New Start

It's been a long time since I wrote. It is mainly because we moved from Michigan to Arizona. It has been a crazy time trying to get acclimated to the new environment, getting Hunter set up with the same medical care and help that he had in Michigan, and I'm a little guilty of doing some sightseeing.

Hunter has went all over Arizona and Las Vegas. Okay, honestly – we’ve had a blast since we have been done here.



The move went well. Our budget truck slowed us down, but we made it here in 4 days, instead of the planned 3 day trip we were hoping for. Hunter had a cold when we left Michigan. This set him behind, even after recovering from cold, he has needed oxygen on and off again throughout the night.

Hunter is eating more than I have ever seen him eat. I have him eating two meals a day. Hunter eats in small portions. But, this is a big improvement. I'm keeping him on a routine for lunch and dinner. I'm hoping to add breakfast soon. He still has his overnight feeds through his g-tube. I'm assuming that he is not hungry or interested in breakfast because of his overnight feedings. However, he is getting hungrier earlier and every day is making a difference in him. He still has problems drinking, and will not drink anything. So, the g-tube helps him stay hydrated and gives him the extra calories that he is not getting with his small meals.

We met with Hunter's Pediatrician here in Arizona. It is hard to compare him to his Pediatrician back home. I don't think I'll ever find a Pediatrician like he had in Michigan. I have expressed my love for Hunter’s Pediatrician back home, and I have to drop my high expectations in finding a doctor like him. His new one seems very good, nice, and patient. He asked us a lot of questions and seemed interested in Hunter. We were impressed and plan to stay with him. But, I have to admit that I cried driving away from his new Pediatrician’s office. It just wasn’t the same appointment experience I had in Michigan. It’s hard to trust the new one, like I trust his Pediatrician back home.

We also met with Hunter's new pulmonary doctor. They are calling Hunter's lung problems asthma now. Yet, we still have some Chronic Lung Disease of infancy that is rattling cages. His pulmonary doctor also seemed nice and the nurses in the office were very helpful. They referred us to all the places in Phoenix that could help Hunter get the help we needed. I have followed up with the Department of Developmental Disabilities, Foundation for the Blind, and have Hunter's case open with Early On. He had Early On in Michigan, and I'm so grateful for the nurse in that office for the information on where to turn and who to call. If there is help out there, I will see that Hunter gets it.

His pulmonary doctor has ordered another sleep study for Hunter. This is being done tonight as he sleeps. He has also ordered another swollen study. We need to get to the root of Hunter's drinking difficulties. His Pediatrician is in the process of sending a referral over to have Hunter evaluated for Physical Therapy, Occupational Therapy, and Speech. Our upcoming appointments will include an appointment with Hunter's new eye doctor, and cardiologist.

I have also been dealing with the University of Michigan Wheelchair Seating Services. They ordered the wrong walker for Hunter. It was too small. This is a very long story and I don’t have anything nice to say. So, I’m just going to end it with saying that after much yelling, screaming, crying, Hunter is getting the right size walker. We hope to have it delivered by July 1st. But, I am going to say that I was deeply disappointed at the effort it took to get my son the walker he needs to walk. I can’t believe that it took almost a year to get the right walker. I just hope that someone else who has handicap children do have not have the same experience as we did.

Our main concerns are Hunter's developmental delays, especially his speech and his low vision. We truly believe that he is outgrowing his lung problems and pulmonary hypertension. I also believe that he is eating much better. His diet is expanding. We just have to get him to drink fluid.