Thursday, November 10, 2011


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!!!

Thursday, September 29, 2011


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!!!

Thursday, September 22, 2011

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!!!

Wednesday, September 21, 2011

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!!!!!!

Monday, September 12, 2011

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!!!

Saturday, September 3, 2011

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!!!

Tuesday, August 9, 2011

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!!!

Tuesday, June 21, 2011

Katie- 17 months old


Katie is doing great!! She is drinking better, she started crawling, she started standing independently, and she is talking a lot. Katie sings "Row, Row Your Boat," well, at least the first line. She will cover her face (using two hands more often) and will say, "Where's Katie?" I thank God because with each update the prayers are sent up with renewed strength and almost immediately after the update Katie is doing a new trick!! Katie is called a "Super Star" by her therapists, they are amazed by her communication skills and her strong personality! I find it amusing that Katie seems to be revisiting all her missed milestones, she started crawling and rolling and laying on the ground and kicking her feet.

Katie's therapists says that her first steps are coming soon! Her physical therapist works on developing strength in her hips and left leg. Katie cries and screams through most of her physical therapy appts, but this is when she works the hardest! Pray for strength for her little legs and that she walks when the time is right!
Pray for Katie's vision and qualifying for continued vision therapies and God Willing some additional vision therapies! Pray for her brain and continued rewiring and repair! Pray for continuing speech development and our ability to work with her very strong personality!!

Thank you!! I look forward to her new "tricks"!!

Monday, June 6, 2011

Thank you for your Prayers !!

Today Katie drank 2 ounces consecutively from a cup!!!! She hasn't done it again yet, but at least we know it is possible!!!! She can drink!! Katie just needs to get the rhythm of consecutive swallows and stick with it!! Keep praying!!!!
Katie has also started to stand alone!!! She will do a bear crawl position, on hands and feet, then just stand up!!! It is only for a split second, but it is huge progress!!! Her neurologist goal was to be standing independently by 18 months, and there is no doubt she can do it!!! Just pray for continued health, continuing function of the shunt and continued absence of seizures!!!!
Katie has also cut two molars, which helps explain her explosive attitude moments this past week!
I researched to understand more of Katie's vision. The optometrist believes her vision was around 20/60. This means that her vision impairment is on the mild side, but that mild vision impairment means she can only see about 20-30 feet away. The prognosis is unknown because her brain is still has great plasticity (or ability to rewire and reconnect itself). We need to continue to greatly encourage her to use her vision to promote the rewiring process, and to not use her other senses to overcompensate. We have to encourage her to notice the details of life with her eyes as much as possible. Glasses will not help Katie's current vision impairment, since the vision impairment is located in her brain, it is more of a neurological vision impairment. The stroke and the bleed damaged a lot of the brain tissue between the eyes and the location in the brain that processes the images taken in by the eyes. This is also why she has the nystagmus.

Tuesday, May 31, 2011

Katie at 16 months old

Katie is now 16 months old. She was dedicated to the Lord one year ago yesterday! I can still call her our little miracle baby! I had never truly thought of her that way until we were standing on the stage and Pastor Todd Molter said it. But it is the truth! Katie is our beautiful bright wonderful little girl!! Katie is so amazing! Katie is starting to cruise (walk along furniture, etc. while holding on). Katie is more comfortable going to the left than the right. She has issues with shifting her weight. She tends to use her left leg more as a sturdy pivoting point than a useful leg, almost like limping. She can walk holding on to our fingers, but her stride is significantly shorter on the left. So pray for improvement of muscular strength and stride on the left and learning to coordinate both feet together. Also, they have started using Kinesio tape on her left leg to try to encourage her to point her foot and push off as she steps. They might use it on her arm to encourage supination, or in English, turn her hand so the palm can face up. Pray for her left arm, it stiffens up quite significantly when we do not stretch her enough. Pray that we remember to continue to stretch her even when her arm is relaxed and improved and that it stays loose and relaxed more and longer!
Katie's biggest struggle has been drinking. I touched on it last time, but now I am asking for more prayer. Katie is still primarily nursing. We tried to wean, but she is not taking adequate liquid from other sources to stay hydrated. We have talked with her CCS occupational therapist, OT, and I took her to see a Speech and Language Pathologist, SLP, at Kaiser and both are really at a loss for what to do. I have asked some friends that are OTs and SLPs and they are at a loss for what to do. I have been given many suggestions, but so far no improvement. Katie is able and capable of drinking from a cup (open, straw, or sippy) but she has trouble swallowing the liquid once it is in her mouth, so in other words, she sucks it to her mouth, swallows a sip and the rest pours out on her clothes. The therapists thoughts are that it is not a swallowing issue since she can manage her saliva, breastfeeding and all food. The only thought of what it might be is increase desensitivity in her mouth, so she is familiar with breastfeeding, but all other liquid she can't feel properly in her mouth. Or the other debated possibility is oral aversion, where it is a sensory issue and she doesn't like the way it feels (I do not think it is this, since she has absolutely no other sensory issues, but always a possibility). But either way our only thing is to keep trying and stay encouraging. It is very frustrating, not only because she is such a fast learner, but she hasn't 'got' it yet, but it is difficult to spend 10-15 minutes or more repeatedly throughout the day trying to get her to drink and she might get down 1/2 - 2 ounces. (She needs at least 27 ounces a day.) Please continue to pray!! Pray she manages consecutive swallows from a cup!!
Then today I took Katie to see the optometrist at Blind Children's Learning Center, BCLC, they provide Katie's in home vision therapy. It is an amazing school, simple and modest with great resources, wonderful teachers and awesome therapy units. So, I went in hoping for some news of improvement. But I left realizing that we have a long road ahead of us. Katie has a significant amount of visual impairment. She has the nystagmus, (uncontrollable, involuntary eye movement) which makes it difficult for her to focus and retain the image in her sight for an extended period of time. She also has a fair amount of vision loss. Her eyes are healthy, but the stroke caused significant damage along the pathway from eyes to the brain where she processes vision. I told the optometrist that sometimes if I stand 30 feet away she has a hard time finding me. So, it is because it is hard to see that far for her. She has a small prescription of farsightedness, but it is within normal limits of her age range. So, please pray for her vision. Please pray for improvement!! Pray that God continues to repair and reroute the pathways in her brain!! Please pray!! Please Pray!!!
But also thank God!! Thank Him for her sweet determination, for her cognitive abilities, for her desire to move and explore, for her speech and her wonderful cuteness. Thank God that she is visual and CAN see!!!!

I wanted to share some cute tidbits. Katie can say dance and will dance, she will say bounce and bounce. Katie can repeat several words, even her therapist hear it- more, help, open, close, plus many more everyday words. The other day she pooped and was scooting around the house saying, "butt," (we say it is time to change your butt). Then the cutest thing lately is washing her hands. She rubs her hands together and I ask her if she wants to wash her hands, she'll say wash and scoot to the bathroom and pull up on the stool in front of the sink, oh, and don't forget to use the soap, she'll squeal if you try to skip it. Oh, then she has learn where her tongue is. I will have to post a video!! It is too cute!! Thanks for your prayers!! Life is adventure, a journey of peaks and valleys!! I am thankful to be able to share my family's and Katie's journey with you! Keep praying!!

Friday, March 11, 2011

March 2011

On to a new year Katie is 13 months old! We celebrated her first birthday with a big party, lots of balloons, friends and family!! She has never ceased to amaze us! First we will start with what has happened since last update. She has now become a proficient bottom scooter and army crawling has become a thing of the past. This is good for independent mobility, but not so much for developing muscles and necessary skills to crawl and walk. She will need to continue to work on shoulder strength and hip and leg strength. She has mixed tone in her left extremities, we want normal tone by age two. This requires the brain continuing to rewire itself and repair or make new connections. It requires lots of stretching and movement of entire left arm, shoulder and hand and left leg, knee and toes. She is 17lbs and 28 1/2 inches. She was referred to a GI specialist to make sure nothing is abnormal with her slow weight gain. The neurologist was happy with her progress and continues to tell us to play with her two million times per day. Katie has been reevaluated by all her therapists. She is still delayed but overall doing great!
Katie is scooting quite fast all over the place. Katie has learned to blow kisses and can wave hi and bye and say it too! She can say "all done, hi, bye, dog, nana, dada, mama, down and mine." Dada and mama are there, but not always directed at appropriate person. Mine is her new word and she can say it with conviction. :) She repeats well, and Casey will swear she said Casey. She is likes to talk on the phone to daddy. Katie learned to pull to stand this week. Katie pulls to stand everywhere now- on Mommy's leg, couch, laundry basket, crib, fireplace, bathtub and shopping cart. She is a non stop little busy body. Katie is always on the move and has a lot to say! She is a loud chatter box, who can smile sweetly with the head tilt and softly talk to you or can yell and growl. She has the cutest, saddest boo boo lip.
Katie is wonderful and beautiful, but on her visit with the GI doctor this week we got a new view on her progress. Her GI specialist didn't seem concerned from the first moment she saw Katie. She continued to ask questions and was trying to figure out why she had the shunt. She talked with me and then she took a minute to review Katie's chart and look over her birth history. After reading about her stroke, the bleed, cysts and the extensive brain damage that resulted; the doctor looked at Katie and with a truly astonished look said, "Wow!" She couldn't believe how high functioning Katie is with the amount of brain damage she had at birth. It made me recheck my expectations and made me extremely grateful for where she is. Katie could be an entirely different child if not for the grace and healing hand of our Lord. Thank you God for my baby girl!! Thank you everybody for your prayers!! Thank you!! That one "WOW" has changed the way I look at my baby girl!! I am blessed!!! We are blessed!!! Thank you God!!

Monday, January 17, 2011

Almost One Year Old

Katie has made some huge strides this last month!! Katie started to army crawl December 20th! She has mastered that and she typically now uses her left arm and right foot to crawl. She does a nice little bottom scoot that she is getting better at, but we try not to encourage this mode of movement. Katie can say a few words, she has said: all done, hi, bye, and night night. Katie can move smoothly from sitting to crawl and just today has mastered going from crawling to sitting. She still has trouble rolling over sometimes, she reminds me of a turtle stuck on her back. So, please pray for that! We are trying to encourage her to crawl on all fours. We are ecstatically happy she is army crawling, it has made an enormously, huge difference in the strength in her left shoulder. But crawling on all fours develops coordination with her knees and elbows and will strengthen different muscles. We are working on pulling to stand. This is awkward because of her weakness, but she can do it with some help. Please keep praying!!! Katie has come a very, very long way, but she still has a ways to go. Please just keep praying!!!!! Katie has her follow up evaluation with the Regional Center this week, please pray she continues vision therapy!! Her vision is still delayed, but it is definitely improving! Katie's CCS evaluation will be next month. Next week she has her one year check up and an appointment with her neurosurgeon.

Katie had a great Christmas! She helped open many gifts. She had lots of fun with the paper and boxes! She received a lot of great gifts! Thank you!! Oh, and she had a great time meeting her great grandpa and lots of family in Oregon after Christmas!! Here is to a Happy New Year!

One last prayer request is for me- her mom! This next few weeks will be emotional as the anniversary of everything happening! The news, the NICU stay, her surgery, her recovery process, but I am focusing on her amazing, wonderful progress!!!! Just pray for me too! Thank you, thank you for all your prayers!!!