ok so we left off at the place were I was emotionally about Sophia's hearing aids and the first fitting for ear molds. Sophias story gets a little complicated from here so ill try my best not to loose anybody.
At this point Sophia is about four months old and we are going in for weigh checks and regular pediatric appointments. However its right about this point that Sophia's father and I notice Sophia not meeting milestones that are normal for this age. But everyone develops differently and we know shes not hearing things right.. so we don't dwell on it very much.
At the pediatricians office there are two nurses. one is an older very maternal woman named joan and a younger Puerto Rican woman named Maria.( turns out these two are going to become a big part of my life. and the first members on TEAMSOPHIA)
Right from the very beginning I was emotional about Sophia's hearing tests. After she failed the first screening we tried it no lie like 15 times in the office and more then once I left upset because she kept failing. Right off the bat Joan was there for us, to give us hugs and encouraging words. She would hook us up with free samples and she had an immediate love for Sophia that just made me and Luis very very happy with her as Sophia's nurse. Her support and help was what motivated me to get into the medical field. I want to be able to help other people like that.
The trust we had built up with our pediatric team over Sophia's hearing issues was quickly tested when they started to become concerned with Sophia's weight gain and head circumference. She was getting longer and fell within normal limits for her height. But her weight as beginning to fall off of the curve she was originally on and her head circumference was pretty much a straight line.. she wasn't on the charts at all anymore.. on one hand I trusted them and had them behind us as help with Sophia's hearing issues.. But now her doctor is beginning to resemble a witch hunter like she was searching for shit to tell me was wrong. Again I got upset and defensive with her.. and Luis was 5 steps ahead of me already thinking about new doctors for Sophia's. I wasn't ready to give up on breast feeding. so we decided to start cereal and baby foods and see if that impacted her weight at all. and we adopted a wait and see method for her head circumference. mostly because I refused to deal with it.
in that one appointment at Sophia's four month check up we discussed hearing aids, weight issues, formula, baby food, taking Sophia to have her eyes looked at ( because hearng issues and vision issues are often closely linked), and possibly seeing a neurologist or neurosurgeon if her head circumference didn't start catching up. our heads were absolutely spinning. true to form Joan and Maria swept into the room gave Sophia their love and a few shots and sent us on our way with instructions to call should I need to talk or had questions.
This is when things went from manageable to mayhem.....What I had left out for the sake of getting to the point was in order to obtain the prescription for the hearing aids we had to see a cardiologist and a ear nose and throat specialist. just incase, to rule out other possible causes of hearing loss. so just to keep track ( this will be fun by the end) Sophia by four months old has already seen
- Pediatrics
- Audiology at ccmc (X5)
- Cardiology
- Otorhinolaryngology
- Audiology at soundbridge
- Birth to 3 (ongoing weekly appointments with her hearing impaired teacher)
PLUS let us not forget that I am a human, so all the normal new mom stuff was happening too. I was trying to deal with me new body, my new baby, learning her queues and wants , working on her schedule, my new classes that were starting any day.... and all the insecurities, hassles and aggravation that come along with all of those new things. Plus the people I loved were still living their lives and going through their own issues and needed me in their own ways and it was hard for me to have to pull back from people I cared about. People who I wanted to be able to help. it was beginning to feel isolating. it was a lot. I was overwhelmed and started to feel like maybe god got confused and set me into the wrong life. Because I was pretty convinced I wasn't strong enough to deal with this, and its not like I was going to sign onto Facebook with a status update...
" my daughters health is deteriorating in front my face, my life is falling out from under my feet i'm not sure if I trust that there is a god in the sky and most days i'm to afraid to look into my own heart.. because honestly I might not survive what I find there" ..
(it took two solid years before I was comfortable enough to share this with everyone, and it took some convincing..)
Looking back its amazing to me just how many times I felt like I hit my wall. Just how many days I woke up feeling like I couldn't do this.. and how every day since then I have woken up and found a way to not only do this but be good at it.. hell some days i'm even bold enough to say that i'm kicking some serious ass at this living life with a special needs baby thing..
but back when all of this was going on I was beginning to go numb to it... as a defense. to just become unaware of how much she wasn't doing. So that I could focus on enhancing the things she could do. because not everyone is good at everything.. I just figured she was going to be a bit behind.
We were developing a new way of life. I was totally off the grid of " my life plan" I was supposed to go back to work full time and we were going to move to a nicer place and I had all these plans when I found out I was pregnant. Now we had to work on a whole new plan. Along with dodge what seemed to be a doctor with a hard on for "guessing" that something "might " be wrong because "often times this happens" it was just too much.. and it was testing my positive outlook I managed to find on her hearing loss...
hearing aids I could handle, this was a whole new scary ballgame..
like I said, this is when things went from manageable to mayhem.
love you all thinks for reading!!!
ill try to make sure I post at least a little something everyday!
-K
(below photos of Sophia and I when she was about 4-5 months old, on a daytrip with daddy to the forest park zoo, I have been going to since I was her age)
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