Caring for Kelan
Your Subtitle text
About Kelan

Happy New Year 2011!!

Hi everyone!  2010 has flown by for our family.  We moved into a new ranch style house at the beginning of this year.  It has been such a great move for us.  It helps having everything on one level.  The house makes life for us and Kelan much easier.   Although the A-frame on East Lake will forever be "Kelan's House" thanks to our wonderful neighbors, Greg and Sheila Arth.  We do wish when we moved that our great neighbors could have come with us!

We have shared a lot of special times with Kelan this year!  Kelan went to the zoo and had a picnic with his cousins and Aunt Bridget.  I think every ones favorite part was the picnic!  Kelan became a big brother in May.  And he is the best big brother!  We spent as much time as we could in the back yard under our big shade tree listening to music and reading stories.  He also went swimming and was so relaxed he almost fell asleep. 

 We had Christmas in July this year for Kelan's birthday.  Our friends and family helped by donating many needed toys and items to the Child Life Services at Cardinal Glennon in Kelan's honor for his 3rd birthday!  We had such a great time and love that so many got together to celebrate such a special day.

Rosemarie and Lindsay Heath put together our 3rd annual Caring For Kelan Trivia Night.  We cannot say enough about the Heath family and all of our friends that volunteer so much of their time to put this event together.  They are truly amazing and selfless people.  We are happy to be a part of the Heath family!  This year’s event raised over $7,000 for the Footprints Program at Cardinal Glennon.  Kelan and our family is a part of this program.  Footprints provides emotional and financial help to families like ours.  We had such a great night and again this event would happen without the Heath family and friends!!  Thank you so much!!

Darren and Rochelle ran several events wearing their team Kelan shirts.  Keeping Kelan close to their hearts and sharing Kelan's story with others and helping to provide information about Lissencephaly.

This year Kelan also transitioned out of Early Intervention and into Pre-K.  He goes 4 to 5 days a week for 2 1/2 hours to LeClaire Elementary.  The teacher and therapist are incredible.  It was a great feeling seeing Kelan go to school.  We did not envision this for Kelan after learning of his diagnosis.  He loves his class - art projects, singing songs and sitting with his special friends.  Like most parents we cried Kelan's first day of school, but it was happy tears.  It was a dream come true to see Kelan off to school.

 Kelan has had several procedures to help with his secretions and respiratory issues.  This is something Kelan has struggled with a lot this year.  As Kelan's parents his quality of life is the most important thing to us.  Loving Kelan is so easy!!  Making the medical decisions to achieve the best quality of life possible for Kelan are not so easy.


We thank you all for your support and devotion to Kelan and our family.  For those of you on Facebook we have a Team Kelan page which has pictures and updates. 


We wish all of you a peaceful and Joyful 2011. 

 Love to you all,

 Jamie, Tim, Kelan (3 years) and Riley (7 months)

July 13, 2010

Message from Kelan's Mom
"I can't even begin to tell you how much I love Kelan. I can hardly believe he will three and I couldn't be more excited to share this birthday with Kelan, his new sister and our friends and family. Kelan has given me so many gifts. I am a very lucky mom/person. I am grateful for each day and try hard to stay in the moment and not wish the moment away. We have amazing family and friend support. Love you all!"


July 14, 2009

Hi Everyone!  Today is Kelan’s 2nd birthday…YEAH!!  It is hard to believe he is two.  Since last July, so much has happened.  It has been a year full of ups and downs. 

Kelan has finally started to gain weight.  He definitely is looking more like our little boy instead of our little baby boy, but still handsome as ever.

Kelan has been on several trips – Chicago, Greenbay and just recently to Branson. Chicago we shared with Grandma and Papa Elders, Greenbay we shared with Darren and Rochelle and Branson was just the three of us.

In August of 2008 Kelan received his feeding tube.  This has been a great change for Kelan’s health. We have definitely spent less time at our home away from home, Cardinal Glennon.  Reflux is still a concern because of silent aspiration.  In June 2009 Kelan started a continuous feeding schedule.  His food is fed through his tube over a 14 hour period during the day.  We have seen some positive changes since this has begun.

August 17 Kelan will have surgery to have his adenoids removed.  This is an out-patient procedure. Kelan’s adenoids block 90% of his nasal passage.  This was discovered when Kelan got Pneumonia in March 2009. Hopefully this procedure will help Kelan breath more easily and allow him to be more comfortable

Our awesome group of friends had put together a night out for Tim and I to celebrate my birthday, but Kelan had other plans.  On March 26, Kelan was admitted to Cardinal Glennon with Pneumonia. This was the most scared I had been regarding Kelan’s health.  He was having difficulty breathing.  He ended up in ICU for two days and in the hospital a total of 6 days.  Once Kelan started on a heavy dose of steroids he made a quick turn for the better.  We were so grateful. 

We were released from the hospital and kind of ruined the house cleaning surprise by coming home early.  It worked out great because after our friends were done with the task at hand we spent some quality time together eating pizza and getting a few smiles from Kelan.  It was awesome!!  The three of us have the most amazing friends and family!!

Kelan had his first trip to the zoo last Wednesday, July 8.  Aunt Bridget and Kelan’s three cousins, Ethan, Drew and Colin; all shared this day with us.  We had so much fun and got some great pictures. We all had a picnic under the trees in the park after the zoo.  It was great!!

Kelan still spends three days a week with his Aunt Sheila and friends at daycare.  The kids have been great with Kelan.  They are all so sweet!  My Aunt is awesome.  We are grateful to her for helping us out each week.

My aunt has been on vacation the past two weeks, so Grandma and Papa Elders have been coming to our house to watch Kelan.  This has been great!!  Kelan loves spending time with them and I know how much they love spending time with him.

Kelan has an EEG scheduled for Wednesday, July 15.  We are still having a hard time keeping his seizures under control.  We are not sure what answers we will get, but we just have to keep trying.

Thank you to everyone for all your love and Support!!

Dear Kelan,

Happy 2nd birthday! Daddy and I are so lucky to have you and so proud of you.  You are growing up so fast. 

Your 2nd year with us, as usual, has been full of surprises.  You are a little fighter and that is one of your many beautiful qualities.  I love that you never give up and that you always give me hope.

We have had so much fun over the past year together and created lots of memories that I will treasure forever. I think your dad wants to take you to every Green Bay/Dallas Game…you are his good luck charm!  Besides the Cowboys victory, your dad’s favorite moment was when you smiled up at him right before kick-off.

You were able to stay the entire time at this year’s trivia night.  You were such a good boy and so many people were happy to have the opportunity to see you.  Over 500 people came to give their love and support to you and our family. Kelan, you are a special boy to have a party of that size by just being you.

You are doing so well in therapy.  Your progress might seem small to some, but it is huge to us. Daddy and I are excited to see what new tricks you have up your sleeve! This year you are rolling from side to side and you can hold your head up so much easier. Your vision has improved so much. Your cousins and friends love that you look right into their eyes when they are talking to you.

We are excited for your birthday party…superman is your theme this year.  I definitely think it is the perfect theme for you.

You are brave and strong little boy.  You don’t complain nearly as much as you should. You make me a better person and have taught me what is really important. I am so lucky to have you. 

Happy birthday little man… I love you so much Kelan.

Love always,



April 20, 2009

It has been a few months since my last update to the website.  Kelan is a tough little boy.  He is doing much better since the pneumonia (March 09).  That was a scary couple of weeks for us. The doctors and nurses were wonderful at Cardinal Glennon. It was a long stay in the hospital but we were very happy to bring him home. Our wonderful friends had put together a night out for Tim and I and unfortunately Kelan got very sick and ended up in the hospital for several days.  We can’t thank you guys enough for wanting to take care of Kelan so we could have a night out together.  You guys are incredible!!  I love that fact that our friends and family are not afraid to take care of Kelan and his needs.

It has been a little over a year since Kelan was first diagnosed with Lissencephaly.  Sometimes I can’t believe it has been a year and then other days it feels so much longer.  We are still struggling to keep Kelan’s seizures under control.  We know this will always be an issue.  Dr. Fenton is a wonderful with Kelan and works well with us to find a balance of seizure control and quality of life for Kelan and our family.   

Kelan had been staying out to the hospital since getting his feeding tube/G button in August (Darn Pneumonia!).  This has helped tremendously.  We still have to worry about aspiration because of Kelan’s saliva and other secretions.  We have added a pulmonologist to the list of doctors Kelan sees.  Great doctors and I have learned a lot in only two visits.

Overall Kelan is doing well.  He seems happy and just like us all has his good days and his bad days.  He is still with my Aunt Sheila three days a week.  He loves her so much and she loves him.  The kids are so good to him and he loves to watch them play!  I am home with Kelan two days a week.  We do therapy sessions those days and try to fit in our doctor visits too.  It is nice spending the extra time with Kelan.

We just finished the 2nd Caring for Kelan Trivia Night.  It was a great success!  Rosemarie Heath and Lindsay Heath along with their family did an incredible job in organizing and running this event.  There is so much work and love put into this event!  Even with all that is going on in the world and everyone’s individual lives – we had over 500 people participate in the trivia night, numerous donations and awesome volunteers working the event!    Saying or writing “thank you” just doesn’t seem to be enough for all that everyone has done for me, Tim and Kelan.

Kelan will be turning 2 in July!  It is hard to believe!  I love everyday and moment I have with Kelan. We have an amazing support group of family and friends that help us get through each day.  I have learned so much in the past two years.  Kelan has given me a new purpose in life and I am forever grateful. 


I also wanted to let you know that Rochelle started a Team Kelan Facebook page.  Check it out.  We have updated pictures of Kelan and Team Kelan.


I will do my best to keep you updated on Kelan’s progress.  Thank you so much for all your love and support.


March 29, 2009,

It's been a while since I updated this page...sorry about that.  Since September Kelan has had his good days and bad days.  He went for over a week without a seizure.  He is currently in one of his bad stages.  He is currently in the hospital in the PICU with pneumonia.  He is having real trouble breathing. 

He is currently on oxygen tube right now going directly into his lungs

His muscles in his neck are supporting his head and windpipe and therefore impeding his breathing

They aren’t sure his brain isn’t communicating to his lungs to breath or what.

Chances are that if he gets pneumonia again it would be worse.

They moved to PICU.

Please put those good thoughts and/or prayers out there.Please keep the little guy in your prayers


September 14, 2008
Today was a bad day to be outside.  But serveral members of Team Kelan along with a couple thousand other runners  braved the weather to run the Lewis & Clark Marathon/Half Marathon.  It rained over 5 inches in St. Charles in just a few hours along with 30 to 40 mile winds!  Crazy weather!!
My mom called me several times that morning to see if I had heard from any of the runners and couldn’t beleive the race was still happening  and that our friends were still going to do the race. 
I know exactly what  Tim (daddy to Kelan), Rochelle, Darren, Bryan and Kellie were thinking…Kelan is fighting seizures and respiratory infections each day and we can spend a few hours in some rain and wind to honor our commitment.  Each one of them had there own personal goals and Kelan as motivation.  You are all amazing and wonder ful and we are very fortunate to have you in our lives.
Today Kelan is 14 months old and I am grateful for every minute of every day that Kelan is a part of our lives. He is a special boy and is surrounded by a lot of love from some extra special people.

September 7, 2008
It has been almost 2 months since Kelan’s first birthday and so much has happened.  Kelan had a few good days after his birthday, but battled a respiratory infection most of July and August.  Kelan has had one to two respiratory infections a month since March.
During his hospital stay over 4th of July weekend we asked the doctors about a swallow study to see if Kelan was aspirating on his food and could this be a possible cause for his infections.  Aspiration is very common with children diagnosed with Lissencephaly.  The doctor’s agreed it would be a good idea.  So I worked with our pediatrician to get this setup.  We had a couple more ER visits in July because of Kelan’s breathing.
On August 15, 2008 Kelan had his swallow study.  We found out that day Kelan was silently aspirating on his food.  The amounts that were going into his lungs during one swallow would have made you or I choke and gag, but Kelan just kept on eating.  This was hard news to hear.  The therapist who did the study basically told us our options were a feeding tube or depending on our philosophy let nature take its course.
By chance I had a GI appointment setup on August 19.  The doctor’s had the results and we began our discussion of a feeding tube.  Everything happened so fast.  The doctor almost didn’t let us take Kelan home from the appointment.  He sounded so bad (respiratory) and since he was aspirating the doctors wanted to take action quickly.  We were admitted to the hospital on August 20 so Kelan could get a temporary NG tube through his nose until his surgery could be scheduled for the Peg Tube placement through his stomach.  We spent 4 days in the hospital, were released for a few days and brought Kelan back to the hospital on August 27 for his surgery.  We had lots of phone calls and Grandma and Papa Elders were at the hospital with us before Kelan went into surgery.  We knew this was the best thing for him, but it was so scary and happening so fast.
The surgery went well…Kelan is a tough boy!  It only took 30 minutes and daddy got to carry him from recovery into our hospital room.  The first couple days were rough just because of pain, but the doctors and nurses were all over making Kelan comfortable.  We were released after 4 days in the hospital.
Each day Kelan is getting back to his old self.  He is adjusting to not eating by mouth and has to have his pacifier, but has a very weak suck and has a hard time keeping it in his mouth.
We saw Dr. Fenton on September 3 for a follow-up regarding Kelan’s seizures.  Things had been going well.  After the Swallow Study we saw a pattern of increased seizure activity and even more after surgery.  Kelan has been placed on additional seizure medication.  So we will see how things go.
Overall, Kelan is doing well and growing.  We are good too.  Kelan has some busy weekends ahead of him.
September 13 is his Cousin Ethan’s Birthday party, September 14 his dad and lots of other Team Kelan members are running in the St. Charles Marathon.  Uncle Darren is running his 1st marathon.  This is something he wanted to accomplish before a special birthday and Kelan helped give him that motivation.  This is also his dad’s 1st ½ marathon…Go DADDY!!
September 20 the three of us along with Darren and Rochelle are traveling to Green bay for a football battle – Dallas Cowboys vs. Green bay Packers.  This was a gift Kelan and I got for his dad for father’s day.  We are all so excited to be taking Kelan to his first NFL foot ball game.
We have a couple of weeks of relaxation and then we head to Chicago to see Dr. Dobyns on October 14.  Grandma and Papa Elders are taking this trip with us.  My mom hasn’t been to Chicago before, so we will do a little site seeing, eat some AWESOME pizza and then meet with the doctor.
Also I wanted to mention the passing of my grandmother and Kelan’s great grandmother this past week.  She was an amazing lady and we shared some wonderful memories that I will treasure forever.  I was so happy that she and my grandfather were able to meet my son.  She loved him dearly and always said I had a very special son…she was so right!
I will do another update after our trip to Chicago.  I hope you are all well and thank you for your love and support.


July 14, 2008 – Kelan’s 1st Birthday




Dear Kelan,


 Happy Birthday!!  I can’t believe you are a year old!!  Without a doubt you have made me and your daddy so happy and have brought so much to our lives.  Every time I look at you it makes me smile. You are such a sweet boy and we are so lucky to have you as our son.


 I remember when I was pregnant your daddy and I were going to Kohl’s to do a little shopping.  Your daddy said, “I am so ready to become a parent…that’s all I want to do is be a dad.”  I can’t tell you how hard your dad worked getting our house ready for your arrival.  We love living on the lake and new it would be a great place for you to grow up.  We decided to add a four season sunroom to our house to make sure we had space for our growing family and changed the spiral staircase to a traditional staircase for safety.


 It is amazing how much has happened and changed from the day you were born until now, your 1st birthday.  Kelan, you are the sweetest, beautiful, bravest and toughest little boy I know.  I truly wish that your life was easier than it is.  You are a brave little soul.


 My most favorite part of being your mom is when I am feeding you and you are looking up at me with those big hazel eyes.  You look so content and as far as know all is right in your world at that moment.  It’s hard to put into words, but in those moments I even feel like everything is okay. 




Kelan you give me the strength to go forward everyday.  You are so special not only to me, but a lot of other people.  You have such a huge family!  You will always be surrounded by love and hope.



You are my son and I love you with all my heart and soul.


 Happy 1st birthday!










June 2008




June was a good month for Kelan.  He was content and happy.  Just the way we like him!




He celebrated Father’s day watching the US Open with his daddy.  This is a tradition Tim couldn’t wait to start.  They were too cute together.




Kelan also went to see his cousin’s Drew and Ethan play baseball.  Both boys did great at there games and Kelan cheered them on!




June 22, 2008 a wonderful woman, Sandy, who runs Killion’s Irish Bar in Caseyville, IL , put together a Poker Run for Kelan.  Sandy had everything in full swing for the Poker Run before ever meeting the three of us.  Sandy heard about Kelan through mutual friends that helped with the music benefit in May.  We are so grateful to Sandy and all the volunteers from Killion’s who worked the event!  We had lots of fun! 




Sandy and her mother also gave Kelan a very special gift.  Sandy wrote a letter to Cracker Barrel’s headquarters to ask for a donation, something Kelan would enjoy.  Cracker Barrel donated a beautiful white rocking chair that now sits in our sunroom.  Tim and I use it daily to rock Kelan.  He loves the movement and it works perfect in the sunroom.




A week or so after the poker run, some children got together and had a lemonade stand and bake sale for Kelan.  Their parents had come to Kelan’s Trivia night in April and the kids wanted to do something to help too.  There goal was to raise enough money for Mickey Mouse to come and visit Kelan.  How sweet is that!!




Kelan has done so much for us and many people.  He has brought new friends into our lives.  Kelan is so loved by many people and Tim and I thank you!  He is so special to us!

May 22, 2008


Today Kelan gave us another scare! He was at daycare when he stopped breathing and my aunt Sheila called 911. The ambulance rushed over but Kelan was feeling much better. We rushed to his side. The doctor’s recommended upping his doses of Topamax and Phenobarbitol. He has been much better over the Memorial Day weekend.






May 20. 2008





Today Kelan was taken by ambulance to Cardinal Glennon Children’s Hospital. He had not been feeling well for a couple days and his oxygen level had dropped dramatically and he required breathing treatments and tests. All the tests came back fine and after an IV fluids and some food he was feeling much better.







May 19, 2008





Hi everyone!!  Sorry it has been so long since our last update.  It has been a very busy month. 




April 6, 2008 was the St. Louis Marathon.  It was so much fun!!  There were a lot of Team Kelan members running the race and some there to support the runners.  It felt so great to accomplish this.  I had decided I was going to run the ½ marathon when I was pregnant with Kelan.  The night we got home from our first stay in the hospital I received a gift from Kellie, a running book.  I decided that night that I would still do this for me and now I would do the run for Kelan too.  Other friends of ours decided to join in this cause…I can’t tell you what that meant to me.  Erin, Beth and Jennifer also took it upon themselves to get sponsors for the run to help with Kelan’s care. Thank you so much!!  Rochelle and Coke arranged for an awesome tailgate after the run.  Beth and Gina, my mom, Kenni, and my sister, Bridget were the first people I saw when I was coming up on the finish line and Kelan and Tim were there with big hugs and kisses.  It was a great day.




April 12, 2008 was the Trivia night for Kelan.  Rosemarie and Lindsay Heath decided to do this for us the day they found out about Kelan’s diagnosis.  It was an incredible night.  We had 68 tables…the hall was packed!!  It brought tears to my eyes so many times that night to see how many people came to help our son.  The Trivia night was the biggest ever at the KC hall!! Rosemarie’s family worked very hard to make this such a great event.  It is so hard to put into words how we feel about all the support we have received.  It was incredible feeling to see this room full of family and friends.




April 14, 2008 Kelan unexpectedly ended up in the hospital with RSV.  This was scary as respiratory infections are not good.  Kelan was only in the hospital one night.  There are no antibiotics for this infection, you just watch their breathing and let it run its course.  It lasted about 2 weeks.  He had a low grade fever which increased his seizure activity a lot and made them very frequent.  Things are much better right now.




May 4, 2008 was the Music Benefit for Kelan.  Karan and Michael decided that this is something they wanted to do for us.  Michael is part of the Well Hungarians.  We had such a great time…everyone had a great time!!  There were three bands - Doc Holiday, Driven and The Well Hungarians.  They put on a great show!!  Kelan had such a great day.  He loved the music and the people.  Karan, Sherri, Susan and Rochelle put in a lot of time and effort to make this come together.  We can’t thank you enough.  We had lots of friends and family volunteer to work the event – selling raffle tickets, working the door, helping in the kitchen, donating auction items, and donating desserts.  It was such a great feeling that day. 




The weather is warming up, so we have been able to get Kelan outside more.  He loves it!  Things are going well and Kelan is getting so big.  He is 10 months old.  I can’t believe his 1st birthday is just around the corner. 




I just had my first mother’s day with Kelan and Tim.  So much has happened, but I am thankful that Kelan is my son.  He warms my soul and makes me smile.  Tim and I are completely in love with him.  He is so amazing.







Thank you for your love and support.

April 1, 2008








Today we met with the genetics doctor.  Kelan has Isolated Lissencephaly (ILS).  He has a deletion in Chromosome 17 of the Liss1 gene.  This is something that just happened at conception.  There was nothing that could have been done differently to change what has happened to Kelan.  The chance of this happening again is less than 1%.  It makes us feel better to know that this is something that just happened and not anything we did or didn't do.  I know that doctors told us this from the beginning along with all of our family and friends, but as you can imagine it is nice to have this confirmed. 




 We will be going to Chicago to meet with Dr. Dobyns who has done loads of research on Lissencephaly and we hope he will be able to shed some more light on Kelan's diagnosis.  We are very happy with the care that Cardinal Glennon is giving Kelan, but want to make sure that we do everything we can to help him.  The appointment isn't until October 14 which is kind of surprising that we have to wait this long since what Kelan has is so rare, but who knows what else the doctor is involved in.  He is the expert with Lissencephaly and I think how lucky we are to have him in the same state as us.




 We have now added some baby food to go along with his formula on the Ketogenic diet.  It's not much, but its a start.  He seems to like it.  No bananas yet, but hopefully soon! They were Kelan's favorite before he started the diet.




 We are doing well.  Kelan is getting big...I can't believe he is 8 1/2 months old.  No teeth yet, but he is working on it. 




 We have a follow-up with Dr. Fenton in a couple of weeks. We have lots of questions and hope to get some answers or at least an idea of where we are headed with Kelan's seizure treatment.




 Thank you for your limitless love and support!!






March 2008
 It’s hard to believe it is already March, spring is finally here and Kelan is 8 months old.


Kelan has been on the Ketogenic diet for over a month.  We have seen a lot of positive changes in Kelan since the start of the diet.  He is so much more alert!  He can focus on objects and track the objects without hearing them and most important…he started smiling again!!


Kelan has Occupational and Physical Therapy each once a week and Developmental Therapy twice a month.  We have learned a lot from the sessions.  Lisa, Laura, Mindy and Margie are the therapist.  They are very important people in our lives.  They are so positive and want so much success for Kelan. 


We were back in the hospital on March 8 for a few days.  Kelan’s seizures were changing and he was having breathing issues.  He had also stopped dumping Ketones.  The higher his Ketones, the better.  No one seems to have a definite answer as to why one day he was dumping Ketones and the next day he wasn’t.  This is the hard part…not having definite answers. The doctors made changes to his medication and changed the ratio of his formula.  We are still battling with seizure control, but are seeing some positive changes with the increase of medication and the increase of fat to Kelan’s diet. We see Dr. Fenton on April 14, so we hope to find out more information and get a plan into place for next steps with Kelan.


Through all of the changes, Kelan is amazing.  He still smiles and babbles.  He is a tough little boy.  We love him so much!!


On March 15 we had our 1st Team Kelan outing…it was a blast!!!  Our friends and family are so amazing…we couldn’t do this without them and the best part is they won’t let us!  We love you all so much!!


April 1 we have our genetics meeting.  Kelan tested positive for Lissencephaly Type 1.  It is a genetic disorder.  We hope to find out if we were carriers or if this was something that spontaneously happened within Kelan.  From this test the doctors might be able to tell us what pieces are missing from Kelan.  Not that this will change anything, but I think we will find some comfort in answers.  There are so many unknowns with Kelan’s diagnosis that any definite answers positive or negative are helpful.


I decided to take a break from work for a couple of weeks and stay home with Kelan.  I will be back to the old routine on April 8.  This will give me a chance to catch up on sleep, do some more research and most of all spend quality time with Kelan.

Novemer 30, 2007 to February 3, 2008




Kelan was born at


 Kelan was an alert and a happy baby. Mommy stayed home with him for 12 weeks and spoiled him. He saw his first Halloween dressed as a little devil! At 12 weeks, when mommy was returning to work, Kelan started sleeping through the night (just in time!).  He loves his mommy!! He also enjoyed his first Thanksgiving with both mommy and daddy’s family. We watched the Dallas Cowboy football game as we do every year. They beat the NY Jets 34-3! Everyone was so excited to have Kelan in their life!   


 On November 30, 2007, Tim and I were playing with Kelan on our new bed and noticed him pulling his body together, kind of like a sit-up.  He did it a couple of times and then spit up.  We just thought he had a belly ache.  We noticed him doing it more and more over the next couple of days and he seemed to be having a lot of belly issues.  We took Kelan to the emergency room on Tuesday, December 4 because he was very inconsolable and kept pulling his body together.  He seemed to be in a lot of pain.


 Kelan didn’t pull together for anyone to see at the emergency room, so all they had to go by was our explanation.  They took x-rays of Kelan’s stomach which showed a lot of air in his belly.  They thought he had really bad gas and put him on pedialite for 24 hours.  This did not work.  We saw his pediatrician on Thursday, December 6 and found out Kelan had an ear infection.  So Friday we decided mommy would stay home with Kelan and give him some extra attention and love.


 Friday everything started to change for the three of us.  We took Kelan to the ER that afternoon after he had stopped breathing. After a couple of hours and some inconclusive tests Kelan started having a seizure in front of the nurse which required him to have oxygen.  Until that very moment Tim and I didn’t realize that his body pulling together was seizures; that’s what had been happening to him all week.  He was then taken to Cardinal Glennon by Ambulance and we followed.


 It was pretty scary following our son in an ambulance.  Lots of crazy stuff goes through your mind, but we never imagined that any of this would be happening to our son.


 After a long night with some scary seizures they did an EEG and immediately put Kelan on seizure medication.  His breathing and vitals now were stable even during a seizure.  Thank goodness. 


 On Monday, December 10 Kelan had his MRI.  It was about a half hour after Kelan returned from the MRI that a team of doctors came up to our room to discuss the results. What happened next was the worst moment of our lives. The team of doctors told us that Kelan’s brain never fully developed during the pregnancy. The medical diagnosis was Lissencephaly. The doctors told us that Kelan would never be able to walk or talk and that he is going to require a lot of love and attention to help him live the best life possible. So our journey with Kelan begins. We have spent much of the time after learning of this diagnosis in the hospital attempting to control his seizures. As of today we are still experimenting with a few options. Starting on Feb. 11th, we will admit Kelan for a week and start him on the Ketogenic diet. This diet has a very good success rate of combating the seizures but requires a very strict diet. We are willing to do whatever it takes to beat these seizures. Starting the week of Feb. 4th Kelan will begin to receive Physical, Occupational, and Developmental therapies. This will help Kelan with all his milestones that he would otherwise have problems with.

Our friends and family have been so supported through these very difficult times. There have been many tough times and we could not make it through this if not for their help. We cannot thank all of them enough. They will all be in our debt forever.


 We remain strong and determined to give Kelan the best life possible. We intend to take him places and show him all the wonderful things this world has to offer. Kelan is a strong, playful, and amazing young boy.


 We will continue to keep everyone posted on our progress and hope to share some great moments in the future.
























My likes and dislikes:
  • I love my mommy and daddy
  • I hate having seizures.
  • I love to be rocked
  • I like to make people laugh by farting really loud?
  • I love the members of Team Kelan!!


Web Hosting Companies