Wednesday, October 20, 2010

(Almost) Wordless Wednesday



WHAT??  YOU CAN'T SEE ME!!!

Every time Mason & Elijah watch wrestling, this is pretty much where you will find Landon!  No doubt he will be sitting right by his big brother's side whether they are watching it on TV or at an actual event!  


He's already following in his big brother's footsteps!!  Oh the memories these 3 boys are already making!!!!



Wednesday, October 13, 2010

Tuesday, October 12, 2010

Day 12: (31 for 21).....well, Day 8 for me!

I'm a little disappointed that this being my 1st attempt at the 31 for 21 Ds Awareness Challenge, I did not hold up to my end of the bargain=(  For some reason, 5 days have passed, and I just couldn't seem to get a post out there.  Not because there was a lack of things to write about (because Lord knows, I have lots to talk about), but rather, life has just kept us busy these last few days.  For a split second I actually considered myself a failure but I quickly realized that I didn't FAIL, I have just been out "THERE" spreading awareness rather than "here" on the computer.

This past Sunday (10/10/10.....Happy belated Birthday LC!) we packed the car and headed to Wakefield, MA for the MA Down Syndrome Congress' (MDSC) 14th Annual Buddy Walk (to celebrate and promote the acceptance & inclusion of individuals with Down syndrome).  This walk takes place each year in MA to support the more than 5,000 families who have a member with Down syndrome in the Commonwealth.  With the money raised, the MDSC can continue to fund important programs and services in the areas of education, research and advocacy for those with Down syndrome.

I am so happy to share that our local support group, 21FrienDS, worked together in raising over $11,000 (and placed 2nd as the top fundraisers) and had over 100 buddies who put on their walking shoes and stepped up for the cause.  Truly AMAZING!!  We could not have asked for a better day.  The sun was shining and so were the thousands of families who had come together to help raise awareness and promote the positive contributions that individuals with Down syndrome have to offer their communities.  Inspiration everywhere!!!  Not only was this day a day for spreading awareness, but it was a day when families & friends came together to CELEBRATE the lives, beauty & spirit of each of these individuals (of all ages) who have been blessed by that extra chromosome.

This year we participated in our 2nd walk.  I still can't believe a whole year has passed and that Landon is 20 months old.  Landon has been working very hard and has been making such great gains.  We are so proud of him.  We too have come a very long way as a family.  This time last year, we were so afraid of the unknown.  But, with the help of some wonderful support programs & services, this year we walked with an abundance of hope for Landon's future!

This year, Landon was joined by "27" of his closest friends and family members walking by his side, sporting a "Landon's Buddy Button".  To each and every one of you, THANK YOU, your love & support has no boundaries.  This journey would not be the same without you.  We know that some of you were unable to attend, we missed you all!!  There's always next year, and the year after that, etc=)



 There were lots of activities for the kids (face painting, tattoos, etc.).  But an exciting moment for the boys was meeting Rachel Coleman, in person!!  We are so happy that we were able to take a picture "with" her & Hopkins!!  For those of you who don't know who Rachel is, she is a mom to 2 children with special needs and has numerous collections of "sign language" cd's and dvd's (and more).  I have mentioned in a previous post regarding speech therapy, that "sign language" is Landon's primary means of communication at this time.  Landon is learning signs and communicating more each day, thanks to Rachel and her Signing Time videos!!  Mason & Elijah were just super thrilled to meet a "celebrity"!!


Well, guess what??  Rachel wasn't the only one holding "celebrity" status that day, look who else made the list too!!!

(Mommy was a Buddy Walk All-Star)

.....and.....

(Landon's little mugshot made the Buddy Walk Banner)
that's him, top right=)

The day could not have been more perfect!!  
..............UNTIL.THIS.VERY.MOMENT.............


The moment Landon "walked" across the finish line!!
(surrounded by his family & friends)

This little boy "IS" taking steps for a brighter tomorrow!!!

(Mission failed??.........Nah........Mission Accomplished!!!!!)
















Thursday, October 7, 2010

Day 7: (31 for 21)...Some Facts & Our Story

What is Down Syndrome?


Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in approximately one in every 800 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different. (National Assoc. for Down Syndrome)

Cause

Down syndrome is usually caused by an error in cell division called non disjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age. (National Assoc. for Down Syndrome)




Pre-natal Diagnosis  (National Assoc. for Down Syndrome)

Two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome.
Screening Tests
  • At this time the most commonly used screening test is “The Triple Screen.” This is a combination of three tests that measure quantities of various substances in the blood. These tests are usually done between 15 and 20 weeks of gestation.
  • Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some physical traits that are helpful in calculating the risk of Down syndrome.
  • Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false negatives frequently occur.
Diagnostic Tests
Three diagnostic tests are currently available:
  • Amniocentesis is performed between 12 and 20 weeks gestation.
  • Chorionic Villus Sampling (CVS) is conducted between 8 and 12 weeks.
  • Percutaneous Umbilical Blood Sampling (PUBS) is performed after 20 weeks. 

Our Story......

Finding out that we were pregnant for the 3rd time came as a big surprise!  A most pleasant surprise!  The boys were so excited to have another sibling (although they thought they were getting a sister).  My pregnancy started off rather well, this was my first pregnancy that I didn't experience morning sickness.  Woo Hoo=)  I guess you could say that I pretty much had an "average" textbook pregnancy.  Aside from very low iron (which was the case with all 3 pregnancies), a gestational diabetes scare and some minor aches & pains from Landon's positioning, everything was going as it should.

I pretty much agreed to have any non-invasive testing done throughout my pregnancy.  I was aware of false positives and such.  I did have to have a level 2 ultrasound and genetic counseling during my second pregnancy for what was thought to be spots on the baby's brain.  It turned out that those spots were gone before the end of my pregnancy.  I remember thinking back then that ultrasounds could be a good thing or a bad thing.  Sometimes, they pick up TOO much and we worry for nothing.  Having been through that in the past, I didn't let that stop me from doing the same the 3rd time around.

Around 5 months into my pregnancy, I received a call from a Dr. who was filling in for my Dr. while she was on vacation.  He was going over the test results from the "Triple Screen Test" and there were elevations.  He started shooting off numbers and statistics that didn't really make any sense to me.  The most I do remember of that conversation was that I was told that I had a 1:3 risk factor (not diagnosis) for Down syndrome and that I was being scheduled for a Level 2 ultrasound and genetic counseling.

By the time I hung up the phone, I was on the computer googling everything and anything on Ds.  My mind was racing and I couldn't think straight.  First of all, I thought I was too young (I was only 35), I thought your risk factor was higher if you were over 40 (not that I was that far away).  I read for hours.  Mostly scary stuff.  Medical terminology.  Statistics.  Then I became defensive.  NO.  I'm too young.  I've been through a level 2 before and everything turned out fine.  I feel fine.

A week later, Scott & I, went to the Level 2 Ultrasound.  The technician was shocked when we told her our risk factor.  There were certain things she was looking for:  shorter limbs, excess fluid behind the neck, spots on the heart and a crooked pinky (all markers for Ds).  That's right folks, Landon had not 1 marker!!  We then ventured over for genetic counseling in which we were given options to more invasive testing to determine whether or not Landon did indeed have Ds.  We declined.  We were not willing to add any more "risks" to our pregnancy, no matter how small.  The bottom line was, we would welcome Landon into this world, however he chose to enter it.  I must confess, as much as I had my guard up and thought positive thoughts (considering there were no markers for Ds), something inside me just knew.

..........to be continued.........

Tuesday, October 5, 2010

Day 5: (31 for 21)

*(Warning:  picture & video overload....
.....pause music at the bottom of the page)*


"Children with Ds attempt to compensate for their hypotonia, ligamentous laxity, decreased strength and short limbs by developing compensatory movement patterns which, if allowed to persist, often develop into orthopedic and functional problems. The goal of physical therapy is to minimize the development of the compensatory movement patterns that children with DS are prone to develop." (Down Syndrome Quarterly) 



"Gait is a primary example. Ligamentous laxity, hypotonia and weakness in the legs lead to lower extremity posturing with hip abduction and external rotation, hyperextension of the knees and pronation and eversion of the feet.  Children with DS typically learn to walk with their feet wide apart, their knees stiff and their feet turned out. They do so because hypotonia, ligamentous laxity and weakness make their legs less stable. Locking their knees, widening their base and rotating their feet outward are all strategies to increase stability. The problem is, however, that this is an inefficient gait pattern for walking. The weight is being borne on the medial (inside) borders of the feet, and the feet are designed to have the weight borne on the outside borders. If this pattern is allowed to continue, problems will develop with both the knees and the feet. Walking will become painful, and endurance will be decreased. Physical therapy should begin teaching the child with DS the proper standing posture (i.e., feet positioned under the hips and pointing straight ahead with a slight bend in the knees) when he or she is still very young.  With appropriate physical therapy, gait problems can be minimized or avoided." (Down Syndrome Quarterly)


These excerpts coincide with where Landon is at this point in his physical therapy (PT).  Since Landon entered Early Intervention (EI) 17 months ago, all of his services have primarily been home based.  Scott & I felt that having therapy provided in our home, for Landon, would be less stressful for him.  What better way to learn than to be in your own natural environment.  If Landon's services were provided in our home, with his things, Scott & I would have the tools to work with Landon at all times.  


As Landon is getting older and reaching new milestones, we are realizing that our strategy needs to be changed.  We are now realizing that he will benefit MORE if some of his services are received at our local Early Intervention Center.  After all, we cannot compete with some of their equipment and their SI room.  


Now that Landon is standing and attempting to walk with his "walking toy" (semi-independently), he is now showing signs that he is ready for gait training.  And so the fun begins!!  Up until this past month or so, Landon has really enjoyed his "land" based therapy.  Mostly tolerant of all exercises.  But he DID have his moments.  And he deserved every one of them.  He sure is one hard worker.  "Water" based therapy, started off well and then he just wasn't feeling it.  I am happy to say that he is slowly bouncing back.  


Landon is now venturing over to some new and fun (and some not so fun) equipment.  Pictures speak a thousand words!!  



video

video

As grateful as I am for all of these services that are available to Landon, my heart at times weighs a ton.  Moments when happiness & sadness cross paths.  I am so happy that Landon is doing so well and making such great gains, but at the same time, I am so sad that his little 18lb. body has to work so hard.

Landon, you are my hero!!!!





















Monday, October 4, 2010

Day 4: (31 for 21)

Occupational therapy is an important part of Early Intervention programs for children with Down syndrome.  Low muscle tone and loose ligaments at the joints associated with Down syndrome are real challenges to early motor development.  With the help of an OT (occupational therapist), a child with Ds can get the help they need to meet those challenges.  Occupational therapists and physical therapists work very closely in helping children with Ds to develop gross motor milestones (eg:   sitting, crawling, standing & walking).  An OT will also work with a child at this stage to promote arm and hand movements that will help lay the foundation for later developing fine motor skills.

At 19 months old, Landon receives 2 OT sessions a week, one hour each.  With much hard work on Landon's part and help from his OT, Landon is making great strides in reaching his goals/milestones.  For those of you who are not familiar with OT, here are some pics to get an idea of what goes on during these sessions.