The last time Blythe received vaccinations, she was 5 months old.
Her body reacted so severely, so horribly – she has never been the same. Her pediatric allergist has confirmed that her food allergies were triggered by those vaccinations, and she continues to avoid all immunizations based on his recommendation.
However.
We are discussing a plan to immunize Blythe against H1N1.
There are risks associated with administering the vaccination, yes, including the (remote) possibility of developing Guillain-Barre Syndrome. But based on her medical history, between her asthma and compromised immune system, she is at severe risk of developing what the medical community likes to call “complications” if she were to contract H1N1.
And so we try to decide between:
a factor we can control, which would be to administer the vaccination for H1N1 in her pediatric allergist’s office, with a plan in place, of course, should she have a reaction. I would plan to stay home with her for five days following the immunization, to give her system time to recoup;
~or~
a factor we cannot control, which would be to take our chances and hope she doesn’t contract H1N1 – or, if she were to be exposed, hope beyond all hope that she wouldn’t have any complications.
Go ahead and read between the lines with that word: complications.
I have. My heart skips a beat every time I hear about another child developing complications from H1N1, most of whom have pre-existing conditions. Exactly like Blythe. Many of those parents have lost their children to complications. That sentence, alone, terrifies me beyond comprehension.
It’s a difficult decision to make, one I wish I didn’t have to make, but such is life.
Sometimes, choosing the lesser of two evils just has to be good enough to get us through the night.
Category: Special Needs
Categories
Findings and Failures
I’ve been immersed in information.
Sensory Processing Disorder, Obsessive Compulsive Disorder, recommended therapies, parenting styles for special needs children, how to handle highly sensitive kids, the best route to social integration.
I’m trying so hard to remain positive. The truth of the matter is, Blythe is already improving, thanks to her wonderful, amazing, -insert a million positive adjectives here- therapist. Last week she touched a feather boa! Touched it! Willingly! I can’t tell you what a huge step that is for her.
I have so much hope for the future.
And yet, I’m also angry. Resentful, even.
Blythe has a lump on her head. A lump I noticed when she was about 3 months of age and pointed out to her pediatrician – the same doctor who blatantly ignored Blythe’s food allergies – the one assigned to us by the (expletive) HMO we had. She told me it wasn’t a lump, it just felt like one because she had a flat spot in front of it. She suggested we get a sleep positioner and encourage tummy time.
Ok. Done.
She was wrong. It’s a lump of Cerebrospinal Fluid, located between her skull and her scalp. It’s the reason she won’t let us touch her head, why she cries when I attempt to brush her hair, why she screams when I reach for the shampoo bottle. It’s the reason for a lot of things.
I’m angry because that (expletive) HMO, and that pediatrician failed my daughter. Repeatedly FAILED.
And she has SUFFERED because of those failures. Her food allergies, her gastro-intestinal problems, the LUMP ON HER HEAD.
FAIL, FAIL, FAIL.
Until two weeks ago, Blythe had only slept through the night a handful of times. Most nights, she’d wake up crying at least twice, but sometimes four or five times. That’s over 2 years of horrible sleep, for both of us.
Since we’ve started the physical therapy for her lump and her upper GI tract (daily massage) she has only woken up crying once. Two weeks worth of amazing, wonderful, sleep. Oh, the joy. But that’s sleep we could have been getting a long time ago if only the people we trusted to treat our daughter hadn’t failed her. FAILED!
My child has suffered through what I can only assume are terrible headaches and belly pain, almost every night of her life.
My baby. Suffered. Almost every night of her life.
I would be lying if I didn’t admit that I feel as though I’ve failed her, too. But I am not a medical professional, I am a mother just trying to help her daughter to be well. Is that so much to ask?
With all this talk of health care reform, I don’t know what the future holds. What I do know is, people deserve decent care from their doctors. That (expletive) HMO we belonged to was great for routine care. But for someone with special needs?
Failure, ignorance, and a horrible attitude.
I begged them to help me find out what was wrong with my baby. We saw every available doctor in the facility, trying to find someone who could tell us something. They would look at her chart and confirm the previous doctor’s diagnosis, sometimes without even looking at Blythe.
They wouldn’t even look at her.
I don’t care how cheap it is, I will never entrust my family’s care to that kind of organization, ever again. I will pay the $1000 per month health insurance, even if I have to sell everything I own, because my daughter deserves real help.
No one should be made to suffer because of lack of decent health care.
Especially not my sweet little girl. 
Categories
Special
I have a child with Special Needs.
There. I said it.
I hate the images that term conjures up in my head.
Visions of her sitting in a classroom, separate from her peers, an aide by her side.
Although, with the amazing therapist she’s working with, I truly hope she’ll be able to integrate seamlessly with her schoolmates when the time comes.
Last week, Blythe had her first therapy appointment for her OCD. While we were there, the psych also tested Blythe’s ability to tolerate sensory changes.
The results were not so good, although not entirely unexpected.
Sensory Processing Disorder.
Another disorder. Another ailment to add to her list. Another hurdle for her to overcome. It’s not as if she didn’t have it before, it just didn’t have a name.
Now, we have an action plan. The therapies for SPD and OCD are similar enough that they can be combined.
There are also things we can do at home. We’re supposed to push her limits just until she starts to get uncomfortable, and then back off.
– We’re to have her ride on her daddy’s shoulders every evening, and then reward her with a popsicle.
– We’re to rub her tummy.
– We’re to play “shampoo” on her head with a puppet.
– We’re to explore touching new textures and fabrics.
– We’re to talk about how they feel to us, and encourage her to tell us how they feel to her.
I’m excited that we have so many treatment options. But saddened. I can’t help it.
She has Special Needs, but she is just my beautiful, sweet, charming baby girl.