Where have the days gone? Thank you to cute Shaylee Allred (one of my old primary girls who is now a beautiful young woman) for the cute texts asking me if I have updated my blog. She is a great reminder of what a slacker I have been at keeping up with Dakota's progress and letting all of you out there who are praying and keeping the faith know how those prayers are working. So thanks Shaylee and I will try to do better.
So to answer the question of where the days have gone...I thought I should document a day in the life of the Friedli's since even when my sisters came up to visit they had no idea what are days are like and what we do. I'm sure many of you are wondering what in the world could they be doing in that house all day long...well let me tell you...there is never a dull moment.
We are still working on any type of consistency we can get with this boy...especially in the nights. He is sleeping incredibly better then he did in the hospital but we still never know what the night will bring and that is probably one of the hardest things. I think we average 4 hours of sleep at night and not straight sleeping with all of the beeps, suctioning, feedings and meds (when we don't have a nurse), and of course wake times. I'm not complaining because over the last few weeks he has started to have some of the best nights he has EVER had since this all happened. These nights he will sleep from about 9p.m. to 7-9 a.m. These nights I can't thank God enough for not only letting Dakota be so peaceful and get the rest he needs but also Zach and I. These nights are becoming more frequent with averaging 2-3 a week right now. The other nights are just a mix of whatever he is wanting to do. Some nights he won't go to sleep til midnight, others he will just wake up at midnight and stay up for 3-4 hours. Some nights he may wake up twice for a couple hours, some mornings he will just decide to wake up at 4 or 5. You just never know. Right when we think there is a pattern he switches it up on us. So now whenever one of us tries to say, " I wonder if or I think..." we just cut each other and say..."you don't know so don't even try."
Once morning comes, whenever it may be, we go with it. Usually starts with some one on one with mom or dad of cuddling, reading, or just talking while he gets his feed. He gets his feeds 4 times a day about 5 hours apart. We have gotten creative with how we feed him since we didn't want an IV pole hanging out all around are house (we have enough medical equipment as it is these days).
Are fans have made perfect bag hangers whether we are feeding him in the living room, dining room, or are bedroom. (He does have a pole in his room for other stuff)
On top of the feedings he has meds scheduled 6 times throughout the day and night. (This has gone down so much in the past couple months. When we first got home from the hospital he had a med due almost every hour or two and it was all I could just to keep up on those.)
LOTS OF MEDS
Daddy giving the meds
Once the feeding is done and his tummy is settled we jump right into are day. Start out with a little massage therapy as we get all dressed and ready for the day...can't forget to put on his essential oils (yes we are into those). Getting ready for the day includes cleaning the trach and g-tube sight and of course all the other typical things like brushing teeth, washing face, doing the fohawk (hair), and putting on the clothes. It all takes longer then it used to when you don't have as much cooperation.
After he is ready the therapy begins whether it is me or a therapist or both. WE have finally got a good schedule going with therapy and it has been great to not have to do it ALL on our own, even though we still do things all throughout the day. It is nice to have others help out. Right now he is receiving physical therapy 3 times a week, occupational 2 times a week, and we are still working on the speech therapy being consistent. Right now it has only been once or twice a month but hopefully soon it will be a couple times a week. Poor kid doesn't get a break between the therapists and Zach and I but he is continually improving and the therapists are excited about the progress they are continuing to see, which excites me as well. Of course I am always wanting more and faster but I am working on being patient.
Me making him sit. He is getting a lot stronger with his head and trunk holding them longer and better. I am just holding his hands on the ground and he is keeping his trunk and head up on his own. He does best when we have a distraction to keep him happy and occupied. If I'm alone I use the T.V. which he has gotten very interested in again or toys.
Zach was being his entertainment while the therapist was here. What a cute dad Dakota has.
Besides his head and trunk control, he has started rolling pretty good from his side to back and even from his front to back. He is tolerating the therapy better and even smiling and laughing during it. His hands are getting so much more open and loose. (He used to keep them in a fist all the time) Now he is opening his hands, putting his pointer finger out, and just moving his fingers more. He has started to try harder to reach for things although his movements are not coordinated at all. If we put toys next to him laying down he just stares at them and starts moving and hitting them. I can see it in his little face and body how much he just wants to play and do what he used to do but his body just won't let him.
The biggest difference we have seen in him over these last couple weeks and especially last few days is his alertness and awareness. He is constantly looking around at whatever is going on in the room, whoever walks in, whoever talks, whatever toy we have, whatever it is he is paying attention to it and watching it. He is smiling and laughing like crazy these days. All you have to do is look at him funny and he smiles and may give you a little chuckle. He seems to me to be more like himself in ways...more happy, more aware, and just more Dakota. I just wish he could tell me what he was thinking or wanting and do what he wants his little body to do. I'm still waiting for that day. I know he has it in him.
He got a couple new things since last post. One of them is this stander that lets him stand and bare his weight, letting his body feel it.
He is not a huge fan of it so I have to be pretty entertaining while he is in it to keep him happy. He thinks I'm a pretty good dancer. :)
The most exciting thing that is new is he got a new valve that you put on his trach that allows him to breath in through the trach but not out. So he has to breath out of his mouth and nose. The cool part about this is the air now passes through his vocal cords so it lets him make sounds and cry out loud which he is loving and so are we.
It doesn't look much different but is just a cover on the end.
Before we got this he would make sounds but it was a lot harder and they were few and far between. When they put it on in the doctor's office I said, "Dakota now you can talk. It's easy now. Say aaaaaah." He sat there for a minute and then quietly did it and just got a cute smile on his face and did it again. He was pretty excited about it and so proud of himself. It's fun to see him get happy and excited about things. When he rolls over and we clap for him he just smiles like "Yup, I did it. I am a cool dude." I LOVE IT! He did so well at the doctor's with the valve on that instead of working him into it like they usually do they just wanted him to wear it all day and only take it off when he sleeps. This has been so great not only because we get to hear him talk but it puts pressure on his throat and instead of his spit dripping into his lungs and having constant secretions coming out his trach he just drools out his mouth and nose. That probably doesn't sound that great but it is MUCH better then going in his lungs and having to get suctioned and wiped constantly out his trach.
After lots of therapy and playing we get ready and head out to Logan in the late afternoon for his hyperbaric treatments. This usually takes a total of 3 hours with the driving and treatment. He only has 3 more of his 30 left and then we will decide what to do from there. He has definitely improved since we started but it is hard to know if it is just Dakota and his brain healing or if it is the hyperbaric treatments. We feel that once he started the treatments we started to see improvements quicker but it is still hard to tell. Both the doctor and us don't really know and really probably won't ever know for sure but it is hard to stop if it is. So we might take a short break (which is what they typically do) and start again but we will see.
Once we get home we do a little more therapy and start are evening ritual of a lavender enhanced bath (to induce that sleep :) ), cleaning the trach and g-tube for the second time, putting the essential oils on, brushing, jammies, etc.
Check out this sweet bath chair that his Poppy built for him. I don't know what we would do without it. Thanks Poppy!
After we are all ready for bed it is cuddle time on the giant lovesac that we got just for Dakota. We read a couple books, sing songs, say are prayers together and try and get this little boy to sleep. Sometimes it takes 20 min, sometimes hour, sometimes more. Before the accident we would just lay him in bed awake and he would go to bed all on his own...it is a completely different story now. It is more of an art. He has to not just fall asleep but be in the perfect state of sleep so that when we take him to his bed he doesn't wake up or going to bed is a no go. Trust me it has taken a lot of practice and perfection to get it down and even still we have nights where it takes several tries before he is in bed for the night (or until he decides to wake up :) ).
Once in bed Zach and I take a deep breath, give him his meds, clean up are mess for the day and then try and spend a little much needed time together. Having a child with a disability is a lot of work. So if you know someone that has a child with a disability give them a pat on the back or something. Before this I did not give enough credit to all of those parents out there who go through this. This has opened my eyes so much. When I see a child with a disability I see things completely different. I look within that child and wonder what they are really like, if I could take that disability away what would I see. I look at that parent with admiration and love because I know how hard it is and the sacrifices that they are making. I think the hardest part in all of this is all the people that didn't know Dakota before the accident...when they see Dakota they see a boy with a disability. They can't see the Dakota that is inside and what an AMAZING sweet, happy, fun, exciting boy that he is and that is hard. I think most people think that he has always been like that and then when they find out he just had the accident you see a change come over them. It's hard but I continue to pray with faith that everyone will see that little boy again. I know he is in there fighting to come out and I will keep fighting for him and giving him every chance that he deserves, no matter what it takes.
I haven't given up my faith and hope that Dakota can get better. There are times when I start to waiver and wonder but I am grateful for a loving Heavenly Father who understands and helps make up for my weakness. I read in Mark 9:14-29 today about the dad who brought his son with a "dumb spirit" to Christ to be healed and Christ said to him, "If thou canst believe, all things are possible to him that believeth." and the father said, "Lord, I believe; help thou mine unbelief." I feel like this father...I believe with all my heart that this is possible and that all things are through him but as time passes, my faith wants to waiver, but I am grateful for a loving Christ who will help me through my imperfections and my weakness and doesn't dwell on them but seeks to take my hand and help me through. I know that if it is God's will, Dakota will be healed. I pray that it is and thank all of you for your continued faith and prayers. As always we need them.
I'm starting to get a little nervous for these upcoming months. For one are nursing hours got cut to 24 hours, so instead of having a nurse for 8 hours a night 7 days a week we have a nurse for 6 hours, 4 nights a week. I am grateful for what we get but now it is up to Zach and I to get up in the night to suction, turn the oxygen on, give him the meds, and give him his feed. We can do it, we have had several nights where the nurse has been sick and couldn't come but it is hard. On top of that Zach is starting up his landscaping business again and is starting his aerating next week. I know someone has to work around here to pay the bills but it is sure nice to have him home all winter, especially through all of this. I know I can do it without him...he has been starting to leave and work on things with his inventions and landscaping these last couple weeks...and I have survived but it is sure nice to have his extra set of hands at my beckon call when I need them. He is such a hard worker though and despite his limitations with his eyesight he has never quite working hard to be the best provider, husband, and dad that he is for our family. He has a couple of inventions (tools) that he started working really hard on...figuring out all the ins and outs of patents, looking for manufacturers, shipping, etc. that he is continuing to pursue. It is amazing what he is capable of even without a perfect set of eyes. Dakota and I sure will miss having him home all day though.
Even just to snuggle with!
Last but not least...thanks to all of you for your continued comments, words of encouragement, support, love, prayers, and faith!!!!
D&C 6:36 "Look unto me in every thought; doubt not, fear not."
YOU GOT THIS DAKOTA!
Your truck is waiting for you to feed him more oatmeal! He is SOOO hungry! :)