Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright
©

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Monday, March 29, 2010

My Journal - Week 32 (29Mar10)

A few cute new pictures to post....

I haven't posted any pictures for awhile, and so I thought I would put a few new ones of Hunter wearing his nice new (but overly large) baseball cap.  This new cap appropriately says "Treasure Hunter"!!  How cute is that?  Daddy and I saw it and knew immediately that we must purchase this for Hunter.  I think the play on the wording is really great.... Treasure, Hunter.  And boy do we ever "Treasure" him!  Wink wink.

Sorry about the quality of some of the pictures, for some reason a few came out kind of blurry.

[How do you like my new cap?]

[Gwad, I am awfully cute...]

[NO! You can't have my cap! (Look at his hands!)]

[Daddy, you've got me right?  I've got my toes though....]

[Now, I know this hat is just too big - for now....]

This last shot was taken specially for our friend "Uncle Bruce" (aka SideWazE) - who is infamous for wearing the backward cap look!  And it is very convenient that there is a pirate motif on the cap since Hunter went through his "Ahh Ahh Ahh" stage, a few months ago - sounding very much like a pirate!  Seriously though, when we bought the cap we thought it would fit, since it was bought in the baby store "Children's Place" and is size 12 months...  I guess we over sized it just a bit!

Publication update:  
I have added PayPal to my blog under my "Sandi's Publications" page for those interested in purchasing my book directly from the blog.  Copies can also be requested by emailing me at: tkd73@sympatico.ca .  
A quick note for those who have asked about the pricing - I did not set the pricing for the books.  Also, I had no say in it.  The pricing is set by the publisher using a standard for the industry (based on type of book and page count).  
Many thanks to everyone so far who have ordered my book, and to those of you who will - it means so very much. 

Saturday, March 27, 2010

My Journal - Week 32 (27Mar10)

Another wonderful and inspiring message....

I found another really special message that sums up pretty well everything I say and advocate about regarding Down syndrome.  I really like what this author and mom (Stephanie) has to say, and her insight is simple and straightforward.  It's neat, concise and to the point.  Above all else, it's what I wish everyone could read.

You can read it here:  http://www.simplymodernmom.com/2010/03/simply-said-stephanie-about-down-syndrome/

She tells everyone in a simple way what the "Top five truths about Down syndrome" and "Five ways to value people who have Down syndrome".  I loved it so much that I felt it should be shared as much as possible.

I hope you enjoy her work as much as I did.  She is also the author of a book called "Understanding a Down syndrome Diagnosis" which focus on a prenatal diagnosis and gives excellent resource information and as she puts it "a glimpse of the lives led by people with Down syndrome".  I wish I had heard of this book when we learned of Hunter's prenatal diagnosis.  It probably would have saved me a lot of unnecessary filtering through terrible and outdated information on the Internet, and in the bookstores.

Friday, March 26, 2010

My Journal - Week 31 (26Mar10)

It it just Murphy's Law or is it just fate??

This particular journal entry really has more to do with me personally than Hunter, but I feel that it is important to note it for the book.

Recently we have been seeing a fertility doctor to assist us getting pregnant (again), and we did some standard tests.  One of the tests was called a HSG (hysterosalpingogram) which is an ultrasound and dye procedure to check for blockages in the uterus, ovaries and tubes.  When I was getting it done the tech and doctor doing the test had said everything looked good.  When I went this past Tuesday for my results with the fertility doctor, he tells me my tubes are blocked!  Really?  Are you kidding me?  I asked how this could have happened since being pregnant with Hunter, and he tells me I could have gotten an infection from the C-section.  Who knows.  Anyway, he tells me that 50% of the time the test result is wrong, and asked me if I want to have the more specific hospital test (Laparoscopy) that he usually does after getting a result like this, or if I want the same HSG ultrasound done again in case they made a mistake.  (He suggested I do the HSG again since he only does the hospital test once a month, and he just did them the day before on Monday.  I agreed because I don't want to delay conception any longer than I have to or it has already been.  This is our 4th cycle trying without success.  I stopped breastfeeding Hunter so that I could re-start taking my medication for my Pituitary tumour which was the reason I could not conceive initially (that's how we had to get pregnant with Hunter as well) and I was hoping that was the only reason I wasn't getting pregnant for the last 3 months.  Now, who knows.  Maybe it was that or it could be a blockage if my tubes truly are blocked.  The fertility doctor then tells me if the are indeed blocked, our only course of action is IVF (In vitro fertilization).  In the United States they do tube opening surgeries - I saw this on the Internet.  I don't know if they do not perform them here or if my fertility doctor is just trying to make more money from me....  This news was devastating to me.  I researched IVF and aside from the exorbitant cost, it's effectiveness is very low - I don't know if that information was true or not, but I am completely discouraged.  I always planned on having more than one child - being an only child myself, I swore I would never do that to my own child.  It was a very lonely childhood aside from friends and cousins.  Maybe I am worrying for nothing, but in my life things have always been "if it can happen to me, it will"  and that literally is and has been the story of my life.  I hope that this time "Murphy" wont be the law, and somehow in the wonderful world of hope the results will be positive.  Perhaps as we speak I am already pregnant and my worry and fears will be all for not.  I don't want to get my hopes up high only to be disappointed, but at the same time I need to be an optimist.  That is my true nature.  I will always be forever grateful that we have Hunter should I never be able to have any more children, but it is sad none the less to be told that you are no longer capable of creating new life.  I certainly believe in fate, and destiny and so I hope that my path is not going to be negative.  I just thought it would be prudent to add this to my journal as this definitely is part of our journey and I believe it truly concerns Hunter since it is for him also that we want him to have a sibling.
I will keep everyone updated as we learn more. 

Monday, March 22, 2010

My Journal - Week 31 (22Mar10)

Publication update...

I am pleased to announce my Analogy has been published on the Exceptional Parent website.  (Just in time for World Down syndrome Day.) 

You can view the article on their site but you may have to register (no charge) first.  The site is a wonderful resource for families.

Here is the link:  http://www.eparent.com/main_channels_family_community/Welcome_to_our_House_An_analogy.asp

And to the preface:  http://www.eparent.com/main_channels_family_community/index.asp
(It is the second article down just below the Top Story.)

Thank you very much to the magazine for publishing my work.  This information will be available on my Sandi's Publication page.

Sunday, March 21, 2010

My Journal - Week 31 (21Mar10)

Happy World Down syndrome Awareness Day!

Today appropriately is named Down syndrome Awareness Day because of the date:  3 (March) 21 (For the 21st chromosome in Trisomy 21).  I am hoping that today all the voices are heard and people everywhere who have Down syndrome in their lives are shining.

Recently a group that I became afiliated some time ago discovered that there were some terrible people out there demeaning children with down syndrome by defacing their beautiful pictures.  It got to a point where some of my fellow bloggers were having second thoughs about posting pictures and stories of their children.  This really saddended me and after a while angered me that such bullying will defeat the purpose of us being out here.

It's time I post a little story about how my blog helped someone who needed our voice (this is posted with permission).

A few weeks ago, I received a note (in my new Down syndrome forum) from a mom to be who had learned her baby had a 1 in 3 chance of having Down syndrome.  Distraught, she turned to the interent to research and learn all she could before making any rash decisions.  This is what she sent me:

Sandi,
I received our test results today saying that our baby has a 1 in 3 chance in having down syndrome.  In researching online I found you here & I also visited your blog.  You have a beautiful baby boy & watching his videos & looking at his pictures only further cemented my opinion about the possibility of having a child with down syndrome.  My dr & a few close family members mentioned terminating the pregnancy & I couldn't imagine doing so.  Thank you for your information & all of your research & for allowing me to have a peek at your life with your absolutely perfect baby boy!!

Now, unfortunately the story doesn't end happily.  After approximately 17 weeks into her pregnancy my new friend lost her baby, and after all the worry and concern, Down syndrome seemed so irrelevant and minute in comparrison to loosing her baby.  She wrote:

Sandi,
We had a sample sent to the specialists the day that he passed, My dr. said it should take approx. 7-10 days for the results.  It seems so strange to us now, we were so upset & stressed at the thought of him having ds.  Now, we would give anything just to have him.  DS seems so trivial to be upset about, we wouldn't have loved him any less.  Part of me doesn't want to know what was 'wrong' with him, to me he was absolutely perfect.  I know that if I don't find out I will never get any closure.  On the 12th of April DH & I are also meeting with a genetic counsellor to discuss our losses & family history.  It seems a little too coincidental that both pregnancies were lost within a few days of each other.  They are going to take blood from both of us & run some tests.  I have 3 children from a previous marriage & he has 6!!!  All of them perfectly healthy pregnancies & children.  They are thinking there may be a problem with our genes together....I hope not.  Whatever they may find, I pray that there is something that we can do.  Thank you so much for your posts, it means a lot to know that I have so much support.
 
It is for this reason I do what I do.  When I found out about Hunter's diagnosis, I turned to the Internet for research.  I needed to read about real life situations, and many blogs had that.  Regular medical information was available but it was blunt and static.  Blogs are full of life and reality.  They had the real stories and circumstances I wanted to read about.  The blogs were full of true emotions, whether joy or sadness.  That is what I needed when I was researching.  If they were not there for me, I am not sure where I would be today.  Family and friends have opinions but that's all they are.  With out the experience, those opinions can not answer the many questions that many of us had when we learned about the Down syndrome diagnosis.

While I never want anyone to degrade my son, deface his picture or do anything negative, I will not be complacent with my blog.  I will endeavour to protect him physically and emotionally but I will not be bullied into submission and stop posting about our life.  Our children need a voice, as do the children with Down syndrome of the future.  Predators will always be out there, but they will not win.  If we can save one child, we have done our job.

Thursday, March 18, 2010

My Journal - Week 30 (18Mar10)

Did anyone say crawling.... Anyone?

It figures...  yesterday while I was upstairs having a much needed sleep (recovering from a bad cold) Grandma and Daddy saw Hunter do something wonderful.  He crawled!  However, let me clarify - he crawled backward!  It's truly ironic, at cousin Taina's baby shower a few cousins and I were talking about Hunter crawling, and we specifically said he will probably go backward before he goes forward - and there you have it... he went backward.  Albeit he only went two steps, it was unassisted.  Look out world, here comes Hunter!  Too bad I missed it....  I am so happy he did it, but so sad that I missed seeing it happen for the first time.  Hopefully next time he does it, I will get it on the camcorder.

Another milestone to record in the baby book!  Yay Hunter!

Tuesday, March 16, 2010

Charlie's Adventure - The release!

Announcing... The release of: "Charlie's Adventure"


I am pleased and proud to announce the release of my first book "Charlie's Adventure".  You can read the details and summary of this book on my Sandi's Publications page.  My publisher has advised me that my book can be ordered from them directly from their site:  www.Xlibris.com  by going to the bookstore tab and then using the search bar and typing "Charlie's Adventure" into the field.  (You will be brought directly to the page where my book is listed.  Click on the book and you can read the summary or order from that page.)

Or - you can go to Sandi's Publications (under the "Welcome to Our House" banner at the top of this blog) and use the links on that page to order the book.
For those who don't want to order through the web, you can call Xlibris directly at 1-888-795-4274 to place a phone order.  In fact, if none of these options work for you, call me or email me and I can order it for you!  Eventually I will have a direct order page of my own, but that is currently in the works.

For larger orders, you can contact me directly and I can place orders through my publisher.

My next two books are in the works, and are currently in submissions stage with the publisher.  I will let everyone know when they are available. 

Well, all I can say is PLEASE ORDER my book!!  Makes a great gift idea!

Sunday, March 14, 2010

My Journal - Week 30 (14Mar10)

It's her party and I will cry if I want to...  (But I didn't!)

Yesterday was my cousins wife (Taina's) baby shower, and Hunter (again the only man at the party) was a good boy.  Hunter has gotten over his "I will be strange with you if I don't know you...." phase.  He was happy, smiling and good to go to anyone.  He blew raspberries, he gave high fives.  He even fell asleep in one Aunty's arms and drank milk for another Aunty.  I think Hunter is living up to his personality of being quite the ham.  Funny, I didn't even get to hold my son for the entire afternoon!

So, since I am so snap happy, here are some of the highlights of Hunter's day.


[You want five?  I'll give you five!]

[So, you want me to stand up eh?  I can do it with your help!]

[Look at us!  We are 2 months apart!]

[Why do Mommy's always make us kiss?  Yuck.]

[Thank you Aunty for giving me some milky... I was hungry.]

And I forgot to post this a few days back - Last Thursday one of my girlfriends and I had a baby play date.  We even took our tots for a walk since it was so nice out.  Our sons are just about six weeks apart - but is there ever a big (and I mean big!!!) difference between them!  But we have no doubt they will be the best of buddies.

[We are so cool looking!]

[Getting ready for our walk...]

[Hi Mommy!  Look at me, I want to crawl!]

I've been accused of being overly photo happy, but if I don't take these now, I will have missed the opportunity.  These things only happen once, and Hunter is only little once!  So, sorry folks I will endeavour to snap on!

Friday, March 12, 2010

My Journal - Week 29 (12Mar10)

Bottles, bottles for everyone!

I am happy to say, Hunter is doing very well with this breast to bottle transition.  He is now taking more than two ounces at a time.  He is taking four to five ounces at one feeding.  The only thing that we have discovered is that he has kind of reverted back the the "newborn impatience" when waiting for a bottle to be warmed.  When he was a newborn and hungry, he would cry so hard probably thinking his milk was never coming.  After a few months, he learned that a little noise would suffice.  Tonight, out of the blue, Hunter decided to shout out that he wanted milk.  Within two minutes, he was practically screaming with tears and all.  I think because it takes a few more minutes to warm up a bottle as opposed to just giving baby a boob, he thinks no one is listening, and that it isn't coming.  I am guessing when he realizes that this isn't the case, he will settle back down.  In the meantime, it's heartbreaking watching him cry wanting his milk so badly.  All I can do is yell back "Milky is coming!" hoping like a crazy woman that he will understand and that will pacify him.... Yeah, um nope - doesn't really work.  In fact, all it does is add to the noise level.  Hunter screaming, and me adding to it.  What can you do??!

Hunter's BM update:  Yes, they are still regular.  Everyday.

Thursday, March 11, 2010

My Journal - Week 29 (11Mar10)

A toothy surprise!

I promised you all an update when Hunter's first tooth came in a little more, so you could see it.  I always have to wait until he is sleeping to take the picture or he tries to chomp my finger off.  (Fingers make great teething toys.)  In this picture, you can see that it is a straight top with a little sharp point on the right side of the tooth (your left looking at it).  That is why initially I thought Hunter's tooth was going to be pointy.  I guess that little point will even out as he starts to eat other things. 
[Mommy took this while I was sleeping...]

[I am so drooly these days... makes for the perfect raspberry though!]

I thought the second bottom tooth would come out at or near the same time, but it looks as though it will not be coming up just yet.  It certainly is under the gum though, I can feel it raised up.  That would be cute to see - two bottom teeth!  I will keep everyone posted on that.

Personal note:  Hunter continues to have BM's, both the 9th and 10th.  I think that going forward I will only post if he doesn't have one for a lengthy period of time, now that he seems to be "regular".  He has been going everyday for about a week now.  I guess that finally closes the chapter on the case of the slow bowels!

Tuesday, March 9, 2010

My Journal - Week 29 (09Mar10)

Announcing...
A new Down syndrome discussion group has arrived!

I was recently (and personally) asked by a website called MedHelp to create a discussion group for Down syndrome.  I thought about it and decided that it would be a great idea, and a wonderful place for people to gather, ask questions and share stories or whatever they wanted.

I personally am a member of MedHelp, and I found their site while researching other health topics.  They have a wonderful Medical resource area, and loads of tools for all kinds of things like tracking weight, trying to conceive, moods, water consumption and the list goes on.

To get to the forum use this link:  http://www.medhelp.org/groups/down_syndrome
The group is called:  MedHelp - Down syndrome  (not to be confused with the generic Down syndrome Community - which also exists on their site)

The group details are as follows:

This group is for anyone and everyone who is interested in Down syndrome. Perhaps you have a child with Down syndrome, or family member. We all have questions and sometimes the best resources are each other. Hopefully this group can help if you are struggling with a diagnosis either prenatally or after birth. This group was created with the hopes of educating and helping those who want to know about Down syndrome. If however, you are struggling with a decision regarding termination, please know that the people who are here, are here because they have either chosen or accepted Down syndrome in their lives. Whatever your questions, stories or concerns hopefully we can help.

This link to the forum will be available on my list of Websites for those interested in Down Syndrome (found down the right hand column of my blog.

I hope that if you enjoy my blog, you will enjoy the forum I created.  I hope that it grows and is a resource for anyone out there who needs it.  Welcome new users!

Monday, March 8, 2010

My Journal - Week 29 (08Mar10) Afternoon

Raspberries are Hunter's favourite - what about you?

What would you do if you had a raspberry blowing baby?  Hunter has discovered how to blow raspberries, and it has become a nonstop Olympic event.  I kid you not.  I wish that our video gave justice to exactly how much and how often he is doing it, but I guess when we recorded it he was camera shy?  Hunter is doing it so much that he is giving my laptop a bath, and I am constantly getting spittle facials.  Yucky!

I love that we are catching these firsts on video.  It is such a cute thing, and it's only the beginning!  (It's a short 2min38 sec video.) 



I hope you are enjoying these recordings as much as we are, it is definitely a lot of fun.  Too bad we can't put the video's inside of my book!

My Journal - Week 29 (08Mar10)

"C" is for cookie, that's good enough for me....

A remarkable moment caught on film.  Hunter feeding himself (for the first time) an Arrowroot baby cookie.  Aw, this is so sweet, I couldn't resist posting a few pictures of Hunter eating his cookie.

 
[Whatever this thing is, it tastes good!]


[I am the cookie monster... in disguise of course!]

Tooth update:  Although the point is sharp (still) we can now see that it will have a flat edge across the top as opposed to being just one sharp point.  Looking inside his mouth today, we can see more of the tooth and it looks like a typical tooth.  I am guessing when it cuts through the gums, one edge comes up first but then levels out and ends up flat like it is supposed to be.  Interesting!

Sunday, March 7, 2010

My Journal - Week 29 (07Mar10)

I think I can, I think I can.... wake the baby up that is....

This morning, I had an "Ah ha!" moment.  Do you recall me saying sometime ago that there was something between 4:30 and 5:00 am waking Hunter up almost everyday for a period of time?  Well, after some coincidental snoring from Daddy that woke me up this morning, I finally have discovered what wakes Hunter on occasion - and no, it wasn't Daddy's snore but it was probably the prelude to what actually woke him.  As I was lying there, startled from the loud snore, I waited to see if the snore woke the baby.  Nope, it was all good or so I thought.  Approximately one minute later, there it was - the loudest blaring horn (in the distance) a train could make at exactly 4:36 am.  Not just one toot, or even two.  Kind of one long blast, one after another.  Within seconds the baby started stirring, and then the clickity clack of the train wheels rolling along down the tracks, could be heard in our "so quiet you could hear a pin drop" home.  I looked at the clock - yep, 4:36 am.  And I was hoping Hunter would settle himself back down to sleep, but no such luck.  I had to laugh, even though I was kind of upset.  I never realized how loud the train sounds when there isn't anything else going on (like sleep....).  Also, after all the years of living near trains throughout my life, I have simply grown accustomed to the sounds, in fact I find the train soothing to me, and I would miss it if it were not there.  But having said that, now that we have a baby, I am not so happy about the horn.  What's more confusing is, where we live, there is absolutely no reason whatsoever for the engineer/conductor to blow his horn!  There isn't a level crossing anywhere around.  Where this train goes by, it goes over a road on a train bridge, and the next major streets over in any direction this same train goes by those streets via train bridge.  I can't see the logical reason for blowing the horn, except to wake up the living dead.  Thankfully most of us are almost dead at that hour, and don't really ever notice it.  Most, except Hunter.  In time, he will get used to it I am sure.

I am at a point where I wonder if I should call Canadian National or Canadian Pacific (CN/CP) to ask them why the horn blowing happens where there is no level crossing.  I know from personal experience (having had to respond to a police call regarding this same train line, when there was a fire along it about 8 years ago.  We had to send police to shut down local traffic where the train track crossed, because of the danger of the spreading fire caused by a spark from the trains wheels along the side of the track where bush brush usually grows.  That summer it was very dry, and the fire started and spread a great distance along the tracks.)  So I know there is no level crossing where this train goes, and therefore no reason to warn traffic of its approach.  What would you do?  When nothing wakes Hunter, he sleeps 8 hours straight, has some milk then goes back to sleep for another 4-5 hours.  Any suggestions out there?

Personal Journal Note:  Hunter had another BM.  Three days in a row - yeah!

Saturday, March 6, 2010

My Journal - Week 29 (06Mar10)

Transitions are meant to be smooth...

Some times transitions are difficult, and I believe many times we make things more difficult than they need to be.  I ended up getting a lot of great advice from plenty of sources about getting Hunter used to formula.  Today, Hunter drank four ounces of ready made Similac on two separate occasions.  And he also breast fed in between.  What makes me laugh is that I read on so many occasions that formula will probably constipate him because of the additional iron added, but since starting him on the Similac, he has had two big bowel movements (yesterday and also today).  I presume it is because I fed him the organic prunes.  So, hopefully the formula wont add to his already slow bowels, and maybe for the first time in his life (except at birth) he will go regularly! 

So, again - thank you to everyone who gave me great advice on how to transition Hunter.  (Especially Lesley, Jane & my friends at Baby Centre - Down syndrome group.)  Your on going knowledge is invaluable to me.

Friday, March 5, 2010

My Journal - Week 28 (05Mar10)

The poop strikes back and revenge of the poop....  
(The sequel to the Poop Diaries)

Are you kidding me?  I thought this wouldn't happen again, but I was wrong.  Expect the unexpected.  I guess we learn these things as we raise babies.  I am also guessing that my regimen of Prunes and Oats plus sugared water is truly working.  Not just moments ago, Hunter decided that it was time.  Time to do the poop up the back trick... and lie there laughing about it, covered in poop.  Like a  funny scene out of a comedy, here goes Daddy and I like two crazed parents trying to clean Hunter before something ends up covered in the poop.  Anyway, I had to put it in the journal but I wonder how many ways I can do this without making people bored and sick of this topic.  And what's funnier, (as my mother in law said to me) in the end poor Hunter is having his vital moments plastered all over the Internet for his eternal embarrassment when he is older.  What a great Mommy!  All I have to say is good thing I don't have any pictures of that one.

On the publishing front:

I am pleased to announce, my book: Charlie's Adventure  - release date for sale will be 27 March 2010.  On this date, the paperback version will be available to order online for immediate delivery.  The hardback book will be available to order also, but will not be delivered for about two weeks simply because production of hardback books takes a little longer.  The list of online websites for the books are forth coming.

I have signed my contract to publish the next two books - I have Down syndrome, what does that mean?, and Buddy the Little Bucket, and as soon as I have release dates for those, I will put out a post and update my "Sandi's Publications" page.

Hope you all will be ordering my book!  While it was work, it was certainly a lot of fun to write and publish.

Thursday, March 4, 2010

My Journal - Week 28 (04Mar10)

He's cute, he's funny, he's a star!

Tonight, we found out Hunter loves to laugh for no good reason.  Well, perhaps I am a funny reason - I am not sure, but Hunter seems to think so!  I uploaded two videos which are of Hunter - one laughing his head off, and one with him playing with his bucket of blocks.





And here are some still pictures of Hunter playing with his blocks.  Thanks to our E.I. consultant Jenn, we bought a Nuby stool for Hunter, to help him sit up by himself.  It worked so well to encourage him, and he can play with his toys:

 
[Look at me go!]
[I can bang my blocks!]
 
[I can do it all!  I like this green block so much!] 

I thought I would also add this picture of Hunter showing me he wanted to hold his sippy cup of water by himself.  Silly me!
 
[I got it mom... I'm good.]

I love that Hunter wants to show me everything he can do.  It tends to be a surprise sometimes, but I encourage him to do everything and anything.

Wednesday, March 3, 2010

My Journal - Week 28 (03Mar10)

We have success!

I am happy to update that the ready made Similac formula was a hit.  I guess Hunter just doesn't like the powdered stuff, and as I said before, I don't blame him.  It tastes horrible and has a terrible after taste.  The ready made one does not.

This will certainly be easier, no mixing.  But the price of ease is not cheap.  I know that the ready made formula are more expensive.  I wish I had access to purchase the cases from the hospital.  They are perfect four ounce bottles. I called the hospital and they tell me the cases are not for sale, but that I can call Similac to see if they can provide it.  I ended up calling Toronto Sick Kids specialty food shop and they tell me they sell a ready made Similac formula in the can.  So, it does exists - and I am told it is $3.99 per can.  Ouch.  Oh well, if it works, it works.  This is the price we pay for success.

Here are two pictures of our success with the formula.

[It's yummy Mommy!]

[I want to hold the bottle myself!]

I hope that this works out, and we are able to get him on bottles during the day.  Thanks to those who made the suggestions - obviously it worked!

Tuesday, March 2, 2010

My Journal - Week 28 (02Mar10)

The poop diaries....

Today we dealt with yet another painful episode, but we weren't sure what was causing it.  Thank goodness these painful experiences are few and far between.  It could have been teething, or the rotovirus vaccination today, or perhaps his tummy.  When we went up to bathe Hunter, we discovered why he was so upset about 20 minutes earlier.  He had a poopy.... His tummy was hurting.

I know that he is feeling much better now.  My newest problem is I am trying unsuccessfully to get Hunter to try some formula.  I have learned that the powdered stuff tastes like crap.... honestly.  And if I don't like it, how could I possibly expect Hunter to like it???  I am moving to the pre-mixed formula which Hunter had liked when he was being supplemented as a jaundiced newborn .  Who knows if he will still like it much less remember that he liked it!  I have some left over bottles from the hospital that have yet to expire.  I am going to try giving him some - maybe tomorrow.  Today had enough shock value for one day.  Has anyone else had this problem - going from breast to some formula and not having much luck with it??  If so, what did you do to get baby to drink it?  Feel free to leave comments in the comment section below this post, and above reactions.  I definitely could use any suggestions!

Monday, March 1, 2010

My Journal - Week 28 (01Mar10) Afternoon

The kid's got heart!

Today was Hunter's six month heart specialist checkup appointment.  And it was great. 

A little history for those who don't know what I am talking about.  When Hunter was born, it was discovered that he had a heart defect, as 40-60% of babies with Down syndrome do.  The kind of defect he has is called an ASD (Atrial Septal Defect) or otherwise known as a hole in the heart.  (Click the highlighted words for different links.)  When we learned about his ASD, we were told that it was fairly large, (8mm) but that many ASD's spontaneously closed on their own.  We also learned that he also had an unassociated heart defect, called a Bicuspid valve, (two flaps in the valve instead of three).  We were told that the valve was not an issue, and would not cause him problems until maybe much later in life.  At that time, if something is needed, it can be looked after. 
When I learned about these things from the cardiac specialist, I immediately went home to research these defects.  I learned that a medium to large ASD, usually required surgery, (albeit a very common surgery) because they tended not to close spontaneously as quick or as well as smaller ASD's.  Our doctor said that if things didn't close up on their own, Hunter might need a heart surgery before 3 years of age.  We were given another appointment and told that for the moment, the doctor wanted to observe the condition.

This brings us to today.  Hunter had his heart ultrasound and we learned that his hole has significantly closed, so much so that the cardiac specialist didn't even need to measure it.  He guessed that it was now nearly 2mm.  (Almost gone.)  He told us that this was a huge unexpected change and that it was great.  He presumes Hunter will not need surgery.  Yeah!!  Daddy and I were so pleased, and couldn't be happier.  A good sign of future things to come.  Thank goodness.

My Journal - Week 28 (01Mar10)

We would do anything for our children, but does that include stem cell treatments?

Every time I look online for a new forum to meet and chat with other parents who have children in their lives who have Down syndrome, I see ads and treatments posted on the site for the possibility of curing Ds.  Like any curious mom, I check them out to see what is being said.  Now, I have no intention of feeling or believing that my child needs "curing" but I am always open minded enough to think that if there is something out there that may help my son better his own potential, I will listen.  If there is a book, or video that will help Hunter to learn, I may buy it.  In that same case, I keep my mind open in that very same way, when doctors suggest that someday there will be help available that they call a treatment.  What I will not do, is think that my child needs to be changed.  If there is something that may help him learn better, or develop better, like any scholastic tool, if it doesn't harm him, I will listen. 

Here is what I came across (first the written testimonial of the person who's son underwent this treatment):

Luca - Down's Syndrome

Luca’s mother - “I was told by my pediatrician my son Luca had Down’s Syndrome and that their was nothing that could be done. After his stem cell treatment a miracle occurred, he eventually became completely normal in appearance and his I.Q. actually tested higher than average for his age”.

This is the video about the doctor and the treatment.  (It is 18 minutes long, because it has three different stories one of which was about Luca and his Down syndrome treatment.)
Here is the web site regarding this doctor and treatment:
http://www.medra.com/?gclid=COG1i7uKl6ACFdx05QodLzqmeA

Like my last post about potential cures, I am left with a curious and conflicting feeling.  I accept my son, and I like him just the way he is, but is that irresponsible of me not to consider an available "treatment" that supposedly could help him where his IQ is concerned?  I am left with the thought, if my child did not have Ds, would I consider "treatment" to raise his IQ if it were low.  Because it is medical, is it different that we as a society are constantly struggling with always trying to better educate our children and ultimately provide them with the means of making them smarter?  Is, at the end of the day, the result different than the TV infomercial that shows a baby reading due to a video that teaches the child how to relate an image to a word?  (Yes because this is a medical treatment, and the other is a learning tool.  Hopefully the end results are the same, but the medical treatment gives a child with a genetic anomaly the chance at achieving the same goal.)  So at the end of the day, where does that leave us?  Are we bad or good parents either way?  Are we bad because some may think we are trying to change our child, or bad if we don't do it.  And are we are good because we accept our son as he is, or because we want to help our son and give him the best possible treatments available. 

I have an ongoing poll regarding potential cures and what you would do.  Please visit the poll and vote if you haven't already.  I am curious what others think about this issue.
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