Long Night

Ryan had therapy at 9 am yesterday, which required waking him early.  Unfortunately that seemed to set off seizures.  In the past 24 hours, Ryan has had approximately 29 seizures, including some where he stopped breathing for 3-5 seconds.  Obviously, I'm waiting to hear back from the Neurologist now.

Today is also the two week marker for the blood work that our Metabolic Geneticist ordered.  I don't know if the test results will be back yet, but I'll certainly call later today to find out.  His office is always great about calling me as soon as they get results, but I think I'll still call this afternoon just in case they're busy.

I also need to schedule a swallow study for him since he's no longer eating by mouth and schedule an appointment with a audiologist for testing since he has almost entirely stopped using his voice.  We want to make sure there isn't a medical reason for either of those issues before we start looking for therapeutic ways to fix them.

And, somewhere in the mix of everything today, we have a lot to get done in school, so I better get off the computer and get the kids moving for the day.  :)  I hope you all have a great day!

Natural Bridge Caverns with Aunt Joyce

 Today we went with Aunt Joyce to the Natural Bridge Caverns in Texas.  It was a lot of fun.  Ryan and I were unable to go in the Caverns, but we hung out and just enjoyed the beautiful Texas weather.  It was a gorgeous day!

 One of my favorite places in Texas is actually right next to the Caverns.  It's the Natural Bridge Wildlife Ranch.  I love it!  We didn't get to go to the Wildlife Ranch this time, but if you're ever in this area you should check it out.

Dentist Visit

If you've followed us for awhile, you probably already know that we LOVE our dentists and their staff at The Dentists for Kids!  Today was another great visit. 

When we were on our way over to the office the kids were talking about how much they were looking forward to their visit.  Deborah was listening to the boys talk about it, and then said, "Well, we all know I'm the favorite!"  Geesh, that girl!

Ryan's Switch & Button

 Okay, so these aren't the best pictures but I thought you might enjoy seeing what Ryan's "switch" and his "Yes" button looks like. 

The blue thing laying on the towel across his tummy is his finger switch.  With just a tiny bit of movement from his hand, he can trigger a response. 

In the top picture it is hooked up to the big yellow button.  The yellow button is then programmed to say "Yes."  It can be recorded to say anything.  (When Daddy was traveling a lot to Boston, Daddy left a message on it to say, "I love you, Ryan.")  We usually place the finger switch  on one side and the button on the other side.  This gives him the option of using either the finger switch or the button.

Since Ryan lost most of his words and his ability to sign, it's been really helpful to have the switch as a form of communication.  He still enjoys having the ability to make choices.

I'm thankful for modern technology and the people who invent nifty little devices like this. I'm thankful for people who realize that even kids like Ryan want to communicate and need ways to tell the rest of the world all that is going on inside of their brains.

I took Ryan to have his blood work done yesterday.  I'm not sure who I felt the most sorry for:  Ryan or the two people who were trying to get the blood.  It took 4 sticks, and a lot of digging.  Not fun.  Ryan was quite brave about it.

Thankfully, they were finally able to get all of the blood they needed for the tests.  The results should be back in about 2-3 weeks. 

On a brighter note, the school introduced Ryan and us to a "switch" that just requires a very light touch.  If he barely touches it, it activates a button device that then says "Yes."  Thus, Ryan can make choices.

Last night we got home around 5:30 and I was sure that Ryan was tired.  I was tired and he had been poked 4 times.  He must have been tired.  So he was lieing in his bed and I had hooked him up to his feeding pump.  Unfortunately, the feeding pump would NOT work.  I went through all the standard troubleshooting that normally makes it work, but nothing would make it work.  Eventually, I had to call the technician. 

While we were waiting for him to arrive, I put Ryan's switch next to him and said, "Do you want to snuggle with Mommy?"  He didn't respond.  "Do you want to get up?"  No response.  "Do you want to watch Sesame Street?"  He said "Yes" with the switch.  I thought, "Oh that must have been a delayed response." 

So, I started over.  "Do you want to snuggle with Mommy?"  No response.  So, I repositioned his hand on the switch and showed him where the switch was at and also the big button.  I said, "Ryan, you can use the switch to say Yes or you can push the button."  And, then I asked again, "Do you want to snuggle with Mommy?"  Still no response.  I again showed him where the switch was at.  Wow, he must be really tired, I thought.  "Do you want to get up?"  No response.  "Do you want to watch Sesame Street?"  He quickly said, "Yes" with the switch and then hit the button about 5 times.  "Yes, Yes, Yes, Yes, Yes."

Could it have been any more clear?  So, he watched Sesame Street.  I guess I wanted to snuggle, and he wanted to watch Sesame Street.  Hmmm....

My Cancer Update

It's MD Anderson time.  I've been in Houston for the past several days and things have gone well.  I love the talented folks here at MDA.  I love the fact that every worker is so friendly and nice.  They all seem to like their jobs.  I especially love that they always get me on the first stick.   Whew!

All the tests went well and the results are good.  I'm still in remission.  Whewhoo! 

I was hoping to be moved to an annual checkup schedule, but unfortunately that was a definite no.  I have a few new spots that will need to be followed, but nothing major.  Just tiny spots.  I'll need to stay on the 6-month schedule.  But, at least I'm still in remission.  :)

Clay in His Hands

Jenny Jordan Frogley wrote a beautiful song, "Clay in His Hands", which was inspired by an article in the New Era magazine in December of 1999. The article was titled, "In the Potter's Hands" and was written by Larry A. Hiller.  I was listening to this beautiful song performed by Jessie Clark.

I won't quote you all the words, but the chorus says:

We are clay in His hands
Centered on the wheel
As the wheel spins the potter molds
Creating something beautiful.

Can you picture it?  A master artist sitting at His wheel spinning a beautiful work of art?  I remember once watching someone create a beautiful vase.  They started with a brick of clay.  After wetting it some, they formed a ball and sat it on the center of their wheel.  In what seemed like no time, and with seemingly no effort, with just the use of their hands, they shaped a beautiful curvaceous vase.

It's really a beautiful analogy isn't it?

Well, on this particular day, in my mind, I felt that as I watched the Master spinning my particular vase the walls had become so weak that the vase was crumbling.  In my mind's eye I could really see the vase folding in on itself and finally the Master just putting the clay back into the shape of a ball and saying, "Let's start over."

Do you think that's how it works?  At first I thought, what an awful image to have during such a beautiful song.  A song that is meant to inspire and I was having an image like that?  But, isn't that what the Atonement really is ... the starting over? 

I was feeling weak from months of struggling, a tough doctor's appointment with Ryan, feelings of being overwhelmed with every day tasks, and the dread of the upcoming tests at MD Anderson. 

I think too often we think of the Atonement as something we use when we do something wrong.  But, it's also something to be used on a daily basis to strengthen us, to succor us, to help us to be better than we could be on our own.  After all, He experienced all things so that He would know how to succor us in our time of need.  Why not let Him help us?

This morning I was thrilled to find this beautiful video on YouTube to share with you so that you can enjoy the beauty of the words of the song and the creator of the video did a beautiful job on the images as well.  I hope you'll take a few minutes to watch the video and enjoy it's message.

Medical Update on Ryan

Today Ryan and I went to see his Genetic Metabolic Specialist in Austin.  I really appreciate this doctor.  He's amazing.  He's like a walking computer database, and he gives lots and lots of information, which I love.

We were there for a special visit, not just a follow up.  At the end of June, Ryan started having seizures that lasted longer than 30 seconds and where he quit breathing for 6-12 seconds every time.  He was having a couple of these each day.  One particular seizure seemed to last from start to finish for probably about 2 hours.  Since that time, he has lost a lot of his skills.  He no longer can hold his head up.  He can't prop sit. He has lost most of his signs ... probably due to the lack of mobility in his arms.  He has also lost his words:  no, mom, and up.  Additionally, he was eating 4-5 jars of stage 2 baby food by mouth during the day and only being fed by his g-tube at night.  Now, he won't eat anything by mouth.  If we get 3-4 bites in during each meal, it is because we have coaxed each of those bites.  He might drink a half ounce of a bottle, but he struggles with it.  At first, we thought the loss of skills might come back, but it's been almost 3 months and he's not regaining his skills.

Before his progress was definitely slow, but he was always making progress.  This change, the sudden increase in seizures followed by the loss of skills, means that a lot of the diseases we had taken off the list of possibilities are now back on the table.  None of them are great options.  We'll be doing testing for several direct diseases.  The orders are:

VLCFA, Lysosomals esp Krabbe re regression; TTP. PPT enzyme testing for Neuronal ceroid lipofuscinosistypes 1,2; DNA for Niemann-Pick C (type 1). Plasma and urine Cr/GAA.

Unfortunately, the lab was closed by the time they were able to get insurance authorization for all of those.  So, we'll get the work done on Monday and it will take 2-3 weeks to get the results back.  (Some of the tests have to be sent to different labs across the country.)  If all of the tests come back negative, then we will need to do an MRI to look at the mylethin sheathing and also do a muscle biopsy to consider mitochondrial disease.

He also recommended a repeat swallow study just to make sure Ryan's current refusal of food by mouth isn't for a medical reason.

So, we'll see what the tests say.  I haven't even researched any of the diseases.  It was enough that the doctor said "I'm sorry.  None of them are good options."  I guess I just don't have the energy right now to feel anxious about the possibilities.  Thus, I'll just pray and then wait until we have an actual answer.

Perhaps you'll pray too?

More art by Ryan

Ryan finger painted the hair on this self portrait. They do the funnest projects at preschool!

Preschool

As you may already know, Ryan started attending preschool this year.  One afternoon, he came home with the assignment to color a picture of himself.  Hmmm... how is he supposed to do that??  But, I put the tray on his wheelchair, put his glasses on him, put the sheet with the person outline on it in front of him, and gave him a green marker.  Much to my surprise, he held on tight to the green marker, put his head down next to his arm and very intentionally colored.  I was very surprised at how long he held on to the green marker and how much he colored the picture.

Later that night, I couldn't wait to show Dwight Ryan's coloring skills.  I'm not sure I would have ever thought to have tried coloring with Ryan.  It's made me realize there are a lot of things I ought to try.  So, below is the picture he created with a little help from Daddy.  Ryan did one of the eyebrows and so Daddy helped him with the rest of the face.  Well, you can probably figure out which lines were done by Daddy and which ones were done by Ryan.

Pretty cool, right?

LOL

David had the opportunity to perform again at LOL Comedy Club here in San Antonio.  We know there are many of you who couldn't be there who said you'd like to see it.  So, here you go ... Enjoy!

 

Lessons...

It's that time of year again when students here are returning to school. Although I home school most of the children, we too are having the same experience. This year we are off to a little bit of a bumpy start. Jessica had her first day at high school. Ryan also had his first day at school. Thankfully, both of them seemed to have had a smooth first day at school.

However, for those staying at home, most of the other children's curriculum has not even arrived yet. No, I was not late in ordering it. I'm not sure why the schools were late in sending it. This year we are mostly doing online academies for all of the children, except Deborah. Johnathon's stuff did finally arrive yesterday, but it was not everything we were expecting. In an attempt to at least finish a little bit of school, we were up till 11 pm do 3rd grade assignments. Yikes. I hope he's not too tired today cause we have A LOT of work to get done.

We have also started seminary. I love that Jessica is so willing to be up early in the morning to attend seminary. I'm so thankful that she has such a good attitude about it! This morning while she was at seminary, I was reading in the scriptures about the concern that one man had for the people of the church. The people at the time had enjoyed such great peace that they had become very wealthy ... and unfortunately, very proud. The scriptures talk about the results of this pride. It wasn't a good thing. Although there were some who continued to do righteously and were not prideful, it was a great concern to Alma and he "began to be very sorrowful..." But, here's the part that I really LOVE ... "nevertheless the Spirit of the Lord did not fail him."

Isn't that a great thought?

Yikes!

This was in our garage today:

Did you gasp?  If not, maybe I should have enlarged the picture so you could see the detail and get a real feel for just how big the spider was ... or at least how big the spider is in my head.  ;)

I'm not a fan of spiders, or any creepy crawly critters that belong outside of my personal space.  I don't mind them living outside away from me.  I just don't want them in my personal space, which if possible includes my yard when I'm out in the yard. 

So, you might be wondering what happened to this spider.  Thankfully, I have a brave son who was willing to take care of it for me.  (I don't even like to feel the squishing of the spider, and I'm confident this one had a lot to squish.)  David came out to the garage.  At first David and Johnathon suggest I just run over it with the van.  But I was concerned that the vibrations of the van movement would cause it to run away.

Then David came up with the brilliant idea of using the shovel.  At first I thought he was going to do the kind, gentle thing of just moving the spider outside.  It wasn't necessarily the option I wanted, but I didn't want to be a bad Mom.  (Would it make me a bad Mom to insist that my child crush the spider?)  And, before I could give it a second thought, WACK!  He slayed the spider!  WACK!  WACK!  By the time, David finished, there wasn't even much left to identify that there had once been a spider.

I hope no search and rescue spider teams come looking for their old friend.  One was enough.

My Sister Rocks

 This amazing box arrived in the mail to me today.  It was filled with candies from the 80's and since it had been sitting on a hot truck the box smelled like warm sugar before we even opened it.  It was delicious!

The kids and I had so much fun going through all the various candies!  When I was a young kid, I would have eaten all this candy in a day or two.  Can you imagine that??  I was  truly a candyaholic.  So, this was the perfect gift for me from my sister & her husband and my amazing nephews.  Thank you all!  We'll have lots of fun sharing it over the coming weeks!

Life Lessons

When I was in my late teens, I was confident I had all the answers. I knew exactly how I would handle every situation. And, I knew it would be the right way to handle everything.

Perhaps that’s why a summer day in Indiana is so vividly burned into my memory. I was wearing a white leather skirt with a red camp shirt. Do you remember those shirts? That was a very stylish outfit then. My sister and I were sitting in my blue Nissan in front of the mortuary where she and her husband lived. Talking. I had been quite upset with her. I thought she had made some bad decisions.

She was pregnant for the 3rd time and I thought it was the most foolish decision ever. I couldn’t understand why she would put her body through that. She had horrible pregnancies. And, more truthfully, I couldn’t understand why she would put our family through it. Afterall, everything came to a halt for the entire pregnancy. Someone else had to care for her 2 other children, clean her house, cook for her, and the scariest part of all … the doctors had told her that she might not survive another pregnancy.

I had already lost one sister. I didn’t want to lose another sister. This seemed to me to be the most selfish decision she could possibly make. I knew she loved the attention of being pregnant. The whole world stopped for her when she was pregnant … and she loved those little babies. I didn’t understand that at all. But really?? How could she risk her life for all this? It was so selfish!!

Then as we sat in the car, she explained to me the feelings that she had received through prayer. The feelings that there was still one more child for their family. I don’t remember what specifically she said to me that day, but I will never forget what she taught me. I will never forget learning about a mother’s love. I will never forget learning how much mother’s are willing to sacrifice for their children. I will never forget learning that she was willing to sacrifice her life, not because she was selfish, but because she loved a child she hadn’t even met yet.

I learned that day that only a mother can know some things. I learned that faith can help us do things that sometimes do not even make sense medically. And, I started to learn that perhaps I didn’t have all the answers.


A few years later, I learned a similar story from my father. I was a little older, but still seemed to think that I had all the answers for the particular situation our family was handling. I was frustrated by the pain my parents were feeling and wanted desperately to spare them. I was sure if they would just follow my counsel that it would stop.

On a particular day, I told my dad how I thought he should handle a particular situation. If you know my dad, you know that he typically speaks in a pretty slow, I’d say slightly southern drawl, and has a real talent for making things seem like suggestions. Never forcing his thoughts or opinions on you. I on the other hand can state things quite strongly. I’ve mellowed over the years, but am still working on developing his talent.

After telling him exactly how to fix the problem, I don’t remember his exact words, but again I’ll never forget the lesson. He simply taught me something like this: He said something to the effect of, “You know, Tina, when I die the only two people I’m going to have to report to are my mother and my Savior.” (That statement tells you a lot about how he felt about his mother. She was an amazing lady!) “I have to do what I feel like I can say to them I did everything I could.”

Many times over the years, I have thought about that lesson. I base a lot of decisions on that. Can I stand in front of my Savior and say, “I did my best.” Or “I did all that I could do.” Or, “I did all that you asked me to do.”

I know that if I live my life by that standard, I will be able to return and report feeling good about the work I have done during this earth life. I will have done all that I could do.

What lessons have you learned in your life that have blessed your life?

Flight of the Bumble Bee

Are you ready for David's latest stand-up routine? This one's short, but it's fun! He was invited to perform at Stone Oak Youth Theater's first annual Schwa Awards.

All new material. I sure enjoyed it! Hope you enjoy it, too!

Plant Experiment

Introducing Zeus Winnebago ...


Jacob decided to "plant" a sweet potato in one of my favorite glass measuring bowls and I thought you all would love to see how it's growing. This is after just less than 3 weeks of growth. It does have really pretty leaves. Doesn't it?

Haircuts

I took the Johnathon and David to get their hairs cut today. Very overdue. Especially for David.


He was enjoying his hair being longer. Me, not so much. But, he didn't give me too much grief about going to get his cut. (Thank you, David.)

Mama Bear came out while we were there.

Have I ever mentioned that I am a HUGE Mama Bear? I do not like people being rude to my children, especially when my children are being very polite.

So, we went to the barber shop that we have been taking the boys to for the past 7 years. There's a fairly new guy who obviously doesn't like kids. He's rather unkind to the kids, even when they aren't in his chair. As we arrived, our favorite guy was already doing another man's hair and had another man waiting for him. So this man told Johnathon to get in his chair. I hesitated, but the man insisted. Hmmm... this should be interesting I thought.


Since he volunteered to do it, I thought perhaps the man would be on his best behavior. But he wasn't. I eventually had to step in and remind him that someone else could finish the job if needed.

He seemed surprised by my assertiveness. I wasn't mean or rude. I simply reminded him that there was no need for him to be so unkind to my son. He had volunteered to do the job. We were perfectly willing to wait for someone else. He was quiet as he finished the rest of the hair cut. Quiet is fine. The hair cut looked nice.

He left immediately after finishing Johnathon's hair cut and told the other man not to charge us for it. I still paid. I was not looking for a free hair cut. I just wanted Johnathon to be treated respectfully. He deserves that. We all do.

By the way, the pictures were by Deborah. :) Oh, and if you're wondering ... yes, we will go back to this barber shop. Why? Because, there are still other people who work there that do a great job. And, who knows, maybe this man too will be kinder next time. We'll see.

Today I took Deborah and Johnathon to the pool to swim. Deborah is 4 years old. She normally asks me to put her "swimmies" on as soon as we get there. They are water wings or floaties, whatever you might call them, they help her to stay afloat since she hasn't learned to swim.

Last summer she had started putting her face under water but this summer she has been very reluctant to get her face wet at all.

Today as soon as she arrived she immediately got into the pool, pool sandals and all. (When I bought her last pair of sandals I called them "pool sandals" meaning that they'd be good to wear to the pool. She has decided that means they'd be good to wear in the pool.) No floaties. No swimmies. No floation devices.

Since I'd love to have her work on swimming skills, I simply reminded her that she should blow bubbles if she goes under water. Within just a few minutes, she was walking under the water and blowing bubbles.

It was fun to see her confidence soaring so high today. I can't wait to see what she does tomorrow!

One of those days.

Today has been one of those days. One of those days that I wish I could rewind and redo. Redo and have it be different.

It started last night with a visit to the ER with Deborah. Her big toe was dark red and swollen. Apparently her nail became infected, probably from her picking at her nails. She had to have it numbed, lanced, soaked, and scrubbed. As you can imagine, she was not very appreciative of any of it. I was thankful that Dwight was home to take her to the ER. It's usually me that takes kids to the doctors and to the ER's. Dwight reported that she yelled angrily and loudly at the doctors and the nurses. After some oral antibiotics, they sent her home this morning around 2 am. It looked a little better this morning at 8.

But by 10, the redness had started spreading up her leg. So we headed back to the dr where she received 2 more shots. (More yelling, kicking and screaming.)

That was the best part of my day though. It went downhill form there. And, tonight I called my Dad. I can always count on my Dad to lift my spirits. Unfortunately though he was sitting in a hospital room with my Uncle. One of my favorite Uncles. Well, all of my Uncles are my favorites. :)

He was with Uncle Edward. (Pronounced Uncle Ederd.) I was hoping that Uncle Edward would hold on till I could visit him next month. It doesn't sound like that's going to happen. I know he's anxious to go home to Heavenly Father and to see his family in Heaven. I will miss him. I love him very much.

Today has been a hard day. I wish I knew that everything is going to be okay.