Do you remember us?

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

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

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

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

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.....

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!!!

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