Thursday, March 22, 2012

Q & A/ Dakota update

So, are computer has been out for the last few weeks and it has been so hard. Computers...I love them but I hate them!! I have been able to still get on the Internet and check things on Dakota's Ipad but I hate typing on that thing so that is why my blog has been so quiet lately. I have missed it and now I have A LOT to update so the posts are gonna be flying off the hook for awhile til I catch up on life! ;) (yes I said it...flying off the hook...I am so gangsta!)

Anyways so my first real Q & A:
I just found your blog and have been reading back through some old posts. I don't have time to read everything, so I would love a summary of where Dakota is now in his recovery and what progress he has made. I am also interested to know more about your husband's blindness--how it happened, how much vision he lost, etc.

This has been something that I have wanted to fix for awhile but am not sure how. I realize for someone that doesn't know us at all and just gets on my blog, it is a little lengthy and confusing to get the big picture of what we are all about but I don't have the technological skill to figure out how to organize it to make it a little more reader and user friendly. So I am reaching out and turning this Q&A post back on my readers for help. If anyone has any ideas or know hows, how to make it very easy and clear about Dakota's accident/story, Zach's blindness, etc easy to understand and see when a first timer gets on here I would LOVE, LOVE, LOVE some help or input.

I have thought about tabs on top but have NO idea how people do that...I am very limited on my computer skills here. If you read my first ever blog you will know I only have this blog because my awesome friend Abbey set it all up for me and all I had to do is type and add pictures. I have learned a little more since then but not much!
I know I am WAY overdue on updating about my Dakota man (so thank you for asking that question and forcing me to bite the bullet)...I have been meaning to for a long time now but it's one of those posts that I know would take me awhile to get it done so I kept putting it off for a day that I would have time...and for some reason that day never comes so I'm just gonna bite the bullet and get it done!!
(So here is the answer for the first part of the question about Dakota. The second part about Zach I will hopefully answer later when I revamp this will come I promise!)
Over the past few months we have continued to see some great improvements that have brought us a lot of joy.

One of my most favorites that I have prayed for continually is more interaction and eye contact. He has really evolved in this area. He now will look at you when you talk and play with him and even smile back at you if you are funny enough or he is in the mood. ;) I missed that communication and interaction. I have longed for a feeling of connection with him again and I feel like it is finally coming around slowly but surely. He melts my heart when he looks at me with those BIG, GORGEOUS eyes and gives me his most handsome smile! Those moments are truly what get me through each day. I can tell he is listening and understanding most of what we say even though he can't communicate back to me. Sometimes when I am talking to someone else about what he is doing or girls at school or something that he likes he will give a big cheeser like (yup she's talking bout me). Last night Zach got home from working (yes he started back last week and I miss him being home already!) and when he walked out of the room Dakota and I were in Dakota started crying. I said, "do you want daddy?" and he immediately stopped crying and just looked at me like yes! When Zach came in he smiled and then Zach was holding him on one couch and I was on the luv sac across the room. Dakota kept looking over at me and then making a sad face to Zach. Zach said, "do you want us to go sit by mommy?" He stopped his sad face immediately and smiled and looked at me. Zach came over and sat with me on the bean bag and Dakota just smiled got it! I can't imagine how frustrated that little mind is in there not being able to just use his words to tell us what he wants like he used to. But his eye contact and interactions with us are improving and that is way more important to me then if he ever walks again. I want to have that connection with us. I want him to be able to communicate with us, understand us, and just be happy. He is a lot more happy...smiling and laughing more and more...and like any parent...all I want is to know that he is happy!
We took him to go visit Zach's grandma the other day and he was SO cute with her. We put him in the bed next to her and I didn't think he would stay there very long but he totally just snuggled up next to her and was just chillin
Snugglin and happy

Just chillin and relaxin
Another huge thing is he is finally getting the rolling down and he is pretty proud of himself for that...and so is his mommy! He can't do a full log roll yet but he rolls from his tummy, to his side, to his front, back to his side, and back to his tummy. If he keeps his arm underneath his body when he rolls to his tummy he can make it back over to his back without much trouble. If he pulls his arm out from under him then he gets stuck. He will just lift his head and legs up and try to roll but is stuck (like superman). I am trying to teach him to bring his arms up by his head to get unstuck and he seems to be trying to more now but hasn't totally caught on.
Made it to his side

To his tummy

Headed back to his back
Stuck in Superman

Still proud of himself

Some more capturing the process...doing it even while he eats...that is skill baby!!
(One time he rolled so far over he pulled the whole g-tube out of his stomach while eating. We have to watch him a little more carefully when he eats not ;) )


got it!

The whole rolling thing is amazing though. He could roll from his tummy to back for a long time now but never from his back to tummy. Every once in awhile he would accidentally do it but it was a very rare moment and you could tell he wasn't quite sure how he did that. Then he seemed to do it purposefully a couple times and one morning he did it like 10 times in a row and then didn't do it for a couple weeks. Now it is like an all day thing. If you lay him on the ground he will almost always try to roll over immediately and he sometimes gets, this grin on his face like...yup...I'm the man...I can do this all by myself. I think it must feel so good to him to be able to do something with his body that he wants to do. He is still not coordinated with his hands and movements to grab toys and play like I know his little mind wants to do, so to be able to move his body how he wants has to feel pretty dang good. Imagine you being trapped in your body...not being able to move, grab things, itch, or whatever but wanting to so bad.
He is also moving his arms around a lot more and will reach up to something that I hold but still not super coordinated enough to have the control to grab it.

He started occupational therapy again up at Cache kids where he has his physical therapy. They are really cute and do fun things with him there but he sees OT and PT every other week so it's not enough to really change is still all up to us of course.

Swinging with PT

He LOVES the swing!

Working on his baseball skills


He loves going upside down on this ball...not sure why but he smiles every time!

OT making him use his legs to push him back.

So we still do his NACD therapy every day. I have my most AMAZING daily helpers/volunteers that come over every week to help me try and get all that I can in because most of his therapy program I need 4 hands and I only have 2 unfortunately. These woman that help me are amazing and Dakota and I truly couldn't do it without them. It is therapy for me too...I must confess...because I get some adult conversation while we do it and they probably hear and know more about me then they want to. ;) I enjoy the company though.
Making him hold his crawl position.

 Zach says I am a slave driver because I am ALWAYS doing therapy...but someones gotta do it and he never wants to be the bad guy so it is up to me. (I need more pics of the other things we do...this is an old one as you can see the Christmas tree in the background. Trust me my Christmas tree is not still up...although it wouldn't surprise me if it was ;) )

Zach just likes to do the fun stuff like snuggle and take naps together!
You can't blame him though! It looks pretty comfy and cozy to me!

And playing in the bath!

He is getting a lot stronger with his sit to stand which is of course building those leg muscles. When he wants to he pushes a lot better with his crawling exercises and is getting a lot more smooth with it. (Just like all kids he has days where he just doesn't want to do it and those days are a little frustrating but I understand he is a 3 year old and that is just how a 3 year old is). We started using pixie sticks as motivation...when he reaches the end of the crawling he gets a little taste and that has seemed to help motivate him. Kids love their candy! Overall, he has gained a lot more strength throughout  his whole body. He holds his head up a lot stronger but still doesn't quite have enough control to keep it up all the time but it has gotten much better.

We still go to swallow therapy in Logan once a week and he LOVES that! He gets lots of treats and is getting better at swallowing and sucking. Still has a way to go but improving none the less!
As far as the trach goes he is still capped all day (so breathing on his own, not using the trach) so that is great. Unfortunately he is still needing suctioned 1-3 times a day so we can't get the trach out until he can cough it all out on his own and no longer needs suctioned. He is coughing stronger and more often but for some reason he doesn't get it all up. Not totally sure why...if it's too thick, if trach is in the way of some of it, or what. He does keep his O2 (oxygen) stats up all day though so we don't have to suction him because of his o2 stats...more just because he coughs and coughs and it doesn't all clear and then he gets frustrated or if he is going to bed and I don't want all that staying in his lungs.
Not sure why but he is still needing oxygen most nights which means I am up 1-2 times a night turning it on at some point in the night or fixing the humidifier that he has knocked off of his trach.

He is still sleeping pretty good for the most part but waking up earlier lately. He still has nights (like the last week) where he will wake up in the night for some reason but for the most part he doesn't cry or anything just hangs out and moves around some and then goes back to sleep by himself so I don't have to get up with him...just check on him, change his diaper, suction him if he needs it, reposition him in bed, and then I go back to bed. Did I mention I LOVE sleep. I don't get a ton of it but I love it and need it or the emotions really shine through! ;) Whenever Zach and I think back to those months when his sleep cycle was SOOOO off...we really aren't sure how we survived those months. There were LOTS of tears and emotions and life was really crazy. I don't even like to think about it, but when I do it does make me grateful for where we are at today!

He is still liking preschool the 2 days that he goes and the girls are still loving him! ;) It makes me so happy that the kids are still so sweet and receptive to him especially because he cant give much back to them except his most amazing smile...which is killer I'm sure to the ladies! ;) His school nurses have told me that other kids that they go to school with, the other kids in their class and even teachers just kind of ignore them and expect the nurse to just do everything which is not there job. That makes me sad for those kids but SO grateful that Dakota has had great teachers and friends at school.

We have been able to get him off most of the meds he was on to where now he is on only 3 and one is just Prevacid that he will always have to have as long as he has the g-tube just to protect it.
In case you can't remember he was once on all of these!

So we have come a long way with that which is so nice. I'm not one of those anti-medicine people but I feel a lot better knowing that he doesn't have to have so much crap going into his body and affecting it in so many ways. Some of these he has been able to get off of just as his brain has healed and he has gotten better and some of the he has been able to get off of just from me making him healthy real food instead of the cans of formula he was on. We are hoping to start weaning him off of another one here pretty soon too!

We also received some exciting news last week that we are finally at the top of the list with the Medicaid waiver to get respite hours. Medicaid has a program for families with kids with trachs or on ventilators to receive free nursing hours to help give families a break. They can only have so many kids on it at a time so we have been on the waiting list since Dakota's accident. I didn't really ever think much about it because I hoped he would have the trach out by the time we would ever get it, so it wouldn't do much for us. Unfortunately we still have the trach but we can now have respite hours. So right now we get 40 hours a month to use however we want...during the day or night, date nights, or even if we wanted to go on vacation for a few days. The best part about it is I get to use the nursing company that goes to school with him and I LOVE his nurses and he seems to like them too. I feel completely comfortable leaving Dakota with them whereas the nurses we had at night in the beginning I would have never felt comfortable leaving Dakota alone with them. So it is great news. I am excited to be able to go to the temple more and just have a little time to myself knowing Dakota is in good hands...especially since Zach is working again and won't be around as much to help out. (I even get to go to woman's conference this year with all my sisters and mom!!! Can't wait!)
Zach started back to aerating this week and in mid April will start the landscaping full swing. He works really hard and long hours all summer so it will be nice to know I have help if I need it (not that the Friedlis don't help us out a ton already but I feel bad ALWAYS having to go to them).

Every day is still a little unpredictable with this kid. Just when we think we got a good pattern going on he throws us a curve ball and changes things up on us. He is always keeping us on our toes but we love him to death! We are so proud if his every accomplishment and continue to hope and pray for SO many more to come!

Daddy wants to wrestle you in the grass again!


  1. Oh Tessie! I LOVE that he is rolling. I haven't checked your blog in a bit and that is a huge step from last time. He is really looking more and more like himself every time you post pictures. You guys are amazing. Love ya. Sherri

  2. Tessie,
    You dont know me but I have been following your blog for awhile now. While our struggles are completely different, I feel they are similar in small ways. My som was born last May with an intestinal defect and has been in and out of the hospital since birth. We have no idea what his life will be like as he gets older and what to expect. I am his full time care giver and sometimes I womder how I can deal with this for the rest of my life. I always thought you had trials and then they ended, not lasted forever! I wish I could worry about "normal" kid stuff like temper tantrums etc instead of wondering about his health and well being. I feel your pain in a way and wish you the best of luck. Your little boy is so very lucky to have you as his mommy. You have inspired me and I know you inspire many others.

  3. What a wonderful update and beautiful progress! I just had to reach out to you and let you know that we still think of you and pray for your family every day. Merrick (my 3 1/2 year old) saw the picture of Dakota on your Christmas card. I told him "That's Dakota. He's our friend that we pray for" Now, every once in a while, he'll stop and ask, "Is Dakota my friend? Is he a big boy like me?", and I tell him yes. Well, he just started saying prayers on his own and doesn't want our help at all. Each time he remembers to say, "Bless Dakota" Or "Thank you for Dakota" without fail. I looked at my husband the first time and we just smiled. He remembers and wants to pray for Dakota on his own. We don't even know him but we love him!

  4. Hey girl, If you go to my blog there is a link to the girl that did the tabs on my blog. Her name is Camille Garrison. She charges like 25 to makeover your blog and she does a great job! Hugs to ya all!

  5. You are such an awesome Mom. Dakota and Zach are so lucky! Little Dakota has the cutest face ever and looks so snuggley!

  6. I love you Tessie. You amaze and inspire me. Love Julia

  7. I love that he is rolling more and that picture of his meds made me both sad and happy. It brought back so many memories of my the syringes into my G tube, the pill grinding and cutting, and having to write down what medicines when. I'm so glad to see he is only on 3 and Prevacid is my best friend, too! I remember in the hospital I rolled to one side and there was cheering and tears from all in the room. People take it for granted but it is a BIG DEAL and he should be so proud of himself!!