Sunday, February 2, 2014

How I'm coping with my kid passing out!

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Bella is a sweet girl with a lot of medical issues. 
Life with a special needs child as sweet as my Bella is a day to day challenge to keep life normal. All I want is to attend church and not have to interrupt Church communion service because Bella passed out.  
The typical normal person has told me passing out looks like Bella has taken a nap. Sadly a napping child is not what we are dealing with. 1  minute goes by, 2 minutes goes by, my kid is still not responding or waking up but is alert enough to tremble ever so slightly and breath normally but so deep into sleep with just two minutes of falling asleep. This after she's poked her hand and pierced it with a pencil crayon while coloring in a book getting overly excited she poked her hand and came running to me with her little hand bleeding like it had a paper cut not a pencil sliver from poking herself in the hand.  I cleaned it up and out she went 1 minute, 2 minutes... If it had lasted longer than three minutes I would have had to take her to the hospital any ways and was mentally planning my game plan and making it so no one else would be disturbed during service but it lasted 2 and a half minutes. We still decided to take her to the hospital.
 This explains her bazaar behavior earlier in the week we kept her home Friday because she was feeling exhausted from Thursdays appointments.
We urgently had to leave church today mid service after bread and wine was served because Bella had a passing out spell.  I never live more than 20 minute drive from the hospital, the hospital we went to was only a 3 minute drive.

 We went to Er. 
The Er DR sent us home evaluated with vitals and documented everything we talked about.
The general Er Dr didn't know what caused her to have passed out but did tell us to follow up with Bella's dr. 
 Of course Bella was back to her normal self and getting into mischief like nothing had happen and knowing my little girl was getting chewed out for swigging a chair around in the waiting room while we filled out the forms for the insurance was a moment I am grateful for. I get another moment to just be a normal mother chewing out her kid for messing with stuff. 

 We see her dr on Thursday on top of the all ready pre set appointment's then we see the pre set appointment's Ot and Pt. Thursdays are always a day full of appointments starting at 10 am until 4pm. We get a medical exempt for it from the doctor the school isn't happy about it and is pushing us to get these appointment's set for a 4pm time but you know when you see a ot and pt place that deals with special needs kids and are good at what they do you take any spot you can take and unless you’re a parent of a special needs child you wouldn't understand that for a second. I'm not in any ways saying a school principal should understand this even if he has a PHD but he has to find a way not to try and keep showing his perfect ideas down my throat. Or my mommy claws come out at the school social worker in a not so friendly toned email and sent in hubby to deal with the mess. 
 For example the past two weeks principal suggested I take public transportation instead of taking the cab provided with her insurance. Even made it a point to say how he's lived here for 30 years and that he knows other parents who use it, I don't think that man has ever used Allegan country transportation a day in his life it don't cross over from county to country without paying double fair and waiting a hour in the cold.  while I for one will not pay for public transportation and pay for it again a double time for this man's perfect idea of public transportation would NOT get us to and from our appointment's in a timely manner safety and conveniently and cost effective after all isn't funding the bottom line and goals for schools not the kids needs.  The school is still working on transportation I don't drive and the school has to understand and work with us. Were doing the best we can with what we have and I am very happy with how things are set up.  The school is unhappy she's missing school on Thursdays she has a IEP and it can be worked around she gets her services at school on other days. If my kid falls behind in Kindergarten isn’t not my doing  it's due to their failure to comply with IEP standards. 
My kid has a lot going on a lot more then the school cares about. My kid has a lot of health issues and I am staying on top of it all.