Life as a Leach

We got the disc in the mail from our photo session!  If you missed my first post about it, Tara is a friend of ours from waaaaaaay back.  She was actually a camper when we were counselors at the camp where we worked, which makes me feel very old. Now she's all grown up, and a fantastic photographer!  Check out a few of my favorites, and be on the lookout for a few more posts over the next couple of days.  :) If you're local-ish and interested in having Tara photograph your family (or wedding!), click on the link above to visit her website.  She's really nice and fun--promise! Family Photo Abby loves kisses from her momma! Caleb and Daddy I hope this makes you smile :)

Very quick update, because I'm behind on my work for school and need to catch up a little!  Abby will be having surgery tomorrow @ 1:30 to check out her airway, get rid of any scar or granulation tissue, and try to figure out what's wrong with her ears.  It will be between 90 minutes and two hours.  We'd appreciate you remembering Abs tomorrow! In other, but related, news...Abby got sick tonight immediately after her 4:00 feed.  She seemed otherwise fine before and after, so I'm hoping that she just ate too much.  I didn't give her any solids for dinner, but she's tolerating her overnight feeds fine so far.  I'm hoping it was just a one-time thing....and that it doesn't affect her surgery tomorrow!  I tried to call, but the ENT office was closed.  I'll call tomorrow morning to ask, just in case.  I really don't want to go all the way up there just for them to say they can't do it.  Pray for that too, please!!

Here is where I bore you with all of my Proud Momma pictures of Caleb's preschool graduation.  Love it or hate it.  Either way, I'm sharing them!   After a pot luck dinner, everybody watched a slide show.  I took pictures of a few of the photos of Caleb. Why am I not surprised that there are so many pictures of him building with Legos? This is hard to see, but they are inside of this huge "space bubble" made out of trash bags and blown up with a big fan.  He's dressed in astronaut gear, complete with soda bottle oxygen tanks! The kids were taught to line up to receive their diploma with their right arm out and their left arm behind their back.  It was hysterical to watch them!  Note the progression of the kids here in these next few... Yeah, not a single kid is doing what he/she is supposed to be doing now! My graduate...sigh! His arms went back into position for the handshakes!  rece...

I give a lot of gifts to teachers, therapists, and our nurses.  I believe in the power of a thank you note and a little thinking of you  every now and then.  As a teacher, I know how much it means to me when someone remembers the job I do.  Teachers (and therapists and nurses!) work super hard for not a lot of money, so I think it's important to say thank you ...and often!!!! Thank you, Ms. Nancy and Ms. Karen!! Thank you, Ms. Katie and Ms. Amy!!  For an end of the year gift for Caleb's teachers, I made each teacher a set of clothes pins magnets.   I originally heard the idea when we made them at MOPS, but I decided to keep the ones I made!  :)   Most of these were made with craft supplies I already had.  I did buy some ribbon so that they looked more like a set.   The cool thing with these is that Caleb was able to help with them.  He picked out the ribbon color and the flowers for each one, although I d...

Here's a running list of Abby's growing vocabulary!  The words with the stars are ones she uses in conversation.  (I love that I can really have a conversation with her now!!)  The others are words that she can repeat pretty well, but hasn't started to own  yet. Momma * Daddy * Bubba * (This is what she calls Caleb, for now) ball * no * (This sometimes comes out as "Nein," which is German for "no."  She's bilingual!) :) cat * up bye-bye * book flower * (This one surprised me!  We were walking up the steps when she stopped and pointed to a flower arrangement on the cabinet below, and said "flower!" I had no idea she knew that word, but now she points to the arrangement and says it every time we walk upstairs!) bubbles * hi * Nina * (what my mom goes by) Paw Paw * (what my dad goes by) Owen * Abby * okay night-night * pat kitty * (as in Hello Kitty!) hello pop (I haven't been able to figure out if she owns this or n...

Caleb's very first day of preschool:  September 2010 Caleb's very last day of preschool:  May 2011 Same hair cut, same striped shirts, same backpack, but a very different kid!!   Goodbye preschool, hello kindergarten!

Remember yesterday how I said I've been insanely busy?  Case in point.  I started this post on the DAY of her swallow study, and am just now finishing it.  I had to change some of the wording because I'd intended to post it the day of her study.  At least I have a lot more to write now! ---- Abby had a swallow study done last Monday to see if she aspirated (inhaled in her lungs) food when she ate.  We haven't been able to do a study up until now because she didn't eat enough to be able to do the study.  After months of work, she was finally ready!! A swallow study is basically an xray while she is eating.  She sat in a high chair sandwiched between two parts of the xray machine.  I fed her barium mixed with baby food, and she drank some barium mixed with yogurt and a Kool-aid packet.  The trick is to keep her still and looking right at me during the study so that they can get good pictures, which is no easy task with an 18 month old! ...

Next Thursday, the 31st, Abby will be having a bronchoscopy.  This is where the ENT takes a look down her airway to see how it's growing and look for any scar tissue, granulation, etc.  We're hoping for good results. In other, but related, news, Abby had another ear infection last week.  Ugh.  This is #8 since tubes, if you're counting.  Thankfully, we were already going to ENT the very next day after her ears started bleeding, and he confirmed the double infection.  NOTE:  this is after TWO MONTHS of heavy-duty ear drops, that we had just finished 4 days before.  The ENT swore that these ear drops would kill everything once and for all.  Hmmm... So, back on Ciprodex is Abby.  She is so tired of ear drops.  These drops will carry us until the bronchoscopy, where the ENT will also be taking a look in her ears.  He suspects that the tubes are misplaced or that there is granulation around them.  Unless the tubes look abso...

I have SO much to blog about.  Life has taken over, and I just haven't had any time.  It seems like every aspect of my life is VERY busy...work, family, medical, education, etc.  Woooooooo!  Summer is so close I can almost taste it, and then life will slow down and I'll float in the pool with my laptop and blog the day away.  Riiiiiiiiight... Stay with me.  I've got lots to share, with very little time to share it!  I promise, I will though!!!

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.   The whole night centered around this robot named Rock-o-Matic, or "Rocko."   This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers  Caleb did his share of singing and dancing too.  He knows m...

Here's little sampling of some of Abby's words.  Keep in mind that she is 19 months old and I  am an extremely amateur videographer, so the video is less than stellar.

Abby and Caleb were gettin' down at the Imagination Movers concert!!

On May 11th, Caleb was given a great surprise as a preschool graduation present:  tickets to an  Imagination Movers  Concert!  Matt picked him up early from Mom's Morning Out, saying we had to take Abby to the doctor.  We listened and sang along to the IM CD the whole ride to Baltimore. When we got out of the car, there were two little boys wearing Imagination Movers jumpsuits.  Caleb pointed them out, but didn't think anything of it.  We went into the theatre (which looks  nothing  like the doctor's office!), looked around at the long line of kids wearing IM shirts, and he never caught on!!  See his shocked response below! I have lots more pictures and videos to share about our Imagination Movers adventure!

In honor of Tracheostomy Awareness Week , I have written a little list of some "givens" if you're a trach mom.  Enjoy! You might be a trach mom if... *  You have ever looked into a trach tube to check for a plug and got secretions shot at you. *  You can change trach ties while talking on the phone, holding the trach in with one hand, entertaining your trach child, and disciplining your other child all at the same time. *  Your child and family have ever been stared at, pointed out, gaped at, or flat out laughed at...and are stronger for it. *  You take your child to OT, PT, and Speech every week...and are the OT, PT, and Speech teacher the rest of the week! *  You require everyone who walks into your house to wash their hands before touching your child. *  You have ever been asked to leave a public place because the suctioning is too noisy or is disturbing other patrons. *  Your supply company knows who you are by your voice. ...

I haven't had a chance to post anything about Tracheostomy Week yet, but here is a video that was created for it.  I LOVE it! Just remember, kids with trachs want friends, want to laugh, want to feel success, and most importantly--want to be loved.  It's just a different way to breathe, people!  It's not that big of a deal!  :) Global Tracheostomy Tube Awareness Week 2012 More PowerPoint presentations from Anita Birk

Nope, no one can ever use boring  to describe my life! Here I am, tonight, watching Anna for a little while.  Everything is going so smoothly and the girls were playing really well in the playroom.  I take them upstairs for bath time, get Anna undressed and into the tub, then turn to take Abby's clothes off.  I notice her shirt is wet, but didn't think anything of it...until I put her in the tub and thought, something is missing! Her g-tube was out, and I had no idea how long. Now, the g-tube coming out isn't life-threatening like the trach coming out, but the hole does close up very quickly.  You don't have a lot of time to get the tube back in, and I had no idea how long it had been out.  It could have been up to 2 hours, since I disconnected her last feed. I turned the water off, called Caleb to stay with Anna in the bathtub (there was no water in the tub, so she was just playing with the toys!), and ran downstairs with Abby.  Since I had no...

Update 5/16/12:  It was brought to  my attention that I forgot to link the article!  Sorry!  You can read the article at the link below. I read this article the other day, and it was SUCH a good reminder for me!! I'm not one to be on my phone very much out in public.  I might send a quick text if it's really important, but I'm not surfing the internet or anything.  I don't play online games and hate phones at the dinner table.  I have to admit that I felt pretty good when I first started reading the article! Then I got to the part about checking your email and getting mad when your child interrupts you. Or when she mentions using car time to make phone calls instead of talking to your child.  (I have Blue Tooth through my car, so it makes it very convenient to get phone calls out of the way.) Spanked. While I absolutely must have a phone with me in case something happens with Abby, I am really going to work on using other electronics ...

For Mother's Day, I was given the ultimate gift--the chance to go to bed early (and not have to wait up for the nurses) for a WHOLE WEEK!  Woo hoooooooo!  I also have the next FIVE Saturdays to sleep in....oh, yeah, and I get to go see Jekyll and Hyde when it comes here in November....but sleep is what is currently on my mind!  :) Since I try not to blog when the kids are awake and I won't be staying up late waiting for the nurse, you might not hear too much from me this week.  Never fear, I will be back...with tales of our Imagination Movers concert, an account of all of Abby's spoken words, and a few other fun things.  Stay tuned!!

Caleb had "Beach Day" on Tuesday for school.  We all headed to a local beach for some shark teeth hunting, sand castle building, and freezing cold water splashing!  Although it wasn't all that warm, I dressed Caleb in swim trunks and a swim shirt because I knew he'd get soaked. I was right! I didn't take too many pictures because I was too busy playing with my boy, but I did snap a few when two horseshoe crabs washed up on the shore. Yep, there are two...connected... The kids thought it was the coolest (and grossest) thing in the world.  They didn't even realize there were two. There were also three copperheads right near the little footbridge.  Someone called animal control, who proceeded to prod the snakes and make them mad.  Smooth. When we were leaving, the "professionals" were watching the snakes.  I asked what they were going to do with them, and they said they didn't know, but they didn't want to kill them.  I a...

I'll admit it.  I have developed a Pinterest problem.  As much as I try not to get sucked in, the wonderfully crafty ideas are just too much for me to handle! So I went right to Pinterest to look for some gifts for Teacher Appreciation Day.  We have a lot of teachers these days:  Caleb's 4 teachers, Abby's 3 therapists, and her 3 nurses.  They're all teachers in their own way, and we like to say thank you with little gifts every now and then. For Caleb's teachers and Abby's therapists, I made Emergency Chocolate pull-tab cans based on this post.   I found this quite some time ago and have been saving the tin cans that Caleb's mandarin oranges come in ever since!  The pull-tab stays in tact because you open the can of oranges from the bottom using a can opener!  Cool, huh? I typed up a little narrative explaining when the chocolate was to be used...in case of emergency only!  Abby's and Caleb's are slightly different. "The cont...

Ready for another Pinterest-inspired activity?   Think Sunday School felt boards from your childhood.  So fun!  I have had my eye on this one for a while and made it just as soon as I bought some felt at Walmart! I got one package of felt and let Caleb choose two colors to be used as backgrounds. I glued the two pieces back to back and let it dry for a few minutes. Then I simply began cutting pieces of felt into various shapes.  I chose to use plain, organic shapes like rectangles, squares, circles, and triangles.  The original tutorial used craft scissors, which turned out really cute too.   I cut a small hole in the background, threaded a ribbon through the hole, and tied a few knots so that the ribbon would stay secure.   Caleb has absolutely loved this!  This is a tree, the moon, and some sticks.  Since  this picture was taken, he has become much more creative and prides himself in using every sin...

Caleb and Abby love dancing to "All the Single Ladies!"   The girl learned to climb up on chairs to dance pretty quickly, and the boy is a dancing machine!  

We had a family photo session done on Sunday with our old friend Tara.   ( She's not old, just our friendship!)  She did a fabulous job, despite the less-than-cooperative little boy.  She was extremely patient, and even rolled with it when Abby and Caleb were both crying at one point!  She assures me that she got some good ones though.  :) Seriously, we were really impressed with Tara.  I can't wait to see the pictures!  I know I'm going to love them! In the meantime, go visit Tara at her photography blog.  Ooh and ahh over her awesome photos and leave her some nice comments. :)

I've hesitated to post this, because it was an intensely personal and sensitive conversation.  But I hope that by sharing this, people will recognize that siblings need love and reassurance too.  Sometimes, the special needs child needs  so much attention that the brothers and sisters get pushed to the side. The other night when I was putting Abby to bed, Caleb brought in his Minnie Mouse to give to Abby.  (No, I have no idea why he has a Minnie  Mouse.  I'm pretty sure he got it out of my treasure box at school a few years ago, but for whatever reason, he loves it!)  This was very generous because he has been reluctant to let Abby play with it before...which, of course, meant that she wanted it even more and would often sneak into his room to snatch it! So I was surprised when he told me that she could have it.  When I asked how long, he told me that Abby could have it until she died. Not wanting to make a big deal of what he said, I joked ...

Remember this article that I posted a month or so ago?  It talked about some important things to know about a special needs parent.  This article was so well-received that the author has written a sequel, of sorts, explaining how people can help a special needs parent.  I have written some of my own comments to each item in the list.  These comments are in red so as not to confuse anyone!  :) ----------- When I set out to write  7 Things You Don't Know About a Special Needs Parent , I was a little nervous. I thought to myself,  Who am I to speak for all special needs parents?  My situation felt unique, and maybe no one would relate to what I was going through. I was encouraged by  this post , though, and thought I would at the very least write it for myself, and share it with my friends, since these were hard things for me to talk about. I have been completely overwhelmed with the response to this article -- huge numbers of Faceboo...