zach barges in there door and calls out my name. I of course come running up and he informs me Dakota's TRACH came out. Are you kidding me...panic mode! This of course is a much bigger deal since it is his airway we are talking about. Poor Zach had him in the tub and somehow which I don't know how since his chain is tight, his trach came out. Zach rushed him out of the tub and attempted to undo the chain to get the trach loose to put it back in. Well, the chain is hard to undo even with a perfect set of eyes so he gave up wasting time and was gonna call me but he couldn't find his phone. Luckily, I was just across the street so he was able to grab me. I freaked poor Dakota out running in and rushing around his poor little neck. Luckily he was still breathing okay out of the hole in his neck and his mouth and nose so he wasn't without oxygen or anything but it was still not good. We survived it all though and are now better prepared and will no longer think that that would never happen! :)

Random #2 Baclofen Pump Trial
So Monday we were at the hospital all day for a Baclofen Pump Trial. So because of where Dakota's brain was injured he had SEVERE spasticity that he slowly developed over the first few weeks in the hospital. This is where his muscle tone was so tight that you couldn't even bend his leg without breaking a sweat or straighten out his arms. Baclofen is a medicine that helps with spasticity to relax the muscles. Well, Dakota was put on pretty much the highest oral dose you can take because his was pretty severe. So, the doctors wanted him to have this trial where they inject the medicine directly into the spine to be more effective. The benefits is that he would be on A LOT less Baclofen because it goes directly into where it is bbeneficial instead of being absorbed throughout the whole body. The pump would be inserted into his stomach like an insulin pump for someone that has Diabetes. Anyways, over these last few months his spasticity has improved drastically to the point that that they rated him at a normal persons level. His arms, legs, and hands have all improved and are loose and have a good range of motion. This is due to his healing more then to the Baclofen at this point. He needed the initial help of the Baclofen to even make that possible though. The problems that he still has is what they call Dystonia. This is where he makes certain abnormal movements of his body and "postures" his body in certain positions that are due to the brain injury. These are not all the time but they are just throughout the day. That has improved though over time. The Baclofen does not treat dystonia as well as spascticity so the trial went okay. It helped some and so they still think it would be beneficial for him to get the pump but it doesn't totally eliminate it. So they also recommended seeing a neurologist that specializes in abnormal body movements to talk about a different procedure that they do something directly to the brain. So we will meet with him hopefully soon and talk about all the options. Bob the director of NACD believes that through his program these symptoms could hopefully be eliminated through his therapies so to hold off on it all. I personally have seen these symptoms all get better gradually over time so am hoping that as his brain continues to heal and that they will continue to get better and eventually go away on their own. Overall, we have a lot on our plate to think about. These are some major procedures that take a lot of thought. It is hard being the decision maker over something so serious. I just pray we will make the right decision for what is best for Dakota!

Random #3 BIAU 5k
So I found out about this organization that is a non-profit organization to help research and learn more about brain injuries...prevention...support...just all about the brain stuff. Every year they do a 5K run, walk or stroll  to raise money and it is coming up on May 21st at Liberty Park in Salt Lake. So I thought I would put it out there for anyone runner or not runner to come out and support this great cause. I will definitely be running in it and hopefully it will be a nice day we can bring Dakota out and if I even have enough strength maybe even push him in the race...we will see...he is chunking up these days. :) But we would love to have as many people come out and support this cause and Dakota. I was thinking it would be fun to do shirts or something so that everyone who came because of Dakota could all be united. Not sure how to go about it or what to do so if anyone has any great ideas I am open to whatever. I am not a good planner with stuff like this so any ideas or help is appreciated! :)

Random #4 Speaking of 5K's...
So everyone who read my last post about sweet Dylan...if you haven't already gotten on their amazing blog...which you are missing out if you haven't...on May 2 they are having a Dancing for Dylan in Layton. It is going to be an amazing dance performance by some amazing dancers. They will also have a silent auction and kids carnival. It will be fun for the whole family so try and go. Then on May 7th they are doing a fundraiser 5K in Pleasant View. I am planning on being to both so you should too! :) They also have cute shirts and bracelets for sale on their blog that say Doing it for Dylan. Please support this cute family in their great cause to keep fighting to help Dylan. All of you parents out there know...you would do ANYTHING for your child and that is exactly what they are doing. You just can't give up and neither are we. Go to their blog for more detailed information. dylandshaw.blogspot.com

Random #5...Speaking of blogs
Someone commented that I linked Ashley's (that I wrote about from my last blog) blog wrong so I wanted to correct it for anyone that was interested. Sorry...I can't even keep track of my own blog let alone others. patrickandashley.blogspot.com

Random #6 Western Wishes
Dakota  has been chosen to be a part of this amazing organization called western wishes. They sponsor kids that have been given major challengers that love the western way. Well we all know Dakota is a little cowboy so this is so perfect for him. They are kind of like Make a Wish Foundation in that they will pay for you to go do something or just do little things for you. Tonight they dropped off a cute basket for Dakota that had THE CUTEST western shirt in there...(I will have to get a pic of him in it), a little horse, books, signed autograph of Tuff Cooper, and a cute little rope that I was excited about. ;) Thank you to Rachel for letting Dakota be a part of this amazing organization.

Random #7 Wonderful Family
I have been thinking a lot about Zach and I's family lately especially because of some comments some people have made to me. Now I have always known that we both have the COOLEST, FUNNEST, SWEETEST, ALL AROUND BEST families in the whole world. We are so blessed to have both of them in our lives. Through all of this they have been our lifesavers. Zach's family is always doing something to help us out whether it is driving Zach around for us, cleaning our house, bringing us meals, doing our laundry, making or buying things for Dakota, getting us groceries, babysitting Dakota so Zach and I can have a chance to be alone, even sleeping over so we can get some rest, or just visiting. My family although all the way in AZ are constantly doing things too. My mom and dad have been up here several times to help out, my sisters and brother are calling, texting, or sending me sweet letters to strengthen me and lift me up. They have also been out to to visit and give me hugs. Without them we would never make it so I just have to say a HUGE thank you to them. A couple of friends of mine have commented when I tell them all that our families do for us how lucky we are and that they are not as close or wouldn't have that kind of support from their families and it makes me realize even more how blessed we are. I know I can ALWAYS call on any one of them for anything and even if they were in the middle of something they would drop anything to help. We Love you FRIEDLIS and WINTERTONS!

That about wraps it all up for the moment...I know when I post it I will realize I for got something but that's ok!


Daddy wants you to feed him more birthday cake!


  1. Such a cute picture! You guys are so awesome! You handle all the punches, your such great examples. I love the 5k announcements! Thanks for letting us know! We will get the dates on our calendar!! I also think the shirts for Dakota is an amazing idea and have some ideas! I know w print shop that does a great job. We love you guys!!!

  2. Hello cute Friedli fam! I wanted you to know that my little 2 year old picked out the rope for Dakota man. We went to Smith and Edwards and I told him we were going to pick somthing out for a little cowboy that was sick, he says..."He would like this mommy." =) Cant wait to see the pic of him in his shirt! =) My family and I continue to pray for you all and pray that through this journey you can have peace and strength in large doses. Love, Hugs and Blessings to all three of you and hope to meet in person sooooooon!

  3. Emmi your little boy is soooo cute! You and Tessie need to meet in person! Come to the race!!!

  4. Western Wishes is working on maybe doing a ladies night out and would love to meet Tessie and hug you Jordan! =) Wouldnt that be fun? Pedicures and messages are on the agenda!

  5. What a lot of craziness for you guys, and such a blessing that everything turned out for the best. You and Zach never cease to amaze us, we love you guys so much and feel aboslutely blessed to be such good friends with the Friedli family they are an amazing group of people, and your family we know is just full of amazing people as well. Give Dakota a big hug from all the Lythgoe Gang!!!

  6. Oh my goodness Tessie I am so glad that everything is ok with those scares! AHHH! I will for sure be coming to that 5k to support the cause! We love and miss you guys soo much! And ps.. I am hoping that I will be quitting work soon if Clayton gets a job he has been applying for then, I can help you guys with that therapy you were talking about a little while ago??!! :)

  7. oh man. that is scary stuff :( Glad you got it all worked out, and hopefully you can have some smooth sailing for a while! you deserve it!! SO good to see your little family the other day...we love you guys!!!

  8. So sorry to hear about the scares and glad you handled them the way you did. You guys continue to amaze me more and more each day. We LOVE you guys so much and it was SO FUN and SO GOOD to see you guys last night. We need to come visit and bring ya dinner soon, so please let us know when a good time is. ALso, please let us know what we can do to help and when. I know we are constantly telling you and we aren't going to stop until you finally let us do something! :) Can't wait to do the races, so thanks for letting us know about them! Keep up the amazing work and Dakota will be better in no time. Thanks again for always taking time to keep us updated.. LOVE you guys and keep fighting Dakota, we know you can do this!

  9. Emmi that sounds like a blast! You guys are awesome! Let me know if I can help!

  10. Wow those are scary stories! Amazing how Zach can do all he does without his sight. Glad everything worked out ok.
    Western wishes sounds so cute and perfect for your little cowboy!
    So glad you have such amazing family to surround you and buoy you up during all of this!

  11. Hello Tessi-
    Again you don't know me. I think and pray for your family often. I am posting this link from my friends blog. This is a new medical intervention I had not heard of for treating muscle tightness. I thought it might be a look see. I hope you are having a nice day.