Friday, March 29, 2013

Abbyism

It's been potty training central around here....lots of trying with very little success.  But on the rare occasion when we have had success, it's been a party!!  We cheer, we listen to "Call Me Maybe," we watch episodes of Hello Kitty...gotta pull out all the stops when candy is not a motivator!

So...with all of this "potty" talk, it's only natural that Abby reciprocate it.  But it's pretty embarrassing for her to cheer me on in a public bathroom...

"Mommy, did you go pee pee on the potty?  Lemme see.  Yes, you did!  Yaaaaaaaay, Mommy!!!!  You get to listen to "Call Me Maybe" and DANCE!!!"

Snicker, snicker, snicker from the other stalls...who were hopefully other moms who have had this happen to them too.  

Thursday, March 28, 2013

Cerebrocostomandibular Syndrome is NOT a Death Sentence!

I felt compelled to write such a bold title for one simple reason:  it's NOT a death sentence, but all of the research makes it sound like it is.  All of it.  Just check out some of the links on my CCMS page.

I have even found an article (not a medically-based one, mind you) where the author suggests that parents who receive a prenatal diagnosis of CCMS should terminate.  I have written the author to suggest that perhaps he should instead recommend that the parents seek out the best medical care to save their child, but he has yet to change the article.  Maybe I should write him again...

Perhaps you have found my blog and are a parent or loved one of someone with CCMS.  Perhaps, like me, you went straight to the computer right after you got the diagnosis.  I hope that if you learn only one thing, it's that there is always hope.

I'm not naive enough to think that all CCMS stories are as happy as ours is.  But I can tell you that CCMS is not always the death sentence that medical journals make it out to be.  In fact, I have about 10 families who can testify to that statement!  (I've found that the happy stories don't make for such good research articles.)

PLEASE, PLEASE email me if you love someone with CCMS and need some advice and information.  Early, aggressive intervention is KEY to survival.  I truly feel that our push for aggressive treatment is what saved Abby's life.  And if you received a prenatal diagnosis of CCMS, don't believe the lie that your child's life isn't of value.  EVERY life has value....and you will appreciate your child's life even more when you have watched him or her fight for every breath.

CCMS is not a death sentence.  Just look at my girl!


Wednesday, March 27, 2013

The Circus is in Town!

We'll be heading to the circus tonight (minus Matt and plus our dear, sweet "Big Abby") with Starlight Foundation.  Caleb and Abby are both so excited!!  I am so thankful for Starlight.  It's nice to be able to do these special things in a while.

I promise to be a bit quicker in posting the circus pictures than I was with Disney on Ice.  Until then, here's a little glimpse of what we're going to see:

Wordless Wednesday



Monday, March 25, 2013

Calebism

"I'm pretty much just like a secret spy, because I can turn anything into a weapon."  (The boy speaks the truth--it's quite a talent!)

"Aunt Amy doesn't have a deck.  She has a door that leads to nowhere!  I just don't get it.  I keep asking her and she keeps saying that she's going to get one, but she keeps forgetting.  I think it's because she has 4 kids.  That's a lot of kids."

Sunday, March 24, 2013

Germ Pit

Our house is a germ pit, and it's not because of a lack of disinfecting on my end!  Lord knows I've done more laundry this winter than I have ever done in my life, and the bleach/water solution has been my best friend.  However...

*  I was miserably sick a week and a half ago.  I had a fever, chills, body aches, head ache, and nausea.    There isn't much that keeps me in bed (or from going to work, for that matter), but I could barely lift my head off of my pillow without getting dizzy and nauseous.  I was so appreciative to my sister who came over in time to get Caleb off the bus and watch both kids for the evening while Matt was at youth group.  Looking back, it was probably Flu B.  (See below vvv)

*  Caleb tested positive for Flu B on Friday.  He'd had a fever off and on since Tuesday, and it spiked to 104 on Thursday.  He was given Tamiflu and seems to be on the mend.  He's excited to finally go back to school tomorrow--a true testament to his amazing teacher--and I'm hoping this was the last of the winter illnesses.  He's missed 9 days of school so far this year, and every single day has been either because of fever or vomiting.  I am NOT one to keep him home for a sniffle, and it drives me crazy to have him missing so much school.

*  I took Abby to the 90 Minute Clinic at CVS today because she broke out in the oh-so-familiar sandpaper rash of Scarlet Fever.  Her throat looked red to me, so I wasn't taking any chances.  After a ridiculously long wait with a two year old attempting to pull every box of cereal off of the shelves near the waiting area, we were finally seen.  The nurse practitioner was unable to get a good throat culture because Abby's mouth/airway are so tiny and her tongue blocks the view of the back of her throat.  She ended up doing a blind swab, but the test came back negative.  The nurse practitioner said that the rash looked like Scarlet Fever to her and her throat did look red.  Regardless, Abby was given Amoxicillin for an ear infection--shocker.  (This is the right ear that lost the tube and had some hearing loss, but hopefully the infection will be all cleared up by the time she has her audiology appointment on Friday).

*  Matt went to bed at the same time as the kids tonight because he was feeling sick and achy.  Awesome.

STOP THE MADNESS!!!!  NO MORE GERMS!!!!

Or, get it all over and done with before our vacation next week.  Please.

Wednesday, March 20, 2013

Tuesday, March 19, 2013

Hi-Ho, Hi-Ho...

...it's off to feeding therapy we go!

It is easy to groan and complain that I have to drive two hours for all of Abby's feeding therapy appointments.  But I've met so many families at RMH that have traveled across the country--or even from as far as Malaysia!!--to seek treatment, that I am thankful that I only have to go two hours! 

Today will hopefully be especially productive, since we will be meeting with a behavioral psychologist who specializes in feeding disorders.  I'm hoping that she will be able to give me some good ideas on how to deal with some of the behaviors we've been seeing...namely, pocketing.

The pocketing is a real issue because she will literally keep it in her mouth for hours.  She has no problem falling asleep with it, and she's turned purple from choking on something that I didn't realize was still in her mouth.

We've tried lots and lots of different strategies, but none of them seem to be helping.  So, I'm looking forward to hearing some new ideas from the psychologist!

Monday, March 18, 2013

Doggie Update!

We are officially approved to get a boxer from Adopt a Boxer Rescue!  I spoke to one of the head volunteers on Sunday.  Because we're going to be in Baltimore for the summer, we both agreed that it would be best for all involved--especially the poor, confused doggie!--if we waited until after we got back in August to get a dog.

That being said, it is difficult to find a dog that is known to be good with small children.  Most come from difficult circumstances and haven't been with kids before, so it's impossible to know.  They won't place a dog in our house that they are unsure of, because Abby is too little.  So....we left it with the idea that if they find the absolute perfect dog for us that is gentle and wonderful with children, as well as fitting our other requests, then they will give us a call.  Otherwise, we are going to wait until August.

In the meantime, check out this sweet girl named Grace.  :)

Disney on Ice

I am so behind on posting these pictures!  Truth be known, I was very behind in even loading and editing these pictures...like an entire month behind.  :(  

I also realized that most of them were pretty bad, but I was trying to taking them with a squirmy two year old on my lap.  That's not the easiest thing in the world to do!

At any rate, we went to Disney on Ice about a month ago and the kids LOVED it!  There were princesses to entertain Abby and enough pirates to have Caleb slashing an invisible Captain Hook for a few days afterwards.  It was fabulous!





The Wildebeests were pretty cool.  They reminded me a lot of The Lion King musical.   


I am proud of this picture.  :)



We had a great time!  Just look at these faces!






Saturday, March 16, 2013

Abbyisms

Abby's excited response to anything that makes her happy these days is, "Oh yeah, oh yeah, oh yeah!"

At Story Time last week, Anna was standing up in the middle of the story.  Amy had told her to sit, so Abby grabbed Anna's arm and pulled her down, saying, "Anna!  SIT DOWN!"

Caleb:  Momma, I'm hungry.
Me:  Ok, I'll get you a pretzel stick.
Abby:  Momma, I'm hungry!!!!!!!!!! (everything she says these days is more of an excited yell...)
Me:  Well, and what do you want?
Abby:  Ice cream!!!!!!!

(For the record, she got a pretzel stick too...although it took the fact that we didn't have any ice cream right now every ounce of parental restraint I had to say no, since we've worked so incredibly hard to get to this place!)



Friday, March 15, 2013

The Matriarch


My Grammie , my dad's mom, would have turned 106 years old on March 28th.  She was born in 1907 and didn't have electricity or running water until she was 12.  I heard quite a few stories about the outhouse!  

Grammie was admitted to the hospital last Sunday with a punctured and collapsed lung, so we knew her time was short.  She passed away on Wednesday, but even in her final hours, her stubborn German spirit shined through and she lived much longer than the doctors predicted!  Her stubbornness lives on in the younger generations, I think.  :)

While we will definitely miss our feisty matriarch, it's pretty amazing that she had such a long and full life.  It's even more wonderful knowing that she is now in heaven worshiping Jesus!  I also know that she was looking forward to seeing her husband again, whom she lost 20 years ago.  

We will miss you, Grammie!  You were a beautiful, feisty, amazing woman!



I Cannot Handle the Cuteness...


This girl gets very kissy whenever I blow dry her hair after a bath.  She loves to watch herself in our big bathroom mirror and smother me with kisses.  I'm glad I captured the moment!

Wednesday, March 13, 2013

Tuesday, March 12, 2013

A New Member of the Family?

We miss Becky.  It's been two years since she died, and I still miss her terribly.  I miss the way she used to nudge her head into my hands to be petted, or the way she rolled on her back with her paws in the air to get attention.  I miss how she used to take all of the covers when she slept on our bed.  I miss how she'd lie underneath Caleb's crib, guarding him.  I miss her hysterical potty dance, or the way that she "talked back" to us when we told her no.

I miss having a dog.

A few weeks ago, we began the application process for Adopt a Boxer Rescue.  It's a wonderful organization that my family has used multiple times, and my parents and sister both volunteer for them.  We have completed the paperwork and they have done the vet and character references.  A volunteer came on Monday to do a home visit and make sure that our house is safe for a dog.  Everything seemed to go well!  We're waiting on the official approval, but hope to hear soon. Then, they will begin searching for the perfect dog for us!  It takes a little longer when you have young kids because they often don't know if the dogs are good with young ones and won't place them in that type of home unless they are sure. 

I'm getting just a tad bit excited... :)  Actually, we all are!!!

So, in preparation for the newest member of our family, here is a list of rules...


This made me smile when I saw it.  There were more than a few times when I wished I had something like this posted in my house when we had Becky and non-dog-lovers came to visit!  :)



Monday, March 11, 2013

Loooooooong Way!

This is such a simple picture.


It's 3 kids enjoying a movie and popcorn on a Friday night.

Popcorn.

Abby ate popcorn!  A lot of it!!!

This girl has come a long way since last May when she was first given the okay to begin feeding therapy!!  I have to remind myself of that every now and then when I am wearing the food that was in her mouth, but she really has.  ;)


Sunday, March 10, 2013

So What?

So what if Abby drinks her Pediasure out of plastic shot glasses I found at the Walmart check-out aisle?!


She loves the bright colors and likes dictating which color she wants to drink from next.  The size is perfect for her because we've found that bigger cups with the same amount of milk in them overwhelm her.  I pour four "shots" at each meal and if she finishes all of it, it's about 3 ounces.  That's really good for Abby!!  Our feeding therapist LOVED the cups and thought they were perfect.  She's going to start suggesting them to other families!

So...I say, whatever works!!  

For the record, we have not yet actually done this out in public.  I fear what I might say to a "well-meaning" stranger who chastises us for encouraging under-aged drinking...



Saturday, March 9, 2013

Get Cozi!

I recently heard about the Cozi app from my sister.  It is an online family calendar that can be accessed by multiple family members who share the same password.   There is also a free app, so I figured I would try it out.  What did I have to lose?

Oh. My. Goodness.

I am in love!!!

The set-up process is really easy, and you just make it a password that everyone who accesses it will know.  For our family, only Matt and I are using it, but I can see where a family with busy teenagers would love for everyone to have access.

Once you have an account, you can start adding events to the schedule!  Each family member has their own color, or you can enter an event for the whole family.   You adjust the time, the place, and the day. You can also say if this is a repeating event (like Wednesday night youth group), and you can have it repeat weekly, daily, biweekly, monthly, etc.  You can also include a stop date for the repeating.  One feature that I haven't used, but think would be good for my husband, is the reminder feature you can activate for an individual event.  You can have it texted or emailed to you.

Because it's an app as well, I can access it any time on my phone.  No more forgetting the calendar when I need to make a follow-up doctor's appointment!  It's all on my phone!  I have included work, doctor's appointments, soccer practices, birthday parties, and every other obligation we have.  Matt doesn't have to call me anymore to ask about a certain day because he can access it right on his phone or computer as well.  It's good for our marriage. :)

The reason I haven't gone to an online calendar before now is that I really like having a calendar in print form.  Well guess what?!  I can print this calendar by month as an overview of events, by week with details, or by every few weeks with some detail.  LOVE it!  We now print the calendar out by month to keep on the refrigerator and by week to keep in my 31 organizer.  Then it's all in print form as well as having it online and on my phone.

I am getting absolutely no compensation for this post.  I'm just a busy mom who needed to get her multiple calendars all into one...and needed to get her husband organized too!  :)  It's pretty cool though...and free!!!  I love free!






Thursday, March 7, 2013

Medical Update

Abby had three appointments on Tuesday:  audiology, ENT, and feeding therapy.  It was a long day full of information...some good, some not so great.

Audiology was first.  Abby gets her hearing checked every six months because kids with Pierre Robin's Sequence (Abby's secondary diagnosis, since CCMS isn't studied) are at a much higher risk for hearing loss than other kids.  In fact, I just read an article that said that PRS kids have a 77% higher risk of developing significant hearing loss than other kids who have isolated cleft palate.  Some of this is fluid-related, which is usually fixed with tubes, but it can also be because of "interesting" anatomy.

If you've been reading this blog for long, you know that Abby has battled many ear infections.  The anatomy of her ears is especially "interesting" and small!  It makes it very hard for tubes to do their job.  Our ENT finally took the tube out for a few months and put it back in during her last bronchoscopy in September.  She hasn't had any ear infections or signs of drainage since, so we assumed it was working!

The hearing test did not go well.  Abby hearing has worsened in both ears.  The left one is borderline "normal," but the right ear shows definite hearing loss.  If you take a look at this chart, Abby's left ear was 25dB and the right was 40 db.  The audiologist did a tympanogram and was unable to get a good read on a vibration in her right ear.

I have noticed that Abby doesn't respond as consistently when she is not facing me, but it's hard to tell if it's a hearing issue or typical two-year-old-stubbornness!  I just thought she was ignoring me!

When we saw the ENT, his first response was that he was sure she had fluid in her ears.  He took her to the torture procedure room and used multiple instruments to look at her right ear drum.  There was no fluid or wax build-up, but the tube was gone.  I have no idea when it fell out, but it's not there now.  He was able to see a slight vibration in her right ear, so that made me feel a little better.

Our ENT decided not to put a tube in right now because he doesn't think it's worth the anesthesia risks.  He wants to retest her in August.

There are a few factors here that complicate things:

1.  Any time Abby is put under anesthesia, she has to be intubated fiber-optically by a specially-trained anesthesiologist.  There aren't many!  The benefits have to outweigh the risks whenever anesthesia is concerned.

2.  The audiologist was as unfriendly as she could possibly be.  She made no attempt to get to know Abby or explain what she was doing in kid terms to make her feel more comfortable.  Although I couldn't hear anything of what she was saying to Abby, Abby's response leads me to believe that she was having her touch the same 5 or 6 body parts over and over again for 5-7 minutes.  So, who knows if Abby couldn't hear her or was just bored?!

3.  During this time in her speech development, Abby depends on hearing in order to make the speech sounds.

I trust my ENT very much, but I'm concerned from a speech standpoint that waiting could be detrimental to her development.  I decided to talk to my friend Patricia, who is an audiologist at another hospital.  She said my concerns are valid, but that it could have also just been a bad testing situation.  She offered to retest her.  Given that Abby knows Patricia and I know that Patricia would try her best to engage her, I think this is probably the best solution.

I am so grateful that Patricia was willing to this!  I trust her as an audiologist and feel like we'll have a much clearer picture one way or another after this test.  If the test comes back better than the first, we'll know that the first audiologist was terrible Abby just tested poorly the first time.  If the test comes back the same or worse, then I will take the report to our ENT and begin the process of moving forward.  That may or may not mean putting a tube back in, since there wasn't any fluid present.  We may be looking at alternatives to increase her hearing...good thing American Girl sells hearing aids for their dolls now!  :)

To end things on a better note, Abby's feeding therapy went well and our therapist was very impressed with how well she is drinking her Pediasure.  We now have her drinking 8 oz a day and are now starting to also use what was meant for the tube feeds...which means decreasing feeds!!  This is very exciting, as we haven't decreased her feeds since July.  Also, for the first time ever, Abby has been consistently doing consecutive sips!!  Until now, it's been one tiny sip at a time, which means that she gets tired of it very quickly.  She's made fantastic progress with that in the last week.

So....just another turn in the journey!  :) Thanks for continuing to walk with us!


Wednesday, March 6, 2013

Abbyism

Abby has been at the library a lot recently!  We're trying to help her to feel more comfortable communicating in social situations, so Matt takes her to the Monday Morning Movie (which is really more story time than movie, which I like!) and I take her to Story Time on Thursdays.  She is also usually there one evening a week while I tutor.

Needless to say, she recognizes the library when we drive up!  As I parked the car, she announces, "I'm HEEEEEEE-ERRRRRRE!"

Then she went right up to our favorite children's librarian and told her plain as day, "I'm wearing Pull-Ups!"

Not exactly the greeting I was going for, but when you have a kid that won't talk to other people, you take what you can get!

Tuesday, March 5, 2013

Great Interview

This is my friend Rachel and her family.  Her son Ryan has Pitt-Hopkins Syndrome, which means he's another rare kiddo.  I hope you'll take a minute to watch the interview they did with Fox 5 and get to know this wonderful family a little bit.  They are amazing!

DC Breaking Local News Weather Sports FOX 5 WTTG

Sunday, March 3, 2013

My Daughter is One in a Billion...Literally!



So, I never quite managed to blog about Rare Disease Day in the days leading up to it.  Last year, we made t-shirts, encouraged everyone to wear blue, and spread the word.  I even asked people to send me pictures of them in their blue and did a photo collage of it on the blog!  This year...I just never quite got around to it.  I have been just super busy all around with two awesome kids, so I think that's a good enough reason.

I did share a few Rare Disease Day pictures on Facebook and write a post about raising awareness for those living with rare diseases.  That should count for something, right?

And my dear Abby celebrated Rare Disease Day in her own way, with her own color scheme.  She decided that princess tutus just SCREAM awareness.  They scream something...





Saturday, March 2, 2013

Happy Birthday, Dr. Seuss!


Today is the great, late Dr. Seuss' birthday.  I think he would have been 108 or something like that.

Abby celebrated by making an adorable craft at Story Time this week.  LOVE it!  

And just because my favorite boy is a Star Wars nut, here's Dr. Seuss' take on the Force and other Star Wars topics...




Friday, March 1, 2013

What a Busy Week!!!!

I'm so sorry for the lack of posting this week.   It's been a hectic week and I just haven't had time! Here's a quick run-down of excuses:

Monday:  I worked all day, then dealt with whiny children all night.
Tuesday:  I worked all day and tutored all evening, not even setting foot in my house until almost 8 pm!
Wednesday:  I did all sorts of things around the house, played with Abby, watched Anna, and went on an ambitious shopping trip with both children in the evening.  I regretted it.
Thursday:  I took Abby to Story Time, worked around the house a ton, dealt with supply orders, and went curtain shopping...no luck again.
Friday:  That's today.  I worked all day (talk about an insane day at work!!!), fixed a quick dinner, then took the kids + Sara to an event at the library.  They did lots of winter crafts, ate pizza, and made their own ice cream.  They were in heaven!

This is one of those weeks when I feel like Matt and I are just passing ships on the sea.

And here I am...blogging about not having time to blog.

I'll catch up.  Promise.