Our Brother Kodiak

Round 5!

2010-02-16T16:33:00.003-06:00

Just to let you in on what has been going on... Kodi is still missing school but now was hospitalized again for the 5th time since October 2nd. His behavior and his lack of motivation and his episodes are all a huge cause of concern by all. From me as his mother, his family and extended family as well as all the nurses and doctors that have been involved and are currently working hard to relieve Kodi from the issues he faces. Pain, stress and trauma from events that were unavoidable to a degree. I want to thank some wonderful doctors that have caught some serious things with Kodi and who went to bat for him and showed and continue to show an unbelievable amount of compassion not only because of what happened to him and me but also because they do not write him off being a special case and then ignoring us. He is very important part of our family and we love him dearly. In no special order I want to thank Dr. Brian Cress, Dr. Barbara Malone, Dr. Tim Feyma, Dr. Wical, Dr. Norberg, Dr. Steven Haun, Dr. Patrick Graupman. You guys are what makes these stressfull situations be ok. It's so hard when you get the feeling doctors do not listen. You listen and take time that I know you want to spend doing something else. THANK YOU! When we left today and I saw Kodi give Dr. Feyma a hug... I thought back on that when we got home and he was smiling, it brought tears to my eyes. He can feel it when people care about him. You made it less traumatic. THANK YOU! Also some special nurses are Barb, Jessie at PICU and 4S sooo sorry you got bruises and soreness from his troubles... and there were others at Gillette and Children's in St. Paul I remember your faces but names are hard to remember, but non the less you made a nightmare feel easier. There were some other parents going through things with their children that I want to thank for their kindness too... Hope your children are doing ok.

I want to add... Symone and Colten were taken care of by friends because Nana and Papa had to help other family members in need. They were homesick but they had fun as well. Thank you all who helped with this crazy time.

Still not a good run!

2010-02-01T04:09:00.003-06:00

I'm not good at this... It's been too long since we have had our little boy. He was just in the hospital again for over a week and is expected to end up back in. He is having head pain and not walking, dizzy and nausiated. He is just not our little boy.

I want to thank Dr. Feyma, Dr. Wical, Dr. Cress, and all the nurses on the different floors, PICU and other units for caring and not giving up on finding his source of pain. This has been difficult for Kodi, me and all of you too. My other two kids are suffering in different ways. Stress and just having life kind of torn to pieces right now.

I wish I could go into detail however, it's better that I don't right now. I just want everyone who might look this up from the hospital staff etc all to know how much we appreciate that you are not giving up on my precious little boy.

It's been a long time

2009-11-05T12:04:00.001-06:00

Wow! It really has been a long time!

We have been so busy. I have a publisher to send our book off to tomorrow... Keep checking back for updates.

Kodi has been in hospital 3 times this last October because we could not find his source of pain. It all comes down to we think neuro nerve pain. Poor little guy! We are still trying to figure it out and he has missed most days in October of schooling.

At this time I want to give a special thank you to all the Doctors, Nurses, staff and other professionals including also Teacher and staff that deal with all my kids not just Kodi. They have been very helpful to our family this past month. It has been difficult to deal with him being non-verbal and knowing something is wrong.

Also we want to thank all our friends who have also been truly helpful. Our family as well was amazing.

Thank you all so much!

Heather

Eye Surgery - Success

2008-06-17T15:17:00.006-05:00

To all those who were wondering and did not get a personal email, note, or phone call - Kodiak's surgery was a success. We will find out later how much his vision actually improves. Thank you all for your support and concerns and sweet notes, comments, gifts etc.
The photo looks like it hurts but actually he really was not in pain. He was very sweet and mellow though. Now the patch is off and he is smiling when he's not sleeping.

Kelly, Julie and everyone @ MDS!

2008-06-04T22:09:00.003-05:00

I strongly feel this year was a success for Kodi. He is making huge progress. I really have high hopes for him next year. Thank you all so much for all your hard work. I know he is a challange but he just seems to find a way into your heart. Thank you all so much for all the TLC, encouragement and support. We are excited for the new things we can do this summer. Hope you all enjoy your summer.

We also want to thank all of Kodi's classmates for the special kindness and for trying to communicate with Kodi... I know it's hard to say "Hello" to someone that doesn't sign it back... Keep trying though as he may finally surprise you with a warm hello back an with a crooked little smile! You all are so precious to our family!!!

Congratulations to reaching a new level!

Mrs. Gallagher & her 2nd Grade Class

2008-06-04T21:56:00.005-05:00

Colten and I want to thank you for all the kindness you showed. I enjoyed 2 field trips with your class and got to know some of the kids better. Everyone was so sweet all year long and we want to thank you!

This kindness and support helped Colten work on reading harder. He even tries to show books to his little brother Kodiak. He said many of you in his class expressed kindness and support for Kodi. He really appreciates that and hopes you all have a great summer as you prepare for a new grade, school or classmates.

Congratulations 2nd Graders of Mrs. Gallaghers class!

Thank You! Mrs. Ida & her 4th grade Class.

2008-06-04T15:10:00.008-05:00

I want to forever thank Mrs. Ida and her 4th grade class for being so sweet to Symone this year. Also, for the beautiful surprise this afternoon. It's so nice to see how 4th graders can do so much to uplift the spirits of those around them. The message I try to convey to my kids, is to treat others with kindness. It is hard for them to see that people do not always do that. Especially when someone has a special need, some may feel the need to stare, laugh, make fun of, or just be rude. You showed a wonderful example of courage, friendship and a caring heart. In reading your cards I can see you view Symone's little brother Kodiak also as your friend. He will love the gifts and someday when we can communicate it to him we will be able to tell him how you raised money to give to the CHARGE Syndrome organization. That is very sweet.

You all will have a very different year next year going to very different schools and welcoming others to your classrooms. One thing I hope you all take with you is how you made a difference in someone's life. That someone even though he is loved and happy, is also very lonely in his own little world. Next time you see someone you maybe are even afraid to look at, try to look beyond the disabilty and get to know the person inside. You may find your best friend for life!

Alex, Ali, Annika, Avery, Bailey, Caitlan, Cheyenne, Connor, Erica, Gavin, Jeremy, Joey, Kate, Katie, Keenan, Lydia, Mackenzie, Mason, Michealm, Nick, R.J., Shayla, Sydney, Tom, Trevor, and Zammy

Congratulations 4th graders on a successful year.

Opps!

2008-03-05T19:42:00.001-06:00

Opps! Forgot to add... Please check out our new website and let us know what you think!
www.ourbrotherkodiak.com

Chow!

New Website

2008-03-05T15:23:00.002-06:00

I really never thought this would be possible. But now that we are online... We are another step closer for our book... I would really appreciate it, if you view our website, if you would take just a moment to vote on the bottom... This will help us determine if our book is worth the effort. Also if you would just drop a note and tell us what you think or the idea about any of this... The whole idea is to educate others about CHARGE Syndrome, deafblind and what that is like, and to show what sibs have to deal with also in any family with a child with any kind of special needs. We have many friends and family who also have a family member that is dealing with special needs in one form or another. Some more severe and some less but challenging regardless... Please keep encouraging them and keep them in your thoughts!

Learning ASL

2008-02-28T00:56:00.003-06:00

I got to tell you... this is not easy. Learning a new language is one thing but with ASL you also have to be extreemly animated and emotional. If you don't get the facial expressions down you will confuse one and all. Colten should be excellent at this. I guess he was just too exhausted to do anything other than the sign itself. I will have to drink tons of caffeine to get this one down. The next time you see me please don't think I'm weird if I do several eyebrow movements and frowns etc... I will just be practicing the facial expressions for ASL. Teee Hee!!

Introduction

2008-02-27T23:53:00.004-06:00

We don't have much of a life other than it is full of the daily grind and I don't mean making coffee...

Symone, now 9 1/2, is in 4th grade and will not settle for less than perfect scores on her school work. Colten, now 8, is finally giving his first Bible Reading March 4th. This is so huge as a month ago it took him almost 14 minutes to do that reading... Now he's under the 4 minutes. Kodiak well he's really what this is all about. We just went to our ASL class again... The teacher is deaf herself and is a fun teacher... Both Symme and Colt were yawning though... Kodi fell asleep in his classroom.

I am looking forward to posting comments here as then I don't feel like everyone has to get my boring emails...

More updates later. I'm sure there will be more exciteing news as we travel along this road called "life".