by Sarah | Aug 6, 2013 | All About Learning, All About Molly, Autism, IEP, Special Needs
Molly is entering 3rd grade.
It’s hard to believe that my little girl is in 3rd, and the baby is going into 2nd.
They start school in just over a week.
8 days.
Since mid-July I’ve been bracing for the upcoming struggle and battle.
Behaviors at home have gotten out of control again.
Anticipation always worsens the load for her.
I began in July.
I knew that it was on her IEP, but the school has convenient ways of forgetting these things during summer break.
I called the school office in July.
Voice mail told me the office was closed until August 1st.
But then July 31st we get the first official email from the principal. So I reply. I remind her of the IEP, and that Molly is to meet her teacher in advance.
And so, last week, Molly met her teacher. I met her teacher and was able to give a few ‘heads up’.
The school year hasn’t started, but I’ve prepped the field for battle.
I hate that I have to look at the start of every year this way, but I’m tired of her falling through the cracks and there being trouble because they don’t understand.
I’ve gone in guns blazing.
First battle is ours.
Now to finish picking up some sensory toys from Amazon. (Our favorites are the [amazon_link id=”B001EWC5M4″ target=”_blank” container=”” container_class=”” ]Tangle[/amazon_link] and the [amazon_link id=”B00A8PS4NC” target=”_blank” container=”” container_class=”” ]Stretch Balls[/amazon_link])
by Sarah | Jun 21, 2013 | All About Denver, All About Erik, All About Kennedy, All About Molly, All of Us, Autism, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
In the land of skinny genes, cystic fibrosis and oral aversions – we’ve got three kids rocking the low end of the growth chart. The words “Failure to Thrive” are bandied about on a regular basis and we are constantly checking little one’s diets to make sure they aren’t just getting calories, but healthy fats and plenty of vitamins and minerals too.
The universal consensus for adding all of these things to help my kids grow & gain weight like they should?
Doctors across the board have pushed us to full-fat Vitamin D milk. It’s all we’ve got in the fridge, and we go through 3-4 gallons a week between the kids and hubby.
Before this FTT world hit my life I knew so very little about milk because I wasn’t allowed to touch the stuff (still can’t) due to an allergy (allergy, not intolerance). These days I’m learning a lot about milk beyond my family’s obsession (seriously, the husband can’t stop drinking it)…because I like to know about what goes into my family’s bodies – especially if it’s meant to promote their health.
One thing that I love learning is how drinking milk is likely to help my own state and community. After all, Indiana is home to over 1200 dairy farms – 97% of which are family owned (and I’ve met some of those families). I was also surprised (and happy) to learn that most milk travels less than 100 miles from the farm to the grocery store.
Of course, the biggest thing I made sure to learn about and know really well is that both plain and flavored milk contain nine essential nutrients, including calcium, potassium, phosphorous, protein, riboflavin, niacin and vitamins A, D and B12. Considering my kids needs, this is of utmost importance. It means that they’re getting vitamins and nutrients that either they refuse to eat, or that their bodies are leeching from them.
And the only factor that matters to me, personally? Indiana – well, it ranks second in the nation for ice cream production. Because, I can only tolerate 1 serving of dairy a day…and you better believe it’s in the form of ice cream.
*~*
*Disclaimer: This post was sponsored by Indiana Dairy. This means I was paid for it, however all opinions are mine and true based on my own experience. You can’t pay me to lie about my family’s health…it’s too important to us all.
by Sarah | Jun 19, 2013 | All About Denver, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Autism, Blogging Life, Cystic Fibrosis, Hospital, Special Needs, Sponsored
With my first child, I never heard of cord blood banking. It was around, but I was young and trying to figure out how I was going to do this whole parenting thing, and it wasn’t a blip on my radar. With my girls, this childbirth thing was old hat, although the larger family freaked me out and I was worried about finances and our small home and all the little details. In both cases I heard of cord blood, I researched it (kind of), and dismissed it. After all, my kids wouldn’t ever be sick. Denver was healthy as a horse (I thought), and my other two children would be the same.
Hindsight.
Now that I have two kids with Cystic Fibrosis, a very young niece with cancer, and have a much broader view of the world thanks to blogging, I wish I’d made that choice.
Through cord blood banking, you can collect and preserve potentially lifesaving stem cells, and doing so could one day save the life of your child or a blood relative. You can bank even more stem cells by collecting them from 2 usable sources of stem cell-rich blood: the umbilical cord and the placenta. This service is called Placental and Cord Blood Banking, and it’s available only from LifebankUSA. Whether you choose Placental and Cord Blood Banking or Cord Blood Banking alone, there are many important reasons to choose LifebankUSA.
There’s only one opportunity to save your baby’s stem cells for the future…
As an expectant parent, your baby’s health means everything. Right now, he or she is protected in the womb and will soon enter the world. There is a lot to think about and prepare for, but an invaluable step you can take when your child is born is to preserve his/her stem-cell rich cord and placenta blood The ability of stem cells to save lives via cord blood banking has proven successful for replacing abnormal or diseased cells, and treating life-threatening blood disorders such as leukemia, lymphoma, and myeloma. In fact, since 1988 stem cell transplants have been used to treat some 80 diseases. No, Cystic Fibrosis isn’t on that list – but I imagine one day it will be.
I’m done having children, fate and biology means my body is no longer able to have them, but if I could, I’d bank the blood. I recommend it to those I know debating it. Sure, the odds of illness might be small – but then as I’ve learned, you just never know.
Today, LifeBankUSA is having a contest, and you can win a SpaFinder Gift Card worth $200. Just head over to Facebook to enter the contest. It’s super easy!! (All those links, and the top image on the page will take you to the contest!)
And seriously, consider cord banking. It’s worth it.
*~*
ABOUT LIFEBANKUSA
As the only company that offers cord blood, placenta blood and tissue banking — and the first to release placenta-derived stem cells for a successful transplant — New Jersey-based LifebankUSA is a technological leader that is pioneering key medical innovations in the field. Owned by the Celgene Corporation, a world-class biopharmaceutical company, LifebankUSA also operates a robust donation program and collects cells from anywhere in the US for use primarily in advancing medical research.
*~*
*Disclaimer: This post was sponsored by LifebankUSA. I was paid for this post, but all opinions are my own heartfelt truth. I never take my children’s health for granted, and you can’t pay me to lie about it.
by Sarah | Jun 13, 2013 | All About Denver, All About Family, All About Kennedy, Cystic Fibrosis, Special Needs
It starts early.
Actually, the night before in a way.
As the teen is put on a fast, and we all go to bed early.
Because we have to leave at 7AM to get to the hospital at 8AM.
So the teen can drink that sickeningly sweet glucose concoction.You know the one, the same one we drank when pregnant.
And then we wait.
For two hours.
For more blood to be drawn.
Then the girl gets her blood drawn – which holy hell it’s like she’s being murdered.
Then it’s onto x-rays.
And functions.
And then we meet…
THE TEAM.
The social worker who hasn’t got much to say, but comes in every year. Makes sure we aren’t being killed by medicine costs. That we have all the ‘help’ we need.
The nutritionist that always tells us the kids are too skinny and to fatten them up. She gives us orders for calorie/fat boosting nutritional supplements.
The nurse that takes cultures and histories and makes sure all is clear.
The research associate that clues us in to new research projects we can partake in if we chose.
We break for lunch, and return and wait.
As our hospital is a teaching hospital we then see the Fellow. Who talks to us, examines both kids and heads out.
Then the doctor. Who examines both kids, goes over x-rays and future plans.
This year we had a change from the patter as the teen is being prepared for his own care. His exam was held in his own room where she went over the (still surprising to me) aspects of CF and how it could affect him and his future. The things no teenager wants to talk about in front of their parent…I mean EW.
It’s a full day.
Long.
Exhausting.
It ends with us grumpy.
Ready to get the heck out of there.
And grateful for another year.
It’s called a “birthday visit”.
A celebration of an anniversary i’d rather forget.
Kennedy’s is June 11th.
Denver’s is April 29th.
We meet them in the middle.
But in both cases, I’d rather forget that day.
The day we “knew” for sure.
Not celebrate it with a painful, long, exhausting day.
Although if we have to ‘celebrate’ such a ‘birthday’.
What better way than in misery?
by Sarah | May 14, 2013 | All About Family, All About Molly, All of Us, Autism, Special Needs
Sometimes it’s a thought in the back of our heads.
Most days we try not to imagine that it might happen that way.
Our vision of ‘perfect’ for our kids was always, as most parents is, that they grow up and out, have their own lives, their own loves.
For the most part, we haven’t redefined that vision, that dream.
Some days, though…we worry about this one.
What if her quirks hold her back?
Her misunderstanding of emotion leaves her alone?
Most of the time we ignore the fears. We focus on her growth, her excellent development socially, listen to her dreams of being a model.
Until the day one of our myriad of doctors says, “That one may never leave the nest.”
It puts a rock solid lump in your belly to hear it from a professional.
I guess it’s a good thing my trust for doctors is in the toilet.
Because I refuse to believe it.
At least for today.
And for the future.
Until proven otherwise.
by Sarah | Apr 27, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), GERD, Hypotonia, Special Needs, Tibial Torsion
So X-ray might not be original, but I don’t care.
Some days I wonder how it is that Kennedy doesn’t glow.
I know the exposure levels are ‘minimal’.
I remember the lectures.
I remember the exposure tags when I worked at the vet’s office years ago.
But Kennedy has had so many x-rays in her short 7 year life.
They started around the time she was a year old.
Some X-rays were because of her lungs, and her eventual diagnosis of CF.
Others were for her hypotonia and the possibility of one leg being shorter than the other.
Or her tibial torsion.
And let’s not forget the reflux…oh, and the dysphagia where she had painful swallowing (which we eventually learned was from her inability to chew properly)…which meant about 5 times drinking and eating barium-laced substances and eating in front of a fluoroscope.
She has spent more time in front of X-rays, CT-scans, fluoroscope’s in her 7 years than I have in my entire life.
I’m seriously surprised she doesn’t glow.
*~*~*
The A-Z Challenge has over 1900 participants, all blogging from A to Z this month. Check them out and see if you can’t find a few new favorites!!
Molly is entering 3rd grade.
