D is going to start hydrotherapy at Hollyridge in their saltwater therapy pool. I'm not really sure all that it entails, but Diane said that it will be great for both sensory and motor. I'm excited to find out more about it and see how D will respond. Luckily the water is kept pretty warm because D didn't do so hot when we tried swim lessons due to the temp of the water.
So, keep your fingers crossed on monday!
Friday, March 31, 2006
D is going to start hydrotherapy at Hollyridge in their saltwater therapy pool. I'm not really sure all that it entails, but Diane said that it will be great for both sensory and motor. I'm excited to find out more about it and see how D will respond. Luckily the water is kept pretty warm because D didn't do so hot when we tried swim lessons due to the temp of the water.
Tuesday, March 28, 2006
Today was Tuesday...and therefore, Hollyridge! D had a great time; she got to walk almost the entire time. Getting her to sit down for sensory play with playdough was..interesting! And then getting her to sit during snack was discouraging. What kid doesn't want mac n' cheese? She ate a bunch of crackers and drank her juice but just pushed away her noodles. I swear, she is a picky child!
Anyways, the class leaders had read the report from D's UW visit and they were all very excited! I think everyone is so impressed with how far D has come. She may not walk, she may not crawl, but she is an impressive force to reckon with. Everyone loves how she just goes and goes and goes.
Today was one of her friend's last day. She is moving up to the toddler class. It is sad to see so many of her friends go...but someday D will get in there with them and then watch out!
I scheduled D's hearing test for mid-April. The Hollyridge folks were sure it was just fluid on the ear drum or that she was distracted...just like the audiologist said. I'm glad everyone is on the same page.
Posted by Shannon at 5:48 PM
Monday, March 27, 2006
This past week I've been saving bread so we could go feed some birds. So, with bread in hand, the family headed out in our new car in search of birds. We had to go to TWO parks before we finally found some birds to feed at the third stop...and boy did we find a good quantity of birds, both seagulls and pigeons.
One of Jeff's favorite activities is feeding birds. I have fond memories of us on a vaction eating clam chowder and sourdough bread at a beach and him encouraging the seagulls to dive bomb me. However, we were all on our best behavior yesterday and the birds flocked to be fed. I thought D might be scared, but she actually was really into it. I think we will be back next weekend for some more bird action.
And a quick sleep update....Two nights slept all through the night, one night woke up at 2am, and last night slept through the night. So, in short 2-1-1.
Posted by Shannon at 10:38 AM
Sunday, March 26, 2006
D's new Radio Flyer Wagon Walker finally arrived the other day. She was a bit tentative at first but has quickly learned exactly how to make it go. She is so excited about being able to walk without one of us holding her up. She also likes to put one hand on the wooden slats and the other on the bar while walking...I guess she feels more supported that way.
Anyways, she is just thrilled with her new found independence...especially running into the dining table and chairs!
Mr. Larry, D's physical therapist, recommended that we get her a walking toy. We picked the Radio Flyer Wagon Walker because the wheels have resistance to them, so it is less likely to run away and leave D hanging (literally) from the bars.
Posted by Shannon at 1:11 PM
Saturday, March 25, 2006
Thursday night D slept in her own bed until about 6am and last night she slept in her bed until 5am! Wahooo! That is a bit of success..hopefully it continues.
D is a total snuggler and lovey girl. She would wake up to eat but also to cuddle with mama. I've noticed recently that whenever there is a pillow on the floor, she rolls over to it and rests her head on it and snuggles in. So, flame me if you will, I put a pillow in her bed. Both days I woke up and checked on her and she was snuggled into the pillow.
So, perhaps we have come upon a solution; at least I hope so!
Posted by Shannon at 6:14 AM
Thursday, March 23, 2006
We are missing out on the sleep train in a major way in our household. Since about November, D has been waking up sometime between midnight and 2:30 am. I've gotten into a REALLY bad habit of getting out of bed, feeding her a bottle, and falling asleep with her in the recliner. I have made attempts to put her back in her crib, but she wakes up and cries. I think she has made it back into her own bed once or twice.
Like I said...a REALLY bad habit.
I've tried not getting up to feed her...but she screams.
My husband doesn't sleep well with her in our bed...besides, she has her own bed, she should be sleeping in it.
AHHH!! Please, if you have ANY advice, SHARE!
She looks so cute sleeping...I just wish she would do it more!!
Posted by Shannon at 8:55 AM
Wednesday, March 22, 2006
Why is getting a toddler to eat a healthy diet SO HARD?!?! It seems like D likes yogurt one week and then never again? The only constant things I can get her to eat are graham crackers, fruit snacks, chicken nuggets, and cheetos (as shown in the photos). Of course milk, too.
Am I giving her too much milk? Am I giving in too early and not forcing her to eat healthier? Should I be giving her vitamins?
I need some healthy snack ideas....anything, please!
At the same time, D is still small, so she needs snacks with lots of calories.
I'm going to have a 20-year old that will only eat cheetos.
Posted by Shannon at 10:24 AM
Tuesday, March 21, 2006
Sorry, but between late nights (DH's job has been keeping him), trying to recover during the day, and the child that cannot walk but wants to walk everywhere...things have been hectic.
Today we went to Hollyridge and D has shown just how addicted she can be to a slide. She refused snack, although she did eat a saltine and a cup of fruit punch (100% fruit!), but the second those were done, she wanted to SLIDE RIGHT NOW!!
More stuff and more interesting stuff soon.
Posted by Shannon at 1:52 PM
Sunday, March 19, 2006
As mentioned in my previous post, D has an addiction to birds. When we are outside (or even sitting and eating breakfast) if she sees a bird anywhere, she immediately points or signs bird crazily. We get all excited with her and jump around saying "bird!, bird!".
So, yesterday, in our attempt to fuel her passion towards birds, we took a field trip to Wal*Mart and bought a bevy of bird feeders, 5 to be exact. Since we already have one bird feeder, we added to our reportoire 2 regular bird feeders and 3 hummingbird feeders, and a 20 lb. bag of seed. I made up a batch of hummingbird nectar (I used 2 cups of sugar to 8 cups water..anyone know if this is correct?) and Jeff hung them.
So far we've had a visit from one hummingbird and a couple of interested finches. Hopefully we'll continue to get these visits because Darsie LOVES them!
If anyone can recommend a good book on wild birds, I would appreciate it. I'd like to be able to identify them for her rather than just use "bird!!!".
Just in case it is not apparent in that last photo...Jeff is climbing up on a ladder to hang the bird feeders....more photos soon, hopefully with "birds!!!"
Posted by Shannon at 11:56 AM
Saturday, March 18, 2006
Just a quick baby brag post…..
Darsie has learned two new signs! Bird and Sleep!
Her newest and most favorite activity is bird hunting. Papa started it with her and now she is addicted. We go outside (or look out the window if it is cold or rainy) and search high and low for birds. Then, when we finally see one, we show it to her, point at it, and sign for bird.
Last night when it was dark and it was time for bed, she wanted to go bird hunting! Crazy kids…
Posted by Shannon at 8:02 AM
Friday, March 17, 2006
No Diane today…so I’m struggling with something to write. I think it might be a good day for a “ramble” post. So, here goes….
I think the hardest thing for me to deal with with D’s cerebral palsy is that she isn’t “normal”. When I was pregnant, I always dreamt that she would be an over-achiever, brilliant, ahead developmentally, and all those things that I think all parents dream of for their kids.
For us, circumstances changed. D was born early. D had a brain bleed. D has cerebral palsy. But you know what, my dreams have come true…just in a different way.
She is an over-achiever. I have never seen a baby/toddler work harder at doing anything. You can see the determination in her eyes and her joy when she accomplishes something is wonderful and thrilling.
She is brilliant. She catches on to things so quickly. Just today she picked up the sign for bird. And the other day she learned the sign for sleep. She copies everything I do and can figure things out rapidly.
She may not be ahead developmentally, but she is an absolute joy and a perfect baby. She is my daily companion and one of my best friends, all while being my daughter. I couldn’t and wouldn’t have picked a better person to have as my child.
Posted by Shannon at 10:19 AM
Thursday, March 16, 2006
We are borrowing a "recycled" orthotic from Mr. Larry to see how D does with it. She has an issue where her toe crosses over her big toe and her foot turns in just a bit, so Larry decided to start treating it sooner rather than lately, especially because D LOVES to walk (with assistance of course).
I think it looks like a cool little boot and she doesn't mind at all. In fact, she thinks it is neat and loves the sound it makes on the floor.
Posted by Shannon at 2:49 PM
Wednesday, March 15, 2006
It's that time of year again to sign up to walk and to start supporting walkers for the March of Dimes WalkAmerica!
These photos are from last year when we walked with D.
FOR THIS YEAR:
The Wells family, acting as Team Darsie again, would like to raise $400 by April 22. If you would like to donate to March of Dimes and help the fight against prematurity, I urge you to give $1, $100, or whatever you can donate.
Posted by Shannon at 9:19 AM
Tuesday, March 14, 2006
Papa demonstrates the correct sign for "cheeto"
Darsie demonstrates the correct sign for "cheeto"
Darsie eats a cheeto!
I just have to say that I am SO impressed with baby signing. I really think that it is one of the best things that we started with D as she now has a method of communicating basic concepts with us. It has definitely made my life MUCH easier.
Posted by Shannon at 6:40 PM
Diane made a new hand splint for D to help her keep her thumb in the right spot. Currently, D tends to hold it inwards rather than relaxed. She also tends to not use it that much. So, with a little neoprene and some neoprene glue, Diane made D two new hand splints. I never would have thought that with the right knowledge, it could be so easy.
In the past I had purchased D a Joe Cool glove, but it was too big (I ordered the wrong size) and she needs just a bit more support to keep her thumb out. One of the girls in D's Hollyridge class has a Joe Cool splint and it works great for her. It is amazing how things that work for one person don't work for another.
Posted by Shannon at 4:23 PM
I saw this news clip in my RSS Feed and thought some of you might be interested.
Wrestling through adversity
This is about a thirteen year old boy has cerebral palsy which affects the function of his legs. He is wrestling with the "normal" kids in middle school. He also plays wheelchair basketball, goes sit-skiing with his family, and even played football.
Posted by Shannon at 11:31 AM
Monday, March 13, 2006
Trial to study games in cerebral palsy patient rehab
I found this article today that talks about a study about to begin that replaces the traditional person-to-person therapy with video game-to-patient therapy. It is being touted as the ultimate form of brain training (a glove over the patient hands directing movement, etc.) while also being cost effective and also more fun and enganging.
My thoughts are that I would never want to take that person-to-person element out of Ds therapy. We both get a lot out of the interactions and the knowledge that her therapists are able to give us. However, I can see how this form of treatment would be beneficial. I think the best alternative would be to give both types of treatment.
Posted by Shannon at 7:52 AM
Sunday, March 12, 2006
I love reading about what people with cerebral palsy and other ailments can achieve. It seems like so often that I hear of people who were once given a grim prognosis but have gone on to achieve miraculous feats. So, in an effort to share these stories that I come across, I introduce you to Inspiration - True Life Stories I.
Fighting cerebral palsy against odds
A 35-year old woman with cerebral palsy creates commercial web sites, has had several exhibitions of her art, and is a teacher...all while using a head pointer and being nearly immobile.
He still plays like the rest:' Cerebral palsy doesn't stop Canterbury teen
A 14-year old boy with cerebral palsy who plays soccer, baseball, and basketball. He had surgery when he was 10 so his feet would have normal function. Due to the cerbral palsy, his head is always turned towards the side and he catches balls with his fists and arms since he has trouble opening his hands.
Making History, One Day at a Time
Now a doctor, this woman's parents were once told she wouldn't live, then she would never talk, and finally that she wouldn't learn like other children. She is now the director at the cerebral palsy center at the St. Louis Children's Hospital and a faculty member at Washington University School of Medicine.
Posted by Shannon at 11:14 AM
Saturday, March 11, 2006
As mentioned previously, D goes to physical therapy with Mr. Larry on Thursdays and Diane from the Washington State Elks Therapy Program comes to our house on Fridays to give D occupational therapy.
This week there aren't too many updates. D is working on walking and being upright on her feet with Mr. Larry. At the start of her session she was very upset and crying, but towards the end she got comfortable again and worked pretty well with him.
With Diane, D again did pretty well. She loves to go from activity to activity very rapidly and Diane is good at keeping up. Diane is making D a custom splint for her right hand because we've had a hard time finding just the right one for Darsie. We've tried a couple different ones and Diane thinks we should just go for the custom one this time around. So, we'll be doing a fitting on Monday morning with her for that.
Just this morning D was getting up on her knees a bit, so therapy is working! We've seen so much progress since she first started and continue to see her progress weekly.
Posted by Shannon at 3:05 PM
Friday, March 10, 2006
While calcium supplements don't prevent preeclampsia, there is new evidence that supports that calcium supplements do reduce pregnancy complications.
Calcium Supplements Reduce Pregnancy Complications, an article posted on Medpage Today by Judith Groch, MedPage Today Staff Writer, showed that calcium was effective in reducing the following complications:
* severe eclampsia
* severe gestational hypertension
* 25% reduction in severe preeclamptic complications (so while it doesn't reduce the number of cases of preeclampsia, it seems as if it can reduce the effects of preeclampsia)
* maternal morbidity & mortality
* neonatal morbidity
* mothers aged 20 or less had a lower risk of pre-term labor
In conclusion, Dr. Villar said that although calcium supplementation did not lead to a statistically significant decrease in the overall rate of preeclampsia, "treatment significantly reduced the risk of its more serious complications, which included maternal and neonatal morbidity and death and preterm delivery, the latter among young women."
So, if you are pregnant, take your calcium!
Posted by Shannon at 11:55 AM
Anyone who can knit, crochet or sew is invited to make hats, booties and blankets for premature and critically ill infants. For information, visit the Preemie Project's Web site at www.thepreemieproject.com or e-mail email@example.com.
View the whole article
When D was in the NICU she received blankets from various organizations and I just thought it was such a nice gesture. It was truly appreciated in our household. So, if you sew, crochet, or knit and have a bit of extra time, this is one of those organizations that tries to make a difference.
In the photo above you can see the blanket that D was given in the NICU. It was used to cover her incubator to block out the bright lights. She was incredibly sensitive to the lights and to the noises, so not only was the blanket beautiful, it was also incredibly helpful to her.
Posted by Shannon at 9:26 AM
“Preemies are exceptional babies,” says one mother. “Why should they have to settle for less than exceptional clothes?” ANNA’S says they don’t have to, and proves it by showcasing a wide range of patent pending designs geared toward preemie comfort. Each piece is made of combed Peruvian cotton and is expertly stitched so seams aren’t a bother. Scratchy tags won’t be found inside any ANNA’S garment, but outside and out of the way. No longer do preemies have to contend with an endless jumble of wires and tubes snaking over their bodies. Instead, small enclosures located on the sides of garments provide housing for leads and keep them out of tiny hands. Panel openings on the fronts of garments allow baby to lie in uninterrupted rest while access to his body is a breeze. Both caregiver and baby are relieved at how little movement of the baby is required in everyday care.
Darsie didn't wear much clothing when she was in the NICU, but when she finally was able to, we had to scramble for clothing. Luckily for us, a family that had been in the NICU when D first arrived gave us a HUGE bag of preemie clothes.
When D came home, she was weighing close to 5 lbs., but she was still very tiny. She wore her preemie gear for about a month and then graduated to newborn clothes. She didn't get into 0-3 forever. In fact, she is still able to wear some of her 0-3 onesies.
Posted by Shannon at 9:20 AM
Thursday, March 09, 2006
On a whim today, I thought I would give D a chance at using a sippy cup. We've tried this in the past to not too much success. She was more interested in watching the liquid drip out than drinking.
So, we gave a Nuby cup a shot. And, tada! Success!! I don't think we're near giving up her bottle, but at least we are moving towards the right direction.
Posted by Shannon at 4:24 PM
I talked to Mr. Larry (physical therapist extraordinaire) this morning about shoes for D. He wants her barefoot in the house to get as much sensory input as possible. For when we are out and about, he prefers socks or soft soled shoes, such as robeez. For her at this moment, shoes are only to protect the foot when she is actually on them and the only time she needs protection is when we are not at home.
Posted by Shannon at 3:25 PM
Second Annual Walk-A-Thon
Saturday, May 13, 2006
The Preeclampsia Foundation will hold the second annual nationwide walk-a-thon, scheduled for Saturday, May 13, 2006, the day before Mother’s Day. The timing of the event is intentional – preeclampsia affects approximately 200,000 pregnant women each year, some severely enough to take the babies’ or even the mothers’ lives. The goal of the event is to raise awareness and money to support patient education efforts. You can fax your registration form or contact our national coordinator for local contact information. Walk-up registrations will be accepted at each of the sites
The Walk-A-Thon sites are:
* Phoenix, AZ
* Santa Barbara, CA (May 20)
* Atlanta, GA
* Davenport, IA
* Denver, CO
* Indianapolis, IN
* Minneapolis, MN
* Rome, NY
* Marion, OH
* Portland, OR
* Harrisburg, PA (May 6)
* Pottsgrove, PA (May 6)
* Beaver Dam, WI
* Richmond, VA
Posted by Shannon at 3:16 PM
This is Darsie, my beautiful daughter, aged 17 months. She is one of the many faces of cerebral palsy (as you all know by now). But she is just one face in a sea of thousands of other who deal with cerebral palsy.
Please, if you have a blog or a web site about a person with cerebral palsy, send me the link. I want to create a unifying point of information and resources for people with questions. I can't begin to tell you how many people are led to my site with questions about cerebral palsy - whether it be how to weigh a person with cerebral palsy or even the question we dreadingly ask...does my baby have cerebral palsy?
This is my call for help from everybody and anybody who has something to give.
Posted by Shannon at 12:34 PM
Wednesday, March 08, 2006
We are extremely lucky that D doesn't have any eating issues. She loves food! Her only problem is with weight gain, which I think most preemies probably have this issue. Well, and of course constipation, but I split about whether or not this is an eating issue.
Anyways, D loves to eat, but we have a hard time getting fruits and vegetables into her. I don't know if she doesn't like the texture, if she doesn't like the taste, or what the issue is exactly. I give her a fruit at breakfast and lunch and a vegetable at lunch and dinner, but I'm still thinking she isn't getting enough.
I think the solution at the moment is to make muffins with carrots and apples in them. I have a couple of recipes I'm going to test drive, but when I find one that is good, I'll be sure to share.
Posted by Shannon at 2:05 PM
Tuesday, March 07, 2006
I'm going to talk to her therapist about it on Thursday because I'm not sure whether to buy her soft soled shoes or hard soled shoes. She outgrew her Robeez and has been going around in socks for the last few weeks. I know that barefoot is best when learning to walk, but I was also told that if she require orthotics she will need hard soled shoes. Anybody have any advice?
After I initially wrote this post, I went to our family website and looked at some of our photos there. It is so sad (but good, too) to see her wearing all these little outfits that no longer fit her. She is growing up, feet and all!
Posted by Shannon at 9:57 PM
If you know of a blog or write a blog about dealing with cerebral palsy in some form (whether it is you that has cerebral palsy, your child, etc.), let me know. I'd like to start a list of all of these blogs as I think they are invaluable resources.
Please, I don't want to add any blogs of lawyers who sue doctors, etc.. I want this to be about support, personal stories, personal experiences and not how much money some guy can get you.
Posted by Shannon at 7:10 PM
I found a great article that lists what a diagnostic team is looking for when making the diagnosis of cerebral palsy. The main points are:
How is the Diagnosis of Cerebral Palsy Made? When an infant or child has brain damage, a variety of symptoms can lead doctors and parents to suspect that something is wrong. In the first few months of life, an infant with brain damage may demonstrate some or all of the following symptoms:
* Lethargy, or lack of alertness
* Irritability or fussiness
* Abnormal, high-pitched cry
* Trembling of the arms and legs
* Poor feeding abilities secondary to problems sucking and swallowing
* Low muscle tone
* Abnormal posture, such as the child favoring one side of their body
* Seizures, staring spells, eye fluttering, body twitching
* Abnormal reflexes.
During the first six months of life, other signs of brain injury may also appear in an infants muscle tone and posture. These signs include:
* Muscle tone may change gradually from low tone to high tone; a baby may go from floppy to very stiff.
* The child may hold his or her hand in tight fists.
* There may be asymmetries of movement, that is, one side of the body may move more easily and freely than the other side.
* The infant may feed poorly, with their tongue pushing food out of their mouth forcefully.
Once a baby with brain damage reaches six months of age, it usually becomes quite apparent that he or she is picking up movement skills slower than normal. Infants with cerebral palsy are more often slow to reach certain developmental milestones, such as rolling over, sitting up, crawling, walking and talking. Parents are more likely to notice these developmental delays and abnormal behaviors, especially if this is not their first child. Sometimes when they express their concerns to their physicians, their child is immediately diagnosed as having cerebral palsy. More often, however, medical professionals hesitate to use the term "cerebral palsy"at first. Instead, they may use broader terms such as:
* Developmental delay, which means that a child is slower than normal to develop movement skills such as rolling over and sitting up
* Neuromotor dysfunction, or delay in the maturation of the nervous system
* Motor disability, indicating a long term movement problem
* Central nervous system dysfunction, which is a general term to indicate the brain's improper functioning
* Static encephalopathy, meaning abnormal brain function that is not getting worse.
Posted by Shannon at 6:27 PM
Thinking that something may be wrong with your child is one of the scariest experiences. To me, it is close to actually getting a diagnosis.
We knew that D was delayed in her motor skills and we also knew that she had the IVH, but realizing that something was wrong and getting the diagnosis was a battle for us. We all want to think that we are raising the next MENSA member, or the next star athlete, or a concert cello player, so when the thoughts start coming that something just may not be right, it shakes our whole world. For us we knew that she had the IVH. The doctors in the NICU couldn't tell us at that point how it would affect her later in life and what she would be able to achieve, but we still had high hopes for her. So, when we went for her 8 month developmental assessment (adjusted age, not actual) we were pretty shocked when the diagnosis of cerebral palsy came in. Just hearing those words come out of a doctor's mouth seems like a death sentance. We definately had to do our research.
I think what has helped D the most is having a parent at home with her full time and also her therapy. Me being home with her and her therapy go hand in hand. There was no way that I could work full time and take her to all of her appointments. But, I think that also it helps her having as much one on one attention as humanly possible.
We still have a lot of work ahead of us but we also have a lot of hope. She tests normal cognitively and her motor skills are coming along. One of these days she is going to surprise us and take off running and there will be no stopping her.
Posted by Shannon at 6:08 PM
Monday, March 06, 2006
To start out Project Flashback, I thought I would give a little background about how D came so early.
I had my 27 week appointment and my blood pressure was a little high. My doctor told me to keep an eye on it and to come back in if it got too high. That Friday night, my husband and I went to dinner and a Mariner's game with a couple of friends. By about ten, I was completely worn out so DH and I walked back to the car and went home. We went straight to bed but unfortunately I wasn't sleeping very well that night. I was very uncomfortable and sore. My right shoulder was aching very badly and I just felt horrible. I knew that something was wrong but I waited until the morning so my husband could take my blood pressure.
Morning came and I hadn't gotten much sleep. Jeff took my blood pressure but it read so high I just couldn't believe it. I called into my doctor's office to let them know and they told us to go to a fire station to get a blood pressure reading. The fire station verified the prior reading and off we went to the hospital.
Once at the hospital, things started happening very quickly. I was told that I had preeclampsia and that I was spilling proteins in my urine. We needed to lower my blood pressure to keep D inside as long as possible. I was given a steroid shot almost immediately to ripen D's lung just in case she was going to be born early.
Unfortunately, the medicines weren't lowering my blood pressure. We were holding pretty steady otherwise, but were told that D could be delivered at any time if things started going South.
We made it through the night with my blood pressure being continually taken and nurses poking and prodding. The next morning we were told that my liver panels weren't looking so great and that D also was starting to show signs of "stress". It was decided that afternoon that she was going to be born that day.
About 9pm I was prepared for surgery and D was born. She weighed in at 1lb. 12oz. and was immediately put on vent. Of course we all thought she was absolutely gorgeous even though we were all extremely worried.
Posted by Shannon at 9:17 PM
National Institutes of Health Seeks Participants for Study Investigating Brain Reorganization in Cerebral Palsy
Children and adults with hemiplegic or diplegic types of cerebral palsy between 6 to 30 years of age are invited to participate in a study investigating brain reorganization in cerebral palsy at the National Institutes of Health (NIH), Bethesda, MD (Protocol 04-N-0098). The study involves 3 outpatient visits to NIH. Psychological testing, brain MRI, evaluation of vision and hearing, and a comprehensive evaluation of rehabilitation needs will be provided at no cost to participants. Contact NIH toll free at 1-800-411-1222; TTY: 1-866-411-1010; e-mail: firstname.lastname@example.org
NIH is part of the U.S. Department of Health and Human Services. This study is carried out in compliance with testing and safety standards of U.S. Department of Health and Human Services.
This sounds like a really interesting study. I am interested in hearing the results of it since D has such extensive therapy.
Posted by Shannon at 6:07 PM
I don't know much about hydrotherapy, but since I had a google hit querying cerebral palsy and water, I thought I would find some information on it.
At UCP there was the following article: http://www.ucp.org/ucp_generaldoc.cfm/1/7044/7045/10697-11782/4189
My favorite paragraph:
After recently visiting both therapeutic swim programs; Special Needs Aquatic Program (SNAP) and San Francisco Children’s Swim, it’s apparent why both of these offerings have full waiting lists. Here, children think only of the fun they are having in the pool. At the same time, they receive so much more: mobility, physical therapy, self confidence and social connections. For some, as you’ll discover in the program descriptions below, this type of workout is a key differentiator in the overall health of our special youngsters.
We tried general swim lessons with D when she was about 12 months old but without much success. I think our main issue was that the pool was a standard pool and simply was not warm enough. She would enjoy it for about five minutes before she would stiffen and just cry. So, we pulled her after the second class. However, at her therapy center, Hollyridge, they have a hydrotherapy pool. She hasn't been prescribed the services, but I think it would be a fun and therapeutic activity for her and most kids with cerebral palsy.
Posted by Shannon at 5:53 PM
I've recently read an interesting article (http://www.comeunity.com/premature/research/helen-constipation2.html) that discusses constipation and older preemies. It seems that some studies have shown that after preemies leave the NICU there are often constipation issues, especially in extremely low birth weight preemie.
I have to agree with the article that it is something that should get better with age. D's constipation is improving although we still deal with it from time to time.
I have seen some articles as well (http://www.positivehealth.com/permit/Articles/Bodywork/essex69.htm) where there are discussion about massage therapy and constipation.
So, I would have to recommend that if your child suffers severe constipation and nothing works, it may help to visit a massage therapist experienced in dealing with children with disabilities.
Posted by Shannon at 1:24 PM
I think it is interesting that so many people are searching for information regarding cerebral palsy and massage. I am a huge proponent of natural therapy and remedies for treating illnesses and diseases, so it makes sense to me that alternative therapies could help with cerebral palsy, especially such methods as massage therapy, reiki, and cranial sacral.
D has received cranial sacral, but probably not at the amount that would prove truly beneficial. Besides, she is a wiggly, rolly 17 month old which is not conducive with cranial sacral.
So, as far as massage therapy has gone, D has not received any, although she did go see a chiropractor once.
I found the following article: http://www.massagetoday.com/archives/2002/08/21.html by Ruth Werner, LMT, NCTMB
I'm going to post a section of the article that I thought was most interesting and hopefully nobody at Massage Today will take offense.
The damage for a person who has CP does not begin in the muscle and connective tissues. Although this is where we feel the tightening of the connective tissue wrappings around muscles, the contractures themselves are simply a symptom-a complication of a problem deep in the brain. Therefore, if all we try to do is lengthen the muscles and stretch the fascia, we will run smack into a brick wall: either no progress will happed at all, or symptoms may even be temporarily exacerbated. Most people with CP get best results if bodywork focuses on indirectly affecting muscle tone through craniosacral work, gentle rocking, slow range of motion exercises, and manipulation of the arms and legs that engages the client in ways he or she doesn't automatically resist-this often means going with the direction of muscle shortening in order to disengage the reflex. Ultimately, the therapist will have to experiment with lots of different approaches, often accompanied by extremely supportive bolstering, in order to find what techniques allow their clients to relax and enjoy their massage.
The benefits of massage to CP patients are undeniable. Parents write of their satisfaction when their child is able to sleep through the night, when postural distortions unbind, when breathing eases, when faces light up with joy because the massage therapist has arrived for a session. Imagine a child who is the object of vast numbers of painful, intrusive, unpleasant, dehumanizing medical procedures (regardless of the supportive intentions behind them). This child is handled rather than touched. Then his massage therapist arrives and arranges him carefully among pillows and bolsters on the table. She cradles his occiput and straightens his neck so he can breathe more easily. She rocks his arms and legs until their tension eases. She plays with his fingers until he realizes he can move them in lots of directions. Nothing she does hurts. What a gift, what a privilege to be invited into such a relationship!
If physical therapy is used to stretch and strengthen skeletal muscles, massage will also be a safe choice. The only caution is that people with very severe CP may not be able to communicate their wants or concerns clearly. If a massage therapist works with a client who cannot speak, other modes of communication, including nonverbal signals, become especially important. It is the responsibility of the massage therapist to make sure that his or her work is welcome and freely accepted at all times.
Our culture harbors a fear of people who look, or sound, or act differently from ourselves. Seeing or being with someone with CP can raise all kinds of fears or judgments that we never realized were there. Maybe this person can't speak, or drools, or walks funny, or doesn't walk at all. Speaking for myself, I will share that it's especially hard for me to deal with disabilities when they occur in children. And yet, here is a population that so needs the work we do! As long as basic common-sense precautions are respected (don't overwork numb areas, be sensitive to nonverbal communications, if anything you do makes symptoms worse then stop and try something else) massage can be a central coping mechanism for a child or adult with CP.
Posted by Shannon at 1:12 PM
I think it is interesting to see where people find this blog through. Since there is obviously interest on the following topics, I'm going to do my best to find some information and write about each of them. If there is a link....then it will direct you to something from me.
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Posted by Shannon at 1:05 PM
I wanted to take the time to show you the two most important people in my life. My wonderful and gorgeous daughter who makes me smile, laugh, and shake my head in amazement every day. And of course, my wonderful husband who holds my hand when I need him too, rubs my back, tells me he loves me, and is my best friend.
When you have a family member with cerebral palsy, or any sort of disability I would imagine, it is so important to have that person that is your backup 100 percent. I can tell my husband anything and have his support and he is always there when I need a helping hand with D.
I have a beautiful and perfect family.
Posted by Shannon at 12:40 PM
Sunday, March 05, 2006
I think that D will be dealing with constipation on and off for a long time, if not forever. She went about two weeks with great results. No straining, no fissures, no crying. In fact, it got to the point where almost every diaper I changed was pooped in. But we are back to about every 2-3 days with a bit of straining. I'm going to start pushing more fiber and see if it helps.
I wish I had an answer on this topic because I know there are lots of kids out there with cerebral palsy that deal with it.
Posted by Shannon at 3:44 PM
D was diagnosed with hemiplegia cerebral palsy, which basically means that the arm and the leg on one side of the body is affected. Because D's intraventricular hemorrhage was on the left side of her brain, the right side of her body is effected (much like stroke victims). Her therapists have been watching her carefully the past few weeks and have come to the conclusion that in her case, only her arm is affected, not the leg. Wahooo!
Posted by Shannon at 3:41 PM
We've had a busy couple of weeks with D's yearly BIG developmental assessment at the University of Washington Center of Human Development. Previously she has met with just a physical therapist to assess her motor skills but as she turned one, this upped the ante significantly. This time around, D met with an audiologist, a pediatrician, and a psychologist.
Audiologist - D and I were taken into a sound proof room and various tones were played and then accompanied by a dancing bear in a box if she turned towards the noise. She did pretty well but we will be retesting her hearing in about three months. She is in the process of getting a tooth so they are pretty sure she has some congestion in her ear drum.
Pediatrician - At D's last assessment we were given the diagnosis of hemipalegic cerebral palsy and hypotonia. We were also informed that D was scrawny and we needed to up her caloric intake. So, of course, we were completely dreading this visit and what it could behold. We were only given good news by the pediatrician. D no longer had the significant stiffness in her hips that she had had at her previous visit and she had gained good weight and growth (although still small) and had fat deposits on the back of her arms and on her thighs.
Psychologist - The psychologist was to test D cognitively and on her motor skills. She scored normal as far as her cognitive skills go and is behind a few months on her motor skills, which we already knew.
So, all in all, a good assessment.
Posted by Shannon at 10:28 AM