by Sarah | Feb 2, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis
For weeks the countdown to the next CF clinic appointment has been on. Angel and Brandon both had their blood drawn for the full genome sweep to determine their CF standing.
While yes, I’ve been in a panic about Brandon’s…
I’ve also been secretly worried about Angel’s. Despite everything, I wondered if it would actually come back positive.
Don’t get me wrong. I know everything we’ve been through. I remember the past three years clearly.
It’s because of that that I’ve been worried.
In case you don’t remember, our Journey to CF (Part 1, Part 2, Part 3) was not a clear, direct path. In fact, it wasn’t until May of 2010 and 1 positive test result that our highly experienced and dedicated, CF specialty, Pulmonary doctor said without a trace of doubt that this was CF.
So, in the back of my mind lingered that bit of doubt. Wondering, worrying what the test would show.
Tomorrow was supposed to be the day.
The city is covered in ice and the appointment has been CANCELED.
When I got the call I asked for the nurse to call me back. “Brandon is freaking out” was my excuse – but in truth, so am I.
They had to run Angel’s test first so they knew what to look for in Brandon’s. So….her results are in – his are NOT (oy).
In short, Angel has CF.
In length, the two defects that create her CF are VERY RARE. She’s a mutant of a gene mutation. She’s…unique. (we always knew that).
We don’t know the full extent of what this means for her. Or if it means anything at all beyond her having it.
We have to meet with the doctor for that.
So we’re back in a holding pattern. Our next scheduled appointment is the 23rd.
We’ll be looking for and hoping for answers for Brandon before then. The CF nurse is keeping an eye out for us. If I don’t hear anything by Wednesday of next week, they haven’t got them in. I’ll call again the following week to see. If they still don’t have anything, the next week will be our appt.
So…all we know now is that our little Angel is a weirdo. Unfortunately, this isn’t really news. (But it is a relief to have genetic confirmation that her strain is unusual, and we haven’t struggled to reach an answer that was false).
by Sarah | Jan 18, 2011 | All About Molly, Autism, Failure to Thrive (FTT)
Riley is almost six years old.
At last check, she weighed a tiny little 37 pounds to her almost 4′ frame. Which puts her BMI once again well below the growth chart.
Then…
She stopped eating.
We don’t know why.
Or how to stop it.
Her beautiful long platinum locks got thinner and thinner. Weak. Stringy.
Her already skinny frame is getting skinnier.
Legs long enough to fit into size 6.
Waist tiny enough to fit into 4T’s.
She won’t eat.
Unless it’s pancakes.
Mac & Cheese.
Hot Dogs.
It has gotten to the point where a peanut butter & jelly sandwich that has been asked for is snubbed.
Food.
Unappealing.
Whether it’s the texture.
Or the taste.
We’ll be spending the money for an appointment with the ped.
We’re reaching alarming levels.
Her autism is rearing its head more, her behavior unpredictable.
I’ve cut her hair in an attempt to make it appear thicker. It’s cute, but I miss the beautiful long locks.
I’ve made allowances and fed her outside of what we eat (a habit I’m sickened to start…the rule has ALWAYS been eat what’s in front of you). We’ve been giving her boxes of her sister’s Boost to make sure she gets her vitamins, minerals, and extra calories.
We’re worried about what this is going to mean for her in the near future.
But she can’t go on like this.
Neither can we.
by Sarah | Jan 12, 2011 | All About Kennedy, Cystic Fibrosis, Hospital
The hospital is only a memory.
The PICC line is gone, only a few scabs and red skin serve to remind us it was there.
A box of leftover saline syringes lingers in the kitchen.
Two more appointments in the coming month loom ahead.
But…
We are in ‘the clear’ as much as we can be.
Angel has resumed her regularly scheduled programming.
With a little bit more joy than before.
A few more crazy antics added to her repertoire.
The songs she makes up, I listen to the words now. She’s smart & clever & playful.
She responds to Dora, Diego, and Team Umizoomi with enthusiasm and joy. She sucks in all knowledge she can like a sponge, seeping off her her sisters growing roster of knowledge.
Her love for her Daddy has expanded and grown since the hospital, with random expressive “I love you’s” popping out so much more often than before. While she still gets mad at him, she snuggles with him more.
The light that has always been our most joyful, smiling baby has grown brighter.
Or maybe we are just taking in that light with greater gratitude than before.
Appreciating and savoring it more deeply.
She is our light.
She always has been.
Nothing can extinguish her.
She’s indomitable.
She’s….our shining Angel.
by Sarah | Dec 31, 2010 | All of Us, Community, Cystic Fibrosis, Hospital
In ll of my years online Archie has been frustrated. He wanted me to get “real” friends. People that I could see face to face, call on the phone (even though I have issues using the phone). That were flesh and blood before me, not who-knows-where across the internet.
Archie hates when I tell this, because he says he does know that the people are “real”…they just aren’t close physically. He knows how deep my friendship with Jess is, after all she’s the first one he called after my surgery, and on other occasions. He would just prefer that my ‘best’ friend live across the street (face it, wouldn’t we all like that).
ANYWAY. I’m getting off track on the point of this post. We were admitted, I tweeted about it and left it at that.
Within an hour, I had a message from the beautiful Emily. It said simply, “What do you need? Tell me what you need and I’ll make it happen.”
I have often talked about the Indianapolis Blogging Community and how wonderful it is. The parties in recent months have enhanced that fact.
But I had no idea what the sense of community in both the bloggers and in my own neighborhood would mean.
Casey came to the hospital loaded down with goodies that Emily had organized. A pillow pet was in there for Angel, as well as snacks from Casey & Emily, and Katy (her delectable goodies are pictured above) and Sarah and MrsBlonde.
So much that Archie and I just stared in awe & wonder at the gifts we’d been given. The support offered. Snacks, full meal dishes that only needed to be popped into the oven, among other things for which we’ll be eternally grateful.
To add to the amazing things these women pulled together for us, I came home to find our driveway cleared of snow thanks to neighbors, a small package in the mail from Michelle (another Indy Blogger), and neighbors that gathered mail and also put together small presents for our little one.
Archie and I have been so touched by the support and caring in our established (and newly established) communities, we are still moved to tears by it. I don’t think we could have made it through these past couple of weeks without these wonderful people that have touched our lives and our hearts.
IT had been many years since I have been established in such wonderful communities.
My heart is full with our blessings, even through the darkness that we’ve been moving through.
****
~Tomorrow comes the post about another lifesaver we had, rather by coincidence. It’s a post I’d been planning on writing with far more humor and tongue in cheek – but now it will be much more.
by Sarah | Dec 29, 2010 | All About Kennedy, Cystic Fibrosis, Hospital
One last post on the bad. Then tomorrow I will post on our joys & blessings.
Day 1 was pure chaos. We were admitting, doing x-rays, tests, getting settled. Shipping off other kids. Packing things at home.
Angel, for her part, was having a great time. The hospital was her “new home”. While she hated the IV, her mood was stellar. Cheerful. Excited. She didn’t care she was stuck in one (decent sized) room. There were new people in the super nice nurses and staff. She got to play with an iPad (she kicked butt on puzzles) while they were running tests. There was a TV that was ALWAYS on her shows. Games JUST for her. SHE was the star.
Archie & I?? Before our first sleepless night we were exhausted. On the uncomfortable couch in the room. With a child that doesn’t like to sleep in normal situations – much less with all this going on. Vitals being taken every 4 hours. Not to mention a heating/cooling system that is wonky and either too hot or too cold.
Strong. Boy, was my girl ever strong and brave. Faced almost every situation with a smile. Hated the IV – for about 12 hours, then didn’t care as long as you weren’t trying to take off the tape, or take out the IV. Hated the room that she was getting the PICC in…but then, don’t we all? It’s darn scary. Screamed in pain when they put in the anesthesia – but to be honest I might have a little when they put it in my hand – that stuff burns!! She was brave and strong, and charming and disarming. Everyone loved her.
I was weak. I had to run from the room when she started screaming before the anesthesia even touched her hand. I had to leave the room, or call in the morale team whenever they took blood from her PICC because I couldn’t watch, or listen to her cry.
I wanted to beg the doctors to let her stay in the hospital. Because I was scared of the PICC. Of a relapse at my incapable hands. Of popping “The Bubble.”
I only cried once – the day they put in her PICC – and only for a few minutes.
Maybe that’s the problem.
I’m still so exhausted. So worn down.
So is Archie.
We feel like we’ll never “Catch up” on the sleep lost (if there is such a thing)…or if we’ll ever be able to sleep right again.
We knew it was coming.
I wanted the “first time” out of the way…but I NEVER wanted the “first time” out of the way.
I need to cry.
I need to sleep.
I need to be able to go back to a time when I could pretend it still wasn’t real.
But I can never get that fantasy back.
by Sarah | Dec 28, 2010 | All About Erik, All About Kennedy, All About Me, Cystic Fibrosis, Hospital, PICC
There is no way I can handle this.
I’m not strong enough.
How horrible a Mom am I that I can’t help my own baby?
I’m so weak. I can’t even hold her hand when she’s screaming in pain and fear.
I ran from the room, bursting into tears.
How can they think I can do these meds at home?
We were on our way home. I was trembling in fear. We arrived home and Archie kicked into “Super Hubby” mode. Trying to do everything to make the transition run smooth for me. To ease my panic, despite his own level of it.
His attempts were valiant.
I was just not having much success coping.
The rest of the evening and night was a disaster. I was very short-tempered. So was wonder-hubs. All 3 kids were wired, over-stimulated, jealous, hyper, impatient. It was a mess.
Archie had to do her meds…and I got stuck having to hold & distract Angel – who was unhappy with the PICC line in general.
There was no way this was going to work. I went to bed un-satisfied, un-resolved, almost depressed.
The next morning the panic had subsided. I made myself to busy work – preparing for our Christmas Eve ‘party’ at my house. The neighbor had asked Archie’s help with something…and he was preparing to go right around medicine time.
While Archie took a shower, I stared down the meds.
I dug down deep and called over Angel.
I started the process.
I cleaned the line, and started the saline…and then the meds.
I had done it.
With minimal sensation of nausea…I had administered her medication into the PICC line.
And through it all, Angel hadn’t freaked once.
Maybe…just maybe…there was a way…
*********
Tomorrow, a little bit more of the ugly…how the others are handling Angel’s doses of attention…how we’re handling the schedule (not always so good)…and so on…
For weeks the countdown to the next CF clinic appointment has been on. Angel and Brandon both had their blood drawn for the full genome sweep to determine their CF standing.
