Happiness is .....

New year, new beginings

Helloooooooooooo my precious precious little angel pie

Christmas has come and gone yet again, except it was a very quiet one, just you, me and daddy. All your sisters were away and they missed you terribly and I think you missed them too. I think even for you the house was just way too quiet.

Before Christmas we managed to spend some time with your uncle Kevin in Durban and still I cannot believe how wonderfully your little body reacts to the Durban air. You always just seem to be so much healthier, you sleep better and just so full of lilfe - not that you arent always full of life - somehow it is just a little different. Our plans for the day would go entirely up to you and what time you decided to wake up and how resilient you would be for the day. Most days you would only wake up between 9 and 10, much to the girls dismay becasue all they wanted to do was get to the beach every morning.  I wasnt complaining becasue for once we werent rushing to get anywhere - it was wonderful.

 So this time at the beach there wasnt as much wind as there was in April and you were atleast able to play in the sand a little and dangle your feet in the water - only if you were sitting on daddy's lap - the second that little bum of yours touched the sand ........ well lets just say you were not happy. The only thing we really had to contend with was the heat and the light, the fact that you cannot regulate your body temperature and have photosensitivity, makes it a little difficult for you. So after about an hour or so on the beach you pretty much have had enough. We cannot complain, at least we are able to build those memories with you and experience these things that most people would consider normal and nothing really special.

Wow I cant believe another year is behind us - how time flies. On the one hand I am not complaining because you just seem to get bigger and better as time goes by and then on the other hand I just want time to stand still so I can have you with me for the time that a child is supposed to be with their parents :-( Anway not time to think about that, now its time to be happy. Its a new year which means a new start, healthy and happy and a time to move forward.

We have got you back onto solids again and so far so good - hold thumbs that it stays that way big boy - Then we have an appointment with an orthopeadic spinal surgeon later this month. NO we are not looking into operating, we are going to go and see the doctor about getting you a little back brace. We are not sure as yet if you will be able to get a back brace, but we are positive and holding thumbs that only good things can from our appointment. Now, I dont know Dr Sneakers but your peadiatrician does and he says that Dr Sneakers is one of those doctors who just prefers not to operate and that he will always look for alternative measures before having to go to the extreme, and when speaking to his receptionist, I told her that I really hope he can help us because you are still so little and have T18 and her response was well the doctor is used to dealing with really little syndrome babies - WOOOOHOOOO this gives mommy so much hope and positivity to know that his patients are small syndrome babies. So thumbs up !!! and you bet ya they are going to stay up !!

In any event, the plan is to get you a brace so that:

We can try to stop you scoliosis from worsening
We can try to strengthen your lower back and tummy muscles
We can teach you to sit by yourself

It is going to be a lot of hard work for both you and us - but hard work we are definately looking forward to. At the end of the day, as long as we know we have done the best for you and explored all  our options and that you stay comfortable and happy - that is what matters most.

Love you my little peanut !!

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

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

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  

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

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
Mommy