Guts- so much fun!
In support of
Ailah Rose Hardy
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Ailah Rose Hardy
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The last few weeks have felt like a lot of waiting, testing, and advocating as we continue searching for answers and preparing for some big milestones ahead.
Recently, Ailah completed a SITZ marker study, which is a test used to evaluate how quickly material moves through the digestive tract. She swallowed special markers that show up on X-rays, allowing doctors to track their progress through her intestines over several days. Her follow-up imaging showed that a few markers were still present in her colon, which may provide important clues about how her digestive system is functioning. We are currently waiting on the doctorβs interpretation and additional lab results to determine what these findings mean and what our next steps will be.
One possibility being discussed is more advanced gastrointestinal testing, potentially including an endoscopy and specialized catheter-based studies to gather even more information about how her intestines are working. We are hopeful these tests will help uncover the root cause of some of the challenges she has been experiencing.Β Itβs definitely not normal to have had c-diff (at least twice), ecoli, salmonella, by the age of 6
At the same time, we have been dealing with persistent thrush for nearly a month. Despite treatment, it has been slow to resolve. Lately, Ailah has had very low energy, and I can tell her tummy has been bothering her. Watching her feel uncomfortable while we wait for answers has been incredibly difficult.Β It also prevents her from sleeping well (so we both donβt get sleep) or preforming in therapy (just screaming in pain at the therapists).Β
On top of everything else, I am currently navigating an insurance appeal and fair hearing process in hopes of obtaining approval for the highly recommended orthopedic surgeon we want to perform Ailahβs guided hip growth surgery. Timing is extremely important because the surgery needs to take place during the second week of July so she can begin her intensive NDT therapy shortly afterward. Coordinating specialists, insurance approvals, surgery schedules, and therapy timelines has certainly been an adventure, but we are doing everything we can to make sure Ailah has access to the best care possible.
As always, we are grateful for every prayer, message, share, and donation. Thank you for walking this journey with us, celebrating the victories, and helping carry us through the challenges. We continue to believe that every test, therapy, and treatment is bringing us one step closer to helping Ailah reach her fullest potential. β€οΈ
https://www.supportnow.org/ailah-hardy
The last few weeks have felt like a lot of waiting, testing, and advocating as we continue searching for answers and preparing for some big milestones ahead.
Recently, Ailah completed a SITZ marker study, which is a test used to evaluate how quickly material moves through the digestive tract. She swallowed special markers that show up on X-rays, allowing doctors to track their progress through her intestines over several days. Her follow-up imaging showed that a few markers were still present in her colon, which may provide important clues about how her digestive system is functioning. We are currently waiting on the doctorβs interpretation and additional lab results to determine what these findings mean and what our next steps will be.
One possibility being discussed is more advanced gastrointestinal testing, potentially including an endoscopy and specialized catheter-based studies to gather even more information about how her intestines are working. We are hopeful these tests will help uncover the root cause of some of the challenges she has been experiencing.Β Itβs definitely not normal to have had c-diff (at least twice), ecoli, salmonella, by the age of 6
At the same time, we have been dealing with persistent thrush for nearly a month. Despite treatment, it has been slow to resolve. Lately, Ailah has had very low energy, and I can tell her tummy has been bothering her. Watching her feel uncomfortable while we wait for answers has been incredibly difficult.Β It also prevents her from sleeping well (so we both donβt get sleep) or preforming in therapy (just screaming in pain at the therapists).Β
On top of everything else, I am currently navigating an insurance appeal and fair hearing process in hopes of obtaining approval for the highly recommended orthopedic surgeon we want to perform Ailahβs guided hip growth surgery. Timing is extremely important because the surgery needs to take place during the second week of July so she can begin her intensive NDT therapy shortly afterward. Coordinating specialists, insurance approvals, surgery schedules, and therapy timelines has certainly been an adventure, but we are doing everything we can to make sure Ailah has access to the best care possible.
As always, we are grateful for every prayer, message, share, and donation. Thank you for walking this journey with us, celebrating the victories, and helping carry us through the challenges. We continue to believe that every test, therapy, and treatment is bringing us one step closer to helping Ailah reach her fullest potential. β€οΈ
https://www.supportnow.org/ailah-hardy
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