For many months, however, we have noticed that he was not hitting some milestones for a child his age. Doctors said that he was going to be fine and to give him time. We knew, though, that something was wrong. After we pushed, the doctors finally agreed that he should get evaluated for services in North Carolina.
Once the process started, they noticed that he was not responding as he should. They informed us that he needed several tests done and that they would begin services to help him. A hearing test at the ENT was determined that he failed his hearing screening. This was very odd to us as he never had an ear infection nor does deafness run in our family. We were then referred to a pediatric specialist and an audiologist. They would both run tests to further determine his state of hearing.
Last week he was officially diagnosed as severely to profoundly hard of hearing. The ENT also stated that his ear drums are twisted and he would need tubes in his ears. The type of hearing loss he has affected his ability to balance himself. He is also currently going through test to find out about his inability to walk. At this time we know he will also need braces to assist him with walking.
Currently, he has to go through several specialist visits a few times a week. Since he cannot speak, Ryan goes through speech therapy three times a week. One of those visits is with a speech pathologist. He has occupational therapy 2 times a week. One of those sessions focuses on eating and the other on sensory and fine motor skills. Those skill sets could be affected by the type of hearing loss he has but at this time no determination on this has been made until further testing is completed. He also goes through physical therapy once a week which helps him with his balance and walking. However, he is being evaluated for braces on his legs to help assist him with walking. We will have to replace these every time his shoe size grows. He has another upcoming Neurological appointment; however, there may be several more Neurologist appointments.
The more severe and worrisome test is scheduled for Friday the 13th of April. They will need to sedate him and test his hearing to determine if he is a candidate for cochlear implants or hearing aids. Though we have insurance, as you can imagine, it does not cover everything. Our responsibility for this procedure is close to $3,000.00 after insurance payment. The cochlear implants, if he is a candidate, will be another few thousand dollars, but the exact cost has not been given to us as of yet.
We relocated to North Carolina to start a new life here however; the financial burden seems to have followed us from New York. As we try to get all of the financial assistance possible, there are no guarantees we will qualify for it. These costs, however, does not cover the cost of missing work, transportation, or co-payments.
Ricky and I do not get paid for days we take off of work. Our jobs have been extremely supportive and understanding but I have maxed out on my paid-time off. There are no weekend or after hour appointments in NC. Everything is done during normal business hours. We have to take days off in order to get Ryan to his appointments.
This is just start of many more tests Ryan will need to endure. We have been assured that he will need a minimum of 4 more tests and visits by the summer. We are happy to finally get some answers and get Ryan the help he needs so we can begin to focus on how to better help and support Ryan’s hearing, communication, and become successful in everything he does in life.
Lastly, Ryan will also need special glasses that may not be completely covered by our insurances and therefore we are unsure of what this will cost.
It has been overwhelming but God has kept us. We know Ryan is in God’s hands and God’s will be done above all things. With that being said, as parents we want to make sure that we are able to provide him everything he needs to meet those goals and overcome any obstacle he currently faces. We do not want this to be an obstacle but rather a blessing.
We are asking for your help. We are asking for $5,000.00 to help for the cost of the procedures, copays, some travel costs, potential braces, any additional services and potential lost time from work. We know that you all have bills and have families that you support. If you cannot give I would ask that you continue to pray for my family. These are always helpful and appreciated.
We will keep everyone updated via Facebook about what is going on with Ryan, his progress, his upcoming test, procedures, and anything new developments.
Again, we are eternally grateful for any donations and/or prayers. Love you all very much.
The Guadalupe Family
--Ricky, Iraida, Krystopher, Jonathan, Megan, and most importantly, Ryan!
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