Suck Fest

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I knew this was going to happen once we got a G-tube put into my son, who has cerebral palsy. Emergency hospital visits when it acts up. I went in to feed him lunch and I heard bubbling coming from somewhere. My first thought was that he had gotten the tube open. I try to keep it away from him, but occasionally I’ll catch him playing with the end of it, where I open it to feed him. This time, though, I saw some light colored blood and (stomach) liquid on his abdomen near the opening of tube to skin. It was still in, but leaking. We’re here now, waiting to go back. He’s 18 now, so we can’t go to the peds ER, where they usually get you right in.

G-tube issues
Chance

This sucks. What else sucks today? 💩

1. My husband and third child are out of town at a marching band tournament. 😮

2. My oldest son had to disrupt his schedule to help me get him here. I can’t lift him into or out of the car anymore. 😕

3. Waiting. 🤤

4. Chance gets no food until this is fixed. 💉

5. It’s Saturday 🤕

6. Again, it’s Saturday and we are at a small community hospital near my house. No doctor is even on call who can fix this. 😷

7. I think I left my front door opened. 😁

Sibling theme costumes
Chance as Raggedy Andy, years ago. His sister is, of course, Raggedy Ann.
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10 Rules to follow before becoming a parent.

Let’s jump right in, here:

1. Have a good education BEFORE the kids arrive.

2. Travel widely and wildly.

3. Babysit, alot.

4. Be proud of yourself.

5. Find your Voice.

6. Be an advocate.

7. Actually listen to your parents stories.

8. Quit smoking

9. Gather your tribe*.

10. Always, always treat children gently and respectfully.

*Tribe – A group of people, blood relatives and friends, who will support you no matter what. The more the merrier. 😁

So I’m a Maker, it’s a thing.

Have you ever…

Maker
Rosary bracelet

made jewelry?

This is something I made myself, which is a real accomplishment considering I have more of a science-based rather than a creative brain. Also, my fingers often feel swollen, stiff and sore from fibromyalgia.

One of a kind
Rosary bracelet

I decided to start making unique Rosaries and Rosary bracelets. I’ve always liked things that have more than one use (science brain), and this jewelry is pretty as well as useful. Right? 🍀

Pulls
Purse charms

Sometimes I make other things, like the purse charm above. This would make the perfect gift for an active woman who loves nature. She will love her faith but will rely on a bit of good luck now and then. 🤞

Rosary jewelry
Rosary bracelet

If you’d like to see more, here is my shop address:

http://www.etsy.com/shop/heavenlycreationsinc

Lifestyle my Ass

Here’s a pic of me. My husband took it. He’s a good husband. Doesn’t it look almost elegant? It’s not, it’s at our local dog park. This is right before a swarm of mosquitoes attacked me. And Baja, such a beautiful girl, jumped all over me with muddy paws.

#edgewaterMD
Almost bug time!
Daisy, Baja & Tom

It was fun! Next time I’ll use bug spray. 🐛

The Trach Monster Roars again. 5 steps to covering the healing skin.

Chance got his tracheostomy tube out a week ago, so why am I still dealing with the damn #trachmonster ?

The hole doesn’t want to close up. We’re supposed to keep an airtight seal, but Chance has other ideas. He scratches at the bandages, which is understandable, but I can’t have that so sometimes I’ll add the bright, stretchy material that doctors use after taking blood.

Medical fabric

Other than this and scissors, here are the supplies:

Here is #1 – the non adhesive foam dressing. Lay it sticky side up.

Thacheostomy
Make sure this one IS adhesive.

#2 will be the bandage. Lay it sticky side up right in the middle of the foam dressing from above.

#3 It’s just a 4×4 sponge. Fold it until it’s a 1×1 then lay it over the bandage sponge.

#4 and last, get some vasaline. I’ve got the strips, which I cut and lay over the 1×1 sponge. But you could just scoop up some regular vasaline (just a bit) and lay it on the sponge.

#5 Lay the vasaline directly over the hole and seal everything tight. You shouldn’t hear any air coming out of the hole. If you do, add tape to that area and put the stretchy material around the neck. Be careful, not too tight.

You’re going to build it, like this. Please ignore the bandages. Just add vasaline strip on top. Also the pad at bottom below should be adhesive also. Sometimes you can find a thin film that will cover everything.

Tracheostomy
A bandana is our best friend
These work well by themselves, but cost $5 each.
Quote

Sorry, 🌟 ted this on this blog page instead of my for-now secret blog.

More later.

Follow me here:

http://www.RealMaryZ.wordpress.com

Watch for my other blog to debut. I have to wait for permission to un-privatize the subject.

Please send me designs for your wardrobe ideas with regards to a female to male (that’s called a transmale) transgender who is 5’3″ tall.

It can be some thing you see in a catalog (take a pic, add in comments and/or here: heavenlycreationsinc ). Also, sketches would be wonderful. #Beyourbestbitch ; that’s the hashtag.

The winner, as judged by the model above will win any pair of earrings available at my Etsy shop right here:

http://www.etsy.com./shop/heavenlycreationsinc

We will go until Halloween, when we will also be doing something big!!!

The Medical Mom.

Hospital
Chance in medical angst

This blog post really nails what it’s like to be the mother of a chronically I’ll child… from @TheMedicalMom

Have you ever been so tired that the taste of cheap coffee seems like a blessing? Have you, looking into the mirror, not been able to remember the last time you showered or even brushed your hair? Have you ever cried in a doctor’s office, finally letting go of all that stress you’ve been carrying so long?

The medical mama has.

She’s held her child as they’ve screamed in pain from an IV or a catheter. She has comforted her baby through the metal rails of a hospital crib. She has found a way to smile in the face of a child who has endured more medical interventions than the average grown man.

When it comes to medical jargon, she has the vocabulary of a tenured doctor. She has spent the few moments she has to herself researching her child’s condition. She is tired, but not weak. She has broken down, but still keeps pushing. She has every detail of her baby’s life memorized, and unfortunately, that life has been full of more than just milestones.

Oh, but the milestones. Maybe they’re few and far between, but they are moments you will see such ease in that mama. She will recant the details perfectly, as she’s played out the moments over and over in her mind. She has a thousand videos and pictures of her baby to prove they are perfectly made, even if their diagnosis says otherwise. You have to understand, the medical mom sees things a bit differently than the average mom. They get to believe in magic, in miracles, and in prayer because they have given birth to the proof it’s real. Regardless of what anyone could ever tell her, she has watched her child break every rule and negative expectation. Her baby is heaven-made.

The florescent hospital lights and multiple cords have become the landscape of her motherhood. The sound of beeping machines is the soundtrack. She has become defined by the hard edges of hospital walls and the notches in medicine syringes.

She has used every bit of patience on her child and their needs, so she appears to be short-tempered and lacking social skills. Her days are full of chatting with therapists or other medical moms, as they are the support system that keeps her standing. Her child speaks to her in their own special language, and no one will advocate for that baby like she will.

She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it.
Photo credit to my amazing husband for capturing this moment perfectly.

A Minor Bump in the Road

Have you ever been so tired that the taste of cheap coffee seems like a blessing?  Have you, looking into the mirror, not been able to remember the last time you showered or even brushed your hair?  Have you ever cried in a doctor’s office, finally letting go of all that stress you’ve been carrying so long?

The medical mama has.

She’s held her child as they’ve screamed in pain from an IV or a catheter.  She has comforted her baby through the metal rails of a hospital crib.  She has found a way to smile in the face of a child who has endured more medical interventions than the average grown man.

When it comes to medical jargon, she has the vocabulary of a tenured doctor.  She has spent the few moments she has to herself researching her child’s condition.  She is tired, but not weak.  She has broken…

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