Our son Kaleb Roman Palicki was born on August 15th, 2012. He was diagnosed with Lambdoid Craniosynostosis on October 23rd, 2012. Craniosynostosis is a rare birth defect that causes one or more sutures on a baby’s head to close earlier than normal.
The skull of an infant young child is made up of boney plates that allow for growth of the skull. The borders at which these plates intersect are called sutures. Therefore when a suture is closed, it causes problems with a normal brain and skull growth resulting in an abnormal head shape and asymmetrical facial features. The best and accurate way to diagnose Craniosynostosis is a CT scan (CAT SCAN) of the head. There are four main types of synostosis which are: Metopic, Coronal, Sagittal, and Lambdoid. In Kaleb’s case, he has the rarest of synostosis. Lambdoid occurs in 1 in every 300,000 live births and surgery is the only way to go.
Kaleb has a secondary condition called Chiari Malformation. It’s a malformation of the brain in which his cerebellar tonsils (bottom part of the brain) is herniated into his spinal column. There are many problems that his Chiari can cause a variety of symptoms ranging from: headache pain that can begin at the back of the head and radiate behind one or both eyes to the top of the head or temples. It is often described as a pressure sensation that can be heavy, sharp or stabbing. Coughing, sneezing, or even laughing can trigger some symptoms. There are also some visual symptoms: dizziness, difficulty swallowing, pain in neck or arms, and even worsening symptoms with problems walking, respiratory, heart and abdominal symptoms.
So far what we see in Kaleb which we don’t know if it’s from his Chiari or inter-cranial pressure. We saw changes in his bowel movements, he developed insomnia, and when he does fall asleep he will wake up screaming in pain, which will go on frequently. We also notice him pulling at his head a lot, and roll his neck back and forth. We have also seen Kaleb have difficulty swallowing or choking that comes and goes more often than normal. He doesn’t need to be eating or drinking anything for this to happen.
Kaleb also has a third diagnosis of torticollis which is a twisted neck in which the head is tipped to one side. Kaleb has been in physical therapy since he was diagnosed in October (2012). His torticollis has improved greatly with the help of his excellent physical therapist. We still have more to climb but what an improvement from birth.
Kaleb went under an invasive 6 hour long surgery on November 29th 2012 called a Cranial Vault Reconstructive surgery also known as CVR Surgery. It is a complex surgery that requires a pediatric cranial facial surgeon and a pediatric neurosurgeon. An incision is made from ear to ear and the skull is basically taken apart and rebuilt to provide room for normal brain growth to reduce inter-cranial pressure.
Before Kaleb could undergo his surgery he had to be seen and evaluated by a number of specialists. These specialists were a plastic and neurosurgeon, an ophthalmologist, neurodevelopmental psychologist and down the road he may have to see an otolaryngologists, speech and language pathologist, a dentist and orthodontist. The reasoning is because cranial facial deformities affect not only how the child looks but how the brain develops, how the child may see, hear, speak, eat, and breathe. In some cases some children have heart, lung, and kidney issues. It basically is take one day at a time and take all the good and positive you can. He will continue to see these rounds of specialists throughout his childhood as he matures into adulthood.
"No act of kindness, no matter how small, is ever wasted."
May 14, 2017 Prayers for Texas!! Hi everyone!! It's been awhile! People have been asking my husband and I.... How everything is going?? We haven't seen any updates!?! So here it goes.... Back in August, Kaleb's birthday was wonderful!! We took him to the zoo to celebrate and it was one to go down in the books! The holiday season was fantastic!! The best one yet! A lot of good times were had and a lot of memories were made. Kaleb was on a good streak and all his appointments were going well! So we were just living in the moment, day by day, enjoying EVERY SINGLE MINUTE OF IT:-) [More]Where there is great love, there are always miracles...
Aug 30, 2016 Hi all!!!! Sorry we haven't upated in awhile. We have been adjusting to our new routine of life and so far it's been pretty great! We are a little more tired then usual but life is good! Kaleb has been doing fantastic! We have had a total of nine doctor appointments since he had his surgery in Janurary and everything is checking out well! We are due to see most of his specialists this fall. We are also due back in Texas this March to see the rest of his specialists along with another MRI flow study. We will keep everyone updated about those appointments. Kaleb's treatment every evening is still working correctly. It still takes us about two hours every night but Kaleb is finally pain free when it comes to his tummy. His bloatness has also improved so much!! Our little man no longer has Santa's belly! [More]I Surrender
Feb 12, 2016 A wise woman once told me that God provides our tiredness and helps our mind to not process too much at a time. She said it's our body trying to conserve energy for survival during the hard times. God lets you know when it's time to surrender and it always seems to hit just after the eye of the storm has passed. This wise woman told me that time will heal and to try and rest when we can. She told me to dream of what our family will do in better days to come....and I promise you, they will come. [More]Surgery date is set.... Along with a message of encouragement
Dec 28, 2015 " The Oak Tree" - by Johnny Ray Ryder Jr. A Message of Encouragment. [More]Surgery has been cancelled and pushed back
Nov 30, 2015 Hi everyone!!!! We hope you all had a wonderful Thanksgiving!!! We just wanted to give a quick update about surgery... Surgery has been cancelled and pushed back... [More]Kaleb medical update
Nov 9, 2015
We have a few medical updates for everyone but we wanted to first say a BIG THANK YOU for all the prayers, love and support that you all have given our family. First off....The results in regards to Kaleb's procedures back on October 19th and the 20th, have shown that a portion of his large intestin/colon does not work. What does that mean exactly... The muscles and the nerves are not working in the last part of his large intestine/colon. That is why the poor little guy is in pain from time to time and is also the reason why he can't get his poop out. For those of you that don't know, the large intestine/colon are the same thing. We didn't know that until now, so we are learning more as we embark on Kaleb's journey. The large intestine/colon is the big upside down U shaped intestine. After Dr. Sood (our motility GI specialist) looked inside Kaleb's intestines, he told us not only were they in bad shape but he feels Kaleb also has low muscle tone. What confirms his suspicions is that Kaleb was born with his stomach muscle lining open that never closed up. Dr. Sood said that makes it even harder for Kaleb to push. [More]
Prayers for Kaleb
Oct 17, 2015 As Kaleb's procedures slowly approach upon us, we ask for prayers please. We leave this Sunday the 18th for Wiconsin and Kaleb's journey will begin on Monday and Tuesday at Children's Hospital of Wisconsin up in Milwaukee. Depending on how everything goes and what they find, we may have to stay longer. [More]Thank You for all the LOVE and SUPPORT
Oct 2, 2015 First of all..... we just wanted to say a BIG THANK YOU to everyone who rocked their purple in honor of our little man <3 You guys showed our family soooooo much LOVE and SUPPORT!!!! You guys are the BEST and we APPRECIATE each and everyone of you!!!! [More]ROCK YOUR PURPLE!!!
Aug 29, 2015 September is craniosynostosis and chiari malformation awareness month!!!! We challenge all friends and family to ROCK YOUR PURPLE!!! Help spread awareness and show our little Kaleb some LOVE!!! [More]Happy Birthday Kaleb
Aug 15, 2015 Happy birthday to our beautiful baby boy:) We are so blessed and very thankful that God gave you to us. Thank you for teaching us what's really important and for showing us the things that really matter in life <3 [More]Children's Hospital of Wisconsin Appointment update
Jul 14, 2015 First of all, we wanted to thank everyone for all their well wishes, prayers, text and phone calls!! Thank you for showing us all so much LOVE and SUPPORT <3 [More]I will cast my cares.....
Jul 10, 2015 I will cast my cares on YOU..... A sentence that we tend to live most of our life by. [More]Prayers for Kaleb! Gastrointestinal issues
May 5, 2015Kaleb has been at CDH since Sunday around 3:00am due to his gastrointestinal issues. The hospital has been trying different procedures to help him but are coming up with no results. They know there is a problem and are trying to find a solution, so we are being transferred over to Luries children's hospital this morning. Please pray for Kaleb for no surgery and for a solution.
[More]Kaleb update
Apr 14, 2015Hi everyone :)we got some great news in regards to Kaleb's MRI flow study!!! Kaleb's brain looks good, brain stem looks great and it is not bent anymore :) spine looks good, CSF fluid is flowing just as it should and no tumor :))). So we got the best news ever and we don't have to go back and see Dr. Swift for two years!!! So as long as Kaleb is having no problems, two years is what we are shooting for in regards to his brain :). In regards to his bowels, we are still in communication with Kalebs gastro specialist and we are waiting to see how this month goes for Kaleb.
[More]Leaving for Texas soon!
Mar 26, 2015 We are leaving for Texas on Saturday the 28th around 2am. Kaleb will be put under for his three hour MRI flow study scan. They are checking to see how his brain, brain stem and CSF fluid looks. In the mean time, with Kaleb's bowel issues he has going on, they are also checking for spinal nerve damage and a tumor. [More]Kaleb update
Feb 27, 2015 Sorry we haven't updated in awhile... It's been a little crazy around here, pretty much since we got home from brain surgery. It's been a lot of different doctor appointments! So from dealing with Kaleb's bowel issues and between the crazy sicknesses that were going around.... We have been to non-stop doctor appointments, blood work testing, x-Rays, and even more testing! [More]Kaleb update
Jan 12, 2015 Hi everyone! :) We hope you all had a wonderful Christmas and a safe, Happy New Year! Sorry you haven't heard from us but we were just enjoying every single second of this past holiday season. We were taking every single moment in :) Kaleb has been doing good, although he is still having problems with his bowels. Kaleb started having these issues the last week in October but we were trying not to panic and figure it out. During his recovery we had a couple of doctor appointments, along with an ER visit. We are just trying to get to the bottom of this. We are now at the point that we have no choice but to see a pediatric G I specialists. on another note, Kaleb's incision is completely healed and he has had no head pain or any symptoms regarding his chiari. The only problems Kaleb has been having, strictly has to do with his bowels only. We are now in the process of ruling different things out and and testing his poop as well. So far no infection in his intestines and everything is coming back negative. We are waiting on a couple more test, then it's off to see the gastrointestinal specialists. [More]A Special Thank You From Us
Dec 15, 2014 Please take a look at the video to view our special thank you. [More]A Special Thank You From Us
Dec 15, 2014 Please take a look at the video to view our special thank you. [More]Happy Thanksgiving!!
Nov 27, 2014 HAPPY THANKSGIVING!!!!! We hope you and your family have a wonderful Thanksgiving <3 We all have a lot to be THANKFUL and GRATEFUL for :)) God Bless and love to you all xoxo [More]Kaleb Update
Nov 23, 2014 Kaleb is doing great :) Looks like we can come home tomorrow!! [More]Kaleb UPDATE
Nov 21, 2014 Kaleb is still doing good :) At first he wasn't eating and then he upgraded from nibbles, to small bites, to eating his first meal tonight.:) We talked with the nurse today and as long as Kaleb is drinking, he's doing good. They said he may not feel like eating and where they operated on the brain, it can cause nausea. So he's doing pretty good overall :) [More]Brain surgery..... Who got Brain surgery?!?!?!?
Nov 20, 2014 Kaleb is doing outstanding :) We get to go home today but we have to stay close by for a few days ... [More]One day at a time....
Nov 19, 2014 Kaleb's surgery was a success! It was about five hours long and our baby fought hard for us again. Thank you everyone for all your well wishes and prayers. We couldn't of done this alone.... We thank God, our Lord Jesus and all of you, for ALL YOUR PRAYERS!!!! [More]Calling all PRAYER WARRIORS
Nov 16, 2014 Let the countdown begin....... Calling all prayer warriors.... [More]Don't mess with Texas!!
Nov 13, 2014 We all got here safe and sound:) Thank you for all your prayers for a safe travel <3 [More]THANK YOU!!!!!!
Nov 10, 2014We just wanted to say THANK YOU for all the LOVE and SUPPORT everyone has showed our family. Words cannot even express the emotions we were feeling when we saw so many people come to our son's fundraiser.
[More]The Surgery Date is Set ...
Oct 21, 2014 Please watch an informative video with details on Kaleb's upcoming surgery and fundraising effort information. [More]Brain surgery!?!?!
Oct 14, 2014Seeing those two words, we still can't believe it ourselves. We feel like we are in a bad dream that we are about to wake up from. We keep asking God, is this for real??? Do we really have to do this??? Is this all a figment of our imagination??? Can this be????
[More]Update from Texas: Please Pray!
Oct 3, 2014 We have gotten some news today that Kaleb will in fact need brain surgery. Please continue to pray for him, for us, our family as we work to process all this information. We will update later with the details. [More]Getting ready for Texas!!
Sep 29, 2014 Well.... We are pretty much all set for Texas!! We take off on the road for around one in the morning... We shall see if Kaleb enjoys road trips, lol :) [More]Back to Texas | Prayers for Kaleb!
Sep 26, 2014 We are getting ready to leave for Texas!!!! We take off on the road at 2am on Tuesday and hopefully arrive there Tuesday evening. Kaleb is all set for his appointments starting Thursday at 7am. It will be a very long day for us. We check-in at 7am and register him, then they are putting Kaleb under for his MRI around 8am. [More]August 15th 2014
Aug 15, 2014 Happy 2nd Birthday!!!! [More]Update: July 21st, 2014 ALL 4 ONE AND ONE 4 ALL
Jul 21, 2014ALL FOR ONE AND ONE FOR ALL!!!!!! Sorry We havn't updated in so long, I was having some problems with Kaleb's site. We are all good now :)
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May 13th, 2014: I just love this!
May 13, 2014 I think this quote is so awesome, I just had to share it!! [More]UDATE: May 6th, 2014
May 6, 2014 Kaleb just had his 132 appointment for a hearing test and then a follow up with his ENT. Kaleb did great during the hearing test! [More]UPDATE: MARCH 21ST, 2014 Kaleb's neuro appointment update
Mar 21, 2014 We got some GREAT news!!!! Kaleb just had his neuro developmental psychologist appointment and he is doing AWESOME! [More]UPDATE: MARCH 12TH, 2014
Mar 12, 2014 Alisha just told me today that she has been diagnosed with breast cancer. [More]UPDATE: MARCH 10TH, 2014 A MESSAGE FROM KALEB
Mar 10, 2014 Hi everyone, in case you didn't know today is JOESTRONG day!!!! [More]UPDATE: MARCH 6TH, 2014
Mar 6, 2014 Hi everyone, sorry we have written in so long. Kaleb is doing great, we had a couple bumps down the road during his recovery but he is doing good. [More]Kaleb's 5th surgery at Luries Childrens Hospital of Chicago on February 13 th....
Feb 13, 2014 Kaleb's surgery is scheduled for noon tomorrow and we have to have him there by 10:30 a.m.. Please keep Kaleb in your thoughts and prayers for tomorrow. We will keep everyone updated as to how everything goes. Thank you for thinking of him and for your prayers.[More]
UPDATE: FEBRUARY 4TH, 2014 Kaleb's 5th surgery.....
Feb 4, 2014 Hi everyone, sorry I haven't written in so long but things have been a little crazy. It is confirmed that Kaleb will be going in for surgery at Lurie Children's Hospital of Chicago for his 5th surgery. [More]UPDATE: JANUARY 2ND, 2014
Jan 2, 2014 Happy New Year everyone! We would be hoping it would be a new year free of surgeries, unfortunately not. [More]UPDATE: DECEMBER 17th, 2013
Dec 17, 2013 Sorry We didn't update right after Kaleb's doctor appointment. The one night Doctor appointment didn't go as planned. [More]UPDATE: DECEMBER 4TH, 2013
Dec 4, 2013 We are off to Dallas today for one of Kaleb's doctor appointments. [More]December 3rd, 2013
Dec 3, 2013 To our Heavenly Father, We THANK YOU for saving our son Kaleb on this very day last year. [More]FRIDAY NOVEMBER 29TH, A DAY THAT WE WILL ALWAYS REMEMBER...
Nov 29, 2013 Last year on this date, was Kaleb's first cranial vault surgery. [More]UPDATE: NOVEMBER 27TH, 2013
Nov 27, 2013 Kaleb had an appointment today to see his eye specialists and we got great news. [More]UPDATE: NOVEMBER 12TH, 2013
Nov 12, 2013 Kaleb's recovery is going great!!! We had a couple of hiccups during his incubation period, but other then that he is doing very well. [More]UPDATE: OCTOBER 23RD, 2013
Oct 23, 2013 Kaleb is finally fever free!!!!! YEAHHHH! He has been fever free since Sunday [More]OCTOBER 13TH, 2013 - WE ARE HOME!!
Oct 13, 2013 Kaleb did it!!! Our baby fought and fought hard for us... We got home yesterday evening and we couldn't be more excited and tired at the same time. [More]October 11th - 4th Surgery Update
Oct 11, 2013 Greetings to all you prayer warriors! My name is Lisa and I'm a friend of the family - Karrie asked me to provide the following update for everyone: [More]Thank you to all of those that sent in these pictures to show your Team Kaleb support today!
Oct 4, 2013 Check out all the pictures that we recieved for Team Kaleb support! [More]A BEAUTIFUL PRAYER FROM KAREN JESCHKE AND GOOD SAMARITAN UNITED METHODIST CHURCH...
Oct 3, 2013 A beautiful prayer for our son and friend Joe Clark..... [More]A SPECIAL MESSAGE FROM KALEB....
Oct 2, 2013 I have a new special friend that I would like to tell you all about, his name is Joe Clark. He came across my story and sent mommy and daddy a donation to help me out. [More]CALLING ALL ANGELS......OCTOBER 1ST 2013 Well the big day is almost here and we leave for Dallas tomorrow....
Oct 1, 2013 Please keep our little angel in your prayers... Our flight takes off about 1:15pm and we arrive in Dallas around 3:20pm. [More]UPDATE: September 25th, 2013 Fundraiser Event Update
Sep 25, 2013 Our fundraiser that we held on September 21st for Kaleb was a great success. We are so touched by all the people who came and showed their support on such short notice. [More]UPDATE: September 14th, 2013
Sep 14, 2013 We had the most AMAZING day today!!! Good friends of ours with the help of their awesome family and friends, put on the most glorious yard sale we have ever seen. They made up these beautiful flyers and put Kaleb's story out there for people to see [More]UPDATE: September 10th, 2013
Sep 10, 2013 We got some wonderful news yesterday!!! Kaleb finally graduated from physical therapy. [More]UPDATE: September 3rd, 2013
Sep 3, 2013 Well today we had to take Kaleb to a cardiologist because last week his pediatrician caught that Kaleb had developed a heart murmur. [More]We are scheduled for Kaleb's 4th surgery
Aug 6, 2013 Kaleb has to receive injection shots called Procrit once a week for 3 weeks before his surgery. [More]On February 22, 2013 Kaleb underwent his third surgery
Aug 3, 2013 An MRI showed that Kaleb’s brain went further into his spinal column and he needed a posterior fossa decompression. [More]Kaleb’s second surgery
Aug 2, 2013 Our brilliant neurosurgeon with the help of God saved our son’s life. We were told the last time they saw anything similar was about 25 years ago. [More]Kaleb’s first surgery
Aug 1, 2013 Kaleb's first surgery went well and he had no complications when he was under. When we saw him afterwards our hearts just broke as he laid there quietly with a whimper here and there. [More]
"God only gave you this life because he knew you were strong enough to live it"
"People are like stained glass windows. They all sparkle and shine when the sun is out. It is when the darkness sets in that HEROES are revealed, as their mesmerizing courage shines through from the light within" - Elizabeth Kubler-Ross
LOVE for Dallas!!!!
Our niece Haley next to Kaleb's heart on the wall at school