Fun Finds - My Tubey Books

Happy Friday!!

This week, I bring you My Tubey Books - these are a really unique find, since there really isn't much out there that's especially for tube-fed kids.  I'd love to see more books published - there are so many Tubies out there who would love to read a story about a child that's "just like me!"

These books come in "boy" or "girl", and are written by Rhiannon Merritt-Rubadue.

From the back of the book(s):
"Thousands of children in the United States have a feeding tube. With charming illustrations, My Tubey follows along as one little boy (girl) goes about his (her) life with a G-Tube. After all, we have lots of different body parts, some kids just have something a little extra--a tubey!" 


I can't wait for Aidan to be a bit older (these books are recommended for Preschool through Age 7) - I will certainly be ordering him his very own copy of My Tubey!

 

Surgery Day (Turned Surgery Week) - Part II

When we last left fearless Aidan, he had just awoken from his G-Tube surgery.  I was smooching him silly and making weekend plans (revolving around going home on Friday).  We sat in recovery for an hour - maybe two - while they prepared a room for him.  It's past 3pm before we are taken up to 5 South.  Aidan is a limp noodle and a really sweet nurse named Caitlyn settles us in.  He's doing great, she assures me.  You should be out of here tomorrow :)

Caitlyn helps me see his tube for the first time.  I'm inexplicably nervous - what if the sight of it makes me sick?  What if I can't take care of it?  What if I can't *touch* it?  What if I can't do this?

It doesn't look so bad.  It really doesn't.  But the weaker-stomached reader may want to skip what follows.  This blog is officially replacing giggles and sunshine with gastrostomies and stomas.

There it is, world.  Aidan's brand new, hours-old PEG.

Deep breath.  I can do this.  It's not so bad.  Caitlyn says it's going to be fine.  She's a Villanova grad.  She wouldn't lie to a fellow 05'er. 

On tomorrow's agenda: Daddy and Auntie Megan come to see Aidan, Mommy and Auntie Megan take G-Tube class, and we go home!

For now - Sleep tight, Little Bear.  Everything will be just fine!

So Morphine-sleepy, he's actually letting himself be bundled up.

Note that Mommy is already hoarding pillows.

This glorious machine dispenses pain meds.  A lot of tears (mine) would have been spared, had our nurse remembered to plug it in.

Join us on Monday as we learn that we will NOT be going home on Friday after all.

Way Back Wednesday - 4 Months - Mother's Day

Toddle Along Tuesday - Letter to Self

Happy Toddle Along Tuesday!  This week's topic is A Letter to My Old Self.

Innnnnteresting.

I wonder what other mamas are writing.  Letters to their youthful selves?  Pleading with themselves to love their bodies, ignore their catty high school "friends," enjoy their wedding a little more, or live it up a bit more before starting a family?  I'd love to say any of those would make it into my letter.  But they wouldn't.


Dear Self,

I hear you just had a baby.  I don't need to tell you how great he is - you already know.  I don't need to tell you to treasure every moment - you know that too.  You know how important it is to make sure he feels loved.  You have this whole situation under control, and don't let anyone tell you different.

Here's what you don't know...

You are about to be faced with some decisions.  They will scare you, confuse you, and horrify you - often all three at once.  You will agree to have your child put on drug after drug, searching for the one that helps.  You will hand him over to strangers in scrubs and trust that they know what they're doing.  You will feed him.  You will stop feeding him.  You will agree to surgeries and procedures that you'll have to google just to understand the very basics.  You'll see Emergency Rooms, Hospital Rooms, Counseling Rooms, Specialists' Offices, and more waiting rooms than you can imagine - often through tear-filled eyes.  You will laugh and cry and scream and beg and plead for anyone - anyone - to help you.  You will lose friends, and gain friends.  You will gain jobs, and lose jobs.  You will learn so much, and you will feel so naive.

I have the benefit of having done all of these things.  You'll do them soon.  My only words of wisdom for you?  You will make it through this.  HE will make it through this.  Don't hesitate.  Don't stop.  You're doing the right thing. 

Love, Me

PS - Want to know how I'm so sure?  This face wouldn't lie...

Guest Post - What Parents of Special Needs Kids Should Know When Planning for Retirement

A few weeks ago, a woman named Alyssa reached out to me with an idea.  She was interested in guest posting about something she cares very much about.  I had never considered this, and thought it was possible that you hadn't either.  I thought it was worth sharing here...

Money is sometimes a difficult subject to discuss, especially when planning for retirement. Many Americans are busy trying to figure out how much they will need for themselves, so planning to care for a child with special needs sometimes falls by the wayside. In fact, recent estimates show that about 58 percent of Americans die without a will, leaving their loved ones financially vulnerable.

So carefully planning for retirement is critical, especially when supporting a person with a disability or special needs. Technology has advanced and people are living longer, including those with special needs.

For example, according to Derek Overstreet, president of New Millennium Insurance Services, Inc., the average life expectancy for people with Down syndrome has increased from 25 years in 1983 to 60 years today. The statistics show why it is more important than ever to have your retirement plans in order when caring for someone with special needs.

For the first time in history, people with disabilities are outliving their parents, and without proper financial planning, it could lead to disaster. 

The parents of children with special needs should have these documents when preparing to retire:

1.       Last will and testament

2.       General durable power of attorney for financial affairs

3.       Durable power of attorney for health care

4.       Letter of intent

5.       Guardianship plans

6.       Special needs trust

The first three may look familiar. Everybody should have those. But the last three are especially important for parents who have children with special needs.

A letter of intent is a document filled with important information about the special needs child.  Everything from their primary care physicians to their favorite foods should be documented in this letter. It’s also a place for you to spell out what you want to have happen after you die, and it is a guide for the child’s new caretaker.

It’s important for any parent to pick a guardian for their children in case they pass away, but it’s especially important for parents of children with disabilities. Those with special needs may require a caretaker well into adulthood, and planning for this to make sure your child is in the right hands is critical.

Overstreet recommended frequently reviewing guardianship plans. Situations change, and it’s important that your plans are up to date. 

Finally, when preparing for retirement, parents of children with special needs should set up a special needs trust. This allows you to ensure the child is financially secure without jeopardizing their entitlement to public assistance. Without a special needs trust, the child risks becoming a ward of the state.

You may feel overwhelmed by the financial obligations you should anticipate for you and your kids. The good news is that a financial planner like New Millennium can help you draft these important documents and advise you about making your child with special needs part of your retirement plan.

Fun Finds - Syringes?

I'm here to write about fun finds, and the truth is, we haven't been having much fun lately.  Things like AMT Clamps and Stomahesive Powder just aren't that fun.  I tried so hard to think of something that's actually fun for people who aren't us - but it's my blog and I write from the heart - so without further ado - this week's fun find...

Mmmhmm

 

That's right.  The syringe.  Our house is full of them.  Syringes that measure in ml, syringes that measure in tsp, teeny tiny syringes, comically hilariously large syringes.  You name it, we've got it.  Helpful for the obvious reasons, sure - how else does a one year old med up?  But that's just scratching the surface.

Awesome uses for syringes:

1. Bath Toy - Can you say water gun?
2. Weapon of Terror vs. The Cats - Again with the water gun
3. Teether - Really reaches those tender 2-yr molar spots
4. Baby Bird Feeder - especially when your baby bird is also a 17 month old silly monkey
5. Ouchy-Cleaner - rinse the spots that need rinsing.  Leave the rest of your water-weary toddler's skin dry.
6. Gravity Feeder - You Tubie Mamas know what I'm talking about...


Honestly, the comically large syringe was a life-saver for us this week.  We have finally learned how to gravity feed using a 60cc syringe on the go.  And okay, maybe a syringe isn't the most fun of all finds - but the ability to be out and about without being strapped to a feeding pump, and without having to worry about how to keep the tiny human fed - that's pretty darn fun.

Surgery Day - G-Tube

There is so much to say about the week of Aidan's tube, and the events that took me away from my blog.  I have to start somewhere.  How about the beginning?

It's morning, and so very early in the morning, at that.  We're bleary-eyed, hungry, and anxious.  Aidan gets cuddles from Daddy before we head off.  It's finally here - tube day.  May 31, 2012.

Traffic is as bad as expected, but I planned for that.  We've come far too far for snags like traffic to derail our plans.  Bug even naps in the car.  Maybe this day will be easy! (ha!)

We arrive at Pre-Op at 8:30.  We know we're early, but "better early than late!" - right?  We sit, we play, we make new friends.  It's 9am.  It's 9:30.  It's 10am.  Finally - blissfully - Aidan's name is called.  But wait - it's only to tell us that our surgeon is running "several hours" late.  Oh boy, it begins.  Time is killed, songs are sung, books are read.  We're patient.  This will be fine.

Aidan's finally taken back around 11:45, and he takes the giggle juice well.

 

He has friends with him to keep him company.  He's calm, he's safe, and he's happy.  Toby's feeling remarkably brave as well.

I aimlessly wander the halls of the hospital.  I'm killing time, I'm thinking about my Bug, and I'm trying to pretend I'm able to think about anything else.  Fail.  I'm not.  I buy him a Smiley Face balloon at the CHOP shops and head back to the surgical waiting area.

There's awkward forced-casual conversation to pass the time.  I read, I text friends and family, and I replay last night's happy, silly bedtime in my head.  I hope I've made the right decisions.  I hope there will be so many more happy bedtimes.

1pm, a doctor comes out calling Aidan's name.  I perk up immediately and begin to gather our belongings, but the receptionist puts her hand on my shoulder, tells me that I can leave our things there for now, and tells me that the doctor wants to speak to me privately in a counseling room.  I have never felt so sick in my entire life.

I don't even know how I got to the counseling room.  I don't remember walking there, but I'm sure I did, because I found myself sitting on a well-worn couch across from an eager young doctor.  I suppose he's been talking, because I suddenly register that he's asking if I have any questions.  Do I have any questions?!  Are you kidding!?  I'm confused, and I'm still not sure what we're doing here.  All I manage is to timidly ask Is he okay???

Dr. Eager sighs and (I'm guessing?) repeats himself. Yes, he's fine.  He did wonderfully.  He's waking up now, his nurses are getting him situated, and they'll be out for you soon.  Do you have any questions?


Um, yes.  Just one.  Have you considered leading with "He's fine."?  Seriously - I asked that.  I mean, really?  I'm told that they always take families into side rooms so as not to breach confidentiality.  I still think it would be okay to mention that he's alive while bringing me back to the room, what whatever.  The world makes sense again.  I can breathe again.  He's fine, Dr. Eager is just an idiot who doesn't know how to start conversations properly.  Hint: If you are in possession of my toddler, and you say that we need to talk about how his SURGERY went, open the conversation with how completely fine and utterly alive he is, please.

It's another half hour before I'm taken back to be with him.  He's awake, but only barely.  He's totally limp.  I'm told that he awoke in a lot of pain and required some morphine to calm him down and take the edge off.  I hold him, snuggle him, and cover his tiny face with kisses as I think about what we'll do once we're home.

I'd soon find out that nothing was going to go as planned.  More to come.  Stay tuned.

Way Back Wednesday - 6 Months

My favorite picture of my favorite men.

Parents of Tube-Fed Children Ask This of You…

Parents of Tube-Fed Children Ask This of You…
By Lauren Sellers, with the help of over twenty moms of tube-fed children


1.         Consider what our daily life as the parent of a tube-fed child looks like.
Many of us arise at a ridiculously early hour in the morning to the incessant beeping of a pump, a child crying because a tube detached and they are covered in stomach contents or a wet bed after diaper leaks. Buttons pop out, or are sometimes ripped out. After a rough morning, our days do not get any easier. Michelle Wilson describes it well by saying, “Almost all day long, all we think about is how to feed our child, how much time will it take, how much to give, how fast or slow to give it, can they handle this volume, are they growing, can I feed them this...oh how I wish they would just eat.”. We cannot simply throw some diapers and some snacks in a bag and walk out the door. Preparation for everything is an exhausting process. And if we are desperate for just a little time to ourselves, we have to then rely on family and friends, who often have no idea how, or are too frightened to watch our medically fragile children.  The stress from never getting away from all things medical puts a huge strain on relationships with our spouses especially. We do not have any time together, without the discussion of medical supplies, hospital visits, bowel movements, fights over feedings, vomiting, and other less-than romantic topics. Financial struggle is also a big issue with most families. Formula and/or special foods are not always covered by insurance, along with extra supplies like protective belts, spare buttons for emergencies, and back packs that make our life and theirs easier. We spend money on gas for every trip to the doctor’s office or hospital, parents miss work, and other family members do without as well. Having a tube-fed child is taxing in many ways.

2.         Inform us in a compassionate manner.
We know you are the experts, which is why we come to you. Please do not speak to us as if we were a nuisance. We know that you see a lot of kids. It’s not as if we take joy in calling your office and listening to all of the extension choices, just to be sent to your voicemail. We only call when we have a valid concern about our child’s health, so please take the time to address our concerns in a timely manner. As Lisa Cavitt points out, “This is a living breathing human being I am pumping fluids into, and if he/she is getting sick every feed, or has a rash or discoloration, or a leak, to me, it is serious because it is not normal, and the minute I assume I know what I'm doing and I hurt her, it is ME that has to explain to [her] why I did what I did.”
We would love to have a happy, symptom-free, tube-free child that no longer needs your services, but until that day comes, it would be great if we could work together as a TEAM. Katrena Lee wants you to know that, “This is TOUGH for us…be kind, compassionate and understanding. Help us work through the issues with you.” Our children are not milliliters or ounces, so talk to us about the overall health, and goals that we need to achieve, not just about numbers. Every child is different. And sometimes, even when we follow your orders meticulously, our child will still refuse to eat anything, and while that may be upsetting to you, it is devastating to us! Please do not assume that if a child is not gaining weight, it is not because we are not trying every last thing we can possibly think of to coax them into taking one bite. All any of us want is for our child to grow and be healthy.

3.         Trust us.
We know our child better than anyone. We make the choice to come to you because we trust you will do your best for our child, so trust that we also have our child’s best interests in mind. Trust us to make good decisions for our child, and help us if we are having trouble. Please have respect for parents dealing with feeding issues 24/7. We do know what we are talking about. Our life revolves around each calorie consumed. We know what food our child can, and cannot tolerate, or will even try. When the time comes that you do not know what’s best, listen to us. In many cases, we have to figure out many of our child’s issues on our own. Don’t judge us simply by our reactions. None of us dreamed motherhood would mean sticking objects into a hole in our child’s stomach, treating wounds, draining stomachs, venting, or flushing. Our laughter may come from our uneasiness in the situation, or our apparent lack of emotion might come from chronic fatigue. We go through a lot more than most parents ever will, and we are tougher for it. Just because we act one way in your office, doesn’t mean that we do not scream in our car after an appointment, or cry once our child is asleep at night. Our child is always our top priority.

4.         Remember that tube feeding is not all bad.
As I have explained at length above, there are definite negatives to having a tube-fed child. But when we do see our child finally have the energy to run around our yard, not cringe over the thought of food that hurts to eat, finally start to catch up developmentally, return to their “old self” (as I have seen with my son), and in other children’s cases, stay alive, we are so incredibly thankful for those tubes. We all hope to get rid of the tube one day, and we work hard with doctors and therapists to do so, but we ask that you still remember how much tubes improve the lives of those that need them.

Another Apology

Yes, it's another apology.  I'm behind on blogging, because life is a bit of a crazy mess.  Aidan's doing well, home from the hospital and happy.  I had to leave my job to care for him, and the stress of not being entirely sure how we'll be buying our groceries and paying our mortgage has kept me from blogging (and thinking.  and breathing.  and sleeping.  but I digress...)

Thank you for bearing with us, and please, please stop back in and see us as we get back into the swing of things in the next few days.  Aidan has a brand new tubie to show off and you won't want to miss it!

Diagnosis: Food Allergies

We began to suspect food allergies when Aidan was just four weeks old.  He was very refluxy and covered in eczema all the time.  As he got older, we realized he was sensitive to certain things in my diet (soy was the big culprit that we knew of) and would react after nursing when I had eaten problem foods.  We were finally referred to Dr. Fogg to be evaluated for allergies.

Aidan liked him immediately.  Who wouldn't?  His office was full of fun toys like tongue depressors, giant q-tips, tissues, and the awe-inspiring stethoscope.

We spoke at length with Dr. Fogg about his symptoms, his reactions, and the foods that I was concerned about.  We decided to test for milk, soy, a few grains, a few fruits, and something else (I'm a terrible mom, I absolutely cannot remember what.)

The tests weren't overwhelmingly positive, although he DID have a delayed reaction to something on his grain grid.  It didn't show up until hours later, but it took two doses of benadryl and copious amounts of hydrocortisone to get rid of that sucker.  I suspect barley, but I digress...  We were sent home with "no allergies" and a mandate to "add everything back in!"

It didn't feel right to me, but what do I know?  Milk (cheese) went back into his diet.  Soy (traces) went back in.  Bananas went back in.  And he was a mess.  Hives, eczema, vomiting, exacerbated reflux.  Clearly, this wasn't working out.



This merited a call to the CPED clinic downtown.  They agreed to have one of their allergists evaluate him. 

 This time, he was immediately very positive for peanuts, soy, and peas.  We received the obligatory epi pen training, and we were on our way - the proud new owners of some bona-fide food allergies.


We are very, very careful with these foods, but we still feel that we don't know the whole story.  We'll do more testing (and different testing) as we prepare to reintroduce food into his diet.  Not soon, just eventually.

Stay tuned...  This story's a work in progress.

Please forgive us...

Due to a longer-than-expected hospitalization, I'm a little bit behind on blogging.  I promise to be up and at 'em by Monday.

In the meantime, enjoy Aidan's finest "Woe is Me" pose...

Seriously, guys.  Woe.

Way Back Wednesday - 7 Months

This smile?  Melts me.

Another Diagnosis? Really?

I've never heard of that...  Are you sure it's not just reflux?  Lots of kids have reflux..." 

"Why are you pushing so hard to find something wrong with him?"

"Doctors today make mountains out of molehills...  He's fine!" 

The reality is that when you have a child with severe medical issues, there will always be people - many of them - who believe that you're making it up.  The accusations range from hypochondria to Münchausen syndrome by proxy to plain old garden-variety insanity.

The truth of the matter is that every new symptom, every new reaction, and every new diagnosis fills me with dread.  Each time we learn more about what makes Aidan tick, I am both thankful that we're able to get him wonderful care, and angry that any of this is happening to him.  With each new discovery, I mourn the loss of the happy, carefree life I envisioned for him before he was born.

My therapist likes to ask what I'd do if I had a magic wand.  I rarely know what to say.  But I can confidently tell you that, in this situation, if I had a magic wand, I'd know exactly what to do.  The same thing that any mother of a hurting child would do.  I'd find a way to take all of his pain and all of his suffering away from him.  I'd gladly take it on myself, if it meant that he'd be able to lead a "normal" life.

This obviously isn't possible, and that's okay.  We're okay with where we are.  But please, stop and think for a moment before you speak.  We don't like this.  We don't wish this upon our children.  Want nothing more than to give our children the gift of normalcy.  

Fun Finds Friday - Bath Toys!

Now that we've settled into our new home, we've finally stopped bathing Aidan in the sink.  At 16 months of age (almost 17!), he has graduated to tub baths.  And you know what that means...

TOYS!

We have two favorite bath toy brands - Skip Hop and Boon.  Here are some of their best tubby finds!

1. Skip Hop Moby Bath Spout Cover - Aidan loves this thing, and I love that it protects his little noggin from the faucet.
2. Skip Hop Octopus Ring Toss Fountain - I might love this more than Aidan does, because he hasn't figured out the fountain aspect - but he loves the floating rings and I love that they don't hold water.  This is a great non-mold prone toy!
3. Skip Hop Dunck - This is a set of three floating cups.  Aidan likes to stack them, pour water from them, and point at them (shouting DUCK!).  He plays with them, I use them to rinse his head, everyone's happy!
4. Boon Splat Floating Ring Toss - This is cool because not only to the rings float - the base also floats!  Again, these are blessedly hole-free, eliminating that "trapped murky water" problem.
5. Boon Water Bugs - The water bugs float, as you might imagine, and so does the net - making this a wonderful bath OR pool toy!  This one is definitely coming outside into the pool this summer!
6. Boon Bathtub Appliques - I'll be honest, sometimes I play with these too.  A bit of water is all it takes to stick these buggies to the sides of the tub.  Aidan finds them hilarious, I find them super easy to clean up.

                                           

Hats off to these two wonderful companies for their bright, fun, innovative products!