My first CB blog from Gillette!

posted in: Kodiak My Little Grizzly | 2

The following is posts I had other places… that show some of the worst things we went through… However… I could not possibly describe how horrific this really was… So understand as bad as this all was… it is actually very watered down… Please understand we tried everything to help this kid.  It was the worst time and I hope Kodi can block it out… but it was the beginning of the end of his vision… and that process proved to be quite painful… This reading is not for the faint of heart or small children…

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We had no idea what was wrong with Kodi when he was born.  He was diagnosed within 24 hours with CHARGE Syndrome.  It has been a difficult ride.  We got him past 1 year old and we were so excited.  Then when he turned 5 we thought the worst was over.  He was progressing and doing so well.  He went 2 years to MDS (school).  This really got him advancing well.  He also had therapy.  Our insurance cut him off.  Then in September he started school back here.  October 2nd 2009 I got a call from school to come and pick him up.  He was not doing well.  He has not improved since.  He had been signing about 10 signs, sorting colors, using his cute little blind cane, being mischievous with washing his toys in the tub and ruining them (electronic does not mix with water), climbing my kitchen cabinets and putting dirty dishes away were they go (just not washed), getting in the fridge to look for his favorite chocolate yogurt, opening and closing the doors in our house, turning on and off our lights at all hours of the day and night, playing with his balloons, stripping down and getting in the tub wanting to get a bath, coming to me when he needed a diaper change and pulling on me, watching me cook in the kitchen and wanting to see what kind of food was there, running and dancing and twirling in circles, giggling and laughing and being silly and watching his favorite baby Einstein movies, teasing the teachers by riding his trike right up to the line he was not supposed to cross… Just to see what would happen… and the list goes on and on….
This all stopped and he just stays put were we put him and he jerks constantly and in the process has done some very bad damage to his body.  The worst was here in January.  He caused severe damage to his head and eyes.  Yes Kodi is DeafBlind but he also could see something.  Now this precious little kid is losing what little vision he has.  My sweet happy little guy is not there anymore.  He has been hospitalized now 5 times….I’m so sad for him.  I wish I could make him better…  He has some amazing and caring Doctors… Thank you all you doctors, nurses, and everyone for helping with our hospitalizations and extended stays…

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posted by Heather English, Sunday, January 31, 2010, 1:45 PM
I have decided to organize my updates from here on out by the date of event… This will keep it more organized.

Kodi had an ICP wire (inter cranial pressure wire) surgically implanted into the top right side of his scull in hairline near the front of his head on Monday Jan 25th. As it was inserted the pressure read 15 (high end of normal) then when his head was moved it shot up to 40. But then in PICU from Monday night to Tuesday it was constantly going up and down. However, on Monday evening he did have a seizure. Tuesday afternoon the wire was removed without being put out… Mom and I watched… Interesting!

On Tuesday evening he was taken to epleptic unit at Children’s hospital to put him on an extended EEG. There were no seizures. But tons of jerking. My parents were wonderful. Then Friday the neurologist came back and explained what was going to happen and what we needed to do. Doctors are trying to figure out what to do next!

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To Answer Questions…

posted by Heather English on Monday, February 1, 2010

Why?
posted by Heather English, Sunday, January 31, 2010, 9:30 AM
I was encouraged by a close family friend (adopted as part of our family) to set this up. She did so when she was very concerned about her cancer taking over. She is stable right now and doesn’t use it at the moment. I am now in a position of needing to figure out what to do for my kids. My precious baby Kodi has been living in pain for sure since October 2nd 2009. I think we are getting close to finding out what is going to happen here. I was told on Friday the 29th to go home and rest and that his violent attacks on himself will progress again. At that point I will need to get him to Gillette ASAP.This is to post the updates, allow others to communicate to us, and organize help that my children might need. My parents have tickets to visit my dads mother and sister both of which are not well in Arizona… I strongly encouraged them to not cancel that trip. However I know they are very torn. This will give them some reassurance that the kids and I will be ok. So I really appreciate all of you and thank you all for your kindness, encouragement, prayers, and help.
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Few more answers

posted by Heather English, Monday, February 1, 2010, 2:30 PM

Today we went to eye doctor again… Right eye:The swelling behind his implant (cataract surgery 2 years ago) is clearing up. He hit it so much he caused the implant to move in his eye… Inflamation resulted. Left Eye: That is still dilated although reacting more, finally and still signs of hemoraging inside the eye itself from hitting it. Looking better as well.
Neurologist Dr. Feyma feels Kodi’s pressure is the problem as I said… Very hesitant to rush to put in a shunt. Would like me to try Diomox again and stay on small dose so he does not lose weight or get dehydrated to see if it would be enough to stabalize him. He is trying everything possible to avoid surgeries. Our goal is to not let him get to the point he was at and to get him help quickly if he does. Today he ate little breakfast and just sits there. Blank stare, occasionally the corners of his mouth twitch upward. He has sad sweet little eyes.On the 22 of this month if Kodi is not in the hospital he is having a surgery to take out ear tube (finally) and to scope his stomache again just to see what is up, if there is anything. Another thing to rule out.Sorry to bore you but it’s just all part of our days… these sad little days…

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Written Feb 15, 2010 1:03am

Since October 2nd, 2009 Kodi has not been himself.  We are currently at his 5th hospital stay since then.  Neurologist like Dr. Feyma and Dr. Wical are working hard to figure him out.  Also Dr. Graupman, Dr. Haun are incredible at how they are trying as well to get Kodiak the best care.  Thank you Doctors and nurses and staff for all your caring and frustration you may have had while caring for my precious little guy!  I really love my little kids.
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Written Feb 16, 2010 4:58pm

Thank you Barb at/and PICU, Jessie at 4S for your kindness and also for caring.  I remember your names as we had you the most.  Also you got beat up the most by my little guy.  But all the staff there was wonderful… Thank you so much!I want to thank Dr. Steven Haun and Dr. Norberg for finding the drug mix up so quickly.  Also I want to thank Dr. Tim Feyma for such kindness to Kodi.  You were never short of hugs for him.  Thank you.  He actutally feels safe with you I could tell.  Also to Dr. Wical, Dr. Graupman and others who were patient with me as well trying to understand my little guy.  He is so confusing to me right now… When we get him back then hopefully I can show you just how bad he has been and what he had lost… I will bring him in for a visit to show you how he has improved.  This little boy has trust issues… after seeing what he went through in PICU I think you completely understand why.  He can’t communicate but he is very aware what is happening.We hate going to doctors, hospitals etc.  But you all made it seem not so awful by your kindness and compassion.  THANK YOU!!!
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Written Feb 24, 2010 2:07pm

Kodi is now admitted again for the 6th time since October 2nd 2009.  3rd time since Jan 21, 2010.  Bottom line Kodi is still jerking.  In August 2009 he was 39.8 pounds and doing very well.  Then got an eye infection in September and he got 3 immunizations that the school insisted he had to have.  I could swear in the spring of 2008 he got the MMR and chickenpox boosters because it was 9 months after his Aug 22, 2007 Heart surgery.  The boosters were not given in August because of the close date of that surgery.  No one has a record and so we had given them on 9/22/09 along with the regular influenza vaccine.  At the time he seemed like he might have had a sinus infection on 9/20/09 he fell while we were on a walk and scraped his knee and cried.  It was muggy and humid and he had tons of green drainage from his nose.  Exactly 10 days later from the shots was October 2nd.  That was the day the school called me and said to come and get him because he was not happy.  He was prescribed an antibiotic on the 22nd because of sinus stuff and on Friday after I picked him up I called doctor and he switched antibiotic thinking it was not working.  All weekend long he kept getting worse.  By Sunday night I called clinic again and the doc on call felt it was best to go to children’s ER.  Kodi was jerking and it was getting more and more violent.  ER admitted him and he was treated with IV antibiotic.  He improved somewhat.  We went home on Tuesday and slowly again he deteriorated.  Then the next week On the 14th of October he again needed to go to ER.  He would not stop jerking and hitting himself in his head.  He would not eat and would not stop crying.  He again was admitted.  At that time they thought he should then follow up and see neurology.  So we left again on Friday after seeing Dr. Schloff to rule out eye scratches.  She recommended a new guy Dr. Feyma.  She heard from other parents how nice he was.  So when I called neurology I did not even ask for him they made the apt.  That appt was Oct 21 or 22nd.  Dr. Feyma was very kind.  My mom and I were so happy to have someone really watch him and listen. I can say though there was one dr there that tickled Kodi and because he smiled the dr said “he’s fine” and then walked out of the room.  Then a few seconds later poked his head into the room and said “Smile ladies! It’s not the end of the world”. I don’t know how my mom stopped from getting up and chasing him down… I was fuming mad. He had never seen Kodi before and he had no idea how bad he was. He did not make my great doctors list. He made another list and knows exactly who he is an I refuse to mention his name. The next day Dr. Feyma called the house again and got him admitted to Gillette.  We were there 6 days. This was 6 days of a nightmare   I don’t remember everything they did but they did full body xrays, MRI, they put him in a tent bed that made him panic.  He had this weird shooting electricity like things shooting through him and he’d then jerk violently. He would fall asleep and they would wake him up. We tried everything.  Nurses would give me a brake and hold him for me to give me a break.  I just wanted to curl up and cry. Everyone would have sore ribs, collar bones, arms, jaws, etc after a few minutes of holding him.  They were trying to rule out anything as simple as a pinky fracture that Kodi would have been unable to tell us about.  Everything kept coming back as “normal” or within a normal range.  Kodi was put on Neurontin.  It kind of seemed to help for awhile then did not help at all in fact he got really bad.  Then we tried Acetazolamide that did seem to help until he got so dehydrated.  I could not keep fluids in the kid at all.  He drank tons and was always thirsty but still looked awfully dry.  Jan 18th in the evening he began to accelerate in his violent hitting/jerking.  I put his “no no’s” on and after some benedryl as doctors had me try to get him to sleep… He looked like he was sleeping.  I put him into bed.  Then I went to bed.  Awhile later his older brother Colt who sleeps on the top bunk hollered to me that Kodi was hitting.  I went in and only saw him kicking and his No No’s were still on and I watched him and then it looked again like he went to sleep.  So I went back to bed.  I had fallen asleep.  Colten hollered again at me and said he was really bad!  I was slow in getting in there only because I felt so tired and sleepy.  I also did not panic because I knew his no no’s were on.  I got a light on and after my eyes adjusted saw that Kodi’s no no’s were off and he was hitting himself in both eyes with his fists.  He was also crying really hard.  I ran to him picked him up and got the no’no’s back on and took him to my room to rock him.  He would not stop jerking.  The poor kid was so out of control.  I held him most of the night.  In the morning both eyes were black and blue and swollen.

We figured we better take him in...
We figured we better take him in… Dr Cress thought he would be ok…
This is 2 Days after he did this awful deed
This is 2 Days after he did this awful deed

We went to Dr. Cress.  He thought he’d be ok.

Other than looking horrible he kind of acted just ok… But then…

then…

Then Kodi began slamming his head on anything he could find including the wood floors. I wanted to scream but I knew I could not react… I could not show the shock etc. But I also could not stop him…. It made me cry…  He was also falling down etc.  I called Dr. Feyma’s office and Kim told me that Dr. Feyma wanted to get him in.  Maybe get him help.  So Thursday we were at ER.  I wanted to cry and at times I did.  His head was even spongy feeling. The ER doctor called Dr Feyma from the room. There were about 4 nurses in there with me.  The doctor was practically freaking out.  She kept saying it was the worst thing she ever saw.  His head was mushy… spongy…. and well LOOK at him!!! I started to feel panic because of the doctor saying it was the worst thing she had seen. Several nurses had tears in their eyes and they were trying to keep me talking.  I tried to stay in control… It was hard. He would slam his head against the bed rails. He would try anything to slam his head. So they knew I was not lying. They felt terrible. They decided to admit him to the hospital. That night late… we finally got up to a room and got him to sleep. I was still up reading a little to calm my nerves. It was close to midnight. And in walked a guy that looked like my brother. Tall dark hair and glasses.  I said “what are you doing here?” (he lives 4 hours away) But as he got closer I realized it was Kodi’s Dr.  He said he could not get that ER doctors words out of his head and he had to come see Kodi for himself.  I have to tell you he then asked if he could pick him up. He actually picked him up and held him. We talked about everything.  I explained how I couldn’t even stop him and we would try to even swaddle him to stop but he would find a way to throw his body on the floor.

We have been admitted... Looking worse...
We have been admitted… Looking worse…
The nurse helped Dr Feyma and I take photos.
The nurse helped Dr Feyma and I take photos.

He was at Children’s in  from the 21st of Jan to the 29th.  He had numerous tests. I want to thank the nurses on 3rd floor that took care of us on those days.  Then on the 25th Kodi had an ICP wire inserted.  He went to PICU (Peds Intensive Care Unit).  I need to thank Stephanie and Natalie for how hard they worked to get Kodi help and the kindness showed. Dr Haun was the best Dr in there in Childrens PICU.  I have to tell you we were there when they removed the ICP wire… I was scared but he sure knew what he was doing…

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from another post:

Crazy daze!

posted by Heather English on Wednesday, February 3, 2010

The doc’s have been playing around with Kodi’s meds. He is either too sleepy, stoned looking… or gets wild, happy and then full of these jerks. We like him wild and happy but not the jerking. Last night we put him into bed and he must have hit his head on the bed post again. My mom went in the dark and picked him up and was rocking him in the dark… I was talking to her and after about a half an hour she said “What is your problem Kodi. You are so sweaty!” Then she got a bloody nose so I took him. I just took him into the bathroom quickly with the light on to get her tissues and said “How bad is it?” Shocked! Kodi had blood all over his head, face, blanket etc. So he had to have hit his head. The blood was coming from him, not my mom. We saw where he left his mark in his bed, pillow etc. It was 4:30 am when we finally got him asleep. We tried to clean him up but it’s kind of difficult. So more playing with the meds… Hopefully he will sleep better…The steriod burst he has only 2 more doses so then we will see what results and how rapidly he deteriorates.

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After spinal tap... and on meds... is it pressure???
After spinal tap… and on meds… is it pressure???

From there Kodi went to another unit for extended video EEG. Yess more wires on his head…  I remember some of the nurses names Scott, Richard, Tom etc… I can’t remember anymore right now… Thank you as well.  Also the technicians who kept coming in to fix the wires… You all worked so hard and were so sweet.  Then Mike (A volunteer) who came in and watched Kodi so I could sleep at night. That was weird to try to sleep when someone is watching you… it was difficult the first night… but then I was so exhausted I just didn’t care. The last days Kodi was coming out of this obsession a little bit… He actually smiled and grabbed his favorite thing a balloon…

By this time Kodi was now on Klonopin and was being built up from Sunday to Friday when we left.  Children’s Pharmacy however filled his prescription with clonidine instead and told me twice it was the generic my mom was with and heard the same thing.  That is a blood pressure med.  Big difference.  Friday night he didn’t get his Klonopin dose instead a high dose of clonidine. That night we did not know this. My mom was with us and had her red silky pj’s and Kodi slammed his head where the wire had been and stitches in his head and it bled. But we did not realize he was bleeding. My mom decided to rock him. She thought he was sweaty or drooling… She herself got a bloody nose. I came to help and was going to just take over for Kodi when I saw all the blood. We got it stopped and her nose stopped and then everyone cleaned up… good grief…

Very stoned looking... limp and just stared wide eyed... very weird looking and acting
Very stoned looking… limp and just stared wide eyed… very weird looking and acting

He was acting snowed and weird all day Saturday.  Not moving and sleepy.  Same on Sunday.  Then as the week progressed he kept getting worse.  Dr. Feyma, His nurse Kim and I were trying to figure out what was up with him because it was working in the hospital and suddenly not.

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from another post

Just a little update!

posted by Heather English on Sunday, February 7, 2010

Kodi is not sleeping well at night. He’s going to sleep sooo late… 2 or 3 am… My goal is to flip him… Now that he’s off a steroid that makes him AWAKE! I could tell he was sooo tired, he kept yawning but then his eyes were wide open and refused to close. Yesterday he slept till 1 pm. But was up so many hours before that and was so tired I know he needed sleep… His iron is a little low so I’m trying to build that up and that means there is another need to sleep.
I have to check his temp… He is so sweaty when he is sleeping again. Today I decided to make him get up at noon. At 8:00 am I could not wake him up… I repositioned him, gave him his meds, took his blanket off and he would not even move. I could not move my heart to make him go to the meeting. Tomorrow if he is still sleeping late I’m making him wake up at 11:00 am… Trying to flip his sleeping pattern gradually here.If anyone has any other ideas how to build up Kodi’s blood… by foods… I’m trying to give him high iron foods with a high vit c juice…

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Feb 8th Kodi was really bad again.  Now though he kept spinning violently to the right.  We could not even hold on to him. My cousin has seizures where he spins in one direction.   This reminded me of this exactly! Kodi woke up on Monday morning and never got to sleep again until Thursday night.  Just short bursts of sleep at times.  Tuesday we were admitted to Gillette and Dr. Feyma even came and held Kodi. He did this because he could see I needed a break… then he took him out to the nurses so we could talk and work up a plan… I just wanted to curl up in Kodi’s bed and cry and sleep.  I think Dr. Feyma could see that.  I tired to laugh it off but I know by now he knew me enough that I was losing it… Thank you nurse Jessie his nurse. You and several others got beat up as well from holding him.

The next day Kodi got his second ICP wire to test the pressures.  Then he went to PICU.  He had Dr. Haun in Children’s PICU back in Jan.  Dr. Haun was now on at Gillette.  He and Dr. Norberg and Kodi’s nurse Barb caught the med mix up.  They came and asked me and I told him yes he’s on clonidine because it’s the generic of Klonapin.  They along with Barb the nurse said “no that’s not the generic.  It’s the wrong med”  Kodi was thrashing so bad and spinning in circles with all his wires, IV and monitors on him… we had to hold him down because he could not settle down.  He was given so many things after that to “calm” him.  Nothing worked.  Nothing really worked until Thursday night. After several friends all took turns giving me a break and helping… Heather and Joe came.  Wow. Joe wrestled with Kodi. Heather helped fix an IV that stopped working… 🙂 I was able to get a shower and cry my tears…

Friday he got the ICP wire out and another spinal tap… Then we stayed until Tuesday. But on Friday Dr. Feyma, Dr. Wical both told me that Kodi went through a significant amount of trauma… (not something new for me) and they felt that Kodi needed a very, very low key weekend. They wanted to stop all the visitors and only allow family to hold him. He was still having horrible shakes and was very traumatized and after being disconnected from everything only wanted to be held by me. Poor little boy wanted me touching him. He also wanted me to hold him. He wrapped his little arms around me and kept his head on me. During that stay there was a little baby girl that died. I remember seeing that mom and dad and feeling so awful that Kodi was having such a difficult time.  I remember wanting to reach out to the family.  I did later talk to some family in the hallway. They told me what happened to the little girl. But later I found out it was a teacher’s little girl at my daughters school.  I was compelled to reach out to them.  I had to. I felt somewhat of a strange connection like we shared a horrific day. Their little girl dying and normal just very sick.  My little boy suffering and me praying he would just go to sleep and not wake up anymore… because we didn’t know how to fix him.  I remember feeling such a horrid mixture of emotions and guilt… But it helped meeting her and talking to that mom/teacher later.

Kodi never really picked up eating or drinking.  He lost a ton of weight from movements.  Poor little guy.  But all last week he would not eat/drink hardly anything.  So he ended up getting really sick.  He came in for his scheduled removal of ear tube by Dr. Malone and got tummy scoped by Dr. Stafford.  Last night everything I got in him all day all came up so we came to Children’s ER.  He was dehydrated, among other things.  He now weighs 33.3 pounds and now we are fighting to get his little system going again.

We were told last week that Kodi was losing his vision in his right eye… It was legally blind anyway but now its worse.  It’s from hitting it.  The left eye is a worry still as well.

We have family all over the states who care dearly for Kodi.  We take their calls as well as close friends that call we can take most of them at times.  We have to talk to the doctors but aside from that anything outside right now only causes stress, and takes away from the care we are giving to Kodi.  He was traumatized with some of these events.  However, he is calm now yet still very clingy to me… His brother and sister have been shuffled around quite a bit with some dear friends when my parents could not be here.

I want to thank the teachers that both Symone and Colten have for understanding if there are mix ups with homework, meltdowns if the kids had any and lack of communication/notes with kids.  Both kids care so much for their little brother and are affected tremendously by all that’s happened.  Symone is like Kodi’s second mom she is a good caregiver and back up.  Colten misses goofing off with Kodi.  Symone is my worrier but Colten this time got homesick and would crawl in bed with Kodi and cry while hugging him.  Every time they got to visit Kodi would perk up and act so happy to see them.  There were some days missed because of these upsetting events.  The kids were exhausted emotionally, physically and needing to be with family at times.  Kodi’s was put out 5 times the past 4 weeks, hospitalized 3 times the past 4 weeks for a long time each.  Numerous IV sites, meds and having to be held down several times.  So we hope this will be it for awhile.  We would like to get Kodi home, Readjusted and eating good again.

In all of this I want to thank the Doctors that are listed.  If I put their names here they deserve recognition.  They have all done a wonderful job in trying to get us answers.  Dr. Zimny and Dr. Pettie as well as Dr. Wical and Dr. Graupman are also some wonderful doctors.  If I did not mention your name however it’s not that you did any “bad” job.  It’s just that I only remember your face and not your name.  Sorry!  Otherwise If I know and list your name you are amazing and we all appreciate how much you have helped us and the kindness you have showed.  It’s hard having a special needs kid.  Then to get comments like “Well he has CHARGE syndrome what do you expect” or “Why are you so sad he’s going completely blind in his right eye… he’s legally DeafBlind   My answer is “He was doing so much.  Look at some of his photos.  He was not “normal” but fun, happy and mischievous.  Even though he is DeafBlind he also had some vision that was helpful.  This is a huge loss to him.  Also traumatic!”  I know many well meaning people want to help, want to talk to me or have their own ideas about things and what it best for Kodi and I, I appreciate your concern but we are doing the best we can and have great doctors, nurses, friends and family that have taken very good care of us.  We also have a site www.livestrong.lotsahelpinghands.com for Kodi that we keep better updates on for family and close friends all who have offered to help.  They have taken great care of all of us.  We were able to post updates and also request different things for help.  It was so nice to not worry about other two kids and know they were in good hands and despite everything being loved.

All for now.

Still Sleepy!

posted by Heather English on Thursday, February 18, 2010

We weighed Kodi here at home when he got home… Just a diaper… 34 pounds… Was 40 in September. He looks scary thin.
He also was sleepy all day again. Dr. Feyma wants us to wait it out… He feels we need to keep trying “Heather his little body was really stressed! It’s going to take time!” It’s true he had a very high almost 200 heart rate and high blood pressure… He was burning tons of calories… So I’m worried but he also will drink chocolate Milk… Hmmmm! My Uncle Blaine said to add half and half to it… that is what they did with his oldest… I just might. As well as Carnation so that he gets more nutrition…We head to Peditrition tomorrow to get the pre-op for Monday and I will aske him what to do next..Also we visit the eye doctor again… Hopefully that damage a couple of weeks ago will be healed.He doesn’t want to go to bed alone… He wants me to hold him so he can go to sleep… Poor little baby. He really needs a lot of TLC right now. Love can do a lot we all know that… Make happy little hearts!

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Difficult Day

posted by Heather English on Thursday, February 18, 2010

Today we went to pre-op appt. Kodi needs to get food and fluid in ASAP. Still on for Monday though.Bad news at the eye doc. The medication Diomox that Kodi was on might have been the reason his eye started to dry up. Then he started hitting his eyes because it’s painful. That inturn caused damage to his eyes. His right eye now is very soft for 2 weeks straight and eye doctor infomed me that he is now going blind in his best eye. Right eye!I looked up symptom below… This is not what eye doc called it but he did say it was painful… In which case can cause problems. I am also wanting to take Kodi off all the meds right now because in doing research they all work the same… This means he might not have pain but lose his vision… I’m confused and need to do research with doctors again….

Ocular Hypotony
Ocular hypotony, or intraocular pressure that is too low, can sometimes occur in response to eye trauma or surgery, or poor blood flow to the eye. Generally, IOP below 6 millimeters of mercury is considered hypotonic (normal IOP typically falls between 12 and 22 millimeters of mercury). Hypotony distorts the retina and cornea, causing cataracts and edema (swelling). Symptoms may include decreased, blurred or distorted vision, or fluctuating clarity of vision. Vision changes can be slight, acute or severe depending upon how severely the retina and cornea are affected. Eyes with low IOP may also often be inflamed and painful.

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More Eye Info

posted by Heather English on Friday, February 19, 2010

This situation with Kodi’s right eye is his pressure was 6 (normal is 10-20) It was at 6 when he went to Childrens Hospital Feb 22nd. The low pressure could have been a result of Diamox but once off that would regain because he was not on it that long. He was off it before going to hospital. However, Kodi’s did more damage to his eyes by pounding them so hard… That caused the blood vessels to hemorrhage and inflammation in his right eye got high behind the implant lens from his cataract surgery. The trauma caused his pressure to climb in his left eye (pressure at 22) and go low in right eye 6. These pressures are both of a concern. They can’t get any pressure in his right eye now at all. His left eye is now at 15. So far holding it’s own but that is also his eye that we don’t know if he can even see out of anyway because it was so much smaller than his other one was. Now his right eye looks some what smaller than the left one.
In right eye its’ called pre Phthesis. That means the eye shrinks and degrees vary from still looking kind of like an eye only very small to having to be removed. According to several nurses at eye clinic.
I was just informed that there is a positive… Kodi’s retina is in tact, and the inflammation is improving. So even though he is losing his vision maybe they can slow the progression. They have us putting in two drops. One to keep eye dilated and the other is a steroid to help inflammation diminish. I tried to look up info and did not find much at all… The only think I could find was Ocular Hypotony which only tells about having low pressure below 6. But this positive area does not have anything to do with his vision… His vision if not already gone in right eye is significantly deteriorating and rather rapidly.The Clonidine that he was put on as an error… did not help. But also did not cause it… Just accelerated it maybe.I hope this answers any questions. I am a wimp and feel nauseated with this news. I’ve lost it several times. I can’t seem to shake it right now either. It really freaks me out. I am so sad for my beautiful little guy. I can’t really accept this right now….. It makes me physically sick thinking about it right now. I will take a ton of photos of him now… I hope for the best and yet am trying to prepare myself for the worst…So for the benefit of anyone that thinks I’m strong I’m revealing this only so you can realize I’m actually very weak. I’m a huge WIMP. I have a very soft heart… I have to face the worst with my emotions so that I can deal with it as it comes. Then when reality is there I’m not so bad. If reality is better then I’m relieved. I know God will help me be ok with this in time…He has in everything in the past…But Right now I’m not ok!
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No real cure right now!

posted by Heather English on Sunday, February 21, 2010

We took Kodi of the Tegritol on Thursday night… He was hardly eating or drinking… I was using medication syringe to get fluids in him… teaspoons at a time. We need him pumped up for Tomorrow. Besides all that he was rubbing his head and crying this high pitched cry/whining. The Klonopin was working before… But last night it was not getting him to sleep…
This morning at 3:00 am I called the neurologist… Kodi was eating better as the day went along and last night he was even giggling and smiling at me… However, at 11:00 pm he started “hissing” and then hitting really bad again… It just kept progressing. I tried to get him to sleep and gave in and called emergency neurologist line. Dr. Feyma called back and said to give him Tegritol again to get him to sleep. Continue twice a day if when he wakes up he still eats. We are trying to get through to tomorrow so that we can tell if getting the ear tube out made a difference… I think both Dr. Feyma and I are banking on the fact that the ear tube is a huge factor… It would simplify so much for Kodi.Kodi’s scheduled at 8:30 am for the ear tube removal and scoping of tummy tomorrow. We hope for the best.

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Finally the ear tubes out!

posted by Heather English on Monday, February 22, 2010

First I want to thank the volunteers that came forward and offered to help! Even the back up ones… Getting my kids to school, those that came with me and the lovely meal for my family. I find it very difficult to ask for help unless it is absolutely necessary. I know everyone else has things to do and places to be and then as I told the two friends that came with me “I don’t like to ask for help because of that and in my mind others have more pressing or difficult things to deal with.”We made it on time. Kodi fought to be put out like usual and they took the stitches out of his head from the ICP wire. YEAH! Then the ear tube that was still in his ear was taken out. Next I have wonderful but gross photos of his esophagus, stomach and beginning of his intestine… He still had food in his stomach from yesterday. His tummy did not empty. I guess they took some out (probably to test I’m sure) and he also vomited I guess… They took biopseys of his stomach. We will not get those results for a week or two. In the meantime they put him on antibiotic that helps tummy empty… Also “HURTS” his tummy I might add… already crying about it. I hate that stuff…I was getting frustrated that they were pushing us out kind of when the kid had not eaten or drank much. This is because I wanted him to be going home eating/drinking… He will also be getting an upper GI test here soon. My “helpers” were worried I think too that they did not pump him up with IV fluids since he was sitting there for so long… I was trying to be a good advocate. Oh! Well!

He has had several teaspoons of Milk with carnation, water, and 10 cheerios. Big wow! I’m hoping to see an improvement tomorrow in this kid. He is so very scary skinny.

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Admitted again!!!!!

posted by Heather English on Wednesday, February 24, 2010

I’m trying to see the humor in this… I’m beginning to feel as though I live in a hospital…
Kodi was very dehydrated on Monday when we left. But they practically kicked us out… “Keep trying to suringe more fluids into him along with pedisure.” OOOOOKKKKK! You can sense my frustration along with both Charity and Ronnie who were there trying to get their attention for Kodi as well.
Anyway, I tried… he vomited in his sleep. Then yesterday I held him all day doing the same… Giving him teaspoons of pedi sure, juice and small bits of food like cheerios… But then he started his high pitched whining again. At about 8:20 pm everything I fed him all day came up all over me. We got him and me and things cleaned up and I got a shower and called pediatrician again… He was on call as well and as we talked he finally said to bring him to Children’s at ER. They got IV in him first time… Thank you to Issiac. Then they did an xray of tummy. It was solid. So mirlax and fluids the next few days. I know this is from the PICU at Gillette and all the narcotics that he was given. They didn’t agree with me even when I said his stomach was not emptying… They said that was a different issue. But if it can’t empty because it has no place to go??? Then they said “He’s be in so much pain!!!” Ronnie and I both can testify that these kids feel everything so different. I said “That is why the whinning and refusing to eat!” But finally agreed to do xray. I don’t want to say “I was right” But I was. Then GI doctor’s nurse called me and she agreed. Then why didn’t that GI doctor do something more that day on Monday… Not sure I like Dr. S… Jury is still out on him. Office personnel is nice however.
Monday at check in of procedure he was 34 pounds the same as the scale at home. Yesterday morning he was 33.5. When we checked in last night he was 33.3. Kodi was at 39.8 Back in December. I’m very frustrated that he still is not eating… I’m going to start pushing they give us high calorie drinks here again to get some nutrition…

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Home Sweet Home AGAIN!

posted by Heather English on Thursday, February 25, 2010

OK! We are home! Kodi is acting so much better. He got a bath and he’s looking at his collection of balloons. It’s actually making him smile. He is still jerking and squwacking but he is smiling. He is 34 pounds and so now I need to get the food in him.My mom is on her way up. I know her and dad really appreciate how much you all have helped. It has been encouraging to read everyones comments. I want you to know you all are loved by all.I was told by two different people today Dr. Zimny and a nurse that Kodi has a really nice family. His brother and sister are awesome with him as well. They also said they all can tell we really love him. Kodi has become quite the talk between many doctors, nurses and at both hospitals. Today the manager of Childrens Pharmacy came up to meet Kodi and he had tears in his eyes. He was acknowledging the fact that they messed up the prescription. I’m not really sure of his motive except that they did make come changes and put a listing on all drugs what exactly the meds are and what they are to be used for and what the generic form is. He said he had a couple of staff meetings and tried hard to drill it in. Clonodine is the drug most prescribed but Klonopin and clonazapam is less likely prescribed. So we will see. I told him I check, double check and now when it give a description of the pill form I check and see if it’s right. Then call another pharmacy or doctor to double check. So hopefully I’ll be smarter about it in the future as well.
A lesson learned by all….
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Written Mar 4, 2010 3:18pm

We went a week now with no hospitalizations!  YEAH!  However, Kodi still jerks plenty and does what I am now calling “reverse screaming”.  You don’t understand until you inhale really fast and make a sound with it… These coincide with each jerk.
He’s back on the meds he was on when he left Gillette and He’s kind of sleeping at night.  Otherwise he still does nothing other than jerking.  Gaining weight is slow but he is eating and liking finger foods.  It’s just still really slow.
He has not cried if a couple of days either.  Smiles a lot.  The kids made these cute beaded lizards that is proving to be both entertaining to Kodi and therapeutic I think.  He holds one in each hand.  The kids want to make them and sell them…
He wants to be held a lot.  I fear it has to do more with his vision loss…

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The same!

posted by Heather English on Thursday, March 18, 2010

Just wanted to update everyone. Kodi is not much better. Still making the madd Zebra noise along with jerking. I went to parents on Friday and came home Wednesday but on Sunday Kodi jerked his head really hard and broke my nose. I got xrays on it yesterday. There is not bruising just swelling behind the nose… stuffy feeling along with pain and pressure feeling. Strict orders to keep nose from getting bumped or it will be displaced… It’s a clean break and a complete one but nose is straight and so the will do nothing unless I get hit again. I have to ice it.The worse part is my little boy has a spongy head again. He’s not sleeping. My mom and dad tried to help me get sleep while down there by putting him in bed with them etc… Dad ended up on the couch and Kodi was really wild. Poor mom and dad… Made me feel bad and was really hard to sleep with nose… Fear of bumping in my sleep. He is back to not sleeping but on a positive note he is up to 36.5 pounds now… :-)Saw two of Kodi’s doctors today and they increased his Klonopin and are adding another. We will see.

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Difficult times!

posted by Heather English on Tuesday, March 23, 2010

This comes at a time when I know everyone has so many problems and I want to thank you all for your support in so many ways.  I did not update this right a way as I needed to come to terms with this myself.Yesterday it was confirmed that the best eye of Kodi’s is now completely blind. Phthesis is when the pressure becomes so low in the eye that the retina  vessels etc all become smaller and smaller until they deteriorate and become detached from the eye and then the eye begins to shrink itself. The description I was told is progressing more rapidly than I had hoped. His eye is beginning to shrink and the doctor said the fibrous (not quite sure what that means yet… could not handle asking that question) is appearing . His eye is shrinking and I don’t know if that’s what he means the inside first???
I don’t really care at this point. I mustered up all I had to ask if there was a surgery to help reattach this stuff and he said no in this case it only makes everything so much worse.I can not describe any of my feelings right now only that each new event my precious little guy goes through is only making me so much closer to God. I puts me in touch with my deepest feelings and I know if I feel it then God feels it on a much grandeur scale… He sees also what Kodi is feeling, and what he’s going through inside and his feelings. Also He sees what everyone is suffering with all around the world and there are so many worse things out there. Instead of hating “God” as some do for all the troubles… I love the True One so much more because I know He cares in such a way that it makes me trust Him in a way I didn’t know was possible… I trust Him with my tender heart and I feel so ripped inside watching this innocent victim suffer so much… I trust that He will make it ok. As bad as this hurts it really will be ok. I trust that we will yet deal with more devastating news and not give up. I trust that He knows how we all hurt for those suffering as He hurts and knows He can fix it… Our hurt will not be forever.I was reaching really bad for good news when I told my mom I won’t have to buy Kodi bifocals anymore. They made his glasses so expensive. Today the ENT said he no longer needs to wear ear plugs as the removal of ear tubes is all healed and no fluid in there and he can now enjoy swimming without the earplugs…
I’m seeing some slight signs that maybe just maybe his meds are starting to work… He also doesn’t want his “NO NO’s” on… He wants to move freely but then goes back to hitting. Less fists and more open slapping… Oh! That would be wonderful.
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Baby steps

posted by Heather English on Thursday, April 1, 2010

 Kodi woke up with his iris (normally brown) very red looking. So we went back to eye doc today. He informed me that this is a normal part of the process that the blood vessels grow into the iris and become weak and tender. So you can see the red/blood in his eye now. It may go away with time. I just want to inform you because if you see his right eye please don’t freak out. Looks like the red eye in photos… Only not a photo problem it really is red.Also I want to thank everyone that has been so helpful and volunteering to help. I am hoping that we can get a sense of normal back. Right now this kid is kind of stable… Still not in school.
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Small Problem

posted by Heather English on Saturday, April 10, 2010

This hopefully does not offend anyone… Kodi has a new thing he is doing… I need some advice… He is taking his pj’s and diaper off during the night and urinating on his bedding… This has been going on now for 5 days. I’m tired of changing bedding all night long. And well Colten is sick of it too… Imagine why. If you watched about the DeafBlind triplets they had 3 girls that all were smearing stuff in the carpet etc…
It’s not that bad ok? But he thinks this is so funny!!! His peditrition said to duct tape the diaper tabs and wrap around his waist but not on the skin… just the diaper waist… Well he just pulls them down not by the tabs…Any Ideas? We were desperate to find some humor ok? So we decided Colt must be right in saying “He’s marking his terrority! That’s what the animals do!” We had no sleep last night… So service was impossible! Now we are cleaning and washing the mess again…HELP? I need some ideas!I’m thinking the meds they put him on a couple of weeks ago made him aggressive .. He’s doing very naughty things… However, he has tons of energy and that is back… Ho HUM!

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Few steps backwards!

posted by Heather English on Sunday, May 16, 2010

Kodi went downhill for a couple of weeks here… slowly regressing again. Took him in Thursday to see Dr. Feyma neurologist… What started out as a 9:30 am appt ended up being an overnight visit… Kodi has very strange brain activity… Hopefully just Kodi but so far nothing showing seizures…
We did not catch the suspisious things he does that prompted this visit…I’m glad my mom was here… However, the sleeping thing is getting nutso…
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One Long Summer!

posted by Heather English on Monday, August 23, 2010

I will tell you this:
nothing ever works out like you think!
All the meds Kodi was on he’s off of now. We are trying Depicote. However so far no change. Kodi is not well. He just slams his sweet little head as hard as he can… I googled head banging and what comes up is very nerve racking. Basically causing himself brain damage among other things. But why is the question.
I have a theory that is so weird no one believes me… But he was ok one day aside from a sinus infection but got those often and the next day he was really bad. October 2, just 10 days after immunizations.  He has not been right since. But that is not the only factor. There are things that help sort of. Massage on head. His brain could be crushed by his scull not growing and shaped differently. This caused pain. As well as he has temperature and balance issues. He is DeafBlind and autistic like kid and so can’t communicate. This is all a “perfect storm”.
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What is up tomorrow!

posted by Heather English on Monday, August 23, 2010

Tomorrow Kodi has another sedated MRI. I’m hoping and praying that now they will see a change in something that they have a better idea what is going on. He is not happy. In fact he’s quite misserable.
I am now starting a full time job on Monday next week to support kids and myself.
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Still nothing showing up!

posted by Heather English on Wednesday, August 25, 2010

So here we go again. MRI is the same! Kodi is eating however is shutting down! In the morning we probably headed to hospital. Try new med under observation! So another hospital stay. Just have to figure out details now again!
Glad I don’t have to relive the last 8 years. Hope this ride ends soon. It’s sure whippn us a good one!

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Back In The Hospital

posted by Heather English on Thursday, August 26, 2010

I just wanted to give an update to everyone. Kodi’s trial from Dr. Feyma, of a dose of med to see if it worked, failed Wed night. He called first thing this am and said “Would you be willing to come to the hospital? I can do trials under observation and get results faster and if these trials fail work up another plan.”
The last thing I want to do is spend time in the hospital on a beautiful day however I consented. Kodi slams his head so hard against everything.
For starters he broke my nose. He has hurt all of us Symme, Colt, Mom, Dad, Darrin, Kim and so many others including hospital staff and Doctors.
The latest was my mom’s dislocated/broken rib. This is added to the fact last Sunday Ronnie R. and her kids came with us to an indoor park. Kodi kept slamming his head against everything in the truck. Just ask her to describe it.
Kodi’s MRI looks the same. Today we did the trial the Dr. Feyma wanted to try. It works with headbanning kids who are blind…. However it failed! He came back in and I showed him video of Kodi running around playing with balloons… after looking up at a balloon he suddenly stops looks up rolls his eyes and starts hititng his head. He watched that and said “I want to order x rays.!” Then he had another neurologist come in a little later who works at U of M. He had me show him that video as well. Kodi was back from x rays. He said he was going to go look at them.
Then he called nurse later and said to give kodi this drug that in PICU last winter knocked him out. He also said neuro surgons would be coming by. He has something really loose in his neck. His scull pulls away from his spine way too much when Kodi looks up. (this he described when he came by at 9:30pm. )
I was scared but Dr. Feyma also said he wants something done before he damages his spinal chord if he has not already… They may do an MRI on that location. He said he was “alarmed” by seeing that video… so the same thing I’ve described many times took one video look and flags went up everywhere. Kodi does not want to look up, Kodi does not want to lay down, Kodi loves to have his head rubbed. Dr. Feyma is awesome. He told the nurses who are in the hallway that this kid has him so stumped and “That mom is a saint and needs a break! Kodi has the best mom there is! So don’t  cry. Just help me gather data to get him on the path to recovery.” The nurse that Kodi has tonight is awesome. She told me all of this.
Lud, Ilene and Kim were here when Dr. Feyma came in. tonight. He had tears in his eyes. He explained what he sees and said “I hope this is the answer but don’t get your hopes up because it will probably get shot down.” So now Kodi is out! So in the am neuro surgery team will come down and talk to me. This may tell us something is going on and what that it. Dr. Feyma said he is causing damage… they need to see how much and figure out how to stop further damage. So him being sedated right now is a good thing.So now I’m resting my eyes and praying for what Friday will bring. I have to have this sorted out because I start work on Monday. Kodi might also qualify for a full time nurse. Dr. Feyma is trying to help get us help in any way he can. He asked if anyone can organize a benefit for Kodi… Well???? that would be a no…
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Still waiting!!!

posted by Heather English on Friday, August 27, 2010

Today we never got the visit from Dr. Groupman. The neuro surgeon. There was a trauma patient right after the nurse told me he was coming to talk to us. So he was in surgery with that patient over 24 hours. Kept having problems. So he will come by first thing in the morning I’m told. I was so worried all day because Kodi doesn’t wake up. He has slept all day long. He doesn’t seem to even care about anything. They took him off all meds. Still occasionally jerks but also he just doesn’t do or respond. Dr. Feyma decided to order and IV because he was not eating or drinking. I think he’s also worried about brain damage. Doesn’t even want him to move much because of what he sees. So I guess we wait. I keep praying this is the answer and that they can do something for him. If not let him just go to sleep because he really is not living anymore. I’m really worried about him! His liver numbers are also a little high!
Symone and Colt are staying here with us. There isn’t school to worry about yet! My job starts on Monday! Hope Kodi’s home for that!
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Another Day of no answers!

posted by Heather English on Saturday, August 28, 2010

Today the doctors came in but all at different times. Kodi was still very sedated and mellow. The order to order CT scan right away…another dr said  Tim and I also have been talking with Patrick (Dr. Groupman the neuro sergeon) and we want the CT scan done now. Kodi could have a bleed that is keeping him from waking up. He must have a concussion symptoms ” I agreed. Kodi is eating things but does not want to sit up. He actually cries when we sit him up tonight.
Then Amy, Tim and Ethan came and Ethan was telling us a story about and Kodi “Once a pons a time…A boy named Ethan asked Kodi if he wanted to go for a walk. Kodi said “Yes!” So we put him in a wagon and he was not to heavy to pull. The End” Thank you Ethan!!!Maybe this was when we put him in the wagon last winter here and Ethan is remembering it? Kodi is the only patient here tonight… Kind of strange. The nurses are thinking its weird and are bored… At this point I don’t know too much more but we sure thank everyone for the support. Oh and I know Kodi loves the hugs and kisses.
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Written Aug 28, 2010 10:39am

The staff has been so helpful and sweet. My other kids have been here to since they are not in school.

Kodi has been slamming his head so hard against things. It’s horrifying to watch. Some of the nurses have tears in their eyes. We hope to get some answers after this long year.
I still have nightmares of what happened last winter… I told Dr Feyma this… He said he did too but less often…

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Finally some answers.

posted by Heather English on Monday, August 30, 2010

However, with the answers there isn’t an easy fix… In fact it would be rather risky. Dr. Graupman is the Neuro surgeon and he’s on board however, he is not convinced it’s worth the risk.Kodi’s top two vertibre in his spine are unstable. Probably like the cranial facial palsy, the arachnoid cysts, charge syndrome etc… He was born with the instability.

They are trying this collar. However, Dr. Graupman said that won’t help. There is something that is some kind of jacket that is like a hood and goes down to the hips that is stable and he’d be unable to move that might help. If we did trials of these and it seemed to help then Dr. Graupman might be more inclined to look at a surgery that would fuse his scull to the top vertibres however then he would never be able to move his neck back and forth, sided to side or turn his head. The problem with this is that the surgery is tedious, then he would be in some kind of cast that goes around his face down to his hips/jacket deal. Like a mummy for the top half of his body. He would be like this at a minimum of 3 month and more like 6 months. Also if he were ever to jerk at all in the future then he would become paralyzed.

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Going Home! Staying! Going Home!!! Nope! He’s staying!!!

posted by Heather English on Tuesday, August 31, 2010

My dear friends and family.
Dr. Wical the chief neurologist was in here when Cindy C and Ilene B. were fighting with Kodi this afternoon. They gave him a small dose of the knock out drug… the one to calm him and knock him out again. Now at 7:00 pm here he is finally asleep after crying and Dr. Wical was back in and she took the collar off so that he could have a break… He tipped his head to the side and forward again and now went out. We all agree this little guy is suffering in some kind of pain. They are going to try to stabalize him with meds but use collar and to also keep him from letting his head drop back or throwing it back as much as possible… If this collar seems to help some they will try this funny jacket… If that works maybe some day Dr. Graupman will do surgery and fuse skull to neck however, the unstable part of his neck is just above the part of the nerves in the spinal chord that control breathing and its just below his brain stem. If he jerked he would die.  She said “Kodi is in the top 3 of their dept of kids that are really bad and troubling and we’d like to get him to the top 10.” She also stated that Kodi makes them all feel dumb as they can’t figure him out but Dr. Feyma is not going to stop digging. She said he’s that young and new that he’s determined to figure him out. I told her that we all appreciate how much they have all been so kind and not willing to give up on Kodi. But the fact that they found this answer doesn’t mean there is a fix… That is the next tricky point. She said “You keep doing what you need to do accepting help, and give him lots of love! You put up with so much more that a lot of people do.” I informed her I feel like a baby every time I call about him and she said “no he’s that bad”. That is strange because it gives me some peace of mind knowing I’m not that crazy…Anyway, I also want to thank you everyone for all your help… The meals, the helping move things, helping with Kodi and everything. I am so overwhelmed by my life at times. Another thing that just struck me was when Dr. Wical said “enjoy this sweet boy every day you have him!” OH! I DO! That is the toughest part.Thank you all so much. But Kodi is resting and that is grand!!!
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Home for now!

posted by Heather English on Wednesday, September 1, 2010

Hello! It’s true there is no place like home. Dr. Wical the chief neurologist came in and those doctors feel Kodi can’t go to school. They also are trying to get a letter uo to recommend to the court to allow Kodi to live here as long as he is alive. It will bring undue stress and cause high anxiety for him to have to leave his only happy place. The only home he has known.
So Kodi is back on the meds that made him stable but they are now more time release ones to prevent tummy aches. So hopefully will make him eat. Also the big drug here for the emergency put of control times. We hope he will perk up here and eat!!!Also as he wears his soft collar we are seeing a pattern in the collar where he wants his neck… ATD then can make a collar to give more support in the back… It might help???? They are just trying to come up with what is going on… He still has the mioclamatic jerks…. So he’s on klonopin, also the trgritol again for nerve pain that will help calm the nerve pain in neck as well as facial nerve pain, then the cyproheptid to regulate his body temp again. Then as those start working see how he does. Then the risprodal for emergency med. Poor kid!
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End of week!

posted by Heather English on Friday, September 3, 2010

We thought we would update this fact that Kodi has been home Two days. There really is no improvement since we left. He just stays in bed or on the couch. I came home tonight and gave him a lot of attention. I did get a smile out of him. But otherwise all the lovely skills he had you’d never know. He will not feed himself or drink. He’s becoming very dependant and is learning helplessness… So I’m trying to make him work some without irritating him…. I’m exhausted… Past 10 nights only 2 to 5 hours a sleep. I feel really shaky!Thank you everyone so much for the meals and all the help. Its amazing

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The long weekend!

posted by Heather English on Monday, September 6, 2010

Saturday was different. Kodi was very sleepy. Not much head banging or hitting. However, there was a loud pop sound in his neck Wed evening. We noticed that Kodi since he has been home will not use his arms much at all. Saturday not at all. So when I woke up to Kodi on the floor during he night I realized he must also be dizzy. So at 8:00 am Sunday I called the trauma nurses to page his neurologist Dr. Feyma.  I talked to my dad and wrote a list to ask Dr. Feyma.
When he did call he was concerned about the pop sound. And said if happens again get in there right away. Call on the way. Call Tuesday if still not using his hands. He said “We are going to be working together for a long time! So don’t get discouraged!” I think he said that more for himself. He sounded worried yet without answers.
We keep getting lots of food in the kid. But he’s a couch potato still. Today I got my medication list done for anyone taking care of him along with emergency numbers.Thank you all for the food, encouragement and help!!! We love you all!!!
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Back to drawing board.

posted by Heather English on Wednesday, September 15, 2010

Kodi signed more today to intervener. However after that they heard a pop sound in his neck. So dr. Feyma wants to talk to Patrick Graupman the neuro surgeon again. Going crazy!  Kodi was calm and sleeping on couch. Tim didn’t want us to have to go to ER so said to keep him on meds sedated like till they have a better plan. Calling me in am… Will know more.
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More worries!

posted by Heather English on Thursday, September 16, 2010

Kodi has on occasion now had a blue/grey tinge to his face and fingers… His oxygen is lower. Also, he basicly just wants to be lying on the couch. Tomorrow I find out when he sees the neuro surgeon. Dr. Feyma nurse is getting that set up. They are double booking him. They feel it’s getting urgent. I’m at the point either way they need to try something. He is either going to fade away like this or they at least try something. Maybe it will work. I just don’t know. If it doesn’t? How is it worse…I want to thank everyone for the meals, help, encouragement, and everything.

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Neuro surgeon apt

posted by Heather English on Friday, September 17, 2010

So the 28th kodi is scheduled to visit the neuro surgeon. This is pushed in as quickly as possible since he is off next week… Sad!!! But that is ok I hope… We will see what will result from all of that. I am heartbroken about this little guy. They increased some meds to keep him calmer… Only because he is really unhappy and they need to keep him calmer. Last night I held him in my arms for 2 hours straight. He had a firm grip on my shirt. He was also crying like he was really sad. Not like he was in pain more just extreme sadness…. I could not sleep at all… So asking me about Kodi right now will cause my eyes to leak… Just the way it is…
I will update another time if there is more. Symone and Colt are struggling with emotions a little too. They snuggle with him and cry. It’s hard on my parents and Kim and Darrin as well. I know everyone cares.. Somehow you still feel alone in it.
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Written Sep 17, 2010 10:52pm

We love Gillette. Kodi is cared about and it shows. He is not well these days and is having neck issues. I’m so sorry I’m not updating much. It’s so hard to think about what he is going through. He can’t tell us if he is in pain, feeling numbness, twinges of stabbing pain, weakness, and now I feel sometimes like he is giving up. Last night I held him for 2 hours and he was sobbing, not the kind when you feel pain, the kind when you are really sad. Huge tears and just sobbing. He would not let go of my shirt. I could not sleep all night. My eyes were leaking and my heart bleeding! It is so hard to watch this as a parent. But more than that it’s hard he can’t tell me. He’s just lying around all day. He doesn’t want to get up at all. I feel so bad for my precious little guy. Kodi momma loves you!!!!!
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End Result of this weeks Dr visits

posted by Heather English on Friday, October 1, 2010

Dear Family & Friends,
The visit on Tuesday with Dr. Patrick Graupman resulted in Kodi getting fitted for a brace to keep him from further damaging his neck. Patrick said he was dragging his feet on doing surgery since there are not really big red flags waving at him and Kodi is in a “grey” area… Kind of how Kodi is I guess… Just puts him at risk for greater things. Anyway, surgery for him would be a huge risk and a huge deal. However, we need to prevent fractures… So our 11:30 apt turned out to be a huge ordeal. We went over to ATD to have him fitted for his contraption.
I felt better just knowing docs all on same page. Then today we went to Dr. Timothy Feyma. He seemed very cheerful to see us. He held Kodi in his lap then asked me to take his brace off. He took him for a walk and it was so cute seeing Kodi walking through the nurses all lined up to see him. He knelt down and faced Kodi at one point and was talking to him. It was so cute to see Kodi smile back at him. Then he brought him back in room and we put his brace back on… he watched him walk over to my mom. We went over the same deal with meds… Keep him on the same meds for now… We discussed the botox to his neck to help tortacolis to help his neck straighten out and stretch those muscles. Then we discussed surgeries and Dr. Feyma also said how he understands how traumatic it was for Kodi, me and all including him last winter when Kodi had to be held down in PICU. “hopefully those memories will fade with time” he said.
Then we went downstairs to Dr. Gormley to do the botox. Natlie, Dr. Graupmans nurse was involved as well. She assisted with the botox while I held Kodi in my lap. Kodi was ok until the last one…he whimpered  They only did the minimum because it could effect his swallowing and aspirating about 50 percent of the time it does. However it’s only temporary for 2 to 3 months. If it does effect it then they will put in a tube into his nose for the next few weeks. However, this will relax the muscles so we can stretch those tight things and then put him in his brace…
Then we headed back upstairs to ATC. Sun met up with us and we worked on the brace and she also got another kind so we can alternate depending on type of activity for Kodi. But she said to come back. So we went to eat lunch. We got back and again needed adjustments. So we left and went to Kodi’s eye doc in Woodbury. Dr. Ballard. Today Dr Ballard again explained that Kodi’s right eye is shrinking. It has considerably shrunk actually and will continue to do so. Then he will get fitted with a prosthetic eye painted like his other one. I fought back the tears really hard. The inflammation of his eye has gone down and so not as painful for him. We left and I lost it… My baby is looking kind of freakish and he was so cute…
We went back to Gillette to pick up Kodi’s braces… Then I wrote a note and took it to Dr. Feyma with update on Kodi’s eye. Kim his nurse read it and got tears in her eyes. She said she would give it to him when he got done with current patient.
My heart is heavy. It aches for this innocent person to be healed.
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I look forward to saying “Isn’t life Grand!”

posted by Heather English on Monday, November 1, 2010

Since every day feels like our enemy knows where to strike us where it hurts the most I’m trying to not think about all the losses we keep having to face. So this weekend we notice a real difference with Kodi’s vision. Today really different. When he reaches for the cup Kodi is searching for it with his hand and when I let it touch his arm he finds it right away. When we are excited he’s using his arms more and more we are realizing he doesn’t see but is groping for stabalizing factors. Once he feels something then he fine tunes his search. He would not track anything for Lynn tonight. He definantly could not see. Very tactile but not seeing.
He sees neuro surgeon tomorrow. I’ll see what eye doctor says and neuro surgeon as well.
We will be losing our house at some point. The tragic part is Kodi. He won’t know where we are when we do have to move. He won’t walk until he has a hand to hold on to. It’s like he’s scared. He holds on really tight.
I think back to that night he was just a couple of days old. He reached up and held on tight to my finger and would not let go. He was looking right at me. That’s when I believed he had to see me. He knew me and didn’t want me to leave. It was so hard to leave him in NICU that night. Now I look at the photos I have of this little guy and I can’t take anymore of him. I don’t want to remember how horrific his eyes look now.
So if you see me crying Just know it’s because it’s raw emotions we are being reminded of. I have a very tender heart.
Love you all! Thank you all for your kindness and support.
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The latest! It’s not good!

posted by Heather English on Tuesday, November 2, 2010

So at 12:00 pm today I showed up to eye doctor. Dr. Evan Ballard. He told me he just spoke with Dr. Tim Feyma who was worried about Kodi’s vision loss. Evan explained Kodi’s eye is undergoing the next phase of “Phthisis”. (I will put a link in resources button that describes this.. This is why I got sick last spring when nurse bluntly said it was like a grape schriviling to a raisin). Then Evan looked at Kodis left eye, after dilating it, for quite some time. His eye is cloudy meaning tons of inflamation. This causes pain that in turn causes Kodi to hit it cause he hits the spots that hurt. That is probably what happened. He probably was having trouble with his right eye having pain. That was the eye he had cataract surgery on. I did not know then, but do now, that put him at risk for what is happening to his right eye now. Also since this happened to his right eye he’s at a greater risk for it to also happen to his left eye. Evan also informed me Kodi is seeing lights however no details. Like looking through fog. There is a slight chance that it’s temporary but he doubts it. Then he said that he thinks it’s auto imune thing that his body is attacking his eyes. Could be attacking oher thIngs as well. Neurology is a big player in this as well.
Then we jaunted to Gillette to Dr. Gormley about muscle in Kodiak’s neck. Then upstairs to Dr. Patrick Graupman. Patrick came in and said he just got off the phone with Evan and Tim. Kodi had according to xray a fracture in his neck but CT said No. So wear brace some during more active times each day. Help stretch muscle. Then he said come back in 6 months we will repeat xray. He is concerned about Kodi’s eyes. Relation to brain etc.
Said Tim will fill us in more on the 19th as to where to go next with all of this. However a lot will be answered when we return to the eye doctor Evan next week. That is what we all await…
I have to add: I did not get home until 6:00 tonight. I did not want to go. Kodi’s in his monster brace… Looked like Rambo…thank you all. We shed our tears and pray and get ready to face a band new awful day.
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Written Nov 4, 2010 5:26pm

I just want to add that Kodi has lost the vision in his right eye… He is also losing the eye and will have to have remaining removed and a prosthesis eye. Now he’s also having trouble with his left eye… it’s inflamed and is causing pain.
We are concerned because he is not seeing well at all and might be the same thing going on like the right eye.
We will try to keep this updated but its a rather difficult time, we are losing our house, and Kodi is going blind.
Thank you for caring…

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Not much to say! Just more sad!

posted by Heather English on Friday, November 19, 2010

I sprinted off to the eye doc… Dr. Ballard today to Kodiak’s apt. He looked at Kodi for a long time only to say he feels he’s now losing his left eye. This happens because the body senses the one eye is gone or degenerating so the body attacks the other eye as being foreign. (otherwise known as autoimune) That is also why they needed to have removed his other eye. But now it’s already happening… It’s an auto imune kind of thing. He is referring Kodi to a retinal specialist though. He wants to get Kodi in next week. It’s irritating!
Then we went on to Gillette and saw our two favorite people there. Kim, Dr. Tim Feyma’s nurse, and Tim himself… Very kind and sweet as always. He informed me he feels we have Kodi as stable as possible while going through this process and wants to keep Kodi on his meds.  He said “you guys are all so sweet and treat Kodi so good it really pulls at my heart.” he had tears in his eyes too. He gave me some homework to do. He also said he would love to see kodi a happy little guy. He said to get my book finished but first add all these new developments… Or later put out a “how’s our brother now book”. He also took Kodi on a walk with his cane. He came back and said “I think he will learn to us it. It’s quite cool! ” He was sad to see Kodi feeling with his hands for his snack and not looking for it with his eyes. Kodi gave him a hug and a few head butts as well. He also didn’t want to let go of hands. So Kodi would not let go of mine until Tim had his other hand. Then after returning from walk he would not let go of Tim until he had mine. It is really sad but he also got the sad kid giggling as well.
I feel so good to have a doctor that cares so much about my kid… But so sad as well because he feels like he has not helped Kodi much. I told him not to worry. All my friends and family feel his kindness has helped us all get through this really rough stretch. It’s doctors like these that become a gift to your family!!!TUESDAY 7:30 am we meet the retinal specialist… Hope she can save his eye! Nevermind! I don’t hope anymore. It just gets dashed! I have to say this because I don’t want to leave my friends on a sad note where my heart is right now. It will take time for me to adjust to this. All these events are so much for my tender heart to deal with… “even in laughter my heart is in pain” it never goes away. It even wakes me up with bad dreams. So sleep is no longer restful.
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The eyes of the blind will see again!

posted by Heather English on Tuesday, November 23, 2010

As much as that makes me want to cry it also reminds me to have hope.Today the retnal eye surgeon said there is nothing that can be done with Kodi’s right eye. “let’s focus on preserving the vision he has in left… He sees light” Colobomas are a result of undeveloped eye. Like a kids kickball that the seam is not fused. Kodi was born with this in both eyes. It caused scar tissue that does not grow with the eye. It is attached from front to back of eye so as he grows and eyes also grow that pulls the retna away from back of eye. This is vary painful process. They will see on Dec 9th if they can cut the scar tissue and his lense out and try to save his eye so he can see light. The idea is the retna will flop back into place and prevent further damage. But it could also make things worse quicker as well. They will not do anything if they think it won’t work. I asked Bout his other eye and removal of it and the doctor said let’s first focus on this left eye.
So like I said Kodi was hitting his eyes because they HURT. This was no ones fault. He was growing! Talk about growing pains! Needless to say. It’s tough! I want to Not hope they can save his eye because the disappointment is so shocking. Yet I do it inside every time and the fall is so hard. Guess the positive in me trying to find good… After a time it catches up with you and you realize you just have to stop hoping for anything to be ok in this sick, awful world the wicked one created. Just try to accept it and work through the pain. God will fix it all very soon…
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Written Nov 25, 2010 10:17pm

Today the retnal eye surgeon said there is nothing that can be done with Kodi’s right eye. “let’s focus on preserving the vision he has in left… He sees light” Coloboma’s are a result of undeveloped eye. Like a kids kickball that the seam is not fused. Kodi was born with this in both eyes. It caused scar tissue that does not grow with the eye. It is attached from front to back of eye so as he grows and eyes also grow that pulls the retina away from back of eye. This is vary painful process. They will see on Dec 9th if they can cut the scar tissue and his lens out and try to save his eye so he can see light. The idea is the retina will flop back into place and prevent further damage. But it could also make things worse quicker as well. They will not do anything if they think it won’t work. I asked Bout his other eye and removal of it and the doctor said let’s first focus on this left eye.
So like I said Kodi was hitting his eyes because they HURT. This was no ones fault. He was growing! Talk about growing pains! Needless to say. It’s tough! I want to Not hope they can save his eye because the disapointment is so shocking. Yet I do it inside every time and the fall is so hard.I firmly believe that some day soon Kodi will be ok. He will be in perfect health and have all the deformities gone. He will be my perfect little boy. God promises to have perfect humans on earth and all the wickedness, sickness and death gone. No more need to have doctors but everyone will work for their own food etc. This is coming soon according to prophecy. I can’t wait!

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Surgery Rescheduled

posted by Heather English on Friday, December 3, 2010

I guess the hospital could not fit Kodi in so now his surgery is January 6th. I really an discouraged by that one. I really feel that is unfair and that they don’t really care about Kodi at all. Mom is coming up tomorrow and we are taking Kodi to Dr. Cress his primary. I will discuss this with him as well. I hope they are not in a hurry because they feel he is a lost cause… Makes me quite angry.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Kodi’s eye surgery/ exam

posted by Heather English on Wednesday, December 8, 2010

Opps! This got cut off. Kodi had surgery in his left eye today. They could not do what they wanted. But instead injected his eye with a medication that would stop blood vessels from growing. Which is what happens when the retna detaches and phtheses begins. Then on Jan 6 they will do another surgery to put oil in his eye. This will hopefully stabalize his left eye. Once stabalized then will schedule removal of right eye. Kodi will be having his right eye removed and they are going to try to save his left eye. But kodi will not be able to see and he is in pain… Poor little boy!To answer questions: they have to remove the eye or his imune system will reject his other eye and his right eye is in pain. This painful process ends when his eye is removed.
Why try to stabalize his left eye? To keep it as long as possible. It’s better to have eye even if blind. But to keep it painless and sometimes it works to keep it. Chances are very low but worth a try.I’m so sorry for the confusing way this was written… Guess I was in shock…
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Double trouble!

posted by Heather English on Wednesday, January 5, 2011

So to save Kodi’s left eye step 2 is happening tomorrow. The dr will do the next thing she can. However to save the confusion I will not go into details tonight. Instead I will hopefully understand much better tomorrow. So tomorrow Thursday Jan 6 @ 1:00 is Kodi’s surgery.Just thought I’d add that Colt has been having severe headaches from possibly several head injuries as result of a concussion. He starts to feel better and becomes more active and then feels so much worse. Consistant with concussions. Anyway, also eye pain in left eye that hurts really bad. Also dizzy and spongy skull. Tonight I took him to Childrens ER. They did a CT scan that ruled out bleeds, brain tumors, but we are told to follow up with neurologist. He could also be having migranes and since he also had Lymes will need an MRI. So maybe what he’s dealing with will shed a little light on Kodi as well.

Not that I want another problem but I would like it if Dr. Feyma sees some kind of connection with the severe head pain in my boys. Colt could help verbalized the pain.

I will update about tomorrow when I can! Going to bed now.

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Surgery day.

posted by Heather English on Thursday, January 6, 2011

So it was a wild day. I have to say thank you to dear friends who came and spent the whole day with Colt, Kodi and I. Also to another who took Symone in so she would not be all alone after school. All this overwhelming support is amazing! I was getting really stressed today because the doctor and team of anesthesiologists could not decide if they should keep Kodi overnight or not… I was not prepared to spend the night and it’s hard working with new people. New doctor just getting to know Kodi and the anesthesiologists were a new team of doctors we never had seen before. This team was very young and must have replaced the older group maybe. Anyway everyone was very cautious I guess. Surgery was very late. Doctor didn’t even show up till almost 2:00 and then I dressed up and carried him way over to a united surgical room set up for eyes.

Getting suited up to take Kodi into the OR
Getting suited up to take Kodi into the OR

He had already been sleepy and so didn’t fight the mask as much as other times. I got to hold him again. It took longer than an hour and a half. Dr. Q came back and said “He has a really bad eye… I went in and took the lens out, cleaned up in there and cut out the scar bands. We will see what the retina does and if his eye tries to repair itself or if it’s too late. There was a lot of blood in his eye.” it was a long time before they came and got me. I went in not realizing he’d have a patch on his eye.

Left eye surgery
Left eye surgery

This was upsetting to see. As he was trying to get his IV out and crying. He was shaking (normal sometimes when he comes out) but I could tell he was also quite scared. I curled up next to him and he took my hand and tried to make me take his eye patch off. The nurses and anesthesiologists were there and said well he told you what he wants. I had tears in my eyes as I told him no and he started to cry. We finally brought him up and still a debate as weather he would stay or not. Finally he got ok to go home. I don’t know when we left I believe it was almost 8:00 when we did get home. I have to say thank you all for the emails, texts, phone calls, help and prayers.

There is a plus to Colt being out of school today: he took Kodi’s right hand in his and made Kodi touch his (colt’s) hair, face, ears etc. Kodi was giggling and it was cute. Kodi volunteered his giggles because he knew Colt. It was like two brothers giggling over an inside joke.
On the subject of Colt. He was acting ok for parts of the day while other parts quite difficult. He had ringing in his ears and the. Pain in his eyes at times. He got wild at home and then complained about his eyes again before bed. So we will see. He and Kodi see Dr. Feyma on the 28th.

All for now! Have to take him back in at 8:00 am to philipps eye institute. Hope patch comes off… Kind of worried about how it will look.

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Not much for updates right now!

posted by Heather English on Saturday, January 8, 2011

I took Kodi to DR. Q. She said he reacts to light. Keep putting drops and ointment in 4 times a day. Then come back on the 18th. His eye is really red and even swollen and mattery. The next couple weeks are going to be challenging I think. I’m not taking him to the meeting tomorrow. He seems bothered by it. Also it’s very difficult keeping him from trying to rub it on everything.
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Written Jan 12, 2011 10:58pm

Kodi has had two surgeries on his left eye in hopes that it can be saved. I’m thinking that this has completely failed. He used to have problems closing his left eye lid. Now he can with ease and that only means one thing! It too is now shrinking. So my precious little fighter will lose both his eyes but we will know for sure on Tuesday. We are not talking about vision loss… We are talking about his actual eyes and losing them. I think it’s pretty certain he’s lost his vision. It’s really sad!I need to add. Kodi was hitting his eyes because they hurt. They hurt not because the retina detached… That is the painless part. But they hurt because after the retina detaches the eye starts to die and shrink. That process is very painful. I have always known that Kodi hit’s what hurts. Now if we could just figure out why his head hurts. His older brother has been having severe headaches as well. Maybe that will shed some light on Kodiak’s pain.

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Dr. Q’s appointment

posted by Heather English on Tuesday, January 18, 2011

So the good news is his eye is not bleeding inside. She feels his eye shrunk because the retina was detaching and because of surgery. It was swollen before. Now swelling went down. I’m not sure I agree because he never could close that eyelid completely. I explained that and she said we will keep a very close eye on it. Come back in 3 weeks. He did turn his head away from a really bright light when she would shine I in his eye.
However, people say not to give up hope but in this instance if he’s going to lose his eye I want to know now and get off his roller coaster. I’m tired if hoping and then getting hopes dashed. I think my family kind of all feels the same way. My dear mom was crying also today as we talked… She put it well “I just try not to go there in my mind, it makes me mad and really sad.” I guess that’s how I try to deal. It’s not denial by any means but just trying to force the thoughts out. It’s hard though when you look at him. I never before realized how much we really depend on looking at a persons eyes to communicate. And every time you look at him you are reminded. So I don’t blame people for staring. We got it before but now we really get.
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Neurologist apt

posted by Heather English on Saturday, January 29, 2011

Just an update: Kodi has stabalized to a degree and when we are ready we are going to very slowly wean him ff this one med very slowly… Over the next 12 weeks. Klonopin. I’m not sure when to start that… Dr. Feyma has a friend that has a prostetic eye. He said she needs hers “updated/adjusted” it doesn’t look/work right now. So he has been after her to get it fixed. So it’s a huge decision to think about.
He is also thinking/researching about kodi’s violence towards himself. He’s father-in-law specializes in kids and this “hurting and injury to ones self” and trying to figure out what the non verbal kids are telling us. He is in Seattle WA. He was talking to him over Christmas he said and told him that Kodi was the worst he has ever seen. His father-in-law said the worst he’d ever seen was a child biting off his own lips. Ok. So Kodi does not do that! Whew!
Just a quick update on Colt: possible concussion & migraines
there are vitamin supliments that really work for migraine suffers called “migrelief” which is found on migrelief.com it has magnesium and B2 in it that together helps. You take it daily. His nurse took magnesium while she was pregnant and had headaches and she said it worked. It is something taken daily. Then alieve if he gets another headache. Lasts 12 hours.
He’s also wanting Colten to have a neuro psych eval. His head injury when he was 3 might have cause some damage. Also, it would tell us how his brain is wired. It would explain if the kid just can’t read well, can’t see letters correctly, teach us how Colten learns so teachers can stop expecting so much and blaming missing school as to why he does poorly in school. It would point out how he learns so we can help him pick up things better.
Maybe it would help. Maybe not. But the pressure school puts on him for sure doesn’t help!
We will see if INS pays for it.
We are otherwise doing ok. Mom is here. That is nice! Everyone let’s “just keep swim’n” taken from movie Finding Nemo.

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Last chance for doctors to save eye!

posted by Heather English on Tuesday, February 8, 2011

I have to start out by saying… With every bad doctors visit the day ends with some kind of blessing! Bad news in the hours of dawn does not ruin the whole day. The bad news? Kodi’s eye is bleeding inside again and they will try one last thing on Monday. Put that medication in it again and also some type of oil to keep the pressure in his eye. I think that will prevent him from seeing but possible save his eye. She’s not to hopeful it will work. But it’s worth a shot. It actually makes me sick. His life is so unfair right now that sometimes I just wish he’d go to sleep. But then the selfish me would miss his mischievous giggles, his wild behavior, his hugs, his cuddling and his sweet noises. I wish he could just hear and talk now.Well tonight I wanted to really badly cry but tonight I was unable because I just can’t accept what’s happening right now… And I was told several times be others “how can you still smile!” not as a question but as if they are in awe! I give all that praise to our ROCK! Just wait when I break it to them!

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Damaged eye

posted by Heather English on Monday, February 14, 2011

I’m not at all hopeful here. Dr. Q said Kodi’s eye is really damaged. Took out a lot of blood out of his eye. Then put silicone oil in his eye. “we will see what his eye is going to do”. You can tell when the doc says things and even they “did my best” but seem like they have little hope in what they wish would happen. She’s a mom of little kids. I’m sure she would love to save Kodi’s vision. She acts tough but is really sweet.Kodi has been sleepy and when he wakes up he’s crying. He wants to be cuddled and held. He has a patch on his eye and I’m sure is really confused. Poor kid is probably depressed! Mom and Dad will take him tomorrow to Dr. Q to get patch off. Then I think they will go home. It was an emotional night for me.

So we will see (or not).

Poor little guy!

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Eye check up.

posted by Heather English on Wednesday, February 23, 2011

Well the doctor likes the eye! Mind you we are not expecting vision but it’s red and irritated from stitches in the eye. We return in 2 weeks. He was awake last night from 3:30 am. WILD! So I’m very tired today. Then his meds kicked in and the last part he knocked off.
All for now!

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We tried!

posted by Heather English on Tuesday, March 8, 2011

So bad news is nothing more can be done with his bad or better eye. We tried with surgeries. Now it’s just see what will happen. However there is more blood in his eye and it’s collapsing. So now we wait and see what happens.
Other things happened that are not worth mentioning except some wonderful people helped. Water heater leaked and we were without hot water a few days. Interesting! Then we were imprisoned by garage door not working. We now have hot water and garage door works…. Thank you everyone for checking things out, trying things and fixing them!!! I have to say these pale compared to other things. But when they quit working it makes daily challenges even harder. We appreciate this so much so we had to mention it!~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hope in Jehovah and we will not be dissapointed!

posted by Heather English on Saturday, April 2, 2011

Yet again Jehovah proves to give us the help at the right time. My truck would not work and the best way to describe this is I was “jumping” home. Many helped to get it working… and though it still has some issues I’m positive it will get me through this month.
Tuesday this week was Kodi’s eye appointment. Dr. Q (Polly is her first name) confirmed what I already knew during the last 3 weeks. His left eye is shrinking just like his right eye. She said it was still possible on Tuesday that maybe Kodi saw shadows but unlikely. She got tears in her eyes as she said this and then again restated that his eye was badly damaged from scar tissue before she even saw him. It was worth a shot but now he’s not hitting and at this point it doesn’t seem like he is in pain. But it’s shrunk considerably since 3 weeks ago.The neurologist appointment on Friday (Dr. Tim Feyma) said to continue weaning Kodi of one of the meds we have been weaning him off. I explained he’s doing more and exploring more in the house as well but also now not sleeping well again at night due to the drugs not as strong. This week Kodi got up one night walked out to the living room carring his blanket and dropped it by the stairs, then walked back down the hallway turned the corner and into Symone’s room. Then he stood there and cried. That was when I realized he was not just awake in his bed but somewhere else. I went to him and touched his hand. He grabbed my hand and my legs and cried. I walked him to my room and sat in my rocking chair. He really cried for several minutes. Then I thought maybe he needs a drink of milk so I walked him to the kitchen and discovered on the way his blanket. That was when I realized he had been out there. I got him milk and blanket and we went back to rock. He quit crying and I walked him to his bed and crawled in next to him until he fell asleep. Then the next night he got up again and stood in the hallway crying. I did the same thing. We needed sleep this week after Colt was so sick, Symone’s headaches this week and Kodi being up so much  and at 7:55 this morning Kodi did get out of bed and started down the hall way to the living room but went too far and was in my room instead. He ran into my rocking chair and immediately walked back out and down the hallway. The whole time with his arms out front like he was using them to see.Tim (Dr. Feyma) feels Kodi will do better as we wean him off more meds later. He wants to try. I feel so bad for my little trouper but I thankful that he had some vision for this long. I just wish our communication had been there. But he seems to understand some things. It’s now ever more important he knows we are his family. When we have to move and leave his “happy place” (our home) he needs to know that we are still there for him. We have those that work with him, teachers, doctors etc all use identifiers so that Kodi learns who they are as well. I encourage my spiritual family to find an identifier like a special bracelet, ring, watch, etc that Kodi can identify you by touch when you meet up with him. He will learn who you are. Only his close family does not need this as we are the ones that he will learn how to identify by our touch and little things we do. This is so important right now. If you want Kodi to know you to have some type of identifier. It will build trust for him and help him to realize who everyone is. You then approach him by touching his shoulder then taking that hand to feel the identifier. I realize I should have had people do this all along. I was not really wanting to believe he would become completely blind. Not like this. He is learning to use his cane quite well. But we are truly his eyes.I’m not sure how much longer we have to live in our house.

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It’s been awhile!

posted by Heather English on Tuesday, July 26, 2011

In all of this I took kids camping and Kodi got bit by a deer tick… He has not really improved. In fact his eyes progressively keep getting worse. Then we went to eye doctor today. She said when I’m ready to make an apt with Dr Harris at university of MN for consult to let her make the apt. She said he does an excellent job however Kodi might still hit. Wow! Are you ever ready to have your kids eyes removed?
We see her again in two months. I didn’t sleep last night at all because I read mail that was upsetting. I don’t know where to live, what to do, how to do anything. People say “you are so strong”, “I don’t know how you do it”, and I feel I will let my friends and family down if I cry or wig out. I’ve taken on a new expression “smile and wave!” I laugh and smile a ton theses days… It’s a mask though and I’m sorry… I just am trying not to think to much.  I have a broken heart because I miss someone I really love.
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Med changes again

posted by Heather English on Thursday, August 11, 2011

So today we went to see Dr. Feyma again. We have two med changes and one is to try to get him off the med that is designed to calm him down. The other is just the timing of the med.
Then on the 12 of September it is back to gillette to meet with two psychologist and behavior docs that specialize with DeafBlind kids. We will see how that works out!!! Like usual I don’t have any expectations at all. So the next few weeks at the meetings Kodi might even be worse! We will see.We head down to mom and dad’s labor day weekend as on Tuesday Sept 6th my mom has a major surgery. It will be fun to hang out Sat, Sun and Monday with family.Next Wed Colt gets his neuro psyche eval.
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Written Sep 20, 2011 11:06am

Today after several months of visiting the eye doctor again Kodiak has been referred to a doctor at the university of MN to remove his eyes and get prosthetic eyes. I was told I need to give the word to the doctor who then will set it up. That was 6 weeks ago and now today she feels they are quiet and painless today so it is ok to wait for a little bit.
We are losing our house and now have some very big challenges to face. We were hoping to somehow keep Kodi in the only home he feels safe in. We are worried he will be terrified. When he has a little bit of vision this is the house he saw. But now he’s scared to move around too much even in our home. I’m so worried about him. Hellen Keller stated how terrifying it was when someone moved even one thing and how disorienting it was. Now without communication poor Kodi will be displaced. I feel so bad for him. My heart completely breaks for him.
Sent from CaringBridge iPhone app
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Med changes 2

posted by Heather English on Wednesday, September 28, 2011

So what dr Feyma wanted to decrease the other dr wanted to increase first to see if he gets better or worse. Then a new dr we saw. She chewed me out for having to move. She works with DeafBlind kids and she was very upset at how traumatic this will be for him.
She is a sleep doctor and saw him deep in sleep that morning and then also told me now that he has no vision he will br on meletonin for life. It’s a hormone we need to help us sleep. But we née to be exposed to light toake it. The more sunlight you get the more you produce therefore a day at the beach produces a grand night of sleep. But you also need vision. This is what she said anyway.
Kodi got to ride a horse with me. The horse’s name was Clipper. He giggled when it ran!
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Moving Prep

posted by Heather English on Tuesday, March 27, 2012

It’s been awhile. I have not had too many changes to update so didn’t see a need too bore you. Kodi went back to school Monday, Wednesday and FrIday. In January Dr Feyma and Dr Graupman the neurologist and neuro surgeon decided Kodi does not need to be sedated as much as his neck is not getting worse. So they took him off tegratol and he now wants to stand and walk around all the time. He’s more giggly and almost back to hyper kid. He only wanted one short “no no” on his arm but has regressed and wants two on again. He is worse at the pinching and scratching other people though.I think I found a town home to begin moving in to. Saturday I think I will get the keys. Then I will take Kodi and a couple of his things he knows and take there and let him explore it empty a few hours. We will have him carry his things in and set them down and then go home and again feel those items gone. Hopefully after several trips he will understand more what is happening. The Intervenor for the DeafBlind triplets told me how to do this son he will understand. It will be less traumatic on him and he will feel the difference. Symone got tears in her eyes last night and said “I hope it works and he knows it’s still us.” When everything is gone in house then we will explore as well the empty home. This will be painfully slow but it needs to be done so he understands and since this is his “happy place” he will not be so “lost” in the new place. I will keep you all posted in the process.

As we enter this new Phase I hope we can keep Kodi stable. It should work as he is wanting to explore more each day. Last night we had to go to Target for something for Colt’s school project and Kodi suddenly took off alone and ran down the wide isles. I had to run to get him. He was giggling the whole time. Almost like a kid that “got away” from parent and thinks its funny. But he can’t see so that’s scary! He also knows we will come after him. At least he does trust us.

Please keep Kodi in your prayers that this process works. We have no other choice and I can’t live with him regressing anymore. Each day we are one day closer to that new world. Oh! My neighbor Jen O? She is so upset we are moving!

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Moving update!

posted by Heather English on Wednesday, April 4, 2012

We did not go with property that was available on Sunday because it just made life much more complicated and the property that is easier for school transportation, and more space and has a basement for my little girls emotional well being as well as my parents and I knowing in bad weather they just need to go downstairs in a basement rather than panic. Also since Kodi has caregivers and intervenors it’s just a block and a half away so they don’t have to search to find it and they will have more space in the basement and upstairs to work with him. Also a deck out back and a tiny yard.
Since I was told this place was mine on Saturday at 6:30 even though I can’t move in until May 1st it’s so good to have a place we are moving to. Then on Sunday I was called and told I might have let sheriff know right away Monday am. Sarah came and helped me pack as it was alluded to me that they might come and give me 48 hours to get out or come with movers and move me out. I was a wreck on Sunday. Kodi was crabby all weekend and on Sunday am would not stop crying. I felt so bad for him.
Monday I went to sherrif and they told me to take letter to judge and to come to court on Tuesday @ 8:45. In the mean time my mom and dad left and came up here and Mark, my dad, Lud moved all my big things to storage. We had Kodi help with his bed, shelf, and couch and he was NOT into helping. He actually got mad at me and started hitting his eyes so much more. We had to worst time getting him to sleep. Once we did he slept with Symone as her mattress was the only one still here. We decided to take him to court with us Tuesday. He was taken places with Mark, and 3 intervenors. I kept trying to pack and make the living room area safer for Kodi to just walk free. He was trying it out around 5:30 last night when he was getting so mad that when he got off area rug there was nothing their but either bins or air. He started slamming his head on the floor and hitting face so hard. I decided when kids got back from walking dog next door to take them and got get supper. He got in truck soooo good. He sat there, didn’t hit and started cooing. We got supper and he was so agitated I gave him a bath and it didn’t help. We gave him meds and it wasn’t working so we put him back in the truck and just drove around for about 20 minutes he finally fell asleep and we drove another 10 to make sure. I put him in same place to sleep. I’m not sure how he will do but we can tell its upsetting him for sure. At least I’m not changing vehicles right now too. He’s at school today so we will see. No new notes on door and no phone calls yet. So each day with no news buys us another day. Thank you mom, Sarah, and Ilene as well you are a great help. I will get back to packing and stacking now.
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Still in house!

posted by Heather English on Friday, April 13, 2012

Ok, sooo Kodi has been very persistent in hitting his eyes. We tried sleep mask and it worked for 5 minutes. His eyes are bruised and red. We took him to Dr. Feyma and he wants us to try a deep pressure vest again. So it’s on order. Let you know how that one goes. Then if doesn’t change try a new med after taking him off risperdone and try the med for OCD. However, last night at target I got him a gel sleep mask and put in fridge to help with pain in eyes…. HE WENT TO SLEEP. Today his teacher said the green gel mask was really working. It probably feels soothing after he pounded them so bad.

We are still camping in our home and it has it’s challenges for Kodi that makes it hard but the rest of us are fine with it… Each day goes by one day closer to being in the new townhome

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Moved in and still getting settled!

posted by Heather English on Tuesday, June 26, 2012

So the move ended up different than expected but we are moved. Thank you to so many wonderful loving people that made it possible. Kodi did better than expected in some ways. How we did it was successful in that he did understand and was mad we moved his bed out and didn’t have a bed for a month and for two weeks he was holding a grudge and avoided coming to me. But the day he forgave me was so funny. He wouldn’t stop giggling and wanted to be held. Then when we spent the first night here we had his bed all set up so he went to his bed and was so happy to have it back. The challenge of him turning right when coming out of his room at the other house was just the hall way and my bedroom. Now the past 4 days when he wakes up early he turns right and ends up in Symone’s space the loft and on the other side of the loft my room. The only concern is another 3 or 4 steps straight and then if he turns right he will go right down the stairs. That is not all bad except every time he does this he also has a blanket on his head. I worry he does this he might lose his balance…. My kids remember the frog alarm that their greatgrandma had on her house boat and her porch that goes out to the pool that ribits when a person walks by. They think we should get this so we wake up when he goes out of his bedroom…. Hmmmm maybe however it would still mean we need to act with lightening speed and not something we can do coming out of a sound sleep….. still thinking about this.
Kodi is exploring with his hands more and more our space and seems to think its funny. We got a table that is counter height and love to have family worship at it and eat as a family at it as well and if Kodi decides not to sit he stands at it and acts quite funny!!! He becomes a human jumping bean.
Other things about him have continued to be unchanged… He still hits his eyes and head bangs at the table and things and us… Sunday he got me good two times aand he chipped a molar that I had to get fixed after Work on Monday and my jaw hurts terrible. I had to talk all day at work and as the day went along it just felt worse and worse. Dentist doesn’t think I broke it and neither do I or I would have had her xray it but if by the end of the week I still can’t eat/chew I will have it xrayed. I just can’t believe it is. I think just sore ligaments and will just need to heal. But my tooth is fixed. This serves as a warning to all who come in close contact with him beware of his head. My mom and I have had broken bones from him…
Kodi had a heart appointment last Thrusday and his Dr as some of you may remember from heart surgery was very kind. Kodi cried through his EKG but then giggled through his ECHO and then he sat on Dr Bakers lap until time for Dr Baker to listen to his heart. He said his heart is stable and if Kodi had all normal functions and wanted to play sports his tricuspid valve would need surgery but since Kodi is not going to play sports its not necessary unless we notice as he grows he’s having blue spells etc. Then he added of course if he decides to join special olympics…. well we know he will not be doing that… So this was good news.
Symone has taken up Yodling and Kodi finds it very funny. Anyway she was on her iPhone and was listening to music with Kodi and each had one earbud in their ear and he was giggling. I was on my way home from work Friday and called her. She answered with the earbuds still in and as we talked a little she said “Kodi is listening I think to you…” So I said what I always have said to him “Kodi this mama! I Love you baby! I love you Kodiak!” and he giggled. Then for the sake of humor I said “When I get home I’m going to kiss you on the nose!” he giggled. When I got home I signed like usual when when I get home… “Mama’s home” and I kissed him on the nose and he giggled… if he understood or not remains to be seen but the simple fact that he seemed happy is what makes me continue to do the same thing.
We went to the state park on Sunday with friends… Kodi was being brave and exploring on his own and just walking in free space on the grass. He also had fun dancing with Symone while Colt chased gophers and bugs and played ball. It’s like he accepts he can’t see now and just wants to explore again only now with his hands. He still tries to get away from us and thinks it’s funny when we worry about him getting close to something that could hurt him and we veer him away. I think he liked the freedom of no one hanging on to him and not having to hold hands etc. We saw two fawns that was also very cool. And we all got some sun and vitamin D…
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Our Summer!

posted by Heather English on Wednesday, November 7, 2012

First – We are not entirely settled in our NEW digs yet… But my kids tell me this is the best summer in a long time… although it came with some really low lows….
We did a ton of just us family things on weekends Majority of it was outside and also swimming at an outdoor pool. We did hiking and other things. We visited friends, and helped a GG move to her new suite…
Papa built a lovely bed for Symone since she’s in a loft with no closet or storage. We painted, painted and painted…
We got to see so many friends… their kids and my kids became new friends. My jaw finally healed… however now i’m healing from a concussion that happened Oct 19th. My parents had just arrived and Kodi was pushing my mom around and so I grabbed him and pulled him to me to sit on a chair with me and he headbutted me so hard it felt like I was hit by a bowling ball… My eyes would not open and I was very very dizzy. My dad to me to ER in Stillwater and they said I had a concussion. He asked me to open my eyes and my right eye would not open. It felt open but I could not see. He lifted open my eyes and asked me to track his finger… I could only see out of left eye as he moved it towards my right side I was so dizzy and nauseated  I thought for sure I was going to get sick. I could not see his finger with right eye but could with left and could tell it was there. My whole face on right side was numb and tingly. I was unable to really open my eye until Saturday night…
I want to also thank everyone for helping us move… I have been unable to get to all the thank you cards I needed to send out.
The other thing that happened was Mike called in June the 8th with news to tell us his dad was given two weeks to live. I asked him if the kids should call… On the 10th he texted us to tell us to call him right now as he is awake. The kids talked to him on speaker phone for a few minutes. He also said to “listen to your mom!”. It was a little longer but July 16 Mike texted that his Dad was sent home on Hospice and not expected to live a week. I did not hear anything else and so on the 20th I texted and asked if he was doing ok. I got a text back “just sleeping all the time… it wont be long.” I had a very difficult time with this… For reasons I won’t go into here.  Then at 11:30 I got a text saying he took his last breath just a minute before. Then I told kids. This was a very difficult and emotional week on us all.We went to my parents a few days. We did a 5K at the MN Zoo with a ton of friend. I did it pushing 75 pounds… Kodi and his stroller… Then we topped of our summer with a trip to a water park in Warrens WI on Labor Day weekend…with Nana and Emily and Abby and the kids were so awesome with Kodi… we got cranberry toffee, dried cranberries etc… And the next day they all started school.We had trips to ER and Dr’s like usual, car troubles like brakes and leaky sunroof.

Kodi got to do a ton this summer. He has finally accepted that he is blind and that he still can do things. The kids watched him alone for a week and he began to explore our new digs with his snowplowing crawl. (5 point crawl where he drags his head on the floor) He walks upstairs, sits at our new high table, and is signing more a ton more. Especially when it comes to peanut butter MM’s and swimming. He was very clingy at the beginning of summer and floating to wanting to do it himself. He had so much fun on the water slides at 3 Bears Lodge with me, Nana, Emily, Abby, Symone and Colt. He would sign more and we’d hall him up several flights of stairs with him holding two peoples arms as they walked him up the stairs he found it easier to lift his feet up rather than walk with… goofy kid.
He has adjusted to school ok. He goes Monday, Wednesday and Friday… This year we are trying to get him used to braille and to learn it…

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Beautiful News!

posted by Heather English on Wednesday, November 7, 2012

We were asked to attend a DeafBlind conference in Wisconsin Dells this last weekend…Another water park adventure… (all paid for by the conference with free lunch and supper as well and Friday and Saturday nights free rooming and water park entrances) Kodi signed more so many times as he just wanted to swim or go on another water slide.. At the two meetings on Saturday An announcement was made that there will be a national announcement about all DeafBlind receiving communication devices for free no matter the age. This definition is anyone who is legally blind (sees 20/200 with glasses or worse and who is deaf without hearing aides and includes those that need them and use them). Watch for the national announcement in the next week or so. Included in this is iPads that they now have found a way to help these people communicate via braille. Kodi will get two one for school and one for home. They will also provide training for any and all who want to work with Kodi to learn and help teach him in this endeavor as well. I thought at first how is this possible as he can’t see at all… well Heidi and Jolene (program directors who have know Kodiak since birth and have been in on his IEP meetings) both told me that Kodi had held a special place in their hearts as he is a “true Helen Keller” and they wanted him there to be first on the list to receive this equipment and get set up as he holds a special place in their hearts. I asked how an iPad would help him… they reassured me I will be communicating via iPad with him soon… Not only will he learn quickly but he will be able to email, text and receive these as well and will learn quickly as he’s a smart little man in his own silent dark world. But clearly he is loved by so many. I broke down and cried! It won’t give him ears that can hear, it won’t give him eyes to see with but it will give him a way to communicate  Well technology in this case is on our side. I just had to share. I’m sure you all have questions… as I do… I will keep you in the know as I learn more… I’m a skeptic with so many of these things with Kodi… n. I’m still in a state of shock here so bare with me if I flood with tears or giggle with excitement!
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I think this just about catches the past few years up to speed…
I will add some photos later…
Heth

2 Responses

  1. Oh dear, Heather – This was indeed hard to read, but I’m glad you posted it. I pray for grace, mercy, and peace to you and your family. ((Hugs)) Rani

    • Thank you for your comments. The thing is my closest friends and family have witnesses this and the improvements that have happened. I was hard on us all and what I posted only skims the surface. It’s that bad. But so many ask what it’s like to have a DeafBlind child and to go through all of this. I feel that we have come a long way with him but don’t have it all back. But now it’s out there for others that go through these horrific things…