Monday, November 4, 2013

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.


Sunday, October 27, 2013

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! 😊

Wednesday, September 25, 2013

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!

Thursday, April 18, 2013

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!!

Sunday, March 24, 2013

Prayers for Katie

Katie is doing great!! I thank God everyday!!
We saw her neurologist Dr. Gurbani on Friday and overall good appointment. But some prayer requests are-
*For seizure activity to STOP. He believes she is still having small, shallow absent seizures.
*No side effects to medication increase. Last time for over a week after her medication increase she was excessively moody and clumsy.
*Healing for her brain. He said that although she is physically 3 years old mentally Katie is 2 years old. She may be in her 2s for another year or two (possibly more). Her brain damage affects her behavior, complete potty training, learning capacity, speech and even singing. Give thanks for who she is and her progress while continuing to pray for healing.
*So specifically Katie's speech is great overall, but her brain has difficulty processing which leads to choppy sentences, incorrect grammar and sentence structure and slow sentence formation. But don't get me wrong for a moment that I don't count my blessings. Last year she couldn't talk with me or share with me. Now she is telling me her favorite part of her trip to Knott's was riding on the horsey with Daddy. And at Disneyland she ASKED to go on the Carousel. Huge steps!! I am thankful, if her progress stopped today I would be at peace, but I KNOW that God has great things in store for Katie. He will use her speech and personality to glorify Him!
*Too much information for some, but pray for complete potty training. It has been a long year of Katie wanting to be potty trained, but still number two is inconsistent in getting it where it should go.
*Lastly pray for compliance overall.
It would be overall more beneficial for Katie (and everyone) if she would cooperate in school and therapy. Also, mom would be able to retain some more sanity.
Katie will be starting school three days a week this week with her existing 3 Occupational therapies a week and 3 Physical therapies a month. In May Katie will have 4 Doctors appointments. So just continue to pray! Thank you! I appreciate each and every prayer!! Thank you from the bottom of my heart!!

Thursday, March 7, 2013

Continuing the miracle

I never know what to call the updates. But Katie's miracle is continuing every day. I was thinking back to this time last year and noting how though Katie had her lovely, happy, bubbly, determined, independent, joyful personality she was still infantile in many ways. She had no preferences or favorite toy, show, ride at Disneyland. She had no excitement or interest going to Disneyland or the zoo or a restaurant. She made the most of where she was but infantile is the best way to describe her. She could communicate wants and needs, but she couldn't converse with you in even simple ways. She had parrot phrases to answer questions but little spontaneous answers.
A month ago if you asked her about her day at school she would say, "I just eat." Then she started saying, "I goed on bus." Now she is starting to tell me some details. But last year she couldn't tell you anything about her day. You can continue to pray for her speech processing. She speaks so well, but her sentence flow is choppy. I don't know if it is brain processing or simply maturity. I am extremely happy with her progress, but any prayers are welcome.
Her left hand has shown some improvement. She is starting to release objects occasionally. She couldn't do this on command at all 2-3 weeks ago. She has such an amazing spirit!! She tries so hard to use her left hand. She will use two hands to eat a cracker just to involve her left hand. She will try to put food in her left hand to eat. She will use two hands to push her baby stroller. Sometimes I can see the fatigue of her left hand come very quickly, she tries but her hand won't cooperate. She tries so hard and my heart aches that I can't fix it. So I keep praying because I have seen the miracle of prayer!! The progress Katie has made in just the last 3 months is unbelievable!! Thank you for being a part of her miracle!! I am so very thankful for each individual prayer!!!

Sunday, January 20, 2013

I can't believe Katie is almost 3

Katie's neurologist appointment was interesting. He sat and looked and looked at Katie's MRI and CT Scan and compared them side by side with the older scans and he found no explanation for her sudden and significant weakness in left arm. He said the only explanation would be a stroke but MRI and CT scan showed no signs. A virus can cause paralysis, but there was no sign or change in the scans. This wonderful, awesome neurologist doctor stated in the midst of our appointment, "Your child confuses me." Not what you want to hear from your daughter's doctor. But he agrees she is special overall. He upped her anti-seizure medication in case her left hand weakness is from continued seizure activity that we don't see. Please pray for the medication! Pray the side effects are temporary to the increase! She has been more groggy, irritable, and clumsy since the increase. Pray that the medication stops any seizure activity and her left side strengthens!
Katie will start school on January 28th in the Arovista special ed preschool program. Her IEP went great and smoothly! It is not finished yet. Eleven total in attendance- different teachers, therapists and psychologist were in attendance and there were 3 that weren't present. We have to meet again to review OT and PT evaluations and agree on her the goals. The most interesting evaluations was the difference between the psychologist's evaluation in December and the teacher's evaluation last week. In December she was scoring below a two year old level, but a month later she was scoring within her age range. She has made great progress in this last month! Her brain has made miraculous progress. She sings so many songs now and makes up her own songs! It is so cute when she puts other peoples names into the songs!
Please pray for her vision, visual processing, comprehension, speech articulation, general memory and repeating back the days activity. Pray for Katie's transition to school and mom's separation from her. Pray for Katie pre-academics and that she will thrive and grow in school. Her pre-academics were her lowest score because we have been so focused on her physical progress and overall stimulation of her brain and vision. I have no doubts in her potential cognitive abilities, but it is something you can pray for.
Thank you for your prayers!!
Thank You God for your blessing and healing! Thank you God for Katie and her miracle!!
Thank you!!!!

Thursday, January 17, 2013

Katie working hard at therapy

Some pictures of Katie showing how she is gaining strength in her left hand.
The colorful tape on her hand/arm is called Kinesiology tape. She had it on her left leg before she started walking. It is stretchy and it pulls her fist out of a fisting position and aids in keeping her fingers opened up. It makes a significant visible difference and at therapy she was opening her hand and grasping toys. Continue prayers for improvement and thank God for her progress!

Wednesday, January 16, 2013

I Wish I Could See A Day Through Her Eyes

Katie has had more evaluations in the last six months than I can count. I think she has seen more than a dozen different therapists. 
The last evaluation was a speech evaluation and it was really interesting to watch Katie. We began to realize through the evaluation that she was having trouble visually processing the pictures. I just wish I could see through her eyes, I wish I could literally (and figuratively) see what she sees. How is her vision, how does the nystagmus (her eye shaking) affect her vision, does she have voids in her vision, does focusing on books give her headaches or is it hard or require so much effort it exhausts her eyes. I just wish I knew. But I am thankful! I am thankful!

I am amazed by Katie's fortitude and perseverance! She learns more each day! She has not let only one good working hand slow her down or deter her from her goals! She is amazing, she is determined to dress her self. Try putting your pants and underwear on with one hand. She will open her left hand with her right to hold a slinky or hold on a swing or eat snacks. She is so sweet, beautiful, amazing, and wonderful! Katie is simply stated a joyful gift from God! 

Tomorrow we meet with her neurologist to discuss her MRI results. Please pray with me for Katie! Thank God for the small movement in her left thumb and pointer finger! Thank you for her struggles that have made her so strong! Katie will do great things because before the age of three she has impacted hundreds of people! Pray for her vision and vision processing. Pray for her left hand! Pray for no more seizures! Pray for MRI results! Pray for her transition to the school district and my reluctance to separation. It all hurts my heart, but God is taking care of her though I can't always be there. Thank you! I am thankful for her, all that has happened to her, you, and her doctors, nurses and therapists! Thank you!