Life as a Leach

Abby got her glasses!!! Right now, she's not thrilled with them.  Don't let the picture fool you!  I think that they make her a little dizzy and unsteady.  I can understand, because that's how I feel whenever I get a new prescription.  Unfortunately, she won't keep them on for more than 10 minutes at a time, and that is only with bribes!   Just like everything else, we're going to keep working on it and try to increase the stretches of time over the next few days.  Today I mostly focused on getting her to realize that she can't throw them if she wants them off!  She has started handing them to me, at least!   Our ultimate goal is for Abby to wear her glasses 80% of the time, but her doctor said he would be happy with 50% of the time in the beginning.  I think we hit about 8% today.  :)

...lazy Saturday mornings watching cartoons. Love those kids!!

She loves school!

Caleb came downstairs Sunday  morning to see that I had removed the changing table from the playroom. C:  I see that something is missing! Me:  Yes, it is!  What? C:  The changing table.  Why did you take that out? Me:  Well, I figured I could just change Abby on the floor and we could use the extra space. C:  (smiling this weird smile) Oh, that is very nice. Me:  Ok...thanks... C:  I smiled and said that very politely, didn't I?  But on the inside I was thinking, there is going to be poop ALLLLLL over the floor! ------ C:  When I grow up, I want to be a dancer. Me:  Oh, I thought you wanted to be an astronaut. C:  Well, I am.  I'm going to be an astronaut who is also a speech therapist for the other astronauts who need some help talking.  I can also use sign language for the ones who can't hear.  Then I'll just be a dancer on the weekends. Me:  I see...what kind of dancer? ...

We're looking at possibly moving all of Abby's gtube feedings to overnight.  This will be good for a couple of reasons: 1) It frees her up during the day.  Now that she's in Mom's Morning Out and story time at the library each week, I'm noticing that gtube feeds are getting in the way of her activities a little more.  With the new-found freedom of no nursing, I want Abby to be free to go places and have play dates without having to deal with feeding schedules. 2) She will hopefully eat more by mouth because her belly won't be getting full at 12 and 4!  We're really,  really  trying to increase the volume of food she is taking.  This is a very slow process, but we have noticed an improvement with the Pediasure.  Abby is typically taking 3 ounces of pureed food and 1 ounce of Pediasure at each meal.  (She eats 3 meals a day and one or two snacks)  She's still not chewing  anything.   Texture is just not tolerated at all--not...

I will miss our nurses.  They all love Abby and have become part of our lives.  I'm sure we will keep in touch with them.  I'm glad we have nurses that we will actually miss, because there was a time when nothing about nursing was a positive experience.  Now, overall, we are very thankful for the extra help we have received with Abby. But there are also a few things I will NOT miss!  Like... *  ...keeping paper towels in the bathroom instead of a hand towel because the nurses can't use them.  It creates SO much trash and gets expensive! *  ...cleaning up after people who are not part of my family.  The nurses we have now are great about this, but others have not  been neat.  There have been many spills on my carpet, marks on my walls, crumbs down in my chair cushion, trash left on my floor, dirty dishes they used in my sink...I have enough messes to clean up as it is! *  ...having to get a doctor's order to give my chi...

Wow, I haven't blogged in a week.  It's weird to not do something when you are so used to doing it every day.  For a long time, blogging was therapeutic for me.  But I never want blogging to become a chore or get in the way of my role as a teacher, wife, and mom. So now that our lives are changing once again and we are about to be 100% completely in charge of Abby's care for the first time ever (woo hoo!!), I won't be staying up until 11:00 waiting for the nurse with several hours of blogging time on my hands.  That means that blogging might be a little less frequent, but that's a good thing!  :)  We'll be spending more time doing "normal" family things this fall, like going to pumpkin patches, celebrating birthdays, and visiting museums.  Oh yeah, and Abby will be going to Baltimore twice a week for the entire month of October.  Gotta love those annual appointments!  Oy. What's been going on during my blogging hiatus?  Wel...

We got Abby's doll some glasses from Build-a-Bear, but they ended up fitting Abby perfectly! Is she cute, or what? They have actually been really good for getting her used to glasses without having to worry about her breaking an expensive pair.  If something happens to these, we're just out $4!  She is really starting to like them though, and actually hands them to me to put on her.  (Of course, they certainly aren't helping with the eye turning in!)   I'm seriously considering taking these to an eye care place and asking if they can put lenses in them.   We are just about at our wit's end after going to about a million stores looking for glasses!  We have one more promising place to go to on Friday.  After that, we're pretty much out of options and will begin the process of ordering online!  I'm really hoping that we find something, because the idea of ordering glasses without trying them on her bothers me.

My favorite only sister Amy had her 4th baby early Sunday morning.  I'm pretty sure walking the mall with me on Saturday helped get things rolling!  Lucy Jane came into the world at 2:44 a.m. weighing 6 lbs 11 oz and measuring 19 inches long.  She's beautiful!  Like her oldest sister and daddy, she has lots of dark hair.  Although she never opened her eyes for me, I hear they are also very dark! Caleb said, "I think she likes me!" when he held her.  Abby is quite enamored with her, but I think she is still confusing her with a baby doll.  She may or may not have tried to pull her off of the hospital bed by her leg....gotta watch that one! We're busy getting our baby fix and helping out with the older kids, so I'll apologize if I don't post too much for a few days. I will note that today marks two years since the first day of our new normal.  Today is the day I was medivaced to UMMC with preterm labor, and the start of what has been a crazy,...

Here's an early-morning picture of Abby sleeping with her favorite doll, Beth. And here is a picture taken just a second after, with Devil Doll!

The obsession continues!   Abby is going to be Hello Kitty for Halloween, her Hello Kitty birthday party will be just a week before, she has Hello Kitty band-aids over her trach hole, there are Hello Kitty stickers on various pieces of furniture all over our house, and Abby's Grammy made her a Hello Kitty blanket that she takes everywhere now. The girl loves the Kitty!  What can I say?

On November 3rd, our family will be speaking at the 30th Anniversary Gala for the Ronald McDonald House of Baltimore.  We were asked back in June, and we eagerly accepted because we love talking about RMH in any capacity!  We recently got more details about the event, and WOW is it fancy!!! I went shopping with my sister on Tuesday and managed to find an evening gown. Yep, an evening gown!  I haven't worn a formal dress since my senior prom!  (Well, is your wedding dress considered a formal gown?)  I actually found two, and am taking back one after showing both to Matt and letting him choose the one he liked best! We'll be going next week to get Matt fitted for a tux, too.  He keeps trying to convince me to let him wear a suit, but that's not happening.  It's a black tie event, so tuxedo it is! Although it's way out of our comfort zone, it's really exciting to go to such a fancy event.  I'm pretty sure I've never been to anything like it! ...

After a week of being trach free, here are some new things about Abby: *  She took her first bath with water in the tub on Wednesday.  The girl LOVED it!  She splashed and laughed the entire time, giving me quite a mess to clean up!  It was so worth it to see her so happy.  It's exciting that she can do that now that the hole is closed up! *  Abby sings  all of the time now!  She never did any singing when she had her trach, but she started singing just a few hours after getting it out.  That evening, I asked if she wanted to sing a song and she la-la-ed something very close to Twinkle, Twinkle, Little Star!  She now la-las all of the time, and I LOVE IT.  LOVE it.  This was one of the things I was most looking forward to with her decannulation.  It is so sweet! *  We went to the ophthalmologist today and he confirmed that she needs glasses.  Her eye has started drifting and she's nearsighted. ...

I finally figured out how to get the videos off of my phone and onto my blog.  I'm not sure I could ever do it again!  Moral of the story:  take important videos with your camera!!! Abby is so excited to be trach free! Caleb's first glimpse at Abby trachless.  Get your tissues.  :)

This is the last picture I have of Abby sleeping by herself without a trach. This is the first picture of Abby sleeping after having her trach removed! How far God has brought us!  She is so beautiful!

I don't know why my videos aren't posting.  I embedded them from Facebook, but I'm thinking that my permissions of Facebook are keeping them from being shown.  I am going to try another way, but probably won't have time until tomorrow night.  I'm sorry!!  :( Until then, contemplate the affects of three weeks of Kindergarten:  my son was playing "Having a baby" with my niece yesterday.  No more Baby Story when he's around!  Then he told me all about his girlfriend and how he stole her from another little boy.  She's beautiful and he loves her.  I asked if the other boy was upset, and Caleb's reply was no because he likes boys anyway. Is this what I'm in for????  (For the record, we had several discussions last night!)

Caleb's first glimpse of Abby without a trach!  Get your tissues.  :)

Two videos from the big day! Here is the actual decannulation.  It's so anticlimatic!  A lot of people couldn't believe that this was it...it's so simple, yet so HUGE! Abby got her voice back really quickly and spent the rest of the day saying, "No more trach!"

As luck would have it, Abby seems to have gotten an upper respiratory infection that didn't show itself until yesterday evening.  She started out with lots of drainage from her nose, but by bedtime, she was absolutely miserable.  She tossed and turned most of the night, sleeping only for short amounts of time and crying whenever she was awake.  Thankfully, her oxygen levels stayed perfect, so there was no reason to make any calls last night. Abby seemed even more miserable this morning and had a decent fever. I called our amazing pediatrician, who took the time on his day off to meet us at the office so that he could see her.  He really goes above and beyond for us!  After checking Abs out, he felt like she probably had a virus that lots of kids have been getting recently.  But since she just had her trach removed, he went ahead and put her on an antibiotic to kill whatever might be floating around in there.  Thank you, Dr. S!  You are so awesom...

October 27, 2010 was the last day that my daughter breathed on her own. If we want to get technical, Abby has never breathed unassisted.  She had a trumpet clearing her airway put it immediately after birth and was placed under an oxygen tent until she had her emergency tracheostomy at five days old on October 27th. To relive that difficult day a little...Abby had been really struggling to breathe, and the day before had given us enough of a scare that the emergency response team had been called in.  I felt completely helpless watching the team work on my little girl.  Saturation levels were down in the 30s (out of 100%) and we were constantly repositioning and stimulating Abby to try to improve her breathing.  It was becoming more and more evident that the trumpet wasn't working. I had gone to the rest room and was then heading downstairs to grab some lunch with Matt and bring it back up.  I popped my head back in Abby's room to let the nurse know we woul...

If all goes well, Abby will be trach free today!!  Here's a picture of what she might look like without a trach. (She does have a trach here, but it sure doesn't look like it!) I will post a trach free picture when I can, but it is hard to do sometimes at the hospital.  I'll definitely be uploading onto Facebook though! Happy Decann Day, Abby Joy!  We are SO proud of you! And just to put it all in perspective... Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see. C. S. Lewis

For my Abby Girl, who is going to be trach-free tomorrow!

I cannot believe that Abby will be trachless in two days.  Amazing. Really, our adventure starts tomorrow evening when we go to RMH.  We'll stay there Wednesday night and then head over to JHH at 6:45 a.m.  See why we are staying at RMH?!  Her surgery is scheduled for 8:45, but I wouldn't be surprised if they took her early.  JHH has been really great about being on time or early since being in their new building.  They have operating rooms for each of the specialties, which REALLY cuts down on the emergency bumps!  Love it! While under anesthesia, the ENT will check out Abby's airway one last time.  It's routine and we are not expecting anything strange, but he just wants one more peek.  He will also clean out her ears again, since she'll be under anyway.  Doctors can't see her right ear drum now that the tube isn't there (Abby's ear canals are special...), so our ENT wants to get a good look at it to make sure there isn't fluid bui...

I have been blessed this year to be part of the Secret Sisters program at our church.  They have graciously "adopted" me as somebody who might like an extra smile now and then.  Each month, I have a different Secret Sister who prays for me, sends me sweet notes, and leaves a thoughtful gift for me to enjoy.  I never know who is the Secret Sister that month, but the surprise is part of the fun! I have to say, I have been spoiled by my Secret Sisters!  I've received everything from a Reese's Overload package, to really nice lotions and body washes, to door decorations, to gift cards to get my nails done...many times, the notes and gifts came on days when I really could use a little encouragement!  Most recently, my sweet Secret Sister for August sent me a beautiful Vera tote bag!  I have a little  Vera fetish, so this was just about perfect. Secret Sisters, if you are reading this, THANK YOU for the encouraging notes, the gifts, and--most importantly...

Abby had a doctor's appointment the Monday before I went back to work, so we decided to make a family day of it and go to the B & O Railroad Museum afterward.   Caleb and Abby rode a little train around outside.  I wish I'd gotten video of Abby going, "Woooooooo!" the whole time like she was on a roller coaster!  It was a little small for Caleb's entertainment, but I think he still liked it. There are huge trains in the round house.  Most of them don't allow you to board, but there are a few you can climb in.   They had a satellite camera on the roof of the roundhouse.  Caleb thought it was the coolest thing!  We found the Ronald McDonald House on it. There was a nice play area there for the kids.  I love that Caleb and Abby can play together now.  I also love that Abby doesn't have to stop playing to eat!  :) It was a really nice "Goodbye to Summer" day with the family, complete with...

Hugs... ...and shoves!