Monday, March 29, 2010

Happy Heart Day Lil Man!!!!

UPDATE: Asking for urgent prayers for a local heart buddy.  He had some trouble the other day and had open heart surgery tonight.  He is currently on ECHMO and will be for at least 5 days.  Lil Man's surgeon worked on him.  Keeping  Ashton and the Norwell family in our prayers; also all of our cardiac friends at St. Francis.  Get well soon Bud!

It is unbelievable that six years ago today, Lil Man had his first open heart surgery!  Little did we know the roller coaster ride yet to come. 

It was origianlly scheduled to happen about a week earlier.  We went to the hospital for the Pre-admissions stuff (tour of the ICU, etc) and our surgeon came in and said that they were going to have to put off the surgery for about 3 weeks.  My Mom and Dad were with us.  Mom had scheduled her classes around this surgery, along with Big Chris' vacation and FMLA leave.  While that was a pain, it wasn't the biggest issue.  Before I knew it, I blurted out, "He will be dead in 3 weeks.  We don't have time to wait."

Our surgeon looked at me like I just grew two heads. He left the little conference room we were in, and was gone for awhile.  Meanwhile, Mom and Dad were trying to figure out vacation schedules and school schedules - I remember Mom chastising me for being so blunt with the doc.  I really wasn't that interested.  :)  If you know us, you know that is a weekly conversation.  LOL!  He FINALLY came back in and said they could get us in in 4 days.  That was better than nothing....

At this point, Lil Man was just barely 3 months old.  He had already aspirated several times (although we didn't know that yet), had been diagnosed with seizures and pediatric stroke, and his O2 sats would drop to the 30's and 40's several times a day.  Due to the nature of his heart defect, we couldn't put O2 on him.  If we did, all of his blood would rush to his lungs, bursting the capillaries and drowning him.  We had to get his sats up everytime he dropped them WITHOUT O2.  Plus, his seizures were not controlled.  He was not having the thousands that we started with, but he was still having hundreds a day.  The absolute worst time during surgery was going in to and coming out of anesthesia because it could mask severe seizures, and by the time they realized what was going on it would be too late.

His heart defect was classified as a complete AV Canal Defect and a huge PDA.  What we didn't realize was the extent of the defect.  Originally, we were told that his heart formed perfectly on the outside and failed to form at all on the inside - no chambers, valves, etc.  This is still how I describe things to those who have no cardiac experience.  The reality was that his heart was lopsided - 1 cm from being considered Hypoplastic Left Heart Syndrome.  It was a miracle he lived that long.  They had to build a septum in the heart, making the chambers and valves.  He had one flap of his tricuspid valve, the mitral valve was non-existant, both his pulmonary and aortic valves only have two flaps instead of three. 

Most AV Canal repairs are made a little easier by the fact that there is either already a partial septum (holes in the heart) , or a ridge down the middle of the heart where the septum should have formed.  He had neither.  The important thing to remember is that the electrical "lines" run down the heart close to where the septum is, or should be.  They are invisible to the docs, you know if you have damage because the heart fails to beat or beats irratically.  That ridge is a guide that the heart surgeons use to build or repair without  hitting the electrical system.  They went in blind on Lil Man. We were prepared that he would be dependent on a pacemaker for the rest of his life.  We were also prepared that they would end up having to use artificial valves, requiring a lifetime on blood thinners and replacement surgeries to keep up with his growth. That was also the first time we spoke with a transplant coordinator and found out that they don't do transplants on people with Down syndrome - "because they don't like to waste the organs."....ahem.

The last part of the defect was the PDA.  All babies have a PDA.  This is a small connection between the pulmonary artery and the aorta.  The reason this exists is because before a baby is born, there is no need for the blood to circulate through the lungs to pick up oxygen.  This is done through the mother's lungs and passed to the baby through the umbilical cord.  Nobody is sure what triggers it, but either during the birth or shortly after, the PDA closes on its own.  For some babies it doesn't close.  It can be closed with meds, by a cath procedure, or an open heart procedure.  Most of the time, it is just a matter of snipping the connection.  For Lil Man, the pulmonary artery and the aorta were basically fused, instead of just having a little bridge.  So both had to be reconstructed as well.

We went home for a few days and returned to Peoria the day before surgery to do the Pre-op stuff.  On our tour through the PICU, we met Barb, Jeff, and little Joshua.  Josh was a few days old and had his surgery the day before.  He was too swollen to close his chest, so we were able to see what things would look like if that happened with Lil Man.  It was amazing to see this little baby laying there, on a vent, with his chest wide open covered in basically Saran Wrap.  You could see his lungs expanding and his little heart beating away!    We had no idea how close we would become to this family...

The next morning - too freaking early - we headed back to the hospital.  While in the surgery waiting room, there was a beautiful little girl running around.  She was everywhere at once.  Her parents noticed us and came over to make over Lil Man.  It was then I noticed that the little girl, Princess Tiffany, had Down syndrome.  She was there for ear tubes.  She had AV Canal repair at 4 months.  Her Mom and Dad kept reassuring us that although it would be hard, things would be OK. 

Big Chris and I were the only ones allowed back into Pre-Op.  Gamma and Papa had to say their goodbyes at the door.  After doing the talks with anesthesia, the surgeon, and about 5 different nurses it was time to hand him over.  They don't let parents go to the operating room.  He was soooo aware of things that morning, which was unusual.  We would not see him that aware of anything for at least the next 6 months, or more.  We were told there were three outcomes: 1) he would not survive the surgery, 2) he would survive with either brain damage, artificial heart valves, a pacemaker, or all three, or 3) he would come through with flying colors.  We prepared for the worst, but prayed for the best.

Then we waited, and waited, and waited.  We waited for 11 1/2 hours of actual surgery. It was 14 hours before we could get a brief glimps of him as he and his entourage flew down the hall with more medical equipment than it seemed could physically fit down the hall - they were moving too.  It takes a special group of people to coordinate THAT dance without ripping out something or getting tangled or running into a wall or something.

The surgeon came to talk to us about this time.  They ushered us to a conference room and it was actually several docs that came in.  The first thing out of the surgeon's mouth, with a sheepish look was, "You were right.  He had maybe one or two days left."  They proceded to tell us how they repaired everything and what to expect.  Another doc came in and asked us to sign consent for what, at the time, was an experimental treatment.  They were having trouble keeping his O2 levels up.  There was already one other kiddo in the PICU on ECHMO (heart lung bypass), so they treated him with Nitric.  (not nitrous) It is lighter than oxygen, but it attaches itself to the oxygen molecules and "floats" the oxygen into the lungs.  This allows it to go in to parts of the lungs where O2 couldn't squeeze through.  What nobody realized was that Lil Man had Pulmonary Hypertension - fixing the PDA likely made it worse. 

We FINALLY got to see him 14 hours after we handed him over.  The entire room was filled with I.V's an the vent, etc.  It was all very scary at first, but you got used to the equipment pretty quick.  As I said, there were three other kiddos up there who were pretty sick - one on ECHMO, the other with an open chest., the third a 4 lb baby with gastroscheisis who was born at 1 1/2 pounds.  We would get to know ALL of these folks well.

This started our 6 month hospital stay.  We learned many lessons, met wonderful people, and made lifelong friends along the way.  We are so proud of how far you have come Lil Man!  We can't wait to see what comes next.

BTW - I will try to add pictures later - our scanner is acting up.  :(



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Saturday, March 27, 2010


We have been working A LOT with Lil Man's communication lately. I say communication because, just like everything else in our lives, we use a jumble of different things to help him get his point across. He vary rarely has an issue letting you know when he is frustrated or just not happy with something. :)

We have been taking him to Rehab Institute of Chicago for Augmentative Communication Therapy (Roger Ebert also goes here - same clinic). He has only been twice, but already he is showing soooooo much improvement! The last time we were there, they told us we didn't have to come back for awhile. They have given us a modified PECS system to use with him. He has 4 or 5 laminated sheets hooked together with a ring. On each sheet, there are 8 squares, each with a different picture in them. Some are his favorite toys, one is a kleenex (I'll explain that in a minute), others are action words (watch T.V., throw a ball, etc).

The goal is to go through each square and look for SOME consistent reaction from him. Ideally, he would either sign yes or no, or point to what he wanted. With him though, we don't always get that. If he is overwhelmed, you will be lucky to get eye contact. So, we go through each square and look for a reaction. The Kleenex is purposely put in there to check and see if he is just giving a reaction to get you out of his face. So, if he really wants his toy, but reacts on Kleenex - he gets the Kleenex. It weeds out the behavioral control issues from true commuication skills. Not that behavioural control is not communication in itself. Its a little confusing. Sometimes his behavior is the only thing that he has control of in his world.

I am going to be working on getting some new sheets put together.  There are several programs out there for this, but I think it will be easier to take a picture of what we are targeting (specific toy, HIS bed, etc).  Obviously, there are some things we can't take pictures of.  I have lots of pitures of the signs for those things (i.e. hurt, want, all done, etc)  I think I will use those.  It will also reinforce his sign usage. 

They have commuication devices that do the same thing.  When you bush the button/picture, the device "says" what the picutre is.  There are several types out there from simple 1 picture ones to 20 picture or more ones.  Like these.  If you went to the link, you will see they are also very pricey.  Our insurance will help cover one device every 5 or 6 years.  So we have to anticipate what Lil Man's needs will be 5 or 6 years from now. 

The therapists have tried several of these devices with Lil Man.  What they didn't realize before we started trying them out, was that Lil Man doesn't like too many toys that aren't push button/feedback toys.  He likes lights and music especially.  He doesn't seem to care too much for action (like robots, etc). I think it is too hard for him to track.  If left to his own devices, he will self stim with most of these toys.  Anyway, he mastered all but the 20 picture device in a 30 minute session....ahem.

That means that the next step is an actual computerized device.  This will last MUCH longer, is customizable, and also MUCH more expensive.  These are the ones we are looking at.  They kind of look like a huge iPhone. 

We will still be continuing with regular speech therapy.  He does have a few words, and those he does have we would like to be clear to others when he says them.  I don't know if he will ever be able to eat by mouth.  Not so much because he physically can't/won't do it, but because of the reflux.  Have to protect those lungs!

One obstacle that we have to overcome is his brain damage.  This is an ever present demon with regards to his abilities.  On paper and on his MRI's, EEG's, etc, he should be in a persistant vegitative state.  He is literally missing AT LEAST half of his brain matter.  Beacause the O.B. that I had deleted every...ultrasound...the night he was born, we have no idea what he started with.  We don't know if his brain had formed normally and this is mostly stroke damage, or if it formed incorrectly from the get-go and more damage was done from the stroke, crashes, etc.  Either way, he has stroke damage, damage from thousands of seizures, damage from poor perfusion, damage from crashing so many times....Lots of damage through out his brain.  It is VERY obvious to anybody who meets or examines him that he has "re-wired" himself.  There are entire chunks of brain missing that "should" be controlling specific things - i.e. speech, emotion, etc. 

He seems to have a full range of emotions - he is not "flat", doesn't have rages, etc.  He has normal temper tantrums, but they are few and far between and don't last long.  Recognizing others' emotions is a developmental milestone that we haven't reached consistently.  He uses about 10 signs consistently.  He uses about 10 verbal words consistently, but if he learns a new one he will drop an old one.  Every once in awhile he will "parrot" something VERY clearly and may repeat it ten times within an hour.  Come back and ask him to say it the next day, and you will never hear it again. 

He does comprehend most of what is being said to him. If he didn't, he couldn't give you the "evil eye" and do exactly the opposite of what you are asking!  Expressing his wishes without prompting is an issue.  I have done a lot of research on speech, reading, and learning patterns of people with Down syndrome.  For many, speech "kicks in" AFTER starting to learn to read.  We don't know if those typical learning patterns will hold true for him.  "Typical" is NOT a word that applies to us very often!  :) 

This didn't start out as another long post, sorry!  We will keep you updated as we progress.  We welcome any and all ideas that you would like to pass on to us!  Thanks for stopping by! 



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Sunday, March 21, 2010

World Down Syndrome Day

Lots has happened since our last post....Lil Man had another series of seizures and was hospitalized.  So far, he has not had anymore.  Adjusted his meds agan and had a new EEG.  Haven't heard the results, but I'm pretty sure that nothing has changed or his neuro would have called us.

Last week, Gamma (a.k.a. my Mom) went in to the ER with trouble breathing.  Four days, an angioplasty, two stents, and an appointment with Cardiac Rehab later - she is home. 

Sunday, March 21 (3-21) is World Down Syndrome Day.  People all over the world will be celebrating our wonderful kiddos with a little something extra!  If you are so inclined, people all over the world will be releasing blue and yellow balloons at 4 p.m. your local time....

In the spirit of World Down Syndrome Day, I thought I would post some links for your enjoyment.  These came from a variety of resources including our local DSN newsletters:

The first few are for the locals - local being in Illinois.  Feel free to check them out even if you are not local:

HOISDA - Self Advocate Advisory Board:  The Heart of Illinois Down Syndrome Association Board of Directors approved the bylaws to provide for a Self-Advocate Advisory Board.  The purpose of the Advisory Board is to provide guidance and assistance to the Board of Directors  to promote awarenes of Down syndrome issues  and empower those with Down syndrome to  direct their own lives and achieve maximum independence.  The Self-Advocate Advisory Board accomplishes these directives by : Educating, Communicating, Sharing information and resources, Networking, Mentoring, Promoting respect and dignity, and Encouraging each other.  Please contact a Board Member if you are interested in an appointment to the Advisory Board.

The HEAT Program:  The Help Empower And Teach Program provides an opportunity for students to promote positive lifestyle choices among their peers.  They will focus on sexuality education and dating for the HOISDA group.  A seperate program will be offered simultaneously for parents.  The date of the presentation throught he Wellness Program at Bradley University is Thursday, April 15 from 7:00 to 8:00 p.m. at Bradley University.  You can learn more information about the HEAT program at

 Inclusive Practices in Early Childhood:  Sponsored by ProjectCHOICES - April 30, 2010, Grizzley Jack's Grand Bear Lodge, 2643 N. IL Route 178, Utica, IL 61373, Cost: $30 Professional, $10 Family Members, Questions : 630-629-0551

Family Matters Parent Training and Information Center (FMPTIC):  4Th Annual Family Conference: Resources and Inspriation for Adult Caregivers and Family Members of Children with Disabilites, Saturday, May 1, 2010 - For additional information contact: Deb Einhorn, Family Matters, 1-866-436-7842 x116 ,  or Mary Smith, STARnet Regions I & III , 217-742-5252,

HOISDA /Advocates for Access Workshops - FMPTIC:
3-29-10  Removing Barriers and Building Bridges with Your School and Being Your Child's Advocate

4-26-10  Solving the Empowerment Puzzle for Youth with Disabilites

6-7-10  FAT City: (Fear, Anxiety, and Tension) Understanding Learning Disabilites

These workshops will be taught by the staff of FMPTIC.  All sessions are FREE  and a light meal will be provided.  Register at  Time and Location: 5:30 - 8:30 p.m. at Advocates for Access CIL, 4450 N. Prospect Rd., Ste C8, Peoria Heights, IL 61616

Here is a little something for everyone!  Enjoy!

Self-Care: Why Parents of Children with Disabilites Must Nurture Themselves: From Disaboom:

The "Other Child" with Special Needs: Understanding Siblings:  From Disaboom:

Positive Discipline for Children with Special Needs: From Disaboom:

Canadian Down Syndrome Society: Lots of great information here     Also a great section on Teaching Children with Down syndrome

Think Beyond the Label:  Think Beyond the Label is committed to making the business case  for employing people with disabilites.  They are a partnership of health and human service agencies, and employment agencies with federal grants, coming together to build a uniform national infrastructure and approach that connects business to qualified candidates with disabilites.  The goal is simple: to raise awareness tha thiring people with disabilities makes good business sense.  Employes with disabilites have unique, competitively relevant knowledge and perspectives about work processes, bringing different perspectives to meeting work requirements and goals succesfully.  Hiring someone who " thinks outside the box" might be thinking too small when there's an oppoetunity to hire someone who lives outside the box.

Bike-On America:  Offers adaptive trikes, bicycles, and handcycles.  Visit their site at

Documenting Disparities in Obesity and Disability:  The recent FOCUS Technical Brief presents NIDRR-funded research highlighting the deparities inobesity experienced by youth and adults with disabilites.  Authors James H. Rimmer, PhD; Edward Wang, PhD; Kiyoshi Yamaki, PhD; and Brianne Davis, MPH conducted the research for the Disability and Rehabilitation Research Project (DRRP) "Reducing Obesity and Obesity-Related Secondary Conditions in Adolescents with Disabilites" (H133A060066), Center on Health Promotion for Persons with Disabilites, University of Illinois at Chicago.
Youth with Autism were 2.2 and 1.8 times more likely to be obese and overweight, while youth with Down syndrome were 3 times more likely to be obese and overweight compared with youth without disabilites.
The research shows that overweight and obese youth with cognitivie disabilites (Autism, Down syndrome, intellectual disability) had a significantly higher prevalence of high blood cholesterol, early maturation, and diabetes than youth with healthy weight.  The report can be found at:

Buddy Cruise: Buddy Cruise is a unique conference for families of people with Down syndrome.  This year it is being held onboard Royal Caribbean's Monarch of the Seas.  They set sail July 19, 2010.  Time is running out to reserve your cabin for Buddy Cruise 2010! At this time there are a limited remaining that will hold more than 2 guests.  Call 1-877-BDY-CRUZ option #3 to reserve yours today. (other cabin options available)  Once your cabin is confirmed, don't forget to register online at    They have started to post sessions and events on our website, check often for updates. They ahave just confirmed Chris Burke from "Life Goes On". They are thrilled that he and his band mates, Joe and John , will be joining.

Take the Initiative - TTI at Western Illinois University:WIU has applied for a grant for a three phase integrated program to give individual with Down syndrome for the opportunity to be employable college students.  This program will allow students to take full advantage of all that a university campus offers, such as learning in and out of the classroom, access to technology, campus recreation programs, performing arts, preparing for a job and above all, a chance to realize their full and often underestimated potential.

Early Childhood Inclusion Training Resources: SpecialQuests's Preschool Inclusion Series videos and training sessions explore several aspects of including pre-school age children who have disabilities in programs and settings with their typically developing peers.

IEP Checklist App for iPhone:  Did you know there is a newly developed Individualized Education Program (IEP) Checklist iPhone application? The IEP is an individualized program designed to support the educational needs of school aged students with disabilites.  This new IEP app helps parents of students with special needs become better-informed advocates by making IEP information easier to access.  The IEP app is offered free of charge and is downloadable at iTunes. 

Down Syndrome Education International:  They are launching a series of online events presenting the current research activities of DSEI and their partners.  The live events are free to access online and by telephone for families, professionals, and scientists worldwide.
Over the past , developmental and educational research has increased what is known about the learning difficulties experienced by people with Down syndrome.  THis research has improvedteaching techniques and transformed education for many thousands of young people with Down syndrome today.  However, much remains to do.  Many improtant questions remain unanswered and many specific interventions have not been sufficiently evaluated.
Their series of online events will present our current research activites and discuss how they are working to answer critical questions about development and education for our children with Down syndrome.

QR Pharma Receives US Patent to Treat Down syndrome:  Radnor, Pa. -  QA Pharma Inc., a developer of novel ddrugs to treat Alzheimer's disease (AD), announced that it was issued a U.S. Patent No 7,625,942 a "Method of Treating Down syndrome" by the U.S. Patent and Trademark Office.  The '942 patent covers use of Posiphen and analogs to treat cognitive impairments associated with Down syndrome (DS).  This patent valuably expands upon the original Posiphen and analog patent that claims composition of matter and use of compounds to lower amyloid-precursor protein (APP) and thereby treat dementia and Alzheimer's disease. (Aricept?)

USF studies show link among Alzheimer's disease, Down syndrome, and artherosclerosis:  Nearly 20 years ago Huntington Potter kicked up a storm of controversy with the idea that Down syndrome and Alheimer's were the same disease. Now the evidence is in: He was right!

And that is not all.  Down syndrome, atery-clogging cardiovascular disease, and possibly even diabetes, appear to share a common disease mechanism with Alzheimer's disease.  Dr. Potter and colleagues at the Florida Alzheimer's Disease Research Center, USF Health Byrd Alzheimer's Institutes, recently reported.

Full article:

The studies' published papers can be found at:



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Friday, March 12, 2010


OK - I just spoke with the Executive Director of the National Down Syndrome Congress - the guy sounds like Ned Flanders, but was obviously PO'd. They are getting flack from all directions - which is unfortunate. I know they didn't intentionally put the images out there for others to take and use, but they also didn't protect their site as well as it should have been either. They are looking into having to register to even see the gallery from now on.

He did say that he was surprized by the number of people who DID NOT want the posters taken down - that they wanted to be "in the faces" of those who are doing this. I understand that, but it probably wasn't any of the people who had their children's image stolen. Some of those posters were filthy. The one with my son was not as bad as the others, BUT some FREAK has a picture of my son on his computer now!

This thread has come down, but these whack jobs tend to pop up again and again. The ED of NDSC made a comment that I thought was funny - he said that these people probably didn't get out of their parents' basement too often. LOL!

He also said that there was volunteers from almost every state. They are working with the Attny General and several lawfirms, including one in the state of the site administrator. They were able to get screen shots of all of the postings and somebody joined and got screen shots of the member info for all of the poeple who posted there. There is currently a cyber-crimes investigation firm (did anybody know they HAD these?) tracking down information on all posters. He said that some sort of legal action needs to happen but they weren't sure what it would be. They are trying to figure out murky laws in different states.

Will keep you all updated. Thanks so much for the support!

More Alike, Part II

In the last post, I listed posters and asked you to go vote for our kiddos.  Unfortunately, some sick individuals have taken it upon themselves to copy our kids posters and photoshop them with disgusting, filthy titles.  Lil Man's was one that was stolen.  I am currently working with the NDSC, the site administrator, and if neccessary law enforcement to deal with the situation.  In the mean time, I have pulled Lil Man's poster from the running.  Normally, I would not let this interfear with our lives, but some of the things posted are gross and threatening.  I will NOT allow his image to be used for that type of thing. 

I worried about this type of thing happening when I started this blog.  Luckily, the blog itself has not been targeted.  I have the link to the site where this is happening, but I am not going to post it here for two reasons: #1. I don't want these freaks to find our blog if it is not on their radar already, #2. I don't want them to get any more traffic.  You can e-mail me directly or contact me on FB if you want the direct link.  If you do, please send e-mails to the site administrator regarding this crap. 

For now, while you are out cruising the information superhighway, keep an eye out for unauthorized use of pictures of our kids.  These sickos seem to be targeting people with Down syndrome.

Thanks!  Hugs!


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Monday, March 1, 2010

More Alike than Different...

OK folks, it is official....Lil Man has a poster at the More Alike than Different Campaign.  Please take a minute and go vote!  The top three vote getters will have their posters used for national promotions!  Lil Man is number 139.  We also have some friends there too!!!!!  Click on the posters below and it will take you to the site.  Thanks!!!!  Here is the link if those should not work

Lil Man #139:

Sophia from Rejenerations & a local buddy from Champaign County Down Syndrome Network (look to the side for the link to their blog!) - #56

Addy - another blog friend Heflins link to the right - #11

And our local buddy Joey from Champaign County DSN - #21

We also have Larkin from Larkin's Place (on the Right) and our local Champaign County DSN - #113

And Mayson  - #4

Thanks for taking the time to vote!