Monday, December 10, 2012

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!

Friday, November 30, 2012

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

Tuesday, November 27, 2012

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!

Wednesday, November 21, 2012

Pictures of Katie's last 3 week journey


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!

Sunday, November 18, 2012

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!!!!

Wednesday, July 11, 2012

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!!

Tuesday, June 5, 2012


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!!!

Tuesday, April 17, 2012

Katie in her sweet adorable terrible twos

I am confident in God's plan for Katie!! If he doesn't heal her completely, it is because He has an even greater use for her. I have seen His miracles. I see a joy in Katie that is not of Earthly measures. If you have met Katie you know what I mean. Her strength is made perfect through her weaknesses by His power.

Katie will forever be a testimony of His faithfulness!!!
Just in case you do not know about my Katie yet, this is a recap.
Katie was born January 22, 2010 and at birth her head circumference was a little large. At 12 hours old after an ultrasound of her head, they reported that Katie had a stroke and had a severe brain bleed. She was in the NICU within an hour and they continued to run more tests. After a CTScan and MRI they determined Katie had a stroke 2-3 weeks in my womb before she was born. Katie had severe brain damage mostly on her right side which caused significant left sided weakness. Katie's vision was significantly impaired and we still do not know the quality of vision she has today. Katie's current diagnosis are cerebral palsey and visual impairment. Within the last 6 months Katie has made progress in leaps and bounds. She has started walking, then running, she has greatly improved communication skills, and wonderful cognitive skills, she is now paying attention to books and potty training. Last year Katie couldn't see across the room, drink from a cup or walk at all.
I praise God for her trials because I can see them shaping her into an amazing miracle and blessing who will change the lives of so many people. I thank God for my trials, I can see my wonderful, tremendous growth. Katie's life has changed my life forever!! Thank you God for the strength to survive these last two years!!
I would greatly appreciate your prayers and I have always seen and felt them renewed with each update. Katie needs prayer for her vision. She will need corrective eye surgery to fix her eye crossing. Please pray for the torturous eye patching that we are supposed to do every day for at least an hour. Pray that she leaves the patch on. Pray for her future ophthalmologist and neurologist Doctors appointments. Pray for improvement on her left side in strength, tone and coordination. Pray for pooping in the potty. (I have to add it in.) Continue praying for no seizures, because of her brain damage she is at high risk, but likelihood decreases with each day. Pray for her shunt, that it continues to work well and function properly. Pray for her dad and I to have patience, strength and energy to deal with Katie's persistent, high energy, highly opinionated and joyful personality.
I am thankful for so much, here are a few things!
I am thankful for Katie's unbelievable progress!
I am thankful for Katie's strong, caring, kind, competitive, never give up attitude!
I am thankful for an amazingly supportive family and friends!!
I am thankful that Katie can walk, talk, and see!!!!!
I am thankful for YOU!!!
I am thankful that you took the time to read this and pray for my Katie in the midst of her sweet adorable terrible twos!!!

Tuesday, February 21, 2012

The last month

The last month has been very busy!! Katie got her AFO leg brace for her left leg and tolerates it wonderfully!! We had a big fun birthday party!! Katie had lots of fun with friends and family! Katie had her 2 year check up! She is still very petite! 33" tall and 21 1/2 lbs. The Doctor will keep an eye on her weight, but is not worried as long as it keeps going up! She had her neurosurgeon appt, almost exactly 2 years from her surgery. He is happy with her development and progress and we will only have to go back once a year! Then Katie had her orthopedic appt and they checked her brace, made a few adjustments and improvements!!
Next week we go back to ophthalmologist. Pray as we discuss any surgery possibilities!!
Your faithful prayers work!!! Everyone is impressed with Katie from her progress to how she tolerates the eye patch and brace!! Please keep praying!
Oh, and we started potty training!! Katie is great with peeing in potty, but we are working on the poop. I am not complaining because she gets it overall, so when she is ready to do it all, I am sure she will!!
Thank you!! I love you!! I am thankful for you and your prayers!!!!!

Tuesday, January 17, 2012

Katie and her almost two update

Katie is doing amazingly, wonderfully perfect with patching!! She goes on with life with no complaint! We are thankful for multiple reasons because this means her vision is comparably equal in both eyes and we don't have to struggle with Katie!! Your prayers worked wonders!! We are still waiting for her leg brace, but she is walking more stable and her left leg is not out so wide. Katie is making strides in strength and development!! Her communication is great!! Her vocabulary improves daily!! She is putting two words together often and formed her first sentence, "Mommy peepee in pots." :) Embarrassing first sentences for Mommy, but way to go Katie!! She is very interested in potty training, so pray, as that will come very soon!!
So, keep praying I can see them working!! Pray for continued success with patching, pray for eyes and vision. Pray for walking and adjusting to brace when it comes!! Pray for potty training and for Mommy and Daddy's patience!!! Thank you!
Thank you!
Thank you God!!!

Monday, January 9, 2012

Two Years Old

Two Years Old!!!! What?!? My baby girl!!! I can't really say where has the time gone because this has been the longest two years!! Wow!!! Life changed so much two years ago! A great pregnancy, my water broke, a twice as longer labor than Johnny with weaker drugs and awful pitocin, and a serious threat of cesarean section, but natural and wonderful overall!! 7 family members with us at the hospital until at least 2am. I love my family!!! I could not have survived the last two years without my family and friends!! Over 40 Dr visits in 2010 and around 75 therapies, 20 Dr visits in 2011 with nearly 200 therapy appointments. Life has changed!!!
But I AM THANKFUL!!!!!!! So thankful!!!! Thank you God for the miracle in and through Katie!!!
My daughter had a stroke with significant brain damage and is walking, communicating, understanding and beautifully full of God's great JOY!!!! Katie's future is so big and bright!!!
I am not saying I don't have prayer requests for complete healing, but it could have been much, much, much worse.
I have grown immensely in these last two years! My heart reaches farther, my prayers are constant, I am confident in my God and my Faith!! There is no scientific reason for Katie's stroke or amazing, awesome recovery, but God performed a miracle all around with Katie's birth!!
The 16 days in the NICU were the most difficult, gut wrenching, tear filled, stress filled, emotional roller coaster ever. Seeing your two week old after surgery rips your heart out as it takes your breath and leaves you without words! But Katie is Katie- strong, joyful, adventurous, independent, amazing!!

Thank you God for our big problems because we will have a big future!! Thank you God!!


Today we went to eye dr to follow up on Katie's eye crossing. He immediately noticed the eye crossing had increased and said he'd dialate her eyes then we'd talk about what to do after. He looked at her eyes and reconfirmed that she has no prescription and does not need glasses. Katie's vision delays are related to her brain damage not her eyes. He said Katie will more than likely need eye surgery to correct her eye crossing. In the meantime we have to patch her right eye for an hour a day for 8 weeks!! This will be an immensely long 8 weeks. The Dr is wanting to get a better idea of both eyes and their muscles during these 8 weeks. He doesn't want to correct only the left eye to have the right start to cross after the surgery and need more surgery. Please pray! Pray Katie accepts and adapts to wearing the patch well and quickly! Pray for our patience, endurance and strength during these 8 weeks and through the surgery. The surgery is most cosmetic and is a routine, simple procedure. I will try to think as little about it until the day it happens! But I'd be lying if I said I'm not nervous or apprehensive. It is my baby girl! I still can not get the first look at her after her shunt surgery out of my mind! I greatly, hugely, enormously appreciate your prayers!!! Also, pray as we also introduce her brace in the next week or two!!!

Sunday, January 1, 2012

A look back at 2011

2011 has been a year of great strides for Katie. Last new year Katie was just starting to army crawl and she could sit up. Her vision was at a 3-6 month level. Katie had a few words in her vocabulary. Her left shoulder and arm were very tight and postured tense and tucked in a lot.
Katie went from army crawling to scooting, some froggy hopping here and there and in November Katie started to walk! She loves to walk and climb. She loves to walk up and down steps, and is constantly on the move!! Katie is a very, very busy body. She can pick up the stool and walk with it to get into drawers in the kitchen or to the sink. Katie got fitted for a brace this week. It should be ready in two weeks. She should be showing it off at her birthday party. It will be worn when she is awake throughout the day. They are trying to correct her left foot and ankle, her Achilles tendon is tight and she turns her foot out, and hyper extends her knee. She bears most of her weight on her right leg. She still attends physical therapy and occupational therapy twice a week at CCS.
Katie's vision was measured on May 31, 2011 at a 3-6 month level. Her vision therapy was thankfully increased to twice a week. Her vision and brain connections for vision are still changing. Her vision has improved, but I do not know how much. She goes to the eye doctor next week, Jan 9. I am interested in what he will have to say. I am still concerned about her vision. Her eyes are crossing very often. I am praying for complete healing of her vision, but I am accepting that she may truly be vision impaired. That is difficult to process. But Katie won't let anything stop her from thriving and enjoying her beautiful life.
Katie's vocabulary has grown a lot! She doesn't talk a whole lot, but she can communicate very, very well. She loves to say hi to everyone and bye. Her favorite word is PLEASE!! She can say it loud or sweet and she will hold it out to a 'pleeeeasssse'. And Katie assumes that she will get whatever she wants when she says please. Katie is very independent, very opinionated, very stubborn. She has her own individual joyful personality. She understands much more than we give her credit for. She amazes me daily with something. Her neurologist said he is very happy with her progress. He terms it as Katie will have her own definition of normal. She is doing great. Please keep praying that she continues to progress and that she doesn't have any seizures.
Infant massage made the world of difference in her left shoulder and arm. She still has clear weakness in left arm, but she uses in regularly. She has only a little increased tone in left arm.
Prayer requests to start the new year~
*Katie's eyes and vision, wisdom for opthamologist, that eye crossing corrects and she doesn't need surgery
*Katie's left leg, adjust to brace well, strengthen and correct left leg issues (Long term goal to hopefully no longer need the brace)
*Katie's overall progress continues
*Katie's mom and dad strength for life, patience for Katie's personality, endurance for the draining schedule and doctor's appointments, peace with Katie's normal
Thank you!
Katie's mom, Jessica