Rough week

It's been a really rough week around the Friedli household. It all  started last Tuesday when  I rolled my ankle really bad running. I knew running was my outlet but I didn't realize how much I really need it until I had to take this whole week off because I ended up spraining my ankle. I didn't realize how much those endorphines or whatever happens to your body when you exercise keep me going and at least somewhat upbeat. I ran again for the first time again tonight and although I still don't feel 100% I feel a little better emotionally.

Along with the lack of running came a lack of sleep. Dakota has been consistantly sleeping through the night now for a couple of months and oh how we appreciate that. He has come such a long way in that department which has helped us drastically. No sleep can really do a number on you physically and emotionally. Well this week did not go so well...why?...who really knows. That's what Zach and I have come to realize with a brain injury...there is really no rhym or reason to ANYTHING and if you try and think of the millions of possibilities of what could be causing this or that, it is useless cuz in the end...no one knows...not even the doctors. So it is frustrating to say the least. Two mornings this last week he decided to wake up at 3:45 and 4 in the morning and one night he decided not to go to bed until 3:30. All of this is on top of all of the medications, essential oils, prayers, andwhatever else you can think of to get and keep this kid asleep. Luckily Zach's sweet parents have come and resued us after these long mornings so we can get some sleep but it doesn't take away the frustration of taking steps backwards.

I have found myself every day this week telling Heavenly Father..."I can't do this anymore!" I want to give up every day but it really isn't possible because this is our life and there is no going back. Oh how much I wish I could go back to November 26th and hold Dakota in my arms all day so that fence could not have fallen on him. I miss that little boy SO much it physically hurts. It's crazy how much you can miss someone that is right in front of you. Don't get me wrong I still love him to pieces but nothing is the same and I miss his hugs, his smiles, his talking, his laughs, his footsteps, his hands holding mine, his hugs, his kisses, his personality, his EVERYTHING! I pray every day that Heavenly Father will help me to see that same boy in him...sometimes I do...and sometimes I feel like I am holding a stranger. I feel like someone kidnapped my little boy and gave me another who looks exactly like him but is completely different.

I have found myself questioning God a lot this week. Asking him why???? Why my little boy? WHy do we have to go through SO much? Why don't we deserve a miracle? Why do you hear of SO many others who go through a trial but it ends miraculously and all is well? We have been through TWO Major things and have had faith and hope for a miracle and still have not recieved it...WHY? Are we not deserving? What does it take? I know this life is a test but why does it feel like it never ends? Where is the light at the end of the tunnel...I cannot see it anywhere. Why do you not hear my prayers? Why??? I feel guilty after questioning God so much because I know he sees the bigger picture and knows what is best but it is hard not to.

I was so grateful for a member in a bishopric in a ward I just happened to attend last Sunday because we slept through ours (it was one of those nights). I was grateful for his humility and honesty as he bore his testimony. His family had been going through a trial and they had prayed and fasted for a result but the exact opposite happened and they were struggling. He admitted questioning God himself this same way. Even his testimony and faith was shaken. He encouraged those who felt this way to pray to know God's will for them and to just do the very best you can with what you have been given. So this is what I have been trying to do. I don't know if I will ever know God's will for us...at least not for a long time...but I am trying to do the best I can with what I have been given. Some days it's not much and others it is more.

I have struggled also because Dakota's birthday is tomorrow. Yes, it should be an exciting and happy time but I am struggling with it. One, because as I try and figure out what to get him and I see all of the things he WOULD have loved but no longer cares for...it hurts. When I think about how to decorate or what cake to make I realize it really doesn't matter because he isn't going to care...he can't even eat his own birthday cake this year. The last two years he has had his very own cake and this year he can't even have a bite. I struggle with him turning another year older because it means that it is more time of his childhood that I am missing what he would have been...what he would have accomplished by now. Every day that passes without my healthy boy is hard.

So...as you can see I am a wreck! I often wonder if the saying is true...God won't give you more then you can handle...because I think I am maxed out and ready for a big fat miracle....or at least right now a normal nights sleep...I'll take whatever I can get at this point!

Where did July go???

I can't believe July is almost over! This month has flown right by but it has been filled with a lot of business and activity. We just finished up our 3 week break from the hyperbaric chamber and decided to do one more round (40 treatments) starting tomorrow. So today is kind of my last day of freedom...last day to have a little time to myself while Dakota naps (he naps so good at home in his bed)...last day to just be home and not have to be somewhere every day. It is bittersweet though because I do LOVE the people that work at the hospital and especially back in the chamber with us. I have missed their smiling faces and visiting with them every day. In a way it is nice to get out of the house for a little bit every day...and of course we continue to hope and pray that it is helping our sweet little cowboy's brain heal and help him get back in the saddle again! So 8 more weeks of the hyperbaric chamber...here we come!!!!

I have been really spoiled the last few weeks because I had my AMAZING sister Annie and her three kids here with us for a couple weeks and then my mom came for 10 days and left yesterday. It has been so nice to have an extra set of hands around at all hours of the day and night...when they are here I wonder how we do it without them...but somehow we do and we do just fine. My sister and I with all the time we have on our hands ;) decided to give my house a little makeover. Our two biggest projects were the hallway (since we have pretty much had nothing down the hall) and the dining room wall. After four years of the same thing it is nice to have a change and look at something new.

Annie is always filled with great ideas and we had a lot of fun...I must confess she did most of the work while I was busy with Dakota but we had so much fun together. There really is nothing like sisters! My mom did so much too...so much cooking and preparing some of Dakota's food so we could freeze it and I wouldn't have so much work to do. She got all trained with his trach and watched him by herself several times so Zach and I could run errands and go on a date. She even had the trach come out while she was babysitting and did great! I'm already going through withdrawals without them but it makes me SO grateful for the wonderful families that both Zach and I have! Couldn't do it without them!

Don't mind the mess on the table. The 3 things have chalkboard paint...I have yet to write something fun on them though! :)

My new hallway...yes it is doors...Zach thinks it's a stupid idea but I love it. SO fun!

We did a little celebrating for the 4th and 24th...nothing too crazy except the Perry parade of course! :) Since Zach and I moved to Perry we have always gone to the Perry parade. It is seriously the funnest little parade ever! It is just the right amount of time, it is not crowded (at least at our favorite spot), and you get a TON of candy.(Elder L. Tom Perry was even in this year's parade) It was fun to have my sister's family with us to watch their kids get all the candy and be so excited. I missed seeing Dakota out there but I was so grateful at how well he did during the parade. He just sat on my lap content as could be. The night before the parade we did fireworks with Zach's family at Ashley and Beau's house. Dakota was pretty fussy the whole night and it took everything I had to not let the tears flow. It made me so sad that not only he couldn't do what all the other kids were doing but he didn't even enjoy doing the things he used to. Zach and I were both feeling a little down that this might be the reality of our lives. Wondering if we would ever be able to do or go anywhere as a family again and have fun. Will we ever be able to see Dakota enjoy something and just have fun like kids do?? I prayed a really sincere prayer that night (not that my others aren't sincere) that Dakota would just be happy the next day (as we had plans for the parade with Annie's family). I just wanted to have one good experience as a family together instead of regretting going. I needed it so bad. So when Dakota sat contently on my lap and watched the parade it meant more to me then anything. He wasn't smiling and laughing like the other kids but at least he wasn't crying and it made my whole day! I even let him suck on a fun dip and he LOVED it. (His swallow therapy is going awesome and last Tuesday was his best session yet. He is really getting interested in the tastes and beginning to use his mouth and tongue a lot better. Now when i stop doing the taste therapy stuff at home he starts to cry and just stares at the tupperwares. It is exciting to see him start to have an interest in it.)

Here they come with their flags to start the parade!

Me and the kiddos!

Sucking on the fun dip.

The big boys!

Trai and Grandma showing Dakota the sparkler at  Ashley's house.

Last night for the 24th we did fireworks at Ryan and Lindsay's house with Zach's family again and Dakota did better. He got a little fussy during the loud ones but it wasn't too bad.

Grandma Nannie and Zach's Aunt Karen (who lives in Texas) got to come too so it was a special treat!

Kisses from Nannie

More lovin!

Snuggling with Aunt Karen

I have begun feeding my addiction again...running a few races. I ran the Perry 5k and got first for my age group 2nd for girls and 13th overall. I finished in 21:03 so I was pretty pumped. I also ran a 5k for a fundraiser for a little 3 year old girl named Faye who has leukemia...these are by far my most favorite races to go to. I ended up third overall and first for girls. After the race they had a kids carnival. My sister and her kids came with me and watched Dakota while I raced. After the race we let the kids go play some of the games and then we decided to let them go down the big blow up slides. Dakota was in his stroller and we just parked in front of the slide to watch. He was pretty intently watching the kids go down so I began thinking...I wonder if he would like to go down it. It was of course a little chaotic and loud with so many kids and I wasn't sure I could make it up those wobbly stairs holding him but Annie said she would help me so I thought well lets give it a try. The worst thing that's gonna happen is he is gonna cry and hate it and then I'll know. As I started up the stairs going side to side and bouncing I looked down at Dakota's face to see if he was doing ok and he had the cutest little grin on his face. I thought WOW, he likes it. Going down the slide was even better...he had the biggest smile ever and even gave me a little giggle. We of course had to do it again! :)

Peyton and Trai keeping Dakota entertained while I raced.

Aunt Annie taking such great care of our little man!

Telling me how proud he is of me for winning! ;)

Ready or not here we come!

So fun!

I think I have lost my mind though because I am officially running my first marathon in September...The top of Utah marathon. I have ran 2 half marathons and they have completely satisfied my desire for distance. I have always in the back of my mind said I would like to do a full marathon someday just to do it but I have NEVER had the desire to actually do one up until this last month. A couple of girls I run with were signed up for the top of Utah half marathon in August and I decided to do it with them. Well, when  I went to sign up it was already full so I was completely bummed! I started looking at the course for the full and thinking...what if...I contemplated for a couple weeks and finalized my decision after talking my friend Emily into doing it with me. So we are on the countdown now and have 8 more weeks til race day! My goal is just to do it since this is my first experience but in the back of both of our minds we are secretly hoping that we could qualify for Boston...not that I would go and do it but just the fact of knowing that I could if I wanted to. :) I have decided  I need to see a psychologist to find out the real reason behind this insanity. Do I want a challenge that I know I can control? Or do I think if I do this I can do anything? Or has all of this just made me completely crazy?! Probably a combination of it all!

We got to spend an evening with the Western Wishes group a couple weeks ago. We finally got to officially meet the amazing people behind this wonderful organization and we had such a good time. You couldn't find more wonderful people who genuinely care about others and who have a sincere desire to just help. They are so great. We had dinner and got to meet John Wayne Shultz from American Idol and got to hear him sing. He made it to the last round and got cut right before the top 20 but not only is he an AMAZING singer (of country...my favorite) but just one of the nicest, genuine guys around. He took the time to talk to everybody and just really cared about being there. We got to meet some other incredible kids too. It was just a great night overall...so HUGE thank you to the Western Wishes whole gang for putting it on!

All the Western Wishes kids and their families.

All the Western Wishes kids and me...Dakota wouldn't let anyone else hold him without freaking out.

Us with John Wayne Shultz (Dakota is doing his dystonia thing so it was hard to hold him for the pic...all stiffened up)

Dakota is still making progress...slowly but surely (at least to me it is slow...therapists and doctors tell me otherwise but I am ready for him to be walking and talking again). He is really beginning to try and communicate more and more with his body language and facial expressions. You can definitely tell if he is not wanting something...it's a little bit harder to figure out what he is wanting but we are learning. I had a cool experience with him the other day. This last month he has really started loving his blankies again which to me is just another sign that my little Dakota is still in there. He has always LOVED his blankies (any that we had that were soft although he did prefer two which were similar fabrics). I don't remember at what age but the binky thing just never went over well  with him. He liked them but never could keep it in his mouth when he was a newborn...it always popped right out when he sucked. So eventually he gave up on it and started sucking on his blanky like his cousin Lane used to. It was kind of nice for me because instead of needing a blanky and a pacifier we just needed a blanky. That blanky worked miracles. Anytime he was sad or upset his blanky could soothe him like no other. We never went anywhere without it....

Mmm...that's good!

Trying to share it with his cousin Houston

Can't let it go!

Cuddling with grammy!

Now, he won't settle down and go to sleep without it. He doesn't suck on it...yet...but he likes it to be cuddled around his face. Anyways the other day he was just fussing for me (which is not uncommon). I tried cuddling him...no good...I turned a cartoon on for him which usually does the trick...no good...so I asked him if he wanted to watch Diego cuz that is another of his favorites...no good. Finally I asked him, do  you want your blankie...SMILE...duh mom...I got it and he was happy and content as can be. It was so amazing to see how much he wanted to tell me and communicate to me what he wanted but he couldn't physically tell me besides crying. I just wish I could jump into that little brain of his and figure him out. :)

Snuggled with Dad and his blanky getting ready to go down for his nap.

We still are on the fence about in home or outpatient therapies as we are waiting for the insurance to make a decision if we can still keep in home so he hasn't had any therapists coming in for awhile now except for early intervention ones that come every so often. We are still staying busy though with our NACD program which is a ton of work but I can tell Dakota is getting stronger with his head and trunk and starting to push down the slide better and better.

Doing a little tummy time watching a show!

He is getting stronger and stronger holding himself in this position. We pretty much just keep him from going side to side or pushing out of it but he bears most of the weight on his own. Look at that strong head. Buzz is our big motivator during this and he will stay pretty happy...doesn't even realize he's working. :)

Resting with mom after holding the crawl position.

Trai was a great helper with Dakota's therapies while she was here. He had some of his best pushes down the slide when she was helping and she was our little "timer girl."

The hardest part about this month was losing two precious little boys...Gage (who I posted about awhile ago) and our sweet little angel friend Dylan who I have talked about quite a bit. We got to spend a little time with Dylan over the fourth weekend but I had no idea that would be my last opportunity to be with that sweet boy. My heart has ached for both of these families and attending those funerals was really hard on both Zach and I. We were able to put ourselves in their shoes as we were there and I literally felt as if I could have been at Dakota's funeral for how much my heart hurt. These along with dealing with the pain of Dakota has me often wonder why our loving Heavenly Father would take these precious little children away from their parents who love them so much. Growing up you have this perfect picture of what it will be like to be a mom and have a family and none of it includes watching your child suffer or die before you...that's just not how it's supposed to happen. We are all just supposed to grow old and die. When it doesn't work out like that it throws you for a loop and you just aren't really sure how to handle it...at least me. Both of these funerals were beautiful and inspiring. I know these two boys are in a FAR better place and especially Dylan who was suffering from the tumor is free from all pain and sorrow. This is so comforting to know and I know this will probably sound so weird but  in a way I wished Dakota could be free from all of his pain too. Not that I want him to die but at times my heart hurts watching him cry and be unhappy and not able to control his body how he wants it to be. I want him to be able to run and play and be happy again like he used to. So in a weird way I was envious of Dylan and basically so happy for him. It doesn't take away the pain and sorrow that his family and all of us who knew him have because we miss him but I am grateful to have known him and that I had the opportunity of learning and becoming a better person from him. So thank you Dylan and the Shaw family for touching our lives.

Dakota and Dylan...Friends forever!

As Dylan's Aunt Chelsie said..."We will forever be Doin it for Dylan!" Trying to live up to the example he has set!

Happy Father's Day

(I know this is a little late :) )

Happy Father's Day to my sweetheart and to our two most AMAZING dads in the whole world! All three of you have brought me so much joy and I don't know where I would be without you! I sure love you and I'm so glad we get this day to celebrate YOU!

For Father's Day I was trying to think of something that would be fun for Zach. Since he went blind it is kind of hard these days. All of the things that he loves just aren't the same anymore. He can't go hunting (at least none of you would want him out there with you :) ), watching movies aren't the same, even going out on a drive in the mountains is just not the same. Close your eyes and try and do all the things that you enjoy and you will see what I mean. So, basically he still LOVES to get massages and to go out to eat. Well, Friday night was our date night (when Doug and Vicki were available) so Zach had already planned with one of his landscape clients to eat dinner with them. They had invited us over for dinner (sweetest people) so I couldn't take him out to dinner and it would be too late to take him for a massage afterwards so I had to get creative. Zach has always loved camping (although even that is still not quite the same) so I thought what if we just sleep over in Mantua for the night...a little getaway from the same routine we do every day. So we did it! We didn't even get up there until 11 by the time we ate, got all our stuff and drove up there. Since it was just a short night we just had a blow up mattress in the back of my car. It was a little tight but it was so fun. I had brought a lap top and movie and treats for something to do but as we laid there we both said, "wow, this is so nice and quiet. No oxygen concentrator, air compressor, monitor beeping, video monitor fuzz in the background. So instead of watching the movie we just laid there until we fell asleep. I know that sounds pretty lame and boring to most of you but it was really nice for us. Sleeping in and cuddling was the best part. We didn't even think of getting up until like 10:30. I talked Zach into running around Mantua lake with me (not the funnest father's day activity I know) but it is so pretty around there I didn't wanna pass up the opportunity. He was a great sport and did it with me.

Although it was a great getaway for us for the night, there is still not a time where the pain of life doesn't seem to creep in. As we laid there in the morning and heard all the 4 wheelers driving by I just thought how much fun that would be to be able to do that as a family. Zach loves that kind of stuff. As we laid there I thought of the night last summer when we slept over in Mantua in the back of Zach's truck because our AC went out in the house and it was way too hot. It was so fun having Dakota there with us waking us up in the morning. I thought how much fun he would have had camping out in the car with us. As we ran around the lake and saw all the little families and little boys out fishing with their dads and grandpas my heart just ached because I know how much Zach LOVES that kind of stuff and was so looking forward to doing that with Dakota. I so wanted to just trade places with these strangers I didn't even know. I wanted them to see how lucky they were. I felt regret that we didn't DO more of these things as a family before Dakota's accident but Dakota was just getting to that fun age where we could have and Zach was just finishing up school and we would have had a lot more time. I pray that one day we will be able to be that family and be able to do things together again. I often wonder what lies ahead for us. I know I shouldn't waste today worrying about tomorrow but it is hard not to. The other day I heard President Manson's quote, "Do not fear. Be of good cheer. Your future is as bright as your faith." (It may not be exact but that's the gist of it.) I try to remember that and focus on my faith so that we may have a brighter future.

We still had a good time together and it was fun to see Zach excited about something again.

I haven't updated on Dakota lately so I think I am due...:)

He is doing awesome with his capping trials. He is capped for pretty much most of the day. He still will have moments where he struggles and forgets to open the airway, most often when he is upset and crying. He is managing his secretions a ton better (a lot less drool and drainage out the nose) and we often see or hear him swallowing. Where it is going is still unsure (stomach or lungs) but I think he is doing well. We are gonna really try and push the capping trials and mouth stimulation to hopefully have a chance of getting the trach out by September. If he doesn't get it out then then we have to go another full winter before they would even think about taking it out. So...we are pushing him as best we can. We meet with a Ear, Nose, and Throat Doctor the end of July and they will be the ones who give the final go ahead so keep it in your prayers that he will keep getting better and stronger. He has to obviously be able to be capped ALL day and not need any suctioning and cough everything out on his own.

We went through a really cranky time with him a few weeks ago. It was non-stop crying, no smiles or laughs, and just plain grumpy. We couldn't figure out if it was the meds we had taken him off of, his diet, capping trials, or just him. After talking with his doctor she explained that every tiny change we make will affect him greatly so making all of these changes at once is probably playing a big part. So we put him back on one of his meds that help with his agitation while we are trying to do so much with the capping and diet. It's REALLY hard on us when he is so upset all of the time because we are already trying to cope with this huge change in our lives that has left a huge hole in our heart and then on top of it to have him cranky all the time with no smiles just really makes getting through the day even harder. His cute smiles and laughs are pretty much the only thing that keep us going. So, I'm so glad things are getting a little better in that area. It was a really rough few weeks for us.

We had our three month review with NACD and that was really good for me. After three months of doing the non-stop therapy that they had given us it gets hard. Of course I would do ANYTHING in the whole world to help Dakota which is why we do this but when I do this all day every day of course I wanna see some big results. We have definitely seen improvements but of course I feel like there should be more for how often we are doing it. It was good to hear Bob (the director) say he is right where I would expect him to be. My reaction, "really?! cuz I feel like he should be creeping by himself already for how much we are doing this. he said, "If he were creeping on his own already I would fall out of my chair." He said he is on the right track and the huge reduction in his spasticity is the first step. He said his eyes were doing much better and he was impressed with his cognition. So here we go with another three month therapy program and we will keep at it the best we can.

The best part about being at NACD that day was a sweet little mom that walked in with her family after me and came over and talked to me. She was so sincere and so sweet. Her daughter had suffered a brain injury at birth from lack of oxygen and they started with NACD when she was 17 months. She told me the doctors said she would never walk or talk but just like any mom you can't just give up and say ok. She said Dakota reminded her of her daughter when she would have to carry her around. Her daughter is now 13 and walked into that building on her own. She still can't verbalize words but she is able to communicate with some sign and understands everything. She was able to crawl not too long after being in the program and walked at age seven. These parents were so loving and dedicated and because of that, this little girl has come so far. I talked to Bob more about there situation compared to Dakota. He explained that because Dakota's injury happened later in life it is better then at birth because his brain already had so many connections compared to at birth they have none. This gave me so much more hope that this precious girl who had no connections has been able to come so far, I know Dakota who was such a little smarty pants can do it too. I know it will continue to take a lot of work on my part but it is so worth it. Just the very thought of seeing him walk and move his body how he wants and to hear his sweet voice again is worth any price!

Bob also helped me understand the big fear that has been hanging over me the last little while. When Dakota's accident happened all the doctors and neurologists had told us it takes up to a year to a year and a half for their brains to heal and to see where they will be. Well, as it has now been seven months and getting closer to that year mark, of course I'm getting a little nervous. He is not crawling or walking or talking or anywhere near these goals. Bob explained what that year mark really means. That is the time where the spontaneous recovery of the brain occurs. Where recovery from what you had will happen pretty much regardless of what you do. After that year mark does not mean that no more progression takes place. After that it is just like any other person, the brain can still learn and make more connections and can continue to progress. He pretty much said that the year mark really will make no difference on Dakota's progression. This has helped a ton and that fear of the year is now gone.

We finish our 80th treatment with the hyperbaric chamber on Monday. I can't believe it has already been 80! It is hard to know where to go from here. Of course we have continued to see progression with Dakota but it is still hard to know if the chamber is playing any role in this. I would like to hope for all the time and money we have spent there that it is but it is hard to really know. They told us when we started the last 40 that there really is no protocol with brain injuries. Pretty much when you stop seeing progression is when you stop the treatments. Well, of course I hope we never stop seeing the progression so do we keep going for the rest of his life?? :) We will hopefully have a more in depth talk with the doctor there to help us decide what to do next...whether to take a 3 week break and start again or just be done. We obviously don't have unlimited funds to keep it up forever but if it is helping enough we of course do not want to stop. Decisions, decisions!

We just lost our in home therapy because our insurance said there is no more risk for Dakota to go to outpatient therapy now the respiratory illnesses are pretty much gone so now we have to start with outpatient which will be up in Logan. So pretty much Logan is our main destination these days. I will miss the convenience and help of having them come to our home and the wonderful therapists that we have grown to love. It will be a hard adjustment for us but what can you do. Insurance knows best, right?! ;)

Well, as always a HUGE thanks to all of you who continue to keep Dakota and our family in your thoughts and prayers! Thanks for listening to me vent and complain and for your inspiring comments that keep us going. It is by far the hardest road we have ever been on with no road map to show us what or where to go. We need all the help we can get...so thank you!

Here are a few pics.

I'm not very good at getting therapy pics anymore but here is one of Dakota in a theratog suit that helps give him more support.

Sitting up like a big boy watching his show. His head is getting a lot stronger. It doesn't fall forward hardly at all. He still tries to bring it back to far though so we need to find that perfect middle.

Just some fun family pics from Sunday dinner at Aunt Jenny's house

Going down the slide with cousin Houston

Trying to get Honeybun. He LOVED the dogs.

Just swinging with Aunt Jenny

Just being cute in Poppy's arms. What he does best! :)

Swinging

Snuggling with Uncle Beau

Snuggling with Grammy

Chillin with Uncle Ry, Chloe (sorry if I spelled that wrong), and Grammy

My parents were able to come for a quick trip a couple of weekends ago for a family reunion. Always fun to have them here! I didn't get many pics though. ;(

Snuggling with Nana watching a movie on the lap top. Dakota's favorite thing to do! He LOVES movies! His favorites are still Toy Story and the very old primary videos Zach's grandma gave us of kids singing primary songs. They are the one and only things that can snap him out of non-stop crying.

Just smiling at Papa. He STILL loves cowboy hats and loved when my dad had his on. Still a true cowboy at heart! Just has to get back in the saddle again. Hopefully someday soon! (Have to congratulate my dad on his roping this week in Reno! Got 8th out of 202 teams in the team roping! He still has it, even in his sixties! ;)  Love ya dad!)

NEVER GIVE UP DAKOTA! WE LOVE YOU!

Papa and Snowflake are ready for you ANY time!

Olson Family

So all tragedy especailly involving kids really hits home for us. Many tears have been shed at our house for the sweet Olson Family. Zach went to school with Brandon (the dad). The whole family was involved in a VERY bad car accident in Provo Canyon recently and both the husband and wife were in critical condition but are recovering pretty good. There little 1 year old was just fine but unfortunately there 5 year old son Gage died. My heart is broken about this because I know the feeling of what it is like to lose a child. Although Dakota survived those first few days were so unsure and I experienced all of the emotion of losing him and although he is still physically here I struggle every day with the loss of what he was and trying to accept what we have. It is hard to explain but I know how much these parents hearts are aching right now on top of all of the physcial pain and struggles they are going through themselves. I know money can not heal them but it can help with the stress of all of the expenses that they are going to have to face due to all of this.
SO...there are 2 different accounts opened for them at two different banks. If everyone that viewed this page even donated $1-5 we could all make a difference and help this family out. So do what you can and please keep them in your prayers!

The other account is at Mountain American:

Mountain America Credit Union account#9237216

 

I'm sure you can call either bank and transfer money if you do not live close enough to go to one of these banks. Thanks!!!

Temple

I had the wonderful opportunity of going to the temple this week. Unfortunately it has been quite awhile since I have been. Zach and I's recommends expired in March and as it always goes it seems to take forever to get with the program to go and meet with the bishopric and then the stake president. After finally getting a new one I still hadn't gone for bout a month and was feeling that push to go. As you all know my time is super limited these days so it's not like I can just get up and go when I want and have my neighbor or whoever just watch Dakota for a few hours while I run and go. So...after way too long my sweet mother-in-law who started her "grammy days" for the summer with Dakota again (which is so super nice) met me up in Logan after we got out of the chamber so she could take Dakota home and I could go to the beautiful Logan temple. It was much needed and the experience was different then ever before.

As I walked up to the doors my heart was racing and I felt almost anxious. It was really weird. As I walked in and saw the sweet temple workers there to greet me I couldn't hold back the tears. I was like seriously Tessie...already?! I just felt this overwhelming feeling "welcome home." The temple is obviously not my "home" but I felt that sense of peace, love, and safety that you feel when you are home. It was as if the Lord himself was standing there greeting me and saying..."I'm so glad you finally came. I have been waiting for you and am so happy to see you." I knew that this is where I needed to be.

As I waited for the session to start I opened up the scriptures and at one point happened across D&C 98:1-3. "Verily I say unto you my friends, fear not, let your hearts be comforted; yea rejoice evermore, and in everything give thanks; Waiting patiently on the Lord for your prayers have entered into the ears of the Lord, and are recorded with this seal and testament- the Lord hath sworn and decreed that they shall be granted. Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord.

I knew the Lord has heard every one of my millions of prayers and pleas although at times I have felt like maybe he wasn't listening to ME or maybe he doesn't care about ME. As I sat in the celestial room and poured my heart out I felt like he was right there next to me just listening to every single word. I know that no matter where you pray He hears you but for some reason in there I felt like He was closer and listening even more then He ever has. I knew my prayers "have entered into the ears of the Lord" and one day they will all be fulfilled.  I can't wait when all of these afflictions will "work together for my good." I am learning more about patience and trust then ever before and I can never let go of the faith and hope that is in my heart because when I do I am filled with despair.

I was the last one in the celestial room and I'm sure the temple worker was a little worried about me but I didn't want to leave. I felt for a little while that all of my burdens and worries that weigh me down every day were just lifted off me for a bit...not gone...they were still sitting next to me on the couch but I didn't have to hold them for awhile and it felt good. I didn't want to leave because I didn't want to pick them up again. If they would have let me I would have brought my blow up mattress and just slept there overnight if I could. :)

As I eventually got the courage to leave, walking out those doors my circumstances hadn't changed a bit but I felt stronger and more determined to take on this crazy life I'm living. I even thought for a second "bring it on...I can do this. I can do hard things." At least for awhile. :)

I MISS NORMAL

I miss normal is the best way to describe why the tears are just flowing these last few days and my heart is aching. I asked a friend a few weeks ago how her and her family were doing and although I can't remember her exact words she basically said things are just normal and good. She expressed how she was grateful for normal...we aren't rich, we aren't poor, we are healthy and just happy to be where they were at.

I miss normal SO much. I miss hearing Dakota's little voice waking me up in the morning instead of the sound of a trach...I miss him telling me why he is sad instead of hearing him scream and cry and trying to guess out of the million things that could be wrong what it is...I miss playing with him, letting him take the lead and just enjoying being there with him instead of me doing all the play...I miss a normal day of just cleaning the house and doing laundry instead of therapy, therapy, therapy,...I miss just up and leaving last minute to go take something to Zach or run to the store instead of being bound down at home...I miss taking Dakota to the store with me and chasing him around and hearing his little giggles (I used to love it when Zach would be home and I could run to the store by myself. Now I HATE it! I hate having to wait for someone to be home so that I can go and I miss seeing his little body in my cart. It is so lonely now!)...I miss letting him decide what he wants for breakfast and sitting down at the table to eat with him...I miss cleaning up the messes afterwards instead of cleaning out a stupid blender and feeding bag...I miss our old bath times where he would LOVE to play in there forever and ask for bubbles (now it seems like such a chore)...I miss being able to go out and pull weeds or work in the garden while Dakota could run and play (he LOVED being outside)...I miss him asking to play with Tanner (our neighbor) and watching them just laugh and play together...I miss planning our summer trip to AZ to swim and play with cousins or to go camping(now the idea of it sounds impossible)...I miss going anywhere in the car without having to load up 10 million bags filled with medical and emergency crap...I miss having Zach being able to drive and take me out on a date...I miss Zach being able to go out and truly enjoy the things he loves to do like hunting and fishing...I miss playing on my slowpitch softball teams and doing what  I love to do...I miss our smiles and free spirits that seem to be taken over with the stress of our lives...I miss being able to ask anyone to babysit instead of having to bug the same three people every time we need to go somewhere...I miss seeing Dakota suck on his blanky...I miss his hugs and kisses A LOT, I give him plenty but they are just not the same...I miss going to Sunday dinners at the Friedlis and how excited Dakota was to be there, he hated when it was time to leave...I really miss his voice and ALL of the funny things he would say...I miss looking forward to his next milestones (I wonder every day what he would have been learning or doing now), instead we are back to square one trying to learn to hold our head up again (This is one of the hardest things for me. All you parents know how excited you are for your first child and how fast you want to see them sit up, take that first step, smile, talk, etc. You are experiencing EVERYTHING about parenthood for the first time. You look forward to every new thing and I feel like all of that was just taken from me. Everything he had learned and everything he was going to learn. Not sure if any of this makes sense, but it does in my head) I JUST MISS NORMAL!

This poem a trip to Holland describes perfectly the feelings of having a child with a disability:

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This describes it so perfectly. The problem is I got to go to Italy for two whole years and I know how truly wonderful it is there. But then in one split second I was kicked out to Holland. And yes, there are some wonderful things about Holland but I can't forget the memories of Italy. They are a deep part of me and consume my mind every day. And the part that scares me the most is that I don't know if I'll ever get to go back to Italy with Dakota or with any child in this life. And that is hard to take in. I will never let go of my hopes and dreams to go back but for now I am here in Holland and I am trying my best to see the beauties that are here every day. Some days it is hard though.

Sorry to dissapoint all of you who think that we are so amazing through this with this post. But the truth is...we still cry almost every day even though it's been 6 months. The truth is I can't wait for the second coming when Christ will come and we can return home and all this super HARD life will be done and Zach and Dakota will be perfect again. When the crazy preacher guy or whoever he was was advertising the end of the world was coming last month...I'm not gonna lie...I didn't believe him but if it really happened I wouldn't have been dissapointed. In fact in my own secret way I was hoping he would be right. Someone gave me a card that said...The grass looks greener on the other side but it is still hard to mow. I know that is true but man...no matter how often we mow it doesn't seem to get any easier over here.

Race Day

Race day is officially completed and done and it was such a blast! We had such a good turn out with just under 70 people on Team Dakota! It was so fun to see everyone in their blue shirts all united for Dakota! A HUGE thank you to all of you who got up so early to drive all the way down to Salt Lake to be part of it! It meant so much to us to have all of you there! One of the head people in the organization came up to me afterwards and thanked us for having so many people out. I know we made a difference because of all of you! THANK YOU! We have lots of fun pictures from the day! There are a lot because of everyone being such great photographers! (I'm adding a lot for our memory)  Thanks everyone!

PREPARATION

Everyone getting gathered and pumped!

Zach's sister Jenny, Grandma, and Dakota (and Zach's brother Ryan posing on the side) :)

Poppy and cousin Houston

Aunt Julie's cute fam

Dakota saying what is the hold up! Let's go already!

READY, SET, GO!

Go Walkers!

So I totally talked Zach and Ryan into running with me last minute. Neither of them ever run but I told them I can't go that fast in cowboy boots and pushing a stroller...Come on! So they did and they did great! Both of them were incredibly sore afterwards but it was worth it! :) Right boys?!

My cute mom, sister and nieces

You guys look way too happy and energetic for a race! :)

So do you guys! Cute Grandma Marilyn and Doug (Zach's dad) cheered everybody on and took all of these action photos!

My two rockin sisters that one the race together! Go Team Dakota! I totally would have beat them if I wasn't wearing boots! ;)

Zach's pregneant sister Ashley tearing it up!

THE AFTER PARTY

Not so sure I'll get Zach to go running with me any time soon. :)

Zach a little more re-cooperated with his buddies

My sister and her husband  

Our little fam. Dakota did so good and was just blabbering away some of the time during the race. By the end of the day with pictures and everything he was ready to go. Came home and slept for 4 hours! It was a big day for him. Not used to so many people!

Dakota snuggled with Uncle Matt

My sister and cute niece

Dakota snuggled with Daddy

Us with our friends kids. Mandy's little girl didn't wanna leave her momma so I figured since Mandy has a baby in her belly anyways she might as well get in the picture with us. :)

My fam that was able to come. My sister and mom came all the way from AZ, my brother and his wife came from Idaho, and some of my cousins from around here in Utah. That was one of the best parts...seeing my family. Thanks for coming all the way to support us!  Sure love you guys!

(I'm sad we didn't get one with Zach's fam :( )

Home relaxin with mommy after his BIG day

Yes I ran a full 5K in cowboy boots. Since Dakota's cute shirts say These Boots are Made for Running I thought...I should wear my boots. Then the realistic side of me thought...I can't possibly run 3 miles in boots so I counted it out. The night before as we were out to dinner with my family... my sister who had packed her boots said we should wear our boots and my mom said I will. Then my mind really got turning. My sister and mom were planning on walking but I wanted to run so I thought...what the heck let's try it. I packed my running shoes in case my feet were bleeding or something since I had NO idea what this would be like. Needless to say, it was not as bad as I thought it would be. I wouldn't say it was comfortable but it wasn't too bad. Actually I'm thinking about coming out with some new running boots! :) The funniest thing was hearing the people we passed say, "she is wearing cowboy boots!" I'm sure they all thought I was a crazy but that's okay. It was worth it for Dakota! He of course wore his boots too!

Us in our sexy boots! :)

These boots WERE made for running! Believe it or not!

Cutest boots of all! Dakota's!

Another one of the best parts about going to the race was that we got to meet sweet Charlie and his parents. Charlie is a little boy that the hospital staff at Primary Children's had told us about. They wanted us to get in contact with this family to kind of make connections with other people who have faced brain injuries. They gave me their blog to look at. They were the first family I ever really felt a connection with through this even though I had never met them. Charlie had gotten Meningitis when he was about 18 months and had gotten brain damage. He is now four and just the cutest kid out there. Although Charlie and Dakota's brain injuries are not the exact same it is nice to know someone else who knows in some way what it is like to watch your perfectly healthy child drastically change in an instant.  They are such great people!

Dakota and Charlie

Even with all the festivities and family here. We still got some therapy in and his cousing Logan was a big helper.

She rolled with him on his mat and he thought that was pretty fun.

She kept track of the timer while I did his eye tracking

Dakota wearing his cool dudes while being capped during a capping trial (that's the little blue thing over the trach making him breathe all on his own)

He had fun playtime with Aunt Annie and his cousins

These are some of the slide therapies where we practice the creeping pattern. He is getting stronger and faster at pushing himself down. We still have to help him get his arms and legs where they need to be but then he pushes off mostly by himself.

Me and my friend Emily getting him all ready to go.

Cute Hallie is going down with him

He made it all the way down!

Most of the time tears at the start but mostly smiles at the end.

We started taking him to church again a few weeks ago just  to sacrament. We figured we better take it slow. It is really hard because we have to hold him because if he was in his wheelchair (which he doesn't love much) sitting right next to us he would just look at us and cry to get him out. So we end up holding him and it is a long hour trying to hold that 31 pound wiggly boy and try and keep him entertained the whole time. It's kind of like going back to the baby stage where they need entertained the whole time. It's hard to go back to that when he was so good at just playing and entertaining himself the whole time. It's good to be back as a family again though. Hopefully we will be able to go with him to nursery again soon so he can see all his friends and sing songs and have some  fun!

All ready for church and looking SO handsome!

Dakota and mommy. (Don't mind my drugged look...my sister while she was in town touched up my permaneant makeup so I'm a little swollen in the eyes :) )

Unfortunately Dakota got sick Monday night with a cold and it has been a rough few days. Luckily, it didn't get quite as bad as last time so we didn't take him to the hospital (I'm saying it's because of my extreme essential oil obsession...Zach would tell you otherwise) so we have just had a lot of cuddling and down time together. I think Dakota has enjoyed getting out of most of his therapies. :) He is pretty much over it I think now but his oxygen has still been a little lower then it should so we have had to have him on oxygen most of the day. He is getting back to his self though.

Even though he was sick we had an appointment with a new doctor at Primary Childrens Dr. Such-Neibar. She is the doctor that saw Dakota the most in the hospital and was just so good and on top of everything making the necessary changes he needed all the time. We were hoping she would be our follow up doctor but because she has been around there for a long time she has a full schedule and didn't think she would have the time to meet with Dakota as much as he needed, which is how we got stuck with the other doctor I didn't care for much. (I won't name names because he is a very nice guy just not for us) Anyways, of course as a parent you want what is best for your child so I have been stuck in a dilemma on what to do. I decided a few months ago to just make an appointment with Dr. Such-Neibar even though she was a few months out and just get in when we can with her and see what we can do. So Tuesday was our appointment. Even though Dakota was sick I couldn't cancel...we had waited so long. Needless to say I am SOOOOOO glad we did. From the get go she was once again right on top of things asking questions and providing solutions to help Dakota progress. With the other doctor I just felt like he was just wanting to maintain where Dakota was at. This doctor wants to continue to see him progress. Because she had seen how he was in the hospital, she had a way to measure how far he has come and she was totally impressed with how good he was doing. She said I know to you it may not seem like it but he has come such a long way in a short amount of time. Of course to me that was music to my ears. She has seen A LOT of kids and knows so much, so for her to say that I know he really has. She was so impressed with his improvements in his spasticity she said she wouldn't even consider doing the Baclofen Pump or seeing the neurologist for the deep brain stimulation. This of course was a huge help because I was so torn on making these huge decisions. She informed us that there is an oral medication that can be taken for the dystonia that he does have but she wanted to see video footage of him doing his therapies to see what and how his dystonia was getting in the way so we can target exactly what he needs to help him. She was just so much more thorough and interested in Dakota. As any parent knows that is what you want from your doctor. She did decide she wanted to do another round of Botox injections just for his ankles but that is really his only area of concern. (Last time we did Botox it was pretty much all over his body-neck, back, biceps, wrists, quads, ankles, pretty much everywhere) Overall, we just left with a much better feeling of where we are at and where we are headed. She was more then happy to take over Dakota's care and we feel so good about this decision.

On Monday we took Dakota off of the can of formula that we have been feeding him and started blending real food for him. The doctor at NACD that we meet with for his therapy program had recommended speaking with a nutrition guy from California Dr. Julian Niel to get him off of the formula and start giving him good foods that can help the body. It made sense to me...I mean realistically how can stuff in a can be what is best for a growing two year old boy. So finally after having a phone conference with Dr. Niel and getting everything ready to rock and roll we started. I was a little nervous at first because obviously my time is already limited and lets face it...opening a can is a lot easier then preparing and pureeing food. But thanks to Jenny and my mom who helped me prepare some of it to freeze, it has really gone pretty smooth. Dakota has done well on it. He threw up the first day...I'm sure his little tummy was in shock but since then it has been all good. It is a very raw and natural diet. He gets a breakfast of thermos cooked cereal of raw grains and seeds with some yummy figs, prunes, and blueberries. Two meals of a vegetable broth with lots of raw veggies and a little protein. One meal of a formula that consists of raw goat milk, goat yogurt, and some other supplements. Luckily, he doesn't have to even taste any of it because I sure haven't been brave enough to taste it by the looks of it. :) He has got to be the healthiest little two year old eater out there because I know there is probably not any two year old out there that would probably agree to eat any of this. If we ever get the swallowing down and he can eat orally again...I might be in trouble. :) His bowels have gotten more regular and he has gotten some pretty bad gas now but I guess we deserve it.

TMI I know! :) I just have to remember it all though!

A huge thank you again for everyone that came out and ran, all of the sponsors that made it possible for us to have our team shirts, Chelsie Christensen for designing them and making them so dang cute, and just everybody who is still praying, thinking, and supporting us through this difficult time. There is not a day that goes by that I don't miss my sweet Dakota's voice and activities and I can't give up my hope that I can have it all back again! So thanks for helping us get through each day. Your comments are always so uplifting and inspiring!

HURRY UP DAKOTA...SUMMER IS ALMOST HERE!