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Every night Deborah prays. Every night Deborah prays that she will not have bad dreams.  AND, every night ... without fail ... Deborah prays for her friend H-y.  She has loved H-y for the past few years now.  She just thinks he is the best guy ever!  I have to agree that he is a pretty great young boy!  He's such a gentleman:  polite, cute, and really funny! 

Well, today he had a birthday party.  Starting several hours before the birthday party, Deborah started asking me how much longer till the birthday party.  She, of course, wasn't content with "a few more hours."  No, she wanted an exact count down, "4 hours and 11 minutes."  ... "3 hours and 48 minutes" ... "3 hours and 24 minutes" ... "2 hours and 56 minutes" ... Well, hopefully, you get the idea.  The countdown happened frequently. 

Oh, and picking the present was LOTS of fun!  We have a family budget for friend's birthday gifts.  It's the same for every friend and for every kid.  It's always the same, BUT if one of the children wants to spend more than that then they are welcome to spend their own money.  I think Deborah might have spent her entire piggy bank, if she had found a present that required it.

It was so fun to watch her pick the presents.  It was fun to see the process.  She has such a mind of her own.  (I have no idea how I have so many children with such independent strong spirits.  haha!)

Anyway ... then we went to the party.  It was so fun!  Then they played a game.  It was a game kind of like tag, but they would thrown this "cushion" and if the cushion hit you then you were out.  I wanted to play!  It looked like a lot of fun! Deborah was running fast and staying far from the cushion, never taking her eye off the cushion. 

Then I saw it ... fear.  She wasn't just playing a game.  She was scared of the cushion hitting her.  She was running to protect herself!  (Oh, if only you could see her face in this picture. )

Thankfully, Liam (H-y's older brother who was helping with the party & is also a such a gentleman) tagged her by getting her out on the leg.  Yay, Liam!  As soon as she was out, I went over to check on her.  She was so relieved to be out of the game.

That was it for her on the games, but boy! She had SO much fun, and she LOVED being at H-y's party!

The Weather Report

Today is going to be busy day following a crazy busy week of appointments.  I don't really have time to post, but I feel strongly that I want to share a few thoughts that have been brewing in my head.

A new friend I met recently, Susan, related feelings to a weather report.  The other day I was driving and thought, "It's cloudy with a chance of heavy rain showers."  I probably should have just acknowledged that it was already raining, but for whatever reason, I seem to have a probably admitting that the rain clouds are almost always looming lately. 

Then I heard the words to the song I had on in the car:

And with everlasting mercy will I succor thee
And with healing will I take thee 'neath my wings
Though the mountains shall depart
And the hills shall be removed
And the valleys shall be lost beneath the sea
Know my child
My kindness shall not depart from thee!

And, then the thought came to mind ... the promise ... the rainbow. 

The rain will always end.

Ryan's Hearing Tests

On October 28th, Ryan had his 2nd set of tubes put in his ears.  While still in the OR, they also did an ABR hearing test.  You might remember that Ryan had this same test done last August and that it showed 60-70% hearing loss then.  Well, this year the ABR showed his hearing loss to be 80-90%.

In light of the other skill losses, I suppose we anticipated these results.  It was still disappointing to learn that he has had such significant loss.

So today we met with an Audiologist and she made molds of Ryan's ears for hearing aides.  Within the next couple of weeks, we'll go back to the Audiologist's office to do a hearing test for an audiological exam.  I'm quite curious how they will do that with Ryan.

I thought you might enjoy seeing pictures of the molding process.  Dr. Board first put a little spongy material on a string.  She placed that into the opening of Ryan's ear.  Then she filled a syringe with some squishy green material. I wish you could feel the texture of the material.  It was a seafoam green and was very oily feeling.  Dr. Board put some in Ryan's hand before she put it in Ryan's ear.  She even let me play with some too. 

After just a moment or two it became set, and the doctor took it out.  Ryan didn't seem to mind the process at all.   This is what they looked like:

(We did have to repeat the first one, which is why you see 3 below.  Don't worry; Ryan doesn't have 3 ears.)  

You've heard the old saying: "Pick your battles."

My little Deborah loves to pick out what she's going to wear each day. I've learned not to pick that battle. So, each day I give her choices. A few choices. We usually do okay that way.

Today she picked a BEAUTIFUL red dress.  One of the most beautiful in her closet.  She even wanted me to blow dry her hair and curl it for her today.  She really wanted me to put some makeup on her too, but I had to draw the line at that one.  She is a little young for makeup.

I suspect she knew I wasn't going to do makeup.  So far, so good right?  Then I asked her to go get her socks and shoes on.  She picked her beautiful fancy white socks with the beautiful white lace.  Of course, she INSISTS on wearing them as knee highs, which means the lace is up by the knees instead of folding them over.  But, pick your battles right?

Then she comes back in my room to tell me she's ready to go to church.  I turned around to tell her thanks and to give her a kiss.  Imagine my surprise when I looked down at my beautiful daughter with her beautiful curled hair in her beautiful dress and in beautiful (knee-high) socks AND HER CONVERSE SHOES!

Yup!  You read that right.  Black & white Converse shoes.  The ones that match her brothers.  She thought they looked perfect.  There was no changing her mind.

"Pick your battles."   Right?

Notice her socks' ruffles are at her ankles.  I picked my battle and she wore her Converse today.

(And, she still looked absolutely beautiful!)

Looking gorgeous

It's rare to get a picture of Jessica. It's nice to get one of her smiling, looking confident, and just beautiful.  I love that girl!

I took this picture of Ryan today when he was on his way out to the bus.  He just looked so cute.  Something about the fact that he would NOT open his eyes just made me smile.  He likes to sleep right up till the time he hears his friends.  Of course, I think a lot of school kids would say he's got the right idea and would be jealous that he can get by with it.  :)

A new picture by Jessica

Another Hospital Visit

Ryan had another trip to the ER today.  This time by Ambulance from the school.  We stayed there for most of the day and thankfully were able to return home tonight.  He's doing fine.  His O2 & pulse rates dropped while at school. We don't really know what happened but after an hour of being on O2 and several seizures later, he picked them back up.  Hopefully, it'll be a peaceful night.  I'm thankful for a great staff at the school, an amazing nurse, a wonderful EMS team, great Drs, and my wonderful family & friends ... and of course one tough little Mann.

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?