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!!!
Wednesday, December 15, 2010
Monday, November 8, 2010
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!!!
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!!!
Thursday, October 7, 2010
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!!
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!!
Friday, September 24, 2010
Thursday, August 26, 2010
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
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
Wednesday, July 21, 2010
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!!
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!!
Sunday, July 11, 2010
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!
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!
Wednesday, June 23, 2010
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!!!
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!!!
Thursday, May 13, 2010
My Baby Dedication
I wanted to invite all who have prayed for me to my baby dedication on May 30th at Whittier Area Community Church at 11:15am.
Eye Doctor Report
On Wednesday I went to see the eye doctor. Dr. Mehta said my eyes are good and healthy. The part of my brain that processes vision seems to be healthy and unaffected by the bleed. The nystagmus is a sign that there is damage along the pathway from eyes to the brain. My vision is also behind, it is more at a newborn level than a three month old level, but the Dr said there is nothing that he can do since nothing is wrong. So, that is great news, but just more waiting. We have to just wait and pray that my vision gets better every day! Please pray for my vision! I do not go back to the Eye Dr. for 6 months unless something gets worse.
My Neurosurgeon said I look good as well! He said my head looks very well shaped! The shunt is working well and is draining a little too much fluid, but he said my brain will compensate and make up the difference. I go back in 3 months to see him for a head measurement.
I am smiling and laughing more often! I am getting stronger each day! My focus is on progress in the right direction, not a typical 3 month old development. I am doing great! Keep praying for my vision, no infections and that the shunt continues to work well!
Saturday, May 8, 2010
Laughing!
Today I giggled and giggled again! My mommy tickled my belly and chin and I laughed!
That is the fun news and here is an update on my first two Dr. visits of the month. My appointment with the nuerologist went well! He said everything looks good! I am doing great! He just said we need to continue to pray that the shunt continues to work well, and that no infections develop.
The Occupational therapist said I am making great progress and only slightly behind in my neck strenght. She gave my mom some excerises to do with me. She was very happy that I am bearing weight on my feet and my hands. I still need prayer for my eyes. The Drs. say I have nystagmus, meaning my eyes dance and do involuntary movements. Some cases of this are outgrown and others may be life long and affect my vision and depth perception. So, please pray for my vision! My appointment with the optomologist is this week. I will let you know what he says! Thank you for your prayers!
That is the fun news and here is an update on my first two Dr. visits of the month. My appointment with the nuerologist went well! He said everything looks good! I am doing great! He just said we need to continue to pray that the shunt continues to work well, and that no infections develop.
The Occupational therapist said I am making great progress and only slightly behind in my neck strenght. She gave my mom some excerises to do with me. She was very happy that I am bearing weight on my feet and my hands. I still need prayer for my eyes. The Drs. say I have nystagmus, meaning my eyes dance and do involuntary movements. Some cases of this are outgrown and others may be life long and affect my vision and depth perception. So, please pray for my vision! My appointment with the optomologist is this week. I will let you know what he says! Thank you for your prayers!
Thursday, May 6, 2010
Katelyn's Facebook Page
Since everyone seems to have a Facebook page these days, we wanted to let you all know that Katelyn now has a Facebook profile! You can add her as a friend by clicking this link to Facebook or (in case that doesn't work) by searching for Katelyn Jeanblanc.
We will still post infrequently to this blog for larger issues but their will be more small updates on her progress there. For example, Katelyn laughed for the first time today when her mother tickled her feet! Also, more pictures and perhaps even video will be posted there.
We will still post infrequently to this blog for larger issues but their will be more small updates on her progress there. For example, Katelyn laughed for the first time today when her mother tickled her feet! Also, more pictures and perhaps even video will be posted there.
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