Tuesday, March 10, 2015

The Neverending GI Story

This is another post about poo.  I want to give fair, advanced warning for those that may not care to continue onward.











Still reading?  Cool.

As you may remember, we're still working on potty training Miss Sassypants.  She was doing really well with pooping, and we knew the miralax was working and keeping her cleaned out.  Recently, though, she started exhibiting some behavioral issues in regards to elimination, and started holding it in instead of letting it go.  We all knew she had to go, including Judith, but she would try and hold it in until the next day and was miserable as a result.

Now we're having the additional problem of increased mucus production because she appears to be brewing yet another respiratory infection.  All of that mucus her vest shakes out of her lungs has to go somewhere, and there are basically 2 options: spit it out, which is something we're going to start working on so she can then start learning how to huff cough; or swallow it, which is typically what young kids do until they learn to spit it out.  From there, it has to get out somehow.  Sometimes if it's really bad and upsetting her stomach, she'll vomit it out.  Most of the time, though, the only exit point is through her intestines, and that leads to some really mucusy poo.  The other problem with this?  If it doesn't exit, it hangs out in her intestines and blocks things up/slows things down.

Over the weekend, we knew she had to go, but it just wouldn't work it's way out.  I started to panic Monday morning because we were starting day 2 with no results, and I was concerned she was backed up.  1 phone call to clinic later, and we got the green light to start an at home clean out with multiple doses of miralax.

We loaded her up, and she kept trying to go, but was saying it was stuck, and eventually started saying that it hurt.  By 7:30, she started screaming and straining.  This has happened a few times in the past, most notably when she's had the 2 significant blockages that required inpatient clean outs, so I figured we could be in for a rough hour or 2 while she tried to pass whatever was sitting there.  But once she did go, the screaming didn't stop.  This wasn't the typical backed up poo, but we couldn't find evidence of anything else happening, like a rectal prolapse.

I knew I needed to call clinic and ask them about other possibilities, and the first thing they thought of based off my descriptions was rectal prolapse.  So my line of thought wasn't too far off base, even though we didn't see anything.  It's very possible that it could have happened, but retracted quickly once she relaxed.  We're certainly going to have to keep an eye on it, but it sucks that this is even remotely in the realm of possibility for her.  It's something that I've been concerned about for a long time since she's always had to strain to go, but if it is starting to happen and as long as it's retracting on it's own, it shouldn't be as problematic as it would be if it weren't able to retract.

Today has been a much better day for her, and I'm hoping that the higher doses of miralax will keep things moving and help push back at the mucus that could be building up in there.

Monday, February 23, 2015

I Am Not A Supermom

When you have a child with special needs, you hear some interesting things come out of the mouths of other people.  Sometimes it's unsolicited advice, which every parent gets; sometimes it's a comment or statement that is completely asinine and rude; sometimes it's advice that is well intended, but can't be applied to your situation, and can sometimes lead to hurt feelings; sometimes it's a statement of awe or wonder.

"I don't know how you do it!"

"You must be a supermom to handle everything!"

And the above statements are sometimes followed with "I know I certainly couldn't do it!"

Have I ever made these statements?  Absolutely.  These days I often say it jokingly with my friends who have 2 or more kids.  Personally, I don't see anything harmful in the first and last statements, either as a stand alone statement or combined.  Even the middle statement is relatively harmless compared to other things that have been said to me in the past.  But for some reason, the whole "supermom" sentiment bugs me a bit.

Dear readers, I want to say that I am not a Supermom.  I'm a mom just like the countless other moms in the world.  I make mistakes, just like every other mom in this world.  Sometimes a treatment is missed.  Sometimes housework sits and waits for a while because there just aren't enough hours in the day to do enough treatments while on sick plan.  Sometimes I'm constantly getting up and down to deal with poop and mucus, and sometimes I'm getting snot or the latest haul from the nose mine wiped on my shirt because she "forgot" to go get a tissue.

How do I do it?  I just do.  Which is exactly what every single other parent in the world does with their child, special needs or no special needs.  I don't possess any magical powers that help me soldier through.  I know that because of Judith's special needs, I'm required to wear more hats than a parent who has a typical, healthy child.  Some days are hard.  Really hard.  And those are the days when I may wish I had some super powers, or at the very least had some extra sets of arms to help with a few more things.  But at the end of the day, I know this is our reality, and I do the best I can with what I have.

The first year with a new baby can be overwhelming for anyone, but when you throw special needs into the mix, it really can make it that much more challenging and overwhelming.  You adjust and adapt, though.  Routines are established.  When you think you have this little human figured out, they go and throw you for a loop and you have to go back to square one and figure things out again.  That seems to be the typical pattern, and even with the special needs thrown in, we went through that entire process.  Some of the differences were trying to figure out treatment processes, getting ourselves organized in the best way possible, and learning to cope with the emotional aspects of this disease (which can still get you at any given time, but you get better with it not hitting as frequently).

I have to say that even though I was pretty organized in the past, I became almost fanatical about it shortly after she was born, and am still an enthusiast.  That is one of those things that almost has to happen until you can do the new routine in your sleep.  Doing that doesn't require anything special; you figure out what's going to work best for you so you don't go crazy trying to track and remember everything.

I am not a Supermom.  I'm just a mom who has a different reality, doing the best I can to give my child as normal of a childhood as possible, all while working through and with her challenges.

Friday, February 6, 2015

T-Shirt Fundraiser!

We're always looking for people to join our Great Strides team, and even if you can't be at the walk in person, you can sign up to be a virtual walker!  If you'd like to do that, you can sign up here: Judith's Crusaders

If you can't walk, we have a new option for you to show your support for Judith's Crusaders!  You can buy one of our snazzy team tees, and let everyone know that you're joining the fight for a cure!




We have 75 shirts available, and our fundraiser will run through the end of the month.  Shirts will be delivered mid-March.  They are $20 each, and are available in many different sizes.  Order your shirt here: http://www.booster.com/judithscrusaders2015

Of course, if you don't want a shirt, you can always donate directly to our team using the link provided above to sign up to walk with the team.

Vaccines

I normally don’t do this, because I prefer to keep a lot of hot button issues out of my blogging life, but this latest debate with vaccines and the resurgence of measles has me so steamed that I’m going to go outside of my box and dedicate a post to this.

First, I would like to correct some misinformation that aired on NBC Nightly News earlier in the week.  As we all know, mainstream media often omits parts of a story for various reasons, but this particular segment bothered me more than others because of the potential harm that could come to a newly diagnosed CF patient if their parents saw the segment and panicked.  In the clip, a mother with a child with CF was interviewed, and she stated that because of CF, her child could not be vaccinated.  The short versions of the fact is this is incorrect, and a CF patient CAN be fully vaccinated.  CF alone does not prevent you from fully vaccinating your child.  There are exceptions, however, and those exceptions are the same as with the general population: if a CF patient is post-transplant, is allergic to ingredients in the vaccine (eggs, for example), is otherwise immunocompromised/has another underlying condition (like cancer) that makes it medically unadvisable to vaccinate, then the CF patient becomes part of the population that herd immunity is designed to protect.  Based off the clip that was aired, we do not know if this particular patient has an underlying medical reason other than CF that is preventing them from being vaccinated, but the way NBC News passed it off made it sound like CF alone is the culprit, which is not the whole story.

This business of people choosing not to vaccinate their child without a valid medical reason is scary and disturbing.  People will often joke about having a “First World Problem,” using the tag #FWP in posts on Facebook, Twitter, and other forms of social media.  If you want an example of a big first world “problem,” look at the population over the last decade that made the decision not to vaccinate their child(ren).  People are shunning actual proven scientific facts after they do a quick Google search and read incredibly shady websites that are in no way, shape, or form, credible resources based on proven scientific facts.  Now what is happening because they’re shunning decades of research to follow debunked “studies,” the advice from celebrities who do not have any scientific or medical backgrounds, and so forth?  Herd immunity is breaking down.  And that is leaving the portion of our population that is meant to benefit from it even more vulnerable.

People, let’s be real: VACCINES DO NOT CAUSE AUTISM.  At this point, professionals are still trying to figure out the exact causes, but they do know one thing.  Vaccines are NOT the culprit.  Wakefield’s “study” was always questionable because of his methods, and peer review has firmly discredited him.

Chemicals seems to be a popular argument against any sort of vaccine.  The amount of chemicals in any vaccine are negligible, and many are nonexistent because they stopped using them years ago.  You are honestly way more likely to be exposed to more toxic things by simply breathing.  And then there are those that believe the government and “big pharma” are out to get them.  Vaccines are not a money making scheme!  “Big Pharma” isn’t profiting off of you taking a step to prevent your child(ren) from contracting something like polio, measles, rubella, whooping cough, etc.  The same vaccines we have access to are also being sent to developing nations where parents are gladly accepting them so their children can escape the horrors of these diseases.

I firmly believe that a lot of the issue is stemming from the fact that the vaccines are doing their job.  I’m 31 years old, and never had to witness or experience the diseases that were considered eradicated until recently.  My parents’ generation was among the first to start receiving some of the vaccines for things like polio, but they still remember some of these diseases and what it was like for people contracting them.  For my generation, we had the luxury of being almost blissfully ignorant thanks to vaccines.  Yes, these diseases were still around, because there always have been people who claimed religious exemptions for their child(ren), and there were always the medically exempt, but hearing about one of these diseases appearing was a rarity because the herd immunity was still very strong, as the vast majority of the population was vaccinated.  It’s almost like there’s a line of thought of “It can’t happen to me” because herd immunity does still exist, but I’m not sure people actually realize that by making the choice not to vaccinate their child(ren), they’re contributing to the demise of that protection that needs to be there for the vulnerable population, which is assumed would also protect their child(ren).

Yes, there is always a possibility that immunity can break down over time, and you won’t know it’s happening unless you get lab work to check your levels.  There may also be a moment of panic when you realize you’re not up to date on boosters, or didn’t receive a subsequent booster at all (like I discovered when I was in high school and was volunteering at a special needs preschool, and there was a mumps scare; it was previously thought that my generation was fine with the initial MMR doses, but they discovered another booster was needed to rebuild immunity that was breaking down over the years).  If that would happen, though, for a typical healthy person, it would be assumed that whatever immunity they had left would lessen the severity of symptoms if they were exposed to the disease.

The resurgence of these diseases scares me.  We do have Judith fully vaccinated, and would have done so regardless because we firmly believe in the scientific data and evidence collected over the years that proves vaccines work.  However, I have friends who have or are having babies, and their precious little ones are now at risk.  I know a few ladies from various groups who have children battling childhood cancers.  They are now at a greater risk.  In the CF community, there are patients who are post-transplant that are now at a greater risk.  And for the CF population in general, I still worry about the risks.  Even though Judith is fully vaccinated, I worry that her body hasn’t built up the proper immunity to it.  The complications from many of these diseases is enough to make me want to put her in a bubble right now (even though I realistically won’t).  Let’s look at measles as an example.  One of the biggest complications is pneumonia.  For a CF patient, pneumonia is bad news.  Pneumonia means irreversible lung damage, which then chisels away at life expectancy and can further shorten their life.  Depending on the patient, it can also be a death sentence.

I wish things were different.  I wish that this movement hadn’t gained the momentum it did, and innocent kids who are able to be vaccinated were/are vaccinated so we can preserve the herd immunity, keeping these diseases eradicated in our country.  I wish that we were not in a position now where 5 infants in Illinois, over 100 people at Disney Land, and how many others across the country hadn’t contracted measles because of these chunks taken out of herd immunity.  Maybe now that this is happening and people are starting to see the repercussions of their choices, some eyes will be opened and minds will be changed.  It’s incredibly sad that it has come down to this, though, and there are innocent people suffering.

Please vaccinate your child.  Do your part to help protect those that cannot be vaccinated for medical reasons.  Please do not contribute to the demise of herd immunity, but contribute to the solidification of it so we do not have to witness these diseases making a bit comeback in this country.

Friday, January 23, 2015

Our 2015 Video Is Here!

Check it out!  I have it embedded in our side bar as well, so if you want to watch it later or show it to someone later, you don't have to search for this specific post.


Appointment Week

We didn't have appointments every day this week, but we did have 2 scheduled, and on top of everything else right now, it led to kind of a chaotic week.

The big appointment was the quarterly clinic visit, which overall went really well.  Judith did lose another few ounces, and is down over half a pound at this point, so while they're concerned, it's not at an immediate action point.  She was 31 lbs 7 oz, and her new BMI is 17%.  Since she's been sick, that could be contributing to her loss of appetite, and we're waiting to see if she can regain the lost weight once she's feeling better.  Because her cough is starting to come back, and because she's still pretty congested, she's on another round of antibiotics to see if we can fight off whatever else might be brewing.  We're trying something different, and avoiding the bactrim for now, so she's taking azithromycin for 10 days.

We're going to have to go for a sleep study at some point, because Judith's snoring at night is getting worse.  Granted part of it is due to the congestion, but even when she's not congested, she'll snore.  Dr. G. wants to rule out obstructive sleep apnea, which is apparently very common in young kids, and often gets worse/peaks around Judith's age.  Depending on what the results of the study are, she might need to have her tonsils and adenoids removed.


The other appointment was this morning, and that was a repeat hearing test ordered by her PCP.  Judith didn't quite understand what to do with the test they run in the office, and she wasn't fully cooperating, so they wanted to double check and make sure she's hearing the tones she should be hearing.  Part of the concern also stems from all of the antibiotics she was on while in the NICU to fight off the various infections, because some of them are known to cause hearing loss in preemies and term newborns.  She passed her previous tests, but we wanted to make sure that we didn't miss anything or something started to manifest after her previous test before she turned 1.

She was actually really cooperative today, and the audiologist said that things looked pretty good!  The activities they did with her to get her to respond to the sounds she was hearing were much better than the typical "raise your hand when you hear the sound in your ear" that her pediatrician used (or in other words, how many of us did it during our hearing tests in school).  I was pleasantly surprised at how long she was able to focus!  I'm waiting for a call from her PCP at some point to go over the results more extensively, but we know she's hearing the majority of stuff, and when she ignores us it's more of a selective deal.

Monday, January 12, 2015

Big News From Vertex

Today's press release from Vertex is causing quite a buzz in the CF community, and that's because there is an anticipated review for acceptance date with the FDA for VX-809 (lumacaftor)!  July 5, 2015 is going to be a big day for approximately half of the CF population who carry 2 copies of the F508del mutation!

This is why we, as CF families, work hard to raise money for research, and to help scientists work on finding a cure.  These drugs are NOT a cure, and people taking them still have CF, but they're game changing drugs, and will allow CF patients' cells to have some CFTR function, therefore minimizing/slowing down the progress of damage from the disease.

You can read the full press release here.

I have to say that while this is exciting, I can't help but feel bittersweet about it.  Some of my friends' children will benefit from this, either now or soon once the studies are completed in the 2-6 age bracket, and I'm happy for them that their moment is coming.  But it's a major let down to know that we're still in a holding pattern, waiting to see what the studies show for people like Judith who carry 1 copy of F508del.  VX-661 still seems to have better results for these patients, but it still has a way to go in the study process before approval can even be considered.

I know that Judith, and others like her, will have their moment eventually.  The waiting is the worst part.  But in the meantime, we're going to take a moment to celebrate with the entire community, and rejoice that half of the population will very soon have access to these drugs!