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.

He is Perfect

Perfect. 


Or

Perfection.


What does it mean? What is perfect? What is it that you see before the word perfection leaves your mouth? What makes you believe that something is perfect? 

I don't even know how to begin to start to explain this lump in my throat. This throb in my heart that makes me feel as if I'm about to explode into a million and one pieces. I want to curl up with my children and protect them from everyone that could hurt them. 
Right now. This very moment, I would trade anything for this feeling to go. 

How do we as parents of such fragile children protect them from people. Protect them from the world that threatens to take more away everyday. How do we protect our children who have special-need siblings that they have not come into a life of hardship, but into a life full of life and appreciation without exposing them to ignorant people that crush their views and make them question otherwise. 

Since Mango got his NG tube, I've had more and more people come to me and ask what is wrong with him. Which doesn't bother me as much if they look like they really care. Some people just stop and stare until we are out of view. Some have the nerve to to blame me, as if I made him that way. Some openly quote that he isn't perfect. All this I can usually take in with a smile and kindly explain to them that Mango has chromosome abnormality and that this is just one of our little obstacles that we need to face but he is otherwise as healthy as he can be. 

Except today. Today. I can't seem to stand and smile while you allow the ignorant words flow out of your mouth and cut deep into my heart, while I nod and smile. Today, I will not justify their words to protect my heart. Because today, my heart is giving in to all the hurt and pain. 


Dear person that stop me in my tracks to ask about my Mango. You didn't just stop to ask about Mango's NG. You didn't just ask about why he is the way he is. You didn't just tell me that my baby wasn't perfect. You didn't just ask me what I did to him to turn out this way. You even dared to say that you felt sorry for Plum, that he has a sibling with special needs. You did all of the above within two minutes of you standing in front of me. 

Mango is perfection. His NG tube, hearing aids, eye patch and all. He, as a whole, is entirely perfect. Everything you see in my kid that you define as not perfect is what makes me think he is so perfectly perfect. 

We are all perfect. Just the way we are.

If most of us can see this. Why can't you?

New Family Member + Update

We finally have a new addition to the family. Another little boy. I will call him Plum for his dark skin and round cheeks, so round infact that they hang off his face a little bit. 

It has been ten weeks since Plum arrived and boy has alot happened. So here is everything in a nutshell...

Plum was born on a wonderful Thursday of February. We spent two days in hospital, leaving on the Saturday. On the Monday after we went into hospital for Mango's barium swallow assessment. This is an assessment, where Mango is being seated in a chair that is surrounded by a huge x-ray machine. I bring a whole bag of different foods that he usually eats and we feed him the food while this x-ray machine moves around his chest area (back and front) to see if any of the food we feed him goes down into his lungs. Which in shorter words is called aspiration. The results came back positive. He was aspirating on thin fluids and food. I would also like to just add that I actually saw with my own two eyes the food go down his chest. It was like a big blob that got stuck at the top of his chest and then dropped to the bottom of his chest. It was so surreal. One doctor and two speechies were present at the time of the assessment and they couldn't believe how much food was going down his small throat. We went home that day with strict instructions to only give him thicker foods and and no fluids. The following Friday we spent the day at the hospital (again) to put a nasal gastric tube into him so we could keep well hydrated since he cant have any fluids.

The next few weeks were full of appointments with the paediatrician, early intervention, our yearly vision assessment which our results were given straight away. It stated that something Mango could see within three meters and 'normal' adult could see within sixty meters. Pretty much telling us in the nicest way possible that he was blind. Well legally anyway. Yes, Legally blind. We also had an endocrinology appointment for growth hormones which we were currently rejected because he didn't meet the criteria. Absolutely ridiculous because when we checked the criteria, he passed all of them. 

This last week we also had BAER test (hearing test) for Mango. He had to go under anaesthetic. Those results also came back that he had a mild to moderate hearing loss. Mango will need hearing aids. 

As you can see, my baby has been through alot the past few weeks and it is only to get busier during the May period. All while this is going on, our dearest Plum has been as well behaved as I could have asked. He cries when he is hungry and sleepy but happy to just sit around and watch everything that is going on around him. 

Please if anyone has a story to tell about growth hormones that could help or give me some information with what is to come, please do say something. 

I need to go back and attend to my twins! 

Mamma of Mango 1 and 1/2 years old (size of 6 month old) and Plum 2 and 1/2 months (size of 2 and 1/2 month old) =)

cutepaws.com

EXHAUSTED

Chromosome 14 and Chromosome 18

Chromosome 14 and Chromosome 18 are Mango's affected chromosomes.

There.

I said it.

Finally.

I'm not sure why I kept the chromosome numbers a secret the past year. I was mostly worried about me telling people the chromosomes involved and they would search it up on the internet the same way I did. Find all the information that I found and freak out. Like I did. I also had a small hole in my heart worried about how people would look at Mango after they knew what they did. So many other small reasons, like I was trying to protect him from the worst. I think now, I was trying to protect myself. Protect myself from opening up the wounds that haven't really healed. The wounds that probably will never really heal but only close with a thin layer of skin.

When we received the diagnosis for Mango, the geneticist couldn't have stressed more, that we should not search online. Ofcourse, that's exactly what I did as soon as we got home. I can't say exactly that it was a bad thing or a very good thing but it was definitely more good than bad. I shocked myself with all the pictures I saw and all the things I read but in time I came to accept that, that could be the worst and I would have to live with it somehow or another. Everything I read or learnt something that had something to do with Mango's chromosomes, I would share with my husband. I feel like I was trying to peel our hearts open layer by layer just to torture myself so my husband and I would stop feeling emotions. The more it hurt to read, the more times I would reread and reread what I didn't want to read anymore. In time we came to accept it all somehow, ready for everything we had learnt.

I would also like to share with you, everything I have learnt about Mango's unbalanced translocation.



P.S. Thank you from the bottom of my heart for sharing this milestone with me in opening up about Mango's chromosome numbers. It's taken more than a while to come this far and I am very glad that I have finally gotten this off my chest. Most of all, thanks for putting up with all the ranting...

Keep in touch!

Hello you! It feels like its been ages. 

Mango recently got a new chair. It looks like someone cut a piece of their corner wall out and added cushions around it, to make it look 'professional'. It sits on the floor, a wedge between his legs to keep his legs straight and to keep him from thrusting/ arching and strap that hold up his upper half. i feel bad putting him in because it looks like I'd tied him so he cant move. Which in reality I actually have done just that, but not for the reason I feel but for the reason to hold him up so he can play with toys. Because seriously, lets face it. Hypotonia is the devil. I think it is anyways. Mango has also got his own special table that wraps around him just so neatly. 

On a different note. If anyone reads this (which I dont think anybody reads this except me). Mango has finally seen a neurologist for his so called 'seizures/infantile spasms'. At first we decided to leave it and just wait it out since they haven't been occurring very regularly.  Then I get a phone call from our neurologist and she said that she spoke to her colleagues and they all think its seizures and to start him on medication. We need to go through blood work first to make sure its all ok. She prescribed us Epilim. Anybody? Anybody ever use this before? Experiences please? Im not asking. I'm begging. 

I have met many parents with children's who have been diagnosed with seizures but  the medication they use are much stronger like steroids and stuff. Oh My GOD. Don't get my started on the stories they have told me about how all the strong stuff effected their kids so bad. It was scary. 

All I see online are medical websites. I don't want a medical website. I want parents experiences because after all. Parents know best because they see EVERYTHING. And doctors? I don't know. I trust them to a certain extent but come on now, most doctors go off by just guessing their way through until something works. They tell you all tiny weeny side effects that are 'oh not that bad' and they make the reasons to use the medication all fluffy and beautiful. 

So please, anyone out there. Parents, people, someone.... anyone?

.

Mango has been in hospital because of bronciolitis. His been so floppy and weak. I sit here bouncing his rocker and when I look at him, my heart breaks. He fights everyday and so I asked myself what's the difference now? He is still fighting, fighting off an infection. The difference is that the past few days, I've seen him surrender. I don't know how other mothers do it. I look at my baby who is attached to a feeding tube and oxygen. His mouth hangs open because he has no more strength to even holding closed and I ask myself how can I fight for him? I know it's just something that life is - to fight everyday. I thought my heart couldn't break anymore than it had but I as wrong. I as very wrong. My heart breaks as if it were never broken to start with. Mango looks at me with swollen pink eyes and tears streaming down his face, crying for me as if begging me to help him. All I can do is pat his back.... 

Please keep us in your prayers....

Update - Orthopaedic Surgeon

We had an appointment with the orthopaedic surgeon the other day. His assistant looked at Mango's feet and said they looked normal! He didn't really know what he was talking about obviously. The Dr said that what ever we did, Mango would still need surgery regardless of what we tried to do. Right?.... Wrong. Don't get me wrong. I'm very happy to be wrong in that situation.

The Dr came up to our table, looked at Mango's feet and he also said they looked 'normal'! As if his feet were never really vertical talus in the first place. He continued telling us that in his whole career he has never seen a vertical talus in his life that has fixed itself. By that point we didn't really know what to say. Subahanallah!

I do believe that my loved ones (which doesn't count as many) prayed for us everyday. We dreaded the day that they would tell us that our little Mango would need a surgery to correct his foot. In Mango case - with his chromosome disorder he can forget things. Forget things as if he has never done something before. Which means that if he started to roll a little bit, even on his side or kick and then he had an operation to correct his feet (which of course would have been for the better) - there is a very big chance that he could forget to use about using his legs all over again.... 

So Alhamdulilah... Glory be to Allah - The Most Great - The Most Compassionate. 

Yay!

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.

ehh...

I had a few friends over the other night. Put my little munchkin to bed and made sure he was drunk with milk that he couldn't even keep his eyes open to finish the bottle. I ordered a pizza and everyone else made dessert. Sat down all together, let the kids run wild while we sat in at the dinning table (where by the way many great conversations have taken place) and we chatted away till even the mice couldn't stay awake.

Chit. Chat. Chit. Chat and I was telling everyone about my terrible history with the paediatric orthoptist at the hospital when I realised that I was reopening a wound that hadn't even healed yet. It felt like I was scratching at a scab and unfortunately I had successfully peeled that dried layer of blood off and I before I knew it, i had started to bleed. I broke into a million pieces without being warned.

I felt hopeless. That very moment I felt like I couldn't go on. I couldn't do it anymore. It was the last straw that I had to give and someone had taken it from me. I felt like my lungs were being squeezed and my heart was about to come out of my chest any moment. I broke. I broke and all the strength that I used to keep myself together was yelling it. That week I was also suffering from a sore throat and was croaking. So imagine  runny nose, puffed eyes and red face make a nice crying picture... except when you turn the sound on and all you hear is a frog croaking uncontrollably as if cheering for the footy.

After a few minutes of what seemed like a fight to get myself together and stop croaking uncontrollably. I felt like all my armour had been shined although dented everywhere, I was ready to begin again. Which also, brought me to the the thought "hold on. I have no voice. I actually have NO voice. How am I supposed to be my son's voice and be serious when everyone around me was to busy laughing at my croak instead of concentrating on my words." So I did the inevitable.  I drank an asian remedy for a sore throat. Pear, lots of blended ginger and lemon. Hold it! As much as colourful rainbow that might sound, it is really rather-stick-your-finger-in-your-mouth-and-vomit-because-that-taste-is-enough-to-kill disgusting. No lie. Try it if you don't believe me. Before you do though, let me know and I would like to see your face as you do it. =)

Diagnosis, grieving and accepting

GOD always has something for you,

a key for every problem,

a light for every shadow,

a relief for every sorrow and

a plan for every tomorrow

Dear Mother and Father of a special needs child. It is nothing that you did or did not do that could have made this happen or is the reason that your child is special needs. It just was. 

From the moment Mango was born, I knew something was wrong. It was my maternal instinct that told me that something but I don't know what, was wrong. I used to tell my husband that Mango was sick or something but it just didn't feel right. He used to tell me that I was dreaming. 

Ofcourse, lo and behold 9 weeks later we received the diagnosis that our precious boy had a very rare chromosome disorder. So from then on... I always trust what my gut tells me.

{After diagnosis, the family goes through a whole process or recovery. It feels as though someone has shot you in the heart - your heart is aching, screaming in pain but just wont stop beating and suddenly the next thing you know your in a coma. Your awake but your body paralysed. At first you thing that maybe your dreaming and you can't understand why or what has just happened. You can't scream out and ask for help because the voice inside your head is screaming but your mouth isn't moving. }

From this moment on... everyone carries on with their lives, nothing about it has changed except that your paralysed and the only people suffering is you and the people that are closest to you. Well in my case.

Grieving. Then we finally learn and understand what has happened. How could this have happened? What did I do to deserve this? WHY did this happen? OH MY LORD!!!

Grieving can come in many different way depending on the person. I know for me personally I went in fight response and just turn all sensory and emotional feeling off and skipped right into doing something. Which ofcourse was o.k. for the time being. My problem? I never grieved. 

It's important for us to grieve. Those tears and sad words and cries for help. That all needs to come out. We need to go through falling down, curling up in a ball and crying before we are able to stand up, straighten our clothes out and stand tall. It's all part of the process. I hate to say it but I don't know if I can really get over this. 

Accepting. A friend once told me accepting doesn't mean that once you have accepted, you are not sad. To accept something you don't have to happy about it. You can still not be happy with it and who knows we might never be happy with it. It just means we accept and are ready to live with it in a different was than we have been. Not physically but more mentally. Our brains are still all mushy and squashed but it just means we can see a little bit, even a tiny winy bit clearer now. 

So my quest to get over grieving was a goal I was trying to reach for many months now. I can't say that it has been that easy and that it ever will be. I know now that my baby is the way he is. I would never change anything about him. I know that now. This is it and there is no wishing how thing were different but hoping that maybe this will start getting better.

He is who he is and I love him. I loved him from the moment we found out we were expecting. If he wasn't Mango, he wouldn't be mine. Not a day goes by that my heart doesn't ache from the hurt and pain I feel. The knowing of that my beautiful just so wonderful boy will ever have a normal life. Will ever be able to love and hold someone. To even KNOW that someone is there. To feel like he is not different but the SAME. I can't grasp the idea that Mango might one day realise the children around him are playing, running around, using their hands, talking and laughing, all these things that everyone takes for granted because they don't know how hard it is to 'move that hand, grab that toy or focus on that face' when these things are supposed to come naturally - and he can't do any of that. Will he ever feel INcluded rather than EXcluded. So my heart aches. I dont think that a day in my life will go by that it doesn't but now that I have grieved I see things differently. Yes, my heart is aching and screaming out   all week sometimes but I see things differently. I've cried all my tears till not one tear was left unshed and ached all my pains till the aching when numb. Then I finally stood up and told myself that it's over. That part is over. It's time to move on now. I don't know how but I will try. WE will try. 

 I see this as an opportunity. We will learn all our lives about how to do things. How to have more patience and how to love more and appreciate more. We will take this as an opportunity for learning. Well... We learn all our lives don't we?

P.S. So many parents have gotten to the end... If they can. WE can too. 

Mango and Eczema

Over the past few weeks Mango has been having a sever case of eczema. In the beginning I thought that it was just heat rash. But it starting to peel and scar up and we haven't even been in the sun! So sunburn was out of the question. His face, ears, chest, belly, legs, feet and arms all were covered in red rash. Poor little one. He would rub his face into my chest as if he were to try and dig a hole with his face. My friend's bub has eczema and she bought me QV bath oil and Dermaveen lotion for eczema.

I took Mango to the GP and she her eyes nearly popped out. She gave me some steroid cream (not strong ofcourse 1%) and she told me to go home and put it on him straight away. 

After a few days of using the steroid cream it has become so much better so i'm back to just using the QV and Dermaveen. Well anyways, one thing I learnt from a friend was to wash him with oats. So When ever I gave him a quick bath under the sink, I would put some outs into an old stocking and rub it all over his body. Surprisingly he came out of that bath much more calmer and lets red. It works. 

Overall... Eczema sucks. Anyone have any other tips they would like to share? I would love to know. One lady came to me and told me to try and use Devondale butter. As in Devondale margarine. I haven't tried it yet...

Letter to Sue Austin 'Deep sea diving.. in a wheelchair'

Sue Austin deep diving.. in a wheelchair
image from ted.com

A friend of mine sent me this link to a video called 'Deep sea diving...in a wheelchair'. I read the title twice before I clicked the link that would send me to the video, I was like 'wwwhhhhaaaaaa?'. 

So before I put the link down for everyone to watch, I'd just like to say a few words to Sue Austin who was the lady who actually went diving in a wheelchair in the sea.

I'll begin by saying, thank you thank you thank you. THANK YOU. Your belief and motivation has not only inspired myself and people around the world but has also educated people on another perspective of what the word 'disability' means. It's an eye-opener on so many different levels. I, for one, can not begin to explain how much you have lifted my heart up from ten feet down in the ground. You're video gives my family hope, my Mango a whole new way of looking at life. Not one with limited potential of where our goal is to be the norm but a whole new goal of being more than the norm. I believe and hope that one day Mango can achieve great things but boy... I tell ya, seeing it is a whole lot different than just believing it. It suddenly changes the belief into reality and so with that I replace the word 'believe' to 'know'. I now KNOW, one day Mango will achieve swimming in deep sea, bungee jumping, parachuting or what ever it is he wants. If it's in his two feet or I have to carry him in my arms. We will achieve it. HE will achieve it.

So with that said, I hope all you wonderful people whether your a parent of a special needs child, special needs yourself or just someone passing buy. I do hope that this makes your day the way it made mine. I hope that it inspires you to see things differently and when the word 'special needs' comes up, you do your part by showing that instead of 'limited, handicap, pity' should be popping up in our minds we change that by thinking of 'love, potential and most of all able'.

Enjoy! http://www.ted.com/talks/sue_austin_deep_sea_diving_in_a_wheelchair.html

P.S. Thank you dear friend

Half roll

What an odd week. I sat around playing with Mango dangling a toy infront of his face wondering if he actually was looking at it or he was looking right through it. It took him 5 months to start using his eyes properly and start focusing. When I say focusing, I mean look at my face. Actually looking at it and not past it.

When Mango was 3 months he could roll from his back to a bit more than his side. More like three quarters of the way. At 4 months he got casts put on his feet to try and correct his vertical talus. We had him in casts for a week and between that time he couldn't pick his feet into the air, move them even an inch and definitely not roll. 

One of the symptoms of Mango's chromosome disorder is that he can learn to do something but there is no guarantee that he will remember it. This is what happened when we had him in casts. After a week of casts, he forgot how to do everything with his legs except kick. THANK. GOD. for the kicking. I was so grateful to see that he hadn't forgot about his legs all together. Three months on now, with alot of exercising and massaging, I can proudly say that he now has the ability to roll on to his side without any help.

I know this is not really much of a big deal to anyone else but for our little man, it's a great achievement. We were told that he may never be able to do anything. From lifting his head to sitting and even walking or talking. In these months that have passed, he can now lift his head briefly and roll to his side. =)

So for all those people who thought and said he couldn't. His proving you wrong. 

Exercises to help with baby's head control

• Tummy time using boomerang pillow, rollers, rolled up towel and placing a toy infront of them
• Flexed carry "In a ball"
  - tuck head forward aiming chin to chest
  - hold both shoulders forward to help baby bring hands together in the middle
  - bend knees up towards chest
  NOTE: They don't need to be all scrunched up so their squashed but something along the lines of those rules.
• Pulling up to sit form shoulders ( sitting on the floor with your knees bent, place bub between your belly and your knees)
  - keep his head in midline
  - this position is a lovely one to use for talking to bub, working on eye contact,showing him stimulating toys, etc.
  - hold his shoulders forward bringing his hands together closely so he can feel them and learn to bring them to his mouth
  - Gently pull him up as far as he is able to control his head

Exercise to help with rolling

• Turn his hips slowly to the side as if he were to roll
• Allow him to try and lift his head while on his side (lifting his head so his ear will touch his shoulder)
• Giving him firm pressure down through his hips so that he can more easily practise lifting his head up
• Play is side lying position, keeping top leg bent and assisting bub to reach for toy with upper arm
• Then slowly encourage him to roll onto his back again
• Remember to practise on both sides

All the best

Global Developmental Delay / Developmental Delay

Global Developmental Delay / Developmental Delay

What is it?

Global developmental delay (GDD) or developmental delay (DD) is a term used when a child is slower at meeting milestones than other children. Delay may occur in the way a child moves, communicates, thinks and learns, or behaves with others.

Causes

GDD or DD can either be temporary or permanent. Scaling from mild to severe. In most cases, developmental delay is related to some form of neurological abnormality. This may be due to genetic or heredity disorders or other developmental disorders that affect the nervous system. 

WHAT CAN I DO ABOUT IT?!?!

Early assessment and identification of possible causes can help. When medical conditions that cause GDD or DD are treated, usually children's functioning improve substantially. Regardless of whether the cause is known or unknown it is important to remind ourselves that children with GDD or DD continue to learn, although more slower than others and in sometimes in different ways than most. 


I know first hand how hard it can be to receive devastating news about your Bubba. It breaks our hearts to see even the tiniest of things happen to them, like the scars on their face made by the nails our Mamma brains forgot to clip, let alone that be told the news that bubba has GDD. 

I'm going to say this anyways, even though it feels so ridiculous because I myself can never get myself to do this but THINK POSITIVE. Finding out now or seeing the signs now is a good thing. It means that the first step is taken and we can now move on to the second. Which is doing what we can (obviously after all the tears).

From now on

So here's the thing. I dont know how other parents with disable children do with explaining or breaking the news of their child's condition to everyone and anyone who asks them. Super parents.

Its been 7 months since our little boy was brought into the world. This means it's been 7 months that we have played visit to the children's hospital about 3 times a week. it's been 7 months that we've been up and down rollercoasters of news and 7 months that people again and again have asked us how Mango's doing (because they can see something is wrong). Which for me, I understand that from the deepest part of their heart they are asking because they care. In the last 7 months I'v probably told the same story of what Mango has been diagnosed with and what that means more than 1 million times. What have I got to be complaining about when other parents have been doing it for years?!?! Please tell me your secret....

I wonder if I should have a tape recorder and everytime someones asks me that same question, I would hold up my hand signing for them to stop talking, pull out my tape recorder and press play. I'd like to see that happen.

From now on, when someone asks about Mango. I will tell them he has global developmental delay. This means he is delayed in EVERYTHING. I'm sure most people know what it means. It would just be easier on me and everyone that when I say global developmental delay, they will just nod as to say they understand. Countless times have I told someone that Mango has a chromosome disorder and they look at me as if I just told them I went to the moon and met aliens. 

What hurts the most is seeing how people look at Mango after they know the untold truth. That look of fear and disgust. There will always be people who can't fathom the love and rewards these children bring with them.

Are there any Mamma's out there who have been through the same thing? (daaahhh... I know there is) Please let me know what you have done in your situation. Maybe I can do it that way too....