Sick again poor kid!

Ryder is still having a hard time balancing, eating, drinking and is just all around unhappy this week. Last night was very rough. He didn't really take a nap in the afternoon and was up the majority of the night. I brought him in our bed to sleep with us and I noticed that he was jerking/tremoring throughout the night. It really scared me. I wasn't sure if it was seizures, dreams or just tremors. I was up watching him to figure it out, but I couldn't. This morning he had physical therapy. He was falling all over the place. He spit up, which he has been doing a lot lately even with thickend liquid. I am still waiting for the appointment to get his G I tube placed. A few hours ago I noticed drainage from his ear. It looks like he has another ear infection. This may be the cause of the last few days being rough. I will call the doctor tomorrow. I thought getting the tubes in his ears would help reduce infections. It doesn't seem to be the case though. I guess they are draining better than they used to at least.
Ryder's birthday is next week on September 5. I can't believe my baby will be 2!!!! I haven't decided if we should have a birthday party yet because the walk is in a few weeks. I guess I should start making plans for small party at least! Any suggestions that would be cheap yet fun for Ryder?

Noah has been doing great since his surgery. It was worse than I thought it would be. He had to get a spinal tap and stitches in the area. He was off from school for two days, but is doing just fine now.

Remember the walk is on September 17. René needs to have the total number of walkers by September 3. Please e-mail her at rlnap@hotmail.com. We will be singing happy birthday to Ryder at the end of the walk. I can't wait to celebrate with you and spread leukodystrophy awareness!

PS for those of you that commented on the Dragon (which I still love) it is on sale at OfficeMax this week for $39.99----awesome deal go get one!!

Grumpy boy

Ryder has been so grumpy the last few days. I figured out today that his second molars are coming through. Poor kiddo. He's been having trouble sleeping and just wants to be held. That's okay with me because I love to cuddle with him.

When he isn't feeling well, he gets very unbalanced. He has several new bruises on his head because he has been falling so much. It is like watching a very drunk person trying to walk. He is starting to get very frustrated when he can't do things that he wants to do. It's really hard to watch as a mom. I can't believe he's almost 2 years old! In just a few weeks, on September 5, my baby will be 2!!!

We got more test results back that came back normal. They were chromosomal array tests that were looking for Trisomal 21 and links to autism. I could've told you before the tests, that this wasn't the case with Ryder. Another gene test came back normal for Kearns syndrome. Ryder is now being scheduled for an MRI and a Mic-Key tube placement.

Noah has a scheduled surgery tomorrow morning. He will have a meatoplasy procedure done. He will be under general anesthesia to get his urethral opening widened. He will have stitches. My poor guy! Please pray for a speedy recovery. My first day of full-time nursing school begins tomorrow. Daddy will be bringing Noah to the surgery. I am so sad not to be the one bringing him. I will definitely be cuddling with him all night though once I get home.

September is Leukodystrophy awareness month. I'm sure you have all heard of the walkathon that Renée has worked hard on putting together. Flyers have been sent out, Evite and Facebook messages have been sent. This is the first ever mall walk in Arizona! Please, please, please help us make it a success! I know it is very early...... for those that know me I love my sleep! But it is just one day, and it would mean so very much to me that you make an effort to be there! I want to make leukodystrophy known to the doctors, therapists and community. Not only will Ryder benefit, but other families affected by leukodystrophy will also be helped. The walk is only half a mile. For those of you that can't walk, you could help Renée at registration. We need the numbers! Let's help make this world a better place for our children!

Love to you all,
Ryder's Mama

Support the Journey Walkathon

How many of us wake up every day wanting to make a difference but never take a step toward that goal?
The “Support the Journey” Walkathon will benefit a very special family in a time of need. The Hauer’s are a family dedicated to helping others. They have been faced with many challenges in life, none greater than raising a child with Leukodystrophy. Their son Ryder was diagnosed in 2010 and immediately had an impact on their lives. Although the Hauer’s lost their house, their vehicle, and even medical insurance coverage, they never lost hope!! To learn more about Ryder’s Journey, please visit rydersjourney2009.blogspot.com
This is a time where family and friends matter most, and it has always been the Hauer’s position to “pay it forward” when they are in a position to do someday. Put on a Blue Shirt and join us in supporting their very special Journey of Life.
What: Support the Journey Walkathon
When: September 17, 2011
Time: Registration begins at 7:00am – the walkathon starts at 7:30am
Where: Chandler Fashion Mall – Registration will be in the food court
Date to register by: September 3rd
Contact: Renee Rosner 480-510-5219 or email: rlnap@hotmail.com to provide names of all participants planning to walk in this event.
For those participating in the Chicago Virtual Walk, please contact Cassidy Anderson cassidy_anderson@hotmail.com
Donations: Registration for the event is a minimal of $10.00 donation.
Please register all donations to:
Bank: Chase
Account Name; Support the Journey
Account #: 980796254
All participants will receive a raffle ticket and complimentary refreshments.
We truly appreciate your support and look forward to making a difference together!!

Short update

I got a new toy for my birthday. My mom bought me the Dragon program for my computer. All I have to do is talk so it dictates everything I say. It's going to make keeping this blog updated much faster and easier! There's not too much to update right now. Les took Ryder to the CRS clinic yesterday. He recorded the session so I knew what was going on. It was funny listening to it. Les of course, is the typical guy. Questions like how old is Ryder's mom, Les answered 30... Ha ha only four years off. It made me smile though. It was just an evaluation meeting, so nothing much to report. I brought Ryder to a pediatric surgeon today. He is still at 24.4 pounds and 33 inches long. He was so happy today. He has been walking a lot. The last few days he has been unbalanced and gotten a few bruises on his head. I hope this will pass soon. The doctor and I agreed upon a Mic-Key tube. I will be getting a call soon to set up that appointment. I'm happy that I don't have to keep on putting in the NG tube. Poor baby.

Noah went to the urologist on Friday. Good news, it doesn't seem that he had Addison's disease. Bad news, he has an outpatient surgery this Friday to enlarge the hole on his penis. Ouch!!! Poor guy! A friend of mine has a son that went through the same thing. She said it's not too bad. I hope not!

My friend has been working up a wonderful fundraiser for Ryder and our family. I will get information out to you soon. For now, if you live in Arizona or Chicago, please save the date of September 17, 2011. I am so excited and feel blessed to have such wonderful friends and support in our lives.

This post only took me about 4 min.!!! I will update more frequently and soon! Thanks mom, for the awesome gift!

Whirl-Wind Changes--our life as usual!!!

I feel like time is just flying by and Ryder’s story changes so quickly! Instead of writing the long story of the conference, I think I’ll keep it simple with the updates since then. I’ll happily tell you more if you’d likeJ

1. Since the last update (concerned about Noah) I’ve spoke to 3 different doctors (ped, genetic specialist and neuro.) They have all reassured me that if Noah had Addison’s, he’d be sick and suffered from dehydration in his past. Noah is very healthy and active. He is super tan for our family (still a little worried in the back of my mind), but am still riding this out. He has an appointment with the urologist on Monday because he’s having accidents during the day, which is unlike him. Poor guy L
2. Ryder has had 3 doctor’s appointments in the last week and 3 different labs tests. His neurologist ordered another MRI and a few other leuko tests. The GI referred us to a surgeon for a GI tube (he pulls the NG tube out a lot) which is scheduled for the 17^th of August.. He continues to refuse liquids=dehydration and he’s constipated.
3. With the GI tube, life will be steadier for awhile. I decided to go to nursing school after all. I hate giving up the responsibility for full time care, but my Mom will take the role---which is so awesome! Her work is flexible with her working from home—luckily! Since Noah doesn’t seem to be a risk for ALD, I’m more comfortable with going to school.
4. Ryder is now being tested for T1T2T3 chromosome abnormalities (after researching I don’t think it’s the case), a chromosome array and 1 more thing that’s drawing a blank right now—hmmm!
5. The blanket I made sold for $200 at the ULF auction!!!!! I met so many wonderful families and doctors there. Mike and Helen (Coopers Mom & Dad) ended up buying the blanket for another family (after a biding war between the twoJ) we definitely made friends for life at the conference!!! I found out that Janet Read passed away today. We met her at the conference and spoke with her many times on the phone---a sweet lady that will be missedL
6. Ryder now knows how to take off his diaper---yuck!!! I turned around yesterday and he was actually squatting on the floor pooping, while holding his diaper—AAAHHH!!!! This is like the 5^th time (you’d think we’d learn our lesson—ha-ha). We’ll I am going to start potty training. It seems soon—much sooner than I expected, but since he’s taking his diaper off every chance he gets—it might be time???!!!!

 That’s all the updating for tonightJ all the boys are finally sleeping, so I should go to bed as wellJ

Good night—sleep tight and don’t let the bed bugs biteJ!!!