Recap of Katelyn's 3 Years

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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!!!!

Katie almost 2 and a half years old

Fun at the beach!

My Miracle

Every time I look at Katie I stand in awe of God's miracle! He has healed her and allowed her brain to rewire in many that are medically unexplainable! He has filled her with such a God given joy that makes every person she meets smile! I dare you to stay in a bad mood when Katie smiles at you!!
Katie still has her issues and obstacles, but overall she is an amazing miracle! Katie is almost 2 and a half and has only been walking for 7-8 months. She has only really started talking about 4-5 months ago. Last year this time Katie could barely see across the room. Katie medical reports list her diagnoses. Katie HAS severe brain damage, her MRI remains unchanged from birth, but God rewired her healthy brain.
I stare at her playing, talking, laughing, running, jumping, climbing and stand in utter amazement at her. She is amazing!! God is amazing!! Her father and I do our best, but our strength lies in God!
Katie's update... is her vision is still questionable, but she can see a plane that is flying low and she was able to see the fireworks! Yay! Katie may still need surgery to correct her eye crossing. And Katie's vision is technically good, but it is the transfer of images from her eyes to her brain that is bad. Glasses can not help her brain process her vision better. So we pray her brain continues to rewire! She will continue to get vision therapy from Blind Children's Learning Center until she is transferred to the school district.
Katie is doing well physically. Her orthopedic doctor says in 6 months he will see if she even needs a new leg brace at all. Her physical and occupational therapists are in disbelief at her abilities. Katie is finally cooperative (most of the time) in therapy. They say she is the best way to start their Monday mornings! She is capable of most everything! She is improving at climbing up and down stairs. She runs and jumps! Her therapists have had to chase her down during therapy. Katie will have physical therapy and occupational therapy once a month from August until she enters the school district at 3 years old. That will be an adjustment as the last 2 years we have had 3-4 therapies every week.
Katie's neurologist was very happy with Katie's progress. He thanked us for never giving up on her. We just need to keep stretching her left arm and leg and encourage her to use her left arm as much as possible. Katie uses it all day but her left arm is stiff, awkward, weak. BUT she willing uses it!!
Thank you God for my beautiful sweet amazing miracle daughter!! Thank you for my heart and growth!
My heart has grown, as well as my prayer list! I continue to pray for other children and parents who have regular therapies or multiple doctors or surgeries or diagnoses or hospital stays!! My heart is with you!! May God bless you!!
Thank you for all your faithful prayers!! Thank you for being part of Katie's miracle!! Thank you!!

Thankful

I am overwhelmed with thankfulness!! I am looking back. Six months ago Katie was just starting to walk, now she is running everywhere and can walk up and down stairs. At Christmas I was excited when Katie said "mouse" and "heart", now Katie can identify more than a hundred things. She can tell me, "Mommy push swing high please." Last year Katie could not see across the room, now she can point to the moon!! Her vision is still a large area of concern. She has trouble seeing clearly from a distance. I accept the fact that she may never be able to drive a car or see beautiful mountains clearly. But I am thankful!! My daughter can see!! My daughter can walk, run, talk and give thanks!! God can continue to work miracles in and through Katie!! I know He will!!

Prayer requests would be for Katie's brain. Katie's eyes are healthy and her vision is perfect until it transfers images from her eyes to her brain. Pray the connections in the brain from her eyes to the place in her brain that process her vision is restored! Pray for complete healing of her brain!! And give thanks to our God who has restored my beautiful baby girl with extensive brain damage to a healthy beautiful toddler with wonderful amazing brain function!!

Thank you God for my beautiful baby girl!! May she be a testimony of your love and faithfulness!! No amount of scientific explanation can explain Katie's amazing progress!!
Thank you God!!!

Thank YOU for all your thoughts, love and prayers!!!