New Tricks

Apparently, Josiah was listening to K and I on Monday.  We joked that Josiah would soon be rolling over from back to side.  We also predicted that, when it happened, he would pull both knees up to his chest and simply "fall" to the side.  Tuesday morning, as if to say he had been listening, he proved the prediction true.  He was playing in his playpen.  He lifted both legs into the air, pulled his knees up to his chest, and rolled to his right side.  As I tried to take a picture, he rolled onto his back (lol).  He did this repeatedly.  Now he seems to do so on purpose.  He seems amused by his new accomplishment.  I know we are.  What a great milestone he has reached.

Today, while sitting on my lap, he actually held his own head up for about 3 seconds.  He did so several times.  I know we still have a ways to go for him to gain full head control but, hey, it's a start.  He also laughed today.  It was a real laugh and it was the most precious sound in the world. 

Just when I thought he was falling into a predictable feeding schedule, he proved me wrong.  Last night, he went to bed at midnight.  Much to my despair, he woke up at 3:10am and didn't go back to sleep until 5:50am.  Today, he decided to "graze" as opposed to stick to his every-three-hour feedings.  I am sleep deprived and drained.  To make matters worse, I have a horrible cold.  I know it will all fall back into place.  In the meanwhile, I am just hoping for a solid five hours of sleep tonight :)

Playgroup was scheduled for tomorrow morning, but we're going to bypass it this week.  James and I are both battling a bad cold/cough and I certainly don't want to spread our germs around.  Hopefully I'll feel less wiped-out tomorrow and can accomplish something at home.

Friday, we will return to the cardiologist for Josiah's check up.  It's been five weeks since his open-heart surgery.  I'm praying all is well.....we have every reason to believe that it is.  I'm anxious to see his weight.  I'm keeping my fingers crossed that we'll start to see substantial weight gain soon.

Until tomorrow my friends.....

Monday's EI Visit

We like Mondays.  K comes (from EI) to work with both boys.

James was very happy to see K as she was on vacation last week.  He adores her.  They played with puzzles, play dough, and a multitude of other toys.  James only qualified for EI for expressive speech.  He is definitely talking up a storm but the clarity of words isn't there yet.  James truly loves his time with K.  She is usually greeted with a huge smile and laughter.  What more could you ask for?

K came back later in the day to work with Josiah.  Josiah was happy to see her.  He was more than happy to demonstrate his new tricks for her (as he did with D last week).  He continues to raise both arms straight up the air.  He continues to lift both legs and pull them towards his chest.  He enjoys a tripod toy which he clearly demonstrates his understanding of cause-and-effect.  He kicks a green bar which turns on the motion-activated music.  When the song ends, he becomes disgruntled, lifts his legs up, and kicks the green bar again.  He repeated this numerous times for K.  He is doing it deliberately....it's not just coincidence.  We are very excited.  Josiah tolerated side-lying very well.  He even tolerated increased belly time.  He made several good attempts to lift his head; his muscles just aren't strong enough yet.  We are all pleased with the progress he's making.

Jesse continues to do well in preschool.  He returned to school today, after enjoying February vacation last week.  I think he was pleased to be back with his friends.

Josiah has been great about sleeping in his crib.  I have been afforded the opportunity to sleep in my own bed since last week's transition back to normalcy.  It's been wonderful.  Much to my pleasure, Josiah seems to falling into his own schedule now.  He usually wakes around 5am for a feeding.  His feedings are becoming more predictable.  Every three hours seems to work for him now.  I am thrilled.  The variable 1-3 hours was becoming very draining.  I like the every three hour deal.  Josiah generally falls asleep around 12am and I am able to get a solid five hours before starting the schedule over again.

I'm feeling more productive these days.  The predictable feeding schedule has certainly helped.  Today, I did 7 loads of laundry, changed the kids beds, did some general pick up, and still had time for playing with the kids.  Everything is falling back into place. 

I am thankful.

A Great EI PT Visit & Synagis Shot

Josiah had his monthly EI PT visit on Thursday morning.  He had been changed, fed, and was ready for action.  D arrived as scheduled and Josiah seemed pleased to see her.  He was very content to be placed on his activity mat.  D received lots of smiles.  Josiah was happy to show off his new tricks.  Almost as if on cue, Josiah raised his hands in the air, grasped rings with his hands (and held on tight).  He was content to be rocked from side to side.  He demonstrated how easily he can raise both legs in the air and bring his knees to his tummy.  Then came belly time.  For a short time, he seemed amused.  He watched a toy, even reaching for it numerous times.  With assistance, he grasped the toy and held it tightly between two fingers.  He still has very low muscle tone in his neck, which seems to frustrate him.  After about 10 minutes on his belly, he decided to had had enough.  It took Mom (me) to console him, then he nursed and fell sound asleep (snoring lol).

D seemed pleased with his progress since her last visit.  We are too.

Friday morning, Josiah had his next scheduled Synagis shot.  He weighed in at 9lbs 3oz.  I was a little disappointed as he only gained 3oz in 10 days.  However, the cardiologist warned that the weight gain would not be instantaneous.  He assured us it will happen.  The pediatrician wants us to supplement with bottles.  We do try from time to time but Josiah hates bottles.  We'll keep up the effort.  Here's hoping to a better weight gain next time.

This morning (Saturday), James woke with a fever (101.5) and an unmistakable cold.  Jesse has had 'sniffles' for about two weeks.  Jesse, too, woke with a slight fever (100).  They both responded well to Tylenol.  James took his usual nap but unfortunately woke with a higher fever (102.5).  Jesse's was still 100.  Two more doses of Tylenol seems to have cured Jesse.  James went to bed with a fever of 101.  I'm suspicious that James could have an ear infection.  I'm just wondering if the trip to the pediatrician will be on Sunday morning, or if it will wait until Monday.  I'll see how James is in the morning.  Family is coming over tomorrow (Sunday) so I'm hoping they will sleep well tonight and awake without fever.

Beyond that, we celebrated my brother's birthday and Carl's birthday this week.  And, my friend has been visiting from Ireland.  Her little boy is suspected to have autism.  My heart truly goes out to her.

Hello bed :)

When we brought Josiah home from the hospital, we put him in his own crib on the very first night.  He only lasted there about an hour.  Being a newborn, he was up and down a lot that night.  Not wanting to keep Carl up all night, I slept on the upstairs couch; Josiah slept in the portable crib in the living room (next to me).  Those sleeping arrangements continued.  First, I didn't want Carl's sleep to be interrupted (as he had just recently had major surgery).  Second, I feared I would sleep too soundly in my own bed and not hear Josiah if he woke.  Lastly, I knew I could remain more alert during nighttime feedings if I were upstairs.  We had every intention of moving him back to his crib within a reasonable timeframe. 

In December, when he became sick with bronchiolitis, we obtained a moderate sized humidifier.  It was perfect for the living room; it wasn't very portable.  I wanted to sleep nearby, just in case Josiah needed me.  So, the sleeping room arrangements continued.  Then, in January, we faced open-heart surgery.  I was more concerned with Josiah (and his heart).....so nothing changed.  After surgery, the same justifications continued. 

Yesterday, I decided it was time to make the changeover.  Today marks the four week anniversary of Josiah's open-heart surgery.  He is breathing easy.  He is eating well.  He seems to be thriving.  During the day, yesterday, I put Josiah in his crib for a nap.  He successfully slept there for almost one hour.  Last night, I waited until after the last feeding.  He fell asleep in my arms and I carried him to his own room.  He slept in his crib from 1:30am until 6:50am.  For the first time since his birth, I had a full night sleep in my own bed.  It was great to sleep in my own bed.  It was great to sleep with my husband by my side.  It's another simple pleasure in life so often taken for granted.

Today, I am grateful for the little things in life :)

February Vacation

It's been a very relaxing few days.  Jesse has the week off from preschool.  I think we are enjoying February vacation as much as he is.  The two trips back/forth to his school are eliminated for the week - it's been a nice change.  James's playgroup is cancelled for the same; one less commitment we need to worry about this week.  Admittedly, I really missed the EI worker (whom I'll call K) coming to the house this week.  James and Josiah both enjoy their time with her each week.  I think we all miss her, when she doesn't come out. 

Tomorrow is another lazy day at home.  I'm looking forward to it.  On Thursday, EI PT (whom I'll call D) is coming to work with Josiah.  I'm can't wait for her to come out this week.  I think she'll be surprised with the change in him.  I know we are.  Prior to surgery, Josiah slept a lot.  He ate every 4 hours; at night, I would have to wake him after 7 hrs to eat.  He would primarily lay on his back with arms outstretched beside him.  Since surgery, he is awake and alert most of the day.  He eats every 1.5-3 hrs.  Fortunately at night, he generally sleeps for one 5-6 hr stretch, allowing me to catch up a little bit on sleep.  For me, it's like having a newborn all over again (in terms of eating).  I swear he's grown in length in the past two weeks.  He is constantly moving his arms and legs now.  It's exciting to watch the strides he's made in the past few weeks.  His muscle tone is still very low in his neck and trunk.  He cannot hold his head up yet but I know that will come with time.  Tomorrow will be four weeks since his open-heart surgery.  I remain in awe of my little heart hero.

On Friday, we return to the pediatrician for Josiah's synagis shot.  He'll have a weight check that day.  I am nervous that he hasn't gained much weight in the past two weeks despite his constant eating.  I have to keep reminding myself that he only had open-heart surgery four weeks ago; the weight gain may not be instant.  Also, he gained 11 ounces in the first two weeks after surgery.  I believe he's grown in inches and he's constantly moving.  This may explain where some of the calories are going.  I guess it's just a wait-and-see thing now.

Friday is also Carl's birthday.  We celebrated with my family last weekend.  We will celebrate with Carl's family this weekend.  Then, Monday, we'll be back to our normal routine. 

In the meanwhile, I will continue to enjoy the week - mostly commitment free.  There's nothing more I enjoy than spending time with my husband and three beautiful boys.

A Hot Topic: Down Syndrome in the News

"HHS mandate"

Source:
https://docs.google.com/document/pub?id=1w48IMDEXH4w-ZWW802xAaqiYJQ-NvuL-4UegPg1_YIE

The recently finalized Health and Human Services (HHS) regulations will mandate that private insurers provide no-cost prenatal genetic testing for all expectant mothers.  Down Syndrome advocates are calling for the mandate to be rescinded.  Here's why.

The mandate is included in the Patient Protection and Affordable Care Act's (PPACA) requirement for no-cost preventative care services for women.  To include this mandate under "preventative care" implies that Down Syndrome can be prevented (which it cannot).  It also seems to imply that it SHOULD be prevented. 

As written now, the HHS only requires no-cost testing.  It does not, however, require no-cost supports, etc so that an expectant mother may make a more informed decision based on the findings of the prenatal testing.

Also of note: Mammograms are not included in the mandate, and mammograms would prevent cancer deaths.

Another important note: The screening for DS is funded by the government in the HHS mandate. 

"The Value of Prevention"

Source: http://www.businessgrouphealth.org/benefitstopics/topics/purchasers/condition_specific/evidencestatements/neuraltubecefects_es.pdf

It is reported that the life-time cost for all cases of Down Syndrome (in 1992) exceeded 1.8 billion dollars.  This includes incremental medical, developmental, and special education costs as well as "lost productivity and earnings due to disability and death."

"The economic benefit of prenatal screening is defined as the averted cost from preventing the birth of a child with a chromosomal abnormality."

IDSC

Source:

https://www.facebook.com/profile.php?id=1649516049#!/IDSCforLIFE

The International Down Syndrome Coalition (IDSC) for Life has two major concerns with current health care mandate . The first concern is for the child who is in the womb, and is diagnosed with Down syndrome. Currently, the termination rate for children who are diagnosed in utero is reported to be near 90 percent in America. The International Down Syndrome Coalition for Life is concerned that the current health care bill will encourage families to abort the life of a child who happens to have Down syndrome, in the name of cost effectiveness.

“Will there be a panel that will decide that the price savings of terminating the pregnancy outweighs the dignity and value of the life of a child? Will it then become a patriotic responsibility to end a life that others deem less than perfect? Will there be measures written into the reform that protect the life of a child diagnosed prenatally with special needs?

“Since the goal of the healthcare reform bill as it is written is to help save the nation money, the IDSC for Life believes these are vital concerns which must be addressed.

“Our second major concern pertains to the individuals with Down syndrome who have been born. Currently, these people are given therapies and life-saving surgeries to help enhance the quality of their lives. Under HR 3200, can we be sure that this will continue? Will their medical concerns be treated equally with individuals who do not have Down syndrome? The IDSC for life is very concerned that our children, grandchildren, sisters, brothers and friends will not be given equal access to health care, because of their diagnosis. We believe that each individual deserves medical care that is needed to ensure that they can live full and happy lives. We cannot help but wonder if this health care reform act will actually lower the quality of care that our loved ones require.

“The IDSC for Life would like to see provisions in any health care reform bill which will ensure the protection of the lives of individuals with disabilities. We believe those provisions must be written into any health care reform to protect those in the womb, and those who are already born.”

TIME MAGAZINE Article regarding Down Syndrome

Last night, I paid for a subscription to TIME MAGAZINE so I could read the article contained therein.  The article is entitled "Early Decision."  It was written by Bonnie Rochman.  As to not infringe on copyrighted material, I have summarized the article briefly here.

"Early Decision" chronicles a 40 yr old woman who makes the decision to have amniocentesis to determine whether or not her unborn child has Down Syndrome.  Like Carl and I, her age brought the statistical likelihood to 1:100.  Additional factors increased the probability to 1:5 for her, 1:3 for us.  Within a few days, she received the news (as did we).  The unborn child has Trisomy 21.

The article describes how, upon learning the news, she left her half-full grocery cart, returned home, pulled down the shades, crawled into bed, and wept.  It was a little different for us.  The day we had the amnio, I did come home and take a nap.  I was stressed.  The test has made me nervous.  I just desperately needed rest.  By the time we received the confirmation call, Carl & I were relieved.  There were so many other chromosomal abnormalities that it could have been; Down Syndrome was the least of them. 

The article goes on to say that 1 in every 691 babies born in the U.S. has DS.  400,000 people in the country have DS.  It suggests the number would be higher if not for prenatal tests.  Pregnancies, where an early prenatal diagnosis of DS is determined, 90% result in abortion.  Will a new test increase that number?

New breakthroughs in prenatal technology (blood tests for DS and other chromosomal disorders) are in the works.  One, called Sequenom, can be administered as early as 10 weeks gestation.  Current tests, generally, are not carried out until at least week 15.  Current tests also carry a small risk of miscarriage; a blood test would not.  This new blood test accurately identifies 98.6% of DS pregnancies.  Some are calling it a "major step for prenatal diagnosis."

The concern is this: New prenatal screening may continue to reduce the size of the DS population.  50% of all babies born with DS have congenital heart defects.  Although new surgical techniques have made repair relatively routine, will policy makers decide that 'eradicating' the 'problem' is more cost effective?  Will earlier screenings lead to an increased number of terminated pregnancies?  "Now is the time to have kids with Down syndrome," says Amy Julia Becker, author of A Good and Perfect Gift, about life with her daughter Penny, 6, who has Down syndrome. "It is ironic that [earlier screening] is happening at a time when it's easier to have Down syndrome than ever before."

The new screening means that parents will no longer have to wait for a second-trimester ultrasound to learn the sex of their child; "early blood tests can now reveal that and much more. A single new genetic test can screen for nearly 600 mutations. If it's O.K. to eliminate people with Down syndrome, is it also O.K. to end a pregnancy in which the fetus has a terminal diagnosis like Tay-Sachs disease? How about a cleft palate, which can be surgically corrected? And what about deciding the fate of a baby who has a breast-cancer gene? Selective abortion of female fetuses in China and India is chillingly commonplace. And putting aside the existential debate over abortion, what does it mean for a society to weed out children with Down syndrome or any of the other less than perfect among us?"

Carl and I were happy to receive the early diagnosis.  One, done 8 weeks sooner, would not have changed our course.  We were going to welcome Josiah into our family, regardless of DS.  The early diagnosis allowed us extra time to prepare mentally, research, and prepare to put services into place.  How many other women will make a different choice based on an earlier screening?  That seems to be the concern.

According to the article, parents and professionals are afraid that more terminations may lead to a reduction of services for babies with Down syndrome.  The gains of the past 40 yrs may be lost.  Children with DS may return to institutions, and not be mainstreamed as they are now.  "That would be bad under any circumstances, but it would be particularly cruel if it happened now, just at the point that the achievements--and the acceptance--of people with Down syndrome have been soaring."