RSS

Lot’s of changes coming!

One thing we can’t talk about yet… But it involves going out EAST to the PERKINS SCHOOL FOR THE BLIND! We are so excited for this. We hope to come home with a new outlook on education for our little guy now an official teenager! If you want to help Go Fund Me and pass it on. 

Also Kodiak hurt that knee but now it’s all healed in time for school to begin. He will go to a new school this year. But he was going there some days last year and all summer. So he knows his classroom already. We are hoping for bigger improvement in communication now that he is exploring everything. He is getting into everything and some hazards. We need more communication. 

My oldest is now a CNA. She has a ton of changes and the middle one now driving? WOW! Taylor Swift sang “Never Grow Up” I want to sing it all the time. Life moves too fast. 

Hey! Some fun is to be had by all. At Nana & Papa’s we took annual photos of the kids. I took some cool shots that might just work for Symone’s Senior photos. All 5 kids did awesome and rode a Ranger and 4-wheeler a lot! Kodi loved the 4-wheeler rides from his siblings and cousins. Well I even gave him a ride! Wish we had something fun at home for him. 

So if he wasn’t on the 4-wheeler, ranger or swing he moved my mom’s dining room chairs away from the table and was walking for hours around and around her table or climbing up and down her stairs. He even would push that huge heavy table around the kitchen and dining room… Needless to say… He got many rides! 

   
    
    
  So summer is ending very fast! Very excited for the next upcoming things! 

 
 

Tags: , , , , , , , , ,

I need a break!

If it wasn’t bad already, things just keep happening. Just a few days after my last post I saw my other grandma for the last time in her little assisted living appertment. She got influenza b and ended up in the hospital. I don’t know how she survived the influenza but she did sort of. She got so weak and ended up in rehab. It was there they told us she was failing rapidly. She ended up going on Hospice and I was with as she took her last few breaths. She was an amazing grandma. I was happy to be there for my mom and her siblings. My grandma was 95. She was such a positive endearing person.  

 

I also got re-certified for CPR. This made me happy to get this again… Now to keep it up. 😁 this helped me get through some bad anniversaries. 

My son Colten passed his Drivers Ed. So soon we will go get that permit at the DMV and I will have another driver. But first get through all the graduation parties. 

We have had little campfires. We have had friends over. Kids have played ultimate frisbee, baseball, dancing, etc. We have had some fun times. Kodi had some fun times this last school year.  

 

I’m really not sure what this activity is… But the marker on top with the X tells him how many more times he has to do it.

 
He bruised his knee and so they let him get a ride. He found a way to entertain himself with the ball and stay in the stroller.

  

And exploring trees… He does seem to love them.

  

And then holding a fluffy bunny. He is not a cat lover. He does like dogs and horses. By the look on his face I believe he now loves bunnies…    So underneath his sweatshirt he has a little invention communication device. His intervenor did a great job inventing. 

Last day of school and its graduation from grade school. Now no more grade school kids for me.  Almost 3 teenagers. I’m scared. We were glad Nana was here for the last day of school. Kids were so happy to have their Nana. 

Kodi had his hearing test only to learn we need to do the sedated hearing test and MRI to see if he even has the nerve allowing him to hear. However, he did smile during the bone conduction hearing test. He actually didn’t cry.  We met with the doctor involved in this trial and we will see where it will go from here. 

My oldest began CNA classes after school ended. So now her schedule is very crazy. She is feeling quite stressed and worried. Then she will begin clinicals. My second is trying to get some lawn mowing jobs so he can make some money. And well Kodi is just flat out challenging everyone.

Last Friday we went to MOA to look for some cheep graduation things for my daughters Senior photos… Hmm! Fun. Kodi was having a blast running through the mall. Our event was successful. 

Saturday afternoon we went to a graduation party. It was a nice summer day. And Kodi was enjoying a new place to explore outside. Around 8:15 he got his meds and my daughter was somewhere else and Colt was goofing off with Kodi. Then brought him back to me. Kodi was calmer and standing there while I was trying to contact Symone. He let go of my hand and bolted off giggling and laughing. He ran right into a retaining wall with boulders and bushes etc. Everything was all ok except he had some scratches and bruises. Or so I thought. He was laughing and when I finally got him up and rolled to his back on the driveway I realized his left knee was cut wide open to the bone. The 1 1/2 inch cut wasn’t bleeding much so you could easily see it. I held it shut with my fingers calling for help. My friends got their first aide kit and I patched him up. We loaded him up and took him to ER. 

   
 He was still laughing. When we got there they quickly got numbing cream on him. They were efficient in getting s wound sutured up. 2 dissolving internal stitches. Then 5 outer ones. We discussed how we were going to keep his leg immobile. Knowing my kid I wanted a cast. Just for a few days. But they refused. They gave me a knee imobilizer that I knew he would get off. This meant round the clock care from us by having someone be up with him. We didn’t get home until about 1:30 am. Colt said he would stay up with him so we could sleep. 

   
 
Sunday am I woke up to Colt yelling that Kodi got the splint off and I asked if the stitches were still good. He looked and NOPE! They were popped. At least the top 5. So I called the ER. We were told to come in and they. Would try to resuture them. When we got there we had to wait. They didn’t put numbing cream on. We just had to wait. Then in the room we still waited. Finally, when the nurse practioner came in we talked. They did put numbing cream on again and we had to wait more. They would not suture it but put aquacel on it and the brace back on with referral to wound and Skin integrity specialists. So I felt agrivated, sick and frustrated. 

 
   

   

         

The next day I called the people and they informed me that he needed to come in. That they could have done something more the day before but now it is to late and we now have to go down this road of possibly 3 to 6 weeks with high risk of infection now. I felt sick. And for the first time since his injury almost in a state of shock. I almost felt panic. It makes me sick that you put your trust to have someone call in the specialists and they use wording like “suture intolerant” that was misinterpreted to mean an allergy to the materials vs “he bent his knee and popped the sutures out!” Oh and they also were not told that it was cut to the bone. Seriously I felt as though she just didn’t want to touch my son. I was asked “please tell me she removed the sutures that no longer held?” I said “yes but only after I said ‘either remove them or give me something to do so’…” I was very upset. My kids were upset and Kodi was very persistent to get that brace off. It’s all he wanted. Poor little guy! 

   
 
So today we got some amazing news. First his wound is not infected. It was cleaned as well as possible. It is looking amazing since Sunday. But then he also has not bent his knee. After listening to our experience, learning about the Houdini we have on our hands we devised a plan. She wanted to use a product that works and does amazing things with wounds. 

  

   

So the benefits of bees… And if he gets it off and eats it all that is in it is honey and seaweed. The bandage is made out of silicone so it sticks but does not break down the skin. And you understand the scissors. We cut two “v’s” opposite of each other and it makes it so you can bend your knee. So he can now bend his knee. We will do this every couple of days. The honey looks like honey comb. It’s the coolest thing!!! We measured his wound and depth. We will do this again to make sure it’s healing. We go back in two weeks or sooner if it’s having issues. If he gets a fever or other infection signs we will go see his primary doctor. 

After consulting with her we agreed let him try without the brace. Let him bend as tolerated. Yes it will pull but the honey will make things soft and help new skin to form. However, the whole way home he tried to get at it. We got home and he took a chunk out of the bandage but thankfully it was still covered. I just used tape and gause to cover the remaining area as reinforcement. Put his PJ’s on and taped above and below just so he can’t get his hand under the tape. This way he can’t get the pants up or down. Well he tries to get the tape off…. But we have time that way to stop him. 

   

I’m on this shift at midnight… allowing Colt to sleep while waiting to the clock to strike 1:30 am. Then he will get up and watch until 5:00. My mom is a morning person and said she will do the 5:00 until his lovely sweet dear PCA comes. Colt will sleep. Both Symone and I will be off to school or work. Colten heard this might go on for weeks and he said “I’m going to become nocturnal..” Almost like he was really excited about that. 

I could not find the time to blog… But now since I have to stay awake… I decided to use this time to email friends, blog and take care of things needed. I’m excited to see how these products work. If this kid avoids infection, heals quickly then I will write them with his story. 

We have other things in the works. The thing is I can’t talk about them just yet. I will try to update more often. 

  

 

Tags: , ,

Medical March Madness! 

I feel like we all have Doctors appointments bunched up. March madness? Maybe! Do you have family members doctors appointments all stack up same time of year? One time I tried to change it by just making appointments  later and later. But suddenly we are back there again. 

I think it all began when spring break started. My little Kodiak decided he was done getting bounced on the trampoline at SkyZone.  

   

We were getting a video of the two of us when he had just signed “finished”. I thought “we will be quick.”  Well, I should have listened. He ended up trying to headbutted me. Then I was trying to get away, he got me real good on the inside of my right shin and lower calf. I got ice on it quickly but it’s never stopped hurting. The video makes me cringe all over again.

 

That was February 27. An X-ray a week later showed no fracture! But the pain was no better. So now 2 times to therapy for ultrasound and massage to get it healed sooner. Alternating heat 2 minutes to ice 1 minute several times a day while its elevated. Oh the pain that grizzly caused me!

All three kids saw the dentist. One needs a filling and one needs all 4 wisdom teeth pulled. Then the one now lacking wisdom went and got all infected in one tooth. My poor Symme Indy. 

   
   

What a cute swollen face! 

Let’s see on to the spine part.
   
Spine looking better!!!! Well all of Kodiaks therapy is helping to keep scoliosis from getting worse in fact it’s improved and we don’t need a brace!

And check out these new tracking devices… They always know where their patient is. 

 

 Even big brother Colt got one when he was seen for old fracture gone wrong.

  

My grizzly wild and free no where near sleep but entertaining himself in his room. At least not as crazy wild anymore.

   
   
After one of the wild crazy nights when he finally crashed and big brother did too after his turn to stay up with the wild grizzly! 

  

Let’s see… The next part wasn’t so fun. My parents flew to Arizona to be with my dads sister that was losing her battle with cancer. Her cancer won March 20th. Then just 4 days later their mom (my grandma on dads side) also died. Wow! Talk about getting slammed.  

 My grandma on the right just died at 91. My grandma on the left will be 96 in September. We drove down there and spent much needed time with family.   

  

Late night drive on a full moon. Wild man was quieter because we were in the truck. Symme drove the last 2 hours. My middle kid is taller than my old kid… 

 

Flowers were beautiful…  

 

Kodiak had some good times outside. By a huge log at Nana and Papa’s house. 

   

 

It Just doesn’t end. Colt got stomach flu, I got some weird bug, my other two got weird things… I just want to stand up and scream STOP! Go outside get fresh air, and some sun. Get rid of those bugs!  

  

Kodiak got some things from WTR in the mail. It was so sweet. Look at that smile on his face! Go see a rodeo if you can. It’s some good clean fun.

  

My Colt also had an eye that got some weird inflammation in it. Probably from shop class. So now he has drops to keep putting in. Both kids need glasses and Symme got contacts again.  

 Now I can see those mischievous eyes again!

But then getting gas I popped my neck out. My Kodiak isn’t sleeping and I’m ready to cry I’m so exhausted. He pulled his 40 hours of no sleep again. It drives us crazy. We really have not recovered. But my leg is almost healed… I might go running again here soon… Still a little sore. I was kicked my my horse once but I sware my baby’s head was way harder.   

Hey! We had a difficult few weeks. But we also had a little fun. And now my middle one is in Drivers Ed and my neice got her permit! Kids grow up so fast! Where did time go!

 

Tags: , , , , , , , , , , ,

Issues of a DeafBlind CHARGEr! 911! Well almost!

You know I could list all kinds of things that are obvious. I could share what everyone knows and is obvious. But this is only about one HUGE pet peeve of mine that really really grosses me out! And HOW do you let him safely know that THIS was a huge “no no”.

Bad behavior returns again!

Last week I came home to my son getting his clothes off and standing in poo. Now he did it again. He ate his supper and while we were all getting ready to leave (I say getting ready as in changing clothes etc) he wondered off to his room… Nothing wrong there, he has freedoms… But he took his clothes off and well… The visual you don’t need and a the smell was awful. And he was acting like he was so proud of his gross mess. You got it! Now this is old behavior resurfacing and he things is so funny because he gets attention and of course gets a shower because I refuse to allow a child sit in disgusting germ filled messy poo! So to a kid that LOVES water and baths how does he know what he did is wrong? I can’t make it a cold shower. That is cruel. But honestly for months he’s gone into the bathroom, or told someone by pulling us to the bathroom or just go in his pull-up if he couldn’t make it.

THIS is one HUGE reason I HATE carpet!!! I’m so grossed out after cleaning it up. The kids helped by getting him showered. He learned last week that this is so funny. That if he makes a mess then he gets a shower or better yet a bath. I have to break this and FAST. I’m so ready to rip out the carpet in my new place and just have whatever flooring is there exist. Seriously! I just CAN’T do this.

My other issue is we can’t just let him go into the bathroom by himself. He floods things! Been there done that! So SOMETHING has to get figured out right away. He loves water so when he walks in the bathroom he plays in the sink and toilet if we are not right there.

You see my dilemma. Perkins now what! Please help. Dr van Dijk? Any ideas? Anyone?

I just want to cry! I’m going crazy and need to stop this NOW!

Sorry for no photos but I don’t think anyone would like to see the mess that was made 😉

IMG_0594

 
 

Tags: , , , ,

I NEED A SLEEPCATION!

Ok! Well we all know vacations are supposed to refresh you and give you a break from your busy and crazy life. All too often people end up living it up on vacation and then needing a vacation to recoup from their vacation. Well I decided for about 13 years now I have been completely sleep deprived. Here are just a few of the recaps:

Extremely loud snoring husband… Well THAT issue ended almost 5 years ago. No more of that racket!

Kodiak’s apnea monitor and oximeter that he had been hooked up to his first 2 years of life. Well he no longer needed that as he grew out of it. Whew! That deep shallow breathing he did every night? Almost killed me.

The noisy street we lived on that was the main route for all 911 calls 24/7? We moved. Yeah! It’s so quiet here!

The bright lights of the city… Also fixed… I have the darkest shades on my bedroom windows ever… Black out! Yes!

The all night party animal that roams the house creating chaos? Well? We have contained him to his bedroom at night at least, to keep him and us all safe. Yes this is Kodiak. He stays in his den. However, he still gets up! He wrecks his room and is so loud. He sounds like a bucking bronco or a grizzly banging or kicking the gate. Then he growls, screeches and carries on all the while laughing and being a sweet little menace. Ho! Hum! Sleep still alludes me.

Then every 28 days or so the moon decides to become very very full. For some reason I can only express in humor because no one actually will do a study on the effect the moon has on sleep and crazy behavior. However, I live with it every month people. This IS a FACT. This child becomes like a wild crazy stallion, Kicking, stomping, and turns into a gorilla doing silly things and making himself laugh. Then he turns into a trumpeting elephant and crashing things around him. But then when HE crashes after hours of this crazy, he acts somewhat like a wounded grizzly or billy goat. He headbutts, scratches, slaps, kicks, and lashes out and makes a fist and says GRRRRRRR!

I’m telling you. I just get a full night of sleep and start to feel all energetic and full of life. My body loves it so much and craves it, and then the monster pulls these all nighters. Even if it’s quiet and I get sleep, the pattern of waking up when he was all wild just sends out signals to my brain something is amiss. My brain then makes me dream the kind of dreams that are terrifying and makes me think something happened so I jump awake wondering what happened only to realize all is well. But now because my heart is racing like wild mustangs I can’t fall asleep.

When people talk about going on vacations…I just think about all the work involved… Wash clothes, fold clothes, pack clothes for 4, prepare food, travel (drive because Kodiak can’t fly) and then get there and not be in a safe place. My kid wakes the family, friends or other guests in motels, their homes or campgrounds. So I feel a level of stress… I can’t fall completely asleep because he might get away… I’m always on guard!

Vacations have no appeal to me. I feel very selfish even saying this but sometimes I would love a gift of sleep. One week of someone else taking care of all my responsibilities. Take care of all my kids. And send me to a resort that is designed to help you, make you and let you just sleep. I wonder if there even is such a thing? Maybe I should start something like this. I wonder how many parents or caregivers of special needs kids or family members out there would also enjoy something so sweet as this. Is this just a dream? Is this reality?

Hmmm! I’m doing research and will get back to you on this… In the meantime… Let me hear your ideas…. You can email, comment or send ideas to my PO Box

Seriously, there has to be something for us parents or caregivers so we can get caught up on much needed sleep. And do our most important job as parents to our best of abilities. 😴😴😴😴

IMG_4425

As I drift off to the sound Kodiak is making…. What? Gotta go see what is up now…

 
 

Tags: , , , , , , , , , , , , ,

Hudson Hot Air Affair Part 3

Well, this afternoon was still not safe to launch balloons. We came back home feeling disappointed. But since the two older kids were not feeling well, most took naps.

Then they came to me and said “Can we just drive by the moonglow and field of fire?” Kodi was all for it. He was tired of lazy napping sick people.

(Click on highlighted words — it takes you there)

IMG_1916

IMG_4350

So we drove there. Good grief! So many cars and people everywhere from all over. Symone decided she just wanted to drive around in the truck with Kodi so I could just go get video’s and photos. She was cold and really felt crummy. We switched drivers and Colt and I headed towards the field. We walked by the ambulance, EMS and Fire trucks and fire fighters. It was a reminder of what could go wrong. I’m thankful we have these people that can do these jobs. (Sorry for blurry photo I really didn’t want to get firefighters in the photo. Don’t want to upset anyone)

IMG_1910

First off Colt and I met up with the dragons. my video of the ART brought to you by www.uwrf.edu/art Click on those here: video 1, video 2 & video 3.
Three fire breathing dragons!

We watched a balloon fill up and then light up. So cool!

IMG_4357

As more balloons inflated it was getting so cool to see and somehow felt warmer.

IMG_4363-0

IMG_4360

We watched one from start to finish in the dark. I Tried to record it. Click here to watch! Amazingly enough when other balloons would light up you could see people on the outside of the balloon as the one we were watching was getting filled with hair. Then they added the flame and it started to lift up. It’s always so much fun to see this. Science in action!

Symone could not find parking anywhere so Colt met her and brought Kodi to me. I had Kodiak with me while they took the truck to go park further away. They forgot to give me Kodi’s coat. But amazingly enough I was just in my sweatshirt and he was as well and it didn’t feel all that cold still. In the middle of all the balloons it actually felt ok. Just me and my little DeafBlind kiddo.

IMG_4365

IMG_4367

IMG_4368

IMG_4370

I only wished my little man could see these balloons. He loved these kinds of things before. He loved lights and colors. He loved moving lights, fire and balloons! Maybe this is why we keep doing the things we know he loved to do at one time. It’s like we are recreating the events so he has something to help him recall those colors. He was so happy. He didn’t want to hold on to me. He was just dancing and flapping his arms. He was giggling and having fun feeling the crunchy snow and ice on the ground under his feet.

After several phone calls & texts from family and friends, I finally tried reaching my kids. They finally found parking and we’re walking to where Kodiak and I were. It was so dark. Then 5…4…3…2…1 and the dark noisy world would light up with color and for about 30 seconds to a minute. You would have that time to soak it up and quickly take it all in. You could see and feel the heat. Oh and also try to find your kids!

The weird thing was, they called me and were so close but we couldn’t find each other. It was dark and you almost have to wait until the pilots light up again to look. Kodi was starting to get cold. The balloons lit up and we found each other and Kodi got his coat on. He was so sweet. Symone was feeling so sick but so glad she got out to stand in the center and watch them light up.

We got some family shots!

IMG_4372

IMG_4373

IMG_4379

IMG_4384

IMG_4385

IMG_4386

IMG_4382

Thank you HHAA for not just a torch light. I know it all depended on the weather. But it was fun to see some balloons today. Even though there was no launch it was fun. It reminds me of other things people do in life where some think it’s crazy… You get up early in search of the perfect photo… But it’s also in hope of seeing something or something amazing happens.

Others that get called crazy:

Hunters that go out in all kinds of weather… But see or get nothing. Yet they continue to go out in the hopes of the big story.

Fisherman can take in all of their surroundings either wading up a river or in a boat all day in hopes of catching the “big one” only to set it free and have a great story to tell.

Rodeo participants that put themselves in harms way to seek the rides that help them make it big. And stories to tell!

Firefighters that run into burning buildings in hopes to save a life when others are running away. More nobel than the others but the thrill is still there.

Cancer patients that seek treatments in hope that something works because sometimes it does. They don’t desire or lose that will to live until quality of life fails. But even then if guaranteed 100 percent cure they would take it.

It shows we all live for the good brief moments we have in life. If we stop living for those moments now we are in trouble and need to seek help. My family lives for the BIG one. The REAL one. Yes these brief moments are so thrilling to us. It reminds us over and over of what is yet to come. The day my little boy can see, hear and have a perfect normal life right here on earth with no more sickness, pain, sadness and he can tell me all those stories I have yet to hear from him…. That’s the real one! The big moment that will last forever! I know we are so close to seeing it so soon!

Don’t stop living for those moments that make you happy. I don’t mean things that allow for deteriorating health and addictions. Stay away from that trap! I mean do the things that give you a sense that you are alive. If you dreamed of climbing a mountain but you don’t have the ability or the means? Find a little hill and do it. If you are lonely and feel all alone? Go visit someone in a nursing home and sing them a little song and bring them a flower. Their smile will touch you in a good way. If you find yourself fighting for life either due to illness or mentally? Remember this, God loves you, he cares for you, he wants the best for you, he provided a manual for you to live by and he won’t forget you if you should die. He will restore you to life right here again to fulfill his purpose for the earth. So each day, search for Him. Don’t give up. Look for meaning and little things that can bring you joy. HE can be found.

I hope this experience put a little smile of hope on your day!

You can find answers to so many of life’s questions on JW.ORG

 

Tags: , , , , , , , , , , , , , , , , , , ,

Hudson Hot Air Affair 2015 Part 2

IMG_0397

My photo from 2 years ago… Sorry it’s really the best I have right now. But let me share our timeline so you will see why we enjoy this so much.

Alarm goes off 5:30 am
I check the weather on my weather bug app, clear skies, 24 degrees, wind speed is 5 MPH

I check on Facebook and the website. Looking good the launch. I text two oldest kids “let’s go”

IMG_1862

No one answers but I hear them scurry to get up.

It’s now 5:40 am. I jump outa bed and get dressed. Gather up our things and get clothes for Kodiak. We grab his MEDS and blankets and pillow. Symone made him a bed in the back seat of our expedition.

IMG_4321

Then she made herself one.

IMG_4322

We leave at 6:10 am. Colt is my co-captain today.

IMG_4323

Both Colt and Symone are sick. I just hope I don’t get it and Kodi stays healthy too.

We drive to Caribou to get hot chocolate (Colt) and apple cider (Symone) and coffee for me. Then head to our favorite spot by EP Rock school. 😉

Wow this year at 6:30 am other cars are all lining up as well. It dark and you’d wonder why people are sitting in their cars freezing all lined up. Just wait! Already several teams are pulling onto the field and selecting the best spot for their balloon launch. I plan to get up close and personal today. I want to show the flame so you feel the heat and record some sounds. It’s a sound you learn to hear and know exactly what it is. Like a buck snort, owl hoot, bear growl, farm animals…. You get the point!

Just announced at 7:01am that the decision will be made shortly. The weather conditions keep changing.

IMG_4328

7:20 the trucks, trailers and crew are pulling on to the field. But no decision announced yet!!!

7:25 some crews are pulling baskets out and setting up

7:35 still waiting but more showing up

I got photo and video of one ballon tethered… Watch UP CLOSE!

The best I could do… A photo or two…

IMG_4337

IMG_4340

7:48 headed back home disappointed. And Symone not feeling well but wearing a sweatshirt from the last weekends rodeo. (See earlier post)

IMG_4346

Now my stickies!!! All back in bed or sleeping on the couch.

IMG_4347

Check back here after 3:00. We will be headed to that launch and will post more hopefully!

 

Tags: , , , , , , , , , ,

 
Follow

Get every new post delivered to your Inbox.

Join 185 other followers