by Sarah | Nov 21, 2008 | All About Kennedy, Crap
And right now HER well-being is not good. Not Riley. Riley looks like nothing ever happened. She’s running and laughing and smiling with clear eyes and no sign of her previous pain.
Angel, on the other hand. First she developed the stink pink-eye. She was given drops…NOT antibiotics. And while I’m grateful that she no longer looks like this:
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She does look like this:
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And this (by ear):
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This does not rest easy on my soul. Not when she sounds gravelly…and her breathing is shallow. The pulm on call last night acted like I was just silly for calling in…but with a first thing this morning temp of 102 by ear…a runny nose and generally grumpy disposition…I worry. No, she’s not coughing…but I still worry…how soon will she? Since it’s Friday should I take her in to the ped and have them check her breath sounds? Should I sit on it? I’m treating with motrin and snuggling with her since she has the chills and shakes…but I don’t know how to call or when or if I should? After last night I feel like I’m over-reacting…but I worry…I always worry about my baby-girl.
(And I keep hearing the pulm’s final words before I left the office Wednesday. “With CF kids it’s real easy for this all to move to their chest.”)
ETA: I DID call the pediatrician. Angel will go in at 1:30 EST to have them do a cursory check of her lungs and get some antibiotics (which I am specifically asking for)
by Sarah | Nov 19, 2008 | All About Kennedy, All About Molly, Crap
Apparently my beautiful girl Riley, who likes to become non-verbal when distressed, became to distressed to tell me her ears hurt.
Apparently there was a severe double ear infection (again – this happened last year).
Apparently I waited too long to take her to the doctor.
Apparently waiting until eyes are draining green goop is far too long to wait.
Apparently waiting a long time on a bad ear infection can spread the infection to the eyes and cause pink eye.
Apparently that is EXACTLY what happened to Riley.
Apparently it is highly contagious (I sort of knew that already)
Apparently I wasn’t fast enough with the hand sanitizer.
Apparently Angel is now showing the signs of it.
Apparently I’ll be spending the next two weeks doling out doses of antibiotics to two toddlers.
by Sarah | Oct 28, 2008 | All About Family, All About Kennedy, All About Molly
In case you missed the news-flash…I was in Buffalo for six days with my kids – and no hubby. Gro-gram (my grandmother) kindly housed us at her place. She had two spare sleeping places – the couch (with a pull-out bed, but who needs that?), and the spare room fully equipped with a full size bed.
Brandon had the luxury of sleeping on the couch. The two girls and I got the spare room with the full size bed. Two toddlers, one of whom still normally sleeps in a crib…and me.  It ended up sort of like this:
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Riley…she was Stretch McGee…lying flat on her back on one of the pillows, long limbs flailed about the bed like she owned it…snoring away (such a sweet snore).
Angel was Snuggle Bug. She’d curl up her tiny little body next to Riley as they slept…and every morning I’d wake to find her twisted in the bed, snuggled against me.
I was left to cope with the remaining little bit of free space. The girls had taken the pillows, so I absconded with one of the little square pillows from the couch w/o much stuffing. One foot hanging off the end of the bed, sometimes both. I got kicked by Riley a few times…I swear the child is only 40″ long…but you put her in bed and she stretches out to twice that size.Â
Needless to say I didn’t get much sleep…but amazingly the sleep I did get was rather sound…especially in the morning when Angel would curl up against me…her little head tucked under my chin…and for an hour while we slept like that…nothing was uncomfortable about that bed.
by Sarah | Oct 16, 2008 | All About Kennedy
Sorry for being MIA the past couple of days. I was working my arse off to complete a group of purses for a mom in my playgroup. Today I come back, not with a continuation of the story of Riley…but what happens to be strong on my mind tonight…the land of Angel.
***
My Nana was a hypochondriac. She had 5 doctors that knew nothing about each other, that each perscribed her different medications. It killed her in the end, though her official death was listed as a heart attack. When I was younger and frequently getting sick my father said to em in a fit of annoyance, “You keep this up you’re going to end up like your grandmother – a hypochondriac.”
It was one of those moments that stick with you – and become your greatest fears. I never take pills/medicine because of this (and my extreme difficulty in swallowing them), I hardly EVER go to the doctor because of it. It has always taken me a lot to take my kids to the doctor.
Then the girls came along and I learned to be an advocate for them. I brought up all of my concerns with the doctor’s. I found a doctor that listened, that understood the challenges, and it bolstered my need to advocate for my girls. In the back of my head was always the concern that I’d gone one too many times to the ped with a concern. That she’d think I was Munchausen or something, but she was always understanding and took my concerns seriously.
But then it happened. The LOOK. At Angel’s 2 year checkup I brought up her extreme temper again (I had three months prior), and my beloved pediatrician gave me…The LOOK. It was full of doubt and the ‘you’re nuts’ factor as she said, “Are you sure it’s not just her being a two year old?”
My faith in my knowledge as a mother was shattered. The fear that I’d tucked safely away came rushing back with a vengeance. I once again fear mentioning anything to the doctor.
First, I want to get a second opinion on Angel from an orthopaedist. I was seriously uncomfortable with what the last one had to say, and the problem is not ‘correcting itself’ as he’d suggested. Watching her day to day increases my concern. But I can’t pick up that phone. Daily I think that I’ll call, I’ll get that appointment with a new ortho…but I can’t dial the number.
Second, I want to bring up a possible cause that I’d passed over briefly before and dismissed…but then Archie brought to me tonight.  It is not a happy diagnosis, and one that would likely be disqualified…but it’s a valid question…but I fear mentioning it to anyone on the medical profession. Fear that they would look at me as a person with far too much google-time.
I hate feeling like this. Like I need to be asking, but frozen with fear and self-doubt. Knowing, deep in my heart, that there is something more. Something else that explains everything…something THEY are missing.
by Sarah | Oct 9, 2008 | All About Kennedy, All About Molly
I have been MIA as I’ve tried to clean off my desk to find my sewing machine and then create a pattern and a purse from said-pattern. I did succeed and now have to make five more purses…but as I have a few days I can share this little story from tonight…
I had gone out to show off the purse to the playgroup-mom that ordered them to make sure she liked the design before I made all six. While I was there my phone rang – it was Archie from home. Immediately after a standard greeting and an “are you on your way home yet?” moment he tells me that Angel scared the daylights out of him tonight.Â
There is a Dora doll. Dora showed up in Riley’s easter basket a couple years ago and ha been passed on to Angel. On this Dora doll is a tag…a long tag. In the past two years the tag has been worn down and is a little threadbare, but still firmly attached.
Archie had settled in to watch a movie after I left, when suddenly he heard, “Daddy, help! Daddy help!” Angel was calling from her bedroom, so in the bedroom he went. He found her thumb swollen and dark purple.Â
She had laced her thumb into the tag and spun the Dora doll until the tag was wrapped up so tight, Archie couldnt’ figure out how to loosen it. He had to cut off the tag to free her!!Â
So after a stressed out mini rant, Archie concluded “She could’ve lost her thumb if she hadn’t called for me!!”Â
Ah, the drama of Mommy being gone….
**
On a separate note, Riley came home with a note on her daily report: “Riley’s nose has been running green!” Um, couldn’t they just say, “Please don’t bring her in tomorrow”? Would have been so much easier than me having to get up 7AM to call the school and say she’s not coming in…
by Sarah | Oct 3, 2008 | All About Kennedy, Hypotonia
What do you do when you don’t know what to do anymore?
When you tell yourself daily to call the doctor, to push for a second opinion…but you fear ‘the look’ you know will happen on the other end. The one that says, “You’re overreacting.”
When your child throws themselves into such an intense, self-injuring, shriekingly horrible fit that she is unable to pull herself out of it?
When the comfort you try to give her leads to pained cries – deep, gut-wrenching sobs filled with tears that tear at your heart – and you’ve never known what caused it?
When the two years of therapy have done nothing to help a problem that only seems to be getting worse, but no doctor seems to think that your fears are justified?
When you think there’s more wrong that they just haven’t gotten a fix on yet…but you have no clue where to start…and the one venue you can think of using could cause you to lose all support you currently receive – or at least have to have it re-evaluated?
When you are faced with watching your child – every day- struggle to be…anything?
Watching her struggle to be just like her sister, but unable to compete in an uneven battle?
When you see her grow tired every two hours, but have to force her to stay awake and still playing so that she will sleep when it’s actually appropriate?Â
When you see that the moment she has gotten tired all possible control she had weakens, and her feet turn in, and the clumsy begins, and the tantrums come quicker and stronger?
When you watch her destroy toys and property, without the faintest idea how to stop her?
When not even the trained psychologist is sure how to help with all of her issues?
When your own faith in your motherhood is tested and you doubt your own instincts on whether there is a problem or you’re being a hypochondriac?
You do the only thing you can do. You sit back. You watch her play, you give her hugs and kisses when she runs up to you. You find the amazement and wonder at her intelligence when she surprises you by showing it off. You see the happy in the smiles she grants you liberally between tantrums. You note the way she’s like you – dancing at every little bit of music, the way her toes point when she’s at rest, the cheeks, the smile, the crazy buck-teeth, the eyes.Â
You remember that you are her Mom. That in your heart you know the truth. You remember that your instincts ARE on, and fight for them, and for her.
You take a break, you revel in the love of your little angel…and you fight anew tomorrow to give her every bit of life, love, and help that she deserves.
