I thought I would do a short post just to inform everyone of Leah’s hospital check. On the whole Leah is doing great except for her Obstructive sleep apnea, things have not changed much so with the advice of the doctor we will be going ahead with the surgery which is scheduled for the 17th of July.
I am worried and I hoped that things would improve, but as much as I wanted to avoid the operation things have in fact gotten worse over the past few months so it will be out with the tonsils, adenoids and tubes in the ears.
Leah’s growth has not changed much her height is 28.82 inches (73.2cm) and head circumference is 20.87inches (53cm)
So we have one more visit for a final assessment before the operation in the first week of July, thereafter we go ahead as planned but I will keep everyone up-to-date over the next few weeks. So that was just a little update on our mid year hospital visit at the genetic clinic.
It’s been very busy over the past few weeks and I must admit that I have neglected the blog a wee bit!!! But here we are back on track. Besides being busy and finding myself utterly exhausted at the end of the day, it’s been pretty good in the Kay household.
Leah is growing up so fast and becoming a “little miss madam”, her vocabulary has multiplied by leaps and bounds, so there is no way that we can misinterpreted what she is saying to us. She has become very demanding in her requests, a prime example will be wanting her bottle, if she does not get her bottle within 5 seconds of her asking for it, she will go into the “I want my milky, I want my milky, repeat myself over and over mode” But I, have developed the “blank out repeat mode” where I don’t hear the moaning…. I figured it’s the only way she is going to learn that sometimes you need to be patient in life.
She has gone into the doll-playing phase, and just loves wrapping the doll in a blanket and singing the dolly to sleep, and of course all the dolls are named Leah. Leah has developed a love for cleaning as well, so dusting (the same spot for about 15min) sweeping and drying dishes (the non- breakables) are amongst her favorite tasks. Recently she has decided it would be fine to refer to Mommy and Daddy on a first name basis, I do remember Simone and Nicole doing the same so Im not too concerned, as this too will pass (I hope).
There are a few bigger issues that need to be addressed. First is the dreaded potty, there has been lots of potty advice doing the rounds on the blogs and I absolutely enjoyed all the stories and advice, but for us it’s a firm NO right now, Leah has told me that she “no go potty” (with anger I might add) so I guess its no use forcing the issue, she dose however enjoy wearing her undies over the diaper. Second would be the bottle and the pacifier issue. Our home (grandma as well) is stocked with at least 5 pacifiers, even with all this back up stock we often find ourselves working as a team crawling on all fours searching for the pacifier, while in the background not to far away we can hear Leah screaming her lungs out “pretty much like the day she was born” I would compare her pacifier to the mute button on our television remote there are times that the volume needs to be turned down and Leah seems to have no concept of volume, and sometimes mom needs some quiet time to reflect….. I’m still not quite sure what I am reflecting on… 
The biggest of all issues we are trying to overcome will have to be the “bed”… Leah has found our bed to be very comfortable…that means between mom and dad is very comfortable. I sometimes wonder how this little body manages to use most of the bed space?? Ashley and myself have developed the art of sleeping “on the edge” and sometimes when we do roll into “Leah area” she does not hesitate to ask us to “ move… me squashy”. She does fall asleep in her own bed, but she somehow has a built in “mom and dad are in bed detector” so the most time we have to make full use of the bed space is about 10min, after our 10 min bed stretch we will feel Leah climbing her way up the foot end and eventually takes her position smack bang in the center. So on this issue I would like to know if there are other “middle sleepers” out there… maybe I will feel better knowing that im not alone, or maybe someone can tell me how to get her to sleep in her own bed!!!!
Last but not least, and also the cutest…Leah has also been taking note of all the girly things that happen around her on a daily basis and she just loves to Re-enact what she has seen, sometimes I wonder if we have a little Makeup artist in the making….
On a resent visit to the mall, I noticed that almost every person I walked past took a back take when they saw Leah, some just using their eyes as they walked past us, others even went as far as stopping to stare…. I don’t want to sound like im exaggerating about this matter; most of the time I just keep quiet because I feel that all people ever hear me speak about is Leah and Achondroplasia!
I feel I have to vent some feeling on this post. The reason why I know that the stares were more noticeable is because my six-year-old daughter Nicole turned to me and asked why everybody was looking at Leah? This is when I realized that there are no more … “I cant notice so much” or the “im not quite sure” stares, this was Official Leah has taken on the full appearance of a “little person” and the reason why its not noticeable to us as her family is because we are with her everyday we don’t see her as being different.
I have brought this topic up during a conversation with one or two of my acquaintances and I was told that being the parents of special children we (the parent) tend to overreact to the “staring thing”, and sometimes people just stare, they don’t actually mean anything by their reaction. At the time of that particular conversation I thought that maybe this person was right and just maybe I am overacting…. but today after some long hard thinking I beg to differ. I distinctly remember one of my first “childhood life” lessons taught to me by my parents, and that was not to “STARE” because it can be considered rude, and if you do happen to see something that you would like to know more about, ask your questions tactfully in order to get an answer.
Society tends to dictate what is “normal” and “acceptable” and I know that there are some individuals out there who believe that people with physical and mental disabilities don’t have much purpose or value in our society. I was once asked the question of weather I would send Leah to main stream or special needs school, when I gave main stream schooling as my preference for her, I was horrified at the reaction I received “ Why would you want to main stream Leah when clearly she is not going to fit in”…. “Why”… There might be social acceptability issues because she looks different??
SHE IS SHORT!!!!!! Leah is not mentally or physically challenged, who gives them the right to decides who fits in, and what is socially acceptable?
I have come to the realization that I will never be able to change the way strangers react when they see Leah for the first time. I sometimes wonder if I have worked through all my emotions regarding Leah’s achondroplasia, I know that there are some issues that will stay, the biggest being the sense of protectiveness, I will always be protective of her, especially while she is to young to defend herself. I have promised myself that I will raise her to believe that she will be a fully capable young woman who can do anything she sets her mind to. It is disappointing that some people will never change and they have made up their minds as to what is acceptable and what is not, sad thing is there are so much more to life, and they will never experience the true joy of being free spirited, their judgmental ways will consume them as they try to fit into a world that they believe is perfect.
So I say thank goodness I am not one of them… those are the people I fight against, I have made it my mission to raise awareness about Dwarfism, and I will fight to have my child live and enjoy life just as any other “normal” child would, with the freedom of choice to do what she feels will fulfill her dreams.
My hope is that instead of a blank stare, come over and ask her name so that next time you see us you will say, “Hey look its Leah”, instead of “Hey it’s the little Dwarf girl oh shame”. I really hope that this day comes soon because Leah is such a blessing to us, and we would love to have her touch your heart and be a friend and blessing to you as well.
When Leah was about 5 months old, we decided to get 2 Goldfish for Nicole and Simone. I clearly remember our trip to the pet store and how the girls spent hours trying to choose 2 fish from an aquarium that must have contained hundreds of the little creatures, but eventually a decision was made and so we welcomed Goldie 1 and Goldie 2 as our new family pets. Last year while I was away in Hong Kong I returned home from my trip I found the fish tank only contained Goldie 2, I was told that Goldie 1 had mysteriously passed away, and from what we were told by Dad its was peaceful departure. We moved on …and Goldie 2 worked through the grief and after a few days had become her usual “happy fish personality” again.
This past week we noticed that Goldie 2 had started to behave strangely, she seemed less happy and excited, she would stop swimming and stare into space and I knew from those signs that it would only be a matter of time and we would have to bid farewell to our little fish friend. So I prepped the girls so that it would not be to hard to handle and they spoke to Goldie every night during her last days.
Friday morning we woke to find that Goldie had slipped away peacefully during the night… and we decided seen that we never got to say goodbye to Goldie 1 we would do the right thing and give Goldie 2 a honorary Goldfish farewell…..
Leah at 5 months old with Godie 1 & 2
A sad last moment
Leah saying goodbye to her fish friend
Goldie makes her journey down the porcelain express to fishy heaven
The Excitement is sprouting….. we don’t have an official name but its safe to say that our Little People support group is official, we had our second get together on Saturday and although we are only 7 families we are positive that we are going to grow and grow.
Red Cross Children’s Hospital has given us their support by allowing us to use their facilities for our meetings, they have offered support in the form of Genetic counseling , occupational therapist the use of the play room and boardroom …. (and so much more )
Heather (Danielle’s mom) got in contact with Dr Fieggen of UCT division of human genetics (Dr Fieggen runs the genetic clinic at Red Cross and she is familiar with most of our little ones) and Dr Fieggen expressed how excited she was at our efforts and she has offered to make contact with any new or old parents on her database to inform them of the support group.
We had many areas to discuss at our meeting and we are about to get things going…. so there is lots of work ahead but its all good!!!!!!!!!!!! And im so excited to be part of this vision….
Here are some pictures or our little ones in Cape Town South Africa
(and what a active bunch they are!!!!)
Joel, Joshua and Martinque
Leah and Danielle
Martinque
Hamaz, Martinque and King Joel
Ashley giving Joshua a helping hand
Having fun!!!!
Its been quiet for the past few days, but there has also been some exciting developments taking place. We have officially had our first parents of little people support group meeting!!!!!!!!!!!!!! it was fantastic even though we were only 8 parents we see it as a fantastic start to something we hope to grow!!! for the moment Leah is the baby of the group and in all the excitement I realised I never took one picture , but not to worry im getting some of the other moms to e-mail me a few pics and I will be sure to post them as soon as I can.
As far as Leah’s progress, well she still has no interest in the potty!! I have been trying but all she says is “no go potty”, the interesting thing is she cant stand the feel of a wet diaper, so ever so often we will find our little one running around the house missing this crucial piece of moisture capturing clothing. Recently I have discovered the cutest limited edition Huggies diapers which look like little denim shorts, and would you believe she keep these on even if they are close to exploding…
She has also been trying hard to dress herself and finds it awfully funny when her head won’t fit through the neck hole!!
Leah has also found the perfect resting spot after a long day of making mummy run around the house, so the arm of the sofa has become just the right spot to catch up on some well deserved shut eye
We have been struggling with some nasty ear infections to be more accurate we have had a total of 5 ear infections since the beginning of this year , Leah’s will be undergoing surgery for her tubes, tonsil’s and adenoids on the 17th of July so I guess I have to be patient, I just wish we could get a sooner date and July is also our peak winter season and having a operation in winter just seems so harsh so hopefully with a little persuasion I can get the doctors to move our date a little closer!! So besides all the medication for pain (ear pain) Leah has created her own way to ease her ear ache…. she fold her ears!!! And I was wondering have any other little ones done the same?? so I find myself up at night unfolding her ears, because the last thing Leah needs besides the short stature is the have cauliflower ears!!!
Over the past few months, I had been receiving some ugly comments on Leah’s blog…. the person sending them was not to clued up on how blog comments worked because little did she know that I have to moderate them first before they could be viewed by the reader… Unfortunately I was still subjected to reading what this sick person had to say about my family and especially about Leah.
I remember sending an e-mail to Tonya (Knoahs mom) asking her if she had ever been in this situation. I initially thought it was as sick person like the one who had stolen pictures from the LPOA site to create that nasty website aimed to poke fun at people with dwarfism… I tried to trace the e-mail address were the comments were coming from with the help of a very clued up computer whizz friend, he concluded that it was someone in South Africa but that was the only information he could come up with.I decided to e-mail the address and to all my friends with the hope that they might recognize it from somewhere.
You decided to forward a joke to a few friends from this “spare” e-mail and that’s when I received the call early Sunday morning informing me that I do in fact know who the user of the e-mail adress is and the joke was copied to me as proof…. So I went onto my facebook account to announced that I had finally traced to sick person who was commenting on Leah’s blog “I was shocked that you called me to ask who it was when you knew very well you were the culprit …
This is for you MY SO CALLED friend
• You called me “An attention seeker”
• You mentioned that there will always be “employment for M*#%ts at the circus as they are good for a laugh”
• You said that I should go to the vet and ask them to “Put my broken bird down”
• You said “stay away from sharp object her “fat head” might pop”
The wont post any more as some comments are really graphic….
Dear Friend
I trusted you, I confided in you, you held Leah in your arms when she was just 3hrs old… you said she was special and called her your little butterfly.
When I asked you why you did this you said, “Im tired of seeing Leah get all the attention and my child is always ignored when she was around.”???????????
Did you ever stop to think that it’s not the type of attention you think it is!!!!!!!!
Leah has to go through a lifetime of nasty stares and comments were as you will walk through the mall not having to hear “Oh shame she’s so small” “Oh look at here big head”
Dear friend I know you will read this…. my only regret is that I trusted you and I wish I never did. I guess its true when they say,
“Your lies will catch up with you”
I wish you and your family well and I hope you don’t do this to someone else because you will never know how much you hurt me.
My little sister Eunice (who is all grown up now) has chosen a career path in photography, this means that ever so often the girls become the stars of her work….. Eunice has recently been voted top of the class and been called a “natural” when she has the camera in her hand.
One of her recent assignments was to shoot portraits that depict love… the lecturer said he wanted to be able to “feel love” by looking at the shots…… needless to say I saw the finished product and was quite surprised and I see why they say she is a natural!!!!
I Cant wait to have my very own Blog photographer!!!
Eunice at work
The picture that made Eunice top of the class
Now we just need to get our little model to part ways with the pasifier !!!
A while back … well make that about 6 months before Leah was born we did a renovation to our bathroom. We completely guttered the place!!! And I mean we even went a far as ripping out the ceilings!!!!
At that stage of my pregnancy we were not a aware of the “Little person” that was to enter our lives…. we just knew that it was going to be a “new little person” that would grow up as fast as the other 2 “little persons” we already had… but as we all know it was a “little one” who would be little for a long while .
The most amazing part of this renovation is… The toilet that was delivered was the wrong height it was far to low and they installed it without us being there so once it was in it was to late to replace with a higher seat (which was our original order) and the clip that holds the hand shower attachment was placed in the wrong position and we could not alter that fitting because that meant we would be left with a hole in the wall!!!!!!!!!!!!
So there was a few thing that did not go according to plan…. Or so we thought!!!! A perfect little shower and just the right height toilet for when Leah is older… and seen as Leah is going to have to live and adapt to a world created for average height people we don’t mind living with a toilet that is slightly to low and a shower handle that’s out of position… we love and would not change a thing about Leah…. And the same goes for our bathroom.Sometimes things just happen for a reason unknown to us at that specific time
that feels just about right!!
My own shower
having fun in the water
“Welcome to Holland”
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
