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.

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