AFO, SMO, Oh My!

The alarm went off at 4am, Monday morning.  It was early.  We were tired but ready to start our day.  Luckily, the big boys were sleeping at their grandparents house; we didn't have to worry about them.  We just had Josiah (and us) to get ready.  Our aim was to leave by 5:30am.

We were close.  It was 5:37am.  We were driving down our street, heading towards the highway.  Josiah's appointment with Orthopedics (at Children's) was scheduled for 9:30.  Children's, in perfect conditions, is about one hour away.  We knew we may be affected by rush hour traffic.  Thus, we were prepared to beat it.

Surprisingly, there was already traffic despite the early hour.  None-the-less, we did well getting in to the major city without the usual anxiety and palm sweating.  We were parked in the parking garage at about 7:15.  We walked leisurely to the hospital.  After a few quick pit stops, we headed to the cafeteria.  We enjoyed a nice buffet breakfast - eggs, toast, bacon, homefries, fruit, etc.  It was only $14 (for both of us) and the food was quite good (which we already knew).

We headed up to Orthopedics around 9am.  By 9:30, we were in a room awaiting the MD.  We provided a brief history of Josiah (including early history - open heart surgery, etc).  We explained that the PT (physical therapist) is concerned regarding his low muscle tone, especially in his ankles.  They examined him.  It didn't take long for them to agree with the PT.  Their diagnosis:  "Down Syndrome and hypotonia."

As you might recall, Down Syndrome is the presence of three copies of the 21st chromosome (where only two should be present).  Hypotonia is described as: "a state of low muscle tone, often involving reduced muscle strength." (wikipedia).

Research seems to indicate that bracing young children who have hypotonia (particularly ones who are also diagnosed with Down syndrome) can assist in providing stability, confidence, and even aid in correct bone formation.  It was no surprise that the MD prescribed AFO's (ankle-foot orthosis).  Specifically, bilateral (both feet) SMO's (Supra Malleolar Orthosis).  "Sure-step" was recommended.

According to SureStep's website (http://www.surestep.net/):

"SureStep is the most effective means of providing stability to children who pronate, when standing or walking.  This patented, dynamic system allows children to gain stability, while still allowing normal movement and function."  This is an image of pronation, found on the internet.



This is a recent picture of Josiah, standing:

The idea of 'braces' (AFO's) was first brought up about two months ago, when Josiah started weight bearing.  At first, the PT wanted to wait to see what his ankles would do.  When weight bearing is so new to a child, it is not uncommon for ankles to turn inward.  After about a month, it became clear that intervention might be necessary.

When you hear the word 'braces,' different images can come to mind.  Images of Forest Gump may come to mind.  Images of children affected by polio, in years gone by, may come to mind.  Few of those images reflect current orthotic intervention.  Here are a few images of days gone by:


            

Here are what the SureStep's look like:

     


Thursday morning found us at the Orthotist's office.  He took measurements of Josiah's feet and ankles.  The measurements and "prescription" from the MD (from Monday) will be sent to the company.  A custom set of braces will be made for Josiah.  They will be ready in about 2 weeks.  Once received, Josiah will see the orthotist again for his "fitting."  Then he'll be good to go.

The SureStep's pictured above are the exact style that Josiah is getting.  SureStep does make other braces tailored to different problems and needs.  The ones above are tailored to young children with hypotonia, pronation, instability in weight bearing, inability to maintain independent standing, and under 50 pounds.  Our oldest (age 6) even got to pick out the design - he chose skateboards for his littlest brother :)

I am excited to see the boost in confidence when Josiah starts wearing these.  Shoes will now become a 'normal' for Josiah (who up until now spends most of his time in bare feet, like his mother lol).

All in all, it's been a productive week.  In addition to getting Josiah's orthoses figured out, we also had 3 EI (early intervention) appointments.  C even squeezed in a doctor's appointment.  It's Friday and Mama is pleased.  We finally have a few days with very little going on.  It's long overdue, very needed, and extremely welcome!

Have a wonderful weekend, friends!

SureStep is the most effective means of providing stability to children who pronate when standing and walking. This patented, dynamic system allows children to gain stability, while still allowing normal movement and function. Children with low muscle tone who have trouble with stability due to pronation can now walk, run and jump without the delays and instabilities that often result. SureStep is not a different brace, but rather a completely unique system that manages the foot and ankle without over-managing. - See more at: http://www.surestep.net/#sthash.maPgVWJ5.dpuf

SureStep is the most effective means of providing stability to children who pronate when standing and walking. This patented, dynamic system allows children to gain stability, while still allowing normal movement and function. Children with low muscle tone who have trouble with stability due to pronation can now walk, run and jump without the delays and instabilities that often result. SureStep is not a different brace, but rather a completely unique system that manages the foot and ankle without over-managing.

SureStep is a revolutionary concept in bracing, specifically designed for children with normal to lower muscle tone who:

1. Realize moderate to severe pronation when standing and/or walking.
2. Display a general instability when pulling to stand and during cruising.
3. Have developmental delays and are late in learning to advance beyond cruising around furniture.
4. Are under 85 pounds.
   *(see SureStep BigShot for kids over 85lbs.)

- See more at: http://www.surestep.net/#sthash.maPgVWJ5.dpuf

A Whirlwind Of A Week

This was a busy week.

Last Sunday, Josiah took his first ride on a schooner boat.  He was joined by numerous family members.  It was a beautiful day.  However, between the sun hat and life jacket, Josiah was not impressed.  It was two nice hours in the fresh air regardless.  It was a good experience for him.

"Is this hat and jacket really necessary?"

On Monday, we brought Josiah to his playgroup.  This was one of the last groups before closing for the summer.  As usual, Josiah had a great time.  He stood nicely at the lego table.  He even crawled through a tunnel a couple of times (something he's struggled with previously).  

Notice how his left ankle turns in?  That's why he needs to be seen by orthopedics.

 

 

Monday afternoon, his EI child care worker came.  He loves K.  He had his usual good session.  Monday evening, the boys had their hair cut.  They all look a little older (and cooler for summer).

Here's Josiah playing peek-a-boo with his new haircut :)

"Peek a boo!"

Wednesday, he had his usual PT session with D.  He worked hard but made his discontent known.  He's made such strides recently but this week was full of complaints lol.  None-the-less, the continues to do well in weight bearing.  He continues to improve his skills in standing.  He'll be seen by orthopedics next week; we will find out whether or not a brace will be helpful.

As soon as D left, Josiah was changed and we were out the door.  Off to the audiology clinic.  We arrived a few minutes early and checked in.  Considering he was sound asleep in the van, his mood remained stellar.  We were called in; I provided them with updates (they hadn't seen him since the tender age of 6 weeks).  Josiah sat in a high chair for the duration of the evaluation.  The results were basically good:

Josiah can hear out of both ears.  
Hearing in the left is better than the right.  
The difference is likely caused by fluid in the ear (a typical problem for him).
Eliminating the fluid will likely cause symmetrical hearing (same in both ears).
Eliminating fluid will help with speech.
Josiah's nerves respond very well to sound, further suggesting fluid in the ear.
ENT is recommended for possible tube placement.
Developmentally, Josiah responded as they would expect any 21 month old to respond :)

It's all good news.  The tubes don't frighten me.  Our frame of reference is open heart surgery.  Therefore, I expect this to be a walk in the park, as they say.  By the close of day on Wednesday, we had an appointment scheduled with an ENT.  That will happen in September at Children's satellite location.

Friday morning, we were up and out early with the three boys.  It was time for the dentist.  For the big boys, a routine six month check up.  For Josiah, a first time visit.  They all did well.  Josiah has all of the correct teeth for a 21 month old child.  He wasn't thrilled and tried to bite a few times; he shed a few tears but did very well, overall.

Our plans for today were derailed.  We were going to an annual carnival, at a children's center.  However, with the heat index at 100+, we decided to have a stay-at-home day.  So, that's that.  That has been our week.

Tomorrow, we are getting together with family.  Monday, we go to Children's for Josiah's orthopedic appointment.  I'm anxious (not in a bad way) to hear their recommendations.

Inspired by Adoption

I have always been fascinated by the idea of adoption.  As far back as I can remember, I have wanted to adopt a little girl.  At one time in my life, as I got older, I wondered if I would ever marry.  I thought adoption might be my only option.  Ironic that I sit here, now, with three boys.  The dream of a girl still unfulfilled.  As I go about my day to day business, I don't long for another child; I don't long for a girl.  As I watch my friends with their daughters, I often thank God for blessing us with boys :)  Though I don't think much about adoption any longer, I was reminded of it's omnipotent power the other day. 

Earlier this week, a pastor at a Virginia church put out an unusual plea: Agree to adopt an unborn baby with Down Syndrome and save him from being terminated. You see, a couple in the pastor's congregation found themselves pregnant.  Their unborn child had been diagnosed with Down Syndrome.  The couple felt unable to care for such a child.  They were feeling overwhelmed and desperate.  They were considering abortion.  The pastor asked them for one day - he would attempt to find a family for their unborn child.

It must have seemed a daunting task.  He persevered none-the-less.  He took to facebook and asked the world for help.

To his amazement, the church received over 1,000 phone calls and emails from around the globe from families asking to adopt the child.  With the help of the pastor, and a local adoption agency, the field was narrowed down to three families.  Each family will be interviewed.  The birth parents will choose a family for their child.

I am amazed at the selflessness of those who can choose another family, and situation, for their child.  It takes courage, compassion, and intense love to make such a difficult decision.  I have a good friend from college who placed her son in an adoptive home when she, herself, was just a teenager.  Though I've known her for almost 20 years, I remain in awe of her strength.  My respect for her cannot be described in words.

As for the current story, I pray for the birth parents as they complete this pregnancy and prepare to say goodbye to their baby.  I pray for the selected family that they welcome this baby with open arms - fully prepared for the joys (and struggles) they may face when they fill their home with this little person, with an extra chromosome.

I also pray for the pastor who, without help from above, took a tragic set of circumstances and turned it into a miracle.

“It is under the greatest adversity that there exists the 

greatest potential for doing good, both for oneself and others.”

 ~ Dalai Lama XIV

For those that may be interested in adopting a child with Down Syndrome, here are a few places to get you started:

http://www.dsagc.com/programs_adoption.asp


http://reecesrainbow.org/

http://specialneedsadoption.rainbowkids.com/Down_Syndrome.aspx

As with anything, be sure to research your options.  I have provided a few links but have no personal experience with any of the above agencies.

 

 

Making a List and Checking it Twice

No, I have not been Christmas shopping.  I have not even started that list yet.  However, I have had a running tally of appointments that I was supposed to make and hadn't gotten around to it yet.  So, this morning, I took the bull by the horns and grabbed my phone.

Josiah was first seen by audiology shortly after birth.  He had failed his newborn screening.  He was essentially cleared.  We were supposed to follow up with them at one year.  Well, Josiah was checked by audiology at Children's twice since then.  Both times, results were inconclusive.  So, we decided to schedule this follow up for the local office (where he had had his first screening).  By the end of next week, that follow up will be done!

I had scheduled Josiah for his first dental appointment back in January.  Kids with DS tend to have increased levels of bacteria in their mouths.  They also tend to have more dental issues.  Well, his DS clinic was in January.  I jumped to the conclusion that he would be seen by dental at the clinic.  As circumstances would have it, the dental staff was at a conference the day we were they.  Therefore, Josiah was never seen.  I've been meaning to call our local office to reschedule that.  By the end of next week, that appointment will be completed!  (And, as luck would have it, they are able to see the older boys at the same time).

Oh yeah, when I talked to the dental office, they asked about Josiah's health.  When I told them about Josiah's OHS (open heart surgery) last January, they asked for something in writing from the cardiologist.  They need to know if Josiah requires pre-meds for dental visits.  Wow!!!  Not once have I ever considered that possibility.  I said, " I don't think so."  As I thought about it more though, I wonder....  My Mom has a steel plate in her toe and requires antibiotics before dental work.  Josiah's sternum was put back together with steel ties after surgery.  Hmmmm.  Well, needless-to-say, I have a call in to the cardiology department.  I'm waiting to hear from them. 

Meanwhile, Josiah's orthopedic appointment is in a few weeks; His next DS clinic is in September; and, his next vision follow up is in October.

There!!!!  I did it.

Now, I just need to call the pediatrician's office at the end of August to schedule his flu shot.

My theme this week: It truly is the little things :)

Mama's New Found Freedom

In the days after Josiah's room being moved upstairs, I have found freedom I'd forgotten.

As previously described, our once completely-open basement became two bedrooms, an office, and small play area.  However, all the 'separate' rooms shared the recessed lighting.  Therefore, if Josiah was asleep, the lights had to remain off.  If we needed something in our bedroom or I needed to access my desk computer, we did so in the dark.  The boys could only play downstairs if Josiah wasn't napping/sleeping.

Not only were the boys not utilizing their play area, I was mostly avoiding my office area.  It simply had become too inconvenient.  

All of a sudden, Josiah's room is upstairs and the room is (mostly) open again. I can blog at all hours of the day and night.  Case in point: Josiah is napping now; Mama is blogging, with the lights on. 

Before Josiah awoke this morning, I was putting things away and had no concern for the lights being on.

What a glorious freedom it is.  

Sometimes, my friends, it truly is the little things.

Banana Splits for Ryan

When I went grocery shopping the other day, I was careful to purchase a few special items: strawberries, bananas, icecream, and whipped cream. I knew I would need them today. Today is July 8th. It is the day we have banana splits for dinner.

We do this in memory of Ryan.

I first learned of Ryan Roberts when Josiah was a baby. Ryan was born with Down Syndrome and a congenital heart defect. Josiah was so much like him. Ryan’s heart condition had led to pulmonary hypertension (just like Josiah). They both had undergone open heart surgery. That is where there stories become different…..

At 21 months old, after another heart surgery, doctors told Ryan’s parents there was nothing more they can do for Ryan. Instead of focusing on recovery and EI milestones (a focus we are fortunate enough to have), the Roberts were left to devise a bucket list for Ryan.

It would take ten times the woman I am, to handle that situation with the style and grace of Ryan’s parents. In a short time, they completed many things on Ryan’s bucket list.

Ryan pet a puppy, played with finger paints, and received a speeding ticket (for racing in the hospital hallway). He dressed in cap & gown and graciously received his diploma. He even had a (root) beer with his Dad to celebrate his 21st (month) birthday.

During those difficult days, a friend asked Ryan’s Mom what people could do to help. She replied, “Just go create a memory with your kids. Just go put a banana split down in front of your kids for dinner and watch their faces light up.”

And so, as she wished, her friend set out on that endeavor. “Ryan’s Banana Split Party” was created on facebook. Before long, people from all over the world were posting pictures of their families eating banana splits for dinner.

On July 8th, 2012 Ryan’s Mom posted the following on her facebook page:

“My HERO fought in typical Ryan fashion – he ignored our words telling him it was OK to ‘go.’ Ryan’s last night was a peaceful one. His monitor did not beep the entire night….He had a fabulous night."

These were our banana splits right before we 'dug in' tonight.

To Ryan's Mom - please know that your son had a tremendous impact on lives around the globe.  He is loved and remembered always.

"Just go create a memory with your kids." ~ Ryan's Mom

Moving On Up

We live in a raised ranch with three bedrooms upstairs and finished basement. At least, that's how it was when we first moved in. Back then, it was just C and me. We shared a bedroom upstairs. We each had our own office. Downstairs, we enjoyed a finished basement. The other half of the basement was a utility/storage/laundry room.

It was just right.

When our oldest was born, my upstairs office became "the baby's" room. My office moved to a corner of the finished basement.

It was just right.

Almost three years later, our second was born. We put flooring down in our attic and moved all of our stored items upstairs. C turned part of the utility room into a finished office, for him. C's upstairs office became a second kids bedroom.

It was just right.

Then, my sister, needed a place to stay. Without thought or reservation, we gave her our bedroom. C turned one corner of the finished basement into our bedroom, complete with walls. We slept downstairs; everyone else slept upstairs. Everyone had their own room.

It was just right.

Then, Josiah came along. Our bedroom wall was extended to form a second enclosed bedroom. Josiah had his own room. He slept downstairs with us. The finished basement (which was once used as a playroom) contained two bedrooms and a very small play area for the older boys. It was what it was.

It was just right.

My sister moved out last year. The older boys were moved to the larger bedrooms. The smallest of the three rooms became a playroom/storage area. With all that we've had on our plate, the arrangements were simply left as is. Until now.....

This past weekend, we emptied out the smaller bedroom & moved Josiah upstairs. He has a beautiful new bedroom. He sleeps on the same floor as his brothers. We tore down the wall that completed his makeshift basement bedroom. The finished basement is open once again. I am delighted!!!!

I still have a mess to contend with, but it is just right :)

Vision and Ortho

A couple of weeks ago, Josiah had his first appointment with Children's Ophthalmology Department.

We arrived early to the satellite office and filled out 'new' patient information.

Josiah was first seen by an optometrist, who was young and sweet. She held up long pieces of cardboard in front of Josiah. On each one, a black and white picture was strategically placed. She watched to see how quickly Josiah's eyes would focus on the pictures. He performed brilliantly!!!

Next, she dilated his eyes....he was not impressed. However, thanks to a few toys, Josiah became distracted quickly.

After the 20 minute wait for his eyes to dilate properly, he was seen by ophthalmologist. She looked at his eyes, and performed various tests.

In the end, the results were good. Josiah's eyes are healthy!!! He is showing early signs of nearsightedness - this is not uncommon. Both his parents are also nearsighted :) Despite the early signs, the doctor doesn't feel that intervention is needed at this time.

We'll follow up with her in six months.

In the meanwhile, Josiah has continued his weekly physical therapy sessions. He is making huge strides. He has been practicing his weight bearing skills. He is able to stand, with assistance. He is not yet taking steps, but he is working hard.

A few weeks ago, the PT voiced concern over his low muscle tone (specifically in the ankle area). Josiah's ankles turn in when he stands (especially the left foot). She believes that a temporary ankle brace may be helpful. It would serve three purposes: It would help stabilize the ankle; It will boost his confidence; and, it may encourage his to start taking steps.

So, after a few quick calls and emails, Josiah's first visit with orthopedics is scheduled. In a few weeks, we shall see what the recommendations are.

Now, I just need to schedule his standard follow up with audiology & make his first appointment with dental.

Ahhhh! Then, I think we'll be all set until his flu shot in September.

I'll keep you posted :)