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

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

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

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 !!

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

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.

HAPPY 2nd BIRTHDAY MIKS !!!

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

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