.

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....

We want to be heard

Hello all! So I've been looking around for some inspiration. I found lots but one thing in particular that I happened to stumble across was a comment from a mother trying to get her a special needs bed for her daughter and the government/hospital or who ever the staff was, gave her a hard time about getting it and called her a bad mother.

My blood is boiling slowly for this dear mother. Let me start off by saying that this behaviour from professional staff is absolute disgusting. How dare someone call a mother bad. A parents of a special needs child is a warrior. When we request, we request not for us but for our children.

We don't spend most of our days in hospitals, whether its for an appointment or an emergency for our own well being. We do it for ours kids. We sacrifice our time making sure our little ones have everything they need and everything that makes them comfortable.

I'm not saying that we are better than other parents. I know for a fact that all parents do their best for their kids. Special needs children just need that extra care, extra time and the extra effort. So while mothers take their children to gym so they can learn how climb a ladder or jump on a trampoline, we take our children to Physio therapy or OT so they can learn that they have muscles, hands and feet and that we use these to touch or hold.

So back to the point about the mother fighting for her child to have a secure bed a night. How could someone call a mother who had spent more time taking care of her baby and requesting something for her own child's safety be seen as a bad mother. I just don't get it. 

I understand that feeling very similar to the look that a few doctors gave me when I was asking them a questions about Mango as if to think I was overreacting. Yes, I understand I am a first time mum but I do have experience. I had the honour of baby sitting a lot for my sister and I got to know those children pretty damn well. I knew the look they had when they were sick or upto something and so on. Same thing with my son, except that its easier because I have that mother instinct that god has given me in my gut to send me messages on things that I should probably do for him.

I might not have all the experience in the world but the thing is I'm not claiming too. We mothers parents just appreciate being listened to and understood nicely, instead of thinking that we are just over reacting or paranoid. Am I not right?

Well... That was a bit of a rant in the end. Thanks for finishing though. Xxx

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!

Getting carried away with my thoughts

Hello!

Iv been looking around for a few good early interventions for Mango and looking around to see what type of early intervention would be good for us. Home base or centre base?

I was reading about it and their pretty much the same thing just the home base program is more convenient rather than actually having to travel somewhere, they come to you. They provide all the therapists for both. I'm actually very confused.

I have experience with the home base program and I have no experience with the centres. Maybe what I am looking for is a play group? Well speaking of play group... I have found a wonderful play group!

They are called Lifestart. Its early intervention except the waiting list is forever long so for now the playgroup will have to do as a substitute. The first time we went there was fantastic! There were about 6 parents there all with the special needs children and 'normal' children. They had games for all ages. It started off with playtime, then we all sat in a circle and sang some songs and after that all the mums got to have a cup of coffee and discuss our week or what ever the case was. It was mostly what paediatrician is good? What ophthalmologist is good? Who is the best neurosurgeon? You get the drift... I walked out that afternoon feeling really great. As is all my hard work or trying to find a support group of mothers that catered not only for me but your my little boy too. I found them. I felt sad at the same time to realising - I'm a muslim mother and there aren't any muslim support groups out there that I know of. I'll be on the look out.

It was a nice change to meet mother of special needs children. It so different to knowing your not the only one out there and you are not alone but to actually see it with your own two eyes, it feels like whole new perspective. Bringing me back to my previous post of knowing something and actually knowing (feeling) something.

Please if there are any questions or comments. I would love to hear it. Good luck!

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....

Heat Rash

So Mango has been dealing with heat rash the past few days. Poor bubba. His chest was red-purplish. In the afternoon I decided to give him a cool bath and settle him down for the night. I put him on the changing table and look away for a split second only to turn back to him to see blood all over his chest. He has scratched himself till he was bleeding. His nails weren't even long enough to scratch but his managed to make himself bleed. I stood infront of him for about a minute shocked and not knowing what to do next. I grabbed the closest piece of cloth I could find and wiped his chest. Only three scratches but lots of blood.

I put mittens on him for the night but he hates them. His was trying to rip them off using him mouth. 

Heat rash

Heat rash is also known as prickly heat or malaria is a bright red pimply rash on his neck, under his arms, or near the edges of his nappy or underwear when bub overheats in hot and humid weather. 

The rash often appears in folds of the skin and on parts of the body where clothing fits snugly, including the upper chest, neck, groin and armpits.

A few ways to treat heat rash 

• Avoid hot and humid environments. Move into an airy room or a shady spot and if your child is racing around, encourage some quiet time to reduce the amount of sweating. Try using a mini fan if you are out and about in a hot country or in the summer heat. If the weather stays hot at night, place a fan near your child's bed.
• Take off his clothes or dress him in cotton. Avoid synthetic fabrics, such as polyester and nylon, that trap heat; opt for natural fibres instead. Where possible loosen or remove his clothing and give him as much nappy-free time as you can
  
• Keep his skin cool. Cool the affected areas directly using cold, wet cloths, or give your baby a tepid bath or shower. Let the air dry his skin as much as possible rather than using towels; a little more nude time can help heal the rash
  

If you have anymore suggestions to prevent of deal with heat rash, please comment below so I can update this for all the parents who happen to stumble on this page looking for a solution. (I'm just dreaming here... As if anyone read this blog except me)

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... =__+