Do you have a special needs child??

Ya shavy obsolutely.when I saw this msg I was unable stop my tears.I think God is listening to all of our truth full prayers.

 

I know this is a pretty old thread...but seemed to relate to my present scenario.
I have a special needs child too.
My second child, who is almost 2 yrs old, is "severely hypotonic (less muscle tone)". Umpteen tests done so far have not turned up anything...nothing at all! All tests come back normal.
My daughter, like I mentioned above is 2 yrs old, but her neck still doesnt hold. Yes....she's not met any milestone other than rolling to her right side. That's the only thing that she does right now.
She also suffers from laryngotracheomalacia (airway collapse), which causes lot of respiratory distress to her. When she was put on the apnea monitor, they saw that she is only getting about 80% oxygen (expected is above 95%).
She has cognitive issues as well. She has problems with her vision (sees perfectly, but doesnt respond...which means problem could be in her brain). She got her Brain MRI done twice already in these 2 yrs, 2 nerve conduction studies, 2 genetic tests, ultrasounds, 2D echo cardiogram and millions of other blood tests....everything is normal.

She gets Physical Therapy, Speech therapy, Vision Therapy, Developmental Therapy, Feeding Therapy and starting next month, Occupational Therapy as well.
Last year, I started ayurvedic treatment for her. Considering her age, we have to go slow so we only do the bare minimum allowed for a child this age, but we've seen progress since when we started ayurveda.

We've been told by my daughter's developmental pediatrician that my daughter will never sit, walk, talk. I'm a firm believer that everything that happens in your life, happens for a purpose. When the pediatrician said the above, I went into depression, but after a while, sought alternatives. And me, who never believed in ayurveda, is now a firm believer and so in awe of ayurveda!! I've now become a proponent of the same. I thank God that he brought this pediatrician in our lives. Yes, I did go through depression and still go through lows whenever I meet him because he always talks in the negative, but then he also is the reason why I sought ayurveda which seems to be helping my daughter. So I guess, whatever karma it is from past life which linked my daughter to him, he has already fulfilled in this life. Ofcourse, I do not know yet how much ayurveda is gonna help my child, but I do thank God for the minute improvements that she has made so far.

We have a really long journey ahead of us....I know that....I'm so eagerly looking forward to the day when my child's neck will hold. She's growing big now (2 yrs), so carrying her like an infant is getting difficult. Also, I feel pained to see her lying down in bed...for 2 yrs now!!

Let's see what God has in store for us

 

Don't give up mom. Stay positive. That is the only medicine will show quick improvements. In this very bad and judgemental world, your daughter is here to bring you joy. We are here to support you. Don't worry.

 

Thank you. Oh yes...she is quite an adorable child with a beautiful smile!

Honestly, I very truly and sincerely believe that everything that has happened in my life so far, happened due to a purpose. I cannot see it clearly when I'm going through that phase, but later, I turn, look back and I understand why it happened and why and how it was good for me. Am sure that's what I will have to say about this current phase as well. But since I'm presently going through a tough phase, I need lots and lots of mental/physical strength.
I go through such a rollercoaster of emotions on a daily basis....I pretty much live in a state of denial....maybe because we do not yet have a diagnosis, so I dont know exactly what to expect and hence have huge hopes for my lil' one.
I've cut myself off from my friends, neighbours and do not step outside the house other than for groceries, doctor appointments. I do not go to anyone's house...especially to those people's house where they have a kid either the same age as my daughter or younger, because when I see them do the regular stuff that babies do, my heart aches so badly and I start crying right there, which is quite offensive to the parents of that child. I prefer being a frog in the well...living in my own world. But ofcourse, it has ended in me being depressed all the time.


Regarding your suggestion about changing Dev. Pediatrician, I live in a very small town...and there are just 2 Dev. Peds here. The one that I am seeing is the one who has specialized in Hypotonia and fits my daughter's case well. Also, nowadays, I dont just accept and fall for what they have to say about my daughter. I've been told by the therapists here that he has said the same about other kids who are doing more than he expected them too. Also my friend whose daughter too had some issues after birth a couple of years ago told me not to blindly believe what these docs say because here in the US, they always give a worst case scenario and paint a negative picture, maybe because they are scared of lawsuits. I dont know....but he doesnt impact me as much anymore.


I really hope that God showers his blessings on my lil one. She is still a baby and it pains us that at this age she is going through such tough times. God has blessed me with good health so far....the first surgery I had in my life is my first child birth (c-section), followed by my daughter's birth. Other than that I only met an endocronologist so far for my own health concerns...and this pretty girl of mine has already seen cardiologists, neurologists, opthalmologist, ENT specialists, gastroenterologist....u name it and she's seen and done it all! My first IV prick was for my first delivery....and this cutiepie of mine has already had 4-5 hospitalizations (and ofcourse IVs).


Praying hard that God blesses her with good health. Am sure we'll know very soon what He has in store for us.

 

My hugs to you curiosgal. As Others said please keep going, I can understand your pain but we have to accept and start thinking of next step to help her. Be positive and confident, try researching online and get more information.
Sometime we do find a way or path...god bless you and your family.

 

I know this is a old post.I have a girl with autism.
My husband has been verbally abusing and calling bad words for many years, from the time autism entered our lives. Is this fair