Life as a Leach

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!

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...

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 ...

Welcome home, Daddy!  We missed you!

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!

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 wate...

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. :)

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 knowledgea...

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!

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 crus...

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 cl...

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 hands...so what did we do?  Have ice cream for dinner ...

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!

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 ...

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 h...

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...

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.  :)

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 ...

*  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.

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 d oesn'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...

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. ...

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 differ...

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 cha...

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. ....