Happy Anniversary

Wednesday the 26th we celebrated our 4th anniversary! I can't believe it has been four whole years...the time is just flying by.  This anniversary was so much more special to me because I have truly realized through this trial how much I LOVE and ADORE Zach, what an amazing husband and father he is, and how much I REALLY need him in my life! In the hospital there was a handful of people including nurses, doctors, social workers, etc. who would warn us how hard these kind of things are on marriages. They counseled us to take time out for ourselves to be together because these types of things they say break up even the best of marriages. I can see in a small way how that could be but not for Zach and I...if anything it has brought us so much closer together and has made us appreciate one another more then ever before. We have both tried to see the positive side of everything through this and we have both agreed how grateful we are to have one another and how hard it would be to do something like this alone or also how hard it would be if this had happened to one of us instead of Dakota. I definitely couldn't do it. Zach is my rock when I need it most, he makes me laugh when all I want to do is cry, he is what gets me through each day when I just want to give up. Zach and I joke that we are bipolar now because one minute we are crying, the next we are smiling and laughing. It just kinda comes these days. I try to justify that that's what anybody would be like in this type of situation...but maybe not...maybe I am going crazy couped up in this house all day every day. :) Whatever it is, I am SO grateful for Zach because he is what cheers me up when I am down whether it's just with a big hug, a sarcastic joke, or just rubbing my back while I let it all out. So what I am trying to get at is HAPPY ANNIVERSARY Zach!!! I love you to pieces and couldn't imagine going a day without you by my side!

Now to the little guy that has stolen so many of your hearts:

We had an appointment this week with his nuero-rehab doctor. This is a new doctor for Dakota at primarys that didn't see him in the hospital but is the one who will be following him from now on. He is a super nice guy but wasn't the most positive from the get go. Although he can admit he doesn't really know how Dakota will be in 6 months or even a year, he doesn't think that Dakota will walk again, talk again, or even attend a normal school. It was hard to hear him say all that he did even though we know it is a possibility, but in our minds...if he doesn't really know because brains and kids are all so unique...then we are gonna just keep hoping for the best. He based all of that, off of Dakota's spasticity. He is still kind of tight in his body and is on the highest dose of Baclofen (medicine to help with spasticity) that he can have. There is talk in the near future of putting a Baclofen pump in him which will directly inject the medication right in his spine. This would allow him to be on a smaller dose while maximizing the medicine because it will go directly in the spine instead of taking it through the g-tube. It sounds a little scary to me but I also don't like how much medication he is on...so not sure what to think at this point.

Waiting in the doctor's office...trying to catch up on our MUCH needed sleep! :)

Even though the doctor wasn't the most positive we are still seeing positive changes in Dakota that the doctor didn't even ask us about. He was most concerned about his muscle tone (which has been getting incredibly better since the beginning). His smiles are getting so much bigger and he has even tried laughing a few times. His laugh is just a louder and faster breathing through the trach with a big smile...but it is so cute. His eyes are looking better all the time. He is really looking around good, trying to find us (even trying to turn his head towards us not just his eyes), tracking things for longer periods, etc. His neck is getting a little stronger (he is trying to lift it more when he is laying on his stomach and holding it up without help longer). When we stand him up to help him walk he has started to bend one leg and move it forward on his own. We are supporting all his weight and whole body but he is attempting to move his leg like he remembers what to do. He is still way too weak to do any big movements on his own.

We brought his car seat in the house and make him sit in it a couple times a day to work on holding his head up. He is not a big fan of it, especially at first but he works hard at holding that head up. Good job buddy!

One thing that he LOVES to do is ride this huge stuffed horse.

Zach and I hold him on there and pull it down the hall and he just smiles so big and thinks it's pretty cool.

What a good horse...even lets him lay on it.

We are still trying to get on a consistent schedule with this little guy but he runs the show. The sleep thing is by far the hardest part of it all. Just when we have a break through night where he sleeps through the night (9-6), the next night he won't go to bed til 11 or he will wake up at 4. Zach and I are both sleep deprived which I think adds a little to are bipolar behaviour. :) But we are hoping it will all come with time. We have had a few issues with his heart rate shooting up, even took him to the emergency room down at Primarys at 2 in the morning for it but nothing seems to be super concerning so they are just trying out some new medication to help get that under control. If it's not one thing it's another...so we just try and take it one day, one hour, one minute at a time.

Sleeping with his daddy!

Giving Daddy an eskimo kiss

Lucky for us...as I have mentioned before...we have the most amazing family and friends that are helping us out in so many ways. Are amazing ward family has been bringing us meals for the past two weeks and it has been SO incredibly helpful and nice to not have to worry about one more thing. Like I said, are days are so unpredictable and I like not having to worry about what I am going to make for dinner. So the biggest thanks to ALL of you who have brought us those delicious dinners. I think I have gained like 100 pounds from it since everyone has to bring us a yummy dessert too...but it's worth it! :)

Zach's parents (Doug and Vicki) have come up to give us little breaks which are much needed so we don't go completely crazy. They also do are laundry and grocery shopping which is SO helpful. I tried to wash a load of towels myself and ended up washing them three times because I kept forgetting about them and they would sit in the washer to long...not good. :) So thank you Doug and Vicki for all your help! We love you!

Thank you EVERYONE for ALL that you do. If you have even said one prayer in our behalf  we appreciate it SO much. We need ALL the prayers we can get to keep us going and getting Dakota back up and running. This is by far the hardest thing we have ever done and is physically, emotionally, and spiritually trying us every minute. The doctor admitted himself he has seen miracles happen so we will hold on to that and keep hoping for our own little miracle! Please keep the faith and prayers and thank you for them all!

WE LOVE YOU DAKOTA!

(We got these pictures taken right before are trip to AZ for Thanksgiving thanks to Doug and Vicki who wanted pics with the grandkids for their Christmas card. Isn't he a little hunk?!)

These BOOTS were made for Walking...and so much MORE

Anyone that knows Dakota knows how much he LOVES his boots. These boots were actually hand me downs from his cousin Case but he sure loved them. He had so many other cute hand me down shoes that I would want him to wear but anytime I tried he would tell me, "I can't wear shoes, I wear my boots." So he wore them rain or shine...shorts or pants. Vicki has caught a lot of cute moments with those cherished boots.

Here are a few:

Here they are...nice and roughed up...just how we like them

Cute little bum

SO studly!

1 foot

Then the other

Success!

Just taking a rest

Checking out his awees

Putting them on again...brace yourself

Don't leave them behind.

Just taking a rest with Buzz

They are great to play in

Here they are

My mom took a picture of what he was wearing when the accident happened. His shirt was cut off so it is missing but the most important components are here: BOOTS, HAT, and BELT BUCKLE

Hopefully he will be wearing them again soon! Keep working hard Kota...we love you!!!

I'll take you for a ride on my big green tractor

So before all of this happened I had been meaning to do a couple of posts showing some of the cute pictures that his Grammy Vicki has taken of him with things that he loves. I just never had time to do it yet but I thought why not do it now. They are so cute and it will give everyone a reminder of who that cute little boy is that we are all praying and hoping for. So sorry for so many pictures but putting them on here is the best thing that I can do with them. Otherwise they will just sit on my memory card doing nothing. :)

Dakota has always had a love for tractors and grammy and poppy got this sweet tractor and he has LOVED it!

 

Checking his feet to push the pedal

Racing mommy

Sexy boy...anyone need a ride?

Fun times with Uncle Ryan and Lucy in the back

She got away

OH Poppy..this is tough work

Shifting gears...watch out!

Grandma!!!

Giving my best pals a ride...Buzz behind him and of course Sophie! :)

Cutest cowboy I have ever seen!

Get back there Buzz!

If the tractor breaks down...just ride the dog!

1 week home

We have been home one whole week and have survived it...pretty good...I think. We got home Friday the 7th around 7 p.m. and from that moment everything was a little crazy and overwhelming. We had a handful of people over to bring equipment, showing us how to use it, then it not working and then them coming back, nurses, etc. It was pretty intense the first few days and it would hit about 4:00 p.m. and Zach and I would look at each other and say "what have we done today? Just keep Dakota maintained with meds, food, stretching, rehab, comfort, etc." We have become nurses, therapists, parents, and secretaries overnight. Luckily we have started to get the hang of things and have gotten on a good routine so things are getting better now. We have even been able to get dressed and semi-decent on some days. :)

With all the changes and craziness I do have to say it is SO nice to be home. It is so much more relaxing and peaceful even though we are so busy. Dakota is sure loving it too. We have seen a lot of little progressions since we have been home and his sleep schedule has gotten a lot better. Not perfect by any means but a lot better. In the hospital he had gotten really thrown off and we were lucky if he got 6 hours of sleep at night and not all at once. He would fall asleep anywhere from 9-1a.m. and sleep a few hours, be up a few, and go back a few. During the day he would sometimes nap but there was ALWAYS so much going on that it was hard to have a consistent sleep schedule. For those of you who know Dakota this is not him. He has been such a good sleeper since he was a newborn. Never waking up in the night, sleeping 12 hours at night and taking a good 2-3 hour nap in the day. The doctors started him on some meds before we left to help which helped a little but it was still crazy. Now that we are home he is falling asleep consistently around 8:30-9:30 and is staying asleep for anywhere from 5-9 hours now which is great! He is napping every day for at least an hour to four depending on the day. We hope to continue to get better.

My parents came on Tuesday and left yesterday. They bought Dakota a sweet bed that even Zach and I are jealous of. The head and feet can come up and it even vibrates to give you a little massage. I think Zach would rather sleep with Dakota now then me.

His new bed

I think he likes it!:)

Luckily we have qualified for in home nursing so we have a nurse come for eight hours every night. You think that this would mean that Zach and I are able to sleep good and relax at night but unfortunately not yet. Don't get me wrong we love having a nurse there but we are anal parents that any sound, any peep that is made we are up and in there making sure everything is okay. I trust the nurses but you know...nobody knows a child like it's mom so I feel like I need to be there to help and see what is wrong (if something is). I'm sure the nurses think we are crazy but that's okay.

The biggest changes that we have seen since being home is his emotions. The most exciting thing to share is that he is SMILING. :) His first smile was actually a couple days before we left the hospital. We were in physical therapy and all the sudden the sides of his mouth turned up a little bit like a smile...something he has never done before. The therapists said it looks like he is smiling and I had to agree. I wasn't sure if it was really a smile or he was just learning to use those muscles again but I took it as a smile. Well our first full day home he was smiling non-stop. Now it's not like his normal big smile before his accident like this:

but it looks like this:

Sometimes with the tongue out, sometimes not.

Smiling with nana and papa stretching him. They were great therapists.

His smiles started out with no real purpose behind them. He would just smile out of nowhere and nothing I did could make him smile. It was kind of like a new baby when they smile and you don't know if it's gas or what. The last few days we have started to get some real purposeful smiles in reaction to things that we do to him and that has been SO much fun. He will smile at peek-a-boos, little piggies, little tickles, Zach bonking his head with a ball, etc. This has been so special and I know a tender mercy of our Heavenly Father as we have been praying to see his sweet little personality come out. For all of you who know Dakota well he was always the happiest little boy, even as a baby. We are so grateful for each and every smile.

His cries have changed so much too. They are more intense and real. He can get really sad and they last a lot longer. It is more like a real cry without the noise because of his trach. He can't make much noise because the air passes through the trach before passing through the vocal cords. Every once in a while he will get some air pass there and let out a little whine. Although it breaks my heart even more to see his big tears I know it is a good sign. He definitely lets us know if he is not liking something or if something is bothering him.

Dakota's eyes, alertness, and responsiveness have also improved so much over the last couple weeks. He is beginning to focus on things a lot more and tracking things much better. He will know follow objects or people. Sometimes as someone just leaves the room you can watch his eyes just follow them out. He is able to find voices and noises with his eyes now. Before you would have to show him something in his line of vision and then he would follow. Now he has begun to find a toy with noise or a voice with his eyes and then follow it. He is not doing any of this consistently EVERY time you talk to him or do something but it is huge progress from where we started from.

He is moving his body a lot more now. His trunk and limbs are starting to move more often and with bigger and stronger motions then before. We really feel like he is trying to move and do certain things but it is just so hard to make his body do what he wants it to do.

They have not started his in home therapies yet but they have began to come in for evaluations and things and hopefully those will start soon. Zach and I work him like crazy every day but it is nice to have a professional come in and do what they do best.

Overall, we are so pleased and grateful for the baby steps that he is making. Of course we wish that he was so much farther by now but we have to stop and count our blessings and miracles each day to realize how far we have come and how grateful we need to be. Some days it is harder then others but we are doing the best that we can and the Lord is making up for the rest.

The thing that I have realized most as we have been home, is how nice it is to simplify your life. Before all of this happened it seems as though there was not a spare minute of time. There was always something or other that we had to go and do and the list of to-do's was never ending. As we have been home from the hospital and have been forced to focus on what matters most, our little family, I have realized how nice it is to simplify and focus on those things of true value. For some reason there is no longer places that I have to be and my to-do list is pretty much obsolete besides the obvious things. All of those things that kept us so crazy busy didn't just disappear but they are no longer as important as I thought that they were. I have more time now to be with my family, to have meaningful personal prayers and study time and it has made all the difference. There is so much out there to distract us and take us away from those things that matter most so I have to say that I am grateful for this opportunity that has forced me to change my way of thinking and doing.

As Elder Oaks said: "We have to forego some good things in order to choose others that are better or best because they develop faith in the Lord Jesus Christ and strengthen our families."

Please continue your prayers and faith for Dakota. We still need all of your faith and strength. Thank you for your continued comments. We read them, appreciate them, and love them all! You all give us so much strength, courage, and inspiration to keep going! WE LOVE YOU ALL!

STAY STRONG DAKOTA!

Progress Report

Where has the time gone??? I had to take Zach to Kinko's today, when we took a little break from the hospital and the guy said to pick it up tomorrow the 31st...I was like WHAT???? It's New Year's Eve tomorrow...you got to be kidding! It is crazy how the time just seems to be traveling by. But since I found out it is almost the new year...I thought well maybe that's a good thing for us...maybe we can hope for a better year and exciting new changes. (I'm not going to count on it since each new year has brought with it it's own set of challenges for the last three but hey three strikes your out...RIGHT???? At least that's what I'm hoping for.)

Well, SO much has been going on up here it has been too crazy to try and keep it all up to date...sorry to all of you! There doesn't seem to be a moment where there is not at least someone in our room doing something with Dakota or talking to us about one thing or another. Some days it is a little overwhelming and it seems as though we have no time alone but they are all so amazing here and we have been very pleased with the wonderful people that are working with Dakota.

Christmas came and Santa found Dakota even in the hospital.

Dakota opening his stocking.

Doug and Vicki of course brought us plenty of Christmas goodies as well.

 The cutest thing was a couple days before Christmas this cute boy that had been here for a brain injury brought Dakota a present because he felt bad for the kids that had to stay there on Christmas day because he was getting to go home. His cute mom peeked in our room to see what Dakota liked and they got him a Toy Story alien guy. It was so cute and sweet of them and brought with it the special Christmas spirit!

Giving Dakota his present all wrapped and everything.

Christmas day was a really hard day for Zach and I. It wasn't even because it was Christmas it was just one of those hard days where no matter how hard I tried the tears would not stop coming. We just miss our sweet little boy and hearing his cute voice. It is hard to stop thinking about what he was like and focusing on where we are at right now. That night Doug gave me a priesthood blessing and it helped so much. Sometimes you just need that added strength from your Heavenly Father to keep you going.

Overall, we are still doing well and just continuing to take it one day at a time. We are so grateful to have Dakota with us and grateful for this opportunity to slow down our busy lives and just love him to pieces. Things like this really put life into perspective and make you realize what is most important. My love and appreciation for Zach and Dakota, both of our families, and all of our friends has increased dramatically! Zach has been amazing through this all and I feel so blessed to have him by my side through all of this. I couldn't imagine doing this without him. I feel so blessed to have been given the gift of being Dakota's mom and although he is not the same little Dakota that he was right now, I feel even more blessed that he chose to stay here with us and let me be his mom for even longer here on this earth. Our children are truly a GIFT from God and we need to cherish them and treat them as He would want us to. 

It is really easy when things get tough to compare your life to others and think...man, this is not fair. Why do we have to suffer through these trials while other people seem to have it so easy. This can bring you down and is very depressing. If you really look around you, especially here in the hospital, you will realize your life isn't that bad. We have been given SO many blessings and it is our choice whether we want to look at our blessings and find happiness, or dwell on our problems and be depressed. The choice is ours.

Moving on to what is happening...

So, we found out a couple days ago that we will be going home sometime early next week because he is not quite ready for their inpatient rehab program. When I first heard the news I was pretty upset and had a hard time hearing it but the more I have talked with the rehab team and the more I have come to understand the better I feel about it and am actually excited to get to take him home. (I mean it is great living in a hospital and all :) ) We are excited for Dakota to get to go home and be in a familiar environment without all the beeps and loudness of a hospital.

He is tolerating the amount of therapy very well and the therapists are very pleased at the improvement that they see. Even the doctors have said that they have seen lots of little improvements since he has been here. The doctors really wanted him to be able to stay for the inpatient rehab but the rehab team feels as though this is not the most beneficial time for him at this moment. To be in the rehab program they have to be able to handle three hours of therapy a day (which he has been doing very well) but they also have to be able to participate in some ways. They don't have to be fully competent and everything but they have to be more active then passive. It is also a political thing with insurance as well. Insurance doesn't have to pay for rehab so what they will pay for is only one rehab stay. So...if Dakota does not improve enough in the insurances eyes each week then they will quite paying for his rehab stay. Then Dakota's one shot of really intense rehab is gone. So...in the rehab teams eyes...they don't want to ruin his one shot at this time while his brain is still recovering. They want him to have a little more time to recover so that when he is more ready they can maximize that time. We have come to find out that inoxic brain injury's (which is the fancy way of saying injury to the brain due to lack of oxygen) take a long time to recover from. So...like everything else in our lives we just have to wait and see. It could be a few weeks or it could be a few months before he is ready, or worse case scenario not at all. It is completely unknown and is up to Dakota. (And of course Heavenly Father)

So when we go home he will still receive therapy (outpatient or in home...not sure yet) a few times a week but in reality we will be his biggest therapists. We will be working him like crazy helping him build back the strength in his body and trying to reprogram that brain. Right now there biggest goal is to help him with his muscle tone. His brain is sending messages to his muscles to tighten up so his muscles are so tight. You would not believe how strong this two year old boy really is. Some days I can't even bend his leg it is so tight. They have been giving him medication to help with his tone and just lots of movement.

To help his little feet and ankles they put casts around  his feet to help his ankles get back into better position because he wants to point his feet down.

There they are putting them on. It was hard work for them getting his feet to stay in that position. The little casts were so cute but yet so plain...we couldn't have that so....

Uncle Ryan saved the day and definitely spiced them up a bit!

Doing his amazing work! Dakota doesn't even know! :)

The finished product! Buzz and Woody...who else???

So they left those on for a few days and then they took them off and pushed his feet up even more and redid them again. So of course Uncle Ryan had to come back and do his work again...

Ryan and his beautiful assistant Lindsay!

You can't see the full affect from this angle but it is Jessie, Bullseye, Rex and the alien all from Toy Story. I know he is amazing isn't he. Everyone in the hospital has come to admire his work. So if you ever need any artwork done for your kid's room or anything...Ryan is your man. He even painted Dakota this cute picture of Buzz to go in his room.

Thanks Ry for all your hard work and time! I know Dakota loves it!

So, Monday they will take off these casts and are planning on giving him a dose of Botox in his calves and recasting to help the tone even more. Botox...who would of thought. Maybe they will give me a little dose for all of the wrinkles all this stress has been giving me! (That's a joke)

So the physical and occupational therapists started out just coming to the room and stretching him out but they have definitely gotten a lot more intense. They take him down to their gym and do all kinds of crazy stuff with him. The first time they did I was like oh my gosh...they are gonna kill him. (Not really but they are just very aggressive and as the mom it was hard to watch) But I know it is all good for him and even though he cries at moments it helps his little body so much and is helping his little brain to stop sending those bad messages to his muscles. They have to remind me that he isn't crying because it hurts, he just is easily agitated and it is hard work for him. (Lately he has been having those sad emotional moments very often. I can't even count how often. Many times it is when they are doing things he doesn't like, other times he just does it.  This is all a good sign although it is hard as his mom to see. It is part of the brain recovery and shows signs that he is definitely more alert. His cries are not his normal cries but rather he breaths really rapidly, with a sad face, some tears, and now starting to hear a little whine. It has been so fun to hear his voice again although it is so short. They only last a few seconds and then he is normally calm again. But he definitely lets you know he is upset.)

Sitting up in his bed...this was only the beginning.

How cute is he though?!

Making him lay on his tummy and work on holding his head up. He does have some head control that the therapists are so happy to see but he does get tired quick and likes to rest it. He is looking at himself in the mirror. His eyes are looking a lot better. They come down more (he used to have them up a lot) and he is starting to have moments where he gazes at us and things. He still doesn't consistently follow things with his eyes but a few times we have got him to follow for a short moment.

They have him starting to interact with things but they do all the work for his arms and hands. They have used these cars, a puzzle, and a ball.

They also help him to stand and feel his body. He has to start all from scratch like a newborn. Our first goal is to get him to have more head and trunk control, being able to hold his head up and trunk up. He will need to learn to hold his weight on all fours, roll over, crawl, and walk.

It is hard to go back from the active little boy he was to all of this, but the comforting thing is there is a chance he can do it all again. They are excited about the improvements that they are seeing and the doctor says it is optimistic to say that he will walk and talk again but they wouldn't say he won't be able to. Although the chances are definitely not in his favor, we will take any chance we can get. His brain is still recovering and he is still improving they just don't know at what point he will stop improving so we will just keep working and mostly just praying for God's help through this all. We know Dakota is trying hard and is working really hard through.

The speech therapist also sees him every day. She works more on the senses and trying to get responses from him. When she first worked with him she did not see any eye gazing but over time she has begun to see his eyes come down and gaze a little bit. She is so cute and calls Dakota her boyfriend and just works so well with him.

Letting him smell some peanut butter.

All the therapists here have been so great and have worked so well with Dakota. Leaving them will be the hardest part because they are seriously so amazing. But we will keep working hard so that he can come back and have that great chance to work with them again.

As you can see from some of the pictures Dakota is completely off the oxygen and is able to wear an artificial nose during the day over his trach to help filter some of the air and give him a little humidification (just like our nose does for our airway). They have switched his feeds to bullis (not sure if I spelled that right at all) feeds during the day which just means he gets fed three times a day for about fifteen minutes (regular meals like us) instead of consistent feeds all day long. Both of these things have been great because it has freed him up and allowed us to hold him easier and now we get to take him on walks in his wheelchair. Too bad it's too freezing outside to take him out but he seems to enjoy getting out of the room and going and exploring other parts of the hospital besides his room.

Getting all geared up and ready to go!

Soakin up some sun from the window.

Family walk.



Sorry this is always so long but this is my journal so I want to be able to remember all of the details and can hopefully show Dakota when he is older all the progress that he has made, how far he has come, and what a miracle he is. He truly is our little miracle boy and we love him to pieces. I am SO grateful for this chance to be his mom.

And last but not least...our continued thanks to all of you for your prayers, faith, comments, and strength! I know I always say this but we honestly couldn't do this without all of you!!! We hope you all had a very Merry Christmas and hope you all have a VERY happy New Year!!

Go Dakota Go!!!