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

Congenital Vertical Talus

Rocker bottom feet also known as 'congenital vertical talus' is the term referred to the abnormal shape of the baby's feet, usually diagnosed at birth. One of both feet may be affected. It is not painful, but if left untreated, it could lead to serious disability and discomfort when walked on. 

Vertical Talus

It is characterised by the talus bone (which is a small bone that acts as a connector  between the foot and the leg and helps transfer the weight across the ankle joint) being formed in the wrong position, making the other foot bones that are infront of the talus bone shift to top of it. The bottom of the foot has no arch but instead curves outwards resembling a rocking chair, hence the name.

Many cases of rocker bottom feet are associated with babies who either have neuromuscular diseases, chromosome disorders or other syndromes. The exact cause of this abnormality is not known. However, rocker bottom feet/congenital vertical talus can be corrected. Non-surgically or surgically.

Non-surgical treatments includes a course of stretching and casting designed to increase the flexibility of the foot and sometimes even fix it. 

Surgical treatment includes an orthopaedic surgeon placing the bones in the correct position and applying pins to keep them in place. After surgery casts will be placed on the foot and stay there for as long as four to six weeks. After that, a special brace or shoes may be worn to prevent the vertical talus from returning. 

Note: Around 85% of babies with rocker bottom feet have an abnormality affecting their brain or nervous system. 

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.... 

Hernia

I remember that day like it was yesterday. Mango was just 5 weeks old and it was time for a nappy change. As I pulled the flaps of the nappy off, lo and behold there was a HUGE lump sticking out of Mango's inguinal area! I remember standing there jaw dropped while bubba was crying his lungs out. Well ofcourse he was crying, he hated nappy changes. As soon as I lay him down on his back and take his pants off, the entire neighbourhood could hear him.

Lucky for us we have a GP in the family and he was obviously the first person we called. Mango was then diagnosed with an inguinal hernia. Im not a doctor or anyone special so what did I do? Something called the internet. Boy did I learn something.

A hernia is when the muscle tissue is not strong enough. When a person strains, the intestines push through the weak muscle causing it to stretch. Sometimes the intestines push through the hole and gets stuck causing a blockage and sometimes it just stretches the muscle leaving a hole.

Call me a drama queen or over reacting. A mum who has never in her life heard of a hernia and changes her bubba's nappy 10 times a day, then one day is surprised by a huge lump. It was quite scary. If hubby hadn't calm me down, I'm pretty sure I would have run into the emergency room screaming my lungs out. Any mum's out there experience the same thing? Please let me know. I'd like to know i'm not the only crazy Mamma out there... Or am I? 0_0

It had been two weeks since we found his hernia and during that time he wouldn't straighten his legs or lie on his belly, crying all the time. We had booked and appointment to see a paediatric surgeon and fix the hernia. Very easy procedure. Easy for bub and hard for Mum. Then one night Mango wouldn't stop crying. He refused to do anything and everything except cry. So off to emergency we went. We stayed the night in the hospital and the next morning we the nurses prepared him for his surgery.

We met the paediatric surgeon who was to operate on him. He explained that he was going to push the intestines back into the hole in the muscle and stitch it up. Done! Healing time? Just a few days... then everything should be back to normal.

Thank god that was over. All the doctors that we met and all the medical websites we went on said that an inguinal hernia (unless it's a blocked hernia) does not effect the baby in any way and it does not hurt. Trust me when I say this though, after the hernia was fixed, Mango was a CHANGED little boy. Whether it was the hernia (which im sure it was) or that he just had a massive mood swing. He was just so settled. Im sure many Mamma's who have gone through the same situation could agree with me?

My Son's Diagnosis

We always knew our little boy was special. We just never realised what that really meant.

Mango was born in June, 2012. He appeared to be in good health, chubby around the face and just well... so perfect(to us ofcourse). With a distinctive birth mark on his foot and face just like his Daddy. We had reached heaven. 

The first six days of Mango's life, we were surprised to be visited by doctors, geneticist, occupational therapist, 2 paediatricians, nurses (lost count of how many we nurses we met), lactation consultants and the list goes on. He had a pronounce broad nasal bridge, low set ears, rocker bottom feet, high cleft palate and inverted thumbs. I only realised that it was actually an issue when the doctors started coming around asking permission to take blood tests. Sure, why not? So off to the lab the blood tests went. 

At nine weeks of his life, I received a phone call from the geneticist who invited us to his office the next morning. It was there that we were told the devastating news that our precious baby boy had been diagnosed with a rare chromosome disorder. I'm talking RARE as in no-one-in-this-world's-medical-history-has-ever-seen-or-met-someone-with-this-chromosome-disorder type of rare. He carried on to say that Mango may have severe global developmental delay, failure to thrive (which means growth problems), vision and hearing impairment, possibility of heart and kidney issues, neurological problems, muscle problems, may never walk or talk and have feet abnormalities (which he had). It felt so unreal. I was ready for them to scream out 'SURPRISE! It was a joke!' but that was no joke. It was so real.


NOTE: Most of the time when someone is being diagnosed with a chromosome disorder it usually involves one chromosome (most of the time anyways). However, in Mango's case. It's two chromosomes.

Every human has 23 pairs of chromosomes. Starting from 1 to 23. More or less of these chromosomes causes an imbalance making the body react and function in different ways. This defines who we are. We are all unique.

Updated: 21st January 2013