Thursday, June 30, 2011

Relay for Life


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.  :)

Some Like it Hot!

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 happy (and not panting!)

I started out following a recipe, but have since tweaked it to make it my own.  Here it is!

PS:  I don't really measure.  Shhhh....don't tell my middle school home economics teacher!

Tomato Salsa

3 average-sized tomatoes
2 cloves of garlic (I use the minced in a can and it is perfectly fine!)
1/2 a cup of fresh cilantro leaves (definitely go fresh on this one)
1/2 to 3/4 of a small onion
1/2 a jalapeno pepper (add more for spicy, less for mild.  1/2 is what I call medium)
a few shakes of salt (I told you I don't measure!!)
splash of lemon juice

If you have a handy-dandy food processor, throw all of that into the processor and go to town!  If you don't, then I suggest you go here and buy one.  You won't regret it!  :)  I guess you could do it in a blender, but the food processor I have is a whole lot easier and much less to clean.  Even more difficult, I suppose you could hand-chop and mince all of this...no thanks!!

See the finished product? 

 

Stored in a Lock and Lock container, of course!  (These days, that's pretty much a given!)  The pictures don't do it justice.  It is yuuuuuummy!

***I received no compensation for this post.  I just figured that you might like to get a yummy salsa recipe...and a nice food processor, if you're in the market!

Wednesday, June 29, 2011

Ventless

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!

Wordless Wednesday

Feeding Fail!

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....

Tuesday, June 28, 2011

Preschool 101

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 process now of labeling Caleb's room with some words so that he will begin to recognize them.  I'm not going to do too many, but the basics like chair, dresser, bed, closet, desk, etc. 

*  Matt taught Caleb how to add by having him touch his fingers to his chin, thanks to a suggestion from a teacher in our church!  Ex:  5 + 2 =  Caleb will count up to five by touching fingers on one hand to his chin, then use two fingers from his other hand to finish.  He's really accurate this way and it has helped to build his confidence a lot.

*  At restaurants, we play the "Sugar Game" while we're waiting for our food.  We put out a whole bunch of sugar packets and either take one or two at each turn.  It's a game of strategy and math, because you're trying to make sure that you don't take the last one.  If you do, you lose!  He really likes this game, and it has given us many opportunities to teach him about good sportsmanship too.  :)

Starfall is a great website for early readers.  There are links for each letter that give the sound, a word that starts with that letter, and usually a fun way to remember it.  There are also some fun activities (Caleb really likes to build his own snowman and gingerbread man!), but the vast majority of the activities are very educational.  There are a lot of books on there that can be read to you or your child can read.

*  One of Caleb's favorite activities to do is to read a Tumblebook.  These are real books that are narrated and animated online.  Our local library has a subscription that allows everyone free access!  You do not need to type in a code to view these.  There are books on a variety of levels, and you can either have the books read to you or you can read them at your own pace.  Caleb LOVES these books and gets SO excited when he finds the "real" book in the library!  Tumblebooks have bought me a few minutes while I'm on the phone many a time! (They're a fabulous alternative to the TV!)  :)

*  I just found this on my mom's class website, but it looks like a good activity Caleb would like.  You can match pictures to their corresponding beginning sound, and they also do long and short vowels.  We'll have to try this one out!

iXL Math is really great too!  You can do up to 20 problems a day without a paid subscription.  This is kind of a one-stop-shop because they cover so many different skills on this website.

I hope that this might help some of you with preschoolers.  As you might imagine, we don't have a lot of "free" time around here.  I just use my teachable moments and try to keep him as interested as possible.  Good luck!  :)

Monday, June 27, 2011

Swim Lessons

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.  :)

5 Things

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 had two others and has never had a "reaction" like this, so I think we'll stick to those! 

3.  Last week was an extremely busy week and I'm looking forward to a calmer one.  I am exhausted! 

4.  Caleb can't get a good night's sleep because Bat Girl keeps waking him up to do his job (which is to fight bad guys, of course.  He is Batman, you know.)

5.  Caleb and I are doing school time each day.  It's about a half an hour, but I gage his interest.  He has a bin with reading, math, and writing materials. He also has some special pencils that can only be used for school (Smencils--they smell really good and are made out of recycled paper...and they are a fabulous motivation to write!)  His favorite part is ringing the school bell and calling out, "School time!"  He then rings it when we're done and calls, "Recess!"  It's pretty cute.  He's doing a great job with his work though.  He's pretty much mastered all of the basic sounds and we're starting to work on a few blends.  He's great at counting and can do some basic addition on his fingers.  We will be starting some of the basic sight words soon.  We also have several websites that he really enjoys that cover both reading and math skills.  He doesn't see those at "school time" because they're on the computer, so I consider them an added bonus.  :)

Sunday, June 26, 2011

Saucin' it Up

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! 

Cousin Love


The cousins seemed to enjoy their swinging!  :)

Saturday, June 25, 2011

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!

Friday, June 24, 2011

I Can Do All Things

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 after I had this little revelation, my attitude got better!  My day didn't, but I was able to laugh and just shake my head a bit.  :)  Funny how when you are reminded that God is your strength, you're able to deal with a whole lot more.

Fast forward to the ride home from the grocery store, when I hear "Strong Enough" by Matthew West.  I'm not a huge fan of his music, but the lyrics definitely caught my attention.  Is God trying to teach me something, or what??

So here is a video that actually includes a clip of Matthew West sharing his motivation for the song. 



Side note:  I had no idea that Samaritan's Purse did disaster aid in the U.S.  My ignorant self thought they only went to third world countries.  Little did I know!

Giggles

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) :)

Thursday, June 23, 2011

Interesting Article

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 think our pediatrician does it at her 12 month appointment), so she does not currently  have an immunity.  We can't live in fear, but we will certainly take the precautions needed!

Here is an excerpt from the article:

Almost a decade ago, measles was declared eradicated in the Americas,


thanks to widespread vaccination efforts. But outbreaks in Quebec and

several of the United States show that Western Hemisphere countries

are still not immune to the virus, which can be imported by travellers

and quickly infect pools of the unprotected. And the number of those

vulnerable to measles may, in fact, be growing, as some parents choose

not to vaccinate their children for various reasons, among them fear

of possible side effects or a belief that measles and other infectious

diseases are merely a benign rite of passage in childhood.



Quebec's outbreak, which began early this year [2011] and this week

jumped to 330 confirmed and suspected cases, has been traced to a

traveller from France, where uptake of the measles, mumps and rubella

[MMR] vaccine hovers around 60 per cent of the population, far below

the 90-plus per cent rate in Canada. Information provided by Quebec

health authorities shows most of those infected were unvaccinated or

inadequately vaccinated, making them easy targets for the highly

infectious virus, said Dr John Spika of Canada's Public Health

Agency.



While vaccination schedules vary across the country, many

jurisdictions call for a 1st dose at 12 months old and a 2nd before

admission to elementary school. "We're looking at a problem that is

primarily in high schools," said Spika, director general of PHAC's

Centre for Immunization and Respiratory Infectious Diseases. "Most of

their cases, over 60 per cent, are between the ages of 10 and 19. The

data that we have received would suggest that a high proportion of

those high-school-aged children may not have received any vaccine. Was

it because they're Quebecers born and raised whose parents refused

vaccine or did they immigrate to Quebec after the school-entry check

and never received vaccine in their home country?"



What is known is that it takes 2 shots of the MMR vaccine to fully

protect against measles. In 1995-96, before Canada moved to a 2-shot

schedule, there was a large outbreak that public health officials

predicted would have risen to 20 000 cases if the 2nd-dose program

hadn't been introduced. And Quebec's epidemic may not be an isolated

occurrence in Canada, said Spika, noting that a small outbreak

occurred in Vancouver during the 2010 Olympics, resulting from the

importation of 3 different strains carried by overseas visitors to the

games. "The 3 strains spread and then died out because there weren't

enough susceptibles," he said. Cases could still pop up anywhere in

the country, he said. "If measles got into an unimmunized or

inadequately immunized group of kids, yes, that could happen."



Far from being a trivial disease, the respiratory infection marked by

a widespread skin rash can result in often severe complications: ear

infections that in some cases cause permanent hearing loss;

potentially fatal pneumonia; and encephalitis, or inflammation of the

brain, which can lead to life-long cognitive impairment or even

death.



In fact, measles kills about 165 000 children a year worldwide,

primarily in low-income countries. While that number is still

unacceptably high, infectious disease experts say it is a far cry from

the 750 000 deaths reported in 2000, which predated a massive global

immunization push.



So why would anyone hesitate to have their child vaccinated? A study

by the US Centers for Disease Control and Prevention, published this

week by the journal Health Affairs, suggests parents have a number of

concerns that undermine confidence in vaccines. In the authors' survey

of parents, most reported at least one worry over immunization,

including that children: (1) suffer physical pain from shots, (2) get

too many shots in one doctor's visit, (3) have too many vaccines

before age 2, and (4) receive vaccines containing unsafe ingredients.

One of the most controversial issues related to the MMR vaccine is the

fear that the inoculation can lead to autism spectrum disorder,

despite repeated studies that have shown no causal link between the

vaccine and the developmental disorder.



Over the last decade, there was a resurgence of measles -- and mumps

-- due to a dramatic drop in vaccination rates in the United Kingdom

and some other European countries following a 1998 paper in The Lancet

that linked the MMR vaccine to autism. The journal retracted the paper

by Andrew Wakefield and colleagues in early 2010 after the data

presented was discredited. An investigation published by the British

Medical Journal in January 2011 showed that the research by Wakefield,

who has been stripped of his licence to practise medicine in Britain,

"was an elaborate fraud."



Yet vaccination rates have been slow to rebound in those countries,

in part because some people continue to distrust the vaccine. Dr Heidi

Larson, a senior lecturer at the London School for Hygiene and

Tropical Medicine, suggests that part of the reason the notion about

autism persists "is there's a very proactive group of parents who have

autistic children or have neighbours who have autistic children and

who are absolutely convinced that that's the cause of it. This is what

they believe," said Larson, who published a study in The Lancet this

week looking at the reasons behind an apparent loss of public

confidence in vaccines. "And I think we understand the power of

belief," she said in an interview from London. "From a medical

perspective, you want to believe that if we've got the scientific

evidence, that's enough. And it's just not enough for a lot of people.

It's challenging, but I think the medical community needs to come to

terms with the fact that it's not going to be resolved by giving

better facts to each parent about who can benefit ... What's really

important is that we change the way of interacting with those who are

still vaccinating and make sure that they are confident and that their

questions are being answered."



In his view, said Spika, the autism link has been "totally debunked",

and the best way for parents to protect their children is to ensure

that they've had 2 doses of the vaccine. "The measles vaccine is quite

safe, and there's no reason why one shouldn't give the vaccine."

--

communicated by: HealthMap alerts via ProMED-mail

A Peek Inside My Fridge and Cabinets

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 entire boxes of snacks would mean that about 1/2 of the box would go stale and be wasted.  Since then, I've started splitting the boxes in half and putting them in two Lock and Lock containers.  Since they're airtight, they don't go stale!  It's worked really well and then we don't waste food.

This is Caleb's snack basket (I have a "Snack Shop" where he "buys" snacks...I need to blog on that sometime!)  Lots of Lock and Lock in here because the stuff doesn't go bad this way!


In case there was ever any doubt, I definitely do use Lock and Lock on a daily (hourly, minutely...) basis!  It's a part of my everyday life. :)

Wednesday, June 22, 2011

Let the Vent Weaning Commence!!!

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. 

We'll be alternating weeks with what is changed.  For example, we'll change the breath rate this week, then take her off for 10 minutes next week, change the breath rate the following week, then take her off for 15 minutes the following week.  That way, something is being changed every week. 

Eventually, we'll go in the hospital for a few days for the final weaning--but that won't be for a while.  We'll do most of the work at home, which I like!  The doctor also assured me that Abby can be weaned year-round and that we don't have to worry about cold and flu season like our ENT warned.  So if we don't finish this summer, there's not a time crunch.

I really like our new pulminologist and the clinical nurse that works with her.  They were both with us for about an hour coming up with our "plan of attack," and I really appreciated how much time they took with us.  I left there feeling very confident and excited!

Soooooo...as son as we got home and got settled, what did I do??  Well, I took Abby off of her vent, of course!  :)  I've got permission now!!  Of course, I put her pulse oximeter on so that I could monitor how  much oxygen she was getting and make sure her heart beat stayed steady.  I also decided to get some toys and play with her so that she wouldn't notice she was off and get worked up.  Turns out, I needn't have been worried!  She was smiley and playing and did fabulously!  I put her back on after 2 minutes only because I didn't want to wear her out, not because she was desatting or breathing hard.  Yay Abby!

Thanks for all of your prayers and well-wishes today!  I couldn't have asked for a better appointment!  :)

This and That

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 8 month birthday...and as one friend put it, "The perfect day for a vent-weaning date!!"  I sure hope so.  I'm not going to lie--it's going to be rough if our pulminologist says we have to wait.  Waiting means probably next April, because of the small window we're working with...and April seems very far away right now.  Of course, our "going home day" seemed very far away at one point, and just look at us now!  I can do all things through Christ who strengthens me...I repeat that verse about 156 times a day!  If God wants Abby to be on the vent longer than I do, then so be it.  "His thoughts are higher than mine..."

My controversial post has stirred up some emotions, but thanks for being so polite about it!  As predicted, I have received comments from passionate people on both sides of the fence.  Honestly, I can see both sides on this one.  I lean much farther onto the "vaccinate" side, but can kind of understand why some people choose to delay some vaccinations.  I still don't agree with choosing not to get vaccines at all (with the exception of Hepatitis B, since that's a risky behavior disease anyway.  It's important for kids who are in the hospital a lot, but probably not for your typical child.), but I like Davey's idea of getting all vaccines--just spaced differently.  Their (just born yesterday weighing 10 lbs 5 oz!!!) son will be getting a vaccine every month instead of multiple vaccines every two months.  I think that's a good way to play it safe without putting others at risk.  As a mom of a kid who doesn't need anything else to deal with, thanks!!  Feel free to read up on the conversations here at the blog and on Facebook.  People have some interesting thoughts.

Alright, it's time to vacuum and mop.  I'll see you on Monday!  :)

Tuesday, June 21, 2011

Controversial

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...and he could catch one of those diseases and bring it back to Abby. I can't very well keep him out of our home, now can I?  Not to mention the fact that I'm a teacher who comes into contact with countless germs (shutter).  I can't wear a mask for the rest of my life when I'm around Abby.  Those who  make the choice to delay or deny vaccinations for their children can expose my children to deadly diseases.

I also feel like I owe it to my children to protect them from the things I can control.  I couldn't keep Abby from getting CCMS; no pill would prevent her rib-gap anomaly; a shot wouldn't be able to keep her from having a trach and a vent...but I can keep her from getting the Measles!

Not to mention the fact that some of these diseases are deadly!  If your child does make it, he or she could have life-long problems as a result. 

I have friends on both sides of the fence, and I am not looking for a fight.  I'm a researcher too and thought long and hard before giving Caleb the Pertussis vaccine (I had a severe reaction as a baby and nearly died).  Thankfully, he has been perfectly fine with all of his vaccines, and so has Abby.  I choose to vaccinate to protect my children and others! Thoughts?  Ideas?  Comments?  Other articles?

Remember, I'm not looking for a fight!!  I'd love to have a polite discussion about it though.  :)

Monday, June 20, 2011

Eyes

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!  I'm a fighter!

She was looking at her daddy here.  :)

I'm looking deep into your soul!

Uhhhh...is this safe, guys?  I'm not too sure about this...


Definitely up to no good...

Something is apparently very funny...or else she's making fun of somebody!

Sunday, June 19, 2011

Are We There Yet?

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 decannulation, sipping on an ice-cold glass of freedom and privacy!  :)

But then God reminds me that if I'm constantly focused on getting there, I'll miss out on all of the sights along the way:  Caleb's interactions with his sister, Abby reaching all of those important milestones on her own timetable, the time when we take a huge step and actually go on our first family vacation...

I guess it's the whole stop and smell the roses philosophy. While it's hard and I really want to just get there, I am also learning to see the value in the sights along the way. I don't want to miss out on all of those because I'm so focused on my destination.

Matt and I have an amazing opportunity to share with SO many people in a way that we never would have if Abby had been born healthy.  I can't even tell you the number of meaningful conversations I have had, or the times I've been able to share my heart.  We have said from the beginning that if God was going to put us here, then we would try our best to be a sense of encouragement and hope to others.  It's not always easy, and I sometimes find myself dreaming of that day...
So, those are my thoughts for tonight.  Maybe it's all of the spicy homemade salsa I had today that's stirring up these deep analogies...or maybe it's just God teaching me to be patient.  Either way, I hope that you know that I try to be transparent and real with ya'll.  It's not always sunshine and roses, but I'm real.  :)

Medical Update

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 tracking.  We will continue to go back every 6 months for a follow-up.

*  Abby weighed in at 14 lbs 12 oz yesterday at the doctor's office.  She's only gained 7 oz this month, but they said babies often slow down between 6-9 months.  They seemed okay with that weight, as long as she wasn't losing any.  Plus, GI also cut down her fortifier last month, so she's not getting as many calories now. 

*  We got a notice in the mail from the Department of Health and Mental Hygiene stating that although Abby passed her hearing test, she is still labeled "at risk" for late-onset hearing loss.  We'll be getting her checked at one year old by an audiologist, but this isn't a concern for us.  The girl can identify us by the noises we make (clucking, whistles, etc.).  She knows her name and looks around when she hears Caleb's voice.  There's no question that she can hear!

*  These next few weeks will be chocked full of appointments.  This Wednesday is the big pulminology appointment where we will hopefully get a date set for the vent weaning.  Thursday we go to GI (not as big of a deal, since she's seen once a month by them).  Then next Wednesday Abby will be scanned and measured for a helmet to correct the shape of her head.  Yes, in case you have a very good memory, she's had this done twice before!  The first time, the company wouldn't give her a helmet because they don't work with trached babies (but didn't think to tell us that before they scanned her...).  The second time, we got her fitted and everything was great until we found out that she had to be preapproved by Medicaid.  Since this means they would be paying for it (!!!), we didn't want to do anything to mess it up!  Unfortunately, the scans are only good for 2 weeks because her head will grow.  Sooooooo...we're on to scan #3!  (but who's counting?)  We already have the fitting date scheduled and have received the preapproval, so hopefully this will be the last hurdle.  It's been a bit of a difficult process, but we are thankful we've found a company who will take Abby...and even more thankful that Medicaid will pay for it!!  The helmet is extremely expensive, and private insurance won't pay for it.  Have I mentioned recently how grateful I am that Abby is on Model Waiver?!?!

So sorry...I got off on a bit of a tangent there, now didn't I?!  :) 

*  We're really hoping for good news at this pulminary appointment.  We have a very small window as to when she can be weaned from the vent.  It needs to be this summer because she has surgery for her cleft palate in September (they don't want her unstable before the surgery), and they won't do it during cold and flu season.  Basically, if it's not done this summer, we'll have to wait another year.  I'm not going to rush the doctors into something that Abby's not ready for, but I'm really hoping our pulminologist thinks she's ready!  Weaning would take place in good ole MWPH over the course of about a week.  The goal is total weaning, but at least during the daytime.  Please pray for that...this is one hospital stay that I will gladly do!!  (Plus, I'm kinda excited to say hello to our old friends at MWPH!) :)

Whew, I think that's the end of the medical updates.  We're hoping for good news at the pulminary appointment and are trying our hardest to keep Abby out of the hospital with this infection.  So far, so good!

Happy Father's Day!

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!!!

Saturday, June 18, 2011

The Same Kind of Normal

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 kind of normal and that we need to appreciate Abby just the way she is instead of comparing her to someone else.

His reply was, "Yeah, but when she gets her trach out, she'll be the same kind of normal as Anna." 

Out of the mouths of babes!  :)

I'm Not a Paper Cup

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.

Friday, June 17, 2011

For Your Listening Pleasure...

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.


Thursday, June 16, 2011

For This Child I Prayed

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!)