Wednesday, December 15, 2010

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!!!

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!!!

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!!

Friday, September 24, 2010











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.

video

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

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!!

Sunday, July 11, 2010

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!

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!!!

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!

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.

Tuesday, April 27, 2010

Keep Praying

I have a busy month ahead of me. I see all 5 of my Doctors within the next month. First the Pediatric Nuerologist, then Occupational Therapist, Nuerosurgeon, Optomologist and finally my pediatrician. I am getting stronger every day and seem to be on track in my gross motor skills. I can hold my head well and can lift it up 90 degrees when on my tummy. I can roll from my back to my side and back again. I have rolled from my tummy to my back once. My parents biggest concern are my eyes. They do weird movements and I still have trouble tracking. I have been told this is normal after a brain injury, but am looking forward to what the eye doctor has to say. I will keep you informed on what the doctors have to say! Thank you for your prayers!

Wednesday, March 10, 2010

At 6 Weeks

Time can fly by quickly. Katelyn is now 6 weeks old. Yesterday, Katie was seen by the pediatrician. She is now 8lbs 14oz and physically is doing well. However, today she was seen by the neurologist, who noted that she already is showing some signs of developmental delays. The neurologist pointed out that the way that Katie was holding her head was not age appropriate. He reminded Katie's parents that she has suffered significant brain damage and that they now have to wait to see how much the brain is able to heal. The neurologist suggested that Katelyn needs frequent stimulation - stretching her arms and legs, speaking to her, and holding her.

Coming up at the end of March, Katelyn will be seen by the neurosurgeon and an occupational therapist. At the end of April, she will have a follow-up appointment with the neurologist. Katelyn will also be seen by a hematologist who will do a test on her when she is 4 months to see if she has any blood clotting problems.

As you can tell, Katelyn and her parents could really use your ongoing prayers. Thank you for your continued support!

Tuesday, February 23, 2010

CAT Scan is OK!

If you missed the last post, Jess brought Katelyn to the ER last night as she noticed that the fontanels of Katelyn's skull felt harder last night. This can be a symptom of shunt failure. While they arrived at 7:00, they weren't seen until 11:00. The doctor ordered a CAT scan. Instead of sedating Katelyn, like they had for previous scans, Jess was able to hold Katelyn still enough to perform the scan.

The good news is that the scan did not show any evidence of fluid build-up in the brain and that the shunt was functioning properly. Katelyn will have a follow-up appointment at the Brea clinic for this afternoon. While the reason for the hardening of the fontanels is unclear, it was comforting to know that the shunt continues to work properly.

Monday, February 22, 2010

Trip to the ER

I wanted to let everyone know that Jess has brought Katelyn to the ER this evening. She noticed that Katelyn's fontanelles (parts of her skull) had become a little harder, which can be a sign that the shunt is not working. As a precaution, she has taken Katelyn to the ER to be evaluated by a doctor. An update will be provided as soon as we find out. Pray that nothing is wrong and that Katelyn is fine.

Thursday, February 11, 2010

Update From Home

It's been a few days since my last post and I'm sure many of you are wondering how Katelyn is doing at home. Well, a couple days ago, Katelyn had weighed a little less than she did when she was discharged and the doctor was a little concerned about this. But Katelyn has regained the weight and she is 7lbs 8oz again. She continues to eat well. Her head has steadily decreased in size to 37cm - which is down from the high of 40.5cm just before the surgery. Pray that this trend continues until her head is proper size.

Katelyn will be working with an occupational therapist who will do stretching exercises and other exercises to help her function normally. However, the earliest available appointment was a month away. The doctor wanted her to begin therapy within 2 weeks, if possible. Pray that an opening will become available.

On Monday, Katelyn will be seen by a doctor of hematology to evaluate her and look at her blood test results. We hope that all the blood work will turn out normal. Thanks for your continued prayers...

Sunday, February 7, 2010

Super Sunday Pictures

Here are some pictures from today and a few from the last few days. The yellow on her head is just iodine. Katelyn is finally home!After the surgery:



Katie with her oldest brother Casey. This was the first time Casey has seen Katelyn as he was not old enough to visit her at the hospital.
Katelyn with the boys.
Katie with Mommy.
The Jeanblanc Family together at last!

Katelyn is Coming Home!

Great News! Katelyn has been cleared to come home. Her parents are on their way to take her home now. The neurosurgeon felt that she was making good progress and that she would be fine at home. While her wound had bled a small amount, the doctor felt that everything was healing as expected. Her head size continues to decrease and she continues to eat well.

While all of you are probably watching the Super Bowl, the Jeanblancs are finally going to be home together! Praise God!

Saturday, February 6, 2010

Progress After Surgery

Katelyn continues to recover well from the surgery. She started eating again last night. Her head size has decreased half a centimeter to 39.5 cm, which is a good sign. Katelyn underwent the surgery a few hours after another baby had the same surgery and that baby is still on a ventilator. Katie was off the ventilator within half an hour after surgery! (Pray for that other baby!)

Katie's parents hope that she can return home soon but the nurses will not give a time, although there is some indication that it will be on Monday or Tuesday.

With all of this going on, there is still room for celebration - Katelyn's older brother, Johnny, turns 2 tomorrow. Johnny hopes that Mommy and Daddy can bring home his sister for his birthday so that they will not be away so often.

Friday, February 5, 2010

Katelyn's Surgery

This morning, Katelyn underwent shunt surgery to relieve the pressure in her brain. She went in a few minutes after 10:00, and the doctor came out to talk with the family about 11:40. He said that the surgery went smoothly, that the shunt fit properly, and that there were no immediate complications. Everything went as planned! We have already been able to see Katelyn, as she is back in the NICU. She has incisions at the back of her head and in her upper abdomen. Her temperature was slightly elevated but now seems to be coming down. She has not woken up fully yet and we hope that she will be able to eat soon.

This morning was particularly stressful for Jess and John as the doctors discussed an alternate surgery that could be performed just before Katelyn was going to go in for surgery. Jess and John had learned about this procedure last night after speaking with the neurosurgeon that would be doing the operation. This doctor shared that he was recommending this surgery. Jess and John did a little research after learning this and were preparing themselves emotionally for this new surgery. The surgeons, however, had not fully collaborated their decision. After they had, they stayed with the VP shunt process because the ETV procedure was not as successful for infants under six months and that VP shunt surgery was the better option. After this consultation, Jess and John feel like they made the right decision - and the doctors both recommended they stay with the shunt.

Katelyn will be in the NICU until the doctors decide she is able to go home, probably within the next 2-4 days. She will then have scheduled follow-up appointments and possibly home visits by a nurse. Pray for her recovery - that she will not have an infection develop, that she won't have a seizure, and that the shunt can function properly.

Thanks for the prayers! Today was a big day and we're glad that it seemed to go well!

Thursday, February 4, 2010

Possible Surgery Change

A last minute update on the plans for tomorrow. Jess and John were informed by the neurosurgeon that there was an alternative surgery that he said Katelyn was a good candidate for. The surgery is called endoscopic third ventriculostomy (ETV). Basically, this surgery involves drilling a hole between the ventricles on the left and right side of the brain so that they are connected and can better regulate the pressure. The benefit is that if the surgery is successful then Katelyn would not be shunt dependent and this could allow the pressure in her brain to come down. The downside is that the surgery does not have a high rate of success - decreased pressure in the brain - and that she may still need a shunt later on. The good news is that ETV seems to be slightly less risky than VP shunt surgery. The real concern is whether this surgery will be enough to allow Katelyn's brain to recover. That might not be clear for another 3-6 months.

The neurosurgeon suggested this surgery just this evening. As Jess and John had been emotionally preparing for the shunt surgery, this change threw them off. They spent the last 2 hours searching the web for more information on this surgery and found a lot of contradictory statements about the surgery. Yet, while some of the first information about the surgery had been negative, they were feeling a little more peace about it after continuing to do research, as they found that the risks were fairly equivalent to shunt surgery and that while this is not always effective, they always can have a shunt placed later.

Jess and John will meet with the neurosurgeon at 9:30 to discuss the risks and benefits of this surgery and the surgery will likely occur following this consultation (probably around 10 or 11). Pray for them as they decide whether to give consent for this surgery. Pray for Katelyn's health through the surgery. May God watch over our precious daughter.

Surgery Tomorrow

Katelyn's shunt surgery is scheduled for tomorrow morning at 9:30. The shunt will help treat her hydrocephalus. The downside of shunts are that the person generally needs to have the shunt for the rest of their life - they are considered shunt dependent. The upside is that the shunt will help control Katelyn's brain pressure so that it can start returning to a more healthy shape.

Pray for 4 things:
1) That the surgery proceeds without complications.
2) That the shunt functions properly.
3) That no infections will develop.
4) That Katelyn can start eating again within 12 hours after the surgery.

Shunt surgery is fairly routine. However, these complications occur at a high rate. Pray also that Katelyn can come home by Monday. This diagram will help you get a better feel for what a shunt is and does.

Wednesday, February 3, 2010

Meeting with Pediatric Neurologist

Today, Katelyn's mom and dad met with the pediatric neurologist who will be following Katelyn after her shunt surgery on Friday (the time will either be 7:30 or 9:00 AM). This doctor is already planning to evaluate Katelyn in six months for her follow-up. This doctor stated that the stroke was likely an aneurysm that ruptured. If that was the case, there was nothing that could have been done to prevent this from occurring.

Jess and John were able to see pictures of Katelyn's brain from the ultrasound, MRI, and CT scans. He showed them that the ventricles were considerably larger than normal. The ventricles are essentially pockets of fluid, with no brain tissue in that area. The ventricles expanded as the result of the bleeding in that area, pushing the brain tissue in those regions out.

The long-term question is, first of all, will Katelyn's brain return to a normal shape. In order to develop normally, her brain will need to partly grow back into the area where the ventricles currently are. While Katelyn's apparently normal functioning is a good sign, it is not surprising to the doctor, who pointed out that the areas of her brain that control her gross motor movements was not affected as greatly as other areas. That means that we cannot conclude that Katelyn will develop normally just because she is functionally well now.

The doctor suggested two things to pray for as Katelyn's shunt surgery approaches. The first is that the shunt functions properly. This means that the shunt does not get clogged, the shunt remains in place, and that the shunt keeps the CSF at a good pressure level. The second aspect of the surgery to pray for is that there will not be an infection. These problems could mean that the shunt would need to be replaced.

Katelyn is now 7lbs, 6oz - she is growing and continues to eat well.

Tuesday, February 2, 2010

Clarification on Diagnosis

I wanted to clarify an earlier post where I said that Katelyn would likely be diagnosed with cerebral palsy. The doctors have not yet identified a cause for her stroke. Apparently, it is not completely unusual to find out that there is no "cause" of the stroke or that a number of things went wrong in synchrony. Hopefully, if there is any chance that another stroke could occur, doctors will be able to know how to prevent further it. However, generally the infant does not have another stroke.

The doctor suggested that Katelyn might be diagnosed with cerebral palsy. That was one guess at a possible outcome. Cerebral palsy simply means that Katelyn would have difficulties with movement: she may have difficulty with fine motor movements, she may have difficulty with walking, or she may be wheelchair bound. All of these would classify her with cerebral palsy. However, it remains possible that Katelyn could also simply develop a learning disability or that she may develop fairly normally. At this point, it is almost impossible to know. On the one side is her good current level of functioning. On the other side is the severe nature of the stroke. Again, it is impossible to know how this will affect her. We continue to pray for her healing and for God's will in all of this.

Monday, February 1, 2010

No Spinal Tap Today

Today Katelyn was tentatively scheduled to undergo another spinal tap (aka lumbar puncture or LP). However, the lead neurosurgeon decided not to perform the spinal tap. Considering that Katelyn's proteins levels were already low at the last spinal tap, this doctor felt confident that her protein levels would have come down enough. The protein levels largely reflect the amount of blood that is mixed in the CSF fluid. If the protein levels are high, the shunt could get clogged and would then need to be replaced. Several websites have noted that repeated lumbar taps are not a very effective way to treat hydrocephalus and that, if the hydrocephalus does not resolve after the first draining, then a shunt is the better option.

Katelyn's shunt surgery is still tentatively scheduled for Friday. Apparently, the surgical team that would perform the shunt placement is also performing another surgery on Friday, so they hope to perform the two surgeries on the same day. A shunt is basically a drainage tube that has a valve that shuts off when the proper fluid pressure is achieved. The tube goes into the ventricles - the empty space in the middle of the brain (see picture) which is filled with CSF - and drains down into the abdomen. All of the tube is under the skin so the shunt will not be visible. More information on the procedure will be forthcoming.

Once again, we're thankful that Katelyn continues to function well: no vomiting, no seizures, and that she still has been eating well.

P.S. The brain you see here belongs to Katelyn's uncle Curt. The views are from the side, from the front, and from above. Red arrows point to the ventricles in each picture.

Sunday, January 31, 2010

Another Update on John's Mom and Sister

The last post was an update on John's mom and sister but apparently I understated their injuries some. The accident was fairly severe - John's mom Lorna blacked out for the accident and had to be removed by paramedics. She had a concussion and so felt fairly sick today, as well as being fairly bruised up. John's sister, Jen, was driving and got a deep gash in her foot that went down to the bone. Apparently that gash was from the brake or gas pedal. Jen's new (4 month old) car is now likely totaled. They weren't sure what the condition of the other driver was.

The recovery for Lorna and Jen will likely be about 4-6 weeks, which means that they won't be able to be as helpful to Jess and John while Katelyn remains in the hospital. Lorna and Jen have been very helpful, watching their son Johnny, cleaning the house, and making meals. Pray for a speedy recovery.

Lastly, Katelyn's spinal tap is scheduled for tomorrow. Pray that it will occur and that Katelyn's protein levels will have lowered enough that the surgeons can perform the shunt surgery within the week.

Update on John's Mom and Sister

A quick update on John's mom and sister, who were in an accident last night as they were going to visit Katelyn at the hospital. John's mom broke her collarbone. John's sister had some scratches and apparently needed stitches. Of course, we're glad the accident was not worse but obviously they are both pretty bruised up and in a fair amount of pain. Pray for them as they recover.

Saturday, January 30, 2010

Waiting and Praying

All signs seem to indicate that Katelyn is continuing to recover from her stroke. She lost some weight after birth (which is normal for a newborn) but has already regained it. She continues to eat well. Blood tests have come back normal, which is good but continues to leave the cause of Katelyn's condition to be a mystery. Currently, the doctors say that she will likely be diagnosed with cerebral palsy, although that is an umbrella term that refers to a disorder of motor abilities.

On a sadder note, I just received notice that Katelyn's grandmother and aunt (John's mother and sister) were in a car accident this evening and are being taken to the hospital. I'm completely unsure how bad this accident was but I hope you remember them in prayer, as well.

Thursday, January 28, 2010

News on Katelyn

To start off, I wanted to correct my previous blog in that it was the left side, not the right side, that Katelyn was having weakness and difficulty seeing. The occupational therapist has instructed the nurses to stay on Katelyn's left so that she can start getting better at looking at her surroundings on both sides. The nurses are also trying to lie Katelyn on her left, as this apparently helps strengthen these muscles and increases blood flow. The good news for today was that another occupational therapist tested Katelyn today and found that she had better reaction to pain (a pinch) on her left side today than she did yesterday. The occupational therapist said that she was very surprised at how much improvement there was from yesterday to today!

The other update is that Katelyn's next spinal tap was pushed back and is scheduled for Monday. If Katelyn's protein levels have come down some more, then her surgery to insert the shunt will likely be on Friday, February 5th. This was somewhat disappointing for her parents, who were hoping the surgery would be conducted early next week. Most likely, Katelyn will be able to return home after she recovers from this surgery, which is about 2-4 days post-surgery.

Going to the hospital several times a day is exhausting: Hospital parking is sparse. Entering the NICU requires that you wash your hands for 2 minutes. You must put on a plastic half-robe to hold Katie. A few doctors, nurses, and others working with Katelyn might share some information about Katelyn that you will have to remember. Then you have to be proactive in gathering information. Finally, you are just excited to see Katie and have to deal with the sadness of leaving her there.

Wednesday, January 27, 2010

Day 6

So we are continuing to learn more about Katelyn's condition each day. The neurosurgeon reviewed results of the testing on the CSF fluid that was extracted during the spinal tap. He informed Katelyn's parents that her red blood cells were at a normal, low level. However, her protein levels were somewhat elevated. He is planning to conduct another spinal tap Friday or Saturday to see if the protein levels continue to be elevated. If the protein levels move down then they plan to place the shunt sometime between Monday and Wednesday next week.

Katelyn was also visited by an occupational therapist. The occupational therapist noticed that Katelyn seemed to have weakness on her right side and poor vision in her right visual field. The occupational therapist also said that it was good that Katelyn was able to breast feed because babies with tongues like Katelyn's (with the line at the bottom of the tongue to the bottom of the mouth being longer than average) often have trouble with breast feeding.

Tuesday, January 26, 2010

More Pictures and MRA Results

Here are a few more pictures of our precious little Katelyn. Also, I'm happy to report that the results of the MRA show that the blood is leaving the brain and that there was no evidence of aneurysm or structural problems with the blood vessels. More good news. It seems that the waiting has not been doing any damage and that Katelyn is getting better! The next step is likely going to be putting in a shunt to help drain the cerebrospinal fluid but that will need to wait until the doctors are confident that most of the debris is clear. A shunt that can be cleared of debris is available; however, inserting that type of shunt requires more recovery time.
Pray that Katelyn's brain can continue to recover and that no further damage, such as another stroke, occurs. We can also simply pray for God's will through all of this.

Results of Spinal Tap Drainage

Earlier this afternoon, the doctors decided to go ahead with the lumbar spinal tap. This spinal tap involves draining the cerebrospinal fluid (CSF) through the spinal cord in order to decrease the pressure on the brain and to test the fluid. The doctors hoped to extract 5-10cc of CSF. One of the concerns was whether there was "debris" in the CSF. If there was debris, then a shunt could not be placed because it would become clogged. The good news is that the doctors were able to extract the amount of fluid they were hoping to extract (just under 10cc) which means there will be less of the excess pressure on the brain. The other good news is that the fluid came out clear, with no blood. This means that the doctors can place a shunt if they decide this is the best option. Further tests will be run on the fluid.

More good news! The washer and dryer now work. John was able to clear the drain so that the washer could work well. He also said he gave the dryer a kick and now it's working again. John felt that this was a sign that the power of prayer works.

MRA Test Scheduled

An MRA is scheduled to be conducted this morning. An MRA is similar to an MRI but it looks specifically at the blood vessels. This will be helpful in gathering better detail about Katelyn's stroke. This may also reveal what changes might have happened in the last few days.

Katelyn continues to eat well and her mother remarked that "it's hard to see Katelyn as being sick when she seems so healthy on the outside." May this be a positive indicator of her outcome.

Monday, January 25, 2010

Blood Tests and More

Another day of waiting. While the lumbar spinal tap was originally planned for today, the doctors delayed this because they are apparently unsure whether it will be the most effective treatment to reduce the pressure in Katelyn's brain. The other option is placing a shunt in her skull that would drain the fluid in her brain. The hardest part of this is the fact that the doctors have yet to provide any actual medical treatment for Katelyn - when she is now almost 4 days old. Hopefully, this waiting means that the best medical treatment can be determined but it is certainly hard to wait!

The laboratory has the results of Katelyn's blood tests but are waiting on the results of testing on her parents - Jess and John. The blood tests cover a variety of issues and potential areas of concern. The doctor interpreting the tests stated that infants' blood test results can sometimes be inaccurate and so looking at the parents' blood results can help clarify the results.

Also, a couple of ministry opportunities are available. If anyone knows how to repair a dryer, Jess and John's dryer has quit working and they found out that it would cost at least $100 to make the visit plus parts and labor. What a terrible time for a dryer to stop working! Of course, Jess and John could also use help with doing their laundry in the meanwhile. If you are interested in helping, please do not contact them directly. Instead, please leave a comment here if you are able to help. Be assured there are meal lists being distributed and that meals have already been planned for the next week and a half.

Keep praying for endurance for Jess and John - the trips to the hospital every 3 hours are emotionally and physically taxing. Pray for Katelyn's older brothers: that Johnny does not feel forgotten during this time and for Casey who is unable to visit the NICU and see his sister because he is under 14. Pray that, if medical intervention should be done, that it will be done quickly and that the best course of action can be chosen.

Sunday, January 24, 2010

Ophthamologist Findings

A quick update. The ophthalmologist saw Katelyn tonight. Katelyn's eyes appear healthy and to be functioning appropriately. Also, there were no signs of infection.

Serenity Prayer

Our church's sermon was on God's healing during life's difficult times. They gave us the Serenity Prayer and I think it is relevant to what has been going on with Katelyn.

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
Living one day at a time; Enjoying one moment at a time; accepting hardships as the pathway to peace; Taking as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen.

More Tests and Treatments

There are a few new updates that we would like to share. Overall, the good news is that Katelyn continues to appear healthy and is eating well. Jess visits the NICU every three hours to feed her. Of course, this is a tiring process and has meant a lot of driving back and forth.

The opthamologist will visit Katelyn tonight to check her vision and her retinas. Tomorrow a lumbar spinal tap has been scheduled. The purpose of this tap is to drain some of the cerebrospinal fluid (CSF) that has been creating pressure in her brain - treating her hydrocephalus. Hopefully, this will decrease some of the cranial pressure, otherwise the CSF will have to be drained through the skull using a shunt. The fluid will also be tested to determine if there are any infections present.

Jess and John will be meeting with the neurosurgeon tomorrow to discuss treatment and review her condition. Katelyn has a number of doctors who are working with her: Dr. Choi (pediatric neurosurgeon), Dr. Stea (neurosurgeon), Dr. Gerbani (pediatric neurologist), Dr. Menta (ophthalmologist), Dr. Lu (neonatalologist), and Dr. Nguyen (neonatalologist).

The prognosis is still unclear; however, considering the degree of bleeding in her brain, it is very likely that Katelyn will have some degree of brain damage. The one thing that is certain is that Katelyn will need to be the hospital for a fairly long time. Of course, we can pray for a miraculous healing. We can also pray for proper medical care and for future developments in medical treatment.

Saturday, January 23, 2010

CT Scan

video
*Please scroll down to read previous posts for full information*
Today brought a few encouraging signs for Jess and John. Katelyn was able to breast feed three times. Jess has received a medical-grade breast pump so that she can have milk ready for the baby. The NICU has also given Jess a small doll that she can place nearby while she uses the pump so that Katelyn can have Jess' scent while she drinks the pumped milk.

Medically, there have also been some promising signs. A CT scan was conducted today (1/23) that found that Katelyn did not have any calcium deposits. Apparently this is associated with hemorrhaging and hydrocephalus and can cause infection. The absence of the calcium deposits also helped rule out a couple types of causes of the stroke. Jess and John have informed me that the doctors have 5 potential causes of the stroke that they are looking to rule out. These include viral infections, blood infections, genetic causes, and a few others (sorry I forget now). Blood work was being done to help check out these possible factors.

Jess was discharged from the hospital around 4:30PM today. She and John plan to have dinner with his brother's family, who will watch their son Johnny tonight when they return to the hospital (no one under 14 is allowed in the hospital). Johnny was very happy to see his mother but seemed to be confused about where his sister was. Being a couple weeks away from his second birthday, it would be a wonderful birthday gift if Katelyn could return home healthy by then.

Please pray for Katelyn, Jess and John, older brothers Johnny and Casey, and all of the family during this difficult time. Pray that the doctors make wise decisions and that all the staff are vigilant to her needs during this critical time. Of course, thank God for the technology that helped discover this problem and that will continue to be useful for her care. Thank you all for the prayers you have already prayed. They are a blessing and an encouragement!

MRI Results


*Please scroll down to read the previous two posts for full details* The MRI results indicated that Katelyn had had a stroke about 2-3 weeks prior to delivery while she was in the womb. The cause remains unknown at this point but the damage is fairly significant. However, the doctor consulted and decided to wait on surgery. As Katelyn seemed to be doing fairly well, he did not want to try risk a procedure. Surgical options are to remove the blood and/or to place a shunt that would help relieve some of the pressure in the brain caused by the blood and increased fluid.

Katelyn will be monitored closely over the coming week to see if her head increases in size. Since increased head size would indicate further bleeding, surgery would need to be conducted immediately if her head shows any signs of growth. Also, nurses in the NICU will be monitoring Katie closely for seizures, breathing problems, and other problems that might arise.

Jess spent an additional night at the hospital (along with John) and they managed to get a few hours of rest. However, being separated from their newborn has been difficult.

The Discovery


The next morning, Katelyn underwent an ultrasound of her head so that they could determine the reason for her large head. This had been conducted without much note. While Jess and John were in the room, the doctor found something that surprised even her. When she returned to give the parents the news, she asked that they sit down, prepping them for the bad news. She shared that she found that Katelyn had a large mass of blood in the ventricles of her brain along with increased fluid in her brain. The technical terms were that she had interventricular hemorrhaging with hydrocephalus. This is extremely rare for full-term babies and is usually associated with traumatic deliveries. The news was bad: her damage was rated as being moderate to severe.

Jess and John immediately began to notify the family of the tragic news - that the baby we had seen early that morning had a very serious condition that could result in serious brain damage. We were all in shock and it certainly took us a minute to fully comprehend what was being said. Jess and John's parents, as well as a few other family members, immediately went to visit them in the hospital. After staying up late the previous night, many of us were already fatigued and the news almost seemed to be too much to really comprehend.

The parents were informed that Katelyn would have an MRI done and that she would likely have surgery that evening, after the neurosurgeon completed the surgery he was conducting at that time. Katelyn had already been transferred to the NICU and was under close watch. She hadn't ate yet (which is normal for the first 24 hours) but this was a good thing if Katie was going to go in for surgery. Katelyn had been choking some and a tube was placed through her nose into her stomach so that fluids could drain. Otherwise, Katie had appeared to still be fairly healthy.

The Birth


While I'm writing this in full awareness of what has happened since her birth, I felt it was important to include some details on how Katelyn was born. Katelyn was due January 27th. Her parents were both very excited when they found out they would be having their first daughter. Her dad, John, had spent countless hours painting, decorating, and preparing her room, while her mom simply glowed whenever she talked about her baby girl's arrival.

Katelyn's progress had been fairly normal throughout gestation. The week prior to her birth, the doctor noticed that she was a little small and said that they would induce the following week if Katelyn had not grown. However, the next week the doctor had found that Katelyn had grown enough that inducing the pregnancy wouldn't be necessary. It turned out, however, that Katelyn decided she wanted out so about 2:00 on January 21st, Jess' water broke and they headed to the hospital.

While her last delivery had flown by in a quick 5 hours, Katelyn took her time. Jess' mom, mother-in-law, sister-in-law (Natalie), and her dad were all in the delivery room with her while she was giving birth. Finally, at 1:08 AM on Friday, January 22nd Katelyn Marie Jeanblanc was born. She weighed 7lbs even and was just over 20 inches long. Her birth was unremarkable and she was behaving like a typical newborn. All of her family was invited in to see her, hold her, and take pictures with her. While noting that her head was certainly large, all signs seemed to indicate that her birth had been a success without incident.