Life as a Leach

We got some amazing news yesterday. Abby saw her thoracic specialist, who said that her ribs are continuing to calcify and that he doesn't feel like any surgery at all is necessary! He doesn't need to see her again until she is 4 or 5, and he doesn't feel that we need to put any limitations on her activities...she could even play soccer if she wanted to! (I think we'd better work on the standing fi rst though!) :) To give you an idea of how much of a miracle this news is, below is the very first image we have of Abby's ribs.  This was taken about an hour after birth.  Here is another image that was taken about a few weeks later, but is a little better picture of her ribs. When we asked the nurse practitioner what the gaps meant for Abby's prognosis, and she gave us a helpless look and said she'd never seen anything like this.  She hung a "Fragile!  Do Not Touch!" sign over Abby's crib and everyone handled her with kid gloves.  ...

Abby wasn't really thrilled about putting the clown nose on her nose...  ...so we put it on her other nose!   (The filter on the trach acts as a nose because it filters out the bad stuff and provides moisture to the airway.) Don't worry, she could still breathe.  Although it appears that she was just hanging out wearing the clown nose for the show, in actuality, it was on for maybe 3 seconds.  :)

Next to the guy engulfed in flames getting shot from a crossbow, meeting the elephant, Asia, was the highlight of the circus for Caleb.  He literally had a front row seat for this part during the pre-show activities, and it was so cool!! Asia got her nails brushed and polished before the show. She showed everybody her trunk and her costume. Then she got right to work painting.  Yep, painting!!  She chose the colors and dipped the paint brush in the paint and everything! This was her first masterpiece.  You enter your name in for a drawing and they give away her art work at each show.  Caleb was pretty disappointed that he didn't win.  Honestly, I think we have a couple of similar "masterpieces" hanging up on our fridge... She started in on her second masterpiece.... ...and was so proud of this one that she showed it off herself! The trainer gave her an entire loaf of bread at one time as her treat.  Sh...

Abby sucked on Baby Jonah's head like a pacifier and soothed herself right to sleep.  She does it allllll of the time! I'll admit that this might make my kid a weirdo, but I kind of love that she willingly puts things in her mouth now.  For a long time, that just never happened. So, you just keep right on suckin' on Baby Jonah's head, Abs!

To me, the coolest part of the entire circus was getting to go onto the floor for the pre-show.  We were literally feet away from this woman practicing her routine up in the air!! Then we were equally close to this girl holding onto this with a little loop around her foot...crazy! Caleb enjoyed the clown routines. This juggling act was fun to watch.  One of the girls asked Caleb if he wanted to try, but he wouldn't.  He'll be sorry he said no one day when he gets older and realizes what a cool opportunity it was!   We also were very close to the elephant performing, but that deserves a post of its own!!!!  (It was Caleb's second-favorite part, after the cross-bow.)

In my old life, I used to make Scrabble tile pendants to sell at craft shows.  These are real Scrabble tiles with some sort of design attached to the blank side with a bail (pendant hanger thingy) attached. Well, life is much too exciting  these days to have time for craft shows, and my inventory has been sitting in their little storage boxes in our bedroom for the last year and a half or so. Sooooooo, in an effort to raise some more money for RMH, I have decided to attempt to sell some of the pendants I have in my inventory.  Because of lack of time, I am sorry to say that I cannot do any special orders.  But I have a whole bunch of pendants in my inventory as it is, so there is bound to be something you would like!  You can click on this link to view examples of pendants I have made in the past.  Keep in mind that this is only for the pendants, and what you see on the website may not be one I have in my inventory.  If you see something you like...

If you have tulips popping up at your house or have your camera when you're out and about, take a picture or two and send them my way!  I would love to do a Welcome to Holland post with lots of Holland Sightings.  Or, if you think it's dumb, just ignore this post.  :)

After posting about the Abby Joy buttons yesterday, two people have asked how they can get one themselves!  I hadn't even thought about it because we originally just made them for the team, but just in case anyone else is wondering...make a donation to The Ronald Mcdonald House and I will get one to you!  You can either give me the donation directly or click here to donate to our team page.  I will be going to Baltimore three times before the race and will be able to drop it off at the House. If you're not local and want one, I will mail it to ya!  :) Please...no pressure!!  I was hesitant to even put it out there because I don't want people to think I'm all like oh, buy a button of my little girl and wear it around!   But since people were asking about them, I figured I'd offer it to everybody.  :)

Last Thursday, we had the opportunity to go to the circus with an organization called The Starlight Foundation  that provides fun activities for families facing complex medical problems.  We have been with them for almost a year now, but this was our first activity with them.  It seemed like our schedule just never allowed for us to go to any of the events, so we were really excited when we realized that we would be able to go to the circus! Over 100 people from Starlight were there, and we took up two entire sections.  It was refreshing to be among others who have a clue what you're going through, and I have to admit that it was also nice not to have to deal with the constant stares for a few hours. The ushers assigned to our sections were so sweet and accommodating.  We brought our mega-stroller in loaded down with all of the medical equipment (we were parked in a parking garage much too far away to get equipment in an emergency) and stored it on the landi...

Welcome to Holland!  I'm lovin' my beautiful tulips popping up all over my yard!

My sister and I have been hard at work making buttons for The Joy Runners to wear while they are participating in the 5K to benefit the Ronald McDonald House!   My sister is a much better designer than I am, so she did the design and I made them into buttons.  I think they turned out pretty cute! If you have been planning to join The Joy Runners and haven't registered yet, you need to do it as soon as possible.  According to RMH's Facebook page, they are nearing the maximum number of participants and will be closing registration soon--possibly today.   If you can't join our team but would like to make a donation , we would greatly appreciate it!!  All contributions go directly to helping families at the Ronald McDonald House in Baltimore, not to pay for corporate overhead costs!  The walk is less than a month away, and we want to be able to raise as much money for our favorite charity as possible.  The House means so much to us and we ar...

Abby and Caleb had a good time the other day playing in their teepee!   Of course, Caleb put the play tunnel up to the opening and crawled through the tunnel to get to the teepee, and then he started pretending to be a bad guy sneaking up to attack Abby in the teepee, and then somehow it became Star Wars themed...boys!!  :)

Caleb got changed into his pajamas, and this is what he put on... Oops, I think Abby's pajamas ended up in his drawer!   (What's most hysterical is that, except for the length, the pajamas fit my skinny boy just fine!)

Have you heard about the Hello Kitty craze at our house?!?  :) Here's Abby wearing a cute little nightgown her Grammy got her.  When I put it on her, she looked down and started pointing to Hello Kitty and smiling.  Then she got a glimpse of herself in the mirror and got really excited when she saw it!  It's not the best picture here, but it shows her nightgown at least! You can hear Abby "say" Hello Kitty in the video.  She does it a couple of different times.  Gotta love her face in the beginning of the video too!

We're a little behind, but we finally planted a tree in honor of Abby's dedication.  Hey, it was within the year...that's not so bad, right?   We went to our favorite local market/nursery because they were having a sale and I would much rather have my money going toward an awesome organic nursery and farm than Lowes.  After much hunting for the perfect tree for Abby, we settled on a Magnolia hybrid appropriately called The Little Girl.   It will grow to be only about 6 feet tall, which I think is perfect considering that Abby is destined to be little. I love the beautiful purple blooms! We had an old holly tree that we needed to get rid of, so we got some help from a boy in the youth group with a much greener thumb than either of us!  After the tree was cut down, he started in on planting Abby's tree.   Abby already points to her tree whenever we go outside.  If she's anything like Caleb, she will take a strong liking to h...

Abby has so much personality!  Here are a few glimpses into life with my funny, sweet, sassy, stubborn Abby Joy! *  During speech therapy, her therapist was trying to get Abby to touch something on her iPad.  She grabbed Abby's hand and Abby not only pulled it away, but crossed her arms in a defiant don't touch me move.  *  When I took away something she wasn't supposed to be playing with, Abby started flapping and howling. She threw herself flat onto the floor face-down and smacked her head on the corner of her iPad's (very hard) protective case.  That'll teach ya to throw tantrums... *  We went to Walmart last night to  let Abby pick our her own big girl toothbrush.  As we went through the little girl's clothing area, Hello Kitty was everywhere!!  Every single time she saw The Kitty, she would smile really big, "say" (hum the syllables) Hello Kitty, and clap.  It is so darn cute!  Guess what kind of tooth brush she pic...

My favorite sister brought me some beautiful tulips the other day.  I put them on top of a little cabinet so that they could be seen right when you walk in the front door....just under our JOY sign.   I like to think these tulips greet everybody with a cheerful Welcome to Holland!

We've had a lot going on in the medical department, but I just haven't had a chance to blog about it. Here ya go! Ears:  Poor Abby had another ear infection about two weeks ago, (this is #6 post-tubes, if you're counting) and the ENT now has her doing some heavy duty ear drops for the next 2 months to try to kill whatever it is that is in there.  6 infections in 6 months seemed like a lot to us, and ENT agreed.  They're hoping that these drops will take care of it once and for all.  I've also learned that cleft palate ear canals are shaped differently than those without a cleft, so the tubes don't always fit the right way when they are little.  Apparently, the ear canals fix themselves over time, but it's not uncommon for cleft palate kids to have more ear infections with the tubes.  Who knew? Trach:  Abby had what appears to be a skin infection at the trach site, so she has been on a cream for that. It created a dimple near her trach site, which ...

Our main night nurse commented a few weeks ago that Abby is one of the happiest wakers she has ever seen.  It's true!  The girl throws opens her eyes, bolts up to a sitting position, and starts clapping, smiling, and giggling.  Our nurse said it's like she's just happy to be alive and thankful that God gave her another day. I have to admit that my wake-up is not quite so...peppy.  My alarm goes off, I groan, and hit snooze 2 or 3 times before I finally resignedly force myself to get out of bed.  I'm not sure I've ever clapped and giggled upon waking. You may not be much of a morning person either, but I think we could all learn something from Abby!  I can honestly say that I don't often wake up thanking God for another day.  Since our nurse brought Abby's "Morning Gratitude" to my attention, I've been trying to do that more. So while you may not clap and giggle when your alarm goes off, join Abby and me in thanking God that He has allowed...

Over the past 8 months or so, I have the pleasure of knowing Brooke Shockley , a beautiful teenager with Osteosarcoma . I met Brooke at the Ronald McDonald House and she is one of the most mature, positive teenagers I have ever known.  She truly does choose joy, even though she is going through more than her share of trials right now.  To know her is to love her, and boy does everyone at RMH love her!!  I can't wait to see her again at the 5k next month. A few months ago, an organization called Music Is Medicine  (run by two incredible teenagers, I might add!!) arranged for Drew Seeley to write a song just for Brooke.  He actually came and performed it at JHH for Brooke and some of the other patients there, and the song just came out on iTunes.  All proceeds go to Pediatric Cancer Research at JHH, and it's all because of Brave, Beautiful Brooke! You can hear the song and "get to know" Brooke a little through the video below.  But I'd encourage...

When people ask how many signs Abby has, I usually say about 20.   Truth be known, I'd never counted them all up.  The other day at the JHH specialties clinic, I ran into an amazing 13 year old I know who is staying at the Ronald McDonald House.  He'd never met Abby, so he was asking some questions about her. Side note:  I LOVE the innocence of kids:  "What's that thing on her neck?"  "So, does it just go around her neck, or does it go inside of her?"  "Is she going to get better?"  I wish adults would just come out and ask those questions, rather than staring!  I eagerly answered all of his questions in kid-friendly terms loudly enough for the gawkers nearby to hear. The boy saw Abby sign "more" to me and asked how many signs she had.   About 20,  I replied.  Then he asked what signs she knew. Hmmmm.  Her nurse and I started listing some...and we realized that she had a lot more than 20!! Over the past three days,...

Caleb prays before each meal. If you've never experienced a Caleb Prayer, it goes a little somethin' like this:  "God is great and please help Mommy and Abby feel better.  Amen."  He's been praying that since I went into the hospital with Abs in September 2010.  I'm never going to get sick again! Recently, we've starting having Abby pray after Caleb.  We want to include her and Caleb started to work on praying about this age, so we figured, why not? We started out modeling the signs for "Thank you Jesus.  Amen." because we figured stringing those three signs together would be plenty for Abby right now.  After a day or two, she started mimicking us.  Then I started just saying the word and she would sign it.  Now, I start her with thank you  and she does the rest.  She knows that as soon as Caleb prays, it's her turn! The best part is the huge grin that spreads across her face when it's time for her to pray.  Her favorite ...

I read this article the other day after it was reposted by Moms of Miracles, a group I belong to.  I found myself nodding and uh-huh-ing a lot, so I shared it on Facebook.  Several people commented on it, and a few others shared it themselves, so I figured it might be blog-worthy. In addition to sharing the article, I wrote a few of my own comments.  They are in red so as not to confuse anyone! ---- About 6 million kids in America  receive special education , according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness. My 3 year-old son Jacob is one of them. He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 4...

My dear, sweet Abby has gotten into the habit of cupping my chin in both of her hands very gently and giving me a cute little smile to say "good night" before I put her in her crib. Melt. My. Heart.

 Just testing out an email feature!  Talk amongst yourselves! Julie Leach

...Abby will be getting her iPad (for communication) tomorrow!  It will be a while before she is actually using it, but we will begin modeling "speech" for her right from the start.  I'm excited for this next phase and think it will be a great way for her to communicate with other kids on her own without having to rely on one of us to interpret the signs she does.  Yippee!!!  :) **Be on the lookout for videos of Abby using her iPad!

I'm a wear-your-shoes-until-they-fall-apart kind of a girl.  My sister, the shoe queen, hates that about me.  She also feels like I take the comfort over style idea to the extreme and has banned me from buying anymore Crocs or Sketchers for work.  :)  So when my trusty Crocs finally died on Monday morning when I put them on to go to work, I put on my brown loafers only to find that walking in the snow we had that day wasn't so wonderful because the holes in the soles caused my socks to be soaked!  Since both of my go-to shoes were now in shoe heaven,  I caved and decided it was time for some new ones.  I think my sister cheered. So we all drove the hour and 15 minutes to the "big mall" (yes, we live that far away from one!) and I actually found two very cute pairs in one store.  They would have been Amy-approved, too!  :)  Despite the fact that they weren't cheap, Matt convinced me that it would be worth it since I wear them out anyway...

Wednesday was Spread the Word to End the Word ...as in the R-word I hate so much.  I didn't blog about it on Wednesday, but I did share a few links on Facebook and have definitely blogged about it in the past. Honestly, I don't care if you go and sign the petition...just don't say the word.  It is offensive, even if you don't mean it that way.   Why use the word at all? Love That Max's Ellen did an awesome video about her son Max I wanted to share with you.  I hope you love it...but more importantly, I hope it helps you see that there is a child behind the name. Spread the word to end the word!

Anybody know that song?  It's an old camp song that I learned as a kid.  And it's what Abby has been doing a lot of recently! The other day I decided to be an extra nice momma and give Caleb a juice box--we are water and milk people, but I had a few left over from his birthday.  Abby seemed interested in it, so I figured, why not?  I'll try it! I squeezed it in the first few times so that she could get the taste, but then once she decided she wanted it, I made her suck it through the straw herself.  She got a little angry at first, but she quickly learned! Once she mastered that, I tried several different water bottles.  She really liked the Thermos bottle, which was much like this Hello Kitty one:   Except that it was Toy Story, not Hello Kitty.  Caleb wouldn't dare let her use his Star Wars one.  That's sacred, apparently.  I need to get this girl her own Hello Kitty water bottle!   Side Note:  We have a lot of wa...