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Last year was a time of celebration. Kaija had just finished high school and was looking to pursue a career in Physical Therapy. She was blessed with an opportunity to attend Berry College (Rome, Georgia) and meet lots of new people who helped start her off strong toward her goals.
Throughout Kaija’s life, she has always prioritized having a can-do attitude. Making the right decisions has always been vital for Kaija to achieve success in her endeavors and her talents and skills have only been amplified with this mindset. On top of all of this, Kaija is smart, kind, a great friend, loves to be active (former gymnast) and is almost 19 years old.
Unfortunately, Kaija’s freshmen year was cut short. On October 18th, 2022, Kaija woke up to find that her right wrist had gone limp. First we did not think much about it, figuring that maybe she just slept wrong. In the next 48 hours, Kaija had the feeling of pins and needles going up her right arm and down her right leg, followed by shooting pains. She experienced tremendous weakness on the right side of her body. We advised her to go to her school’s Health Center. They immediately sent her to the ER, and Kaija was hospitalized with stroke-like symptoms. They did a CT Scan and MRI and it did not confirm a stroke. Then doctors tested her for different auto-immune diseases that could possibly mimic stroke-like symptoms. They did another CT Scan and MRI to check for lesions that could signal MS, but came back with nothing. At that point we decided to bring Kaija back home (Charlotte, NC) and seek medical help here. Shortly after that Kaija’s condition declined very rapidly. Soon she was not able to walk without assistance. We also discovered that there are not just problems with Kaija’s right arm and leg but also her right eye and her short term memory. This illness has affected the way her eye is able to track words on a page, making reading extremely hard. She also developed severe non-epileptic seizures that have tormented her multiple times a day ever since, sometimes for hours. Her entire right side is in constant pain, making even simple every day tasks impossible to complete. Thanks to her wonderful and very creative professors at Berry, Kaija was able to finish her first semester despite being on medical leave, but was not able to return to school for her next semester.
Even through many sessions of PT, OT, Speech therapy, Water Therapy, and Acupuncture, Kaija’s condition continued to decline. In March of 2023, Kaija lost ability to walk. This led to us meeting with 6 neurologists, going on multiple visits to Duke, 6 MRIs, 2 CT Scans, an EEG, EKG, EMG and 52 different blood tests. After all these trials, Kaija was diagnosed with Functional Neurological Disorder (FND), Functional Movement Disorder (FMD) and Complex Regional Pain Syndrome (CRPS). For those who are unaware of what FND is, you are not alone, we had never heard of it before either. FND, as a diagnosis, is a relatively new and misunderstood illness in the field of medicine. In Kaija’s case, FND translates to the mixing or disconnecting of signals from the brain to the rest of the body in cases of brain cognition, motor movement, and basic bodily function. The cause of this illness is unknown.
This is a pretty hefty diagnosis to be thrown upon a teenager, which is why we are looking for help. Help to bring us one step closer to getting Kaija on her feet again. In June of this year, we have found a clinic in Los Angeles, California that has accepted the challenge to put Kaija back in good health. This clinic has had strong reviews of success in the past for treating patients with FND and FMD. That has given us a glimmer of hope. We are scheduled to start at the clinic on September 11, 2023. The current estimate is that the treatment may take at least 4 months. Relocation and medical costs are very high. We would not be able to do it alone. Nothing about this journey has been easy, but we believe that with your help this could bring Kaija one step closer to walking again. We are very grateful if you would join us on this journey. All donations will be used to help Kaija recover.
Once again, thank you for taking the time to help bring us one step closer…
If you would like to follow our journey and receive updates please subscribe! (click the button below the Facebook, Twitter and Instagram icons)
Family and friends of Kaija Hite are raising money through the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Kaija has chosen to fundraise alongside Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
BACK HOME - Update 1
We have survived our first week back at home! A lot of adjustments, conquering fear, figuring out new normal(s), but above all we have enjoyed just being home. I am glad that before discharge we thought through different scenarios and put some action plans in place, and I believe we were able to avoid 3 ER trips already. There is no improvement in Kaija's physical condition, but mentally it has been easier at home to focus on something else than this sickness.
We got home right on time for Dave's Birthday. That was blessing in itself!! We were super excited to be together to celebrate Dave.
Kaija and her dad have spent countless hours designing Kaija's Space and it is coming together beautifully. They both are very creative and talented in interior design. They have also implemented some technology to give Kaija sense of independence. This has been the best distraction we could have asked for. Our new Handicap Ramp in the back of the house is also working beautifully. Thank you, Carmel Baptist Church!
Another project that Kaija has been working on (her mind and creativity never cease to amaze me) - for the last 8 months the only clothing that Kaija has been able to wear (due to Allodynia, severe neuropathic pain in her skin) is hospital gowns. We also discovered that there is not a big market of cute hospital gowns geared toward younger generation. When Kaija's good childhood friend and her mom (who is a very good seamstress) came for a visit Kaija had a proposition to start a new line of gowns. We will call this project - Love Over Limits (LOL Gowns).
There is one more project that we have been working on - Love Over Limits Lights (LOL Lights). Last December when we got admitted in the hospital in Los Angeles we spent the whole Christmas season there. In one of the update's I wrote: "Hospital stay during Holiday season can be quite depressing. Christmas cheer not always reaches the rooms of the patients. The other day when I stepped out to get some coffee from the cafeteria the hospital lobby was so beautifully decorated, but not all the patients can enjoy that beauty. It truly felt like a different world out there. But acts of simple kindness help Christmas Magic happen - one of the sweetest doctor's on Kaija's team brought few decorations for Kaija's room this morning. And let me tell you, a simple string of lights changes the whole atmosphere and lifts the spirit not only for us but for everyone who enters the room. Light has such power! (John 8:12)." That day we knew that we will want to pay it forward. We will be collecting battery powered string lights to send it to the hospitals (we will start with the ones we were admitted at) for those patients who will be staying in the hospital over Christmas. Stay tuned for more info on that. We would love for you to be part of it.
As you can see it has been a busy week!
As far as the next steps : this week and next we are doing some follow up appointments with our outpatient doctors. We also have some outpatient possibilities with Duke and Mayo, it just takes forever to get to see the right doctor. We are also exploring some maybe not so conventional medicine approach. We will see what works! Not having any improvement for this long is honestly very depressing and discouraging, but for some reason we are put on this journey and some of the doors God still keeps closed. All we can do is take one day at a time and walk it faithfully and we choose to focus on something else. We will choose Love Over Limits!
Thank you all for praying us through!
Hospital Again - Update 3
Today is Day 50 in the hospital. Referrals to the Mayo Clinic has been filled out by our doctor requesting a transfer. Please join us in prayer for open doors and for those who are reviewing Kaija's case, may we find favor in their eyes.
Last two weeks have been very hard. About 10 days ago doctors told us that this transfer to Mayo may take a while, so they wanted to see if it would be possible for us to go home for a little bit while we wait. They worked hard to put the plan in place with all the meds and nutrition and equipment. We as a family were hoping to be under one roof again. At one point we even had discharge papers in our hands and everything changed in a split second. And really since then we just have not had a good day - we are struggling to control the convulsing episodes, struggling to control the pain. Kaija still tries very hard to communicate but it has become harder and harder to understand.
I took this picture the other day (see below in Photo Albums) that breaks my heart to pieces. Kaija was in so much pain, crying , but she asked for a hug knowing that the hug (us touching her) will increase the pain, but she chose to endure the pain just to feel the hug.
This week seems to be total emotional roller coaster, we go from complete heartbreak to trying to celebrate Dave (his graduation is June 8th.) With everything going on Dave chose not to have graduation party (just family dinner), but if you feel led to send him a card or a video message, I know, it would greatly encourage him.
Thank you again for every prayer you pray for us, over us and on our behalf! We are forever grateful!
Hospital Again - Update 2
Day 26 in the hospital and our tests results came back! They were all Negative. In many other scenarios this would be a very good news, but for us it means we are staying in an "undiagnosed illness" category. There still is a possibility that this is an autoimmune condition with an unidentified marker. So, the hope is that the IVIG treatment that Kaija received possibly could work. The next two weeks will show if maybe one of those antibodies can turn things around. Meanwhile we also repeated some test for Lyme, Parasites, Heavy metals etc. and so far nothing.
This has been a very hard week. On Tuesday as a result of a very long convulsing episode Kaija has lost ability to freely speak. Once in a while she is able to say a word that we can understand, but mostly her words sound gibberish. We are beyond heartbroken to see her trapped inside her broken body.
Earlier this week as I was reading Jeremiah 29 I was always encouraged by God's promise in verse 11 "For I know the plans I have for you", says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." This time I noticed something that made me see this verse in a different light. This very often quoted verse and promise is accompanied by 70 years of captivity (verse 10). Captivity brings a lot of pain and suffering, taken freedoms away, longing for the life you once had. Kaija's sickness has brought us very similar emotions and every day reality . We can't escape it, take a vacation from it, or not think about it. All of a sudden this promise carries a lot of weight. Also, 70 years is a long time!!! It can be someone's life time or past their life time. Hmmm!
I don't doubt God's promise, I know He is able. I may not know or understand how He will end this captivity for us and restore our future and hope, but "Thus Far" He has undoubtedly been with us. As we gathered with elders to pray over Kaija we once again with prayer and petition with thanksgiving have asked God to lead us, to give us strength and extra faith on this journey of healing Kaija! And thank you all for being with us.
At the moment we are not sure what's next. Kaija's condition is quite "fragile", she may be ok one minute and we may need Rapid Response Team the next. We are just taking one day at a time right now.
As I am typing this we can observe Northern Lights "Auroras" here in Charlotte. Auroras are the result of disturbances in Earth's magnetosphere caused by the solar wind. Another beauty that comes out of the storm. :)
Hospital Again - Update 1
April 15th Kaija was admitted in the hospital again. Kaija started experiencing severe GI issues. She underwent couple procedures. Her gut is very sluggish, her colon is not working well, we needed to supplement some nourishment through the IV.
While in the hospital I came across an article about a family who was dealing with similar symptoms and similar trajectory of the illness. I contacted them to get all the details and the doctors here were willing to run the tests on Kaija to see if we are dealing with the same thing. Doctors told us that it may take a little while to get the results back (today has been day 12).
There is a quote that caught my eye today: "We are free to make beautiful, honest things right here in the waiting" Morgan Harper Nichols
Ahhh, I will be honest I am not very good with this waiting. I feel like my thoughts have been frozen, at times it is hard to breath under the weight of this waiting, I am scared to hear "Yes", but I am also afraid to hear "No, that's not it". Waiting is hard, no doubt about it.
But in the midst of this waiting God has given us beautiful moments - Kaija just lights up every room she is in, no matter if it's an ER or an ICU. We have met more wonderful and caring nurses and doctors who were willing to listen and explore, we have formed meaningful relationships with people God has put on our path.
And then our Dave, in the midst of heartache for what his sister is going through still managed to bring us beautiful moments to enjoy - he made Varsity Volleyball team, received Silver Key and Honorable Mention for his Poetry and Short Story from Scholastics, got inducted in Quill and Scroll Honor Society, got his work published with Young Writers USA and committed to University of Arts in Philadelphia to study Creative Writing.
Pain and beauty has been going hand and hand.
Thank you for praying us through this waiting process!
Home - Update 3.
One of the days I was dreading the most - came. Since we have been discharged from the hospital I was afraid of Kaija having a convulsing episode at home. No matter how many times we discussed that with multiple doctors, I felt like there just was not a good plan. Doctors had different opinions on what meds should or should not be given or what steps to take. A lot of the decision making was left up to us and selfishly I wished I would never need to make these decisions or find out how this day would play out. Unfortunately, Friday afternoon Kaija became unresponsive and convulsions began. After the first dose of meds paramedics were not able to stop the convulsions and we needed to be taken to an ER. After 1hr45min and 3 more doses of meds convulsions stopped. We were blessed to have a compassionate doctor who listened to our complex story and helped the best he could. After 12 hours in ER Kaija's condition was stable enough for us to come back home. We survived the day I dreaded so much.
When I am in the car I almost always listen to music. And once in awhile there is a song that just captures my heart. The week leading to this dreaded day the song that stopped me in my tracks was "Counting My Blessings" by Seph Schlueter. Our family right now live in the season when God's goodness and faithfulness may not be that obvious when you look in the big picture, but just like this song says: "The more that I look in the details, the more of your goodness I find." While sitting in the ER I started to make a list of blessings in all different shapes and sizes that we have experienced and received. You all have been hands and feet of Jesus and shoulders to lean on for months and months for my entire family. Here we go...
* Before Kaija's sickness I was repainting the interior of our house, but I wasn't able to finish it once the sickness started. Before we brought Kaija back home, the sweetest people came to finish my project;
*Few of our kitchen appliances were not working and few of you went above and beyond, many extra miles to make my kitchen fully working again;
* With all the construction and renovation going on to make our house fully accessible, some of you have graciously given your time to help us pick the tile or fix our electrical outlets;
* in two days another handicap ramp was built, so our house would be completely accessible on both levels;
* some of you have helped me move some plants around in our back yard since I have not had much time to do any work there or taken care of my plants while we were in CA;
* some of you have made some extra stops by coffee shop just to bring me my favorite coffee or Kaija some sweet tea (and Dave some Chocolate milk :) )
* some of you have gone out of your way to stop by our favorite places out of town to bring us some souvenirs since we can't travel right now;
* some of you have spent hours helping me research and make phone calls, sent books and articles about possible next steps or things to try;
* delicious dinners and lunches that we have enjoyed and made our days a little easier;
* grocery store runs;
* Cards, texts, messages and phone calls filled with encouragement, strength, love and hope;
* Gift cards to make our daily life a little easier;
* Countless prayers prayed on our behalf, for us and over us;
* some of you have just sat with me and let me cry;
* some of you have sent me little jokes or funny videos to make me smile;
*Few of Kaija's friends have driven for hours just to come and see her and sit with her;
* some of you have gotten up at 4am just to come and sit with Kaija while she was in the hospital so I can take Dave to school;
* Since Kaija loves flowers, we have received so many beautiful flowers to brighten even the gloomiest day;
* One of my dear friends to help me with my healthy eating habits (and to make sure I keep up the good vegetable intake) has been making me fresh gazpacho every week;
* some of you have made us beautiful calligraphy signs, bracelets, blankets with reminders of God's love and goodness;
* and did I mention prayer?? If there is one name that has been brought before the throne day in and day out, it's Kaija!!
* shortly after coming home from the ER I had my favorite cake on my kitchen counter from the sweetest neighbors just to make it all a little better;
So, there can be calm in the storm, beauty in ashes and good in the hard.
"Father, on this side of Heaven ... I will keep counting my Blessings, knowing I can't count that high! One, two, three .... up to infinity!"
https://youtu.be/aZjWYgq9QfM
There is no place like Home and we were very grateful to make it home February 26th. These first two weeks went by fast and slow at the same time. I like to count my blessings and I cherish every moment we can be together as a family under one roof, I'm savoring every little moment of "normal" like taking Dave to school, or cooking dinner, or walking Milo. But these first two weeks also has been filled with a lot of adjustments, and figuring out how our 'new normal" will look like. I feel like I needed to come up with new definitions for "good days" and maybe not so good ones. It's been a lot of good and hard at the same time.
As far as Kaija's condition right now - we still are dealing with extremely high levels of pain, no movement neck down, tolerating food (and feed) is still the problem, but we are doing better than in the hospital (we will take every little win we can get), her joints are dislocating easily, making moving her body very challenging. We are still waiting on results of genetic testing and we keep researching and exploring few outpatient options.
Being home finally gave me some time to go through all the mail and packages and I have filled 3 boxes of sweetest notes from so many of you. For me these boxes represent strength and encouragement, hope and prayers lifted on our behalf, love and belonging to the best community from near and far! Thank you and Thank you again for walking this journey with us.
After 88 days in hospitals we are finally scheduled to go HOME on Monday! I am holding my breath and praying that all would go well and it would happen as planned. To have my family under one roof after 5 and a half months fills my heart with joy beyond words.
I feel like we are starting another new chapter. Kaija's condition is not necessarily better, but after a lot of discussion we have all come to agreement that the best place for Kaija emotionally right now would be home. This also may give us few more outpatient options to explore. We will keep researching and digging until we find the answers.
Thank you so much for continues prayers! You all have been The Best Army to have on our side to fight this battle!!
This update is so over do, I am so sorry! Last 3 weeks has been pretty overwhelming. In a nutshell on January 23rd after another convulsing episode we ended up in the ER and 48 hrs in the ICU, then back to to Continued Care Hospital and 10 days later Kaija had 6 convulsing episodes in 72 hour period, that put us in ER again, this time we got transferred to CMC Main. Today is our day 8 in the hospital here. Unfortunately, after another set of testing we do not have any leads of what is causing all this. We are having a setback with the feeding tube and nutrition again (we are barely getting 200 calories again). There is a lot to take in and process, and keep persevering, and getting up each day and trying again. I would be lying if I said we are not tired and weary. We are! But we are so grateful for HOPE that is new every morning, we are grateful for STRENGTH, that sometimes is just enough to get us through our day. Thank you for praying us through this. Thank you to all of you who gathered at Carmel Church on Sunday for a prayer time for Kaija, thank you to all of you who are tirelessly lifting us up in prayer day after day.
Below I attached one of the stories I shared with one of the prayer groups. From the bottom of my heart Thank you for walking this road with us.
Throughout this journey I have started a list of different lessons I have learned walking through this valley. I just wanted to share one, how sometimes the smallest things can make the biggest difference.
On December 2nd when Kaija got in the hospital in Los Angeles, after convulsions stopped and her condition was stabilized Kaija asked her nurse what was her name and then she thanked her by name for helping her. A little later another nurse came in and Kaija did the same thing. I told Kaija that was very sweet of her to thank the nurse. And then Kaija told me that: “Right now there are many things in her life that she can’t control, many freedoms and abilities have been taken away from her, but there is still one that she can control and it is how she treats other people”. And since then Kaija has asked every nurse, and every doctor, every person who brings her lunch tray or takes her for a scan for their name and have thanked them for helping her. And if Kaija found out that English was not their first language then for next time with the little help of google or a friend, Kaija learned a phrase or greeting in their native language.
Have this little act of kindness brought us closer to Kaija’s diagnoses or treatment plan? No, not necessarily. But has it changed our perspective on this journey? 100% it has! All of a sudden the final destination of this journey is not the most important thing… the journey is. Each and every day Kaija makes a difference in someone’s day, she lets them know that they are seen and appreciated and that is what makes this world a better place. It has opened many doors to share stories and hear their stories. No matter our circumstances, with or without health Lord has asked us to “act justly and to love mercy and to walk humbly with our God” Micah 6:8 Each and every day I selfishly pray for healing, for Kaija to walk again or be able to move her arms, for answers and correct diagnoses, for less pain, but I also pray that faithfully and obediently we would fulfill the purpose for each day no matter how small.
Many doctors have told us that Kaija’s condition does not fit any box, there has been many questions around her diagnosis, is it correct or not, there is a lot of uncertainty about next steps or treatments.
So, in the face of a nameless sickness, we are learning everyone else’s name. To me that seems like a fingerprint of God.
Thank you for praying us through!
Dace
For the last 13 Days we have enjoyed seeing and being able to hug our friends and family. It is so good to be home! Even though I still spend most of my days in the hospital with Kaija, it is so good to be able to take Dave to school or pick him up, or run home to walk Milo. It makes such a difference that we are able to see each other and spend time together, even if it is in the hospital.
This past Tuesday Kaija underwent a procedure to extend her G tube into a GJ tube. We are hoping this will help her tolerate better the feed. It is still early to say if the procedure has helped us or not.
On Thursday Kaija experienced another convulsing episode. These episodes are scary and my biggest prayer is that we would be able to figure out what is causing them.
Our plan still is to bring Kaija home as soon as we know she can tolerate the feeding tube.
We do need to make some home renovations to make a comfortable place for Kaija that can fit a hospital bed and all the other equipment she needs. We have met with the contractor and we are working on multiple projects at the same time.
I appreciate all the meals, they do save our day! Thank you so much!
We have also started the disability process and we keep exploring options what to do from here.
On one of my morning drives to take Dave to school I heard a song on a radio ("Don't Stop Praying" by Matthew West) I feel like that song was written for me, for such a time as this, the lyrics have touched all the strings in my heart and it is also my plea to you: "Don't stop praying, Don't stop calling on Jesus Name, keep on pounding on Heaven's door...."
PS. I also wanted to wish my mom Happy Birthday today! She is turning 93 today. And she is one of my biggest prayer warriors. For last 16 months she has tirelessly prayed for her granddaughter who has been named after her. "Kaija" is my mom's nickname. I love you, Mom, and thank you for always praying!
Happy New Year!!
We made it to Charlotte today!!! Our Insurance company together with Medway Air organized another medical flight for us. We had an absolute Dream Team. The medical team (Ricky and Ali) were amazing. Near Nashville Kaija did go into a convulsing episode, but they were able to stop the convulsions while up in the air and our pilots Luke and Shawn were able to bring us back home.
Kaija and I currently are at the Carolinas Continued Care Hospital in Pineville. We were welcomed by the sweetest nurses again! :)
Our hospital window faces Carowinds and I was able to finish our year and welcome the New one by watching beautiful display of Fireworks. What a year we had!!! To say that 2023 was a crazy year for us almost feels like an understatement. We walked through a lot of valleys of pain and suffering, and disappointment. But who knew that right in those valleys we met the nicest, the most caring people and we met all of you. And each one of you have helped us in some way to go through this valley. I can't be more grateful!!!
Every New Year I pick a word to focus on, to study it, to implement it into my life. My word for 2023 was "to be". To be more present, to be more available, to be more in a moment, to BE more than Do more, to be what God called me to be. Quite a year to practice it. :)
Earlier today as I was reading 1 Samuel 7 there was a word that jumped out to me and I chose that to be my word for 2024 - "thus far". "Thus far" indicates that someone has come a long road, it points in the direction of the past. But these words also point forward. These words tell us that we have not yet come to the end of the road, that there still is some distance for us to travel. I can't relate more! "Thus far the Lord has helped us" (1 Samuel 7:12)
Before Kaija drifted to sleep after exhausting but exciting day she said that her word for 2024 will be "strength" and she referenced the quote "you never know how strong you are, until being strong is the only choice you have."
I wish you all to start this new year by allowing the Lord to write another chapter of your story!
Just to clarify the previous update for some reason did not post till today. The Emergency landing happened on December 29th.
Update - Emergency landing and we are in another ER. Still in California. Kaija had another convulsing episode, it was too dangerous to stay up in the air. We were so hopeful to be home soon. Not sure yet of the next steps.
Quick update - Today big prayers were answered, Kaija got approved for Medical Flight and Carolina Continued Care Hospital agreed to be a receiving facility. We are so grateful!!! The transfer is scheduled for Tuesday, December 26th.
David and Dave arrived today and we are so grateful for that too!! Christmas will look very different this year, but honestly, being together is all we need right now. :)
Thank you for praying on our behalf. And please continue, we will need all the prayers we can get for our journey back home. We will be closing this chapter and opening brand new. I know, God is not done with us! Thank you for walking along side us!
Week 14 - After 18 days in the hospital we have exhausted every test and scan that hospital can offer and unfortunately we still don't know the cause of Kaija's condition. At this point we are looking for a way to return back home to NC. We are currently working with insurance and hospital case workers to arrange a medical flight and find a Continued Care Facility near Charlotte. After that our goal is to bring Kaija back home with Home Care. Prayers are very appreciated since there is a lot of doors that needs to open. Prayers also for Kaija to be able to endure all these transfers with out any set backs.
We also have had issues with Kaija's feeding tube. Her body is not tolerating very well the feed. We are trying to find right combination.
David and Dave are flying in today. We are very excited about that.
In spite of all the disappointments and chaos that follows through out our journey, we stand amazed of all the wonderful relationships we have made with our medical staff and nurses and everyone who has become part of Kaija's team. Kaija said: "I have felt so loved by each and everyone on my team and I will never forget the kindness they have showed me while taking such a good care of me." As Kaija was able to share her journey with so many, we were fortunate to hear their journey that brought them here to serve in this capacity. This experience has helped us bond over tough circumstances and situations, has showed us that there is strength in being vulnerable, and it keeps Hope alive. Our journey is not over.
Christmas decor has expended in Kaija's hospital room thanks to kindness of sweet friends! :)
Week 13 - Midweek update - After a lot of discussion with multiple doctors we have decided to proceed with GI tube. Kaija's body has reached the state of malnutrition, but the process of eating is causing additional pain and takes a lot of energy. We just can't catch up. She will undergo this procedure tomorrow. They will put her under general anesthesia so they can do endoscopy and lumbar puncture as well. Please pray for smooth procedures.
Hospital stay during Holiday season can be quite depressing. Christmas cheer not always reaches the rooms of the patients. The other day when I stepped out to get some coffee from the cafeteria the hospital lobby was so beautifully decorated, but not all the patients can enjoy that beauty. It truly felt like a different world out there. But acts of simple kindness help Christmas Magic happen - one of the sweetest doctor's on Kaija's team brought few decorations for Kaija's room this morning. And let me tell you, a simple string of lights changes the whole atmosphere and lifts the spirit not only for us but for every one who enters the room. Light has such power! (John 8:12)
Big Thank you to my family in Latvia for sending us latvian chocolate and gingerbread cookies. We were able to make over 30 goodie bags to share with our nurses and doctors, and sweet people who clean our room, and bring our food and take Kaija to scans.
We had another sweet therapy dog "Murphy" come to give some kisses to Kaija and friends from Re+Active to stop by and give hugs. Your prayers for some smiles for Kaija definitely got answered!
Thank you so much for being our Village. Extra miles you all have walked on our behalf in all different ways are so so so appreciated. My heart is bursting from gratefulness!
Week 12 - We have been in the hospital now for a week. Dr. Goodglick has been amazing - caring and compassionate. She has spent many hours researching, reaching out to other doctors and hospitals, running every test imaginable. There still is a lot of mystery around Kaija's condition. It just does not fit any box, her blood work is very inconclusive, but her body is definitely declining. We just can't find the cause. They did find couple infections that they are treating now, but those may not be the main contributors in overall condition. The spine MRI also had an accidental find that will need to be discussed with neurosurgeon, but they don't think that that is the cause either. Still a lot of questions remain.
This week we have wiped a lot of tears and have just held hands. The Hope has felt so distant, and yet.... in those darkest moments we have had some sweetest nurses come in, the therapy dog "Pep" came for a visit, or just a ray of sunshine peeked through the window.
Yesterday Kaija and I were talking and remembering a 5K we ran together. The course was very hilly and very difficult. I knew there was not much longer to go, but the finish line was not in our sight either, to encourage Kaija and myself I kept saying "the finish line must be just around the corner". Five corners later we were so exhausted, with no strength left, and no desire to try to finish the race, somehow we managed to push and pull each other to cross that finish line.
This week has really showed how exhausted we are physically, mentally and emotionally. I Hope in the Lord that our strength will be renewed (Isaiah 40:31).
Few prayer requests: Please pray that Kaija's appetite will increase and nausea decrease, otherwise feeding tube is next for us; Please pray that ketamine infusions or steroid treatment, or God himself would lessen the pain; Please pray for moments that would make Kaija smile.
So grateful for all of you!
Week 11- just a quick update, we are actually in the hospital with Kaija. Last night she went into one of those convulsing non-epileptic seizure episodes. Since last episode left such a harsh aftermath (not being able to hold her head and move her left side) we needed to be rushed to the hospital this time. After a lot of meds 2hr 30 minutes later they were able to stop the convulsions. Right now they are running labs and doing some scans. Her blood pressure and heart rate are finally stabilized too. We had a rough morning with that.
Week 10 - "In a full heart there is room for everything.... " (Antonio Porchia)
The week 10 was filled with excitement and joy filled greetings, laughter and heartfelt conversations, games, walks and wonderful food.
We are so grateful to Ashley and Paul for opening their house to us. Being together was the greatest gift. In my heart this Thanksgiving reached a different level of gratitude, the one not of the lips, but of the soul. The gratitude that sees beyond circumstances, challenges and suffering. Gratitude that heals the heart and expands the mind.
It was very sad to let our guys get back on the plane.
We are starting the week out with Kaija having very high levels of pain and no energy. We could not make it to clinic in person, we are thankful for technology. We have few appointments this week to sit down with Kaija's team to decide on next steps.
Prayers are very appreciated!! Thank you for your continuous support, encouragement and every step you walk alongside us!
Week 9 - As we enter the week of Thanksgiving, I just wanted to stop and say "Thank You". I don't think there is a word wide and deep that would hold all my gratitude that I have in my heart for all of you - the countless meals for my guys, sweet texts and songs to keep going, for patiently listening and letting me vent, for jumping in and taking care of Milo (who I miss terribly), every comment and every message has been like a fresh breeze to my soul, and countless prayers for my sweet girl around the clock, around the world! How could I ever Thank You all enough??!!
We did get the evaluation done on Thursday, but we are still waiting to hear on the next step. By far waiting is the most difficult thing when it comes to health, results and appointments. Over the weekend we also noticed that there is a slight decline in her left arm and leg (from the little movement she was able to do, we have taken few steps back). It is heartbreaking and frustrating to watch that.
But despite everything that has gone wrong, we are counting hours and minutes and letting our hearts be filled with excitement to see Dave and David and have few days with them.
With heartfelt Thank you, we wish you all Happy Thanksgiving!
Week 8 - Most of you know that I am from Latvia, so my kids are 50% Latvians. For last 21 years living here in USA I have tried to incorporate few Latvian traditions in our family life. And one of those are celebrating your "Name Day". In Latvia each name is listed in the calendar, for example, November 12th has two names Kaija and Kornelija (see picture below). So, every year November 12th we celebrate Kaija's name day. The difference between celebration of your Birthday and Name day is that for your Birthday you normally invite people, but since your Name day is listed in the calendar and everybody knows it's your special day, so anybody can show up for the party. :)
One day at the clinic this topic about special celebrations came up and we shared about Name Days. So, today on Kaija's Name Day two of the sweetest people from the clinic showed up at our place to celebrate her special day! That filled our hearts with pure joy!!!
All of you have been so kind to us with lifting us up in prayer, with texts and calls, and messages, and packages. It has encouraged us more than I can express in words. Thank you so much for not growing tired on this long journey of ours (I would not blame you if you would), but your prayers, encouragement and support helps us keep going, that's for sure!
After our big setback Kaija has reach somewhat plateau. This week we did not see much of improvement in her movement. From one side it's discouraging, from other side it has given us a little break to figure out how to do necessities of everyday life (from brushing teeth and washing face to how to get in the car etc.)
On Wednesday we are going to see a doctor to check her neck. We are hoping to get referrals to repeat some scans. The team at the clinic has invited another doctor from San Francisco and another team in San Diego to look over Kaija's case. We are praying that these brilliant minds would see something, notice something, have an idea of a next step.
We also finished our snow globe project. We hope they will bring as much joy to others as they brought to us making them. It was a great therapy for sure!
And only 10 more days left till Dave and David will arrive to spend few days with us!! We can't wait!!
Week 7 - Have you ever traveled an unlikely road? I remember Kaija sharing this story with me while she was still at Berry college last year, she participated in this art competition and needed to go photograph this barn. As she followed the directions, she needed to take many little side roads with twists and turns, leading her deeper in the woods, questioning can there really be something good at the end of this road?
Our journey seems just like it. On Tuesday morning we got a report from the clinic about the latest testing and there were many positive things, like her sensory training has improved, her cognitive training has made big progress, they were getting ready to switch from graded sensory exposure to graded motor exposure. We are still far from walking, but there were lot of boxes checked off what needs to happen before that. A lot of puzzle pieces seemed to be put in correct places. We got to the clinic excited and ready to work. For the first time it felt like we have turned the corner. And then while at the clinic Kaija had the biggest seizure she has ever had leaving her completely bedridden. She couldn't move most of her left side either, could barely wiggle her fingers and toes on left arm and foot, could not hold her head up. It felt like the big truck just hit us and knocked us completely down. Numb, confused, devastated , hurt, shattered, hard to breath are just a few adjectives that describe how I felt. This is very unlikely road and it screams the question: "Can there really be something good at the end of this road?"
And then I remembered the quote from Coach Vince Lombardi: "It does not matter how many times you get knocked down, but how many times you get up."
So we have spent last few days working hard on restoring movement in the left side of the body. Here is our progress :
Holding head up - we went from not being able to do it at all to 5-7 seconds;
Only wiggle fingers on the left hand to can bend the wrist and little bit of elbow (still working on moving the shoulder)
Can do slight movement with the left leg side to side, can't lift it up yet.
Can't hold the spoon yet, but if I put the piece of food to hold in her fingers, she can manage to get it in her mouth.
Sometimes we must accept the situation and be determined to make the best of it. Worrying over what we have lost or what has been taken from us will not make things better but will only prevent us from improving what remains (preaching to myself right now). And that is how I believe God will give us "songs in the night" (Job 35:10) and will turn our "midnight into dawn" (Amos 5:8)
We ended today with ordering a poster for Kaija to put near her bed, it's from Winnie the Pooh (one of my favorite children's books) "You are braver than you believe, stronger than you seem and smarter than you think."
Week 6 - When I asked Kaija, "How would you describe this week?" Kaija said: "The theme of this week could have been "Deep and good, and deep and difficult conversations"." A lot of mental and emotional stuff to process as we are trying to understand this sickness, trying to make sense of it, trying to find the ways and strategies that would help. This part of the journey is hard to describe. This is a very needed step, but it weighs heavy. While our minds and hearts are trying to sort out and work through all the heavy stuff, we decided to focus on something else for a moment. How about snow globes!!
In my last post I mentioned that we volunteered to help the clinic with their Holiday Fundraiser and make snow globes. Well, Kaija and I have never made snow globes before. Yes, and this seemed like a perfect timing to jump into something we have never done before. After consulting Google and YouTube we gave it a try. Our first two were complete fail and for a second or two... we regretted this whole idea ... but then we tried again... and this time it was not a complete fail. (You can check few pictures in the photo album below.) They are not completely finished (they are missing base ribbons), but it gives you an idea. After making these three Kaija said: "I am so glad we persevered!" This whole process reminds me so much of our life right now. Our lives right now are stuck in a moment, very shaken up, with quite a blizzard going on, but there is hope that the flakes will settle and at some point will reveal the beauty of the scenery and we will be able to say: "I'm so glad we persevered!"
P.S. We did not reach the goal with swallowing, the chicken has been pushed to next week, but in last two weeks Kaija only needed to take nausea medicine once. You win some and you loose some.
Week 5 - I feel like we had a full week. A lot of hard work and effort was put in by everybody. Kaija's doctors have adjusted her meds again. Kaija now can fall a sleep a little easier, to stay a sleep is still a challenge. We will see how this adjustment will work.
Kaija's therapists created a schedule how to go from liquids to more solid food. Although it was not easy, Kaija did keep up with the schedule. Yeah! We are hoping she will be able to eat some chicken by the end of next week.
During Kaija's OT session they created "WINS" jar. Every win, no matter how big or small, counts. (Check out the pictures below in Photo Albums). I don't know if we can say that we have turned the corner, but maybe we have just a little bit peeked around the corner. :)
Emotionally this week was hard because October 18th was 1 year anniversary from that morning when Kaija woke up with the limp wrist. It has stirred up wide range of emotions.
Team at the clinic has also involved Kaija into planning a wonderful Holiday Fundraiser. That has given her an opportunity to use her creativity. And oh boy, she is creative! (Pictures of finished products will come later). Thinking about others and looking beyond your circumstances is the positive therapy in itself.
We finished our Friday with a little time on the roof top, sipping ginger tea and enjoying a beautiful sunset. We may of over did it a little bit, we taking slow this weekend.
This week was filled with a little bit of everything!
Week 4 - Our week started out with the great day at the clinic on Monday and a terrible seizure that night. The rest of the week was filled with lots of meetings and discussions with doctors and therapists, exploring a possibility for an inpatient treatment. Unfortunately, there is not much out there as a variety of treatments. So, for right now we will stay where we are. Therapists here have adjusted their plan, medication has been adjusted again. We are ready for another week of trial.
After the last seizure Kaija is experiencing some difficulty with swallowing. Eating was already hard, this makes it even more challenging. Please pray that would improve and we would turn the corner.
Below I posted an essay Dave wrote. I hope you can hear his heart and see his view of what his sister is going through. We are so grateful we are not walking this alone.
I have trouble figuring out where to start when it comes to this story. It’s a story based on pain and suffering, a story that haunts my dreams and gives me reason to forfeit. For most people, family is the most important thing. There isn’t much you can do without them. They care for you when you’re sick, they laugh to make you happy, but most importantly, they love you. And that’s what makes my story so complicated, because why is it that sometimes you can barely do one of these things? Why is it possible that things become so strained that it’s almost evil to laugh in front of those special people? I can’t make sense of it all. With all of these questions roaring through my head, there is still one thing that can constantly be heard above the rest: What is FND? According to a variety of sources which range from google to medical experts, FND, or, more accurately, Functional Neurological Disorder, translates to the mixing or disconnecting of signals from the brain to the rest of the body in cases of brain cognition, motor movement, and basic bodily function. This description holds little merit though because none of it truly makes sense. There should be more. More than just a shaky definition that I conjured in my head. Yet there is none. Too little is really known about FND or how it functions. The only thing we really know for certain is that it comes from out of nowhere and there is no real cure. Its invisible vice grasps the body hard enough to feel your soul. After a period of time, you are no longer separated from the acidic disease. One and the same, you live in twisted harmony, cursed to carry a floundering parasite for futures untold. To carry on seems impossible and yet, I know someone who has defied these unfeasible odds. My sister, Kaija, freshman in college, was unlucky enough to be diagnosed with this terrifying illness. Nothing could have prepared me for the year that was to follow. Even now, with experience under my belt, I have no idea what it is that plagues her each and every day. On November 18, 2022, my sister woke up in her college dorm with a limp wrist. As the days went on, her wrist would not return to normal and a tingling sensation began to encompass her entire right arm. Debilitating pain kept her on her toes until it finally became too much. She ended up going to the campus doctor who immediately referred her to the emergency room. Never having been away from home in this situation before, my sister called my mom to join her. Six and a half hours later, my mom reached the campus of Berry College and took my sister to the nearest hospital. It was at this point when they realized they were treading in unfamiliar territory. SHHHH! THUD! SHHH! THUD! The sound echoes between my ears and creates a rhythm compared only with the blaring dominance of suffocating helplessness. My sister can no longer walk without support from someone else. Her gait is uneven, her stride like something out of the Walking Dead. My arm carefully cradles her right arm as we travel to the distant living room. The concern on my face deepens as I see the repeated grimaces from her unyielding pain. The pads of my fingers slide ever so gently to her shifting steps, but even that sends fiery tendrils of agony up her crooked shoulder socket. Her CRPS leaves one eye open at all times, always watching, always waiting. Never am I able to catch it by surprise for it can see one step ahead in rhythm to the endless lull of forever. We finally make it to the couch and she collapses in one loaded breath. She writhes in discomfort as she reaches and adjusts the crooked angle of her right arm. After that, she closes her eyes and waits for the piercing waves of strain to let up just a little. Enough so that she doesn’t have to bite her lip to prevent a gut-wrenching scream. RRRRMMM! RRRRMMM! grumbles the worn tread of a wheelchair. My sister is confined to the pitiful beast without the ability to move her right leg. This new symptom has followed months of absent seizures and little sleep. She is stuck in her bed all day and has nothing but the voices of reality tv characters to keep her sane. The only thing I’m left to do is talk to her. Listen to the labored sighs and rustle of blankets as she tries to recount the events of her day. I laugh in all the right places, say words of encouragement when needed, but none of this makes
me feel less on edge. No one can truly know her suffering; the only thing we’re good for is adding to her invisible torture. I stand up and leave the room, no longer able to take in this stranger in my sister’s bed. These roadblocks have no doubt caused unrest. However, it has brought some good to light. My family is more connected now than they’ve ever been before. We take turns providing what we can to my sister’s secluded new world. I am the designated wheelchair pusher; my control grows more and more with each passing trip to the bathroom. I have mastered the art of turning and backing up and rolling smoothly down the ramp at the front of our house. Syncing her transfers between seats to the beat of my heart, so that no matter what happens we will always be connected. Yet even with these small bright spots, I can’t help but feel inconsequential; like my love is not enough. I’ve learned that love doesn’t necessarily fix things. You can’t project your laughs into medicine or hugs into bandages. Rarely can you even crack a smile. This is the fact that stings the most. The fact that I will never be completely qualified to provide care for my sister’s condition. I’ve outgrown the belief that time will change things. There just isn’t enough of it to go around. So no longer do I have time to dwell on the fairness of life and the little nuances that come with FND. It can always be worse, but it can always be better too. Whether good fortune will ever be tied to her loose ends is yet to be seen, but I must keep faith that change will balance out the aching. For even if family cannot provide care in sickness, laughter in happiness, or love in the most trying of times, it still holds more value than moving through these riptides all alone.
Week 3 - First, I would like to give a big shout out to Re+Active Therapy and Wellness Team. They create such an inviting atmosphere, they go extra miles to get to know their patients and work with them tirelessly to find what works in their condition. We are blessed to have found team like this.
With FND (Functional Neurological Disorder) there is a lot of trial and error you go through to find what works for each individual. And Kaija's case is not the easiest to break.
We started our week on a good note - mentally Kaija enjoyed everything she did and was working on with her therapists (this little positive step we are celebrating), physically it still is extremely hard and challenging, and pain is still the issue. Second half of the week was more challenging with extreme weakness and seizures. The window when Kaija feels the most energy is getting shorter each week. We do understand, we have not turned the corner yet!
Kaija's medication got adjusted and we are giving it another week a try and adding another one mid-week. We are glad we have something else to try.
On one of my runs this week I was listening to some podcasts from other survivors and one said: "Don't you want to see what happens when you don't give up??" Oh, how I want to see what happens. That gave me new surge of energy to run another mile.
The couple we are staying with host Bible study every Tuesday and one of the verses we were discussing this week was from Romans 5:3-5 "...Suffering produces perseverance, perseverance , character and character , hope. And Hope does not put us to shame." I feel this verse to the core.
The pain doctors also connected me with the parent support group for those who's kids suffer with pain. It was so good to connect with other parents on the same journey.
So, our week was filled with ups and downs and encouragement sprinkled through! We are pressing on unto week 4.
Week 2 of treatment is done!
This week was like a roller coaster ride (I am not big fan of those). We were expecting the medication to maybe kick in and do it's job (less pain more sleep). Well, it didn't quite go that way. At the moment it looks like Kaija's body is rejecting the medicine and going completely opposite direction - more pain and less sleep. Even during the therapy the PT and OT needed to scratch some of the strategies because Kaija's nervous system is in a state where it sees everything as "danger" producing extremely high levels of pain. So, I'm not going to lie, it was not the most encouraging week treatment wise, but then again.....there is more to the day than just our circumstances we find ourselves in.
This morning Kaija's pain levels were still high. We were somewhat dragging our feet to go to the clinic. We got there and Taylor Swift music was playing through out the clinic (Kaija's therapists knew it was Kaija's favorite). It immediately lifted our spirits. The PT came to waiting room to get Kaija and she said: "today we have one goal and one goal only for you, Kaija, to have fun." As I was sitting in the waiting room, I heard a lot of laughter and cheerful chatter (that was music to my ears). But what warmed my heart the most was how intentional the Therapists were to brighten Kaija's day! She came out exhausted, still in pain, but happy in heart!
There is a painting in the clinic that says: "May you approach each new day with Gratitude for another day to pursue the new beginnings that are calling you."
Each day can be a new beginning. There really is more to our day than just our circumstances.
This week we smiled big when we got two surprise packages from sweet friends, when we heard story that there is a count down calendar on someone's wall for our home coming. You all have been The Best Warrior Team to have on our side. Each prayer and thought gives us energy to keep going. Thank you for helping us fight this battle.
I also wanted to say "Thank you" to all who have supported us financially and made this treatment option possible for us.
Also "Thank you" to all who have provided meals and still are providing meals for our guys back home!!
Thank you so much!
Please keep praying that the medicine would kick in and do its job.
This was our first full week of treatment here in LA. This week was filled with a lot of assessments and observation, going over medical history, reviewing scans, answering many questions. Kaija and I feel good about the therapists and two doctors from the pain clinic who will be working with Kaija.
As the step one, they started Kaija on the medication to help fix her sleep. Due to severe pain with Complex Regional Pain Syndrome (CRPS) Kaija developed insomnia. For last nine months she was not able to fall asleep and stay asleep. Big Hope this will help.
We do understand there is no quick fix for this, but we are thankful that we have a team who is helping us think and find solutions. Patience and Perseverance are two things we need the most right now.
We are blessed to have wonderful people we are staying with. We could not have asked for more perfect location. Kaija said one thing she likes here in LA is weather. It's been wonderful, not too hot and not too cold. For me West LA feels a lot like Riga, Latvia where I am from (except for gorgeous, tall palm trees, I absolutely love here!!). The one thing that puts the biggest smile on Kaija's face is her friends checking in on her. :)
Thank you all so much for sweet notes and messages, calls and prayers. We read them all and it all helps us to keep going. Thank you!
Today was The Big Day! Our first day at the Re+Active Clininc went well. We met with one of the five therapists who will be working with Kaija. It was great to hear that this morning all five of them met as a team to discuss Kaija's case and she was excited to meet Kaija first. She did some assessments, observations, we went through medical history. Kaija's ability to sit in the upright position has declined since we are here. We are so glad to have our new wheelchair and I can recline her, otherwise transporting would be really hard. But we are very hopeful. We saw about 7 other patients at the clinic, all different ages, but a lot of similar symptoms.
There is a story behind the shirt Kaija is wearing (see pictures below in the Album) . During Kaija's time at college she was studying Exercise Science and working as an Athletic Trainer for the Football team. Most of Kaija's classes was happening in the building named "Cage". Since Kaija has a unique name, with a unique spelling and spend a lot of time at the "Cage" she was given a nickname "Kage" by her friends and classmates. Some called her "Coach Kage", some "Doctor Kage" or Kageroni. Kaija's brother Dave designed a special shirt for Kaija for this journey and added a new title to her nickname "Iron Kage". Kaija is one of the strongest people I know. She has endured a lot, persevered a lot with patience, grace and true grit, never giving up, just pressing on step by step on this very difficult journey.
Thank you all for faithfully walking this journey with us!!
Our next appointments are on Monday. It's going to be a longer day at the clinic (about 3,5 hrs).
We made it to Los Angeles! The flight was hard. Kaija did have one big seizure at take off and a little smaller seizure at landing and a lot of myoclonic jerks in between. The travel took a lot of energy out of Kaija. She needed to spend most of the time in her bed today. We just did 15 minute outing to the beautiful roof top patio. Kaija's first treatment is scheduled for Thursday. We have few more days to rest and settle in. I am so glad my sister-in-law Laura Anne flew with us. On quite a few occasions during our travels I new it was God's provision that she was with us. I needed an extra pair of hands for sure. So far, we have met the nicest people to help us with various needs.
My devotion this morning started with Psalm 138:8 "The Lord will fulfill His purpose for me." I feel like this is the headline for the next chapter.
Thank you all for praying us through!
Oh goodness! We are in single digits, 3 days left till Kaija and I are leaving for California. There is one question that I keep hearing : "Are you ready?" It is hard to answer this question. For Kaija to be all better and well I was ready 11 months ago. That "ready" has not changed. Packing is about done, few other projects that I wished I got done, may not get done and that's ok. Seeing Kaija and her friends exchange friendship bracelets, warms my heart. The "ready" that I am struggling with is leaving three of my favorite guys. I will miss all the walks and talks and watching "Perry Mason" with David. Milo is my little shadow. He is trying to figure out which suitcase he is getting into. I am not sure, how I will survive without him. And Dave is my sidekick, actually I am his. For last two weeks I have tried to fill my heart with all the things Dave and I like to do together - hiking, biking, many trips to Barnes and Noble and Farmers Market, watching a lot of FIBA basketball and cheering for Latvia.
I have been thinking a lot about Moses. After the ten plagues when Pharaoh let the people go, did Moses feel ready for the journey ahead? Did he think that was the happy ending? Did he had a suspicion what a long road lays ahead to the promised land? Or did he just get up and go, because the Lord told him so. Yeah, I am feeling a little like that, just ready for that tiny next step. That one step closer....
Thank you for being on this journey with us! Thank you for all your support and for every prayer, that is what makes this journey possible.
Our one big prayer right now is for the flight. Please pray with me that Kaija would feel ok on the flight, with minimal or no seizures. We have a direct flight, pray that it would stay that way with no landings in between due to health issues. Thank you from the bottom of my heart!!
13 days till we are leaving for California. The suitcases have been brought to the living room and the packing process has begun. We are excited and anxious at the same time.
Last two weeks have been emotionally hard. By now all of Kaija's friends have returned to their colleges and had their first day of school. This is now a second semester that Kaija was not able to return to school. And emotionally this time it hit us harder than the first time. We were not quite ready for that. For me there is more sadness and grief for the year that did not turn out the way we wished. I asked Kaija what are the things she misses the most? Here are few from her list:
* eating food without feeling nauseous;
* being able to go somewhere by herself;
* washing and blow drying her own hair;
* to have a moment without pain;
* to have a good nights sleep;
* and the dream of walking again.
Things that we totally took for granted before this sickness. Long term sickness is hard. Whatever way you slice it - it's hard. But God is good by giving us little glimpses of miracles here and there. I know, He is with us! This journey so far has taught me not to be discouraged by hard. L.B. Cowman once wrote : "Many people believe that the power of God in a person's life should keep him from all trials and conflicts. However, the power of God actually brings conflict and struggles. You would think that Paul during his great missionary journey to Rome, would have been kept by God's sovereignty from the power of violent storms and of his enemies. Yet just the opposite was true. He endured one long, difficult struggle with the Jews who were persecuting him. He faced fierce winds, poisonous snake, shipwreck, he narrowly escaped drowning. Does this sound like a God of infinite power? Yes, it is just like Him. And that is why Paul told us that once he took the Lord Jesus Christ as his life in his body, a severe conflict immediately arouse. In fact the conflict never ended. The pressure on Paul was persistent, but from the conflict he always emerged victorious through the strength of Jesus Christ."
Kaija and I will be moving across the country, leaving our comfort zone, to do something we have never done before. This sickness seems like a big Goliath that we are about to fight. So, I am gathering my stones.
Our second Garage /Bake Sale with Purpose is in the books. Two busy weekends, but such a blessed time. Our hearts are overflowing with gratitude. All together we raised mind blowing $5500!!!!!! It really took a village to pull it all together. Thank you again to all who donated, baked goodies, helped with set up and clean up, came out and shopped, encouraged us with words and hugs and prayers. We feel so encouraged to have you all behind us! Thank you!!
There are 24 days left till we are leaving for California. We are excited and anxious at the same time, but there is no doubt in my mind that this is the place where we need to be.
I took few days off just to relax a little and refocus what all needs to get done before we leave, now back to work, more updates coming soon!
Our first Garage / Bake Sale is in the books. We had the best time! The kindness of our neighbors are just unmatched! Many came and donated stuff for us to have for the sale, many baked treats, helped us spread the word, put the signs up and then came to support us during the sale! You all have encouraged us in so many ways! We are so grateful for each and every one of you! Thank You!
We are getting ready for the round two on Saturday. If you are in Charlotte area, please come out and see us (10342 Lady Grace Lane, Charlotte, 28270)
We reached our goal!! We are so grateful! It is hard to wrap our minds around it! These few fundraisers that we are still doing will help us fund the cost of living. For the next few months we will have two households, my husband David and my son Dave will stay in Charlotte, so Dave can finish his senior year in high school. Kaija and I will travel to California and stay for how long the treatment will take. I am not sure if I am ready for it, but trusting Almighty to lead the way.
32 days left till treatment starts (30 days till we are leaving for CA).
My next big thing is to find us a car to rent for extended period of time! Prayers are appreciated!
Thank you again for walking alongside us!!
Last week went celebrating Kaija (see photo album below). We are so grateful for her friends who came to see her. Kaija's energy levels are not near where it used to be, so we spread it all out one to two friends a day. We managed to do two outings - haircut and movie. What a gift friends are!!!
There are 42 days left till treatment starts. Our hearts are overflowing with gratitude. In 25 days with the help from all of you, we have raised 96% of the funds. 25 days ago that goal seemed unreachable and here we are. Thank you so much!
As far as flights and lodging in CA, many of you have helped me with calling and doing research and reaching out to friends. You all are THE BEST VILLAGE to have. I could not have done it without you. I have the sweetest family reach out to us and offer us to stay with them. We are just beyond grateful! We are still working on flights. Kaija's doctor did agree for her to fly. We are still in the process of getting all the details worked out. Prayer are very appreciated for that.
To help our Fundraiser we are organizing Garage / Bake sale August 5th and August 12th. Charlotte Friends, please come out and see us. Flyers with all the details coming soon.
Through out the week Dan Bremnes song "Fingerprints" really touched my heart (see lyrics below). It talks about how things may look impossible, but we're living in a miracle. This journey for us with all the ups and downs is filled with Fingerprints of God.
Fingerprints (by Dan Bremnes)
Sometimes I feel just like I'm caught inside a moment
Not really movin', but you're going through the motions
Trying so hard to find the meaning as your days roll by
I know it sounds impossible, but we're livin' in a miracle, yeah
The more you look, the more you know that we are not alone
When you see love leave a mark
Healing broken hearts
You see chains fall apart
You see hope rise from the dark
It's so much more than ordinary
It's nothing less than extraordinary, no (no)
It's the fingerprints of God (oh-oh-oh)
It's written in the way, the stars break up the night
The proof, the clarity that opens up our eyes
It's all around, and it's inside of you and I
I know it sounds impossible, but it's actually a miracle
When you see love leave a mark
Healing broken hearts
You see chains fall apart
You see hope rise from the dark
It's so much more than ordinary
It's nothing less than extraordinary, no (no)
It's the fingerprints of God
(Fingerprints of God)
Open your eyes to the signs all around you
Hope is alive and it's living inside you
All creation testifies it, the more you seek, the more you'll find it
Love, love
Healing broken hearts
You see chains fall apart
You see hope rise from the dark
It's so much more than ordinary
It's nothing less than extraordinary, no (no)
It's the fingerprints of God (hey, o-o-oh)
(It's the fingerprints of God)
There's no such thing as ordinary
We're nothing less than extraordinary, no
And it's who we are; the fingerprints of God
19 years ago you came into this world and made me a mom. You were the most active baby and you never did things "by the book". There is always some type of adventure when you are around. But no matter what life has thrown your way you go through it with the smile. Happy Birthday, Kaija!
Kindness is just the most beautiful thing! After few hard days it was good to see Kaija smile her big beautiful smile. Our dog Milo does not like to cuddle (but we love him anyways). One of our friends let us borrow the sweetest and most cuddly doggie to cheer Kaija up. And oh how it changed her day!!
Kindness really is the most powerful thing that we can use to change someone's day!
See the Photo Album "Pandy".
53 days left till treatment starts.
Since my last update our roller coaster experience continues. You just never know what detours your day may take.
Few weeks ago Kaija had an unfortunate fall during one of her therapy sessions, that ended with a hurt shoulder, another MRI, but thankfully no surgery needed.
All our "UPs" have been because of your kindness. We celebrated 50% of the funds raised. Amazing! All the sweet notes and texts, and visits, and calls have been such an encouragement for all of us. Kaija said: "I have never felt this loved by so many people!" There is not enough "Thank you" I can say to reflect our gratitude. We knew we needed "a village" to get this done. And you all have been amazing!
And then on Monday again we had an unexpected doctor's visit. Kaija had a big seizure in the middle of our appointment. Big Thank you to Dr. Shepard and his crew for taking such a good care of us. We needed another CT scan done (still waiting for the results). FND is very unpredictable, you never know when your symptoms can strike. We still are learning and trying to understand the triggers.
You just never know where your day will lead you, but I am glad I know The One who holds all our days in His Hand and He is faithful to lead us through.
Prayer requests for this week: we are focusing on getting our flights and finding a place to live in LA. I am so thankful for family and friends who are helping me with phone calls and research. Please pray for open doors.
There is 63 days left till we will start Kaija's treatment in California. From one side it seems like a lot, but from the other side there is still so much to do. But everyone of you have been such a blessing to us. It only has been few days and we have already raised 40% of needed funds. Thank you! Thank you! Thank you!
When sickness strikes the entire family suffers. And sometimes siblings are the ones who suffer the most emotionally because they do not have the same support system as parents or the person who is sick. I am learning a lot about chronic illness and effects on family.
But let me tell you Kaija is blessed with the most wonderful brother you can have. Dave is always by Kaija's side and will put her interests and needs above his own every time. Never complaining that his life is somewhat on hold while we are seeking treatment for Kaija. When Kaija lost ability to walk he very quickly learned how to move her and transfer her, he sits with her when she has seizures and tells her jokes when she needs some cheering up. Dave really is the best brother. Today is his Birthday (if you are on Instagram you can wish him Happy Birthday). Looking through the pictures I realized that Dave has given Kaija rides since he could barely walk. ;)
Check out the Photo Album "Happy Birthday, Dave"
Thank you again for being with us on this journey.
Dear Friends and Family!
Thank you just doesn't seem to express the gratitude we have in our hearts. We are blown away by your generosity and very encouraged by every message and text, phone call, prayer and well wishes. We are so grateful!
Very early on in Kaija's sickness when I was very confused (because doctors had trouble diagnosing), sad and heartbroken (that Kaija's freshmen year in college was turning out this way) God gave me a verse that I've been holding on to - Isaiah 41:13 "For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will Help you." God has been very faithful to us in this valley of sickness. To have you all by our side is just one way God has answered our prayer and provided for us. Thank you!
We still are learning about this debilitating illness called FND - problem with functioning of the nervous system. Many doctors have told us: "It is a "software" issue of the brain, not the "hardware" (as in stroke or MS). But in our every day life we are faced with the same issues like someone who just had a stroke or is living with MS. That is the reality of FND. Below you can find a photo album called "Reality of FND" and there are two pictures that show you when FND strikes, in a very short period of time you can go from being active to being wheelchair bound.
But I believe that God is not done with us!
Loading Images
This is for Kaija because I see the pain every day in Julia's eyes.
Gay Gasperski
Hey Kaija! Im praying for you every day. You are such a wonderful friend and I know how strong you are and you will pull through this with the Lord in our side. May He bless you and your family ❤️
Elise Tuz
Stay strong Kaija :) ! Rooting for you !
Tori Wilkins
Kaija & Dace,
You remain in our prayers across the miles.
Love, Jon & Jen
Jonathan Krueger
Thanks SO much! We really appreciate the updates. Yes your snow globes are quite the analogy for your lives these days! They are very pretty. You persevered as you continue to persevere with Kaija’s treatments every day. Blessings to you both. ❤️❤️
Jennifer Prowe
Sweet, Kaija, I have been praying for you and am so thankful that your Aunt Laura shared this journal with me. Sending love and hugs. Mrs. Koelz
Andrea Koelz
I will be praying for healing for Kaija, for wisdom, clarity, and guidance for her medical team, and peace and increased faith for all.
Kristy Vogt Miller
David, Dace, Kaija and Dave,
We are lifting your family up in prayer as you travel to California for treatments!
Asking our Heavenly Father to heal you from head to toe and restore you to good health and walking again!! We believe in miracles and look forward to how God will use each of you in a mighty to share His story!
Much love,
Dan and Cindy Miller
Daniel & Cindy Miller
We are praying for you!
Katie Carruth
We are optimistic that treatment in California brings hope, peace and healing. Hugs and prayers to you and your family.
Blair Harris
Praying for healing! May you feel God’s love and strength! - Eddie and Jerri Haigler
Jerri Haigler
Praying for your sweet girl and your family! Love,
In Christ
Kim Meador Yates
kimberley yates
Praying for you every day.
Teddie Stang
Praying for healing for Kaija.
Sharon Toole
Very Best to Kaia!
Rhonda Styka
Prayers for healing and cheers for all of you as God leads you to the hands that will ultimately do his work. We love you! - Harrington Family
Kara Harrington
The is an excellent site. Having known Kaija almost all of her life and watching her grow up, we can attest to fact she is a bright, kind, talented and beautiful young woman! She deserves all the help we can give her!
Jennifer and Terry
Kaija + familly, sending you love and best wishes on this hard journey of healing.
Jurgita Svediene
Praying for God’s healing and for you to experience the joy of His presence and provision
Ron Johnson
Hoping for a full and speedy recovery!
Gregory Hammer
Praying and wishing you a speedy recovery
Amar Pahwa
We love you Kaija!
Stacy Forrest
Calvin James brought your story to us and we continue to pray as a group for you.
Alan Wise
Wishing all the best!
Irma Harpley
We love you guys and are praying for your CA adventure and Kaija’s healing!
Alida and John Beatty
I will be praying for Kaijas upcoming therapy, that she will make progress and be able to get back to her life. God bless y’all during this journey.
Susan Whitney
Kaia,
Many in South Carolina praying for your treatments and full recovery.
Chris Warden
Kaija and Hite family--we are praying for healing and finding all the help you need on this journey. Hang in there! Brad & Wendy and Emily Bills
Brad Bills
I am praying for you. That the Lord will heal you. That He will give you peace and hope in this time. And that He will provide the funds you need to get help. The Lord is always with you. Hoping for the best for your future!
Taylor Szep
Continually praying for you all!
Nicole Tallent-Smith
Praying for a miracle and sending hugs and love your way.
Kimberly McConnell
My thoughts are with you! Peace and blessings to the whole family.
Cynthia May
LOVE AND MISS YOU SWEET KAIJA!
Kady Hillman
David & Dace
My thoughts and prayers are with you all and Kaija during this time.
Love
Chuck
Charles Livingston
Praying for Kaija 's complete healing.
Anonymous
We are friend of Emery Anzalone’s. Sending love and prayer for strength and healing ❤️
Laura Swisher
Praying for you! You got this!
Ruth Glaser
Praying for you every step of the way!!! God is writing a story with your sweet family and I can't wait to see how it unfolds.
Chrystal Bachmann
I
Janie Steinmetz
Praying for you Kaiji, and all the amazing things God will do through this time of suffering and for your time in California.
Love you,
Janie
Janie Robbins
Prayers for complete healing!
Karen Powell
We hope sweet Kaija gets the help she needs. We are thinking of your entire family.
-The Dexters
Denise Dexter
Praying for full healing for Kaija and the encouragement to never lose hope for you all!
Jen Schultz
We are praying so much for you all. Your dedication and perseverance is inspiring!
Kim Schoubert
Wishing you the very best! We will be praying for you!
Becky Lee
Praying for your entire family as you walk this path.
Heather King
Praying for all of you!
Anonymous
We will continue to pray for Kaija and your sweet family! Graham (our 4 year old) started asking us to pray for Ms. Dace’s daughter months ago & we didn’t know what was going on but she was in our family’s morning prayers on the way to school. Sending love to all of you!!!
Becca Babcock
Praying for you all as you are on this journey. You are not alone.
Amanda DeHaven
We are praying and trusting in your healing, Kaija!
Dana Saxe
Sending prayers, hugs and so much love to Dace, her precious daughter and family.
Cathy Graham
If anyone has the faith and fortitude to successfully take on this obstacle it is Kaija! We are praying for strength, healing and comfort. Sending hugs!!
Lori Ream
We are keeping you all in our prayers. Praying for strength and stamina as you continue this fight and pray for full healing!
Lee McGee
Keeping you in prayer Kajia and family!
Karyn Bowman
Lifting up prayers for Kaija and your entire family and that the CA clinic brings healing
Megan Spivey
I had no idea your family was dealing with this. Love and prayers!!
Elizabeth Tabor
You got this Kaija!!!! Although I’ll be supporting you from afar while you’re in California, let me know if there’s anything I can do in the meantime. Sending lots of prayer and hope your way.
Sarah Griffin
Much love and many prayers! Aunt Laura Anne, Uncle Land, Chad and Laura Beth! God will do immeasurably more than we can ask or imagine. We often don’t know what doing but we know who He is!! We can trust Him!!
Laura Anne Hite
Oh friends! Todd and I are heartbroken to hear all Kaija and all of you have been through this year. We join with you in prayer that God will completely heal your beautiful girl and give her the strength and hope to face each new day until then. We pray your faith remains firm and God's comfort is tangibly felt by all of you. Sending our love.
Jennifer Neal
Many prayers for Kaija and your family as you begin this journey with great hope! Deuteronomy 31:8
Beth Hemby
Prayers for a successful treatment!
Anette Henry
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Kaija Hite
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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