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 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 http://www.massfamilyties.org.  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 http://www.masshealth.gov).
         
          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 http://www.ndss.org)
          2. Contact info for the DS Clinic at BCH or MG
          3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)

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.