Feeling Down
oandmplus1
member
We started noticing my DD was different well before she turned 1, and have been going to EI since she was around 7 months old, she is 15 months old now. We also have done a lot of PT / OT in addition to EI.
I am feeling down because it seems that the more we try to accomplish, the more issues seem to arrise. DD was born with vision problems but can see relatively well (not sure how well exactly though). we later discovered she had sensory issues (sensory seeking and also has some texture aversions). DD's PT thinks she may have some motor planning difficulty and has hypotonia as well.
We have seen a pediatric ophtalmologist since birth who is dealing with her eye issues, then came the neuro developmental pedi, then we consulted a pediatric endocrinologist (hormone abnormalities are common with one of her diagnosis - ONH).
Now our therapist is concerned about her hearing, we have been discussing it with her and our pedi for months because of speech delays, but she doesn't even respond to her name or our voices yet (she is 15 months), but hears music and clapping and high pitched noises. So off for an audilogist appointment under sedation we go.
Then her OT at her first feeding therapy appointment today thinks she is tongue tied, so we now have a referral for an ENT as well.
I am sorry to be a downer, my friends don't seem to understand. I just never thought being a mom would be so hard. I love my little girl and can't imagine a life without her, or with any other baby other than her, and I just want to her to have the best in life, but we can't even get a diagnosis (other than her vision issues). I am so frustrated not knowing what is causing all of her developmental delays, and what her prognosis will be. I don't want to be patient anymore, I just want answers.
Re: Feeling Down
I don't have any advice for you, but I wanted to say that I understand. All the unknowns are overwhelming sometimes. I am trying to work on focusing on each day as it comes and giving him the best day I can.
I hope that you find some answers soon. You are doing all the right things. It is great that you are being such a good advocate for your daughter.
She is so cute! You are doing everything you should be doing (and more than a lot of moms probably do).
I know what you mean by no one 'getting' it. It's hard for other people to realize how scary it is for your child to have health problems. They freak out over a cold, you are wondering what your daughters vision and hearing are like. You kind of outweigh them on so many levels and people just cannot get that.
For us, it seems to come in waves..bam bam bam XYZ are wrong! Then we get a break where we aren't finding out a new dx but are maintaining appts with current specialists and therapies, etc.
Have you seen genetics yet? That would be your next step if you are looking for a genetic cause for everything.
Hugs & GL.
We have an appointment with genetics in September, it took almost 6 months to get in to see them.
I completely understand. Most people have NO idea what it's like to deal with issues.
A few things that have helped me: I've tried not to wonder why he is the way he is. Unless finding a reason will help with a treatment, there's not much it can help with. If the doctors think that knowing a cause would help with treatments, then go for it!
Also, try to celebrate the little things your DD can do or learns to do. Last summer, someone started a Brag Day Wednesday. I don't post anymore, but I have carried that idea with me. The idea is to celebrate what our kids can do and NOT focus on what they aren't doing.
But, overall, realize that your feelings are completely normal. I would say most people on this board have felt the same at one time or another.
Hugs.
It sucks donkey balls when it seems like you keep getting more dxs. We were fortunate that most of Nate's stuff was found out at birth and by 1.5 we were basically able to cross off a bunch of other possibilities. I tried to focus on the stuff we ruled out vs. the stuff we found. The ruled out list is much longer, therefore more positives!
It will get better. Honest. In the mean time, we'll be here for you.
I just posted above above about no answers and frusturations! I am sorry, HUGS!