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.
 

16 comments:

  1. Aww. It's tough dealing with a special needs child, the medical system and the school system.

    Just know that your daughter is lucky to have you and you will be the most important influence in her life. It sounds as if she is lucky to have you.

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  2. Thank you, I appreciate the visit to my blog. I's a cruel system medical vs educational needs. My child has both world's meeting but the two world's can't seem to have a meeting of the minds with out frustrations on both ends. .

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  3. Wow it's so sad to read about your daughter's health issues, but she is really lucky to have you care for her and love you the way you do. I hope things get easier as time goes by.

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  4. This is a lot easier to deal with now then when she was so little.
    thank you for your comment I appreciate it.

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  5. I know it probably seemed extra stressful to have that happen at that time, but what a blessing to e surrounded by people who share your faith and would pray for you instantly.

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    1. yes extra comforting that's for sure perhaps why I wasn't scared.

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  6. I hate that you and Bella have to deal with all of this, but she is lucky to have a strong mom advocating for her. Hang in there and keep being her voice!

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  7. Her dad is pretty awesome I donT say enough about him on my blog but hes a trooper when Ive had enough hes ready to tackle school issues head on. Hes my support and body gaurd not for me but from me going at someone so insenstive. Lol thank you for the complment

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  8. Oh my goodness! I'm so sorry. I give so much credit to special needs parents, because you all are so strong. I can't imagine the things you have to go through. *hugs*

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    1. It's always one thing after another and you start to just accept things as it is what it is. Other people try to offer advice or try to help but usually it makes issues worst so we just go with the flow of it all. It sorts it self out at one point until the next thing comes along.

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  9. Thanks for a great and touching post; I can't even imagine how hard a day in a life of a parent with a special needs child could be. Thanks for sharing..have a blessed day

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    1. I will make a post about a day in the life at some point then you can get a small glimpse. Maybe I'll video tape a few moments lol

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  10. I can only imagine how difficult this is for you to deal with. <3 My heart is with you and your little girl. You are a super mom!

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    1. thank you there are many days where I don't feel so super or look so super but that's for another post lol

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  11. Wow, that is tough and I'm sure has to be scary especially not knowing what's causing it. I hope the doctors are able to get to the bottom of it and thankfully your daughter is blessed with a mom who is doing whatever needs to be done to help her through her medical challenges and try to find out what is causing them. Blessings to you....

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    1. Thank you. They say you don't get more then what you can handle I personally feel just because I can handle it don't mean I wanted to lol I want my kid to be able to get excited and do things and have fun with out having a question in my mind if she could handle things like camping.

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Amanda Ripsam