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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Tuesday, November 30, 2010

My Journal - Week 67 (30Nov10)

Independent Walker Walking For Hunter!!!

So, just for fun we cleaned up Hunter's play area, taking out unnecessary things which gives him much more space to play and walk!!  We put down more rubberized floor (this time using the alphabet/number cut-outs that I bought sometime ago) so that Hunter had a larger area to use his walker.  It has been a bit worrisome allowing Hunter to use his walker on the tiled floor since the walker can literally get away or move faster then I or Hunter would want it to so it was a whole lot easier for me to let Hunter use his walker on the rubberized play floor and also let him experiment with walking on his own.  If he fell, he would be mostly protected by the padded floor and it also prevents the wheels from sliding along the floor or slipping even when locked or reduced rotation.

What an experiment!  I still blame myself for Hunter not walking earlier because now seeing what I am only proves to me further that Hunter was willing to do this and if only given the chance to try it before, he likely would have excelled.  I guess I am the one with delays, not my Hunter!!  It's pretty obvious that when he first started standing at furniture I should have gotten someone to help me see if Hunter could try his walker since my back prevents me from bending over/down to do it with him.

Here are three short but very sweet videos of Hunter's latest progress... walking with his walker, BY HIMSELF!

ENJOY!

Oh, and just for fun, since Hunter has been attempting to sing along with me lately to his favourite song since birth, I thought I would add that into the last video for you all to enjoy!







PRODUCT REVIEW & NOTE:  The alphabet/numerical padded foam floor can be purchased from Toy's R Us.  The letters and numbers can come up from the floor and is very colourful for child interest and teaching.  The consistency of the floor is the same as the larger full colour foam padded squares.  I would however note that we purposely did not use that floor first (before the larger full squares) because the centre pieces in some of the letters/numbers such as the number six and eight have smaller circular parts that might be able to fit into a mouth of a curious baby.  For that reason when we first introduced Hunter to the alphabet/number floor I removed all of the smaller parts for his safety.  Even at this age, I still completely supervise Hunter when on this floor because he is able to pull up the numbers and letters from the floor to play with.  But I completely recommend the foam padded flooring for fun and safety for infants, especially when learning to sit, crawl and/or walk!  It has helped keep bruises to a minimum during these times!

Thursday, November 25, 2010

My Journal - Week 66 (25Nov10)

How to accept or cope with Down syndrome, or someone else's emotions about Ds....

I know on various levels I have visited this topic but after reading some comments on one of the Down syndrome support boards that I frequent and also a personal experience that I have recently had, I wanted to share a bit more with the world on this topic.

There are many places which parents start at, deal with or get to during a diagnosis and journey with Ds.  There is the initial grieving stage, (commonly known as grieving the loss of a typical child), accepting or having peace with the diagnosis and daily dealing with Ds and the future - which is always unknown.

From my perspective:
Being a parent guide or support person for families who receive diagnosis or anyone at all who might need support with Down syndrome and even the educational aspect for my role in being an advocate perhaps puts me in the position I am in with where I am with how Ds affects us (as opposed to effects us because it really is about influence rather then cause or result which equals effect).

I chose Ds if that is what I can/should say.  I knew full well my son was going to be born with Ds via amniocentesis, and quite frankly we weren't devastated but I used the word shocked because we really were shocked!  But never sad, or mad or angry with Ds.  I think when I cried at first, (now looking back) it was because I knew both my own mother and mother in law would want us to terminate, and we already knew in our hearts and minds that we would never do so.
In fact, and many people might really not believe this, but recently with my becoming pregnant my husband and I actually would welcome having another child with Ds.  Ds is so much a part of our lives as much as it isn't a part - if that makes any sense.  Most often I read that people feel that for themselves a way of determining if they have come to terms with Ds is when they don't think about Ds any longer when they look at their child.  But for us, it's quite the opposite.  We think about Ds all the time because we want to advocate and we want to teach and educate... so Ds is always in the front and foremost parts of our minds.  I don't think I will ever look at Hunter and not think about Ds, but for us that thought was and is still never negative.  I don't look at my son and think - I wish he didn't have Down syndrome.  Instead, I look at him and think, I wonder what great things he will accomplish, will I be the best teacher I can be for him?  Can I continue to keep my expectations high so that he can achieve higher?  I know that many mom's always think, it's going to be rough down the road when people may verbally or emotionally mistreat their child, prejudge their child or whatever else that we all read or think of on our own or by ourselves, but the truth of the matter is, I personally recall many hurtful things that were said to me as a child and I didn't have an extra chromosome.  So, in hindsight I think it matters not what you are made of, how your chromosomes are aligned or what other instrument of malice people wish to use against one another - kids will just be kids, people will be people and the world is full of others who have narrow minds and are prejudiced, racist or disrespectful for one reason or another.  Ds is no different in that specific respect.  Name calling, disrespecting, not getting jobs etc.  These all happen to others with or without Ds, so I think the while the reasons behind my son's potential hurts from others might come sparked additionally from his extra chromosome, without it, he'd just be hurt from other inflictions that probably have nothing to do with Down syndrome.

Maybe I am not making much sense but I just wanted to say - as I think many often do, loving him for us is no different and because of that his Ds matters not to me in that way.

Now, on the flip side to my opinion above, I wanted to also note that the opposite is still true too.  And this is probably more often the reality that comes associated with perspectives of a parent to a child who has Down syndrome or at least more often in the beginning.  My husband has a male co-worker who has a child who happens to have Ds also.  My hubby noticed this in one of the man's family photos that My husband happened to ask him one day if his son had Ds.  The co-worker was immediately angered and extremely defensive asking "why did he want to know?"  It wasn't until my husband said that our son also has Ds that the co-worker relaxed a bit and said yes, but was still hesitant to speak about it.  That was over a year ago.   Some time down the road  after my husband had noticed the co-workers initial defensiveness, he mentioned to him that I run several Down syndrome support groups and also counsel families with new/existing diagnoses if he or his wife ever wanted to chat or come to our child/parent play group.  Sadly (but understandably) he adamantly refused.

It goes to show that there are many people out there who are still very angry with Ds as this man clearly was and still is - even after 5 years... his son was 5 years old at the time my husband mentioned anything to the co-worker.  I have no problem with people being unable to accept their child's diagnosis but what I can't accept is the result of it.  To this day, since this particular man doesn't accept his son's Down syndrome, he will show unconditional and wonderful love toward his other child who doesn't have Ds and will completely ignore the son who has Ds.  It breaks our hearts.  Not only does the man still become very angered and defensive (which we understand may be his way of coping with his harsh reality and world) but he constantly only speaks of/about his typical son and as a result his son with Ds is often left all alone with no attention or praise. My husband's boss even spoke to the man about it on several occasions, noticing it for himself too.  The boss said to me just today, "How could he abandon and ignore his son just because he has Ds?"  The boss further said, "I told him off because I didn't like seeing him treat his son like that, no child deserves that...."  This from a man (the boss) who knows nothing about Ds, except through us and our son - who he just loves to bits.  While it upsets me, (and we have offered our ears and support on many occasions) I understand that the co-worker just doesn't know how to cope.  But, regardless - his son needs him and he isn't there emotionally or physically.  Unfortunately I don't know much about the mom, but I am hoping for this child's sake, her emotions regarding Down syndrome is nothing like the fathers.


This is the reality of emotions for some parents who have a child with Ds.  Like it or not.  And while it is completely "normal" to have or harbour feelings of confusion or acceptance - even anger and resentment I don't know where it fits in for me to be compassionate toward this man for how he "treats" his young five year old son with Down syndrome as a result.  I feel for the father and I can comprehend his emotions but I can not accept his actions.  I can feel bad for the father, but I feel worse, fearful, sad and hurt for the child.  And that all equals anger in the end for me toward the father.  We can all be compassionate to an extent in understanding but when those emotions lead into actions or lack of actions toward an innocent child, I have no place or room in my heart for that.

It brings me to my next question, "How long is enough when it comes to grieving and being angry about having a child with a diagnosis that you don't want to accept?"  When is it too long?  When is it no longer okay to have those feelings which lead to or result in emotional abuse?  We have all heard and understood stories of a parent who can't quite bond with their child for whatever initial reason after birth - but as humans we have invisible limitations that set us back on track - where we say, enough is enough.  I wont be sad anymore because my child needs me.  But do we say in someone else's case, "this is long enough" or "now is time for you to care"?  Most often these are automatic time limits that should kick in either maternally or paternally... but what if they don't?  What if that time seems to be never?  Is it appropriate for someone to step up and say something?  Do something?  Who gives the authority to put limits on emotional grieving or acceptance?  I know for me, the answer is simple (if we are able to separate and remove our compassion toward the grieving father).  It's easy for me to say, after five years he needs to get over it and care for his child and treat his child as he does his other - because I did it.....  But who am I?


Tuesday, November 23, 2010

My Journal - Week 66 (23Nov10)

More fantastic YMCA Play to Learn group photos!

Without harping too much about how well my play group is going, I wanted just to put out a quick post about what a wonderful Play Day we had because two dads were there to enjoy the group as well!

My YMCA Play to Learn for Kids with Special Needs is truly not only for Mom's and their kids but also for the entire family as can be seen here in these wonderful photos that Penny took for us all!  John was able to accompany Hunter and I to our Play Day this Tuesday, and Darwin (Penny's husband) is a regular who keeps his son Vaun motivated every step of the way!  Play to Learn is open to all family members and caregivers!  So please make sure if anyone wants to join that they know they are always welcome to do so!

Also a special note for those interested, the Durham Down syndrome Association is putting on their annual kids Christmas party for families of children with Down syndrome.  It will be held at the Whitby Rotary Park - Whitby Marina.  For each child attending, parents are asked to purchase a gift under $10.00 for Santa to give to the child.  The event is scheduled for 2-4pm on this Saturday 27th November 2010.   Any questions can be directed to the Durham Down syndrome Association at www.ddsa.ca  Check the website for more specific details.

And now, here are the recent Play group photos:

Ohhh, I remember this place!  Lots of toys that I like and my Daddy is here with us!

My friend Taylor-Rose and I are playing again!  This time I am telling her about her shoe!

Taylor-Rose & I are having a great chat!  Every week we talk & talk but no one else understands us!

Taylor-Rose is laughing at my funny jokes!  My mommy says I am a funny little boy!

Last time she tried to pull me, so this time I am pulling her to come back!

These are my other friends Vaun, Hayden and Isabella!  We are all learning!

Vaun and Hayden are sharing some eggs!  They are working hard together!

See what my Mommy is holding?  That is the car I love to push around the whole room!

Vaun and Hayden are still working hard and Isabella is enjoying the music toys!

Vaun is working with his Daddy Darwin the other kids are watching Taylor-Rose's Mom!

Daddy is laughing at me and Taylor-Rose playing ball!  We are good at it though!

My EI Jenn is helping us all to learn!  I am going after the ball for us to play with!

Now that I got it back, I will play ball with Taylor-Rose again!  Everyone is cheering!

I am not really sure what my Mommy is showing my Daddy, but it's funny!

This is Vaun and his Mommy Penny!

Here I am playing with the beads!  Would you believe I have one at home that I don't play with?

Don't tell my Mommy that I actually like it.  She will want me to play with ours at home!


Friday, November 19, 2010

My Journal - Week 65 (19Nov10)

W is for Walking!

On Friday Hunter had his usual monthly assessment visit from Jenn (Early Intervention Senior Consultant) and while there isn't much to teach or stimulate Hunter with (since he's pretty well on target) there are other things that we can do to help Hunter along cognitively.  One thing I can say is, showing Hunter the Baby Can Read videos are helping him so much more then I expected that I am proud to say Hunter can actually sight read at 15 months old.  Believe it or not!  I so very much wish I had video recorded my last session with him, but since I was the one who just decided to test him at that moment, it was kind of random.  To back track, last week we went to the Baby Show held at the Metro Toronto Convention Centre to find a tandem stoller and we happened to see Dr. Robert Titzer who is the creator of Baby Can Read.  A little more history on that:  Last Baby Show we had seen Dr. Titzer speaking about his product Baby Can Read which is the reason I went out and purchased it.  This time around, I wanted to first hand speak to this wonderful man and let him know how his product is working.  He told me that I should be playing word games with Hunter using the provided word cards in the package.  So far I had only been showing Hunter the videos on the TV and seeing how much he loved them, I continued to show him more of the videos.  Admittedly, I had not read the full instructions on the package on how to maximize all the items in the program, but Dr. Titzer made sure he explained how I could help Hunter along by using the word cards to see if Hunter was making progress.  In a round about sort of way, I tested Hunter by one day a few weeks back showing him a book with the word "baby" on the page.  I asked Hunter to show Mommy the word "baby" and he readily pointed to the word and laughed while continuously pointing at the word, Baby.  I was so impressed, I knew at that moment he could sight read the word "Baby".  I passed on this information to Dr. Titzer who promptly pulled out his word cards and tested Hunter himself.  Though Hunter was shy and weary of this man, he definitely pointed to the card that said "Baby" when confronted with three different word cards.  Which brings me to the fact that when I showed Hunter randomly about eight different word cards, he selected the proper card each and every time - five out of five requests to find the correct word that I said aloud despite the fact that I had two different cards up along with the one that I asked him to show me.  Again, I wish I had recorded the entire thing.  Five for five, in a row - no mistakes.  I am very proud of my little boy.  Smarty pants.

So back to Jenn's assessment, while we all know that Hunter now doesn't enjoy performing for anyone on command, AND that he doesn't like to be shown how to do things - since he prefers to do them on his own, practise when no one is looking and then just surprise you when he is ready... I decided to make sure that Jenn was able to see that Hunter can walk and cruise on his own.  I dragged out Hunter's walker, which I have to say doesn't get used a whole lot due to my back injuries - I took Hunter out of his caged play room area (which used to be Daddy and Mommy's family room) and into the hallway for him to show off.  I would just like to say for the record, Hunter loves to walk with that thing and I wish Daddy was home more often to help Hunter with this!  I know and blame myself for Hunter not walking independently because I know if I could spend a bit more time with him working on walking, he'd be a pro at it today, independently running up and down the hallways!

When we were showing Jenn Hunter's ability to walk with the walker, (and you will see that we are holding the walker with Hunter but our only reason for holding the walker is because our floors are tiled and though the walker has settings to slow down and also lock the front wheels to prevent it from rolling fast, the floor being tiled makes me think that option might almost useless.  I have no proof that it would run away on Hunter, but I don't want to take that chance.) everyone was pleasantly surprised, especially Jenn who you can hear saying - how this was a first and that she could see just how happy Hunter was performing for all of us!  While the video is only two minutes and 40 seconds long, Hunter actually walked up and down the hall for about five minutes.  I did take three separate videos but I figured it was obvious to post only one.  Immediately after the walking with the walker, Hunter decided that he should try climbing the stairs too!  How crazy!  He was just in a mood to learn and do do do!  Stair climbing (supervised of course) is an excellent way to teach coordination for baby's who are walking or crawling.  It was a recommendation by Jenn and also Hunter's Osteopath who said that learning to climb stairs would encourage him to be able to crawl by using his arms and legs oppositely.  We never did do the stair climbing exercises after the first time we tried it because right after that he decided to crawl independently.  That was what seems like a while back, even if it really was only a few months ago!

So, here is the video that we are all so proud of! 


As a product review - the Little Tikes Infant walker is a terrific walker.  I love this walker because it converts from a flat play centre to a walker with wheel speed that can be controlled from stopped and locked to free rolling.  The walker can be used on all kinds of surfaces from carpet, wood, laminate to tiled floors surfaces.  It took literally moments to assemble with screws and a screwdriver and then apply the stickers for fun.  It can be weighed down depending on how strong or new to walking your child is.  For Hunter, we added a 2.2 lbs weight in the compartment on the front of the walker because we have tiled floors which means the walker could possibly be pushed faster then we would want it to go.  Before Hunter could walk, he enjoyed playing with the pretend mail and doors for the mail.  To this day, (as you can see in his video) he still loves to play with his plastic mail!  From a mother who has purchased different walkers in the past and even used ones that we had received as gifts, this one has been the best. 

Here are some photos of the walker in both positions:
Front view of Litle Tikes walker in open walking position

Front view of walker open with compartments open

Side profile of Walker fully open

Back view of Walker open

Front view of Walker collapsed or closed for infant play

Side profile of Walker in closed position for infant play
Hope you enjoyed this update!

Friday, November 12, 2010

My Journal - Week 64 (12Nov10)

Update on our littlest developing bean....

Today I had yet another ultrasound, (just a reassurance and protocol when you have a high risk pregnancy) and once again walking in to the appointment, I was so very worried.  During these early weeks, my rate of loss has been high so when I have ultrasounds, (which should be an exciting time for any expecting mom) for me is always full of worry and fears.  I do have great news however and was able to get another sonogram photo.  Our littlest developing family member is continuing to grow properly and is developing right on track according to the technician.  This baby's heart rate is an outstanding 176 beats per minute which is very strong and nice.  There are tiny legs and arms developing which the technician kindly showed me during the ultrasound.  The growth is still a little ahead, dating at 8 weeks 1 day instead of 7 weeks 5 days, but that just continues to show that our baby is growing as it should.

So, while I am still waiting for some of the photos of Hunter from our Play Day at the YMCA, I am going to jump in here and post this newest ultrasound photo to share with you all.

Pregnancy Gestational Age 7 Weeks 5 Days

Now, I guess people are wondering if I think this baby is a boy or girl.  I will say this, each of my pregnancy symptoms of the 5 pregnancies that I have been though have all been different.  With Hunter, I had absolutely no morning sickness, only one day of nausea (that I can recall), some insomnia and fatigue combined, food aversions and felt absolutely fantastic health wise - the healthiest I had ever felt in my entire life.

My second pregnancy I had extreme fatigue, daily nausea and morning sickness which would actually wake me out of a dead sleep, and feeling of complete general un-wellness.  (An absolute total opposite to my first pregnancy).
The third and forth losses were too early to have many symptoms but I did have nausea for both.
This pregnancy, I have had (on and off) slight morning nausea (which only lasts a few moments at most), some fatigue, and fluish tiredness. 

As a result of these wacky symptoms I can't tell if I am having the general predictable old wives tales girl or boy.  Somehow with Hunter I knew I was having a boy.  I just knew.  People might not believe that I actually had those feelings so strongly that before we knew for sure, I purchased blue items such as his bath tub and clothes.   My feeling was so strong that I had no problems choosing colours directed to the gender before knowing for sure.  There was a special deal at Toys R Us, where you spend a specific amount and you could get a bath tub for $10 dollars and they had both Pink and Blue tubs.  My mother told me I couldn't choose yet, because I didn't even know what the sex was, but somehow I knew.  I told her I was taking the blue because this baby was definitely a boy.  Something said and pointed to having a boy.  The second pregnancy (to me), completely pointed to having a girl.  It just made sense to me since it was so polar opposite to the first, which made me then surmise that I was having a girl.  This time, I am at a loss.  I have heard all the old wives tales that suggest high heart rates are girls, heavy morning sickness are girls which I do not have (but while I know first hand that this is not true in all cases, despite there now being scientific proof that says if you have extreme sickness, its been proven that you will more likely have a girl).   I do notice one thing, I seem to actually have a craving (if you can call it a craving) for some spices or flavours or hot sauces that I usually don't have.... But otherwise I do not have any food cravings.

What do you all think this time around?  Do you care to wager a guess or your thoughts based upon my symptoms or lack of symptoms?  I am intrigued with what everyone thinks!  Post a comment below or vote in my new poll on the right side bar of the blog.

Personally if anyone is curious as to what we hope for, while most parents say they wish for one of each, I (and John) personally want another boy.  Perhaps for me, this wish is out of sheer convenience and also my tomboyish personality, but it would definitely allow us to save a bit, since we happen to have boy things.... BUT, having a healthy baby is my number one concern or wish since I have yet to have a typical pregnancy.  I am sure that Hunter would be happy to have a sibling no matter what the gender, and obviously we would be too.

Thursday, November 11, 2010

My Journal - Week 64 (11Nov10)

Milestones and a multitude of doctors appointments!

I have been so consumed with appointments this past week that I haven't had much of a chance to blog.  But this one has been worth the wait, I think.


For the last week, Hunter has been using a word properly and repetitively!  It has finally occurred to him that he can say things and use them appropriately!  Along with waving to people to say bye-bye, Hunter is now saying "Bye Bye!"  I am amazed that this little boy, does these things so correctly and appropriately - and more impressively, just like that.


It may seem that way to me, but I laugh because it really isn't.  Hunter has this way of doing this... he practises.  He will talk softly to himself (sort of practising under his breath) or sing to himself when a song is playing.  At one point Rafi was playing on our CD player and Baa Baa black sheep was on.  Hunter decided that he would sing to himself very quietly and it appeared to me that he didn't think anyone was listening.  You literally have to sneak up on him, and listen ever so patiently and you will hear him signing!  It is the cutest thing.


It isn't a surprise that Hunter can say "bye bye" since each and every time I tell him to say "bye bye" to Grandpa or anyone we are walking away from, he just recently decided that he should actually use his voice and say the words along with the wave!  Now, it's not quite "B-Y-E" but it's actually coming out "Baa baa".  Either way, we know Hunter actually means "Bye", since he is waving when he says it.  The fumiest thing is, he loves to do it to Grandpa and Grandma, (and anyone else that he sees leaving or he leaves) but not to Mommy!  I wonder what's up with that?


To me it's just another wonderful Milestone that I fully appreciate him learning and doing.  On the walking front, Hunter seems to be quite content to cruise the furniture, or stand on his own for just a few seconds and then plop down on his butt.  I know full well that his walking will come in time, and if I had a better back (to bend over and help him) it may have come sooner since I could have helped him to work on it.  But unfortunately, I am very limited to how much walking help I can give him.


On the food front.  I just realized that I should be giving Hunter more "table" food then I am.  Our Doctor advised us at Hunter's one year checkup that I could give him anything we eat.  I really didn't want to push the food with salt or anything that he didn't need, so I kept on with the baby foods.  When I read on Baby Centre (one of my Down syndrome online groups) that mom's were giving their child of 13-20 months all kinds of adult foods from the table, I decided to kick it up a notch.  In fact tonight, I didn't give Hunter any baby food at all, and instead I gave him pasta with a banana.  He loved it!  I guess it kind of explains to me why he only weighs 20 pounds, when according to typical growth and weight charts he should be closer to 24 pounds....  So, I will give Hunter our food to eat for dinner nearly every day and give him the jars of organic baby food only once and a while.


This past Monday, I decided to bring Hunter to the doctor with me for my appointment.  Hunter has had a "snorky" nose (I call it) for over a month and some interesting "fishy-tuna" smelling breath first thing in the morning for the same length of time.  Upon researching this fishy smelling breath (only in the morning) I learned that he might have a sinus infection which may need antibiotics to clear it up.  So, after explaining all of this to our doctor, he gave us a prescription for Amoxicillian for Hunter for 10 days.  Remember that Banana liquid stuff that Mom always had to give us that was put into the refrigerator?  Well it's that same stuff only it's no longer banana flavour, it's fruity.  (Yuck, I prefer the old banana....)  I also decided to ensure that Hunter finally got his blood testing done for Hypothyroidism... which I should have done before one year of age, but it always slipped my mind.  This time I remembered and got the blood requisition to get it done.  Now, all parents know (or most know) what it's like to have a baby get a blood test....  There is one thing I suggest to any mom who has to go through this.  Do not be the one to hold your child down... be the rescuer!  For some really silly reason, I listed to my mother who said, "You hold Hunter okay?" and like a silly child listening to her parent I complied.  Imagine what Hunter was thinking... Moooommmmmmmmyyyyyy???  Don't let them hurt me...... Whyyyyyy are you holding me down??????  And there was Grandma, standing right in front of Hunter, saying "It's okay love, Grandma is here...." and me holding him down saying "Mommy's here...." - Ya, mommy's here helping them torture you.... Then when the blood test was finally done, and Grandma reaches out those warm loving arms, guess where Hunter wants to be?  Not in mommy's! 



Tuesday we had our YMCA Play to Learn group and Hunter discovered a new toy which he absolutely loved and wanted to take home with us.... It's a toy which has four wheels and a handle to push along on top.  Hunter pushed and pulled this thing all over the play room and did not stop for hardly a moment to do anything else!  He did however, work his way over to the table where Sue (the manager of the Pickering YMCA Early Years centre) was sitting and he pulled himself up to see her and stood there to play and chat with her for about 10 minutes!  It wasn't that it wasn't exciting that he did that, but Jenn (Hunter's EI) had been trying to get him to do that for her (for at least 15 minutes earlier) and he wouldn't have any of it....  What a turkey!!  Then, for fun I decided to see if Hunter wanted to try orange juice.  Not only did he try orange juice but he drank it from the cup!  Now, let me just say that drinking from a cup today was not Hunter's first time.  His first time using a cup was when he was just days and weeks old.  (I know technically that doesn't really count, but for the record, Hunter has experience.)  So, I figured we would try and see how much of that experience he recalls... and it would appear that he fully recalls how to use a cup to drink.  Again, not surprising to me.  What was funny was, after he drank from the cup - he thought he would be a jokster and then spit it out all over mommy... just for fun.  If you are wondering how I know he did this purposely, it's because he managed to properly drink half of the cup of orange juice over 10 minutes and then for the last couple of sips just experiment and spit it out at and on me.  Not something that usually happens after doing it successfully.  That is something I would think would have happened first, not last.  And further, it happened exactly when Penny decided to take a photo of the event.  No further explanation required.  Hunter is just your typical photo Ham.  I can only assume what my son was probably thinking at that very moment... They want a photo?  I will give them a photo....!  Yes, cute, very cute Hunter!  (Pictures to follow).



Wednesday Hunter had his follow up Audiology appointment for his hearing.  All was going well until I told the specialist that he might have a sinus problem and she suggested we check his pressures in his ear to ensure that there was no fluid in there.... Well you would have thought we were torturing this boy.  He screamed and cried so hard - you would have thought he was getting multiple injections or something worse!  She was able to get a reading on the left ear (which was normal) but he would not let her do the right - at ALL.  So while he passed completely his hearing portion, the pressure of his right ear will have to wait until next time....


Wednesday afternoon (after the audiology appointment) we decided to take a peak at Pickering Town centre for me to check out the Dual Strollers.... But being pregnant - hunger seems to creep up at the most inopportune moments and we stopped in the food court to get a bite to eat.  I noticed the Durham Region of Health was also there giving out Flu shots AND since I have pregnancy brain and I forgot to get my Flu shot on the Monday's doctor appointment for both Hunter and I, it was perfect.  You might think, after having a very upset boy from only an hour ago with the hearing test, I would be more logical and not torture my son any more for the day - but nope... I was inconsiderate a little more that day and wheeled us all in to get our missing and forgotten Flu shots.  So thinking back to the blood test on Monday, and having spoken to friends at the play group on Tuesday about the blood test episode, they tell me - give Hunter to someone else to hold and you be the saviour after the bad stuff!  So, thinking ahead, I tell my mother, "You hold him for the Flu shot this time, and I will rescue him!"  Mom just shrugged her shoulders and said okay.  Thinking to myself, this time I will be the hero and comforting arms, I smiled.  Would you believe, (and this shouldn't be so difficult for me to believe from all the past shots he has endured) he sat there laughing and playing with his piece of paper, not even fazed by the injection.  He didn't even make a peep or flinch about the needle.  Just goes to show you how silly that is... scream to get something stuck in your ear, but smile when you get an injection needle?  How completely confusing.  I can't win!  You can't plan for that kind of stuff.


So here we are today and I finally have time to post my brags about the newest milestone of saying "Baa Baa!" and all the other events of this very busy week!  And it's not even over yet!


Friday will be another busy day, I have my next ultrasound appointment and then we are off to the Baby Show on the weekend at the Toronto Convention Centre to hopefully find an excellent deal on Aluminum Tandem or Dual strollers.  Speaking of tandem strollers, if anyone is interested in purchasing a Brand NEW Tandem Graco Deluxe Stroller, I had purchased on earlier this year (still in the box, unopened) which I can't use.  Now that my back in really very bad, I have to invest in an extremely light weight aluminum stroller.  Otherwise I am going to attempt to get Toys R Us to take it back (which I am past the return time frame) for a gift card instead or worse case list it on Kijiji for sale.  It is a beautiful and fantastic stroller but it is not light enough for this mommy with her very injured and degenerative back.  If not for my back, I would have kept it, but I simply can't handle that on my own now.  So, if anyone out there is interested in purchasing a Brand New tandem stroller, email me - tkd73@sympatico.ca.

And since I don't have any really new photos of Hunter until I receive them from the play group day (our friend Penny), here is one of my belly, which decided to "pop" out already.  I call it my micro baby bump!

Pregnancy at 7 weeks 6 days (micro baby bump)



Until next time.... (When hopefully I don't have so much to say and overwhelm everyone!)



Wednesday, November 3, 2010

My Journal - Week 63 (03Nov10)

National Down syndrome Awareness Week Nov 1st - 7th 2010

Starting this past Monday November 1st to November 7th is National Down syndrome Awareness Week.  This is a time where all people can advocate, educate and promote Down syndrome awareness.  Even The Toronto Globe and Mail newspaper has dedicated an entire full page advertisement for the Canadian Down syndrome Society to promote Down syndrome Awareness!


An entire page dedicated to Ds Awareness!

I even sent a message to the Globe and Mail requesting them to either publish one of my articles or to do a local story about our family.  It was a long shot and I have yet to hear back from them, but in all fairness I didn't give them a lot of time before this actual week.  So, perhaps at some point one of their many (15) personnel might contact me for a story in their paper.

Onto some other news for today, I had my first ultrasound for my pregnancy.  Because my pregnancy is so high risk, due to my own genetic mutation (MTHFR) and other health issues my Obstetrician decided to do a very early ultrasound to make sure everything is on track this time around.  While very excited to have this ultrasound, I was actually even more worried and nervous.  At this time before I had either lost the conception or had a fetal demise.  So, with all the past in my mind, staying positive and hoping for the best is a hard thing to do.  But somehow I managed to do so, along with my MIL who came with me to provide moral support.

After 32 ounces of water, and a very full bladder later, I had my ultrasound.  I literally held my breath, waiting for some news, any news that could and would be good.  The technician knew of my past history and was very understanding of my fears.  She immediately pointed out that she could see a heartbeat and then confirmed the beats per minute not once but twice to reassure me.  A healthy and strong 122 beats per minute was the number and I heaved out a huge sigh of relief.  I can't even begin to express the relief that washed over me in that moment, but it was like watching colour come back into a person who had been scared to the colour of death.  I am also so happy to report that even though the technician was not supposed to print me out a sonogram photo, she did anyway.  Something for us to keep and keep hope with.  Here is the photo of our littlest developing family member.

The tiny "bean" inside the dark circle is our fetus!
I know for most people who have not seen an ultrasound image, they are wondering what the heck they are looking at.  At this stage, our fetus is little over half an inch (0.6 inches) or about the size of a lentil.  Despite being such a tiny thing, the heart is already beating strongly and arms and legs buds are now developing and within a few days will be moving thanks to new muscle fibre connections being established!  How exciting!

Well, this is our first image of our "to be" new addition to the family.  I hope and pray that things go well this time around.  All the right medications, injections (yes daily injections in my tummy) and doctors are all lined up and being done.  So, everything that should be done is being done.  Now from here on in, it's all about hope and positivity.  I hope you all will hope and be positive for us too.

It's all about family and taking it one day at a time is all we can do.

Mommy and her boy.  Love Love Love.

Stay tuned!  More updates on the way.


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