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!

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.

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)!

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?

Another good quote...

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

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!

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!

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!

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.

Too funny...

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

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!

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. ;)

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 café 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?

Every lit bit helps, right?
{sigh}

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!