by Sarah | Sep 18, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
The hospital the kids go to for their CF is a teaching hospital. It always has been.
There have been many times we’ve gone to clinic and met new residents or fellows that were learning the craft from our top-notch pulmonologist.
Some don’t stick around for a while, others are around for at least a year.
The changing faces can get confusing when you’re in a long-term treatment plan like we are (or are terrible with names like I am).
When you’re in the hospital there are some definite positives – and definite negatives.
Positive – you have a team of doctors working your case. You know you’re getting the best care and a variety of input on your treatment.
Negative – you have a team of doctors working your case. Every morning each member of that team comes in to check breath sounds. Not all together to get it done once…nope, one by one over the course of an hour.
Positive – There are more nurses and therapists working your treatments and procedures.
Negative – sometimes the room is overcrowded with people each dedicated to your care.
This hospital is the best place for care. I know the people care about my child and making him healthy.
I know that there are many people working his case.
But it’s still overwhelming and frightening.
by Sarah | Sep 16, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
320 days.
Not even a full year.
320 days ago Denver was admitted to the hospital for diminished lung sounds and functions. He got sick in two seconds flat, and was in the hospital 2 days later. They wanted to keep him for a couple of weeks, but he was able to go home after a week. Then stayed on antibiotics for a month.
Back in the spring he had a short bout of illness that was treated with antibiotics.
A month ago he got sick again.
It wasn’t too bad, his lungs sounded clear. He was put on oral antibiotics for 2 weeks.
Things improved…
For a time…
Until they got worse.
Earlier this week the occasional low grade fever crept back up. Lucky for him, he had a CF Clinic appointment. The pulm put him on another round of oral antibiotics – a larger dose over three weeks again. We thought that would be it.
But he felt poorly enough to skip two Cross Country practices, which meant not running in the meet on Saturday.
I should have known then.
I didn’t.
Saturday night, after having been on antibiotics for 48 hours, Denver came to me. Being the teenager he is, he didn’t say much, just that he was coughing and it hurt when he coughed. Plus, he hadn’t been coughing before.
He didn’t verbalize how much it hurt, but I could see it all over his face.
The pain.
We put a call into the on-call.
We were given a night’s reprieve based on how he felt, and were told that unless he gets worse, we could call back in the AM and we’d have a bed ready for us when we did.
And so at 7AM this morning we hustled on in.
Got him admitted.
Tried to work out details with the kids and our one vehicle and making sure the kid and I have all we need here to make it through a week.
At least.
I told him I didn’t want to be here again this year.
Contrary teenagers don’t listen.
by Sarah | Sep 13, 2013 | All About Home, All About Me, All of Us, Holidays
It’s that time of year.
Can you believe it?
102 days until Christmas.
I started some minor Christmas shopping recently.
But what I’m most focused on is what happens right after Thanksgiving for me.
Cookie time!!
Every year at this time I start making my list – the ultimate list of cookies & candies to be made. This year, since I have a job, I’ll have to make more than usual for sharing.
Always on the list, of course, is my Ultimate Christmas Cookie Cutout Recipe. I’ve made those every year for 3+ years, and they are so good, they remain on the list without fail.
I also make poor man’s toffee every year (easy as pie), and some sort of bark (I’ve done Oreo and white chocolate cranberry before).
From there I never know. Depends on what I find on pinterest, or in magazines.
I’ve got all my recipes gathered…but do you have a favorite you can direct me toward? I’m always open to suggestions!
by Sarah | Sep 11, 2013 | All About Me, Story of Me
I posted this last year and the year before at this time. I’m re-posting it. I will always repost it every year at this time…
I know what today is. I know what it means to our country. I remember every detail of 2001 in vivid detail…but since before 2001, this date has been difficult for me, for my family…in 1996 my family’s core was lost, the heart of us…my grandfather…so my post on 9/11 is for him. Oh, and at surface glance I hate this picture of me, but then I see the pure joy on my face dancing with my grandfather and aesthetics be damned, it’s my favorite picture.
It was his birthday. I was young and a very short kid…and he was TALL. I remember watching him put our coats in the closet and staring up, up, up at him and asking, “How tall are you?” With his sparkling eyes and laugh he informed me that he was over 6′. My eyes grew wide, and all I could say was, “But you’re so close to the ceiling! If you have ANY more birthdays you’ll go right through!”
His chair sat by the front door and the minute he sat the race was on – who would get the privilege of sitting on his lap, carrying on as deep a conversation as a child was capable of? Who would get to play with his round pot belly, and listen to his laughter?
He worked for GM and he was proud of it, and so were we.
When I close my eyes I can still smell his pipe and see the pipe carousel on his dresser. I can smell the cigarettes that he and grandma smoked.
I remember that after he retired he would watch soap operas during lunch.
And I remember the weddings – when my cousin and I would trade off and share him for the dance. “Grampa” by the Judds.
I remember his smile.
I remember his belly.
I remember the strength that he always carried in his soul and body.
I remember the pain that shot through my heart at the word…”cancer”. Once it was uttered it was less than a year. 10 months.
I remember the first time I saw him in the hospital-and how I had to run from the room because it made me physically ill to see my big strong grandfather lying in a bed weak and hooked up to tubes.
I remember his fight.
I remember when it was acknowledged in our hearts that the time to fight was over.
I remember how he held on – hours past when we thought we would lose him – because he would not let go until he’d gotten to hear the good-bye of all of his grandchildren, and my brother had been in surgery for his shattered wrist. Half an hour after the final phone call, he was gone.
I remember the sound of the tennis balls scattering across the hallway when my professor’s assistant walked up asking if she knew where I was…and all I could do was run to my car to get home as soon as I could.
From there it’s a blur…a long car ride from NC to NY. The arrangements. The funeral home. The droves of people I didn’t know, but who all knew him, overflowing the room.
The pain has lessened, resorted to a memory. For the most part I remember the love, the good things, the joy. But on this day every year the pain comes back to the forefront.
The pain seems so much stronger now that Grandma has gone to join him. Refreshed and renewed. Now they are together forever, but they will always be here in our hearts.
We love you still, and will always love you, Grampa.
by Sarah | Sep 5, 2013 | All About Learning, All About Molly, All of Us, Autism, IEP, Special Needs
Last year at this time I was frustrated, at turns livid, and tired of the fight.
Our call for the IEP meeting was later than it should have been. The struggle to acclimate Molly with her class and teacher was more tedious because we weren’t able to meet with her in a one-on-one setting until there was a problem.
This year I’ve already posted about our great head start by meeting with the teacher and her teacher actually reading last years IEP.
This week we had the IEP meeting.
The depth and scope of the IEP and their knowledge of Molly already, just a few short weeks into the school year impressed me. I don’t know if it’s because Indiana puts intense focus on testing and education once the kids are in 3rd grade, or because the 3-4th grade school** is just that much more on the ball…but not only did the IEP go smoothly, but they caught all of our concerns and needs before we even had to open our mouths.
Of course this deep attention means that for the first time we are facing the possibility of Molly going into the “resource room” for one particular subject, which we’ll know in the next six weeks.
But it also means that there will be accommodations for tests, independent work…for HER.
For the first time I don’t want to say “Our school system is amazing, unless you have a special needs student.” This year they didn’t drop the ball…they made a touchdown.
And I finally feel like I can relax.
*~*
**Our school system is different. There are only 4 schools: K-2, 3-4, 5-8 & High School.
by Sarah | Sep 3, 2013 | All About Denver, Cystic Fibrosis, Hospital, Special Needs, The Teenager
As I said a few days ago, Denver is taking a mass media class. His first assignment?
A video montage.
It could be about any subject he wanted, anything across the whole world.
He could have picked Star Trek & its many incarnations and his absolute love of them.
He didn’t.
He picked Cystic Fibrosis.
And this is his video (be aware of your volume, it’s a bit loud):
Music: “Breathe” by Nickelback
Images: Many from his or my camera, the Riley logo & CFF logos are gained from the interwebs.
The hospital the kids go to for their CF is a teaching hospital. It always has been.
