by Sarah | Nov 18, 2010 | All About Denver, Crap, Cystic Fibrosis
Yesterday I posted about it. About the nerves I’d be living through today. About how our ‘perfect’ boy was so perfect that he faded into the background in the complication of our girls chaotic needs and schedules.
Until today when he got his sweat test done.
The test went smooth, he sweat like a champ. She told me the results would be faxed over to my Doc’s at which point I stopped and raised my eyebrows in surprise. I asked why we wouldn’t have the call back number because our ped’s office closes at 4:30 (when the results are released).
The tech, who remembered us thanks to Angel’s seven sweat tests, said that when an outside doc confirms there is no phone call…it’s special to the pulmonology department. But, also because she knew us, she did us a favor…she put a note on to put his results into the system because she knew I’d worry after Angel.
We came home and the rest of the day I was pretty okay. Just a little anxious, but overall not bad.
Then Brandon walked in the door after school. 40 minutes before it was okay to call for the results.
The minute he walked in the door my heart twisted, leaping into my throat, pounding, shuddering.
I had forty minutes to wait.
Forty. Long. Minutes.
But I already knew.
But I tried to cling to hope.
Promptly at 4:30 I dialed the number. I entered his patient number. I prayed. I hoped.
“Please call our office at…”
I burst into tears.
I know that system well. If your results are negative, they say NEGATIVE. They don’t tell you to call.
After several minutes of panic I called the pediatricians office and in HUGE relief someone answered. I asked if they’d received the fax. The nurse got on the line, telling me that my ped was out of the office until Monday….BUT, since we’d already been through it with Angel, she told me the basic results.
On the CF scale, for sweat chloride levels, the “negative” numbers are 0-39PPM.
Brandon’s levels read at 42.
Low…but in the positive range.
Our regular pediatricians partner called me to fill me in further.
They aren’t calling it CF – because they can’t. With numbers that low we have to re-run the test (much to Brandon’s disappointment, the electrical current really bothered/stung him).
But we’re getting an appointment with Angel’s Pulmonologist.
There will be more tests.
Nothing is officially official.
But ‘Redefining Perfect’ just got even more complicated.
by Sarah | Nov 11, 2010 | Random
Jack Frost
His ice skates on.
Spikes.
Swirls.
Carved on glass, the landscape.
Jack Frost has arrived.
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*I know, I know. I’ve been totally MIA. As I said in my last post, this time of year is insane for me outside of writing. Plus, I just haven’t been inspired by the words or photos the past few weeks. Not the challenge creator’s faults (in either of the cases)…just if I’m not inspired immediately I am not taking the time to write. This week with this beautiful picture (by Laura, the creator of the photo poetry challenge) inspired me. The word for the 100 words has too…hopefully I end up with time to write it. Currently SWAMPED beyond belief!!
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Please head on over HERE and check out the rest of the entries. I’m certain they’re all fun and unique!!!
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by Sarah | Nov 10, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Lost. Shivering. Hazy moon is doing me no good.
My baby is sick.
And I didn’t even know it.
Today was Angel’s regular CF clinic appointment. Outside of our visit last month for a cough that proved to be nothing much, she’s had no symptoms. Her appetite has been great, no lethargy, no tiring easy.
I was expecting nothing.
Until we stepped into the room for her functions, and mother’s intuition kicked in again. From her first breath into the machine I knew. There was a problem. Her breath wasn’t spiking up as high as it usually did. Breath after breath was low. I got worried.
The Fellow came in and examined her and didn’t seem concerned outside of her very low functions. Then she went to get the big guns, the pulmonologist. First word out of the main doc’s mouth was x-rays.
What it came down to is once again we are on the edge. The precipice of what could happen. Our Angel has taken us to this precipice many times over the past year. We’ve been ‘threatened’ with hospital time if she doesn’t bring up functions, or one thing or another.
Every time she succeeds in beating the challenge.
Every time I spend a month worried that she won’t.
This time it’s one month again. Her functions must improve by December 15th or we may be seeing her first visit to the hospital at Christmas time.
For 3 years I’ve been sitting on the edge. Waiting for the first big illness. It hasn’t happened yet. I’m not wishing it on her, I’m not wishing it on us. I’m just tired of wondering when that shoe is going to drop. Figuring out how we will handle it. Worrying that we won’t manage.
I hate living like this.
I hate this illness.
I hate worrying that every little cold will be the big one.
I hate that my baby can be so sick and I didn’t even realize it.
I hate that her atypical form gave us three years of hope before dashing it with the help of Pseudomonas.
I hate having to force aside the fear and worry just to live each day with a bit of normalcy.
I hate the month to month.
I hate that for a few moments each day my absolute love for my baby is eclipsed by fear, worry and pain.
by Sarah | Nov 5, 2010 | Random
Because I haven’t time or mental capacity for anything more prophetic…you get random fragments of thought…
1. After my contact ripped last week, I finally replaced my glasses with a new pair of contacts today. I feel so much better.
2. Part of the reason I rushed out to get the contacts today is because I’m going to a party with a few of the wonderful, beautiful and friendly Indy Area Bloggers. I’m vain (and/or self-conscious) enough that I didn’t want to go out in my glasses. Well, that coupled with the fact that we’re playing Just Dance on the Wii and I couldn’t do that with my glasses on, or see the screen with them off. Yup, that’s my story and I’m sticking to it.
3. In one week I’ll have a dog. She’s a sweet, beautiful dog and we don’t have to keep her. My parents are going on a vacation and we’re dog-sitting. This will be the second time we’ve dog sat. She’s always a joy to have in our house. The girls love her.
4. Still making gifts for Christmas. It’s never ending…until it’s over.
5. The kids were off today for ‘teacher inservice’ because the trimester is ended (yes, tri-mester. school year is divided into threes instead of quarters. annoying). What’s really super annoying about this is that we had Fall Break 2 weeks ago and in 2 weeks in Thanksgiving. THIS day off is totally unnecessary.
6. Brandon has straight A’s (sort of…we’re working on the Science teacher…something happened and a grade wasn’t counted…hopefully I caught her before the day is over). If it’s not straight A’s, it’s all A’s and one B+. I’ll take it. Making it even better is his Pre-Algebra grade…a 101% A+. 101%!! That’s a grade I never saw…I got a lot of A’s, but never over 100!!
7. As of Monday he won’t be in band any longer, he’ll be in general music. A lack of interest from him coupled with the cost made it a decision that was necessary if not totally loved (he did have promise, after all).
8. In case you hadn’t noticed my button, I’m attempting to do NaBloPoMo this year. The OTHER (but no more Ordinary) Sarah asked who’d do it with her and I went and waved my hand…so if I don’t post she’ll laugh at me. And I just cant have that. 😉
9. Emily was coveting some fingerless gloves off Etsy, so I offered up some of my yarn stash and will be delivering these tonight:
They were so quick and easy to whip up, I’m very happy with them. I admit that a few years ago I was a determined-to-love-it knitter. I wanted to, I hated that I was ‘slow’…the patterns were so confusing.
In the past six months that’s all changed. I’ve been whipping things up left and right. A scarf that I started 3 years ago and gave up on as ‘too difficult’ is now complete and blocked. Some of my Christmas gifts are knit. I’ve gone from a determined-to-love-it knitter to totally obsessed. I WANT.YARN. GOOD.YARN. LOTS. My stash just isn’t ever going to be enough. Oh, and more needles…and…yes, I’m obsessed.
10. I’ve figured out that thanks to earned Gift Cards from Swagbucks and Opinion Outpost…and our reward zone credits every “thing” left to buy for Brandon will be bought for free. Beyond that we’ll be spending some for clothes, but the kids are done. Just one or two things left for nieces and nephews and we’re done…oh, and each other. But I’m pretty much done w/ hubby’s.
12. I’ve wasted too much time here today.
13. Last time I did this I didn’t get any response, but I had very few readers….so I’m going to try again. Totally stealing it from Sarah, but hey…anything to get through the month. Ask me any questions…I’m answering them all. What do you want to know about me???
by Sarah | Nov 3, 2010 | All About Denver, Crap
For 12 years he survived. All bones intact.
The worst he’d done was cracked his head open once or twice – not one stitch, not one drop of glue, had ever held his flesh together.
Then back in the spring he became a comedic sight. One finger broken on his left hand, two fingers sprained on his right. He couldn’t use either hand, doing schoolwork was a challenge. All of that because his buddy cracked him in the hands with a golf club (on accident). Still, that was minor. The ‘break’ in his finger was in the growth plate. It healed in short order.
This time he isn’t quite so fortunate – although still relatively lucky.
He went on his first serious Boy Scouts camping trip. They hiked for several hours (his pack was 22 pounds), and then would make camp for the night. He went with our neighbor Moe*, who is also one of the troop leaders.
That morning I had a bout of mothers’ intuition. For some reason the thought hit me probably 10 in the morning and my brain screamed at me, “Brandon is going to get hurt today.” I didn’t fully listen, brushed it aside and went about our business…but even Archie says I was “off” all day. It was a ‘sweats’ day all day…I was just ‘eh’.
Then at 9:30PM Archie’s phone rang. My heart stopped, and the second I hear Moe’s voice I was on my feet, rushing to get dressed. I knew something had happened. I didn’t know what or how or why, or even how I’d get where they were, but I was going.
I was talked down from my insanity and eventually (two hours later) Brandon was home. Since he was exhausted and the scouts had come “prepared” (it’s more than just a saying), he crashed and we went to the ER in the morning. A couple hours later we were home with a new brace and sling – because for some reason ER’s no longer cast fractures (even compound ones – luckily Brandon’s was not compound).
A “buckle” fracture of the radius and ulna, a little more severe on the radius (which explains why he can more his fingers better than his thumb). It should heal in about 6 weeks and his cast will come off in five.
But to me it’s a badge of honor for him. He’s always been a tentative boy, careful…and not a ‘man’s man’ type of boy. In the past year he’s started to grow and change and bit by bit he’s becoming more of a man. Cross Country, Scouts, are both steps toward becoming a man instead of the curly-haired boy I remember so well. This cast is a symbol of that change, of him stepping into a world of strength. His handling of the pain has been so much more than it ever has been in the past. He’s growing up. Now he’s got a physical reminder of his steps away from me.
by Sarah | Oct 16, 2010 | All About Me, Crap
Day 09 – Someone you didn’t want to let go, but just drifted
It was middle school. The bowels of Hell.
I hated my life. I had one friend. I hated the way I looked, dressed…my acne, my glasses. Just two years of torture and teasing by my former friends and classmates had sent my fragile self-esteem into a nose dive.
My brother was on college visits with my dad, leaving my mom and I to find something to do. She decided that visiting her good friend at their camper would be a great idea. “Besides,” she informed me. “David* has a cousin about your age.”
I was oh-too-thrilled with that prospect. If she was anything like David (who may be reading this and I’m sorry, but you used to be…well, you remember)…I wanted nothing to do with her. If she wasn’t – well, she’d want nothing to do with me.
And so it goes that I met Julie*.
When I first saw her I figured I was done for. There was no way anyone with those looks would want anything to do with me. She had that it factor. You know the one. The one that screamed ‘popular’. Blonde hair, blue eyes, built like a….well, you get the idea. A year younger than me, she was taller, and far prettier. Yup, she’d classify me as the nerd everyone else did. My weekend was going to suck.
But it didn’t.
And she wasn’t.
She became my best friend. Instead of staying at David’s family’s trailer with my mom, I stayed at Julie’s. We talked, we laughed.
She LIKED ME. For who I was. Not knowing anything about my life at school, she didn’t treat me like those that decided in 6th grade that I was uncool (before I got the nerd markers of acne and glasses, they must have been psychic).
I begged to go back the next weekend, and the next. I begged for a trailer – and we got one, and a seasonal site just a few weeks later right at my birthday. Julie and I were always staying at each others trailers, sleeping in the tent. Eating Doritos and drinking hot chocolate (yes, together. Sounds yummy, doesn’t it?). Staying up into the night, never once passing gas and laughing (really, EVER). Sneaking out to be with the boys in camp, goofing off with nothing but the light of the moon.
We were inseperable.
For 3 summers, into winters.
Then I moved.
We did really good for a couple more years. I’d always visit when I got back to New York. Then she started college, I moved again. My visits to NY became less frequent. Our phone calls dissipated. Then she moved to Florida.
Time and distance separated us for many years. Then she found me again. Called me. Updated me on her life. That she was expecting a baby. For a month or two the communication resumed and then faded again.
Now, through the wonder that is Facebook we’ve found each other again. But it’s not the same.
She was there for me at a very important point in my life. She will always be remembered as my best friend. She will always be counted as a best friend. I know that if we saw each other face-to-face again it would be like old times. That is the wonder of true friendship.
Knowing now that she’s much closer to me than Florida (she moved again), I hope to see her again sometime soon. To meet her child, to get close to her again.
I never wanted us to drift apart. Life had other plans.
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*Names have been changed. These people are all my friends on FB now, so they know who they are, but I never use real names without permission 😀
Yesterday I posted about it. About the nerves I’d be living through today. About how our ‘perfect’ boy was so perfect that he faded into the background in the complication of our girls chaotic needs and schedules.
