Chromosome 18 (Distal 18q-) - PART ONE

As by now, if you have been reading my previous posts, you will understand a little bit about chromosomes. If not, heres just a short summary of what we need to know for this post.

1. Chromosomes are named by numbers. Starting from No. 1 to No. 23
2. There are three parts to a chromosome. The 'p arm'/ 'short arm', the 'q arm'/ 'long arm' and the centromere which kind of acts like a body part holding the arms together. 
3. Each chromosome from starting from the centromere has a something called a 'g-band' that is identified by a given number. The smallest number starting with the g-band closest to the centromere.

I don't remember much from the day that the geneticist invited us into his office to break the news to us about Mango's chromosomes disorder, just very brief flashbacks of the 2 hours and 30 minutes we spent in that office with him, while we tried to make sense of it all. We still walked out not knowing what to think. 

He started off by explaining chromosomes (previous post), then the numbers the order of the chromosome. Then he explained to us what balanced and unbalanced chromosomes are (previous post) and how common it is for people to have a balanced translocation in their chromosomes and never know about it their whole life because it never affected them in anyway. He then told us that there was a deletion in Mango's 18th chromosome and a duplication in his 14th chromosome.

In Mango's 18th chromosome, the deletion is closer toward the end of the chromosome which is why it is named 'distal' 18q-. If the deletion was closer to the centromere (the body) it would be called 'proximal'. 

A child with more than an distal 18q deletion (unbalanced translocation) can face different type of issues. Some could be 18q related and others could be symptoms from the other chromosome involved. 

Here, I will only be mentioning Mango's affects from the 18 chromosome and not all the symptoms related to distal 18q deletion. 

Just a note before you keep reading.
Chromosome abnormalities / disorders all have very similar symptoms.

Global Developmental Delay:
A diagnosis of global developmental delay is given when a child is slow in progression with things such as growth, weight gain, milestone reaching (head lifting, rolling, etc.), social interaction (e.g. making eye contact) and many other things. Keeping in mind that the word 'global' covers a whole range of things. 
Two children can both be diagnosed with global developmental delay but be delayed in  totally different things. 

Mango has sever development delay. Over the past two years, our paediatricians have never been able to tell us where on the charts of development our Mango is. The excuses given are always that they can't determine because we don't exactly know how much he sees or hears or understands. So basically they don't know. All that they know is that he is extremely delayed.

As a mother however, I can safely put him around the 4 - 6 month age. He rolls, laughs, babble a little and all these small things that I try not to miss during the day. Small progress is better than no progress.  

Vision and Hearing:
Vision and hearing problems are a common symptom to have with 18q-. The eyes may be misaligned which is called (strabismus) or move involuntarily (nystagmus) or a change in the optic nerve (the nerve that carries signals from the eye to the brain). 

Some individuals have hearing loss because their ear canals are narrow or end before they reach the ear drum. Cleft palates may also contribute to hearing loss. Other people have changes in the nerve that moves sound from the inner ear to the brain. Ear infections are also common.

A few weeks ago after Plum was born, Mango went under anaesthesia to have a hearing test. It was determined later on after the test that he has a mild to moderate hearing loss. This means that he would need hearing aids because he can't hear the softer sounds that we make in a sentence such as 'sh', 'ch' or 'th'. 

This was good news because somehow Pappa Bear and I were expecting him to have a severe hearing loss. Funny how the smaller things in life are the things that make us happy the most.


Heart:
Heart defect's are common with children who have any type of chromosomal abnormality. The may have a hole in their heart, changes in the heart valves as well as the major blood vessels that connect to the heart. 
As babies, Doctor's usually have an ultrasound of the heart done to look for any defects.

Mango currently has a heart murmur. This means that the valve that connects his lungs and his heart is a little bit narrow causing his heart to work a little bit harder than it should. This is not a big concern. His heart is coping very well!

Orthopaedic:
Foot abnormalities are actually quite common. Either from clubfoot or vertical talus (rocker bottom) feet. They may also have bow-leggedness also known as genu varum.

They may also develop scoliosos which is a curve in the spine. All of these problems can effect the way a person walked or stands.
Most of the time, these defects can be helped with splints, surgery, therapy. And lot and lots of hope and prayers!

Mango was born with vatical talus (rocker bottom feet). This is wear the feet turn outwards. It was quite severe and when the orthopaedic surgeon looked at Mango's feet, he told us that  we could try  physiotherapy (lots of stretching) and try casting but in the end we would need to operate to release the muscle. Months later and weeks before the appointment that we were going to meet with the surgeon to make a date if we needed for the surgery,  I started to take Mango to a chiropractor. I can't tell you if this worked or not but it seem to be the only thing that we did differently in our lives. We went back to the doctor, had x-rays done and we were told that his feet looked like they had never been rocker bottom in the first place. His ankle bones were a bit higher than usual but all was good. Our smiles and expressions of happiness couldn't have even live up to the joy that we were actually feeling at that moment. 

Gastriontestinal changes:
Babies and children may suffer from reflux. This means that the barrier between the stomach and the oesophagus is still immature and cannot keep the acid/food from the stomach down, which brings the food back up. This can cause pain, being unsettled and vomiting and sometimes projectile vomits. It is also said that the feeling of reflux is like heart burn. (My poor Mango!)

Hernia are also common. A hernia is when some of the intestine push through the abdominal muscle. This can be corrected through surgery.

Mango suffered reflux since the day he was born. With all the feeding and weight problems that we were facing even a little bit of vomit was a big loss. Mango's projectile vomits would reach the other side of the wall and after every projectile vomit, he would go limp from exhaustion. We kept him upright most of the time and had a pillow underneath his cot mattress so he could be a little elevated while sleeping.

Mango also had an inguinal hernia and a belly button hernia. His inguinal hernia was fixed through surgery and his bully button fixed itself. 

To be continued....

NOTE: The information on this blog is just something I have learnt in my time as a mother of a child with a genetic disorder. I am not a qualified doctor or therapist, etc and do not claim that I have the knowledge to be. The information is merely for my family members, close friends and other parents with similar issues looking for other families and their experiences.

2015

Happy New Year!!! 

Who's ready for a new year? I know, I am. 

As we start off the new year with 6 days of fever and a trip to the hospital, I take this as a sign that alot of good will happen in the near future. I pray for many good things that I never saw in 2014. I hope for great achievements. But most of all, I hope for more easy days for my little boys. Days that are filled with having days off from appointments and getting to spend some time with them.

They're growing up so fast in front of my eyes. Some days it feels like a tape recorder playing on fast-forward and before I know it, I'm tucking them into their beds and kissing them goodnight. In 6 months Mango will be 3. THREE! That's incredible. I have been a mother for 3 years. 
Plum on the other hand has been on the run. Cruising along and crawling so fast he trips on his chubby face. He hasn't stop talking from the moment he said 'Mama'. I love hearing his sweet little voice, telling me stories of his oh-so-interesting life and next month, he will be 1. One year, since a gave birth to Plum, yet the birth is still fresh in my mind. I remember him in my arms and his cry that nearly made everybody's ears fall off. I can still remember, just like it was yesterday. 

So, Im glad that 2014 is over. It brought many great things to us as a family but we are ready to move on! 

I hope this year brings many good things your way. Thanks for reading. =)

Chromosome 18 (Distal 18q-) - PART TWO

Please read "Chromosome 18 (Distal 18q-) - PART ONE" before reading this post if you haven't already done so....

Facial Features:
Facial features do not affect a person's health or development. People with chromosomal anomalies may look a little different from their family members and people with similar chromosomal anomalies may also look very similar to each other.
People with chromosome 18q- may look like they have a flat/squashed face. The space between their eyes might be a bit wide. They may have an extra fold of skin covering the corner of their eye. Their ears might be lower and look a little bit different from an 'average' persons ear. 
Just because someone has an 18q- deletion and they may present all these facial features, it is important to remember that they may also look very much alike to family members.

When Mango was born, I'm pretty sure what alerted the doctors in the beginning were his facial features. Thus, the beginning of our roller coaster ride. 
His faced looked very round and flat. His eyes were set wider apart than what I had seen on 'typical' babies and his ears were low. I noticed this because his ears were not in-line with his eyes. They were lower. 
We had originally thought that he looked very much like his dad. I think Papa Bear and I both felt in our hearts that something was a little bit off but we just couldn't put our fingers on it. Until ofcourse the geneticist came to see us in our hospital room. Even he didn't think anything was wrong but still a doubtful feeling lingered in the air urging us to look deeper. So we did. Thank God. 

Immunology:
It isn't that common to have low levels of IgA but some people with distal 18q- may have this. IgA is a protein that helps fight off infections. People who have a low level os IgA are more likely to get infections and colds. This can be managed by treating the infection, allergy or asthma early.

It was only recently that I started to wonder if Mango had an immune problem. He was always getting sick and if he is near someone who is even the slightest sick, he usually gets a worse case and it stays with him for a good few weeks to month. The blood test result that we had done, came back normal. So I'm still floating around in the air wondering what I should do now. There has to be an explanation for him getting sick all the time.

Lifespan:
When someone is diagnosed with 18q-, the family's first question is often 'What does this mean for my child's lifespan?". Speaking generally if the person is in good health, there is no reason that they shouldn't live till adulthood. 


NOTE: The information on this blog is just something I have learnt in my time as a mother of a child with a genetic disorder. I am not a qualified doctor or therapist, etc and do not claim that I have the knowledge to be. The information is merely for my family members, close friends and other parents with similar issues looking for other families and their experiences.

Balanced and UNbalanced translocations in chromsomes

Balanced translocations in our chromosomes apparently are actually quite common. Not everybody has them but then again, alot of people do have them and they just don't know about it because it hasn't affected them.

A balance translocation is when 2 pairs of chromosomes are involved. When we look at the two chromosomes in a balanced translocation we see that all parts of the chromosomes are there. No part of it is missing neither added. Two things can happen in a balanced translocation. Such as:

What usually happens is that a piece of one chromosome is swapped with the other chromosome.

Or one part of the chromosome is attached to another part of the chromosome.

Either way, a person with a balanced translocation usually is never affected. What affects an individual with a chromosome disorder is that there is an imbalance. It's never any good to have too much of something or to little of something. It's like a scale. The scale always has to be even.

image: genetics home reference

NOTE: The information on this blog is just something I have learnt in my time as a mother of a child with a genetic disorder. I am not a qualified doctor or therapist, etc and do not claim that I have the knowledge to be. The information is merely for my family members, close friends and other parents with similar issues looking for other families and their experiences.

Moment of realisation

As the year 2014 sets in and my growing 34 week pregnancy belly continues to grow, the reality of how another beautiful soul will soon join our family and turn our world upside down (for the better ofcourse). Something like we never expected before. Because as much as I would like to admit that I am always prepared for everything, it somehow always turns out that Im not.

I realised this morning when I was feeding Mango a bottle of milk. His eyes were closed, half asleep but just awake enough to drink down some milk, that this. This moment. This quiet peaceful one-on-one moment that we had every morning for the past 19 months will soon be gone. It wouldn't be Mama Bear and Mango anymore. There would be three of us or four if you want to include Papa Bear (except I'm sure he wont mind because he would rather me do the morning feeds). My sweet little baby, who kinda actually still is a baby. It was a bitter-sweet moment. I need to cherish every moment that I have with him in the last few weeks. Am I wrong by doing this? Will I spoil him rotten and when his little brother comes along he will feel that i am giving him less time? I want to cry in agony and smile at the same time. I don't know how to react.

I hope one day that my Mango will have the ability to understand the love I have for him. I hope one day he will grow into a man of his own and know that everyday that passes/passed till my very last breath I loved him more than the moment before...

Mango's

Today my darling baby Mango ate a mango. Yes, like a round very sweet yellow mango. A milestone that hit me so hard I didn't even see it coming. I put a nice decent square piece of it in his mouth and he chewed it till it was all mush and then swallowed. He swallowed that piece of mango without choking and dying on me.

So today, I am an extremely proud Mama Bear and I use the word extremely because I am proud of him everyday but today I just happen to be extra proud. We pretty much thought that he would be on purees all his life and the rest of my days on this earth. Puree morning, afternoon and night. BUT today showed us that it won't always probably be like that. Today, I hope, is the day that we can start thicker foods that include more mouth movements.

Today is a good day. A milestone that not many parents take for granted because it is just what is expected and unfortunately have not seen the beauty in having the ability to have mouth control.

Outside there is a bright yellow sun, shining down on our green luscious grass. A bright yellow sun just like my little asian Mango who sits in his supported chair eating square pieces of Mango from my hand.

=)  

Chromsomes

I would say I know quite a bit about chromosomes but if you asked me to explain everything I know to you, I wouldn't know what to say. I would have a mind-blank. However, I know that I have asked a few family member and few friends to join me on this journey and follow us, as I slowly but surely update a little bit about our lives when ever I get the chance. So here I go... Im going to try and explain chromosomes in the most basic and simple form as I can before I explain Mango's chromosome anomaly (abnormality).

In every human body we have cells. Cells, are what make up our body. If we were to take one cell from our body and place it under a microscope, zoom in really close we would see that so much is happening in just ONE tiny cell. In each cell we have chromosomes. In each chromosomes we have genes. These genes tell our body what to do and how to do things. (So when our child either has a duplication or a deletion in the chromosome, the doctor's tell us how much of it is missing and added. When they tell us this - they are actually telling us which part of the gene in the chromosome that is missing). 

Every person has 23 pairs of chromosomes. One copy of each chromosome from the mother and one from the father.
Mother - In a mother's 'egg' she has one copy of chromosome 1 to chromosome 22, and the 23rd chromosome being the sex chromosome, which would be an 'x' chromosome. 
Father - In a father's 'sperm' there is also only one copy of chromosome 1 to chromosome 22, and the 23rd chromosome being the sex chromosome. The sex chromosome from the father can either be an 'x'(female) or 'y'(male) chromosome. In saying this, the sex of the baby is determined from the father.

This is what two pairs of chromosomes look like (in a cartoon kinda way): 

Example

Asking yourself what your looking at? I asked myself the same thing... 

Every copy of a chromosome has one short arm (p arm), a centromere and  one long arm (q arm). This means every pair of chromosomes have two short arms (p arm) and two long arms(q arm).

So, you see the dark shade of purple labeled 'P'? This is what scientist and everyone else call's the 'P arm' OR 'the short arm'. The lighter shade of purpler labeled 'q'  is either called the 'q arm' OR 'the long arm'. The yellow circle in the middle is called a 'centromere' which acts like the body part of the chromosomes holding the two arms (p arm and q arm) together. The centromere is the centre part of the chromosome but this doesn't mean it is always the centre of the chromosome when speaking about the length of it. Then there is an outline, outlining the entire chromosome which is called a 'telomere' and this keeps the entire chromosome together. 

The genes inside the chromosome are identified by using a special type of dye that defines their differences. Each part of the chromosome will be affected differently when the dye comes into contact with them. By this happening it identifies certain 'G-bands' within the chromosome which are labeled by numbers. The smallest number starting from the centromere to the largest number ending at the end of the arm furthest from the centromere. 

Something like this:

Chromo 18.org

I'm pretty sure I haven't covered all of the facts about chromosomes but I think it's most of the things that you need to know about Mango's chromosome anomaly.

Fact: In saying all that I have said. I would like to add one last thing to this short post. I found particularly interesting even though it meant nothing. Each chromosome is a certain size. The largest of the chromosome being chromosome no.1 to the smallest chromosome being chromosome no.22. 

Thanks,
xx


NOTE: The information on this blog is just something I have learnt in my time as a mother of a child with a genetic disorder. I am not a qualified doctor or therapist, etc and do not claim that I have the knowledge to be. The information is merely for my family members, close friends and other parents with similar issues looking for other families and their experiences.

What car now?

So on our journey to become a family of four.. now still a family of 2 and half + ofcourse the one meatball that is in my belly rolling around. We felt the need to look for a new car. What car? One with a big boot.

See the problem is, we have a pram (a VERY. BIG. BEAUTIFUL. BLACK. pram) that can just fit in our boot. (We have a hatchback by the way). Which means no room for shopping or another seat. We also have coming our way, very soon, a stroller. A specialised stroller to fit Mango's needs. Things like head support, back support, leg support and all the other types of support you need when your 14 month old cant even roll around yet. So yeah. What I thought was a 15kg stroller turned out to be a 20kg stroller. My tail bone and back muscles are already aching just as the thought races through my mind. Our current pram is about 11 - 12 kg according to size, folds quite compact. I think. hehehe

So the conclusion was that if we are going to have two babies in a stroller, there is absolutely no way that it will fit in our car unless its on the roof (and that is not an option so don't even start to think why I can't do it myself).

It kinda sad though... you know. It was my first car... well one that I called my own that actually belonged to my husband which I claimed as my own.. uuummm no judging.

This car has been through it all with us.

Speaking of double prams. We need to start looking for a double pram that we can customise one of the seats. The stress that has come along with it, is just about as much stress as wondering if buying a new car is really worth it or not.

So I think an SUV is an option now. An SUV with a BIG boot space. 

I think it's time for me to get off the laptop. I can feel the little meatball kicking at the laptop. Probably a sign that I should be eating or something....

This is me.. the next 10 minutes...

Number 2

Yep - thats right. We're pregnant again! We are finally here now, Officially calling it a pregnancy and not a 'if this is a pregnancy'. YAY!! Three cheers to us!! Mango is going to be a big brother! 

When we first found out, it was quite weird. Me and hubby had already discussed that we were going to do testing to check out in this bub have a chromosome abnormality or not. So, when we did find out - We knew what direction to go in.

At 7 weeks we were booked in for an ultrasound to determine how far along in the pregnancy I was, so we could book a date for a CVS (Chorionic Villus Sampling). In English - It means to take a piece of the placenta, test it and culture it so all the chromosomes can grow and test that again. Don't worry. you don't need to feel stupid. You should have seen the look on my face when the genetics councillor said CVS. I didn't know which question to ask first. What is a CVS? Who is a CVS? Let's not get started on what a fool I made myself out to be.
At 13 weeks, our CVS was performed. I had done a tiny bit of research about what a CVS was and it seemed like a very basic procedure. All the 'experiences' I had read were very good ones saying that it didn't really hurt and that they went back to normal routine within a few days. LIIIIIEEEESSS!!!!
ALL LIIIEESSS I TELL YOU!!

I didn't mean to be that dramatic.

It was a painful procedure. I have to admit that. The needle sticking inside my belly and pushing and pulling to suck up a bit of placenta. Gross and painful. I remember the Doctor telling me to try and not tense. How do I NOT tense my body when a needle is stuck in a belly and keeps poking away at my placenta. Please tell me. Thats right. You can't. You just stay as still as you can and hope that you survive the next few minutes without wrenching that needles out yourself. The End.

The waiting period was definitely like waiting a thousand years. We waited and we waited. Every time a private number would call, I practically screamed hello as I picked up the phone. Probably, wasn't even fast enough picking up the phone and Im pretty sure most of what they heard was the end of hello 'OO O O O oo' .
When 2 weeks and 1 day finally arrived. I couldn't wait any longer and called our geneticist. Receptionist told us that results weren't in. The sound of my despair probably made her feel bad so she told me she would get the geneticist to call the lab and call me by the afternoon.

Afternoon came and I received a call from our geneticist. For some reason My heart dropped as I picked up the phone call. 'GOOD NEWS' she announced. I don't know why I was thrilled by this point but all I could say was 'which part of it is good news?'. Im very pessimistic aren't I. I think I see that now. But all of it was good news and I didn't know how to feel. I still don't. We are very excited to have a new edition to the family. Giving Mango a sibling will also hopefully help him in his development. No longer a new couple with a baby. Somehow 4 feels like a family.


*few tears of joy*

Thank you for sharing this happy time with us.

Please keep us in your prayers!

Dr A - prediction for the future

Aaaahhhh... Its been a while. Me and you. Together. You know... sitting here infront of our screens sharing this moment...

Eeeeerrrrmmmmm....

Well, we saw Dr A this afternoon (Dr A = Paediatrician). Booking an appointment to see her is like trying to book for the president. We waited three months. Not because we wanted to but because she was booked out. Why? Because she is AWESOME! Like my kid. His awesome. You know that.

We sat in that room for an hour talking about Mango. While he sat there trying to join in the conversation with us.

Mango: Excuse me. I know your speaking about me. Don't face my pram to the wall! I can't see!
Well, I assume that was what he was trying to tell us with all his babbling and screeches.

What I thought had been very mild spasms Mango has been having, turned out that it might actually be seizures. Damn. All I know about seizures are that they could fry your brain. Sorry, no nicer way to put it. Fry. Fry like frying something on a fry pan till its burnt. Damn again. Which if we can really confirm they are ACTUAL seizures then that would explain many things such as his development. Oops. Thats one things BUT its a big thing. ONE. BIG. thing. Booked for an EEG. You know the most stupid thing about an EEG? An EEG is supposed to pick up seizures and high brain activity. The only way they can detect that is if this poor person has a seizure during the scan. WTH? Seriously? What are the chances. Most the families I have met who have children with epilepsy tell me that this scan is pretty much useless. Can I say damn again? Damn.  Oh boy... This isn't even the beginning.

Dr A tried to do a small assessment on him based on her own knowledge and her experience with other children she has worked with during her 15 years as a paediatric doctor.
Her overall conclusion was that Mango is a happy and healthy boy. He will learn to communicate in a way that he finds best for him, in his own way. He will probably never have the chance to go to a 'normal' school or be 'normal'. He probably may never talk or walk but we can only hope that he will some day. He will always remain the little boy he is today. Never being able to be independent in any kind of way. He has medical issues and we can definitely try to get them all under control. *sighs* - all I remember was that voice inside of me screaming louder than Dr A was talking. I wasn't shocked. I was hurt. It just doesn't change. The hurt doesn't change. it always hurts the same and as bad as it did the first time. I slowly started to tear up, so I turned my face away from Dr A to take a look at Mango who was staring into space. I just wanted her to stop. Stop talking. I know reality and I accept it. I just don't want to hear it.. but she kept going. She said - I do believe that your journey will be a very difficult one and there will be many obstacles along the way. I know how hard it is to remember and know but as much as it will be a very hard journey, it will also be a very rewarding one too. As his doctor too, to him accomplish new things will be rewarding for me because we will be seeing each other for a very long time (aka for the rest of his life). - Don't you get it. I don't want to see you for the rest of Mango's life. I never want to see you again! -  We will continue with the therapies and start with speech, - as if we dont have enough of therapies to even make time for more. - We will get to know each other other better and work through things as the years pass.  -Far out. I think this is the start of a bitter sweet relationship. - 

We walked out of room in silence. Walking to the car was silence. It felt like the silence was making us all deaf and this one time, we would let the silence make us deaf so we couldn't hear our own thoughts...

Parents

Being a parent of a special needs child is truly something I would call an emotional roller coaster. You think nothing can get worse but somehow it does. You feel as though your getting your feet on the ground again and somewhere along the road you tripped and fell on your face realising that your not quite there yet. You tell yourself and deep down in your heart you know that one day, you WILL get there but damn it - someone please tell me WHEN?!

We, who are so blessed to have someone in our life that might have a disability - understand what it means to be put to the test of what our unconditional love means. We wake up every morning ready to start a new day. Ready to fight for our children's challenging abilities. Whether its the simple things that we are trying to succeed or the more difficult things that us 'typical' people carry out as nothing. We NEVER prepare ourselves for what the next day has in store for us. We don't bother because we don't know what it holds. Today is already too much.

I start to think of all the people that I have crossed paths with during my life as a mother of a special needs child and I being to realise that there is a pattern of ignorance when the word 'special needs' is added to the conversation. Early on after Mango's diagnosis, I had to make the decision on how I would explain to people who had no experience of caring for someone with special needs. As much as I feel like throwing my arms and legs in the air like a child throwing a tantrum, I chose to educate people about children with additional needs. Ofcourse, because I love the fact that I put the extra stress on myself but I do it anyway. If not for myself and my sanity but for Mango. All people see from special needs or disability is hard, limited, worthless, handicap but noone ever stops to look at my child to only see that inside those loveable eyes there is a warrior. A strong soul that refuses to stop trying.

So heres the thing... When me and husband found out we were expecting a new addition to our family - it didn't start off by going to centrelink to fill in form and accidentally tick the box 'health problems'. All we knew was that we wanted him in our arms as soon as possible and not in my belly. When we were told of Mango's diagnosis, I wont deny the fact that we were both shocked and scared but it didn't mean we wanted to turn back time. We still wanted him. We still loved him the same way when we found out he was on his way. The only thing that was different was the way we would lead our lives. We now knew that he had to fight everyday for the simple things. Seriously fight... We had over 3 months intensive therapy to open up his thumbs. His thumbs!

We spend everyday in what I like to call 'play therapy'. For the days that we aren't spending in  a hospital waiting room, we play. We play opening our fingers, we play chewing, we play sticking our tongue out, we play standing with our whole foot on the ground, we play with turning our heads from side to side, we sing and sign in AUSLAN because unfortunately for my child, these simple things feel like climbing Mount Everest. These simple and natural human abilities have been a battle for him.

Don't get me wrong though, I have no problem with this. Except today, I feel a bit cranky. Please don't be offended with what I say here. I truly do not mean to be rude in any way and I am very sorry if you do.

I truly believe that parents with typical growing children, who have no experience with what special needs is like dont really understand that real meaning of appreciation and I understand that, they probably never will. That is so fine with me because I understand that you can't really appreciate something until you lose it. OR maybe I've got it all wrong here, maybe what I'm saying is that people need to think before they speak. I can usually suck it up when I hear a parent brag about how advance or bright their child is and that's great! There is no problem with having pride in your child for accomplishing something early or even accomplishing something but please don't rub it in the face of a mother who's child is nearly one and can't even lift his head properly. Once - twice - three times and thats enough. Would you in your right mind complain about how your child is driving you insane if the person you were talking to had recently lost a child? No. Daaaahh...

I'm sure many parents know exactly what I am talking about. So please be considerate. We want to celebrate with you, your children's accomplishments but you don't need to keep rubbing it in our face. And those who say things like 'I wish he would just stop walking! He walks to much and touches everything'. Please I know what your trying to say is 'He is very active and sometimes its a bit overwhelming', so please say it as it is and DO NOT say that you wish your child would stop walking! You do not wish that because I pray that god forbid that your child stop walking one day, you will be wishing that even though you never meant what you said at the time - you definitely will be wishing that those words didn't come out of your mouth the way they did.

It truly hurts to the core to see the look in your child face and see deep in their eyes that they want to play with the children but not physically have the ability to do so. It crushes your heart to see your baby not developing and see the kids around him who were born after him develop into strong able toddlers.

OMG. I just realised that I haven't stopping typing. If you haven't got bored by now. Thank you dearly for reading.
xxx

11.30pm

Hi people. So here I am awake at 11.30 at night. I had actually fallen asleep and I was coughing so much, I woke myself up. Yes, I have a cold. Unbelievable. I've got an Orthopaedic appointment tomorrow at 9am. Great.....

You know whats funny though... I'm sick and have been sick for around 4 weeks now. First week I had the fever  second week I had lost my voice, third week I had a bad cough, the forth week I have a flu and to top it all off I'm pretty sure I jinxed myself when I told the doctor 'I was glad the cough is over' and it came right on back without any hesitation. I have a wonderfully crap immune system right now. 

I have been packing it with vitamin D, 3000mg of vitamin C, probiotics, prenatal vitamins, cold and flu tables - need I say more?... 

So while I have tissue stuffed up my nose and a dry cough that I'm praying Mango or my husband doesn't get... I'll still be bobbing around like a loser wondering what I should write next. 

All the best! (I need it more than anyone right now, don't I)

I understand his misery....

Busy =___+

This month will be busy one for Mango and I. It will be busy, busy, busy and busy. Wait... Did I mention that it was going to be busy? We have someone to visit us from the Institute of deaf and blind children and we have appointments for the dietitian, social worker, orthopaedic surgeon, OT, paediatrician, 3 early intervention programs to visit or meet them to see if we are eligible, more of OT, an age assessment and last but not least an MRI to end the month.

Im pumping with adrenaline! Not... =__+

What I thought I knew

Among conversations I always somehow get myself involved in is parenting. I would be in conversations like 'What kind of company will you put your child in?', 'Will you home school, private school or public school?', 'what type of sport will you teach your child?'.

Before Mango was born I knew exactly what type of mother I was going to be. I didn't know where my children were going to end up but I certainly knew what lessons I wanted to teach them and how I would teach them. I had heard (to my limited knowledge) everything I thought I needed to know about parenting and how the game works. So, by the time I was pregnant with mango I already knew how things were going to play out and how I would deal with EVERYTHING and anything. I had all the lists numbered down in my USB that I call Brain.  

Typical child

Teaching the word 'no' - check

Think before you speak - check

How to open mouth - check

How to chew - check

Dealing with tantrums - check

Dealing with bad habits - check

Being kind - check

To be loving - check

To be useful - check

How to help/increase vocab - check

How to speak - check

How to crawl - check

How to share - check

To look at someone when they are talking to you - check

To sit quietly - check

and well.... the list goes on. 

Except as you know now that this is not the way things played out. When mango was born all I had to throw the entire USB out the window and start fresh with what pretty much looked like this.

To teach Mango:

1. Teach Mango how to look at Mama and/or follow Mama from side to side - 6 months later.... check! YAY!!

DOING THE HAPPY DANCE

2. Teach him how to open his thumbs - 9 months on.... still getting there BUT when he does, I'll be doing the chicken dance. (no idea why) 

It suddenly isn't about what school I would put him in. It wasn't about what type of atmosphere I wanted him to be involved in (ofcourse I would put him in a good environment but that wasn't/isn't important right now, that time would come just not right now), it wasn't about the type of sport I pictured him playing. It was about would be ever be ABLE to go to school? Would he be able to see? Can he hear? Can he use his limbs? Wait. Hold on. Does he even know he has limbs? Will he one day be like what I had pictured? The worst of all questions I think about that every parents with special needs thinks even if they don't want to is 'How long will my baby live for..' 

I have a son with special needs. I do. He needs me. 24 hours a day 7 days a week right now and maybe for the rest of his life. It doesn't matter. As long as my heart beats I will look after him with what ever I have left. 

I have come to that stage where I can speak out and not feel that lump in my throat that my beautiful son, who is a miracle that he is even with us today is special needs. He is wonderful. He makes my world spin. He makes my day. To you he might just be another boy but to me - he is MY boy. My Mango.

Rabbit teeth

Mango has been teething this past week. His front two rabbit teeth are ripping out of his gums. He is also grinding. Everytime he grinds his teeth together its like someone is scratching their nails against a blackboard. That ear-piercing screech that makes your ears ache and fingers tingle.

You see, theres is a different between knowing (understanding) and knowing (from experience). They are both knowing, except one is limited and one is not. This week I went from knowing the cries of parents of teething children to KNOWING what those cries meant and where they came from. I fed Mango pureed sweet potato and he gripped the spoon with his teeth and wouldn't let me have the spoon back. I was pretty convinced that the half-of-the-spoon that was in his mouth was going to end up in the in a little plastic bag held by a surgeon working in the emergency department of a hospital looking at me in disbelief that he had just taken a half eaten spoon out of my son. Yes, I saw that all happen infront of me before I put my finger in his mouth and yank the spoon out before my finger was also going to be dinner. 

Mango is 9 months. His teeth are here and I happily say that this is probably the only milestone that he has reached on time. Why the teeth? WHY?! Every parent I have spoken to tells me how dreadful the teeth are and I had to get the teeth on time. Eeeehhh. I'll take it anyways. It's better than nothing. 

If I found Mango doing this..... I would not be surprised....