Friday, August 29, 2014

The kids at school

Andrew has been spending a few hours at school during his three days a week slot and Allie is enjoying her full-day 4 days a week schedule.

Andrew's class has 6 spots but only he and two of the other kids have made an appearance so far.  He really seems to like the teachers (one of whom used to take care of Allie during her first year there) and hasn't had any trouble adjusting.  It makes me feel good that he likes it there since he'll be spending more time there once my maternity leave ends at the end of September.


Allie really likes her new class too.  One thing I've noticed is that the activities are significantly more advanced than they were last year.  The kids have to find and circle their own names on a wall sign in are their free time activities are more challenging (for example, stringing small beads to make jewelry, cutting pictures out of magazines to make collages, etc.).  It makes me appreciate that they transition classes because I hadn't realized that Allie had outgrown some of the default activities and these new ones push her to expand her fine and gross motor skills.  So far she's doing great and is so proud of a necklace she made the other day.  

Thursday, August 28, 2014

Physiatrist Check Up

Allie riding a mechanical horse during physical therapy

Allie had a check up yesterday with her physiatrist who monitors her physical development.  We mostly discussed three topics: bracing Allie's right foot, a emerging length discrepancy in Allie's legs, and what else we should be doing.

Bracing

Last week, Allie got the AFO that her PT recommended and has been wearing it a couple hours a day.  It hasn't made a world of difference but when she's walking slowly it seems to make her more aware of putting her right foot all the way on the ground.  Our goal with the brace is to get a "heel strike" where her heel touches the ground before the rest of her foot.

I was excited to hear what they physiatrist had to say about it.

Much to my surprise, the physiatrist hated it and told us to take it home and throw it away.  She thinks that Allie's range of motion is really good and that the brace is just getting in the way.  She said that when she walks without the brace Allie uses all the correct muscles and her foot is in the right direction.  However, when she walks with the brace she isn't using the muscles in her foot, and not using these muscles will ultimately make them weaker and make her more dependent on the brace.

The doctor did a test with the brace.  She put it on Allie, made sure it was on correctly and her heel was all the way down in the brace, let Allie run around for 5 minutes, then she examined where her foot was in the brace.  Her heel had crept up in the brace and was disguising that her heel still wasn't getting all the way down.  So, not only is she not getting a heel strike, she's potentially weakening her foot and hurting her gait by wearing it.  Not exactly what we were going for.

The physiatrist thinks that the primary thing messing with Allie's gait is increased tone in the gastroc muscle in her calf that only kicks in when Allie is trying to use her foot.  This increased tone makes it hard for Allie to get her heel all the way on the ground when she is walking or running.  The doctor said that there are three options for what we can do.

  1. Nothing.  She said that Allie's overall gait is pretty good and since she is using the correct muscles and not hurting any joints with the way she walks now, we could just ignore it entirely and see how things progress.  She also said that the scientific literature is starting to indicate that getting a heel strike at Allie's age is "over rated" and that it may not be as big of a deal as was previously thought.  She recommended that we keep stretching daily and encourage lots of physical activity.  If we choose this option, she should come see her again in 3 months to reevaluate.
  2. A more intense customized brace.  We could try a stronger brace that would firmly hold Allie's heel in place when she walked.  However, the doctor cautioned that this kind of brace is often uncomfortable, still may not give Allie the form that we're hoping for, and may also lead to a weakening of the muscles in her foot.  
  3. Botox in just her leg.  We told the physiatrist all about Allie's negative experience with Botox in her arm but the one nice thing Jonathan and I had to say about the experience was how well it worked in her leg.  The doctor said that she wouldn't recommend getting it in Allie's arm again but a treatment on just her leg could help even out her gait at least temporarily.  However, she cautioned that there is only a chance that it would lead to a sustained gait improvement.  Botox would give Allie a chance to establish normal gait patterns and this could be helpful if later in life she wanted to do a tendon lengthening surgery that would more permanently address the issue.  Also, since the Botox would be just in her leg, she wouldn't necessarily have to be sedated.  The doctor did warn though that being held down and having burning injections administered can be pretty traumatic for kids and for that reason she would suggest having her sedated.  If we went this route, we could do the injections as soon as a month from now or whenever we thought it would be best for Allie.     
While Jonathan and I haven't decided yet, we are leaning towards doing nothing and maybe considering Botox in a couple months.  More thoughts on this coming soon.


Leg Length Discrepancy

During the exam, the doctor noticed that Allie's right leg is 1 cm shorter than her left.  We had never seen this before and it is something we will watch in future appointments.  If the discrepancy is an absolute length difference then it is basically not a problem.  Lots of normal healthy adults have a 1 cm difference and it never interferes with daily life.  She even noted that there is a mechanical advantage for Allie to have a slightly shorter right leg since her right toes don't lift up as high as the left toes, so having a little extra height in her step makes it less likely she'll trip.  

However, we will have to address the issue if the discrepancy continues to grow.  She said that there are surgical ways to lengthen the shorter leg, but they are invasive and painful, and there are ways to temporarily stunt the growth of a longer leg by stapling growth plates in the leg.  This would constrain the growth in one leg until the other leg could catch up.  

We don't need to do anything about this for now other than keeping an eye on it.


What Else Should We Be Doing?

This is always my big question for the physiatrist.  This appointment we got a glorious answer: nothing.  She thinks that Allie is growing and developing well and that we are doing more than enough to keep on top of things.  She recommends that we continue regular PT and OT and that we consider repeating the KKI constraint therapy program next year.  

Monday, August 25, 2014

First Days at School


Today was the first day of school for Allie and Andrew.  I'm still on maternity leave until the end of September but we want Andrew to spend some time with his new teachers before then so he can get used to everything and everyone.  Allie had a really hard time getting used to daycare so we were hoping to ease his transition.  Little did I realize that Andrew wouldn't care in the slightest.  He spent 4 hours there and ate a lot, slept, went for a walk, and cuddled with his teachers.  He's a sweetheart.  Once he's in the swing of things, he'll be going there 3 days a week (Monday, Wednesday, and Friday).

Allie likes her new class too.  Many of her friends from last year are in her class again along with some new friends and a friend from her first year.  She'll be there full time 4 days a week with Tuesdays off for our therapy day.

We're looking forward to a good school year.


Thursday, August 21, 2014

More Gymnastics

Allie continued her gymnastics exploration today at a local gymnastics center during their open gym.  We'd been to this center before to meet with a physical therapist who works there but this time our in-home county PT met us there to facilitate some gymnastics play.  Jonathan has been working some crazy hours lately so he was able to take off the afternoon and meet us at the gymnastics center.  Allie was so surprised to see her daddy and wanted to show him all the cool stuff she could do.  I was happy because he was able to hang out with Andrew so I could play with Allie. 

We only got photos of some of the cool things that Allie was doing, but the rings were one of the first things she wanted to try.  Look at her hold herself up with two hands!!!  She could only hold it for a second or two at a time but I was so thrilled that she wanted to try and that she was able to hold on so well with Righty.


She also worked on the balance beam.  Balance is difficult for her because the right-sided weakness throws off her center of gravity and makes it hard for her to hold herself up on just her right leg.  But, look at her rock it.  She doesn't love the balance beam but at least she's willing to try it.


Her favorite gym activity was the long trampoline that she got to run down and then jump into a giant foam pit.  I think we spent half the time there doing this activity over and over again. 

video

Once our gym time was up, we all went out for lunch and Allie had her first milkshake.  She LOVED it.

I asked Allie which of the two gymnastics classes that she liked first.  I was really hoping that she liked the open gym more because it's a drop in when you feel like it kind of commitment versus the super expensive 12-week class.  Much to my disappointment, she preferred the real class.  (She indicated which class she liked by saying "I liked the one with the boy with the hair" and then she held her pointer finger along her upper lip to signify a mustache.  The primary teacher had some pretty intense facial hair going on and it clearly made an impression on Allie.)  The class that she liked is only available during weekdays, which won't work with her regular schedule.  But now I know that she prefers the class structure to the open gym.  I have two more class options that I'm considering so more gymnastics trials to come!  

Monday, August 18, 2014

Gymnastics

Allie is out of school this week for her summer break and we're taking advantage of the extra daytime to try out some local gymnastics classes.  All the classes we're trying out are for typical kids so they're not specifically therapy classes although they are very therapeutic.  She seemed to have a great time in the class today.

I talked to the teachers before the class started to tell them about Allie's right-sided weakness and mention that she might need a little more help.  Jonathan and I talked about how we were going to say this to the teachers without freaking them out or overloading them with information.  We settled on "Allie has some weakness on the right side of her body and sometimes has a hard time using her right hand."  We specifically decided not to mention the cerebral palsy or the stroke because both of those terms, while technically true, seem scarier than necessary considering how functional Allie is.  The teachers were appreciative of the heads up and were really helpful the few times Allie needed a little help.

The kids had a number of organized activities and a lot of free time to explore the equipment on their own.  During the free play, she was so brave on the big trampoline.  (She's the one in the purple shirt and the pink shorts.)






She also really liked climbing on all the fun obstacles.   


Some of the structured activities included jumping around a cone obstacle course on a hopping ball.  I was a little nervous that Allie wouldn't be able to hold on well enough to get off the ground, but once again she proved me wrong.  The teacher did a great job encouraging her to hold on strong with both hands at the beginning and then she took off on her own.  I was impressed.


The next activity was for the kids to hold onto a bar, walk their feet up a ladder, and then do a horizontal pull up to touch their noses to the bar.  Allie was the last to do this activity and I could tell she was a little nervous.  But my brave girl ran right up and did a fantastic job.  I think she impressed the teacher.  When Allie hopped down and yelled "Ta daa!!!" the teacher said "Way to go Allie!  Great job not being afraid of a challenge!"


The last activity of the day was a huge zipline.  Allie got to go first this time.  When the primary teacher lifted her up to grab on, I heard him remind the other teacher to make sure she had a good grip.  Allie held on wonderfully and squealed when she plopped into the foam pit at the end of the zipline.


Allie seemed to have a great time and I was excited to hear what she thought about it once it was all over.  When I asked her how it was, she cooly said "It wasn't too bad."  Talk about the understatement of the year.  

Our next gymnastics trial is on Thursday when our county PT is meeting us at a big gymnastics center during their open gym time.  We toured the center with one of their PTs a couple months ago and liked it but didn't love the PT.  They offer typical classes as well so maybe that will be a good fit.  We shall see.

Saturday, August 16, 2014

We Have a Roller

video

Hooray for Andrew!

County Fair


We all went to the county fair today and had a blast.  This was Allie's first fair and she could not be more excited.  She and I were looking at the fair website yesterday so that she knew what to expect and she saw photos of kids getting their face painted.  She immediately declared that she wanted a rainbow on one arm and a star on the other.  This morning when I walked into her bedroom, the first thing she said to me was "We're going to get the rainbow on lefty and the star on righty?"  Excitement was officially inspired.  The whole drive to the fair she kept repeating "Where are we going Mama?"  I'd say "I don't know Allie.  Where are we going?"  She'd shout: "THE FAIR!!!"

Once we got inside the fairgrounds, we walked through the animal houses.  Allie met goats, chickens, rabbits, cows, and pigs.

Petting the goat
She then got a rainbow painted on her arm and found some tractors to play on.



We then scouted what rides we wanted to try.  Allie picked the carousel and a spinning dragon ride.

Carousel
The Dizzy Dragon
Inside the Dizzy Dragon
Jonathan and Andrew cheered us on and slept, respectively.  In fact, Andrew slept the entire time we were there so he didn't make it into any of the photos.  Here is a shot of him with his Daddy last night.

Wednesday, August 13, 2014

New Physical Therapist and Maybe a Brace

Allie met with a new physical therapist last week for an evaluation and had her first real PT session with her yesterday.  I've never seen Allie work so hard in a PT session and everything she worked on was challenging.  I'm feeling optimistic about this new therapy addition.

Yesterday, Allie walked on a treadmill for the first time while trying out an ankle foot orthosis (AFO).  Specifically, she tried a JumpStart Kangaroo AFO that looks like the one on the right.  I have been somewhat anti-brace because I really want her to work on developing strength to work around her increased muscle tone on her own, but she's been growing like a weed and her right leg seems to be getting tighter.  Her walking is getting more asymmetric as a result.  I explained my hesitancy to the PT and she said that her leg is going to get increasingly tighter unless she really stretches it out to work through her growth spurts.  The AFO would force Allie to keep her foot in a stretched position and she could wear it for just a few hours a day, maybe just in the evenings so she wouldn't have to wear it to school.  I was still not convinced until I saw her on the treadmill with the trial brace and she walked so much more evenly.  There were a solid 5 steps of perfect heel-toe cadence.  This all sounds worth a try.

The PT also asked if we'd consider Botox again for her leg.  Allie had an awful time with Botox in her arm, but Jonathan and I were both pleasantly surprised with how it worked on her leg and how the results stayed even after the Botox had worn off.  We meet with her physiatrist on Friday and plan to talk about maybe doing it again just on her leg.

Aside from the treadmill and brace discussion, Allie did a stair obstacle course during her session.  She also climbed a rock wall for the first time.  She was pretty good at going up but getting down was really hard for her.  She wanted to lay down on her stomach and slide down, which didn't work very well as you can imagine.



She also got to ride the tricycle around.  Note the duct tape to keep her right foot from slipping off the pedal.  It's nice to see her work so hard to push with her right leg.  It seems like she could build a lot of strength this way.


We also got a copy of her evaluation from last week.  Here are some of the highlights with some acronym expansion and images that help clarify the jargon.  Everything in parentheses is my addition.

****************************************
OBJECTIVE

Musculoskeletal:

Strength:  Strength was observed functionally.  No against gravity dorsiflexion observed on her RLE (right lower extremity) - with gait she doesn't achieve a heelstrike and when asked to duck walk she is unable to on the right. She can perform a squat to the floor and return to standing without UE (upper extremity) use but has a wide base of support and has increased pronation on the right.  Allie can stand from the floor with the use of her UE.  She can complete a bridge with nice extension from the floor and a sit up with UE assist or minimal assist without UE use.

Hip and knee range of motion within functional limits BLE (bilateral lower extremities) except right ankle - limited dorsiflexion on the right.  Difficult to measure accurately secondary to Allie being very mobile but she is lacking full neutral by at least 5 degrees.  She has increased dorsiflexion with her knee flexed so her gastroc (gastrocnemius muscle---the bulging part of her calf) is more involved in her limited range of motion. 


 

Bridge

Posture Assessment:  In standing, noted decreased weight bearing on her heel on the RLE.  Mild calcaneal valgus (flat feet).  In sitting, W sits but her mother corrects her to "criss cross" which she can self correct with cues. 
W sitting.  It's bad for your hips.
Neuromuscular:

Gait: Allie ambulates without a heelstrike on the RLE with a wide base of support, slightly abducted and with mild tibial valgus (knees too close to eachother; "knock knees").  She has a nice speed of gait but with a decreased step length on the RLE.  Allie runs on her toes with a wide base of support and decreased arm swing on the right.  She can complete 30ft in ~5.45 seconds.

Tone: Modified Ashworth Scale: 3 = Considerable increase in muscle tone, passive movement difficult in right gastroc.

Gross Motor Development:
The following was clinically observed during today's session:
  • Rolling: Can complete independently supine <-> prone (back to stomach and stomach to back).
  • Moving in/out of sitting: Preference for W sitting but can transition to sitting with LE crossed.  She can transition to kneeling and can maintain this for 10 seconds.
  • Transitioning to standing: With UE use.
  • Walking: Can walk down the hall on tip toes, difficult heel walking on the RLE secondary to lack of dorsiflexion, can walk backwards down the hall with decreased speed.
  • On a balance beam can walk ~2 steps but then steps off the beam with her right foot vs placing it in front of the left.
  • Jumping: Can jump from one rainbow stepping stone to another with a two foot take off and symmetrical landing.  Allie is able to jump forward 25" with a two foot symmetrical landing.  She can jump down without assist from an 8" step - she was fearful to try a higher step.  She can jump over a 3" hurdle with a 2 foot symmetrical landing - with the higher 6" hurdle she had frequent loss of balance and deferred to UE assistance.  She can jump 2-4 inches in the air on two feet.
  • Stair climbing: Allie can complete a reciprocal pattern up the stairs (only one foot touches each stair) with one hand held assist.  She descends the steps with one hand held assist or rail with a step to pattern (both feet touch each stair).
  • Single leg standing on right for multiple attempts, about 1 second
  • Single leg standing on left for multiple attempts, about 1 second
  • Throwing/catching: Allie can throw overhand and underhand with her left hand. She can throw a small ball ~5" or a larger ball ~10".  She does demonstrate good power but decreased accuracy with her throwing.  She has difficulty catching with a ball bounced to her or at her chest height - she doesn't use her right hand to assist with catching.  She does better trapping a ball when sitting. 
  • Kicking: Allie can kick a ball with preference for her left foot.  She can kick with the right foot but with less power and accuracy.  She does better with a static ball vs a rolled ball.
  • Tricycle: Allie was able to pedal several reps on each LE but required minimal assist to initiate the tricycle movement and keep her right foot in place - improved after using duct tape to stabilize the RLE.  Minimal assist to pedal 100 ft.  Required assistance with steering as well.
  • Climbing:  Allie could climb the ladder with moderate assistance for cues to hold on with BUE and completed a step to pattern up and down.

Standardized Test

The Peabody Developmental Motor Scales - 2nd Edition


Stationary:
Age Equivalent: 33 (months)
Percentile: 25

Locomotion:
Age Equivalent: 34 (months)
Percentile: 25

Object Manipulation:
Age Equivalent: 34 (months)
Percentile: 25

EVALUATION
Allie is a 3.5 year old female s/p (status post) an intra uterine CVA (cerebrovascular accident---a stroke) resulting in right hemiplegia presenting to outpatient physical therapy.  She is very pleasant and interactive and wants to be independent and do things herself.  She does have cautious periods with new activities such as climbing a ladder and riding the tricycle.  Her hemiplegia involves more of her UE but she does have gastroc tightness/spasticity limiting dorsiflexion with limits heelstrike and causes her to loose her balance with uneven surfaces.  She may benefit from an orthotic or splinting with a stretching program to assist with optimizing her gait pattern and assisting with balance.  She would also benefit from overall gross motor skill development including single limb stance, jumping, climbing, running, the stairs and throwing and catching. 

Prognosis: Patient's rehabilitation potential is good.  (I'm sure they say this for most kids but this is the first time I've seen it.  I'd be lying if I said I didn't feel some relief when I read this.)  The prognosis for stated goals is based on the following indicators: compliance with home program, likelihood to attend sessions, patient support system, patient motivation and interaction skills.  

Problem List / Impairments:
  • Balance
  • Range of motion 
  • Functional mobility
  • Gait abnormality 
  • Strength 
  • Coordination 
  • Motor planning 

Short Term Goals:
  1. Allison will gain >5 degrees of right ankle dorsiflexion to help prevent tripping and optimize gait pattern.  Time frame: 2 months.
  2. Allison will be able to perform single limb stance on each LE x3-5 seconds demonstrating improved balance.  Time frame: 2 months.
  3. Allison will be able to step onto uneven surfaces without falling 3/5 reps demonstrating improved balance. Time frame: 2 months.
  4. Allison will be able to jump over a 6" hurdle with a two foot take off and symmetrical landing.  Time frame: 2 months. 

Long Term Goals:
  1. Allison will ride a tricycle without LE stabilization x10 feet.  Time frame: 4 months.
  2. Allison will be able to consistently complete a reciprocal pattern ascending and descending the steps with one rail or less.  Time frame: 4 months.
  3. Allison will be able to catch a >5" ball with 2 hands 3/5 reps. Time frame: 4 months.

Monday, August 11, 2014

Big Sister Party

Big Sister
One of Allie's friends from school threw her a big sister party to celebrate her admission to the big sibling club.  It was such a great idea and she had a blast! They had a bounce house set up in their basement and the kids basically ran around for two plus hours, bouncing between games outside, toys inside, and the beloved bounce house.  They then had pizza and watched and cheered for Allie as she was presented with a bright pink Big Sister sash.  All this was then followed by cake and ice cream.  Could things be any better?  She loved all the attention and is so proud to be a big sister.

Aside from the cool party, we have been enjoying some time at the local splash park.


When we were there this weekend, Allie saw some older girls doing gymnastics on the lawn.  She was in awe of them and started trying to do the moves on her own.  I was amazed at how much she could do and how motivated she was.  I'm now looking to get the girl into gymnastics ASAP.


video

Thursday, August 7, 2014

Developmental Pediatrician Report

Early morning story time in Mommy and Daddy's bed with Allie, Andrew, and Baby (the bunny)

We got the report from Allie's developmental pediatrician yesterday.  Here is the short version:

Reason for Consultation
The patient was a 3-and-1/2-year-old, bright, preschool age girl with a history of a right hemiplegia secondary to an intrauterine stroke.  The patient has fine and gross motor skill delays secondary to her in utero stroke.  She returns today to discuss her neurodevelopmental profile, overall progress, and treatment plan.  During this 60 minute visit, more than 50% of the time was spent in counseling and care coordination.

Developmental
The patient is using language to request and to comment and to initiate with others including her friends.  Her mother has observed her in good interactive play when there have been play dates in place.  The patient is able to take shoes and socks off and is working on other dressing skills.

Behavioral
The patient continues to be strong-willed but this does not seem to interfere with day-to-day activities. She did demonstrate her strong-willed tendencies during office today and was reluctant to give up using the red marker.  These behaviors did not interfere by mother's report with the patient's preschool program.  (The doctor's note was generous with this comment.  Allie dictated almost all of the activities that they did, including where the doctor should sit, which markers he should use, and she insisted on testing his reflexes after he tested hers.  At one point he looked at me, smiled, and said "she has CEO potential!") 

Physical Examination
The patient has a tendency to keep her right hand in a more fisted position but uses her right hand well to assist her left hand.  The patient's hand can be opened and she did not seem overly sensitive to my touching her right arm or hand.  She does have some increased muscle tone on the right side, especially the right upper extremity over the right lower extremity.  Muscle mass and strength seem good.  She had a tendency to keep her right upper extremity slightly flexed at the elbow.  She does have increased tone in her right ankle but can assume the functional flat-foot position.  When walking, she does have a toe-heel strike pattern on the right and the heel-toe strike pattern on the left.  Her heel tendon reflexes were brisk on the right at 3+ and 2 to 3+ on the left. She does have a plantar extensor response on the right and a flexor response on the left.  (When I first read this, I didn't think he was right about the toe-heel pattern with her right foot.  I keep telling myself that really she had a flat foot pattern with her right, but after the evaluation I took an honest look at it and he is totally right.  It's funny that after all this time dealing with the therapists that I'm still sometimes oblivious to what is really happening.  It reminds me of when she was just a couple months old and I kept telling myself 'it's OK that she's not using her right hand *that* much.  I think it's getting better...')

Developmental Testing
During developmental testing today, selected items from the Gesell and other developmental tests were administered.  The patient did imitate a circle and a cross with the latter emerging at 3-1/2 to 4 years of age.  She made an excellent attempt at a four sided square.  When writing, she she does prefer her left hand as would be expected, and goes between a fisted and emerging tripod grasp. The patient was able to identify objects by use and could tell me that she had two eyes, skills that typically emerge between 3 and 3-1/2 years of age. She answered all "what" questions that typically emerge between 3 and 4 years of age.  She identified expressively 4 pictures, typically seen by 4 years of age, but did need a prompt when "labeling the watch."  When the examiner gave her "wa," she followed through and said, "watch," which might suggest some minor difficulties with retrieval of language.  The patient also drew a picture of her mother with a head, eyes, mouth, ears, and legs, which would be consistent with a child around 3-1/2 years of age.  (I don't think Allie had an issue with recalling the word "watch".  He pointed to a picture of a watch and she started telling him about the cool watch that her BFF Abby gave her.  She kept saying "I have one just like that at home" or "Mine is cool" or "Mommy and Daddy have them".  I think she just didn't understand that he wanted her to say "watch". 

Impression
The patient was an engaging, interactive, and very capable 3-1/2 year old girl with a history of a right hemiplegia secondary to an intrauterine stroke.  She does have a hand preference for her left but uses her right hand to assist well.  She continues to have a toe-heel strike pattern on the right side but is not using any orthotics presently.  It has been recommended that she undergo a gait analysis.  We did discuss that working with an experienced physical therapist in the community, both from a treatment standpoint but also asking the question about what orthotics and other tests are needed, could be quite helpful.  The patient's developmental evaluation today is quiet consistent with a child who is 3 to 4 years of age.  She is articulate, bright, and veery capable despite her motor difficulties.

Recommendations

  1. We did discuss the patient's gains and the ongoing work she is doing with the Infants and Toddlers Program and with her private OT.  I would suggest continuing these services.  I did suggest a private PT look at her gait and help decide whether she would need any additional orthotics, as well as suggesting if additional assessments, such as gait analysis would be needed.
  2. I was glad to hear that the patient had been seizure free now for 2-1/2 years and looking forward to hearing what the child neurologist has to say about her overall treatment plan. 
  3. The patient will continue to see her physiatrist and her pediatric ophthalmologist. 
  4. I would continue to have the patient attend a typical preschool program and to provide ongoing play opportunities with friends to facilitate peer-to-peer interaction. 
  5. We did discuss early reading and her interest in letters and sounds and introducing books that have rhyming, such as Dr. Seuss books.  I would continue to do a lot of reading to her and begin to ask her to tell you about the story that has been read.  Eventually, I would ask her what might happen next in the story, to work on making inferences, which builds on reading comprehension.
  6. We did discuss providing ongoing play opportunities for the patient.  I would try to do this once or twice monthly with one other child.  I would ask the patient to pick two activities that she would like to do with her friend.  Keeping these play opportunities short, perhaps 60 to 90 minutes helps to ensure their success.  Ending on a snack is a good way to make a transition to home for the playmate. 
  7. I did suggest that I reevaluate the patient 1 or 2 years or sooner if concerns were to arise.

*****Updates since the evaluation*****

Allie met with the new PT that the developmental pediatrician recommended this past Tuesday and we really like her.  She did a rigorous examination and evaluation and Allie had a lot of fun.  I am excited to see the evaluation results and we will be continuing weekly private PT with her.

I have become obsessed with our local library.  We went to pick out books with Allie and she was so excited.  Andrew and I went back a couple days ago sand checked out a bunch of Curious George and Clifford books, which are her favorite.  Even though the library is just a short walk from our house, I hadn't been going much.  Allie was so hard on books that I didn't feel good about her playing with the library books.  While she's much better being gentle with books, she still isn't allowed to have the library books in her bedroom and I think not having constant access to them makes them even more desirable.  I asked her the other day if she'd rather watch an episode of Curious George or read a Curious George book; she chose the book.  Success! 

Grandma Bets was visiting from California yesterday and got to meet Andrew for the first time.  I forgot to take a picture (doh!) but Andrew really liked meeting her.  When I got home from dropping her off at her hotel, I went to Allie's room to kiss her goodnight.  The first thing she asked was "Where did Grandma Betsy go?  Will she come back soon?"  We hope so!

Here is a video of Andrew waking up from a nap and Allie being obsessed with me not shutting the door.  He makes the funniest noises all the time. 

video

Saturday, August 2, 2014

Developmental Pediatrician Update and Class Field Trip


Field Trip Photos

We had Allie's annual check up with her developmental pediatrician this week and I'm happy to report that she's still meeting or exceeding all of her developmental milestones.  (You can read about her past appointments here and here.)  He was particularly impressed with how well Allie is talking and that she is interested in learning to read.

He and I talked about some of my concerns with Allie's gait.  We have been considering enrolling her in a gait-specific physical therapy program but I haven't had the bandwidth over the last couple months to follow through with it.  The nearest one I know of is in Baltimore at KKI and the idea of driving an hour each way has been too much for me to consider.  Allie and I had met with a new private physical therapist that operates inside a kids' gymnastics center and it seemed like it could be a good general exercise program for her, but it wouldn't specifically address her asymmetric walk.  Plus, her county PT whom we love thinks that Allie would get just as much out of a regular gymnastics class. We've also been looking at the PTs at the Children's Hospital but they don't have anyone who specializes in gait and they seem to be massively understaffed at the moment.

The development pediatrician put us in contact with a PT group he likes (and that our insurance covers) and we start weekly private PT with them next Tuesday.  He suggested that we conserve some effort and postpone the KKI gait program in favor of trying this local PT for a while.  Sounds good to me.

We also had an interesting conversation about being more selective with therapies.  When Allie was first diagnosed, we packed the poor girl's schedule with every intervention/therapy that we could think of.  I think it was helpful for her but in retrospect I think it may have been even more helpful for me.  It made me feel like I had some control in an otherwise frightening and overwhelming situation.  As she got older and more functional, I was able to take a step back and just enjoy what an awesome kid she is.  Moving her OT and Speech to her school was a huge step in feeling like we had so much more going on in out life than Allie's recovery.  About that time, a lot of my anxiety about how she was going to end up dissipated.

The developmental pediatrician's main point was that Allie is transitioning to a time in her life where her social and intellectual development need to be the priority and we shouldn't let her physical progress and intervention get in the way of that.  He wanted to make sure that we don't pack Allie's schedule with a bunch of activities that are not going to benefit her as a whole person.  I really like this doctor and I appreciated his assurance that it's ok to take a step back and make sure she's enjoying her childhood and that we're enjoying her.

In terms of follow-up, we have two homework assignments:  (1) have at least two playdates with her friends each month and (2) go to the library and get her some "early reader" books.  She has a playdate at least once a weekend so we're already doing alright with that one.  We took a walk to the library the other day and let her pick out some early reader books.  So far she really likes them and we talk a lot about sounding out the words.

Since Allie is doing so well, we were told to follow up in 1-2 years or earlier if needed.  I like that our follow-ups are getting further and further apart.

On Thursday, her class had a trip to a local nature center where they got to look at birds, plants, and learn a little about local history.  This is the first field trip that neither Jonathan nor I chaperoned but luckily one of the other parents sent around some photos of the kids having a great time.  Allie was excited to tell me how much she learned about owls.

While Allie continues her adventures, Andrew has been busy sleeping and eating.  So far (knock on wood), he has been a very mellow baby who loves his bassinet and a good snuggle.