Wednesday, March 23, 2011

A Doctors appointment

I mentioned a month or so ago that little G was going to have a few tests run and we would follow up with the pediatrician. The Dr. spent almost an hour with us. She has a nurse in training from the local college and I thought she was incredible. The nurse in training was better than many of the "trained people" I have worked with the past few months.(she was from Chile and spoke lots of Spanish with little G.BONUS!) Maybe some need to go back for a refresher course in bedside manner? I really appreciated how she treated little G. She interacted with her. So many techs and Drs as of late treat little G like a thing while they speak to us etc. I appreciate it when I am seen as a patient for you to tell me what you are doing and alleviate my fears of the unknown. Just because little G isnt speaking doesnt mean she doesnt understand. Just because she is tiny, or you can tell she has down syndrome doesnt mean she cant comprehend. Maybe my perceptions are way off base.
I am thankful that I didnt speak my mind about one of the Drs we saw in preparation for this follow up. I think he has a good reputation and what was said when we met with him was just processed in my mind as something totally different than what he meant. Our pediatrician hasnt gotten any of the audiology results since that ended up being a HUGE process due to wax buildup in little Gs ears.
First one set of tests,
wax removal appt,
then repeat the audiology tests,
and then some......
Little G does have "mild hearing loss" and it is due to nerve damage.
This quite possibly means that we will be putting little G in hearing aids.
Take for instance yesterday at the Dr.
Little G was looking at a book and had seen a picture of a squirrel. She signed squirrel when I told her that is what the picture was.... then when the Dr was in the room I asked her to find the picture of the squirrel and she signed "school". While at the audiologist appointment the Dr asked her to touch her nose little G signed "snow". I had been seeing this for a few months and also have had to turn the volume on the TV to a certain level so that she doesnt feel the need to stand with her ear up to the speaker.
Our past has formed our perceptions of hearing loss,
no matter what degree,
it needs to be treated.
We are seeing communication issues because of the hearing loss,
no matter how mild it might be,
no matter if its typical to children with down syndrome.
These factors do not matter to us.
If there is a hearing loss in our household it will be addressed if it is causing learning difficulties. A child learning a language cannot move forward if they are not hearing what is being said clearly.Then when you add how soft spoken I am.....
I also dont want to have to announce to everyone in her world. "Little G has mild hearing loss. Please speak up when you are talking with her."

We did not come up with a definitive answer to Little Gs "spells". All of the tests have come back with good results. Due to little Gs behavior, we were all distracted and we did not discuss what our next steps will be. I know the Dr will be calling me after she consults with the other Drs about the hearing loss and test results. I will bring that up then too.
where is my post -it pad......

I just mentioned little Gs behavior. I am going to need to figure out a "plan of attack" for our next visit. Lets just say that Dr walks in and little G squeals with delight.(Dr loves little G and would love to adopt a little one with "a little something extra" herself.) "oooh one of my favorite patients!" yeah, a little love fest ensued. ;) Little G had to play patty cake, sing her songs and be the center of all that went on. It made it hard for us to discuss the issues at hand and stay on track. We did rather well in spite of it all.... I was shocked when I left that we hadnt discussed the other tests and how to proceed. We really were broadsided by a cute little girl with piggy tails and overpowering personality.

We did discuss a behavior that I had taken for granted as "something little G does" but recently was reading a blog and thought,"huh. I think little G does that."
I described little Gs response when I turn music on and how instantly like flipping a switch little Gs eyes roll back in her head and she starts going round and round in a circle. Im talking 20 mind straight or more.
I told the Dr that since reading that word "stimming" and correlating her behavior with it I now found myself upset when she does it. Whereas before it was cute for little G to dance when she heard Ecuadorian types of music or, gasp, 80's music..... The Dr laughed and said it was nothing to get upset about.
I will have to read more about it.
I know nothing about "stimming".
I had kept that "huh?" moment tucked away in my mind to discuss with the Dr so that SHE could give it a name,
Not me.
(lets not cross the bridge until we get there type thing.)
Or, perhaps, I dont want a label.
Im not going out looking for new things.....
I dont like adding things to our list.
I think little G has alot more to teach me.
Like being scared of labels,
names of things that to a mommy person seem scary.
The unknown.

The Dr. asked me who our OT and PT was. I replied,"me." She asked if Id like a few clients! ha ha! I told her it wasnt a one hour a day or one hour a week thing that has gotten us here. Its day in and day out. Talking, signing, playing games, music, its hard work.
It felt good to be validated.
I am just doing whatever it takes for us to make progress.
This is my job.
If I dont do it who will????

I contacted the agency in charge of roads and bridges about a speed bump.
This has been an issue since before we moved here.
Ive been told by our neighbors about the runaround they were given.
I have an e-mail in my box about how to proceed.
Not sure how this will look.
I mentioned this to our pediatrician and her comment was,
"Good luck with that!"
I am finding this new person inside me that is very very protective of her little "chick". Have you ever seen a mama hen with her little Spring chicks?
We had beautiful laying hens and let them have chicks one year. The hens were tame and let us pet them. Those chicks were so cute and fluffy....... but those mama hens would go psycho on you if you tried picking up and touching their little chicks...

Off to enjoy the rest of the day.
When Little G is napping I will get lessons together for Art classes tomorrow.

I remain,
Under His wings,


  1. Anna, having a child with anything that makes them not typical is not something you simply get used to -- about the time you get used to it or think you have, something else creeps in! I have found it to be more along the lines of embracing and accepting -- labels do not enter into this for me -- it's accepting and embrancing this particular child as a child of God and therefore "good!" I always go back to that when I see a behavior in one of my children that I do not necessarily like! Some of those behaviors we've changed and some not! The ones that haven't changed simply reveal the child God intended and is a matter of acceptance on my part. It's hard work, Anna, but you are up for it! You love her and that will go a long way -- no! a very, very long way!

    My blessings to you as you endeavor to be all she needs and a particular prayer that you will be mindful of when you need help (not that I see you needing it now! -- you know what I mean, I hope!)

    Grace & Peace, my friend! Peak in on that sleeping child and say a little prayer over her for me... tell her I love her too!

  2. You are one amazing momma to Little G.You were the one hand picked by God for so many reasons and as I read this post,packed full of so many things that you are doing and needing and loving about her,I know,beyond a shadow of a doubt,why.

    You are so lucky to have each other and ... who wouldn't be distracted by a darling little love in pigtails?I sure would!

    Prayers and love from California.


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