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!!!

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!!!!!

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!!!

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!!

Ophthalmologist

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!!!

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!
Love,
Katie's mom, Jessica

WALKING!!!!!!

Guess who is walking?!?!
Yeah!! She is still scooting and froggy hopping, but now she is walking too! She still has a lot of fine tuning to do with her left foot/stride. But I have tears in my eyes!!! Thank God for Katie and all her miracles!! Thanks be to God!!
I also need to update you on her vision. She went back to the opthamologist in September and back again in October. No real concern at the September appointment,even though her eyes were both turning left spontaneously. He checked her nerves in her eyes and everything was normal. We went back in October to check her eyes again because now her eyes are crossing. He was concerned now with two new eye movements in such a short period of time. The opthamologist now wanted to contacted Katie's neurologist. That was the longest 5 days since the NICU. Knowing everything was probably okay, but wondering!?! So, when the eye Dr. finally called the consensus was to do a CT scan. Long story short, CT scan was unchanged from scan at a month old. This means Katie's shunt is working well and there are no brain problems. So, our prayer is that Katie's strange eye movements are just her brain continuing to rewire itself. Presently the worst case scenario is that her eyes may need common corrective surgery to straighten her eyes.
So, continue to pray for vision to reach 20/20 and her eyes to uncross themselves! Continue to pray for her left leg and stride and walking and her left arm to loosen tightness and rigidness!
Thank you for your prayers!!
Thank God for answering them!!!
I LOVE YOU!!! I APPRECIATE EVERY KIND THOUGHT AND PRAYER!!! I LOVE YOU!!

Encouragement

Yesterday I was encouraged! We have been wondering if Katie's vision is impeding her walking. Yesterday a O&M (Orientation and Mobility) therapist came to our house for Katie's vision therapy and she had many encouraging thoughts! Her job is to help blind or visually impaired children navigate their homes, environment, and world. She came to meet and observe Katie and she was very impressed!! Her opinion was that Katie is meeting a need through scooting~ a vestibular or sensory need. She thinks that her vision is not the reason that she is not walking. We know her vision is MUCH improved, but I didn't really know how to gage her depth perception. The O&M therapist watched Katie scoot, climb, and cruise, she played with her handing her toys and having Katie hand them to her! Through this time her opinion is that her depth perception is just fine. She is able to put pegs accurately in holes, hand toys directly to her hand (not over estimating or underestimating distance of her hand), and Katie didn't hesitate at transitions in flooring. She thinks she is just satisfying a need by scooting, so we can work with her OT to find other ways to satisfy it or she will just mature to walking or both. But encouraging news!!! Now we just have to wait!!! :-) Thank you for your prayers!! Keep them coming!!! Praise God for ALL He has done!!! Thank you!!!

Update on Katie's Eyes

Katie had a good report from the ophthalmologist. He examined her eyes, dilated them and found no swelling or pressure on nerves, no change in the visual aspects. He repeated she doesn't need glasses and that her vision is much improved and her visual response is great!!
He can't be 100% confident that there is no increased pressure in the brain, but he says her eyes do not seem to be a sign of hydrocephalus. Keep praying, but for now everything looks good!!! Thank God!!!

Katie's Eyes

I am writing an update to thank you for all your prayers for Katie's vision!!! At the beginning of summer her vision was rated at a 3 month old level. She could barely see 20-30 feet away. Yesterday we were at Disneyland and she spotted and followed some ducks flying overhead, 50-75 feet up!! I am confident that she can see me up to 50 feet away at home as well. So, praise God for the continued healing!!!
Yet, I am also writing to ask for more prayers!! My initial thought was to wait to report on this prayer request, but I am working on being honest and upfront about my struggles. So, please read and pray...
Katie's eyes have been gazing to the far left. They go in unison and just randomly go off to the left, no one therapist had seemed concerned. It is not a seizure, but I messaged the optometrist even though we have an appointment Oct 14. He got back to me right away and we have an appointment tomorrow. He is concerned about pressure on the nerves or pressure on the brain. So, please pray that it is nothing, just the brain rewiring or reconnecting. I will not let my thoughts wander to what increased pressure means until it is confirmed. So, please pray for the eye turn to be nothing, but please just pray!! I am glad her appointment is tomorrow at 9:45am, it will take at least an hour as he dialates her eyes to examine her nerves. I will update you as soon as I can!! PRAY!!!!! PLEASE PRAY!!!!!!

Katie's Accomplishments

Katie is still working on walking, but I wanted to share the many cute things she does well!! Katie has been complimented by many on her posture! Often children with visual impairments have a certain posture, but Katie has great upright posture!! Katie often uses two hands to play!!! She definitely favors her right, but often uses both hands very well together!! Katie loves putting on necklaces and loves her beautiful bracelets!! She loves to dress herself- she will put her shirt on her head and will put her right foot into pants successfully!! Pray that she remembers her left leg and foot more. Katie also loves shoes!!!! She will find everyone and anyones shoes and put them on!!!! She has asked her therapists to take off their shoes, so she can wear them. Katie can communicate very well, she does not have a large vocabulary, but she is a great communicator!! In the last week Katie is starting to focus more on her vocabulary~ She is working on up, hot, eat, cup and today's word was bus. She is taking special care to pronunciation, it is quite humorous!! Katie is a cute, lovely, sweet, spunky, adorable little girl!! The Lord has blessed us and shines through her!! Praise the Lord for our little miracle!! I give thanks everyday!!!

Getting Ready to Walk

Katie is getting ready to walk. She is strong and is standing more, cruising more and taking a few steps here and there. She will stand up in the middle of the room and take 2-4 steps, but it is random and ONLY when she wants to. Of course, she won't take steps once I get out the camera! Katie doesn't stop moving. She is scooting, froggy hopping, climbing, cruising, swinging or sliding all day long. She loves to copy her big brothers and tries to keep up with the kids. She loves to go outside whenever there is an open door! She is getting stronger every day! Katie can climb up her little slide and slide down by herself over and over again. Today she mastered climbing into the big swing set clubhouse. She is improving in fine motor with big beads and peg boards. She loves to color!! Katie's vocab is expanding daily. She really can communicate quite well. She is excited when you understand her. She is VERY, VERY opinionated!!!! Katie loves to bounce, dance and act silly. She is amazing!!!! When she is screaming because she is not getting her way, I have to give thanks that she cares and knows and is aware. I thank God that she has made such great progress!!! She has come a long way since last year this time!!!
We can pray that Katie's vision is improving greatly daily, pray for her depth perception, nystagmus, and that her vision is not impeding her not walking. Pray for her reflexes, for her safety, she will need to catch herself if she falls while walking, but her reflexes are slow and her left arm is really slow sometimes. Katie needs to continue to strengthen her hip muscles and improve her balance. Pray for Katie's appointment with on September 23 with orthopedic. Pray for Katie's Optomolgist appointment on October 14. Gives thanks!!!!! Thank YOU for all your prayers!!!

18 Month Old- Really?!? Already?!?

Katie now 18 months old! Wow! Where has the time gone? This is the longest shortest 18 months ever!! This month is the one year anniversary of Katie staring therapy! So, that means evaluations! That means looking closely at everything Katie can and CAN'T do. Well, let's start with Dr. visits... her vision is at a 3 month old level, she has a small head, she is 2% for weight (20lbs. 3ozs.), she is weak on her left side, not walking, BUT she is doing GREAT!!!! Her neurologist is happy she is who she is!!! His quote was, "It could have been much, much, much, much worse." I could have done without quite so many much's. But what great news! Her evaluators all agree that if you read her medical history, she is not that child any more. She is a little miracle! She should be a lifeless child, with little movement and cognition. Yet, God has healed her and is still healing her!!! Her severe brain damage is unknown to people who meet her today! She is a joyful blessing! She is FULL of LIFE!! Katie is very cognitively aware and is an active, quick non-stop scooter and climber!! She has an attitude and a sense of humor!!

Now, to the evaluations... Katie is NOT walking. She has taken about 4-5 steps, but her steps are few and far between. She is making progress and is strong, but not yet close to being a confident walker. Katie is being referred to a pediatric orthopedic. But Katie IS scooting- fast and everywhere, she started crawling -awkward, funny half bear crawl/bunny hop, climbing- she will be on top of the kitchen table if you don't push in every chair, standing- from sitting and from middle of room, and talking- communicating and repeating.
She is becoming more independent. She is becoming a little girly girl. She loves her bracelets from her aunt, necklaces and shoes.
Praises- Katie is doing so well, she started crawling and is developing more strength, she is taking steps and standing, enjoying Disneyland (last month she was indifferent, less interested and disliked most rides, this week looking around and totally enjoying and interacting on rides), Katie's vision therapy was increased to twice a week (totally unexpected!!!!), thanks to Blind Children's Learning Center and Regional Center, wonderful family and friends
Prayer requests- VISION, that she will make significant progress by next eye Dr appt in Nov., that she starts walking, and does not need braces or special shoes.
THANK YOU for your prayers!!!! Thank you!!!