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!!

Pictures of Katie

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!!

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!!!

November to December 15 update

Katie is growing and developing nicely! She was 15 lbs 7 oz on Nov 15 and her head grew 1/2 cm. She is doing very well and her therapists remind me that with "over-achievers" such as Katie we need to focus on how far they've come not where we want them to be. She is not crawling and is not making big strides toward crawling, but she has made huge strides, leaps and bounds in so many other ways!! She is talking! She says 'all done', 'hi', and 'bye'. She can wave and clap. Now a clap seems so simple, but with her left sided weakness her therapists are very impressed. She can turn her left hand and it was very stiff, but now she is starting to move her left arm slightly to meet her flailing right hand and arm. Simple games that annoy most parents, such as the dropping game, is a blessed skill that we celebrate with Katie. She still has trouble with her left and purposefully dropping. This makes things such as eating with her left difficult!! She scoots on her bottom and is a pro at spinning in circles on her tummy. Just yesterday she was trying to figure out how to move forward to get something out of reach. SO thinking about crawling is a step towards crawling!! She struggles with many things physically, but it is so encouraging to see her flourishing cognitively. She is stubborn!!! But her therapist say as it is rough for the parents; stubborn and opinionated is great for the child! It shows a higher cognative level! Today she started playing peek-a-boo!!! so exciting! Katie is doing great!
Katie is still doing one hour of physical therapy and occupational therapy twice a week and one hour of vision/ infant stimulation therapy once a week. In the last month Katie experienced craniosacral therapy. This kind of therapy is based on light touch therapy to help the body regulate itself properly. It is pretty cool. Katie and I experienced it together at a seminar, so we got 3 sessions for no cost. Also last week Katie started getting massages, through a chiropractor. I asked the therapist to start focusing on her left shoulder as this is her primary area of weakness, and a critical point for crawling. She has had only two sessions, but I have noticed a difference in her shoulder. She is starting to use it more and it is more relaxed and therefore easier to use and strengthen!
Please pray that she will crawl soon! She is on a two week break from all therapies around Christmas, so we will work at home. Just please pray! We are willing to accept that she may skip crawling, but it has many benefits for cognitive development that we would rather not skip it. But again focusing on the wonderful amazing progress she has made and the beautiful, healthy, joyful girl she is!!! Katie is a blessing! This journey has been difficult, painful and exhausting, yet rewarding, healing and a blessing!! I struggle daily with expectations for her, and for myself!! I pray daily for God to work in me and give me the strength, patience and joy to live life for Him!! It has been the longest 10 1/2 months of my life, but an amazing adventure and it is just the beginning!! Thank you for your prayers!!!

October 2010 Update

Katie had her nine month well baby check-up, October 18th. She is 15lbs and 27 3/4 inches. She is 2% for weight and 67% for height. The one thing they want to follow up on is her head did not grow much in the one and a half months since her neurosurgeon appointment. The pediatrician also wants her to gain more weight, so I am trying to get her to eat more; but since she is growing similar to Johnny I am not worrying about it. She has a follow up appointment November 15th.
On October 18th Katie also visited the neurologist. Dr. Gurbani did diagnosis Katie with Left Hemiparesis and Hemiplegic Cerebral Palsy.
"Hemiparesis or Alternating hemiplegia of childhood (AHC) is a rare neurological disorder characterized by frequent, temporary episodes of paralysis on one side of the body (hemiplegia). Symptoms usually begin before the age of 18 months." In Katie's case just unequal movements. His scientific test was holding her under her arms and only one foot was kicking. Katie can be encouraged to use both feet, but usual response is only kicking right foot/leg.
"Cerebral Palsy is a neurological movement disorder characterized by the lack of muscle control and impairment in the coordination of movements. This disorder is usually a result of injury to the brain during early development in the uterus, at birth, or in the first two years of life. Cerebral Palsy is not progressive." The terms overlap and cerebral palsy is primarily unequal movements and weakness. Katie has left side weakness, but the great thing about her condition is she is NOT stiff. If she was rigid or stiff, this would be much more worrisome, but she is loose and capable of good movement, but doesn't always like to move her left.

So, officially she has cerebral palsy and this is scary, but with lots of work and therapy she can overcome may possibilities. Cerebral Palsy does not correlate with intelligence, her brain damage could affect this separately, yet she does not seem to be affected here!!! Praise the Lord!! All 3 of her therapist comment on her cognitive abilities and how bright and quick she is!!

Katie has started clapping!! Katie speech has improved just in the last week! She now has several regular sounds~ mama, dada, baba, and nana. Also I swear sometimes she says HI!!

Katie is improving everyday! But we are greedy and want more! Specifically I want her to start crawling! But I know that she will start in God's time not ours! Katie is in the Best Hands!!! Thank you for your continued prayers!!!

September Update

September has been a busy month. Katie resumed vision therapy and started CCS, California Children's Services, with occupational therapy and physical therapy on September 20th. The evaluation results present Katie as an age appropriate baby! Katie was approved for therapy for an hour twice a week, half an hour OT, half PT. Her therapist enjoy her, but she doesn't always enjoy working for them. Just pray she continues to learn and practice the new skills. Pray for her to extend up on both arms, while on her tummy, so she can start crawling soon! Crawling isn't a necessary milestone, but is important for cognitive development! Please pray for her left arm and left foot! Pray for complete healing and progress!

We went to see an optomologist through Southern California School of Optomology. The main Doctor works with the Blind Children's Learning Center. Her vision is progressing. We were concerned about a head tilt Katie started in the end of August, but it seems be a way to focus better with her nystagmus. We feared it may be pockets of undeveloped vision, but it does not seem to be the problem. She is roughly 2-3 months delayed in her vision, so significant at 8 months, but not in the big picture. She should continue to progress, so please keep praying!

I also had the guts to ask about her cognitive level. The opinions are very optimistic! They say Katie's social abilities are wonderful and that is a great sign, as well as, she seems to be a good thinker and problem solver. I.E. in therapy instead of using her left hand to pick up her pacifier, she will bend in half and try to just pick it up directly with her mouth. We are truly blessed with a beautiful, joyful daughter!

On September 19th Katie got her first tooth! Also that same week she start scooting on the floor. She is on her belly, and only pulls with one arm. It is like an army crawl in a circle, but she is starting to move! This is exciting since this is where she scored the lowest on her evaluation, locomotion, or basically moving (rolling, crawling, scooting, walking).

We went back September 16th and visited the NICU, where Katie spent the first 16 days of her life. There were a few nurses and therapists that remembered her. They took her picture and current info to post it in their lunch room. It was scary to go back, but neat to see everyone and take her home. A healing moment for Mommy!!
Thank you for all your prayers! Keep them coming!!

Pictures of therapies~ will update with info soon! In home vision therapy with sensory toys and light box, then at CCS with physical and occupational therapy.

August Update

Katie is doing great! At the end of July Katie started vision therapy. This went really well, but she has 3 sessions within a week because the therapist is now on vacation for 4 weeks. Hopefully therapy will start back up September 2nd. The vision therapist works with Katelyn's vision, as well as, an overall sensory stimulation program. The therapist uses light boxes with different inserts and colors, different textured items, different sounds and movements. Her vision improved after the three visits, but has regressed a little since therapy stopped. So, hopefully with consistent vision therapy it will cement in the improvements!!

Her Occupation therapist is very impressed with her sitting and is giving me exercises to get her to weight bear on her left arm/hand and use her left hand more.

Her neurosurgeon is very happy with her head shape and has no concerns for her. She will have another follow up in 6 months! Yeah, the Dr. appts are starting to spread out!

Today Katie had her evaluation with CCS, California Children's Services, a state run program. They provide occupation therapy and physical therapy. Katie has many encouraging signs, but also several warning signs. She has good movement in her pelvis and she can isolate each joint for different movements. She is advanced in her sitting ability. She is using her left side and not neglecting it. Katie has less sensitivity in her left extremities. She is clenching her left toes and this means she could possibly need a leg/ankle brace or shoe inserts later. She is using her left side less than her right. This weakness could cause her to skip crawling, which isn't bad overall, but we want to encourage crawling to facilitate more muscle development. (The funny chance of this is that last night I had a dream that Katie just stood up and started walking.) Katie vision is still delayed and she tracks better with noise than sight alone. But Katie is bright, happy, social and talkative. She finds favor in all that evaluate her! It is definitely a reality check seeing the other children receiving services- Katie could be a whole lot worse off!! I thank God for her progresses!! The therapist brought tears to my eyes praising how well she is doing and how clear it was that I was working with her! They still have another hour and a half left of evaluating to do, but as it stands they are thinking 45 min to an hour twice a week. This would be out of home therapy about 15 minutes away. So, pray as we figure out how we will fit therapy into our schedule! Pray for her vision and left side weakness! Pray for me and John! Thank the Lord for her great progress and for the wonderful blessing she is!
Jess

Improvements!

I went to my occupational therapist Tuesday and since my visit two weeks ago I have improved greatly. She was very impressed with my sitting up. She was very happy with my improvement in movement of my left side. I am tracking better to my left also! She said I am only a month or so behind in some areas, but overall I am hitting several appropriate milestones. My mom asked about my vision and she advised that we pray that my brain continues to heal which it has been doing a lot of lately!

On Thursday July 22nd I saw my neurologist and pediatrician. My neurologist Dr. Gurbani is very impressed with my process. The diagnosis of cerebral palsy is still on the table until my next visit. While cerebral palsy or CP is a scary diagnosis it is generally put as a physical disability that affects various areas of body movement. CP can vary from trouble with fine motor skills (writing, cutting, using utensils) or a learning disability to sever difficulty walking or talking. People with CP can be geniuses or be mentally challanged. So, I could be a smarty pants that can't be a lefty. By the age of 5 we should know the extend of disabilities (if any). :) My Dr. says just to work with my left side two millions times per day and hopefully my brain will rewire itself.
My pediatrician is very impressed with my progress. She said she wouldn't have noticed my left side weakness unless my mom had mentioned it. I am petite in size, but I get to start on solid food. I am 13 lbs. 5 ozs and in the 5% percentile for weight. 15% percentile for height at 25 1/2 inches.

I also am now approved for physical therapy and vision therapy through the Regional Center, the state funded program. I have a visit from a vision therapist through Blind Children's Learning Center on Friday July 30th.

It has been an amazing journey as I turned 6 months this week!

A note from my mom: This has been a long 6 months, but these last few weeks have been so encouraging. Katie is making great strides and is improving almost daily. She still fists her left hand, but some massaging has seemed to help. Little things that others may take for granted are a welcomed sign of accomplishment for Katie. We have to teach her how to hold and grasp things with her left hand. We have to show her how to bring objects to her mouth with her left hand and make her remember that she can use her left hand. We have to remind Katie of her left toes and get her to relax her left toes. But all at the same time remembering that she is improving every day! She is making lots of sounds and learned how to keep her self in a sitting position. Katie does bounce a lot and we will have to wait and see if she is seeking sensory stimulation or if she will outgrow it. It may stop when she can move or when her vision improves or she may always bounce, we have to wait and see! We have to thank God for each milestone hit and each new thing she learns. Katie is a wonderful adorable miracle and a beautiful gift from God! He has a plan and He will carry us through this tiring and challenging time! I thank God daily for Katie and our wonderful friends and family that enable us to care for her! Thank You!!

Pictures

Physical therapy

So far this month has been productive. On June 30th I qualified for physical therapy through the state funded Regional Center of Orange County. This is a good and bad thing. Good because I can get the physical therapy I need and deserve, but bad because it means that I am at least 33% delayed in gross motor skills. The evaluator observed that some of my delays may be as a result of my vision delay. So more good news I also should get vision therapy through Blind Children's Learning Center. I say 'should' because until it is on paper I don't get my hopes up. Many services are done in home and we are praying that I qualify for an in home program.
I had another occupational therapy appointment this week and it went well. I am doing really well in some areas and my mom got exercises for me to do in other areas. I am very strong, but need to refine and develop other muscles. I bounce a lot to get more sensory stimulation. I am sitting well with support. I am rolling over more often! I am doing well overall! My therapists are happy at the progress I have made!

Please pray that my therapy starts soon and is adaquate and often enough. Pray for my body and mind to continue to heal. Pray for my vision to improve and to be able to see farther away. Pray for my parents to have peace and rest. Thank God for my amazing family and the wonderful progress I have made! Thank you for all your prayers!

More updates at the end of the month!

On May 30th I was dedicated at my church! My parents are devoted to raise me to know the Lord and His Love and how to live my life for Him. I am blessed to have such a great and Godly family!
I have an OT appointment in July, and in late July I see my Nuerologist and have my 6 Month check up. I am doing well! I have a small cold and cough, but am otherwise healthy! I am strong, but I still need to work on equal movement on my right and left side. I am making progress but there are a few warning signs that if not worked on could cause delays to crawling. My parents are working hard to get me therapy, not just monitoring visits. California Children's Services or CCS has services available but I was denied the first time. We are in the process of reappling with more doctors notes to back up my need for services. We are praying for occupational therapy, physical therapy and vision therapy! Please pray too! But at this time we would be happy with any therapy! My vision is making progress but still delayed. Just keep praying and thank you for all your prayers!
I also want to thank my friend who is a physical therapist for offering to work with Katie once a week until she qualifies for services. Thank you! Even the smallest answered prayer is a wonderful blessing! But pray big!!!