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!