Friday, September 2, 2011

Some exciting news, some not so much & caught purple handed:)

I have several things to report today. Some are exciting and some not so much. Since I am an optimist, I will report the exciting stuff first :-)

1. I got news yesterday from RenĂ©e that Ryder's neurologist called her and will attend the walk on the 17th with his wife. How amazing is that! This doctor is so dedicated, caring and considerate. I have never met another Dr. quite like him. He gets back information super fast and truly listens to my concerns. A friend who's children also see him, contacted Dr. N about Ryder and our bad experiences w/past neurologists. Long story short, my friend contacted this doctor at night through e-mail. He responded in 5 min.! He saw  Ryder the next morning! He's a good person and I recommend him to anyone needing a pediatric neurologist! Anyways I just wanted to share this because it made my night and I was still smiling today about this:)!

2. A cousin's daughter attends chaparral high school. In her anatomy and physiology class they are learning about leukodystrophy. They just finished watching the movie Lorenzo's oil. I am thrilled that they are learning about leukodystrophy in school now! Off the subject a little bit, Lorenzo's oil is a great movie. However, to me: Lorenzo's oil is to leukodystrophy as the movie Rainman is to autism. There are 40+ leukodystrophies known to date. There are a range of symptoms and severity's. I would love a chance to bring Ryder to chaparral high school and introduce him to the class. Not only would it give them a first-hand look at some symptoms of leukodystrophy, it would also help them put a face on leukodystrophy. Who wouldn't fall in love with Ryder after they met him?! As a special education teacher and now having a child with special needs I am a firm believer in putting the child/person in front of the disability.For example,Ryder is a child with special needs not a special needs child. He is a child's with a brain disease not a brain diseased child. My skin used to crawl when others referred to my students as the autistic kids or the autistic classrooms. Remember, they're people first! Who wants to be pointed out by a disability or difference? I hope this gives you something to stop and think about when speaking to/or about a person with a disability. Okay I'm done with my tangent! Back on topic,  I am so excited leukodystrophy awareness is spreading in schools. Remember September is leukodystrophy awareness month so please help spread the word!

3. Bounce U (in Gilbert) has offered to have Ryder's birthday party there on Tuesday, September 6th from 5-8p.m.! If you would like to join us we'd be more than happy to have you! I'm not sure of the admission fee but I think it's $7 per kid and adults are free. I know there are a lot of coupons out there for bounce u. We will provide the pizza and cake! Just give me a heads up if you think you'll be able to join us. I can give you more details if needed. Thanks Bounce U !! Ryder is going to have a blast!

Okay the not so fun news now......

4. I brought Ryder to the pediatrician and she confirmed yet another ear infection. It was kind of obvious with the pus oozing out of his ear! Two days later I brought Ryder to the ENT. He suctioned loads and loads of gunk out of Ryder's right ear. The left ear looks fine. However, I have to bring Ryder back in a week to see if there is any more drainage or debris. Ryder got tubes placed in his ears in April, but continues to get an ear infection about once a month. I did mention that Ryder will be getting an MRI of his brain soon. The pediatrician also ordered an MRI of his ear.The ENT mentioned there might be a possibility of  cholesteatoma. I'm not going to jump that far ahead right now because that is a more serious issue requiring surgery. Let's just pray that his ear is clear next Thursday. I was in nursing classes all day today and grandma took care of Ryder. She did say there was crust on his ear when he woke up.
One day at a time I guess.

5 We continue to wait for the G.I. placement. Meanwhile, Ryder seems to have more and more difficulty swallowing :( Even his favorite foods such as cereal bars (nutrigrain) have been giving him trouble lately. He chokes/coughs/gags and at times vomits even on his thickened fluids/foods. He really does enjoy eating certain foods. I hope I don't have to see the day that he is no longer able to pleasure eat. Sadly this is the case in a lot of individuals with leukodystrophy. This birthday (on Tuesday), I intend to give him all the cake and ice cream he wants while he can still enjoy it!!!! Another swallow study will be performed after he gets his G.I. placement.

That's my update for now. I'm including a picture of what happens when Ryders' big brothers are supposed to be keeping an eye on him real quick ;) (Yes he pulled out his NG tube before this picture--I just had to place it again tonight---I HATE that thing!!)

I think he was trying to look older by giving himself a mustache...but I caught him before he could finish!!!hehe. He threw the marker when I walked into the room so he knew he was caught:)