Tuesday, July 26, 2011

Where did July go???

I can't believe July is almost over! This month has flown right by but it has been filled with a lot of business and activity. We just finished up our 3 week break from the hyperbaric chamber and decided to do one more round (40 treatments) starting tomorrow. So today is kind of my last day of freedom...last day to have a little time to myself while Dakota naps (he naps so good at home in his bed)...last day to just be home and not have to be somewhere every day. It is bittersweet though because I do LOVE the people that work at the hospital and especially back in the chamber with us. I have missed their smiling faces and visiting with them every day. In a way it is nice to get out of the house for a little bit every day...and of course we continue to hope and pray that it is helping our sweet little cowboy's brain heal and help him get back in the saddle again! So 8 more weeks of the hyperbaric chamber...here we come!!!!

I have been really spoiled the last few weeks because I had my AMAZING sister Annie and her three kids here with us for a couple weeks and then my mom came for 10 days and left yesterday. It has been so nice to have an extra set of hands around at all hours of the day and night...when they are here I wonder how we do it without them...but somehow we do and we do just fine. My sister and I with all the time we have on our hands ;) decided to give my house a little makeover. Our two biggest projects were the hallway (since we have pretty much had nothing down the hall) and the dining room wall. After four years of the same thing it is nice to have a change and look at something new.
Annie is always filled with great ideas and we had a lot of fun...I must confess she did most of the work while I was busy with Dakota but we had so much fun together. There really is nothing like sisters! My mom did so much too...so much cooking and preparing some of Dakota's food so we could freeze it and I wouldn't have so much work to do. She got all trained with his trach and watched him by herself several times so Zach and I could run errands and go on a date. She even had the trach come out while she was babysitting and did great! I'm already going through withdrawals without them but it makes me SO grateful for the wonderful families that both Zach and I have! Couldn't do it without them!

Don't mind the mess on the table. The 3 things have chalkboard paint...I have yet to write something fun on them though! :)

My new hallway...yes it is doors...Zach thinks it's a stupid idea but I love it. SO fun!

We did a little celebrating for the 4th and 24th...nothing too crazy except the Perry parade of course! :) Since Zach and I moved to Perry we have always gone to the Perry parade. It is seriously the funnest little parade ever! It is just the right amount of time, it is not crowded (at least at our favorite spot), and you get a TON of candy.(Elder L. Tom Perry was even in this year's parade) It was fun to have my sister's family with us to watch their kids get all the candy and be so excited. I missed seeing Dakota out there but I was so grateful at how well he did during the parade. He just sat on my lap content as could be. The night before the parade we did fireworks with Zach's family at Ashley and Beau's house. Dakota was pretty fussy the whole night and it took everything I had to not let the tears flow. It made me so sad that not only he couldn't do what all the other kids were doing but he didn't even enjoy doing the things he used to. Zach and I were both feeling a little down that this might be the reality of our lives. Wondering if we would ever be able to do or go anywhere as a family again and have fun. Will we ever be able to see Dakota enjoy something and just have fun like kids do?? I prayed a really sincere prayer that night (not that my others aren't sincere) that Dakota would just be happy the next day (as we had plans for the parade with Annie's family). I just wanted to have one good experience as a family together instead of regretting going. I needed it so bad. So when Dakota sat contently on my lap and watched the parade it meant more to me then anything. He wasn't smiling and laughing like the other kids but at least he wasn't crying and it made my whole day! I even let him suck on a fun dip and he LOVED it. (His swallow therapy is going awesome and last Tuesday was his best session yet. He is really getting interested in the tastes and beginning to use his mouth and tongue a lot better. Now when i stop doing the taste therapy stuff at home he starts to cry and just stares at the tupperwares. It is exciting to see him start to have an interest in it.)
Here they come with their flags to start the parade!

Me and the kiddos!

Sucking on the fun dip.

The big boys!

Trai and Grandma showing Dakota the sparkler at  Ashley's house.

Last night for the 24th we did fireworks at Ryan and Lindsay's house with Zach's family again and Dakota did better. He got a little fussy during the loud ones but it wasn't too bad.
Grandma Nannie and Zach's Aunt Karen (who lives in Texas) got to come too so it was a special treat!

Kisses from Nannie

More lovin!

Snuggling with Aunt Karen

I have begun feeding my addiction again...running a few races. I ran the Perry 5k and got first for my age group 2nd for girls and 13th overall. I finished in 21:03 so I was pretty pumped. I also ran a 5k for a fundraiser for a little 3 year old girl named Faye who has leukemia...these are by far my most favorite races to go to. I ended up third overall and first for girls. After the race they had a kids carnival. My sister and her kids came with me and watched Dakota while I raced. After the race we let the kids go play some of the games and then we decided to let them go down the big blow up slides. Dakota was in his stroller and we just parked in front of the slide to watch. He was pretty intently watching the kids go down so I began thinking...I wonder if he would like to go down it. It was of course a little chaotic and loud with so many kids and I wasn't sure I could make it up those wobbly stairs holding him but Annie said she would help me so I thought well lets give it a try. The worst thing that's gonna happen is he is gonna cry and hate it and then I'll know. As I started up the stairs going side to side and bouncing I looked down at Dakota's face to see if he was doing ok and he had the cutest little grin on his face. I thought WOW, he likes it. Going down the slide was even better...he had the biggest smile ever and even gave me a little giggle. We of course had to do it again! :)

Peyton and Trai keeping Dakota entertained while I raced.

Aunt Annie taking such great care of our little man!

Telling me how proud he is of me for winning! ;)

Ready or not here we come!

So fun!

I think I have lost my mind though because I am officially running my first marathon in September...The top of Utah marathon. I have ran 2 half marathons and they have completely satisfied my desire for distance. I have always in the back of my mind said I would like to do a full marathon someday just to do it but I have NEVER had the desire to actually do one up until this last month. A couple of girls I run with were signed up for the top of Utah half marathon in August and I decided to do it with them. Well, when  I went to sign up it was already full so I was completely bummed! I started looking at the course for the full and thinking...what if...I contemplated for a couple weeks and finalized my decision after talking my friend Emily into doing it with me. So we are on the countdown now and have 8 more weeks til race day! My goal is just to do it since this is my first experience but in the back of both of our minds we are secretly hoping that we could qualify for Boston...not that I would go and do it but just the fact of knowing that I could if I wanted to. :) I have decided  I need to see a psychologist to find out the real reason behind this insanity. Do I want a challenge that I know I can control? Or do I think if I do this I can do anything? Or has all of this just made me completely crazy?! Probably a combination of it all!

We got to spend an evening with the Western Wishes group a couple weeks ago. We finally got to officially meet the amazing people behind this wonderful organization and we had such a good time. You couldn't find more wonderful people who genuinely care about others and who have a sincere desire to just help. They are so great. We had dinner and got to meet John Wayne Shultz from American Idol and got to hear him sing. He made it to the last round and got cut right before the top 20 but not only is he an AMAZING singer (of country...my favorite) but just one of the nicest, genuine guys around. He took the time to talk to everybody and just really cared about being there. We got to meet some other incredible kids too. It was just a great night overall...so HUGE thank you to the Western Wishes whole gang for putting it on!
All the Western Wishes kids and their families.

All the Western Wishes kids and me...Dakota wouldn't let anyone else hold him without freaking out.

Us with John Wayne Shultz (Dakota is doing his dystonia thing so it was hard to hold him for the pic...all stiffened up)

Dakota is still making progress...slowly but surely (at least to me it is slow...therapists and doctors tell me otherwise but I am ready for him to be walking and talking again). He is really beginning to try and communicate more and more with his body language and facial expressions. You can definitely tell if he is not wanting something...it's a little bit harder to figure out what he is wanting but we are learning. I had a cool experience with him the other day. This last month he has really started loving his blankies again which to me is just another sign that my little Dakota is still in there. He has always LOVED his blankies (any that we had that were soft although he did prefer two which were similar fabrics). I don't remember at what age but the binky thing just never went over well  with him. He liked them but never could keep it in his mouth when he was a newborn...it always popped right out when he sucked. So eventually he gave up on it and started sucking on his blanky like his cousin Lane used to. It was kind of nice for me because instead of needing a blanky and a pacifier we just needed a blanky. That blanky worked miracles. Anytime he was sad or upset his blanky could soothe him like no other. We never went anywhere without it....

Mmm...that's good!

Trying to share it with his cousin Houston

Can't let it go!

Cuddling with grammy!

Now, he won't settle down and go to sleep without it. He doesn't suck on it...yet...but he likes it to be cuddled around his face. Anyways the other day he was just fussing for me (which is not uncommon). I tried cuddling him...no good...I turned a cartoon on for him which usually does the trick...no good...so I asked him if he wanted to watch Diego cuz that is another of his favorites...no good. Finally I asked him, do  you want your blankie...SMILE...duh mom...I got it and he was happy and content as can be. It was so amazing to see how much he wanted to tell me and communicate to me what he wanted but he couldn't physically tell me besides crying. I just wish I could jump into that little brain of his and figure him out. :)

Snuggled with Dad and his blanky getting ready to go down for his nap.
We still are on the fence about in home or outpatient therapies as we are waiting for the insurance to make a decision if we can still keep in home so he hasn't had any therapists coming in for awhile now except for early intervention ones that come every so often. We are still staying busy though with our NACD program which is a ton of work but I can tell Dakota is getting stronger with his head and trunk and starting to push down the slide better and better.

Doing a little tummy time watching a show!

He is getting stronger and stronger holding himself in this position. We pretty much just keep him from going side to side or pushing out of it but he bears most of the weight on his own. Look at that strong head. Buzz is our big motivator during this and he will stay pretty happy...doesn't even realize he's working. :)

Resting with mom after holding the crawl position.

Trai was a great helper with Dakota's therapies while she was here. He had some of his best pushes down the slide when she was helping and she was our little "timer girl."

The hardest part about this month was losing two precious little boys...Gage (who I posted about awhile ago) and our sweet little angel friend Dylan who I have talked about quite a bit. We got to spend a little time with Dylan over the fourth weekend but I had no idea that would be my last opportunity to be with that sweet boy. My heart has ached for both of these families and attending those funerals was really hard on both Zach and I. We were able to put ourselves in their shoes as we were there and I literally felt as if I could have been at Dakota's funeral for how much my heart hurt. These along with dealing with the pain of Dakota has me often wonder why our loving Heavenly Father would take these precious little children away from their parents who love them so much. Growing up you have this perfect picture of what it will be like to be a mom and have a family and none of it includes watching your child suffer or die before you...that's just not how it's supposed to happen. We are all just supposed to grow old and die. When it doesn't work out like that it throws you for a loop and you just aren't really sure how to handle it...at least me. Both of these funerals were beautiful and inspiring. I know these two boys are in a FAR better place and especially Dylan who was suffering from the tumor is free from all pain and sorrow. This is so comforting to know and I know this will probably sound so weird but  in a way I wished Dakota could be free from all of his pain too. Not that I want him to die but at times my heart hurts watching him cry and be unhappy and not able to control his body how he wants it to be. I want him to be able to run and play and be happy again like he used to. So in a weird way I was envious of Dylan and basically so happy for him. It doesn't take away the pain and sorrow that his family and all of us who knew him have because we miss him but I am grateful to have known him and that I had the opportunity of learning and becoming a better person from him. So thank you Dylan and the Shaw family for touching our lives.
Dakota and Dylan...Friends forever!

As Dylan's Aunt Chelsie said..."We will forever be Doin it for Dylan!" Trying to live up to the example he has set!