Test Results for Ryan

I spoke with the nurse at Ryan's metabolic geneticist. She sent me his test results for his last set of blood work. You might remember that they tested him for several things including thyroid, amino acid levels, protein or zinc deficiency, etc. Well, several of the numbers came back out of range and they were unable to test the zinc specimen.

Ryan is really difficult to collect blood from. Like me, he is a difficult stick. His veins are extremely deep, tiny, and they roll. Additionally, his veins clot quickly. So, once they do get a vein, it frequently clots before they finish collecting all they need from him. That probably explains the zinc specimen being unusable.

As for the other numbers, well, they could be off for several reasons: stress, viral illness, diet, or real disease. So, to rule out the possibility that it was just a fluke that they are low, we are going to wait a week, and then retest. We will then compare the 2 tests to see which numbers, if any, are still low.

Honestly, I do not know what it means if any of them are still low. We tested for these particular things due to things like Ryan's developmental delays, seizures, hair growth patterns, and icy cold feet. So, it seems possible that some of these numbers may be accurately reflecting something going on with Ryan.

There is a part of me that wants to think that if it's just a zinc deficiency or a lack of enough proteins or a low thyroid, then surely we can just supplement his diet and "fix" the problem. But, there's the wiser side of me that feels the need to be cautious, prayerful, and to wait for more information. Besides, if we "fix" everything and Ryan takes off walking, who's going to snuggle with me for a long mid-afternoon nap? ;)

Of course, you know I'm just kidding about that, right? Cause if Ryan really decides he wants to walk ... or if God decides He wants Ryan to walk ... I'm pretty sure I'd be okay skipping a nap or two. =D

For my sister

My sister, Joyce, has been wanting to see pictures of my hair. I don't frequently take pictures of myself and it seems my kids typically take out of focus pictures. But, I think you can get a glimpse of the cute hair style that my friend Michelle did for me. It's been really fun having short hair again. It's funny: I feel more like me than I do with long hair. I imagine that sounds a little odd.

Anyway ... this is what it looked like when I first got it cut. I don't know if you can tell from the picture, but she also colored it. It's a reddish brown. Great color for me. One of my favorite.


And, this is about 6 or 7 weeks later...


Okay, so remember I said, we're not photographers, right? I wasn't kidding. Sorry about the glare of the light. I was actually on my way out to get my hair cut and I wanted you to see how cute the curls were. I'm not entirely sure that once Michelle cuts them off that they will ever be there again.


You know how Jason's hair curls up in the back, mine does too. That's what this picture is supposed to show, you but instead it seems to show you that our tree wasn't really perfectly straight either. (Oh, well.... The tree looked really beautiful!)


Well, none of these pictures really do justice to the curls, but better than nothing, right? Just after I took these pictures I went over and had my hair cut. It always takes me a few days to adjust to hair cuts. So maybe I'll try some more pictures in a few days.

Dancing with the Homeless

Today a noticed a link on a friend's Facebook status that was titled "Single Dad Laughing." It caught my eye because I know and love Cindy's sons. Love as in respect. Dwight and I taught two of them in Sunday School and they are just the kind of young men, that we hope our young men will be. I was hoping that something hadn't happened that cause them to now be single dads.

Instead, with just a little more reading, I found what I think might be one of my favorite blog posts yet. I don't say that lightly. It combines some of my favorite elements. Real life. Gratitude. Charity. Perspective. Friendship. Light. Truth. Pictures.

I hope you'll take a minute to read it, and to watch the video. I frequently skip videos, but I was really glad I watched this one. Click here & Enjoy!

Let me know what you think. Did you enjoy it? Would you dance with the homeless? Would you dance on camera? Hmmmm.... I like to dance. But, I'm not sure I'd intentionally make a video to post on the internet. Would you?

PS Just one more thing ... This is the only post I have read on the above blog. So, I can't speak to any of the other views expressed by the Single Dad. Just the one above post.

A Great Day

Don't you love it when you have a great day? Today was one of *those* days. You know the type of day that you wish you could have every day. It wasn't a perfect day, but it was productive, fun, a good Mommy day, a good wife day, a good friend day, and good things happened today. Like ...

• David taught me about George Washington today ... finally. ;)
• Even after a long night with Ryan, I still woke up on schedule and did my morning routine.
• I lost a little more weight and had a good workout.
• I ate healthy today.
• My dentist called (not his assistant, but the dentist himself) to see how I was feeling post root canal.
• I made it through school routines with all 3 kids at home today.
• I worked my way through part of my to-do list.
• I've started working on one of my goals. I made a major decision and set up a plan. (More details to follow later.)
• I had a fun, unexpected conversation with a good friend and that really brightened my day.
• I had good conversations with my Mom, Dad, Sister and Husband today.
• And, I scheduled a hair cut for tomorrow.
  

That's not all but that's it for tonight's list. I feel so blessed. I need to run downstairs now though. Mr Ryan is having a tough time with something and has been calling out in distress for a while and seems to need some reassurance from me. I better go see what I can do for him. I sure hope he's able to get some sleep tonight. Okay, truth be told, I really hope I'm able to get some sleep tonight. :)

Hello 2011

It's early in this brand new year. I mean really early. 12.51 am. And I have decided to actually do the whole resolution thing. This year my resolution is to write new year resolutions.

So, here's my question: What would your resolutions be if you KNEW you would NOT fail?

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.

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!

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...