Life as a Leach

If you've never done Relay before, you definitely need to.  It is a huge celebration of life, and a ton of fun...even in the rain and thunderstorms! Weren't these clouds cool?!  A big storm sent us to our cars right after this, but then we had a double rainbow!  (Too bad my camera was in the car for that, but I didn't want to take chances of it getting rained on!) My dad is a 9 (I think) year kidney cancer survivor.  Yay Dad! This is the wonderful Phelps family, with Jacob riding on his daddy's shoulders.  Jacob has been in remission about a year and a half (and was recently decannulated!!) Seriously, I look forward to Relay every year.  It is one of the most fun, gratifying, beautiful events our county does.  :)

I have recently discovered my love for homemade salsa...and for making it! You see, I recently received a manual food processor from this awesome parent , who also happens to be a Pampered Chef representative!  I have seriously used it almost every single day.  By just cutting a tomato in half and then fours, you can dice it into a salsa!  I have used it for omelet filling too.  It works really well! My first salsa attempt was a little spicy because I added the whole recommended jalapeno, but yummy for my I-like-it-hot taste buds.  (Did I ever tell you that I once signed a waiver to try a hot sauce and ended up burning my esophagus?  True story!)  I also made a delicious peach-mango salsa that was for the milder ones in the crowd.  The tomato salsa was a real crowd-pleaser, spiciness and all.  Even the kiddos liked it.  Now that I've learned how to make it hot, medium, or mild, I think it will be a little easier to keep everyone h...

As promised, here are some pictures of Abby ventless!! Bonus:  she's also sitting up by herself in the first two!!  :)  (The Boppy is just back behind in case she falls, but it's not supporting her.  The work is alllllll Abby!) Her fat little neck almost covers the tube!  We actually have to be really careful that it doesn't, because that would block the airway.  She actually fusses when I put her back on the vent, which I take as a very good sign. This piece is called a Humidivent, and it is what Abby will wear from now on when she is off of the vent.  It helps keep moisture in the trach and helps to prevent mucus plugs.  We've noticed an increase in plugs since we've begun taking her off, so we're glad that these came via UPS today!! Can you tell she's tired?  She fell asleep soon after this was taken.  I think I wore her out!

I originally took this video to document Abby's feeding for her therapist.  Little did I know that this spunky girl was feeling way too silly to eat!  Last time I feed her in the bouncy seat....

I figured I would write a bit more detail about what I do with Caleb for "school."  Some of these activities are daily, and some are sporatic.  Caleb is the kind of kid that loves to learn, but on his terms.  I capitalize on teachable moments around here! *  When Caleb was learning his letters, I would write all of the letters of the alphabet mixed up with chalk on the driveway.  Then, I would call out a letter and we would both try to find the letter and land on it.  The person who got there first got a point.  He would run, skip, ride his bike...whatever his fancy at that time!  We have also done it with sounds, and I imagine I could alter it a bit to make it work with the blends we're beginning now.  ("What two letters make the 'br' sound?")  I'm even thinking that this could work for basic addition.  Hmmmm... :)  It's pretty fun, and it lets him be outside and be active while we're learning. *  I am in the pro...

Caleb takes swim lessons from the very same person I did!  (She was also the director of our musicals in middle school and high school, so we go WAY back!) He did really well this year and is definitely getting braver in the water.  His teacher was encouraging him to put his legs behind him and kick.  At one point, she asked, "Caleb, where are your legs?"  His reply:  (holding up his knee) "Right here!"  :) He's willing to put his whole body under water now and is learning to paddle with his hands a bit. This is a far cry from last year, when he spent basically the entire week flirting with the cute girl in his class.  He might not be able to swim, but he'll have a girlfriend!  They just won't go on a date to the pool... This year, Matt had a "No flirting!" talk before the week started.  Thankfully, there are only 2 other kids in his class and the only girl is too old for him.  :)

1.  I carried Abby without tubes for the very first time this evening!  It was an awesome feeling.  (Yes, I cried.  I didn't let you down!)  She is up to 5 minutes 4x a day and could do longer.  We are waiting for our equipment company to send us humidvents, which attach to the trach and provide humidity to keep plugs from forming in the trach.  Once we get those, we will feel more comfortable doing it for a little longer (like maybe bath time???)  :) 2.  I can't wait for this antibiotic Abby is on to be over (tonight is her last dose!)  Let's just say it hasn't been too easy on her tummy and I've been doing a whole lotta laundry these last 10 days!  I'm nearly out of Oxyclean, thanks to all of the soaking going on!  The other day, she wore 5 different outfits.  Every single day, I've had to change her clothes at least once because of a blow out.  Lovely...she will not be taking this antibiotic again!  She's h...

Abby has decided that, after much deliberation, she does love her saucer.  While just last week, she wouldn't spend two minutes in it, she will now sit and play contentedly for quite some time!  She interacts with her toys and it is helping to make her legs stronger, so we're happy that she likes it now. Looking at the sun Reading a book! She's learning to push up a bit now! Her legs are still a little short, so we give her an extra bit of cushion. I think she thinks the sun can talk, because she sure was carrying on a conversation with it! These things spin, rattle, and creak. She likes the puppet, but not when I put my hand in it! Abby is also learning to spin a bit in the saucer, which is no easy feat when you're attached to tubes.  I put her in one place, went into the kitchen for a second, came back, and she was in another place! 

The cousins seemed to enjoy their swinging!  :)

Abby went on the swings for the first time!! Doesn't Matt look ready to do something really evil here? She liked watching the birds fly across the sky.  The girl is a nature lover! The metal made a fun sound when she hit it, so that entertained her when she got tired of swinging. Why yes, I did, in fact, disinfect the entire seat with alcohol pads.  I know you were wondering.  I do have a reputation to uphold here!

Today was "one of those days."  I actually climbed back into my bed, pulled the covers up over my head, and asked Matt if I could restart...all before 9 a.m.!  (Yes, I am well-aware that some of you were still sleeping then!)  It was just a whole bunch of drama today that finally became laughable when it began to pour just as I turned into our driveway...with a van full of groceries and a grumpy boy that didn't want to get out of the car! In the shower this morning, I was repeating "I can do all things..." to myself as I often do when things get rough.  But you know what I realized?  I was leaving out the rest of the verse!  I was subconsciously telling myself, you can handle this!  You've got this!  No big deal!  You can do this!   But if you're familiar with the rest of the verse, I'm not the one who can do it.  I can do all things through CHRIST who strengthens me.  Philippians 4:13 It was pretty amazing that a...

Check out this giggly girl!  You can hear her so much better on the Passey--Muir! (One of her nurses is bouncing her while I video) :)

My aunt, who retired from being the head of infection control at our local hospital (yes, germaphobia runs in the family!), often sends me updates on disease outbreaks.  It's good to be informed, especially when Abby's health is at risk.  She recently sent me an update about the Measles outbreak, knowing that I am interested it is and the affect non-vaccinating is having on people world-wide.  It was a really long report sent in email form, but I have cut-and-pasted a segment of it that goes along with the discussion about vaccinations.  It affirms a lot of what was in the last article I posted about how the information linking vaccinations to Autism has been proven false and that the man responsible for that link has since been stripped of his medical license.  This current outbreak concerns me because so much of it is taking place in the hospitals...where we spend an awful lot of time!  Abby won't get the MMR vaccine until between 12-15 months (I t...

I have really found a love for the glass Lock-and-Lock products.  I put a lot of leftovers in them so that I can put them right in the oven or microwave.  I've bought a few more rectangular pieces, in addition to the pieces I was given through L&L Supporters, and I also have some round ones from my last shipment.  They are well-used! The plastic ones store a lot of different kinds of things...ie: chocolate gold coins that I use during "School Time" with Caleb!  :)  All our various types of jelly...  Look closely here...that round one in the background is extremely useful!  I just got it recently (it's part of a lunch box kit, actually), and I am pretty much always using it for something.  The ones in the foreground are holding celery and cucumbers for Caleb's snacks.  There's also one (without a lid) that's cut off on the left.  We put thawing milk in there! I have a snack drawer for the nurses, but found that putting entir...

Abby had a fabulous appointment today!  We won't be going into the hospital right away to do the weaning, but she will be weaning off of the vent starting tomorrow.  We'll be doing it from home slowly! Starting tomorrow (when our equipment company comes out to change it, since we are not allowed to), Abby's breath rate on the vent will change from 14 to 12 breaths per minute.  This rate will continue to go down by 2 every two weeks (or more if Abby does really well!) The other (and more exciting, in my mind) part of the weaning is that we will be taking Abby completely off of the vent for short amounts of time 4x a day.  We're supposed to start with just a minute or two (depending on what she can handle) and then work our way up until she is doing about 5 minutes this time next week.  We'll talk to pulminology on a weekly basis to report on how she's doing, and they will continue to give us orders to increase the amount of time she's off.  ...

I'm going to have like NO time to post anything over the next few days, so I'm going to be relying on my time-delayed posts I have lined up...I may actually go a day or so without a post!!  I know, craziness!  I have no day nurses for the next two days with Matt being completely unavailable to be home and doctors' appointments in Baltimore on both days (fabulous, right?).  Thanks, Dad, for giving up two days of your vacation to take us!  It is so hard having to depend on someone else to get around because Abby has to be under observation.  *sigh*  Then, we have a youth missions team coming to our church this weekend and family visiting Sunday and Monday.  I really want to be able to update you on Abby's appointments and may be able to write a late-night post (which is normally when I write anyway), but no promises.  Today is Abby's BIG pulminary appointment when we will hopefully get a vent-weaning date set.  It's also Abby's...

Warning: This may cause a ruckus. Let's just all be nice to each other, okay? Recently, a friend of mine, who is also a neonatologist, posted this article on Facebook regarding childhood vaccines. I would encourage you to read it, as I find some of the statistics and information regarding the link between vaccines and Autism fascinating. The basic premise is that because some parents are choosing to delay or refuse certain childhood vaccines, some of these childhood diseases are reappearing after being gone for so many years. This article focuses mostly on Measles, since there is currently an outbreak in the U.S., but alludes to several other diseases as well. Being the mother to a child with a compromised immune system, I have a hard time with the idea of not getting vaccinations. My feeling is that people are putting my child at risk, and that's not fair. Sure, I can keep Abby from going out in public, but what about Caleb? He's at school, church, the playground...a...

By far, my favorite feature of Abby's is her eyes...those deep, expressive eyes!  The other night, we were having a little cuddle time before bed and she was just taking it all in with those look-into-your-soul peepers of hers.  As she was studying me, listening to me tell her how much I love her, her face suddenly broke into this beautiful, full-of-love smile.  And those eyes of hers were just about to burst!  The girl may not be able to talk yet, but she can sure let me know what she's thinking!  I wanted to get a picture of all that smileyness, but I wasn't about to break the mood!  So, I took a mental snapshot and I won't soon forget that look. I L-O-V-E that girl. To ease the pain of not getting to see the beautiful smile first hand, here are some other pictures of Abby in all of her expressive-eyes glory! This was taken on her first full day of life.  She was so sick, but look at those eyes! I'm not giving up, Momma!  ...

You know how kids constantly ask that annoying question, are we theeeeeeere yet???   I don't hear it too much from Caleb yet (please don't encourage it!), but I used to groan on field trips when someone would break out with the dreaded question.  One person piping up would trigger ten more until we had a chorus of whiners.  Uhhhhhhhhhh... I wonder if God ever feels that way about me.  I find myself constantly asking some variation of the same question.  Are we there yet??  Is Abby getting off the vent now?  Is this what our new normal is going to look like?  Are we at the end of the surgeries?  Are we done with weekly doctor's visits?  Huh?  Huh?  Are we?  Are we?!?! I have a hard time being content with where we are right now, because frankly, I don't want to be where we are now.  I don't want to be in the "car," crammed in between nurses and doctors!  I want to be to our destination...that paradise called...

I haven't blogged too much recently about how Abby is doing medically, because there's so much to share about her cuteness!!  So here's an update! *  Abby has developed some kind of an infection at her stoma (trach site).  It's very red and oozy, and it was bleeding yesterday.  They did a culture and a swab of it yesterday, so hopefully they can figure out what it is.  She's on a broad-range antibiotic now to try to kill whatever it is, but they may switch it when they pinpoint the bacteria.  Thankfully, it doesn't really seem to be affecting her breathing.  I hope we can keep it that way!!  Now that she's been on the antibiotic for 24 hours, it only seems to bother her when we actually touch the area.  Other than that, she's been pretty happy today. *  She went to the opthomologist last Monday and got a good report!  Her optic nerves still seem to be within the average range and they noted how well she is trackin...

Cancer survivor, generous, handyman, veteran, computer wiz, Paw-Paw, camper, lover of sweets, patriotic, navigator, Master Gardener, Boxer lover But most of all, he's my dad.  Love you, Dad!!  You're the BEST!!!

Decannulation has been a topic of conversation at our house since my cousin's son was just decannulated.  (Yes, Caleb knows what decannulation is.  He also knows about sterile water, suctioning, apnea, and a vast array of other things four year olds don't typically know.  Can we chalk it up to life experiences?)  Anyway, back to decannulation.  Caleb was musing about what life will be like when Abby is decannulated, and he said, "Then she'll be normal, like Anna."  (Anna is his cousin who is just 10 weeks older than Abby).  Yep, struck a nerve!  You all know how much I hate the "normal" term. But, he's four.  And he doesn't know what he's really saying.  How could I be upset with him? So I took a deep breath, sat down next to him, and used this as a teachable moment.  I explained that Abby is normal, that there is really no such thing as "normal," and that everyone is different anyway.  I told him that Abby is her own ...

This little guy made me laugh. Looks can be deceiving though--he's pretty heavy. The top is a nice silicone. I haven't used him yet, but I'm sure it will be really nice. Plus, I like that it looks like a Starbucks cup. :) I not a big coffee drinker, but I do drink hot chocolate!  I'm thinking that will go nicely in here.

This is my sweet Caleb Boy singing "Our God."  I love the way he interacts with Abby--not just here, but all of the time.  It melts my heart.  Every. Single. Day.

Abby received this sweet frame from her Nurse Megan as a dedication gift.  I think it suits her well, don't you?! We certainly did a lot of praying! Sorry the photography on these is less than stellar.  The flash was causing a glare and I didn't have time to really mess with angles.  I just turned the flash off and took it.  Good enough, right?  I just wanted to show you the frame (and the pretty girl in it!)