- M
- S
First off, we want to thank everyone for their continuous prayers, love, & support. As many of you know, Jr was diagnosed with a malignant brain tumor in Oct 2023. We spent several months in the hospital while he underwent multiple procedures & radiation pertaining to his tumor.
On January 11th we were finally discharged and even though we knew we had a long journey ahead of us, we thought we could start going back to a somewhat normal life. Jr started to go back to school & was slowly going back to becoming that silly & lovable 5 year old that he is.
On March 16th, we were hit with another obstacle. Jr had his very first seizure. After a couple of weeks & many prayers, they were able to find the underlying problem causing these seizures. Unfortunately, Jr was diagnosed with a rare autoimmune disease - Anti NMDA Encephalitis. After several trials & errors with his meds we were able to control his seizures and were set for him to continue treatment with IVIG to help with the Encephalitis.
Last week we saw an amazing change in Jr. However, during these last couple of days, Jr’s oxygen levels & respiratory rates have become a concern. After a repeated sleep study, it was determined that Jr has an autonomic dysfunction that affects his breathing. Our poor little man can’t catch a break
Jr will need to wear a BiPap while asleep & napping and will be requiring oxygen at night & occasionally during the day. That being said, he will need an Oxygen Concentrator that will suit his needs. Our insurance provided us with one, but unfortunately due to his PTSD, the noise it makes triggers him badly. Per our insurance & the distributor this is the only machine they can provide.
I have done some research and have found machines that are much quieter & that will give him the support he needs. Unfortunately, these machines are quite pricy and we are unable to purchase this on our own at this time.
We hate to be a burden to everyone, but once again we truly can use your help. Tavo & I are not working and are currently trying to work on getting on disability in the mean time. We have had no source of income these last couple of weeks which put us in such a bind.
We are asking for assistance in getting Jr the medical equipment that he needs. I know times are tough, but even sharing truly helps! Jr will get through this. I know he will We just gotta take it one day at a time ♥️
On January 11th we were finally discharged and even though we knew we had a long journey ahead of us, we thought we could start going back to a somewhat normal life. Jr started to go back to school & was slowly going back to becoming that silly & lovable 5 year old that he is.
On March 16th, we were hit with another obstacle. Jr had his very first seizure. After a couple of weeks & many prayers, they were able to find the underlying problem causing these seizures. Unfortunately, Jr was diagnosed with a rare autoimmune disease - Anti NMDA Encephalitis. After several trials & errors with his meds we were able to control his seizures and were set for him to continue treatment with IVIG to help with the Encephalitis.
Last week we saw an amazing change in Jr. However, during these last couple of days, Jr’s oxygen levels & respiratory rates have become a concern. After a repeated sleep study, it was determined that Jr has an autonomic dysfunction that affects his breathing. Our poor little man can’t catch a break
Jr will need to wear a BiPap while asleep & napping and will be requiring oxygen at night & occasionally during the day. That being said, he will need an Oxygen Concentrator that will suit his needs. Our insurance provided us with one, but unfortunately due to his PTSD, the noise it makes triggers him badly. Per our insurance & the distributor this is the only machine they can provide.
I have done some research and have found machines that are much quieter & that will give him the support he needs. Unfortunately, these machines are quite pricy and we are unable to purchase this on our own at this time.
We hate to be a burden to everyone, but once again we truly can use your help. Tavo & I are not working and are currently trying to work on getting on disability in the mean time. We have had no source of income these last couple of weeks which put us in such a bind.
We are asking for assistance in getting Jr the medical equipment that he needs. I know times are tough, but even sharing truly helps! Jr will get through this. I know he will We just gotta take it one day at a time ♥️