Amara’s road to recovery

Last appointment with our Riley team! Most of Amara’s doctors are at Peyton Manning now. But they were amazed by the progress she has made since her last appointment in April. 💜

Last night as we were completing our bed time routine I tucked Amara in bed gave her a kiss and hug and told her that I loved her. For the first time in almost two years she looked and me and said “I love you”. It came out a little mumbled but I understood perfectly. A perfect start to our vacation 💜

Quick update on Amara Jo. Yesterday her therapy team reached out and were concerned that she might be regressing a little bit. Amara has had a cold for a few days so they thought she might have a underlying infection that might be causing the regressive behavior and asked if I could schedule her a doctors appointment just to rule that out. Today we went and discovered Amara does in fact have an ear infection so we will be treating that and hopefully she will recover and stop the regression. If not we will be talking with neurology to discuss the next steps. As always prayers are so appreciated for my girl. 💜

Happy 8th birthday to Amara Jo! 💜

Amara update!

Life has been very busy for my girl. Yesterday I had the day off and got to go to therapy with Amara. Her therapist are pleased with her progress and that she keeps progressing. She is working on regaining her fine motor skills and is making more progress with speech. She is not talking quite yet but is vocalizing more and more, especially when she is excited. After therapy we went to see her pediatrician who is amazed at the progress she has made since her last regular appointment. (Most of her doctors are specialists so we only see the regular pediatrician once a year). Amara has come so far and I couldn’t be more proud. 💜

Amara Jo got her peg tube removed today! Such a small thing really but when you think about what that means in her recovery it’s huge. It means her doctors believe she will not ever need it again, it means we are moving forward..💜

Amara update:
My girl has officially started second grade and is adjusting well. We are down to having one therapy day a week because she is progressing so well..she is making more and more vocalizations and her personality is really shining through. She even made fun of me the other day!! Amara is still set to have her tube removed at the end of the month and is doing amazing at eating and feeding herself! However, I have started to notice that when I wash or brush Amara’s hair she is loosing quite a bit and it’s starting to look thinner. So I called her neurologist office to see if it was a possible side effect from her seizure medication. They said that it could be but it is a very rare side effect so they want to try her on some suppliments (zinc and selenium) to see if there is any improvement before we switch her medication. Obviously this is very upsetting for us because our girl has been through enough..

No mri today! Dr wants to wait because there is no indication that things are getting worse. She has made so many improvements since her last appointment that we are going to wait until next summer to do any imaging. Thanks for your continued support 💜

Good vibes for Amara today! She has a follow up mri this morning to see if there are any changes to the spots on her brain from her strokes. 💜

I know an update is long overdue for my Amara girl. Recovery is tricky while you are in it you don’t realize the progress you are making but then you look around and see that things are happening that just weren’t before. Amara can now unbuckle her seatbelt, mostly feed herself, take off her own jacket and keep up with her brother and sister. The rest is a work in progress. She still isn’t verbalizing much but can answer yes and no questions and has no problem getting her opinion out. We had an appointment with gi about getting her gtube removed and as long as she doesn’t loose much weight between now and the end of August we will be removing it then. 💜

Amara update!

We are discharged from Peyton manning and heading home! Amara is going home on seizure medication with follow ups with neurology in 3-4 months.

Thank you for all the prayers! 💜

Amara update!

Amara had a 7 minute seizure at school yesterday and was taken by ambulance to the Elwood ER. She was taken for a CT scan and a chest X-ray because there was suspicion that she may have aspirated. Luckily both of those tests came back clear. She was given some medicine to help her relax and some seizure medication. They then decided she should be transferred to Peyton Manning children’s hospital for a higher level of care. Upon arriving at Peyton Manning the neurologist was waiting on her he reassured us that it is not uncommon for someone who has had a brain injury to develop seizures. The medication they gave her to relax has made her extremely tired though she has woken up a few times for a few minutes at a time. Today they are still going to monitor her blood sugars and do an EEG. She is currently in the PICU but mainly so they can keep a close eye on her blood sugars.

Thank you for keeping our family in your prayers during this time!💜

“Recovery is a long term process where you grow and build on your successes and setbacks”

Amara update:

Today Amara did awesome at her swallow study. Her therapist was pleasantly surprised with her progress and while she did have a few minimal aspirations with thin liquids we are moving forward with Amara going back to a regular diet with nectar thick liquids. We will continue working with thin liquids until we feel she is ready. I put in a call to her GI to see what the next steps are for her feeding tube removal.

We went to the store, went to lunch, picked up her brother and sister from school and then went to play in the backyard. That’s when it happened, Amara had a two minute drop seizure. Once again I am thankful that I have had training to handle exactly that situation. After she stopped seizing I checked her sugar and it was at a normal level. I called her endocrinologist and we determined it was not likely caused from her diabetes. I then called her neurologist and she wants her under close watch until she can come in for an EEG.

As always prayers are greatly appreciated for my girl and my Momma heart 💜

Swallow study today! Good vibes for Amara Jo! 💜

Mom got to come along to therapy today! Amara’s therapist say she is improving by leaps and bounds 💜

Rehab doctor day! Pretty happy with her progress! 💜

💜🥳🎁🎈

Happy birthday!

Amara had a special day at rehab today!

Happy 7th birthday to Amara! It’s bittersweet watching your children grow especially during recovery I wish I could pause time but let’s be real I would never want to let them go. I love you so much Amara I hope you have the best birthday ever! 💜🎂🎁🎈🥳

Neurology day! “As long as you can see the progress she is making, there is progress to be made”💜

Amara’s Daddy just sent me this picture! Amara went in for surgery at 7 this morning and it went great! Now she is awake and getting ready to head home! So great full for our village! Thank you for your prayers 💜

Prayers and good vibes for Amara Jo today as she is having her second tube surgery to switch out her peg to a button..also older sister may have gotten a makeup set for Christmas 😂💜

It’s easy to say that this has been the worst year of our lives and in many ways it has..what we have gone through in the past 4-5 months has been so extremely difficult and heart wrenching..however it has also been a year that we have learned so much and have realized what really matters..I could list all the ways our lives are more difficult at the end of 2021 compared to the beginning but I want to end the year with a positive outlook for the future..This year made me realize just how fast and precious the moments with our children are..This year made me realize what in life is truly irreplaceable and that everything you ever took for granted could be gone in an instant..It has also helped me to realize how strong my family can be and that no matter what happens they will stand with me no matter what we need..This isn’t an ending it’s the beginning we can only go up from here..We got this 💜

Amara update..Tomorrow is Amara’s first official day of outpatient therapy she will be going three times a week to ball pediatric rehab..unfortunately most of her rehab will be in the morning when she has the most attention so I will be unable to attend with her since I have returned to work. However her aunt Jesse has stepped up and offered to take her for me! They will have so much fun together! She has been getting therapy at school and is doing well and settling in to a routine.. She has a ton of follow up appointments coming in the new year but we are ready! 💜

Amara and Elena at school on sweater day!

The entire team is incredible! Well deserved! 💜

Riley inpatient rehab unit earns impressive three-year accreditation Patients and families can attest to the value of the rehab program, now considered a center of excellence in the nation.