Monday, August 31, 2015

Caleb

I love this boy and his love for golf, Star Wars, fencing, Legos, history, and books.  He is one in a billion!  Have a great first full week of school, Bubs!







Saturday, August 29, 2015

I'm a Little Tea Pot

I took some props with us when we went for our family pictures.  I am so glad I did!  I love the way these sweet tea set pictures turned out.  The tea set was a special gift from Abby's Nina, so I'm happy to have it in some of our pictures.







Friday, August 28, 2015

100 Days!!!


Just 100 more days until Abby's magical trip to Disney World!  Elsa, here she comes!!  

Abby's Grammy made her this beautiful dress, so of course we wanted to get pictures of Queen Elsa in her gown!





Wednesday, August 26, 2015

Summer Recap


This guy started school yesterday and is now officially a 3rd grader!  I don't know how this happened, since I'm only 22, but... :)  He had a great day, and he is very happy to have some good friends in his class.  He also really enjoyed getting to know his teacher.  The highlight?  Finding out that he could check TWO books out at a time from the library!  Woo hoo!!  :)


To recap the summer a bit and say goodbye to sleeping in...oh wait, wrong house...I thought I'd share the highlights!

Caleb went to three day camps this summer.  First, attended space camp at our local community college and was really intrigued by all he learned.  Then, he went to a wonderful theater and music camp held at our church.  It was amazing how much those kids learned in just a week!  At the end of the summer, he attended a fencing camp run by one of his fencing instructors.  All fencing, all day!  It doesn't sound very interesting to me, but he loved it and learned a lot.  He has definitely found his thing!

Abby went to her first day camp too!  She attended a 1/2 day camp run by our local therapeutic recreation department, and she absolutely loved it!  There were only 3 kids with 2 adults, so they got tons of attention!  They ended the week with a fun pool party.

While we didn't do a big trip this summer in preparation for our awesome Disney trip in December, we did get away for a few days to Lancaster.  Our sweet friends graciously invited us to stay with them, and the kids had such a great time playing.  We took the kids to Dutch Wonderland, which is the perfect place for Abby.  Caleb may be getting a little old for it, but at least we squeezed out one more trip.

Matt traveled to Atlanta with the youth for a unique missions trip.  They learned about various cultures, and even visited a mosque and Hindu temple!  The group ran kids' clubs while they were there.  It really stretched everyone's thinking and helped them to consider different cultures.  He also went to Indiana for their annual youth conference.

Unlike past years, I did not teach any classes for the ESOL department this year.  We have one starting next Monday and I taught one over the winter, so we decided to take the summer off.  I'll be busy soon though!  

Instead, I continued my study of pediatric orthopedics and pulmonary medicine at Children's Hospital of Philadelphia!  Abby had her 15th surgery at the beginning of August and did very well. I learn new things every time we have a surgery because something comes up.  This time, my focus was on pleural effusion and how to keep my daughter safe from over-zealous residents.  Abby has bounced back from this surgery and is now at the same level she was before surgery.  She is still on precautions and will be for another 2 weeks, so we have to be careful until then. 

In between all of these adventures, we had the typical physical therapy, feeding therapy, speech, and medical appointments.  I tried to avoid "the summer slide" by doing learning activities with the kids as often as I could.  I can't say we did it every day, but they definitely worked hard.  Abby now has about 20 of her kindergarten sight words down pat, as well as recognizing the names of people in her extended family.  We are working on sounding out and blending words.  Caleb has a good foundation in multiplication now and is doing really well with telling time.  He is SUCH an incredible reader and loves to learn new things (just not necessarily the things I'm trying to teach him at the time!  Lol!)  He is reading 6th grade level books and flying through them, comprehending every little detail.  I can't wait to see how he takes off as he transitions in 3rd grade from "learning to read" to "reading to learn."  

Farewell, Summer 2015!  You were busy, filled with fun, and much too short.  Come back soon!!

Friday, August 21, 2015

The Routine

It is sooo hard for me to find time to blog again after we get home from a hospital stay!  I have so much to do with the house, Abby needs extra care, we are going to appointments, I'm making up for lost time with Caleb, work has started up again...my mind is racing!

Thank you all for checking in on us and asking about Abby.  She is doing well.  Recovery is a little slower this time, and she is still needing medicine most every day.  The VEPTR pushed one rib out really far, so Dr. C. had to break it and refit it.  That spot has been very painful for Abby and is sensitive to even the slightest touch.  Imagine the pain she had yesterday when a dog (not one we knew) suddenly jumped on her and knocked her down!  It was an Oxy night for sure last night.

She's pretty much back to eat the way she was before surgery now, although we are still doing a gtube feed at night for extra calories.  I'm hoping to be able to wean that soon as she eats a little more. Abby has also discovered she likes bacon!  For the first time ever, we regularly have bacon frying on the stove in our house.  Whatever Abby will eat, she can have!  Matt and Caleb are thrilled with this new development.  :)

We went to PT for the first time on Wednesday.  I gave her pain meds right before and she did great!  Our PT was so impressed with how well she did.  Besides the jumping, which she isn't allowed to do for 6 weeks, she's basically back to where she was before.  Her muscles are a little tight from being in bed for a while, but she is looking pretty good.

There is STILL no word on pre-k.  My friend's daughter at another school got her letter yesterday, so I'm hoping we will hear something soon.  I've been totally stalking our mail lady.  If Abby does get in, we need to quickly schedule a meeting to revise her IEP (it is currently written as if she is only getting speech and PT on an outpatient basis, not as a student in a classroom), and I also need to meet with all of the nursing staff to create her medical plan.  None of this can be done until she is officially a student.  Come on people!  Time is ticking away!!

So that's what has been going on here.  I'll try to be better with updates!  I have new family pictures to post too!!!

Monday, August 10, 2015

Ups and Downs

So after a great day yesterday, Abby had a lot of pain last night and today.  She was up almost every hour and really hurting.  We decided to stay another day to make sure her pain was under control.  It was better this afternoon, but she kept complaining of this one spot.  After mentioning it to Dr. C., he said that's where he had to do a lot of work breaking and manipulating the ribs.  (Ouch!!!). My poor, sweet girl!  No wonder it hurts there.  

I'm not going to say I think we will go home tomorrow this time!  Let's not jinx it again!  I'll just let you know when we are actually leaving!  Lol!  

Sunday, August 9, 2015

Total 180

So after a rotten day yesterday, Abby decided that she would turn things around!  She slept all night without oxygen and did great today.  Her repeat X-ray to check the fluid in her pleural cavity was much better (even without a chest tube!  Lol!) and she was in a generally happier mood.  She was a nasty little thing yesterday!  

She's still not eating great,, but she has tolerated all of her feeds so far, so that's good.  I'm hoping we will go home tomorrow or Tuesday.

Major shout out to my parents, who have been up here all weekend!  Today, I got a nap AND a walk outside of the hospital while they stayed with her!  I think Abby enjoys having someone other than me there as well. :)

Thanks for your prayers!

Saturday, August 8, 2015

Bumps in the road

Abby has had a few bumps the last few days.  She has been needing oxygen off and on, even while awake (and always at night).  After a ct scan of her chest to check on the veptrs, they found she has a pleural effusion (fluid around the outside of the lungs).  This is why she's been struggling.  It's nothing we haven't dealt with before, but still frustrating.  

Good ole Joanna Resident said she was going to call general surgery to put a chest tube in.  Ummm...have you talked to pulmonary?!?!  I educated her on how Lasix works wonders on fluid on the lungs (she had no idea...) and that she really needed to consult with Abby's pulmonologist before considering a chest tube.   Yeah....this batch of orthopedic residents is something special, I tell ya.  And this, ladies and gentlemen, is why I do not leave Abby.

 She is also having trouble keeping food down.  The first episode had blood in it, which was a little troubling.  The second episode was normal, but we still would really like for her to keep some food down!!

So while there was talk of us going home tomorrow, that's off the table.  I need her to do a day without needing oxygen while awake, and I'd like for her to be tolerating feeds.  

When I get weighed down by medical stuff, I get factual.  It's a coping mechanism, I know.  But we are all dealing with a lot right now, so we would love your prayers.    

Wednesday, August 5, 2015

A New View

We moved to another floor this afternoon...the surgery floor...NOT pulmonary!!! (This is exciting because it means she doesn't have respiratory issues!!). 

Abby is doing fantastic!! She sat on the edge of the bed 3x and stood next to the bed 3x as well!  I think tomorrow we will definitely get her walking.  She is such a rock star!

She did get sick this evening while eating dinner, so we slowed down her feeding rate.  I thought we had it slow enough already, but apparently not. 

We had a nice evening of playing with play dough and doing princess sticker scenes (sneaky OT...lots of reaching, punching, pulling, etc with both hands!) and she watched a movie.  It was a nice awake time, so I think she will sleep better overnight.  

God has blessed us so much.  We have an awesome little boy who is often the one "left at home."  He loves his sister so much and is her fierce protector (look out, bullies!).  This isn't easy on him either.  If you see him, give him a hug for me!

And we have an amazing little girl who is the bravest kid I know.  She goes through more than most will in a lifetime, and she does it all with a smile on her face and joy in her heart.  

Thank you Lord for blessing us!

Progress!!

We are rocking and rolling!!!  The foly catheter will come out today, she gets to eat a regular diet, AND she will be moving to the floor--orthopedics, not pulmonary!!!  (She has had to go to the pulmonary floor In the past because of breathing issues).  

I am just amazed at how much better she is doing this time.  If I had any question at all as to whether the veptr was worth it, I am now a believer.  She is doing so well!!

Post-op day 2

Abby is doing great!  Her pain is pretty well managed, but we also aren't making her do much yet.  She's on a little oxygen, but can probably come off when she fully wakes up instead of drifting in and out of sleep.  They are letting her have clear liquids and will get food today. 

 It actually sounds like we might move to the floor today! They haven't rounded yet to make it official, but 2 fellows said we would.  This is good news...the girl next to us sleeps with the TV blaring.  I finally asked her to turn it down at midnight. Her pulse ox also beeped all night because the albuterol nebulizer she has messes with the read...so yeah...not a lot of sleep!  I've come to expect that in the picu...or in the hospital in general!

A new Joe Resident came in at 5 am yelling "Abigail!  Abigail!  Can you hear me?!" Like she's in cardiac arrest or something.  It scared me to death!  

He just wanted to look at her back.  

Yeah, dude, you don't even need to wake her up to do that!  She was on her side!

One of Abby's wound drains hadn't been working and it was a little concerning because of the risk of infection.   For whatever reason, the drain decided to work at that moment when the resident was here. He did nothing (I rolled her, so it wasn't even that), but took credit for making it work. Lol!  She's draining like a champ now.  

I've come to the conclusion that orthopedic residents are a special, special breed.  They should make tshirts. :)

Tuesday, August 4, 2015

Amazing!!


Matt made a side-by-side comparison of the ribs.  I have many before-veptr X-ray pictures, but I can't find any right now!  I'll keep looking.  

The difference in Abby's breathing is remarkable.  She is so calm and taking great breaths, where previously her breaths were very shallow and fast.  I commented to the resident how much better her breathing isOrthopedics resident came.  I commented on how much better her breathing was than previously post-op.  He said it was amazing to see the before/after in the or.  He could see the ribs trying to expand, but they just couldn't.  As soon as the veptr was in, the ribs and lungs fully expanded and the breathing dramatically improved. I told him he needs to video that sometime.  SO cool!!!

Abby's life is nothing short of a miracle, and God has been with us every step of the way.  He has given Dr. Campbell such a wonderful gift and we are blessed to have him as Abby's surgeon.  Thank you all for praying!  Abby is pretty much just sleeping off the anesthesia with short painful times of being awake before the next pain pump dose kicks in, but like I tell her...every day will get a little bit better.  For today, we are thrilled with the success of the surgery!

2:30 surgery update

Dr. Campbell came to see us. He was pleased with the surgery and the way her spine straightened.  

This is the before:

This is the after:

We are now in the picu waiting room anxiously waiting to see her.  Thank you for all of your prayers!!!!




2:00 surgery update

They are closing her up and will get her to the picu when they are done.  Dr. Campbell should be out to see us soon.

12:30 surgery update

They just called out to say they are halfway done with the veptr (not really halfway done with surgery because of closing and such) and everything is going well.

Surgery update

Abby went back around 10:00.  The anesthesiologist was not going to let me go back with her, but I pretty much just insisted because this is all she knows.  I think he thought I was going to lose it or something, but I've done this too many times for that!  I'm definitely going to stick to requesting our favorite anesthesiologist from here on out. 

We are expecting the surgery to be around 4 hours or so.  I will keep you updated.  

And now...we wait.  Headphones on, noise blocked out!

Monday, August 3, 2015

Tomorrow is a Purple Day!

Abby's surgery is set for 10:00 tomorrow.  Everything went well with her picc line and MRI today and she's settled into her room for the night.  We have been to the playroom 4 times. :)

We will be wearing our #purpleforabby tomorrow and would love if you would too!  Please take a picture and post it on Facebook (with the hashtag #purpleforabby) or email it to me.  Thanks for showing support for my brave girl as she faces surgery #15!


Saturday, August 1, 2015

CHOP time already?!?!

Yes, it's that time again.  We are heading to CHOP tomorrow.  Abby will get her picc line and Mri done on Monday.  She will be admitted after that, then her surgery will be Tuesday morning.  

This is the same surgery she had in April, on the left side.  The recovery will be rough, but she is so tough.  

We would appreciate your prayers that everything goes smoothly and that she recovers quickly.  Thank you for loving our girl!