Friday, January 8, 2010

Ryan

Thursday night was a long night with Ryan. He cried most of the night. There didn't appear to be anything wrong, but nothing seemed to comfort him. He finally fell asleep around 4 am.

When he woke Friday morning, he looked like he just felt miserable and he was running a slight fever. Dwight commented that he noticed the day before that his ear had a lot of waxy drainage. I called the dr and took him in immediately. The last 2 times he had a waxy drainage, he also had an ear infection.

Sure enough, he has another ear infection and even after a dose of Tylenol he was running a fever, just over 100 degrees.

Tuesday, January 5, 2010

Ryan's AFOs

Ryan and I went to get his new AFOs today. (AFO = Ankle/Foot Orthosis) Ryan's Developmental Pediatrician had recommended AFOs because Ryan keeps his toes curled under and his feet pointed downward. This will eventually shorten his achilles tendon. If his achilles tendon is too short, then he will require surgery before being able to walk. Hopefully, by wearing AFOs we can prevent a surgery.The same office that made Jessica's scoliosis brace made Ryan's AFOs. His are super cool.... they have Spider Man on them. After all, Ryan is a Super Kid!

Ryan's New Mic-Key Button

On the 28th of December, Ryan got his Mic-key button. (Seriously, I can't say or type "Mic-Key" without thinking of that one song: "Oh, mickey you're so fine. You're so fine, you blow my mind, Hey, Mickey. Hey, Mickey." I'm not even sure that's how the song goes. My family will tell you I have a real talent ... okay, they wouldn't use the word talent ... for changing the words of songs and making them whatever I want them to be. And, do you know what that song is about? I just learned recently. I had no idea. I thought it was a clean wholesome song. Who knew? ... Oh, and the other song that I think of is of course: "M-I-C-K-E-Y M-O-U-S-E. Mickey Mouse. Donald Duck. Mickey Mouse. Donald Duck....)

Oh, yeah ... I was telling you about his new button.

A Mic-Key Donald Duck button is another form of a feeding "tube". When they first did Ryan's surgery, they used a traditional feeding tube because there are some known problems with the MIC-key tubes balloon deflating. I'll explain ... On the inside attached to the other end of the "tube" is a little balloon that is filled with saline solution. This balloon keeps the feeding tube/button in place in the stomach. If it deflates, it will come out. When they first do the surgery, if the button/tube becomes dislodged, it is a very serious event. Now, after 6 weeks, if the balloon deflates the doctor tells me I just need to put it back in and reinflate the balloon. I hear it's fairly common and fairly easy, but I keep hoping it just doesn't ever happen.

So, here's a picture of his new button. (If you scroll down to the end of November, you can see a picture of the first feeding tube.)The big advantage to this button is that it doesn't have a long tube that is always moving around. I was always nervous that we'd accidentally snag the tube and thus pull it out. However, the disadvantage to this button, is that you have to hook up a tube to attach a syringe to release gas from his belly, and it only accepts a particular type of syringe. Unfortunately, I only have one of those syringes. I should probably figure out how I can get more of them.

The other really big advantage is it doesn't seem to create as much hypergranulation tissue. If you're curious to see what granulation tissue looks like, click here. (If you have a weak stomach, then just don't look.) Hypergranulation tissue is a fairly normal process. It's just the body's way of fighting the g-tube because it doesn't think it belongs in the body. Most kids stop creating it after about the first 3 months.

I'm pretty comfortable with medical procedures. I don't have a weak stomach. I don't usually feel bothered by watching medically necessary procedures on myself or my children. In fact, I wish I could watch each surgery, etc. I would feel more comfortable with that. HOWEVER, watching the hypergranulation tissue being cut off and subsequently treated with silver nitrate was heart wrenching. I felt so sad for Ryan. I hope to never have to see that again. We now treat the first sign of hypergranulation tissue with a little silver nitrate and it seems to be keeping it to a minimum.

A picture of Deborah

Happy Day!

Monday, January 4, 2010

Updates on Ryan's Stuff & on My Cancer

We are still struggling with Ryan's feeding issues. The past week or so, he has dropped back down to about 14 ounces each day. If we give him more than 2 ounces, whether by mouth or by tube, then he starts to choke and gasp for air. It's scary. Today Dwight spent the day at home with Ryan, and fed him about 1 1/2 to 2 ounces every hour. It's nice that we were able to get that much into him. Hopefully, we can continue to do that until we can get into see a GI Specialist and get further directions.

In other areas...

Today I scheduled an appointment with a Metabolic Geneticist to explore the possibility of him having Inborn Errors of Metabolism. We'll be going in April.

I need to call tomorrow and schedule an 18 month well-child care check up with our Pediatrician.

Ryan has a follow up appointment with the Neurologist on Wednesday. Since I will be at treatments, Dwight will be taking him. That will be interesting.

Also, tomorrow we will be picking up AFO's for Ryan. AFO's are little braces that he will wear on his feet. The purpose is to keep him from pointing his toes downward all the time (like he currently does). If he continues to keep his feet down, his Achilles will be too short for him to walk. Thus, it would require surgery. It'll be interesting to see how Ryan responds to them.

As for me, my spots are getting smaller ... and redder. Radiation has been good to me. My skin is a bit irritated and crazy itchy, but other than that, nothing bad and it appears to be working. :) I have 2 more radiation treatments and then I'll be done.

On Wednesday, I have a follow up appointment with the Oncologist to find out if he thinks the treatments are working. I'm not sure what criteria will be used to judge it. It seems to me it's working. I also have my 5th treatment on Wednesday. Hopefully, it will go as well as treatment #4. Treatment #4 just caused some mild nausea and a severe headache for a few days. So, I'll let you know.

I should get to bed. Tomorrow is a really busy day.

PS I still need to tell you about the job stuff. I haven't forgotten.

Christmas Update

I'm late with the promised update.

Christmas was wonderful. We have said for years that we need to do smaller Christmases, and this year's Christmas was smaller. Yet, it was just as wonderful as any other, perhaps even more so. I think everyone was happy and content with their gifts. That's an accomplishment when you're buying for 6 kids.We received so many generous and thoughtful gifts this year. Thank you all! For the tree! (It's still alive!) For the Angel of Hope! For the yummy smelling candle! For the luxurious robe! And, the slippers! The pampering bath items! The kitchen stuff! The fondue pot and chocolates! The talk CD that I really needed to hear! The loaded tree! (Still in shock!) The basket! (We really did "snicker"!) The treats! The acts of service! The games for the kids! The frog eye salad! (still one of my favorites!) The food ... oh, the yummy food! And, of course, I can't forget "the freedom!" You all are so generous!

On Christmas eve we had the best carolers come to our door! Not only did they deliver yummy treats, but they really sang beautiful songs. It was fun to watch the little children. I wonder how the parents convinced their children to do it. I'm not sure my boys would actually sing. I suspect I'd find myself doing a solo as soon as the door opened if we ever went caroling.

We also had a traditional yummy ham dinner delivered to us on Christmas eve by our good friends. It was so sweet of them to spend their time on Christmas eve serving our family. (Sorry it took you so long to get to our house. Have I mentioned how much I dislike the gate?)

Last year I heard about another family's tradition of taking pictures as the children came down the stairs. I thought it was a great idea and decided to adopt the tradition. Unfortunately, I apparently wasn't awake for some of these pictures.Really late on Christmas night after all the children were snug in their beds, Dwight and I heard this Christmas music coming from downstairs. At first I thought, "Who would be caroling at this hour?" Dwight went downstairs obviously not suspecting carolers and found the offending phone. One of our brilliant children had figured out how to set an alarm for midnight Christmas night on our house PHONE! Seriously. It played Christmas music. I didn't know our phone had any Christmas tunes. And, I really didn't know that we could set alarms on it. I guess it takes a child. (You suspect David? Me, too.)

A couple of years ago, I was awake at a crazy early hour on Christmas morning and after finally convincing Dwight to get up we discovered that all of our children were sound asleep. So, Dwight turned on the Christmas version of the Crazy Frog song ... really loud. On Christmas eve, Johnathon checked several times to make sure that Dwight was going to maintain this "tradition."

So, Christmas morning was started with the Crazy Frog ... and this dance performance by Johnathon. You'll need to turn your head to the side ... or lie down to watch this video. Sorry, but I have NO idea how to rotate a video.

video