Friday, May 25, 2012

Friday's Facts 052512: Interesting Tidbits

Down syndrome was named for John Langdon Down who, in 1866, described the syndrome in a paper entitled 'Observations on the Ethnic Classification of Idiots'. He classified Down syndrome as being the 'Mongolian type of idiot'.

John Langdon Down's terminology for Down syndrome is now said to have misleading connotations, as well as being an embarrassing term. The World Health Organisation officially dropped the term mongolism in 1965. However, it does still appear is some medical texts.

In 1959, Jérôme Lejeune discovered that an extra 21st chromosome causes Down syndrome.

There are many different variations of Down syndrome with Trisomy 21 accounting for around 95% of all recorded cases.

Of all recorded cases of Down syndrome, only around 4% are the result of translocation (when a segment of the 21st chromosome breaks off and attaches itself to another chromosome), which can take on several different forms. Before translocation occurred, the baby would have had the normal number of chromosomes.

Mosaic Down syndrome accounts for around 1 - 2% of all recorded cases. In this form, there is a chance that the individual will have less prominent physical features of Down syndrome.  In Trisomy 21, which is the most common form of Down syndrome, all of the cells within the body are affected by the additional chromosome. In mosaicism, there is a mixture of cells affected by trisomy 21 and cells with the normal number of chromosome. The name comes from the fact that, in mosaicism, the cells form a mosaic pattern within the body.

Although there are health problems which are associated with having Down syndrome, there are also health benefits. Having Down syndrome gives a reduced risk of developing many common malignancies. This does not, however, include leukaemia, which individuals are 15 - 30 times for likely to develop , and testicular cancer. It is unclear as to why the incidents of fatal cancers in reduced amongst individuals who have Down syndrome although it could be related to the tumour suppressor genes on the 21st chromosome. Another explanation could be that individuals with Down are not as exposed to the environmental factors which increase the risk of some cancers.

It is not possible to prevent the genetic abnormality which causes Down syndrome. However, it has become easier to identify babies who are at risk during pregnancy. Test which can indicate a risk of Down include, a triple screen which is offered at 15 - 20 weeks of detection, a quad screen which is also offered at 15 -20 weeks and a nuchal translucency test (measures the width of the spinal cord at the back of the baby's neck) which is offered between 10 - 13.5 weeks.  The test requires an ultrasound, which measures the amount of fluid at the back of the baby's neck; this tends to be higher in babies who have Down syndrome. Although it detects around 62% of all cases of Down syndrome, there is a small chance of a false positive being given. Therefore, an amniocentesis is needed to confirm a genetic abnormality. However, due to it being an invasive procedure, which involves taking amniotic fluid from the amniotic sac, it does come with a risk of miscarriage. An amniocentesis may also be used to diagnosis trisomy 18 (Edwards syndrome) and spina bifida.

Down syndrome affects people from all cultures and ethnic groups and, in many cases, is sporadic. This means that neither of the parents are affected by the disorder and that the chances of any other pregnancies resulting in a Down syndrome baby are slim. However, there are factors which can increase the risk.

Although the risk of an infant having Down syndrome does increase with age, most babies with the syndrome are born to younger parents. This is due to most people choosing to have their children at a young age. At the age of 20, a woman's chance of having an child with Down is about 1 in 1700. This increases to 1 - 900 at age 30, 1 in 100 at age 40 and 1 -35 at age 45. The age of the father may also have an effect of the likelihood of conceiving a child who has Down syndrome.

Individuals who have Down syndrome have a life expectancy of 50 - 60+ years of age, although this can be lessened if the individual has significant health problems. This has increased from 15 years in the 1950s. As the life expectancy of individuals with Down syndrome has increased, a link has emerged between it and another disorder. Individuals with Down syndrome have a 50% chance of developing dementia. 

EI Assessment 052412

Yesterday was Josiah's much-anticipated 6-month EI (early intervention) assessment/review.  K (childcare specialist) and I have been excited about today, expecting to see great improvement.  After all, we thought, he had so many obstacles in his first few months.  He had multiple VSD's and ASD's (that we didn't know about, at the time).  In Dec, he had RSV (a blessing after all - without it, they wouldn't have found the holes in his heart so quickly).  At the end of January, he had open heart surgery; Then, he had a six week recovery period.  So, really, he's only been ABLE to make improvements since early-March.

Josiah was up early, fed, changed, and ready to greet his 'girlfriends' upon their arrival at 8am :).  The mat was ready to go; Josiah was ready to play.  This was an unusual session and Josiah sensed that.  I think he was a bit disappointed, at first.  D (physical therapist) always greets Josiah with songs....that was not true yesterday.  Josiah missed it, I could tell lol. 

Josiah was engaging with both K & D.  K performed most of the 'tests', while D observed (and recorded) the results.  Josiah did well at rolling over, grasping toys, even reaching for toys (at times).  He wasn't impressed with tasks requiring him to tap, look at items, etc.  He was very vocal with his 'girls'.  He's a social little guy :)

Josiah did very well yesterday!  The 'results' indicate the "functional" age of the child (at what age the child is currently functioning at).  Here is the score summary (when I get the detailed report, I will post the specifics):

  • Gross Motor: 4 months (not surprising - this involves trunk, head, neck control, etc.  I'm tickled that he didn't score lower :)

  • Fine Motor: 5 months

  • Social/Emotional: 5 months

  • Receptive Language/Communication: 5 months

  • Self Care/Adaptive: 5 months

  • Expressive Language/Communication: 6 months

  • Cognition: 6 months

We are thrilled that he has made such great improvements in such a short period of time.  This little guy is amazing!!!!

Monday, May 21, 2012

The Single Palmer Crease

Have you ever looked at the palm of your hand?  Did you ever give any thought to it?

Most people have three strong lines (called palmar flexion creases) in the palms of their hands.  Palmar creases develop while a baby is in the womb (usually by week 12 gestation).

A Single Palmar Crease is a single line that runs across the palm of the hand; the horizontal creases join together to form a single one. 

This used to be called a 'Simian Crease' but that carried a negative connotation (as it refers to a monkey or ape).

Some Interesting Facts:

  • The Single Palmar Crease occurs in 1 out of 30 individuals. 

  • Males are twice as likely as females to have it. 

  • Single palmar creases usually indicates a problem with development.

  • The Single Palmar Crease is more prevalent in individuals with: hyperactivity (2-3x more), neuroticism, delinquent behavior, and schizophrenia.

  • About 45% of people with Down Syndrome have the Single Palmar Crease; Compare that to 1% of the general population.

Josiah is one of the 55% of children with Down Syndrome who does NOT have the Single Palmar Crease.

Famous People that have the Single Palmar Crease (or close variation):

Albert Einstein
Muhammad Ali
Tony Blair
Hillary Clinton
Robert DeNiro

This adventure is amazing....we learn something new every day :)

Saturday, May 19, 2012

Stone Soup 051912

James woke up Monday morning with little red bumps around his lips.  Last Friday, he had exhibited a brief fever (only 99/100).  Over the weekend, he had seemed "off" at times, but I thought nothing of it.  That is, until I saw the bumps.  Off to the MD before visiting Nana for the day.  "Probable' Coxsackie Disease - what a name!  Apparently, it's very common with young kids.  Of all the weird things, it's actually a respiratory infection.  So, "keep him away from Josiah as best you can."  These were the words to live by for a few days.  We skipped both play groups this week, just to keep his germs away from others.  Whatever it was, it seems to be gone.  Coxsackie is "extremely contagious" and no one else has caught it.  So, I'm not convinced of the diagnosis.  None-the-less, we are happy that he is ok.

Jesse, too, had an exciting week....full of milestones.  He officially graduated from preschool.  We all went to celebrate his accomplishment.  He was very proud, as were we :)  Today, we dropped him off at a friend's house.  It was his first birthday party/sleepover.  He was delighted and couldn't wait to leave the house.  By 9:30am, he was asking "Is it time to go yet?"  1:00pm couldn't come fast enough.  It's 11pm now and, by all accounts, he's doing well at his friend's house.  We cannot believe what a big boy he has become.  This summer, he attends kids college.  Then, it's off to Kindergarten <3

It's been a nice week & we still have one more weekend day to enjoy :)

A Great Session to End the Week

K (EI child specialist) came out to work with Josiah on Friday.  He was very happy to see her.  She and I discussed Josiah's recent sessions with C (the feeding specialist) and D (the PT).  We are both delighted with his progress, as is this great team!

Even though Josiah had rolled for C, and again for D, that wasn't enough (for him).  While working with K, Josiah decided to keep rolling over.  First, from back to tummy.  Then from tummy to back.  First rolling right.  Then rolling left.  He was non-stop for over an hour.  It was hysterical!!! 

In between rolls, K was able to get him to focus on a few other tasks :)

Here, Josiah has agreed to sit with K. He doesn't seem particularly impressed as he's been taken away from his rolling fun lol.  However, he willingly reaches for the colorful block and sucks on his thumb.

Next, he sits for K (with her support).  The flash has annoyed him & he is still being kept from his new found activity.  None-the-less, he gains more strength every time he practices his sitting.

Towards the end of the session, he tires.  Here, he has found his thumb (again), a restful position, and a very cute boy in the mirror.  "Hi Me :)"

We remain in awe at how far this little miracle has come, in such a short time.  A mere 75 minutes after the session started, it ends.  Josiah is time for time for moving to the crib.....

"I think I'll just sleep here."

Friday's Facts 051812: DS and Leukemia

Individuals with Down syndrome have a 15 to 20 times greater risk of developing leukemia.

The majority of cases are categorized as acute megakaryoblastic leukemia (AMkL), which tends to occur in the first three years of life; thankfully, there is a high cure rate.

A transient form of leukemia is also seen in newborns with Down syndrome, disappearing spontaneously during the first two to three months of life.

One in every 95 children with Down syndrome develops leukemia, compared with one in every 2000 children without Down syndrome.

It appears that the extra genetic material found on chromosome 21 also may cause stem cells to proliferate before they have developed to maturity, creating “blast cells,” and thus, leukemia.

Children with Down syndrome are usually diagnosed with one of the two major forms of leukemia -- ALL (acute lymphoblastic leukemia) and AML (acute myeloid leukemia) -- in about the same proportion as all other children.

Compared to most children with AML, children who also have Down syndrome respond to treatment better, and have survival rates as high as 85%, compared with 50-55% for the others.

     For children with Down syndrome, leukemia treatment is more successful than for other kids. It's likely due to a genetic mutation found only in Down syndrome children, new research shows. However, the same mutation also increases the kids' leukemia risk.

     Children's cancer researchers have consistently reported the pattern. A specific type of acute myeloid leukemia (AML) called acute megakaryocytic leukemia (AMkL) is the most common type of AML in young children with Down syndrome.

     Recent studies have identified a genetic mutation in virtually all Down syndrome children who have AMkL. Non-Down syndrome kids with AML don't have this mutation. The mutation, known as the 40-kDa GATA1 protein, may be responsible for the survival difference.

     The GATA1 mutation seems to contribute to the Down syndrome kids' greater sensitivity to a specific cancer fighting drug, called cytosine arabinoside, which is used in treating AMkL.

     Cells with the normal GATA1 protein were 8 to 17 times less sensitive to the chemotherapy drug.  They were also 15 to 25 times less sensitive to gemcitabine, another leukemia drug.

     Tests of cells taken from 16 newly diagnosed Down syndrome children (including 12 AMkL patients) and 56 non-Down syndrome children with AML showed that 14 of 16 Down syndrome kids had the GATA1 mutation.

     This GATA1 mutation is a double-edged sword. It may increase a child's risk for leukemia, but it may also contribute to the high survival and low relapse rates of this unique group of Down syndrome patients.


PT Strides

Josiah met with D (physical therapist) from EI on Thursday.  It was one of those "Wow!" sessions.  Josiah met D with a huge smile and readiness to work hard.  D's session note reads, "Josiah had the best session."  It is obvious that his stamina and strength continue to improve by leaps and bounds.

In this first picture, D is encouraging Josiah to utilize his arms for trunk support.  Josiah's chest is being supported by her hands.  It is hoped that he will start to demonstrate good "weight bearing" on his arms.  This accomplishment is a critical next step.  As you can see from this picture, Josiah has gained a lot of head control in the past few months.  He is able to hold his own head up for extended periods of time now.

Josiah leans on D, arms supported, in an effort to "learn what it feels like to sit."  Josiah's trunk is still quite floppy.  However, with a little arm support and place to rest his head - he's starting to figure it out.  Look at the little grin on his face :)

Here, he has to utilize more of his own muscles to keep his trunk from becoming floppy (he's not actively leaning on D).  D continues to support him via his arms.  As he uses his neck muscles to support his head, he has to work much harder.

Josiah gets tired as the session continues.  Here, he uses a boppy pillow for support while he rests his body.  He uses the binky (aka, pacifier) which is another tool used to increase muscle tone.  "The pacifier strengthens oral motor control and helps develop the muscles needed for drinking, eating solid foods, and talking."  (  You can see here that he is able to hold his 'binky' in his mouth.  We even observed him take the binky out of his mouth and successfully return it to his mouth :)

As Josiah nears the end of the session, he is exhausted.  He has worked hard.  We resort to the tripod toy - it is the one toy that usually prevents a meltdown (especially at the end of the session).  Josiah is content to play with the dangling toys.  This, too, is still work but disguised as play.  Josiah continues to strengthen his arms and stamina, each time he reaches for a hanging toy.

D is packing up to leave.  I can the exhaustion in Josiah's eyes.  He has worked hard.  He deserves a break <3.

Next week, we'll do it all over again! 

Wednesday, May 16, 2012

The Feeding Session

Josiah met with C (feeding specialist) today.  He was pleased to see her as evidenced by his smiles :).   Though it had only been one month, C seemed to be impressed with how well he is doing.

We quickly got to work.....eating.  I offered Josiah a bowl of rice cereal.  He did an amazing job!!!!  C couldn't believe how well he did.  Josiah does present with open mouth posture, but there is no protruding tongue or tongue thrusting (which is usually a problem with DS children).  Josiah was able to quickly take food off the spoon, utilized his tongue appropriately, and swallow without incident.  He demonstrated this repeatedly until all food had been consumed lol.  Then, he was mad.  He was happy to drink the remainder of the bottle to wash down his brunch.

Josiah burped well (lol) and was ready to play with C.  He laid on the mat ready for action.  When C asked if he was rolling yet, he immediately rolled over for her (we both just looked at him).  Today, for the very first time, Josiah rolled from belly to back (a deliberate roll, as opposed to an accidental roll).  He reached for, and grasped, toys that were offered to him.  During belly time, he reached his arms out.  He lifted his head high off the floor.  He turned his head in both directions.  Here he is working hard:

Sometimes I watch in awe; today was one of those days.

As a side note: C & I were talking about the weight gain battle.  Given that Josiah's at the 10th percentile for weight & 50th percentile for length, C & I are thinking that I shouldn't get so anxious about this issue.  I was commenting to C that I had bought a scale for Josiah, but found myself too anxious every time I weighed him.  C said, "let's weigh him."  The scale got dusted off (hahaha) and we placed him on it.  Today's weight: 12lbs 6.5oz; he had on a dry diaper and onesie.  3 weeks ago (April 17th), he weighed 11lbs 6.5oz.  I was pleased.  We are so very blessed <3.

Feeding and Tongue Thrusting (not what I thought)

So, apparently, tongue thrust is simply a protruding tongue and open mouth posture.  I was mistaken in the belief that it was a tendency to push the food out of ones mouth (which is common for all babies).  With that being said, I'm not sure if Josiah has this issue or not.  He certainly doesn't have it to the same degree as some I've seen.

None-the-less, I had read about a technique (for feeding) which teaches a young child to keep their tongue in their mouth.  If you watched the video in yesterday's post, you'll see that I used it there.  The technique is simple.  You feed your child holding the spoon sideways to their mouth.  You allow them to retrieve the food from the spoon that way.  You turn the spoon 180 degrees, 3x, until the food is gone.  This teaches the baby to keep their tongue in their mouth while eating.  In the video, it is demonstrated (and seems to work quite well).

The following page shows great pics, demonstrating the technique.  It was the source I used & is very helpful:

Today, Josiah will meet with the feeding specialist.  We will have a feeding session so that she may observe him eating.  I'm curious to see hear her thoughts.

I'll update you later :)

Tuesday, May 15, 2012

Feeding and Tongue Protrusion?

Feeding your kids is something a lot of parents take for granted.  Once the MD gives you the 'thumbs up' to present 'solids,' you think nothing more of it.  If you're like me, you worry about the possible allergic reaction, or initial choking/gagging, but you never give much thought to their tongue.  I certainly never did.  Then you have a child with DS and, suddenly, you find yourself looking at feeding in a whole new way.

I had read that babies/children with Down Syndrome (DS) often have a protruding tongue (so far, this doesn't seem to be the case with Josiah).  Tongue protrusion may be exacerbated by any of the following factors:

1.  Babies with DS have a weak suck and learn to control the flow of liquid by protruding their tongue.

2.  Individuals with Down Syndrome have a smaller, higher arched hard palate which means that the tongue is contained in a smaller than average space.  The first time the MD came to see Josiah (which was in the hospital), he almost immediately stuck his finger in Josiah's mouth.  He quickly proclaimed, "Yup!  He has an extremely high palate."

3.  There is lower than average tone in the muscles of the tongue. This makes it appear larger because it is floppier (Josiah's tongue doesn't seem to be larger; floppier, yes). Tongue movement depends on the actions of a variety of muscles in the mouth and it plays a role in swallowing, breathing, chewing and speaking. Individuals with Down Syndrome have difficulty with producing and co-ordinating the necessary movements to control the tongue.  Josiah's PT has commented, at times, that Josiah's tongue 'is all over the place'.

4.  During normal development, the tongue grows at a different rate to other parts of the face such as the jaw, which in the early years, normally results in the tongue having a high, forward position in the mouth. This, combined with a smaller oral space and low tone in the tongue, may result in the tongue protruding.

5.  The muscles of the tongue constantly correct and readjust the tongue’s position in the mouth, based on the sensory feedback it receives. Many children with Down Syndrome have difficulty receiving and integrating sensory information and may not develop these skills as quickly or completely. Consequently, they may not be aware that their tongue is protruding.

6.  Tongue protrusion may also result from an inability to move the jaw separately from the tongue. This is a skill that develops over time and is dependent on jaw stability. Without this stability the tongue protrudes as the jaw lowers.

7.  Tongue protrusion may develop due to airway compromise such as large adenoids or tonsils, which are common in individuals with Down Syndrome.

8.  The ability to self-correct a protruding tongue requires some degree of insight and motivation to change. Depending on a child’s age and developmental level, this self-monitoring may not develop fully, or may develop much later.

9.  Many children with Down Syndrome have delayed motor development and therefore may not have the stable base from which oral-motor skills can develop.

10.  Upper respiratory tract infections, which block the child’s nose, may cause them to breathe through their mouth rather than their nose. In mouth-breathing the jaw lowers and the tongue is no longer contained within the mouth. These infections may develop as a result of middle ear infections, which are common to individuals with Down Syndrome. This develops due to a dysfunction of the Eustachian tube, which is located at the back of the throat and is connected to the middle ear (its function is to equalise air pressure on both sides of the eardrum). If there is low tone in the muscles surrounding the entrance to the tube, fast-flowing fluid may enter the middle ear, causing an infection over time.

Knowing that tongue protrusion may be an issue, I decided to video record a recent feeding.  In the video, Josiah was eating rice cereal (which is relatively new to him).  I don't see evidence of tongue protrusion.  I do think there is some tongue thrusting (common with all babies).  I'll delve into tongue thrusting next time :)

I will show this to the feeding specialist (who comes tomorrow).  Meanwhile, enjoy the video & tell me what you think.....  

Sunday, May 13, 2012

Introducing Stone Soup 051312

My son, Josiah, was my inspiration for writing this blog.  Early in our pregnancy, we were told that he was likely to have Down Syndrome.  Our 'difficult decision' was never about 'keeping' him (that, was never a question).  Rather, it was "should were get the amniocentesis."  We decided to do the testing.  A few weeks later, their fears were confirmed; ours, relieved.  We knew what we were dealing with & there were many more terrifying possibilities that we no longer had to fear.

In the early months, there seemed to be a lot to write about as we adjusted to our new miracle.  Josiah got RSV and endured open-heart surgery.  Feeding/weight gain was, and continues to be, a struggle for him (and us).  However, after Josiah recovered from surgery, there seemed to be a bit of a lull.  There didn't seem to be a lot to write about.  Couple that fact with a little guilt (I felt I was shafting my other boys), I started included 'family stuff."

Regretfully, it's been suggested/implied that I've lost focus on this blog, that I'm including too much information beyond that which this blog was intended.

So, I've come up with this simple solution.  When I am interested in integrating 'other happenings,' I will title the post "Stone Soup" with a date.  This way you, my reader, will know that the post will NOT be focused on Josiah, or Down Syndrome, in general.  Posts should now be easily discernible for all, whilst giving the reader the choice in which posts to read.

From a historical standpoint, 'Stone Soup' is an old folk story which is, essentially, the story of cooperation.  From Wikipedia:

"Some travellers come to a village, carrying nothing more than an empty cooking pot. Upon their arrival, the villagers are unwilling to share any of their food stores with the hungry travellers. Then the travellers go to a stream and fill the pot with water, drop a large stone in it, and place it over a fire. One of the villagers becomes curious and asks what they are doing. The travellers answer that they are making "stone soup", which tastes wonderful, although it still needs a little bit of garnish to improve the flavour, which they are missing. The villager does not mind parting with a few carrots to help them out, so that gets added to the soup. Another villager walks by, inquiring about the pot, and the travellers again mention their stone soup which has not reached its full potential yet. The villager hands them a little bit of seasoning to help them out. More and more villagers walk by, each adding another ingredient. Finally, a delicious and nourishing pot of soup is enjoyed by all."

Just like the story, Josiah is not the only member of our family. He IS an integral part of it.  Not all of our activities or plans are based on Josiah, or his needs.  Our day-to-day happenings help create our household, add to our experience, shape who we are as people, and enhance our adventure.

Every 'Stone Soup' entry may be that bit of carrot, garnish, or seasoning that demonstrates how this family, including Josiah, reaches its full potential each and every day.

Saturday, May 12, 2012

Friday's Facts 051112: Physical Characteristics

Most children with Down Syndrome (DS) share similar physical characteristics; The are traits common in Down Syndrome.  These occur in 80% of all cases.  Here are some of them:
  1. the eyes have an upward and outward slant
  2. there is a fold of skin on the inner side of the eye (epicanthal fold)
  3. the eye slit is narrow and short
  4. small, white patches can be seen on the edge of the iris
  5. the face has a flat appearance
  6. the head is smaller than average
  7. the soft spots on the head (fontanels) are larger than normal because the baby is growing more slowly
  8. the ears are smaller and lower-set
  9. the mouth is small and the lips are thin which leads to the tongue sticking out because the inside of the mouth is smaller
  10. the neck appears slightly short and loose folds of skin are seen at the back and sides (these go away as the baby grows)
  11. the legs and arms are short in relation to the body
  12. the hands are broad and flat with short fingers, the little finger slants inward, and there is a single crease across the palm
  13. the feet are broad with short toes and there is a larger space than normal between the big toe and the other toes
  14. there is poor muscle tone (hypotonia) and loose-jointedness (hyperflexibility)
  15. reflexes tend to be weaker and the cry is weak

Wednesday, May 9, 2012

Approaching Seven Months

It's hard to believe that Josiah will be seven-months old on Saturday.  Where have these 7 months gone.....

K (Josiah's early intervention worker) came out to work with him on Monday.  He was happy to see her, as usual.  He tolerated handling well.  In side lying, he willingly reached for (and grabbed at) his favorite toys.  On his belly, he was able to lift his head (to a 90 degree angle) and turn his head in both directions.  He held his head "mid line" for about one minute.  With support, he was able to sit on his bum & hold his head steady.  Again, he was able to turn his head from side-to-side. 

He didn't last nearly as long as usual.  He appeared uninterested, at some level.  I finally deduced that he may be hungry, so in came the bottle.  For the next twenty minutes or so, Josiah laid on the mat, drinking from his bottle, and playing with the toys dangling overhead.  Luckily, afterwards, he was willing to engage with K again (for a little more work).

K & D (the PT from EI) will be doing their 'six month' assessment on Josiah, in the coming weeks.  K allowed me a sneak peak into the assessment.  At a glance, Josiah seems to fall into the 4-6 month age-level for many of the categories.  Gross motor will likely fall into the 3-month bracket; Socially, he will likely fall in the 7-9 month bracket (right on, or a little ahead of, schedule). 

Meanwhile, Josiah continues to eat cereal once daily.  He continues to be alert, active, and constantly desiring attention :)  He loves to be talked to.  He loves to be the center of attention.  He loves to smile.  He looks older somehow.

In a moment of excitement, I tossed him on the scale the other day.  Once again, the weight is a frustration for me.  It still seems that he is only gaining about 1/2 ounce per day (not the ounce per day his pediatrician desires).  I keep having the same arguments in my head over this.  "They want him gaining an ounce per day."  "Well, he has Down Syndrome.  Maybe he's never going to gain an ounce per day."  Etc, etc, etc.  This argument in my head keeps rolling like the energizer maddening!  I'm doing everything I it enough????  He's been sleeping about 12 hours at night; maybe I should wake him once during the night for an extra feeding.  UGH!

Josiah enjoyed playgroup on Tuesday.  He was asleep when we first arrived, but woke up a short time later.  He spent most of the time sitting on the floor, in between my legs.  He enjoyed watching the other children playing.  He'd smile every time James or Jesse came within eye-shot :)  He does love his big brothers.

Tomorrow, D comes for their next physical therapy session.  He'll need to be woken early so he'll be ready for her.  Speaking of schedule, I need to get him up now so I can feed him and get him back to bed for the night.

Good night all :)

Tuesday, May 1, 2012

Boppy's, Burps, and Bucket Lists

Josiah had EI on Monday morning.  He loves his time with K.  His stamina seems to be increasing.  He really enjoyed tummy time, lifting his head & turning it side-to-side like a pro.  Sometimes, he uses the boppy pillow; sometimes he lays flat on his tummy.  He does well either way.  We experimented with a new 'gym-type' toy - it was a smashing success!  It has a mirror & folds down for use during tummy time.  Josiah enjoyed looking at that cute baby in the mirror :). 

James was up, and quietly watched K work with Josiah.  I think James wanted to to play but knew it wasn't his turn.  K will be back on Thursday for James.  This week's two playgroups will help pass the time.

Josiah continues to eat his rice cereal once daily.  He seems to enjoy it, most of the time.  I'm working on using different spoons so he'll get use to different textures.  I still imagine his high palette is going to act as an obstacle, at times.  I'm researching this a bit to see what kind of information I can find on feeding, high palette, etc.  It's a work in progress.

Jesse finally felt better & was back to school first thing Monday morning.  He shows no signs of the illness that kept him home last week.  Luckily, no-one else in the house was stricken with the illness.

Today, Jesse's friend came over & we all enjoyed playgroup.  It rained, and was cloudy, all day.  Somehow, that made me feel very tired all day.  The weather doesn't show any real signs of improving for the next several days.  I'm looking forward to sunshine :)

Every day, at various times, I find myself surfing the net.  I recently came across links to a baby who's parents had started a bucket list for her.  After a few clicks, I learned that the little girl's name is Avery & she is 5 months old.  Avery has SMA - Spinal Muscular Atrophy.  The MD's said she won't live beyond her 2nd birthday.  With SMA, eventually, all control over arms is lost.  Second, all control over legs are lost.  Third, all control over breathing is lost.  It's a rare disease and very little is known about it.

Rather than cry now, while she is alive, her parents decided they would cry later - after she is gone.  They decided to create a bucket list for Avery & fill her remaining days with LIFE :)  Avery's Dad started a great blog in which they show Avery fulfilling her life with great adventures <3.

I think back to when we learned that Josiah had a chromosomal abnormality - we didn't yet know which one - there were many it could be.  Trisomy 18 was one possibility.  I read a little bit about it.  I was scared to death.  The 'normal' lifespan for a child with Trisomy 18 is 4-14 days.  Many children with triple 18, never come home from the hospital.  I remember one day praying, "Please Dear God, don't let it be that!"  When we received the final diagnosis of Trisomy 21, I was so very relieved.  I remain relieved.  I am thankful for a beautiful baby that will grow into adulthood.  I am thankful for God's grace. 

Tonight, I pray for Avery's parents.  They can finally stop to cry.

RIP Avery Lynn Canahauti 11/11/11 - 4/30/12 <3