Thursday, June 28, 2012

Stone Soup 062812

I certainly didn't mean for this much time to pass before making a new entry in this blog.  Apparently, I have been busy lol.

Jesse (age 5) completed preschool at the end of May.  Two weeks ago, he started "kids college."  It's actually a reading readiness program to better prepare him for Kindergarten.  When I think back to Kindergarten, I fondly recall recess, snack, and 'fun.'  I don't particularly remember K as being "academic," per se.  Boy, things have changed.  I'm amazed as I prepare my first child to enter the public school system.  Academics is stressed from day one!!!  MCAS starts in the 2nd grade.  This seems crazy to me.  But, alas, "it is what it is."  Luckily, Jesse is a smart boy who will do wonderful things.

James (age 2) completed one play group and is finishing up another.  He will start his summer playgroup in a couple of weeks.  He continues to work with speech therapy to improve his communication skills.  He begins 'Jesse's school' (preschool) in September.  He is excited to be a big boy now.

Each week during the summer, we will be taking the kids to various museums, parks, etc.  It's a summer tradition we started about 3 years ago.  The destinations vary but always prove to be a great family day out.  We look forward to each day trip we schedule. 

C & I are well and continue to be amazed by our children, every day.  We couldn't be happier. 

Saturday, June 9, 2012

Follow-up at the Pediatrician

Wow!  OMG!  Holy Canoli!  That's all I can say :)

Friday morning, we headed to the pediatrician (Dr. W) to follow-up regarding Josiah's ears (he was found to have fluid in his ears on Thursday).  The two year old was also due for an appointment, so we killed two birds with one stone.

Josiah was weighed upon arrival (the norm, at this point).  He weighed in at 13 lbs 2 oz.  The RN was pleased.  I remained quietly anxious, as weight has been a struggle forever!  When the Dr. W. came in, he asked about Josiah's weight.  I cautiously answered.  The pediatrician was HAPPY!  I mean genuinely happy!  He kept repeating, "I just can't get over Josiah's weight."  "He looks amazing!"  "He's doing great!"  Dr. W. checked Josiah's ears - the fluid is minimal.  There's nothing you can do for fluid in the ears, at this stage.  So, we will check in with Dr. W. just before the next audiology appointment in Boston.

I joked with Dr. W. about how Josiah falls in the 10% percentile for weight and my 2 yr old falls in the 9% percentile for his weight.  Dr. W. replied (regarding the 2 yr old), "He did.  Now he falls in the 5th."  I laughed.  It goes to show that maybe our kids are just little lol.

To say I was relieved would be an understatement.  I was excited, elated, pleased, satisfied...all things good :)  We left with no mention of need for a next appointment (except the ears follow up). 

I am eternally grateful!

Friday, June 8, 2012

A Great Clinic Visit

Yesterday, we were up early....4am.  I showered and dressed.  I woke Josiah at 5am for his first feeding.  At 6am, we were out the door.  We had to check in by 8:30am....we wanted to beat the traffic going in.  We were successful.  We arrived at 7:30, parked, had breakfast in the cafeteria, and checked in around 8:15am.  We were early for clinic; the other families hadn't arrived yet.  It was our lucky day....Dr. D. (head of the clinic) was ready to meet with us.

We like Dr. D.  We had met with her, at length, while i was still pregnant.  We saw her briefly after Josiah's open heart surgery.  It was nice to see her again.  Josiah was weighed (13lbs), measured (length 25inches, head circum. 42.5cm).  Josiah is tall, but underweight.....ugh!  Thankfully, he's healthy & strong - she would just like to see him gain a little more weight; she concurs with the pediatrician.  She suggested we talk to nutrition more about it. 

Meanwhile, I asked about Josiah's thyroid.  A lot of folks with Down Syndrome have hypothyroidism, but a few have hyperthyroidism (which would account for slow weight gain).  KF (lactation consultant and friend) and I had discussed this at length.  She told me about a test called Sensitive Thyroid-stimulating hormone test; I asked Dr. D about it.  She agreed to perform the blood test.  We were grateful. 

Dr. D. asked a lot of questions and examined Josiah.  Other than his weight, Dr. D voiced no concerns about Josiah.  She said, "I love that he makes such direct eye contact."  He was amazing and full of smiles!  I think she was quite smitten with him.  Who isn't???  :)  

Next, we met with the speech therapist.  We were encouraged to introduce Josiah to an array of flavors, textures, and the like.  A few suggestions involve dissolvable foods and using mesh-feeders.  We were all in agreement that Josiah wants to eat more.  She was anxious to get started.  While sitting on my lap, Josiah was introduced to a fruit bar & a dissolvable veggie puff.   I wish I could've gotten pics of Josiah's face while he experimented with his new treats.  It was hysterical.

Then we met with the physical therapist.  She was quickly taken by Josiah's personality.  Out came the playmat - he was happy to get out of that car seat for a spell.  Josiah quickly demonstrated his ability to roll over, lift and turn his head, prop himself up with his arms, and reach for toys.  He was also quick to strike up a conversation with him.  She said he was the 'most talkative' baby that had been in to see her :)  The session looked not unlike his sessions with D.  Josiah is doing well.  The goals are the same.

The nutritionist was our next stop.  She agreed that we can increase Josiah's 'real food' intake, first to twice per day, then quickly moving to three times per day.  She suggested giving Josiah 1/2 tsp of olive oil with each meal for the purpose of increasing calories.  She agrees that Josiah is on the low end of the weight scale.  He falls in the 10-20 percentile for weight (on the Down Syndrome chart). 

Dental was our next visit.  Josiah didn't mind this at all.  The dentist rubbed Josiah's gums and checked his mouth.  There are no signs of teeth yet.  Apparently, it is not uncommon to have NO teeth until age 1 (for children with DS). 

On to the laboratory for a blood test.  This was the worst part of the day - luckily the 'bad' only lasted for a few moments.  Josiah handled it like a trooper.  They drew blood for the purpose of testing his thyroid.  During the day, I was reminded that his newborn thyroid test came back normal; they assume this will too.

We left the hospital and walked one block away.  We headed to the third floor.  The elevator doors opened and we immediately noticed the large mural of sesame street/big bird on the wall.  It was a welcoming place.  This was the audiology clinic where Josiah would get his 6-month hearing check up.  After a short wait, we were called in.  Unfortunately, the test was aborted due to Josiah having fluid in both ears.  We will return in a month or so, to have his hearing checked again.  We'll follow up with the pediatrician.

At 2pm, we were headed back to the car.  We made the 90 minute drive home (in moderate traffic).  The Clinic was incredible!  It was efficiently run, professional, welcoming, and worth every minute of our time.  The next clinic appointment is scheduled for January.  We are so fortunate that our son has these supports....we live in a great place, at a great time <3

Friday's Facts 060812: Feet

Children with Down Syndrome can experience a wide array of orthopedic issues.  This is due to their tendency for loose ligaments and hypotonia (decreased muscle tone).  This can include: scoliosis, joint dislocation, hop and knee cap instability, weak ankles and problems with the feet such as flat foot and 'metatarsus primus varus'.

FLAT FEET is seen in the majority of people with Down Syndrome.  Flat feet is a condition in which the arch of the foot 'collapses.'  Most flat feet do not cause pain or other problems.  In children, the diagnosis of flat foot is often not determined until the child reaches the age of 4-6. 

METATARSUS PRIMUS VARUS is also very common in people with Down Syndrome.  The condition is explained as the front part of the foot, behind the big toe, bends inward.  Most cases can be treated with orthotics.

ORTHOTICS:  There are two prominent types of orthotic shoes that are widely used for children with disabilities.  They are:

  • PIEDRO BOOTS are designed for children who need an extra arch or ankle support.
  • RICOSTA is a leading German brand of children's shoes.  They are made of high quality leather and have lightweight soles.

Additionally, people with Down Syndrome often have slightly shortened toes, small wide feet, and/or a slightly enlarged gap between the big and second toe (as shown here):

*pics obtained from the Internet *

It's amazing how one little extra chromosome, can alter something like a foot :)

Wednesday, June 6, 2012

Dreamnight at the Zoo 2012

This year, we learned of an event called "Dreamnight at the Zoo."  We heard about it from a local group we belong to - a group of families all of whom have children with Down Syndrome.  It seemed like a nice idea for our little group of families.  I had no idea the scope, or meaning, of the event.

Dreamnight at the Zoo is a global event which strives to offer an annual, cost-free, evening at the zoo, for chronically ill & disabled children and their families.  It is, ideally, held on the first Friday of June, from 6pm-10pm (times vary slightly).

Each zoo organizes the event its own way but in all the zoos children are welcomed, and treated like VIP's.

Rotterdam Zoo (Netherlands) initiated an evening "at the zoo," for children at the Sophia Children's Hospital, in 1996.  This first event, was specifically for children with cancer.  175 children were invited, and brought parents/siblings. 

In 2000, the Amsterdam Zoo joined their effort. 

In 2002, Denmark & Belgium joined. 

In 2003, France & Canada joined in the effort. 

2004 welcomed Holland, UK, Greece, Czech Republic, US, Columbia, New Zealand, Hungary, and Sweden.  In each Country, additional zoos joined.

2005 welcomed more zoos.  In addition, Dreamnight welcomed Poland, South Africa, Australia, Ireland, Japan, Mexico, Taiwan, and Scotland.

In 2006, Switzerland, Portugal, India and Israel joined the team.

The list just keeps right on growing.......
Last Friday, we were fortunate enough to have been included in this year's Dreamnight.  We packed up the boys and headed to the zoo.  Our Dreamnight was scheduled from 5:30pm-8:30pm.

Upon arrival, we noticed the sign:

"The zoo is closed to the public.  This evening's event is by invitation only."

As we walked through the front door, we were quickly greeted by smiling faces.  They asked our names & verified that we were on the VIP list.  Each child was given VIP passes to wear around their necks - they were nice too - laminated cards with a beautiful picture of an elephant on the front, the letters VIP, all on a nice lanyard.  We were handed an envelope with our name on it.

As we passed into the zoo, we stopped to peer into our mystery envelope.  Inside, we found tickets for a free teddy bear (for each child), popcorn, ice cream, and snack bar dinner (one per person).  The carousel and train (which usually cost extra) were free as well - unlimited rides.

Well, we had a blast!!!!  It was three hours of bliss.  Josiah is young so he couldn't really understand what we were doing, but he loved being out with family.  His older brothers were elated.  It was less hectic, as it was only families (public was excluded).  It was a great time!  We saw some of our friends there (from the group we belong to).  We enjoyed seeing the other kids from our group.

We can't wait for next year.  Josiah will be older - he will have a blast!

Here's a cute pic of Josiah, just enjoying his night out with family.

You can't see it in the picture, but we were just as happy as he was :)

For more information on Dreamnight at the Zoo, or it's history, please visit:

Steady Progress

Since Josiah's EI assessment, things have been moving steadily along.

Last week, Josiah met with D for physical therapy.  Once again, he was (apparently) out to impress.  D repeatedly put him on his tummy; he repeatedly tolerated it.  D was thrilled, again.  Josiah performs tummy tricks like a trooper.  He has started to utilize weight bearing in his arms, as shown here:

He is also starting to pull his legs under him.  These are two great steps towards crawling.

Although I don't have pictures yet, Josiah has started "side sitting."  He hates it, but is started to "feel" it.  I'll get some pics soon.

Josiah worked with K this week, if you can call it work.  For the first time ever, Josiah genuinely appeared to be 'lazy'.  He showed no interest in working.  It was hysterical!  He didn't want to roll over.  He didn't want to cooperate with tummy time.  He wanted no part of his session.  He was interested in casual play, feeding, and sleeping....too funny :)

I'm still waiting on the detailed notes from the assessment; I will post once available.

Meanwhile, I weighed Josiah yesterday.  It's only an estimate BUT he weighed in at approximately 13.6 lbs.  It's a definite weight gain.

Josiah will attend his first DS Clinic tomorrow.  We only have vague information regarding what will transpire there.  I'll look forward to telling you all about it.....

Tuesday, June 5, 2012

Friday's Facts 060112: A New Parent's Checklist

This is a great checklist I found for new parents of a child with Down Syndrome.  It was written for parents living in the Pennsylvania area but has been edited, here, for people living in the Massachusetts area.

Newborn checklist

1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).

2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.

3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.

4. Contact Early Intervention at 1-800-905-TIES or  EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age.  EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or
          SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs.  Families with low to moderate income and limited resources may be eligible for SSI.  Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth.  Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.

6. Take a copy of the following to your pediatrician:
          1. The Down Syndrome Health care Guidelines (available at
          2. Contact info for the DS Clinic at BCH or MG
          3. Growth charts for children with Down Syndrome (available at

3-month checklist

1. Schedule an echocardiogram with a pediatric cardiologist.
          Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
          All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
          The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
          Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
          All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
          Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
          All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.