by Sarah | Feb 14, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), PICC, Special Needs
She is our challenge.
Defiant and fiery – but so easily turns on the charm with her doe eyes and a smile that you find yourself fighting HARD to keep your smile. She’s cute as a button, and the little snot knows it too.
Her whole life she’s looked her challenges in the eye and laughed.
Torticollis? “Puh…watch me straighten my head out”
Hypotonia? “Pshaw…you say I won’t walk until later? Watch me and my crazy crooked gate at 12 months. (And just wait, I’ll run at 15 months).”
CF? “Ha! I got this…”
And she (mostly) has for six years now.
CF? “I told you…I got this…”
But she doesn’t.
Something is falling behind.
It could be a tough infection that’s skillfully hidden from the throat swab.
Or maybe her “poor” weight gain is exacerbating her CF.
Either way, she’s not maintaining weight. In fact, she lost this time.
Worse, her lung functions & saturation levels do not make her pulmonologist happy.
And now the challenger of rules and attitudes and restrictions is going to be challenged again.
Tests.
A Chest CT.
A bronchoscopy.
We’re going to get results quickly. By the end of the month we should know what we’re facing next.
Maybe IV antibiotics.
Maybe a g-tube.
Maybe both.
Doc says CF is more aggressive in girls.
So Doc is more aggressive toward it in girls.
Doc sat on this concern for almost a year.
Watching.
Waiting.
Believing it would improve – that K would knock it out of the park.
And she almost did – back in December we were sure trouble had passed.
But trouble came back.
Now is where life gets interesting.
Where we go on a strong offensive.
Time to once again laugh in the face of this challenge.
Whatever it ends up being.
First step.
Tests.
Answers.
Then we fight.
by Sarah | Sep 27, 2012 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
[flickr id=”8012257268″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Since birth the girls have been tiny. Hell, all my kids rock the bottom of the growth chart. Always. It’s in their genes. Up until 3 kids & a hysterectomy totally made my body go haywire I had insane metabolism. I remember hours spent in my pediatrician/allergists office playing with the toys he had on display while he discussed my growth chart (and how I was well below 0%tile) with my mom.
It’s a familiar theme.
One that in standard circumstances is a concern, but not panic inducing.
We eat.’
Tons of food.
We just don’t gain.
Metabolism rocks until it actually works against us. And trust me, as a teenager being asked if you’re anorexic when you eat like a horse is NOT fun. It really sucks.
But this goes beyond personal suckage.
When you combine Cystic Fibrosis with the words Failure to Thrive.
You get a heap of shit-panic-stuff-the-kids-faces-until-they-can’t-eat-any-more to deal with.
Back in June both my CF kids rocked the weight chart. For the first time ever the nutritionist said “we dont’ have anything to worry about here, keep doing what you’re doing. They look great.”
For the first time in her entire life Kennedy looked AMAZING. In the 10th%ile for BMI 10th! Dude, in this family that is some serious awesomeness. Worth celebrating.
Now, just 3 months later we’ve stalled. Flatlined. Kennedy gained almost nothing in the past 3 months. Her BMI is back at the bottom, in below the 5th%ile. Amazing how fast the growth chart swoops up to wipe away previous progress.
Again, in an average situation we’d not panic. But now we have 2 months to get meat on her bones.
2 months. Make sure at school she’s allowed extra snacks, extra time at lunch to finish. whatever it takes.
If we don’t put meat on her bones, they put a g-tube in her belly.
In a society where everything is marketed to keep obesity at bay.
I have to find ways to put weight ON my kids. Lots of it.
So that we can avoid the g-tube. The g-tube is not welcome here.
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 | 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 | Nov 4, 2009 | All About Molly, Autism, Failure to Thrive (FTT), Russell-Silver Syndrome, SID, Therapy
Last year I was afraid to try again.
Five months ago I took the leap.
Four months ago I was afraid to hope, but felt it creeping in.
Today was the big day. Technically it was the FIRST of TWO big days. We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.
I got up and the crack-of-dawn o’clock and hopped in the shower. I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car. Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city. We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.
And we waited. and waited. and waited. 30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.
It was worth the wait. It was worth the 4 months it took to get into her office to even see her. It was worth the hour wait. Why?
For an hour and a half – a FULL 90 minutes – she sat in that room. She never left. She sat there. She listened. She talked. She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.
She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.
We have confirmations, we have suggestions…we are feeling hope.
I go back on Monday with Angel. At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today. Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope. The adults.
Do we now have all the answers? Heavens, no. But this doctor is helping us define a path. For each girl, individually. She is listening to us.
And that…that is the most wonderful thing in the world.
by Sarah | Oct 11, 2008 | All About Molly, Failure to Thrive (FTT), GERD, Russell-Silver Syndrome
Yesterday we covered Riley’s relatively normal pregnancy and childbirth. As I said then; for the first three months everything went smooth – except that she had to sleep propped up in her carseat. She would not sleep lying down at all. Ever.
At three months old, I went back to work. I took a part time evening job waitressing at Bob Evans. The first week of work, things got crazy at home. I would leave and Riley would scream all night until almost 10PM. This was beyond colic, this was intense, pained screaming. Archie blamed it on my return to work the first couple of nights…but then he told me something was wrong.
Archie’s instincts have a way of being right. So, when I had to leave work early (in my first week) to come home because she was so horribly bad off, we determined that we’d call the pediatrician. We were told that if it didn’t improve to make a sick appointment in the morning (it was a Saturday).Â
The next morning we called and made the sick appointment, not wanting to wait until Monday. We took her in and learned that she’d flatlined in her weight gain. In the month since her previous appointment she’d only gained about 3oz.Â
Listening to our descriptions of what was happening the ped suggested that it was likely GERD (reflux), and perscribed Zantac. He told us to try giving her some formula after breastfeeding to weigh down what she was eating (a directive I regret following…but that’s another story). Then he scheduled some tests for us to get a confirmation of the diagnosis.
The next week we were at the children’s hospital with her in the X-ray department having a fluoroscopy performed. I was standing there watching as she swallowed the barium right up. I watched it go down, and stared in shock when it shot back up VERY quick, stopping at her throat before going back down and shooting back up again.
Our diagnosis of silent reflux confirmed, we followed another of the doctor’s directives that I regret….adding cereal to the formula we gave her.Â
Over the next few weeks she went in for weight checks constantly, but her weight gain didn’t rebound. So, under my (supposedly) BF supportive docs suggestion I pumped and switched exclusively to formula w/ cereal added. He said that we would get back to BFing once her weight came back on an even keel.
But the weight never came back, and neither did the breast feeding. Despite the treatments for GERD working in other ways (she would lay down to sleep, the screaming stopped)…her weight couldn’t seem to come back where it was supposed to be.
Eventually it got to the point where her weight was in the -25%. She was at least a pound beneath the lowest line on the growth charts, and we had no idea what to do about it, where to go next.  She was one year old and weighed 15lbs to her 29inches. She was a beanpole – skin and bones. Her hair was thin and practically non-existent.
It was around this time that we ended up switching pediatricians for many reasons. With the new pediatrician came a new look into the weight issues Riley was having. A pair of fresh eyes that would help us try to find an answer.
In came Dr. S. She has been our joy, our savior, and just the best damn pediatrician ever. She started the two year search for answers…
*******
I’ll continue on Monday with the first stage of our search…from bloodwork, to the specialist and our introduction to Early Intervention!
She is our challenge.
