by Sarah | Dec 21, 2010 | All About Denver, Crap, Cystic Fibrosis
Yesterday I told you about Angel and where we were with her.
Today it’s Brandon’s turn. He also had an appointment yesterday. One meant to look further into his abnormal test results. His initial appointment with the pulmonologist.
He was examined, lungs sounded clear.
The pulmonologist said that there have been studies that have been coming out that are showing that sometimes carriers of the CF gene can have low abnormal readings and just have more sinus symptoms, etc.
It was decided that instead of a sweat test, we would run full genotypes on both of the kids. To determine what genetic abnormalities brought on these strains. While Angel was being admitted, Brandon was sent for blood work and x-rays.
We felt satisfied with the explanation. Hopeful.
But no official results for a month.
Then, once things were settling down in our insane day…I got a phone call. The Fellow that had assisted our pulm said that he’d forgotten to call earlier.
It was about Brandon’s x-rays.
“The x-rays are abnormal. They appear to be CF in nature – but this is not enough to definitively call it yet. We still have to wait on the genotype results – which will be in January.”
So we still don’t know. We’re still waiting.
It might not be.
But it very well could be.
Another month of waiting.
My life has been cut up into months. Never ending. One month more.
One month.
by Sarah | Dec 13, 2010 | All About Denver, All About Kennedy, Crap, Cystic Fibrosis
Sometimes it’s easy to ignore it all. To push aside the stress, the fear, the worry.
“The appointment is a month away,” you tell yourself. You think there’s no point in stressing now.
After all there’s not a damn thing you can do.
And things go smooth. You almost forget.
Then the moment happens.
Out of the blue you remember what you tried to forget. A reminder phone call for an appointment. A simple glance at the calendar.
And all the fear and stress you’ve shoved aside checks you into the boards rougher than any hockey player.
***
One week from today there are two big doctor’s appointments. Both on the same day. Both with the same doctor.
**
Angel will have her functions checked again. If she doesn’t bring her numbers up, our Christmas may be spent in the hospital. We will also be discussing having a full genotype run on her to determine her exact CF gene combo (as the original bloodwork did not turn up her genomes in the ‘standard’ for CF).
**
Brandon is also meeting the pulmonologist for the first time. He will have another sweat chloride test run (if Angel’s evolution is any indication 2+ tests = diagnosis). He will have blood work run (possibly a genotype for him as well). The doc will discuss his history and determine what other testing he needs.
**
I don’t know what’s going to happen.
I try to focus instead on keeping insanely busy for the holidays.
Then it hits.
One week from this minute I may have 2 CF kids instead of 1.
Or not.
I may be trying to figure out if the genotypes will be covered by insurance and if not, how to afford them.
There’s a lot of unknowns. I hate unknowns.
I don’t know how to help a grown child that’s always been healthy come to grips with a CF diagnosis.
Angel, well, she’s growing up with it…it’s already normal for her. Brandon grew up without major issues.
I don’t want to jump the gun…
But I can’t erase the fear.
by Sarah | Dec 3, 2010 | All About Denver, All About Erik, All About Kennedy, All About Molly, Fatherhood Fridays
The holidays are always hard on me. I wasn’t the happiest or sunniest child, and that has carried over to adulthood. It always felt as if they snuck up and hit me in the back of the head, but then didn’t run away but stayed to continue doing it until February or March. There is some SAD to it, mixed with my own general depression/anxiety/obsessive-compulsive traits. Having kids has made it a lot better and I enjoy our Christmases together. As a parent, one of my biggest struggles has been to be upbeat and excited about the holidays throughout the year. Each year, I persevere, yet feel as if I leave too much for my wife to do. Sometimes it’s the way duties are separated in the household, each having mostly consistent roles and chores to be done. But nothing is ever written in stone.
Sadie is a SAHM, so most of the household duties fall to her; like dishes, laundry, cleaning, & cooking. I will occasionally do some of those, but never cooking(I’m a horrible cook). I usually take care of maintenance on the house & cars, do yard work, and of course, go to work daily to support all of us.
But when it comes to administering to the kids needs, physically and emotionally, both of us handle it together. Sadie is a bit more of a nurturer than I, but there are certain situations that I am better suited to address. And as for Sadie and myself, we have mostly balanced each other out well over the years. When I am struggling, she is able to keep from bottoming out. And when she is stressed past the limit, I am able to help her back to even ground.
What is hard about this year, and we try not to focus on the negative, is that our kids are having struggles with things we can’t help them with. We’re both still shell-shocked about Brandon’s preliminary diagnosis of CF, the reality is settling on us slowly, heavily. It was just so out of the blue, we thought to have him tested, but knew that nothing would come of it. I blame myself, but most parents do when something goes wrong for their kids. I know Sadie blames herself too, just a natural reaction. He is still getting high grades, wants to continue sports in the spring, and loves Boy Scout campouts. We think he is happy, or at least as happy as a twelve year old can express.
Angel having complications with her CF is not unexpected, but still is unsettling. How her function can go up and down so fast is scary, and makes us wonder if we’re not watching her close enough. Now she may have strep, although I don’t know the full ramifications of this yet. She gives us no symptoms or complaints until she is already well into sickness. However, she still has the brightest smiles and chatters about everything constantly. She can be read like an open book, but a book that you enjoy so much, you never want to put it down.
Riley is,…..well….we love Riley. As Sadie has posted, she has advanced and regressed at the same time. Riley is a whirlwind at home; usually blond hair flying behind her, fighting with and screaming at her sister, and talking so fast you can’t make anything out. In school, the reports are all saying that she is remaining on task better and learning LOTS of things. Infrequently at home, Riley withdraws into herself and just seems to vacate her body. This is usually when she is peaceful at home(not often). But she is slowly coming around to talking with us(REAL CONVERSATION MATERIAL). And she can be so loving sometimes, that her issues fade into the background.
I’m not saying that we have any more to deal with than any other parent. I’m just saying it’s tough, tough to be everything all the time. I have more respect now for my parents than I ever did before. Being a parent of children of special needs children is a hard job, but I have a feeling it won’t be the hardest thing I’ll ever do. That will be when they grow up and leave their mother and me.
I guess all I am really saying is love your kids. Love their strengths. Love their weaknesses. Love them as much as you can. Special needs or not, we are the lucky ones. Our children are alive and fighting, and we are in there fighting even harder along with them.
Enjoy your holidays!
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 17, 2010 | All About Denver
He was the center of my world.
When he was born it was just the two of us against the world. A single mom and her beautiful, cheerful, perfect little boy.
He did everything he was supposed to…when he was supposed to. Goals were met in perfect ‘according to the books’ timing. In an eerie fashion, he followed the clothing sizes exactly…he was in 0-3 mo clothes until he was 4 months old, and then until 7 months for the 4-6, etc and so on.
He was rarely sick. The only problem we had with him was his BM’s….but that self-corrected at the age of 3 and so potty training was complete.
Then Archie came along and became the Daddy. After a period of some rough adjustment typical to most blended families, everything started to smooth out. Our family unit was settled into a nice routine.
Archie & I tried to have a child for a year to no avail. So we accepted that Brandon would be our one & only child. We were good with that. We were happy with that.
SURPRISE!
I was pregnant. Riley was added to the mix. And she started having troubles, and started to slip away. And then…
SURPRISE (Again)!!!
I was VERY pregnant, six months along with Angel. And she was added to the mix, and within a year HER issues grew and became severe and intense.
Somehow the ‘perfection’ was lost behind the struggles. Coasting along under our radar. Good grades, quiet, stuck in the background. relegated to the ‘neurotypical’ ‘doesn’t need as much of our help’.
I’m not proud of it, but it’s true.
Sometimes I wonder just how much he hates us for the place he’d ended up in our family. From being the center of my universe to the background.
In the past six months we’ve been working on this more. Brandon shares my love of photography, so we share that. We’ve cheered on his Cross Country, his Boy Scouts accomplishments (he’s a patrol leader now!), and his grades (straight A’s!! WOOHOO)…
Tomorrow he goes in for something that’s gone by the wayside for 3.5 years.
When Angel was diagnosed w/ CF it was recommended that all of our kids get tested. We immediately got Riley in and she was cleared with flying colors…but as always Brandon went by the wayside. Getting him out of school was just such a hassle…and since he had a different biological father it didn’t seem as important.
Until he came down with his 3rd case of walking pneumonia in 3 years, not to mention the bronchitis he had a couple years ago…and the fact that his asthma is pretty darn bad…and remembering that 3 year span after he was born with the BM issues (yup, when/if he reads this he will strangle me)…
It suddenly hit me that we never tested him. And it became imperative that we DO test him.
Luck was on my side since they had an opening this week. I don’t have to worry for ages. By this time tomorrow I’ll know.
If we have 2 CF babies.
If my casual dismissal was too much. His regularity made me expect him to be fine, perfect as always.
So for now I worry. I try not to blame myself without just cause. By this time tomorrow it may be a different story…
No matter what the outcome, he will not be the forgotten any longer. I just hope it’s not too late.
by Sarah | Nov 6, 2010 | All About Denver
Straight A’s.
Six classes. All A’s.
101% in Pre-Algebra.
Interested in photography.
Finished Cross Country, possibly looking toward Track.
In Boy Scouts.
Almost 13.
He’s growing up.
Far too fast.
Far too far.
Yesterday I told you about Angel and where we were with her.
