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Friday, April 19, 2013 9:23 PM CDT

Wow its been a LONG time!! He has now had over 30 surgeries including 5 teeth pulled and his ear drum rebuilt with the removal of a cholesteoma. He is doing fantastic!!! He is getting ready to play Miracle League baseball for the 4th year now. He is doing GREAT in therapy and he is now mainstreamed into the local school for half days. We moved into a new handicap accessible house so he can use his power chair full time. He LOVES it. Life is so much easier now. He is soooo smart and just full of joy.

Wednesday, December 8, 2010 5:30 PM CDT

I know it has been a long time again but it has been really hectic. Kody had another stay in the hospital for a pressure wound from the cast when he got it off. He is in the Children's Institute now and hopefully he will start recovering. He has an extremely hard and long rehabilitation to look forward to. He will be in for his birthday and also for Christmas. We are going to try to get him a day pass if he is well enough. He is such an angel and none of us could love him anymore than we do. It hurts to see him suffer so much. Thanks for checking on Kody!!
Randi
Grandma




Nov. 17, 2010

Sorry it took so long to update...things have been very BUSY! So we went to Childrens Home for a week and Kody did NOT like it..it was a wonderful facility BUT he was very depressed when night time came because we would wait for him to fall asleep and then leave. Then because they had to wake him every 2 hours, he would be up all night. It was very, very hard on him to say the least. So I decided I could do it at home and after 5 days of being there I started the process of bringing him home. It was just to heartbreaking watching his spirit being broken. So last Wednesday November 10 he got to come home!!! We had a very rough night...he was up calling me all night and was very out of routine and his foot starting hurting. Called is doc in the morning and was on our way there in an ambulance (only way to transport him) then all of a sudden his pain got so bad he had to be rushed to the nearest emergency room. I have never seen Kody in so much pain. At the ER they cut some of the cast and there was some swelling and it was decided it could also be muscle spasms as well. So they just gave us more Roxicet and Valium. That night went a little better. Now a week later Kody is doing fantastic. He is just such a little champ. He NEVER complains...always smiling...everyone who visits is just so amazed at well he has adapted to not being able to sit up at all and how he is just sooooo happy! We bring him into the living room every evening to have family time. I made such a good decision to BRING HIM HOME!!!! Only 3 more weeks to go!!!! Then tons of therapy BUT we can handle anything =) <3 Thanks for all the support.

Thursday, November 4, 2010 12:38 AM CDT

Well things did not go exactly as planned.On Monday when it was almost time to go to Childrens Home Kody decided to get a fever of 102 so they would not let us go! They wanted him out of bed, so we got him up in a wheelchair and took him to the playroom and outside (which he loved). Then because of the fever they had to take out his central line because of chance of infection. It left really bad burn marks on his skin because of his reaction to tape...4 hours later they decide they want to get blood work, urine sample, and X-rays. Of course he no longer had a line, no catheter in anymore, and had to be tortured for X-rays! He was soooo worn out! It was a rough night. Finally all test were negative and the next day the fever broke and at around 5 in the evening we came to Childrens home. He is doing good here but he is in alot of pain and uncomfortable because he can't move and keeps saying he wants to get better. It is very heartbreaking to watch your child in so much pain and know there is nothing you can do....they have to bother him every 2 hours 24 hours a day for 6 weeks =(

Sunday, October 31, 2010 2:39 PM CDT

WOW it has been an exhausting 4 days since surgery! Kody is doing AMAZING as always....he is smiling and playing with his cars and doesn't complain at ALL unless being bothered by nurses or doctors! So the minor complications were a blood transfusion was needed on Friday due to his blood count being too low and he could not bring it back up on his own. He also had a fluctuating fever up to 102 and they were concerned that it was either his central line, catheter, epidural, etc. So he had to come off of his epidural a little earlier than expected and they also pulled the catheter. Luckily the fever went away!! He was having blood come out of his ear so now he is getting ear drops to prevent infection for that as well.


Today is Sunday 4 1/2 days later and they decided not to do the Levanox (blood thinner)which would have been 2 injections a day for 6 weeks (yayyyy) because he was having nose bleeds again. He also has not had a bowel movement so he is on something for that (I forget what). He is now on Valium for muscle spasms and Toridal and Roxicet for pain. He is on his way to the Childrens Home in the morning! Kody is truly an inspiration and a miracle <3

Thursday, October 28, 2010 2:06 PM CDT

Kody made it through surgery successfully after 10 hours! It was very exhausting for everyone in the family considering it was only supposed to be a 4-5 hour surgery. He was AMAZING as always....we went to see him after he woke up and he was already trying to answer questions and talk. His voice was very, very horse and it was soooo upsetting to see him like this. The cast was MUCH worse than what we were expecting because it was above his chest and all the way down to his toes as one body cast and his legs were very far apart with a bar in between. He had incisions in many different spots and IV in his neck and arm and cast/splint on his left arm. Then we found out that he had to wear the cast for 6 weeks instead of 4 =( It was just very upsetting!
So now the next day Kody is doing extremely well and eating very good. The doctors are truly amazed with him. He is smiling though in some pain. He will most likely need a blood transfusion tomorrow due to his blood count being low. He has an epidural, and he is on valium, toradol, and roxicet. They are trying to keep him very comfortable and keep him from getting muscle spasms. He is still getting some but he is just doing so amazing....I am soooo proud to have him as my son =) <3

Wednesday, October 6, 2010 8:58 AM CDT

Well it has been a VERY long time since the last update! Kody is doing very well...and is as sweet as EVER!!! He is learning to talk so well and he is my little chatterbox. I love having conversations with him. He is doing very well in school and had a wonderful summer. He did have to have an emergency appendectomy and shunt revision in April and spent over a week in the hospital, but he did very well and recovered quickly. He had a great season with his miracle league baseball (one of his favorite activities)! He had to quit horseback riding (favorite activity) due to extreme pain in his hip!
Kody will be going in for extensive surgery on October 27 for hip surgery for the 2nd time (hip is completely out of the socket). (Thank God not both) So to prevent it for a 3rd time, they are cutting nerves and lengthening both thigh abductors, and shaving his pelvic bone. Then he is having both ankles fused with pins and casting, and then lengthening all arm tendons (thumb, wrist, elbow,shoulder). This is to prevent his body from becoming deformed from the CP. So he will have a cast on his whole left arm, whole body, and both feet including ankles!!! Then for repeated nose bleeds they are cauterizing his nose and then scoping and cleaning his ear to prevent recurring ear infections. I am VERY worried for him and just praying this all turns out for the best. I cannot even look at Kody without getting really upset and thinking of all the pain he is about to endure and yet he is just so strong. God really blessed me with a miracle =) Kody will spend months in hospital and rehab....please pray for my baby =)

I just have to mention the Children's home which is a place he will go after his stay in the hospital. He will stay about 3 weeks or so in there. We have had experience with stays in there before and it is amazing and takes some of the responsibility off of us at a VERY difficult and painful time for Kody.

Saturday, January 16, 2010 11:07 AM CST

I know it has been FOREVER since this has been updated and I am sorry about that! Kody has been doing wonderful hence the no updates. He is talking in sentences, still a little hard to understand but he is talking so no complaining going on here! He comprehends pretty much everything. He can spell, read many words, write his name, walk with his walker and still melt everyones hearts!!! He works hard at everything he does. He is soooo sweet.

Kody is supossed to go to the orthopedic Dr. to see about hip surgery again but they are going to have to come up with some pretty convincing information in order for him to go through that again. If we can put it off for a couple years then that is what we will do. We seem to have gotten a little reprieve from Dr. appts. right now. They come in spurts and now is a down time. :=))

He is doing well in school and so is Kassie. Kassie is in honors now but isn't sure she likes it so we will see but she is also doing well. Can't wait till the weather breaks and the sun shines and we can actually go outside and do something!!

Kody has alot of friends who are still having seizures and 2cnd brain surgeries and some even 3rd brain surgeries so please pray for them. No child should have to go through ONE of these surgeries let alone 2 and 3 of them and then still have seizures! If you could remember them in your prayers that would be appreciated. Also the people in Haiti and our fallen police officers.
Thanks and God Bless you and your families.....always give your loved ones hugs and kisses!!!!!
Randi

Saturday, March 28, 2009 8:54 PM CDT

It has been awhile since I have updated! Kody is doing wonderful! Last week he had a round of botox injections and he is really trying to use "lefty". Well as much as Kody will. We have never focused that much on making him use it, but always to use it as a helper. So we are trying to work on using it to help him dress and stabalize paper and books and he is doing wonderful. He is also doing FANTASTIC with his reading!!!! Words cannot describe how happy his therapist, teachers,neighbors, and myself all are of Kody in this area. He will read words such as "excavator" and "elephant". I just can't believe how much that boy amazes me everyday! I have just come to realize within the past few weeks that I really do focus on the negative sometimes. Such as the fact that Kody does not walk or talk like most of the hemispherectomy children, but he is my little shining star and I need to be so thankful for what he does do because they are all so different in so many ways! We just have to be thankful for what each of our children do because they are a gift from god and they are all miracles! Kody is the most pleasant child I have ever seen in my life and always has a smile on his face. I have never met anyone in Kodys life who has not fallen in love with him and that a piece of Kody will stay in their hearts forever! That is a gift that God gave Kody =)

Kim

Thursday, February 19, 2009 7:39 AM CST

Wow I do not even know where to start. My worst nightmare possible came true yesterday and I am feeling horrible to say the least! I went to Kodys school to pick him up at 11:30 to go and look at wheelchairs. When I go in they tell me 'We just want to let you know, this morning Kody had some sort of episode. They proceeded to tell me he was in a stander and he turned chalk white including his lips and they immediately got him out and that he felt kind of limp. They ran him to the nurse and his blood pressure was only 67/40. They laid him down for awhile and then he was fine. They they told me this same thing happened about 6 weeks ago (but they did not tell me) They really thought that it was nothing at that time (they did not take his blood pressure that time. Of course we assume it was due to a 'S' ( I cannot even type the word.) So we went to the ER for 7 hours and they ran a shunt series, CT scan, bloodwork, EKG. Everything was negative. They want us to follow up with neurology and cardiology to see what caused the syncope. His new diagnosis that I definately do not want! BUT I will take that diagnosis if there are NOT you know what attached to it. So please keep praying and praying that he is not having any and that is not the cause. I think I am going to have a nervous breakdown. Then this morning when I honestly cannot handle any more stress I get off the phone with school telling them what happened yesterday and the phone rings 10 minutes later and its school on the caller ID and they say ' Kody was just in an accident' but they said it was just a fender bender and Kody is fine but I only take that with a grain of salt. Now I got to go find out exactly what happened I am on hold with the bus company as we speak. Please keep our family in your prayers! I CANT HANDLE ANY MORE!!!!!

Monday, February 9, 2009 7:56 AM CST

Hi!
Spring is right around the corner, Thank goodness. It has been an awful winter here in Pittsburgh this year.

Kody has been stable as far as his health goes which is GREAT! He went back to the dermatologist and he was formally diagnosed with Linear Nevus Syndrome. This doesn't change Kody at all it really just explains some of the issues that he has. For instance his added eye problems, ear problems and jaw problems to name a few. It means that he will have to be monitored by the dermatologist more closely as he will be prone to cysts and tumors that possibly could be malignant as he ages. You know us.....we will stay on top of it. Kodys left leg is exceptionally tight and that could be why he has so much trouble walking so we are also going to address this problem.
Kody CAN READ! Yes I said he can read. Short sentences but he can do it! He can spell and he can do simple math. He is just excelling in his cognitive abilities. He is talking, he is just a little hard to understand sometimes. He is learning to use the computer.

Kassi got straight A's and is just so grown up anymore. She is doing really well in everything. She is the best sister that Kody could possibly want!
She still likes to be heard (umm as in temper flare-ups) but girls tend to like to be heard..lol.

I would like everyone to say some prayers for some of Kody's friends. Some are still having seizures and some have pending surgery. Children and their parents should never have to go through this but unfortunately it happens. Please think of them when your saying your prayers.

May God Bless!
Randi

Tuesday, December 16, 2008 7:03 PM CST

Well Winter is here and Christmas has almost arrived. We have so much to be thankful for. I do want to say that there are a couple of Kody's friends who have had surgery already and unfortunately are having seizures again and could really use your prayers. It is hard enough going through this surgery once than to have to go through it a second time. I can't imagine what they are going through.
Kody is doing well and staying healthy right now. He is still working on his skills of pronouncing his words so people can understand him better. He is doing a good job. He is also still working on walking with his walker with assistance. He does struggle with it but he tries very hard. His new past time is CARS. He loves cars. Any cars, any trucks...lol.
The winters are very tough for Kody's mom and dad because we live in a very hilly area and unfortunately we get alot of snow and ice. Their driveway is slanted and so is his ramp so it makes it difficult to get him down it to go anywhere or get on his school bus. Plus carrying him up and down the steps in the house daily gets very difficult especially for Kim, his mom. If anyone knows how to maybe get a stairlift can you please email me. It would make their life a little easier and insurance only pays for so much. Their house is on the small side so it would have to be a smaller stair lift in order to fit on the steps. Just a thought to put that in here......you never know.

Everyone have a very joyous holiday and remember what is important through the holidays..... It is your love of others and the strength of your faith. This is Jesus's birthday so don't forget that part of it.

God Bless you and yours through this holiday season and all year long!
Randi (Kody's grandma)

Tuesday, August 12, 2008 1:57 PM CDT

A PICTURE IS WORTH A THOUSAND WORDS!!!!

PLEASE PRESS THE ARROW TO PLAY THE VIDEO






Well with summer unfortunately coming to an end soon I have to report that Kody is doing outstanding! He went for 3 weeks of something called "Conductive Ed" at the Childrens Institute in Squirrel Hill for approx. 3 hours a day for 5 days a week. They work on various things but mostly strength. Then when that was over he started something called "Intensive Therapy" at Childrens Institute in Wexford for 3 weeks approx. 3 hours a day and 5 days a week. During both times he continued therapy one day a week in the eve. for 3 hours working on PT, OT and Speech. Also during this time he continued horseback riding one day a week.
So needless to say Kody has been one very busy little man.

His progression has been amazing! He is now talking in some sentences. He does have lots of trouble with certain letters and he is a very quiet speaker but he is speaking! He knows his opposites, some counting, and some spelling of words which means he can read a couple words.
He is walking with the assistance of a walker but the only assistance we give him is to hold on to the walker because he doesn't have full control of it. We still have to work on strength and balance.
We also found out that Kody does not need and WILL NEVER NEED surgery on his Palate. (that is the roof of his mouth). We are ecstatic about this! One less surgery for Kody! The cranio facial Dr. and all of his staff were amazed at how far Kody has come in 6 months since they saw him. I know me and Kim were beaming when they kept saying KODY IS SOOOO AMAZING!!!! If Kody were conceited he would have been beaming too....hahaha.

WE ARE SO VERY PROUD OF OUR KODY! GOD HAS BEEN GOOD TO US AND TO HIM! We love him so much! We want to thank all of you for coming and catching up on what is going on in his life and for the all the prayers. I believe that is what is helping Kody move forward!
When we get a chance I will post a video of Kody walking and talking.

Randi

Wednesday, May 7, 2008 7:23 AM CDT

June 19,2008

Kody had his botox today and did pretty well. Now we wait a couple days and see how good it worked and then it is work work work for Kody to keep it loose. We took him horse back riding today even though he had anesthetic earlier but he didn't make it all the way through....he just was to tired. He will feel better tomorrow. He is such a trooper. God bless!
Randi






Kody is doing really well at the moment. His horseback riding just started back up and that is his favorite thing to do. He also just learned how to ride his adapted tricycle so we are so proud of him. He rode it for 2 hours the very first day, we were so amazed with him. He was very sore the next day. Well we went to the Cerebral Palsy clinic and they decided that Kodys arm is really tight and they think he should have another round of botox injections. So I am waiting on the Neourosurgeons office to call and schedule that. He will have to put to sleep to have that done since they do 24 injections and they are very painful.

Kody has been talking very well lately. He is very hard to understand but he is putting together 3-5 word sentences at times. It sounds like someone mumbling but he is making such good progress. His speech therapist is very impressed with him =) He is also learning to spell and we think he can even read a little bit. It is hard to tell since you cannot really understand his speech. His fundraiser is in 2 weeks so we are now counting down the days and it is starting to get stressful but things are finally falling into place. I am so thankful that the nice weather is finally her so we can start to swim and enjoy going to the park all the time. Summer is definitely Kodys favorite time of the year besides all of the therapy he will have to get during summer. He will be in one therapy program from June 23 until July 19 from 1:30 until 4:30 and then the next program starts July 21 and goes until August 18 and is 9:00-12:00 so most of Kodys summer is working hard but in the long run hopefully it will all be worth it!!!! Plus he gets his regular therapy sessions on tuesdays for 3 hours and Horseback riding on thursdays also a few regular sessions of PT, OT and speech during the week (sigh)(2 a week of each to be exact! Thank god we have a pool and we get to swim every evening. Sorry to ramble I am just trying to give some insight of our hectic summer =) Thanks for reading and Kody is doing very very well at the moment!!!!

Kim

Monday, April 21, 2008 11:03 AM CDT

Well everyone, First of all Thanks for all the comments and messages, We really appreciate all of the support we have received!!! It really means a lot to our family! And guess what all of the prayers have worked !!!! Kody does not have Glaucoma. We arrived at the hospital at 6:50 a.m. and checked in and as usual everyone there fell in love with Kody's sweet smile and they were all fussing over him. Then we went to the play area and he was playing with cars and we were waiting for the doctor and the nurse came and put drops in his eyes. Well Kody did not like that at all. He screamed his lungs off. They took him back and about 30 minutes later the doctor came and got me and Kody's dad and I was just praying for once we would get good news ( because I was so sick to my stomach all morning that what if we were told Kody was going blind) and that was when we were told that Kody did not have Glaucoma. His prescription is just getting much worse. I can deal with that!!!!!! Glasses will correct that. So now we just have to go and buy some new glasses because insurance will not pay for another pair this year. So he woke up and was screaming for the next 30 minutes and I could not console him at all =( We felt so bad. He just wanted to leave the hospital so they let us. We took him to Ihops but he wouldn't even eat. So his eyes are hurting and thank god another surgery out of they way. So 12 down a few to go. Thanks for reading and praying.

Kim =)

Monday, March 31, 2008 4:07 PM CDT

Hi,
Kody's fundraiser is on its way! It is set for May 17th..doors open at 6:30 and Johnny Angel and the Halo's start performing at 7:30. Tickets are $25.00 and includes entertainment and beer and pop. We are having Chinese Auctions with lots of good stuff.
Please attend if you can. Tickets will be sold at the door also. Please email me if interested!!!!!!
Now on to the other news. Kody went to the eye Doctor today for a regular check up on his eyes and the visit was horribly unexpected news! Kody thinks that Kody has pressure building up behind his right eye but the only way to find out if it is it to have him put under (again) and look in his eye to see. If he does it would mean he has Glaucoma and he could go blind in his right eye. The reason he is so concerned is because his eye changes so drastically in 6 months. The best case scenario is that his vision has just gotten that much worse. Thats pretty bad when that is what you wish for.
He also has scar tissue behind that right eye that he said he wants to look at that has been concerning him for some time. Please pray that it isn't Glaucoma. Poor Kody has enough to deal with. We are trying not to let this get to us but sometimes it is just so tough!!!!

Kody's surgery is on April 21. Please say a prayer that morning for Kody!

God Bless!

Randi

Friday, January 25, 2008 8:01 AM CST

Fundraiser for Kody May 17, 2008

We are going to be having a fundraiser for Kody on May 17, 2008. It is going to be at the Lawrenceville Moose and Johnny Angel and the Halos will be performing. Tickets will be $25.00 and will include beer and mixers. There will be food, Chinese auctions, 50/50 raffle, and more. Please join us to help Kody pay for hyperbaric chamber treatments, conductive ed, DME, and other things insurance does not pay for. Thank You for your support

I will be posting more information shortly on how to purchase tickets but you can purchase them at the door. Thank you so much!!!!!



Well Kody has been doing very well lately and working very hard. We have been working so hard on walking and standing and he is doing a little bit better. He is drinking much better out of an open cup, now only takes one bottle a day, the rest of the day drinks from a cup. He is talking really well, he tries to repeat almost everything we say. He is very comparable to a 2 year old with his speech. We are very proud of him. He has been learning math lately and has been able to do 1 all the 's very quickly such as 1 6 = 7 and 0 all the 's quickly. We are still working on the rest. He has an appointment on Monday at the craniofacial clinic with 4 doctors. I will update after that appointment since I have a few concerns. Kody is going to Monster Jam with his daddy and pappy in March and sitting in the very front. He is sooooo excited about it. All he talks about now is "monster trucks". And so Kassi is going to High school musical on ice with mommy and grammy and we are sitting in the 3rd row from the ice. She is also soooo excited since we couldn't go to Hannah Montana.

We are having our first meeting to discuss a fund raiser for Kody to pay for hyperbaric chamber therapy and other things insurance does not pay for. After our first meeting there will be more information posted about the fund raiser event.

Thank you for praying for Kody and for all the comments!!!!

Tuesday, January 1, 2008 11:31 AM CST

Oh my....I am such a slacker! Sorry!
Kody is doing well and he is talking up a storm! He is trying to communicate everything through speech now. He no longer uses sign. Of course Kim and Chad can understand pretty much of what he is saying but it is a challenge for some people. But all we care about is that he is trying. I remember when we had to push on his belly last year to show him that he could make sounds. To make the air come out. He realizes now that he can tell people what he wants and he is as thrilled as we are!

Then on to the standing. As of yesterday he is aloud to bear weight again. He hasn't been able to stand up straight since he had his first hip surgery 2 years ago. We are proud to announce that Kody is standing holding on to something pretty straight up and without alot of complaining for the first time in 2 years. So needless to say we are ecstatic about that too!!!!!!!!!! (and so is he!)


We have soooo much to be thankful for this year......all the little blessings and all the big blessings in our lives. I couldn't begin to count them all. I can only hope that this coming year is going to move forward for Kody and he continues to strengthen his muscles and his mind.

Our family wants to wish ALL OF YOU A HAPPY NEW YEAR!!!!!
And to thank all of you for your continued support and prayers for our little miracle guy!
Randi

Saturday, November 17, 2007 9:41 AM CST

Hi,
We are finally home...Kody seems to be feeling better today. His surgery took about 2 hours and he did not need a blood transfusion. The hardware is out and we got to keep it (lol) and it is bigger than what we thought. He was in alot of pain so he was on morphine, valium and roxicet. It took an extra day to get the pain under control so he had to stay that extra day in the hospital. He is now only on valium (as needed) and roxicet. He was having terrible muscle spasms like last time and that is what was harder to control. He had to get a hospital bed for at home so he is more comfortable but hopefully every day he will feel better. We are happy that this surgery is over.....one more surgery out of the way.

Kody lost his second tooth....first one was knocked out from bus accident....this one was loose and anesthesiology felt they needed to pull it so he didn't asperate it during surgery.

We had an awful time at the hospital this time but typically Childrens Hospital is very good. Just some bad nursing care this time. Kody is trying to talk and copies everything we say! It is so exciting. He actually communicates through speech alot of the time now. You just don't realize what a breakthrough this is!!! He tells us what is hurting and he is even bossy sometimes now. Yesterday at the hospital he was telling Kim (his mom) to "SIT DOWN NOW" It was funny even though he was being bossy.

He goes back in 2 weeks so no weight bearing or baths until then. I will update again. As usual thank you so much for your prayers and support. God always takes care of Kody and we know that and feel secure in that even though once in awhile that doubt trys to come through but we don't let it!

God Bless!
Randi

Wednesday, November 7, 2007 8:27 PM CST

Kody's surgery is coming closer (November 14) and I am thinking of the poor little guy going through yet another surgery. I wish he didn't have to. He is so happy and has no idea what is to come. We got 2 people to donate blood for Kody. His Aunt Carrie and his Aunt Erin. We are very thankful for them.
Please pray that Kody's surgery goes smoothly with no problems and not to much blood loss. I know that God has gotten us through so much already and that he is right here with us. Sometimes I can just feel the peace and I know he is embracing Kody ALL the time and that is why Kody is so happy. Pray for a semi-pain-free recovery or as pain free as it can be for Kody.
Thank you to everyone that says a prayer for Kody even if it is just a small one. Thank you to everyone that has thought of Kody even if it was for a minute. We appreciate it all!

I will post after his surgery when I get a chance.
Randi

Tuesday, October 30, 2007 10:20 AM CDT

Hello!
We are back from Punta Cana and we all had a great time. No one got sick from the food or water thank goodness.
Kody goes to the neurologist today and we will find out exactly what she thinks about his 12 hour EEG.
We found out why Kody lost his molar...it was from tipping over in the school bus in his second accident. The dentist would not put a spacer in because Kody won't cooperate and it wouldn't do much good if he didn't. So we will just wait and see what happens with his teeth.

Kody's surgery was moved to Nov. 14. That is for the removal of the hardware in both hips. His ear has been running so this Friday he goes for his blood work and his pre-op visit and we will see if it is any better. The Dr. said if it doesn't clear up they will have to postpone his surgery. We also found out that he could have a substantial blood loss from the surgery so we need 2 units donated and none of us can do it because we were all just out of the country. We will be asking friends or other family members to donate for him. They said that the hardware is harder to get out since it has been in almost 2 years. We will find out more on Friday when he goes for his visit. It is supposed to only be an overnight stay but with Kody we never know.

I will try to post a couple pics from vacation. As usual, Thanks for you support and prayers. I don't know what we would do without them.

Randi

Thursday, September 27, 2007 11:47 AM CDT

Kody went for his 12 hour EEG yesterday and he was a very good boy except when they were putting on and taking off the leads. We won't know anything for at least 7 to 10 days. The techs did say that Kody had really good background which I am not sure exactly what that is but I know it is a good thing.

His removal of the hardware in his hips is scheduled for Nov. 15. If all goes as planned it is an overnight stay with about a 2 week recovery. It has been decided to wait for the pelvic surgery until Kody is around 8 so that he can be bigger and stronger. It is a really tough surgery.

Kody decided to continue being the puzzle that he is and he lost one of his molars that he is not supossed to lose until he is 12. It wasn't decayed or anything so we are not sure why he lost it. He now has to go to the dentist Oct. 12 and get some kind of spacer put in. We are going to have to address why he lost a perfectly healthy tooth in the first place.

On a more positive note, Kody has been trying to repeat EVERYTHING that we say. He has become really good at some words and his first really good words with 3 words together were said yesterday at his EEG when I tripped on something and said "What the Hell?" (bad grandma!). Of course me and Kim tried not to laugh but it was almost impossible. So the more we laughed the more he kept saying it. Then he was laughing at himself saying it. As he said it more and more it got clearer and clearer. Kind of hard to correct a child when your so happy to hear them talking! So hopefully he won't be kicked out of school today.....LOL.

All I can think of right now....so will update again soon!

Thanks for checking!

Monday, September 10, 2007 8:33 AM CDT

Hi,
Well summer is coming to a close and I wanted to give a short update. Kody and Kassi are back to school and they both really like it. Kassi is also playing soccer which she loves.

Kody is totally back to his happy self. He has a 12 hour EEG coming up on Sept. 27 so please say some prayers for a normal EEG for him or at least what is normal for him. He also has another ortho appt. coming up where we will find out about upcoming surgery for his hips. He is starting conductive Ed on Sept. 12 and we are hoping this will help him stand better and maybe lead to walking in the future.

He is in his new school and we feel he is very safe there and we trust them and feel comfortable with him being there. His bus situation is good right now.

Please say some prayers for Kody's friend Jake who had a right Hemisperectomy and is at home recovering. Pray for no seizures for him and a quick recovery.

I will update soon.
Thanks for visiting and please come back and check soon.

Randi

Updatge.....9/18/07
Kody had to be admitted to the hospital for an overnight stay due to constipation. He had to get an NG (tube down his nose and throat) to administer Golytley and an IV for fluids. He is home and feeling much better!

Sunday, August 5, 2007 10:49 AM CDT

Well Kody had his second (or should I say) third opinion and it is the same. Kody will need pelvic and hip surgery in the next 6 months or so and it will probably be in Nov. He will also get the hardware out of both hips. He did get new AFO's which come up higher on his leg and also a back brace which he hates. He just doesn't seem like he can stand up straight anymore. We are not sure if this is from one leg being shorter than the other or if the hardware is bothering him that is in his hips. We also are not sure if his one leg (left) is shorter because he needs surgery. He sure is our little puzzle but maybe someday we will get it all figured out. If not then we are ok with that. He is our little miracle puzzle.

Kody had yet another accident on his school bus. He fell over and hit his head again. I am not going to go into the whole story but I will say that it is getting harder and harder to trust the people that we hand him over to for care. It is a disgusting shame how some people choose to not be honest and caring. We will pray for these people because they really need it.

Kim thinks Kody might have had a seizure about 2 weeks ago. She is not sure and of course we want to think positive and hope and pray that it wasn't but we have to be realistic and realize that maybe it was. It was very very short. He had his EEG done and we have to wait about 2 weeks for the results. If it was a seizure we can only hope that it was brought on by one of the accidents and was only ONE!!!!!
As you all know he has been seizure free since surgery and med free for years. It would be such a shame to think that someones carelessness would result in something like this.

On a positive note, it has been in the 90's here and Kody and Kassi are LOVING their pool. Kody floats in a inter tube and he kicks both legs and he learned to keep himself upright in it. He just loves the water. He is starting to say more words without any prompting. He is so social and so happy all the time (unless we try to get him to stand).

I hope everyone is enjoying their summer!!
God Bless!!!!!!
Randi

Monday, July 9, 2007 9:21 AM CDT

I wanted to give a quick update. Kody had a second opinion about his pelvic bone and hips and the opinion is the same. He is going to have one more appt. with another ortho Dr. to concrete the decision to have the surgery but it looks like that is the best way to go. Kim and Chad are thinking about having it sooner than later which would probably be Nov. or Jan. Not in Dec. because of Christmas and their birthdays. After his ortho appt. I will update.

Also we all decided to have an EEG done on Kody. He hasn't had one in years and even though we see no signs of seizures we want to make sure that he isn't having any subclinical seizures that would be affecting his developement. I will also update on that. Please pray for NO seizures!!!!!

He is getting new AFO's, new hand brace and a back brace. We really want to concentrate on getting him at least standing and taking some steps. This is our ultimate goal. He is getting so heavy and hard to carry. Also very hard to get into the car. I wish there was a way to get him a handicap van. If anyone has any ideas please let us know. I am putting my thinking cap on for this.

Kody and Kassi got a swimming pool. It was a gift from me and thier pappy. I felt they should have some joy in the constant life of therapys, Dr. appt.'s and surgery's. They absolutely LOVE it and I have to say that I love it too.


I hope your enjoying your summer and God Bless!!!

Randi

Thursday, May 31, 2007 4:23 PM CDT

Kody has another ear infection, his ear was draining pus and blood and he was in alot of pain. He is on antibiotics and ear drops. He has another ear appt. on Tues. We almost went a whole year with no infection but just didn't make it. So his perforation can not be surgically closed for another year and that is only if he doesn't have any infections.

Kody also went back to the orthopedic Dr. and his collarbone is healing but is still very sore. He has to go back in 6 months and he will xray it again. His left hip is coming back out of place due to his pelvic bone shifting. He says it is from Kody having spasticity in his left leg (which his spasticity doesn't even seem that bad) and it will continue to get worse. We are really really upset about it. It means that Kody has to have hip surgery again. He will have to have a body cast on this time. It will stay on for 4 weeks and he has to pretty much do nothing for 6 weeks. We are probably going to have it done next May. He will also get his hardware removed from both hips. I look at Kody and it breaks my heart that he can't get a break. I wish I could take his pain instead of him!! Just to many surgerys for such a little guy to have. I am sorry to whine....I just can't help it sometimes.

Please say some prayers for the little guy!!

Randi

Monday, May 14, 2007 9:11 PM

UPDATE.....Kody's grandma passed away peacefully at home on Friday night May 18.
Please say a prayer for Kody's great grandma who suffered a massive hemorrhagic stroke yesterday on mothers day. She is not expected to make it and is home resting comfortably on hospice care. I will update soon. Thank-you.




Thursday, May 3, 2007 1:29 PM CDT

Hi,
Unfortunately I don't have all good news this time. Kody was at school in his pony walker and somehow he fell down 5 steps and fractured his collarbone. We are not sure exactly how it happened. So now he will be out of all PT, OT, and horseback riding for 4 weeks. All of his intensive therapy that he worked so hard for is going to regress. We are very sad, mad and dissapointed at school that this happened. He can not be picked up under his arms at all and that is difficult because he is heavy and it is very awkward. Kim is really struggling!

After going to the ER and being xrayed we took him to see his ortho Dr. the next day and had him rechecked just to make sure and verify the instructions. While we were there he checked his back xrays (we had him checked for scoliosis) and he does have mild scoliosis and he will be monitored for that. Also in his back xrays the Dr. noticed that his left hip appears to have dislocated again. He said maybe that it was the angle the film was taken in. WE CAN ONLY HOPE AND PRAY!!!

He didn't want to tramatize him today since he is so sore from the fracture so he has to go back in 4 weeks and have his collarbone and his hips xrayed. We will know more about his hips then.
Please say some prayers that Kody's collarbone heals quickly and his hip didn't dislocate.

Updated again on May 4...We found a soft mushy spot and a big bruise on Kody's head right next to his shunt tubing so last night we spent 7 hours at the ER getting a CT and a shunt series. Thankfully everything is fine..The Dr. said that apparently Kody hit something with his head but that everything on the inside is ok.




I will update soon.
Randi

Wednesday, April 25, 2007 7:25 PM CDT

Kody has and has had soooo many appointments lately! Kody went to the dermatologist and they are treating his keloids with a steroid cream for now. They also re-evaluated his linear nevus (his birthmark) and they felt that he does have epidermal nevus syndrome (or sebaceous nevus syndrome) which would link all of his problems together. They felt that he would benefit being seen by a geneticist.
So we went to a geneticist today. The geneticist also feels that Kody does have a syndrome. He has alot of the markers for it. He has the hip problems, the eye problems, the linear nevus, some bone problems and other problems that may or may not be connected. She wants him to go see a cranial facial Dr. for his jaw problem to monitor it and see if it continues to get worse. Also she wants him to see a urologist for another issue. Now we are wondering if the so called "scar tissue" behind his right eye is actually from the linear nevus. He has an eye appt. coming up anyway and we will bring that up. They would like to biopsy his skin and see if they can get any information from that. Sometimes the linear nevus (although rare) can turn malignant. We are opting to have his skin biopsied but not until he is having another surgery and at that time they will take a piece of his skin. He has the crainial facial, urologist and an eye appt. all in May. I will update when I know more.

Kassie is sick right now....she has strep again.

Thanks for checking and say a little prayer that some of Kody's appt.'s go well!

Randi

Tuesday, March 27, 2007 9:07 AM CDT

Hi,
Kody has been in the intensive strength therapy for 2 weeks now. This is his last week. It has been Monday thru Friday for 3 hours a day. He is doing quite well. He is gaining strength in his legs and his left arm. He goes from sit to stand holding on so much better now. He will walk with assistance but still needs alot of work on it. He has alot of balance problems which I suppose is common with hemiperisis, maybe the shunt...who knows? We will get the therapist reports this Friday on what they think. He was so well behaved during all his therapy and barely ever complained. He had to miss school for the 3 weeks but you have to weigh the good from the bad and it was well worth it. He totally cooperated with the therapists and followed all their instructions perfectly.

He went to the pediatrician for a well visit and he is in 50th percentile for height and 70th for weight. We are happy that he seems to be growing. He has to go to dermatologist again to get a check up on his linear nevus and also his scars from his hip surgery left keloids and the one is really bothering him, he always is scratching at it and making it bleed. He also will be going back to the eye Dr. soon.

Right now he has a cold but he is not complaining much but has a terrible cough. Hopefully it will run its course and just clear up on its own. He starts hippotherapy in April and we are so excited about that because Kody LOVES it!

Kassi is doing well and growing like a weed. I will try to post new pics one of these days....sorry a little behind here.

It is getting warm here and today it is going to be 76 so I hope your enjoying your weather whereever you are!

Thanks for checking up on Kody!!!!
Randi

Monday, February 5, 2007 8:34 PM CST

TAKE A MINUTE TO WATCH KODY LAUGHING..IT IS FUNNY!!!






Hi,
I have to apologize...this is so overdue! We are all going stir crazy right now. It is 20 below with the wind chill. Kody and Kassi have had no school for 2 days due to the cold weather.
Kody has been doing well, he had an optomology appt. last week and for the first time the Dr. tried to test his vision with what he could see. We taught him a couple signs that were on cards which they held up at a distance and he did pretty good with his left eye but his right eye doesn't seem to good. The Dr. is not sure if it is because of the scarring on his retina or if his brain became used to not using it because he chooses to use his left eye. So he has to be patched again for 3 hours a day (his left eye) to see if he will use his right eye more. He goes back in 3 months. He was really good for a change at the eye Dr. The good news is that Dr. Cheng doesn't feel that Kody is legally blind now that he can let us know somewhat what he can see. We are soooo happy about that!!!

He is going to be evaluated for therapy called Intensive Therapy (it is a pilot program and they are only taking 4 children to begin with) next week. Hopefully he is a good candidate. We are hoping that this will help get him up on his feet and some strength in his legs.

We are also waiting to hear if Kody will get a grant to get a handicapp ramp from his house. The house is totally not handicap accessible so pray that he can get this grant. It would really help make it easier to get him in and out of the house. With snow and bad weather it is really scary for Kim to carry him out and down all the steps to the school bus or to the car.







Well everyone.......STAY WARM!

Randi

Saturday, December 23, 2006 9:44 AM CST

We have not posted an update for awhile fortunately not to much has been going on. We are all very excited for Christmas and Kody actually loved Santa this year. He sat on Santas lap about 4 times. He went to the dentist yesterday and they said he most likely will have to have his jaw broken and reset when he is a teenager. For some reason his jaw is not alligned correctly. Also he is getting his 6 year molars and the top right is coming in straight into his baby tooth, they said we will keep an eye on it but they think he may have to have his baby tooth pulled to allow the molar to come in. Other than that the visit was good.

He will be going to the eye doctor in January for a follow up but we think his vision is pretty good right now.

He had a Christmas play at school and did a wonderful job as an elf, and his girlfriends from daycare were hugging and kissing him when he was done. We are considering changing schools for next year, it is a huge decision that we are struggling with but we are thinking of putting him in Childrens Institute. We have now realized that Kody is definately not ready for a "typical" school right now. We will keep you posted.

Have a wonderful Blessed Christmas!

Saturday, November 18, 2006 5:36 PM CST

Hi!
We are back from our Make a Wish trip and it was awesome!! Give Kids the World is absolutely amazing!!! You can't even imagine how great it was. We also went to every Disney Park and Kody and Kassi got to meet all of the characters and get pictures and autographs. Kody and Kassi loved flying for their first time.

I have been so busy but I will find time to post more pictures soon. Kody has another new baby boy cousin born November 10. Gavin Patrick was 7lbs. 10 oz. 20 1/2 inches. Born to Kody's Uncle Bobby and Aunt Erin. Now I have 4 grandsons and one granddaughter. Gavin was born while we were in Florida.

I promise I will post more when I get a chance very soon.

God Bless!
Randi

Sunday, October 1, 2006 8:13 AM CDT

PLEASE TAKE A MINUTE AND WATCH HOW HARD KODY IS WORKING AND HOW GOOD HE IS GETTING AT USING HIS WALKER!!!




Hi,
Things are going pretty good around here. Kody is used to school and he is back in the swing of it and he really likes it. He got a new motorized wheelchair and will be learning how to use it. He is so funny in it. He is kind of catching on how to steer it.

Kody has a new cousin named Austin. He was born on Sept. 11 and is doing well. Kody is a little weird around him if he cries. He gets a little scared but he is warming up to him. We had him sitting next to him and he was patting his head and then patting his own head. It was so cute!

Kassi LOVES school and doesn't even cry when Kim drops her off now. She is doing GREAT in school!

We are still concentrating on walking and talking. Still focusing on all the positives and not the negatives. Kody is learning how to use a communication device and learning more signs. He needs new AFO's (HORRAY!!! That means his feet grew).

We are counting down the days to Disney World. November 6-12. Make a Wish is making a trip of a lifetime possible for Kody!!! We will take lots of pictures and share them.

And I just want to share my feelings about something. There are so many good kind people in this world. People we have never met and will never meet in our lifetime. They take the time to say a few kind words, a simple touch or a gesture they don't even know that they did. That is what keeps my faith alive. It warms my soul and keeps us going when things get so hard that you don't think you can keep going. I know that it is God working through his children. So when you show any kind of kindness to someone you may never know that when they are going through a tough time or laying in bed at night thinking and feeling scared or anxious they may think of you and feel a sense of peace because of what you did that you may not even know meant so much to them. I am not a very good writer but I hope I got my point across.

May God Bless!!!!

Randi

Thursday, August 31, 2006 8:45 PM CDT

Hi,
Kody went back to school on Monday and it was heartbreaking the first day, Kody got the saddest face and started sobbing. His tears were just falling. He was scared and didn't want to leave Mommy. Kim called school later that day and he was settling in. He is doing fine now. He is getting used to being back but very tired when he comes home.

He is still horseback riding every Thursday until the end of Oct. He is so proud and sits up so straight on his horse (Spanky). It is one of the most important things to him and motivates him more than anything.

He went to the eye Dr. for a check-up after his surgery and the Dr. says his eyes are looking pretty good right now. He goes back in 3 months. He went to the dermatologist and he is trying retin-A on parts of his birthmarks to see if we can keep them from darkening and thickening. He goes back in Nov. to him.

Not much going on with walking or standing but we have learned how to let Kody be Kody and do it in his own time. He has learned about 50 signs and learns new things every day and we are so thankful for what he CAN do and try not to focus on what he isn't doing yet.

Kassi starts preschool on Sept. 11. She is looking forward to it and she is also going to go to dance school. Things are pretty uneventful right now which is good. No new cousin's yet. Aunt Nicki's is due Sept. 18 and Aunt Erin's is due Nov. 22. We are waiting patiently.

Thanks for reading!
Randi

Monday, August 7, 2006 2:49 PM CDT

Hi,
Kody went to the endocronologist and they decided even though he hasn't grown as much as he should and he is dropping on the charts to wait until next year. They want him to grow 2 inches in one year. If he does not then they will do more aggressive testing on him at that time. So hopefully he will grow.



Kody is still in love with horses and we actually found some to buy him.(toy ones of course) We found a couple at the dollar store and his great Aunt bought him a really big toy one and it is so funny, he just won't put them down. I have never seen him like something so much.

Hope everyone is enjoying their summer!

Randi

Saturday, July 15, 2006

Hi,
We are having a good summer. Kassi is taking going to a cheerleading, gymnastics camp for a couple hours a day starting next week for 2 weeks. She really likes it.

Kody has an appt. with a endocronologist on July 27. We just feel we would rather he be evaluated and have a specialist determine his growth and keep an eye on him. We looked at his records and he definately has not grown very much at all in 2 years. I will post after we go.

As you see on the ticker I put on here our Disney trip is being organized!!!! We are going Nov. 5- Nov. 12. Kody and Kassi are sooooooooooooo excited.

Kody is crazy about his horse "Spanky". I have never seen him so motivated about anything like he is with his hippotherapy. He goes crazy when he knows we are getting close when we drive up. He even knows when Thursday comes. If he even sees horses on TV he goes crazy and starts signing for horse. I love to see him so happy and motivated. He sits up so straight on his horse and rides like he is king of the world.

Thanks for reading and hope your enjoying the "heat".......Whew is it hot. Not complaining...glad it is not snowing.
Randi



Wednesday, June 21, 2006 4:28 PM CDT
Hi,
Kody went to the eye Dr. for his post surgery check-up and Dr. Cheng was very pleased with the surgery. He said that Kody's eye looks GREAT!! We are hoping that Kody does not have to have any more eye surgery.

Kody has been going for his hippotherapy (horseback riding) and he still LOVES it!!!!!! It is so good for him.

He has also been bearing a little weight on his legs again lately. He is also starting to take steps with assistance. This is the best he has ever done. I feel that if we can strenghten his legs and get him to stand up straighter (he leans forward for some reason) that we can get him to walk. I think his hips are finally feeling better.

He has also been more verbal lately. He actually is saying some words purposefully.

Kody went to his pediatrician for his pre-op for his eye surgery and of course he was weighed and measured. The ped looked up his records and he hasn't really grown for about a year. When he was 2 he was in the 100th percentile for height, then when he was 3 he was in the 80th and now he has dropped to the 20th percentile. So he had to have a test called a bone age test and it came back that his bones are age appropriate. That is great! However they are concerned that his growth hormones in his body may not be producing enough. So he has to be checked in 6 months to see if he grew at all and how much. Even an inch would be good. If he doesn't grow then he would have to see an endocronologist (sp?). So of course we say GROW KODY GROW!!!!!!
Hope your having a great summer!
Randi

Here is a short clip of Kassi at gymnastics.

Saturday, June 3, 2006 12:59 AM CDT

Hello,
Kody went to see a world renown CVI (cortical vision impairment...your brain does not process what your eyes see) this week. When he was 9 months old he saw her and she felt that he did have CVI. This time she saw him she was amazed how far he has come. Dr. Roman feels that his CVI has almost completely resolved itself!!!! YIPPEEE!!! His vision problems are from the anatomy of his eyes. Her husband was also there, he is a neonatologist at the hospital where Kody was born. (That is also where his wife Dr. Chris Roman sees children once a month). Her husband said that he has only had one other child born there with HME in his 28 years on staff and that child passed away. He was also amazed at Kody.
She tested Kody on cognitive skills and she feels that Kody is extremely close to being age appropriate!!! What Good news that is!!!!!!!! He only says a couple words now but he knows alot of signs (which he uses some in his own way that we understand) and he almost ALWAYS gets his point accross. We walked out of there on cloud nine! He doesn't have to go back to her at all.

Kody and Kassi went to the dentist yesterday and they both got a clean bill of health on their teeth. Kody couldn't get his cleaned because we didn't realize that since he had hip surgery 5 months ago that he would need a antibiotic before they would clean his teeth. But they said his teeth look great. His jaw at this time is growing in a way that is correcting his overbite. That means that if it continues to grow that way (and it may or may not) he might not have to have corrective surgery on it when he is older.
Both of them were SCREAMING by the time we left. I was never so happy to leave somewhere!!!

Kody is having strabismus surgery on his right eye Wednesday. Say a few prayers that everything goes smoothly and uneventful. He already had his right eye done once but this time it is different muscles. Hopefully this will help his eyes work together more successfully.

His botox is working well...his hand and arm are very loose and he is getting extensive therapy.

The school year is coming to a close and Kody will miss his teachers and therapists at school. They are so great!

Hope your enjoying the beginning of summer! God Bless you!
Randi
(Kody's grandma)

Monday, May 22, 2006 8:03 PM CDT

Hi,
Kody is doing much better and back to his happy smiling self. His Mom, Dad, Kassandra, Uncle Bob, Aunt Erin and cousin Brady went to Kennywood Park yesterday (that is a local amusement park). Kody LOVED riding the rides that he could go on. This was the first time he actually rode any rides. He had a blast! We are excited because this means that when we go to Disney World he will be able to ride and enjoy riding there! (for those of you that don't know, Kody is going with Make a Wish to Disney in November)

Kody got botox last Thursday and it went ok. He got anesthetic and this time wasn't as bad as last time. He didn't scream quite as much and settled down quicker. He got 20 shots this time...all on his arm, hand and upper arm. It takes about 2 weeks to kick in completely. I think it will work very well since it worked so well last time. Kody learned about 5 new signs and is even saying a couple words like mama, dada, pappap, bye bye, Hi and of course Grandma but only I can understand that one.

He still doesn't tolerate standing up to well. Hopefully as his hips heal and his ankle gets stronger we can make that happen.

We are so blessed by God for all we have and how close our family is. Kody is one of the greatest gifts that God could have given me. I thank him for that every day!


Randi

Monday, May 8, 2006 11:38 AM CDT

Kody is feeling a little bit better. He still trys to roll into a ball when you pick him up and he is still in pain certain ways that he moves but in general feeling a bit better. We have had to cancel therapy for 2 weeks and also his hippotherapy that he love so much. We are going to take him to hippotherapy this Thursday and see if he can tolerate it.

He went to the orthopedic Dr. and he took more xrays of his hips and said that he feels confident his hips are still healing and look good. He did say that Kody seems in pain in certain positions. He xrayed his left foot and found a questionable spot on the bone going from his little toe up his foot. He said that it could be a stress fracture and to bring him back and he will re-xray it if he doesn't feel better in about a week and a half. If that isn't it then he will investigate further with MRI's. We hope that it resolves on its own. The director was called and she said that she is sorry and wants posted about how Kody feels. I just hope that the PT that did this to him is reprimanded so she can't do this to another child.

Kody is going to have his botox on May 18th and eye surgery on June 7th. He is back to being his happy self and we are thankful for that!!!! Kody is so interactive lately and such a joy. He says bye-bye and Hi now and some other words to. He is also learning new signs.

He is going to be the featured child of the week on Hugs and Hope, come check it out.....

www.hugsandhope.org

Randi






Saturday April 29,2006

Hi, Kody went for therapy on Wenesday to an outside of school therapy (this was only his second time) and his PT put him in a stander. You have to understand that this therapist doesn't know Kody very well. She decided that she would put him in for 30 minutes and evidently he was in a position that wasn't very good for him. He was crying at the end and apparently her way of doing things is that the child doesn't get out until they quit crying. Well Kody must have been in pain and now something is really wrong with his left leg. Since he is non verbal he can't tell us what is wrong but he can't move certain ways or he screams. We can't pick him up without him crunching into a ball. I have to say that I am furious!!!!! You trust the therapist to do the best for the child and I know she didnt' do it deliberately but I don't feel she should have pushed him that hard without knowing him since he can't speak for himself and tell her that she was hurting him. We definately are going to tell the establishment about this but really the end result is that Kody suffers.

Even school called Kody's mom the next day and said something was wrong with Kody's leg. Then me and his Pappap took him to his horseback riding (and he was SOOOO excited to be there) but as soon as they put him on the horse, you could tell he was in extreme pain so we took him off. We then took him to the ER where we spent 5 hours getting xrays. The ortho on call at first felt that Kody may have a fracture in his hip but considering that he had hip surgery 3 months ago it may be that it is showing up to look like a fracture. So we are taking the xrays from the ER to the ortho that did the surgery on Tuesday to compare the 2 xrays. That will tell us if there is any problem with his hip. We are hoping that it is just a pulled muscle that will heel. It is a very dissapointing unnecessary set back for Kody. I will post when we find out more.
Thanks for checking up on Kody!!!
God Bless, Randi

Saturday, April 29, 2006 11:38 AM CDT

Tuesday April 24,2006

Hi, Just a quick update....Kody LOVED horseback riding! He loved wearing a helmet (no, it doesn't take much to make him happy) and he loved riding. He will go every Thursday.

He went to the eye Doctor and he does need eye surgery on his right eye. He will have 2 muscles cut this time. He did already have surgery on this eye but this is 2 different muscles this time. Dr. Chang isn't as confident this time that it will work, but he says it has an 80 percent chance of working. There is a chance that he may need surgery on the left eye also. I will update when we get a date on it. Wouldn't it be nice to have him be able to get his botox and his eye surgery on the same day. Then he would only need anesthectic once. We are going to try but Dr. Chang said he doubts it.

And last but not least Kody's daddy was in a 4 car accident today and thank God that he is alright but his brand new car with only 750 miles on it has $6200.00 worth of damage on it. We remember it is only a car but it is still upsetting. Thanks for checking up on us..and God Bless!!!!
Randi

Thursday, April 20, 2006 11:11 AM CDT

Hi,
We are excited.....today Kody is starting Hippotherapy (which is theraputic horseback riding). I am not sure if Kody will like it or not but we are hoping he does. It will be really good for him especially since he doesn't like to spread his legs to well since his hip surgery. I will update how he liked it.

He is having botox again which means he will be put under anesthetic again on May 19. His therapist said his arm and hand are way to stiff and he needs the botox really really bad. He does "sigh" have yet another ear infection so he is on an antibiotic to clear it up before his botox.

He has an eye Dr. appt. on Monday morning and we will find out if he has to have eye surgery again. He also has an ortho appt. on Tuesday to see how his hips are doing. He is doing better cognitively, he is back to himself but physically seems like it is going to be a long long road. But we are hopeful that Kody will walk someday.

Thanks for checking up our Kody!!! We are so happy to have so many people to care and pray for him.
Randi

Saturday, April 1, 2006 7:54 AM CST

Happy April Fools day!
I think Spring is finally here. The sun has the ability to put you in such a good mood!


Kassi is doing really well. She learned how to shoot basketballs and she is pretty good at it. She is also learning to hit a softball and she is good at that too! She is so proud of herself. She loves the special time with Daddy while they play.

Kody is also doing pretty well. He went to the audiologist yesterday and had his hearing test. He can hear perfect out of his left ear and that is really good news! His right ear couldn't be tested like it should because of the perforation. The test wouldn't work properly. They are sure he has some deficit in that ear but just not sure how much. We can hope and pray that when the ENT decides to close it up (probably not for a year) that his hearing comes back. But the Audiologist did say that Kody has totally compensated for the deficit.
He is scooting better but still isn't to happy about bearing any weight on his left leg. He is going to be getting ALOT of therapy in the next couple months. He is also starting Hippotherapy (horseback riding) to help him.

He is doing good in school too. While he is at school, they do things around once a week with the typical children that are there for daycare. We found out that Kody has 2 girlfriends that fight over him. They both want to sit next to him and help him. You just can't imagine how nice that makes us all feel. One of Kody's therapists at school told us that Kody is just the happiest and sweetest child that she has ever met. She summed it up by saying that Kody just has a "sweet and good soul". That almost brought tears to my eyes because it is so true. For a little boy to have been put through so much and hardly ever complain and always just keep on smiling!!! He can teach us all so very much in life. It makes us feel so good that EVERYONE that meets Kody loves him. He touches so many people in his life. When people say "I don't know how you do it" to any of us we want to respond and say that we were so blessed with Kody and are so thankful to God for giving us the opportunity to have him in our lives and teach us so much. He has brought our family so close together and I couldn't ever have experienced such Love and a feeling of contentment in my life without Kody.

I want to thank-you from the bottom of my heart for coming to this site and checking up on Kody. I may not even know you but it means alot to all of us that so many care for out family and that we have so many prayers going on for our precious Kody. I know God hears ALL of you!

Randi
(Kody's grandma)

because I witness one everyday....KODY

Monday, March 13, 2006 6:49 PM CST

Wow where does the time go...sorry so long in updating.
Kassi is feeling better now. Pneumonia is all gone and she is back to normal.
Kody is little by little acting a little better. He is still so stiff and he absolutely will not bear any weight at all on his left leg. We are not sure if it is because of his hips or because of the heel cord lengthening. Since he is non verbal it makes it pretty tough to tell what is bothering him.

He went to the neuro and got a good report. She thought that he looked excellent and that cognitively he is doing very well. Socially he is doing excellent! She doesn't want to see him for 8 months.

He also went to the ENT Dr. and when the Dr.s come in and look in his ear and say WOW, you know something isn't good. His perforation is HUGE again. Dr. wants to let it go untill Kody goes for 4 seasons with no ear infections. The perforation is acting like a tube right now so it is a double edged sword because it is kind of good that he has it but it is abnormal to be there. It is most likely affecting his hearing by 50% while it is there. He is going to have an extensive hearing test at the end of the month. He hasn't had one since he was about one. It is one of those things that he needs to have but we are not sure we really want to know what they have to say. We just pray that Kody's hearing has only been affected by the perforation (and that is suppossedly corrected when the perforation is closed) and that we don't learn anything unexpected. As far as we can tell his hearing seems pretty good. Hard to believe with the 40 ear infections that he has had.

I promise I will try to update sooner next time.
Thanks for checking up on Kody!
Randi

Wenesday, March 1, 2006

Kassandra has not been feeling well, not eating or drinking and running a fever. She went to the Doctor today and she has pneumonia. She was put on a antibiotic and albuterol. Hopefully she will feel better soon. She is not herself at all!
Kody seems healthy right now and he is scooting more and more every day. He is just his happy self. He goes to the neurologist tomorrow for his yearly checkup.





Sunday, February 26, 2006 8:08 AM CST

Hi,
Kody got his cast off! His leg is peeling skin pretty bad from having it on and his leg seems very sensitive. He really won't scoot and is not himself at all. We are not sure if his hips are hurting him or if it is his leg or what is going on. Maybe it is normal for him to not want to do anything. I quess we thought that he would get the cast off and he would be back to normal. He is just so "guarded" when we touch him or pick him up.

His attention span doesn't seem as good as it used to be either. Hopefully in time we will get our old Kody back. On a positive note he is back in school and allowed to resume his normal activities. He got a real shower (he loves to sit in the shower with the water running) and he LOVED it. His ear quit running and he goes to the ear Dr. to see what they want to do in March and he also has an eye appt. He goes back to the orthopedic Dr. in 3 months.

Weather is freezing here....we are ready for summer!!

Randi

Wednesday, February 15, 2006 8:05 AM CST

Kody went to the ENT on Monday and his regular ENT Dr. is on vacation so this one took the wic out and suctioned his ear out really well. They had to hold him down because he hates it so much (and be careful because of his hips) so they broke blood vessels in his face from holding him down so tight. The bad news is that his ear drum did rupture again. We have to take him back in 3 weeks to get a check-up and see if infection is gone and also to see what he wants to do with the perforation in his ear. It is extremely large. We know it has to be surgically closed, it is just a question of when. His ear is still running extremely bad so Kim called the office to see if this is normal since he got it suctioned and has been on a antibiotic for 6 days already. Kody's bus driver said he has never seen anything like that. It runs so bad!
He goes to the eye Dr. next month to see about eye surgery also. And we know he needs a surgery to remove the hardware in his hips but that isn't for 1-3 years.

Kody gets his cast off next Tuesday. He is doing well as far as no pain and becoming less stiff when you try to pick him up. He tries to scoot a little bit but it is really hard for him with that cast on. He is back in his regular fireman bed (hospital bed is gone....YEA!) and sleeping well. God Bless everyone and I will update soon!

Randi

Sunday, February 12, 2006 8:40 AM CST

Kody is doing well with his hip but very very nervous when we have to pick him up or move him. He is extrememly hard to carry because he won't bend or put his legs around us. I am sure in time he will. Well Kody's ear drum has ruptured again. We were so hopeful that is was healing (he hasn't had an ear infection for 7 months). But unfortunately he got a bad one.

We had to go to the ER and they put a wick in it and put him on oral antibiotics and also antibiotic drops.They also did cultures on it. He has to go tomorrow to ENT and get the wick out and find out what kind of infection it is. Kody has really good hearing as far as we know and we would like to keep it that way! We counted how many surgerys Kody has had so far and he had 7. For a little 4 year old that is alot of surgerys. And we know that he is looking at at least 2 more. Please say a prayer that his ear isn't to bad.

Thanks for checking!
Randi
>

Wenesday, February 8, 2006 7:00 PM CST

Hello again,
We went to the ortho today and Kody got his xrays and he said that Kody is healing very very well. YEA!!!!!! We are aloud to take off that abductor (ugly big blue thing) and he only has to wear it at night or if he is laying in bed. (which is only at night). When me and Kim saw the xrays we were in awe! The metal that they put in there is HUGE. It is about 4 inches long and about 1 inch thick. It looks like a bracket to hang a curtain. We could see the screws that are going through his bone. There are 3 of them and we could see the threads on them. His incisions look great too! He is not aloud to bear any weight yet on his legs and of course we can't pull or push on his legs. He goes back in 2 weeks to get his cast off and get xrayed again.

He hasn't had that abductor off for 1 month and it was really weird for him and us. We could tell he was really really nervous. Then we went to his school for a meeting and HE IS GOING BACK TO SCHOOL TOMORROW!!! His teachers were so happy to see him at the meeting. They said that he made the speediest recovery they have ever seen.

We took him home and I put him on the floor and believe it or not he was trying to scoot. He is such a trooper, I just can't believe it. He couldn't really scoot to well (he only moved inches) because of the cast and I am sure he has to get used to using all his muscles again.
Then he got a shower with a bag on his cast and he loved it! So it was a really good day for all of us. Thanking God for that!

Ear still running. Will update soon. Thanks for checking on Mr. Smiley!
Randi

Monday, February 6, 2006 2:30

Kody has his ortho Dr. apt. tomorrow. We are really hoping when they take the x-rays that it shows he is almost healed and he can take that big old sponge thing off his legs. At least some of the time so he can maybe get a bath if we put a bag on his cast. Of course he loves showers so maybe he can get a shower. His incision looks pretty good to us. His visiting nurse measured it and it is 4 1/2 inches on each side. Pretty big for his little thighs.
Unfortunately he woke up today and his right ear is running really really bad. It has been months since he has had an ear infection. In case you don't remember, he had a really big perforation in his right ear that was surgically going to need closed but last time he went it was starting to heal. The Dr. told us if he got a bad infection that it could blow the hole out again. Hopefully it didn't. Kim called the Dr. and they started him on medication and we have to see if it is still draining on Wenesday and if so....it is back to another Dr. He is due for a checkup with the ENT Dr. anyway.

I will post tomorrow after appt.

GO STEELERS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
SUPERBOWL CHAMPS!!!!!!!!!!!!!!!!!

Sunday, January 22, 2006 7:55 PM CST

Hi,
Kody is doing really well! He isn't complaining about not being able to move. He is totally back to his smiling self! He is down to taking his pain meds only at night. He is such a trooper because the Dr. thought he would need the pain meds around 3 times a day. He is very very constipated but we are trying to give him miralax and hoping that it works.
He doesn't like being picked up but I still think he thinks that people are going to hurt him when they pick him up. He watched the Steeler game today and if you watched it you will know that it was a very HAPPY day for all of us Pittsburghers. His daddy and mommy sure were happy.
Kassi has been going to school as much as possible (there has been a couple days when we just couldn't get her there) but we are trying to keep her as close to her schedule as possible. Kody has had lots of company . We especially want to say how much we appreciate Aunt Nicki, Uncle Twig, Uncle Bobby and Aunt Erin for how much they do!

Kody's Dr. appt. is Feb. 7. and I will update after that if not before that.

Thanks for checking on us!!!!

Randi

Sunday, January 15, 2006 6:45 PM CST

WE ARE HOME!!!!!
We came home today. Kody got to ride home in an ambulance...woo woo. We got home in time to watch the Steeler game and what a game it was! We propped Kody up on the couch to watch with everyone. The Cardiologist checked out Kody's heart thoroughly (he had an ekg and she checked all his tapes) and she feels confident that his heart is good. THANKING GOD!!!!! The Doctors feel that because Kody's blood count went so low that it affected his heart beat and it just took long to stop beating so fast. His rate is still a little high but he will have a nurse come this week and check on it.

He somehow from the tape got 3 really big water blisters on his thigh and that is hurting him too. The ortho said he looks really good and he keeps assuring us that Kody is not a china doll even though we are having trouble remembering that when he is screaming when we try to move him or change his diaper. He goes for a follow up in 3 weeks.
I am going to post some pics of when he was in the hospital sometime this week.
I really want to thank everyone for all your support!!!

God is good!!!!

Love, Randi

Friday, January 13, 2006 2:50 pm.

I am at the hospital library so I am taking a minute to update. Kody had to get a blood transfusion last night. His blood count went to low. His heart rate is still a concern too. They did an ekg but feel that it looks ok. They thought it may be the low blood count but apparently not since it is still going up and down all the way up beyond 200. They are now checking his thyroid (I suppose that that can cause your heartrate to do this)
They are decreasing the epideral meds and his valium. When I just left the room they were sending the IV team in to get blood and he is really miserable and in pain right now. I picked a good time to leave.....Mommy and Daddy are with him. We are all tired and stressed. Ready to go home. If they can solve the mystery of his heart then we can probably go home Sunday. I feel everyones prayers.....I feel Gods presence so I know we will get through this. THANKS FOR ALL YOUR SUPPORT!!!!!!!
Love, Randi

Thursday, January 12, 2006 10:20 AM CST

Hi Everyone,
Kody's surgery went as planned. He got both hips done and the heel cord lengthening. The Doctor said that it went well. The Dr. decided not to do the botox in his hand and arm because he can't get therapy for at least a month so it would be useless. Kody lost alot of blood but not enough for a transfusion and they are keeping an eye on that. They will check his levels today.His heart rate was going up rather high but they are also keeping an eye on that. He had a very rough time early last night, he started getting muscle spasms that some others whose children has had them warned us about, but I didn't realize they would be so painful to him. He has an epidural in place (in his spine administering anesthetic so he can't really feel below his waist) and they are now giving him valium for the spasms. He seem to be pretty comfortable as long as you don't touch him.

He actually ate a little french toast this morning...kind of hard to eat laying down. They are going to take the epidural out by Sat. and see how well they can manage his pain with oral meds. If his pain can be managed well with oral meds he may be able to come home on Sunday if all goes well. We will see. All of your prayers worked and are working!!!!!!! We appreciate so much care and concern from everyone. Kody even gave me a little smile this morning.
I am sorry I can't send personal emails but I am exhausted...they put another child in Kody's room last night at 12:00 at night and it was a 4 week old baby and the parents didn't stay with the baby so the poor baby cried a good bit. Sad. Kody couldn't rest very comfortably either, with the baby crying. I am getting some rest now and going back up this eve. and staying the night.
Love, Randi

Tuesday January 10, 2006 8:10

Hi,
Well tomorrow is the big day. We are nervous and just want to get it over with. We found out that we don't have to be there until 10:30 and I quess thats good except that Kody can't eat or drink at all. Also when they called Kim they said what they are doing to his hips, the botox (with casting and he isn't suppossed to be getting casted for that) and POSSIBLE heel cord lengthening. We don't know what they mean possible. We understood they were doing that for sure. I don't know if they are only doing it if his hip surgery goes really smoothly or what. We will definately be asking that when we get there. I will try to post tomorrow but I am not sure I will. I will try as soon as I can. Say a prayer all goes well. God will look over our little guy!

Randi




Friday, January 6,2006
Hi Everyone,
We are trying to get everything organized for Kody's surgery. Kody's Pappap gave blood so in case Kody needs a transfusion it will be on hand. We are trying to make arrangements so that Kassi isn't taken completely out of her routine. She knows somewhat of what is going on....she seems to be very nervous and keeps patting Kody's head and rubbing his back alot. She says she doesn't want the Dr's to hurt Kody. I think that this is going to be very hard on her because she doesn't understand it completely.

She is going to stay overnight at her Aunt Nicki's Tuesday night and then I (Randi, Kody's grandma) am going to stay overnight at the hospital while he is in so that Kim and Chad (Kody's mommy and daddy) can be home everynight with Kassi. Then they can come up everyday. Hopefully Kody's surgery will go very smoothly and he can come home by Monday. I am not sure what time on Wenesday we have to be there, they will call the night before. We are all kind of scared, nervous, apprehensive and so on and so on....but God will be with us and take care of Kody.

Please say a little prayer for Kody on Jan. 11 and I will try to post as soon as I can to update.
By the way....for those of you that were wondering (thank-you for thinking of me) my shoulder is feeling a little better. I have another appt. in Feb.

Thanks for checking and I will update as soon as I can.
Kody's other grandma and pappap (Chris and Tony) are helping out to and I want to say THANK-YOU!!!! Your support means alot!
Randi

Thursday, December 22, 2005 8:05 AM CST

I can't believe it is only 4 days till Christmas. I want to wish everyone a very Merry Christmas. It is a time to be thankful for all we have, especially family and God in our lives. If everyone would say a prayer for all the sick children that would be the best present anyone could give to anyone else. And to remember all the angels that are no longer here with us that are missed so much by their loved ones.

We are all doing well, we have had some difficulties this week with other family members and unexpected illnesses but we are getting through it. Kody had his pre-op Doctor visit (I know it seems a little early but they said we can get it up to a month before) and he is healthy and ready for his surgery. We are trying not to think about his upcoming surgery but it hard to put out of our minds. It really hurts my heart to know how hard this is going to be on Kody and he is just so sweet and of course you try to protect your loved ones from any pain and we can't do that for him this time.

I want to THANK everyone for ALL of the birthday and Christmas cards for Kody and Kassi. And also for all the gifts they have received. We have saved them all and you should see how many he has. When I get a chance I will take a picture with all his cards around him and share it on his website. Thank-you so much to Hugs and Hope, Tumbleweed Foundation, Bridge of Dreams and Make-a-wish. ( I hope I didn't leave anyone out) Kody has some special angels that always remember him too. Thank-you for making their Christmas and Birthday special!

Much Love to everyone for Christmas and I hope you all have a wonderful New Year!!!

Randi

Wednesday, December 7, 2005 1:53 PM CST

Hello,
Things are going pretty well. Kassandra has been behaving exceptionally well lately. She seems so grown up anymore. She hasn't been having temper tantrums hardly at all. We love it!!! She is getting over a sinus infection and has been on an antibiotic for 2 weeks.
Kody has a bad cough. We took him to the pediatrician today because we were concerned that maybe he had an ear infection but all is well. The Doctor said he must have a viral infection and to try to wait it out. We were concerned because of his surgery coming up on Jan. 11 and of course don't want him sick so that he can't get it.

Kody also went to the eye Dr. today. He is still not using his right eye the way that he should. We have to increase the patching to 5 hours a day now. We asked the Dr. what to do when Kody has his surgery and he said just to do the best we could. We feel bad to patch him after surgery when all he will be able to do is to watch tv and lay there. His eye Dr. said that most likely Kody is going to need another eye surgery on the right eye. (He had surgery on that eye already but now it is different muscles that need corrected). I know someday hopefully all these surgerys will be behind us!!!!!!

I still thank God for all we have and put all my faith in him.

(I am going for therapy on my shoulder and have an ortho appt. on Dec. 22....)

Thanks for checking up on us,
Randi (Kody's grandma)

Tuesday, November 29, 2005 8:06 AM CST

Hello,
Everything has been going pretty well. We all had a very nice Thanksgiving with immediate family. We have so much to be thankful for! With everything that goes on we know that God is good. He let us keep Kody here with us to cherish and take the best care of that we can. We are very thankful for that!

Kassi was very sick recently. We thought it was her asthma but Kim took her to the Dr. and it was an extremely bad sinus infection. The Dr. said that she was filled with pus. She is on the road to recovery. She actually has been behaving much better lately.

I know this webpage is not about me but I just ask for some prayers for myself. I somehow hurt my shoulder about 3 weeks ago and I just got results back from an MRI and I have a pinched nerve and also I tore a tendon. I am in alot of pain and can't use my right arm very much at all. I can't pick up Kody. I am going to start PT tomorrow and I have an ortho appt. on Dec. 22. Please pray that this PT works and I don't need surgery. All I can think about is that Kody is having his surgery on Jan. 11 and I am the one that sleeps at the hospital with him and I need to be somewhat better for his surgery. His recovery is going to be long and I need to be there 100 percent for him and his family.

Thank-you and God Bless!
Randi (Kody's grandma)

Sunday, November 13, 2005 9:00

Sorry it has been so long since the last update. We have been very busy since Kody's great grandma is moving and we are helping with that.
Things have been about the same around here. We are trying to plan for Kody's hip and ankle surgery. We want to make sure he gets a visiting nurse to change his incision dressing daily and to make sure he is comfortable when he comes home. We are also getting him a hospital bed for when he comes home. It is a good thing to know so early that he is having surgery so we can plan but it also gives you lots of time to stress and worry about it. Please pray that Kody doesn't have unbearable pain after his surgery. Please pray that we can keep him comfortable and semi happy.

Kassandra has been having some anger problems so she is going to see a Dr. at the end of Dec. I am sure that it has to do with the fact that Kody gets so much attention and needs so much care. Also please pray that we can help her work through this.

I will update again soon.....Great grandma is moving today so I am off to help.

Randi




Hi,
Sorry its been awhile since I updated but have been very busy lately. Kody has been doing very well with the botox. He gets OT 2x a week above what he gets in school. His hand and arm are so loose. His shoulder is still kind of tight. His therapist thinks he is doing great and he is so proud of Kody for trying so hard and not complaining. He actually tries to use his arm and can move it to midline on command.
His surgery has been scheduled for January 11. He will get both hips done, his heel cord lengthening (with a cast for 6 weeks) and another round of botox all at the same time. We are very anxious about the surgery but we know that he needs it all. I just look at that precious little face of his and he smiles at me and I want to protect him from all of this pain. But I know I can't.I know that God will watch over him through all of it. He always has!
He has the best Mommy, Daddy and sister who would make anyone proud. I want everyone to know that his mommy does the best job with him and sacrifices her own needs for him and she makes me proud to say that she is my daughter!

Thanks for reading and being a part of Kody's life.

Randi (Kody's grandma)

Friday, September 23, 2005 2:53 PM CDT

Hi, Kody has his botox. We had to be there at 6 and we were done around 11. He woke up from his anesthetic and wouldn't quit screaming and thrashing for about an hour. The nurse told us that some people react to certain anesthetic like that even though he never did before. He is doing much better now.
He got botox in his pectoral muscle, bicep, thumb abductor and finger abducter, about 16 shots in total. He is going to start extensive therapy on Monday.

He couldn't get the botox in his leg or ankle. It didn't have the range of motion that he needed so "sigh" he has to have the heel cord lenghtening done. I think he is going to get it the same time as his hips are done. We are pretty disappointed but everything happens for a reason.

So now we stretch stretch stretch those muscles!!!!!

Will update soon.



Wednesday, September 21, 2005

Hello,
Well Kody went to the spasticity clinic today and he is going to get his botox on Friday. He will be sedated and get botox in his arm (all the Doctors were in agreement that this should help his range of motion). His calf and ankle are questionable. His foot has to have at least 30 percent range of motion and most of the Drs. agreed that it does but his Orthopedic Dr. didn't. So what they are going to do is while he is sedated they will try to move it and if the range of motion is at least 30 percent they will do the botox and then he will get a serial cast on for a couple weeks. If they can not do the botox then he will have to have something called Heel Cord lengthening done which is another surgery.

Kody's left hip is 40 percent out and all the Drs. are in agreement that it needs to be fixed. It was also discovered that his right hip is about 10 percent out. Typically if they do one leg, it leaves that leg much shorter which causes balance problems. Since Kody's right hip is also a problem they decided to do both at once. By doing both at once it will make his legs the same length. Kim is trying to set up the surgery for Jan. (she wanted to wait till after x-mas) The surgery is very painful but we know that Kody has to have it done. They also are going to do the heel cord lengthening at the same time if it is necessary.

He was pretty happy today even though we were there for 6 hours. He was crying the last hour but it was a long day. Please pray that Kody can get the botox on his ankle on Friday instead of the heel cord lengthening. The head of neurosurgery seemed pretty amazed at how social and happy Kody is. Of course everyone fell in love with him. I will post hopefully on Friday or Sat. on how his botox went. The Dr. said the full effects are noticible about 2 weeks after the shots. Kody's spine is perfect and his right side tone is perfect.

Thanks for reading!

Randi

Tuesday, September 13, 2005 10:46 AM CDT

Hi,
Just a quick update to let everyone know everything is going well. Kassandra started school and screamed and wouldn't let Kim go the first day. Today (the 2cnd day) she actually seemed a little excited. She seems like she is going to like it. Who knows....she is unpredictable so tomorrow may be a screaming day. One day at a time.

Kody is still loving school. He gets to go swimming there and he loves that. We have had a little time in between appts. and it is nice! Next week is his evaluation for botox and 2cnd opinion on his hip. And hopefully he will get his botox next Friday once he is evaluated. We feel that his ankle is giving him problems and that is why he doesn't want to stand as much as we would like him too.

The other day Kody was scooting so fast and he went to
turn the corner and since he can't see to the left, he ran right into the wall. He screamed for a long time...he really hurt his poor head. He even had paint from the wall on his glasses. One of his first real boo boo's.... I am sure there will be many more. The good side of it is that he is getting around and getting boo boo's.

Please pray for the Katrina victims and for all the sick children ....I read alot of other caringbridge pages and there are alot of children and parents that can use your prayers right now.

Randi

Tuesday, August 23, 2005 7:46 PM CDT

Hi,
Well Summer is almost over and Kody goes back to school on Monday. He loves it there so it should be a good transition. Hopefully we won't have as much trouble with transportation as last year. That was a nightmare!
Kody went to the eye Dr. yesterday and the Dr. said that Kody's right eye looks a little better so the news is that he doesn't need surgery right now and that we are to keep patching his left eye. He said that he is not sure how well he will ever be able to see out of his right eye because of the scar tissue and he just prefers to use his left. We go back in 4 months.
Kody also went to the ENT and he has not had an infection in 4 months...yippee...that is the longest he has ever went without one. The perforation in his right ear is actually beginning to close on its own, which is wonderful because then he wouldn't need surgery on it. The Dr. said not to get to excited quite yet because he has seen perforations open back up after 7 months. But at this time we are happy. If he has no ear infections he goes back in 6 months and see what happens. The Dr. also gave Kody the ok not to wear ear plugs when swimming or bathing....this is the first time in his life he will not need ear plugs. We are really happy about this also!
Last week Kody went to the dermatologist. He really is pretty sure that Kody does not have a syndrome. His birthmark (linear nevus) is thickining but he said that is to be expected. So he goes back in a year.
Kody goes to the neurologist next Thursday. Will post on what happens after his appt.
The next appt. will be the eval for botox. on Sept. 21 and he is tentitively scheduled for the botox on his shoulder and ankle under anesthetic on Sept. 23.
WHEW!!!!! Lots of appts. We are still getting over the shock of finding out about his hip being out. That is definately hanging over our heads but have put our faith in Gods hands. Kody just amazes me every single day with his happy, bubbly, smiley, smart self!

Kassandra will be starting school all day 5 days a week on Sept. 17. We are hoping that it helps her with her social skills. I think she gets very bored at home. She says she is excited about going but time will tell.

Thanks for checking in on us.

Randi (Kody's grandma)

Monday, August 1, 2005 3:11 PM CDT

Hi,
Kody went to the physiatrist last week and she took hip and leg xrays just to be safe. She recommended Botox, so he has an appt. for evaluation on Sept. 21 and tentively the injections are to be done under anesthetic on Sept. 23.

Unfortunately the results came back and Kody's left leg is 5/8 of an inch shorter than the right one and is left hip is popping in and out of the socket. When he sits it is in but when he tries to stand it comes out. He has an appt. tomorrow morning with an orthopedic Dr. and we are praying that he doesn't need surgery. Please pray that he doesn't. I know that it isn't life threatining but we are really bummed out about it. We just feel that Kody could use a break once in awhile. I will post tommorrow after we know more of what is going to go on with it. He did get fitted for his new AFO's today and he was such good boy while they were doing the molds even though he hates when they do that.

Yes, he is still smiling!

August 3,2005
Kody went to the Ortho Dr. yesterday and his hip is partially out. He is definately going to need surgery but we are going to try to wait for awhile. The benefit to this is that as he gets a little bigger they could put a metal plate in and he would not need to have a cast on. Even though it is still a terrible surgery we feel that this would make it a little easier. We have heard that the surgery and the recovery is really really painful. The ortho wants to see him in 6 months and that is probably when we will have to do something. He said that Kody isn't in pain.

The Ortho also said that we should go ahead with his eval for the botox which he will be evaluated by a team of Drs. for (so we can get a second opionion about his hip) on Sept. 21. He feels if the botox doesn't work that Kody will be needing heel cord lengthining done...another surgery.

I look at my happy smiling Kody and most of the time I am so happy but I also feel sadness that he is so sweet and has to go through so very much that he doesn't understand. I wish I could take his pain instead of him. I don't mean to sound negative but our family is having a hard time with all of these appts. and all of this news every time we go. I believe in God and I believe that our faith will pull us through and help Kody tolerate all that goes on with him and keep him smiling. I believe that God will give my daughter and her husband the strength to endure all of the hardships and stress of watching their son endure all of this.

Randi (Kody's grandma)

Monday, July 18, 2005 2:14 PM CDT

Hi Everyone,
I am having a really great summer. We have been very busy doing family things. Last weekend we went to visit REC kids farm and I got to ride a horse and so did Kassi. Kassi really liked it but I am having a little trouble lately with not liking animals to much. But we had fun and saw lots of animals and they were very nice there. We would like to Thank them for showing us a good time.

Then the next day was the open house for my school (School for the Blind) and that was alot of fun too. They had a petting zoo (I wasn't to happy about that) but Kassi loved it. They also had a really good lunch for us and me and Kassi got caricatures done of me and her. I got a really nice book, ice cream and even cotton candy. We also want to Thank them for showing us such a good time.

My mom is officially done with work and just busy with me and Kassi now. I have a ton of appointments coming up in the next 2 months. I have an eye appt., physiatrist (to evaluate for braces and things like that), ENT, dentist, neurology, and also dermatology (my birthmark is growing and changing texture and mommy is concerned). I will keep everyone posted on what happens at them. I am doing really well with understanding things these days. I miss school and will be happy when I get to see my teachers again. I am getting therapy a couple days a week though. I quess I don't have to tell you I am still happy all the time because you probably already know that. Thanks for checking up on me and I hope your all having a really good summer.

Sunday, June 19, 2005 8:39 PM CDT

Hello,
My mommy officially handed in her resignation at work. Her last day of work is Friday July 1. She is kind of sad about this but she has decided to stay home and commit herself to taking care of me and my sister. It is a little scary because my mommy and daddy are going to have no health benefits and are cutting there income in half. We know that it is the best thing to do with all of my appts. and therapys. We also know that God will take care of us.
I know it has been awhile but we have been so busy! My Aunt Nicki got married 2 weeks ago and I got to be in the wedding and I had such a good time! I will post some pictures when we get them. I LOVED scooting around the reception. I looked like I was breakdancing because I was spinning on the dance floor. Everyone thought I was sooooo cute. I am done with school for the year and now I go to Childs Way. It is a daycare for medically fragile children. I like it there too. Course I like being anywhere!
I got some of my therapists back that I used to have and they are so very happy to see me! They said I am doing so good and have grown up since they saw me 6 months ago. My new thing is that when mommy (or anyone) asks me to lift my left arm (that is the one I have hemiperisis in and haven't really ever noticed that it was there) I actually pick it up and move it around. I will try a little bit to pck up something with it but my hand doesn't work.
I am doing good with my eye patching and I tolerate it well. Hope everyone is having a good summer!!!!
Kassi has been a very good girl lately too.

Alot of people think that I can walk and stand because my pictures are tricky but I want people to know that I can't walk yet and I can't stand unassisted. I am also non-verbal. I certainly am not focusing on my negatives but I just felt it was important to share that. I am working hard on those skills still.

Thanks so much for checking up on me and my family and please sign my guestbook so I know you were here. I love my mommy reading me what everyone says and looking at the pretty pictures

I want to Thank Tumbleweeds Foundation for granting my wish for Indoor/Outdoor carpet for my deck. It gives me the freedom to play outside on my deck without getting splinters in my bum and hands. THANKS TUMBLEWEED!!!! (Greenfield Baseball Association and I,simon Photography.)

Friday, May 20, 2005 2:44 PM CDT

HI,
Kody went to the eye Doctor yesterday and they were actually checking to see if the patching worked to strengthen his left eye and if it didn't work he was going to need surgery on his left eye, but since Kody doesn't follow any "normal" protocol he decided he is going to use his left eye now and not use his right eye. So what that means is his left eye now (opposite of before) has to be patched to force him to use his right eye. 3 more months of patching......The Doctor said chances are 99 percent that he will need surgery on his right eye. He is not controlling his eye at all.
He is doing well in school...working very very hard on self feeding and drinking from a cup. He still loves school so much but then Kody loves everything and everybody!!

Kassandra has been taking her breathing treatments willingly which is a big help.

Kim (Kody's mom) had to go back into work indefinately (she was working from home) which is a really really big hardship on everyone. Not sure what we are going to do. Kody has so many appts. all the time.

Well thanks for reading up on our family and have a great week!!!

Randi (Kody's grandma)

Alot of people think that I can walk and stand because my pictures are tricky but I want people to know that I can't walk yet and I can't stand unassisted. I am also non-verbal. I certainly am not focusing on my negatives but I just felt it was important to share that. I am working hard on those skills still.

Thanks so much for checking up on me and my family and please sign my guestbook so I know you were here. I love my mommy reading me what everyone says and looking at the pretty pictures

Thursday, May 12, 2005 6:52 AM CDT

Hello,
Well I have been having a pretty good month. The last 2 nights I slept all night! Unfortunately I am sick again. I have a very very bad cold with a cough. Hopefully it won't go into my ears. I have my eye doctor appt. next Thursday and hopefully we will get good news (no surgery) from him. I (of course) am still my happy self!!!

My new thing is that I just absolutely LOVE books! When anyone reads to me, they are not allowed to stop. If they do then I just whine and keep doing the sign for more. I even get a little angry. My gramma and mommy think it is very funny.

My sister Kassi went to the pulminologist and the Doctor is doing further testing to make sure nothing else is going on but he thinks that it is definately asthma. We have to wait for test results and keep giving her all her breathing treatments.

Friday, April 22, 2005 3:36 CDT

HI!
Well since my last update I am still learning new things. Besides knowing how to point at my colors and numbers, I learned how to scribble on paper. I learned how to blow kisses and if you come anywhere near my face I think you want a kiss...I try to kiss you. I guess I think everyone wants a kiss cause I am so lovable.
I am so happy, I got into Childs Way for the summer..(it is a daycare for special needs kids like me) and I spent some time there before I went to School for the Blind. I really liked it there. I think we found a way to have my therapy paid for but we are still working on it.

I am learning so much!! I now learned the signs for eat, more, drink and sorry....I don't use the signs appropriately yet but if you ask me them I show you I know them. Ialso learned to raise my hand in class to say that I want a turn doing something.



I am all better from being sick and back to my old self. I am even waking up at 5 again.


Alot of people think that I can walk and stand because my pictures are tricky but I want people to know that I can't walk yet and I can't stand unassisted. I am also non-verbal. I certainly am not focusing on my negatives but I just felt it was important to share that. I am working hard on those skills still.

Thanks so much for checking up on me and my family and please sign my guestbook so I know you were here. I love my mommy reading me what everyone says and looking at the pretty pictures.

I HAVE TO SHARE THAT MY DADDY PASSED HIS JOURNEYMANS PLUMBING EXAM AND HE IS NOW A JOURNEYMAN PLUMBER. I AM SOOOO VERY PROUD OF MY DADDY!

Friday, April 1, 2005 7:21 PM CST

Hello,
Well I have to do a little bragging here.....Guess what I learned to do. Do you give up?

I learned my numbers from 1 to 9. If you put them in front of me (they have to be big enough for me to see or it is tricky for me) then I can pick them out when you ask me to point to them. I am just surprising everyone. When my mommy asks me them I scan the highchair tray back and forth and everyone can tell I am concentrating and then I point to it. I think I might have seen tears in my grandmas eyes when she saw me do it. I also know my colors....green, red, yellow, blue and sometimes purple. I think I am even amazing myself these days. I have slept till 7 (all night) for 2 days now too. I am so proud of myself!!!!
I have an eye Dr. appt. the end of this month and I sure hope I don't need surgery. Happy April 1st and Happy Spring to everyone!!!
I will put a new picture on very soon.

April 4, 2005
I didn't want to go to sleep last night and screamed and screamed but mommy layed with me and finally I fell asleep. I have been sleeping a little better but still not really good.

Kassi went to the Doctor again...her asthma is acting up and the Doctor put her on another steroid, pulmicort and singulair. Maybe these will all help her.
Thanks for coming to visit my webpage and don't forget to sign my questbook so I know you were here to see me!

Thursday, March 17, 2005 5:18 PM CST

Hello,
As you see I have a new picture today. I went to school and they had a contest for best dressed for St. Paddy's day and quess what........I won! I got a little prize and a whole lot of attention. Everyone at school was taking my picture and just think...... my mom thought I didn't like all that attention but boy did I fake them out! I loved the attention. All I did was smile at everyone. I couldn't wait to smile at someone else and show off. What a good day I had today.
Then I came home and fell over in front of the tv and fell asleep again. I am so silly! (Of course I got up at 5 again today).
Thanks for reading and sharing in my day!

March 26, 2005
I am having a pretty good week but I am having alot of trouble sleeping! I am getting up at 1:30 in the morning and I am just not wanting to go back to sleep. All I want to do is go downstairs and watch some TV. My mommy doesn't think this is good for me, so she feels really bad but she is going to try to let me cry for little bits of time to see if I can get my sleep patterns back in order. I am still pleasant during the day even at school but it is a matter of time before it is going to catch up with me. Happy Easter to everyone!!!!!!!!

ps. Please pray for my friend Lance who has been very sick lately. Visit his website and say Hello to him. www.caringbridge.org/md/lance

Tuesday, March 1, 2005 8:37 AM CST

Hi,
Just a quick update to say "whew" what a day yesterday! I wasn't myself completely when I got up in the morning but Mommy thought maybe I just wasn't thirsty or hungry and there was a 2 hour delay for school so she sent me. I did Ok at the time. School called home about 12 and said that I was projectile vomiting and wasn't myself. They sent me to the nurses office and I fell asleep (and I don't ever sleep at school!) I had no fever and no diarrhea. The nurse at school was concerned and said I should go to the Dr. So Mommy and Grandma came and picked me up from school and off we went to the Dr. The Doctor couldn't find anything else wrong with me. My ears (yippee) were good and so was my throat and no fever.

Unfortunately because of my shunt everyone worries about it because it could be life threatening. So the Doctor made us go to the ER. We spent 7 hours at the ER. They had to take XRay's and CT scans and compare them to mine from about 6 months ago. We had to wait for neurology to read them because it showed a change in fluid on one side. But not an increase but a decrease. The ER Dr. wasn't sure if this was a concern or not. Neurology finally read the CT and they are saying it is not a concern. What a scare for my family.
I was a pretty good boy at the ER and I got to watch TV. I didn't scream at the Doctors like I usually do. I just let them check me over quietly. I am staying home from school tomorrow till I feel a little better. If only I could talk and tell everyone what is hurting me it would make things much easier.

I am adding this later today.....Kim spoke to Kody's neurosurgeon and he read all the films from the ER and he is very pleased with the way they look. He said the shunt is working better than before and looks great! He also said that Kody's left side of his brain (his good side) is growing exactly the way it should. It appears to be taking over the right side functions. GREAT NEWS for us!!!!!

Kody now has an eye infection in his eye that he can't see very well out of anyway. Kim has to call the Dr. in the morning and he can't go to school again. His eye has all yucky stuff coming out. It is really bothering him also. He keeps rubbing it.
Next day update.....he is on eye drops and his eye is feeling a little better but now has a bad cough and runny nose. OK what next?

UPDATE::::: March 4
Kody has an ear infection. He went to the Dr. today (again) and they are trying him on Floxin but chances are we will have to take him to ENT next week. "sigh" I thought he was outgrowing these darn ear infections.
MARCH 9
Kody went to ENT and he has a severe infection in his right ear. They cultured it and now we wait for results so they can treat it properly. The Doctor is rather concerned with his very large perforation in his right ear. We knew it had to be surgically closed but thought it would be a typically "easy" surgery. We found out that it is more complicated than that. They will have to do a skin graft from the outside of his ear to put in his ear. They can't do anything until he goes about a year without an infection. I think it will be awhile.
Thanks for checking back on Kody!

Thursday, February 24, 2005 8:57 AM CST

Hi,
Sorry it has been a while since last update. Kody was seen by a physiatrist (a specialist in needs for braces and physical rehab) at school and we are waiting for their recommendations for Kody. Kody has a little cold and so does Kassie.

Kody has learned something we are so very excited about....He points to all of his body parts including, eyes, ears, nose, mouth, tounqe, teeth, elbow, knee, toes, feet, belly and even his private parts. He is so funny when he does it. He gets that little smirk on his face and he is so proud of himself. We are so proud of him that he learned this.


Hopefully one day in the future he will learn how to say all of these words but for now we are ecstatic that he learned how to point to them. He scoots like lightning too. Kody is still being patched on his right eye and he has an eye Dr. appt. coming up soon and we will be praying he doesn't need eye surgery again.

He got a beautiful hand made spongeBob blanket from some wonderful people at Tumbleweeds. He loves to cuddle with it. I can't believe the unselfishness and compassion of people. It means alot to us. And it makes Kody smile and that means the world to us.
Thanks for coming to share in Kody's life.

Monday, February 21, 2005 11:13 AM CST

Hi,
Sorry it has been a while since last update. Kody was seen by a physiatrist (a specialist in needs for braces and physical rehab) at school and we are waiting for their recommendations for Kody. Kody has a little cold and so does Kassie.

Kody has learned something we are so very excited about....He points to all of his body parts including, eyes, ears, nose, mouth, tounqe, teeth, elbow, knee, toes, feet, belly and even his private parts. He is so funny when he does it. He gets that little smirk on his face and he is so proud of himself. We are so proud of him that he learned this.


Hopefully one day in the future he will learn how to say all of these words but for now we are ecstatic that he learned how to point to them. He scoots like lightning too. Kody is still being patched on his right eye and he has an eye Dr. appt. coming up soon and we will be praying he doesn't need eye surgery again.

He got a beautiful hand made spongeBob blanket from some wonderful people at Tumbleweeds. He loves to cuddle with it. I can't believe the unselfishness and compassion of people. It means alot to us. And it makes Kody smile and that means the world to us.
Thanks for coming to share in Kody's life.

Monday, January 31, 2005 1:03 PM CST

Hello,
Just want to let everyone know that I am still doing very good. Me and my sister went to the doctor today for our checkup and I am in the 75th percentile for my height and the 50th for my weight. The doctor said that I am doing really good. Kassandra is off the charts for height and weight. (She is a big girl)
After the Doctor my mommy, grandma and sister took me to school. They got to go to music class with me and watch me eat lunch and try to drink from a cup, like a big boy. I am doing better at it but still have a ways to go. I showed off and stood for my teacher.
The good news is that the Doctor checked my ears and they still look good. My Ot at school ordered me a new hand brace and they are trying to figure out what device would be best to help me communicate. I really love my school!
Thanks for all the continued support and concern. What would we do without all of you?

Sunday, January 16, 2005 9:54 AM CST

Hello,
Kody has been in school for two weeks now and he is loving it! He is doing very well in school. He is learning to drink a thickened consistency out of a cup and doing well at it. He is using a stander that he can wheel with his good hand and he is pushing it around the room. He is also using a gait trainer and doing well at that. He is still the happiest little guy around. He made a friend in school who he likes to laugh at and play with. He loves his teachers and therapists also and they love him.
He is sleeping better at night (all night long) but not taking naps in school at all. Even though I heard he fell asleep cuddling in one of his favorite old therapists arms at school the other day. No ear infections for about 1 month....YIPPEE....we are happy about that.
The busing is going alright even though I think we dislike it more than Kody. All in all Kody is really doing well right now! Kassandra is adjusting to him being gone all day. She spends one night a week with grandma and pappap overnight. She misses her brother. We all miss him being home but he is doing so well!
Thanks for checking in.

Monday, December 27, 2004 1:46 PM CST

Merry Christmas and Happy New Year,
We have so much to be thankful for this year! We have Kody here with us and we are a complete family. We are happy and healthy. We have had many mountains to climb but we have climbed them and are ready for more mountains if they are to come.
We want to thank all of the very special people that remembered Kody and his family with cards and presents. They mean so very much to us. It shows us how many caring people that there are in the world. Organizations like Caringbridge, Bridge of Dreams, Hugs and Hope, Quilts of love, Tumbleweed and Make a wish and the list goes on and on. These people have their own lives and yet they take the time to always remember others in their time of need. You all have our heartfelt THANKS!!!!!
Kody is suffering from yet another ear infection and is on a oral antibiotic but other than that he is doing well. He seems to understand so much more these days when we talk to him. It is like he "woke" up. He is so much more alert lately. He learned consistantly how to wave bye-bye and I have been waiting for 3 years for that so needless to say I am very happy.
He is still non verbal for the most part and not much going on with his standing (he misses his therapists) but we are working on it. He starts school next Monday (Jan. 3) and we will post as to how it went..As usual Thank-you so much for taking the time to check on Kody. It means alot to us. And don't forget to sign the quest book so we know that you were here.

The Conley Family


Kody started school yesterday and we have had some school bus issues but the school is excellent. He got a really nice aide and his bus driver seems very nice. All of the staff at the school is GREAT! I think he is going to love it there. He has a very long day though ...he is picked up at 7:30 and he gets home at 3:45. But he is still smiling. I (grandma) miss him terribly already. I will have to get my cuddle time in on the weekends.

A very BIG THANK-YOU to a very nice person named Mary for helping me with Kodys webpage!

Sunday, December 12, 2004 3:10 PM CST

Sorry it has been so long since last update but my computer is in the shop and has been for a month now and I have to go on other peoples computers to do anything.
Kody got into the school for the Blind! Horray! We are very happy about this news! He starts school on Jan. 3. We get to go with him and stay for the day and observe and meet his new therapists. We are worried about the bus ride but we are trying to work it out.

Kody went to the ear Dr. and his right ear is doing good for now (he has a large perforation in it that will be surgically closed at some time later) but his left tube fell out after 2 years and the doctor wanted to put a new one in but we decided to wait and see what happens with infections. He usually gets them in the right ear and not the left ear.

He also went to the neurologist and she was very happy with his progress and NO SEIZURES! He is having some kind of startles (he jumps like he is scared) for no reason, but she said that she doesn't think it is seizures. She feels that it is something neurological but we will address it later and keep an eye on it. She thinks he is progressing very well and she can't believe how happy he is!

He went to the eye Doctor and Kody already had eye surgery on his right eye last year and the Doctor wasn't sure how well he could see out of it.. Now the Doctor feels he isn't using his left eye very well and his right eye is stronger so we will have to patch his right eye to make his left eye stronger. We will do that for 4 months 2 hours a day and see what happens. If it doesn't help, he will need surgery on that eye.

On a happier note, Kody and Kassandra had their birthday party and got lots of nice gifts. They were both in a good mood and loved everything! I can't believe they are going to be 3 already! Kody drank 3 ounces out of a cup all by himself!!!!!!!!! That is a first for him and we are very proud of him.

Hope your all doing well and you have a very HAPPY and HEALTHY holiday!!!!!
Randi

Wednesday, December 1, 2004 1:31 PM CST

Hi Everyone,
We are still patiently waiting for the letter from the State to see if I got in School for the Blind. I don't know what is taking so long! I had another ear infection..this time it started as yeast and the Dr. treated that and 1 week later I got Staph and I am now on an antibiotic for it. I go to the ENT tommorrow morning to get it checked. I also have to go to my neurologist tommorrow at 4. Then on Friday I go to the eye Doctor. I need new glasses very bad since I like to take mine off and play with them and sometimes I like to eat them.

Please pray for a friend of mine named Spencer who is getting the same brain surgery that I had. He is having his surgery the beginning of this month. We will be thinking and praying for him! His web page is www.caringbridge.org/id/spencer

My mommy got put on a new medicine for her migraines and she has to go back to the neurologist in 2 months to see if they helped.
I am sleeping a little better these days. The days are getting closer when I have to say goodbye to all my therapists who I have grown to love. I am going to be so sad. But I am looking forward to making new friends in my new school.
Thanks for checking up on me!!!!

Saturday ...November 13, 2004 2:29 PM CDT

Hi,
We still haven't heard if I got into School for the Blind for sure but we should be hearing anyday. Me and my grandma are sad because I have been getting therapy at The Childrens Institute for almost 2 years and it is time to move on. We had to say goodbye to all of them yesterday.
I have alot of Doctor appts. coming up this month (neurology, ENT, optomologist, dermatologist and pediatrician) so hopefully all will be good visits. Mommy called the Doctor this morning because I am having sleeping problems and my breath is really really bad. I will be going for that on Friday. They think maybe I have reflux now. I wake up screaming every night and from every nap. But quess what???? I am still happy all day!!!!
I learned how to push my glasses up when they are falling down and I scoot as fast as lightening now. I am trying to learn how to stand for longer periods of time and take steps with assistance. I get tired pretty fast.
I am completely off of meds and I AM SEIZURE FREE!!

My mommy is having migraines and she is going to the neurologist this month also.
Well as usual thanks for checking out my updates and check back soon.

Monday, October 11, 2004 6:43 PM CDT

Hi Everyone,
Kody has been having a pretty good month. He had a little bit of a cold but seems to be feeling better now. Him and Kassandra went and got their flu shots today. Unfortunately we found out that Kassandra has Asthma and they are going to put her on steriods until May and see what happens. She is also on breathing treatments. She is sick right now but hopefully will feel better soon.
Kody isn't growing as quickly as the Doctors would like.(he grew 2 1/2 inches in 10 months) and he is dropping consistantly on the charts so they are just going to monitor him and see what happens. He used to be in the 90th percentile for height and he has dropped to the 23rd.
He is happy as usual and has been babbling alot. He has mastered the technique of scooting. He is getting into everything and we LOVE it!
Thanks for coming and reading

Saturday, September 11, 2004 1:37 PM CDT

Hi everyone,
Kody and Kassandra went to the dentist today and Kassandra has something called enamel dysplaysia on about 6 teeth, which they are just going to keep an eye on and hopefully will need no treatment.

Kody's jaw is not growing properly. His bottom jaw is growing slower than his top jaw. Because of this he has something called an open-bite. Usually the open bite comes from the pacifier or thumb but in Kody's case it is a structual problem. The dentist feels that it will get worse as time goes on, yet right now there is nothing that can be done. He will be referred later to a oral surgeon and an orthodontist. The dentist feels that Kody will need braces and most likey surgery. His jaw will need to be broken on the top and the bottom and reset. Right now his teeth are only completely meeting on the last molars and slightly on the next ones. Makes it very difficult for him to chew his food.

It is not news that we would like to hear. We are a little sad from this news. Please pray that Kody's jaw grows properly from this point on.

He is almost off his medication. He only has 14 days to go to be med free for the first time in his life. That is good news.

Thanks for reading and caring about our little Kody.

Sunday, August 22, 2004 11:53 AM CDT

My name is Kody and I was born on Dec. 14, 2001. I have a twin sister named Kassandra. I was born with something called Hemimegelancephaly also called HME which is a very rare seizure disorder. It occurred in the first 3 months of life in my Moms womb. It is a brain migrational disorder.

I was full term but started having seizures within 1 hour of being born. I was in and out of the hospital for the first 11 weeks of my life and then the decision was made to have a drastic surgery called a functional hemispherectomy. My seizures were uncontrollable (hundreds of them a day). I had the surgery at 11 weeks old, on March 12, 2002. The surgery is where they remove some portions of my brain and then they completely disconnect the rest of it, so the seizures can not cross over to the good side (my HME was on the right side). It was a very difficult time for our whole family and we did alot of praying!

I came through the surgery even though my family was very worried and I came home 1 week later but then got meningitis and had to go back in the hospital for a couple days. We were told that I could get hydrocephaly from the surgery and unfortunately I started having symptoms (vomiting, crankiness and rapid head growth) and had to have an emergency VP shunt put in on June 29th, 2002.

I was on 3 seizure medications and have been weaned off of 2 of them and I am now being weaned from the last one and will be completely off all meds in about 1 month. The most important thing is that I am SEIZURE FREE!!!!

I have had numerous smaller surgerys besides the brain surgerys and I do face at least one more surgery to have a perforation closed in my eardrum but not until next year. There is always the worry of shunt malfunction which would mean more surgery for me.

I do have left side hemiperisis from the surgery and also a left field cut and some other vision issues. I have compensated very well and I work very hard. I receive therapy 5 days a week from some of my favorite people (my therapists) and I am now learning how to scoot. I am so happy that I am a little mobile now. I can't wait for the day that I can walk and run.

I am enjoying getting into things and my Mom and Dad love the fact that I can finally get into some trouble. They say I have developemental delays but I plan on catching up someday.

I love my family very much and my favorite thing to do is watch my twin sister run and jump and make me laugh. I love to smile and I do it most of the time. I love Sesame street and Barney. I get alot of ear infections and I am always at the ear Doctor.

I Thank God for the Doctors that were able to do my surgery that helped me live my life to the fullest. I am a living miracle.






HEAVEN'S VERY SPECIAL CHILD



A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.


by Edna Massionilla
December 1981

Click here to go back to the main page.

----End of History----