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.

Tuesday, March 27, 2012

How much more ?

Hello my angel pie.

Although you are fine now, the last two weeks have just been plain yuck !! Two weeks back mommy got a serious ear infection and burst an ear drum - not fun but the worst part is, is that I had a viral infection which I passed on to you. The Friday night you were a little on the niggly side and you were playing with your ear. Now you always play with your left ear, that is nothing new, BUT when you started playing with the other ear, well I knew. So we took you to the doctor the very next morning and he confirmed that you had an infection. You and I were both put on really strong antibiotics. We managed to catch it at begining stages, so at least it wasnt hospital. You managed quite well and we were satisfied ..... for a week at least. the following Monday you were miserable and congested, so back to the doctor ........  We are beginning to wonder if you just miss him and want to visit :-)  because the moment we get there you are all smiles and talking away as if nothing is wrong ...... hmmmmmm I wonder ..... Okay so it was only nasal and nothing that some really good nose drops wouldnt sort out. Couldnt do antibiotics again, you had just finished a course.

The VERY next day you hit out in a rash which scared the living day lights out of us. You havent been immunised against Measles, Mumps and Rubella and the ones after that. We can only immunise you once you have been healthy for a few weeks and well yeah, that just does not seem to be happening lately - unfortunately your little body just seems to pick up any virus that seems to even think of passing our way :-(  Anyway, daddy rushed you off to the doc while mommy was at work stressing myself out beyond measures, seriously thinking we are going to spend a week or so in the hospital in complete isolation. You picked up the Coxsackie virus, otherwise known as hand, foot and mouth disease. Still trying to figure out how you got it.

For once we were actually happy that you are fed through a tube. Your doctor told us that if you were bottle fed that without a doubt you would have been in hospital because you wouldnt have been able to drink - YAY gtube !!! Never thought I would hear myself say that :-) !!

So doc decided you would be okay at home as long as we keep you hydrated - which in our case is absolutely possible. Now we just had to wait for the virus to work its way out of your system. Either you have a very very very high pain threshold or the virus just wanst painful. We fully expected you to be miserable and not sleep but in fact you were the complete opposite. You slept well and stayed yourself, no miserable bouts, no crying, no nothing. It has taken five days to work out of your system and has litterally worked from your head down to your toes and out of your body !!! really wierd I know.   I think it took more of a toll on your sisters. Because the virus is very contagious, we did not allow them to hold or touch you while you still had it. They really really battled, I dont think they knew what to do with themselves. Tia took it the hardest, she battled to look at you. Every time she did she started crying and didnt even want to come into the room at one stage :-(    but she soon got over it and just wanted to cuddle you. She actually told mommy that when she went to cheerleading she realised that ........... well .......  that it could have been the last time she saw you and didnt want to look at you. What would she have done then :-(  So when she came home, the first thing she did was come and talk to you. My poor angel, so emotional and so loving.

The virus has now worked its way out of your little body and your sisters are able to hold you and play with you. Not quite sure who is more ecstatic, you or them :-)  Okay so now we need to keep you healthy cause we are going away for two weeks and I dont think any of us can wait, we are so excited. This will be our first holiday in 6 years and our VERY FIRST HOLIDAY WITH YOU !!!!!!. This will also be your first time in an airplane. I am sad that daddy and the girls cant be flying with us, but they will be travelling a day before us and will meet us there. Needless to say ..... and I know I shouldnt be ..... but I am really very frightened. I am not sure how you will react to the flight, if you will be ok or not, but when I listen to other trisomy families travels they havent had any problems and then well, yeah - just dead scared of being away from your doctor but I guess he needs a holiday with his family too :-(  Although he is always there for us, sometimes I wish I could just stick him in my pocket and take him out whenever we need him :-)  I know really far fetched but yeah ....... I can dream cant I ? Anyway he has been great and is taking precaution by prescribing a whole lot of meds that we might need - I mean we know well enough by now when you need to be on an antibiotic or nebs, so at least we have that. But I am praying and asking God to keep us all healthy and safe on our travels.

On the plus side, I just cant wait to build more memories with you, I cant wait to see your expression and reaction when your feet touch the beach sand and the sea water and see your uncle who you havent seen in ages. Simple things that most people take for granted. I know we cant keep you in the sun for long, besides the fact that you battle to open your eyes outside, but just those few minutes will be a memory of a life time for us, to see daddy and the girls playing in the sand with you and having fun and knowing that I can just see everyone so care free and worryless (not sure if such a word exists) just for a moment makes my heart happy and puts my mind at ease, that for a little while we can actually be a normal family with no worries whatsoever.

Love you baby boy. Love you more and more each second of the day.

Monday, March 5, 2012

My promise

Good morning my precious angel.

The weekend is behind us yet again - hmmmm time goes by so quickly. You have been well and I cant really complain about anything, although your sleeping patterns have changed a little - but atleast you are still sleeping -  not sure why but I am not complaining.

It was a relatively relaxing weekend and with the girls away we watched a dvd called Courage and all I can say is WOW - what an inspirational message to send to families. The crux of the story is about a man who never really spends time with his family until a tragedy strikes and he loses his daughter and it makes him take time to reflect on his family life and he makes a resolution to his family to be all that he can be.

Today I make a resolution to you, your sisters and daddy. I dont want to be a good enough mommy and wife, I want to be an awesome mommy and wife. I know I dedicate myself to you all, but I also know that there is so much more I can give.

I promise to be the best I can be and to give all I can give.
I promise to be strong for you when times are tough
I promise to give in and allow you to comfort me when I need it.
I promise to listen to your inner most feelings however you express them
I promise to be brave for for you and for me
I promise to keep God in our lives
I promise to try and keep the humour when times are tough
I promise to cry with you when you need me to
I promise to take every opprotunity in guiding you on the right path wherever I can through loving discipline
I promise to support you in every way possible
I promise to love you unconditionally
I promise to always keep you in my heart
I promise to lead by example
I promise to allow you to make your own mistakes and learn from them
I promise to comfort you when you need comforting
I promise to get right back up when I fall down
I promise to pick you up an carry you when you fall down
I promise to let your light shine through
I promise to advocate for you in everything that you are and in everything that you do

I know there will be times that I will fall down - but I promise to keep going for all eternity.

Love you sweet pea !!