Thursday, October 30, 2008

October: Down syndrome Awareness Month (Post #17)- If Hospital Walls Could Speak

I  was just up at the hospital to pick up a prescription for Reid... and as I came up over the hill and began looking down at the lights of the hospital, I was flooded with a thousand different feelings, moments, and experiences that that hospital held for me within its walls. And that's just me...just imagine how many others, it is really powerful when you think of it. So many stories are held within its walls... stories of birth, and hope, but also heartache, and grief. Next to church, I would say it is where most prayers are lifted up. A place that even those not accustomed to prayer find themselves on their knees. I know I have done my share of praying within it's confines.

When I saw the lights tonight I focused in on the room that I knew to be the one Reid stayed in after his heart surgery in August of 2007. Sobering really. I was reminded of the kindness the doctors and nurses bestowed on us...and the plastic walls of Reid's crib which were plastered with pictures of him and his brother, Toby and I loving on him, and of his little friends that he had made in his 7 1/2 months of life. I was reminded of the day he was born, same floor just different wing, and the anguish I felt after hearing the news that they believed he had Down syndrome. I remember both Toby and I nearly buckling to our knees when our cardiologist who after going over Reid's heart condition and drawing diagrams began to leave the room, but decided to open the door again and stuck his head back in to say, "Congratulations". We hadn't heard that except from family...not yet, and tears began to fall. It is very fitting actually that Dr. Loo is in the heart business, he has a HUGE heart himself. You can't imagine how much we needed to hear that.

As I continued on my way tonight to run my errand, I saw the children's wing that has been under construction for quite some time and drew my eyes to the area where I knew a very special beam was placed...a beam I had signed in honor of our family and the doctors who helped Reid through surgery. It was the last beam to be placed and the hospital asked for the community to come out and sign it...we had great reason to participate as we had just brought Reid home after a 2 week stay to repair his heart. I am so glad we took the time to do that, I will always look in that direction and know that under all the plaster and paint...that steel beam has our names on one else would of known that unless I shared it...just another story that hospital holds captive.

I parked and scooted up the stairs toward the pharmacy but not before taking in the spot where the picture that is posted was taken. The morning of New Year's Eve 2006 we were bringing our baby home to continue our story (and yes...sorry east coast visitors those are indeed flip flops in the dead of winter). Our story is now 22 months in the making...and as the story goes it looks like we will make another extended stay at this particular hospital in late November or early December for heart surgery #2, one that was not anticipated and certainly not welcomed, but Reid's little body is deeming it necessary so we must.

As I write this I have two friends who have their sweet little girls in the hospital, Presley... who is fighting pneumonia and Zoey who is fighting a childhood enemy, leukemia. I ache for them, the only chapter in your child's life where a hospital should be included is the first chapter...of birth. We could do without the rest, most certainly the moms of these precious little ones would agree! Please click on their names to find your way to their blogs and...please pray for them as their stories continue to unfold. 

October: Down syndrome Awareness Month (post #16)- Yikes running WAY behind in my posts! is the 30th of October and I am feeling like I have fallen very, very short in trying to post 31 days for trisomy 21.... although if you read my post #1 for October I knew 31 would be a stretch for me this year so I had committed to only 21 in honor of Reid's extra 21st chromosome this time year I'll do all 31! So, I am going to be up all night if I have to... come on 21... This counts as a post right?? come on people work with me it is getting late!! :) I'll add a picture to "cutesie" it up. If I didn't know better I'd say they were laughing at my blog! :)

Sunday, October 26, 2008

October: Down syndrome Awareness Month (post #15)- Sleep Apnea

Oh to be able to sleep like this again...anywhere, anytime!!

Though I don't believe Reid has an issue with sleep apnea, after reading about the incidence in children with Down syndrome I am definitely going to bring it up at our next appointment with his pediatrician. Actually,  I read that most parents don't even know that their child suffers from this. I one of them?

According to Babies with Down syndrome-A New Parents' Guide, sleep apnea occurs more often among premature babies, babies with certain medical problems, and babies with Down syndrome. Among babies with Down syndrome, sleep apnea is usually due to upper airway obstruction. The upper airways can be obstructed by large adenoids, large tonsils, large tongue, or a combination of the above. Symptoms include noisy breathing, temporary
stopping of breathing, fitful sleep, and snoring. Children 
with these symptoms have difficulty in draining fluid from the middle ear to the throat, and more importantly, have decreased oxygen levels in the brain, lungs, and the rest of the body during sleep. It is recommended that children who experience
 these symptoms have a consultation with an ear, nose, and throat specialist.

Yikes, one more specialist for me to visit. I have been meaning to make an appointment but have not felt the urgency since Reid luckily has not had much to battle in the way of ear infections, fortunately. However, lately I have been hearing a lot about "Sleep Studies" done to determine whether their child has sleep apnea, and also heard of many having their child's adenoids 
and tonsils removed...and now it is all making sense to me. Okay, so just because this is Down syndrome awareness month, it doesn't mean that I can't be included in the gaining more of an awareness myself! So, this post was for me I suppose so I would be forced to learn a little bit more about this issue and to force myself to make that ENT
appointment. also gave me the opportunity to post these sweet "sleeping guy" pictures! 

October: Down syndrome Awareness Month (post #14)- Some books on Down syndrome

I wanted to use this post to share some of the books on Down syndrome that have been helpful to me so far along this path. But, first I must share a story with you about a book from the Jigsaw Jones Mystery series....

Luke has become an avid reader since entering the first grade and loves "chapter books". This last week he picked up one of the books from the Jigsaw Jones Mystery series from his school library. We began reading it but really didn't get too far. Luke announced Thursday afternoon that his book needed to be returned Friday morning and he wouldn't be able to check it out again until after a week (school policy I guess?!?), so, "Mom, we HAVE to read it TONIGHT!" is what I was told. Anyway, Thursday turned out to be quite a busy day and before we knew it the day had come to a close with both Luke and I falling asleep in my bed watching TV...without reading ANY of his book. For some reason I woke up at about midnight, checked in on everyone, and began checking in on some of by blogging friends. Still up at 1:52, I heard little feet coming out to the family room...Luke had woken up and was trying to tell me through tears and squeaks in his voice that we forgot to read his book. I tried to explain that there were 11 chapters in the book and that we were only on chapter #4, so there was NO WAY we would be able to read it all! But, the tears continued to fall and the look of disappointment was just too much for me to bear. So, I told him we would try reading to see how far we could get. It was 1:52 in the morning for goodness sakes so I thought I'd read a chapter and my sweet one would be sound asleep again. Never underestimate Luke! He dried his tears and became bright eyed as we read....EVERY chapter in that darn book! Yes, we defeated all odds and I surprised myself by becoming a speed reader and sped through the seven chapters that remained! At 2:36 I tucked Luke back in bed, who was clutching his book and had a smirk of satisfaction on his face at this wee hour of the thrilled that he could turn his book back into the library, FULLY READ! As for mom...well I was dragging all day Friday but had a smirk on my face as well...savoring the fact that these are the little moments in parenting that you don't forget.

Okay, now for books on Down syndrome that I have found to be great... I know there are many others out there that I may not list or be aware of, so if you are reading this post and have a book that you would like to share about, please do so in the comment section for us all to benefit from! :)

Babies with Down syndrome A New Parents' Guide. This was the first book I was given by my mother-in-law and I found it very helpful. I later received quite a few copies and started giving the extras to family members...who later commented that they appreciated having the book as well so they had a better understanding what Down syndrome was and how to better support us. 

Gifts: Mothers Reflect on How Down syndrome Enrich Their Lives. Every parent with a child with Down syndrome needs this book, but especially brand new families, as it offers such hope and encouragement!! This book was again another one given to me by mother-in-law. She, who is a labor and delivery nurse, has since bought numerous Gifts books and keeps them on hand in her locker at work. Every time a new baby with Down syndrome is born in her hospital, the family is gifted this very special book from a "grandmother" who all too well knows the heartache and joy that comes with these sweet new ones!!

Books on speech, occupational therapy, and physical therapy related topics that I like are; Communication Skills in Children with Down syndrome by Libby Kumin, Gross Motor Skills in Children with Down syndrome by Patricia Winders, and Fine Motor Skills for Children with Down syndrome by Maryanne Bruni. 

Other great books; Road Map to Holland by  Jennifer Graf Groneberg, Expecting Adam by Martha Beck, Being the Other One by Kate Strohm, and Count Us In by Jason Kingsley and Mitchell Levitz

Wednesday, October 22, 2008

October: Down syndrome Awareness Month (post #13)- How will Ds affect Reid's toddler and preschool years?

How will Down syndrome affect Reid through his toddler and preschool years? 

In post #3 I addressed the question I have received many times which is; How will Down syndrome affect Reid? I had mentioned I would dedicate several posts during October's Down syndrome awareness month as to how it may affect him at different stages in his life the best I could, because of course Reid will be the real author of each chapter. As we are currently in the toddler years his days consist of therapy 3 days a week...but also doing fun stuff with our parks and recreation program, play dates, play dough, coloring (well kinda), swimming in the
backyard, wrestling with his brother....just "normal toddler guy" stuff! We will receive services through the regional center for his therapy needs until Reid is 3 years old, at which time he will be turned over for lack of better words, to our local school district and receive any therapy he may still need through them. The school Luke attends actually has a special day preschool where Reid could go 5 days a week starting at 3 years of age. MWF he and any friends with special needs would attend class with typical children from the neighborhood and on T/TH only he and his special needs friends attend for more individual attention. I like the theory of this program. 

However, when I think of preschool options for Reid...I think back to night #2 after his birth. Obviously I was still in the hospital and the nursing staff was kind enough to transfer me to a private room so I could process everything on my own. They actually did not have any private rooms for me so they gave me one of their shared rooms but promised not to put any other mom in there with me. Toby didn't want to leave so he...and Luke... actually slept in that other bed which technically they were not allowed to do. After visiting hours were over they would pop on the other bed and swing the curtain around them so the staff was none the wiser. When a nurse would leave, Luke would pop his head out from around the curtain and ask, "Is she gone mom?". Anyway...I kind of reminisced there, but wanted to paint the picture. So, all of us were in the room, Toby and Luke snuggled in the other bed hidden away when all of a sudden I woke up at about 2:00 am with this ache in my heart and thoughts swimming in my head  and I began to sob, and sob...I was so upset because all I could think about was that Reid would not go to the preschool that Luke was currently going to, that we loved so much. I couldn't get the images out of my head of Luke hyperventilating every time we pulled into the parking lot of the school because he was so excited to be there and flinging his seat belt off only to shout out to his friends who were also just arriving. I was still so new in this journey with Down syndrome that I believed Reid wouldn't have those same experiences. Luke had a crush on a little girl in class at the time and I cried because I wondered if Reid would have a crush. I cried, and I cried, and I much and so loudly apparently that a nurse came in the room and turned on the light..and we were "found out" so to speak because of course Toby woke up too... thank goodness they didn't slap a bill on us for that (it's about the only thing they didn't bill us for!!). Toby and I stayed up for a few hours talking, the truth is we really didn't know what to expect for our child because we really didn't know anything about Down syndrome.

Fast forward nearly 22 months and you have the pictures in this post...little Reid (standing ALL by himself) checking out duck eggs at the the nature center and looking at cockroaches in that log thingy...and playing drummer boy on plastic tubs in class... he gets so excited being there...a similar excitement I cried about, worried he wouldn't experience. He may not have a crush on
 anyone in particular but that is because he spreads the love, smiles, and kisses to everyone. And as for preschool........................ I am so excited to say he is on the waiting list for the typical preschool that Luke went to. Will he go there? Perhaps. I think it would be good for him and his therapists agree that he would thrive in that environment. But, I also have my eye on 
another typical preschool that is so developmental and hands on that I may try that first with him....who knows, the options are a plenty...too bad I didn't know that on night #2 after Reid's birth... I could have used the extra sleep!! :)

Tuesday, October 21, 2008

October: Down syndrome Awareness Month (post #12) - Check out this CD promoting Down syndrome awareness!!

A new CD promoting Down syndrome Awareness is available today...October 21st, 2008!!

I found this article below about a new CD available in stores today promoting "awareness" for children with special needs. I love the story behind this musician's work and love that his back up singers all have Down syndrome!

Chicago-based musician Leonardo, is hoping his newest CD, Makin' Waves (October 21, 2008; Dune Disc; $12.99, run time 40:33), makes a big splash in the kids music world, but not for the reasons you might think.

In honor of his younger brother Mario, who has both Down syndrome and autism, every song on the album features a chorus of teens who have Down syndrome. Leonardo said that in recording the CD, it seemed natural to use some of the material from his performances for kids with special needs and even more important, to invite them to perform with him.

Leonardo has always been a musical advocate, performing at camps and fundraisers for to raise awareness for children with special needs. The release of the CD coincides with Down Syndrome Awareness Month, which is held every October.

During home recording sessions, Leonardo noticed that his brother, Mario, who is not usually very vocal, was eager to participate. The recording of his first CD, Parents Choice-award winner Makin’ Lemonade, became a family affair, with Leonardo’s young cousins singing backup, while Mario contributed chicken clucks and bee buzzing.

According to the National Down Syndrome Society, Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

To learn more about The CD Makin' Waves visit Leonardo's

Sunday, October 19, 2008

October: Down syndrome Awareness Month (post #11)- Mr. Lovey

Reid was being awfully quiet playing in his room so I went in to check on him and this is what I found...Reid had this picture frame up to his little lips and he was kissing it. It melted my heart because the picture is actually of Luke and I when Luke was just 1 year old. Reid recognized us in the picture, or at least I'll indulge myself into thinking that, and so gave us some love! My little guy is like that...he is such a lovey and gives kisses all day whether it be me, a stuffed animal, a therapist, his own reflection...or a picture in a frame.

I had a friend ask me the other day if Reid's sweet, loving disposition was Reid or was it the Down syndrome? My answer was it is Reid. 

However, it is often said that individuals with Down syndrome are such loving, accepting and happy people with huge hearts. I heard that a lot when Reid was first born and I know it is a stereotype but you know was comforting to hear that, and it still feels good to hear it. I appreciate their words, yet I know that each child is an individual and who knows Reid may end up being ornery as all get out :)...somehow I doubt it, but it will be fun to see him develop into his own little person. For now his limitless kisses, smiles, and giggles just tickle me and bring us so much joy!

But for research sake and for this Down syndrome Awareness post I searched the Internet to see if I could find anything to support the stereotypical statements. What I found, as you may have guessed, is that for more than a century the idea of particular personality/behavioural characteristics being associated with people with Down syndrome has been explored... but with inconclusive results. 

My conclusive results...we are blessed by ALL of our children no matter what their temperament or personality because they are ours to love no matter what! 

Friday, October 17, 2008

October: Down syndrome Awareness Month (post #10)- Low immunity with Ds

All is well again in Luke's world. He survived the flu shot trauma as I explained in post #9. He opted for the flu nasal mist after all instead of the shot. He did great! But poor little Reid, he didn't come out of the office unaffected. He left with two tweety bird band aids, one for each leg as he had to have some immunizations today.

I had mentioned that we all needed to get the flu shot around here to help protect Reid. For those that are not familiar with Down syndrome, one of the characteristics is a low immune system, making individuals with Down syndrome more prone to infections, respiratory infections being particularly worrisome. A respiratory infection is usually a viral or bacterial infection of the nasal passages, throat, bronchial tubes, or lungs. Because they also have low muscle tone it makes it difficult to cough productively or handle oral secretions. Respiratory infections are more often seen in children who also have congenital heart defects and complications like congestive heart failure and excess fluid in the lungs. Reid has been hospitalized twice for respiratory infections and coupled with his own heart complications we need to take every precaution to make sure we keep him as healthy as possible. 

I have added a picture of the two boys playing Nintendo DS after their outing to the Dr. office...neither look worse for the wear! :)

Thursday, October 16, 2008

October: Down syndrome Awareness Month (post #9)- The flu shot

Note to self: Don't tell Luke that he will be getting a flu shot today right after you are trying to get him dressed and off to school in time!!

Oh boy, we had a melt down in our home this morning. The last few years we have been very concerned about the flu season because of Reid's low off Toby, Reid, and I went to get our flu shots yesterday. Without Luke knowing it I had made an appointment for him to get one as well, for after school today. But, for some crazy reason I decided to inform Luke of this this morning just before heading off to school...gulp...and we were already short on time, which didn't make things any better!!! Immediately after I announced the word "shot" Luke went into hysterics, tears, body shaking...the whole nine yards. In an effort to calm him down I told him that maybe he could get the nasal spray mist instead of the shot. He proceeded to ask, in a shaky little voice, if it hurt? My response started as a naive..."Not really, it just kind of feels funny..." when I could see Toby flagging me with his arms and doing the "cut it" at the throat he could see that that was not helping matters by any means! Oh dear...well, we managed to get him off to school just in the nick of time....with him quizzing us on more details he could expect later this afternoon... the whole way there. Poor little guy! Enticing him with lollipops and cute tweety bird band aids don't do it for him anymore!!

But, in the name of protecting little Reid he will endure...begrudgingly though!

Monday, October 13, 2008

Dedicated to new parents!

This post is dedicated to all the brand new parents of babies with Down syndrome who happen across this blog...

A few days ago I was so excited to receive a comment on my blog from a brand new mom Rachel, who had just given birth to her sweet little son Stockton, three weeks prior. Stockton was born with Down syndrome as well as a heart defect. She and her husband did not know until he was born...and so of course her search began to find as much information as possible. Gosh, I so remember being there. I am still there actually, but I can remember so vividly the early weeks and months...fraught with so much emotion. Rachel had been searching for information on raising a child with Down syndrome and happened across my blog, from thousands of miles away. I am honored that after perusing a little while and learning about Reid she decided to leave a which completely impressed me. She was wondering what I wish I had known when I was at the place she is at...being 3 weeks new into mothering a child with Down syndrome. Wow, I thought that was such a wise thing to ask!! Below is my response to her in an email, but I would LOVE it if anyone reading this blog wouldn't mind adding your 2 cents in as well, as to what you wish you had known back then whether from the perspective of a mom, dad, grandparent, aunt, friend, or however you have been touched by the diagnosis. No matter how many months or years we are away from those initial words, "Your child has Down syndrome" we all remember the blow we felt and the heaviness those words brought at first, so I am hoping that those of us who have walked a few steps ahead in these shoes can bring encouragement to Rachel and to Lisa who also just gave birth to her first child, baby Nolan, and to any other new mom who has been told about their child's extra 21st chromosome!

What I wish I had known when Reid was just a few weeks old...
That he would be invited to birthday parties!!! That honestly was one of my first thoughts..."What if no one wants to invite him over to a birthday party?" Well... our little guy has already been invited to 8 and he's not even 2 years old yet!! :)

That my days won't always consist of Dr. appointments (seems I was always carting him to Dr. appointments and specialists and I was overwhelmed. But, it does slow down in that regard)

How well received he would be in the community. He melts people...I won't even know he's been flirting with someone and I look up and he's already engaged someone in some sort of contact (He won't let anyone walk by him without a wave and he'll keep waving until he's satisfied that he's gotten eye contact with them)

How NORMAL life would be with him

That he is more like a typical child than not

That his brother wouldn't care that he has Down syndrome, that Luke would absolutely adore him!

What an adorable personality he would would of helped me to relax and look forward to the future rather than worry about what he would be like

That I didn't need to be sad...he has so much to look forward to in his life

How much he would help us to put things/life into perspective

I wish I knew of the photo montages featured on the Gifts website I just found these videos this past summer...Scroll to the bottom of the homepage and on the left you will see photo montages. These videos, that families made of their children with Down syndrome, have been fuel to my soul!

How much I would regret that I did not take more pictures and video of him early on. This is hard for me to admit but I grieved for quite awhile and I suppose felt a little bit in denial and when I would see pictures it would remind me that he had Down syndrome, I kept trying to get the "perfect picture" where it didn't show the features of Ds. Of course I no longer feel that way...which is why I share with you, so you'll take oodles and oodles of pictures if you aren't already!! :) Actually I must inject a side comment here...I have a friend who also has a son with Down syndrome and she was trying to enter his picture into a contest and she too wrestled with trying to find the perfect picture that didn't look too "Down syndrome"...she got a comment back from the company stating that they were sorry but they wouldn't be able to feature her son because he didn't look Down syndrome enough. The lesson I learned from that was...embrace him as he is, he is beautiful just as he is!!

How much I would fall in love with the Down syndrome community. You are in good company...I know that sounds weird, but what I have found is that the families who have been BLESSED with a little one with Down syndrome... are amazing.

Sunday, October 12, 2008

October: Down syndrome Awareness Month (post #7)-It's a Small World!

If you have wondered why I have been titling every post this month October:Down syndrome Awareness month.. well it is partly because it is...but secondly because on October 1st when I posted my first note I instantly had 16 different countries pop onto my blog. I was up really late, so I thought my eyes were going buggy on me. I looked again and sure enough I had all these beautiful flags come up on my Live Traffic Feed down below. I was so 6 degrees of separation had just gone international!! :) It was about 1:30 in the morning but I had to share this with Toby so woke him up. We couldn't figure out what I had done other than title the post Down syndrome Awareness Month... so now it is hard for me not to put that same title each time in hopes that Japan, Sweden, Afghanistan, Ireland, Tokyo, Canada, Germany, Italy and the others would come back for a visit. It made me think of the song It's a Small World. It truly is amazing how Reid's extra 21st chromosome has made this world smaller for our family... and I find it so beautiful to be connected to others in countries and states I would of never otherwise had contact with.

If you are one of those new friends that popped on from another country, or a faithful friend that follows this blog... come back again for post #8 because I need your input for a brand new family I just met who has a 3 week old son who also happens to have Down syndrome. But, for now enjoy It's A Small World...Disneyland style.

Note: You need to pause the music down below first, on my playlist, before viewing the video.

Thursday, October 9, 2008

October: Down syndrome Awareness Month (post #6)-Will Reid vote?

People with Mental Disabilities Have the Right to Vote . 

My last post was just for fun (Luke got such a kick out of seeing his name up on the billboard as the "unkown presidential candidate" on the video clip if you took a look!!) but it got me wondering what the voting rights are for individuals with mental disabilites...will Reid be able to enjoy this right just as everyone else? Here is what I found;

You do have the right to vote! If you are a person with a mental disability and understand what it means to vote, federal law protects your right to vote. The laws that protect that right: The Constitution and the Americans with Disabilities Act, 42 U.S.C. § 12132; Doe v. Rowe, 156 F.Supp.2d 35 (D.Me.2001).

You have the right to get help from a person you choose. If you can’t read or need help voting because of your disability, you can have someone help you vote. You can bring a friend, family member or someone else you trust to help you. You can ask the poll worker to help you if you didn’t bring anyone with you. The law that gives you that right: The Voting Rights Act, 42 U.S.C. §§1973aa-6; The Americans with Disabilities Act, 42 U.S.C. § 12132 

If you have a problem, you can get help by calling 1-866-OUR-VOTE Lawyers are available to give voters with disabilities and other voters advice and help with voting problems, so call 1-866-OUR-VOTE (1-866-687-8683). The law says everyone gets to cast a ballot, so don’t leave without voting!

Even if someone says you cannot vote, the law says the poll worker must allow you to vote a special ballot called a Provisional Ballot. Later, an election worker will decide whether you are allowed to vote in the election. If you are, your vote will be counted. The law that gives you that right: The Help America Vote Act, 42 U.S.C. § 15482

For more information about the rights of voters with disabilities visit

October: Down syndrome Awareness Month (post #5)-Luke for President

Okay so in my last post I mentioned that while watching the presidential debate Reid got a little sick, well...barfed actually on the wood floor. But, I bet if he were of voting age the candidate in this video would definitely get Reid's vote and not make him so nauseous! This guy has my vote too...and my heart, and my genes! See for yourself!

I was hoping you could click on the link right from here, but I am having trouble getting it to do that... (if anyone knows what I am doing it in the comments) so you will need to copy and paste the link into your internet server address bar (I think that is what it is called!! Yikes...I am really showing my technical illiterateness here!)

I promise the video and candidate are worth it!!



Tuesday, October 7, 2008

October: Down syndrome Awareness Month (post #4)- Presidential Debate

Okay so this "awareness" post runs along the lines of ... "Be aware of what your children are doing while you are trying to watch the Presidential Debate". This evening our house was nice and quiet, both Toby and I were watching the debate and I happened to glance around the family room to do my motherly check in on the boys who were being awfully quiet themselves... Luke was studiously working at the table putting his spelling words in ABC order, but as for the shortest one in the house...Reid was sitting on the floor rubbing something vigorously into our wood floors... umm, when I went closer to investigate to my despair I found this little one... who had not been feeling too well the last few days...big sigh, rubbing his hands into...barf. Not good "my friends" (a little political humor). off to the tub he went..and NO, no pictures to accompany this didn't quite feel like a kodak moment!!! :) :)

Sunday, October 5, 2008

October: Down syndrome Awareness Month (post #3)-How will Ds affect Reid?

How will having Down syndrome affect Reid? This is a question I have received a lot...and decided this would be a great way to dive into the "awareness" part that this month is dedicated to. I actually like when people ask me this, it allows me to share what most don't know unless they are christened into this world somehow...and 21 months ago I wouldn't of known either. This question though will illicit different responses as he grows and enters different chapters in his life, so I will dedicate several different posts this month as to what it will mean to Reid throughout his life, at least as best as I can because Reid of course will be the real author of those chapters. 

For this post however I will answer the question as in...How has 
Down syndrome affected Reid from birth until now?

Muscle Tone: Most babies born with Down syndrome have low muscle tone, which means that their muscles are relaxed and "floppy", it usually affects all the muscles in the body including the mouth so nursing and feeding can be an issue. The low mus
cle tone affects movement and strength so many of the normal milestones like holding up their head, rolling over, sitting, and walking are delayed. Reid has low muscle tone and it took him awhile to enjoy tummy time to strengthen his neck muscles. He was about 8 months old before he held his head up really well, 10 months to sit up on his own...putting him in the "Bumbo" really
helped him in this area I think. He started to combat crawl just before his 1st birthday, crawled upright on hands and knees at around 17 months, pulled himself up to a coffee table at 18 months and started to walk around it while holding on. At 20 months he first attempted to stand up in the middle of the room all by himself without holding on to anything...such an exciting time! He doesn't stand for long, but now at 21 months he is trying to take a few steps. In comparison, just for comparison sake, Luke at 18 months was literally running circles around us.

Therapy: Because of the Down syndrome diagnosis and the low muscle tone Reid was referred to our county Regional Center when he was born and became eligible for services which are all paid for by the state. I had no idea this even existed prior to his birth. We have an occupational therapist come into our home once a week to work on fine motor skills and the muscles from the torso up. She also works on feeding issues, and facial exercises to help build the muscles in his face and mouth. It was once believed that people with Down syndrome had bigger tongues, making it stick out. This actually is usually not the is often because of the relaxed muscles. I am
 so glad our therapist pointed this out to me because we have worked on this from very early on and it has really helped him. The only time he really sticks his tongue out is if he is really tired or concentrating really hard on something. Okay...on to the other therapies. We also have a physical therapist that comes to our home twice a week to work on the gross motor skills, and m
uscles from the torso down. Once Reid is walking we will reduce this service down to one day a week. We also have another therapist who works on Infant Stimulation, the cognitive piece. Because Down syndrome affects the cognitive development we want to make sure we give him as much stimulus as possible and keep pushing him in cause and effect type play as well as sensory play. The pictures in this post are from some of his therapy sessions.

Speech: Babies with Down syndrome also experience delays in speech and language development. Knowing this we have decided to teach Reid to communicate with us through signing. He loves the Signing Time Videos He probably has about 15-20 different signs he uses consistently. We have a pocket chart in the playroom with laminated cards of objects on one side and the demonstration of the sign on the other side...really helpful for mom!! :) I also heard somewhere along this journey that singing to your child is very helpful in language development...well if you've ever heard me sing you would encourage me NOT to sing to him for fear of further delays!!...but luckily the former kindergarten teacher in me has oodles of great CD's that we listen to constantly. So, if you see me driving down the road singing the "Winnie the Pooh Theme Song" or "We're Going on a Bear Hunt" at the top of my's all in the name of therapy :)! We did just have a speech evaluation done to see if he qualified for speech services and awaiting the results. However, I was told during the evaluation that he was scoring so high that he may not be eligible for services. I have such mixed emotions about that because of course I want him to score high but at the same time I know this area will always be a little delayed so I would like as much help as early as possible. This could be a whole post on it's I'll write more about this later in October after I get the results.

Heart and Immunity: Nearly 50% of babies with Down syndrome are also born with a heart defect, many times requiring surgery. Reid underwent open heart surgery in August of 2007 (If you are interested there is a post about it in my August folder with pictures). He was nearly 8 months old at the time
 of his surgery. I was told to expect a new little guy after surgery and they were right. Reid had a hard time gaining weight prior to surgery because his heart was working so hard and burning so many calories. His immunity had also been compromised
and he would often get respiratory infections...because of the heart not working properly his body had a harder time fighting. But, after surgery he is so much healthier and active. He does need to take heart medicine twice a day and is still monitored closely by his cardiologist.

Socially: Having Down syndrome does not hold this little guy back in any way socially. He is so friendly, waving hi, with both hands no less, to everyone in the grocery store or wherever he is... He even reached out to a total stranger at Disneyland the other night to have them hold 
him.  I've also signed him up for several classes through our city's parks and recreation program He has been well received and LOVES being with the other children.

I hope this post gave a little window into how Down syndrome has played into Reid's life so far. He continues to grow and develop and is starting to show his personality...which is so cute!

Friday, October 3, 2008

October: Down syndrome Awareness Month (post #2)-Gifts video

This video speaks for itself and brings a tear to my eye every time I see it. Reid..."Your loving is a miracle, how deeply you're connected to my soul" all of us. You ARE beautiful and we love you!

*Note: you will need to turn the music off down below on my playlist before viewing.

Wednesday, October 1, 2008

October: Down syndrome Awareness Month (post #1)-An introduction to our story

Today being October 1st kicks off Down syndrome Awareness Month. Many bloggers are committing to blogging something related to Down syndrome awareness or their personal experience raising a child with Ds every day of the month...31 posts for an extra 21st chromosome. Knowing myself I decided I better commit to only 21 own version of sorts....I'll be posting 21 times in honor of Reid's extra 21st chromosome. Next year I'll try and do the real deal and post all 31 days.

As I thought today about how to start this commitment, where to start, what to write... I saw Reid, who had found his way into my office, waving hi to a picture in there. The picture was the one on top. This was actually our Christmas card picture for 2006, taken just weeks before Reid was born on December 28, 2006. Now... I have to preface this by saying I have not posted any pictures of myself on this blog, purposefully in part and in part because I realized I am never really in pictures...I'm always the camera holder. So, never posting a picture prior and now having my first one being 8 1/2 months pregnant and 50 pounds heavier than normal...well, let's just acknowledge my bravery for a moment. :)

But, the more I thought about it I thought this picture was the perfect way to introduce our story. At the moment that picture was taken...just weeks before my delivery date, we had no idea how our world was about to change...We knew we were having a boy and that his name would be Reid Maddux, but we didn't think we were going to be "the one".  Our prenatal AFP test came back indicating we had a 1 in 18 chance of having a child with Down syndrome. We wrestled with the numbers for a few days and talked about what that would mean for our family if he did have Down syndrome...but there was never a doubt that we would keep him, no matter what, he was our son. We refused an amnio because neither my husband nor I wanted to take any chances of a miscarriage, Reid was too precious to us to take the risk...and we had waited so long to get pregnant again after Luke. (Do you know how hard it is to refuse an amnio? We kept being asked over and over again if that was really our choice and if indeed it was we had to put it in writing with our signatures, to protect the Dr. office from a "Wrongful Life Suit". Are you kidding me??)

Reid was actually an invitro baby after many years of trying to get pregnant unsuccessfully. We even started out with twins, but lost the other baby at 10 or 11 in my head I kept thinking that that baby's DNA may be what is throwing our numbers off. I even had a neonatologist concur that that could indeed be the case. We continued to be monitored by a specialist to check for hard markers for Ds and there were none...we spent several visits going over his heart, and there was no indication of any heart defects...

"We weren't going to be the ones" so we did not do any research on Down syndrome...we just smiled at the camera for that Christmas picture and continued on with our details of preparing for another little one in the house. I am glad for this. I know many people who are grateful they knew, but I happen to be one who was grateful I did not know, I would have worried.  

Our delivery date came, our little boy arrived, and were told the news...that we actually were "the ones" and that he also had a pretty severe heart defect. We cried, we fell to our knees literally and figuratively, and were set on a new path...and here I am now blogging about it, funny how life happens. 

We don't cry anymore over his diagnosis, and had I known then what I know now...I wouldn't have cried a tear. Our little one is amazing, he is excelling, he is precious, and I couldn't imagine my life without him. 

I am hoping in the next 20 posts to share some of what we have learned and experienced in the last 21 months while on this new path.