Happy Days!!! :)

There has been a huge change over Dakota these last few days that have done both Zach and I's hearts so good. The best way to describe it is to first describe some of the characteristics of Dakota. Unless you are around Dakota a lot you probably wouldn't know or notice these things but first his eye contact with people is very short lived. If we talk to him he will look at us for a second and then look away. It has always really bothered me but it wasn't until recently that Zach and I talked about it. Of course like any child or baby, it is so fun to interact with them and play but it is hard to do if your child won't look at you for longer then a second. The doctor at NACD where we just had a recent evaluation described to me that it is hard for his brain to take it all in and process it at the same time...this is why he looks away. He gave me an example by telling me to look at him and add 60+38+15. I couldn't do it without looking away...it was weird but then it all made sense to me. Even so...I'm his mom so I have been praying lately that he will begin to look at me more and interact and communicate more with me. I NEED it!

Also, you have seen lots of pictures of Dakota smiling but most of them are smiles at his favorite movies and shows. It is REALLY hard to get him to smile at you (something you do or say). Unless it is laying him in his bed, maybe going to school, or one of his really good days...getting him to smile at me or anyone for that matter is rare. As his mom...that is HARD. That is one thing I miss the most. Before the accident I loved just being silly with him and making him smile and laugh. That is what we as parents live for. Those precious moments between you and your kid.

Anyways, all of the sudden over these last few days there has been a VERY noticeable change in Dakota and these behaviors. He has started smiling a lot and not just at shows but at Zach and I. Even today in physical therapy he started smiling and giggling. He has started looking and focusing on us more. And for the first time since Dakota's accident, Zach and I FINALLY had a very happy moment "as a family" together. Dakota was super happy one night and Zach and I were just laying on the ground next to him. We were giving him a little help to roll back and forth to us and he was doing awesome. He started smiling as if he was proud of his accomplishments (which is also a first. He normally doesn't care if he does something good and we cheer and clap for him like most kids do.) He would giggle with us and it felt like we were finally getting to actually play together again. Obviously it isn't the same kind of play that we used to be able to do together...but it was play and it felt SO good. I felt like a real mom again and not just a therapist or a nurse. It felt so good to see us ALL laughing and smiling together again like we used to.

So all of you parents out there...PLEASE don't take those moments to laugh and play together with your kids and as a family together for granted. What I would give to go back in time and just PLAY. I long to have Dakota take the lead in play again and just be his partner in crime...doing whatever, wherever, however messy he wanted. Live in the moment and don't worry about the LONG list of to-do's that we all have. They will still be there tomorrow or the next or the next...but you never know how many moments left you have to just play with your kids. You don't know what tomorrow brings and they grow up so darn fast!

Along with these changes I have noticed his head control getting a lot stronger. Even the physical and swallow therapists both mentioned that today. He is beginning to push on his crawls across the floor and not just on the inclined slide (which is easier). He is standing so much stronger with his sit and stand exercise. And most importantly he just seems to have a little more try and desire behind everything he does. Today at physical therapy I couldn't believe how much he was looking at the toys and REALLY trying to get his arm up and do the pushing. Normally he is more passive and just helps the last little bit and sometimes doesn't even look at what they are wanting him to do. It was so cool.

I just hope and pray that these changes are here to stay and not just a phase. Our lives are a constant roller coaster with highs and lows and everything in between. Things come and go but I pray that this is not only here to stay but to get even better!!!

And I am MOST grateful to a LOVING Heavenly Father who I KNOW has heard my prayers, who knows how much we needed this...even if it doesn't last. I know he heard me.

KEEP SMILING DAKOTA!!! YOU HAVE THE MOST HANDSOME SMILE I HAVE EVER SEEN! (and I'm not just saying that cuz I'm your mom)

Let's make more messes together!!

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!

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!