its not fair

[suemp]

:crying: my eldest boy is 5 yrs old and was born with low muscle tone requireing a year of physiotherapy, countless tests and speech therapy. i always felt like i had failed somehow. the mothers at playgroup used to treat us like the poor mum and bubs with "the problem" and i always felt like i had to explain his condition

fast forward 5 years and my beautiful baby is 6 weeks and is showing signs of being a floppy baby too. he has to see a paed for this and also cause they dont think the trac somethingy hasnt formed properly in his throat cause he is a real noisy breather. im scared he will need an operation for this and scared once again i will have a child who isnt quite right (does that sound horrible..cause i really do love my bubbas but those who have children with any disability might understand)

i dont get it. i dont smoke, or do drugs and hardly drink.

thanks for listening

[Mum&bubs]

I'm so sorry to hear all that :hugs: I couldn't imagine going through that so good on you for being so strong. Your little boys are little troopers! Take care of urself hun :hugs: :hugs:

[*~alegna~*]

sending you big :hugs: You got your babies for a reason suemp...Someone upstairs must think you can handle it & are the right person for the job

xxxx :kiss: xxxxx to ya!

[V8]

Well i can sorta relate, i have been blessed with a healthy bub but my DH has a disability an Acquired Brain Injury, and it hurts that he's not quite right and i have to explain it. I admire anyone that has extra challenges in their lives.

[rynosmum]

It's not wrong to wonder 'why'.

We can't choose the hands that we are dealt but we can choose how to deal with them. You sound like you are doing an amazing job. You are obviously a very loving mum to your little ones.:hugs:

[ryma]

My heart goes out to you. The thing with your bubs throat sounds like a floppy larynx. The correct term is Laryngomalacia. My DS1 was diagnosed with this at 3 weeks. Up until he was a year old we had a terrible time with this when he had a cold as he often seemed to choke on his own phlegm, so he moved into my bed so I could prop him properly and keep a close watch on him. But don't fear things did improve in that department. The noise of his breathing became worse over time, but started improving once he turned 2. It is very slowly getting better. When he was 19 months he had a Larynscopy (sp?), this showed he had a sever floppy larynx but they were happy that he was getting enough air into his airways and he was putting on weight so they said it was better to let it fix itself rather than have surgery to remove it because the wounds would be very prone to infection and take ages to heal.
We had a terrible time with strangers and their hurtful comments behind our back eg "How could they bring that poor child out in this weather when he is so sick". It would make me so angry and in the end I developed very thick skin. Some people are fantastic and ask if he is ill, I am happy to explain about his condition to them.
His breathing is still noisy now, especially if he is excited or running around. Snoring is something I think will always be a problem for him (pity his future wife...lol). But sometimes he has quiet periods where he has no noise and he just seems like a normal kid. My main fear is when he starts school (hopefully it is gone then) that the kids pick on him for it.
I am starting to believe that my DS2 may have a slight floppy larynx because when he is crawling fast he is very noisy and DS1 noticed this the other day and said "Matthew sounds like me Mummy!" Broke my heart.
But really I am lucky as apart from the boys having a problem with their kidneys they are healthy and happy and they really have the rest of their lives to look forward to. :thumbsup:

Suemp if you want to ask me any questions about this I am more than happy to help.

PS. Is the noisy breathing on the intake of breath or exhaling????

[~Kimba~]

Oh sue :hugs: please don't feel that you failed, it isn't your fault! although I can completely understand you feeling scared and frustrated and wondering 'why me'...you poor chook :hugs:

The way I see it is that when we face challenges with our babies, it just makes us stronger, and reinforces our special loving bond with them even more.

You are the best mum your boys could ever have, you have the strength to deal with whatever might come their way, and you love them absolutely - which is the most important thing. They're lucky to have a mum like you! :hugs:

[Sheer Bliss]

:hugs: I am not sure what to say, but it is not fair that others have treated you differently.

Everything that we go through only makes us stronger, and there was probably nothing that you did wrong - it's just nature. I am sure you are a great Mum!

[suemp]

kanes breathing is noisy on the intake. its really bad after a feed but is there pretty much all the time

in terms of floppy i ment my first son and appears this sons whole bodies are floppy. they have poor/if any head control. slump forward etc and are slow developers
thanks for all your kind words

[ryma]

Sounds definately like a floppy larynx (but I am no Dr). Some babies do have trouble with feeding who have this condition too and they would be worse after a feed because of the milk. I used to feed Ryan while he was upright as much as I could because then he didn't gag so much.
The low muscle tone thing must be so hard but remember how far you have come with your other child so surely you can get through this. :hugs:

[suemp]

:hugs: :kiss: you lovely ladies

my eldest wants to say thanks too:brakgvvbbygyhguodhhib hlhx

[oleander]

:hugs: to you and your beautiful boys

[SalTheGal]

sending you big :hugs: You got your babies for a reason suemp...Someone upstairs must think you can handle it & are the right person for the job

xxxx :kiss: xxxxx to ya!

Sue, you are such a strong woman- I am sorry that you have to go through this, but the love you have for your boys is amazing and they are in the best hands with you to take care of them. Look at what an amazing job you have done with Jake, keep strong! :hugs: :hugs: