The joys

Well, as Down syndrome awareness week comes to an end, i can truely say that I am happy with the choice of blogging everyday during.  I have had over 700 visitors on my blog this week - which is amazing!  even if it was the same 100 people every day of the week, thats 100 people who got to learn more about life with Down Syndrome.  I have also learned a thing or 2 that I didnt know already this week. God is in the business of changing hearts, and a sprinkling of people with Down syndrome among us is one way he uses. Hopefully by reading my blogs you have gotten a different prespective or clearer view on what Down syndrome really is. Some people think the idea of having a baby with Down syndrome is about the worst thing that can happen to a family.  But I can assure you, it isnt. WIth the prenatal screening made available to expectant mothers, the abortion rate followed by a positive in womb diagnosis, about 90% would terminate the pregnancy.  I thought this was a pretty high statistic, but after much research, 90% seemed to be the majourity.  SHOCKING!  We did not have the prenatal test done, if we did, would we have found out?  Perhaps.  Would we have terminated?  ABSOLUTELY NOT!  Down Syndrome children are a miracle.  Chromosomal anomalies are known to be the single most common cause of miscarriages. Historically, about 50% of miscarriages were thought to be due to abnormal chromosomes.  While Down syndrome is the most common trisomy seen in liveborns, it too carries a significant risk of miscarriage. Approximately 25% of fetuses with trisomy 21 will miscarry or be stillborn. so miracle?  I think so!  People with down syndrome are just a little extra.   A little extra enthusiasm, a little extra innocence, a little extra charm. Oh, and did I mention an extra chromosome? The most important fact to know about individuals with Down syndrome is that they are more like others than they are different.  Its hard for me to narrow down the joys that having a child with Down syndrome has brought to me. To be honest, my entire world is more joyful because of Lincoln. I have met incredible people as I have walked this path with my amazing little boy. I have learned life lessons that no one could have taught me in any other way.  If I could pass one unexpected joy onto a new family just beginning this journey, I think I would pass on this...

When you receive a diagnosis of Trisomy 21, whether prenatally or shortly after birth, you learn that your child will take longer to achieve certain milestones. Many people say it is a mourning process that takes place as you realize your child may be late to walk or talk, or read or write, or gain independence. You are immediately launched into a world of predictions when the reality is, there are no predictors for this new baby, any more than there are for any other babies. So, you begin. You read and research and talk to other people. You learn the new language. You sign up for therapies and intervention. And you start to realize that it will be o.k. Its o.k. to take it a bit slower and to meander through the milestones instead of racing through them.  It has been so joyous to see Lincoln move through his milestones a bit slower. He smiled very early but, he took his time learning to walk. He lives in the moment every day. 
So many firsts, and so many more to come. 

Thank you so much for reading!  please feel free to comment!

What people with Down Syndrome are capable of...

  There is no set "severity" of individuals with Down syndrome. The people with it have a wide range of abilities and disabilities. The effect that the extra genetic material has on an individual's development varies widely. The future development of a baby with down syndrome doesnt predict what the future will hold. Some children have few additional health problems and some have serious health problems as a result of having Down syndrome. They all experience some degree of learning disability, with some children progressing within the lower ability range of the non-disabled children in ordinary schools.  They never stop learning. They continue to learn and pick things up through to adulthood.  That being said, each child or adult with Down syndrome must be considered as an individual and his or her needs determined as an individual, taking account the possible effects of Down syndrome on development, but not assuming that Down syndrome alone will determine development.  So keep the goals high!  If a person with down syndrome is capable of writing their driving test, and pass - they get their license.  If they are capable of looking after themselves with no or little help, they can live on their own!  Can they have babies?  Both women and men with Down syndrome can be fertile, although both sexes have a reduced fertility rate. Some people with learning disabilities can successfully parent their children, given the right support. However, many couples with learning disabilities decide for themselves not to have children because of the responsibility and hard work involved, or for financial reasons. Where one parent has Down syndrome, there is a 35% to 50% chance that the child would inherit the syndrome. This chance is even higher where both parents have Down syndrome. .We dont know of where LIncoln will be in the future, but as far as his memory, He is doing very well.  He can do age 3+ puzzles... probably with his eyes closed.  His fine motor skills are the same as the average child.  The delay on him walking and his ability to chew foods is simply a result from low muscle tone, not the functionality of his brain.  Speech and language development is usually the children's area of most significant delay. Most children understand more than they can say and signing is an important bridge to speaking, which is why we really encourage Lincoln to use his signs instead of moaning and pointing to what he wants.  He knows more than 35 signs ranging from eating, sleeping, friends, play, book, school, help, please and thank-you just to name a few. He is quite quick at picking them up.  My brother decided to teach him the sign *poop*, and now, everytime he poops, he grabs his diaper and signs poop - this to me was a sign that he must be ready to start potty training.  nope, he would sit on the potty for 3 mins, get off, poop, sit back on, get off, poop.  So, we're working on that.  Typically, potty training will be delayed as well, but I guess its really on how hard you work at it just as everything else!  I enjoy working hard at our goals. I'm a stay at home mom - what else do i have to do?  besides play with my children, help them learn in the way that learning is possible for them individually, and oh - cook/bake.  Lincolns my side kick.  Even though he wont touch what we bake, (he hates sweets... hes never even tried them, and i am sure if he would just put it in his mouth he would realize how GOOD chocolate actually is!!)  he is really good at adding ingredients and stirring.  We usually have extra chocolate chips in everything:) The development of individuals with Down syndrome is influenced by the quality of care, education, and social experience offered to them, just like all other people.  Children with Down syndrome are children first, with the same social, emotional and learning needs as other children. They wish to be included in the world of childhood in their community and to learn and play with all the other children.  No two people with it are similar - they may have similarities, but are each their own unique person.  Everyone is an individual, so stereotyping them as happy, loving people is just that - a stereotype.  Sure they have those characteristics, but lets not pin point down syndrome people with a *type*.  People with Down syndrome should not be seen as different but rather as people who happen to have some additional needs.  So all in all, people with down syndrome are capable of doing ... anything really.  Time will tell what Lincoln's capabilities are, and we are doing our very best to maximize every opportunity, and will continue to support and encourage him in the future to make the best out of his life!

Re-cap....

BEST FRIENDS

I know I have some new blog readers - as my viewer counts seem to be out of the roof :)  I am so happy that my message and attempt to raise awareness seems to be successful!  For the new readers, I am going to re-cap on our last two and a half years - and for my followers, a summary/repeat as I mentioned would likely happen during my blogging week.  When Lincoln was born on April 18, 2009, we were thrilled to announce to family and friends, 3 weeks early, that we had a boy - although some people knew we were having a boy because my husband really wanted to find out, and I didnt.  We had a 3D ultrasound where the tech told Mike and his family members who were present, that I was carrying a boy.  I thought for sure we were having a girl, and had to ask the nurses twice - a boy?  really?  its a boy?  imagine that, 24+ hours in labour, after he was born, hearing the words "its a boy" and the only thing i said was ... REALLY?... so yes, my husband is really good at keep secrets!  His vitals were good, and APGAR tests scored 9.5 out of 10.  PERFECT! We were in the hospital for 3 days, as he was having a hard time latching, we thought we had finally got the hang of it, but when he wasnt gaining weight for the first 3 weeks of life, i resulted in pumping, and feeding him breastmilk thru a bottle.  The next weigh in, he had gained 2 pounds, and 2 pounds the weeks after.  So, i continued to pump. (crazy i know).  When Lincoln was about 3 months old, He refused the bottle.  Hours would go by, and surely he should have been hungry, but would still refuse the bottle.  I am a google addict.  So i researched it.  What did I come up with?  I do remember coming across one site, where mothers who were having the same problem, and most of them had mentioned health issues.  Impossible i thought to myself, so resulted in more research.  GERD - that must be it... Gastroesophageal reflux disease ...a condition in which the stomach contents (food or liquid) leak backwards from the stomach into the esophagus (the tube from the mouth to the stomach). This action can irritate the esophagus, causing heartburn and other symptoms.  So, I took Lincoln to the clinic, where we only had a nurse practitioner.  She threw my idea about GERD out the window... and insisted that I wasnt waiting for the proper hunger cues.  As a new mom, who do you listen to?  your health care provider... OK - so lets just try this again... NOPE, still doesnt want the bottle... so what did I do?  came up with the thought that, he likes sucking when he is sleeping, so I attempted to put the bottle in his mouth once he decided to sleep (about every 2-2.5 hours)  IT WORKED!  He was drinking 5 oz every 2.5 hours!  perfect!  That lasted quite a while.  And every appointment I had with the nurse practitioner, i would still mention to her that he would only drink when he was sleeping, and she just said he was being silly.  He was gaining weight, and thats all she cared about (or so it seemed).  By 7.5 months, i was tired of pumping, and thought i would slowly introduce formula.  Lincoln would drink the formula bottles, NO PROBLEM... so that was a quick transition.  He still wasnt eating solids by that time, as everything he would swallow would come right back up.  The nurse practitioner decided to book us an appointment with a paediatrition from Peterborough.  Tick tock, tick tock - by 9 months, we had the appointment.  The pediatrition looked at Lincoln and decided to order blood work for chromosomal abnormalities.  She informed me that they range from colour blindness to down syndrome.  She knew the moment she looked at him that he had it, but told me afterwards she couldnt tell me on the spot - which i completely understand!  who wants to break the news that their 9 month old has down syndrome?  now what?  we wait... tick tock tick tock, way too much googling....a simian crease - hmmm, no, not my Lincoln... He doesnt "look" like he has it...or does he? 5 weeks go by... THE RESULTS ARE IN - but we have to go to Peterborough to go over them... yup - obviously theres something they found.  We were then informed Lincoln had been diagnosed with Down syndrome.  She listened to his heart, and thought she heard a murmur... and said we would be referred to the hospital in the future for an echocardiogram.  We took the news, and walked out the door.  I burst into tears.  How could this be? i thought to myself... my poor little boy is going to be "different" his whole life... Did I care?  NO - I personally didnt care.  I cared for LIncoln... and his future.  His future of being in school... and all the kids letting him know that he is different, people making fun of him because he "looks" different.  It was a quite hour and a half ride home, where two phone calls were made in the back seat.  I thought I was fine with the news, until i tried telling my parents and my husbands parents.  When I had to say..."he has down syndrome"  it was very hard. and that was the end of the conversation.  So needless to say, thats all the phone calls i made.  My mom and sister showed up the next day - clearly knowing that I could use the support.  All was ok.  Lincoln was the same Lincoln he was before the diagnosis.  Meh, whatever... I kept thinking about how great all of his accomplishments were going to be.  I really didnt care!  the next day, Lincoln was having a hard time breathing, so i booked an appointment with the nurse practitioner.  When we got there, she grabbed a Dr, and they both sent us to emerge.  X-rays were preformed, and I was just waiting to get out of there so i could go back home where my mom and sister and nephew were waiting for us.  We never made it home.  We took an ambulance to Peterborough because LIncoln had to remain on oxygen because his stats were sooo low.  pneumonia.  ok God... whats next I thought. bad things happen in 3's right?.. so there had to be something else.  YUP... the echocardiogram was preformed ... ASD they told us.  Oxygen levels were low - pulminary hypertention - as a result from the hole in the heart.  WOWOWOWOWOWOWOW. As i sit here and re cap myself on the week of the diagnosis... all I can think is .. that was alot of events .. Thank you LORD for keeping me sane!!  I read a blog yesterday where a mother went through the exact same thing - except when the baby was a newborn.  As I read it, I thought.. man, that must suck... wait a minuite - I went through that, and it didnt suck... God kept us strong, and all thoughts were positive!  Thats how i stay sane.  We were in the hospital for 5 days, and when we got home, we snuggled our little boy just like babies like to be snuggled.  About a month later, we had an echocardiogram booked at sick kids in toronto.  2 holes they say, semi large, but not too large.  Plugging the holes was something they thought was necessary to clear up the pulminary hypertention.  SO - back to my *googling* on why my baby wouldnt eat...a medical problem.  A heart murmur, 2 holes in the heart... and this wasnt once heard by my nurse practitioner?  OK - time to get a DR!  We had a meeting set up with a geneticist, waste of time really... but standard procedure.  She wrote a letter to our local clinic here, stating that Lincoln NEEDS a DR.  not a nurse practitioner.  what a releif - maybe this time my health care provider will actually LISTEN to me!  And I love our Dr.!  ok, so, surgery time.  turns out - he had 3 holes measuring to be 12mm in diameter.  That part of the heart chamber is 5 cm... so more than 1/5th was wide open.  HOLY CRAP!  How was this missed?  I can keep questing myself, or move on... its fixed!  pulminary hypertention resolved.  Perfectly healthy!  Now we were set up with five counties.  Speech commenced, physio thearapy commenced, occupational therapy commenced - and here we are ... on the road to success.  When Lincoln turned 2... what better present to give him than a life long friend, someone to stand by him when other kids at school decide to poke fun at him, someone to encourage him .. a BROTHER!  Parker was born 8 days before lincoln turned 2.  They are already great friends.  Lincoln is tuffing parker up - his favourite thing to do it count to 3 and BODY SLAM him.  Parker doesnt seem to mind as he just laughs when Lincoln does it.  and no, that doesnt mean i let him do it.  Lincoln wants Parker to be as tough as him.  And Lincolns pretty tough, if you consider what hes been through!  We keep pushing Lincoln to reach his goals.  He now walks full time - started when he was about 2.5 years old.  He now eats finger foods, all the time.  NO more purees! (just when the new one started - ok, so no more purees for Lincoln).  What else?  He is in daycare part time - which he seems to LOVE. His teacher is great, and He always has extra long naps on daycare days!  So theyre working him hard too! (and it gives me one on one time with Parker).  With that said, thank you everyone for reading, and encouraging me to keep up with my week of blogging to raise awareness.  I had a hard time thinking of what to write yesterday, although it was a pretty busy day, with babysitting my friends 2 kids, a teething baby, and a toddler who didnt want to nap...it was hard to think of something. I didnt think i could think of anything new to write... so I went to bed wondering what to write tomorrow... a re-cap popped in my head, and here after 45 mins of writing, i have a novel. 2 more days to go... time to get this brain thinking...

wonders....

I always wonder, can people tell by looking at him… Many times people will go out of their way to say HI to Lincoln, all of the ladies at the grocery store just love him, and always comment on how cute he is.  Is this because they can see the DS in him? The anxiety of waiting for a reaction from people is certainly not at the top of the list when we go away, but it’s there and I wonder if that feeling is ever going to disappear.  For the most part people don't give us a second look.  Very seldom do we get approached. We did however,  in line at the zoo.  The lady behind us noticed Lincoln and thought she would share her story.  She also had 2 children, 2 years apart.  Her youngest has Down syndrome.  She asked if we were part of any groups, which we arent because of our rural community, and the lack there of.  She didn't have much to say, but the thought of her noticing Lincoln had it makes me wonder if its just because she is on the same page because they do tend to have some of the same physical features.  The most common type of Down syndrome is Trisomy 21, which accounts for 95% of all cases. In this type of Down syndrome, abnormal cell division results in an extra chromosome 21 in each cell. Prior to or at conception, a pair of chromosomes 21 (in either the sperm or the egg) fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. At present, researchers are not sure what causes the presence of an extra chromosome 21. They do know that it can come from either the mother or the father. In a person with Down syndrome, each cell makes excess amounts of chemicals regulated by the chromosome 21 genes. This imbalance in part explains physical similarities in people with Down syndrome.  Other less common forms of Down syndrome result from other processes occurring during cell division, which result in an extra partial chromosome. 2% to 3% of people with Down syndrome have a type called translocation - which means its transferred genetically and approximately 2% of people with Down syndrome have a type called mosaicism - where only half of the cells in the body carry the extra chromosome.  Even though they tend to have similar features, people with down syndrome still look like their other family members.  

Families that have been touched by a child with special needs are always talking about the glory’s and the beauty’s of their child and how wonderful life is.  I dont mean to repeat myself (although its bound to happen during my week of blogging to raise awareness), but anyone with children will say their life is wonderful, and its true, children are an amazing gift! I've been doing alot of research myself on blogs and information sites to get re educated on facts about down syndrome, and I think maybe I'm thinking a little too much about it.  Our life has down syndrome in it, but our life isnt just down syndrome. What would our life be like without down syndrome?  I dont even want to try to imagine. Its as much "normal" as anyone elses.  We have routines, we have outings, we have talents.  Lincolns talent is music.  He loves his drums and harmonica and play pianos.  He is also quite talented in his communication. He impresses me with all of his sign language.  We live our lives just like any other family, just with a story that interests others. Our wants now out weigh our needs. That is a good feeling. 

Facts....

Parenting a child with Down Syndrome has its challenges.  But many have faulty information about it.  Here are some common misconceptions about Down syndrome and facts you need to set people straight on the realities:

MYTH: Down Syndrome is a rare disorder.  

FACT: Down syndrome is not rare. Approximately 500 babies are born with Down syndrome each year in Canada.   1 in every 800 to 1,000 babies is born with Down syndrome. According to the Canadian Down Syndrome Society there are approx 35000 Canadians with Down Syndrome, and over 5.8 million world wide

MYTH: Most children with Down syndrome are born to older parents.

FACT: Over 80% of babies with Down syndrome are born to women under the age of 35, and the average age of a mother of an infant with Down syndrome is 28 years.

MYTH: Down syndrome is not treatable.

FACT: While there is no cure for Down syndrome, there are many treatments available for the problems associated with Down syndrome.

MYTH: People with Down syndrome have severe mental retardation.

FACT: Most people with Down syndrome have only mild to moderate mental retardation. Individuals with Down syndrome have IQ scores of 30 to 60, but much variation exists. More important than IQ scores is the fact that all individuals with Down syndrome are capable of learning.

MYTH: Children with Down syndrome must be placed in separate special education programs.

FACT: Most children with Down syndrome in Canada are “mainstreamed” into regular schools. They attend regular classes for some subjects and attend special classes for other subjects. Each school system is required to provide the best learning environment possible for all special needs children.

MYTH: People with Down Syndrome will live at home forever.

FACT: A large percentage of adults with Down syndrome live semi-independently in assisted living facilities and group homes. Adults with Down syndrome often hold jobs and have romantic relationships.

MYTH: People with Down syndrome are always happy.

FACT: People with Down syndrome experience a full range of emotions such as sadness, anger and happiness, just like everyone else.

MYTH: Individuals with Down syndrome die young.

FACT: The average life expectancy of an individual with Down syndrome is now 50 years of age.

Many of you might wonder, and so i'll give you an insight, on how to approach/react when your friend or someone you know tells you their new baby has Down Syndrome.  Its very simple.  Heres what you do:

-bring a gift!  your friend just went through 9 months of pregnancy, labour and delivery.  Say "congratulations"  or “Congratulations on the birth of your baby boy/girl!” or “Oh, (s)he’s beautiful!” Then ask to hold the baby (if you can). Just like you would with any other baby. The birth of a child is something to celebrate, and an extra chromosome doesn’t change that. Your friend’s baby is a gift, just as any baby is.

-Having said that, realize your friend might be grieving. All parents have to grieve the loss of the perfect child they thought they were having. With Down syndrome, you know right away that your child isn’t the athletic brain scientist with a model’s body that you thought you were having. But if you accept the baby with joy, it will be easier for your friend too.

-If you have positive experience with Down syndrome (i.e. a cousin or a friend had it, and they did fine/were adorable/whatever), share it.  

-Your friend may be dealing with life-threatening problems (40% of babies with Down syndrome have heart defects, for instance). Here, you might be able to help. Offer to care for other children if they have them. Bring in meals. Visit them at the hospital (and bring food that isn’t cafeteria food). Run errands for them. Ask how the baby is doing.

-Try to get the term correct. It's “Down syndrome,” not “Down’s syndrome” (because it’s named after the guy who identified it, not someone who had it). And it’s a “baby with Down syndrome,” not a “Down’s baby.” I know this sounds really nit-picky, but it’s important. This way, it’s a baby first, who happens to have DS.

-Mostly, your friend just needs to know you love her and that you will love the baby too. She needs to know you aren’t going to run away and hide.  

My story is a little different, but We can relate to most of the above.  Because Lincoln wasnt diagnosed until nearly 1, those who already knew Lincoln knew him for him - not him with a diagnosis.  Telling people once we found out would be a little harder - so I, as a result, decided to start blogging.  Most of the responses we got were positive.  We felt very overwhelmed by all of the uplifting support from family and friends.  Which quickly made us realize that Lincoln was - Lincoln.!!! He still did everything he did before.  He will still have goals for the future, he will still enjoy the zoo, splash pads, have friends, but most importantly, have a family who love him unconditionally. 

What its like....

What is it like to have a child with a disability?
First you must understand that having a child with Down Syndrome is not something terrible.  Its a journey filled with hope, triumphs, joy, struggles, and also satisfactions that will bring out the best in you.  It will make you the best parents of the perfect child for you!! When we found out about the diagnosis, most people go through the entire grief process as they would if a death had occurred. My husband and I are not the norm. Because we found out when he was 10.5 months which isnt common, followed by pneumonia. Maybe that was God's way of not giving us time to react or grieve.  I truely believe that it would be a different story if we had 've found out at birth. How it was missed??  I still question it.  10.5 months of dr visits, weekly weigh ins cause he wasnt gaining weight, wasnt eating, and hitting his milestones slightly delayed... etc, when the first clue was as simple as a single line across his right palm (a simian crease).  I think it was the way God had intended.  I was in labour for 24 + hours, and right when Lincoln was born is when the nurses were changing shifts - so perhaps they assumed the other shift did the *checking* thing.  When Parker was born, they checked him out (same nurses).. I questioned why, and they said it was standard procedure, they check every newborn - ?huh?... not in LIncolns case (in which the same nurses, who knew about Lincolns late diagnosis showered him with gifts and love once he came to meet his baby brother - iteresting....) He was our baby boy, and we love him no matter what - maybe just even more now!  I didnt want to feel guilty about crying so much when we found out.  It truely was a joyful moment! Reading stories about other parents and seeing how much they loved their babies brought me back to the baby inside me. It took my thoughts off "poor me" and back to the cute and cuddly baby I was carrying. Reading about the day to day life that parents on the Internet newsgroup had with their kids helped me refocus on the fact that I had a baby...just a baby...just God’s most glorious miracle.  Lincoln has been attending day care for over a month now... and has picked up so many things since being there (some of which are not "good" things - but at least he's picking them up!!)  They have said he is ready for LONGER days - not just the mornings, cause he is doing so well!!  Not sure i'm ready for that, but he seems to be, so we'll go with it!!  He doesnt get treated much differently.  He is in the toddler room, and there is a special worker present in the room while Lincoln attends, but she doesnt centre him out for the other kids to notice that there is something different about him.  They treat him like their other peers in the class room.  Lincoln might even be a bit of a leader!  I know he's the *newest* one in his class, which tends to draw attention... but so his teacher told me, when he's done doing what the activity is, he'll move on, and yell for the other children to follow him - like - hello - i'm in the book centre now - come!!!  Children with Down syndrome are like all children in their need to make friends, explore their environments, to gain confidence and self esteem, and to learn.  Those who are not parents of children with special needs become helpers to our cause, simply by educating themselves, sharing an article about Down syndrome, educating their own children about Down syndrome, being empathetic, open minded, and open hearted to be able to see the person beyond the syndrome. 

National Down Syndrome Awareness week

Today marks the first day to national down syndrome awareness week.  I am making it my goal to have a new blog post every day to try to raise awareness about how special Lincoln makes our lives!  The thing about Down Syndrome, is that it is not like cancer or diabetes where organizations primarily raises money to find a cure.  You cannot erase an extra chromosome from every cell in the body and therefore, Down Syndrome will never have a cure.  Likewise, it has always existed.  So the National Down Syndrome Society instead, seeks to promote awareness and equal opportunities for individuals LIVING with Down Syndrome.  In my own small little world, i feel Lincoln has all the same opportunities as every other child out there!  Not only has he blessed our every day since his diagnosis, He has also opened up our eyes about what it is like to raise a child with a special need.  What do i want/expect people to do?  CELEBRATE!!  This week is to celebrate the contributions that individuals with Down Syndrome have made and to recognize that they have abilities and ambition like any other!  Raising Lincoln has made us stronger people, and has also made us bless every day with what comes with it!  I have huge expectations for Lincoln, and for that, I work very hard at seeing he meets the goals that I want him to accomplish.  To make him realize, that just because he has an extra chromosome, doesnt mean he can't succeed in what ever his dream for the future may be!!  While our lives have been spent aside hospital beds, Dr. visits, and therapy thru five counties, we cherish every moment and milestone!  We also look at it as a great way to get educated!  Many parents wouldnt understand what it is like to raise a child with Down Syndrome, perhaps they wouldnt even try to imagine, but I can tell you, that Lincoln's diagnosis has changed our lives!  Not for the worse, but for the better!  We appreciate life, and live with a smile on our faces knowing that our son is special.  Knowing about what is expected thru the life of Down Syndrome is exciting!  Wondering when he would start walking, wondering when he would say his first word, wondering what he will do or be like when he gets older - just like every other parent - but with a much more rewarding out come!  We work so hard to hit these milestones.  They might take just a little longer than average, but we hit them!  And when we do... we praise God!  We praise Lincoln, and we praise ourselves!  We did it!  its quite exciting to say the least!  I also like to talk about it.  Some people may feel that talking about a special child is something they like to keep to themselves, but i'm trying to raise awareness - awareness that Down Syndrome is something to be celebrated, not something to be embarrassed, shy, or confused about - which is likely why God chose us to raise Lincoln!

New Adventures!!

What a busy week we have had so far!!  Monday, we just relaxed - to prep for the rest of the week.  Tuesday morning we had speech, physio and OT, along with a case conference with all of the workers and the day care teacher.  Its so amazing to hear all of the positive things they have to say about Lincoln every time we have a meeting.  Lincoln is average for his age with fine motor, His PT is very impressed with his walking skills, and speech says his use of sign language is amazing, and the new sounds he produces means he is only one step away from using words!!  We had the case conference for the day care worker so she would know what to expect from Lincoln, which areas to push him in, and also to get a bit of background as to where he is at.  AND TODAY WAS THE DAY!!  Wake up - 7:20, breakfast 7:45, small play and BOOM - we were off to school.  Since Lincoln woke up,  I kept telling him today was the day he is going to school.  When i asked him to grab his shoes, and after I put them on ... He was hugging the door SO ready to go!  he walked down the garage stairs as I loaded Parker in the car.  Lincoln then had his hand on the car door ready to open it and get going!!  We got to the day care, he walked to the front door - attempted to open it.  Opened the safety gate, and walked in like he had owned the place.  We went for a tour last tuesday, and Lincoln seemed to enjoy himself, and after the report I got from his teacher today, it looks like He is having alot of fun!  His teacher said he did an amazing job playing with the kids, they played outside for about an hour, and Lincoln was having a blast!!  About 45 mins after running around outside - he found a bench, and just observed the other children outside.  He had a bite of a muffin at snack time, and ate 2 pieces of garlic bread for lunch - he didnt want the noodles i guess.  We are really hoping that eating lunch with the other toddlers at daycare will encourage him to eat alone more often - so 2 pieces of gb are a good start :)  To add to Lincolns exciting fun filled week, we are taking him to the toronto zoo on friday - before we head south to my parents for thanksgiving!  Should be a good time - he LOVES animals!!
Thanks for reading!!  and Happy Thanksgiving!!

growing up!!

Its only a matter of time until we become a full time walker!  Lincoln walks almost full time but still falls quite a bit.  I love his own encouragement that he just gets back up and continues walking to where it is that he is going!  We have longed for this day to come - and now we cant stop telling him to sit down.  What a climber!!  He knows when i walk back to the bedroom to put Parker down, that i will be gone for about 45 seconds.  In the 45 seconds, Lincoln will be from reading books on the couch, to sitting on the kitchen table drinking my coffee.  Man oh man, gotta watch him like a hawk!! He has started taking finger food in too, which is a relief now that Parker is starting solids.  I would never know what a warm dinner tastes like :p  And he seems to be doing pretty good!  And soon, I feel he will be changing quite a bit!  He is starting day care part time in October, which will be good for him.  He just loves watching other kids, and playing with them! His communication is getting pretty good (with sign language still) .  He says a few words, like hi - when someone walks in the door, or bye when you're leaving, wow, ouch, wee, da - and almost daddy, mom and a few more. He doesnt talk much, but he sure knows what he wants - dont dare bring out a bag of chips if you dont intend on sharing with Lincoln!  HE LOVES CHIPS!  and the more flavour, the better!  If you want him to sit still for about 10 mins, give him a  dill pickle chip, or all dressed!  he licks all the flavour off, then enjoys the crunch!  he wont even eat plain gold fish any more.  it has to be the pizza explosion flavour.  He has also pretty much given up his naps, which i guess im lucky Parker sleeps through the night, so I dont have to nap anymore - although a little *me* time during the day would be nice too.  Lincoln loves his little brother so much.  When he wants to hold him, he will sign to me either "brother please" or "baby please"  He hugs him, and kisses him, then passes him off.  Its so cute.  Other than that, not much else is new.  We have pretty much had the summer off as far as appointments because most of his workers took the summer off.  So speech and physio and occupational therapy will start again soon this month - and we'll see him sky rocket after daycare im sure!!
Thanks for reading!

finally - the time we've been waiting for!!!

I realize its been a long time since I have last blogged, but I didnt really have much new to update - but NOW I DO!!  Last week, I took Lincoln to the dentist for the first time (which i'm happy we have a dental plan because it seemed like a waste of time).  Seeing as we chose a dentist located in Alliston, we figured, why not go on a mini vacation ... and spent the week with my parents, and at my sisters place.  We got so much visiting in, and Lincoln got to play with many kids his own age - and just absorbed, or so i presume because by the end of the week, Lincoln was walking!!  On sunday we went to my sisters house until we left to come back home on Wed.  My sister has a baby girl Parkers age, and an 19 month old.  They had so much fun together, by the end of our visit, Lincoln was taking many more steps!!  As we sit in the house today because it is scorching outside, Lincoln has been walking way more than his mowgley crawl :)  How exciting!  I kept telling our physio therapist that we hoped he would be walking before our exciting wiggles concert next wed. - and here we go!!   I'm sure he wont be walking everywhere, but its just a matter of time until his muscles get used to the new movements, and I will no longer have to carry 2 children every where i go!!  (i'll have to work out now to keep my biceps lol).  He is making more progress in speech also.  He will say hi to you when you walk in the door, and say bye to you when you leave.  He understands everything i tell him, and he is communicating very well using sign language (though he sometimes gets confused because i try to teach him a new one every week, and some are quite close... I still understand what he is saying.)  His favourite thing to sign is please.  Everything is please.  its cute.   Not too much coming up in the future, except more milestones, and progression on Lincolns part!  Keep up the great work little man, you are making us ALL proud!!!

we've added a new member!

Hello,
I realize its been a reallly really long time since I have blogged last, but I have been super busy, as you can imagine - with a new member to our family!  Parker Brian Holden was born on April 10, 2011.  A very different delivery than Lincoln - much quicker!  He was born at a healthy 6 lbs 9 oz.  Everything has been going well.  He is breastfeeding quite well - which is a relief - I can retire my pump haha.  Lincoln loves his new brother, and really enjoys giving him kisses and holding him for a brief 5 seconds here and 5 seconds there.  Since Lincolns surgery, he has not snored anymore :)  His hearing has improved (not that we thought he didnt hear well, but so they say).  We had our follow up appointment last week - and the ENT specialist says that everything looks wonderful!!  Lincoln's paediatrician appointment yesterday put him on the scale at a wopping 30 pounds - thats 30 pounds in one arm, and a car seat and a baby in the other arm that I have to lug everywhere I go, which doesnt really bother me - I call it my workout!  Lincoln is now 2 years old - and starting to act like it.  Weather its jealousy from having to share his mommy, or the terrible 2's im not sure, but at least he's getting better.  He has learned quite a bit of new sign language, and is quite capable of understanding everything that I have to say.  He communicates very well using the signs that he knows!  Still no words, (except that ONE time - i swear I heard him say BALL).  His walking is progressing - slowly, but surely.  I was walking out to the garage one day, and turned around to see lincoln following me on his feet!  It was about 13 steps - and then he turned around and walked back to his dad.  But other than that, its just 3 or 4 there, mostly with encouragement.  He will get there soon enough (hopefully sooner than later!!) Otherwise his mowgly walk is his mode of mobility these days (hands and feet walking) Its quite amazing how fast he is - except he doesnt look up when he is doing it, and can often be found running into walls :(   Lincoln's paediatrician also stated at our last appointment that he was a very bright child with Down Syndrome - which Mike and I already know, its just nice to hear it from the Dr.  Other than that, not too much else is new with the Holden Family.  This is just a quick update I skipped my nap today to blog - time for a coffee, thanks for reading - maybe I still have time to get my nap in (ya right)

quite the trip!

Well, that was quite the experience let me tell you!!  It started with 20 minuites to make our decision on Mikes birthday, to the quick packing job I did, lame Toronto traffic at 6 am the next day, to handing away our smiling baby boy not knowing that was the last time we would see a smile for a few days.  We made our treck to Oshawa on Wed. night for our 7:30 registration at sick kids on Thursday.  We left at 5:50, and didnt make it to the hospital until 7:50 - we were late.  stupid traffic.  But it didnt matter.  We registered Lincoln, and then headed up to the 6th floor, where the surgery would take place. We met with the surgeon where he explained that they would be putting him under an anesthetic, and removing his tonsils, adenoids, and putting tubes in his ears.  We then met with the anesthesiologist who informed us again, that his risks were minimal from his pulminary hypertension!  yay!.  We then handed Lincoln off to a nurse at 9:30, while he was smiling and blowing kisses to us waving good bye.  Man, i am glad i could remember his face before he went it.  We were then escorted to the 5th floor to a public waiting room FULL of other parents waiting for their childs surgeon to come in and give them the great news that it was finally over.  1 hour later, we got the news!  it went well, he was awake and in a room being monitored for sleep apnea.  We would be able to see him shortly!!  We got into the room where Lincoln was, and he was crying, being drowsy still from the knock out drug.  Trying to comfort him was next to impossible, which only brought more tears to my eyes... he was NOT a happy camper :(  We then got brought to an observation room where we would be spending the night - our 4X4 curtain inclosed cubical which we didnt know, but would be our living quarters for the next 4 days.  Lincoln was hooked up to an IV for fluids, so he wouldnt get dehydrated.  The foom was full of other children and their parents - there were 5 other beds in our room, all full.  So, this was something completely different from the last time we spend the night at sicks kids.  Then, got informed that the chairs we were sitting on, at our childs side - were, yup, also our beds.  Did they recline?  nope.  hang on here... let me get this straight... only one parent gets to spend the night?  in a public room? on a chair? while i'm 8 months pregnant? and the closest washroom is way down the hall?  oh boy, this is going to be a LONG night.  Luckily they let Mike stay with me, because of me being pregnant and all.  My friend works on the 7th floor, and came to visit us when her shift was over.  She asked the nurse if i could get a cot, but the nurse wouldnt budge because it wouldnt be fair to the other parents who had to spend the night on chairs as well.  At 11:00 when everyone else was sleeping, the nurse grabbed me, bent some rules, and brought me to my own room where I would get a couch bed.. Thank goodness.  As I laughed to myself.  I was sooo happy for this couch bed. In my last blog, did I not complain that it would be a couch bed?  When morning came, I woke up and was reunited with Mike and Lincoln, thank goodness it was only a one night stay surgery! - or so we thought... As we watched the other parents and their children leave slowly through out the day, we could only keep trying to get Lincoln to drink something.  The nurses kept him on morphine and tylenol at least every 4 hours, and had his IV producing so much fluid, he was getting more wet diapers than he would at home during a regular day.  The morphine was making him soo sleepy, all he did all day was sleep.  We couldnt go home. BOOO.  For those of you who know Lincoln, he is a super picky, i only eat the way I want to eat and drink.  Only my mom can feed me, and i have to be watching my favourite show, or reading my favourite books while doing so.  GREAT - we're never going to get out of here.  I asked the nurses to stop the morphine so we could have him awake to try and get him to drink, and also told then to try turning down his fluid intake, as he was likely not thirsty judging by how many wet diapers he was getting.  Neither worked.  He stayed awake, yes, but was still NOT happy. (but we knew it wasnt because he was in pain, so we kept him off morphine).  That night, we had a new set of kids and parents to spend the night with.  this time, only 3 other beds were full.  We also had a different set of nurses.  I got a chair, for a bed, and had to BEG for a pillow.  longest.night.of.my.life.  impossible!!!  the next day, same deal, he just wasnt thirsty.  |GOODNESS - please people, beleive me when I tell you, he WILL drink at home - he hates public places, not only that, every time he saw a nurse he would scream - he knew they were going to attack him again some time soon with more drops for his nose, ears, and more antibiotics and tylenol. :( .  finally Lincoln started eating cheerios, and having a small sip of fluids here and there.  The Dr. came in, and we told him our situation, about being in a public place, and he said we could go home the next day if Lincoln did what he did that day (eat cheerios and drink a bit of water).  We watched the room empty up again, and prepared ourselves for yet another night of a chair bed.  Hang on, the room was empty, there was 6 beds, a new set of nurses... if they put me in a chair, then, ... well, i knew they wouldnt.  YES ! I got a BED! but poor mike, had to stay on the chair again.  The next morning, we were let go!  FINALLY - nothing was better than hearing that our discharge papers were on their way!! WHOOO HOOOO!!!  home! (or out of the hospital at least)  Lincoln and I have decided to stay in Oshawa for the week to be closer to sick kids in case he started bleeding out (which in 1% of cases happens between day 5 and 10 - when the scab falls off).  Nothing yet, and its been a week!  Mike is staying with us in Oshawa for the weekend, and we will head back on Sunday - and I cant wait!!!  Today seems to be the day that Lincoln is completely on the mend.  He has eaten more today alone than he has in the past week combined!  yay!!  the Dr. said he would have a nasty taste in his mouth for about 2 weeks, so that likely has something to do with it.  But it is a nice releif!  On another happy note - my sister had her baby today!  what a good day!
We go for a follow up hearing test in 6 weeks, and remain on antibiotics for 2 more days.  things seem to be going pretty good, and it is so nice to see our special little Lincoln smiling at us AGAIN!!!
I realy didnt think that this surgery would be worse than his heart surgery.  But it was.  Recovery time for heart surgery - 2 hours, literally (and an over night stay).  Recovery for this surgery? FOREVER - for Lincoln and mom and dad.  Hope this is it!!

thanks for reading
4 weeks remaining until our baby is due!  yay!

-The Holden's                              

Tonsillectomy & Adenoidectomy

Well, as we celebrate another birthday for Dad, it seems some what the same as last year.  We were leaving the hospital last year once pneumonia cleared up, and this year, we are headed to the hospital in preperation for tomorrows tonsil and adenoid surgery.  Poor Mike, at least his attitude is good saying its just another day. (and at least he doesn't have to work lol).  I got a phone call today from sick kids saying they had an opening tomorrow to do the surgery - WOW, short notice - hello - i live in Haliburton, not exactly around the corner from Toronto... so i phoned Mike to see what his thoughts were.  We decided that now would be the best time if any - before our hands are TOO full with another baby.  This way I can put all my time towards Lincoln while he is in pain and recovering (at home) for the next 10 days.  I have phoned my mom to come and hopefully help do my housework, so we'll see if she's up to it.  They let me know that they spoke with the cardiologist prior to booking Lincoln in, and his pulmonary hypertension is not a concern anymore with an anesthetic. (few) That was my biggest concern.  Hopefully he will recover well, and we wont run into any other complications.  The surgery is a one hour procedure, where they will also be putting tubes in his ears to help the fluid drain properly so he doesn't have much hearing loss (now his hearing loss is mild so they say).  And we will be spending one night - we'll see how much sleep I get in a couch bed in a hospital room - wonder if they have more options...seeing as i'm 8 months pregnant. lol.   Well, heres to hoping everything goes well tomorrow, and Mike has a better birthday next year!
Thanks for reading!


-the Holden's

how fast a year goes!!

well, time is just flying by!  in only 51 (or less - fingers crossed) days, Lincoln's baby brother will be here - and i'll tell you, i sure am ready!!!  Lincoln seems to be getting ready too, as he took his first steps yesterday without holding anything!  He is even doing better and taking more and more today!  Thank goodness because he is HEAVY!!  only a matter of time now that the soles of his shoes will get dirty :)   Physio starts again on friday, same as speech (well, speech was supposed to start last week, but Lincoln was sick:( )  and i think i'll request sessions more often.  The last physio appointment we had was Dec. 03, and since then, Lincoln has mastered the Mowgly walk, standing up alone, and now taking steps!!!  its time to get moving!!!  Last week we had an appointment with an ear, nose throat specialist, because i've noticed Lincoln starting to snore a little bit - and occasionally stop breathing for a few seconds while he is sleeping.  The Dr. noticed he had very large adenoids, and very large tonsils... he also noticed he had fluid in his ear just sitting there.   So i am likely getting a phone call this week sometimes regarding an appointment time at sick kids to have these issues addressed. We arent having a hard time with this decision,  maybe because he has been through so much already, that getting his adenoids removed is something *normal* for children at his age.  So i guess we will be back to sick kids before the year is up, but THEN, hopefully that will be it!!!  I have titled this blog how fast a year goes, because it was one year ago on March 02 that we found out Lincoln had down syndrome.  But as i mentioned in my last blog, it had been the best year of my life!!

that time has come again....

Well, its been about a year since blood work was ordered for chromosomal abnormalities, so i suppose it was about a year ago that our lives some what changed and our trust in doctors grew (though we didnt want to admit it at the time).  When I think back to 2010, i cant help but think of how strong my husband and I have been - with all that we went through during a short amount of time... I still to this day read my first blog entry and cry (maybe because of my hormonal imbalance, but still).  I cry of happy thoughts, and memories that brought my husband and I not only closer to eachother, but closer to our special little Lincoln.  From blood work, to the results on March 2, to the pneumonia that came only 2 days after finding out he had down syndrome, to the hole in the heart that came only 2 days after the pneumonia, to the heart surgery that came 2 months later.  It seems like quite a bit to have to go through in such a short amount of time - but thanks to God, family, friends, and our trust in doctors, we stayed stronger than I ever thought we could!  Which amazes me to this day.

On a better note, we are headed back to sick kids on friday for a 6 month post op check up (even thought its been 8 months) to receive more good news!  Seeing as things tend to be progressing at a rapid rate with Lincoln these days, I'm sure the plug must be doing its job properly :)  He started standing alone - and getting there on his own!  Its only  a matter of time now that he will start walking!! YAY!!  even though i'm sure lugging his 26 lb body everywhere i go is helping me not to pack on the pounds with this pregnancy like i did with Lincoln... it sure is tiresome after everyday!  He got spoiled at christmas by all our families, and we've had to re arrange and designate a special room in the house just to store his toys - its insane!!  now my front room looks like toys r us :S  lucky little guy!  His favourite however is his ball tent - my least favourite of his is his ball tent.  A blow up tent that consists of 250 balls, which get thrown out ALL THE TIME!  It was Uncle Wes's way of starting the torture... even though if a drum set decides to come our way, i will build a shed outside for it, lol.  Other than that, He still isnt saying anything except for BOOO and MOOO and OOOO.  He points at everything that we know he know the words to, and uses some form of OOO to try to say it, its cute.  A dog for example is OO OO OO (for ruff ruff ruff)  santa is O O O (for ho ho ho) ... the best is when he is playing with his farm animals... when he sees the cow, and bursts out MOOOOOO :)  Speech starts again this month sometimes, so hopefully we'll find ways to widen his vocabulary a
little... OO OO OO :) lol. 

We hope everyone had a Merry Christmas, and all the best in the New year! 
thanks for reading!!