June 2017 update

In the month of May Katie started to have discomfort and pain in the lower right abdomen. It has never seemed to get worse but it has not gone away. We saw her Dr on May 18 and he was not concerned. On May 30 Katie had another focal seizure. This seizure seemed to take longer to stop with the Ativan. But once it stopped she slept all day and the next day she seemed a little tired and her left arm was fatigued from the seizure but otherwise you'd never know. The Dr gave us a prescription of Ativan to be able to stop anymore seizures at home. We upped her Oxcarbazepine which was stressful as when we last tried to fill her prescription we were informed our insurance no longer covers it and the cost would be $1366. To sum up our search for meds we found a place to fill the prescription for $30 but then weeks later after 5-6 phone calls, I called to find out where our medication was and they don't carry the liquid version of the medication. So here we are weeks later and almost running out.  We found coupons online at GoodRX and were able to get the prescription at Walmart for $350, so still expensive but we saved a thousand dollars. We are looking at another place to get medication but they are not returning my calls. But now I have 3 months to hunt them down. 😁 

But back to Katie's health since her seizure she started having back pain in the area of her kidneys. Her belly is also swollen. We took her to the chiropractor and she said to get her into the doctor. She said it appeared to be the beginning of a bowel obstruction. So I scheduled a dr appt and prepared Katie by saying they will need to run some tests to find out what's wrong. 

We saw her pediatrician on 6/21. On the morning of the appt Katie tried to tell me she was kidding that her back didn't hurt. After I initially yelled at her for lying I saw her fear. I got on the floor and I held her as she cried and told me she was afraid of blood tests. We cried together and I told her to not be afraid or worry. At the dr they did a urine test to test for UTI and an X-ray. In her X-ray they found that she had a back up of poop. So for now we are trying to 'clear' her out. Then when we go back on Wednesday 6/28 if she's still having pain (which she currently still is) then they will run blood tests. We will do another X-ray before seeing the Dr so she can see what's going on inside too. 

It was definitely an unique experience to deal with Katie's fear. She has never shown fear or anxiety of the doctors office or visits in all of her 7 years of life. So please pray for her and her heart as we will probably need to get blood tests done on Wednesday. Please pray for healing and diagnosis as we are trying traditional and natural medicine to help Katie! 

Katie Update 6/23/16

The lastest on Katie is that her stomach still hurts. She has been telling me and everyone else about 100 times a day. I wish I was exaggerating. Her head has started to hurt again more often. I can't imagine what it is like to be 6 and be in constant pain and discomfort. She plays with her friends and goes to swim lessons. All throughout the day reminding us, telling us how much her stomach hurts. 

   We continue to improve her diet and have added some supplements. Her pediatrician has exhausted all her possibilities. We have an appt on Monday with a Gastroenterologist. Pray for that appt. Pray for Katie's heart, spirit, and body. Pray for wisdom, guidance, and healing. It has been 3 months now. Please pray!! 

Thank you!  

May 2016

Thank you for all the prayers for Katie! 

This morning around 2am Katie woke up not feeling well. Shortly after she started throwing up, her left arm seemed stiffer and less responsive. Around 3am her left arm and head began convulsing and I knew we were off to the ER. This incident was almost exactly the same as her only other focal seizure in March 2015. She was sweet, joyfilled, talkative, argumentative and brave in the ER. They fished for an IV vein on her right arm TWICE and she didn't cry, scream or fight only said "I don't want it." 

They succeeded at holding her left hand still and getting the IV in that hand. A difficult task with her arm convulsing. Her head convulsed some as well, twitching to the left and her eyes kept turning to the left as well. Within 15-30 minutes of the IV and with Zofran and Ativan medication she was snoring, dead to the world and most importantly no longer convulsing.  About an hour after that we were admitted to the hospital and taken to the pediatric floor. Room 406. She remained asleep for about two hours and only got up to go pee. Katie started becoming extremely irritable when awake and started ripping off the leads and trying to tear off her IV. I would calm her down and she'd fall back asleep. Her last episode was the hardest. She cried for at least 10-15 minutes which felt like an eternity. She wanted her wires off, her IV out and wanted to go home. Though I have peace through her journey I broke at that time and cried along with her. 

She finally stayed awake and coherent enough to eat around noon. She was insistent on eating a cheeseburger and devoured the whole thing with toast and applesauce. Then fell back asleep and has been asleep since then, now almost 3 hours. She was still weak and unsteady trying to go to the bathroom. Hopefully these 3 hours have been enough to bring her back to health. Praying she is physically ready to go home as they prepare to discharge us soon as we  requested. She is mentally ready to go home. 

This is a reminder to always pray for no seizure activity when times are good we forget sometimes what a high risk she is. Any virus or brain injury can start a seizure. 

Pray for no infection of the shunt and its proper function. 

Pray for peace and joyfilled spirit for Katie! 

Pray for wisdom and guidance for her parents! 

Pray for her health as running a daycare makes week day hospital stays taxing on everyone home! 

Thank you for your prayers!! Your prayers make a difference!! 

April 2016 Update

Great news since our hospital stay March 16-17 Katie has not had another migraine headache!! She has had a few mild headaches here and there which isn't normal for her, but better than daily ones. Now she has traded daily headaches for daily tummy aches. There are no side effects other than complaining her tummy doesn't feel well. We see the doctor this week, but in the meantime we are focusing on her diet. In the past I counted her calories and she was always within a normal caloric range, but now I am really focused on trying to diminish her refined sugar intake. There is sugar in so much stuff that until you read the label on everything you just don't realize how much. Katie is open and accepting to eating healthier and and eating less sugar. It is a daily journey and we are only a few days into being more strict about it. There's no improvement yet, so pray that through this journey we hopefully can heal her with just more real foods. I am looking into a chiropractor to take her to and additionally get some nutrition support for her.  We are trying to allow her to be a child, but to learn how to eat healthier, make better choices and learn for herself how we feel better when we eat better. Something we all could put into practice more often! 😉

October 2015 prayer request

Katie is in kindergarten!! I still can't believe it! She is doing amazing! She has an aide that helps her as she writes and school in general. She still needs prayers because when she writes/copies it requires so much visual focus and fine motor precision that she tries to shut down and quit.  It has to be exhausting to focus so hard and still have it be so difficult with these as her two weakest areas. But her teacher and aide are challenging her and so far she is able to fight through. Pray it becomes easier and that she continues to comply! 

Also please continue to pray for her weight. I am continually concerned with her weight. We walk home from school everyday (just over 1/2 mile) and she is in PE 3 days a week and swim lessons. She plays hard and continually eats less than normal children. She is eating more fruits and vegetables. But she continues to gain significant weight. It hurts that I can't fix it. But Katie knows no difference. I can barely afford to keep buying her bigger sizes.  But I thank God she is happy and healthy overall! Please continue to pray that she stays seizure free. Her weight gain slowed when we lowered her seizure meds, but I do seem to think the big trigger is her brain damage. Please pray for her body and brain to slow its weight gain and that puberty waits for several more years as prepubescent puberty is common with brain injuries as well. 

But continue to give thanks for her cognitive ability and her overall amazingness!! I never thought I'd be doing regular kindergarten homework with her. I wouldn't thought she'd master letters and sounds by beginning of kindergarten. She could barely write her name this time last year. 

Katie is God's miracle! Her therapists, teachers, aides and family and friends have helped her in millions of ways, but God gets the glory! 

Thank you Lord!! 

Newest prayer request

So, this is one of the harder prayer request to share. I guess because most of Katie's ailments and struggles I simply do my best and I could never be considered at fault. Yet when it comes to her weight I feel I could carry responsibility and it seems more personal. But I have improved her diet and watched her activity level. I am confident in my efforts that her weight gain is not because of me and outside circumstances. She eats significantly less calories than her age and activity level require. Something within her body is off and we've started a string of blood tests to start investigating.  We are not ruling out her seizure meds, but since she has been on the meds for two years and the weigh gain only started last April we are looking at hormones and internal stuff and ruling everything out. All basic blood tests are within a healthy range. She is doing great overall! But her weigh gain is rising dangerously quick and I won't wait it out any longer. I can tell her stamina is dropping as her weigh rises. Her pediatrician is amazing and calls me to discuss her and calls other doctors for advice. After her blood tests results come in next week we will continue to dig deeper. 

Thanks for praying!! 

Prayer Requests September 2014

Today's prayer requests- continued improved vision- she is no longer legally blind (Thank you God for answered prayers!) yet still can't consistently see far away, it takes a lot of focus and concentration to watch tv from the couch and watch shows or parades or observe life in distances of 20plus feet. 

Her left hand- seeing it every day it is hard to see the improvements, but last year she had to concentrate so hard to open and close her hand, if she worked it too hard, releasing her grasp on something would be a fight. She is using her left hand without hesitation now. We accept she may not have fine motor control with her left, but we also know with confidence that God has granted us many requests, so pray that her hand continues to gain strength and control and functionality. 

Attitude- she can be extremely difficult to work with in school and therapy and home. If she doesn't want to do something whether it is therapeutic or necessary she can throw a tantrum to end all tantrums. We have learned to pick battles worth fighting over. So please pray for more cognitive reasoning skills of what is good and necessary. Simple things like brushing teeth can become a battle of 5-10 minutes of screaming, crying and restraint for 30 seconds of the toothbrush in mouth. Getting ready for kindergarten will need to be more smooth as well as assignments in kindergarten next year can't be fought tooth and nail. (Her sweetness and joy far outweigh her serious feistiness, but her lack of being able to reason with is becoming more problematic.)

Her cognition and school readiness- nothing to worry about yet, but prayers appreciated.  With hundreds of therapies appts and a year and a half of school Katie can't successfully write her name. A few letters are staring to emerge. Even tracing her name is so difficult she shuts down quickly. She has immaturity in general and with social skills and understanding. She is a leader without a doubt, but needs to have some flexibility and openness while playing with other 4-5 year olds. She screams, pouts, hits and fights with anyone who doesn't want to play the way she does. I want her to be her and I want to respect her love of attention, direction and leadership, but reality is to be a good friend requires compassion, mutual respect, compromise and understanding. 

Her swim lessons have made leaps and bounds in the last 9 months. She went from crying and screaming in the water to swimming. Yes my daughter is starting to doggy paddle. For most 4 year olds a 2 week class would teach them the basics and  maybe within 2-6 weeks they could swim as proficiently as Katie has learned in 9 months. But for Katie with her left sided weakness she has to seriously focus and think about using her left side. With the amount of concentration and exertion she does while swimming her left side wants to posture and lock up stiff as a board. She has to fight against her own body to move especially her left arm. But she can swim several feet, but she has to focus and work very hard. Pray that she can continue to improve and that swimming becomes more fluid and natural. Pray that she becomes truly and consistently water safe and that her strength and coordination flows over into other areas. 

Katie almost 4 and a half years old!!

                   It has been way too long since I have written an update! In general that is a good thing because there is no outstanding reason for prayer. Yet, I have meant to write since she turned 4 years old in January.  Well, here is the very latest.
      Katie has met most of her goals for the last year. She is doing well at school and in therapy. We do believe that the virus that she had in November 2012 was a polio-like virus that has re-damaged her left side extremities. Her left leg has regained strength and is doing great! She will have a different gait, but she has no problems with tripping regularly any more. Her left foot and toes have not regained as much strength, but haven't been a problem unless putting on boots because she can not lift or wiggle her left toes. Her left hand has never returned to where she was before she got sick.  Katie can not supinate her hand (put her palm up) and has poor control over her left fingers and thumb. The lack of improvement is discouraging after over a year and a half of multiple therapies per week. So, we are accepting that her arm may never return to full functionality, but we will continue to work hard, encourage use, and pray for full function. 
Katie's cognition is age appropriate and she has another year of growth before she enters kindergarten. Her neurologist and neurosurgeon are impressed with her growth of speech and cognition. They said keep up the good work and therapies. She has being seizure free for a year and Dr. Gurbani said that it is 80% of the journey. Now the next 2 years are the last 20% before she is weaned off her medicine. Yay!
Katie's social skills could use some prayer as she continues to learn how to play well with others especially when they don't want to play what or how she wants. 
Katie has been taking swim lessons since the beginning of the year. They are going great! The latest lesson has been to doggie paddle which is extremely difficult with her left arm, but she is doing great and working hard!  She has an amazing group of instructors at Fast Swim School in Fullerton. They teach her, coach her and love her! They go above and beyond to learn how to adapt to her disabilities and make lessons about swimming and therapy. Pray for continued growth and strength!
She enjoyed her horse back riding lessons she received for her birthday! She was extremely stubborn at times for her exercises, but overall enjoyed the horse and riding.
Katie's vision has seemed to be improving. Keep praying!! It is amazing to be overwhelmed when she points out Johnny's old pre-school while we are driving. Something so simple is so wonderful!! We see her ophthalmologist on Monday to get an idea where her vision is now, so I will have another update in a week.
My day care business is doing wonderful with life-long customers and friends and word of mouth customers. I am full and as busy as can be! This is great overall, but it has been hard as I can no longer take Katie to her therapies. But I am extremely thankful for my dad who has made everything possible since his retirement! (Thanks Dad!!)  This is hard on my heart, but I am overwhelmed with amazement for her progress. My eyes fill with tears when I watch her run, jump, climb, swim and live life with such joy! Thankfulness overflows in to every corner of her being, her life and our family's lives!

Our current prayer request comes from our Friday visit with the orthopedic doctor Dr. Lau. It is usually an uneventful appointment. He looks at her left hand, watches her walk with and without the brace and says keep up therapies and wear the brace often. But Friday he brought up something new. Dr. Lau referred Katie to a hand surgeon to look into if Katie is a candidate for surgery that would improve her left hand's ability to supinate. Fear is our initial reaction, but I agree after a year and a half of therapy other means may need to be considered. So, we have a consultation on Wednesday with the hand surgeon and will know more after that. Pray for wisdom all around, for us and doctors, and what is best!
    But lastly I have to share my God moment from today. At a birthday party another parent, I had never met before, struck up a conversation about how fearless Katie is.  Since her awkwardness stands out to me I told him she has cerebral palsy and that she is an active brave girl. He tells me he knew she had cerebral palsy and continues to tell me a frighteningly similar story to Katie's.  He has cerebral palsy affecting his right side from lack of oxygen at birth. Then at around 5 he had a fever that worsened his right side and he eventually had surgery to improve his supination on his right hand.  I started to tear up as I told him that our Dr. had suggested that surgery yesterday.  He said that the surgery made a significant difference in his life. He is a dad of 3 kids, fully functioning and only after he told me could I see little indicators of cerebral palsy. So, that God moment will never be forgotten especially as we meet with the hand surgeon. Please continue to pray for wisdom and direction! Pray for Katie's left side and vision! Pray for all of us too!  Yet never forget to give thanks for her progress and her joy and Katie herself!!  Thank you!!  Thank you!! Your prayers have made a difference! My thankfulness can never be expressed enough!! Thank you!!

The results of today's visit

The results of today's visit

We finally got an idea of where Katie's vision stands. At first she seemed to be uncooperative, but they started with smaller pictures and when she was cooperating she couldn't identify them, so she wasn't uncooperative, but she simply couldn't answer. Her vision is less than I expected, but I guess it is where I have observed it. She has trouble seeing across the classroom. If she is in unfamiliar environment her vision can be less. If there is too much sensory (people, chaos, noise, lights) then her vision can be less.

    Her vision was measured at 20/125. This measurement may not be totally accurate, but from what we see it probably is. Her vision should not get worse, it MAY get better, but it may stay the same. At 20/125 it is at is the line of legally blind. So, not the best news parents want to hear. We are thankful for her, her progress, and every other area of amazingness! She is leaps and bounds above where she "should be" with severe brain damage. So, what do we do- PRAY, PRAY, PRAY, and let her view the TV, phone, book, papers, ect from as close as she needs to, and maybe some large print at school. There is not much more humanly possible. 

Pray specifically for her vision to improve and for new pathways to be made in her brain for her vision. 

I have seen the miracle of prayer happen with Katie, so please please keep praying. Her brain (and therefore vision) can improve and make new connections and pathways for another 2-3 years. 

Thank you!!!!  

For the common questions-

Glasses won't help since the damage is the pathways in her brain and not her eyes. 

She can't learn Braille since she does have some vision. 

She will keep receiving vision therapy once a week at school. 

Information I found on line -->

Low Vision

Low vision is a partial loss of sight (also referred to as partially sighted or visually impaired). It is often a loss of visual acuity or sharpness, but may also be a loss of side vision or extreme difficulty with light or glare. Low vision exists when functional vision cannot be adequately corrected with eyeglasses, contact lenses, medications or surgery.

Legal blindness

Legal blindness is a level of visual impairment that has been defined by law to determine eligibility for benefits.

The term Legally Blind identifies an individual whose central visual acuity is 20/125 or poorer in the eye with better vision when wearing best correction.

 

Katie 10/2013

Please pray for Katie's vision. I am thankful for all the vision she has! Yet I am concerned that her vision is not as good as it seems. She can't identify me from across the classroom until I talk. She will assume from 20-30 feet off if a person looks similar, for example calling our neighbor "daddy" as he walked by the house. She gets up close and personal when looking at books or watching tv, or playing on my phone. She will only really watch tv when she is within 5 feet or closer. I used to think she just liked to watch tv from a foot away, but now I think she can only see it clearly within close distances. 

And to clarify her visual impairment the damage is within her brain. So, glasses won't help because the images enter her eyes clearly, but the pathways from her eyes to her brain are damaged, so within her brain the images are blurred. So, the prayer request is that God will continue to repair her brain and restore the connections with her brain. 

We see her ophthalmologist on November 4th, so I will reaffirm that it is ok to let her watch tv within such a close proximity, but at the last visit he said not to prohibit or interfere with how she looks at things. 

Below are cute recent pics of Katie! 😊

Starting a New School Year

Thank you for your continued prayers for my Katie! She is doing amazing!! It has been 10 months since she was diagnosed with epilepsy. My heart still hurts. But I am thankful, every day I am thankful for Katie and her journey. As much as I wish she didn't have to take medicine 3 times a day or worry about more severe seizures or have to fill out the extensive medical forms and so many doctor visits; I am thankful. The seizures she was having at the end of last year have done amazing work of some kind in her brain to  start triggering, rewiring and stimulating her brain in unbelievable ways. Even a few months ago she couldn't tell me anything about her day at school. Day in and day out she said, "I goed on bus. I ate snack." Already this year she is able to tell me names of kids and some insights to life at school. She helps the new kids in class by helping them to where they need to go or holding their hand or showing what to do by example or by simply bossing them around. She is adored by her teachers and the other children look forward to seeing her.
Katie still has a long ways academically to be age-appropriate, but the fact that she has learned shapes and colors and a few letters is a sign that it will come when her brain is ready and able to process the information.

The biggest negative impact of the epilepsy is the weakening and lack of coordination in her left hand. She had just graduated therapy when she got sick. (For those that don't know Katie had a stroke in utero, she has severe brain damage, she has a VP shunt, visual impairment and left sided weakness. In November of last year Katie came down with a nasty virus that triggered something in her brain that caused her to start having seizures.) So, Katie is re-graduating from physical therapy because her gross motor skills are great! She still has 3 Occupational therapies per week to address her left hand. She lacks the ability to supinate her left hand, in other words, she can not rotate her left hand to put her palm up. She uses her left hand often, but it is awkward and weak. She has one vision therapy a week at school. Katie's vision seems totally normal at times, but in a new and unfamiliar environment her vision deficiencies are apparent. In a new place she has difficulty identifying a person 30-40 feet away. But on a typical night at home she can point out the moon in the sky. It varies mostly in unfamiliar environment and with movement. Her eye shaking is called nystagmus and may effect her vision some, but mostly her vision pathways in her brain are damaged. This is why glasses won't help because her eyes see everything correct, but between her eyes and brain the picture is blurred.

We are thankful for many, many countless things!! So as you pray for Katie remember to thank God because her progress is a miracle!! Current prayer requests for Katie are- supination of her left hand, strength and coordination of left hand, continued academic progress, and her vision which is difficult to measure how much it is effected and is inconsistent between environments and situations, and a life-long prayer request is that she shunt will continue to work properly. Every time she complains of headaches for more than a day or throws up or is acting off like she doesn't feel well in the back of my mind I wonder if there is something going on with the shunt. So, there is always a need for continual prayer for a properly working shunt and no infections, since anytime there is a foreign object in your body there is a on-going risk of infection. Also prayers for self-control for Katie and that she would sleep through the night at least 5 nights a week. Sometimes she makes it to 5am before coming into our room, but often I may put her back to bed 1-2 times per night and every morning by 6:30am she is sleeping in our bed and wakes soon after. She is an early riser, but at least she is happy at 6:30 every morning. I thank God for her feisty attitude that has gotten her this far and her joyful attitude that puts her into the heart of SO many people!! Thank you for all your prayers!!
Thank you!!
Thank God!!
Love you and treasure you all!!

End of first school year update

Katie has made good progress do far. With 4 1/2 months of school behind her Katie is making progress in academics. She can recognize a few shapes and most basic colors. She can identify most of the letters in her name. Her left hand has made progress as well. She can open her hand slowly with great concentration. Her left hand is still no where near it was before the seizures started. I do think we have the seizures under control. Next month we go back to the neurologist so we'll see what happens now.
Katie is finally potty trained! Thank you for your prayers!

Answered Prayers

Thank you for your prayers!! Each week I can see improvements!! We are now where I can say she is potty trained. Her left hand is improving each day!! She can open it upon request. She can clap again with a mostly open hand! Katie can hang from the monkey bars with two hands with her full weight for 20-30 seconds. She had been doing that ALL the time before she got sick in November. In the last month her ability to recall information has started to be established. In February Katie could not recall what we did the day before or what she did at school or any ride we went on at Disneyland. But yesterday she told me she painted a butterfly at school. She can tell you a ride she went on at Disneyland. She can recall that we tried to go to the beach last week and that it was too windy to stay, so we went to a playground. She can share her favorite things. Katie can talk and converse with you!! It is amazing progress from just the last few months!! Thank YOU for praying!! I thank God everyday just watching her play!! Katie is a compilation of so so many answered prayers!!
So now I ask you to continue. It is so hard sometimes! I know she has epilepsy and I have seen many of her absent seizures, but still receiving a call from her teacher at school to report that Katie had two seizures yesterday at school is hard to hear. Please please keep praying that the seizures will stop!! Please pray for her left hand to return to at least where it was last November before everything!! Please pray for wisdom for her doctors!! I left a message for doctor but probably won't hear back until later today or tomorrow.
Again thank you!! Katie is a miracle!! She is our many answered prayers!! Her progress is beyond simple medical and therapeutical improvements, but is held in the hand of our mighty, healing, wonderful God!! Thank you!! Thank you God!!