Friday, August 29, 2014
While I enjoyed some of the stories shared in this book, I really had a hard time getting past the lack of structure and the many grammatical errors throughout. I felt like I was reading her personal journal rather than a published book. Considering this is not a pre-publication copy like others I have received, I was really surprised at the way the book jumped around. The numerous grammar mistakes were distracting and took away from the overall beauty of the book.
Wednesday, August 27, 2014
Disclaimer: I received this book from Book Looks Bloggers in exchange for an honest review. All opinions are my own.
Tuesday, August 26, 2014
Thursday, August 21, 2014
When I woke up on the morning of August 3rd, I felt so alone and anxious. We were leaving that afternoon to begin our VEPTR journey with our little girl, and we really had no idea what was going to happen. I was beaten down and just plain sad.
Little did I know what had been in the works for months. My amazing sister had planned a HUGE send-off for us that involved lots of lies and avoidances of truth along the way! Matt staged that he had to go pick up his laptop from the church (he knew just a tiny bit--enough to get us to the church). When we made the turn onto the road the church was on and I looked up into the parking lot...I saw cars.
TONS of cars.
And a huge line of people dressed in purple.
Some were in tutus.
Everybody had signs, balloons, and noise makers.
250+ people were there for us.
Did I mention it was a sea of purple?!?!
When we drove around and got out of the car, I hugged my sister and stood there in awe for a few minutes!
Bruce made a sweet little speech using the speaker on his police car. Then Pastor Wagner had everyone join hands and pray, which was pretty amazing to see in itself.
We spent the next hour or so greeting everyone and thanking them for coming. I tried so hard to get to everyone, but as I went through the pictures I realized that I missed some people! So I'm sorry if I didn't get to thank you personally!!
Now it's time for the photo dump. I know this isn't everyone, but I tried to include lots of pictures so that you could get an idea of how amazing this all was!!
(I didn't include names to protect the people pictured, just in case some weren't crazy about having that info on the internet!) :)
Wednesday, August 20, 2014
Monday evening, we noticed that Abby's incisions were oozing a bit and the drainage was enough that it was seeping through her shirt. Everything was pretty red and goopy, so I followed the nurse practitioner's advice and took pictures. I called first thing in the morning on Tuesday and emailed them the pictures. I got a very quick call back saying that we needed to bring her in...to CHOP...4 hours away. I begged and pleaded with them to let us go to Hopkins (you know, that world renowned hospital a mere two hours away?!), but they insisted that we go to the CHOP ER with the expectation to be admitted for a few days. Yay.
So, I called Matt (who had already left for work) and told him to turn around. We hurriedly packed some stuff in the suitcase and called my mom to make some arrangements for Caleb. I had just put him on the bus for his first day of school and now we wouldn't be there when he got home. Sigh. Between my mom and my sister, they expertly took care of everything with Chloe and Caleb. <3 p="" them="">
At Hopkins, when we have been told to go through the ER for respiratory issues, the ER is expecting us and a pulmonologist is alerted upon our arrival. We are seen pretty immediately by people who specialize in the reason we were there.
Not the case here, and I was kind of laughed at for thinking that would be how it worked. Nope. We saw three nurses, an ER resident, and the ER attending before we ever saw an orthopedics resident. And nobody in the ER had ever heard of VEPTRs or had even met Dr. Campbell.
Now you know my thoughts on residents. I'm not a fan. But I did like this orthopedics resident more than most because he didn't make any decisions without talking to Dr. Campbell. Dr. C couldn't see us because he was in the OR, but at least he was consulted.
After much deliberation, it was finally decided to start Abby on some antibiotics and change some of the steristrips. Yep, that's it. That was all they did after we trekked four hours and abandoned our son on his first day of school. This could have easily been done at Hopkins (or at the pediatrician's office, for that matter!), so we were a bit frustrated. Now we know. I think we'll be going to our pediatrician before we even bother calling CHOP. For whatever reason, they are anti-Hopkins and want every little thing done there...xrays, bloodwork, pre-op...everything!
All of this in the ER took quite a long time and we'd already made hotel arrangements because we were expecting to be admitted. The cancelation deadline for the hotel had passed by the time we were discharged, so we figured we might at as well stay if we had to pay anyway. And, it was rather late and Matt wasn't all about driving 8 hours in one day with a 4 hour ER visit in between.
We left this morning and got home around 2:30 after picking Chloe up. Caleb was very happy to see us and everyone is happy to be home! Abby's back is looking a little better with 4 doses of antibiotics in her and she was thrilled to take a bath in the tub instead of having the lie down on the counter. (I used this clear plastic covering from the hospital to cover up the wound and didn't fill the tub at all, but she was a much happier little girl!)
The things we do to get a vacation around here! :)3>
Friday, August 15, 2014
Since we walked in the door, I have been in high gear. I spent Wednesday trying to rediscover our living room floor, learn how to use our new oxygen equipment, and try to keep a very cranky little patient happy. On Thursday, I jumped back into work with two feet while my mom stayed with the kids. I came home before nap time so that she wouldn't have to worry about the oxygen stuff. Today was a repeat of yesterday, except that I got to eat some yummy crabs while Mom took care of the kids (that's hard to do with crab goo all over you!). AND, Abby was able to break out of the house-jail for a few hours and go to the farmer's market. She rode in the stroller most of the time and was really tired by the time she left, but she enjoyed petting the dogs and seeing some friends. I think she liked wearing real clothes for the first time too. :)
At this point, Abby's pain is minimal and she hasn't been taking pain meds very often at all. Her biggest issue is the eating right now. She refuses to eat much of anything at all and throws up just about everything we do manage to get into her. Today was better--she ate small amounts of yogurt and didn't throw anything up! This is progress. Let's just pray she continues to improve and eat more, because she really can't lose weight!
Thank you for all of your prayers! I have LOADS to blog about and lots of thank yous to give as well, but I wanted to at least give a quick update. :)
Monday, August 11, 2014
Sunday, August 10, 2014
Saturday, August 9, 2014
Friday, August 8, 2014
Thursday, August 7, 2014
Wednesday, August 6, 2014
Unfortunately, Dr. C wasn't able to put the VEPTR in. Abby's ribs are too flimsy and most are more of a ribbon consistency. Because the right side was so flimsy, he went ahead and opened the left side too--same thing. He did bone grafts for both sides to hopefully strengthen the ribs. We will try again in 3 months.
We knew this was a possibility, but didn't realize how big of a concern it was until this morning when he said he'd been studying her CT scans and just wasn't sure that they would hold the VEPTR. When the nurse told us they were closing her up and it was much earlier than we had anticipated, we knew that he couldn't do it. But, we are thankful for a doctor who makes tough calls and does what is best for the long term. Her recovery should be a little shorter, but we really have no idea at this point when she will come home.
THANK YOU for the outpouring of love that was shown to our family today. Abby will love all of the purple pictures that were posted! You all are so wonderful and it definitely helped me a great deal to know so many were thinking of my girl while she was in surgery.
Tuesday, August 5, 2014
We so appreciate your prayers. Abby is scheduled for first thing in the morning and we expect the surgery to go well into the afternoon. I don't expect that we will be able to see her until late afternoon/early evening. I will be posting updates on Facebook and on here as I can. I do have a blogger app now that makes things a little easier. Mostly, I am pretty sure I'll be staring into space or pretending to read my book while my mind is racing.
We would be honored if you would join us in wearing purple tomorrow to show your support of Abby! If you have a Joy Runners shirt that we sold as a fundraiser for RMH, that is perfect! Otherwise, dress yourself in purple and choose joy! I know that Abby would love to see selfies of everybody in their purple! You can post them on Facebook or email them to me. As she recovers, hopefully they'll put a smile on her face. :)
Thank you for all of your love and support. Abby is a fighter, and our God is greater!
Monday, August 4, 2014
Abby had pre-op today and had to be stuck 3 times before they got the blood they needed. We met with the anesthesia team and found out that our awesome anesthesiologist from when she had her MRI will be with her again! We are thrilled, as he is the only person who has successfully intubated her!
We still haven't gotten into rmh, and we had to move hotels because the hotel we stayed in last night was totally booked tonight. Ugh! We found another hotel that isn't so booked up and is close to Target and lots of restaurants, so we will hopefully be able to stay here until we get into rmh. The kids enjoyed swimming in the indoor pool tonight. We went next door to target to get Abby a bathing suit, since we didn't expect her to do any swimming. We went to dinner tonight at Joe's Crab Shack, where I got crabs for probably the only time this season. They were fabulous!
Tonight, please pray that we get into rmh tomorrow!! I really don't want to have to move on the day of her surgery!!
Also, please pray that the insurance issues we are having get resolved. It's a long story, but we have Obamacare to thank for this one....
Tomorrow, we plan to spend some time as a family visiting the Please Touch Museum, a Philadelphia children's museum. Then we will take Caleb to my parents where they are camping.
Now, the first character dinner with Mickey didn't go so well. Abby was less than thrilled with costumed characters coming up to shake her hand. But princesses are another story!! We already knew she was fine with meeting princesses, since she'd done great with Anna, Elsa, and Ariel. And she was thrilled about meeting Cinderella!
The princess even dressed up like Cinderella!