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Winter Springs into Summer and rushes to Fall!

Aw! It’s been awhile since we have posted. Finally we healed the wounded eye on our grizzly. We have done some exciting and not so exciting things.
The not so exciting things are not posted because they are not post worthy. Well that and one of us… Not saying who… Broke a toe… Anyway….

We found some cute comfy PJ’s for our little bear. He loves his PJ’s. I emailed the company and asked if I could have permission to post about them. They said I could. Here’s a couple photos however, not the best quality in the photo department but amazing quality in the product. I can’t see the colors fading soon. After a month they still look brand new and actually keep getting softer. Not that they are not soft to begin with.

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Then we saw these. Oh! So soft and cute and not so girly like all the other places we have looked…. THANK YOU LAZY ONE!

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In fact he had a very unhappy day and he could not be comforted… Storms were brewing. We put on nice clean LAZY ONE PJ’s and mask and gave him a foot bath. It kept him entertained and calmed him and he had the softest hands and feet too.

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Finally a smile. He moved closer to the foot spa tub and sat on the floor. He couldn’t resist putting his hands in either.

Then transitioning to warmer weather at school. Outdoor play time again. Kodiak loves climbing, slides, and swings.

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Not the best photo out there as others used their better cameras. But this night Kodi didn’t sleep his best before it. Then woke up several times that night and the night after slept all night.

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Then we realized he was in pain again and resorted back to the heavy duty mask and swaddle technique.

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There are PJ days as well when he’s in a bad mood. Thanks to LAZY ONE he looks cute in them.

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Kodiak’s in the largest kids size. I hope they will make a size 12 just like the size 10′s. But for now he’s covered. The larger boys and men’s sizes will be too big for this skinny kid.

Oh!!! We put them on when we went to a movie. We usually hit the latest ones because then he has had his meds and falls asleep and doesn’t disturb so many.

We went to the “Bears” movie. We had some good laughs and loved it too. As you can see we love bears, wolves and moose.

If you want some LAZY ONE PJ’s too… They have a website and a store at MALL OF AMERICA TOO! They have something for everyone there. Not just kids.

All for now. Keep your paws clean. And sleep well!

 

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Good news first or bad news first…

Don’t you just hate it when people ask you this? So my last post I said I would have some surprises… Well I do. But I have decided to address my post from December 20, 2012 first. It was raw. Well as a family we had hoped deep inside that the person we were referring to would get himself back on track. Maybe things would start over. That didn’t happen. Instead almost a year later he sent a text with a photo of his new marriage license. It hit us all like yet another wall. I know that I should be happy to be completely free from it all. Not really. I miss the old guy. The sweet nice one. But now my choice is I have to view this as a closure and move out of this strange hope. We have to change our hope to we hope he gets his life figured out. I have to say it rocked me much harder than I felt it should have. Why can’t divorce be on the same date of the wedding? Then it only ruins one day out of the year instead of two. Anyway, I’m writing this first because I’ve had some time to adjust and not feel so emotional about it. I’m now telling myself he was going to do what he was going to do. The sick part? Telling me by text and making me tell the kids. I always did have to clean up his messes. It’s really not fair. But for now we are just taking one day at a time. We are looking ahead to some fun things.

So that why I wrote this first. Put it all in the past. I can’t ignore what happened. But I had to find the right words.

Moving on to the fun and exciting things…

I have a new driver in the family. Permit was granted over a week ago and I don’t know what I was so afraid of…

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This has actually been fun! She is a champ. She has been driving in all kinds of conditions already. Snowy roads, blizzards in the dark, the interstate several times and around town including the lovely roundabouts. My dad was up and took her as well and had her parallel park a few times and back up and spin around in a parking lot. Today she was our chauffeur when we took Kodi to urgent care.

Kodiak decided to get to his eye again. It was looking grand yesterday and almost healed…. Now his head is all wrapped up. What we need is the face mask they mold and put on burn victims. Only as a mask like zoro. One that fits his sweet crooked little face and then put on a football helmet with a face guard so he can’t get anything off and his eye can heal…. I wonder if we could do that… I think I will call the doctors tomorrow and at least ask pros and cons.

I knew the bandage the doc put on today would not work as it was way too itchy. So I cut up a soft t-shirt to wrap his head on top of the bandage. This way the gauze would not be around his head and the coban would be on top of something softer. :-). This is not our first time wrapping the kids head.

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Good reason to go to urgent care? When he won’t let it heal? Yes!

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All wrapped up! But it’s itchy! I know it won’t stay on two days. We will be doing good to keep it on for 6 hours.

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Mama’s version is much kinder! All ready to eat? Yep let’s see 4 hours before he got it off!

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Eating is a distraction though! For now!

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So the other exciting news? Well it’s been years in the works? I wrote about it in November 2012. We were at a DeafBlind conference. They asked us to please come. Kodiak has piloted a few programs. But now we can finally say we have his new equipment. What it is?
Thanks to http://www.icanconnect.org
Apple, Perkins school for the blind, and many many others…. We have the following equipment for free:

iPad air and defender case
iPod and defender case
Freedom scientific focus 14 refresh able Braille reader.

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It doesn’t end there….now are also getting enrolled for free at the Hadley school for the blind at http://www.hadley.edu
This we way we will know how to help Kodiak learn and how to teach him about our almighty and wonderful God that can heal him. We can teach him God’s name. And how he sent his son to die for us so we can be healed.
We will not learn Braille by touch. But by sight. I know a little and I’m very excited.

So now I need to learn how to use this equipment. Also program music and let Kodi listen to it. He loves listening to low tones. I think he hears something with earbuds and men with low deep voices… Maybe the hitting will stop? I sure hope so. At least we have apple products so we understand all of that. There is an instruction manual in Braille… Oh, and in print for people unable to read Braille yet… :-)

Well I gotta go take my turn with the kid!!! :-)

 
 

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Updates get old… Even to me.

I feel like a broken record…. I get tired of my updates with nothing really improved…. Blah! Blah! Blah! My last post about doctors really was more about my frustration of not finding clear answers. But Kodiak had several more visits and another CT SCAN. I think by now my baby’s head is glowing. But no sign of infection. Just deviated septum and swelling that might be linked more to allergies. Yeah! Well! We just keep on trying to figure it out. In the mean time… It’s good it’s been very cold… Kodi had worn mittens to soften the blows he gives to his left eye. His open wound we keep patching up at night after he has gone to sleep. We keep trying new things. It works for a little bit until he realizes he can still find a way around our schemes.

In December we all went skiing and snowboarding while Kodi stayed with Nana and Papa. We had so much fun. I even went snowboarding for the second time. It went a little better than the first time. But my legs get so tired. Next time I will have to go first. Then ski last. Am I too old? I don’t know, but I will say I do enjoy winter and being out there versus sitting in a chalet watching people and playing cards. I was never one to just sit and watch others have all the fun. My nieces and kids were so encouraging and I think my brother and sister-in-law thought I was crazy. Oh! Well! I won’t give up on it yet.

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I thought this photo was so cool. Sitting at night on the hill looking down. Resting of course because I was exhausted. I decided to rest and cool off and get enough energy to continue down hill on my snowboard. I love winter!

Then our temps got real cold. The kids went back to school after winter break. And the next Monday and Tuesday it was way too cold to even venture outside long let alone walk to school. We had record lows with even colder windchill here in the upper Midwest. What an amazing time though. They kept getting up all night tossing a glass of water in the air… Also to feel the coldest temperatures they had ever felt. Of course no one slept. Ice formed all over the windows and doors. They took really cool photos of them.

Then people got sick. I lost my voice and still don’t have it completely back… Grrr! But there is some exciting news coming later this week. I will post about it after it happens. I’m so excited as it’s been years in the making!!!!

I’m hoping we see huge results with Kodi and communication! It’s the ONLY hint I will give for now! Oh! And I might have another helper! In the form of a human… :-)

My 3 babies that are snug a bugs in a rug… I dearly love you and hope you all sleep soundly!!!

For now I will leave you with some winter sunsets! Love them!

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Opps! Last one was a sunrise!

 
 

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Doctor triangle!!! I’m exhausted and stressed!

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I wish I could say how I feel right now. But, right now I can only think how Kodiak must feel. So I will state a few facts! The eye is NOT getting better. We went to another doctor, and tomorrow yet another. It goes like this:

Primary refers to special eye doctor, eye doctor refers to special sinus doctor. While on the phone with them in so many words I was told go to primary to be seen sooner! Grrrr! This is not a love/hate triangle! It’s a doctor triangle. (I LOVE ALL 3 of these doctors. This just shows the triangle) With all the technology out there why are they not doing a FaceTime conference call with the one amazing doctor showing the kid to the other two? Hello? Anyone else out there feel this craziness? So I’m under a great deal of stress to get my baby well! I’m sleep deprived and now missing parts of work. Oh! By the way I work for more wonderful doctors! :-) I’m in no way mad or frustrated with any doctors just the way things are operating! I’m severely sleep deprived and living of coffee and tea and my baby is only getting worse! Deep breath! NO TEARS!

Enough about me! I at least have the concept, knowledge and the profound privilege to have something my little DeafBlind guy does not have? I understand HOPE, I have strong faith and hope. I know what I hope for and what that reality is. I am able to learn about that hope because I can see and hear about it with my own eyes and ears. So any amount of suffering, either pain myself physically due to extreme lack of sleep or him head butting me…, or the torturous pain in my heart watching my little one suffer so much is endurable. It’s endurable due to the strong faith and hope I have. I have developed this faith, hope and my beliefs and gained strength from the true source of all I believe in. But what amazes me! What really floors me! What has me stand in awe is watching this little man suffer so deeply and yet can find things to giggle about. He knows nothing about his future. He doesn’t know how his life will be and our hope that we have for him and faith it will become a reality. He has no knowledge that these exist let alone will come true. So how can he giggle? What does he even have to think about? How can he find funny things in life when he can’t even see or hear? How can he even tease those around him? How can he continue to go on? Why when some have so much more in life and going for them are they willing and seeking to end it all?

I find tears flowing freely tonight! Very easily! Mostly due to exhaustion, stress, and frustration of this endless triangle. But I have hope! I know my little DEAFBLIND boy will see again. I know he will hear again! I know he will have perfect health and run all over the land free from all these troubles. Free from doctors and free from his silent and dark prison. He will swim with the fish in the lakes and oceans. He will chase butterflies, duckies and anything yellow. He will ride his own Kodiak grizzly and he will be leading all the animals and other children in song of praise to God for making him perfect! Isaiah 11:6-9 found @ JW.ORG

So we just endure and do our best to make him well. We endure this triangle until he’s completely healed. We seek help and hope the true healing will be soon. Revelation 21:4 I have hope and faith it will be very soon! It helps me smile! I’m happy for the most part! I love life! I can’t wait for it to be perfect! I can only wonder then does he know to trust me and does he feel confidence from my strong faith? Does he somehow know? Is he learning what we know?

I hope we get answers tomorrow!! And my little boy is at peace again! I love you Kodiak! I miss your brother being gone at Nana and Papa’s. You are in good hands with your sister too. We all love you! We continue to pray for you always! You are very precious and very dearly loved!

 
 

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Life can get to busy to even talk about!

We were on a roll with school and it all came to a screeching halt after we all got little colds. My parents came up and did some necessary repairs to things… Also new tires on my truck. But Kodi would not stop hitting his left eye. It got so bad and swollen we could not see his eyelashes anymore. I called the eye doctor and she said we need to keep putting his cool gel packs on all weekend to get swelling down. So that Friday night we had an all night party staying up and alternating the gel packs. Well I kicked out after midnight. My Symone and Colt said they would stay up and watch him. They watched movies in my bed. So I went downstairs on the couch. I guess it didn’t last all night but his eye did look a little bit better.
Our party began… And then I found this in the morning….

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That weekend we kept up the pace of cool gel packs… He loved it.

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Sorry to show the horror!!! I just want people to understand we try everything! We got swelling down and then were able to get drops in again. We were washing out eye several times a day along with medications and ointment. Slowly it was looking a little better! Then on a Saturday night we decided to begin giving him a med for OCD as one of his Doctors said to try. Help him sleep and hopefully help him stop hitting. Well we all finally got sleep. But he really didn’t seem better as far as his eye. Last Friday I was concerned that it still felt warm to the touch. We took him to his Pediatrician. We got him on another antibiotic as well. It has been a few days and our sleep is good! Wow! He is better at school and now 5 days on antibiotic he seems a little bit better. So it’s now time to share some fun things!

We had a beautiful fall. Already had our first snow on November 4th. Some photos….

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Kodiak on his bike at school… Love it!

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Walking with his cane!!!

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These photos at school… Very telling! He has different clothes on, so different days, notice the pattern and the way he is standing? Exactly the same. I learned something working with his spine doc today. Showing the photos and the fact he has scoliosis he’s putting his back in a position that feels ok. So he is probably taking a break and taking pressure off of a hip and areas of spine that might be getting tight or sore!!! Yeah! A scientific answer to why he might be doing that! He knows what he needs to feel better! Thanks to his wonderful staff at school for the photos. He’s actually telling us things by what he does exactly the same… :-)

Still waiting for his iPod and Braille reader. Also the moon is filling up again… LOL! You might not be laughing but my kids did. Well, sort of they did along with a groan!
All for now!

 
 

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Busy for weeks!

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It’s crazy how quickly the summer flew by. We had family visit from the southwest and the northeast coast. It was busy and we had so much fun.

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Another trip to the famous Mall Of America.

Disobeying the signs as family did Mini Golfing. But being DeafBlind I guess it’s ok right?

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Sporting a new hat that he HAD to have.

The kids had their first day of school and Kodi began going back to school 5 days a week now.
Some of Kodiak’s fun!

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Managing the playground on his own but closely monitored.

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Riding a peddle car… Where do we get one of these!!!

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Walking the hallway at school.

And this last weekend enjoying the cool, dry awesome fall weather.

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That was last night. Kodiak giggled the whole time!
Tonight is a full moon and we decided to get him to do some of the walking. He walked about 1.5 miles and then played on a playground and then wanted his stroller.

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It worked on this bright clear full moon! My little grizzly was fast a sleet at 8:20 pm! Just hope he stays asleep all night!

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Trip Home!

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So last Monday last week I met my parents half way to their home. The kids climbed in with them and left and I came home… Well it wasn’t THAT easy!
I signed to Kodi that I was going home and he and Symone and Colt were going to Nana and Papa’s home. He cried! So my 2 hour trip home was also crying. I missed my kids!
It was a tough night and to be honest I really don’t know what I did or how I got home. My mind was a million miles (and years) away! I didn’t sleep very well and went to work the next day. I learned that Kodi kept them up until 4:30 am… Hmmmmm!
So away I went to work and then to a meeting as usual after work and went out with amazing friends. Won’t list them but we had a nice time!
Them to work again the next day and I must have slept because my neck was out. It got so much worse as the day went along! I ended up not meeting friends instead I got beat up… Really a massage but way too sore still.
Ok to off to work on Thursday and then met 3 other moms and a cool little olive and wine shop. It was fun swapping stories. I actually slept that night!

Then to work Friday and I refuse to discuss that very strange work day. It was so unusual and weird. But it made the day go faster. Then I headed out of town to Mom and Dads. The music was cranked. Then when I got close to brothers I texted Symone and her two cousins met me at the end of the drive to hug me… Then I drove off to parents. Colt was in a camper and Kodi in with Nana.
Saturday afternoon was me chasing kids through the woods and countryside taking photos with my GOOD camera and not my iPhone. So it was a good time! Then the girls sang to us all. Papa took Abby and Colt fishing.
Sunday we chased some more and road on/drove the Ranger and had fun.

Some photos with chickens, some in trees and barns, some in fields of flowers.

We got home later last night. Then I worked part of a day and headed to Dr (ENT) today. Kodi needed a CT scan and he was perfectly still so he got these two new friends as a reward. Meet Elliot the elephant:

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And Monty the Moose:

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Well I forgot to explain the top photo! It’s the 5 G-Children… At the construction site.

Anyway! It was good for the kids. Not so much for me. I hate being alone! It’s way toooooo quiet!

Oh! It’s a real FULLMOON! Kodi is NOT wild! I think he just doesn’t feel to well. He loves his bed! I’m headed to mine now too! I’m so happy my kids are back!

 
 

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