My Precious Saira

Do you remember us?

2011-08-14T23:00:00.001+05:30

To my mother,

a beautiful woman who is now the perfect angel. I know you have found peace, a perfect peace.

The day when you had to leave us, I think God looked down and saw how very very tired you were and so He picked you up in His arms and took you home, I suppose He needed you there.

I know I still need you here, I miss you so much that my heart aches constantly. 

But, you have earned your wings and now it’s time for you to fly free. I know you are at peace, happy, you are home and that you aren’t alone.

I think of you all the time in silence and I want to tell you again how much I love you and until we meet again I know God has you in His safe Keeping, but I have you in my Heart always and forever.

Ute Mitra

27th March 1940 - 26th June 2011

It is 7 weeks today since I lost my dear dear mother, a loss I am finding extremely hard to deal with. Her parting has left a big chasm in my life, one I know can never be filled by anyone else. I know she suffered a lot this year, she was sick and in hospital since March and I spend most of my days between work and the hospital, whatever was left was divided between the 2 kids, my husband I have to admit probably got the the least time, but no one expected otherwise. She fought bravely for 4 months, one thing after another, getting over each hurdle only to be hit by the next, her body got weaker as she continued to fight, but never ever did we thing this was going to be a battle she couldn't win. Today I feel lost almost like a child searching for her mother, I think of her all the time but I know she is now truely the perfect angel, she is all around, I can speak to her whenever I want, she continues to live in our hearts and when I miss her particularly much I just close my eyes and feel her arms around me, a comfort and security no one can take away.

On 10th July we had her memorial service and it was touching to see the out pouring of love from so many people and to listen to them speak of her with so much love, to know how she touched their lives in so many different ways and just how very very much she is going to be missed.

At her memorial

I have been meaning to get back to this blog, something kept telling me it's time to write again, I have thought about it many times but just couldn't get myself to, just wasn't ready to I guess. But people have reached out, have asked me how I am doing, what has happened, even said they have missed us here and I know how important this place has been since I started this blog and so I knew in time I would be back. But I just needed some time.

And as for my little girl, she has been wonderful through all this, she continues to be a joy and inspiration to me all the time, shows me the way, reminds me of what is important in this life and what I have to do to make the most of this beautiful gift I have been given.

I am just going to give you a quick run down of things that have been happening over the last months since I last wrote, I won't say too much, as I don't want to make this too long, so just a quick update and hopefully will get to write more in the next days.

We had one birth in March....my little nephew was born, he is already 5 months now. Isn't he gorgeous....

Two baptisms.........my nephews and Sairas

Both my children had birthdays, my son Vir turned 9 on the 29th June and Saira turned 3 on 21st July, very hard birthdays to celebrate without my mother......we just had cake and the family around to support each other.

Saira has reached some new milestones, she walks whole stretches without falling down (providing she walks slowly), she gets up to stand without any assistance, she speaks many more words and she sings beautifully in tune and knows most of the actions of whichever song she sings. She is eating most things, chews perfectly and can self feed dry foods with a great pincer grip. We are working on feeding with a spoon but I must admit I have been lazy probably because I'm trying to avoid the mess I know is going to happen once she is left to her own devices with a spoon. She loves to stare at herself in the mirror and has long conversations with herself along with practicing all the different faces she knows on herself.

She loves to look at her books and pretend she's reading.....

Saira still loves going to school, she is really a very out door kind of girl and so anything that takes her out she's happy with, but she also enjoys the company and the structure in her life, getting up brushing her teeth eating breakfast getting ready for school and then she's off for the morning. As for learning, well I hope in the process she is actually learning something but I haven't been too stressed about that, I think the social interaction is doing her a great deal of good. They take attendance everyday at school by calling their names and they have to put their hands up which I believe she does, I was so impressed when I heard that.

I feel there have been so many changes over the last months, some have happened without me even realising they were taking place, I was so busy with my mother, so caught up with something in my life falling apart. Saira had a very very special place in my mother's heart, I know how much she meant to her, I know how she absolutely adored Saira, I just wish she were here to see all these changes, to see her walk, to see her sing, to see her try and talk, it's so bitter sweet for me. But at the same time I know my mum is constantly watching over her, I know she will her angel all her life, her very own angel, so everytime we celebrate another milestone I know she is celebrating with us.

Sleep study

2011-02-20T12:03:00.007+05:30

We got back about 8.00 this morning after Saira's sleep study well it turns out she didn't actually have a sleep study it was just a Pulse oximetry test, for some reason they said she was too young for a sleep study, but after consultation with the doctor today they are going to try and set up a proper sleep study for her. Anyhow we left before her doctor came in this morning, Saira was awake and I wanted to get out of there and home as quick as possible. The night was pretty awful for me, only because I kept looking at that silly machine the entire time and the funny thing is that this is the way she sleeps every night but because I don't have some machine showing me counts I don't really know what's going on and well it doesn't disturb me as much as it did last night. Her saturation levels were playing havoc, anything between 99 down to 62 and this carried on the entire night, up and down, everytime it went below 79 and the machine started beeping red I was up and pacing her bed. Saira also slept very very restlessly which she does anyway but last night was worse because of the strange bed which wasn't as comfortable as hers and it was an adult size bed so I had to keep moving her as she kept managing to roll uncomfortably close to the edge of the bed, I know the bed had a side guard but I think she would probably have been able to slip through them. The on-call doc did say this morning that he didn't like how much her levels fluctuated and something needs to be done immediately. Later this morning I spoke with her ENT and he has asked us to come in for an x-ray of her tonsils and adenoids tomorrow, he wasn't happy with her O2 levels and we need to discuss this further. Whatever the reason for this happening I need to get to the bottom of it as soon as possible, just the thought of what's happening to her each and every night when she sleeps is really scaring me now. In the meantime I asked if there was something we could do to ease her condition, something that would give her immediate relief of some sort at night but apart from some oral drops, a sort of anti histamine as her nose is really runny as well which might help her a bit while she sleeps but other than that nothing else right now. I guess we'll know a little more tomorrow.

Obstructive Sleep Apnea

2011-02-17T16:13:00.001+05:30

Saira goes in for a sleep study this Saturday, she will have to stay overnight at the clinic, naturally I stay by her side the entire time. Why? Well because we are suspecting sleep apnea. She has always slept very restlessly, snores loud enough to wake up the whole house but recently her breathing has also become so labored and that's really scary to watch. It's loud her chest movements of it going in and out are so overly exaggerated, then all of a sudden her snoring stops and it seems like she isn't breathing and all of a sudden you hear this really loud gasp, she seems to be gasping for air. Then the cycle begins all over again, loud snoring, stop snoring or breathing I'm not sure then gasping frantically for air and this continues the whole night. Believe me I have stayed up at night just staring at her to make sure she's o.k. I keep shifting her position around hoping that might improve her breathing, but it doesn't, sometimes she pushes her neck so far back that looking at it you feel something in there's going to break, or she crouches up on all fours and sleeps. We get this test done and then depending on the results we see what our next step might be, but I won't be surprised if she needs an adeno-tonsillectomy which I am actually dreading. I don't know how many of your little ones have had this surgery I know of a few of you but if anyone could shed some light on the surgery I would love to hear how it went and if it made a lot of difference to their sleep patterns. Also what you felt was the hardest part about this surgery. Any tips will be of such great help. If she does go in for an A & T then she will probably get tubes put in her ears at the same time as she seems to have some fluid as well as have an ABR hearing test done. Anyway I keep saying to myself lets take one step at a time, not to get worry about things before their time, whatever has to be done will be for her best. I just know I can't continue to watch her sleeping the way she is, I am sure it couldn't be good for her either. Will update after Saturday with the results.

Leave you with a picture of my pensive little one

For those who don't know, here's a little on Sleep Apnea and Down Syndrome

Apnea (literally, "without breath") is the term used when someone stops breathing for very short periods of time, usually 10 to 20 seconds. It's termed "obstructive" when respiratory efforts continue, such as movements of the chest. It's termed "central" when all respiratory effort stops. There is also a mixed version. In children, sleep apnea is almost always obstructive. During the apneic episode, the child will have decreased oxygenation of the blood.

Symptoms of Obstructive Sleep Apnea (OSA) are: snoring, restless/disturbed sleep, frequent partial or total wakenings and daytime mouth breathing. Some children with OSA have odd sleep positions, often with their neck bent backwards, or even in a sitting position. Some children with OSA sweat profusely during sleep. In adults, there is an association of obesity, but that's not a common association in children. Some children will have daytime grumpiness or sleepiness, but it's not common. Some children may have noisy swallowing as well.

Children with Down syndrome (DS) are certainly at risk for OSA. In 1991, one study showed 45% had OSA. This can be caused by several different factors present in DS: the flattened midface, narrowed nasopharyngeal area, low tone of the muscles of the upper airway and enlarged adenoids and/or tonsils.

Feeding videos

2011-02-15T14:20:00.000+05:30

Just reposting this as I had two people saying they were unable to watch the videos.....I have no idea why but have uploaded them again and I hope it works now.

Feeding does not always come easily to children with Down Syndrome, primarily because of their low muscle tone. Most children with Down Syndrome have some degree of low muscle tone and and this does not only effect the large muscles like their legs and arms but also the smaller muscles in their bodies like those in their mouth, tongue and jaw. Babies use their oral and facial muscles to suck and swallow, whether it be from a bottle or at the breast. So, if the muscles in these areas have low tone, then the baby will have a weak suck.

Most low muscle tone infants with Down Syndrome will gain enough oral motor tone to enable them to eat on their own. The appropriate therapies are crucial to the development of these skills though.

I feel Saira has come such a long way with her feeding. I remember so clearly that just about 6 months ago she wouldn't even bite a corner of a biscuit, she had no idea how to self feed, everytime I gave her something to eat it was either chucked across the room or she showed absolutely no interest to touch it leave alone put it in her mouth. Today things have changed, she is doing so remarkably, she picks up biscuits or strips of toast or whatever she is given to eat and directs her hand to her mouth, she chews properly, she even tries to pick up food with a fork and put it in her mouth. Saira has worked so hard and I am so very proud of her. I know this might not seem like such a big deal, but believe me it is, as some of you reading this might agree.

We have been doing Sara Rosenfeld Johnsons oral and feeding therapy, chewy sticks, straw therapy and trying to get her on the horn therapy as well but which isn't so easy. But we will keep trying.

Here are a few videos, eating, drinking, throwing food, and the last one you can see what she does when she's had enough of something or doesn't like it, she is quite hilarious sometimes......

Eating, watch her little pincer grip

Feeding her baby

When I don't feel like eating I play with my food then spit it out.....

Sweet Lois

2011-02-04T12:56:00.005+05:30

Heartbroken and devastated.....

Beautiful Lois bravely fought Leukemia but lost her battle yesterday as she earned her angel wings. Lois died peacefully at home with her parents. Another devastating loss that has shaken the DS blogging world. My heart goes out to her family, please visit her blog and leave her family a few words of love as they have to find their way without their precious little girl.

1st day of school and a bit of this and that.....

2011-01-17T10:43:00.020+05:30

I really couldn't put off writing my first post of the year any longer so this one might be kind of long, so bear with me or just scroll down and see the pictures. Yesterday the 1st February was Saira's first day of school and so a great (I hope) way to start my blogging for the year!! I can't believe I didn't manage a single post in January, just wondering what kept me so busy. Anyway will come to that later, first a little about our day.

This is a montessori/playschool that I have enrolled her in and from my 1st impression they seem to be quite laid back and easy, parents or caretakers can stay with the child in the classroom if they so wish or atleast until the child settles in. I think Saira enjoyed herself, she was very interested in everything and everyone around her and couldn't sit still, something she will have to learn to do especially when it comes to taking part or should I say trying to take part in any of the activities they give her. I am a bit worried about that, she seemed more interested in what the child next to her was doing and more intereted in grabbing their activity in front of them than doing her own. O.k. I know this was the first day and she will take a while to adjust into a classroom environment where everything doesn't go as she wants, I just hope she understands that eventually. She didn't pull anyones hair, or scratch anyone which I am thankful for right now. It's hard when your child doesn't walk, but don't for a minute think that that got her down, she held onto my hand and insisted on putting one foot in front of the other, as wobbly as she is but she insisted on walking like the others, when I tried carrying her she kept wriggling down, so she certainly knows what she wants and that is to be no less than the anyone else. She was actually excited being there and she wanted to do everything the others were doing. Just watching her made me feel so proud.

But......yes there is a but, I don't know why I am worried but I am, I can't help it. I keep thinking of how she's going to manage if I am not htere, she is so innocent and so unaware of her surroundings at times I am scared of leaving her alone. I wonder sometimes if we have overprotected her too much, but how don't you protect your child of 2 1/2 who is more like a child of 1 1/2 and who has special needs, I know on one hand I want everyone to treat my child as an equal to other children but on the other I want them to take special care of her, it's a bit contradictory I know but I really do want them to take special care of her . The thought of her being alone there really scares me so I know I'm going to be hanging around for as long as they allow me.

At home before leaving for school

Her 1st day at school, here she's with her new classmates, the boy on her right is the same age as Saira so you can see just how tiny she is

This was today during snack time, she ate so beautifully all by herself!

The whole class during snack time

On to other news on Saira, well she's keeping us on our toes constantly, her walking has progressed to about 4 steps but she still needs to work on her balance which is still very shaky and until then walking is not going to be easy. When I think of it it's strange how she seems to be doing things in all the wrong order, like taking steps before she actually stands! I still am wondering why she is unable to balance herself properly, I believe hearing problems, fluid in the ears and even nystagmus may be contributing factors to balance. She is due her hearing test (ABR) but thanks to a very bad cold right now it's put on hold she also has a blood test in February. Last week she got her Flu shot as well her Typhoid vaccination and as we sat in that waiting room watching smiling babies going in and screaming ones coming out I waited for our turn, this little girl of mine winced, looked rather shocked as they stuck the needle in she but held it together, no tears, I praised her non stop but at the back of my mind I actually wondered about her pain threshold.......

She absolutely loves playing, whether with her toys or looking at her picture books. I think her dolls take precidence over most other toys. We have tea parties for them and she takes such joy feeding each one of them as well as all of us.

She is loves her Signing Times dvd's, she signs "signing times" (well in her own way ofcourse) when she wants us to put the dvds on and it's just so much fun watching her face change as they come on, she especially loves all the songs and signs along as you will see from the videos. I'll post a few more soon.

She has started feeding herself much better now, everything finds its way to her mouth and her chewing has really improved, I remember just over 6 months ago she couldn't even chew a biscuit.

Saira has become a little clingy with me and come evenings she needs to have me constantly around her. She has developed this new cry, its totally silent, her face becomes all red and tears roll down her face and looking at it would break your heart. She doesn't make a sound except for the sound of her gasping for air. I wish I had this to show on video because its worth seeing, but since it makes us so sad to see her like this we do everything to avoid it, even when she goes for therapy and she cries (which she does sometimes) it's this new silent cry, I don't know if she is doing it to get her way around us because she has realised that everytime she cries like this there is so much attention given to her. Kids are way cleverer than we give them credit for at times.

So all in all we are doing well, getting on with life and hopefully you'll see a little more of us here talking about the everyday things that life brings with it.....

Very wobbly very shaky 1st steps.......what an ending to the year!!!

2010-12-30T19:10:00.001+05:30

Saira took her 1st steps day before yesterday 28. 12.2010...and I can't even begin to explain my excitment. O.k. they aren't the sturdiest ones and her legs are kind of all over the place, but the girl actually initiated taking steps, she never does that, she just doesn't moves her legs without being held or holding on to something, she has always just thrown her body on top of me when she's standing at a distance and I ask her to come to me rather than move those legs towards me so as all you DS mommys can imagine this is BIG BIG for me. I know this is the beginning and it might just remain at this stage for the next 6 months but as we say about our kids, they will get there, in their own time and in their own way.

Enjoy, it's just 3 steps so they are really really short so don't blink or you might miss her and excuse the mess

Christmas Pictures

2010-12-27T21:07:00.006+05:30

I hope everyone had a peaceful Christmas.

Here are a few pictures well more like a photo overload from Christmas Eve and Christmas lunch.

A few from Christmas Eve....two of the many attempts at a decent family picture, I wont bother showing you the others.....

Saira with her doll, which was such a success, after this she wasn't really interested in any of her other presies!

She clung on to that thing the entire night

My brother and sis-in-law, proud 1st time parents to be in March

The next day....Christmas lunch, I had more people than space at the table so we had to make it a buffet this year.

....and finally over eaten and crashed out on the couch for the rest of the day

A Candle for Carly

2010-12-26T13:54:00.001+05:30

25.12.2010

In memory of Carly George

Joany Risner-George and her entire family are on my mind as I think of how tormented and painful this holiday season must be for them. I think of how very very much they must be constantly missing their beautiful little girl Carly.

My thoughts and prayers are with them with the families of all those who have lost a precious child, snatched away from them way too early and as they continue to navigate themselves down a road no parent should ever have to travel. I pray for their strength and peace.

2010-12-23T23:10:00.002+05:30

Christmas is two days away, although Christmas eve is what we actually celebrate, so that means it's just a day away, I have a ton of things still to do, I have people re-doing my couches I also have carpenters working in my house, everything looks quite a mess, more like a bomb has hit the place. So yes from the looks of it I'm really prepared for Christmas! The only thing I have done is get the Christmas presents although they still need to be wrapped. But it all has a way of falling into place even if right at the very last minute. As per family tradition the entire family usually meets for lunch at my parents house where my mother out-does herself but this year to spare her the work (not that she would mind) considering her recent heart surgery we are having Christmas lunch at my place and I am sure that in true family spirit there is going to be alot of noise, alot of excitment and well I think it's going to look like what most families kind of look like when there are more than 10 people together in one room....

Saira is well, she still refuses to try and stand on her own, but we're learning to live with that....someday someday she will, perhaps that will be our New Years gift. New Years resolutions? I've long stopped making any, yes o.k. will exercise more, will eat healthy, I think I made those last year.....so this year I'll say no resolutions just praying for a good year, please no surprises, no sadness, I think we have all seen so much sadness this year, it's been hard watching parents going through so much pain, pain that will never go away. We have lost the sweetest angels and I know they say God has a plan but can any parent make sense of this plan? I pray for peace and strength for those going through emotional turmoil, some of our little precious ones have been down another scary road, that of battling leukemia, some are still walking down this road and prayers go out to all of them. I hope this New Year brings with it only good with renewed Hope and strength for so many who have lost it and as the sun shines in the New Year I hope there are more smiles and laughter and there is much to be happy about.

leaving you with a few pictures......

Yesterday Vir has his Christmas concert, for the German speaking students of 4 different schools. Despite being very nervous he did really well and I am so proud of him.

Raoef Mamedov's last Supper

2010-12-20T13:30:00.002+05:30

Click the picture for the full size version.

This is a photographic depiction of the "Last Supper" by Russian Artist Raoef Mamedov, it shows Jesus and his 12 disciples as having Down Syndrome. I really don't know what to make of it.

I've wondered what exactly it was that the artist is trying to say here, I am sure it can be looked at from different perspectives, or is there an underlying message that the artist is trying to convey, leaves me confused. I would love to know what you think of it.

2010-11-23T23:00:00.001+05:30

Can't believe how long it's been since I last posted, it's actually scary how fast time goes by. Another year is coming to an end, and to be honest I did secretly have expectations for this year which haven't all been met. I know we say one day at a time and our children will get there and believe me that is the mantra I live by, but then there are days I wonder and contemplate on what lies ahead for me for my daughter and what life holds for us. I know this is going to be our journey together and believe me I look forward but that does not mean I am devoid of fears, like any parent I do worry about her future, schooling, friends, independence, acceptance the whole lot, and most people who know me would never think looking at me that I have a single worry in the world, and for the most I don't but then there are days when I dwell a little more on the future and yes there are things that scare me, or should I say sadden me just a little.

I am thinking of school for Saira from next year, well it would be a play school and I think she needs the interaction with the other kids but then I think about this girl who refuses to try and stand on her own, what is she going to do in school, are they going to carry her around in the class or will she crawl around while everyone else is probably running all over the place (this is what happens when your 2 and 1/2 year old still can't walk), will they just keep her in one corner till we come get her, although good luck trying to keep her still in one place, whats going to happen during snack time, will she even try and finger feed herself or will she just chuck everything right across the classroom, up above her head and behind her, I mean that's so much more fun, and it's o.k to do as long as you're at home but in school? I worry about the caregivers, will they be patient? kind? gentle with my little girl? I think this is why I haven't even considered play school for her earlier, I know of others who have started with 18 months, perhaps I have just wanted to keep her home where I can protect her. But I can't protect her forever and I understand that.

We just did the GMDS (Griffiths Mental Development Scale ) test for Saira and I found myself anxious for her to perform, but then this girl of mine is hardly going to perform when there are 4 strangers in the room observing her intently, so she goes ahead and does exactly what she wants to, which isn't so bad, shows independence of mind, but not what we were looking for at that very moment. Saira doesn't like strangers and she looks down at the floor the moment there's someone new there with the most glum uninterested expression, no amount of "say hello Saira' 'say hi' is going to get her to move her head up to look at the person. So not always a very positive first impression, which bothers me at times because this girl gives the most beautiful flying kisses and actually says bye-byes and hi's with a wave of her hand, she gives high fives with the biggest smiles, and I want people to see her the way I do but who's going to believe that when all they see is her looking down towards the ground like someone has just told her off really bad, exactly the face she makes every time I tell her not to lick the floor which by the way is one of her favourite pass times right now. Oh God great, so she's going to be crawling around the classroom licking the floor, I just thought of that! This is not helping, all these images no, not good, this school thing is not going to be an easy decision, but I am sure I'll make the right one, I know being around other kids will help, I just need to feel o.k. with it, which I am sure I will in time. Yes they will just have to understand her signs and that coughing means she wants to drink water and I know I'm going to be worried as hell but I need to let go, just enough for it to still be within my comfort zone, because I or someone else will probably be waiting right outside that classroom, but I also know she might just enjoy it and I know my daughter deserves to do everything all the other kids around her are doing, and she might just surprise me with how capable she is. This is about her and not me, I realise it's our fears that hold our children back at times, and it might be scary when we feel our child is unprepared for everything that lies out there, but unless we let them try they are never going to get a change to learn, a change at life, a chance at independence, and aren't those exactly the things I want for her, aren't those the very things I fear she might not have but so desperately want for her. I certainly don't want to be the reason behind her not getting them.

I'm going to steal a quote from Saira's friend Zoey's blog, it's just so perfect.........

"When you come to the edge

of all the light that you know and are about to drop

off into the darkness of the unknown,

Faith is knowing one of two things will happen:

either there will be something solid to stand on,

or you will be taught how to fly."

....so I will continue to believe that my Saira will get there, over many many different kinds of hurdles and I know there are many to come so we have to start with the small ones. Is this a face that says "I can't?"

No it's definitely a "Yes I can" just like the way she can wrestle her brother who is 4 times her size and wow does she give as good as she gets.....so even if it feels hard sometimes, I need to understand that unless I let her face the small challenges she will never be able to face the bigger ones and nor will I.

This is Taylah...can you help her?

2010-11-16T14:00:00.002+05:30

Here's a new picture of Taylah...wow isn't she lovely!! I can't believe how much bigger she looks here. For those who don't know Taylah, she is my Christmas warrior child, I am trying to raise money towards her adoption so that one day she may go home to a loving family, so that she may thrive and meet her full potential. She just needs a chance. Otherwise what awaits her and so may others is scary, its painful to think about their future, it's really grim. By the time these children reach the age of 5 they can no longer remain at these orphanages and are sent off to an Institution where 85% of them don't survive the first year, so you can imagine what these Institutions are like.

Taylah probably spends a big part of the day on her own, she definitely doesn't get cuddles and kisses, she was given away because she has that extra chromosome, aka Down Dyndrome and her parents didn't want her anymore. But what has she done wrong? She is a child just like my own child and she deserves all the love in the world. She deserves a mommy and daddy to hold her, cuddle her, tuck her into bed at night, to take her places, she deserves what each of our children already get....love. Wouldn't it be a Christmas miracle if Taylah found her committed family by Christmas, so if you're in the mood to give please stop by and donate a small amount (can be big too, thats up to you) towards Taylah fundraiser. Just click on her picture on the upper right side bar where you'll come the the Reece's Rainbow Angel tree sponsor page then click on "Click Here" to view all the children, scroll down till you find Taylah's picture click on her name and you will be redirected to her page where you can donate. Or you could just donate by clicking on the chip-in button on the top right under Taylah's picture on my blog. All donations go straight to Reece"s Rainbow and are Tax deductable.

I thank each and everyone of you for helping a child, there could be no better gift we could give her for Christmas. The Hope of a happy ending....

31 for 21 : First Horse ride

2010-10-24T21:50:00.001+05:30

Today Saira went for her first horse ride, it was meant to be hippo therapy but I just saw it as a slow walk which she actually enjoyed.

Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Why the horse? Well the horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking.

So if this therapy helps in any way why not? Its far less difficult to implement, just put her on the horse and watch her enjoy. Far easier than seeing her screaming and wriggling and even pinching her poor therapist, who by the way is ever so gentle and kind with her. The girl has decided she isn't interested in PT and just you try and get her to do it!

Please excuse the quality of the pictures they were taken on my cell phone (naturally I forgot my camera for another first in Saira's life)

she looks a bit scared here, but she's actually not, it's more like her telling me to put down that camera and get over there and help her with her straps instead of leaving it to a total stranger.

there that's better

now off for my ride....

31 for 21 : Dancing little lady dance

2010-10-23T20:20:00.000+05:30

This is one of Saira new favourite dolls, she's like a rag doll, she's made of cloth and really floppy, can't keep her head up but Saira seems to love her. This video is of her trying to make her doll dance, till she gets fed up that the doll doesn't seem to be able to do it on her own, and just chucks her.....hmmmm I think we need to learn a little patience here!

31 for 21 : My Warrior Child

2010-10-21T16:20:00.002+05:30

Do you have $10 to spare? Or $ 20 or 30 or 40? Perhaps it would mean giving up that cup of coffee, or that one meal out or something else which we spend money on without thinking twice about! Thats all it really takes to get the ball rolling, like I have said before no amount is too small, it's not how much you can give but the fact that whatever little you feel you're in a position to give will make a world of difference to a child.

So what am I talking about here?

This sweet little girl is Taylah, she is my Christmas warrior child. Taylah was born in February 2008 and she has Down Syndrome. Taylah has been living in an orphanage in Eastern Europe just like so many other little children who have been abandoned by their parents simply because they were not born perfect in their eyes.

Most children born with Down Syndrome in EE will be abandoned at birth and then sent to an orphanage where if they are lucky they will find a family who will adopt them, those not so lucky ones by the time they are 4 or 5 years old are sent off to a mental institution where 85% of them don't survive the first year, they die never knowing what it's like to have the love of a mommy or daddy, what it feels like to be cuddled, loved and fussed over, they go to sleep alone at night and wake up alone in the morning.

Little Taylah could be one of these children who never gets to know the love of a family. She could be sent off to a mental institution by the time she is 5 where she probably won't survive the 1st year. Yes it's as harsh as that.

But we can do something to not let this happen

We can all do our tiny bit, we can all help so that she gets out of that orphanage and finds her forever family. There are enough families who want to adopt these children just not enough funds!

Reece's Rainbows Christmas Angel Tree Project is their biggest and most important fundraiser of the year. All of their orphans with Down syndrome from ages 0-5 are posted on one page for people to sponsor and donate for their adoption grants. It runs from November 1- December 31, 2010 and the goal is to raise $ 1000 or more for our designated child. Those who give more than $35 recieve a beautiful photo ornament of their sponsored child to hang on their Christmas trees.

Every penny we can raise brings a child that much closer to being home with their new family by next Christmas! With an average cost of $25,000 to rescue these precious children, we really can change the course of a child's life. These are REAL children who are languishing in foreign orphanages needlessly. All of us put together have the power to change that, even if you can't/don't adopt them yourself.

All donations are 100% tax deductable. You can contribute using the chip-in button on the upper right side of this blog where all donations will go directly to Reece's Rainbow or you could go directly to Reece's Rainbow yourself and donate.

So come on lets get together to make a difference.......

Thank you

31 for 21 : Wordless Wednesday

2010-10-20T16:25:00.000+05:30

She just can't resist a good book..........

All dressed up

2010-10-18T18:11:00.008+05:30

So it's that time of year again here, festive season, everyone is on holiday, the roads are lit up, there are millions of people on the streets (literally), you have to see it to believe it and as the night goes on the crowds tripple. This is the festival of Durga, one of the most popular Hindu festivals and the biggest festival for those who originate from Bengal, the eastern part of India. It celebrates the annual visit of the Mother Goddess Durga, destroyer of demons and all things evil. I had blogged about it here last year. Gosh how time flies!!

I have a few pictures of Saira all dressed up ready to go out. We did go out but not at the peak period we went early afternoon when if you look at the pictures below you will see it is still quite crowded but that's nothing compared to what it looked like a few hours later.

Saira seems to love dressing up and kept looking at her bangles and showing them to us. She would have the cutest grin on her face almost coy whenever I pointed the bangles out to her. I also have a frw pictures of what we saw when we went out, the decorations on the streets and the crowds!!!

The crowds starting to throng the streets and this is in the early afternoons, it gets worse as it get into the evening, and they will be out the entire night going from one marquee to the other (and there are hundreds) to look at the different idols. Some parts of the city are so crowded that it would take you about an hour to cover a distance of 6 kms.

here you can just about see the heads of the people

The Goddess

another idol of the Goddess at a different marquee

a close-up of the peacocks

here are 2 more idols, these are all made of clay and will be immersed in the river after the festival is over.

So the festival ended yesterday and although it's back to a normal working Monday today most people are still in their holiday mood and there doesn't seem to be much activiy about, I guess everyone is recuperating after spending 4 days and nights up and about on their feet.

31 for 21 : Day 11, 12,13 & 14 : I just might have to bow out.....

2010-10-14T15:01:00.000+05:30

I'm already more than a few days late for my day 11, 12, 13 and 14 but Saira has been sick, she hasn't slept in a few nights which means I haven't slept either and now I'm also coming down with something. So with all this going on I have had my hands full so I might just have to bow out of the 31 for 21 challenge but I will still try and post whenever I can.

Yes that's my girl, runny nose and yawning no end from no sleep.....

31 for 21 : Day 10 :Welcome to Holland and Amsterdam International

2010-10-10T18:55:00.000+05:30

This is the picture I have on the screen on my laptop, beautiful yellow Tulips, which got me thinking about the story "Welcome to Holland" it was one of first I read after Saira was born. I know most of you know it but since my blog posts are automatically linked to FB I thought this would be a great chance for those wonderful people who are interested in knowing more about DS and have been such great support to read it for the the first time. This is how it goes......

Welcome to Holland

by
Emily Perl Kingsley

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.

I also came across a blog called Uncommon Sense written by a mother to a child with DS and she published her own take on Welcome to Holland called "Amsterdam International" as she feels the original is lacking, in that it presents a nice little everything-will-be-fine look, with the windmills and tulips but it doesn't actually deal with a lot of the initial emotions many many parents do go through as they process that their child and life will always be different.

She wrote it with the hope that some parents might come across it as they are coming to terms with things and they might find comfort in knowing that their thoughts and feelings are normal and they are not alone.

leave you with a picture of my beautiful tulip

31 for 21 : Day 9 : I love to play

2010-10-09T15:47:00.001+05:30

with Spiderman and Batman and Mr. Incredible....so much more fun than stacking blocks!!!

31 for 21 : Day 8: Save Lera

2010-10-08T22:30:00.001+05:30

I am sure a lot of you remember little Lera. Her story is rather sad, it has been wrought with delays. Those who don't know her, Lera is an orphan, she has now found her forever family after losing two families. But she is still far from home. Her forever family still needs to raise ALOT of money to get her home, about $ 28.000,-. This little girl desperately needs to get home, she has been alone for far too long. I know some times we might feel what good is my little contribution going to do when they need so much, but if everyone would just donate a little, doesn't matter if it's $10, $50, $100 or $500, every little bit counts and adds up and this is how this little girl is going to get home. So I ask my friends and you ask yours and if everyone of us can give just a little we can change someones life, how often do we spend money on things without even thinking twice about it, so lets spend that little bit on a good cause. Lets come together and save a little girl from a life of loneliness, perhaps even a life of being in an institution where she will eventually fade away. Lets try and get this money to this girl within the month of October, in honor of Lera and of Down Syndrome Awareness month. Lets do it!

Thanks you!

31 for 21 : Day 7: Flashcards

2010-10-07T21:18:00.001+05:30

We work with flashcards with Saira everyday. Basically these are photographs I have taken of things in her immediate surrounding, I had them enlarged and then laminated so this way she can touch them, throw them around (which she does a lot) chew them if she likes and they don't get ruined so fast.

The photos serve as visual-mental cues for the spoken word, therefore it is important to take your own photographs and not generic photos. This activity is used to develop expressive language and the photographs should be of things in your child's life that represent the language you want him/her to use. If your child is just beginning to say words you would want to begin with those things that the child would tend to say first, like mama, papa, eat, sleep etc. Here are a few of the many many flashcards I have made.....these are photographs of photographs so please excuse the quality here

book

toy

sleep

swim

We repeat this exercise for about 2 minutes several times throughout the day. I continue to add new cards to her existing ones and even though Saira does not say the words, she does recognise the pictures and responds to the names when we speak about them.

31 for 21 : Day 6: The Jaw

2010-10-06T19:15:00.000+05:30

Oral Motor Therapy is a type of therapeutic intervention designed to facilitate the development of specific motor skills required for speech sound production, chewing and swallowing. These types of techniques assist in increasing oral muscle control, strength, tone and articulatory precision. These techniques in combination with each other help to ground the placement and manner of sounds and further improve the function of the swallowing mechanism. Today, oral motor therapy is widely used by speech-language pathologists and occupational therapists to treat various oral-muscular impairments.

The chewy tube and ARK's Grabber that Saira is using above are meant to strengthen her jaw they provide soothing stimulation that satisfies the need to chew while also improving jaw strength. These tools come in a set of four different tubes from Talk Tools and can be used in a hierarchy of increasing difficulty for development of jaw stability.

Abnormal jaw patterns interfere with eating drinking and speech. Controlled movement of the cheeks, lips and tongue is also adversely affected by these abnormal patterns. When these patterns are present meal times take longer. There will be poor control of items placed in the mouth with loss of food, fluids and saliva. Oral hygiene becomes more challenging to provide, often resulting in poor oral hygiene and resulting in gum problems, plague build up, tooth decay and loss of teeth.

So we see here how important jaw strength, something you and I take for granted and something that came naturally to us. Here again our kids have to work a lot harder to develop strength in this area.

31 for 21 : Day 5: I'm just another little girl

2010-10-05T21:16:00.003+05:30

who loves to snuggle with her doll at night......

o.k. this is a cheat post...I know I've posted this picture before but I had no time today!!

31 for 21 : Day 4: I'm just another little girl

2010-10-04T18:00:00.001+05:30

.......who loves to brush her lovely long locks....o.k. not long.

31 for 21 : Day 3: How delayed are our children

2010-10-03T19:08:00.000+05:30

"Children with Down Syndrome are individuals first. The conventional stereotypes are inaccurate and unhelpful. In physical appearance, they look like their parents and brothers and sisters, just like all other children. They do have some physical characteristics as a result of having Down syndrome but they do not all look alike and neither do the 'Down syndrome' features dominate their appearance. Similarly, children with Down syndrome vary widely in personality, from being extroverted, friendly and sociable to being introverted and shy. Some children are always calm, others are anxious. Some children are flexible and adaptable, others find change difficult and may have a tendency to be obsessional in their behaviours. Some children are easy to manage, are happy to be co-operative and to conform at home and in school, while other children are difficult to manage and like to have their own way, or to be in control, at home and at school.

Similarly, in all areas of development, children with Down syndrome vary in their progress. Some children will be fairly slow to achieve the motor milestones of reaching, sitting and walking and others will show little motor delay, and some children with Down syndrome will have more difficulty learning to talk than others."

Saira is 2 and she still cannot walk without support, but she cruises like a jet plane while holding on to things. So yes there are some obvious delays like this.

"Parents of typically developing children have some idea about expected development which they can use to decide whether their children are making appropriate progress or whether they should be worrying about their progress but for parents with children with DS although guidelines are equally important they are more difficult to find and interpret.

Speech and language skills are another obvious delay for our children and speech is more delayed than their non-verbal understanding. Most children with DS understand more language than they can use as a result of specific speech production difficulties. For this reason learning to sign will help a lot of children to communicate and to reduce their frustration. Hearing difficulties and low tone are common and also contribute to speech and language difficulties."

Saira is still pretty much speechless....but she has a whole language of her own which she uses to talk to her doll and to us all the time. But she still doesn't use many actual words. She says mama and papa and thats about the extent of her vocabulary.

"So while our kids do do some things later than the typically developing child it is important to mention here that children with DS will vary as widely in abilities, behaviour, personality characteristics, size and appearance as any group of 'typically developing' children. Their development is influenced by their biology and by their social and learning opportunities like all other children."

So in other words our children do learn to do everything providing no medical reasons prevent them from being able to but what we should appreciate is the fact that they do have to work very hard to achieve these goals, thus making no milestone too small to celebrate and constantly reminding us again just how amazing these children are.

One of the first videos of Saira cruising she wasn't quite so fast here as it was still early days but I still wanted to post it, more recent ones will follow soon......

31 for 21 : Day 2 In the beginning.....

2010-10-02T22:30:00.001+05:30

I know I've written about Saira's birth earlier, I even think it was for the 31 for 21 last year so I'll be brief for those who haven't read it before. Saira was born on 21st July 2008, I watched her being born and I saw her very briefly before they whisked her away, informing me that she was being put into the Special Care Unit (SCU) for observation as she was very tiny. I had absolutely no idea that she had Down Syndrome.

I was informed the next day that they needed to do a whole lot of tests on her, but I still had no idea why exactly they were doing them, nor did anyone else.

Forward to day three and we were ready to go home....still no idea that my little girl has DS!! But the night before the doctors had actually called my husband aside and told him. He chose not to tell me at that moment as it was late night, visiting hours were over and he had to leave, and he didn't want to spring this news on me and then leave me to digest it all by myself. I understand.

So as we got ready to leave the hospital I go to the Special care Unit to pick up my baby and they are getting her ready getting all her stuff together for us to take home. I haven't said this to anyone till today but there was this book lying open and I peeped into it, and my eyes fell right on the words, "eyes and ears indicative of Trisomy 21" and then it said some more stuff but by then I was no longer reading, my heart seemed to stop, I felt like I couldn't breath, I will never forget those words but then I said to myself that there were so many babies in the SCU and God knows whose book I had peeped into....who was I convincing, I knew deep in my heart something wasn't right. The way the doctors had been behaving the last 3 days, all the test they said they were doing on her, constantly asking me when my husband was coming, I knew something was going on but what?

After we got home my husband gave me the news that he had been holding in for the last 24 hours, I still remember his words when he told me our little Saira has Down Syndrome. Well the rest was just a blurr for a while, I thought I had been stabbed in my heart, and I went through all the many different emotions, of why me, whats going to happen, how will we manage, why our little sweet precious baby, all of that. I cried and I didn't want to talk to people when they called because I just didn't want to hear their sympathies and them telling me how everything was going to be o.k. just to make me feel better.

Down Syndrome.....it wasn't going to go away and I needed to live with this diagnoses, that's what I told myself and then somewhere down the road I don't know when it happened perhaps a few days after her birth everything changed, I changed or my little baby changed me. I looked at my Saira and I realised she is still the sweet baby I loved the moment she was born and just because I suddenly know she has DS what's changed for me? Nothing, she is still the same precious tiny little baby and I love her with all my life. I had no time for people feeling sorry for me and I had no time to feel sorry for myself either, Saira needed me and she needed me to be the very best mother I could be and those who wanted to walk down this road with me were more than welcome and those who didn't well we could do without. I knew I needed to educate myself about her and her needs and I needed to give her the best possible shot at life, and yes there was plenty to learn and still is as I continue to learn everyday. But right then what she needed was so simple, and so easy to give, all she needed was love. Plain and simple love. She was no different from any other baby, she just needed to feel the warmth of her mama's arms and loads of loving from those around.

So this journey that started off making me feel angry with life and scared and unsure turned around, I started to feel excited about the future, full of purpose and direction, I knew we had an adventure on our hands, I knew life would never be the same but I looked forward to the changes to the learning to the challenges that lay ahead. I cannot say whether everyone feels this way but I do know that whoever I speak with who has a child with DS does in some way go through many positive as well as negative emotions but I am yet to meet a person who doesn't eventually celebrate life for what it has given them. So when we celebrate together like we are this month of October it makes us come together, united for our children, to spread the word, to educate new parents or just the person next door, we want to be able to show the world everything our wonderful children can be and what life bringing up a child with special needs is actually like. But most of all we come together to advocate for Down Syndrome so that our children will one day live in a world of acceptance a world that will give them a chance to meet their full potential, so that our children can grow up to be adults treated with respect, understanding and dignity.

So lets continue to educate ourselves and those around us and hopefully the world will give our children their chance.

31 for 21 : Day 1

2010-10-01T22:53:00.006+05:30

I started this blog over a year ago, because I needed to write about my daughter and how she made me feel. I also thought this would be one place where I wouldn't have to explain myself, everyone would understand me and where I was coming from in regards to life with a child with DS. Blogging helped me in ways I cannot start to explain, it was better than any kind of therapy I could have wished for, it opened up a world I never knew existed. Not only did I find friends from across the world but it makes me realise everyday how blessed I am. When Saira was born I was confused and for a while there I wasn't in a very positive happy place only because I was scared and didn't know what to expect, I wish I had found this blogging world earlier. So to all you moms out there who are probably going through what I and so many of us did at the beginning of our journey please follow along and I hope that at the end of 31 days we will manage to make you feel a lot more positive about life. Believe me the ride is amazing and someday you are going to look back and say what I and so many others do, and that is to thank God for sending our children to us, for choosing us to be their mothers and fathers. They aren't called "special" for no reason!

31 for 21.....October is Down Syndrome Awareness month

2010-10-01T09:31:00.008+05:30

Grab This Button

It's that time of year again...October, yes it's Downs Syndrome Awareness month so that means the 31 for 21 Blog Challenge to Raise Awareness of Down Syndrome is here!

As part of the efforts to raise awareness about DS and all our wonderfully amazing children and adults with DS in our lives and their positive contribution to society I am joining many other Bloggers in attempting to post everyday during the month of October. I actually managed last year to blog everyday of October and I am going to try my very best again this year so lets see how I end up doing!

Do I have a possible problem on my hands??

2010-09-28T14:18:00.006+05:30

I'm not sure if I have an impending problem on my hands, but even at the slightest telling off, that includes making an exasperated face to myself, God forbid I even think of making one at her gets me the following results.....

So here she is crawling along, which she does beautifully now, and I'm watching proudly

when she suddenly decides to lick the floor, which is swept and wiped everyday but that still doesn't mean it's the cleanest thing to be licking

so I say "Saira no licking the floor" in my normal sweet voice I have for her and she looks at me and does it again,

so I put my hand on her mouth and say no licking, in my normal sweet voice, she listens but already not very happy with me

and licks it again, this time I point to the floor and her mouth and say no, once again in my normal sweet voice, I haven't even tried being stern yet, and well this is the result I get........

all because I said no to something

and sulk.......

so would you say I have a possible problem on my hands coming up????

A home for Leesia

2010-09-25T22:37:00.003+05:30

This is Leesia, she was born on 18th January 2008....isn't she absolutely adorable? Sweet Leesia is waiting for a family to commit to her. I keep going back to Reece's Rainbow and looking at her beautiful face and my heart melts a little more each time, I go back hoping that she has found her family. I know if I was in a position to adopt I would be there in a shot, but since I am not I pray that she finds a wonderful loving family who will take her home and love her for what she truely is. If you are looking for a little girl ,Leesia looks like the one.....her smile will no doubt light up your life.

Eyes....the window to the soul

2010-09-24T22:30:00.002+05:30

Saira just had her 6 month eye check-up and funnily I was expecting to hear that her eyes had improved, don't ask me why but I just did, so when her doc said that the power has gone up I was more than a little shocked. Her power according to him is -10 right now, that's kind of semi-blind I would say. She has to wear her glasses constantly now and I can just pray and hope that the power doesn't get any worse. Her eyes may not be in the best shape but they seem to speak a hundred words, they certainly can't keep me from seeing what lies behind, from seeing the soul within, the purest of pure, I guess that's why they say that the eyes are the window to the soul.

A little about Trisomy 21 and it's effects on the eye....

"Trisomy 21 has effects on the developing eye, which could impact the proper development of vision. Eye disease is reported in over half of patients with Down Syndrome, from less severe problems such as tear duct abnormalities to vision threatening diagnoses, such as early age cataracts. Particular attention should be given to vision in people with Down syndrome.

It is recommended that a child with Down syndrome has their first eye exam by an ophthalmologist experienced in patients with special disabilities (for example, a pediatric ophthalmologist) by six months of age. After that, children with Down syndrome, even if they are without symptoms, should see an ophthalmologist every one to two years. If any eye problems are detected, they will be followed more frequently.

Children with Down Syndrome often do not complain about their eye problems, either because they don’t notice the problem or because they can’t communicate the problem well enough. Signs to look for include squinting or closing one eye shut, an unusual head tilt, crossing or wandering of one or both eyes, or light sensitivity. In some severe cases, the sign of vision problems may be a regression in overall function or loss of developmental milestones.

Getting regular eye exams is very important in children with Down Syndrome because eye disorders are so common and are difficult for the pediatrician to diagnose. Because the examination can be difficult for both the child and the doctor, it is best to have the examination done by an ophthalmologist skilled in dealing with children with developmental delays. Don’t be surprised to find out your child needs glasses; if needed, the glasses will help the vision, and possibly the eye alignment, as well as to help in the development of normal vision pathways in the brain. This will help with your child’s learning and functioning."

Pray for Lois

2010-09-22T13:30:00.001+05:30

I am sure so many of you must have been following Lois's blog and since there has been no update for a really long time I have been wondering what her news was. Today Beth form Hannah's Shenanigans posted some sad news that

"just a few weeks out of chemo, little Lois has relapsed. She will need heavy chemo to get into remission, and then a bone marrow transplant, provided that there is a match. She needs us all to pray for her."

Now more than ever Lois needs our prayers and I am confident with all us coming together in prayer from all across the world Lois is going to beat this dreadful evil called cancer. Getting news like this seems to suck all the life out of me, I just wonder when and if this will ever end, when will our little babies be spared this, when will they be allowed to be children to enjoy their childhood. Lets all pray like never before that sweet Lois fights this like the true warrior she already is.

Mouse in my house

2010-09-21T15:58:00.000+05:30

There's a mouse in the house gnawing on my furniture

oops looks like we've caught our mouse in the act!!!
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2010-09-18T20:50:00.000+05:30

So she can show us a thing or two when it comes to yoga, but the reason she can do this is unfortunately because of her low muscle tone and ligamentous laxity, this makes it unusually easy for her to move her limbs into what we would consider totally bizarre postures (if we were to try to do them) but in reality the low muscle tone and loose ligaments at the joints are actually real challenges to early motor development which could mean delayed gross motor skills (eg. sitting, crawling, standing, walking), fine motor skills (use of hands to manipulate small and delicate thing for eg. the pincer grips) muscle weakness (for eg. in the cheeks, tongue and lips making feeding difficult for some children with DS) and/or coordination problems.

When Saira was born she was diagnosed with sever hypotonia, today her tone is still relatively low but considering where she is coming from there is a day and night difference. I remember at our last visit to her child specialist just recently how happy his remarks made me, he was just gushing at her progress and kept saying how thrilled he was to see her the way she was, and he did seem genuinely thrilled, he also said something which is so true, which was that most people wouldn't understand our excitement and be able to see just how much Saira has achieved, because there really is no big deal in a child who is cruising along furniture, and who sits up straight and steady or for that matter crawls on her hands and knees, for God's sake she's 2 shouldn't she be doing that anyway? But these people don't realise the road Saira has come down and what she was as a 6 month old, she was a floppy little child who found it so hard to do the very basic things babies do like roll over, hold her head up unsupported, sit unsupported, crawl even if it was on her tummy etc. due to her extreme hypotonia but today she is full of life, she is energetic and inquisitive, a little girl who love to explore everywhere, she won't take no for an answer and she has a mind and opinion of her own, she gets where she wants no matter how and which way but it's not been an easy road, she's had to work hard to get where she is and she still has a long road ahead, that's why every little thing she does fills my heart with more love and joy, every time I look at her zipping across the room with that sense of determination I feel so very very proud of this little girl, I enjoy every single milestone and accomplishment with such great delight and cheer and clap over things that most parents take for granted.

Tuesday Me Time....o.k. I did try

2010-09-08T16:26:00.003+05:30

Like Stephanie over at Our Daily Smiles just wrote, it's hard to believe that the week is over this fast and I thought I still had some time left to think about my me time. Yesterday I realised it was Tuesday and I has actually decided to start my fitness routine from Tuesday, I didn't manage to go to the gym as planned but I did go for a one hour walk, not bad don't you think? And today I have to drop Vir off to a birthday party and I am actually going to go for a coffee with a friend while he's at the party, hows that for two days of me time in a row!! Not bad for the 1st week, lets see how the week continues... actually the coffee falls into next weeks me-time but since I'm a day late with my post I thought I would mention it!

Before I leave here's a picture of my princess.....

Tuesday Me Time....will be coming up

2010-08-31T21:03:00.003+05:30

So Stephanie at OurDaily Smiles has inspired us all to take a look into our lives and actually take a note of how much "me-time" we moms take out for ourselves and frankly as I looked at my own life I realised yet again I haven't done any of the things that I have promised myself I would over and over again. So here I am consciously looking at my life yet again and I've decided that I will try my hand at some me-time!

Tuesday is pretty much over for me at this end of the world and the day went off quite well and I'm thankful for that (see Stephanie thats another think you made me think about!!) but did I manage any me-time? I guess not but I still have an hour left, you see the kids are asleep and my dear husband is not in town so I have all this me time right now, I don't have to be doing anything right now, and that's probably what I'm going to do. That counts for me-time doesn't it? Listen to some music and drown in my thoughts? But I promise more exciting me-time will be posted here in the very near future......

DS Meeting

2010-08-29T23:05:00.006+05:30

A few of us DS moms met up this afternoon, I wish there had been more but a few couldn't make it, even so it was a great afternoon, with so much cuteness packed into one room how could it not be. I won't ramble on too much about it, I think the pictures speak for themselves.

What we managed to do was update each other on our respective therapies/programs we are working on with our children, it's always good to hear what others are doing and if we are all headed in the right direction. Since therapy is totally private and there's no one place, like a DS Association we can go to, parents have to literally find out for themselves what their child needs. So I feel it's essential to be able to share this information with others. I know I've pretty much had to to find out everything on my own, just like so many of the other parents about the different kinds of therapies our children need and where it's available and good luck if you even find it. The internet has been a God sent for me, I don't know where I'd be, groveling in the dark, trying to make sense of things. Some of the therapies Saira needs are not even available and that's when I've had to take help through experts in their fields either abroad or in different cities and in turn have had to implement the therapy on my own. The first step is getting the knowledge and I've realised that you can never educate yourself enough when it comes to our kids, to be honest somethings just go over my head, and it's like I have to de-code things and get them to make sense to me before I can proceed...so the learning process continues and will probably do so throughout my life.

So coming back to our meeting, I have been trying to build up this group knowing very well how much it can help all of us but it has not been easy, we've had parents who have refused to join the support group, claiming they don't need it, that things are fine with their kids, or that their husbands don't want them to (!!). I mean it's so frustrating when we hear these things, but I know our society has so many layers and faces. I realise not everyone is going to be receptive to a group that so proudly wears the DS badge on their arms, a group that is excited and proud of their babies. I can understand that exhibiting their child (perhaps that's how they look at it) is not what they want to do, I even know a case where the parents hadn't told anyone that their child has DS not even the grandparents, don't ask me why, perhaps hoping that the DS might just go away. Anyway it's a struggle but at the same time we have some wonderful families who are pushing their kids ahead, opening schools, working with therapists, and generally doing everything in their power to give the best to their child and that's the group we try and get together with, like we did on World DS Day this year, and I hope this group continues to grow, one set of parents at a time.

I'm ready for the party...

not sure if I like my dress, it is a bit long

what's happening with all these kids around me

whats with him?

let me get a closer look

actually he's quite funny

what's she chewing on, her sock? I wonder if it tastes good

from that smell, I doubt it!

wonder why they are all after it

o.k now I'm bored...time for them to go home

so I can carry on watching t.v. in peace

Wordless Wednesday

2010-08-25T12:17:00.003+05:30

In Dreamland

Straw # 1 of the Straw Hierarchy

2010-08-16T21:50:00.000+05:30

As some of you might remember I have started working on the straw therapy with Saira. We had to start with the honey bear just so that she learns how to drink from a straw. This fortunately went pretty fast and she still drinks from it, but we have now started Saira on Straw # 1 of the Straw Hierarchy which looks like this

This is how the therapy works from here...

After determining the length of the straw your child needs in his/her mouth to drink, cut the straw length accordingly and let the child drink from this straw for no less than a week until success is reached.

Criteria for success involves:

No liquid leakage or air leakage between the lips

The jaw should be relatively still/stable, indicating jaw-tongue dissociation (a pronounced up/down or forward/backward movement of the jaw will be noted if the child continues to use a suckle pattern)

The lips should be slightly protruded (Lip retraction is noted when the muscle fatigues or secondary to a lack of lip-jaw dissociation).

The child should be able to drink 2 ounces of liquid in 2 minutes or less.

Do not transition from one straw to the next in less than one week

So after one week of Saira drinking on this straw we cut the length of the straw by 1/4th inch and now she is practicing drinking from this new length, we will continue to cut the straw by 1/4" increments until the entire tip is only 1/4" long. (This may be 1 cut or several cuts depending on the initial length of the straw). The tongue may still be protruding at this point with some children but allow atleast one week of practice after each cut.

I must say she is doing pretty well with the drinking, there is minimum spillage from her mouth and she has absolutley no problems with pulling up the liquid. When the entire process with straw # 1 gets easy we will progress to Straw # 2.

More on that straw # 2 when we get there.

Siblings

2010-07-30T18:00:00.000+05:30

I think at some point we have all given some thought to the kind of relationship siblings can have with their brother/sister with Down Syndrome. So if your are a mother expecting a child with DS or just given birth to a child with DS and have been thinking the same thoughts that I did and still do sometimes, I can say that not only do I have living proof but I have also seen in this DS blogging community just how wonderful sibling realtionships can be. Sure children have questions and it's best to answer them the best way you feel they would understand. Why does their brother/sister still not walk at a certain age, not speak, why do they need to go for so many therapies and doctors appointments, and whats with all this exercise they do at home? These are questions that will come up at some point.

I have spoken to my son Vir and he knows that Saira happens to have something called DS, perhaps he still doesn't understand what that will mean in the long run, but he does know that because she has DS she is taking longer to do stuff, for example Saira still can't walk unassisted and she still doesn't talk and she needs our help alot, he sees that she has to be taught alot of things that other kids do naturally. I have told Vir that there are many other children who have DS just like Saira and sometimes they might look a little similar, but they are all different from each other. I'm not so sure if he understands yet that his sister will always be just a little different from the 'typically developing' child and that it's not just right now when she's so small but what I do know is that no matter what he adores his sister just the way she is.

Talking about Down Syndrome to a child of 7 is not always easy, explaining about cells and chromosomes and how children with DS have more doesn't exactly make sense to them. I had written a post perhaps over a year ago asking what others did with their older kids and I got some very useful ideas about how to explain things. I remember this story about the cake, how children are like cakes, for eg. they are made with so much flour, so much butter and say 3 eggs all the usual stuff, now children with DS are made up of the same amount of flour and butter but instead of the 3 eggs they have 4 eggs in them, the cake ends up looking a little different but it still tastes just as delicious and everyone enjoys eating it as much as the other cake. O.k. so this is just a basic explanation, but it was an easy way to start. In the meantime I have explained a little more to him about what DS means and what it will signify for us in relation to Saira. I now realise that I don't have to constantly explain things to Vir anymore, he sees and loves his sister as his sister and the DS does not become the bigger thing, he know its not so easy for her to do all the things he did just automatically but that doesn't take away from his love for her. He sees how Saira adores him, and how her eyes light up the moment he walks into the house after school, how she is so very interested in everything he is doing and when he gets back from school they have this reunion which consists of many many hugs and kisses, like they haven't seen each other in days. He also fights with her and complains to me about how she's beating him up (considering she not even half his size!!!) but this is great because isn't this what all siblings do, play, fight, laugh, complain the whole lot....and here I was worried at one point if they would ever have the chance to share these very things? Ask him if he would exchange her for another brother or sister and he shouts back "NO WAY! I want my Saira" Well there I have my answer.

So to all those parents who have also worried along with me, it's normal, I know I did my share of it and sometimes I still think about the future and I know there will be challenges for all of us but we'll deal with them when they come, for now I look at the two of them together and I read about all the wonderful sibling relationships here in Blogland and it only confirms to me that we really don't have anything to worry about, the relationships our children share are very special, it is what will make our non DS children into mature, loving, sensitive, kind human beings and one day adults we will be very proud of.

Some photos taken over the last 2 years.....

Greeting him back from school

o.k. that looks like fun...let me have a go

o.k. then I need to pull a little harder

well if I can't have it I've just got to pull off his lip off

having a good laugh together

oh he's got more interesting stuff

o.k. so lets have a closer look

some lovin time

She drinks from a a straw!!!

2010-07-25T18:07:00.007+05:30

O.k. so we know that straw drinking can be a challenging task for our kiddos, infact for all kids with muscle-based feeding and/or speech disorders. So I got Saira the honey bear and we practised last week for 2 days and on the 3rd day I have a child who is drinking beautifully from a straw. I couldn't believe how fast she learnt, she is sucking up that liquid like she's being doing it all her life, she finishes the entire bottle! So now we are getting reading to start Sara Rosenfeld-Johnson's straw therapy.

Therapeutic straw drinking is an effective technique for achieving tongue retraction and inhibiting tongue thrust. It addresses eight levels of tongue grading with eight different kinds of straws and as you progress through the hierarchy each straw addresses a new location on the tongue as well as previous locations.

I realise we have to go through the program slowly as muscle skills need time to develop, but I am excited and am looking forward to any small/big changes in Saira's feeding and speech development.

The child is not meant to hold the bottle by him/herself as it's effectiveness as a therapy tool is based upon its position in the childs mouth, but I let Saira hold the bottle herself only so that I could take this pictures!

Mama I need you

2010-07-23T20:52:00.005+05:30

I was just looking over my medical file and happened to notice this ultrasound scan of when I was pregnant with Saira, I think the very last one I had. I hadn't really noticed this before but if you look really hard you will be able to see a tiny little outstretched hand, it's Saira's, and it's almost like she wants me to hold it, if you look even closer you'll be able to read the words

MAMA I NEED U and

LUV U

At the time I had no idea that Saira had DS, nor did my doctor or the sonologist who took this scan and who happened to have written these words on it but in her own way my little girl was already telling me just how much she needs me.

Well my little sweet angel I'm here for you, now and forever, you have nothing to worry about, just give me your hand and I will always be close, waiting to hold it.

Happy Birthday Saira

2010-07-21T22:03:00.001+05:30

My dearest Saira, today is your birthday and you are 2! That's a big girl. I can't believe I'm now going to say you're 2 when people ask me how old you are now, I know we're going to get some questions about your size and why you still can't do many of the things a typical 2 year old does but I think of this as a great opportunity to educate alot of people. I want people to know just how "normal" our life is and even though everything has it's own pace around here, that's o.k. with us, we just consider ourselves ever so lucky that we get to see that beautiful smile each day and yes your smile is to die for. When you wake up in the morning and the first thing you do is grin at me, any sadness or worries I might have are wiped away in an instant. When you shower us with kisses and you try to express yourself, try to walk, try to do something new you amaze us. You amaze us with your strength and your persistance, I know I put you through more than what most other children your age have to go through, while they are out playing you are working hard at your motor skills and I hate it that you have to work so much harder just to do what everyone takes for granted and considers to come naturally for them, I hope that one day you understand that everything we make you go through is just because we love you so very much.

How can I ever shout at you or tell you off for something, God knows I need to at times, but how? You just look at me with those big eyes, sometimes you curl your lip and at other times you just smile, and well anything naughtly you might have done is gone. You seem to be getting more and more restless each day and I can feel your frustrations, you want to walk and run and explore like any 2 year old but it's not easy and I understand, patience my sweet, soon, soon you will be running around and I know what chaos you will cause but I can't wait, I can't wait for that chaos, or wait for you to drive us crazy running after you. I can't wait for you to be able to do all the things you will be doing soon, and I can't even explain to you what fun you're going to have doing it all. You have so much to look forward. You are special and I must be pretty special myself to have been chosen to look after you and I will do everything in my power to make sure you have the kind of life you so deserve, I will do my very best to be a mother worthy of this responsibility.

So here are a few, ok alot, of pictures from today, we didn't really have a party, just the family and those who love Saira. She loved opening her presents (maybe it was the bright wrapping paper) she got loads of books and boy does she love her books, we cut a cake (sorry Saira but it's identical to Vir's birthday cake) but it's chocolate and that's what matters. We plan to have a birthday party for both the kids (eventually) so they'll get their special cakes then. I think Saira was quite excited with all the attention she was getting and somehow deep inside I hope she realised that it was her day!

The face I saw 1st thing this morning

Saira's cousin Raoul reading to her

Cutting the cake

My "special" doll

2010-07-10T14:00:00.004+05:30

It has one arm and one leg, well right now it has no arms and two legs, not sure what she's going to look like tomorrow, but she's Saira's baby and Saira wouldn't exchange her for any other prettier more abled little thing. Reminds me of myself and so many of us, ask us to exchange our little designer chromosome babies for a "perfect" child and I doubt if there will be any takers. So in the same way this little thing has a very special place in Saira's heart and as I watch her showering her with love, shouting at her, patting her to sleep, covering her with kisses, it makes me smile with pride.

What made me think that my daughter wouldn't know how to play with a doll, or that she wouldn't be interested in dolls, she is a little girl and like all little girls, playing mommy comes kind of instinctively to her. Try and take her baby away from her and well, god help you, firstly you have to fight her to get to it, and man is she strong when it comes to holding on to that doll and secondly there are alot of angry words you'll have to hear from her if by any luck you manage to get that thing out of her hands. So in the end it's easier to let her drag her baby along everywhere, it's quite filthy in the meantime and she doesn't like clothes on her, and you can't get her away from the doll long enough to wash it. But as long as Saira is happy we don't really care what her baby looks like, and I dare not buy her a new one because I doubt if it will stand a chance competing with such a special sister.

Just for the record I have given her other dolls but she just isn't interested!

Enjoy the many moods of mother and daughter.....warning there's an overload of pictures

this is while she still had one arm and two legs, the one leg has actually been put back on, she doesn't wear clothes either, now we just keep her that way

right now she doesn't have any arms but atleast her legs are still there

funny conversations with her baby(and she actually laughs while doing this)

telling baby off (she actually raises her voice during these serious coversations!!)

putting baby to sleep on her shoulder

kisses

introducing baby to teddy

and finally at night....look who goes to bed with her

Kind of Wordless Wednesday

2010-07-07T22:24:00.003+05:30

This needs a few words of explanation otherwise everyone's going to wonder what that thing behind the net is, well it's Saira, and she loves squishing her face against the netting on her play pen until someone notices, sometimes she has it so hard up against it, it's even hard for me to recognise her

and she thinks she's being so very very funny when she does that, always comes back up with the biggest grin!

Birthday Boy!!

2010-06-30T22:00:00.000+05:30

I had this post planned for yesterday but it was a roller coaster of a day and I wasn't home from the hospital till 10 at night and after that had zero energy to go online, upload photos and use my brain cells.

So yesterday was Vir's 8th birthday, gosh makes me wonder where the years have gone and how fast, also reminds me how old I must be getting. My little boy is not so little anymore, although at times I still wonder!!

Have been really working on getting that out of his mouth for atleast the last 5 years...and still trying!

He woke up earlier than normal, probably in anticipation of his presents, normally I have to drag him out of bed at 6 a.m. Infact the night before he kept asking if he could just have his presents at night as he couldn't bear to go to sleep and wait all those hours till he got them, I made him understand that the earlier he went to sleep the faster morning would come.

He loved all his presents, especially his very own guitar, he's been wanting to learn for a while so now he's going to get lessons, wow I'm going to love having a musician at home. My husband used to play but he stopped years ago and I played the piano growing up, also stopped years ago and Saira just loves music so it's going to be wonderful to have our son performing for us.

well he's definitely happy with his loot

a big thank you kiss

After he got home from school we cut a small cake, since he's not having his party for a while we thought we must atleast have a cake today and few of his friends came over, after which he went off for a golf game with his Dad. His request fro dinner was pizzas.

Saira exhausted after all the partying!!

I am so thankful for my sweet little boy, he's caring, sensitive and actually a real big softy inside. He's also so very shy, and sometimes I wish he wouldn't be so shy, it's probably what lets him down at times. There are times when we are at a toy store and I have to actually ask him if there's anything he likes there because I actually want him to choose something for himself, never does he demand things when we are out and when he does ask I can't say no because it's just so rare. My heart melts when I look at him. The other night when I was tucking him into bed he asks me why Saira has DS, I explained to him that there really wasn't a reason why she has DS, but that every child is different and special in their own way and that we are lucky to have Saira in our life, after that he asks me if he may kiss my hand and then turns around and goes to sleep, how sweet is that? I guess he's still not so sure about this Down Syndrome stuff and actually just wanted to know that everything is going to be alright.

We never got to do pizzas for dinner as I didn't get back till really late from the hosby which time he was in bed fast asleep, I think we might do pizzas tonight.

It's been over 2 weeks since my mums surgery, and she's getting stronger, but it's very slow. her lungs had collapsed partially during the 13 hr surgery and thereafter when she was intubated for 2 days. Her lungs are still partially collapsed and she needs to do alot of therapy to help expand them again. She had fluid removed thrice, once 750 ml, then 500 ml and 200 ml. Exercise is now the key to her getting better and I know the exercises aren't fun to do, but she has to do them and she wasn't doing them as often enough as she should I feel. Yesterday was a not such good day, she was very out of breath but then there are going to be better days and some not so good, I think she needed some oxygen at night. Her sats are actually good in the mid 90s and her ECG was totally normal, but the x-ray and ultrasound of the lungs showed slight fluid still in the lungs, but not enough to have removed, she just needs to exercise! We are hoping she can come home soon. Everyday I think about how grateful I am that the surgery went well and how thankful I am that she is here with us, those initial days were hard especially not knowing what each day was going to bring with it, seeing her the way she was, almost unimaginable for me to see her laying there so helpless and so vulnerable. But I believe everyday it a step closer to better health, as hard as it is for her, I know she has to be determined and strong willed (which she normally is) to get back to her former, active self. Time is crucial and she needs it so as I keep saying to her take it one day at a time, keep it slow but steady, and in a few months you'll look back at this awful experience and know it's something of the past. I know I certainly can't wait for that.

"Ahh this chair is just right" said Goldilocks and Reece's Rainbows celebrates their 4th Anniversay

2010-06-19T13:44:00.009+05:30

This happens to be Vir's old chair but Saira loves sitting on it, can't figure out why, it's made of wood so it's quite hard but I guess it's so small that she feels like she has something that's fits her just right. I think she also feels kind of important when sitting in it all by herself!

If you're wondering why she doesn't have her glasses on, it's not because her eyes are o.k. but because this young lady won't have anything on her face or her hair, we are having a tough time keeping her hair out of her eyes and her glasses are always chucked violently on the floor, we are on our 4th pair....

Saira is now officially cruising, not too fast as yet but she can get there, I can hardly believe it, she's come such a long way. I remember just the other day she's wouldn't even try and lift her legs, it was almost as if she has these two legs and didn't have a clue what to do with them, today I see her moving them so beautifully, very slow but steady, getting from A to B. She still will not try and stand without support and thinks it's a game when I make her stand and then slowly try and remove my hands from hers, she holds onto me for dear life or just plonks herself down on the floor. But we'll keep trying! Perhaps by her 2nd birthday. I shall try and get that on video one of these days.

News on my mom is positive, four days after her surgery we saw her walking yesterday, slowly and assisted but walking nevertheless. Tomorrow we expect her to be taken out of ICU and put into her room. The doctors were also pretty amazed with her determination and good recovery. What was supposed to be a AVR procedure ended up being a Bentall procedure which means it's an operation involving composite graft replacement of the aortic valve, aortic root and ascending aorta, with re-implantation of the coronary arteries into the graft. Well despite everything she has been through I can say she is healing well.

On another important note Reece's Rainbow is celebrating their 4th Anniversay. Have a look at this amazing video below, it's intense and oh so very powerful, you're not going to have dry eyes left after this. It's just so fantastic what Andrea has been able to accomplish and I am in awe. I know adoption is not possible for everyone but prayers are always possible and consider donating however small or big, every bit helps. These beautiful children only want to be loved, you can see it in their vulnerable faces, lets pray that as many of them as possible find their forever homes, just the thought of them being alone without the love of a family is unbearable. Lets all do our little bit to help

Video Montage for Reece's Rainbow for their 4th Anniversay.

Longest 13 hours of my life...but GOD is GREAT

2010-06-15T09:33:00.006+05:30

Got to the hospital around 7 a.m. and my mom was wheeled into the OT about 8 a.m. after that we heard very little except that the operation would take about 7 hours. The next hours were extremely nerve wrecking and stressful especially when one doesn't hear any updates nor if things are going as planned. Around 4 p.m. and 8 hours later we all strated to feel a little uneasy and were told at that point that the operation would carry on till at least 8.30 - 9.00 p.m!! Naturally all kinds of thoughts and concerns came to our minds, that would make it 12 1/2 hours, what were they doing for so long. I know as lay people with as good as no medical knowledge and with you mother having a major heart surgey one can't help but go crazy with ones imagination and that's exactly what was happening to me, to my sister too and to many other there who were keeping a brave face on just to keep us calm I feel. About 7 p.m. I get a call on my cell (why mine I kept asking later) to say that a relative of Mrs. Ute Mitra should please come down to the 2nd floor to meet the doctor, thats it! Thats all they gave us, so at that point I was on the verge of collapsing. The next 10 minutes were the longest and the scariest of my life. I very truely thought that there was bad news. 10 minutes later my brother called to say that my mother is o.k. the heart is beating again and that the operation went well, only longer than expected as they had to do more than they expected, they were going to close her up now, which would take another couple of hours. God is great, Thank you Thank you Thank you thats all that came out of me, I knew the Lord would watch over her and I knew she would be fine, I feel almost guilty for doubting him now. But we are human after all and that was no way to call a family to give them information, I'm going to have to let them know that. She is in the Intensive Care Unit right now on the ventilator but should come off it slowly by tomorrow. I hope I can say that the worst is over.

Holiday pictures

2010-06-11T16:53:00.000+05:30

Just wanted to post a few pictures from the rest of our vacation. Stuff we did with the kids. The best part of being on holiday is this feeling of being totally relaxed, no where to be, nothing I have to get done (except perhaps to make sure Saira gets her meals as she never seems to ask for them!) just get up in the morning and decide what we'd like to do today. Anyway I'm ready for our next holiday except that it's not going to be for a while....

We went bowling with the kids, was Vir's 1st time (it's now become one of his 3 favorite sports!!)

Saira trying to pick up that ball....not much luck that's why she looks a little disappointed

We went and played some serious boys games, getting them away from all this was the hard part

but we managed to pull them away eventually. Here they are with one of their prizes that they won...aren't these two funny with their new noses (thats Vir with his cousinTaine)

after which we needed some lunch....yummy

No. Saira didn't eat that entire box of french fries, she did nibble on one, I think the box was far more interesting

While my sis and I ate our lunch the boys watched the ice skating below and Saira entertained us with her jokes

As we anticipated after watching all that ice skating, the boys wanted to go as well, no way were they going to just sit back and watch all those people having such fun....so we came back next day and gave our best shot at gracefully dancing on ice (it looked far easier to do when you're watching)

The three cousins

Vir's 1st time ice skating and he really enjoyed it, infact he got quite good by the end of it, venturing way into the middle of the rink

I on the other hand preferred to stay close to the wall (and yes I did fall but just the once)

needless to say it wasn't a very nice sight especially trying to get back up

We also did Saira's favorite thing....SWIMMING

not so happy to be taken out of the water....:(

I know the kids take up alot of our time but we even managed a few girls night outs with my sister and my cousin. Nothing like doing stuff away from the kids sometimes, don"t get me wrong my kids are my life but you know some adult time is also very appreciated once in a while. We have a friend who opened a restaurant in Dubai and so we had a wonderful meal there one night

o.k. must remember never to take pictures of myself after 3 glasses of champagne

and we even managed to get in a girls night with my cousin who also lives in Dubai.

And before I forget Saira also had a little fun of her very own. The DS support group in Dubai has organised a playgroup every Wednesday and so while we were there we also joined them. It was wonderful meeting some of the moms and Saira got to meet a few young friends too. So that was definitely an extra something special.

On a different note Saira seems to be improving, even if it's very slight. She's down for a nap right now and isn't stirring too much that means she's not too uncomfortable. The fever is gone but she's still coughing like mad. I hope she's on the road to recovery and that this cold doesn't linger on forever, which is normally what it does. I need to take her swimming again, especially since it was recommended by her PT, so hurry up and get well sweetheart.

My mom went into hospital this afternoon. They have started running tests, and over the next 2 days they will be preparing her for the surgery on Monday. We need to donate blood tomorrow morning and we have 6 donors which is what they need (this is ofcourse a precautionary thing just incase she requires any blood). Thanks everyone for the encouraging words, for the positive thoughts and for keeping her in your prayers for Monday I really need those prayers.

A sick child, and a surgery in the family

2010-06-08T10:00:00.000+05:30

O.k. before I continue Saira is not having surgery but we have been back home after our holiday now over a week and I have a sick little girl on my hands, and there I had been praising and showing off to everyone about how well Saira has been over the holiday, well that shows me not too brag about her health, I can brag about anything else but I should learn to just leave her health alone.

Last Wednesday the fever started and she had a high fever till Saturday, along with the fever she was totally congested, runny nose, runny eyes, no energy, which I don't blame her for not having. Saturday the fever was gone only to come back yesterday and her nose is now running like a tap, it's terrible seeing her this way, her nose is all red from the rubbing, she will barely allow us to go close to her face, won't let us brush her hair, so in all she's looking quite a mess, but it's fine with me, I guess she's feeling bad enough without us fiddling around with her anymore than necessary. I guess the cold is going to take it's own sweet time to go, yesterday I started her on homoeopathy, that usually helps just have to wait and watch now. We are also in for our 6 month check up, blood, thyroid, eyes, ears, so lots of exciting things still ahead for us, just need her to get well first. Will also be posting a little more about our holiday, and some of the things we did with the kids. Vir had a blast and was rather sad to leave his cousins and come back home. But they will be coming here soon, so he has something to look forward to as well.

O.k. these aren't the best pictures but I just couldn't get my girl to pose, and I didn't want to leave without any pictures either, so these will have to do till she's back to her usual self.

I have also been a little preoccupied as my mom is going in for a heart surgery this Friday, the surgery is on Monday, but she goes to the hospital on Friday and gets all kinds of tests done before. She is having a partial replacement of her aeorta with a probable valve replacement, they will take the call on the valve once they open her up and see the condition. I am really worried but I also know that with Gods grace all will be well. If you remember please keep her in your prayers that her surgery on Monday goes really well without any set-backs. She is 70, always been a very fit and active person and we need her to get back on her feet and back to her old life as soon as possible. Thanks everyone

I think I like what i see

2010-05-24T10:49:00.005+05:30

Discovering her reflection on things other than a mirror, that was fun for Miss Saira, looks like she's getting prepared for staring into shop windows later in life. She stared at herself for a while and then suddenly realised who she was seeing, then she got really excited, before I knew it she gave herself a kiss, so looks like she certainly liked what she saw. She does make me smile....

Still on vacation and making the most of it

2010-05-19T12:44:00.007+05:30

The best part about being on holiday is spending quality as well as quantity time with the people you want to be with, for me it's been great to have this time with the kids. Usually back at home we all get so busy, Vir is gone most of the day in school and when he gets back it's busy busy with homework, activities and then dinner and bed, before we know it another day is gone. The entire week seems to fly by this way and weekends are pretty much the same, sometimes I find that the weeks have gone by and I haven't even looked back and reflected on the things that made me happy during the week, even if it's just something funny Vir said or an especially long hug I got from him, or him coming and cuddling with me and wanting me to tuck him into bed, or a little story about himself he tells me, these are the things that make my life so very special. But we get so caught up our day that ever too often we don't stop to think about all these happy things and just how much they mean to us and what life would be like without them. These last couple of weeks have made me reflect more and more on how lucky I am and on everything I have around me that make up for this wonderful life I have...I just wish I would stop more often and enjoy the moment. Perhaps this holiday is allowing me to do that, and that's exactly what I needed. To look at my son and watch him smiling and actually stop and enjoy his laugh, enjoy the very moment the here and now, because we don't really know what tomorrow brings. I wish I could hold that moment but we all know that that's not possible, so we need to just take it in and be thankful that we have these moments to make memories out of to enjoy. It's truely the simple things that end up meaning the most to us, they are right in front of our eyes just waiting for us to grab them, all we have to do is stop for a minute and enjoy them. I think I can do that. Sometimes I feel with Saira's birth my sweet little boy has had to take a bit of a back seat, not that he has ever shown that he feels it, I guess it's my own guilt, it's always been Saira this, Saira that, Saira's needs seem to have taken precedence and naturally so under the circumstance....but my Vir has always had a smile on his face. I just know that being on holiday with him has given us this little extra time together which is special, even if we go about our day doing our usual stuff, it still gives us that special time to sit together and laugh, a few extra cuddles, a few extra chats. And I'm thankful for them.

Yesterday we went to a Rain Forest Cafe with the kids for dinner. It was fun, especially for the kids, Vir actually thought the animals were for real, at least in the beginning, especially when the tiger started roaring and the elephants starting moving, I think you can kind of see the fear in his face in one of the pictures, infact Saira looks a bit scared herself, but the only time Saira was really into it was when it started lightening and the thundering.

Feeling much better

2010-05-17T13:57:00.005+05:30

After the night before I was expecting yesterday to be another bad day, but surprisingly Saira's fever went down and she was acting more like her usual self than she had done the previous two days. She was perky and smiling and interacting with everyone alot more. I'm so glad things seem to be getting back to normal around here, she hasn't really developed a cold although there seems to be a cough trying to find it's way out, but when I stuck my finger into her mouth to feel her gums for any new teeth, her gums felt extremely bumpy all over, so it looks like not just one new tooth but many new teeth are on their way.

We took it easy never the less, but today we did a bit of P.T. (just a bit) and now I'm going to run a bath for her (she hasn't had one in 2 days) so it's definitiely time for one, besides she misses her bath, she just signed bath to me with a big toothy grin, so I know what this girl wants.

So more from us later, please just keep your fingers crossed that this 3 day sickness is over.....

2010-05-16T11:18:00.004+05:30

It's no fun being sick on vacation, not for Saira and not for me when Saira's sick. Saira's had fever for the last 3 days and right now I don't really know what's wrong. I give her her meds and the fever goes down and then after about 6 or 7 hours its back again. Last night was the worst, she probably went to sleep about 5.30 a.m. so that meant we were both up the whole night. She's still asleep right now, and I just hope today is better. Perhaps it's her teeth, or she's coming up with a cold....

Here's is my angel not looking her happiest, but we intend to make up for that as soon as she's back to her usual self.

2010-05-11T10:21:00.013+05:30

It's been a hectic beginning to our vacation and here I thought I would be sitting on the couch with my feet up and doing nothing .... but it's been a fun beginning, with sun, sand, walks in the park and Saira is having a ball (keep this girl out of the house and she's the happiest). So yesterday we were at the beach whole morning, and it was Saira's first time on sand, she was a bit apprehensive but was loving it as you can see ....

In the afternoon we went for a lovely long walk in the park. We even got a view of the famous Burj Khalifa, presently holding the record for being the highest building in the world. What is amazing is that here in the middle of a desert country they have the most lush green parks, full of beautiful trees, birds and small lakes. After a long walk and a playing in the grass it was back home for Saira, and I don't think she could complain for she certainly had a day full of activities.

Saira playing in the grass

if you look hard enough you can see the Burj Khalifa in the background

Also everyone please don't forget little Ella, and keep those prayers going full force for this little angel as she starts her batttle with Leukemia, lets all pray that this journey, which we all wish she didn't have to take goes by as smooth and easy as it possibly can, and also please pray for strength for her family who must be going through such an emotionally hard time right now.

Sweet Ella needs our prayers

2010-05-10T16:15:00.005+05:30

Those of you who haven't met sweet sweet Ella (although I can't imagine who hasn't met her here) please go over to her blog and meet this adorable, sweet, angelic little girl. Please please say a prayer for her and her family as Ella starts walking down the road that's every parents nightmare, the road every DS parents fears and prays misses them, Ella begins her battle with leukemia and I can't imagine what her family is going through right now, but this incredible global family we have here is joining hands in prayer as our latest warrior fights her way through this. Please get her button for your blog and pray pray pray for Ella to get through this as smoothly and painlessly as possible, so that we can see her brave smiling face getting up to trouble and doing all the things every child should be doing at 2 years old.

Vacation Time!!

2010-05-05T21:06:00.004+05:30

These last 12 days have been emotionally very hard, Carly's death hit me in a way I didn't know it would. I haven't ever had to deal with a parent losing a child so young and so suddenly, and I could so deeply feel their loss. My heart goes out to the George family and there hasn't been a day in the last 12 days that I haven't thought about Carly about Joany and the whole family, many times during the day and have said prayers that they are somehow able to find the strength to continue down this path. Carly will always be in theirs hearts and she is never far, her spirit is in everything beautiful around them. I continue to pray for the George family as I know do so many of us here in this big amazing club we have.

Just one more day and we go on vacation...a much needed one as far as I am concerned. I get to see my sister and my nephews after nearly a year, and I can't wait. But tomorrow is going to be crazy as I have 1001 things to still do, but who cares even if I collapse at the end of the day, at least I know I have a 3 week vacation to look forward to.

We are off on Friday to Dubai, Vir's summer vacations start on Friday, so we practically wait for him to get back from school, shower, change and rush off to the airport. Vacations for a lot of people are synonymous with travelling, being up and about, on the move from place to place, maybe a bit of touristy stuff thrown in, but for me right now all I want is to put my feet up, be at home, not have to, have to, do anything I don't feel like, just make sure the kids are having a good time and de-stressing.....visiting my sister is going to be all of the above. I'm also going to be able to blog a bit more (hopefully). Saira will be continuing with her therapy even there, sorry that doesn't go on vacation, but then we know why it's so important.

So hopefully you'll be hearing more from me over the next days, until then here are some pictures of Saira helping me pack, the date on the pictures are wrong, they were taken this evening.

2010-04-25T12:15:00.002+05:30

My hands are shaking right now, the blood just rushed through my body, I don't thing I am in a state to write very much, or be very clear about my thoughts right now. I just can't say how devastated I am, I came to love sweet little Carly so much, I feel like I have lost someone of my own. I just can't understand what happened and I feel so sick, I can't stop my tears. Why is life so cruel I can't figure this out. I am praying for her family but that's not much consolation right now. Oh sweet beautiful little Carly you are loved by so many all over the world, I can only pray that you are somewhere beautiful and you are at peace, you will always remain in our hearts, always, always......

S is for Summer & Swimming

2010-04-17T14:19:00.004+05:30

Every Saturday we go swimming, yes that's the only place one feels like being these days, either in the water or indoors where it's airconditioned, it's about 104 degrees outside and I guess there's not much energy going around to do anything productive. So Saturdays have become somewhat of a ritual for us, and Saira just loves her swim. So it's swim, eat lunch out by the pool and then fall asleep (talking about Saira). Unfortunately I couldn't take any of her actually in the water as I had to hold her but here are a few pictures of her sitting by the side of the pool and paddling her feet in the water. She is just loving being out there......

Easter pictures and toilet training

2010-04-06T23:30:00.000+05:30

I hope all of you had a very Happy Easter. Here are some pictures from our easter weekend. On Saturday we did some Easter egg painting, which started off really well, but we got over excited and broke a few eggs along the way, also went wild with the colours and designs and as I had promised myself that I wouldn't interfere (only I know how hard that is for me) if the painting wasn't as I had envisioned, I didn't, I let Vir do exactly what he wanted and we ended up having alot of fun.

hard at work....

Easter Sunday we hunted for eggs. I made little picture clues (I had all the eggs in one basket instead of single eggs hidden all over the place, thought this would go faster) and Vir had a fun time going from one clue to the other until he found his basket. He was a bit disappointed when he found the egss, and asked me "that's it no more clues", I think he enjoyed the hunt more than the actual end result. But he is enjoying eating his eggs now!
We had easter brunch with the family at my parents which was lovely. And well before we knew it Sunday was over...

with my sis-in-law Nikki

Vir's school started on Monday but on Sunday I still had 43 books to cover (yes the kids have to cover all their text and exercise books here) and let me tell you that that's just about the most boring job you can think of, anyway he had to have them all done before the first day of school, so I was up till midnight doing that. You can imagine how heavy his school bag was, but eventually I sent the books in 2 installments half on Monday and the rest went with him today otherwise he would never have been able to carry his bag. Vir's 1st day of school went well, he woke up on time and got ready on time without any fuss and was ready to leave by 6.40 a.m. I asked him to stand for a photograph but I must admit it isn't the best one I have of him, perhaps it was a little too early....anyway stiff as he looks (and this is one of the better ones) I still thought I must post one of him on his 1st day of grade 3.

O.k. now on to Saira's news, well I had been thinking of potty training her for a while, so we got her her first little potty, which she was not impressed with one bit the first time I sat her down on it but this morning we hit the jackpot, she was sitting on it 5 minutes and then I saw her face change, she was making this face and I knew she was pressing, I was pretty sure something was happening, and true to word .....success, mission accomplished!! She had a good laugh after, especially when she saw how excited I got, clapping away and making such a big deal about a little poop! But it was such a big deal for me and for my little girl too.

2010-04-01T16:00:00.003+05:30

"Life is not measured by the number of breaths we take, but by the moments that take our breath away."

pushing and pulling on her arms, she just loves this

ever so pleased with herself

Really I must applaud all of you who have been posting something on your blogs everyday or every other day and giving me my much expected and awaited dose of your darling little ones. I mean how do you do it? I just don't seem to be able to find the time anymore, don't ask me why, I probably wouldn't be able to answer that myself but I seem to be sucked into this awful routine and I hate routine but everytime I want to post something, whether something new or just to say hey we are still around I get sucked deeper into my routine, so o.k. I need to change my routine and blogging should definitely be part of it. I manage to steal just about enough time to read all my favourite blog posts,(some of which I read sneakily at work) and sometimes I find myself close to midnight catching up...

anyway I digress, here is a bit of an update

Saira has been doing really well (o.k. I bite my tongue, I'm superstitious this way) but really she has been well, and I think it might have been the milk that was making her so sick, her chest has never been so clear, she isn't wheezing, no congestion, no runny nose (o.k. now I really must bite my tongue). About 3 weeks ago she was still nursing her 3 month old cold, and then suddenly she got even sicker, throwing up, bad stomach, and it was then that I decided that's it, I'm going to try her without the lactose (I had read it somewhere, perhaps here on blogland) about how lactose intolerance could cause the same symptoms that Saira was suffering from, and voila, there you have it, slowly and surely I noticed how her chest cleared up and she no longer needed the nebuliser and she was looking and sounding so much better. O.k. so I have no proof, I haven't tested her yet but I'm still keeping her off all lactose products for now.

Physically, she is standing with support, still refuses to try without, she won't move her feet though so chance of cruising for a while. Today for the 1st time she actually managed to pull herself all the way up into standing, normally she managed to get into the kneeling position but when it came to standing her legs would get into a terrible mess, entangled and all over the place...but she got up all the way today, perhaps just a fluke but have to give credit where credit is due she did manage!! Once she's standing she pushes her body back and forth using her arms (which she is doing in the photo above), she find this hilarious. She still crawls on her belly pulling her body along the floor, refuses again to try on all fours, I guess she just isn't strong enough.

Speech is well....pretty much stuck on the same words, but she does understand a whole lot, her only way when replying to a question is a different kind of cough for different answers. She says mama, papa, dada, tata (for bye-bye) and a whole lot of other sounds that come out with different mouth contortions. We are expected to understand everything mind you.

I have decided to get into the NACD (National Association of Child Development) program with Saira, it's an U.S. based program but they have opened a chapter in India, I am excited about it, I know it's going to be alot of work but as I have seen and heard very result oriented. More on that once we get the ball rolling.

My mom turned 70 last weekend and we had a family dinner, which was fun but noisy as usual, which is the case in all our family gatherings when you come to think of it!

Birthday kiss from my brother

My son starts grade 3 on Monday, he's on a 2 week break right now and getting ants in his pants, I mean constant entertainment is hard, He got his report card and his class teacher had many nice things to say, which I found sweet. So back to school on Monday, I can't wait at least!!! I've got to take a picture of him in his new uniform and post it here.

So here's hoping for more regular updates from me....I guess with summer here,, everything seems to have become an effort its actually scorching right now with promises of getting worse! Until next time, here's wishing all of you a really really happy Easter.

03.21.2010 A Day to Celebrate

2010-03-23T16:00:00.002+05:30

Sunday 21st March, World Down Syndrome Day and my Saira turned 20 months old.

We celebrated it with so many amazing, beautiful children, their siblings, moms, dads and grandparents. It was an afternoon of fun and games, and interaction. Most of all I hope it will be the beginning of something which is desperately needed here and that is an official

"Down Syndrome Support Group" for all us parents.

Here are some pictures from the day.

2010-03-21T23:23:00.003+05:30

Happy World Down Syndrome Day everyone.

We had a great day, met beautiful children and beautiful young adults all with that extra designer chromosome. I am exhausted now and its nearly midnight, so photos and details to follow soon.

2010-03-01T18:37:00.004+05:30

Who needs toys when one has.......

toilet paper!!!

What is it about children, or is it just mine, give them a remote control, a cell phone, toilet paper, keys, pampers any day over a real toy. If it weren't for the educative value of some of the toys I am believed into buying I think I would be saving alot of money!!!

Father-Daughter moments

2010-02-25T09:00:00.001+05:30

This pictures don't really need many words...just that Saira and her dad definitely share a special bond, they have their own games going on, own conversations, he can make her scream with laughter....sometimes I really wonder who the bigger baby is here.

obviously a very funny conversation going on there!!

1st experience with grass

2010-02-21T15:41:00.007+05:30

Spring is definitely here and with it comes many firsts, the days grow longer and warmer, and the flowers start to bloom in full splendour. Though the spring season stays for a very short time here, it brings newness to the surrounding, the entire atmosphere becomes bouncy.

Before the summer heat hits us I thought I should make the most of being outdoors, so yesterday morning Saira and I went for a nice long walk, there was a lovely breeze, making sure we never got too hot, we soaked up the sun, enjoyed the birds chirping, looked at all the trees starting to bloom and even saw some squirrels, not sure if Saira actually noticed any of them, but it was obvious she was so enjoying just being outdoors. After our walk we spent some time sitting on the grass watching Vir at his golf lesson, it was also Saira's first feel of actual grass, can you believe it, although we have been for walks before and even sat on the grass, it was always on a mat and last year she was actually too small to have a reaction to it. After the first moment, where I noticed slight apprehension I suddenly saw that she got really excited, she even lay down on it rolled about a bit and did a belly crawl as if to check out this new thing which had a sensation like none she's felt before. When it was time to go guess who refused to get up, I had to pick her up kicking and put her back in her stroller, that is after brushing off grass from almost every place on her body including her mouth.

We had a wonderful morning, reminded me that the greatest of pleasures can lie in the simplest of things, things that are right in front of our eyes, we just have to reach out and grab the opportunity to make each day as special as possible.

2010-02-19T23:50:00.001+05:30

O.k. it's nearly midnight, but thats the only time I seem to be getting for myself these days, really don't know how the days are going. I know I'm long long overdue for an update but I seem to suddenly have become really bad with time management and I find the days slipping by, gosh February is nearly over and I've managed what, like one post??

Saira has us on our toes these days, she will not sit still for a minute and will not sit in any one place, she feels confined so that means her high chair, her play pen are a no no most of the time, she moves about dragging herself along the icy cold floor and she still has her cold (it's nearly a month now) and frankly I really don't know what to do about it anymore, no medication seems to make much of a difference, but then if she's always on that cold marble how do I expect it to improve, but I can't keep her tied up either, so I just have to live with it getting slightly better and then worse again and so it carries on. I am going to try homeopathy again, it has helped in the past, so keeping my fingers crossed that perhaps it will again.

On the physical front Saira has put on a little weight, she is up to 9.2 kgs that is approx. 20 lbs, not bad for a girl who refused to put on much weight in the first year of her life. She is crawling all over the place, (according to her Gross motor skills book that's when one drags ones body by their arms and pushes with ones legs, a belly crawl) she refuses to do it the traditional way, but I guess she's still not ready for that, I thought it would be much faster and somehow thought she should prefers to do it this way little realising she isn't ready for the on your knees and hands crawl as yet. She stands with support for a few seconds on her own but after that she flops back down on the ground. So a little progress, nothing major, but I congratulate myself for my patience, I remember there was a time when I found myself always in such a hurry for her to do stuff, impatiently waiting for her to reach the next milestone, even getting a little anxious, then all of a sudden I realised that it's o.k., I am at peace with the fact that she just needs longer to get to where other kids her age are at and instead of getting impatient for her to get there I know just how much more I'm going to enjoy it all when she does. I never appreciated it that much when my son sat up or crawled, or walked for that matter because these were things he was expected to do, but just look how different it is this time around.

standing with a little help...

She has some major tuskers on top, they are 2 huge bugs bunny teeth, where as her bottom 2 are tiny mice like teeth, 2 new teeth on top but right at the back are also sprouting right now, all a little mixed up, but who cares as long as they come...

top 2

bottom 2

I have started signing with her but haven't seen her sign back as yet, been trying to teach her water, more, bath, hi, all done, amongst some others, but she has her own way of expressing herself, for water she has a special cough, so the other day as I was asking her to sign water (after having signed water with her for quite a few weeks) she turns around and coughs back at me...well I guess she feels as long as I understand her why should she bother learning to say it any other way.

She also loves to play peek-a-boo...all you have to do is say the words

She and her brother seem to have a great understanding going on, the other day I found Vir sitting with her in her play pen and well they were having some kind of conversation and game going on, although to be honest I found him playing very seriously with her dolly, some kind of flying superhero kind of game, she was watching him intently....

Something new that she has started is come evening this happy little girl turns into a screaming monster, she will stay with no one but me, and then too I have to carry her around continously no putting her down somewhere, even if I am standing right next to her and doing something, so that means whatever work has to be done has to be finished by pretty much 6 p.m. because after that good luck trying to do something which doesn't include carrying her around. I need to put a stop to this, but I know the only way is by putting her down somewhere and letting her scream, don't know how long I can bear to hear her do that. Anyone else facing or ever faced an overly clingy child?

Well everything seems to be kinda under control my end...so no reason to neglect my blog, I shall start posting more often now even if it means staying up past my bedtime!!

URGENT... Lera needs a home

2010-02-04T11:30:00.001+05:30

This is really sad news but the family adopting little Lera will not be able to complete their adoption & bring Lera home. She is in urgent need of a family to step forward ready to commit to adopt her. She DOES NOT have much time. Let's help this beautiful little girl!

__________________________________________________________

Lera

Girl, Born August 7, 2005

Russia

I LOST MY FAMILY!!

Lera is a gorgeous little girl with blonde hair and blue eyes.She is 4 years old. She is quite high functioning, and doing very well. She has flat feet and a systolic heart murmur, but no major heart conditions. She is able to walk and climb, she eats by herself, dances, and understands and follows directions. She has also been transferred to the regular class, so she is living and learning with her typical peers.

Adoption requirements at www.reecesrainbow.org/waitingchild2.html
SINGLE MOMS ACCEPTED!
Upfront costs: $3000 agency fee + homestudy

For more information please contact Andrea (bamaroberts@comcast.net)

I have $8605 in my grant fund towards the cost of my adoption!

__________________________________________________________

This is a desperate situation. Lera will be placed in an institution, and will no longer be available for adoption, if a family doesn't commit to her in the next few days. Her adoption is partially funded already. If you or anyone you know might be interested in adopting Lera, please contact Andrea at Reece's Rainbow at the contact information above.

Prayers for one very special little boy

2010-02-01T13:27:00.013+05:30

What I realised soon after I started Saira's blog was the amazing support and the beautiful friendships one forms here, people without faces at times, voices which I don't hear, but voices all right, very strong voices that I can feel. These voices enter your home and these lives become intertwined with yours no matter how far away we might be, and these little angels and their families become an integral part of your life, your love for them grows and grows as each day passes making your life so much more beautiful. The part that is the hardest is the fact that as we walk down this road together we grow attached, and their journey sometimes feels like it's yours, their fear and pain I know can never be mine but I still feel it so greatly, but here I stand an observer, helpless as I can't do very much but pray and know that even after the darkest moments in life there is light.

For those who read my blog and don't know Jax as yet, do visit this beautiful boy, he is such an amazing, brave little soul, he has been a warrior much of his life and I loved him from the moment I set eyes on him. Right now he is fighting once again and I ask everyone to please please keep him in your prayers, as this little angel is really sick and needs us all to join hands and pray really really hard and ask for his healing, please pray that that warrior in him continues to fight as he has done so many times before and that he gets better really soon so he can be back home with his dear family where he belongs.