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!!

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!!

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!!!

Recap of Katelyn's 3 Years

Add caption

Add caption

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!!!!

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!

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!

The Last Month

Katie is doing great! She is amazing! I wish we all could have her attitude of joy, determination, and adjustment. She has not regained use of her left hand. She has adapted in so many ways! She is using her right hand to isolate fingers on her left hand to touch things. She uses her mouth, lap, teeth, or left arm to take place of using her left hand. She is amazing!!! Simply amazing!
Since she got sick and started having seizures Katie's speech and language has exploded. She can tell you what she did that day, sing more than three words of a song, have a conversation, and repeats more and has longer sentences. So so much more than a month before. The neurologist said seizures can stimulate areas of the brain and it seems it stimulated her speech. Her vision is unchanged. Her strength seems to be back. She has muscle spasms in her left hand at bedtime, so she wears a resting splint to help stretch and relax her hand. She will remain in a leg brace for at least 6 months more, so she will have a new brace soon.  There have not been any side effects of the anti-seizure medicine except a little drooling, and I am fine with that! Most side effects show up in the first 4 weeks, so keep praying for no side effects!
Overall Katie is great, wonderful and perfect; we are just waiting for her left hand! Her orthopedic doctor said he has seen viruses cause paralysis, so that could be what happened here. Hopefully we will find out what happened. In the meantime we pray, take her to therapy, work hard at home and pray some more and wait! Please keep praying! Pray your hearts out for our little sweet girl and give praise for her and her progress! Thank you!
We have our next neurologist appt Friday 12/14/12 at 7:30 am. So, keep praying! GIVE THANKS AND PRAY!!! Thank you so much! You will never know how much your love and support means to us!

We have also started the paperwork for her transition into the school district at 3 years old. Pray for that. Also please pray for me- I have been having health issues that I think are stress related. Mostly tummy stuff that comes and goes to much to be any virus. I truly feel at peace, but my body must still be dealing with the stress. Thank you!

Dear God,

Last night Katie prayed for the first time. I asked to pray for her arm and she said no and sat up and said "Dear God." Then she looked at me for a little help, I said "Please help" and she echoed and finished it off with "Please help my arm feel better. Amen" It was moving and sweet, but it made me sad because deep down I want to make her hand better. I am her mommy I want to make her all better, but reality is no matter how hard I try, I can't, but my prayers can and God can! I pray throughout the day for God to heal her. I know and trust that He is with her and He is taking care of her. He has healed her once, He will do it again!
I understand why God says he wants us to have faith of a child because I see Katie's faith and Johnny's faith blossoming into beautiful hope, faith and love!
Dear God, Please help Katie's arm feel better. Amen

Overwhelmingly Thankful!

So overwhelmed by reality!
Katie's Ophthalmologist took the time to look at Katie's MRI from just after Katie's birth. He showed me where the optic nerve runs from the eye to the back side of the brain where our brain processes what we see. He said he can see the optic nerves and that they were affected by the brain damage. As he scrolled through the image of her brain the difference is clear between the dark spots (dead brain matter) and the living working healthy brain matter. It is overwhelming to see the amount of dark spots in her brain. Her chart says severe brain damage, I know she has severe brain damage, but to really see the large amount of brain damage is absolutely overwhelming. Her seizures have not seemed to affected her vision. Thank God! He does think she has some peripheral voids, but it is a miracle that she can see as well as she does.
There is NO ABSOLUTELY NO medical explanation for Katie and her thriving beautiful amazing progress. It was a bit disturbing that the Ophthalmologist has never heard of seizures causing this kind of paralysis of a specific limb. It is more disturbing that neither have any of the other doctors, nurses, or therapists that I've talked to. I pray that it is the seizures, because it is very scary if it is not. Pray with me that the seizures stop and she starts to use her left hand again! Pray that it is not permanent damage!! Pray for some movement, any movement in her hand!! Pray!!!! PLEASE PRAY!!!!! Our neurologist did not want to discuss the what ifs, so please pray we don't have to explore there!! We have seen improvement in her left shoulder and elbow and leg movement. Her hand is more relaxed but no movement! Pray! Pray hard, pray often!! And GIVE THANKS!! I thank God everyday and even more today because after seeing inside Katie's brain I know GOD did great work at rewiring her brain! He made the most of her healthy brain and has given her such great potential!!

So continue to pray for no more seizures, pray for her medicine to work, pray for movement of her left hand and continued progress on left side, pray for no side effects of medicine as we continue slowly increasing to optimal dosage amount, then give thanks for the great abilities of her healthy brain, give thanks for the rewiring of her brain, give thanks that she can see, walk, talk, communicate, give thanks for Katie! And I will give thanks for you!! I couldn't do it without you!
Thank you!
Thank you a thousands times over!

Pictures of Katie's last 3 week journey

ThankFULL

The EEG did show seizure activity that funny as it is aren't directly related to the staring spells that caused us to have the EEG. The seizures are non-convulsive or absent seizures and were triggered by the virus that she had two and a half weeks ago. The weakness is one sided because her stroke effected the right side of her brain and the seizures are happening only in this brain damaged area. The weakness should improve as the medication starts working and the seizures stop. The main side effects of Keppra her medication are mood swings, weakness, and drowsiness. Pray for no side effects and no rash! Pray for no convulsive seizures! Pray for quick control of seizures and quick improvement of left sided weakness! Pray for our family! Pray for me- I am overwhelmed, exhausted and sad, but very thankful for Katie's general great health, her life, progress and a treatable diagnosis! God is good He has given me the strength through this all to do more than just survive, to thrive! My Katie is a gift and a blessing! I can't wait to see what great things she is being made to do and the beautiful woman she is growing into! I am sad today, but joy comes in the morning! I have so much to be thankful for this Thanksgiving!

Katie and Her Continuing Journey

Katie needs more than one update to bring up to date! I will go start from the last two weeks and next update hopefully fill in the last four months. The last two weeks have been the most eventful to say the least, since the first two weeks! Two weeks ago Katie was coming down with a virus, but was in perfect health otherwise- happy, healthy, graduated from her regular therapy and doing awesome and as typical as she could be. Then Monday came and she slept all day and Tuesday she slept most of the day. Katie could not physically walk more than two steps without falling. She was so weak she could barely walk, let alone play Monday through Wednesday. Wednesday the Doctor saw her and we just agreed she was wiped out by the virus. I brought up Katie barely using her left side and we just brushed over it that she was just weak overall and it was more apparent on her already weaker side. The problem was as days passed it wasn't getting any better. I contacted Katie's neurologist and he said to update him in three days and go in immediately if her weakness got worse. In the next two days it didn't get worse, but it didn't get better. Last Sunday night Katie started crying inconsolably and I knew it was time to go to the Emergency Room. In 7 hours they took chest x-rays to rule out pneumonia, catheter for urine sample to rule out urinary track infection, CT Scan to rule out another stroke, hydrocephalus or shunt failure, blood tests to rule out many known strands of viruses and other blood causes, and respiratory swab to rule out flu and RSV and they successfully ruled out EVERYTHING they tested for! Katie had a minor ear infection and possibly a touch of pneumonia, so they admitted her to the hospital to give her antibiotics and monitor her. None of the Doctors could explain her left side weakness other than maybe weakness from whatever virus she did have. We left the hospital comforted it was not another stroke and her shunt was working properly!
Her pediatrician scheduled the EEG at her check up on Thursday when Katie spaced out and took a few seconds to respond. It could be an Absent seizure, which are seizures that are not convulsing but involve a blank stare and non-responsiveness for several seconds.
So, now it is a week after I took her to the ER and she is healthy again, a small occasional cough but overall normal health, but she still is not using her left arm. She can move her left arm if you ask her to raise it up, out, or give 10. But she is not moving her hand or fingers at all. It is absolutely heart wrenching to watch her use her right fingers to move her left fingers. She does not open her hand at all. Two weeks ago she loved to play with Legos, but now she uses her teeth to grip the block to take them apart and can't hold the blocks to play, stack and build. She has adapted to lay on the couch and rest the Itouch on her left forearm to play games on the Itouch. She will hang from the bars on the swing set, but only with one hand, where two weeks ago she would hold on with both hands and swing her feet up above her head. She will not push up on both arms and can't catch herself as she is falling. Katie has adapted in ways that are amazing, but to see her regress to where her left arm was over two years ago before therapy is painful and frustrating and so discouraging. We worked so hard, she worked so hard, so many therapy appointments and so much hard work... gone.
But my HOPE comes from the Lord, He healed her once He can do it again!! So we wait and we pray!
Tomorrow we will see the therapists who saw three weeks ago and they will see her regression. Tuesday we get an EEG to rule out any seizure activity. For the EEG test they will measure her brain for any seizure activity, it is a sleep-deprived test where the 24 hour period before the test she can have half her normal amount of sleep. So, pray tomorrow as I am not sure how I will keep her up to midnight and keep her awake from 5am until her test at 10am.  Wednesday we follow up with her neurologist. The next Tuesday we see her ophthalmologist, which was a scheduled routine visit about her vision, but now I have some concerns of changes in her vision.
So, now we continue to pray!! PRAY hard!! Pray for Katie, her left side, her vision, her unexplained weakness, for answers to what happened and why, for her EEG and pray for wisdom for her wonderful Doctors and us! THANK YOU!!
You are a wonderful gift to me, to Katie!! Thank you so much for all your love, support and prayers!!
YOU are part of Katie's MIRACLE!!!!