Tag Archives: humor

FTA Week, Day 7: Tubie Humor

FTA Week Flyer

FTA Week Flyer

Today’s Topic: Sometimes you just have to laugh: Tubie humor – we all have those funny tube feeding moments, what are yours?

Laughter really is the best medicine.  Many will learn about our story and think “Oh man, they have it rough” and wonder how we carry on.  Braxton is so happy and full of life, love and laughter – so is our home.  Joseph is probably the funnier one of the two of us and he definitely makes it his job to make sure we are laughing.  I can remember some of our most difficult times during our NICU stay or at the first genetics appointment (genetics can be pretty scary) and there was Joseph cracking jokes.  As much as I wanted to be sad, mad, or anything but happy – I couldn’t help but smile and laugh.  He may have the gift, but sometimes funny just happens around here. Especially when it comes to feeding Braxton!

  • Nothing funnier than shooting food across the room.  When we feed Braxton with the syringe, sometimes a little air gets in and to get it out, you turn the syringe upside down so the air is at the tip and you LIGHTLY press the end of the plunger until the air is all out.  Welllllll….sometimes if you push too much, food shoots out and gets all over everything! I’ve shot food from the kitchen across the living room and yes, even up to the ceiling.  I was feeding Braxton once and went to get air out of the syringe and ended up shooting food in the air and naturally, what goes up must come down…it landed all over Braxton.  Poor kid had food streaked across his face and in his hair.  As frustrated as I was, I just had to laugh as I reached over for the wipes to clean him off. [Actually, this has happened multiple times…oops]
  • When I started the blended diet I made some pretty stupid mistakes. The first time I got through the ENTIRE blending process and started measuring out the bottles.  On my third one I realized I didn’t even add the infant cereal to the blend.  I had to pour all the food back in the blender, add the cereal, blend and then re-measure.  Geez louise!
  • I also thought it was a good idea to prepare Braxton’s food while I was half asleep.  The recipe calls for 2 tablespoons of olive oil.  I had the measuring spoon in one hand and the oil in the other…I tipped the bottle of oil to measure out what I needed annnnnd tipped a little too far and there was oil all over the place.
  • If anyone heard some of the things we say in our house they’d think we’re crazy – “Welp, we fed the bed again.” [Braxton’s tubing somehow detached – or we never attached it – and got formula all over the bed….ugh], “Braxton, come here so I can tuck your tail in!” [Trying to catch Braxton to tuck his tubing in so it doesn’t rip out, “Ugh I wish you had a g-tube!” [Fighting Aileen, our non-tubie, to take her meds and secretly wishing she had a tube so I could avoid the fight], “Braxton is leaking all over the place!” [medicine port opened up, or forgot to clamp the tubing and the port opens and gets food all over], “What do you mean there’s no flow!?” [Yelling at the feeding pump for giving me an error message when I KNOW the clamp is open and there are no kinks in the line..oh, wait…actually, I never opened the clamp.] the list goes on….we’ve found ourselves saying some pretty odd things
  • Trying to troubleshoot why you can’t push food through the tube and you check the line, reposition the child, check the line again, press the syringe, check the line again and finally realize you never opened the clamp.  It’s also fun when you forget to open the clamp, push on the syringe and the pressure shoots the extension off and formula splashes back at your face. *sigh* yes, it’s happened. More than once.
  • Me: “We really should donate this formula that we aren’t going to use anymore.” Joseph: “Hellll nahhh, we need to be prepared for the Zombie Apocalypse” — haha we’ll all be living off Compleat Pediatric Formula if that ever happened.  We’ve got quite the stock pile now.
  • Driving all the way to the babysitter’s house, go to give her a refresher course on how to feed and say “so you connect this red tip to this extension — where’s the extension? Ughhhh we left it at home.” Driving all the way back home and back to the sitter…”Ok let’s try this again.” — I have extra supplies stashed in the car now.

I’m sure there are more, but you get the idea.  You can always find a reason to laugh even in the most difficult situations.  Don’t underestimate the power of laughter, and more importantly don’t be afraid to laugh through a tough situation.  It’s often difficult to see how this could be funny later, but trust me, it will be.

Braxton and I thank you for all of your support.

Braxton and I thank you for all of your support.

Thank you all so much for following along with me this week during Feeding Tube Awareness Week!! I appreciate each and every one of you who shared any of our posts and helped to bring awareness about feeding tubes! We can help to raise awareness all year long though! Please continuing sharing our story and the resources we blog about, you never know who it might help.  If we can help even one person along this journey, then we are completely grateful.

For all of this week’s post, click here. Happy Feeding Tube Awareness Week!

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Filed under Family, Kids and Family, Life, Special Needs Child

Good Thing I Had My Orange Juice

You’ve seen the Florida Orange Juice commercials right? The ones where the people are sitting at a table and a whole group is telling them all the things that are going to go wrong that day..and at the end they say “Well…good thing I had my orange juice” Ha, well I totally felt like I was in one today…and if you haven’t seen one, here ya go:

[Disclaimer: I am not being paid for this, it simply related to how I felt today. I actually prefer Simply Orange orange juice instead. No, I wasn’t paid for that either.]

Today, Braxton had two doctors appointments.  Normally, I schedule appointments around Joseph’s schedule so I will have help getting him to and from appointments.  I work about 5 miles from most of his appointments, so it really helps when Joseph is home for him to bring Brax and for me to just meet them there.  Well, unfortunately, this week, Joseph was called in to work early leaving me to fend for myself with today’s appointments.  Normally, I leave about 15 minutes til the appointment time and arrive just on time. When I’m on my own, I have to leave an hour earlier than I planned so that I can drive all the way south to pick Braxton up from daycare and then all the way north for appointments.  Sadly, none of the specialists we see are near our house so it’s a good 30-40 miles from home for every one of them.  Blah! Needless to say, my breakfast table had Joseph telling me he had to go to work early. Excellent. Work telling me I’d be incredibly busy for the morning. Lovely. Braxton telling me I’d have to drive all the way to his daycare to pick him up. Sweet. The dentist telling me to arrive 15 minutes early for paperwork. Fantastic. The ophthalmologist telling me I’d have to wait an hour and a half to see her for 5 minutes.  Stupendous! And the weatherman saying it was going to rain all afternoon. Oh, joy! And finally, Aileen telling me she was going to have a bad day and throw a fit when I got home.  Swell. Unfortunately, I did not have a glass of magical orange juice.

The Dentist appointment went really well! There is a special needs clinic near the other specialists that Brax sees, but the waiting list was too long, so I found another dentist who has experience with SN children.  She was super nice! The whole staff was! From making the appointment, to filling out paperwork, and even the exam everyone was very nice and patient and helpful about the whole process.  Since he is still a baby his first cleaning was a lap exam, where he sat facing me and then he was laid back so the dentist could check him.  Usually, you have to sit awkwardly on that uncomfortable exam table, well this clinic had a large comfy chair I got to sit in! Pretty nice!

Quite the cozy exam room!

Quite the cozy exam room!

The comfy chair I got to sit in while they examined Brax

The comfy chair I got to sit in while they examined Brax

The dentist checked his mouth and we knew Brax had his 2 front top and bottom teeth, but turns out he has SIX more teeth coming in!! They are all in a crazy order, but the dentist reassured me it’s perfectly normal (regardless of him being SN) His top molars are coming in on both sides and his top & bottom canines are also coming in! Holy cow! I had no idea!! Guess we’ll be investing in a toothbrush sooner than expected. I also talked to her about taking his pacifier away and she said from a professional standpoint, she didn’t see any reason for me to take it away.  She mentioned speaking to a child psychiatrist who told her that taking away the pacifier could actually be detrimental because it’s something that is familiar and is comforting for him, so if we take it away it could set him back.  He hardly uses it anyway, so I’m not too concerned about that.  Brax also has one of his front teeth coming in a little crooked and covering the frenum on the inside of the upper lip.  The frenum is that small piece of tissue that you see under your upper lip connected to your gums.  Anywho, Braxton’s tooth covers that and I thought it might have to be cut or something, but the dentist said that wasn’t necessary.  She mentioned that it didn’t appear to be losing blood supply or anything and that in the future we could put an extension device in to help straighten the front tooth out. Overall, the visit went very well and multiple times the dentist told me she sees a lot of the same things in “typical” children who have no underlying genetic issues…that kind of made me feel a little better about everything. At least not everything about him is out of the norm.

Brax's tooth covers the frenum

Brax’s tooth covers the frenum

Our second appointment of the day was with the ophthalmologist.  I have a love/hate relationship with her.  I think she is very knowledgeable and thorough, but her office is terrible! I wait over an hour EVERY. SINGLE. TIME! We went straight after the dentist, so we arrived a little early (about 2:45 for a 3:00 appt) and there was no seat, so I had to sit with Brax on one of the little kiddie super uncomfortable wooden chairs -__- until we were called back at 3:55. Doc came in right away and visited with us for maybe 5 (ok ok I’ll give her the benefit of the doubt – 10) minutes.  This was a follow-up regarding Braxton’s abnormal tear ducts.  The lower ones are very small and the upper ducts are missing.  We tried probing and irrigation in April of 2012, but even the smallest probe had trouble fitting in to Braxton’s tear ducts. We’ve been playing the “wait-it-out” game ever since. The doc said that over time his ducts would grow and eventually they could try the probing again.  Well, today she looked in office and said that she could somewhat see the tear ducts, but that they still looked a little small to try and probe again.  She recommended we again wait until just before his 2nd birthday to see if they get any bigger.  If they do, Braxton will be put under anesthesia again and she will attempt the probing & irrigation again and possibly insert silicone tubes into his tear ducts.  The tubes will help to open up the tear ducts and allow the tears to clear naturally and eventually the tubes would come out, but leave the new tissue that has grown in tact so he would have working tear ducts.  She said we’ll be coordinating this procedure with the occular plastic team, because if, for some reason that STILL doesn’t work, we will have to go ahead and do a reconstructive surgery. 😦 He would have to have Lacrimal Bypass Surgery with Jones Tubes, which means they will break a small connector bone at the top of the nose and essentially create NEW tear ducts, therefore bypassing his original ones completely.  After 3-4 months the tubes would come out leaving the system in tact for his body to use instead of the original ones.  Blah, poor kiddo. (Images below from here.)

Illustration of Normal Vs. Blocked tear duct

Illustration of Normal Vs. Blocked tear duct

Before the surgery

Before the surgery

After the surgery

After the surgery

All in all, it was an ok day, albeit an extremely busy one! Good thing is, that it didn’t rain! Woo, take that weatherman! Haha…small victories.  It’s also a good thing that aside from daily therapies, we don’t have any appointments until the end of February! Could that be right?! o_O

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Filed under Family, Kids and Family, Life, Special Needs Child