Thursday, September 29, 2011

Not sure what is going on w/MRI??

I have a few quick updates:

1. Support the Journey Walkathon raised $1587!!!! Thank you so much for your support!!!

2.Ryder had a Mic-Key tube (GI-tube) placed last Monday (9/23). He is still sore, but slowly it seems to be healing. He isn't wanting to eat much lately, so we are relying on the tube more than we'd like to.

3. I got a confusing call from his neuro's nurse tonight. Ryder's MRI was on Sept. 16th. I haven't heard anything so I put in a few calls to his neuro the last couple days. The nurse called me around 5 tonight to let me know the neuro would be calling me w/in the hour and to expect his call on my cell. Then, an hour later she called me back and said that the doctor wants to consult with other specialist about his MRI because he doesn't agree with the report. hmmmmm--not sure what to think of this at all??!!!!! She said he will call me next week after Tuesday (when he can speak w/other specialists and compare w/previous MRI's). I am worried and trying to think of what is going on- but I know this won't help. I'll try to not think about it until next week I guess;(

Meanwhile---I will be keeping busy with nursing school. It is 10X harder than I thought it would be!!!!! Back to studying. I'll update you when I hear what is going on.

Sunday, September 18, 2011

Full of LOVE

What an absolutely AMAZING experience! I am still beaming after the walk for Ryder yesterday:) It has been quite a rough year after learning about what is happening to our baby. There have been plenty of days where I've wanted to just stay in bed and cry. Let me tell you though, after yesterday- I am re-energized and have a heart so full I'm ready to welcome life's challenges, knowing we have a wonderful support system that we can lean on:)

I was so very touched by those of you that took the time out of your busy schedule to show our family that you care:) There were a few people in the middle of moving, a few sick friends/ injured, 1 that was 8 months pregnant, friends with multiple children with leukodystrophy/ special needs, supporters that have never met Ryder, but follow his blog, past and current co-workers and students, the boys football buddies and parents (they even had a game yesterday!!), old neighbors/good friends, several people drove more than an hour, while others were caught in freeway closures, old high school friends, friends of my sister, more than half w/ a full day of plans and little ones to wake up early,a lady celebrating her birthday, the 31 consultant I worked with for a while (who donated half the water!), Ryder's neurologist and wife (who had to work after the walk) and even a group of supporters in Chicago got together for a walk to show Ryder support!!! I just want you all to know that I truly appreciate you taking the time out of your day to be there for us:) It meant the WORLD to us---and I've needed that lately;) XOXOXOXOXO

I also want to give Renee and Scott another HUGE THANKS for organizing the whole event and rounding up raffle items, food and coordinating it all--Love you guys:)

For those of you that couldn't attend, thanks for the encouraging words and donations:)
I will give you the total amount raised once Renee closes the fundraiser account (I believe she said Tuesday).

I'll also upload pictures when I get them from Scott & Renee.

On a side note---Ryder fell and banged his mouth on one of the kiddie mall rides. When I got home I noticed he had chipped his tooth :( Does anyone know where I can purchase a huge bubble to keep him safe in???!!! Poor kiddo. Tyler was excited that he and Ryder have a matching chipped tooth now.

Well, I have a full day of studying (yippee:) Just wanted to share some about the walk yesterday with you all!

Thursday, September 8, 2011

Sad today about my little guy:(

I brought Ryder to the ENT for a follow-up exam from his ear infection. I also asked the doctor to conduct a hearing test per advice from the "sub" pediatrician (she said ears and eyes need to be followed with kiddos w/leukodystrophy). Ryders ear infection in his right ear has cleared up and looks normal. I was shocked to learn that Ryder has hearing loss in his left ear. His right ear has been having the recent infections, but his hearing seems fine in that ear. The procedure is being scheduled to put Ryder under anesthesia so that they can test for the percentage of hearing loss. A hearing aide may be in Ryder's near future. He will be getting glasses later this month as well.

I am concerned that Ryder will be under anesthesia 3 times within a month to month and a half. The doctors haven't shown any concern about this, but I am putting in calls to every doctor of Ryder's to see if I should be worried.

I also have been calling the pediatric surgeon because there still is not a scheduled date for his G.I. tube placement. He continues not to drink as much as he should and I am worried about dehydration again. I give up on the NG tube because he just pulls it out after one use. It is traumatic for us all to insert the tube especially when it is daily now.

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:)