by Sarah | Jun 1, 2010 | All About Kennedy, Cystic Fibrosis
Three years ago we got the diagnosis, Cystic Fibrosis. The pulmonologist assured us that over the course of the next few years we were likely to have more difficulty from Angel’s “other issues” than we were from the CF.
She was right.
For three years we’ve avoided any serious medical ailments from her CF. One bout of croup is the worst we have suffered.
For three years it’s been a diagnosis. Nothing more.
Now it’s a reality.
On my last day in Buffalo the real world invaded. The pulmonologist called my cell phone. We had been in the week before for Angel’s yearly testing. Blood work was drawn, lung functions done, and a sputum culture.
The results of the sputum culture had come back. For the first time ever, Angel tested positive for Pseudomonas. We were already on Cipro (her lung functions have been on a steady decline & she’s been having some labored breathing)…we had TOBI added on (a $3000 drug, pre-insurance! *faints*), which is an actual inhaled antibiotic.
My baby is sick.
She runs and plays. She laughs and sings. But her body is slowing her down.
At night she rasps and wheezes. She’s now chained to her machines for an hour each morning and evening. Trying to fight this off so that she can run and play without getting so worn down so fast.
We let her run.
We let her play.
She needs it. WE need it.
Our baby is sick.
It’s no longer something that’s in the background. It’s staring us in the face and gnashing it’s teeth.
I’d come out fighting, but I’m worn down too. So instead I fight quietly. I pray to find my strength again so that I can be strong for her, for my family. Life has tossed me about lately, the phone call from the pulm was the last in a string of crapstorms swirling about me.
But then I see her face. Those huge brown eyes that have melted my heart from day 1.
That smile that manipulates my anger into a grin, even when I don’t want it to. The goofy playfulness that can turn the grumpiest grump into a grinning fool.
I know that she’s too little to know what her tiny body is trying to fight off. I know that she’d rather run and play then sit hooked up to machines and fed medicines. I know that it all makes her sad.
And that’s when I know. I’d give anything to keep that smile. That goofy grin. The annoying repeating chatter that fills my days (and sometimes my nights). The songs she makes up. The piercing shriek of a scream she emits that makes my ears bleed, but show that her fire is not gone out.
I will find my strength to fight this thing. The Mama Bear will emerge, and we will fight the now present danger of CF.
Diagnosis has become reality.
Now we brace ourselves for the fight. We will fight for every tomorrow we can get. Angel may be tiny – but she’s got a strength and joy inside unlike anything you’ve seen.
I believe that if anyone can win the battle against this disease it’s her.
And if my littlest, my tiny Angel-girl is strong enough – I sure as hell can be too.
by Sarah | Apr 7, 2010 | All About Kennedy, All About Molly
In two weeks it’s time for my Irish Twins birthdays. They’ll be five and four.
Riley is trying very hard to read, and Angel is doing her best to follow right behind.
Riley can write her own name (forward and backward, literally), and is figuring out how to write the numbers 1-10.
Angel is curious…about EVERYTHING. We cannot keep her out of anywhere from touching anything. She is the child that as you run through the store runs her fingers along the shelves and tries to touch everything she sees.
Riley is cautiously curious outside of the home and her comfort zones – but around people she knows is talkative and friendly.
They are each others best friends and worst enemies.
Technically I should be signing Riley up for Kindergarten based on her age. That doesn’t seem real. It seems like just yesterday that I was in the hospital watching them decide the new pope on TV while wondering when the pitocin was going to make labor actually hurt (didn’t take more than a few hours). Or just this morning that I walked the four miles to and from Dairy Queen to try to spark labor for Angel, and lamenting the fact that it failed (it didn’t – just took two hours to hit me).
The days of diapers are finally gone (almost – we still wear pullups at night).
The days of learning and growing and wonder at the world around them have arrived. They are curious and thirsting for knowledge – and I can’t wait to keep watching them learn.
I miss my babies. More than I imagined…
But I’m loving the excitement of my big girls and their big personalities.
by Sarah | Nov 11, 2009 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Hypotonia, SID, Speech, Therapy
Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis!
The short of it – we may never know what causes our little one to struggle. It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally.
However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs.
To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone. She again listened and heard all I had to say on everything we’ve been through the past couple of years with her. She gave advice and took a good look over her, just as she had with Riley.
Her solutions here were a little more complex, but not by much.
1. We are doing an MRI on her brain. Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this.
2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course.
Why are we doing these? Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s. She said that while it is likely just her early birth date, we should exhaust the remaining bit of question.
And onto the HOW’s…
1. Restarting Speech Therapy
2. Restarting Occupational Therapy
3. Having a psychological exam done to determine need for Behavioral Therapy
4. Returning to the Feeding specialist for monthly visits
5. Restarting Physical Therapy
All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues. Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say.
And that is where we stand now. Therapy, therapy…and more therapy. I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it.
by Sarah | Aug 20, 2009 | All About Kennedy, All About Me, All About Molly, Crap, Cystic Fibrosis
I spent the better part of the weekend (from Thursday to Sunday) sleeping. I was sick, sick, sick…and have just now started feeling better. The worst part of being sick was having two sickies with me (*thing 1 and thing 2*) that were just as miserable as I was.
Riley recovered fast, but it clung to my Angel like glue. The cough lingered and she was put on antibiotics (drugs…woohoo). She recovered a bit, but continued to cough. And cough. And cough – waking up at nights. It wasn’t continuous – just lingering. So, as luck would have it we had our regularly scheduled visit to the CF clinic yesterday. Her lung functions have gone down, so the pulm has extended and increased her antibiotics….and added steroids.
So after all of this, I’m finally back. Still keeping an eye on my baby – but I’m here! Sorry I was so MIA. Whateer this summer cold was made of, it kicked my ass!
And the Rock and Roll?
Well, it’s RIGHT HERE!!
by Sarah | Aug 13, 2009 | All About Kennedy
We are a full sick house today. It started last week with me having an upper respiratory infection. Just as I got better, Riley got the sniffles. Then yesterday I got them again. Runny nose, head congestion, a full blown head cold.
Today the part I always always fear happened.
Angel was congested when waking up. And unlike Riley and I – she was coughing.
We have been blessed (and damn lucky) that Angel has not yet suffered any serious illnesses since her CF diagnosis 2 years ago. That doesn’t stop the fear that grips you with every illness.
How fast this cold hit, the fact that she has a fever and is coughing worries me more than my own illness or Riley’s. She was fine when she went to bed last night, and this morning is not the same. Lethargy, grumpiness and a need to be on my lap all the time…it’s all causing me to worry before I should worry.
Once I knew there was a fever I did what I was supposed to. I’ve called the pulmonologist and spoken to a nurse. I’ve put her in her chest compression vest and done a run on the nebulizer. I’m waiting for word back from the doctor now.
I’m terrified of the Big One. The first time we end up so sick and in the hospital, her little lungs fighting harder than any of us to get rid of something. Every sniffle brings it back up, every cough tugs at my heart.
So in the mean time I’m in the steam room (the bathroom) trying to declog my own sinuses and the girls…because I’d like to be able to care for my baby without my own pain getting in the way.
by Sarah | Jul 14, 2009 | All About Kennedy, All About Molly, Crap
You know those sneaky roller coaster rides where you climb and climb every so slowly to the top and just as you crest, ready for the exhileration of the drop – it’s just a little bump? You have to wait another interminable second before the rush of the real drop? I’m stuck on a series of little bumps…waiting for the rush of the drop…
Every step forward with potty training is met with steps backward.
I’ve tried defending their actions, explaining them away…but I’m down to the last hair on my head, pulling each one out in frustration.
I can’t call them ‘accidents’ I know that they know what they’re doing…but do they? Despite the fact that they know where the potty is, how to go, they are no longer afraid of it…and have even used public toilets…they have yet to initiate a potty run.
I take that back – Angel did it ONCE, on father’s day.
I’m tired of washing sheets every day because they keep wetting the bed. I’m tired of asking them if they have to go and gettig a flat out ‘no’ – only to have them peeing on the ground two minutes later.
Is it a sensory issue? Or just stubborness? Or are they just not ready, despite being 3&4?!?
I don’t want to return to diapers…I don’t want that cost…but I don’t know how much more I can handle.
***
My apologies for the potty-roller coaster analogy…and for a post about potty-training…I’m just super frustrated right now.
Three years ago we got the diagnosis, Cystic Fibrosis. The pulmonologist assured us that over the course of the next few years we were likely to have more difficulty from Angel’s “other issues” than we were from the CF.
