- B
- K
- M
: : : : UPDATE 3/8/2019 : : : :
We have big NEWS to share.... Q got moved out of the PICU and into another unit. He was doing awesome there for about a week. Now he is at home with all his siblings and parents. The doctors have strict instructions for his aftercare. He still has a feeding tube in because he is not able to take in as much as food needed to keep him from having another flair up. His new journey will be doing Physical therapy for 3 hours a day, plus in and out of other doctor appointments. On this journey he will be going to Seattle, WA for some special care. I wanted to let you all know we appreciate the shares and donations. Its going to help the family with the new journey they will all be on.
: : : UPDATE 2/28/19 : : :
I wanted to start off by telling everyone thank you for the donations and prayers. All of it means so much to the family. Now for Marqwan he is improving everyday. He has recently had his breathing tube removed and breathing on his own. He is still weak, but getting stronger by the day. Unfortunately, he is not strong enough to eat on his own so he still has the feeding tube in. His lungs still have some mucus in it, so the doctors are treating him and working it out. The CK levels are getting lower finally under 5k (happy dance). He will not be getting blood work everyday for they are trying to avoid a blood transfusion. Q will have his kidney checked to make sure this poor baby doesn't have to go through dialysis. After Q gets stronger, he will then be going to Seattle. He will be going for continued treatment and physical therapy. Finally mommy got to hold him after 11 days of not being able to touch him at times.
** As we learn more about this gene we wanted to list some facts that we do know.**
- This is a condition that can come and go at anytime.
- Each time he has an episode its a life or death situation.
- No cure for its not very common.
-Every episode he will have he will need to be transported to Spokane.
: : : UPDATE 2/24/19 : : :
Qwan is in the PICU at Sacred Heart Children Hospital in Spokane,WA. There is a nurse in his room 24/7 monitoring his health. Qwan is still on a ventilator although he is breathing mainly on his own now. His CK levels have dropped from almost a million to a little over 11,000 normal levels are around 150 and doctors say he won't be in the clear of kidney damage until his levels drop below 5,000. Qwan is awake and can move his eyes to look around but still paralyzed at the moment. His sisters miss him dearly you must be 18 years old to visit so they have to sit outside the PICU in the waiting room. Your donations make it possible for family to be by Qwan's side during these hard times. Thank you for your prayers, shares and donations!
: : : UPDATE 2/18/19 : : :
Thanks to the help of family, Qwan was diagnosed with lpin1 deficiency, a very rare genetic disorder. Approximately only 35 people in the world have this rare disorder. lpin1 causes rhabdomyolysis that is melting or dissolution of the skeletal muscle, muscle cells become stressed and breakdown, leaking muscle protein, or "myoglobin" into the bloodstream with risk of kidney damage/failure. We are unsure how this will effect his life long term or how long he will be hospitalized. We appreciate all donations big or small anything helps! Below I have attached a link that you can read some information on lpin1. Thank you all! https://beyondtheroundabout.wordpress.com/about-lpin1/
This is MarQwan Dixon (AKA:Qwan) at only 6 months old. On February 16th, 2019, Qwan woke up that morning not himself. He was extremely weak, refusing to eat and gurgling mucus in his throat. While being rush to the hospital, his eyes would roll back in his head. When he arrived, they rushed him back right away. Kadlec nurses/doctors tried multiple times to get an IV in , but wasn't able to attain one in him. So they had to drill an IV in his bone. As all the staff worked on Qwan, trying to get the IV in and suctioning out mucus from his throat, they where unable to diagnose his condition. He was life flighted to Spokane's Providence Sacred Heart Children's Hospital. Doctors are still running test after test to try and find what could possibly be going on with this little guy. As of now they can't perform the correct treatment for Qwan for they are unsure of what's going on. He will stay sedated with tubes and assistants of breathing with medication that is for wide variety. These funds will help ease the financial burden on the family so they are able to stay in Spokane, WA to be with Qwan. The assistance of everyone's prayers and any donations, will also help with his 4 immensely distraught sisters that are unable to be with their parents and little brother at this time.
We have big NEWS to share.... Q got moved out of the PICU and into another unit. He was doing awesome there for about a week. Now he is at home with all his siblings and parents. The doctors have strict instructions for his aftercare. He still has a feeding tube in because he is not able to take in as much as food needed to keep him from having another flair up. His new journey will be doing Physical therapy for 3 hours a day, plus in and out of other doctor appointments. On this journey he will be going to Seattle, WA for some special care. I wanted to let you all know we appreciate the shares and donations. Its going to help the family with the new journey they will all be on.
: : : UPDATE 2/28/19 : : : I wanted to start off by telling everyone thank you for the donations and prayers. All of it means so much to the family. Now for Marqwan he is improving everyday. He has recently had his breathing tube removed and breathing on his own. He is still weak, but getting stronger by the day. Unfortunately, he is not strong enough to eat on his own so he still has the feeding tube in. His lungs still have some mucus in it, so the doctors are treating him and working it out. The CK levels are getting lower finally under 5k (happy dance). He will not be getting blood work everyday for they are trying to avoid a blood transfusion. Q will have his kidney checked to make sure this poor baby doesn't have to go through dialysis. After Q gets stronger, he will then be going to Seattle. He will be going for continued treatment and physical therapy. Finally mommy got to hold him after 11 days of not being able to touch him at times.
** As we learn more about this gene we wanted to list some facts that we do know.**
- This is a condition that can come and go at anytime.
- Each time he has an episode its a life or death situation.
- No cure for its not very common.
-Every episode he will have he will need to be transported to Spokane.
: : : UPDATE 2/24/19 : : :
Qwan is in the PICU at Sacred Heart Children Hospital in Spokane,WA. There is a nurse in his room 24/7 monitoring his health. Qwan is still on a ventilator although he is breathing mainly on his own now. His CK levels have dropped from almost a million to a little over 11,000 normal levels are around 150 and doctors say he won't be in the clear of kidney damage until his levels drop below 5,000. Qwan is awake and can move his eyes to look around but still paralyzed at the moment. His sisters miss him dearly you must be 18 years old to visit so they have to sit outside the PICU in the waiting room. Your donations make it possible for family to be by Qwan's side during these hard times. Thank you for your prayers, shares and donations!
: : : UPDATE 2/18/19 : : :
Thanks to the help of family, Qwan was diagnosed with lpin1 deficiency, a very rare genetic disorder. Approximately only 35 people in the world have this rare disorder. lpin1 causes rhabdomyolysis that is melting or dissolution of the skeletal muscle, muscle cells become stressed and breakdown, leaking muscle protein, or "myoglobin" into the bloodstream with risk of kidney damage/failure. We are unsure how this will effect his life long term or how long he will be hospitalized. We appreciate all donations big or small anything helps! Below I have attached a link that you can read some information on lpin1. Thank you all! https://beyondtheroundabout.wordpress.com/about-lpin1/
This is MarQwan Dixon (AKA:Qwan) at only 6 months old. On February 16th, 2019, Qwan woke up that morning not himself. He was extremely weak, refusing to eat and gurgling mucus in his throat. While being rush to the hospital, his eyes would roll back in his head. When he arrived, they rushed him back right away. Kadlec nurses/doctors tried multiple times to get an IV in , but wasn't able to attain one in him. So they had to drill an IV in his bone. As all the staff worked on Qwan, trying to get the IV in and suctioning out mucus from his throat, they where unable to diagnose his condition. He was life flighted to Spokane's Providence Sacred Heart Children's Hospital. Doctors are still running test after test to try and find what could possibly be going on with this little guy. As of now they can't perform the correct treatment for Qwan for they are unsure of what's going on. He will stay sedated with tubes and assistants of breathing with medication that is for wide variety. These funds will help ease the financial burden on the family so they are able to stay in Spokane, WA to be with Qwan. The assistance of everyone's prayers and any donations, will also help with his 4 immensely distraught sisters that are unable to be with their parents and little brother at this time.