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Apr 28-May 04

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It's hard to believe it has been nearly four months since our last update. We continue to be blessed in so many ways. There has been no sign of infection since the scoliosis surgery and Emmie has been doing great! We have all (especially Emmie) been very busy since school started back. I am back to work full-time with a lot of flexibility to take care of Emmie’s scheduling, appointments and supplies. We are so grateful for our Estes Hills and Phillips Middle school families. 

In August, Emmie got to go to in-patient rehab at the UNC Hillsborough campus. This was something we really wanted to happen after all of her corrective surgeries. We were there for 2 weeks (of course, one of us or Paul’s parents always spent the night and was with her at all times) and Emmie worked really hard the whole time. She got at least 3 hours of therapy 6 days-a-week. It was not always easy and sometimes we could tell she was getting frustrated, but she stuck with it and it really helped her get back on the right track with her recovery. We really appreciate the staff for all of their dedication and kindness.

Since then, Emmie has gotten back on her normal out-patient therapy schedule: PT twice-a-week, OT and Speech once-a-week at the rehab center, in-home PT once-a-week and OT, PT, Speech and assistive technology from her school once-a-week each. Her homebound school teacher comes four days-a-week to work with her as well. Ms. Issac, Emmie’s voice and keyboard teacher since 1st grade, comes twice a week for music therapy.  Emmie and Ms.Issac have had a close relationship for many years. Emmie also has an incredible new day nurse, Marie, who works with her on her therapy goals every day - She and Emmie have an amazing bond. 

All of these amazing therapists and teachers are working diligently to increase Emmie’s ability to communicate more consistently. Right now, she is working on using two mechanical switches. It takes a lot of effort for Emmie to work the switches and comply with physical demands, but she always tries her best. She can also do a slight thumbs up with her left hand and still sticks her tongue out intentionally. Once she has help sitting up, she is able to maintain her balance with minimal support for 30 minutes at a time. She is also able to hold her head up, lift it forward and backward as well as make small turns side to side. Building new pathways to make voluntary movements is slow and tedious work, but benefits her recovery beyond just regaining gross motor movement. We are so incredibly proud of Emmie’s determination in everything that she is challenged with.

Emmie enjoys listening to music, watching shows, being read to by Mimi and Pappy (Paul’s parents), and having her hair washed and blow dried. She loves going out on the deck when the weather is nice, my Dad has put in a ton of work to make it safe and convenient for her wheelchair. She enjoys all of the interactions she has with therapists, teachers and especially nurses, she has always been a social butterfly. 

Last week, Emmie had a Chest CT and follow-up with her pulmonologist. He told us that her lungs have been healing very well, which is evident in her strong breathing, even during strenuous work. We are still on track to have airway reconstruction in the spring. That is a major factor limiting verbal communication, at this point. We continue to pray that with this surgery and eventually getting her trach out Emmie will talk again. We have been shown time and time again that miracles do happen and that God continues to bless Emmie. 

Both of our families have done so much to support Emmie’s recovery. Ty and his dad, Kevin, have organized and sponsored multiple fundraisers for Emmie back in Auburn where she is well-known and well-loved. We dearly appreciate all of you, your steadfast prayers, love and well wishes. We would not be where we are today without you all.

Miracle2022! EmmieStrong!

 

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