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?!)