Sunday, May 29, 2011

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!


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!


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!


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 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!