Yikes! Pressure Sores from AFO Braces

I know it's not just me. It really is always something when you have kids, isn't it?!

This evening, for example, as I was getting the girls ready for their evening bath, and as I sat on the floor with Taylor, helping her take off her little braces, I noticed it - a pressure sore on the bony part of the inside of her ankle. And seeing that sore, well, I got very sad. Yikes! A pressure sore.

Taylor has never had one in the 2-1/2 years that she has been wearing her AFO braces. What I know about pressure sores from braces is that once you have one, that particular area of skin becomes weakened and especially prone to getting them again even after the sores have completely healed. And, if there's one thing that a mom of a child with cerebral palsy gets bragging rights about - it's that your kid has never had pressure sores from braces. Oh, well, so much for bragging rights on that...Taylor got her first pressure sore from her AFOs today.

When I saw it, I asked Taylor if the spot was hurting her...Taylor told me that it "wasn't an owie" and it didn't seem to hurt her. (That made me feel a little bit better). After Taylor's bath, I treated the sore with Neosporin, covered it with a band-aid, gave her little ankle a kiss and Taylor an extra big hug and told her that her ankle would be "all better" real soon.

Until the pressure sore goes away, I will NOT be putting Taylor's braces on at all so that the sore on her ankle can fully heal. I also will be contacting the orthotist who crafted Taylor's braces first thing tomorrow when their office opens to let the orthotist know that we need to get her braces checked again for proper fitting and make any adjustments we might need to make as soon as possible!

Perhaps Taylor's just going through a growth spurt and her one foot/ankle is no longer fitting that one brace the way that it was first designed; well, whatever the reason, it's got to be corrected and right away. It absolutely broke my heart tonight to see that Taylor had developed a pressure sore on her ankle from her AFOs, and I just hope that her orthotist can fix whatever needs to be fixed on Taylor's brace so that she will be able to wear her braces again without further issue.

When It's Personal, It's Significant!

As President Obama pushes for passage of his first major domestic policy change, I've once again pulled out my activist hat and have spent considerable time in recent days in correspondence to my California State Senators and California Congressional Representatives. Some have received emails from me, some have received phone calls from me, some I've left voice messages for, while still some I've had the good fortune to actually speak directly to their staff members to voice my concerns (granted, these were only after waiting on the phone for as long as 30 minutes due to the sheer volume of calls the State Senators and Congressional Representatives are receiving on the healthcare debate, but it was well worth my time to wait it out in order to speak live to someone). It's one of the many perks of being a stay-at-home mom - you can become more involved in grassroots efforts and activism in issues and causes that are personally significant to you and you can dedicate a portion of your time (in your "spare" time) to making your voice heard.

The Affordable Health Choices Act of 2009 - which in my estimation based on what I've researched and read amounts to little more than nationalized medicine that will result in inferior patient care from doctors around the country as they are innundated with new patient lists, waitlists for existing patients and as a result, are forced to ration health care.

In the words of one doctor, "This is war," says Dr. George Watson, a Kansas physician and president-elect of the American Association of Physicians and Surgeons. "This is a bureaucratic boondoggle to grab control of health care. Everything that has been proposed in the 1,018 page bill will contribute to the ruination of medicine." Another telling statement which caught my eye was that from the Mayo Clinic, the non-profit organization and internationally renowned medical group, in which they stated, "Although there are some positive provisions in the current bill - including insurance for all and payment reform demonstration projects - the proposed legislation misses the opportunity to help create higher quality, more affordable healthcare for patients. In fact, it will do the exact opposite." (July 16 statement from Mayo Clinic web site).

When It's Personal Folks, It's Significant...

This issue is personally very, very significant to me and my family. As many of you know, family, friends or otherwise, who follow this blog fairly regularly, one of our twins has a mild disability (cerebral palsy) that has impacted her ability to walk and to coordinate some of her overall motor movements. For the past 3-1/2 years, our family has provided Taylor with the best specialists and doctors that our private insurance plan could offer to her in an effort to give Taylor every opportunity to live her life to the fullest potential and with the level of dignity and care that she deserves. Often our commitment to maintaining our private insurance plan has come with hard choices and personal as well as family sacrifices. Could my husband and I use the $300.00 - $400.00 per month that we pay out of pocket to our health insurance plan for something else? Certainly, but we choose not to. We choose not to tradeoff the quality of our healthcare for our children, particularly Taylor, and at times, it's not been easy but it's always been worth it. When Taylor has suffered a seizure as a result of her cerebral palsy, we've been able to schedule the necessary tests - EEGs and MRIs - without delay or a moment's hesitation. When Taylor has needed a consult with her pediatric neurologist or pediatric orthopaedist surgeon, or team of physical therapists, we have always been able to access them in a timely manner, sometimes appointments were made within the same day, within 24-hours, or at worst within a week or two.

The government takeover of the practice of medicine is going to ultimately threaten all of this! The government takeover of medicine is going to destroy the private health insurance which our family, and our daughter Taylor, has relied upon in our hours of need. I fear the rationing of the healthcare services, the long lines, and the lost access to the specialists and physicians which Taylor has so desperately needed and will continue to need for years to come. What happens when Taylor needs to be fitted for a new pair of leg braces in order to walk and she is unable to be seen or even scheduled for an appointment with her orthopaedist for six or more months? What happens when Taylor has another seizure and needs to have her dosage for anti-seizure medication adjusted and she is unable to be seen or even scheduled for an appointment with her neurologist for six or more months? Our little girl's life is literally at stake, her future well-being, her ability to thrive and to live a full life to her greatest potential is at stake.

While I know that there are millions of families who desire healthcare and who have their own personal stories to tell in this healthcare debate, I also know that for those families who face special medical circumstances raising special needs children and who day in day out do the best they can to care and manage the extenuating health issues of their loved ones, this debate is largely an open/shut case for us. The families I see each week in Taylor's physical therapy sessions who are wrestling and managing real quality of life issues don't want to lose their private insurance healthcare that gives them instant and open access to the doctors and specialists they need. The mother of the little boy, whose name is Cody, who sits in a wheelchair and relies upon feeding tubes whom we see each week at one of Taylor's therapy appointments would tell you the same - what do we do when our little boy needs a new feeding tube placed in his stomach in order to maintain his proper nutrition? Do we wait six or more months? Do we just sit idly by and watch the medical needs of our child become further compromised? And, only after waiting six or more months for the consult to be seen by the gastroenterologist, do we then have to wait another six or more months in order to schedule the surgery to replace the feeding tube?

It's against this backdrop and within this context that I have done what I can in recent weeks to protest the passage of the Affordable Health Choices Act of 2009. I protest its passage for my family and my children but also for the millions of other families who are likewise being threatend with losing the quality healthcare that they've needed for their families and their special needs children. In closing today's blog post, I would like to ask that if any portion of this message resonates with you - perhaps you have your own extenuating personal or family medical circumstances that requires timely access to specialists, perhaps, like us, you are raising a child with special needs who won't fit the cookie-cutter health and wellness checks offered under the new nationalized public health plan - then please contact your local state senators and congressional representatives. Don't delay, and make your voices heard.

Examine & Re-Examine

It's hard to believe how much I've learned about a subject that I would have NEVER imagined I'd have to learn. That subject - cerebral palsy - and its ever-evolving, changing nature in my own child.

Vision problems are pretty common in children with cerebral palsy with a number of different manifestations for how these vision problems can present themselves in children including farsightedness, nearsightedness, strabismus and a whole host of other visual impairments. Nearly one year ago, I had Taylor's eyes tested for the condition of strabismus because I'd observed an occasional crossing of her eyes...the incidence of her eyes crossing only lasted for a couple of weeks and then went away and we haven't seen a crossing of her eyes since those first few observations. Her eye exam for the presence of strabismus last year also checked out just fine.

Well, in recent weeks, I have begun to observe what I would describe as a lack of depth perception in Taylor's vision. For example, navigating up/down curbs or maneuvering around objects on the floor at her feet appear to go unnoticed by Taylor which occassionally leads to her tripping or stumbling over things because it's like she doesn't even see them and shows little awareness of objects that reside below her direct line of sight. I talked to a couple of Taylor's therapists/doctors - her neurologist as well as her physical therapist and occupational therapist - and they validated some of my recent concerns with Taylor's vision. They agreed that it is probably a good idea to have Taylor's eyes re-examined to either verify or rule out any emerging or changing vision conditions because there is some evidence that both hearing and/or vision in children with cerebral palsy can become worse with age.

Taylor's neurologist described it in this way:

Children with cerebral palsy will often develop problems with visual concentration over time. Many of the children with Taylor's type of cerebral palsy have to expend so much energy and concentration on keeping their body upright, controlling their movements and coordination, etc. that they will often have little left over to use for visual tasks. For example, asking some children with cerebral palsy to hold their body in good alignment, look at a toy and then reach for that toy, might be like asking you to read "War and Peace" while putting a bicycle together while also serving your friends and family high tea. Now, I realize that's a pretty colorful, imaginative analogy, but basically, as the neurologist described it, we are asking the child to do too much at one time - coordinate and control their impaired motor movements while also visually focusing upon other tasks. They're things that "typical, normal" children and adults take for granted, but children with cerebral palsy have to exert far more effort and energy to achieve the same abilities.

So, I have scheduled an appointment for Taylor's eyes to be re-examined. I only wish that we could get her in right away...unfortunately, so many of the pediatric specialists Taylor sees always have VERY, VERY, VERY booked schedules and our earliest opportunity to get Taylor in for an eye exam is early June. Bummer.

Oh, speaking of specialists that Taylor sees, that reminds me...we have another orthopaedic surgeon appointment for Taylor in about two weeks. This appointment will give us an opportunity to meet with the surgeon and discuss any changes to Taylor's overall bone/hip structures and strategize on any new plans of action for therapy, surgery or otherwise.

"Mom, I Can Walk Like You"

I thought I would update Twinsanity readers on Taylor’s progress with walking since some of these posts related to Taylor’s cerebral palsy and her overall progress have become some of the more frequently viewed posts on this site.

We have been having some difficulty of late getting Taylor to wear her AFO’s. AFO stands for ankle-foot orthosis which basically describes an apparatus designed to support the ankle and foot. While these may look very intimidating at first glance and somewhat intrusive, they can make a world of difference in a child’s ability to walk and maintain flexibility of their Achilles tendon. They have made a tremendous difference in Taylor’s ability to walk and have helped her gain strength and proper alignment that she would otherwise struggle with as a result of her cerebral palsy.

- Taylor's AFO's -

So, as I was saying, lately it has become increasingly challenging to keep Taylor in her AFO’s. The other day, as I was getting ready to put Taylor’s AFO’s on her feet, Taylor looked up at me and said as if to object to me proceeding with the placement of her feet into the AFO’s, “Mom, I can walk like you.”

I paused for just a moment to reflect on that sentiment from my 3-year old and it occurred to me that for the first time, my dear, sweet Taylor was communicating to me that she understood that she was different. At that moment, I saw nothing else but Taylor's face looking at me expectantly awaiting an answer back to her and in all of about 5-seconds I assessed the perspective that Taylor must be having towards her AFO’s. My feet, as well as her sister’s, are always bare; hers are always donning something else, something unusual to her sister and to her mommy. Taylor also always observes me (and her twin sister) put on shoes that look quite different than hers and she now wanted me to know that she could "walk like me" and by that statement, I believe Taylor was also telling me that she wanted to be like me - bare footed and apparatus-free.

My heart literally sunk heavy into my chest, and for the first time, as I sat face to face with my daughter Taylor, I was presented with a moment that I always knew would come since Taylor was diagnosed with cerebral palsy – a moment when I would be faced with offering explanations to Taylor. My husband and I have often talked about the day when Taylor would begin to become more self-aware, to notice that she might be slightly different than her sister and her peers and we have often talked about what we might say to Taylor and how we might say it when that time comes. Well, despite how many times you talk about that day coming, let me be the first to say, you're never ready for that day to come...

When I heard Taylor say simply, “Mom, I can walk like you” - since it caught me by surprise - the words that came to me were: “Taylor, you’re right, you CAN walk just like mommy but guess what, these will help you walk even better than mommy.” (I especially emphasized "EVEN BETTER THAN MOMMY")

It was a tough and sad moment for me. Tough because I knew this was perhaps the first of many more similar sentiments and conversations to come with Taylor in the years ahead. Sad because, in that moment, I longed for my daughter not to HAVE to be different for her sake. It was also, strangely enough, a happy moment for me. Happy because no sooner had Taylor uttered her words to me about wanting to “walk like me”, it was as if God had long ago already placed the words in my heart that my daughter would need to hear at that exact moment. It was as if, God in all his wisdom and love, knew that this conversation would take place on Sunday, February 22, 2009, as Taylor and I sat together on the floor preparing her little feet and legs for her special shoes.

I was also happy because in that moment, Taylor was right and I was there to tell her so – that she absolutely could "walk like me" and that with her special shoes, she would "walk even better than me”. Taylor seemed to like hearing that and allowed me to put her AFO’s on…

In just the short 24 hours since Taylor and I had this chat, I have since observed Taylor to repeatedly take her AFO’s off. She pulls at the little velcro straps that cross over her little ankles and at her calves. She simply will not keep them on…she can walk without the AFO's, which is awesome, however it’s not the best thing for her to do because the AFO’s provide stability for her, improve her overall gait and protect the overall physiology of her legs. I have not made a big fuss the last 2 days about Taylor keeping the AFO’s on knowing that I see her physical therapist this Wednesday and I plan to talk with the physical therapist about this new development and the new resistance Taylor is showing towards her AFO's.

The physical therapist had prepared me many, many months ago that at some point, Taylor would begin to resist the AFO’s and that we’d have to work together on devising some creative strategies to help Taylor become interested in her AFO’s again. Well, that day of Taylor's resistance to AFO's has come. I am looking forward to talking with Taylor’s physical therapist this week as I know Taylor not wearing the AFO’s opens up a host of adverse consequences that can impact her mobility and gait including physical damage to her ankles, hips and knees.

More posts on this to come after I speak with Taylor's physical therapist, so if you're interested, be sure to check back again later this week....

Weekend Outlook

The weather is sunny and warm in Northern California today, and it's going to be sticking around through the weekend. Awesome. With the unseasonably warm weather to enjoy, I'm planning lots of outdoor excursions for Paige and Taylor. (Mike is planning a golf outing with "the boys" for Saturday - it's the first break in cold weather, so I should've known he'd be hitting the golf course - but, he works so hard, he deserves it). There's a great park for the girls and I to visit on Saturday while Mike is golfing....and Sunday and Monday, we can look forward to a field trip or two since Mike will have a 3-day weekend to hang with the family. Be sure to check Twinsanity after the weekend is over since there are likely to be some new pictures posted from our fun, fabulous 3-day weekend.

In other happenings, today we had a routine appointment with Taylor's neurologist. Her neurologist is "pleased" with Taylor's progress and remarked that he "sees a considerable improvement in her walking since the last appointment 3 months ago..." He also signed a new RX order for continued physical therapy in the clinic as well as continued therapeutic horseback riding for Taylor for all of 2009 while also instructing me that physical therapy will need to remain the "cornerstone of services for Taylor's treatment and management of cerebral palsy for several years to come." He also said that he doesn't need to see Taylor back again for 6 months since she seems to be making such great progress. Good news all the way around for Taylor and us today!

Taylor: Physical Therapy Progress Report

I have just returned from the mailbox and opened the packet containing Taylor’s quarterly progress report from her physical therapist. Listed below are Taylor’s previous goals and her achievements in these areas to date as noted by her physical therapist:

SHORT TERM GOALS:

Stand in good alignment without assistance – MET.

LONG TERM GOALS:

Develop movements to assist in transitioning from one position to another using good alignment and good trunk rotation.

PARTIALLY MET – Taylor is able to transition fairly quickly from position to position however, her physical therapist noted that she “continues to lack some strength and stability that provides for safety in a school setting where she could be easily pushed, fall and/or hurt herself.”

NEARLY MET – Taylor is able to come to a full stand through half-kneel with minimum assistance.

MET – Taylor is now walking independently (praise God) however her balance and posture continues to need improvement while walking; in addition, the therapist noted that “Taylor will face some safety issues both in the classroom and on the playground” making it imperative that Taylor continues to receive ongoing physical therapy until she has further mastered her walking and her balance while walking.

PHYSICAL THERAPY GOALS FOR 2008-2009:

The physical therapist has outlined several new goals for Taylor for the remainder of this year and early next year:

1. Taylor will build continued strength and balance when walking and will progress to running, hopping and jumping.

2. Taylor will gain continued trunk strength to do several 2-foot hops simultaneously.

While these seem like fairly small, easily accomplished movements, for Taylor, it's not.

We basically have to break down each desired goal and movement into great levels of the most minute detail and sequencing and then have to facilitate one muscle movement to another again using the right sequencing and form...it involves a lot of repetition to create just the right movement patterning so that Taylor learns to associate how one movement varies over another and how one movement has to occur versus how another movement does. As we do the movements over and over and over and over again, Taylor begins to create "muscle memory" so to speak in how to move, in how to coordinate her movements, etc. and over time (what sometimes, as her mommy, feels like a really long time), Taylor then begins to master the movement on her own in a way that is desirable and in a way that is "normal" looking. And, looking "normal" is always our underlying goal of every physical therapy goal and activity that Taylor is a part of.

I continue to be amazed at how far we've come and how much farther we still need to take her! I also continue to be amazed at the physiology of it all!!!!! The body truly is an amazing thing....

So, while I am really pleased with Taylor’s overall progress to date….because there was a time when I thought she might never walk…and she is now walking independently….there is still so much more work to be done!

The physical therapist is recommending that Taylor continues to receive physical therapy at the clinic twice a week to further improve Taylor’s motor abilities and to help her progress further towards overcoming her disability. (Of course, I am completely on board with that and am 100% committed to following whatever program Taylor’s physical therapist advises). Maintaining Taylor’s physical therapy, at such a young age, will only continue to help her build the right foundation allowing her to continue to advance and eventually successfully overcome her disability as well as keep up with her peers physically, educationally, emotionally, and socially.

The 10 Commandments for Parents of Special Needs Kids

Just the other day, I came across what I'll refer to as the "10 Commandments" for parents of special needs kids...since some of the readers of Twinsanity are personal friends and acquaintances of mine who I also know wrestle with the daily struggles and challenges of raising a child with special needs, I wanted to post these "10 Commandments" on the blog as a simple reminder to all of us parents of special needs kids that while our days are hectic, our demands many and our schedules chock-full of doctor appointments, a myriad of therapy appointments for our child and the like, we have the unique privilege of raising one of God's blessings.

In fact, one friend of mine sums it up nicely stating that, "God only gives children with special needs to those parents He knows can truly handle it and who will help these children thrive....it takes a special parent to raise a special child."

10 COMMANDMENTS FOR PARENTS OF SPECIAL NEEDS KIDS
- Author Unknown

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow her, encourage her, expect her to develop to the best of her abilities.

3. Find and celebrate positive mentors: other parents, friends and professionals who can share with you their experience, advice, and support having walked in your shoes as a special needs parent or advocate.

Personally, I have found this to be one of the most important components to helping me raise a child with special needs. I have become friends with many of Taylor's physical therapists....I respect their advice and their wisdom as well as their experience and have found great comfort and strength in their friendship! I have also met a good number of other mothers who, while their child may have a different special need to contend with, share a very common language and experience in the joys and challenges of parenting a special needs child that I do. That commonality and our shared experiences raising a child with special needs is simply unmatched!

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because she gets more of your time.

This can be especially challenging for those of us who have more than one child. In my experience, juggling the demands and needs of Taylor while also striking a balance with Paige's interests and activities represents another interesting dynamic in our family life. Making sure that Paige is not lost in the shadows or shuffle of Taylor's many doctor appointments and therapy appointments each week is a high priority for me, but admittedly it is also one that is very difficult to achieve.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends, the public or anyone else for that matter.

AMEN. Enough said. This 6th commandment is pretty liberating, eh?!

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have already accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that many, many others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

I would also submit that a good, hard run or rigorous work-out at the gym helps too!

Taylor's Neurology Appointment & Update

Today, we had our regularly scheduled 6 month check-up with Taylor's neurologist. The appointment generally consists of the neurologist's observations of Taylor, her progress and management of her disability, any new emerging medical concerns, if any, and what we, as Taylor's parents, need to monitor in Taylor during the next 6 months until we meet with the neurologist again.

I always enjoy these appointments. Her neurologist has such a wealth of knowledge and such a breadth of experience that I always leave the appointments feeling very encouraged and optimistic for Taylor and her future. For the purpose of this update on the blog, I'll break down today's neurologist appointment into several sections below.

PHYSICAL THERAPY & TAYLOR'S OVERALL MOBILITY

Taylor Strutting Her Stuff On the Catwalk, YEAH, the Catwalk.

The neurologist was "very pleased" to see how well Taylor is now walking. He was "pleased" to see that Taylor is now gaining speed in her walking and is becoming more steady on her feet. The neurologist impressed upon me that continued stretching of her leg mucles and the range of motion exercises that I do at home as well as maintaining her physical therapy program at the clinic will continue to be very important, particularly as Taylor goes through growth spurts in the coming months. The doctor stressed how essential it is to keep Taylor's muscles stretched as she continues to grow and continues to gain strength and speed with walking in order to prevent contractures or further tightening of her leg muscles which can lead to injuries.

FORECAST FOR TAYLOR'S EARLY CHILDHOOD EDUCATION

The neurologist remarked that Taylor should be placed in a typical, mainstream classroom when the time comes for her to enroll in either preschool or kindergarten. He, once again, reminded us that Taylor has no intellectual impairments and therefore, will be able to excel academically as any "normal" child would in a regular classroom setting. This is the kind of information I like to hear! We always thought Taylor was a sharp little girl, but it's always nice to hear it from somebody else too...who doesn't love hearing how smart their kid is...so hearing that Taylor should only be placed in a regular educational classroom and should be expected to compete with her peers academically was truly music to my ears.

FUTURE CONCERNS & AREAS TO MONITOR

The neurologist noted that in the coming years, although Taylor will continue to demonstrate improved mobility in her walking and even in running, she will become at risk for certain "biomechanical" injuries.

For example, as her overall mobility improves, increased fatigue and injuries, particularly to her back, legs and hips can result. The neurologist referred to this as "physiological burnout" which is basically the sheer fatigue that occurs to young children with diplegia cerebral palsy due to the "high physical demands placed upon the body for their ability to adapt, compensate and manage their disability." The neurologist noted that sometimes this "physiological burnout" can be seen in a gradual (temporary) loss of function, decreased strength and stamina when walking/running, deterioration in overall mobility and coordination, along with physical exhaustion. The neurologist remarked that these impacts occur most often among those children with diplegia cerebral palsy who are the "highest functioning" (like Taylor) and who have been able to successfully compensate for their disability.

The neurologist continued by saying, "this is why physical therapy will continue to be a mainstay in Taylor's life for many years to come" especially as she continues to grow and her muscles/bones grow. The neurologist noted that as high-functioning children like Taylor continue to walk and progress in their physical abilities, they often begin to experience significantly reduced distances when they walk/run. The neurologist said the main reason for this is they experience increased fatigue when walking/running; therefore it will be vital to give Taylor a lifelong exercise program and recreational pursuits of a physical nature to continue to help her overcome fatigue and physical constraints inherent to her type of cerebral palsy. As Taylor becomes a young adult, Taylor will be able to manage her own physical recreational activities and maintain her own physical exercise program but until that time comes, we, as Taylor's parents must make it happen for her and help facilitate that to ensure that Taylor continues to make strides in overcoming her disability.

Finally, the neurologist noted that he will continue to monitor Taylor's progress, along with her team of physical therapists, keeping a close eye on any signs of deterioration in her physical abilities and/or levels of fatigue when she walks because at some point down the road, surgical interventions and other treatments may prove helpful to improving the efficiency of how she walks/runs; however the neurologist said that he would only recommend these types of interventions after Taylor has undergone many more growth spurts.

Horseback Riding

Today was Taylor's first day of horseback riding. We arrived at the ranch in Northern California about 20 minutes before the start of Taylor's riding lesson so that we could walk around the ranch and do a little exploring including a quick stroll down to the lake and then back again to the horse barns. The twins love to see anything resembling "the country" because after all they're pretty much just city girls and their 2-1/2 year old vast worldview of "the country" has largely been experienced only through some favorite stories and videos that talk about the sights and sounds of the farm and the farm animals. Bringing to life what they've only previously read about with mom and dad was a real treat for them today!

We took a moment to snap a few quick photos of the twins before and after Taylor's riding lesson.

Paige trying to wiggle away, Taylor trying to yank off her riding helmet.

Mike with Taylor (L) and Paige (R) sitting atop the farm well.

Taylor (L) and Paige (R)

Taylor (L) and Paige (R) sitting atop the farm well.

The horseback riding session was great! Taylor only fussed for the first 5 or so minutes when she first mounted the horse; however, by the time we'd completed one full lap in the arena, Taylor was having a blast. She was taught to pat the horse on the back while at the same time to give the command "walk on" to direct the horse to keep moving. Taylor seemed quite pleased with her little self.....it was as if she realized that she was in control and that just by giving the horse some simple commands, the horse would obey her and she absolutely loved that power!

During the riding session, Taylor was also given opportunity to sit in a number of different positions on the horse - forward facing, side riding and rear facing. The therapist and horse leader shared with me that eventually Taylor will be riding horseback while standing up and that that position will really help to facilitate an improved walking pattern for Taylor. WOW! A little tyke like Taylor riding horseback standing up! Now, that's going to be impressive!

Taylor was led through the arena by a trained horse handler and a trained sidewalker who acted as the lead equestrian/physical therapist. I walked alongside Taylor as well to be an extra set of hands and to help Taylor enjoy her first riding experience. My job pretty much consisted of helping to steady Taylor on the horse and of cheering her on with lots of "look at you, Taylor, you're riding such a big horse" and "Wow, Taylor, this horse really likes you" and all sorts of other 'atta girls.

There were a few times that "Star", Taylor's horse, was unsettled and was acting skiddish. That made me a little nervous at times. As the horse would occassionally jerk and jolt, it was a sobering reminder to me that this is a true test of our faith and trust as parents in the cooperation, obedience and patience of this several hundred pound creature to take care so that our little 20-something pound daughter would utlimately remain safe as she sat 6' feet above the arena's hard, dirt floor below. I asked the therapist if this was typical behavior of the horse and asked if there was anything wrong or if there was something bothering the horse. The therapist assured me that Taylor was very safe and that the horse would not do anything to jeopardize Taylor's safety. And, while I did believe the therapist and took her at her word, even so, whenever that horse would suddenly jerk its head or act a little more excitable than usual, I would wonder....

Taylor will continue one-on-one horseback riding instruction with trained equestrian/physical therapists every Friday and as the weeks go by, the horseback riding will be more and more customized to Taylor's specific needs and to advance her riding at her own pace.

While Taylor and I were inside the horse arena, Mike and Paige explored the great outdoors. Paige got to visit with some of the other horses and run around outside. While I know that Paige enjoyed herself in the country today, in the future, I will most likely not bring Paige with Taylor to the ranch because it's not really fair to Paige to not be able to ever ride the horses like her sister. Unfortunately, the ranch only allows riders who are part of the therapeutic riding program...bummer. It would be fun to have Paige experience the horseback riding too but at $100.00 per half hour riding session each week, we just can't do it. Besides, Paige is such a little busy-body, now that I think about it, I'm not sure if she'd be a good candidate for horseback riding yet anyways - she probably wouldn't stay on the horse, she'd probably try to jump off or run underneath the horse or pull its tail or ears.

Today's Swimming Therapy

Taylor has only been doing the aquatic therapy program for a few weeks now, but already I am noticing some big improvements in her overall walking and motor planning, not only during the swim sessions but following the swim sessions on dry land too.

This type of therapy is proving to be a great addition to her overall therapy regimen! She’s still getting all of the physiological, motor skills exercise and stretching routines that are achieved in her in-clinic physical therapy sessions each week, but the water therapy is definitely one of Taylor’s favorites because she doesn’t realize that she’s “working” and just thinks she’s playing in the pool. Once thought of as a ‘faddish cure’, water therapy, when combined with Taylor’s other physical therapy programs, seems to be netting significant benefits to Taylor.

Taylor is now showing improved coordination when walking independently and also when entering and exiting the pool. She is also improving her overall trunk/abdominal strength from all the exercises she’s doing while sitting on the kickboard in the water. Additionally, the swim therapist has been working with Taylor on improving her stair-climbing skills. This is a task that still presents quite a few challenges for Taylor on dry land. In the water, however, because of her weightlessness within the water and the warm water to keep her leg muscles relaxed, Taylor is now starting to walk up and down the stairs pretty efficiently in the pool. Today, she walked up 3 steps and only required minimal assistance from the therapist and walked down the same 3 steps with moderate assistance from the therapist. The challenge that Taylor is still encountering when walking down the steps is that she is not quite coordinating her weight-shift from one leg to the next. The therapist tells me that in time this will be achieved but it's one of the harder skills to acquire. In the meantime, the therapist is going to continue focusing on Taylor’s downward stair-climbing skills. The therapist has also recommended that we modify our house’s stair-rail system to a kid-friendly handrail which will make the stairs safer for Taylor when she's practicing walking up and down and to help facilitate correct form and movement patterns even further. Below is a picture of this kid-friendly stair-rail.

During today’s swim therapy, Taylor joined in a game with a few other tykes receiving therapy as well. She had a great time playing ball with them!

Is It Really Over?

Summer. Is Summer really over?

Where did the time go? I swear I ask myself this question more often than ever before – ever since the twins joined our family. It seems like just a few weeks ago that I was shopping for summer clothes and flip-flops…now, it’s time to start thinking about fall, birthdays, vacations and holidays. Soon we’ll be relegated to staying indoors more too. Bummer.

Speaking of Fall, I am scheduled to meet with some service coordinators from the local school district in October to discuss Taylor’s cerebral palsy, her therapy needs and the like. This is going to be a reality check for me, I know. I’ll be visiting some new clinics and meeting with a whole host of new therapists. I will also see new children. Children of varying degrees of special needs and disabilities. I imagine that there will be some children who will look a lot like Taylor – children who wear little braces on their legs. I imagine that I will also see some children who will remind me of Paige. These will be the children who show no obvious signs of developmental delay or disabilities but perhaps they have autism, a speech impediment or other special need. I imagine that I will also see some children being pushed in wheelchairs and walking with walkers and other special equipment. I think it will be another experience whereby I am once again reminded that Taylor is not a typical child and yet strangely enough I will also be again reminded that we are still very blessed and that it could be much worse. I am anticipating that this experience will be one of my more eye-opening experiences so far because I will again be encountering a brand new environment where there will be a good many children with special needs.

As I write this blog posting, I feel I must stop. I’m sure that I don’t even really need to clarify this, but will since I’ve already started down that path. I am very aware of how fortunate we are and how good we really have it, in the sense of Taylor’s disability. I feel very lucky to know that in this day and age, the possibility of Taylor growing up and living a very typical life is in her future. It’s going to continue to be a lot of work for her to overcome her disability but we have the hope that she is going to! And, of course, I'm not naïve….I know that the parents of children with other disabilities whom I know personally have far, far greater struggles than I do. However, I'm not one to compare myself to others. I never like to think that I've got it better, or that they've got it worse. I suppose it's all in what we know and what our personal experiences are or have been in raising a child with special needs... for example, I've never had a child with autism, I’ve never had a child with down syndrome, etc. so I won’t even pretend to possibly know what it’s like to be in another parent’s shoes who is caring for a child with another form of disability. I can only empathize and try to imagine but I know that I can’t truly appreciate or fully relate to their daily struggles. That said, it’s still hard at times….so, please bear with me as I talk about my experiences and how hard some days can be.

Anyways, back to the school district/therapy meetings...

I am hoping that I like the school environment and the services that are offered through the school district for Taylor. I want to feel confident and secure that in whatever environment that Taylor is in she is challenged, accepted and respected. I’m going to be looking for that perfect fit for her and want to know that she will be well cared for by the therapists that she will see at any new clinic or schools she’ll be enrolled.

I’ll keep you all posted as the upcoming school district meetings and any transitions in Taylor’s services begin to occur. I am nervous about this change in Taylor’s care and in her therapy programs but remain optimistic that the right people will come into Taylor’s life to help her further.

Some of Taylor's Therapy Is Actually Fun!

This week, Taylor began warm water therapy through Easter Seals. Her physical therapist recently recommended warm water therapy to further help Taylor improve her range of motion, muscle strength, endurance and overall mobility. The warm water of the pool is maintained at 92-94 degrees F allowing the physical therapists who work with Taylor to use the water’s buoyancy and resistance for therapeutic purposes.

Taylor loves the warm water and loves playing with some new toys in the water with the therapists. She was initially a little fussy and resisted some of the exercises that the therapist wanted Taylor to do, but eventually Taylor tolerated the in-water exercises and by the end of the session was having a great time!

As Taylor’s mom, I love the warm water therapy program because I get to see Taylor having so much fun in the water; and while she’s having all that fun, she is also still accomplishing something constructive and positive to further help her overcome her disability.

Taylor with Her Physical Therapist

Taylor Sitting on Kickboard, Strenghtening Her Trunk & Doing a Little Protesting

Taylor Playing on the Pool Ramp, Practicing Her Transitions from Sit to Stand

Shoe Shopping

Today, Taylor was fitted for another pair of orthotics, known as ankle foot orthotics (AFOs). The AFOs basically just help to stabilize Taylor’s ankles when she walks and give her a little extra support when she’s walking by improving the positioning of her ankles. Without the AFOs, Taylor’s ankles tend to roll in slightly so not only do the AFOs help with proper positioning of her ankles when she stands and walks but they also help to protect the overall joints and bone alignment so that she can stand and walk at her highest potential. The AFOs are worn inside of Taylor’s shoes and are custom-fit to her feet.

Taylor Tolerating The Orthotics Fitting, Paige Crawling Around in the Background

Taylor: Are We Done Yet? I'm Ready to Get Outta' Here

As a mother, the orthotics fittings always lead me to experience a range of emotions. On the one hand, I’m excited to get Taylor a new pair of AFOs because each time we get a new pair for her it is ultimately bringing us closer to her FINAL PAIR.

Eventually, Taylor will not have to wear orthotics at all because the intensive physical therapy program that she is in, coupled with the positive alignment corrections we are making with the use of the AFOs, will eliminate Taylor’s need for orthotics entirely.

Getting the orthotics is still a reminder however that my child is not like “typical” kids. I’ve often struggled with that as I find myself juggling a variety of physical therapy appointments each week and attending to the needs of Taylor on a daily basis. Plus, new orthotics also means new shoe shopping! Don’t get me wrong, I absolutely LOVE shoe shopping for myself and for the twins. What mom doesn’t love shopping for their kids?! Unfortunately, fitting Taylor for a pair of shoes that will also be compatible with her orthotics is very challenging. And, when I shop for Taylor’s shoes, I always bring a little fashionista mindset to my search for her shoes. I often vacillate between the need for function and fashion in Taylor’s shoes. Taylor’s shoes must be functional with her orthotics of course; but I also want her shoes to look good too.

And, so, Taylor’s newly designed and meticulously crafted orthotics that we picked up today will now be followed by many hours of me shoe shopping and searching for the perfect pairs of shoes for her. I’ll travel from store to store looking for those just-right shoes that will fit nicely over her AFOs. At some stores, I’ll find the cutest shoes only to discover that they won’t work with Taylor’s braces. I will get frustrated and sad. I will conquer many stores in my quest for new shoes for Taylor as I seek out fashionable and durable shoes that will fit easily and quickly over Taylor’s AFOs. The search will eventually bring me to a few magical pairs that will fit perfectly over Taylor’s braces while still also being stylish and girly-girl cute too.

I, will, of course be sure to show off the final shoe selections to you in a future post, so stay tuned...

Coming To Terms with Big News & Learning to Find New Hope

During the past year, we have come to face some new challenges and struggles. In June 2007, we learned that one of our daughters did not escape the statistics that we were warned of by the doctors during my difficult pregnancy. More than 50,000 children are diagnosed with cerebral palsy every year. Our daughter Taylor was one of them. Taylor is a bright, exuberant little girl, who happens to have a mild form of cerebral palsy (known as diplegia) which has affected her ability to walk.

After the initial numbness of the news of Taylor’s diagnosis wore off, we began to actively seek out physical therapists who could help Taylor. Our search led us to an awesome pediatric therapy clinic in Northern California.

Beginning with Taylor’s very first physical therapy session, she has worked hard day after day, both at home and at the therapy clinic. In just a few short weeks after beginning therapy, Taylor began to use her leg muscles in a way that she never had before, and for the first time since the initial diagnosis of cerebral palsy, as her mom, I felt a sense of optimism and renewed hope.

Taylor at Therapy Clinic with Her Physical Therapist, Doing Some Warm-up Leg Stretches

About 3 months into physical therapy, Taylor was fitted with a pair of pediatric leg braces, and almost immediately started achieving new things. Wahoo! Taylor started standing! Taylor’s physical therapist pushed her to her physical limits, stretching and strengthening Taylor’s leg muscles every week.

Taylor Getting Fitted for Her First Pair of Braces

A few more months of rigorous physical therapy along with continued practice wearing the braces and Taylor FINALLY started walking! YAY!

Taylor at Therapy Clinic, Working on Her Form When Walking

Practice Makes Perfect! Taylor Continuing to Perfect Her Form When Walking

As we have celebrated these first milestones for Taylor this year, we are ever-mindful of the significant role that Taylor’s therapist has played in Taylor’s life in making these accomplishments happen.

Words simply can’t express the happiness, love and pride we have felt the latter part of this year as our Taylor has continued walking. It sounds like such a simple thing to do, but for Taylor it’s not and it hasn’t been.

Today, Taylor enjoys a newfound confidence in her ability to walk. She now needs very little assistance from us in order to walk and only occasionally needs assistance by holding our hands. Taylor will continue to see her physical therapist for several years to come and the outlook for Taylor’s future remains bright and promising. The best part — Taylor will eventually not need to wear the leg braces at all and will one day even be able to run with her peers on the playground.

Playing with A Friend at the Park

- Photo: Taylor (L), Samantha (R) -

What I have learned from this experience having a child with special needs is that you come to appreciate the lives of children impacted by a disability and the families struggling to manage their child’s special need. When it is your child’s life who is affected by a disability, it becomes your life too.

I have also learned that children with special needs are real fighters! Our Taylor has been fighting like crazy ever since the moment she was conceived and came into the world. Taylor’s struggle to overcome her disability and to walk has taught me the extraordinary resiliency that even the smallest of children possess and I’ve come to realize that life is truly precious, something worth fighting for and that as a parent, you’ve got to do all that you can to make it count.

On the flip side, some of the experiences I’ve had first-hand as a mom having a child with special needs has taught me that at times it can be an isolating experience. Our family has had to stretch ourselves in many ways in order for us to deal with our child’s disability. My husband and I, who are both fairly private people, have had to learn to be more open and learn to talk more freely about our feelings as well as our daily struggles raising a child with special needs. Through this experience, I have also met a great number of other parents and families who are facing their own set of challenges in raising a child with special needs and have enjoyed the almost instant bond and understanding that comes with identifying with one another through our shared set of difficult experiences. These are the parents and friends who I have found truly understand the disappointments, frustrations and roller-coaster ride of emotions that come with raising a child with special needs. These are the folks who have helped make this un-chartered journey of raising a child with special needs more bearable because I’ve come to learn that while these other families are trying to manage and cope with their own challenges, they’ve also helped me to see that the difficult and overwhelming roles and responsibilities we must play in our child’s life also yield some HUGE benefits for us as parents and the impact that we have upon our child is likewise HUGELY rewarding!