Ups & Downs

Some of my friends have recently pointed out to me that I’ve been a little MIA lately. And, it’s true. If I owe you an email, a phone call back, or a thank you note, well, I am really, really sorry. We’ve had so much going on the past couple of weeks and I’ve been quite busy with daily life with the twins. I will get back to you…and you, and you, and you, and you. Eventually.

This week sure has been a week of ups and downs. First, good news at our neurology appointment for Taylor. Backtrack to the details on that appointment in this post here: http://ashley-twinsanity.blogspot.com/2008/10/taylors-neurology-appointment-update.html

That was on Monday, an up day.

Then came Wednesday, a down day.

Wednesday began with an appointment to our physical therapy clinic for Taylor where I had a chance to sit down one-on-one with Taylor’s physical therapist. I talked with the therapist about the recent meeting that I had with the school district and their dismissal of Taylor as “no longer eligible for physical therapy services” once she starts school because in their words: “Taylor’s doing great, looks like she’s doing so well.”

The physical therapist was livid; just as I have continued to be ever since my meeting with the school district last week. How is it that the physical therapist, Taylor’s neurologist and pediatrician as well as my husband and I all agree that Taylor is doing as great as she is ONLY BECAUSE she has been in a very rigorous physical therapy program for the past couple of years and that it is no coincidence that Taylor is doing as well as she is simply because she’s adapted or overcome all aspects of her disability on her own. That is just not the case.

The physical therapist put it in very plain words for me: “If Taylor doesn’t continue to receive the levels of physical therapy that she has been receiving in the coming years and if the school district does not make these resources accessible to Taylor in her early school years, she will most certainly regress, her leg muscles will stiffen, her range of motion will become limited....” Her therapist even said, “We could lose so much of the ground and progress we’ve made with Taylor that she could wind up in a wheelchair.” (GASP)

These words and references to a wheelchair by Taylor’s physical therapist, whose judgment and experience I wholly trust on such issues as child development, physical therapy for special needs children, etc., resulted in my having a little meltdown. I have remained a little discombobulated, a little freaked out and a little panicked…I have also felt sorry for Taylor, sorry for myself, and wondered why us, why so much to deal with (because there’s much more than just Taylor’s physical progress at stake, more that I just won’t go into right now, but more, more, more, much more).

Then came Thursday and I woke up feeling like, it’s going to be okay. We’ll get through this. Taylor will continue to be fine and continue to make progress in overcoming her disability. We’ll just continue to take things one step at a time, one day at a time. I took Taylor to her warm water therapy class today at Easter Seals where at the end of the session, I was informed that her swim services would likely come to a halt in December when Taylor turns 3.

I suppose that the school district has already begun making their rounds to Taylor’s service providers and Easter Seals too must have received the memo from the school district saying how “great Taylor is doing.” Arrrrgh.

According to Easter Seals, “there are children who may benefit more from our services than Taylor in the coming months.” And, then once again, I heard “Taylor’s doing great, she’s really doing well.” Okay, that confirmed it – they did get the school district memo!

I hesitated for a moment, then protested. I said in my kindest, sweetest voice, “I agree, she’s really doing well and I’m so happy to see that she’s making such good progress; however, I am very concerned that interrupting or discontinuing these types of services for Taylor too soon will have negative consequences and will halt Taylor’s progress significantly. We're going to need to revisit this issue.” Blah, blah, blah.

I then shared with Easter Seals what Taylor’s lead physical therapist shared with me….that without continued physical therapy services for Taylor during her early school years she will likely regress and may even be facing time in a wheelchair. The Easter Seals therapist understood my concerns and more importantly she heard me and said she would speak to her supervisors about what they might be able to offer to Taylor after she turns 3…so, now we wait and see. I am hopeful that Easter Seals won’t discharge Taylor from the program because they think she’s doing “so great”. Let’s really translate “so great” and just what that means….I believe it actually means that they think Taylor is doing “good enough.” Well, “good enough” is not “good enough” for my child! In fact, the "good enough" expression doesn't really exist in my vocabulary at all.

So, I am pressing on and continuing to fight the good fight for our little Taylor. I know that God only gives us that which we can bear. Somedays, particularly this week, I have found myself saying, “God, you have really overestimated what I can bear…” In the end though, I know that God will open the right doors and I am just praying and trusting that He will continue to help Taylor and make her much-needed physical therapy services accessible to her in the months and years to come. Of course, I'll be doing my part and fighting the school district and whatever other bureaucracies, including our insurance company, may rise up to impede upon Taylor's access to physical therapy services...and, in the end, that truly is all that my husband and I can do. Fight the good fight and keep the faith.

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.

Transitions for Taylor

Today, I met with several service coordinators from the local school district to discuss Taylor’s cerebral palsy and her anticipated therapy needs as we begin to plan for her school-age years.

I had been anticipating this meeting for quite some time now. As I met with the school district personnel and service coordinators, I spent a good deal of time talking with them about Taylor’s disability, her medical history, her progress in managing/overcoming her disability, her challenges/struggles, and ultimately our goals for her in the future. The service coordinators and school staff, in turn, spent a good deal of time observing Taylor. They observed her gross motor skills (walking, jumping, climbing), her fine motor skills (holding crayons, coloring, manipulating small toys/objects), her language/communication, her self-help skills (eating, dressing, toileting, etc).

Taylor was noted to have...

- Age-appropriate fine motor skills. YAY!!!!
- Age-appropriate self-help skills. YAY!!!!
- Age-appropriate langugage/communication skills. YAY!!!!
- Age-appropriate social/recreational/play skills. YAY!!!!
- Delays in her gross motor skills, as we expected, due to the type of cerebral palsy she has.

After an extensive evaluation, the therapists determined that Taylor would not be eligible for ongoing services. Yep, not eligible.

Now, keep in mind, to this point, Taylor has been receiving ongoing weekly therapy sessions (physical therapy, aquatic therapy, occupational therapy, therapeutic horseback riding) for the past 18 months. To be told today, that Taylor will not receive ANY of these services once she begins school was very disappointing!

Now, on the face of it, you might be thinking to yourselves, “oh, well that must be a good sign…Taylor must be doing well enough that she doesn’t need the continued, intensive schedule of physical therapy, occupational therapy, etc.” That is not the case. The fact of the matter is that Taylor is doing as well as she is BECAUSE SHE HAS BEEN RECEIVING AND PARTICIPATING IN ALL THESE SERVICES FOR SO MANY MONTHS.

When I pressed the school district further, much to my dismay, they would not budge. I learned that the school district’s team of physical therapists and service coordinators are currently very understaffed, are currently only working part-time due to state budget constraints, have to serve 1/3 of the entire county in which we live, and as a result have a significant waitlist for pediatric services. At best, the school district informed me that they would only monitor Taylor’s progress by merely checking back in with Taylor for observation either one time every six months or one time every twelve months to simply update her charts and school records.

As Taylor’s mom, this is simply unacceptable. I am not about to truncate my child’s progress or hinder her abilities to improve and continue to overcome her disability because the school district is unable to provide continued treatment and therapy services for her. So, now I will continue to advocate to our insurance company for all the services that Taylor has been receiving and in my estimation needs to continue to receive. Thank God my husband and I have a good PPO insurance plan!!!! Between the various therapy services that average $150.00 per hour/5 times a week (that's $3,000 per month of therapy services), the purchases of her little braces to the tune of $1,500.00 each/purchased 2 times a year, our insurance company must really love us. Yeah, right! If the insurance company doesn't continue to provide for all these services, perhaps I will have to go back to work in order to help pay for these services...whatever it takes...whatever I've got to do....Taylor is not going to be short-changed with getting whatever she needs. As a parent, I must consider the rest of her life, the quality of her life. God has entrusted Taylor to Mike and me and charged us with the awesome responsibility of helping her to become all that she can be. We know that she can ultimately overcome her mild disability but not without continued hard work and dedication from both Taylor and a committment from her mom and dad to make it happen.

So, tomorrow I will begin the discussions with our insurance company to make sure that they will continue to provide these much-needed services for Taylor. I just pray that the insurance company will continue providing these services to Taylor. Over the past 18 months, she has made such incredible progress and I really believe that with continued intensive weekly therapy services during the next couple of years Taylor will achieve her maximum potential, complete motor independence and overcome her disability.

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.

An Update

It’s Monday night, the kids are sound asleep, the kitchen is clean from dinner and I’ve just sat down to enjoy a nice evening in front of the boob-tube.

Last week was really hectic and crazy since my better half was on travel for work. He is back now, so the weekend was great! I loved just being able to hang out with the twins and my husband without having to rush to any appointments for the kids and without having any schedules to contend with.

But, today, it was back to the grind of appointments….Ugh.

I had a meeting with some service coordinators this afternoon related to Taylor’s therapy services and programs. We discussed what changes may come in her continued need for therapy services when she turns 3 years old. She’s made such awesome progress that there is a really good chance that we may be able to start scaling back some of the therapy appointments that have been keeping us so busy Monday - Friday the past several months. It sounded like from my meeting today that we may only need and want to continue with the physical therapy in order to further help her overcome her disability. She is already doing great. And, she’s definitely an independent walker now. So, independent in fact that when you try to reach for her hand as I often do with both Paige and Taylor whenever we’re out somewhere, Taylor pulls her hand back and says, “I’ll do it myself.” And, I just think, “Yeah, you go, girl!”

Anyways, so while today was a hectic day, the appointment to discuss Taylor’s progress was pretty positive in terms of the overall outlook for Taylor. As far as her physical therapy goes, soon we will be adding horseback riding as well to her physical therapy program. Horseback riding will offer Taylor some physical therapy benefits but it will also be something that I know she will absolutely LOVE. And, from my perspective, anytime we can keep the physical therapy fun and make it an enjoyable experience for Taylor, I’m all for it!!!!

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!