Tuesday, December 28, 2010

Children say the darndest things!

So today we had a new nurse at the house for the first time. She was great and we are looking forward to her working with us, hopefully for a long time. But that's not what this post is about. No, this post is about the fun little things that children say.

Let me set the scene for you: It's about 10 am. I am sitting on the couch having just finished my egg whites and arugula breakfast. Johnathon is somewhere in the house videotaping his Legos with his new camera and David is piddling around with something in the family room, mostly just avoiding his chores. Deborah is kneeling at the coffee table drawing for a while on a piece of paper with a pen that we got from the kitchen draw. The nurse is sitting on the other couch making notes as we talk about Ryan's daily routines.

Having noticed that Deborah was very anxious to share her new masterpiece, at the first break in conversation, I lovingly (and perhaps naively) asked her to tell me about her picture. She smiled and replied, "It's a picture of me naked in the snow." I laughed and replied, "Why are you naked in the snow?"

Are you ready for her reply? (Let me remind you: there is a nurse sitting on the other couch who has just met our family for the very first time. The first time.)

Deborah: "You left me there, Mommy, naked in the snow."

David is on the floor rolling in laughter. I'm hoping the nurse doesn't have a psychology degree and am wondering if she's looking up the phone number to CPS. Deborah has never even seen snow before.

Needless-to-say, I'm sure our family made quite the first impression.

Saturday, December 25, 2010

Merry Christmas!

I think was the latest we've ever officially started Christmas morning. Of course, Ryan and I were up several times through out the morning, but sometime after 5 he finally went to sleep. I didn't wake again until about 8.30 when Johnathon knocked on our bedroom door. The most surprising thing about that is it's usually me who can't wait to wake everyone up.

The morning got off to a slow start. We always have the children eat a little bit before we open presents and Deborah was lingering at the table. She said she wanted to go back to bed. The lure of presents didn't even seem to excite her. Eventually she said her tummy was hurting. I offered to let her go back to bed, but Daddy wisely suggested she just lie down on the couch in the living room. So she did.

I took my breakfast (egg whites over arugula with lots of feta cheese & a little salsa and a cold glass of high pulp orange juice) into the living room and staked out a place next to Ryan on the floor where I could open presents. Unfortunately one bite into my breakfast & Daddy's big feet knocked my glass of orange juice over. Luckily most of it was on the wood floor which cleaned up pretty easily and the rest was on my plate. Dwight was going to throw it away & make me a new plate, but that seemed quite wasteful to me. So, I had him just pour off the juice & it actually gave a really yummy flavor. Hmmm... maybe tomorrow I'll add it on purpose.

Anyway ... we soon got started. Daddy always passes out the presents. One to each person. We opened up a couple of presents and then Ryan started vomiting. Stuff like that with Ryan is just kind of part of life around our house so Jacob grabbed some rags, Jessica grabbed the cleaner stuff, I cleaned him up, and the festivities continued. Hardly a beat skipped.

A few minutes later Deborah was standing next to Daddy when I noticed what looked like peanut butter on her pajama sleeve. I suggested to Dwight that it needed to be cleaned off. That's when we discovered that it wasn't peanut butter, but it was vomit. In between unwrapping her gifts, she had thrown up on the back of the couch, and just continued unwrapping gifts. Apparently, no one had noticed and she hadn't said anything.

So I took her upstairs to get her cleaned up while one of the kids grabbed towels to protect the couch in case of future problems, and Daddy cleaned up the couch. While we were upstairs she said to me, "Throwing up on Christmas is stupid."

We eventually made it through the rest of the presents and everyone seemed very happy. I'm sure Santa was very glad to hear of their gratitude.

The kids chose to have sandwiches and munchies for the rest of the day. It made for a very relaxing day for Dwight and I. We didn't spend the whole day cooking. I missed it ... oh, wait, no, I really didn't. :)

Overall it's just been a wonderful day with the munchkins! I feel so blessed to have such wonderful children.

I hope that you too are enjoying a very blessed Christmas and that wherever in the world you are this night that you are enjoying this season. I hope that in the busy-ness of the season that you have found a few moments to think of Him. I know not all believe, but I know without a doubt that thousands of years ago the prophesied messiah was born to a humble mother and father in a lowly manger. I cannot imagine being his mother. I cannot imagine what it must have been like to watch his life. I wonder how much Mary understood. But, I know without a doubt that I have a Savior who loves me, and who loves you. I know that the greatest gift I have been given has come because of Him. This I know. In your quietest moments, I hope you know these things too.

Merry Christmas!

Wednesday, December 15, 2010

Medical Update

Ryan and I have been to a few doctors appointments recently and I thought I'd give you all an update.

Last week we went to see the Neurologist. On a bad day Ryan may have 10-20 seizures, but on a good day Ryan is down to 5-10 seizures. His seizures are not intensifying and he seems stable. With seizures meds there is a balance between given enough to stop the seizures and giving so much that Ryan becomes too sleepy to work on any of his skills. It really seems to be a fine line. Thus we have decided to not change his medicines for now. The Neurologist did order a blood check on his medicine levels and we should get that back in about a week.

We also went to see Ryan's Metabolic Geneticist. At our last visit, we discussed the possibility of Ryan having mitochondrial disease and agreed to do a trial of co-factors. Co-factors consist of CoQ10, Alpha Lipoic Acid, Vitamin E, and various Vitamin B's. The definitive way to diagnose mitochondrial disease is by doing a muscle biopsy; however, that is very invasive and painful. The way they treat mitochondrial disease is with co-factors. Thus, if giving him co-factors for several months had created a significant improvement in skills then we'd want to look at the possibility of him having mitochondrial disease. Well, after several months trial, those who did not know he was taking them saw no significant jump in skills. It is pretty safe to assume that he does not have mitochondrial disease. There are a few other things that came to mind for Dr. Gibson as he pondered Ryan's case ... thyroid, zinc, amino acids, etc. So, we did some more blood work and we'll see what those blood tests show. I'll call next Monday to follow up on the test results.

While we were at Dr. Gibson's office, we met our new GI Specialist. You might remember that I have been very unsatisfied with the level of care from our current GI specialist. His office seems to always just recommend eliminating oral feedings. Well, I *love* this new GI Specialist. She was wonderful! I finally feel like his team is complete! I always found myself saying, "We have a great team of doctors, except..." But, now I can just say, "We have a great team of doctors!" She is fully supportive of oral feedings for Ryan and is also supportive of adding more real food (ie less Neocate) to Ryan's diet, even if it's through his tube. She does not want to "artificially fatten him." I felt like she addressed the concerns I had with the chronic constipation with something that actually makes sense ... give more real food and less of the offending Neocate. She was not overly concerned about his weight loss, but would like me to work with her Nutritionist to add more calories into his diet. I especially liked that she spent time getting to know Ryan and our family, and that she even talked to Ryan. She treated him like a real person.

Today we went to visit Ryan's Ophthalmologist again. Dr. Cohen tells me that his eyes continue to improve. I love hearing good news from a doctor! He is fixing and following faster than last month. :) And, his eyes are focusing better than before. We are going to get him new glasses again as his prescription and head size has changed. We'll see if he'll wear the new pair at all. Dr. Cohen says it's not a big problem if he won't. We will go back in 3 months for a follow up visit & to see if it's time yet for surgery. We want to find the perfect time for surgery so that we can have optimum results.

On the therapy front, we have missed a lot of therapy appointments this month due to sniffles and fevers. We had a good therapy appointment today, but Ryan fussed a lot. He continues to work on prop sitting and rolling, and strengthening his arms, as well as communicating through signs. His oral feeding is going well although he continues to nurse the food off the spoon instead of taking bites. Krista, our speech therapist is coming over this week & I need to remember to mention to her that recently I've noticed that he's started to "scatter." I think that's the technical term. He's letting food just sit in his mouth again.

As for my medical stuff, I'm supposed to be working on scheduling biopsies of my full gi tract. I guess it just doesn't sound like much fun & I've been putting it off. I will call in the morning to see if I can get it scheduled. I am scheduled for my 3 month testing at MD Anderson in March. And, I'm seeing a new dentist next week to have all my old fillings replaced. Yuck. I think I'd rather have a biopsy than go see a dentist. Warped, huh?

I think I've covered it all. Plus, Johnathon is telling me all about his cooking class, David is asking for a turn on the computer, Jacob needs help with homework, Deborah wants me to read her a book in Spanish, Ryan is babbling, and I suppose I better go before I go insane trying to multitask. Merry Christmas ya'll!

Sunday, December 12, 2010

To My Midwestern Friends and Family

I'm torn between saying, "I'm so sorry" and "Neener Neener". {{giggle giggle}} As I enjoy our 60 to mid 70's during the day and freeze when our temperatures drop into the 40's, I will be thinking of you and hoping that each of you enjoy your white Christmas.

In all seriousness though, please be careful, stay warm and safe!

Silly Me

Everyone has their favorite brand of jeans, right? Mine has been Gap for a long time. I really loved their Loose Fit jeans in the 90's but they changed their styles & fit some time ago. I have tried trading brands, but haven't found a new favorite. So, I've been loyal to Gap.

I haven't lost the "baby weight" since having Ryan. I've even gained a couple of extra pounds. Ouch. Those extra pounds have meant having to wear jeans 2 sizes larger than my prior jeans. Ouch.

If you know me, you know this really pains me. But now that I'm feeling better I've been working out and eating healthier. Well, it's starting to pay off! Whewhoo! Friday I put on a pair of jeans in a size smaller and they fit very comfortably. Since they are a dark wash, I thought, "Hmmm... maybe I might be able to fit into my old size." And, they fit. A little snug, but they fit.

And, then you know what I thought? "I wonder why Gap is cutting their jeans bigger now?"

Silly me.

Wednesday, December 8, 2010

Johnathon's Nativity

Johnathon has a great Cub Scout Den Leader. Ida Ewing is one of those rare gems who does something super fun and creative each week. Johnathon is always excited to attend and I always look forward to seeing what activity she did.

This week she sent the mom's an email asking for some help with supplies. It seemed she might be planning to make gingerbread houses. Instead she did something even better. Check it out:


Can you see the sheep are made from large marshmallows and black licorice? Joseph & Mary are in the stable? Of course, that's baby Jesus lying in the manger. There's a donkey made from snickers & tootsie rolls & black icing. And a shepherd with a cane. Isn't that clever?


Johnathon was so proud of it and had such a great time! Thanks, Sister Ewing for being so awesome (and patient)!

Monday, December 6, 2010

My friend Lucy taught a great lesson on Sunday and so many great comments were made. It made me think about a quote I wrote down a few months ago. It's from Time Magazine. "Busyness - The constant distraction from difficult realities."

Deborah's First Day of School

It's not really school. It's actually speech therapy, but she is attending at a school. Thus, she's fully convinced that she's going to school. "To finally get to go inside!" At first she wanted to know if it was going to be Jacob's school or Jessica's school. When I explained that it was neither Jacob or Jessica's, I was worried that she'd be very disappointed. However, she became really excited about having her very own school.

I thought you might enjoy seeing a picture of her. I actually took about 20 pictures and this was the best one. I realize that it's slightly out of focus. I just could not get the little lady to stand still. She was so excited to go to "her" school!
I wish this type of enthusiasm lasted forever about school! Don't you?

Saturday, December 4, 2010

Another good quote...


"Most folks are about
as happy as
they make up
their minds to be."

~ Abraham Lincoln

Friday, December 3, 2010

I'm feeling much better tonight. Truth of it is that I felt much better immediately after blogging today. Things are tough sometimes and it's hard, but I can't imagine my life without Ryan.

Several really great things have happened today...
  • I had a great workout ... a super sweaty, super good workout. One that I will really feel tomorrow. I love that feeling!
  • I had the pleasure of a long conversation with a really good friend today.
  • I had a super long, uninterrupted fun conversation with my sweetheart. (Don't forget I have 6 kids. An uninterrupted conversation is pretty rare.)
  • I was able to deliver a van load of wrapped presents & I didn't spend a dime on the presents or even wrap a single present. Cool, right?
  • I spent almost 3 hours with a whole bunch of my favorite people tonight at a Christmas Party! It was super fun! I talked a little bit of "shop" with one friend, laughed with friends, caught up with some friends, and made a few plans with others. Best of all I picked up some more Almond Rocca for my family. ;)
I hope some good things happened in your day today. I'm off to get some sleep. Merry Christmas ya'll!

Wednesday, December 1, 2010

This is not what I had imagined...

When I was a little girl, I definitely had an idea of what it would be like to be a grown up. We all do, don't we?

I couldn't wait to grow up. I don't really remember a time when I couldn't wait to be older and able to do more things. It wasn't that I wanted out of my parents house or out of my town, like some kids do. It wasn't that I dreamed of getting married or being a mom, like some girls do. It was that I wanted to work in an office, travel to lots of places, attend meetings, organize events, own my own company.

It wasn't a vague perception. It was a definite idea. That probably doesn't surprise you, if you know me.

Well, tonight as I was picking up the Christmas ornaments off the piano bench and putting them back on the Christmas tree (again), it occurred to me that I am a grown up. Yup. I really am a grown up. And, this is not what I had in mind.

It's better.

Much better.

I have worked in an office, traveled to lots of places, attended plenty of meetings, organized many events, and even owned my own company, but this grown up thing is far better than I had imagined.

I am so thankful that God does not just bless us with what WE want, but stretches us and gives us blessings so that we can enjoy greater happiness than we can imagine!

Monday, November 29, 2010

The group that provides Ryan's therapies, Brighton Center, is hosting their annual Children's Holiday Party on Tuesday, 12/7 from 6-9pm & THEY NEED VOLUNTEERS to help serve food, seat families, & pass out gifts! It's a great way to share the Holiday Spirit with the many disabled children that Brighton serves & their families!

If you'd be interested in helping out, please e-mail my friend, Shae Freeman-Hicks at
sfreeman-hicks@BrightonSA.org!

THANK YOU!

Sunday, November 21, 2010

Yesterday I did a huge, much overdue shopping trip. I am not very good at rotating the stuff we store and so we had been trying to use up some of our food storage to make sure we wouldn't just waste it. Yesterday was the restocking day.

I'm thankful we have money for the things which we need. In our family I am the person responsible for our money though and so I feel a great deal of personal responsibility to make our money go as far as possible. With 6 kids, it just never seems to go as far as it should, especially when it comes to groceries. And teens. Seriously. How can a thin young man eat so much food in so little time and then still complain of being hungry????

Anyway...

While I was at the grocery store, there was the cutest toddler in a stroller. His mother was tickling him while waiting in line. He had an infectious laugh. Everyone around them was watching and smiling. She'd tickle him and he'd laugh. Over and over again. It was so cute!

But for a moment, I honestly felt a little sad watching the interaction. Ryan doesn't react that way to tickling most of the time. Then I remembered the sweetness and the pure joy I feel when he just laughs out of the blue. I don't know that I ever experienced any greater joy hearing any other child laugh. Another example of the tender mercies of the Lord.

And, I just have to share one other cute moment with you...

This morning while I was getting Ryan up for the day, Deborah came into his room. She climbed into his wheelchair, closed her eyes and said, "I'm blind. I can't see." I think she might have been trying to empathize with him. So I suggested one day we could put a blind fold on her and she could "see Ryan's toys with only her hands like Ryan does." She thought that would be a great idea. Then she promptly climbed out of his wheelchair and went about getting ready for church. I didn't realize she was even aware of him being blind. How naive of me. She's a very smart young lady.

Well, that's it for today. I hope you all enjoy a beautiful Sabbath day! I hear some of you are starting to enjoy the blessings of winter while we are still in the upper 70's for the next few days. Stay safe wherever you.

Sunday, November 7, 2010

Too funny...

After listening to Deborah for 20 minutes I grabbed the camera and video taped the following...

video

Friday, November 5, 2010

A Big Sigh of Relief

I finally received the call. And, the news is good.

Last Thursday, David had a bluish bump removed from his hip. It wasn't a mole and it had some pain associated with it. The dermatologist really had no idea what it was and so he needed to biopsy it. He thought it might be a blue nevis or a glomus tumor.

After researching it a bit, it really didn't look like a blue nevis, and a glomus tumor didn't seem like a very good option. Too many associations with cancer. I thought I had put it out of my mind and determined not to worry about it.

Then the call came. My neighbor was visiting and so I couldn't answer the call. The message from the nurse just said, "Mrs Mann, we need you to call us back." Oh, yikes. So, as soon as I could clear the kids from the room I returned the call unsure of what I would hear.

Isabel, the nurse, hurried through the polite conversation and said, "Mrs Mann we received the biopsy results. It is a pigmented benign cyst."

Then I realized that my heart was racing, my palms were sweating and I was essentially holding my breath bracing for another bad news moment. I heard myself sign an audible big sigh of relief. I'm sure Isabel shared my joy since she was the one who called me with each of my prior biopsy reports. I'm sure she was also relieved not to have to deliver bad news.

Such relief... oh, thank heavens!

Thursday, November 4, 2010

Tears of Graditude

Today I was going through some papers and found an envelope. I cried a few tears as I remembered the day I scribbled the times on the envelope. Tears of gratitude.

I remember sitting at my desk watching helplessly as Ryan kept seizing over and over. 16 times in 10 minutes. (This must have been one of the early recordings because it increased to 60-70 times in 20 minutes.) I really didn't even know then that the odd movements were seizures. I just knew that something wasn't right. My heart ached. Each of the recorded times represents a myoclonic seizure. The "choking" incident above I now know as a general seizure.

So, why the tears of gratitude? Well, thanks to an unknown number of people Ryan has medicines that do a fairly good job of controlling the seizures. They're not perfect, but we have less than a dozen a day now.

Have you ever thought about how many people have sacrificed to go to school to help develop the drugs or the medical technologies that help to treat the conditions that you or your loved ones deal with? I frequently think of the sacrifices that our doctors and their families have made to have the knowledge they have, but I haven't really spent much time before thinking of the countless people who have worked on the medicines and the technologies that help so much. But today I feel thankful for them.

A Conversation with Jessica

I had the following conversation with Jessica this morning on the way home from seminary:

Me: I like Taco Cabana's breakfast burritos.
Jessica: Yea, they're pretty good.
Me: I thought you didn't like eggs?
Jessica: I just prefer chicken to pre-chicken.

Pre-chicken? Oh my, oh my. She's definitely Dwight's daughter. ;)

Wednesday, November 3, 2010

Is it innate?

What is it about a pile of leaves that attracts children? Is there an inborn desire that forces them to run and throw themselves into even the smallest pile of leaves?


Tonight I took Johnathon and Deborah with me to a store. Just outside the store was a small pile of leaves. I probably wouldn't have even noticed them if it hadn't been for the way Deborah darted from my hand bee lining directly to the pile and started joyfully jumping. Johnathon quickly joined her and I stood in amazement wondering where they even got the idea.

I grew up in Indiana. We always had an abundance of leaves. I can remember raking huge piles of leaves. Of course, the best part was jumping on top of the pile when the work was done. But, my 4 year old has never seen us rake leaves. I don't remember reading any books about it with her and I don't recall Blue jumping in any leaf piles. Hmmm.... perhaps it's an innate ability to recognize ways to find joy.

Wouldn't that be great? Wouldn't it be great if we all had an ability to know just what would give us great joy? Just to know instinctively. Maybe you do. Or maybe, like me, you've had to work a little harder to figure out what brings you joy. Maybe you've had to experience some sorrow in order to realize that you have joy, or to more easily recognize the joy.

I don't know that a few years ago I would have stopped to appreciate the joy that they felt tonight as they jumped in the leaves. I might have just hurried them along to finish the shopping. I'm glad I could watch and share in their joy.

What gives you joy?
I just read an article by Dr. S. Michael Wilcox. Perhaps you have heard of him. I was going to just include a link to the article, but then I thought that ultimately I will be putting this blog into a book form for my children and the link will be lost. So, I hope that Doctor Wilcox does not mind that I have chosen to copy and paste the text here to share with you.

I think this article is inspiring. I love to travel. We do not travel as often as I'd like, due to financial restrictions. However, we can still explore the world through learning. Aren't we lucky to live in an age where we have such easy access to the world around us?

Passport Family Portraits, Written by Dr. S. Michael Wilcox
It was a Saturday afternoon, the mail lay waiting on the kitchen counter. I saw the slightly thicker envelope topping the pile addressed to my daughter-in law. When she came in the door my wife casually said to her, “There’s a letter for you, Carolyn, you may want to open it.” She looked at it and read the return address—U.S. Passport Office….. Picking it up somewhat breathlessly she broke the seal. Holding her first passport in both hands she said with almost reverent awe, but with a voice bursting with excitement and tinged with a measure of joyful disbelief: “I have a passport! I have a passport!”

For such moments I live. We travel for many reasons, but prime among them is the opportunity to watch our children thrive in the atmosphere of another country, among other peoples. Most people who travel carry their cameras, snapping shots with each new locality. We too bring our digital memory cards, but the most precious stored images are those held in our minds not those captured in the electronic world of gigabytes. They are the memories, savored and relived when the tour is long past of connections made between those I love and that broad, wide, wonderful world of which we are all citizens. These are moments that can never be captured by the limited focus of a lens.

We took our children on a journey from Palmyra to Winter Quarters. At that critical stop in Carthage my nine year old son shared in the collective memory of that sultry June day in 1844; heard as if he had lived it, the hopeful sadness of “a poor wayfaring man of grief,” then the noises of the mob, the rush to the door, the gunshots, the final words, and the troubled silence of the summer rain on the grass below. I found him a few moments later outside lost in the poignancy of the moment, the love of Joseph forever sealed into his heart.

Perched on a cooler next to the driver’s seat in a bus in Guatemala another son, age 12, listened to the unceasing joyful banter of our driver Sergio. It was all in Spanish, of course, and our son couldn’t understand a word, but the feelings came through and a bond was created strengthened every day as the two became inseparable. He shared with him the colorful costumes of the Highland people, the farmers in their corn fields green with the summer rains and the women weaving by the lakeside. They saw the children peddling their tiny homemade crafts, smelled the tortillas warming on an outdoor grill, laughed at the antics of the spider monkeys—and my son’s spirit was enlivened. When we left, Sergio put his hand on his heart and patted it tenderly his dark eyes soft as he looked at my son and said, “Mckay, McKay. In here.” You can’t buy that kind of education for all the tuition in the world.

A few years later we walked with our daughter and son in law through the rainforest at Tikal whose pyramids wait hidden until that moment when the jungle clears and they tower above you in Mayan magnificence. Not one given to expressions of exhilaration or the use of the exclamation point my son in law stopped dead center in the trail looked up to the roof comb scratching the sky and said, “You’ve got to be kidding me!!!!!!” It was a six exclamation point sentence and we all laughed in the delighted uninhibited emotion of his wonder—the most excitement I had ever seen generated in this man of controlled and guarded enthusiasm.

There was that moment in the Louvre with my oldest daughter who took an Art History in college. She loved the painting by the Dutch master De La Tour titled “Christ with St Joseph in the Carpenter’s Shop.” De La Tour was a master of the contrast of light and dark and you can almost feel the warmth of the candle held by Jesus, it’s glow shining through his closed cupping fingers. We were running out of time and had not found this one painting she most wanted to see. We separated to broaden our search. At last, rounding a corner, there was our daughter transfixed before the painting tears flowing from her eyes. We said nothing. The silence confirming the truths imparted. And in my memory will always breathe that moment in the Sistine Chapel as my wife looked up to the central panel of Michelangelo’s ceiling. There was the Father cradling the yet uncreated Eve in the protective reach of his arm, the other extended in life-bestowing gift towards Adam who received the offered sacrament in trust and adoration. My wife’s head bent full back was unaware of the tears dropping down the side of her face wetting her hair and ears or the soft murmur of her voice.

There were the Chinese kites soaring above the deck of the ship bright against the cliffs of the Yangtze River and the soaking downpour on the Li as we vainly but laughingly ran for cover. Reading Wordsworth’s “Tintern Abbey” in the ruins that inspired it, listening to my father in law recount the Christmas story in Bethlehem, counting tropical fish on the Great Barrier Reef, walking in Red Square surrounded by echoes of the fading Cold War, an evening meal in a sidewalk cafĂ© off the Piazza Navona in Rome, a son doing magic tricks with the children in front of the Pyramids, all rest comfortably in the holding places of my heart. It doesn’t seem to matter where or how far one travels, sharing it with family sanctions the recollections and embeds the feelings deep within.

The story is told of a guard at the Rijkmuseum in Amsterdam who was standing in his assignment next to Rembrandt’s “The Night Watch,” the museum’s most beloved treasure. He heard a visiting tourist comment, “I don’t see what’s so great about that.” “Ah,” replied the guard, “But don’t you wish you could.”

There is nothing quite as satisfying or so completely heart-healing as when your own child opens their eyes and sees. Then the earth is created anew, man’s dignity reborn, and the world seems a friendlier, more welcoming place, where all are lifted by all. “I have a passport! I have a passport!” But not one that simply allows us to visit other countries, but a passport to experiences that leave us and our families touched by the universal goodness scattered in a hundred thousand places across this earth—from pole to pole.

Are you inspired?

If I could take my kids anywhere, I would love to take them on a history tour. Wouldn't it be fun to learn history in the places where it happened? Around the world or even just around the states. Of course, Jessica would probably love to go on an art history tour. And, well, we'd need to throw in a little diving for Dwight. ;)

Where would you go if you could travel?

Sunday, October 31, 2010

Saturday, October 30, 2010

Halloween

There's a special excitement in the air at my house today. Maybe I should call it ... chaos. Chaos might be the better word. My kids are SO excited about Halloween. They love dressing up and have been planning for this night since last 10.31. It's interesting to hear the ideas they go through, and how many times they are absolutely certain they have decided on a costume. Yet, tonight all of them are wearing things that were just decided within the last 2 weeks or so.

Unfortunately, Daddy won't be available to do the makeup or to help with costumes. That puts the burden on the kids cause everyone knows that I'm really not into this holiday at all. I am a pretty good sport about it, but I could skip it altogether and be very content. Maybe buy a few new good books, spend the evening reading a mystery or watching a suspenseful movie. (Note that I did not say a thriller.)

It's really not the candy part that bothers me. I probably like the candy as much, if not more, than my children. I'm truly a candy fanatic. I just know that it's not that good for me and so I exercise a lot of self control.

Anyway ... I must get back to work. We have to go to the store. David was planning to be a transformer, but due to some unexpected stitches in his hip he can't bend over well. Thus, I'm off to buy a few last minute items. I'll be sure to post pictures later.

I hope you all enjoy your Halloween festivities, whatever they may be. Be safe!

Monday, October 25, 2010

I likened the last mammogram's squishing effect to making pancakes. Today -- crepes.

Ouch.

Thursday, October 21, 2010

The results are in, and...

All of the hepatology tests were negative. The bone marrow biopsies were both negative. Most of the blood work came back within normal range. The few things that were outside of normal range are not worrisome.

As for the PET scan, there were a few tiny areas that lit up on the back of my lower neck and on my upper right thigh. They were all very small. The mammogram also found a small lump in my breast.

So moving forward, the plan is to stop the maintenance treatments. This doctor thinks it serves no valuable purpose. It is the same drug that we used in the first round, which wasn't entirely effective. Therefore, this doctor thinks that it won't prevent the lymphoma activity completely, but could mask the lymphoma on tests.

Additionally, he still wants me to have a dermatology consult. He'd like the dermatologist to biopsy anything she thinks is suspicious. And, I'll see my Rheumatologist next week to determine if I'm having autoimmune issues, again.

All in all, the news is good. Thank you all for your prayers. I'm looking forward to not having treatments for a while.

And, now I'm off to color my hair ... Auburn. Sounds like a good fall color. :)

You know the ID bracelets they always put on patients at the hospital? Well, here at MD Anderson they even put your picture on your bracelet.

Would you rather...?

Good morning!
I'm still at MD Anderson. I'm waiting for a call from the doctor's office to determine what today's schedule will be. I was looking forward to sleeping in this morning, but was wide awake by 7.30. Oh, well. I suppose that's good for me, right?

So, let's get to the good stuff: today's "Would you rather...?" question.

Would you rather be trapped in an elevator with wet dogs or with three fat men with bad breath?

Hmmm... I think I'll have to go with the wet dogs. While they might really stink, they will eventually dry. Oh, but the question doesn't address whether they're cute dogs or friendly dogs or hyper dogs. Ummm... maybe it's been too long since I've smelled a wet dog. Oh, and they also do that shaking thing when their wet that sprays the water all over. I think I'll change my answer. I'm going to go with the 3 fat men. I usually have some good strong cinnamon gum in my purse. I'd just insist that everyone have a piece.

Of course, maybe their weight is the reason we're stuck to begin with ...

Have I ever told you about the time that the kids and I were stuck for a few minutes in an elevator?

We all jumped. Do you know how fun it is to jump in an elevator when it's going down? It's a weird sensation. You jump up as it's still moving down. So your down is further than your up. It's fun! So, I was the responsible (read fun) Mom riding the elevator with all my kids and we all jumped. When we landed, the elevator just stopped mid floors. We stood there for a few minutes looking at each other. Thankfully, it started moving about 2 minutes later. But, 2 minutes is a long time to be mid-floors in an elevator with 5 kids.

If you want to try an elevator jump, I'd recommend: (1) Give yourself at least 2 floors to go down. Like if you're on Floor 3 go to Floor 1, but in a pinch, you can do it across just one floor. (2) Remember you jump up when the elevator is moving down. It's not much fun the other way. (3) don't try it with other adults on the elevator. But, if you do, let me know how they respond. =D

Wednesday, October 20, 2010

PET Scan is Done

I arrived at 2.50 for my 3 pm PET scan. I had to go for 6 hours without eating. Since I had an appointment at 8 this morning, my last meal of eggs only was at 7.30 am. (You have to skip all sugars and carbohydrates prior to a PET scan. They said I could have any kind of eggs and some bacon. I just had eggs.)

I knew the appointment would take several hours. They break down the appointments here so that at 3 pm was my "PET Prep"; 3.30 was my "PET Injection & Localization" and 5 pm was my "PET Scan." Also, the prep literature had explained that they would give me an injection of radioactive sugar and then I would need to lie still for 60-90 minutes. I also knew the scan would take about 30 minutes. So, I figured I would be done by 6.

Unfortunately, they were running almost 2 hours behind schedule. I didn't finish until about 8 pm and I felt pretty lousy by the time we finished. The test was easy. I was just hungry and tired. And, today I took the shuttle so I had to wait an additional 25 minutes for a ride back to the hotel.

But, really the ride was one of the best parts of my day. The driver was so nice. He introduced himself to each of us as we got in the van and then called us by name the rest of the time. I was the 2nd person picked up and we picked up another 7 people. Somehow that driver made all of us feel so comfortable that we were chatting with each other. One of the women was being dropped off at the hospital to see her husband who is in the Intensive Care Unit (ICU). Another from Tennessee has a rare form of cancer in his lower abdomen. They are hoping to shrink his tumor so that they can do surgery. He's on his 5th round of chemo and had just received his new dosage. A lady from Arizona was being treated for breast cancer. A man from Alabama was there with his mother. She's been fighting colon cancer for 5 years. The drs in Alabama wanted to send her to hospice. The drs here have given her hope for another few years.

So what do a van full of cancer patients & their support people talk about? Food. We discussed all the various options for food. We laughed and talked as if we had been friends for years.

That's one of the amazing things here. The place is full of people who are going through tough times, but you know I haven't seen even one person act grumpy or impatient or rude. Everyone is really polite and friendly. I wish all these people were not going through tough times, but I love that they are, as one nurse said, "the strongest of the strong." They give me courage and strength.

I'm off to get some sleep now. I'm looking forward to sleeping in tomorrow.

Oh, and no, I do not have any results yet. I should hear from the doctor tomorrow as to whether they want to do the biopsy of the lymph node on my neck. He is also still trying to get me a Hepatologist consult for this week. I'll keep you posted.
I'm back from the neck ultrasound. The lump on the back of my neck is an enlarged lymph node. They also found several other enlarged lymph nodes. (I was surprised by that since no one has felt any others.) After taking lots of pictures, the u/s tech paged the doctor when she was done. He wants the PET scan done before we do the biopsy.

So, I have a little of down time till my PET scan. I'm going to work on the employment resource surveys we recently did at church. I volunteered to do the data entry on all of them. I enjoy typing. I find it very relaxing. I think I'll finish them all today and it'll be nice to have all those network contacts available.

I also may do some reading, and take a nap. Hope you all are doing well!

Would you rather...?

One of my amazing friends, Sarah, created a super fun bag for me the last week when I came to Houston. She included a list of "Would you rather..." questions. So, in honor of my list, I thought I'd share them with you. Just one each day for a while.

So today's question...

Would you rather drink 1 gallon of ketchup or 1 gallon of mustard?

Hmmm.... this one is easy. Definitely mustard. I love mustard, plain old fashioned French's yellow mustard. I don't really like it on stuff. Just plain. I'm not sure I'd love an entire gallon. I usually only eat a couple of drops.

What about you? I can't wait to hear what you'd rather do.

Tuesday, October 19, 2010

Back to MD Anderson

Tomorrow morning I have appointments at MD Anderson again. I'll be having an ultrasound guided biopsy of a lump that is on my neck. Ouch. And, then I'll also be having a PET scan. The insurance company finally approved it. I suspect it will be a long day tomorrow.

I drove down by myself today. I listened to John Bytheway for most of the trip. He is a really funny speaker. I tried to find a link where you could listen to some of him. I think you might like this one. It's a little bit more serious than some of his talks, but it's still a really good talk.

In one of the talks, he likened our life here on earth to a movie. That caught my attention for a couple of reasons. John said he's often thought that the "judgment" to take place after this earth life would be that we will all watch each other's movies.

So, here you are on earth, making your movie. Everything you do is included in the movie. Now, if you're like me, you might have a few thoughts of "oh, crud, I don't want everyone to see every thing that I've ever done in my life." I've had a few stupid moments.

But, here's the great part... the movie can be edited.

Just like all movies, we can cut out any scenes we don't want others to see. How? Repentance. Isn't that a great way to think of repentance? It's just editing your movie.

Here's the best part in my opinion ... it can happen on a moment by moment basis. I don't have to wait till I finish my movie to edit it. I can edit out clips from today or from a year ago. Or even 20.

Isn't it great to know that we can be completely clean all the time. We simply don't have to wait. I'm really thankful for repentance. I make mistakes every day. I'm so glad I can be forgiven from them.

Friday, October 15, 2010

PET Scan Postponed

The insurance company has still not approved the PET scan. They haven't denied it. They just haven't approved it. So, it looks like I'm done with testing until next Tuesday. I'm looking forward to seeing my kids tonight. I have never been away from Ryan. I miss them all!

Thursday, October 14, 2010

Today's Testing Fun

This morning I went in for an echocardiogram. No big deal at all.

Then it was time for the dreaded bilateral bone marrow biopsy. Thankfully, I had scheduled it with sedation. The lady who set up my IV, Patti, was so amazing. She told me the coolest story of lots of good people who supported a man diagnosed with Leukemia. I love meeting these people and hearing their stories. It's a little overwhelming though at times to think that every person on the MD Anderson campus (which is huge) has a story. Maybe they have cancer. Maybe they're a cancer survivor. Maybe they are working there. Maybe they have lost someone to cancer. But they all have a story. If you want to meet courageous people, this seems to be the place. If you want to meet, caring people, this seems to be the place.

I'd love to hear more of their stories. But, I've digressed.

Patti set up my IV and assured me that they were going to give me the "good stuff." She promised I wouldn't feel anything and I wouldn't remember anything. WHEWHOO!

Patti was right. I didn't feel the test, but now that I'm sitting on a very firm mattress, I am feeling far too much! Ouch.

I'm not sure how I'm going to sleep tonight. Both back sides are bruised and hurting and I have a catheter hanging off my chest. (It's in my medi-port so that I won't have to get stuck again tomorrow for the PET scan.) Hopefully, I'll be able to get a little sleep.

Yikes.

Today is a bilateral bone marrow biopsy. Yuck. Not just one. Two. Both sides. This is not going to be fun.

Wednesday, October 13, 2010

Today was a day off from testing and all cancer related things.


Michelle and I went to the Houston Temple, which is beautiful, of course. If you're not familiar with the Temple, you can click here and watch a short video that tells why Mormons build temples. Unfortunately, the video doesn't share the best part of the Temple with you. The best part is just the peace one feels when they attend the Temple. They are the most beautiful places and very quiet. I feel closer to God there than any other place on earth. If you haven't been to a LDS temple before and you're ever in an area where they are doing an "open house" at the Temple, please go. I think you'll enjoy it.

Michelle and I are staying at her sister-in-law's house. Isn't that nice? She doesn't even know me and yet she offered to let us stay there. The best part of the story though is really about Michelle's husband, Suresh. He voluntarily took the week off work so that he could be with their kids ... so that Michelle could be with me. Isn't that amazing?

I really am very blessed.

Tuesday, October 12, 2010

More Tests

I had more tests today. Yesterday they took 12 vials of blood, did an EKG and a chest x ray. Today they did a Mammogram, a CT scan with contrast. Contrast everywhere. Not pleasant. 2 big bottles of barium. Berry flavored barium. But, that wasn't the worst part of the barium. They also did a barium enema. And, the funny little man who had the privilege of doing it, kept snapping his gloves as I was lying down on the scanners bed. Nice. Since he was snapping his gloves, I gave him a hard time about what he must have done to get stuck with that job. I'm sure not all patients are as pleasant as me. haha.

Jana left today to go home. It was so nice of her to drive me down here and to stay with me. She is a neat lady and I really felt privileged to spend so much time with her. Hopefully, you have (at least) one of those friends who just by their example reminds you of all the good things in life, all the really worthwhile things in life. I'm lucky that I have several of those friends. I really am very blessed to have so many amazing people in my life.

Another one of my kind, amazing friends came down from San Antonio to be with me. Michelle went with me for the CT scan. I volunteered to let her go in for the barium enema. I can't believe she didn't take me up on the offer. ;)

Oh, and regarding the mammogram. One word: pancake.

Monday, October 11, 2010

MD Anderson

On Sunday, my friend Jana and I came to Houston. This morning I had an appointment with a Lymphoma Specialist at MD Anderson. If you're not familiar with MD Anderson, I'll just summarize it by telling you they are ranked #1 in treating cancer. The have an amazing reputation, and I can tell you that it is well deserved.

Today I first met with a lady for registration. Then a volunteer came over to explain just what would happen. He was really knowledgeable and kind. I then reviewed my history with a nurse. She found it unbelievable that I had not had a PET scan or at least a follow up CT scan. She was really pretty and she reminded me of one of the young women that was in my class when I lived in Plano, Texas.

When the nurse left the room, she told me that the research assistant would come and then I could wait in the waiting room for the Dr to be ready. However, about 1 minute later, the doctor came in. He had reviewed all my records and made notes on them. (Isn't that amazing?)

He was also surprised that I had not had a PET scan or a follow up CT scan. He was able to feel the lump on my neck and also saw a couple of other spots on my back that may be new "lesions." He said he would agree with the diagnosis of marginal lymphoma and would originally have put it at stage 4.

He ordered all new scans and some new tests as well. We discussed the "what if's." If it's not the Lymphoma that is causing the symptoms, it could be autoimmune related. If it is the Lymphoma, it could be in "partial remission", meaning that it is essentially just waking up, or it could be active. It could also be another type of cancer.

To determine what's going on, he's ordered a bunch of tests. Blood work, EKG, Echocardiogram, Chest Xrays, CT scans, mammogram, neck biopsy, bone marrow biopsy, and PET Scan. He'd also like a dermatology, hepatalogy, and gastroenterology consult.

We discussed briefly that he will tolerate 1, maybe 2 relapses before he refers me for a stem cell transplant. Also, they have a clinical trial that is opening in November that is specifically for recurring marginal lymphoma.

Obviously, it doesn't make sense to spend a lot of time dealing with the what if's. It's much better to just get the information we need. So, let the testing begin!

Sunday, October 10, 2010

It's In The Valleys I Grow

My Dad shared this poem with me. I think it's beautiful!

Sometimes life seems hard to bear,
Full of sorrow, trouble and woe
It's then I have to remember
That it's in the valleys I grow.

If I always stayed on the mountain top
And never experienced pain,
I would never appreciate God's love
And would be living in vain.

I have so much to learn
And my growth is very slow,
Sometimes I need the mountain tops,
But it's in the valleys I grow.

I do not always understand
Why things happen as they do,
But I am very sure of one thing,
My Lord will see me through.

My little valleys are nothing
When I picture Christ on the cross
He went through the valley of death;
His victory was Satan's loss.

Forgive me Lord, for complaining
When I'm feeling so very low.
Just give me a gentle reminder
That it's in the valleys I grow.

Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.

Thank you for valleys, Lord
For this one thing I know
The mountain tops are glorious
But it's in the valleys I grow!

Friday, October 8, 2010

Best Invention Ever!

Truly, the Best. Invention. EVER!! It even extends to 21" AND has a pocket clip. I can take it everywhere. No more searching for a sharp corner or a willing back scratcher. Thanks, Tami!!

Thursday, October 7, 2010

I found this note written on an envelope in my room. I'm sure I made it from a talk that I heard, but I don't remember who the speaker was or when it was made. I think it's wise counsel and don't want to forget it.

"Pray for the ability to see your children's needs before they become big problems. Ask for specific insight on each child's concerns. Ask for ways to guide them in the paths of truth and righteousness. Ask for methods to help your children fulfill their destiny and He will show the way."

Monday, October 4, 2010

In honor of...

National Taco Day!

Did you know that today is National Taco Day? It is.

To honor this special occasion we had tacos for dinner, of course. What else would you have on National Taco Day?

David also wrote this very special little poem, and repeated it dozens and dozens of times during dinner.

There once was a boy named Paco,
And for each and every meal
He ate a taco.
'Til one day,
He went crazy,
He went home to be lazy,
And that was
The last of poor Paco.

Tuesday, September 28, 2010

Please tell me why.

I don't always agree with everything or see the necessity for things, but I can usually see why others might think it's a good idea. But, I went shopping for a homecoming dress with Jessica the other day. While I was waiting, I saw this pretty black dress. I don't usually shop at that particular store, but I thought, "Oh, I'll try it on."

After selecting my size, I went into the dressing room and slipped the dress on. It was a very pretty dress ... but ... wait ... what? what is this? What???


Can someone PLEASE explain to me WHAT this is? It was almost like a pocket, but it went all the way through. It laid flat, unless I took a step and then it did this weir puckering thing where you could see through to the other side. Is it a hand warmer?

I know I'm not a fasionista, but seriously, what's up with this?

Monday, September 27, 2010

The Perfect Fall Day


Today was it! The perfect fall day. The air was cool and crisp; yet, the sun was shining brightly. It was perfect! David, Deborah, Johnathon & I took advantage of the day by going to the playground. Actually 2 playgrounds. :)

Wednesday, September 22, 2010

The Promised Update

The air conditioner was fixed just in time for me to shower and leave for my Oncologist appointment. So, the promised update...

The Cancer is once again behaving itself poorly and I'm symptomatic. The good news is that Friday's scheduled maintenance treatment has been put on hold. Instead I am headed to MD Anderson in Houston in just a couple of weeks to meet with a Doctor who specializes in my specific type of Lymphoma. It seems they will re-biopsy and re-scan me from head to toe. I don't really have much more information to share with you.

There have been several neat experiences that have led to this event of scheduling the appointment at MD Anderson. Although I have seen the Lord's hand in my life so many, many times, I still stand in awe each and every time. I amazed at the symphony of events that have recently taken place and at the faithfulness of each person who has played their part so beautifully, responding to quiet whispers with perfect timing. I thank you for your prayers and for your faithfulness! Keep the faith!
An update is past due. I know. I will get to one soon. I'm on my way to the Oncologist and will give you a report when I get home. I'm really not ignoring the blog. It's just an unusually busy week. In addition to the usual craziness, I'm also in the process of working my way through two 8-inch stacks of paper work, trying to ignore another 4-inch stack of paper work, and preparing a talk for Sunday's church meeting. I have a bunch of pictures that I want to share with you, a ton of thoughts, a few questions, one movie moment, a humbling moment, and a few sweet experiences that I'd love to share with you.

And, all very soon. First, let me get my kids and myself dressed for the day (3 down only 4 to go), the air conditioner fixed, and home from my Oncologist appointment. It won't be long.

Monday, September 20, 2010

Today is Deborah's 4th birthday.
I said, "How old are you?"
She said, "Almost 5!"

Saturday, September 18, 2010

You have to take the best
from whatever the situation is
and go on.
~Jimmy Buffett

Friday, September 17, 2010

Silly Girl


Deborah found this hat at Target today and wore it the whole time we were there, and made silly little faces as she looked at other shoppers. It's a good thing she's so dang cute!
Want to know what my all time favorite movie is? It's The Gnome Mobile.

Wanna know why?


Well, it's cause when I was a kid, I wanted to be a gnome. No kidding. I wanted to be a real live gnome. I thought it would be so cool! I could imagine myself sitting in school, and in church, and riding a puppy dog, and sitting on top of my grandpa's cap, or on my dad's shoulder. Yea. I really thought it'd be pretty great.

So even still when I see The Gnome Mobile (and yes, I have watched it again in the last year, and yes, I joyfully sing along with the songs) I still think it'd be pretty cool to be a gnome. But, anyway ... all this just to tell you that the other day I was on Facebook and I saw this picture of my cousins. I immediately loved it! It not only makes me happy because it's fun to see my cousins, but it also makes me happy because the man in the picture reminds me of one of the characters in The Gnome Mobile, which quite frankly might be one of the highest compliments I could pay to anyone.


"In the gnome mobile, in the gnome mobile. Rolling along in the gnome mobile. Oh, what a wonderful way to feel! Rolling along in the gnome mobile!"

Thursday, September 16, 2010

Jacob's First Day of School

Have you heard the news? After much consideration and prayer, we made the decision to have Jacob attended public school. In case you don't know, I've always home schooled (other than 1 semester of Kindergarten). We decided to do this because I've been just a little busy lately. Jacob has always wanted to attend school and we know that he will do well there. So, we decided that it made sense to let him go.

I don't know who was more nervous, me or Jacob. Oh, wait. Yes, I do. Me! Definitely, Me! I don't think 5 minutes went by from the time I left the school until I saw him get off the bus that I didn't think about him. I would have liked to have attended his classes with him for his first day, but I suppose that might have been a bit awkward for him.


I was quite happy to hear that things went well.

Wednesday, September 15, 2010

I am so tired today. I feel like I can barely keep my eyes open.

Tuesday, September 14, 2010

There are worse things than Cancer.

A few weeks ago I was talking with a good friend of mine. A wise friend of mine. She said, "There are worse things than Cancer." I've thought a lot about her statement.

I could quickly agree that many things are worse than my cancer. But then I thought of a sweet friend whose husband is battling cancer. I'm not sure that many things are worse than his cancer. And, I thought of another friend whose husband is battling cancer. Oh, what a tough battle. I started to think about other trials that my friends, family or I have faced.

Having a child with a terminal illness.
Loss of a home to a fire.
Being disowned by your family.
Being betrayed by a friend.
Being betrayed by a spouse.
Years of unemployment.
Physical abuse from a spouse.
Mental illness.
Emotional abuse from a loved one.
Having a child with special needs.
Losing a spouse.
Going through an unexpected divorce.
Watching a loved one struggle with an addiction.

What makes a trial hard? What makes some things feel so much harder than other things?

As I thought about the trials in my life, I tried to identify what has made some trials seem easier to bear than others. I wondered if it was the trial itself. Is it harder to survive Cancer than to survive sexual abuse? Is it harder to have a child with special needs than to ... well, you get the idea. But, then I started to think about what helps/helped me to survive the tough things in my life. And, what makes some things really hard.

That's when it hit me: *Secrets make things hard.*

At first I wondered if there is some kind of power that a secret has that makes it really hard, but then I realized, Hello. It's that when I'm keeping it a secret, I'm carrying the burden all by myself. But, when I share it, then others help me to bear the burden. When we bear one another's burdens, our burdens are made light.

At times it is not possible to blog about our struggles. At times our struggles are so personal that we cannot share them openly with friends or family. I think those are the struggles that are worse than Cancer.

I hope you are not there.

Neurologist Update

Today we went to visit Ryan's neurologist. It was nice to see Dr. Seals, as always, and it only took about 2 hours total. :)

We went with 2 primary concerns. First, Ryan is having at least 15 to 25 seizures each day. Second, I wanted to discuss getting a suctioning machine for Ryan.

The seizures have been steadily increasing. It is a constant struggle to keep his meds at the right level, especially since Ryan is still at the age when he's constantly growing (thankfully). It's also possible that the Texas heat is contributing to the increase in seizures. Unfortunately, the air conditioners at home do not seem to be able to beat the Texas heat and humidity. We're going to keep him on the same meds, but we're going increase his Lamictal over the next couple of weeks. Then we'll have his blood levels checked at the end of the month.

{{Ugh. I really dislike that we have to check his blood levels. The poor little guy is such a hard stick. I know we must do it to take good care of him, but it's heart wrenching to hold him while they dig for veins.}}

The other issue ... Ryan's choking. Ryan chokes daily. Multiple times each day. Most days he can clear it himself. We just help him set up and encourage him. However, about once ever 3 or 4 days, he has a severe choking episode that causes him to turn dark red ... or light grey. It's a horrible thing to watch. I feel so helpless watching. So inept. I live in fear of a day when he won't be able to clear it for himself. So, today I asked the doctor to write the orders for a suctioning machine.

That's when the doctor's visit become one of those moments.

Those moments. I've had a few of those moments during the past 2 years. Moments when you realized that life isn't what you thought it would be. Moments when you have to face reality.

One such moment was when we got Ryan's wheelchair. The reality was that Ryan really needed a wheelchair.

Another moment was when I first took Ryan to church in a wheelchair. The reality was confirmed. Ryan is disabled.

Another moment was when I first saw my port in the mirror. I really had cancer.

This is another one of those moments. We need a suctioning machine. The reality is that Ryan might not be able to clear his own saliva. It sucks (haha ... didn't really intend that pun, but oh, well ... haha). It really sucks that my sweet little Ryan struggles so much.

BUT ... on the bright side, I would be fit and well read if I worked as hard at my goals as Ryan works at everything he does. He is truly an inspiration. And, while it stinks to need a suctioning machine, I am very thankful that the technology exists, and I pray that we will never need it.

Saturday, September 11, 2010

Remembering 9/11

It's hard to believe that so many years have passed.

On that dreadful day, we lived in Allen, TX in a beautiful red brick home in a quiet suburban neighborhood. I was sitting on the couch folding clothes while watching a children's show with Jessica, Jacob and David. They were so little then. Jessica was 6. Jacob was 4 and David was almost 3 years old.

They interrupted the children's television show with the news that a plane had hit one of the World Trade Centers. At first it seemed to be an accident, but within moments there were confusing reports of other planes hitting other buildings. The pentagon included. I had a friend who worked in the Pentagon. His father worked there also. There was also a report of a plane going down in a field. It was all so confusing.

Then we watched on live tv as another plane came into view on the screen. I remember feeling so helpless as I realized the plane was headed for the towers. There was no doubt at this point that it was intentional. America was under attack.

I remember watching bodies dropping from high up and the sound of them landing on an awning. I remember the mass confusion on the ground.

For some reason, Dwight was home that day. His company had an office near there and I was so thankful that he was home. I woke Dwight up to see the news, but I was in such shock that it didn't even occur to me to have the kids go out of the room.

I remember how quiet the world seemed for a while. I was scared to take the kids out to the mall or to the parks. I remember watching the tv for hours as they reported on people looking for family members. I remember feeling so sad.

I wish it had never happened. I cannot imagine the sense of loss that so many families feel from such a senseless tragedy.

Did the perpetrators realize that Americans would become stronger because of their attack? Did they know that we would forever remember that day? Did they anticipate that it would awaken so many sleeping Americans to the need to protect our country, to fight for our freedoms, to pray, to be thankful, to honor one another?

I love the surge of American pride that followed, the surge of gratitude for those who keep us safe, and the surge of prayers that took place. I hope as we remember today that we still remember to pray, to be thankful and to be proud of righteous freedoms.

May God bless each and every one of us. May He watch over and protect those men and women worldwide who sacrifice so much so that we can enjoy so many things, and may their families feel His loving arms around them.

And, may each of us thank and honor them for their selfless service.

Friday, September 10, 2010

Seriously???

Enough with the scary experiences this week. I hesitate to even put this picture here, because I really don't ever want to ever see it again. But here it is...

Can you see it?

If you know me well, you may have some idea of how I'm feeling today. I'm trying to deal well with this, but it just feels like the proverbial straw.

Thursday, September 9, 2010

Creepy Experience

I went downstairs at 3 am to help Ryan because he was choking. When I was leaving his room, I heard this really creepy whisper-y voice saying "Mom", slowly, over and over. It didn't sound like *any* of my children. I couldn't even tell where the sound was coming from -- maybe inside the *locked* closet??

Then in the darkness, a hand touched my thigh. I almost peed my pants!

Deborah is lucky she didn't get hit out of pure reflex. What the heck was she doing downstairs at 3 am and why did her sweet little voice sound *SO* creepy?

Wednesday, August 25, 2010

Ryan's Little Ears

Ryan had tubes put in his ears today. He also had the Brainstem Auditory Evoked Response test done. Isn't that a scary sounding name for a hearing test?

The tubes were inserted without any problems. There was a little bit of mucousy stuff on the right side, but the left ear was completely clear.

As for the BAER test, well, it showed that he has hearing loss. He is 60/70 and the normal range is 35-40. He also has delayed processing. That didn't surprise me. But, I did feel surprised by the hearing loss. Thankfully, it's very treatable. In a few weeks we'll go for a hearing aide evaluation.

The other thing that was stated was that Ryan's overall brain waves were "odd." I have requested a copy of the EEG readout so that I can share it with Ryan's neurologist. It'll be interesting to hear what he has to say about it.

The really great thing about today was that Ryan had NO problems with the anesthesia. What a relief! And, now he's lying next to me in his Nap Nanny just chattering away. Geesh, I love this kid!

Tuesday, August 17, 2010

A Dream

I didn't want to wake up this morning. I was having such a great dream.

Dwight and I were in a large flat-style apartment. Deborah and Ryan were the only 2 children we had with us. I think Ryan was probably 7-9 years old and Deborah was probably 11-13 years old. Dwight and I were just waking up when we noticed Deborah and Ryan in the room with us. We quietly watched as Deborah continued to teach Ryan to walk.

A little later in the dream, we all walked behind Ryan as he walked into the chapel. No one (including Dwight and I) knew that he was so close to walking. Our friends at church shared in our joy and there weren't many dry eyes that morning.

I hope I never forget this dream.

Sunday, August 15, 2010

Just a quick update .... I slept well last night. Today I'm a little tired still, but otherwise feel well.

Saturday, August 14, 2010

Maintenance Treatment #1

I went in for my first maintenance treatment yesterday morning. The treatment went well and we were able to do just a small dose of Benadryl. Benadryl is used to reduce the allergic reaction to the medication. They also gave me steroids to prevent my autoimmune system from kicking into high gear.

I felt a slight allergic reaction -- reddening of my face and elevated temps toward the very end of the treatment, but it was nothing too bothersome. It was nice having such a small dose of Benadryl because I wasn't just knocked out.

When I came home I did take more Benadryl to prevent any further reactions and I took a short nap. I felt really droggy, but I wasn't necessarily sleepy.

As predicted by the doctor, the steroids then kept me awake all night. I'm so tired, but I can't sleep ... and haven't slept since around 6 yesterday evening. A large dose of Tylenol took care of the headache, and there was no nausea, so it wasn't too bad. Besides, I managed to write out (in excessive detail) our current budget versus my new proposed budget. I even assigned all the money out for the next year. It's sad to say that cause it's extremely true. We really are blessed to be able to keep our heads above water, but I sure look forward to the day when we don't have quite so many expenses. I know we have some pretty major expenses that we won't be able to avoid in the future ... like a wheelchair accessible van, but I'm just going to have to put that out of my mind for now. I just can't believe how crazy expensive they are!

Anyway ... The really great thing about treatments yesterday was it gave me the time to call one of my really good friends from high school. It was her birthday yesterday and I try to call her every year. I usually just get to leave her a voice mail, but she happened to be available to talk. It was so nice to hear her voice. I have tried to express to her many times how much I appreciate her friendship, but I'm not sure she ever really gets it. It's a little tough sometimes to know. She doesn't keep in touch at all. It's always me that makes the effort to reach her. I suspect she's really like that with everyone, but maybe I just want to believe that so that my feelings won't be hurt. :) Either way, I'll continue to call her each year because I do believe she's a really good person and I wish her the very best.

Oh, one more thing before I go, Ryan is doing much better now. Thanks to all those who have asked and called to check on him. I'm not sure why he was having such a hard time with eating and with seizures last Sunday through Wednesday, but things have started to settle back down again.

I'm off now to get the kids ready for the day. The older 2 boys have a Merit Badge Workshop today. They're pretty excited to get back to it after a 2 month break. I think we'll schedule Scouts into their weekly school routine. There are so many really cool merit badges to do. I'll just need to figure out how to find Merit Badge Counselors for each of them. :)

Thursday, August 12, 2010

Thank You

Today while I was at the Oncologist's office, I was surprised by someone's generosity. I don't know who did it. Whoever you are, THANK YOU! It was such a kind, thoughtful thing for you to do and such a sweet surprise for me. Thank you!

Sunday, August 8, 2010

Birthday Celebrations

What do you serve a 42 year old who doesn't love cake and a 2 year old who can't eat cake? Well, a ding dong "cake" with Charms Blow Pops, of course. (The kids tried to talk us into lighting the tops of the sucker wraps like candles, but the adult in each of us thought it best not to do it.)


What did Ryan think of the cake?
Well....

Perhaps it wasn't exactly what he was expecting.


Then we introduced him to lollipops.


At first he wasn't so sure about it,
then he seemed to really enjoy it.


For about 3 seconds.
Then he was just content to be with the family.


We love and adore you, Mr. Ryan!

Thursday, July 29, 2010

Ryan is TWO!


Today is Ryan's birthday! He's 2. He is two. Two. It's hard to believe that Ryan joined our family 2 years ago. Ryan has brought so many blessings to my life.
  • Greater capacity to love than I could have imagined
  • Greater recognition of the small accomplishments
  • A feeling of joy and relief each time I see other children meeting their milestones
  • A child that is always willing to snuggle
  • Knowledge of the brain and it's amazing ability to adapt
  • New friends who have become like family
  • More respect and appreciation for those individuals and families who work so hard and sacrifice so much to provide outstanding medical and therapeutic care
  • Gratitude for opportunities to step outside of myself to serve others and especially for the personal relief that service gives me
  • Even more love than ever before for my amazing family
  • An awareness of the effect of special needs on siblings
  • Awe for those who faith to rise above their physical challenges
  • A constant feeling of being encircled and uplifted by the most amazing friends, including some that I have never even met.
  • A more sure knowledge of my heavenly father's love, the power of prayer, and the strengthening power of the Atonement
I'm sure this isn't a complete list. I am so thankful that Ryan chose to join our family. I'm thankful that Heavenly Father would trust his sweet, kind spirit to our home. I'm thankful for the strength and guidance that we have received in caring for Ryan.

Most of all I'm thankful for Ryan's touch, and for the sounds that he makes, and for the way he snuggles his face next to my chest when he's tired. I hope some day he will read this list and know that I have loved him from the first time that I met him and that I am so grateful!

New AFO's

After our 3 doctor appointments, we went by the Orthotics Shop to get Ryan's new orthotics made. It was really a quick procedure. They are going to use Batman for his new boots. I suspect we'll get them within the next week or so.

Orthopedic Surgeon

As our 3rd appointment today, we also saw an Orthopedic Surgeon, Dr. Warman. (Jessica's scoliosis was treated by Dr. Warman.) I imagine that some families would think he's quite cold, but I really like him. I think he's funny.

A lot of children with issues like Ryan's need surgery on their hips. So, Dr. Warman examined Ryan and then took x-rays of his hips. I was very thankful to hear that "for now" Ryan doesn't need surgery. Whew!

We'll go back in 6 months for a follow up visit. In the meantime, Dr. Warman prescribed a new pair of AFO's with a slight modification and said to encourage Ryan to lay in "frog position" as often as he will. Apparently, that will help keep his hips & legs loose. He said to definitely NOT swaddle his legs straight down.

Yeah, no hip surgery!

GI Specialist Visit

After our appointment with the ENT today, we visited with the GI Specialist's Nurse Practitioner and Dietitian. They were thrilled with Ryan's growth. HE'S ON THE CHARTS!

He now weighs 24 pounds and 1 ounce, and he is 32 1/4 inches tall. (Here's a crazy thought: He's more than half my height at 2, and they've been so worried about his growth.)

We will continue giving Ryan Neocate One Plus via his G-tube. We are currently doing 35 mls per hour. We were supposed to be working up to 40, but I just couldn't get him over 36 for more than 2 hours at a time. They said since he is "obviously" doing well, there's no need to stress over it. Just try again in a couple of months to increase it up to 40.

The best part of the appointment is that they have now given us the green light to introduce vegetables and grains into his diet. They recommended avoiding bananas and rice due to the on-going constipation, but said we could do oatmeal and veggies. I'm very excited about that. It'll be fun to let him taste so many new things.

ENT Specialist Visit

Due to Ryan's frequent ear infections, we went back in to see Dr. Moe, our ENT Specialist. I really like Dr. Moe. He's a happy man. I like happy people.

Dr. Moe looked in both ears. The right ear was difficult to view due to so much junk. So, he cleaned it out using the help of a microscope. It was very gentle and obviously much less bothersome than having it "washed" out.

Once Dr Moe could view the ear, he saw that the left ear was clear and the right ear had no infection but he could still see the "yellow fluid behind the ear." This means the antibiotics we have been giving for the past week are working.

Dr Moe recommended that we put tubes in Ryan's ears to help with the drainage. This is normally a very easy procedure done with mask sedation in an outpatient surgical center. However, due to Ryan's health challenges, we are going to be doing it at our local hospital. And, since we are going to be at the hospital they are also going to do a hearing test. The addition of the hearing test will extend the procedure to over an hour and will require anesthesia.

Are you curious how they do a hearing test on a child that is under anesthesia? I was. I was curious how they do an accurate hearing test on any young child, especially a non-verbal, non-mobile, cortically blind child. Well ... they use a series of clicks and monitor the brain's response to the clicks. Cool, right? Isn't it amazing the technology that exists? Isn't it amazing that our body's were designed in a way that allows them to do EEG's, etc?

Anyway ... we schedule the surgery and test for late August. I'll keep you posted.

Tuesday, July 27, 2010

TTT

I just found this wonderful quote on a friend of a friend's wall:

Put up in a place where it's easy to see
the cryptic admonishment TTT.
Whenever you think how slowly you climb,
It's well to remember that
Things Take Time.
David frequently helps me with Ryan's bath. Today after we had finished Ryan's bath time, I went to take care of some thing for one of the other kids. When I came back, this is what I found:

Looks like a good brother-to-brother chat, doesn't it?

Monday, July 26, 2010

Developmental Pediatrician Visit

Ryan and I met with his Developmental Pediatrician today. We have been seeing him about every 3 months since Ryan was born. At first, I really saw no reason for these visits. It just seemed like they were documenting his progress, but I could do that.

We normally meet with the Nurse Practitioner, but today we met with Dr. Fierro. It was wonderful! He spent a lot of time with us. He was encouraged by Ryan's progress and had a few suggestions for us.

First, he discussed the need to set limits and expectations even for Special Needs children. I think we're already doing in this in the small way that we need to do it.

He then suggested that we start focusing on teaching cause and effect. The therapists have also been giving suggestions recently on how to do this. Most children start learning cause and effect when they drop something on the floor and Mom (or Dad) return it to them. They quickly learn that if they drop something, someone will pick it up for them. A lot of cause and effect is also taught visually. This makes it a little tougher to teach a child who has visual impairments and extremely limited use of his arms. I need to get busy and make the wheelchair tray for this. (I'll put pictures up and explain the concept more as soon as I finish it.)

Dr Fierro thinks Ryan will be a good candidate to communicate via computer as he gets older. He explained that teaching cause and effect is the first step in preparing him to be able to use adaptive communication devices.

We also discussed the current therapies Ryan is doing and recommended that we start looking into future options. Currently Ryan receives therapy from a group that works with 0-3 year olds. Thus, next year we will need to establish a whole new team of therapists. He gave me a couple of recommendations of therapy groups. Apparently, I need to visit with each of them and get Ryan on their waiting lists.

Let's see ... oh, we also discussed that we need to allow Ryan a lot of time out of his AFO's and primarily use his AFO's (foot braces) only when we're working on weight bearing exercises. He encouraged us to be sure not to use him when he's trying to sit, crawl or roll. Good to know. He also would like a slight modification to the new AFO's. He wants to put in a tarsal plate, which is kind of like a little speed bump that will prevent Ryan from curling his toes under.

And, he also reinforced the need to really stay on top of keeping Ryan's seizures under control. He likened seizures to a computer powering down and back up. "Each time you power a computer down and back up, you risk it not coming back up."

Dr Fierro was very complementary of our family and the stimulating environment we provide for Ryan. He said Ryan is thriving because we are taking such good care of him physically and also providing lots of opportunities for him to grow and develop. It was nice to hear such kind words.

I'm thankful we were able to meet with Dr. Fierro today. It was a pleasure.

Friday, July 16, 2010

Ryan's therapy appointment today went great! We worked a lot on sitting and rolling. We also worked on stretching out his left arm, which has become really stiff again. One of the most exciting parts of therapy today happened when Ryan had rolled (with a little help) onto his tummy. He brought up one leg and pushed himself forward on the blanket. So Miss Erika (our Physical Therapist) helped him. He really enjoyed scooting. It's so fun to see him engage his muscles and help himself move. I feel really encouraged today that he will be able to sit, roll, and even scoot before much longer.

It was also really fun to watch him interact with Erika. He loves her so much! Erika has been such a blessing in our lives. Unfortunately today she shared some bad news. She's leaving in September.

It's really hard to have these amazing people come into our lives and then leave. Not only will it be a loss because she's very talented at getting Ryan to do stuff, but we will simply miss seeing her each week and enjoying her kind spirit. We do wish her and her husband the very best and hope she will keep in touch with us!

Tuesday, July 13, 2010

Metabolic Geneticist Follow Up

Today is our follow up with the Metabolic Geneticist. I'm not anticipating any news since we've already received all the results from the last round of testing. I am curious to see if he feels there are any additional tests to run. I'm hoping Ryan doesn't need any blood work.

I'll keep you posted.

Thursday, July 8, 2010