Decisions
First, we want to thank everyone for giving us time to think and pray and make some difficult decisions without interference. It is greatly appreciated and has made our decisions this week much easier. We would like to share some of the decisions we have made. Please do not second guess our choices, as they were not easy, but are going to prove to be the best for Isaac; which is all that is really important.
Neurology: BAERS test will be conducted on Wed., April 23rd. It is commonly known as a newborn hearing screening test. He never had one, because it was not important for us to know whether he was Deaf of not. However, if they can track down any misfires on the hearing pathways of the brainstem, then they will have more evidence of misfires elsewhere. This is simply the least invasive, most informative way to go for now. It will not tell us anything specifically about his apnea, but will hopefully provide some clues as to what is going on at his brainstem!
Hematology: He does not have any other symptoms of ANY hematological diseases, syndromes, or disorders. We are going to monitor his blood every 3-6 months for both platelet levels and lactic acid levels. We are not going back to Dr. Cushing at this point. She is unconcerned about his platelet counts without any other symptoms.
Pulmonology: We will no longer be seeing the nurse practitioner, Karen Braniff, whom we adore, but will be seeing Dr. “A” (I think it’s Abulhamid, but I wouldn’t place a bet on it!). He is very knowledgeable about apnea and other sleep issues and is only one of three pulmonologists in the state that deal with them. Dr. A is our assigned pulmonologist, but we have been seeing the nurse practitioner because his case is not considered to be as “high need” as others with diseases like spina bifida, cystic fibrosis, extreme GERD, etc… This is no longer the case. On May 30, we will see Dr. A, in hopes of having an apnea monitor with a pulse oximeter interface ordered and covered by insurance. We will not be scheduling a sleep study for June if we get this instead!
Pediatrics: Dr. Wayne has passed us along to Dr. Henry Marcus. He works out of Botsford (our hospital of choice) and has over 25 years of experience as a board certified pediatrician. Dr. Marcus is an advocate of attachment parenting and selective vaccinations. We are excited to get to meet with him in June or July. Dr. Wayne will be his primary care physician until we get everything moved this summer.
Emergency Room Visits: Isaac was hit with a golf club on Wednesday night. He has a nice gash on his forehead above his left eye. He is no worse for the wear and is tolerating his bandage changes like a champ! The doctor thinks his scar will be minimal because of his age, especially if we follow all the rules for the next year. Please do not panic, another kid hit him and has been more emotionally scarred than Isaac will be physically.
Please continue to pray for us. As tests are done and results come in more and more decisions will have to be made. We need to have a lot of wisdom and discernment in what is necessary and what is not. Please pray for Isaac as his apnea is certainly not any better than it was in December, and in fact seems to be getting more and more exaggerated. Please keep our doctors in your prayers, too. I will list them on another post, so you know who they are and what part they play in Isaac’s care.
Most importantly, more than we want Isaac to be healed and whole, we want our Jesus to be magnified! His Name will be famous and all glory will be due Him regardless of what transpires from one day to the next! Of course, we want Isaac well, but not for selfish reasons, but so that we can say “see what a marvelous God we serve!”.
We love each of you. We look forward to seeing a lot of you in the coming months. We hope this finds you well and enjoying the wonders of spring!!
