Friday, February 18, 2011

Baby Steps

Things are still happening over here in the Friedli household that give us hope and courage to keep going. Although they are small baby steps, we are still excited to see continued progress.

We started doing hyperbaric chamber treatments for Dakota up at Cache Valley Specialty Hospital in Logan on February 1st. This is pretty much a chamber that you go in and it gives you pressurized oxygen for a sustained amount of time. I don't know ALL of the scientific information behind's a little over my head...but basically the pressurized oxygen gets into the bloodstream to help heal damaged tissue. They use it most often to heal wounds. There has not been enough research done to know for a surety whether or not it helps in healing the brain but there have been success stories out there so we thought why not. We decided to look into this because we had heard a couple people mention it in the hospital, then as we were home one of his occupational therapists mentioned doing it, and it is also something that Zach had done for his eyes when he saw the doctor in Texas. So, we started searching around for places near here that do it and we met with the doctor up at Cache Valley and she and all of the people that work there were amazing. They of course couldn't guarantee that it would help Dakota but theoretically what it does makes sense that it could help in his healing process. Just like any parent out there would do...we got to give him every possible chance so we decided to go for it. Because insurance doesn't cover hyperbaric treatment for brain damage...we were a little nervous about the cost but the people at the hospital were so kind and they were very willing to work it out with us and made it affordable for us to pay for the treatments. The CEO of the hospital (who had just met us for the first time) told us that they were all hoping and praying that this would be the answer for Dakota. They are ALL rooting for him and it is so sweet! He goes in the chamber Monday through Friday for one hour a day. It is a good three hour round trip for us each day but it is nice to get out of the house for a bit. Zach goes in there with him because he can't go alone because he is so little and with the trach and everything. When he sleeps through the treatment it is a great time for the both of them but if he is awake during it, it is not so fun for either of them. Dakota gets pretty agitated in there and moves it gets pretty warm in there so by the end he is a sweaty, unhappy boy...and so is his father. Everyone asks us if we have seen improvements with it but it is hard to say. Have we seen improvements? Yes. What we don't know is if these improvements are just improvements Dakota is making on his own or due to the hyperbaric. We feel that we have seen quicker improvements since we started but it is still so hard to tell. But we will just keep doing them because it isn't hurting anything but only helping are chances. They recommended thirty treatments for is his 14th so we are about half way there. Please keep Dakota and these treatment in your prayers. Ultimately it is still up to the big man upstairs but we have to do ALL that we can do and he will make up the rest, so that's what we are doing!

Before he could start the treatments he had to get tubes put in his ears because the pressure in the chamber could hurt his ears and burst his eardrums. So here he is bright and early waiting to get them put in. He did great!

First time in the chamber...did well.

So tired!

Some of the improvements that we have seen have been with his neck. If you haven't noticed from previous pictures, Dakota has since being at Primary Children's favored turning his head to the left side. It used to take all we had to turn his head to the middle or right and as soon as we would let go it would go right back over. Gradually he started to keep it in the middle longer when you turned it and lately this last couple of weeks he has started turning his head on his own to the middle and right and keeping it there. He will follow you turning his head a lot better. He has also been holding his head up stronger for longer periods of time. It helps if we put the T.V. on as a distraction and he will hold it up sitting up (with me supporting his trunk) for several minutes without even falling forward. His eyes are tracking even better and we have begun to see more purposeful movements with his arms. One of are favorites that he just started a few days ago is Zach will hold up his fist in front of Dakota and say, "give me knuckles" Dakota will look at his hand, smile and with all of his might slowly lift his arm at the elbow straight up (he always has a fist so that isn't an issue :) ) and Zach will pound his fist. He smiles and gets pretty proud of himself.

He just got this new chair this week that lets him sit up with a tray for toys.

Just hanging out.

Happy guy

The first time I put the tray on with nothing on it he just sat there. I went and got a few toys and put a ball on there. All of the sudden he got so excited and moving his arms. He stared at the ball for awhile and then very slowly started moving his arm to the ball and bumping it with his arm. You know that it is purposeful movement when he is focusing on what he is doing. It was really exciting to see! His movements are definitely not very coordinated and we don't always get consistency but you can tell he is trying.

We are finally getting things organized with all of the therapists and this is exciting. It has taken so long to get all of their assessments done and get things moving but I feel like we are finally on track and starting to get scheduled visits. He gets therapies from Early Intervention and also a company CNS. We had our goal setting meeting with early intervention and it had been a few weeks since some of the therapists had done their assessments with Dakota. They were all surprised how much better he was doing since they had last seen him a few weeks ago and were talking about what great progress he is making already. This was so good to hear from someone else who knows what they are talking about. As we are around him every day, we notice changes but I think that it is harder for us. Kind of like watching a newborn baby. They change so fast but when you are with them every day you don't see it as much as other people. It was definitely exciting to know that they were excited about his progress and changes as well. We just hope and pray that they keep coming!

He finally got his new Mickey button for his g-tube (what he gets fed through).

It started out looking like this with poor stitches and the works.

After a few months changed to this.

And now looks like this. It has been so much nicer and easier for all of us.

The last couple weeks we have had issues with him throwing up and the last two nights have been horrible. Like I said before, if it is not one thing...there is always another. They think he may just have some viral thing and are going to start some antibiotics today to hopefully help. I feel so bad for the little guy and he definitely doesn't need to deal with this in the midst of all else he is being faced with. Luckily he is a tough boy and he keeps on fighting.

I had an epiphany the other day as I was running on my treadmill. (I don't get to run very often anymore but when I do it is definitely therapeutic for me). I hate to admit this but there are times when it gets really hard and I don't think I can get through another day. Unfortunately although I know I shouldn't think this I find myself wondering, Why me? Why my baby? I sometimes want to throw myself a little pity party and just cry. I know there is a good reason we are going through so much and my faith in God and his eternal plan for us all gives me comfort in knowing that even though I don't understand everything right now, one day I will. I know that despite this major trial and tribulation in our lives He still loves me and He is only doing what is best for me. I read a talk while in the hospital that stated if we could see the eternal perspective of are lives as God sees it, we would never ask for anything that is contrary to his plan. It's hard to believe that if I understood it all I wouldn't ask that God would not let this happen to my son, but I know that it is true. But even though I know ALL of this with all my heart, those hard days come and I find myself asking why me? As I was running the other day this old saying from are assistant coach Coach Miller at SDSU popped into my mind, "YOU NEED TO HAVE HARD BARK." Now I know that sounds weird and he had a lot of weird sayings but this one hit home. It pretty much just means you have to be tough...hard bark. Now I used to think that I had pretty hard bark...I thought I was pretty tough...but the Lord has humbled me and made me realize I'm not as tough as I think. I need His help more then ever. As I thought of that I kind of kicked myself in the butt and decided I needed to quite feeling sorry for myself and my situation and be tough. Dakota needs me more then ever right now and if he is going to get any better he needs his mom to be strong for him. I don't know what the Lord has in store for us but I feel like Dakota has a great purpose in this life and he was preserved for a reason. The Lord needs me to physically be the hands that help strengthen and help heal him because he can't physically do it. I need to do my part and he will do the rest. So I am committed now more then ever before to work my tail off for this kid...sleep or no sleep...because he needs me.

Making him stand up.

Such a bog boy. When my niece Trai (4 yrs old) saw him stand like this she said, "He looks like he did when he was awake." She is a cutie...keep praying Trai that he can "wake up."

My cute niece and all my sisters (even my newest sister...Heather) flew up for a night to be with me for my 27th birthday (I know I am getting old...go ahead and say it Beau). I've said it before, and I'll say it again...I have the VERY BEST sisters in the whole world!!!! Our house was not the most exciting place to we have to be so cautious around our little Dakota but it was SO good to have them here to laugh with and to cry with. They always know just how to cheer me up! :)

With some ice cream of course!!! This was of course after a huge meal at Texas Roadhouse...we always make room for ice cream though! Heather had self control though. :)

Waiting at Texas Roadhouse. Zach was such a great dad and stayed home with Dakota so we could have a night out. It was much needed and luckily Dakota was a good boy for his daddy! Thanks Zach!!

They made Heather and I sit on the saddle to give us a birthday yee-haw! A little embarrassing but they did say we got the loudest yee-haw they have ever heard. :)

Reading a book with Aunt Shana and Trai

Cuddling with Aunt Dawn

Talking with Aunt Katie

Snuggles with Aunt Shana

Me and Dawn

Dakota and Trai...she LOVED to hold Kota on the bean bag...even though he seems to be about as big as her these days. He has definitely chunked up and grown a lot in the last bit. Sometimes I'm afraid his double chin is gonna cover up his trach and he won't breath.

Annie and Trai got to stay an extra couple days to watch their sister-in-law in a Annie went up to Logan with me and we got pedicures while Zach and Dakota were in the chamber. It was great...especially the company!

Thanks so much to my AMAZING sisters for taking the time to be with me. I love you SO much!
Thanks to ALL of you out there who despite the months that have passed continue to keep Dakota in your thoughts and prayers. We aren't giving up hope and continue to rely on the strength and help of all of you and especially our loving Heavenly Father!!


And I'll let you sneak ALL the candy you want! :)