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.

Thursday, December 6, 2012

Great news

Morning my previous little monkey

You have been home from hospital for about a week now and all is good, except for a little cramping here and there the last two days, but nothing major, actually its pretty much your normal. What we have figured out though, is if we make your first morning bottle a half strength bottle we have very little cramping and crying, and to keep you comfortable we do just that and you seem to be pretty much on the happy side with this and I say this cause you definately are not a morning person, you have to wake up in your own time otherwise you are a real little mr cranky pants,  and in the last few days you have not been woken up by any cramping and have actually woken up out of your own and been such a happy little boy, smiling, laughing and rolling from side to side ............... such a pleasure  (sigh)

Okay, so just before you came home from the hospital, your doctor decided he wanted to run some tests on your thyroid and I am so happy to say that your thyroid is functioning very well. When I spoke to your doctor, the one thing that he said was that if he had never met you and only looked at all the results of the tests that had been done in the last few days, he would never know that you are not a "normal" baby and well mommy's response was "well actually, he is a normal baby, he is OUR normal" !!! .... even though I was speaking to him over the phone,  and I know it sounds crazy to say this but, I could almost "hear" his smile on his face ..... oh how I love our doctor. We are so blessed to have such a compassionate and caring person who is only but happy to look after you.

Some more good news is that we have an appointment in January with an orthopeadic spinal surgeon so that he can assess your spine and hopefully make a brace for you, so that we can either slow down or stop the curvature of your spine ...... I dont really think it would straighten out your spine, well then again you never know, miracles do happen ...... I mean look at you :-) ..... Anyway, mommy is really excited to go see him and hear what he has to say and I do believe he will be more than willing to help you and keep you comfotrable, and once this is done, I am pretty sure we will be on the road to helping you to learn to sit by yourself............... wooohoooooo, I cant wait !!!!

We have also decided to take a break and go and visit your uncle Kevin (daddy's brother) in Natal because we know that the fresh air and just being a way will be so good for you ..... heck what am I saying it will be great for all of us, goodness knows we definately need it, it has been a long and tiring year. So we are going to take a long slow drive and unfoturnately going to have to leave in the middle of the night as this will be the most comfortable for you. Firstly because I can then keep your routine in giving meds and you will sleep most of the way and if you wake up the time you normally do, this should be pretty much around the time that we would arrive there. Secondly, it is too hot for you to travel during the day and being in a confined space and your little body not being able to regulate its temperature, this could be a complete nightmare and LASTLY, I dont have to listen to your sisters nagging, "are we there yet" cause they will most likely be sleeping themselves :-).

Anyway baby face, for now with this really rotten rainy weather, we are nebulising you twice a day and doing "soft" physio to try and keep your chest clear cause we can already notice the slight change and then we will go for a check up the day before we leave just to be comfortable that all is okay.

Thats all for now my little monkey.

Love you lots and lots

Tuesday, November 27, 2012

Rough week

Hello my precious little Angel

Its been a while since mommy has written to you. Life has been a little hectic with work and your sisters writing exams and you not being so well. I get angry at myself because this is no excuse to not write to you.

The last week has been a really rough one and not a very happy one for you. Since Saturday (a week ago) you started being a little on the niggly side and having high temperatures of about 38. On Sunday your fever boke and you were feeling a little better, until about 13h00 that is. You woke up from a nap and definately werent a happy little boy. So daddy cuddled with you a little just to realise that your mickey had started bleeding. We cleaned you up and treated the mickey with the necessary meds and it was all sorted. Not even ten minutes later your mickey was bleeding again and quite a lot. I was a bit concerned so told daddy that we needed to take your mickey out and see if it was the stoma that was bleeding or if it was coming from inside your tummy. So out came the mickey and all the gunk in your tummy that had been irritating you, but no blood. Whew what a relief !!! Again we cleaned you all up and fortunately that was the last of the bleeding.

Sunday night was a very restless night for you and for us ..... non stop crying. Off to the doctor we went. He said your chest sounded relatively good but your throat was a little red. We werent taking any chances and put you on antibiotics straight away. Again I was relieved that treatment could be done at home.

Monday night was a little more rough than Sunday, so much so that I didnt even go to work on Tuesday. Mommy was really tired and kind of feeling like I had been run over by a bus or dragged through a bush backwards, not that I actually know what that feels like and not that I got to get any sleep during the day either, but that was pretty much how I felt,

Up until about 23h00 on Tuesday night you were settled and sleeping comfortably, After that,  well you cried and cried and cried and ...... cried some more. I could hear your throat was sore, but worst of all I could hear that static sound in your nose again. The sound was so loud, it was almost as if someone had stuck a TV up your nose and put it on and couldnt get a signal, resulting in that horrible sound coming out your nose.

On Wednesday morning, daddy took you back to the doctor and he told daddy that your little chest had deterorated drastically within a space of two days and you had lost weight :-( The doctor gave you meds that is a booster to the antiobotic, but sadly this just was not working. You were more miserable than ever.

Thursday mommy took you straight back to doctor, he touched your leg and told us that he did not like the feel of your skin. So straight to hospital we had to go :-( although I was not too happy, we knew that this is where you needed to be because home treatment was just not working :-(  You were so miserable and your little body was so sore that the magical veleron drops didnt even work to settle you.

So with a grumpy and sick little boy and a tired and grumpy mommy :-) they gave us a bed to sleep in instead of the cot. You wouldnt go to sleep unless I was holding you and every time I put you down you would just scream. Besides the fact that I am too short too even climb into the cot (need a chair to get there),  the two of us just wouldnt fit in together ..... Even if we did, I think we would find ourselves on the floor very soon after.

Anyway I told myself that we just had to get through the first day, crying and all. Normally after two doses of intravenous meds you feel better, BUT this time there was no such luck. You only really started feeling better 4 days later and by this time we were both totally exhausted. Although you had been sleeping in the bed with me, it was a very restless sleep and ............... well we all know how it is in a hospital. Supposed to be a place of rest but nothing of the sort.

Mommy asked the doctor if your scoliosis was putting pressure on your lungs, thus causing you to be where you are and uncomfortable. So we did xrays and immune difficiency tests. The results came back that your scoliosis had definately worsened, but that wasnt anything that we didnt know already, but atleast the doctor felt comfortable with the fact that it isnt your spine that is making you uncomfortable or keeping you in any pain. The results for immune dificiency came back really positive - NO dificiencies whatsoever, doc says your immunity is actually quite good. ............. so why do you keep getting so sick ...... Hypotonia ........, this means that you have really low muscle tone (we knew that already) and because you have no muscle tone in your stomach and your back, you battle to get the phlegm up and out, causing you to keep getting pnuemonia .............. a sickness which ultimately tends to take the lives of precious little angels like you. Most people dont understand why we stress so much when you do get sick. Ultimaly it is not trisomy 18 that will take you from us, but something as simple as a cold :-(

Your doc is going to refer us to another ortho doc in January and he says he will probably be able to help us with a little back brace for you and send you to OT and get you to learn to sit. This will definately help with your chest once you can do this - so holding thumbs that we can get the back brace and make things a little more comfortable for you and at least try to slow the scoliosis down.

Only after four days in hospital are you beginning to feel better. Starting to smile and react playfully instead of crying :-), so yay we were finally on the road to recovery !!

This morning, mommy and daddy, together with the doctor decided that you are not ready to be sent home yet. Although clinically you are looking much better, your chest still sounds horrendous. So some more physio and suctioning and new nebs to open the lungs and tomorrow we will see if there is an improvement. We really dont want you to go home and you are only 80% better and then in a weeks time you are back in hospital. Mommy and daddy want you to be 100% better before we come home.

So here is hoping that God will perform one of his miracles on a little miracle and clear your chest so you can come home.

Love you to infinity and back baby boy

Friday, October 26, 2012

So much better

Hey hey my little scadaddle  :-)

So as Murphy would have it, after I brag to everyone about how well you are doing, things go downhill.

A little more than two weeks ago on the Saturday you werent feeling too great so we started you on your emergency stock of antibiotic that your doctor keeps on script at the pharmacy just in case he is away. By Sunday you were feeling much better and back to your normal chirpy and bubbly self, so I felt comfortable with going to work on Monday morning, BUT an hour later when I got to work and had just parked in the basement, I got a call to say that you were battling to breath. So I quickly phoned daddy and we both rushed home as quickly as possible to get to you.  Although I think it seriously was a blob of phlegm that was stuck in your throat because as soon as I got home we took you to the doctor .... and yes again when your nornal paediatrician was away, so we saw his dad and whilst sitting there you decided to just spew it out in the doctors rooms ..... well I guess its nothing they havent seen before .... but after that you were perfectly fine. Anyway Dr R Senior actually told us that he could not improve on any of the medication that we were giving you so off we went back home. I didnt want to take any chances so I stayed home to keep an eye on you and you had a relatrively good day with a few grumpy spells here and there but nothing seroious, well at least up until about 22h00 that evening. You suddenly just started coughing and coughing and coughing and it really sounded like a terribly painful cough and needless to say neither you, me or daddy really got any sleep. So knowing that your regular doctor would be back in the morning we decided to take you back to see him and yes you guessed it, the prognosis was not so great ..... Pnuemonia. So our 8 months of no hospital came to an end.

We quickly rushed home to pack your bags so that we could get you admitted and on the road to recovery. The admission really is the biggest pain in the butt and just seems to take forever. So we decided to take you up to the ward as the nurses knew you were coming and I gave them strict instructions to give you veleron drops about 10-20 minutes before they even attemtped putting in a drip. So off mommy went to get all the admission papers done while ouma and daddy and stayed with you. Only to get upstairs and realise that you were in the room with the nurses putting up the drip and that daddy did not go in with you. I was not impressed. You see, normally mommy would NEVER leave you alone with the nurses, and not because I dont trust them, but because I know what to look for when you are crying and going to stop breathing. In any event I barged into the room just to find you laying on the bed completely relaxed like a little old man with one leg over the other and having a HUGE conversation with the nurses. NO crying whatsoever AND they managed to get the drip in your hand and not your head for a change - how awesome is that . Well for us and for you it is :)

Anyway your doctor ran blood tests and mucous tests and ordered serious physio for the next five days. Jip once again 5 days in hospital. The good news was that all your tests for the RS Virus and others came back negative, the bad news was that it was really a normal common cold that had got you to pnuemonua litterally over night.  I can say that although you werent severely miserable and crying, you wanted nothing but to be in my arms 24/7. Now as little and as light as your are, afer a few hours you are pretty damn heavy. I would eventually get you to sleep and the second I tried to put you down you would scream blue murder, not once, not twice, but EVERY SNGLE TIME !! But as tiring and sometimes as frustrating and draining as it is, I would never change it for the world.

Since then we are home and you have recovered well. I am only hoping that with this really iffy rainy, stormy wet and windy weather that your chest will stay well .... so far so good and holding my thumbs ever so tight ..... okay okay begging God to keep it that way :-)

Mommy is ever so grateful that all is better and on track again.

Love you so so much my little angel pie  

Thursday, October 4, 2012

Happy days

 Good morning my little angel pie :-)

For some reason I am missing you terribly today and a little on the tearful side, not sure why because you have been really well lately, except for a little cramping after feeds, but otherwise we really have no complaints. I mean you are back to sleeping in your cot after a loooong time of sleeping in bed with mommy and kicking me every night, and as little as you are you kick pretty damn hard.

For the last week you have slept really really well ..... either that or mommy is just too pooped and not hearing you at night ...... nah ...... I think I will give you the credit and put it down to you sleeping really well

I know I have said before that you have come out of your shell a little but you have come out some more and are ever so vocal about everything. You smile and play so much more and seem to have so much energy and even your excitement is so much more visible. You have learnt to get your body moving - almost in a jumping motion when you are excited and let out a yelp at the same time. 

You have also seemed to learn how to pose for the camera, not quite sure where you learnt that from ..... oh wait, WHAT am I saying, you could only have learnt that from your sisters. They just looooooove taking photos of themselves posing and pouting ..... teenagers, what can I say

With your sisters on school holiday you are just loving all the attention that they give you, learning to draw, playing on your play gym and reading your book. lots and lots of cuddles for you, and you have even been playing with the cat - who seems to just want to cuddle with you lately as well, AND having a little bit of ice-cream.

The other day mommy decided to stop in at the baby store to see if I could get your nappies there and whilst I was taking my time looking at everything BUT nappies  :-)  daddy was having a gawk around and found a pair of sunglasses that fit you. This kind of thing may seem so trivial and such a silly thing for some people but for us it is a REALLY REALLY big thing.

Now we can actually hang out in the garden a bit and you can open your eyes outside for a change. Your photo sensitivity is so bad that even when the sun is really bright and shining in the house your little eyes go red and you are not able to cope too well.

On another note, for the first time the other day, daddy took you the barber and they shaved all of your hair off. Now you look like a real little boy - lets say ouma was not too impressed but hey, as long as you are comfortable and cool, that is what matters for us. 

 I mean we really dont want a little Mr cranky pants because he is getting too hot and yes ....  it is VERY scary how the weather affects you ..... especially when it is raining and miserable outside, cause then your mood is pretty much the same ............ plain miserable, so much so that the cat even wants to cuddle with you because she thinks you are terribly sick and in the mean time it is just the weather.
Well my little honey bunny thats pretty much all for now. By the grace of God, I wish you .... and us .... many many more "HAPPY DAYS" !!!!

Love you pumpking pie

Wednesday, September 5, 2012

The Niggles

Hello my little Angel.

Wow its been a while since mommy has written to you, I really need to get to this more often !!

The last few weeks have been a little on the tiring side and I say tiring because you have been a little bit ... okay a lot on the niggly side. Last week I rushed you to the doctor cause your breathing was a bit off, but I wasnt told that you had been crying quite a lot - and in that case your airways close up a little and you get that croupy ragged kind of breathing. In any event I took you to the doctor, I wasnt going to take any chances. We didnt get to see your doc so had to settle for seeing his dad, who is not a bad doctor at all - I guess I just like to be in our comfort zone. Fortunately it was "only" a serious case of congestion and post nasal  and NOT a serious case of pneumonia and in your case an ordinary post nasal is serious, so there was no need for a hospital visit, but a need for MORE meds ....urgh !!! So it was back to nebulising you with adrenaline and pulmicort but this time it just didnt seem to work, so two days later back to the doctor and yay we got to see your doc  - Not sure why but you always manage to want to visit him on a Wednesday when he isnt there :-) so we always have to go back again !!!

You werent sounding any better and the congestion was really really terrible, I was pretty convinced that we would be making a trip to the hospital, but you have held yourself well and proved us wrong again. At the moment you are on 12 different medicines per day to your normal 3, and things just werent looking up. Our doctor is kind enough to keep a script at our pharmacy for us in case we feel we ever need an antibiotic and are unable to see him, so daddy and I made the call to use that script and hope and prayed that whatever you have is bacterial and not viral. If it is viral your little body needs to fight it because the antibiotics will not help, BUT we are super excited to say that within 1 and a half days you are so much better - whoop whoop for mom and dad - like grampa will say - me thinks you qualify to be a doctor just from practical experience - hahahahaha.

 I have also been stressing terribly of late because your sisters have been in contact with another little girl who has had measles and you have NOT been immunised against it and I am so afraid that will take its toll on you and lead to the inevitable :( so mommy called the doctor and he has told us to really "pump" you with vitamin A - 10 000 iu to be excact and so far so good. I am really hoping and praying right now that if you havent got it now you will not get it. Please Lord dont let my little boy get it.

Some other exciting news .... It has been a really uphill battle to find other Trisomy families here in South Africa. We know Miks mom, Aunty Tat and Mia's Mom,, Aunty Nadia and thats pretty much that. I genuinley thought that you were the oldest of only 3 surviving babies in South Africa. WELL the other day I found out that there is a young lady in Newcastle with full T18 who is now 27 years old - how awesome is that !!!!!! and finally mammas are coming out in the open that their children, being earthly angels or heavenly angels have T18 - it is soooo awesome and i just have to say that I will be forever grateful and forever bound to Aunty Tat - who has just always been an inspiration to me since the day we first spoke.

So that is all for now my sweet little pumpkin pie - love you forever and a day !!!!!

Lots of Love

Monday, August 20, 2012

Playing catch up

Good morning my precious little pumpkin pie  J

Its been a little while since mommy has written to you ... life has been a little hectic lately. Between work and your sisters dancing and sport  I am not really getting time for much else so I am going to play a little catch up on your blog today.

You are doing great - although you have been a little chesty, nothing really major though. We took you to the doctor about a week ago just to see if all was ok and if your chest was as bad as it really sounded, but the doctor was happy. Yes you are extremely phlegmy but there is no wheezing and it hasnt attached itself to your lungs so there was no need for an antibiotic, just some pulmicort for Nebs and some quarterzone to try and stop the pleghm from producing even more. This has worked really well, but now for the last two days you havent been on the quarterzone and we seem to be back to square one again, so not quite sure what to do. I will call your paed again and find out what to do. Other than that all good.

Your sisters and daddy have been a bit on the sick side ...... okay not a bit, very much on the sick side and I am hoping and praying with all my might that you dont get it, cause I know it will be disastrous - you havent been sick for so long and we are trying to keep it that way

You seem to be getting another tooth (your second one), one of the bigger ones next to your eye tooth and I can see this is causing terrible discomfort, even though you are not miserable, but they way you pull your dummy in and out of your mouth rubbing it against your gums shows it is a little on the uncomfortable side for you. It has also caused you to have a really very runny tummy at times where we need to hydrate you and give you some questran to try and stop it - thank goodness every time it has worked. I suppose the fact that you are tube fed also helps - I dont have to fight with you to get liquids into your little body.

We have also taken you off of solids for a while now, because every time we seem to push with with the solids you seem to get more phlegm and more sickly, so only water and formula for you and to our surprise you have actually gained weight. Although still at a much slower than an average baby, but at a much more rapid rate than when we had you on solids. So a week ago you were weighing a whopping 7.5kg ...... AND you are now fitting into 12 to 18 month clothing .... such a big boy !!!

On another note - we are a little on the excited side, "uncle" Steven sent us a "stencil" to take imprints of your hands and feet  ...... all the way from the UK .... and he is going to have the imprints mounted/engraved into a glass tile - I only sent them to him today, but we cant wait to see it .... it will have so much sentimental value to us - Thanks Steve. PS. we thinking of you and hoping and praying all is clear !!!!

Okay so a little bit on the frustrated side cause I so want to post some pictures but for some unknown reason the image icon has dissapeared and I cant find it any where. Sorry my little angel, I just dont know how to fix it .... maybe one day I will figure it out.

Thats all for now big boy - will blog again soon.

Love you so so much

Monday, July 23, 2012

My favourite sound

Morning my precious little angel.

The last three weeks since your last "incident" things have been good and uneventful (thank goodness). No hospital visits and no doctor visits. I think it is safe to say that we have learnt to manage your chest and lets hope it stays that way ... I mean we are going almost on a 6 month stretch that you havent been in hospital and for us that is a LOOOOOONG time, a very long time.

I was on my way to work this morning and listening to the radio. One of the DJ's asked his listeners what their  favourite sound is and he proceeded to play a recording of his newborn drinking his bottle, and while I was driving I was looking around at all the other cars and I could see how people were thinking and how smiles were spreading across their faces and I thought what is my favourite sound. There are many things and I really didnt have to think that much, but my all time favourite sound is when I wake up in the morning and I can hear your steady breathing. This for me is the most awesome sound ever because I know that God has blessed us and given us another day with you, another day to hear your laughter, your crying. Another day to watch you scratch behind you ear and to pull your ear. Another day to see you smile at your daddy and your sisters. Another day I can bath you and dress you. Another day I can kiss and cuddle you. Another day that you have beat the odds against you :-)

I am imensley proud of you my little pumpking - you amaze me every single day.

Love you to infinity and back

Thursday, June 28, 2012

To know the value of time

Today it is a great privilege and a wondrous miracle that I get to say GOOD MORNING MY PRECIOUS PRECIOUS LITTLE ANGEL !!!

I say this because once again on Friday we were reminded of the value of time, the value of a minute if not seconds and the wonderful miraculous work of our Heavenly Father.

I was at work and daddy was fetching your sisters from school. Daddy phoned me to ask me to phone home and see if everything was okay. He had been trying to phone but couldn’t get through and he knew something wasn’t right. I phoned home and everyone was hysterical. You had a severe and violent seizure and you stopped breathing. Even if oxygen was applied it would not have helped ….. your airways were closed. Your Ouma and Oupa did really well …. they rushed you to your paediatrician, had they taken you to the ER you wouldn’t be here with us today. By the time they got you to the doctor you were completely limp, non responsive and had been without oxygen for 3 -4 minutes.

 Somehow adrenaline kicked in, for a few seconds at least and I managed to stay calm but then my heart dropped straight to the floor and I fell to pieces.

I had to get to you  …..  as fast as humanly possible. Every thought possible was going through my mind. My worst fears were right in front of my face. The thought of not being able to say goodbye, that I couldn’t hold you and  cuddle you and whisper in your ear how much I love you and that as hard as it will be, if it is your time to be embraced by God’s warm and loving arms, we will accept this and one day we will be okay. That I wouldn’t be there when you needed me the most and that you would think that I had abandoned you in your time of need. That mommy wasn’t there to keep you warm and reassure you and comfort you. That I wouldn’t be able to kiss your sweet little lips or smell your hair or feel your little hand grasp my finger or feel you nuzzle into my neck one last time.

Many people cant understand why you were “resuscitated” and I feel the need to let them know. Daddy and I have prayed and asked for guidance and we have agreed (not without discussing with you of course) that should your heart STOP beating we will not try to bring you back – then it is yours and God’s will. But should you stop breathing and your heart IS STILL beating …. we will assist you to open your airways and help you breath as far as we can.
Friday was the closest it has ever been, but your heart was still beating. When we took you for a check up on Saturday, your doctor told us your heart beat was very faint and slow, but nevertheless you still had a heart beat and he honoured our wishes by assisting you to breath.

We don’t know how you bounce back so quickly and come back to us even stronger every time but we are eternally grateful.  Even your doctor told you to at least TRY and act sick with your check up J

People keep asking us how we do it, how do we cope and the answer is YOU JUST DO !!! Besides the love that we have for you, there is no other explanation for it …………… and as I always say we are grateful for the time that we have with you and are able to love you.

Love you precious pumpkin

Thursday, June 21, 2012

A little bit of this and a little bit of that

Hello my gorgeous little pumpkin:

Its been a little while since mommy has written to you. Life continues to be good and as healthy as can be ..... of course with a few little hiccups along the way, but nothing serious. Which surprises us to no end because we were really dreading this winter and you getting sick, but thank the Lord you are as healthy as a T18 baby can be. The one thing that we have learnt is that not giving you ACC200 for two days or so causes your chest to go a bit haywire so we confirmed with the doctor and he is happy that we give it to you on a continous basis. You have also had a few seizures along the way, some bad, some not as bad .... well I suppose they are all bad so maybe its best just to say that you have recovered quicker from some than others. Although I would prefer that you didnt have any at all.

We have had grumpy days, constipated days and runny tummy days and well, lets not forget your tearful days and some very sleepless days. But all in all we definately cant complain.

Now to some people having had all these little "hiccups"  could be major and even annoying things, but for us they are small, well compared to what we have already expreienced in your little life time with us so far.

In the last few weeks you seem to be exploring a little more than normal which is great, but not so great when want to do it in the middle of the night and we are a little sleep deprived, but the nevertheless moments that we cherish. You are more observant of your toys and reach out and grab them and hold on to them more often which is awesome. Although you dont hold on for very long it is a huge achievement and we are always in complete awe when you do it. Now we just have to get you to stop smacking yourself with them. It is quite cute actually cause every time you do it, you close your eyes like its a complete surprise, but we know you are just showing off and saying hey mom look at me :-)

The other day we had a heart stoppintg and ever so proud moment, ok well at least mommy did. I was holding you over my shoulder like I normally do and your left arm was down by your side as it usually is. It always seems to be your prefererd position, but on this specific day you lifted your arm and put it tightly around my neck and gave me a hug.  I got goose bumps and my body just tingled all over. I never wanted it to end, I wanted to sit like that with you forever. It was just the most amazing experience and feeling ever, a feeling I want to feel over and over again and yet know in my heart that it wont always be possible and that you will only do it randomly and worst of all that someday I wont ever be able to have that feeling again. But for now and the rest of my life I will cherish every moment like this cause I know just how special they are.

Your laughter is so much more defined and straight from the belly and ever so spontaneous. We dont have to act like clowns for hours on end just to get a smile, now you just seem to smile and laugh at anything and everything. Just like the other day I was changing you nappy and out of the blue you just started with a great big belly laugh and pulling your knees up to your chest, with such enjoyment. It was a pleasure to experience, a priceless and emotional moment that most people take for granted, a moment that we have learnt could always be the last at any given time.

Another thing that you have learnt to compromise with is normally when I hold you over my shoulder you like to push your chin down into my shoulder and click or snap your jaw. Now I figured out that this must be a measurement of comfort for you cause now you have learnt to put your hands under your chin when you are not being held over my shoulder and click or snap your jaw with your hands. I have tried to limit you from doing this because I was scared you would pull your jaw out or something ...... yes the over protective mom again, but have given up and let you be, if it comforts you then that is what you can do.

You have also learnt to take your dummy out your mouth. Now at this point I have to say that you seem to have become rather dependent or attached to you dummy and every time you take it out, well you put up quite a performance.

So the next step is to teach you to put it back in your mouth instead of waving it up in the air.

We are glad that you have taken to your dummy the way that you have because at least you get the sucking motion that is so necessary for children to develop You dont drink a bottle, in fact you really want nothing to do with a bottle or anything of the sort in your mouth - only your dummy. So at least it provides some sort of stimulation, you have even learned to hold on to it with your one little lonesome tooth :-)

So my angel pie, we continue to pray for stable and good health and precious little smiles and adorable laughter and many more precious moments of proving the medial society wrong !!!!

Love you so so so much sweet pea !!

Monday, May 28, 2012

Dont want to jinx it ......

Good morning my precious precious little bunny.

I just want to start off this morning by telling you that I love you so so much, more than words or expressions could ever say or more than anyone could ever imagine!!!

I really really dont want to jinx it but, we have had a relatively good run with you, only been to the doctor once in two months - normally its about 3 or 4 times in a month - and I am proud to say he is very happy with your progress. Although you dont seem to be putting on any weight, but you arent losing any either - so for now a stable 6.5kg it is

We think part of the reason you are doing so well, is because we decided to stop giving you solids for a while, because every time we push the solids you seem to get sick, so we need to listen to your little body. The scary thing is you are actually thriving just being on formula only, yes we add a litle fibre and malt to help with weight gain, but only been doing this for a week or so .... time will have to tell.

Although you are doing really well and we havent had to go to hospital for a little over three months now ........ woooo hoooo .... Lord please please please let it stay that way ..... the last few weeks definately havent been without its problems. You see two of your sisters have been in hospital ..... what is it with that place that we can seem to get away!! Anyway Tannyth had to have her appendix taken out after collapsing on the hockey field and Brenda-leigh had an infection that was causing her heart to beat irregularly. I know we shouldnt ask questions and we should just accept, but sometimes I wonder how much more God is going to give us, how much more does he feel that our family can deal with. I really feel that I am pretty close to giving up, but yet somehow just keep going.

You have also had two seizures in the last two weeks, which isnt very out of the norm, but they were a little different to normal. They happened really late at night and really early hours of the morning. with both of them your breathing was staggered and it was as though you were gulping for air, but the first one you body was shaking violently  - more so than normal  - but there wasnt any screeching. Afterwards your little body was shivering so much it took a while to "warm you up" - it also lasted about 4 minutes - much much longer than normal and with the second one you little body wasnt quite as stiff as normal but your screeching was so much more "violent". We know its not your meds, cause we checked with the doctor and for your weight you are on the same dosage because your weight has stayed the same. So I guess its something that  we will need to keep an eye on for now. We have also been battling with a little constipation, but not too serious. Some olive oil or pegicol gets it going chop chop.

Anyway my little angel, we continue to cherish each moment, each little smile, each little pull of our hair, each little giggle, each little scream, each little uh uh, each little moment of cheekiness that comes through and each little moment of silence where you will stare intently into my eyes and move your little mouth around as if you are saying mama - a little moment that is ours and ours alone.

Love you angel boy

Tuesday, May 8, 2012

Heavenly birthday

Hiya my precious little monkey.

Today mom is going to be taking this post to wish little Miks a happy heavenly birthday.

Happy Birthday to you, happy birthday to you, happy heavenly birthday dear Miks, happy birthday to you !!!!!!!  ..... okay my singing is not so great :-)

I know you are dancing, singing and rejoicing in heaven today little blue eyed angel.

Remember, although your mommy's heart is aching today, as it does every other day, she is ever so proud of you and misses you immensly as does daddy and your brothers. I wish I could be near mommy to give her a hug and say:

"Miks love for you is never ending, her love is more than all the grains of sand in the desert and  she is watching over you and seeing just how awesome you are and is proud to be your baby girl"

Look down on your family baby girl and see their never ending love for you. Let mommy and daddy and your brothers know of your presence and just how much you love them too.


PS: Have some angel cake for all of us here on earth !!

Thursday, May 3, 2012

Two years old :-)

  Morning my precious angel.

Wow ...... every now and then I sort of have to shake my head to say wake up you are dreaming ..... only to realise that it is real. I cant belive that you are already TWO years old. TWO years that we have been able to love and cuddle and cherish you.

We decided not to have a party this year and just spend some quiet quality time at home. We  had some suprise visitors, your aunty Rene and uncle Lion as well as aunty Sophia, which ended up being a lovely day.

You were in such a relaxed happy mode and I could swear you knew that it was your birthday. Not that it was any more special than any other day that we get to have you with us, but because for you and for us as a T18 family it is a HUGE milestone !!

I think maybe the girls hearts were a bit heart broken that we didnt have a party but in time they will learn to understand just what is important in life and I am not saying a party isnt important, but it is also important to have that quality birthday time with you as well. I remember your first birthday party, you were passed around like a little parcel and mommy and daddy and even the girls really didnt get to have that time with you. NOT that I am not happy about it, I am happy that the rest of our family and friends got to spend it with you too and of course mommy also has to learn to share :-)

So we just really spent the day taking turns to cuddle and cherish you and of course taking lots of photos. I mean we have to show the world that you ARE most definately compatible with life :-) So the day wasnt really special in the sense that we had something really big planned - I mean after all that is all just materialistic. It was a special day cause you are here to celebrate it with us. It was special cause we were able to look into your eyes and say "happy birthday baby boy - I love you", something that most take for granted, but not us.

I guess the day started off pretty emotional for mommy - probably more so because you had been a bit niggly for a few nights and we hadnt had much sleep, but most importantly because my heart was filled with so much love, pride and happiness (still is) - all emotions that seem to get the water works going for me, so I spent a good part of the morning letting my tears of happiness out.

It was pretty much a weekend of celebration as well as emotion as it was also grampa's birthday on 28 April. So we made plans to go and spend the day with him on the Friday. He was so glad to see you and just loved to sing to you and play his guitar and mouth piece and you love listening just as much. I decided that I wasnt going to buy grampa something for his birthday that may not get used or be finished within a day, but to rather give him something that has a sentimental value, and what better than framing photos of our precious little angel so that he can look at you whenever he wants to.

Needless to say I got a reaction from grampa that I never expected in a million years. You see my little angel, grampa and mommy have always seemed to have a bit of an estranged relationship but that has most definately changed since you have been in our lives. Anyway, I have never ever seen grampa shed a tear and when he opened his present and he looked at the photo of you with you smiling and your little eyes shining ever so bright , he couldnt help himself but cry and yes well .... that got us all going, especially mommy !! Another magical moment that I will forever keep close to my heart.

Thank you my angel boy -
love you my little munchkin

Monday, April 30, 2012

Always a smile

Well hello my gorgeous, precious little TWO year old miracle !!!!!

Mommy will tell you all about your birthday a bit later. Today I want the world to see your smile and just how contageous it is. Quite the opposite to what the doctors said two years back .... wouldnt you say?

And these are only some of the pics that we managed to capture. There are so many more that the camera missed. I SOOOOOOO love just seeing your smile.

Monday, April 23, 2012

How quickly time goes by

Good morning my precious angel !!

Today there are so many emotions running through my heart. Almost two years ago we were basically told you will never be, and if you are, you will be severely deformed and not compatible with life.

My heart is ecstatic because "YOU ARE" and YES you have what some people would call deformaties ....... but you are perfect in our eyes. From not living longer than an hour to being two years old in a few days time keeps me in complete and utter awe. My heart is so full of love and light because we have had almost two years more than what we were told.

I am also heartsore today cause  I just wish I could freeze time. Not in a negative way that I dont want you to grow and flourish, but in the way that I will never have to let you go. In a way that when I wake up every morning I know I will be able to see your smile and know you will always be there for the rest of MY life, in a way that I will never out live my son, in a way that you will be able to see me grow old and me see you grow old, in a way that my son will have to bury me and not the other way around :-(

My heart is also celebrating because in a few days time you will be TWO years old - who would have ever thought. From what we were told, we didnt, but we have always believed and had faith and from what we know now, we still believe and have faith!!

Every day you teach us something new and no matter how hard it gets you always try, you always have a smile. You are so persistent even if you dont get it right. When you want to touch my face, there are times that it takes about twenty tries before you get it right, but you never give up. You aim as if you are about to throw and arrow and your arm will move back and forth ...... back and forth and then ...... yes you eventually get it right and the satisfaction on your face is priceless and the melting feeling in my heart is just as priceless. There are times when you get so frustrated but still you never give up. Thank you for teaching us to never give up my darling baby. Thank you for teaching us to believe and have faith. Thank you for teaching us to live, love and appreciate every moment.

Thank you for choosing me and daddy to take care of you. Thank you for allowing us to love you and most of all THANK YOU for loving us and trusting us no matter what.

Love you angel boy

Tuesday, April 17, 2012

Awesome holiday

Hello my gorgeous little angel pie. 

So we are back from our little trip and all went well - thank goodness.

The morning we left we were pretty much all alone, daddy and the girls had already left the day before. We made our way to the airport and I guess mommy was just so nervous about how you would react with the fllight I didnt even think about taking your birth certificate with for proof of identification ..... what a dilemma ..... now I am stressing cause I have to go home and get it and so worried we will miss the flight and if that had to happen, we would miss the entire holiday :-(    .... not sure why but for some reason I mumbled that I only had your medical certificates with me to say it was safe to travel with you, and thank heavens I did, cause the lady behind the counter then quickly asked if I had a medical aid card with your name on it, which I did, so they allowed us to go through ...... at least that was one disaster avoided :-)

So we made our way to departure. Lets just say that getting on a flight with a special needs baby, two really big bags, a pram and hand luggage all on your own is not quite the easiest of things and the worst is,  the people that are supposed to help you just sort of watch you struggle along and dont really do anything. Thank goodness for strangers that are prepared to help !!

Anyway while we were sitting waiting for the plane to take off, I was just a complete bundle of nerves just hoping and praying that we didnt have any difficulties. In the mean time you were as happy as ever, looking at everything and everyone that walked past. I am proud to say that you were absolutely perfect on the flight, no problems whatsoever. In fact I think it probably felt like one big pram ride for you. There was so much turbulence that the plane was a little shaky for most of the flight, but it didnt seem to bother you. You sat quitely on my lap and never moaned once, even the lady behind me commented when we got off the plane that she never even knew there was a baby on board : ).  So we arrived in Durban and still had a two hour drive to get to daddy and the girls.

By the time we got going, you were completely exhausted and
after a feed passed out, but not for long. All of a sudden we seemed to hit a patch where it was extremely hot and humid and you were NOT happy with that because your body cannot regulate temperature you get hot very quickly, so we had a bit of a crying spell for a while but then as if God heard your cries, it cooled down just as suddenly and you settled. You even had some serious conversations with mommy. All I can say is I have never been so relieved to get to a destination before as what I was that day. Knowing that you were safe and sound and that we could get on with our holiday was just such a relief.
Although we didnt get down to the beach all that often with you, we did once or twice. It was just far too windy most of the time, and as is, you battle to open your eyes outside and with the wind it just litterally makes it impossible for you to open your eyes. We tried taking all the precaution that we could and glad to say that we had some good times. I think some of the people probably thought we were crazy having you dressed the way we did, but we were NOT taking any chances of you getting sunburn (even though we had a factor 50 lotion on you), or getting any earache from the wind. The fact that we were so far from your doctor just scared the living day lights out of me.
Needless to say you didnt really like the sand when we put your feet down for the first time, the first thing you did was lift them up as fast as you could, but after a while you were quite happy to sit in the sand and play ...... yes play !!!!

All in all we had an awesome time and everything seemed to agree with you. clearly the air agreed with mommy cause one night I fell asleep and was pretty much completely out of it. Daddy says they were all sitting out side have a good "kuier" and one of uncle Kev's huskey ..... Rain .... came to them and was making noises trying to get their attention, and after a while daddy realised and told everyone to keep quiet, only to hear that you had been crying and mommy didnt hear a thing ........ (felt so bad), but anyway because I wasnt waking up, Rain's instinct was to go and call daddy so he could come and get you ....... I am still amazed.
Thank you Rain, if it were not for you, my angel boy could have possibly stopped breathing from all the crying and I wouldnt have know any different :-(

This trip has really done us all good, we are all so much more relaxed, especially you. I know I have said before that you have come out of your shell, but now you have Really come out of your shell. 
I cant say it really bothered me, but the one thing I have always wanted was for you to make continous eye contact with me, and you dont normally do that, but since we have been away that has changed too, although at times you still look up, you definately make more eye contact with us and keep it for a while. You have also learnt to pull mom's hair and look at me while you are doing it with a little grin on your face ........ oh the pleasures that most people take for granted ...... I long every day for you to do that and yes my baby angel ...... you can pull as hard as you want to and laugh while you are doing it .... its all more than okay with me !!!

Another thing that is a memory I will forever cherish extremely close to my heart ..... whilst sitting on daddy's lap I was cooing you and encouranging you to come to me and all of a sudden you threw you arm up over my shoulder and pushed your body toward me !!!!!!!!! YOU wanted ME !!! It was the most gratifying and emotional moment of my life .... thank you my precious, nothing can beat that feeling, it was just the best ever !!!

Okay so you have been healthy and I pray every day that it will stay that way, but now unfortunately it has been your sister's turn to go to hospital. While she was playing a hockey match the other day, she doubled over in pain and we landed up taking her to the emergency room. The doctors couldnt find anything wrong, but after mommy insisting that she be admitted and the problem found, the following morning they ran tests and did a sonar and finally discovered that it was her appendix which they have now taken out. Like grampa says, we should be well equiped to be nurses by now ..... and I would most definately agree. At least she is home now and things are back to normal again .... sigh .... all just so tiring, but good to be home and have the family back together.

Love you all so so much