Friday, July 27, 2012

It's Just a Cap

Just another Friday at the farmers' market...
Just a sundress...
Just a cap...

It's anything but just a cap!  Abby has been doing a wonderful job with her trach capping.  We're up to capping for 1 hour and 15 minutes, 3x a day, for a total of 3  hours and 45 minutes.  By the time we get back from our vacation, Abby will be capped while awake.  Woo hoo!!!  The trach is still there if we need it, but Abby is doing allllllllllllllllllll of the work!

We're heading out for a much needed vacation tomorrow!  I promise to have lots of pictures and stories  when I get back!

Wednesday, July 25, 2012

Lots and Lots and Lots of Updates

They're all good, too!!  :)

Warning:  This is a VERY long post with no pictures.  

Sorry :*(

1.  Abby went to ENT on Tuesday for a follow-up now that she has been off of the vent for a month.  He put a cap on her trach so that she would be forced to breathe out of her mouth and nose.  We're building up tolerance, but she does great with it and doesn't seem to notice any changes at all.  Right now, we're following guidelines to cap her 3x a day and increase by 15 minutes each day.  By the time we come back from vacation, Abby should be capped pretty much all day!!!

 I will call while we're on vacation to schedule a sleep study.  If that looks grrrrrreat, our ENT will check her airway under anesthesia one more time, admit her to the PICU, then take the trach out!!!  She'll stay inpatient for a few days under observation, but for awesome reasons!  If the sleep study doesn't look so wonderful, then we will move forward with the jaw surgery.

The thought that Abby could have her trach out in September is amazing to me.  Absolutely amazing.  I'm not getting my hopes up at all, because I know how things can change.  Just the thought of it is pretty awesome though!  She has come such a long way.  This time last year, we were doing vent trials!

2.  Abby has really turned a corner on the eating.  She is now eating 2 ounces of purees pretty consistently 3x a day, with an ounce of Boost (like Pediasure) at each meal. She also eats a snack and a dessert, for a total of 5 meals a day!  We're able to get between 9-11 ounces of food in her a day, which is awesome, considering that she was just cleared to do any of this at the end of May!  Chewing is going to be hard for Abby.  We know that, and our therapist is ready to start addressing that more strategically when we get back from vacation.  (Making big food changes when you are out of your routine isn't a good idea!)

It's really important that the food Abby eats be high calorie so that she replaces the tube feed she is missing.  That may sound like a great problem to have, but I can't just give her ice cream and cookies all day long.  Most fruits and vegetables are very low calorie (which is why Weight Watchers lets you eat them!), which means I have to bulk up whatever Abby eats.  I've been experimenting with different types of health food mix-ins to see which ones Abby will tolerate.  Texture is still an issue for her, which makes some of the mix-ins a no-no.  She really likes this Super Fruit smoothie mix that adds 20 calories with just a teaspoon and is chocked full of antioxidants!  Unfortunately, it is $31.99 a Whole Foods for an 8 oz bag!  I was so excited when I found it online for just $11.99!!!  She will also tolerate Flaxseed, although it is not her favorite.  It has lots of Omega 3s, so I really want her to eat it.  I pretty much mix it in everything, so she is getting used to it.  I've tried Chia seeds as well, but it turns all of the food to a glue-like substance.  I can't stand to look at it, and Abby refuses to even consider putting it in her mouth.  Thankfully, it is pretty cheap, so I don't mind that it's going to waste. Chia seeds, anyone?   In any given ounce of food, it may have heavy whipping cream, butter, Flaxseed, Superfruits, or Chia seeds added to it!  I can turn a 15 calorie ounce of banana into 105 calories.  Just call me the Paula Deen of feeding therapy.  :)

3.  Abby is officially in her big girl bed and loving it!  She has done great with the transition and I'm even back to hooking up her feeds when I put her to bed.  She is really good and absolutely loves her bed!  When Matt put it together, she climbed in with a I'm hot stuff! grin.  Caleb climbed in and she pushed him out with a fierce, "No!  Mine!"  Sassy, sassy girl!

4.  We are going on vacation--just the four of us!!!--and my blog will be taking a vacation too.  Don't expect to see too much for a while, but I promise that there will be loads of pictures of cute kids when we get back!

5.  With the prospect of decannulation comes a new and wonderful problem...childcare for Abby!  I don't want to actively search too hard when we aren't sure that we will need it this fall, but I also don't want to be caught off guard with no one to take her.  We're hoping to move all of her gtube feeds to nighttime so that the gtube will just be there.  The provider will have to learn how to put it back in, in case of emergency, but that's about it.  The biggest issue would just be following the feeding protocol.

The other side of this is that it would be a part-time, flex schedule week-to-week.  My work schedule is constantly changing because of meetings at work and Abby's appointments, so I can't say that I always work these days and hours.  Plus, Matt is off on Mondays and Abby will be in a preschool program on Fridays. It's really Tuesday, Wednesday, and Thursday where we would be in need, but not even every week.  I'm pretty sure finding someone who would be that flexible will be impossible.  If you know of anyone, please let us know!!  :)  Like I said, this is a really good problem to have.  We just need to start planning for it now!

6.  I had a moment of temporary insanity I felt really brave today and drove alone with Caleb and Abby down to Target.  I have never driven on our main road without another adult in the car when I had Abby, so this is a BIG step for me.  Abby...did great!  I won't mention my other offspring.  :)  I'm still not going to be driving to Baltimore by myself with Abs any time soon, but this was really good for me.  Abby is definitely not the same kid she was a year ago, and I feel a lot more comfortable now.

7.  We have only suctioned Abby ONCE in the last month.  This is HUGE.  Some kids get suctioned 20+ times a day.  Talk about a big step toward getting the trach out!!!!

I might be able to get one more post in before we head out for our vacation....we'll see what tomorrow brings and how long it takes me to put together the organizational unit for Caleb's closet!  Tonight's attempt consisted of me taking the pieces out of the box and a piece of wood dropping on my ankle/foot.  I now have a huge bruise.  Not a great start, but tomorrow is a new day.

Wordless Wednesday

Tuesday, July 24, 2012

I Love Vinegar!!!!!

Alright, I might call myself vinegar obsessed at this point.  I use it everywhere, for everything.  I learned some new uses recently, and wanted to highlight some of my favorite new ideas.  You can read the entire list here.   I haven't tried any of these new suggestions yet, but I would love to hear if any of them have worked for you!  I'm definitely trying out the frost barrier this winter!

*  Kill grass on walks and driveways.  Pour full strength on unwanted grass.

*  Kill weeds. Spray full strength on growth until plants have starved.

*  Eliminate animal urine stains from carpet. Blot up urine with a soft cloth, flush several times with lukewarm water, then apply a mixture of equal parts vinegar and cool water. Blot up, rinse, and let dry.

*  Keep car windows frost free. Coat the windows the night before with a solution of three parts vinegar to one part water.

*  Take 1 cup of vinegar and warm water into a large glass and use to rinse your hair after you shampoo. Vinegar adds highlights to brunette hair, restores the acid mantel, and removes soap film and sebum oil.

*  Unclog a drain. Pour a handful of baking soda down the drain and add 1/2 cup of vinegar.  Rinse with hot water.

*  Clean and deodorize the garbage disposal by making vinegar ice cubes and feed them down the disposal.  After grinding, run cold water through.

*  Corrosion may be removed from shower heads or faucets by soaking them in diluted distilled vinegar overnight. This may be easily accomplished by saturating a terry cloth towel in vinegar and wrapping it around the shower head or faucet.

*  Remove decals or bumper stickers by soaking a cloth in Vinegar and cover the decal or bumper sticker for several minutes until the vinegar soaks in. The decals and bumper stickers should peel off easily.

*  Stubborn rings resulting from wet glasses being placed on wood furniture may be removed by rubbing with a mixture of equal parts of distilled vinegar and olive oil. Rub with the grain and polish for the best results.

Sunday, July 22, 2012

Daddy's Home!!!

Welcome home, Daddy!  We missed you!

Saturday, July 21, 2012

Little Helpers

I had three little helpers when I made Abby's vent cake.  

Guess what their favorite job was?

Abby was a little hesitant at first, but she noticed how much Anna loved it and decided to dig in!

Friday, July 20, 2012

Time Out Bottle

My mom shared with me this idea she found on Pinterest (Yes, she is now officially a Pinterest junkie!!) and I tried it out for myself.

It's a time out bottle designed to help kids not only sit in time out effectively, but to calm down as well!  Caleb can get kind of nasty when he is sent to time out (not my son!), which sometimes leads to bigger issues.  This is one of those, "Can't hurt, might help!" ideas, so I figured why not???

The complete directions are found at the link above, but basically, I added a little clear Tacky Glue, about half a tube of glitter glue, some glitter, and some water.  I didn't measure anything, but less is more.  I added small amounts until the glitter fell to the bottom in about 5 minutes, using my microwave timer to test it out.

The key is to use HOT water.  I put it in the microwave for about 4 minutes to get it boiling.  The heat helps to melt the Tacky Glue, or else it will clump.  So make sure your water is really hot!

Do yourself a favor and just follow the directions from the beginning.  I didn't have clear Tacky Glue, so I tried using oil.  NOPE! It doesn't work at all.  Just get all of your materials right off the bat and it will be a whole lot easier.

The verdict?  Caleb put himself in time out to try out the bottle.  For real.  He LOVES it!  He reminds me all of the time that he can't shake it (like, in anger) once his time out is started, because he will just have to stay in there longer!

He even shook it for Abby, then told her she had five minutes to finish eating before the glitter fell to the bottom.  (But she could have a little extra time if she needed it, he said!) :)

I think the best part, for us at least, is that he really is mesmerized by the glitter and it really does help him to calm down.  He's so focused on the glitter that he forgets why he was freaking out.  It also works for when he's not really in trouble, but is just getting too wild and crazy!

If you have a Wild Thing like me, try out the time out bottle!  It might just buy you a day...

Thursday, July 19, 2012

Vent Party!

Welp, the vent is gone, and it just as exciting as I thought it would be!!  Abby and Caleb called out, "Bye, bye vent!" as our respiratory therapist drove away.  Here are a few pictures of our celebration.

Bye, bye vent!

Medi-Rents, please take me!

Abby liked her cake!

She started out timidly licking the icing...

...but quickly learned to dig right in!  (She missed out on the real smash cake for her first birthday, so she's making up for it now!)

The cake was a hit!

I think this says it all. :)

Wednesday, July 18, 2012


Today was an emotional day, and I have been a bit "leaky."  But it's all happy leaking!

Our speech therapist saw Abby for the first time in a month, and she was very excited about Abby's progress.  When I asked what we needed to focus on now, she said nothing.  She said Abby is doing just what a child her age should be doing, and she is a typically developing talker!

So what do you do when a professional speech therapist with whom you've been working closely for the last 18 months tells you that she no longer has any concerns about your child????

I cried.  

Very happy tears!!!

Then I asked in a worried tone, "You're not going to dismiss her, are you???"  The answer is NO.  Yay!  Abby has a diagnosed medical condition that puts her at risk for delays, so she will remain in early intervention until age 3.  We'll have to see what the IEP process holds for us after that.  For now, I'm very happy to stay under the very knowledgeable eye of Miss C!

Tomorrow, Abby's vent is going to be picked up by our respiratory therapist.  I can't believe that the day has come, and that we will be rid of the vent!  What a great reason to celebrate!!  We're having a little NO MORE VENT! party tomorrow evening with family, complete with a vent cake!

It is still so hard for me to wrap my brain around the fact that the doctors were wrong.

Abby is not going to be ventilator dependent for the rest of her life.
Abby can talk, and has caught up so quickly to her peers!
Abby can hear, and hearing aids haven't even been discussed.
Abby can see, and her under-developed optic nerves are within normal limits now.
Abby can eat, and is getting better at it every day!
Abby is working toward decannulation!

I'm so thankful that God chose, and is still choosing, to heal my girl.  Tomorrow is going to be such a good day!!

Love These

Say what you want about Facebook, but it is a great way to spread a message to millions (billions?) of people worldwide....very quickly!

These are two little gems I came across recently!

Tuesday, July 17, 2012

Wedding Recap

Abby and Caleb were in a wedding recently, and our crazy week last week prevented me from being able to post anything about it!  

They both "performed" perfectly, and Caleb took his duties as the ring bearer very seriously.  He didn't get to carry the rings, but perhaps if he had, they wouldn't have been left in the best man's car!!!!  (True, and hysterically funny, story!)  I don't think anyone is ever going to forget that wedding!

In all seriousness, it was a beautiful, God-honoring wedding and I think everyone had a lot of fun.  The kids loved the dancing and Abby cried whenever I took her off the dance floor.  :)

This is Abby with her co-flower girl, who was adorable!  The two of them became fast friends!

The other flower girl's mom caught this one, and I absolutely love her smile!  With their backs to us are Caleb and his co-ring bearer.  He was quite enamored with Abby, and I think she may have had a little crush on him as well!

The beautiful bride and handsome groom with all the least one is smiling!

Just a phone picture of my cute kiddos with their "sister."  :) 

I have a couple of videos I took on my phone as well, but I can't seem to upload them here.  I'll work on it and try to upload them on another post.

Besides loving watching one of my favorite women get married, I had two favorite parts of the night as a momma:  1).  Watching Abby and Caleb walk in together after they were announced as part of the bridal party.  I never would have thought that would have happened if you had asked me 8 months ago!  Caleb was SO good about leading Abby.  He is the perfect big brother!  2).  The daddy-daughter dance to "My Wish."  They invited all of the daddies and daughters to dance, and Matt took Abby.  The song was perfect, and I about bawled my eyes out.  Ok, I'm crying just thinking about it.  

Monday, July 16, 2012

Another Use for Vinegar

It's no secret that I love vinegar.  We use it all over our house as a safe alternative to traditional cleaning products.  You can go here to see some of the ways we use it.  Our house may or may not remind you of eating crabs, but whatever!

This is a new trick that I recently learned, though.  Mix equal parts of dish detergent and HOT vinegar.  I heated mine in the microwave for 2 minutes before pouring it in the spray bottle.  This mixture can be used to clean the bath tub, and it works really well to get the water spots off!  I spray a thick layer on the tub and walls, then let it soak for an hour or two.  It does an amazing job on the grout in the tub, so I figured I would try it on the tile floor as well.  Success!!

This mixture can also be poured into the washing machine, along with a regular amount of laundry detergent, to wash the shower curtain liners.  I don't know about you, but I HATE scrubbing them, and they never get clean anyway.  This was a no-scrub way to get the liner completely clean, and the only work I put into it was taking the curtain down and hanging it back up.  I'm sure the spray would work well as a scrubbing method too, but I like that I didn't even have to do that!  :)

The only thing I would share is that when you make your 1:1 mixture of the hot vinegar and dish soap, just make enough for what you need.  You can technically save it for another job later, but I really don't think that it works as well when the vinegar is room temperature.  I have no answer as to why, but the hot vinegar definitely seemed to work better. To give you an idea of how much you might need, I can spray two tubs and the surrounding tub walls using 1/2 cup of dish soap and 1/2 cup of vinegar.  It's the perfect amount!  I used 1 cup of each to scrub three bathroom tile floors, but there was some extra.

Sunday, July 15, 2012

MIA for Good Reasons!!

Sorry I have been MIA a bit this week, but it has been for a lot of very good reasons!  Matt is home this week, so we try to spend as much family time together as possible during his "home weeks."  They are hard to come by in the summer.  (In addition to the trips, there are an additional 2 weeks during the summer when he is technically home, but gone all day and night.  He sleeps at our house, but nobody sees him!)

This week, we:

1.  Celebrated Matt's birthday a little early with a dinner at Outback, but it was sadly disappointing when the power went out shortly after we placed our order.  Turns out, Verizon cut a line while working on theirs and it would be hours before the power came back on.  The only person who ate dinner that night was Abby!  Of course, it was nearing 8:00 by then (lots of waiting as they tried to process our drink check), and we had a disappointed boy on your what did we do?  Have ice cream for dinner at Baskin Robbins!  :)

2.  Went to Matt's brother and sister-in-law's house for dinner.  His sister and brother-in-law were also in town on their way back from PA, so Matt's parents came up for a quick trip so that all of the family could be together at once.  Believe it or not, this is the first time this has ever happened. We've tried a few other times, but someone has gotten sick every time and it has fallen through.  My sister-in-law also had a photographer friend from her church come and take pictures of the kids and families.  7 kids, 6 of whom are 5 and under...chaos!!!

3.  Had swim lessons.  Caleb took private swim lessons for the last two weeks, and it was wonderful!!  On the first day, he clung to his instructor and refused to let go.  On the last day, he swam across the pool by himself, jumped off the diving board, and swam to the side!  It is amazing to see how much he has learned.

4.  Had a pool party for Matt's birthday.  A wonderful family in our church with 3 boys that are/were in the youth group invited us over for a pool party.  There were a bunch of teens there, and everybody had a great time!  It was a little too wild for Abby to get in the pool, but we entertained her with some other toys and iPhones!

5.  Went to the farmer's market.  We went to our weekly farmer's market on the boardwalk on Friday, which we haven't been able to go to since the beginning of the summer.  I think this is only our third time, and it opened in May!  We saw lots of friends there, as usual, including some that we haven't seen in a while.  Caleb met his "Ice Cream Challenge" for swimming (jumping off the diving board and swimming to the step without help), so he enjoyed a cone of "play dough."  It sounded gross to me, but he loved it!

6.  Attended a birthday pool party.  Saturday was a pool party for one of Caleb's best buddies, and we all had a great time!  The kids were fairly calm in the water, so Abby was even able to get in for a while!  They also have a humongous playroom, so all of the kids had a great time.

So now ya see why I haven't been blogging!  Family first!  :)

Thursday, July 12, 2012

34 Years

Matt turns 34 years old today.  I'm pretty sure he's out of his "early" thirties and into his "mid" thirties!  :)

While I can tease him that he will always and forever be 3 1/2 years older than me (yes, if you do the math, that makes me 30...ugh), Matt truly is young at heart.  He loves to wrestle with Caleb and Abby, gets right in with the youth group as they play lazer tag or race down a zip line 40 feet in the air, and is always up for throwing a ball around.

We love you, Matt!  Thanks for being such a great daddy and husband!

Tuesday, July 10, 2012

S'mores Pie

I love Pinterest.  Where else would you find a recipe for a pie that tastes just like a good old fashioned s'more?!  I venture to say it tastes even better!

I made this pie for our family's 4th of July party, and it was a humongous hit.  I had kids running up to me to thank me for making the s'mores pie!  Needless to say, I didn't bring any home with me!

If you like s'mores, you'll love this pie.  But you probably won't love the calories in each slice, or the sugar coma you might find yourself in after you eat a piece.  But I'm pretty sure the extra gym time will be worth it!

I am copying the recipe and pictures right off of the blog where I found it.  The pictures are good and that way you don't even have to take the time to go to the blog yourself.

Smore’s Pie
adapted from Hershey’s
6 Regular sized Hershey Bars, broken into pieces
3/4 cup white sugar
1 cup all purpose flour
1 tsp. baking powder
1/2 cup salted butter (1 stick)
1 egg
1 tsp vanilla
1 cup graham cracker crumbs
1 7oz container of Marshmallow Creme
wax paper

Preheat oven to 350°
Spray a 9″ pie pan with baking spray.
Beat butter and sugar together with an electric mixer until combined.
Add egg and vanilla and continue to mix.
On low, add flour, graham cracker crumbs and baking powder.
Divide the dough in half.
Spread flour on your hands, then press half the dough in the bottom and up the sides of the prepared pie pan.
Evenly spread the Marshmallow Creme over the bottom crust.
Now spread the broken chocolate pieces on top of the Marshmallow Creme.
Now, form the remaining dough into a ball and place on a piece of wax paper.  **You may need to add a little extra flour here.** 
Top with another piece of wax paper and flatten into a 9″ circle.
Carefully peel the top piece of wax paper off.
Flip the crust onto the top of the pie and peel the other piece of wax paper off.
Pinch the dough together to form the crust.
Bake 20 minutes until lightly browned.
Cool completely on wire rack and slice when ready to serve…if you can wait :)

Monday, July 9, 2012

You Might Have Home Nursing If...

Your nurse that you love sees that you are on Facebook late at night, so you come down for a cup of coffee.

You tell your nurse that you don't need a doctor's order to have a well-deserved moment with your child.

You have been marked as the parent who hovers...aka, the parent who holds her baby and loves her!

You finally get the most amazing team of nurses...and then one of them gets pregnant and the other one gets an amazing hospital job--and you are truly happy for them.

You can identify the tiredness that comes over everyone at 4 a.m. and understand their Red Bulls and candy they bring nightly--as well as occasionally finding them with their eyes closed, holding your baby's hand.

The nurse has to remind the doctor and other nurses that you are the mother, and not their daughter.

You are told, "Oh, no, it's just allergies!" and lo and behold, two days later, you, your child, and your husband now have the so-called allergies and that nurse has called in sick.

You come downstairs in the morning and every single light is on, even though you know it's been hours since anyone has been down there.

You have to make rules about what to do when your other child wakes up in the middle of the night...and then they aren't followed anyway.

Your male nurse states that YOU can't change your SON'S diaper, just because he is a boy.

Your nurses try to do everything in the dark because they are afraid to turn the lights on.

You have to tell the nurse your child can come in the living room with the rest of the family.

You assure a nurse that you do, in fact, know how to feed your child by mouth and that you don't need her to hover over you watching anxiously for signs of aspiration.

A fabulous friend and most trusted confidant shows up at your door every morning wearing scrubs and a stethoscope.

You have ever been told that your trached child couldn't possibly take a bath in a bath tub with...gasp...water in the bottom of it!!

On the first night without night nursing, you yell, "Hey, look at me!  I'm locking the front door for the first time in three years!"

Sunday, July 8, 2012

You Might Have Home Nursing If...

You take another adult to every doctors' appointment your child has and are frequently asked if said adult is your husband's mother because you look nothing alike.

You've ever been asked if the other adult with you at a doctor's appointment is your child's "Other Mom" because she's not wearing a nursing uniform.

You no longer have a parking spot in your own driveway and have to play musical cars with someone you have told 100 times where to park so that you can leave for the job you're not allowed to be ten minutes late to everyday!

You spend your so called free time watching nanny cams making sure the well-paid adult is sleeping or doing something that you don't approve of.

You had to get it written in the plan of care for the night nurse NOT to wake your child up to change her diaper.

You make a checklist of things to be done and have the RN sign off on it like a reward chart for a 2 year old.

You hide your favorite sodas because they're apparently your nurse's favorite too.

Your child's doctor doesn't look at you when he is asking questions.

You know to stack your dishes that couldn't fit in the dishwasher so that you don't hear clinging or full-blasted water at 3:30 a.m.

You feel like you have to leave the house so that you can stay qualified for nursing.

The nurses lie about things and you know they are, or tell two different things to each parent.

A nurse comes to work sick and tells you that YOU can just take care of your child and she will just sit there--because she really needs the money!

You have a permanent bed next to the kid's bed because you can never get fully staffed.

You have someone who will always tell you what you're doing wrong with your child and how to do it right.

Your other child asks for 24 hour nursing when he needed surgery.

You have a best friend that can actually take care of your child!

Your non-trached kid wants the nurse to babysit them.

You spend your time talking about nursing to your online trach friends while you're waiting for the night nurse to show up.

You dread a coming storm because you know that means your nurse won't come.

When you go to use an item only to find it broken or missing and "no one knows" how it happened.

You hate the 4th of July because your only night nurse goes on vacation for two weeks.

You have to set an alarm in the morning to go sign out the nurse instead of just letting your child wake you up when she wakes up.

A nurse quits because you say you really don't want her to be running her real estate business from your home.

You get "hate" email for having your doctor write an order for "common sense" because the agency told one nurse they would fire him for cleaning dishes he used overnight.

Your best friend is now a nurse.

One of your nurses gets passively aggressively mad at your fabulous room design because she doesn't like suctioning from the right side.

You fire a nurse for knitting instead of actually looking at your child.

Mandatory drug tests come up and three nurses suddenly quit at once.

All three of your regular nurses take a vacation the same week.

Your night nurse calls out and non-trach friends don't understand the big deal.

You instruct your medical director at Medicaid on the definition of medical necessity.

You wonder if nurses eat toilet paper!

Saturday, July 7, 2012


Caleb and Abby are going to be the ring bearer and flower girl in our friend's wedding tomorrow!

This is a pretty pitiful picture taken with my phone and with two kids who weren't interested in giving me nice smiles, but I'm hoping that "A bad dress rehearsal means a good opening night" holds true here.  :)

Friday, July 6, 2012

GI Update

Real quick update on my quest to get one of Abby's feeds cut so that she will be hungrier and eat more orally...

Well, things did not go quite as planned.  Abby has lost 3 ounces since the last time we went to GI (not pounds, ounces.)  I wasn't concerned by that at all, but they were.  She's only in the 10th percentile, and they didn't like that.  Never mind that Caleb is also in the 10th percentile, and I'm a tiny person myself.  I also pointed out that no one monitors a typical toddler to the ounce or requires that he/she get a certain amount of calories a day.  They didn't seem to appreciate any of that.

Basically, they refused to cut a feed.  A "compromise" is to slightly reduce the amount of calories she'll take (60 mls over 24 hours) and bump more mls to the night feeds.  Then, Abby will only have two daytime feeds.  They seem to think this will maker her hungrier...I'm a little skeptical.

I asked what I needed to do to get them to cut a feed, and they said she needs to gain about an ounce a week for at least a month.  Got it!

Off we went to Whole Foods, where I stocked up on ground Chia seeds, Flax seeds, and a Super Fruit smoothie mix.  These are all high in good fat and calories, and also Omega 3s!  2 tablespoons of Flax seed gives 80 calories...that's quite a boost per ounce, and I usually need to thicken up the veggies after I puree them anyway.  Woo hoo...let the weight gain begin.


*  Caleb's buddy had a birthday party last Saturday, but they had to postpone it due to not having power at their house.  Caleb couldn't understand why they couldn't still have it.  I told him they wouldn't be able to make food and no one could go to the bathroom.  His reply, "Well, we can just bring our own food and they can get porta-potties!"

*  He started a conversation about the Bible with, "Well, as God said in the book of Genesis..."

*  "What language did Adam and Eve speak?"

*  He came in after his nap while I was folding laundry, and A Baby Story was on.  The woman was having a c-section, and Caleb asked if I had to have surgery when he was born.  I said no, there are two ways to have a baby.  (Stupid!!!)  "Oh, well what's the other way?" he asked.  "Uh...from your bottom."  "Ohhhhhh!  So THAT'S why babies are so dirty when they come out! They're covered in poop!!!"  Exactly.

Thursday, July 5, 2012

You Might Have Home Nursing If...

When you end a phone conversation at 3 p.m., 11 p.m., or 7 a.m. so that a nurse can sign out.

You have given your husband a dress code so that he doesn't walk around the house in his underwear.

Your non-trached kid thinks he has a playmate who comes to visit every day.

You have to tell the nurse you want to be the one to calm down your crying child.

You have an urge to walk around your house naked, just because you can't.

Your typical four year old tells you she wishes you had an office she could call when you are not nice!

You have ever had someone try to tell you how to bathe your baby.

You wonder if other professions allow you to be 20 minutes late on a regular basis without penalty.

Your five year old blames messes and lost items on the nurse.

Your nurse makes more of a mess than your two children.

You groan when the caller ID says it is your nursing agency.

Your kid uses the oximeter as a "Pavlovian" call, bending her toe to make it go off and get people to come to her.

Your kids ask "Is it a Momma day?" when you begin a neb in the morning.

You have an RN there to care for your child, but you still have to babysit the nurse!

You feel like you're 16 and have a curfew because you have to be home for the nurse to leave.

You've fired someone, in person, while still wearing your bathrobe!

Your nurse tries to answer questions for you when your doctor asks them.

Wednesday, July 4, 2012

Tuesday, July 3, 2012

Feeding Therapy

Our first official day of feeding therapy went really well!  I got some great ideas and the therapist established a feeding protocol.  Abby will attempt five bites or tastes of something solid, like a puff or a cracker.  Then she'll open her mouth and put an empty spoon all the way in her mouth (this is something she NEVER does with food!) five times.  Finally, we will give her purees, with some sips of a thick liquid every now and then.

This sounds really complicated and tedious, but it's not.  She does the tastes of the puffs and the empty spoon pretty quickly, so the vast  majority of the time is still spent feeding.  But the hope is that practicing putting the whole spoon in her mouth with an empty spoon will transfer to opening her mouth for food.  I'm already seeing improvements on the first day!

We go to GI on Friday with the hope that she will agree to write the order that Abby will only get gtube feeds to fill in the caloric gaps.  Ie:  if Abby eats 150 calories in one sitting, then she only gets 30 calories of formula to make the total 180 calories she is supposed to get.  Our therapist thinks this is a great way to get Abby hungry while making sure she maintains her weight.  She commented on how closely I'll have to follow calories if we do that, but I don't mind.  I'm already doing that anyway, so it's really not any harder.

We will go to feeding therapy biweekly, where the therapists will make changes to the protocol as Abby "masters" certain skills.  I really, really like the therapist, and she does really well with Abby. She is very positive and encouraging, which Abby just eats right up!

It was a good appointment, and I'm excited to have a plan.  (I like plans, remember?!)

You Might Have Home Nursing If...

For those of you who have never experience home nursing, it is...interesting.  It could be wonderful....or horrific, depending on the nursing staff.  I've personally had both experiences, and am now (thankfully!!) experiencing the wonderful side of home care.  When you have nurses you can trust, they can be a lot of help and you can reduce your stress a bit.  But it is definitely interesting.

I wanted to give my readers a glimpse into the lives of families with home nursing.  I polled my online trach group, hoping to get a few funny comments about life with home nursing.  I was figuring I'd have about 15 or 20.  The result was so much more than I hoped for!!  Just 2 hours after I posted, I had 27 comments, and it grew to 77 just in the first night--many of them writing multiple ideas.  They have just kept on coming from there, and some of them cracked me up!

Because of the overwhelming response, I've separated this into a couple of different posts so that you can thoroughly enjoy them and hopefully learn a little more about life with home nursing.

You Might Have Home Nursing If...

You hide baby products you don't want lost or misused and find them stashed in random places.

You find yourself asking if you can hold or rock your own kiddo.

You leave the door unlocked all night so you don't have to be up to let the day shift nurse in.

You have signs on the walls and dresser drawers and shelves labeling where EVERY. LAST. THING. goes and still have things turn up in unexpected places.

You have food labeled in your fridge.

You can never plan ahead, for one of your nurses are sure to call in when you do.

You need doctor's orders on how to take care of your child.

You have a working coffee pot and a pot of coffee on most days, even though no one in your family drinks coffee.

You have formula and medicine splattered all over your walls.

You don't get a night's worth of sleep.

You pick up after someone who isn't your child.

A box of 100 powder-free vinyl gloves in used up in 24 hours or less.

You worry that in your exhaustion, you might leave your undies on the floor in the bathroom.
Your night nurses do not show up, and neither do your supplies that you ordered a week before.

You have to remember to close the bathroom door when you get up to tinkle in the middle of the night.

You divide the cabinets in your kitchen for the kids who get nursing and "general" family cabinets.

You call the table in the study "The nursing area."

You refer to the front room where your medical kids sleep as "the ward."

You post printed rules in your bathroom.

You can't figure out how the formula got on the ceiling...floor...walls...mirror...behind the bed...

You can't give your child Tylenol because it wasn't specifically listed in the care plan.

Your non-trached kid thinks 3 a.m. is a good time to get up and watch TV with the adult awake in the next bedroom.

You hold your pee all night so that you don't have to get up to put clothes on.

You don't have any privacy at all...even when we argue, they hear everything!

You sleep with a bra on for 3 years.

You make sure showering, clean clothes, and makeup come before coffee.

You buy the cheapest available toilet paper, napkins, and paper towels as you run out of your 6 month supply in 15 days.

Your nurse is 10 minutes late every day because of a train that only exists for them...they would get fired from McDonalds for less!!

You have to tell your spouse, "The Garage!!" so you can fight.

You have someone interrupt everything you say to tell their stories, even when you're not talking to them.

Your fridge is full of food that is not yours.

Monday, July 2, 2012

Eating Updates

Abby is eating a lot more by mouth now.  In fact, she ate the equivalent of a gtube feed (180 calories) TWICE yesterday!!  I was so proud of her.  We've been working really hard at it, and have been striving toward a goal of 2 ounces of food a meal.  (That's 2 ounces of majorly beefed-up, high calorie food!)

Our first feeding therapy is on Tuesday, and I am really excited!  I'm hoping that they will cut a feed so that Abby can be hungrier during the day and eat more by mouth.  Of course, I don't want her to lose weight either, but our weekly therapy will be keeping close tabs on her weight.  I think this feeding therapy is a big step in the right direction, because right now Abby eats, either by mouth or by gtube, pretty much all day long.  She's never hungry!  I'm excited to hear what they have to say, and am especially looking forward to Abby going under the care of a GI who specializes in feeding therapy.  He will be the one "in charge" of her feeds, so I'm hoping he will be aggressive in getting Abby to eat by mouth.

Boring post...sorry!  I'm having a little bit of writer's block, but I'm working on a great collaboration "You Might Be _____ If..." post that I think you're going to love!  Vague?  Perhaps!  Look for it soon though!  :)

Sunday, July 1, 2012

Updated: You Might Be an RMH Family If...

Some of my RMH friends added a few extras to my list!  :)

...You notice a soda can in the trash and consider reaching in and pulling the tab off...and sometimes do!

...It seems like complete strangers "get" you more than people you've known for years.

...You wear your red and yellow bracelet with pride.

...Your children have a deeper understanding of what it means to love others unconditionally.

...Checking the resident mailboxes is the highlight of your kid's day.

...Your five year old has ever stood in the middle of a McDonalds telling customers how important it is to put change in the donation container.

...Your family is a whole lot bigger these days!

...You have ever wished for "Activity Hour" when you're at home and have run out of things to keep your kids busy until bedtime!

...Tears are shed for families going through a particularly tough time.

...You get used to taking an elevator up two stories to get to your bedroom.

...You have no problem striking up conversations with people you don't know.

...Your children get ridiculously excited about going to the hospital because it means staying at RMH.

...You get a huge smile on your face whenever you talk about "The House That Love Built."

...You understand that "family" is more than blood lines.

...You notice a soda can in the trash and consider reaching in and pulling the tab off...and sometimes do!

...It seems like complete strangers "get" you more than people you've known for years.

...You wear your red and yellow bracelet with pride.

...Your children have a deeper understanding of what it means to love others unconditionally.

...Checking the resident mailboxes is the highlight of your kid's day.

...Your five year old has ever stood in the middle of a McDonalds telling customers how important it is to put change in the donation container.

...Your family is a whole lot bigger these days!

...You have ever wished for "Activity Hour" when you're at home and have run out of things to keep your kids busy until bedtime!

...Tears are shed for families going through a particularly tough time.

...You get used to taking an elevator up two stories to get to your bedroom.

...You have no problem striking up conversations with people you don't know.

...Your children get ridiculously excited about going to the hospital because it means staying at RMH.

...You get a huge smile on your face whenever you talk about "The House That Love Built."

...You understand that "family" is more than blood lines.

...When you don't think about what's for dinner, but who's bringing dinner :)

...It doesn't phase you to open your freezer and discover breast milk belonging to your neighbor.

...The chair in your room is not used for sitting, but as a gathering place for stuffed animals left in your mailbox!

...You feel perfectly comfortable sharing the most personal details of your life with a perfect stranger.