Ryan

Ryan did a great job!

Doesn't he look so strong!

Ryan's TV Debut

Today's therapy session was recorded by a camera man for WOAI for SA Living. He'll be making his first TV debut tomorrow sometime between 10-11 am. It'll just be a brief appearance during a segment that will be covering the proposed cuts to Early Childhood Intervention (ECI) funding.

Hopefully, I'll be able to get a copy that I can post here for all of you that live outside our area. :)

Heart Wrenching

Today has been an interesting day here at Disney World. We had planned to start our day early at Epcot and then at 12.15 we were to check in for the AquaSeas Tour. We had scheduled it this way because they had been predicted storms during the day.

Well at 12.15, we went to check in and found out that "due to technical difficulties" the tour had been canceled. They aren't sure if they will be doing it all this week, but will call if they are able to do it later. We were disappointed, but Jessica and David are really good at making the best of everything.

So we just continued hanging out at Epcot for the day. Sometime around 6 this evening, it started to rain, but by 7 pm it was pouring and I do mean pouring! My goofy children *loved* it! I stood in a red telly booth in the United Kingdom watching them play a Kim Possible Adventure.

I called home to say Hi. Dwight was holding Ryan on his lap and so Ryan could hear my voice on the phone. He started calling me, "Maaaa." Over and over again. Dwight put me on speaker phone and Ryan and I talked for a few minutes. I then realized that I probably needed to get the other 2 kids out of the lightning storm that had started. So, I told Ryan that I loved him and I would talk with him later. As Dwight was saying good bye to me, Ryan let out the most heart-wrenching, sad, sad cry that I have ever heard from him. It was horrible.

I sobbed for 20 minutes wondering if I had made a huge mistake. Had I been selfish in bringing the kids? Should I have sent Dwight with the kids? He's used to Dwight being gone? What if he thinks I'm not coming home?

I finally pulled myself back together and realized that it's totally normal for him to be sad that I'm gone. I'm thankful that he's aware of things and that he's able to communicate his feelings so well.

Lost.

We drove around today for about 2 hours looking for the local Mormon church. The address that we had online didn't seem to take us anywhere. When we followed the GPS to the address, it took us to a parking lot that was a Liquor store. Hmm... definitely not LDS. haha...

We finally found another Mormon church building using my GPS, but the last service had started at 11 am and it was after 2 pm. Well, at least we tried. It was a beautiful day to drive around and to see things. It was fun to just visit with the kids too. We took some fun pictures today. I'll post them when we get home. We didn't bring a connector thing with us.

Tomorrow's our first day at Disney World. David and I have it planned out. It would make you spontaneous people really uncomfortable. We haven't really included Jessica in all of the planning. She's more of the spontaneous type. We'll just let her think it's happening spontaneously and she'll be happy. :) But David and I will be much more content with a plan. We've read books. Big books. Several books. Studied touring plans. Talked to people. We have ideas. It'll be interesting to see how the ideas match reality.

So tomorrow is Animal Kingdom. David wants to get an early start. So I'm going to bed early tonight so that I can get some rest. We walked A LOT last night. We covered all of Downtown Disney. We were all exhausted by the time we got back to the hotel, but we had a great time!

The Plane Ride

Oh, I almost forgot to tell you about Lilly Belle, her sister, and her Mama.

I get that it can be rough to travel with little kids. I've done it a few times myself. So I thought I might offer a few suggestions.

1) Don't feed your child and yourself chocolate covered chocolate donuts and then expect your child to sit quietly for 3 hours. That's not fair.

2) If you say you're going to turn off the movie if they screech at super high pitched levels, then do it! Don't just keep lying to your child. Or, buy the rest of the plane ear plugs.

3) Wipe your child's nose on a tissue. My sweater, no matter how soft and furry it may look, is really NOT a tissue for your child's runny nose. The first time was cute. The 2nd & 3rd time ... well, it became gross. Please, take the offered tissues.

Obviously, my suggestions might not work for everyone. They are just my suggestions.... :) I'm sure glad it's just one flight... and it's a good thing that Lilly Belle had beautiful eyes ... and my sweater is washable.

We Made It!

Well, we are finally in Orlando. Dwight dropped us off at the airport this morning nice and early, but not too early. Did I mention that Jessica is with us? It was a tough decision, but after the last 2 years and all of her help I decided she needed a break. I hope it was the right decision.

Anyway ...

We are staying at a beautiful Marriott resort near the parks in a sweet 2-bedroom suite. Since David is the star of this vacation, I gave him the choice of the rooms. He choose the master bedroom with its beautiful master bath and king size bed, huge flat screen tv and desk. He's loving it! I offered to share the 2nd bedroom with Jessica but she's opted to take the family room, which has a nice pull out bed. Since it has other chairs, I suspect it will just stay a bed all week. I think everyone loves that we all have our own rooms, tv, and privacy.

We have a full kitchen: full-size refrigerator, microwave, and oven. I know Dwight would cook if he were here. But we stocked the refrigerator and cabinets with ramen, Lean Cuisines, sandwich meats, soda, water, and some other good munchies. Who wants to cook while on vacation? I don't even like cooking when I'm not on vacation. haha...

Anyway ... thanks Dwight for sharing all your loyalty points with us and hooking us up with such a beautiful place! Yes, it's definitely your turn next. ;)

We are off to Downtown Disney. Ya'll have a good weekend!

Disney World ... We're Coming...

Several years ago, it seemed like our kids were always getting a bunch of money for the holidays and for their birthdays, but they NEVER saved a dime. As a way to motivate them to save some money, we wrote out a family budget for a week long fantastic trip to Walt Disney World. Each kid had an amount to save.

We even came up with a "Help Wanted" board where I would post jobs that I was willing to pay to have done. We don't pay our kids for the standard chores ... cleaning their rooms, the kitchen and their bathrooms is part of being a member of our family. But, doing Mom's neurotic cleaning list ... like the baseboards, wiping the window sills, cleaning behind the toilet seats, vacuuming the edges of the room ... well, those things are paid jobs. When they finished a job, they could get their time stamp (a Mickey Mouse of course) which was worth a set amount of money. At the end of the week, each kid turned in their time card & I settled up with each of them. They paid their tithing, put money in the savings and kept what they wanted for spending.

As you can imagine with 6 kids we have some that are savers and some that are spenders. Our oldest is definitely a saver. Once she got the idea of Walt Disney World, she really became focused and soon she had her money saved. The others weren't even close! Dwight and I decided that she shouldn't have to wait for the others. So in 2008 Dwight and Jessica made the first trip to Disney World. It was reported to be fabulous!

Jessica motivated her brother David to start saving his money and he finally did it! So, tomorrow morning David and I will be making our first trip to Walt Disney World. We're super excited. David calls it "geek-ing out." Hmmm.... I wonder if you ever become too old to geek out? :)

Yay, Ryan!

Tonight I walked downstairs to see Ryan holding his own bottle. Nelda has been working with him a lot on opening his hands and apparently it is working! She propped his elbows up to support them and he held his own bottle the entire time. It was so sweet! I'm so proud of him and so appreciative of all that Nelda does to help us. She really goes above and beyond the duties of a nurse. I feel so blessed to have her in our home!

Seriously. Today I was clipping my 12 year old son's toe nails. Yes, I agree. It is something he should be able to do for himself. The problem is that he doesn't do it. Then he reminds me of the bag lady with the long, straggly fingernails that followed me through Central Park when I was 18. Creepy. Anyway ... While I was doing that, I noticed that he has HUGE toes. Just thought I'd share. Weird, huh?

No!

Saturday night Dwight was scheduled to arrive home late. 10.30. Ryan and I had talked about Daddy get home. All day we had talked about it. Ryan was really missing Daddy. Around 9 pm I tucked Ryan into bed, swaddled in his fleece blanket and gave him a kiss. I said, "Daddy will give you kisses when he gets home. You go to sleep till then." That's when he did it. Ryan shook his head No. Over and over and over. Very clearly telling me, "No." No vocal sounds, but most definitely telling me No.

So, I kissed him (with a huge smile of course), pleased to see him communicating and so obviously understanding. I turned on his music and started to shut his door as I left the room, like I do every other night. He squawked at me to let me know that he did not want his door left. I went back over and repeated basically the same conversation, and the same actions, until I finally realized: He wanted his door left open.

An hour and half later when Daddy arrived home, Ryan was lying awake waiting for him. As soon as the door opened, Ryan called out to Daddy with his own vocal sounds that mean Daddy. Of course, Daddy rushed right to his side to give him the promised kisses.

I'm so thankful that Daddy is so responsive to Ryan and understands Ryan's language so well. It was so sweet to listen through the monitor to the two of them communicating in a way that only a boy and his Daddy can talk.

I thought you might enjoy seeing a picture of this morning's scene at our house. Ryan's nurse, Nelda, had Ryan in his stander. She was opening and closing his hands while he watches Baby Einstein, which is good vision therapy for him. Deborah had covered him up with her blanket and then climbed up in his wheelchair to watch the show with him.

The other day she got in his wheelchair and wanted me to put a blindfold on her, let her touch his toys, and take her for a walk in his wheelchair. She "wanted to see what it's like to be blind and to be Ryan." So Deborah's been participating in a lot of stuff with Ryan. She's such a great big sister!

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!