Letters to Lior

Trsiomy 18

There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Friday, April 29, 2011

Woooooo Hoooooo

Happy Birthday mommies little munchkin. Loving you more and more each day

Tuesday, April 26, 2011

Count down .....

Hey little nunu - so peaceful and calm. You have had a glorius weekend, couldnt ask for better. No crying, no moaning, no nothing, but lots of love and laughter. All of a sudden this weekend you seem to have "come out of your shell" - you have babbled and shouted and laughed for no reason. When you found things too quiet you had your say, but it was all so wonderful - your little personality is shining through more so than ever. You also seem to be building a bit of your strength back, holding your head up high for longer periods and standing with mommy. Tan even had you "walking" down the passage - of which you loved every moment. And then again in your walking ring - what a strong little man you are !!

Ok so now its the count down 2 and a half days till your BIRTHDAY !!!! Whoo hoo !!!! cant wait, neither can daddy or the girls  although you probably havent a clue why we are all so excited, but you will soon find out.

Loving you lots

Wednesday, April 20, 2011

Happy times

Hey little sweet pea - the last few days have been really great. We have been able to manage the constipation compaction problem - what a mouthful - and you have been feeling so much better. Been heaving a little but not as much as the weekend. We have had four nights of bliss and you sleeping through but I guess now you have decided mom and dad have had enough sleep, lets shake things up a little :)  okay it hasnt been so bad, you have been a little on the niggly side but nothing major, I think just cause mommy wasnt feeling so great it felt worse than what it was.

In any event, you have been smiling so much more lately - and then when daddy gets hold of you, lots of giggles, some of them delayed reactions but nevertheless a wonderful sound.

From all the operations, you seem to have lost quite a bit of muscle tone but you are slowly building it up again. When you feel like it you try stand a little (with mommies help of course) and you hold your head up for a little longer each day - something you were able to do for quite a while before the operations.

You have also put on some weight, almost 600grams and now all of a sudden your 0-3 months outfits are looking a bit too snug - so now we have got you in the 3-6 months outfits which kind of seem a little bit too big - sigh ....... - you will grow into them ..... eventually :)

You were just too cute the other night - full of energy and trying to mimic mommies expressions. I was trying to make and O sound and showing you the shape of my mouth you tried so hard, eventually you went squint but managed to get the O shape going - just too gorgeous for words. Nevertheless your sisters thought you were absolutely histerical - such a little character you are.

So we are getting ready for your birthday party and have decided on a Mickey Mouse Pirate theme, -  a) Mickey Mouse because of your Mic-Key and b) Pirate because your one eye is smaller than your other - Kudos to Jacqueline, Mommy and Tia - YAY !!! Cant wait. We never thought we would see the day, but here we are and it is so wonderful and exciting, and going to be so memorable.

Missing you much littke munchkin

Friday, April 15, 2011

Ting - ting - ting -ting - and the lightbulb goes on

Hellooooo my little sweetie pie (yes I could just eat you up), slowly but surely your are getting back to your normal bubbly self, the only problem now is you seem to be nauseous all the time, not sure if it is because you may be feeling a little constipated, although your tummy is working it is sort of like a putty and as daddy would say, little ironies, so daddy is going to take you to the paed for a check up and see what is what.

So mommy is really thinking about aunty Taryn (litte Mik's mommy) , she is really not feeling well, she is very sick and feeling down. I read her blog today and I just wish I could be there to give her a great big hug and have a good cry with her and be able to comfort her and say I know how you feel, something I think we both need.

I know for people not in the same situation or as I would normally say, the same roller coaster ride as us, this may sound strange, but reading aunty Taryn's blog today has finally hit the nail on the head for me, let the bell ring (ting -ting), or the light shine or knocked some sence into me. We have both blamed ourselves for you and little Mikayla having T18, asked ourselves what we could have done to make you "healthy", we have both asked why God didnt answer our prayers, but in fact GOD DID ANSWER OUR PRAYERS . All through our pregnancies, we asked for healthy babies and although you and little Miks both have T18, you are still healthy. You are as healthy as can be for a Trisomy 18 baby. Although there are times that you stop breathing and have to be fed through  Mic-key and although you have a cleft palet and rocker bottom feet and a slight case of club foot, and although there may be neurological problems and although your hands arent completely open as a normal baby's would be, and besides the nasty post nasal drip and the constipation, you are generally very healthy - and isnt that what we asked for? Healthy doesnt mean NO DISSABILITIES - healthy means no sickness. You dont have a sickness, you have an extra chromosome.

As hard as it is, it makes me feel better to know that God did think of me and daddy and of you, and that he did give us what we asked for. I didnt ask for a "normal" baby, I didnt ask for a baby that does not have Trisomy 18, I asked for a HEALTHY baby and that is exactly what I got. So thank you heavenly father for listening to my prayers, thank you for keeping our precious little boy healthy.

So I will be keeping aunty Taryn and little Mikayla in my prayers, I will be praying for their health and for them to keep strong. I will continue to pray for my healthy baby to remain healthy.

Love you lots little pumpkin

Friday, April 8, 2011

And reality sets in ........ in a big way

  Although it is always at the back of our minds, as hard as we try and keep it at bay - today, this moment, reality has set in .....  in a big way. 

I have been reading a blog which Little Nolan's  mommy has written (Nolan was also a full T18 baby) - "Life after loss" - I am sitting here and cannot contain myself, the tears are flowing  and I seem unable to stop them.  Little Nolan passed on not so long ago and his mother is doing so well but desperately missing her little boy and trying to go through the grieving process

I know that someday I will be feeling and going through the same motions - and I am only hoping that it wont be any time soon. I am sitting here and my chest is closing in, as if my heart is already broken and in need of mending. I feel like I can't breath and like everything is spinning out of control.

I keep thinking will our little angel go peacefully, will we be with him when his time comes, will I be able to hold him and make him feel safe and loved, will we be able to whisper our goodbyes and be able to be strong for each other, will I be able to comfort the girls when they will need me most. Will I have made an impact on Lior's life and been the mommy that he wanted and needed and that God intended him to have .......... I know that God has sent him to us for a reason, I know he is "on loan" and  I know it selfish but I am so desperate to hold on tight, I dont want Lior to be "on loan" - I want him to be mine to always be here - forever - I fear I am not strong enough.

I know he is still with us and I know it seems strange to some  - "mourning a child that is still here" - but I am not mourning Lior, I am mourning what is to come, I am mourning the future, a future that I dont want. 

Although we have learnt to "live in the now", live for every second of every day, we are still human and cannot keep these feelings at bay. Dont get me wrong, I love and cherish my little angel, but now I ask WHY .... why has God put us through this - Why does he feel I am strong enough to do this  !! What is his plan for me.

Thursday, April 7, 2011

Whooooo hooooo - such a relief

Hello big (little) boy - Finally, slowly but surely you are getting back to yourself. Talking away and mr grumpy pants when you dont get your way !!!! But we still love you anyway - even when you are a grumpy pants :) Daddy took you to the surgeon today and he is happy with the way things are healing - WHICH MEANS - we wont have to close the hole and go back to the nasal tube - what a relief. I have been sitting on edge all day - even though all looked good (well to us anyway)and hoping that your wounds are healing the way they should be. So 5 more days and you can have a proper bath - in the bath - and not just top and tailed - I think that is the reason you have been a little on the grumpy side, after all you just love your bath and putting your head back in the water and just having a good old soak. Not too long now my little munchkin.

04-04-11 cont

My mind was just racing and screaming a deafening scream. Do we leave the hernia and it will start to strangle the bowl and poison your body, leaving you in so much pain and probably eventually the inevitable, or do we take a chance (another chance) and put you under again, knowing it could kill you . We really didnt have a choice. I think the doctor noticed I was about to crack cause he joked that he would prescribe mommy some valium ? at this stage I don?t think that would even help to settle my nerves, maybe about 40 bottles of vodka would do the trick ( and mommy doesn?t drink), other than that I don?t think anything would settle my nerves. So we went for a sonar and thank goodness the hernia had not strangled the bowl, so we still had some time. We scheduled the operation for Monday, and the doctor decided to give us a weekend pass, I mean after all you and mommy have been in the hospital for pretty much most of the March. So Friday came and we were a little excited that we could be going home ? AGAIN NO SUCH LUCK ? the surgeon came in for his rounds and decided that we would have to operate that afternoon, so yet again ? the long walk to my private little death trap ? and the long long long wait. You came out of theatre and this time you were crying, you didn?t even settle when they put you in my arms. When the nurses came to fetch you, I put you in the cot ? mommy didn?t want to walk with you, I mean heaven forbid I had to trip or something. We got you into the lift and just as the door was closing you started choking, even the nurse panicked a little ? straight back to theatre for a little suction. Ok so now your mouth is clear but you just won?t settle and the longer it takes the more you battle. It took a little over two hours but you eventually settled, mommy sang to you and somehow when you could hear me above all the crying you calmed down a little ? I just sat there saying to myself (~~~~~~I cant, I just cant anymore, but I have to, I have to be strong for you, but if I can?t be strong for me how am I going to be strong for you ? pull yourself toward yourself you silly woman ~~~~~) ? the anaesthetic had really affected you this time round, it has closed your chest and now you are on even more meds than ever. So now, no more hernia and the surgeon also decided to bring your testes down as well, considering they had not come down yet. Although the third anaesthetic was the hardest on you, you have recovered quicker. So finally we got to go home yesterday, it felt like heaven, and as though we haven?t been through enough, you decided to scare the living daylights out of me last night and stopped breathing, my heart did somersaults and spasms and heavens knows what else, I called for daddy, not sure how it did not come out as a scream, but subconsciously I think I knew I had to stay calm for the girls sake, so they would not start panicking. This has been the worst one yet, I have never seen your face so spasmodic and blue/black and then for you just so suddenly to go complete limp in my arm, no life in you whatsoever ? I really thought this was it. You came round relatively quickly after that you were as white as your babygro, you gurgled something to me as if to say I am ok mom and decided it was time to sleep ? leaving mommy shaking from head to toe and inside out and trying so hard not to cry in front of the girls (who in all this time, to my surprise stayed so calm) ? I just couldn?t anymore, the tears just flowed.
Daddy and I were expecting a sleepless night last night, but to our surprise you slept well, even though you had me awake from 12 to 4 this morning, we still felt like we had some sleep and this morning you looked just like yourself, our beautiful sleeping little angel. Thank you for being so strong my angel boy, thank you for giving us the strength to carry on ? we love you so so so much my precious precious angel.


Morning my precious precious little angel. Mommy and daddy thought the last two weeks were from hell, I guess we were wrong ....... the week we came home from the hospital, the first two nights were bliss and then from there it went downhill. All you did was cry and the more you cried the more the g-tube leaked, what were we to do. On Tuesday daddy decided to take you back to the surgeon as he was concerned the wound was not healing the way it should be. The appointment was scheduled for 10:30. We thought that we would have to put you on antibiotics to clear any infection, WE COULDNT HAVE BEEN MORE WRONG !!!! Daddy phoned me, (mommy was at work, didn?t think it would be necessary to take time off, after all I want to keep that time for when we really need it), the second I heard his voice ( or should I say he heard mine), for the first time daddy broke down and cried and as quickly as he cried, he stopped ............. again wanting to be strong for mommy (sigh) ..... men ....... why can?t they just let it out ? ...... My heart went straight to my feet, you had an infection and not one that antibiotics could clear. You would have to go under anaesthetic again for an emergency operation. With all your crying, the acid in your tummy had damaged the tissue around the wound and the surgeon would have to close the hole and we would have to go back to the nasal tube. ALL OF THIS FOR NOTHING, ALL THE PAIN, TEARS, FRUSTRATION AND FEARS, HOW COULD WE DO THIS TO YOU. SO MUCH FOR COMFORT CARE, SO MUCH FOR PUTTING OUR WANTS ASIDE AND FOR WANTING WHAT IS BEST FOR YOU AND NOT FOR US !!!!!!!!!! Mommy finally made it to the hospital with the help of aunty Teressa (mommy definitely was not in a state to drive) ? I think it took about 30 minutes but it felt like a life time. I walked into the ward and when I saw you on the drip and oxygen and all that I just fell to pieces .... again. You went into theatre at about 14:00 and yet again I felt like I was walking into a death trap ? the longest wait of our lives ? I think even longer than the last one (even though you were in for only an hour) ? I just thought ..... will your heart stand it again and yet again I was waiting for them to come out and say I am sorry, we did all we could, his little heart just couldn?t stand it ? but the little miracle that you are you came out perfectly fine, you weren?t even crying !!! ? you are so so so strong, and such an inspiration my little pumpkin. The surgeon, bless his heart, managed to save the g-tube, so we have not had to close the hole and go back to the nasal tube (hala freaking luja) and now you have the mickey which is so much more comfortable for you. You slept for most of the day and night, the doctors decided to sedate you for the evening and you slept like a bomb. I laid there and listened to your breathing for what felt like an eternity, I was so scared that something would go wrong, I mean after all it couldn?t be that easy. Not sure what time I fell asleep, but that was the first night mommy actually got a few hours sleep. I woke up the next morning feeling very groggy and tired but so grateful that you were fine. In mommy and daddy?s state of mind we sort of forgot to bring all your bath stuff and clothes (we had clean clothes and nappies in your day bag, but didn?t have a hospital bag for you) ? how silly could we be ? so mommy decided to go take a break from the hospital and go and buy a few things while daddy stayed with you, in the mean time, one of the nurses/sisters decided to give you a bath so you could settle and feel more comfy, and my worst nightmare, she found a lump just above your groin. When the surgeon came in that evening to check on you, he felt around and promptly stated that you would have to be operated on again ? how much freaking more can we take, how much more can you take !!!!

22-03-2011 continued again

look at you and I think what on earth have we done, how could I do this to you ( I know emotion talking) but we know in the long run it will be for the best. I wish I could take all your pain away. Right now we are both living on very little sleep and lots of tears and I think daddy is living on very little sleep and holding back lots of tears. I love you my sweet sweet angel and I am so so sorry for your pain

22-03-2011 continued

Ok so it has taken me a while to pull myself together, but I think its just cause I am really really tired which makes me really really emotional.
Lets carry on - The nurses were not quite sure what to do with mommy or what to say to me cause I was basically hysterical I was crying so much I couldn?t talk (daddy was downstairs - I think trying to gather himself to be strong for me) and the nurses brought me a box of tissues and tried to console me ..... not quite succeeding. The time came when we had to take you to theatre - they allowed us to carry you in....... "walking the walk" - I felt like a prisoner in my own body, going to a death trap - I know it all seems so negative - but I am human after all and I do feel these things, as hard as I try not to. Anyway, you went into theatre later than scheduled but you were sucking so hard on your dummy and a little restless. Eventually when they came to get you I tried so hard not to cry and I remember saying to you that I would keep your dummy and that you had better come back and get it from me and that I love you so so so much - (I know it sounds silly - but when you are emotional, silly just does not matter. Every second felt like a million years, we now had to sit and wait for two hours and as hard as we tried to block it out, all the negative thoughts creep in - what if !!!! It felt like the doctor would come out at any second and say I am sorry, we did all we could. After two long heart wrenching hours the surgeon came out and my heart dropped straight to my toes, I think he saw the panic in my face because before daddy and I could get to him he put his hand up (as if to say don?t panic) and said that everything went well, there were no complications. Eventually they called us to get you from the recovery room and all you did was cry - I mean what else could you do - but the thing is it wasn?t really a cry it was more like you were saying a distinct owe. Even the nurses in the neonates had a good giggle cause it was so clear. My sweet little angel, hearing and seeing you like that broke my heart. You just wouldn?t settle, eventually the sister in neonates decided that they needed to put you on a pillow on my lap. The second they did this you stopped crying, just like that - like turning a tap off, but not for long. The anaesthetic obviously started wearing off and the pain set in. They gave you all the normal pain meds that a baby would receive post op, but this did nothing, so they eventually had to resort to giving you morphine to ease the pain. So little yet your little body resists so strongly. Even with the morphine running through your veins you refused to sleep, you forced your little eyes open and held on to daddy for dear life, but at least you were pain free, we at least we think you were. Eventually at 8 that evening your little eyes just couldn?t any more, you finally drifted off and had a good night. You slept most of the Tuesday which was good for you, but then we had to try and start weaning you off the morphine, you didn?t do too badly although we did have to up the dose every now and then just to get the pain under control and manage it. Wednesday was good, you also slept pretty much all day and all night - which I was really grateful for cause when you sleep your body heals quicker. Thursday night it all began, colic set in and from 9 in the evening to 3 in the morning all you did was cry - this still has not changed. You are on so many pain meds but nothing seems to work. The more you cry the more the tube leaks - which makes mommy panic (quietly). The surgeon says this is normal, but I still don?t like it. I just wish we could put the peg on, but I know we cant until your wound heals some more. I never dreamed this would be so difficult and so emotional. I mean I knew it would be trying times but not as difficult as it has been.


Mmmmm my little nunu where does mommy start. The last two weeks have been the worst. On Sunday 6 March mommy decided we needed to take you to the doctor the next day as you had a little cough. I just wanted to be safe cause you were going in for your op the following week. By monday morning you were very grump and not feeling great. We took you to the doctor and he admitted you straight away. Over night your little cough had developed into full blown bronchial pnuemonia. My precious little angel, so off to hospital it was. We had you in an oxygen tent for about three days and it worked, with all the antibiotics as well - 500mg a day - enough of a dose that an adult would normally have. The one great thing is we had another heart sonar done and the hole in your heart - yes the one the doctors said would never close - has DISSAPPEARED !!!!!!!! so we thought yay so much better for the anaesthetic you would have to go under. We thought wrong !!!! After almost 7 days in hospital we got to go home, but only for a day, you were scheduled to be in kloof hospital at 06:00 on Monday morning. We got to the hospital and went through all the doucmentation and took you up to the ward. The aneathetist came to see you - he had to tell us whether they would do the op or not - lets just say he was not too excited about your heart. The fact that you have little leakages (not major ones) puts you under immense danger. So we asked should we or shouldnt we and to my surprise he said we dont have a choice, cant leave you with a tube in you nose, - but it would be very difficult and very dangerous for you but they would do everything they can - NOT EXACTLY WHAT I WANTED TO HEAR !!!!! Needless to say all I did was cry and cry and cry and cry and cry ....... and cry. Daddy looked at me and said, well you know we dont HAVE to do this. In that instant we had to make a decision and daddy and I decided that its not about us and what we want, its about you and your quality of life. So we made the most difficult decision of our life to let you have the operation, knowing that there was a chance this would be our last few moments with you. NOT SO EASY !!! - ok need to take a moment here - far too emotional.


morning my little pumpernickle - mommy is glad you are feeling better after last night.

Daddy and I decided to try you on Isomil. This is now the 6th formula we have had you on. Every formula we have tried you take to for a while and then you battle to keep it down, so we have to continously change it. In any event we tried you on the isomil last night and it made you so sick. Normally if you vomit you get it over with and are still happy and smiley, but last night you seemed to be in pain. You brought up pretty much all of your feed and then some. The flem that came up with it was so thick, you really battled. You cried for a long time after that and when mommy eventually got you settled, you did not want to know anything about being in your cot, so we snuggled for a while until I thought it safe to put you in your cot without waking you up. Once you were settled I fed you with the Novalac and although you still battled you managed to keep it down.

Last night was really difficult cause for the first time I have felt like you were suffering and I really had to restrain myself cause I did not want you to feel my anxiousness, I wanted you to feel that you were in a calm environment, but I think you sensed it, cause you just wanted to be with me and gladly so.

So daddy and I have decided to explore the option of the gastric tube. We will have to see all the specialists and make a decision from there. All we want is for your quality of life to be better and if having the tube in the tummy will be better, so be it, at least then we can give you solids without having to dilute it. I hope and pray my little angel, that the doctors will say that you are fine and your little heart and lungs will survive the op.

"Heavenly father, you have blessed us so much and it feels so wrong to ask for so much more, but we continue to ask for your blessings of health, love, strength and courage to make this decision, to know that with your guidance, that whatever we decide together with the doctors, will be the best for Lior. That your loving hands will comfort and nourish him and that he will snuggle under your "wing" and know that he is with the highest power - Amen.


Wow my little snookums 9 months old - a true little miracle.

We had a good but sort of strange weekend, mommy was on facebook T18 mommies site and I came across a video clip of a little boy called caleb, who also has Trisomy 18, also a gorgeous little boy. I managed to get daddy to have a look and he was so intrigued which got him wanting to see more. Now remember this has been very difficult for daddy, mommy's way of coping was and still is to do as much research as possible, but daddy not so much. Anyway we came across another video clip of a little boy called Lane whose mommy has asked to be friends on facebook, anyway he is now two years old and doing really well, but at the end of the clip there was a statement to the effect " we want to change the doctors perception of "Trisomy 18 - incompatible with life" - well my little angel I have never seen daddy so disturbed in all my life - which then turned to anger and then determination. How can someone tell us or decide for parents like us that our children are not worth living. We were so lucky with your doctors that they respected out decision to bring you into this world and support us as best as possible. Overseas this is not the case, children like you are considered not worthy of life - a complete disgrace and it is you my little angel and many more children like you, that prove them wrong. I am so proud of you !!


Mommy is not quite sure how to feel today, I think I am just tooooo tired to feel anything right now.

The last three nights you have been so restless that we have only managed to get at least two hours sleep every night. The night before last you had another seizure, not a severe one, but bad enough. You were fast asleep and I put you down in your cot for the night and quickly went out the room to make a bottle for your next feed, (something I never do, I never leave you alone, but you were sound asleep, breathing easy and restful). I was standing talking to daddy while shaking/mixing your bottle and next thing I knew there was a horrible screetching sound coming from the room, normally when you have a seizure, you dont cry or moan, but this one you just screetched with the rest of the symptoms you have. Fortunately it did not last as long as the previous one, so you settled very quickly. Although I know I couldnt have stopped it, I feel so guilty for having left you for two minutes. NEVER AGAIN !! Daddy and I have decided we will split your meds and give you half in the morning and half in the evening as it makes you sooooo restless, maybe it will be better this way and you can work most of it off during the day. I think daddy had enough of my umming and aahing every ten minutes last night and then to top it all off, not sure how the heck it happened but I knocked over a jug of water which fell into your cot and eveything was soaking wet. So I padded the pram with blankies cause during the day (when you decide to have a nap, which is not the norm) you love sleeping in it. SO I put you in there and well still every ten minutes umming and aahing (from me of course) - not sure if it is tiredness or frustration or what. It was a long day yesterday off to work at half 6, home by 6 and then off to youth with the girls for their little function and eventually home just after 9. I think right now mommies body is screeming for some sleep, but we will push along and try to remain calm and unemotional and patient. (easier said than done right now). I think you are teething more than normal right now cause dad says you had a really runny tummy this morning and you didnt keep any of your morning feed down. But I am not really too concerned about that, you have kept your feeds down very nicely the last week or so. I guess mommy is just feeling very, lets say - overwhelmed today and the fact that I am not with you is making it even harder. Missing you terribly today my little munchkin


looking at peace and completely comfortable this morning - My wish is for you to be this way everyday. Monday wasnt the best of days, daddy phoned me at work to say that you had a bad seizure, or should I say a longer seizure than normal, in fact we think that you had one and just as you were coming out of it another one came along and as drained as you were, you were still the happy little Lior that we know. I remember trying so hard not to cry when daddy phoned me, but I just couldnt help myself, I think the fact that daddy, who is normally the strong one was emotional, so I knew it was not a good one. This definately took its toll on daddy, emotionally it drained him. He fell asleep just before 17:00 and only woke up the next morning. Something I think his body desperately needed. We took you to the doctor and he said he expected you to start with siezures long time ago. He said he is very happy and surprised at your progess, and his words "you guys have done so well, and to think that I didbt even give this baby a chance when he was born" - I have so much respect for him, cause that is not something that most people would admit to. In any event, your chest is clear thanks to the daily saline nebs. This has sort of become a ritual for you, you sit comfortably in front of the tv and let it all just happen - my happy little miracle.

We started you on the meds for the seizures. Daddy and I were scared to give it to you at first cause we were not sure how your body would react to it. Daddy still said to me that he was not going to let you sleep in your cot and that you would sleep in bed with us. So we decided to give you the meds early so that we could monitor you. Well it knocked you for a loop, within ten minutes you were fast asleep, there were no side effects except for a little restleness. My only concern was that the medicine would make you like a "zombie" but it hasnt, so my heart can rest. You have stayed as talkative and as happy as you always are. I think many people need to take a lesson out of your book, you have had so much going against you, yet you fight back and still stay happy and shine your little light on everyone around you, no matter what the circumstances are, no matter how crappy you are feeling your little light shines ever so bright!!


When I left for work this morning my little angel, you were still sleeping, oh how I wish I could be sleeping with you. You had a seizure yesterday and nearly gave ouma heart failure. Fortunately Tannyth was there and sort of guided ouma through what she had to do. So needless to say you were restless and iffy the rest of the day and wouldnt stop crying until daddy got home and took you, then we still had to go and make things worse by changing your tube. Although you put up a big fuss, it wasnt as bad as normal, I just dont think you had the energy to fuss. BUT after that, you seemed to have all the energy in the world and I only got you to bed after 01:00 this morning. Have a headache from hell and feel like I really need matchsticks to keep my eyes open.

Your other big sister - Tia - started high school today, she was super excited and so proud to walk into the school with your other sister. It was just so heart warming to see Tannyth looking out for Tia - Enjoy the harmony while we can:).

Although I know Tia is so excited, her heart is not where it should be today. When I got home on monday, I saw that she had been crying and was not herself. It turns out her daddy was very ugly to her and she is so heartbroken and somehow I think you knew cause you talked to her non stop and made her feel a little better while daddy was trying to council her and keep her self esteem up. Sometimes I just dont know what I would do without daddy, he is definalty my rock.

You are also going to meet anuty Sharon for the first time day, she cant wait to meet you - shoo okay, getting a little emotional right now and battling to hold back the tears, so I think i will write some more a little later. Loving you so much. Love mommy


My little munchkin, when I got home yesterday the girls were not in the greatest of moods and neither was daddy or ouma. They said you did not keep any of your feeds down the whole of yesterday and just would not stop crying. Tannyth eventually started crying cause no-one could get you to stop until you eventually fell asleep at about 16:00, and a quick nap it was. When I got home you were all talkative and not letting anyone get a word in edgewise. I gave you a nice warm bath which relaxed you completely and when I was dressing you, you decided to paly peek a boo, just toooooo cute. I eventually got you to sleep close to 22:30 last night with your feed, got into bed close to 12 and was up at 3 again to feed you. Then not quite sure how, but you managed to rip the plaster of and pulled your tube out somewhere after 4. Dad was not impressed, this would mean that we would have to start the day feeling incredibly guilty and depressed when putting the tube in and feeling like we are hurting you, but this morning I put you on the table and you were sleeping, didnt even blink, - ok a stretch here and there but you didnt fully wake up. When dad put the tube in you fussed a little but not much, by the time you realised what was happening the tube was in and mommy quickly calmed you down and you fell asleep within two minutes. What a relief at least we didnt have to panic with you not breathing or anything. Now we know that when we need to change the tube, to do it early morning when you are sleeping. Lets hope it happens the same way. Anyway you kept your feeds down last night and hoping that you will keep them down today.

Tia is in her element, cause all your other sisters are sick so she is the only one that is allowed to hold you and she is just loving it .... having you all to herself. Well my little one, in the next few days the house is going to be very quiet, your sisters will be going back to school so at least they wont wake you up in the morning anymore, not that you really wake up before 10. When you want to sleep, nothing seems to bother you. I guess it will be back to fighting with Tia to try and drag her out of bed in the morning. she is like you, loves her sleep - when she wants to :-)

Missing you much and cant wait to get home to be my family. Love you lots!!


Happy new year to all, may 2011 be a wonderful and prosperous year in everyway possible.

Lior is doing great, although he is a little snotty and coughing a bit, but nothing serious, as long as I keep nebbing him he will be fine. We had a wonderful christmas with the entire family and a quiet new year with the kids, I think I was asleep beore the new year even kicked in !!

Lior is now 8 months old and going from strength to strength every day. He has learnt to turn himself in a full circle when he is lying in his play gym and can entertain himself for ages. We figured out he just loves classical music, his whole demeanour changes. He has learnt to play peek a boo with us and is manouvering himself a little more in his walking ring. He is also trying to eat purity, yesterday we managed to get him to eat 6 mouthfuls and then he just gets tired and irritable so we have to tube the rest, but at least he is trying.

Not quite sure what to do about feeding tubes for Lior, the suppliers have discontinued the make that we use, or should I say the length and the next length is double the size of Lior. Its either this or using the weekly tube and I dont want to do that cause the older and stronger Lior gets, the more difficult it is to get the tube down, he fights so much and just stops breathing, and I think I would rather only go through this once a month than once a week !! I will have to phone the world to see if anyone of the hospitals may have stock lying around.

Was difficult coming back to work today, kind of felt like when I had to come back from maternity leave, just did not want to leave my little boy. In any event, I am sure he will love spending the time with his sisters and his ouma.

Yay - well done !!!!!

Well done my little munchkin - I am sooooooooooooooooooooooooo proud of you - you just have a will that goes on forever :) !!!!!!!!!! phhh what the hell do the doctors know :)

Lior has now started to try and roll onto his tummy, he gets it right, but now has to figure out that he needs to move his arm out from underneath him, baby steps - he is doing so well. He is just so full of life and bringing so much sunshine into our lives. Talks non stop, or should I say shouts non stop, loves the attention he gets from his sisters and has even started laughing in his own little way.

The girls are going to be spending christmas with us this year, it is actually their other parents turn but because this may be the only Christmas that we may have with Lior we have asked for the girls to be with us. They are all so excited and so are we.

Just want to wish everyone an awesome and blessed christmas, may all you wishes come true and may God be with you and Bless you in every way possible!!!!

Just dont know what to say anymore

We have had a very trying weekend. On Friday night we had 8 teenage girls in the house, so you can just imagine the level of noise throughout friday night and saturday. We took all the girls to movies on Saturday, the first time we have dropped them off at the mall and allowed them to do their own thing (quite a big thing for me, I find it very difficult to let them go and grow up). While the girls were at the mall, we had to change Lior's feeding tube. I cant even begin to explain to you how traumatic it was for us and Lior on Saturday. Normally it takes us about 5 to 10 minutes but on Saturday Lior fought us with all his might and eventually after 45 minutes we managed to get the tube in. During these 45 minutes of trying to get it in Lior vomitted 3 times and stopped breathing twice. If I could have left the tube out permanent believe me I would have. The older Lior gets, the more difficult it is to get the tube in. We have been in our own little world since then and I am finding it very difficult to come out of it.

I then get to work this morning to find out that one of my colleagues gave birth to her little boy over the weekend (at 26 weeks of pregnancy) and due to complications he passed on this morning, on the morning my little boy turns 7 months old. When will all this stop !! this year has just been horrendous. I cant say I know how she feels cause I still have hope, I still have my little boy. I wish you Gods richest blessing and all his strength through this difficult time my friend!!

I also want to say Happy 7 month birthday my little boy, a true miracle indeed

Christmas wish

Why is it that when a baby naps for 5 minutes they can keep going for another 10 hours !!! Lior only went down at 12 last night after not having slept for the entire day yesterday and was awake at 3 this morning, so feeling a little tired and when I am feeling tired I am emotional. It did not help that I listened to the Christmas wish on highveld this morning. It hit home in a really big way. My prayers and well wishes go out to the family - I know what you are going through - in the same situation. Getting a little emotional writing this so going to log off and hope that the day does not drag !! I fear I wont stop crying today !!


Hi all

Lior is doing well - a little flemy at the moment, so started nebulising him with saline and adrenailine again and giving him physio (which to my surprise he loves - falls asleep). The only problem is when he is so flemy he doesnt really keep his feeds down, but like the doc says as long as it is only a little and its the only way he gets it out, no problem. I started him on purity this weekend, gave him a little per mouth, although he battled a little he took it in his stride and swallowed (takes him a while though), he seemed to enjoy it - well the banana one at least, will have to see how he takes to the vegies - but he did let me know when he was tired and did not want to swallow any more, so gave him the rest via his feeding tube. Was quite a mission trying to feed him with a spoon cause with the cleft palet there really isnt anything for him to grip the spoon with so I figured out that I had to turn the spoon upside down and sort of scoop it off the spoon with his lower gum. Feeding the purity through the tube is confusing cause I have to dilute it with boiled water to ensure that it is thin enough to run through the tube, so in the end I am not sure if I am giving him enough, cause now the feed seems to be double with the water, so I try to ensure that he has half a bottle (small) of purity - I suppose it is enough for him, considering his milk feeds are only at 120ml - will slowyly start to increase it weekly. The only other thing that concerns me is that we have had to drop a bottle, so now instead of 5 he is only having 4 - been so long since we had a baby in the house, I cant remember all these things, and with Lior its just sooooooo different - we dont really know when he is full or when he has had enough or is still hungry, okay the hungry part we are getting a little better at figuring out, he tends to really suck my finger when he is, but he is also teething now so he sucks and bites my finger cause of that as well, at least we are giving him vydalin which also helps (just cant stand the smell of the stuff, sometimes I am glad we giive it to him thorugh the tube cause that stuff is just soooooo ugh !!! . He really is getting to be full of beans now. Loooooves his rattle, has a few bruises from konking himself on the head !! We have also been putting him in the walking ring more often and he is managing to move around a little, mostly out of frustration, but atleast he is trying - one step at a time, after all he is doing things we were told he never would.

I received an e-mail from taurus inc (the baby competition) to tell us that the babies with the least votes would again be taken out and Lior is still in !!! Considering I havent told anyone, besides daddy and the girls and besides my last post - I am really chuffed !!! All in all we had a good weekend, he has been sleeping well and been very cheerful !!

15-11 - 2010

Besides the little niggles Lior had a great weekend. He went to his first birthday party and just cried all the way through - I think the wind was a little too much - when we decided to go home, from the minute I put him in the car he was a different child - smiling and talking and for the first time played with a rattle - the first time he has managed to hold on to one !!! I know you may be thinking so what - but that is a huge achievement for my little boy !!! Lior is taking huge strides everyday, and doing things the doctors said he would never do, all be it a lot later than most babies !!

I just hope and pray that I can keep him from getting ill with this weather constantly changing and I just cant keep him covered at night, even if I put a little sheet on him he kicks it off and if I put warm clothes on him he just sweats terribly and I dont want him to be "wet" during the night - just a no win situation at the moment.... what to do ......


Lior really didnt have a good night last night. For the past week I have been persisting with his "solids" (liquidized or watered down) so that it can go down the tube) and I think that is what is really constipating him, we give him stimulants to get his tummy working which it does and he is normally fine with it, but I think he is cramping really badly, so I decided that I will back off with the solids for a little while and just give him porridge in the morning and slowly build it up. From 9 last night he was crying till almost 12 Eventually he settled and went to sleep and then at 1:45 he woke up screaming, got him settled again after 3 some time and was up with him screaming at 5 again this morning. I just felt like crying myself, his little voice is so hoarse from all the crying !! poor little nana.

I entered Lior into a baby competition - thought what the hell, he is who he is and I am proud of him and love him to bits and iether people will vote for him or they wont. We got an e-mail this morning telling us to go to the site (http://www.taurusinc.co.za/results.asp?category=266200917237) to see which babies have been eliminated from the competition for not having enough votesd and Lior IS STILL IN THE COMPETITION !!! Yay my little pumpkin is soooooooooo gorgeous !!!


Lior had a fabulous weekend - he is looking and feeling so much better and also got to meet his great grandmother yesterday. She is now 86 years old and was so excited to hold him and talk to him. Lior doesnt get to see her cause she stays in Neslpruit and was here visiting her daughter for a little while. I am really glad she got to meet him. I think now daddy and I have to recuperate this week - although Lior had a good weekend he did not let us get muchy sleep - just wanted to talk and after talking all night and being over tired was a bit niggly and the heat just did not help either. I was quite suprised yesterday when he went to sleep at 18:30 and was still sleeping this morning when I left for work. Little angel obviously just had to catch up on some sleep !! I wish I was in bed with him !!


Since Lior has been back from hospital he has been a lot better - a vast difference. The only thing that concerns me is he is sleeping a lot more than normal. Maybe my mind is running away with things, but last night our cat who normally never comes near Lior unless he is screaming (I think she comes to investigate if things are ok - her mommy instinct) - insisted on climbing into his cot last night (Lior wasnt in there - in case you were wondering). We had to take her out atleast three times and she kept on creeping up to the cot and checking on him and then walking away ( I think she did that about 4 times in the middle of the night) She never likes to sleep under the blankets but last night she also insisted on climbing under our duvet and walking over us - now the part of my mind running away with me - Dont animals normally sense things before we do or was it just the storm last night ...... Lior is normally fast asleep when I leave in the morning, and this morning he was wide awake atleast half an hour before I left for work and was chatting away. Am I being paranoid ?!?! Daddy says he is fine, just a little flemmy, but very talkative and completely himself. Maybe I am just tired and just dont know what to think anymore. Maybe its best to just stop thinking and just cherishing !!

6 months

Happy Birthday precious little pumpkin - 6 months old today - what a little miracle !!


It is amazing how quickly one's body gets past exhaustion and you go in to robotic mode. The last week has been difficult. Last wednesday Lior was admitted to hospital - We had continous flem on the chest, and antibiotics and nebulising and he just would not stop crying - we had to run a whole lot of tests to try and find out exactly what was wrong. On Thursday we got the results that he has a virus in the lungs which is attacking the white blood cells and that his lungs are black ( I nearly had heart failure when the doc told us that) - hence the reason the antibotics per mouth or per tube have not been working. - this is due to his little heart not allowing enough circulation to the lungs and having pockets of air that are stuck in the lungs and cant come out and the heart being what the doctors would call "displaced". Unfoturnately there is nothing we can do to rectify this - this is all due to the syndrome. After 8 days of intravenous antibiotics and nebulsiing my poor boy every six hours with adrenailine and twice a day with pulmicort, and having physio and only getting into bed at 2am and waking at 4am, we are finally home from the hospital. I think Lior is happy to be home as well, he was just entertaining the girls all day yesterday and "slept like a baby" last night - we both really needed it, and now it feels like we have had too much sleep and totally exhausted from that. I cant say I ever want a repeat of the last week - its not the fact of being in hospital or anything like that, the scary thing is that any little virus, cold or anything similar could take my little boy away from us. The last week has definately taken its toll on Lior's daddy - not having either myself or Lior at home for the last 8 days has made it difficult for him, not the fact that we werent there, but the thought of how silent and sullen the house will be without our little boy in our lives. Now we need to carry on being positive and we are happy to be home and daddy and the girls are happy to have us home.
I met another lady at the hospital - she was in the room next door to us - yes we were lucky enough, or the doctor was kind enough to arrange a private room - her little boy is now 8 months old, he has been in and out of hospital for the last few months. They know he has muscular distrophy ..... how ever you spell that - and suspected cerebal paulsy - he is just the most gorgeous little boy, red hair, huge blue eyes and just full of life. On Friday last week they were discharged and re admitted on Tuesday night, it now turns out that the blood tests indicate that he has a virus called SMA and will probably not live to see his second birthday. Mommy my heart goes out to you, for once I can say I know how you feel. We at least knew before and chose our path, you have only just found out and your path has been chosen for you. Be positive and cherish every moment that you have, the good and the bad, this is what will help you stay strong.
Lior is back home and we cant tell you how lovely it is to be home and in our own environment and to know that we have a little more time with our boy. Love you my angel !! I also just want to thank all my friends and loved ones and especially my colleagues who have been so full of love and support and been a huge shoulder to cry on !!


Everyone keeps telling me I need to break down some time and I guess today is that day, not sure why but I cannot seem to stop the tears and feel like my head is in the clouds - or should I say in a thunderstorm. I owe my daughter an aopollogy, snapped at her this morning and it was not called for - which is making me feel even worse. and in the process managed to close the gate this morning and pull it right off its hinges. I feel like I just want to climb in a little bubble for a few days and just cry till I cant cry an more. Lior is doing well, still a bit chesty so will have to keep an eye on that. He has been sleeping well the last few nights - not sleeping during the day though. Dont know how he does it. He is becoming a real little character with his facial expressions, especially with his eyebrows. He is sucha cutie pie. I put him in the walking ring this weekend, he loves it for the first five minutes then starts getting a bit irritated. I suppose a little bit every day and he will get used to it. At least it will help him strengthen is back muscles so he can start sitting by himself. One step at a time - it is going to take while.


Lior had a great night last night and the night before, so decided to give his daddy a big scare this morning. Had a bit of a cough and just stopped breathing, something we have gotten used to - well as much as one can get used to - but when daddy panicks I know it is not good and that it has been a serious one, cause he is the one that always stays calm. Says Lior just went stiff and then blue, purple and then black and then limp. I cant begin to tell you how scary it is when this happens. Lior's dad and I decided in the begining that we would let nature take its course and when the time comes for Lior to leave us, we will not try to resucitate him. This is one of the most difficult decisions to make and I know most people would say how could you do that - but how can we keep a little soul going for our own selfish reasons. But we have decided if it is one of his little "episodes" we will do what it takes, but if Lior has an apnea attack we will leave it in God's hands. His daddy is so tired, he does not let go of the emotion and tries to stay strong for all of us, but I can hear in his voice today that he is taking strain and feeling emotional. I just want him to know that I love him dearly and I know that he deals with this in his own way and that does not make me love him any less. He has been a gift from God to me and my daughters and has made us whole again. We love you so much !!


Feeling like i have been dragged through a bush backwards today -definately taking strain.

It is scary how children can get sick, literally over night. We went to visit Jacqueline on saturday and had a lovely day, no indication whatsoever that you were not feeling so great - you were your normal happy bubbly self. On Saturday night you were niggly so we did not get much sleep and then on Sunday you just didnt stop screaming to the point that you kept on losing your breath and then being completely pooped. We would get you settled for an hour or so and then it would start all over again. We took you to your paed on Monday and you still screamed in the waiting room, but the minute we walked into the doc's office, you were chatting away as if to say, look at me I am fine - nothing wrong. Wish that were the case. Yet again you have developed flem on the chest and we have to nebulise you and put you on antibiotics . The doc says with Trisomy babies it is common to have the chest infections - my worry is that it will get harder and harder for you to recover from the infection every time you get one. He also held your legs and noticed how your one little leg shakes, as if you are resting it on a nerve, he says it is a common example or sign that you are not neurologically normal. Although we knew that this would be one of the downfalls of your syndrome - but it does not seem that you are not neurologically normal, yes you may not be as advanced as other babies but your are learning. He was also amazed that you were "talking" and responding to us and like wow he can hear you and respond thats amazing. No, its not amazing, you are as normal and as perfect as can be !! Anyway we got you home and nebulised you, boy did you scream and at 5 months you are so strong that I battle to hold you. You were a little better after that, no more screaming. Gave you a nice bath and nebulised you again, this time I think you were just too tired to even bother fighting, even your llittle eyes were bloodshot. We fed you and put you to bed. You had such a good night, restful, and are all smiles again today. I am so glad we did not wait to see what was wrong. We just cant take any chances


So i spoke to the supplier of the feeding tubes and he wants to charge me more for the tubes than what the hospital charges - here is the funny thing - the hospital orders the tubes from them and I get them cheaper from the hospital - how does that work - Isn't the supplier supposed to be cheaper?? In any event he told me that they will be discontinuing the tube I use for Lior so have now ordered 5 tubes - thats all they have, not sure what is going to happen after that. We dont want to have to go back to the 3 daily tube - just too traumatic for all of us. I am proud to say Lior has been trying very hard with the bottle and have found that our little boy cant stand the taste of anything sweet we have tried all the purity juices and he just gags when he tastes them - wish I could be like that !! Our hope is that he will be able to drink a full bottle and that we will be able to remove the tube, we are hoping that his little heart will allow for this, he gets tired very quickly when he drinks the bottle - but yet there are days where he will stay awake and play the whole day! Last night was not the best experience though, after letting Lior drink from the bottle I was winding him and he brought up a wind, but also some milk/flem at the same time causing him not to be able to breath, he went completely blue, was thrashing about cause he could not get any air and then just promptly went limp - My heart went straight to my toes and I panicked quitely, I gave him a smack on his back, a little harder than I normally would and he seemed to get some air, got his colour back and then went as white as a ghost, it took a lot out of our little munchkin, this pretty much put me on a downer for the rest of the evening. I decided to get into bed early with Lior and not wait until his late feed, and as wonderful as my hubby is, he did the late feed and let me get some rest, - just love you to bits my angel !! Just really on the tired side today, think its cause I had more sleep than normal, but probably cause of all the emotion that went through my head last night as well. One doesnt realise how draining emotional strain can be. We are blessed to have another day with our little angel and his light continues to shine for all of us. May God continue to let your little light shine !!


Besides the fact that you keep pulling your feeding tube out, (3 times within 3 days) I am so proud of you. Daddy decided to use a Dr Brown teat yesterday with your bottle instead of the one specially designed for a cleft pallet - of which you actually refuse to drink from - and you drank about 40ml on your own. To others that is not a lot but for you and for us that is a huge accomplilshment - although it took you an hour to drink that much, you did really well, you battled to swallow, but not as much as you normally would. Well done my little angel !!! Love you lots


What a mission. Have spent most of the day on the phone to get a feeding tube for Lior. Can you believe there is only one hospital in the whole of Gauteng that stocks it- ok others do but they dont stock the size we need. They keep telling me it does not come in the size I am looking for. Am i freaking dilly - I could have sworn the tube Lior has in now is 56cm - they keep telling me it only comes in 107cm. Bearing in mind that Lior is only 54cm tall and as it is, it takes atleast 1.5 to 2 hours to feed him. Can you imagine if I used a longer tube, it would take me four hours. I would probably just finish feeding him and then have to start again, considering he is being fed every 4 hours !!! Are these people insane. Actually why do they put people in these positions when they have no clue of what they are doing. Okay I am being mean now, a little on the tired side so I am allowe dot be. In any event I have managed to find the supplier of the tubes - what a relief and they are closer to home !! so from now on we will get it from them, at least they know what I am talking about !!!


Wow the last two days/nights have definately not been the greatest. The night before last we were cuddling on the couch and about ten minutes before your feed, you decided you didnt want your feeding tube in any more and promptly pulled it out - okay not on purpose, you were playing and managed to get your little finger hooked on the tube and pulled it out. Some how you have managed to learn to tighten your stomach muscles when we put the tube in, so now we have to wait until you take a breath and slowly inch the tube into your tummy, and boy can you hold your breath. Last night mommy only got you into bed close to 12pm and by 2am you were a little niggly. I cuddled you and got you to settle. I put yo back in your cot and by 3am you were niggly again, so I turned you over to your other side and in the process I somehow managed to pull the tube out !!! I feel so guilty. It took a while to settle you and once you were settled you decided it was time to play, in the mean time, daddy was sterilising your tube so we could put it back in. So, now we have you settled and have to unsettle you again, my heart broke, you cried terribly - surpised your sisters didnt wake up. We eventually got you settled by 4am and put you in bed with me to sleep, by 4:30 am you decided you did not want to be in the arms any more and I put you back in your cot. By this time I feel like my eyes are going to pop out my head I am so tired. Daddy decided he would feed you so I could try and get some sleep before having to go to work, but I did not sleep to well, I just felt terrible that I pulled your tube out and had to put you through all the trauma again. Sorry my little bunny, love you lots !!

When I got home yesterday I could see daddy was not entirely himself and he told me he had a very emotional day yesterday. Now dad being dad and I suppose being a man, it is very hard for him to show emotions, besides the fact that he tries not to because he feels he needs to be strong for mommy and your sisters. I am glad he did. It has been a long hard road so far - loving every minute we have with you - but as hard as we try it always remains in the back of our minds - will today be the day, will you prove the doctors wrong again and continue life past 18 months. Every day with you is such a blessing

HaPpY HaPpy

Happy 5 month birthday my little miracle pumkin !!! Love you lots !!

Cherish the light

I found myself asking the question again yesterday "How can one's heart be so full of joy, happiness and love AND feel like it has been shattered into a million pieces at the same time". I guess I was having one of those moments where my mind was wondering to where it shouldnt be going.

Today I found myself in complete and utter awe ...... tomorrow Lior will be 5 months old ............ how quickly time goes by. We will celebrate his "birthday". I have been looking at photos of our little miracle since birth and although he is still so little (the size of a new born baby and weighing just over 4kg) he has grown soooooo much. Doctors said he would never do things and would be severly deformed and have severe mental retardation and that it would be best for us to abort. NEVER did we ever consider this, we needed to give our little boy a chance at life and he has grabbed it with both hands and holds on tight.

I look at the milestones he should be reaching, yes he has not reached all of them but he has reached most of them for his age - he has learnt to role onto his back and to his side again, he lays on his tummy and lifts his head and shoulders (doesnt like this position at all) although he does not smile as much as "a normal" baby would he still smiles (something the doctors said he would not do). He holds his hands together and manages to get his two fingers linked. When he is on his little play gym, it takes a while but he does eventually try and reach for the toys, although he cant grab them he still tries. On Saturday he also figured out how to suck his thumb, so yes he has not reached all the milestones that a 5 month old baby would normally but he has far exceeded everyones expectations. ALthough he is susceptible to infections and sickness he still fights and stays strong and continues to be a happy baby, dont get me wrong, he still has his litle tantrums when he wants to - and the difference for us ..... although it scares us at times we cherish every moment, every tantrum every little sound that he manages to get out, even the frustration on his face when he can't get the sounds out (due to the cleft palet).

I got an e-mail from Jay yesterday and after a lilttle discussion her advice to me was .................. "live for each day you have him enjoy the love and joy he brings you and love him like there is no tomorrow, because in the end that will help you. The love and joy you shared........" Very hard words to read but ever so true !! Just looking at his pictures and remembering our moments the day before gets me through the next day when I am at work.

Jay's little girl passed on in November last year - little Jess also had Edward Syndrome. She was 18 months old. I dont know Jay well, but I look up to her, she is kind and generous and is more than willing to share her feelings and advice with me. This means so much to me, she has been through what we are going through at the moment, she knows every incling of feeling that passes through us as we experience every day. Together we want to let the world know !! Support groups/information in South Africa is very limited and doctors etc are not very forthcoming with the information. I must say though we have been very lucky with our doctors, they have supported us through all our decisions and not treated us any differently, this has made the world of difference to us and we want to acknowledge and give thanks to them.

Not many people know about Edward Syndrome/Trisomy 18, we also thought it to be very uncommon/rare, but research has shown that this syndrome is the most common after down syndrome, the only difference is, T18 is not compatible with life, 85% of babies are born to heaven or the mother miscarries in early stages, 10% of children born with the syndrome do not live past their 1st birthday, that is why it is so important for us to drown ourselves in little Lior's spirit and bask in his light that shines continously.


I got home on Thursday and you were sleeping, so I decided to make a photo wall in the lounge, it looks lovely, but everytime daddy walks into the lounge and looks at all your photos he becomes very emotional, which you know is not like daddy, he likes to keep his emotions in check. The girls got home on Sunday and they just love the photos too !!

We had a good public holiday, spent the day with family at your aunty's house and she just kept you entertained most of the day. By the time we got home we were all pooped - it was a long day. Mommy put you down for the night but you didnt sleep well, kept coughing most of the night. I was not taking any chances, took you to the doc and you seemed to have caught some kind of virus - which in your case is very dangerous. So yet again mommy has to do what you hate most, nebulise you. Fortunately its only for a week this time and not 3 weeks, so I think we caught it at beginning stages. The doc says we can't put you on antibiotics cause you have just come of a course of them. But in any event, you were much better last night. I put you down after your feed and you were quite happy to be in your cot, but when I kissed you goodnight, you decided no more I want to be in bed with mommy and daddy - and yes you got your way - and only with the greatest of love and pleasure !!

Daddy and I decided we needed a day out yesterday and went shopping, yet again you just loved all the different things to see, and again it never seizes to amaze me how complete stranges just want to touch and cuddle you - it is as though you have this light shining through you that everyone can see and wants to be a part of.

God willing my little angel - your light will continue to shine. We love you so much !!


Yay my little bunny !!! you had such a good day yesterday. You were so talkative and just wanted to play it was so wonderful. Although mommy feels like I have been run over by a bus, today my heart is so happy. Your are so gorgeous !!! love you my little munchkin



Your little footprints are travelling all over - shining lots of light and love on so many people.

You almost gave your ouma a heart attack yesterday, either you were trying to clear your throat or trying to get your tummy to work, but you stopped breathing aand went blue, you took longer than normal to recover. Ouma has not experienced it with you yet, so needless to say she panicked and so did your Diana - Yay Tan to the rescue, cause she has been around us when it happens and sees what mommy does, she kept a calm head and told ouma to put you on your side, blow in your face and pat your back and then phoned daddy and told him to hurry home. Its amazing that a 15 year old can stay calm in a situation like that. - Needless to say you were pooped after that, had no energy whatsoever. I spoke to daddy this afternoon and he says you had another little episode today. Mommy needs to keep an eye on that, you seem to be having apnea a little more often than normal and that really scares me, I am not ready to let go :-(


Thursday night definately was not a good night - you just wouldnt sleep and kept on crying - no matter what we did it didnt help, even your sisters came running into the room at 4am cause they thought I hadnt woken up to your crying. Needless to say mommy didnt go to work on friday - probably would have had to put match sticks in my eyes. We decided to take you to your paediatrician and well you have a slight ear and throat infections, thank goodness we took you and caught it in the beginin stages. Friday night we still didnt have much sleep - bearing in mind this is now the 4th night in a row, but you were a little better. You were so bushed by saturday I put you down at 23:00 and you only woke up at 08:45 on Sunday, all refreshed and ready to go. At least you were feeling better. We went to visit your little neice on sunday, she is soooooo tiny and boy does she have a voice on her !! Your uncle was so happy to see you, but the emotions got the better of him and he started crying and then mommy was crying and granny was crying and then the girls started crying - wow what an emoional family time. We are with you all the time so it is natural for us to feed you through your tube, and see it taped to the side of your face, (actually we dont really even see it any more) but your uncle seemed to battle with the emotions. For the one person who did not want me to go through the pregnancy, he loves you so much !!!!


Dear Lior

Caroline came to see mommy yesterday and it was great talking to her, but it also opened a whole mine of emotions. I think yesterday was the most difficult day I have had since being back at work. My thoughts just spun out of control. When I am with you it is so natural and nothing else but my family matters. But When I am not with you the fear sets in.

I fear most that I will not be with you when your angles come and get you, that I will not be able to hold you and cuddle you, that I will not have a chance to say goodbye and whisper to you that i love you one last time. I fear the pain and loneliness that your daddy and your sisters will feel.

Little Ethan came to visit yesterday and normally I wouldnt think of it, but yesterday it hit home, that I may never get to see you reach those milestones, walking around with our keys in your hand, and trying to kick an apple, walking under my desk and hearing you laugh, this is why I treasure every second I am with you. Your different cries, your coughing, your sneezing, the way you love to be without a nappy, and how you arch your back when you are in the bath until your head is in the water. How you talk to your sisters when I am dressing you, how you love to have your doekie against your face when you want to sleep and how at times you dont want to suck your dummy but my finger, I try so hard to keep these imprinted in my mind, I am so scared that I will forget.

How can you heart feel so much Joy and happiness and also feel like it has been shattered into a million pieces at the same time

I love you


You were determined yesterday not to have your feeding tube in, you pulled it out twice !! I think you almost gave ouma heart failure - but thank goodness daddy came to the rescue and put it back in - you definately were'nt to impressed and didnt want much to do with dad for a little while - so small and yet you know exactly what you want. Daddy said you settled very quickly but I knew we would be in for a long night - we always are when we put a new tube in.

Boy oh boy did you give me a hard time with your evening feed - it took almost two hours to feed you. We got you into bed at about half past ten and I think Mommy and Daddy just fell into bed we were so tired, but that didnt last long. At 00:30 you had me awake and for the life of me I just could not figure out what it was that you wanted so we were up and down - in the bed with mommy and then back in the cot - changed your nappy - back in bed with mommy - back in the cot and so it went on. When you finally fell asleep it was 04:30 and time for mommy to wake up and feed you - What a night. Feeling and looking a little like a zombie today but I dont mind - you are most definately worth it !!


Grrr !!! it is so annoying when you are ready to publish your post and you lose everything you have just written, so lets try again.

We had a good weekend spent time quality time with the family and went out for a change. We dont normally take you out that often cause I dont want to make people feel uncomfortable with your feeds - but now I just dont care - its not natural for others but its natural for us.

We took you to the mall on Saturday and you just loved every minute of it, you did not want to be in the pram, you wanted to be in our arms just so you could look at everything, you were in your element "talking away" looking at the lights and as daddy says - talking to your angels!!

Everyone kept asking us how old you are and were so suprised when we told them 4 month - they all thought you were only a couple of days old !! - okay you are tiny, but you are a lot bigger than a few months ago.

The morning did take a bit of an odd turn though, two ladies asked us how old you are and why you have a tube in your nose - so i explained to them that you had Trisomy 18 and naturally they asked what it means and I told them all about it - I definately did not expect the reaction I got - the two of them looked at me and started crying - two people I have never met before !! - I rubbed the one ladies arm and said its ok and then I had to walk away - Your sister was very uspet with me, she kept on saying that I must go back and talk to them, but the thing is, how do you comfort someone you dont know and especially when it is something that is so close to your heart. I know one of the ladies is expecting so I am sure millions of thoughts went through her mind, but I am sure her and the baby will be fine and I wish them all the best.

Mommy is a bit on the tired side today - sort of living on maybe 3-4 hours sleep a night - Daddy stayed awake with you the whole of Saturday night so that mommy could sleep but without the both of you in the room, mommy did not sleep much. Right now, if we are lucky we get maybe 3 hours sleep a night. You didnt have such a fantastic night last night, you were very restless and needless to say I jumped up every time you ummed and aahed. Somehow you manage to wiggle yourself under the blankets - maybe you are like daddy - you like to sleep with the blanket over you face. We eventually got you settled before I left for work this morning - you fell asleep straight away - oh how I wished I could snuggle up with you. Back at work and missing you terribly - longing to be home

10 September 2010

Oh my sweetheart, my heart was so sore when I was at work, knowing that you did not have the best of days and when speaking to daddy I could here you crying in the background, that made me feel even worse, that I could not be with you. But you are so good, even though you didnt keep all your feeds down, you cried a little but quitened down and relaxed very quickly. Daddy says you were watching Scoobie Doo with your sisters - I am sure they enjoyed that.

Wow , what a busy day for you today, driving around with daddy - I am sure you were not too impressed, after all you dont like the car very much.

I missed you this morning, not having done your feed seemed to take away a vital part of my day. I cant wait to get home to you and your sisters. Yay - your sisters arent going to their daddy this weekend, they will be spending it with us, cant wait. Although they are not impressed, they had things planned - teenagers what can we do. At least we get to have family time this weekend, and we are going to meet your little neice tomorrow, so excited

8 September 2010

It is still so hard to leave you every morning my little angel, and I dont think it will get any better.

At least when I got home last night you showed your excitement to have me home and that just made my heart swell with so much love. Your sisters are loving every minute that mommy is not there cause they get to change your nappies and entertain you for most of the afternoon and when I get home I think they are quite relieved to hand you over! - Ha they thought having a baby was easy !! I love the fact that they get to do these things with you, they are building memmories that will be with them for ever

It gets harder and harder every day and I feel more guilty every day cause I know that the girls are not getting as much of the attention that they should or want to get - I just need to be with you every second I can !! I know they understand but I am sure they feel it the lack of it right now - I dont know how to divide myself :-(

I found a website today where a father has made an amazing dedication/memmory of his little girl who has passed on. She also had Trisomy 18. I managed to get in contact with him and he is quite happy to help us answer some questions - obviously to how it pertained to their little girl - but maybe some of it can help us and give us support.

On to happy news - Your little niece will be welcomed with loving arms into this world tomorrow. Your uncle is so excited and cant wait to meet his little angel - I cant wait to meet her either. I am not sure of her name yet, they havent told anyone, they want to introduce her when she is born. We will have to take you to meet her in a little while.

I am sitting here and counting the minutes to when I can leave and get home to my family. I love you all so much