Friday, June 15, 2018

So Long, 5th Grade!

Caleb is officially off to middle school!  We are so thankful for all of the wonderful teachers he has had along the way.  He's nervous about the transition, but I know he will do great.





He was recognized for a variety of activities and won awards for academics, but the award we are most proud of was the Caring Award he was given for having compassion and for collecting soda tabs for The Ronald McDonald House.  Being smart is great, but having a good heart and compassion for others is what is really important in life.  Love that kid!

 

Time truly does fly!

Thursday, June 14, 2018

Amazing Appointment!

Abby had a pulmonary appointment today, and it was awesome!

I shared all of the pulmonary data we collect each day, and showed her how her high respiratory rates are trending down.  Abby also did another Pulmonary Functioning Test.  For the first time in a year, she was actually able to do the entire test without getting too exhausted to finish!  Her lung volumes have increased to 30%, which is amazing!  (It's all relative, but 30>15!!) 

After discussing with her pulmonologist, we decided that we could cut the morning bipap time and also reduce the amount of saline nebs we do per day.  This gives us SO much more freedom and makes her respiratory treatments so much quicker!!

Our pulmonologist was just ecstatic about how much better Abby was doing!  We are so thankful!

The icing on the cake was that Abby's blood draw was super quick and on the first try.  We were in and out in 5 minutes! 

Side note:  A year ago today, Abby came home after her 3 week hospital stay with sepsis.  She was coming home because they had done the best they could, not because she was actually better.  Abby was on almost continuous bipap, getting nebs 4x a day, and had NO energy at all.  Coloring caused her to be out of breath.  Seriously.  So today's news is just that much more awesome!

God is good, ya'll. 

Thursday, June 7, 2018

Accomplishment!

My girl brought home her first foot for PE today!  She has done 25 laps to earn it...a pretty big accomplishment for a girl who was never supposed to walk and who has a spinal cord injury!

PE is modified for Abby to meet her needs, but walking this much is still pretty challenging for her. Look at my girl go!!!!  We are so proud of her!


Monday, May 7, 2018

Great News!

Looooove good news days!!!!  

We came to Philly last night for appointments today and tomorrow.  We got into RMH, so Abby enjoyed playing with another little girl and racing remote control cars in the playroom.  

Today, Abby had a CT scan, X-rays, orthopedics, and plastic surgery.  Obviously, our biggest concern was Abby’s lung volumes and the future of her chest wall reconstruction.  

Abby’s lung volume on the right side (the side that has no veptr) has improved significantly!!  Dr. Campbell is really happy and we can schedule an expansion for the left side for August!  Her plastic surgeon was also pleased with her back healing!  Woo hoo!!  We are absolutely thrilled and thankful for the healing God has been doing in her little body!  

To celebrate after a busy morning of appointments, we visited the Please Touch Museum. 







The ceiling of the museum


Tons of toys make up this torch!!




Riding the carousel




The baby needed an MRI :)






We found a fantastic old fashioned ice cream parlor with 25 different flavors of soda and homemade ice cream.  Abby thoroughly enjoyed hers! 🤣



Now we are hanging out back at RMH until dinner.  The therapy dogs are coming tonight and Abs is so excited!! 😍



Friday, April 27, 2018

Amazing Week!

Abby has had a wonderful week at school!!  She has enjoyed getting to know her classmates “for real,” as she says. She’s tired at the end of the day and has been in bed by 7 every day, but it’s a good tired!  Her one-on-one says she has a group of mostly boys who hover over her and report her every move! 🤣. She is reminding them that Abby can do quite a lot! 






She spends most of her time on the swings at recess, but has also enjoyed drawing with chalk with friends.  Caleb’s recess overlaps, which they both love!







Resource is during her afternoon bipap, which is actually the safest way for her to participate in PE.  

The physical therapist comes often to PE to help modify activities for her.  She’s great!

We are so thankful to everyone at her school for all of their hard work in helping to make this a smooth transition.  It has been a great week!

Wednesday, April 25, 2018

Monday, April 23, 2018

There is Always Hope!

Today, my girl walked back into her school with her brother, hand-in-hand. 




After being diagnosed with sepsis in May that attacked her respiratory system and forced her surgeon to remove the hardware on the right side of her chest wall, causing it to collapse, Abby's lungs began to fail.  In October, she was officially diagnosed with lung failure and we were told that since she was no longer eligible for a trach due to fusion in her c-spine, there was really nothing else they could do.  We put her in a proverbial bubble and prayed that she would stay healthy.  We celebrated her birthday and Christmas, silently acknowledging that it could be her last.

Once again, God performed a miracle in Abby's life.  Her lungs began to improve and she became less reliant on the ventilator to help her breathe.  We started exploring the idea of her going back to school in the spring.  Abby continued to become more active and was able to play and enjoy time outside without gasping for breath. 

We had many, many meetings as we prepared for Abby's return to school.  Our pediatrician completed a gazillion forms, we typed up detailed notes, her one-on-one was trained, walkthroughs were done, and prescriptions were filled...all in preparation for today.

Cutting off her last countdown link!!


Best Day Ever!!


We will drive her to school because it’s too much equipment to put on the bus every day.


Today, my sweet Abby Joy is officially back in school where she belongs!  Her fabulous one-on-one will be with her every step of the way--the dynamic duo is back together again!





Quite honestly, we weren't sure we would make it to this point.  Back in October, it seemed unlikely that Abby would be well enough to be able to return to school.  While we were realistic, we never gave up hope and prayed that God would improve her health. 

And we are so very thankful that He did!





If you are fighting a medical battle right now, don't give up hope.  Abby is proof that God can perform miracles.