Wednesday, February 29, 2012

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, February 27, 2012

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'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.

Sunday, February 26, 2012

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.

Wednesday, February 22, 2012

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) 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.

Monday, February 20, 2012

A Hot Topic: Down Syndrome in the News

"HHS mandate"


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"


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."



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.”

Sunday, February 19, 2012

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.

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."

Wednesday, February 15, 2012

Valentine's Day, "The Mayonnaise Jar & Two Cups of Coffee"

One year ago, on Valentine's Day, we discovered that I was carrying our third child.  The follow weeks and months would reveal a boy (whom we named Josiah).  A diagnosis of Down Syndrome would make itself evident.  We would fear a VSD and be relieved by it's (supposed) closure.  Nine months would bless us with the beautiful child that is Josiah.

Being Valentine's Day, I take certain care to be thankful for that which we have been blessed.  A friend posted the following on FB yesterday.  I thought it was a great reminder on Valentine's Day <3.

When things in your life seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar... and the coffee...

A professor stood before his philosophy class and had some items in front of him.  When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls.  He then asked the students if the jar was full.  They agreed that it was.

So the professor then picked up a box of pebbles and poured them into the jar.  He shook the jar lightly.  The pebbles rolled into the open areas between the golf balls.  He then asked the students again if the jar was full.  They agreed it was.

The professor next picked up a box of sand and poured it into the jar.  Of course, the sand filled up everything else.  He asked once more if the jar was full.  The students responded with a unanimous "yes."

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand.  The students laughed.

"Now," said the professor, as the laughter subsided, " I want you to recognize that this jar represents your life.  The golf balls are the important things-your God, family, your children, your health, your friends, and your favorite passions-things that if everything else was lost and only they remained, your life would still be full.  The pebbles are the other things that matter like your job, your house, and your car.  The sand is everything else-the small stuff." 

"If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls.  The same goes for life.  If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you.  Pay attention to the things that are critical to your happiness.  Play with your children.  Take time to get medical checkups.  Take your partner out to dinner.  Play another 18.  There will always be time to clean the house and fix the disposal.  Take care of the golf balls first, the things that really matter.  Set your priorities.  The rest is just sand."

One of the students raised her hand and inquired what the coffee represented.
The professor smiled.  "I'm glad you asked.  It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend."

Author Unknown

Happy Valentine's Day, my friends :)

Tuesday, February 14, 2012

What's in a Nickname?

During our recent hospital stay, I was having a conversation with a nurse on the medical unit where Josiah was being treated.  She was a wonderful nurse & Josiah liked her very much, as did I.  We were chuckling over Josiah's hair (it's wispy and tends to stick straight up - much like a mohawk).  She was commenting that a lot of children with Down Syndrome seem to sport a similar hairdo.  During this conversation, she admitted that the staff tends to call these kids "Doodles."  At face value, I thought 'that's kind of cute.'  Perhaps I should have left it at that.

When I returned home, I thought of that nickname and decided to look up the word "doodle."  I know it means to scribble, etc.  However, I wanted to research the word further.  Here's what I found: defines the noun as being "A figure, design, or scribble drawn or written absent-mindedly.  The informal noun means "fool or simpleton" from the German dudeltopf. defines the etymology as this: "The word doodle first appeared in the early 17th century to mean a fool or simpleton." defines the noun as "a minor work."

Perhaps, their nickname for DS kids is innocent.  This nurse readily admitted she knew not why they called the kids 'doodles.'  Perhaps the nickname has been used for decades and the newer/younger nurses have never made the effort to determine it's meaning or origin.

I'm not usually a person that focuses on "political correctness" and the like.  I certainly don't care what nicknames people use.

However, I think this is much different.  Here we have professionals using a nickname to define our children.  If the professionals use such a nickname, doesn't it merely fuel the fires of the ignorant?  90% of all DS pregnancies (that receive an early pre-natal diagnosis) result in abortion.  I firmly believe in a woman's right to choose.  However, if some of these abortions occur due to ignorance and misperception, isn't it possible that the professionals (whether they mean to or not) are contributing to societies fear and misperception of Down Syndrome?  I think it does.

Before the general public can ever change it's negative attitude about Down Syndrome, DS kids, and the parents that have chosen to give them life, I believe that nicknames like "Doodles" need to stop being used.

It's just my thought....

Monday, February 13, 2012

A Great EI Visit

Josiah met with EI today.  His regular worker came out with our new EI RN.  Josiah responded well and transitioned nicely.  He tolerated positioning and his new friend (RN) nicely.  He smiled for his old friend :)  His strength and determination is becoming quite evident.  He seemed to want to show off his new skills for his friends.

While laying on his back, Josiah showed how nicely he can raise his arms into the air now.  He even brought both hands together over his chest.  He grasped a small ring and brought it up to the side of his head.  He examined it carefully with his eyes.  We thought he might bring the ring to his mouth, but it didn't happen.  I expect that will happen soon.

Josiah tolerated lying on his right side very well.  He grasped his hands together and showed how nicely he could roll from his side to his back, without assistance.  The DS developmental chart states 5 months as the typical age for this he's 1 month ahead.  That's great :)

For the first time since surgery, Josiah had some belly time.  He tolerated it well.  He didn't seem to make any effort to raise his head, but he hasn't had belly time for almost 3 weeks.  We have to limit belly time because of his sternum (ie breastbone) which was broken for his open-heart surgery.  We've been told his sternum will heal completely within 6 weeks of surgery; we are almost half-way there.  In the meanwhile, we have started with 5 minutes of belly time and can expand the time in small increments - as tolerated. 

Next week, EI PT returns for a visit.  I think she will be impressed with how far he's come since her last visit.  I'm excited for that visit.

Tomorrow is Valentine's Day and I am excited to spend it with my four boys (hubby included :)  Every day is a new adventure and every minute a blessing <3

Sunday, February 12, 2012

4 Months Old

It's been a great weekend.  Last night, we had the opportunity to see a dear friend of mine.  The boys finally met their "Auntie Natalie."  They fell in love with her; the feeling seemed mutual.  The older boys mentioned her quite a few times today.  Jesse wants to visit her in N.Y. 

Today, my parents visited.  They just returned from a two-week vacation.  The boys were very excited.  They waited at the window as the time approached; they waved, knocked, and blew kisses when my parents pulled in the driveway.  They do so love their grand-parents.  This afternoon, we accomplished numerous errands and made it home just before dark.

For the first time ever, Jesse's homework (he's in preschool) took 2.5 hours.  It's amazing to me that preschool homework can be so time consuming.  On a positive (even if time-consuming) note, he's now learning to write his name.  It's a huge milestone.  Jesse has an appointment next month to formally register for kindergarten - I'm not sure where those 5 yrs went lol.  The kindergarten registration packet arrived yesterday.  We'll fill that out and bring it to the appt.  He'll have his eyes/ears checked there - then it will be official.  I can't believe he'll be off to K in September.

James is two and exemplifies "terrible two."  He's sweet, lovable, sociable, and funny...but oh-my-goodness, he can be maddening!!! 

Josiah has had a great weekend.  He's eating really well.  I'm able to sleep, generally, 5 hours at night before he needs to eat again.  So, I'm tired but adjusting well.  I can tell he is more comfortable.  He's breathing easy and full of smiles these days.  He's four months old today.  I'm so proud of this amazing little boy <3.

Tomorrow, EI comes to work with him.  We'll meet the EI RN tomorrow, as well.  We're fortunate to have this amazing team working with our son, who are constantly cheering him (and us) on.  I'm hoping to give him a few minutes of belly time tomorrow.  I hope he can tolerate it.  We're 17 days out of surgery, so I'm hoping his comfort level will allow it.  The faster he can return to belly time, the faster he can start to gain strength in his neck (he still needs full support of his neck/head).

I've been reviewing the great DS developmental chart to get a feel for where he stands right now.  By the age of four months, according to the chart, DS kids:
  • smile when touched and talked to (yes!)
  • smiles spontaneously (yes!)
  • recognizes mother/father (yes!)
  • follows object with eyes, in circle (haven't tried that yet - will mention to EI worker)
  • reacts to sounds (yes!)
  • vocalises to smile and talk (yes!)
Ok, good!  Aside from not trying the 'follows object with eyes, in circle' - he's doing all of the above.  That's great! 

We don't have a lot planned this week and, for that, I am grateful.  Of course, I'm forever trying to accomplish other projects.  They will all be completed.....I simply refuse to stress out about it.  Meanwhile, tomorrow is Monday and our amazing adventure continues......

Saturday, February 11, 2012

Thursday's Follow-up Appt

We took Josiah back to the pediatrician on Thursday.  Josiah is doing incredibly well.  We were greeted by hugs from our favorite nurse and big smiles from the MD.  Josiah weighed a mere 8 lbs 5 oz, last Thursday (one week prior).  Amazingly, he weighed 9 lbs during the follow-up visit.  The MD was thrilled!!! (as were we).  It is well-known that children with DS are slow weight gainers, and Josiah has been no exception to this rule.  Add several heart defects, open-heart surgery, and Lasix, and weight loss becomes a given (as was the case w/ Josiah - dropping from 9.3 (at his heaviest) to 8.5 (last week).  BUT, it looks like the tide is changing - we are delighted.  Josiah is finally gaining weight.  On the "normal" chart, his weight currently places him in the 0% (yes, you read that right - the 0th percentile for children his age).  On the DS growth chart, he fairs better - he's falls slightly below the 10th percentile for weight).  We have turned a corner :)

Josiah received 2 vaccinations and we were given an updated synagis shot date.  Jesse got his five-year check up, and passed with flying colors.  He's gained 6 lbs this year and grew 3 inches.  The pediatrician tells us he will be 5.9/5.10 as an adult - just like his uncles.  All the while, James sat in the office and cried - he was quite dramatic, given that he wasn't being seen today.  Once the other boys had been examined, and everyone had their jackets back on, James was then willing to blow a kiss to the MD - it was so funny <3.

When I got home, I called my lactation specialist, KF.  She has been an incredible support.  I started working with her at the end of my pregnancy with James.  Breastfeeding didn't work out so well with Jesse, and I was determined to make it work with the next one :)   KF and I spoke frequently until James's first birthday.  I reconnected with her during my pregnancy with Josiah, and I am so thankful that I did.  Given everything that's happened with Josiah, it's been a real blessing to have her support.  Without it, I don't know that I would have continued to breastfeed Josiah - it's very frustrating to feed a baby that seemingly doesn't gain weight for weeks/months at a time.  Her never-ending support has allowed me to 'stick with it,' and I am so glad that I did.  She has never let me lose faith in myself or my ability to nourish my child.  She is amazing.

Today has been a quiet day at home.  Tomorrow, we are going to see a dear friend of mine (assuming the snow doesn't foul our plans).  Sunday, We'll likely see my folks who have been away for a couple of weeks.  Monday, Josiah meets with early intervention again.  But, I don't want to get too far ahead of myself.  I'm enjoying being in the moment.

When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown

The greatest oak was once a little nut who held its ground.  ~Author Unknown


Tuesday, February 7, 2012

A Peaceful Few Days

It's been nice enjoying the last few days at home with our beautiful boys.  It's been quiet and drama free (at last :).

Yesterday, the EI worker came back out to work with Josiah.  She's limited as to what she can work on due to Josiah's recent surgery.  However, she has noted his legs are gaining strength.  He is grasping objects and lifting his arms into the arm (from elbow to fingertips).  He's lifting both legs off the ground and pointing them toward the ceiling.  These are all things he wasn't doing before.  Next week, the EI RN will be coming out to meet him.  Later in the month, EI PT returns.

When the EI worker was here a week ago, we were discussing developmental milestones as they relate to Down Syndrome.  Neither of us were happy with the general milestone chart that we had.  So, I went on a quick Internet quest and located one that is delightful!!!!  This gives a comprehensive list of development milestones and when a person, with Down Syndrome, may successfully reach each one:

ACTIVITY Children with Down syndromeTypically developing children

Average ageRangeAverage ageRange
Balances head and holds it steady when swayed5m3m to 8.5m
Rolls from side to back5m3m to 9m
Rolls from stomach to back6m5m to 12m
Supports body on arms, lifts head and chest when lying on stomach6m3m to 10m
Reaches one arm forward when lying on stomach6m5m to 10m
Sits with support7m5m to 9m
Hand to foot play7m4m to 10m
Rolls from back to stomach7m5m to 9m
Rolls over 8m4m to 12m5m2m to 10m
Moves around his/her own axis while sitting on floor8m5m to 13m
Sits while supported by own arms8m5m to 15m
Sits in high chair9m6m to 15m
Sits without support for one minute or more9m6m to 16m7m5m to 9m
Crawls14m9m to 19m
Sits steadily for 10 minutes or more and is well balanced11m8.5m to 15.5m
Changes from sitting to standing position 13m8m to 17m
Crawls with stomach lifted from the floor 14m10m to 20m
Pulls to stand using furniture15m8m to 26m8m7m to 12m
Walks with support16m6m to 30m10m7m to 12m
Stands alone18m12m to 38m11m9m to 16m
Climbs up a flight of stairs20m12m to 28m
Walks 10 feet with a push toy22m16m to 30m
Walks alone23m13m to 48m12m 9m to 17m
Walks up stairs with help30m20m to 48m17m12m to 24m
Walks downstairs with help36m24m to 60m+17m13m to 24m
Runsaround 4 years
Walks up stairs holding the rail alternating feet56m(40m to 66m)
Jumps on the spot4 to 5 years
Rides a tricycle 15 feet61m(50m to 72m)
Walks down stairs holding the rail alternating feet 81m (21m)(60m to 96m)

ACTIVITYChildren with Down syndromeTypically developing children
Average ageRangeAverage ageRange
Smiles when touched and talked to2m1.5 to 4m1m1m to 2m
Smiles spontaneously3m2m to 6m2m1.5m to 5m
Recognises mother/father 3.5m3m to 6m2m1m to 5m
Approaches image in mirror 6.5m4m to 10m
Takes solids well8m5m to 18m7m4m to 12m
Feeds self with biscuit10m6m to 14m5m4m to 10m
Plays pat-a-cake, peek-a-boo games11m9m to 16m8m5m to 13m
Holds up arms and legs when getting dressed and undressed15m12m to 20m
Drinks from a cup20m12m to 30m12m9m to 17m
Uses spoon or fork20m12m to 36m13m8m to 20m
Urine control during the day36m18m to 50m+24m14m to 36m
Plays social/interacting games3.5 to 4.5 years
Bowel control36m20m to 60m+24m16m to 48m
Dresses self partially (not buttons/laces)4 to 5 years
Uses toilet or potty without help (using a special step)4 to 5 years
ACTIVITYChildren with Down syndromeTypically developing children
Average ageRangeAverage ageRange
Follows object with eyes, in circle3m1.5m to 6m1.5m1m to 3m
Grasps dangling ring6m4m to 11m4m2m to 6m
Removes towel from eyes (during play)8m5m to 13m
Looks for an object which disappears out of view8m5m to 13m
Lets go of one object in order to pick up another8m5m to 11m
Passes object from hand to hand8m6m to 12m5.5m4m to 8m
Imitates movements11m8 to 17m
Shakes rattle to make a sound11m8 to 17m
Pulls string to attain toy11.5m7m to 17m7m5m to 10m
Picks up object from a box12m9m to 17m
Finds objects hidden under cloth13m9m to 21m8m 6m to 12m
Uses index finger to explore objects13m8m to 22m
Claps hands13m9m to 18m
Opens box to find a toy14m 11m to 17m
Rolls/catches ball14m10m to 19m
Makes marks on paper with crayon14m10m to 27m
Attempts to imitate a scribble15.5m10m to 21m
Puts cube in cup16.5m 10m to 24m
Puts 3 or more objects into cup or box19m12m to 34m12m9m to 18m
Picks up an object size of a currant using thumb and forefinger only20m12m to 36m
Builds a tower of two 1'' cubes20m14m to 32m 14m 10m to 19m
Puts a peg in pegboard two or more times 23m17m to 36m
ACTIVITY Children with Down syndromeTypically developing children
Average ageRangeAverage ageRange
Reacts to sounds1m0.5m to 1.5m0 to 1m
Vocalises to smile and talk4m1.5m to 8.5m
Shows satisfaction in social interaction6m5m to 9m
Gains attention by making sound variations (not crying)7m5m to 12m
Turns to sound of voice6m3m to 8m4m2m to 6m
Reacts appropriately to signal gestures (come up, look)8m6m to 13m
Say da-da, ma-ma11m7m to 18m8m 5m to 14m
Performative communication11m8m to 18m
Imitates sound 11m 7m to 18m
Responds to familiar words13m10m to 18m8m 5m to 14m
Responds to familiar words by gestures, etc.13.5m10m to 18m
Responds to 'no'14m11m to 24m
Responds to simple verbal instructions16m12m to 24m10m6m to 14m
Points when requested to 3 body parts (eye, nose, mouth)17m13m to 25m
Jabbers expressively 18m12m to 30m12m9m to 14m
Says first word(s)18m13m to 36m14m10m to 23m
Shows needs by gestures22m14m to 30m14.5m 11m to 19m
Says 2 words22m15.5m to 30m
A few two word sentences30m18m to 60m+
Uses words spontaneously and to communicate1.5 to 6 years
Next week, I think we'll try giving Josiah some belly time and see how he does.

Thursday, we bring him back to the pediatrician for his post-op follow-up/4 month visit/weight check.  I'm really curious about the weight.  We were able to stop the Lasix last Thursday, so that cannot contribute to weight loss anymore.  He has been eating like he never did before (my body is still trying to adjust to the increased feeds, including middle of the night ones :).  I hope to see the weight increase soon....

It's another mellow day at home.  I have so many in-home projects to complete.  I'll try to accomplish a few today.

Thursday, February 2, 2012

Today's Follow-up Appt at Children's

We kept Jesse home from preschool today and brought all three kids to playgroup.  Miss C. was happy to see the three boys.  Jesse was happy to participate in playgroup (which he usually misses due to preschool).  James jumped right back in like he was there yesterday (he's missed a couple of weeks).  Josiah was awake and a bit cranky due to not being fed since 8am (the cut-off time in preparation for today's follow-up tests).  A good time was had by all.  We left playgroup at 10:30 and made our way to Children's Hospital.

We arrived at the appropriate floor.  Carl took the two older boys upstairs to a children's playroom.  Josiah and I headed into the room for testing.  It was about 12:20pm.  Josiah's vitals were good.  Once again, his weight had dropped from 4.14k to 3.87k.  They tell me this is normal post-op.  Josiah's also been taking Lasix twice/daily, which is likely contributing to the weight loss.  The MD came in and examined Josiah and said he sounded really good.  Then, he was given the sedation (a liquid taken orally, which apparently tastes quite swill).  About 15 minutes later, Josiah was asleep.  It was 1pm.  They began the sedated echo cardiogram.

During the next 70 minutes, I watched quietly.  It was hard to discern what I was looking at.  There were lots of blues and reds on the screen.  It was difficult for me to tell if things looked good, or not.  The room was quiet and dark.  Few whispers were spoken between the technician and nurse; otherwise, it was my own thoughts idling away the time.  During those times, it's easy to imagine all the things that could be wrong, the bad news you may receive, the fears are there.  All the while, you hope for the best.

At about 2:20, they paged Josiah's cardiologist to let him know the echo cardiogram had been completed.  While they waited for his arrival, they were able to complete the EKG (Josiah was still asleep, so it was quick and easy).  The cardiologist arrived moments later, listened to Josiah's heart, and reviewed the results of the echo cardiogram.  He said, "We couldn't have asked for a better outcome."  Josiah is doing great!!!  There are no holes in his heart.  Nothing is leaking.  The pressure in the right side of the heart is near normal.  The size of the heart has already decreased.  The surgery was a complete success.  Part of me kept waiting for the "but," but it never came :).  Josiah will have a simple follow-up office visit in 1 month (no sedation, no testing, just a simple office visit).  They then removed the one suture Josiah had (from where the chest tube had been placed).  The site looks great; it's healing nicely.

Once awake, Josiah nursed for a short time then fell back to sleep.  I went to find Carl and the boys.  We made the appt for next month's follow-up, went downstairs for Josiah's chest x-ray, then made our way to the cafeteria for a late lunch/early dinner.  By the time we left the hospital, it was approximately 5:30pm.  The cardiologist had already left a message on my cell phone stating Josiah's chest x-ray came back perfect.  Josiah no longer needs the Lasix.  We are delighted.

It was a quiet ride home as our three beautiful boys slept all the way home.  Carl and I are tired.  We are relieved.  We are looking forward to the next few days, at home, with our three healthy children.

Recently, on facebook, a friend suggested that my brother Scott (who died in Sept) was watching over Josiah.  I like that idea.  Scott had his faults, here on earth.  However, Scott was drawn to those in need.  He enjoyed helping the downtrodden, even when he was one of them.  My brother would have loved his newest nephew.  Perhaps God knew that Josiah was going to need an angel.  Maybe that's why he brought Scott be Josiah's Guardian Angel <3

Wednesday, February 1, 2012

What a Difference a Week Makes

It's hard to believe what a difference a week makes.

One week ago, right now, we were sitting in a small conference room at Children's Hospital, speaking to our son's surgeon.  Josiah had been in the operating room since 8am.  The surgeon was about to go into the room to perform open-heart surgery on our little man.  The surgery was over at 11:40am and the surgeon came out to discuss the successful operation.  Josiah spent two days in ICU, then two days in the cardiac unit.  We came home on Sunday.

Josiah is stronger than ever.  He is feeding and sleeping well.  He continues to show some signs of discomfort which is readily eased by Tylenol.

His EI worker comes out today to work with him.  Tomorrow, we are off to Children's for his follow-up sedated echo cardiogram.  Next week, we have a follow-up at the pediatrician's office.

I am thankful for this past week and in awe of my son's strength and determination.

Josiah truly is my little hero.