Tuesday, November 19, 2013

TeamAbility -- Hula Mat

Today at TeamAbility they used a "Hula Mat."  It's a great device that is essential made from a typical gym and circus grade hula hoops.  They worked with Ryan on learning how to roll from side to side.  The mat helps to teach him how to roll.  You can watch the video and I think you'll understand it better than I can probably explain it.  He's done this a few times now and I can already see progress from the first time.



Thursday, October 31, 2013

Ryan's First Day at TEAMability

Today we took Ryan to the new therapy location, Team Ability. It was amazing!  Ryan's nurse and our good friend Tami came along.  (If you know Tami, you'll know she's a great photographer.  Well, today, she was a great videographer.)

We had the most amazing day! Ryan took what I'll call his "first steps." I'll apologize in advance to my other children, but these moments were better than my other children's first steps.

video

If you're only going to watch one video, this next one is the ONE to watch.  

video

What you didn't see in that amazing video is that he actually picked up his right leg all by himself and lifted it up over the box.  The box is filled with white Styrofoam peanuts, which he apparently really enjoyed touching.  He also "walked" all the way across the box and made his way to the other side.  I wasn't really sure what he was wanting when he got there.  We tried turning him around.  I tried offering him the choice between the Styrofoam peanuts and the river rocks, but he didn't really seem to want either.  We eventually turned him toward the river rocks.  He spent time hovering with one foot in the peanuts and one foot on the rocks, seemingly comparing the two.

If you're one of the people who've wondered how much Ryan thinks, let me assure you:  he was making choices today.  Not only did he obviously know where he wanted to go, but he seemed to know how to make his legs help him get there.  It was awkward motion, but he did it.  And, yes, I cried.  I've never seen my 5 year old son take a step, and today I saw him lift his leg over a box to move himself into the box.  Yes, I cried.  And, I've watched the video more than a dozen times now.

I've skipped a lot of the in between stuff, even though Tami was so awesome at taping every single moment of our hour.  Later, he made his way back to me.  At first I thought he was telling me he was all done, but then he started hugging me.  Well, I'll just let you watch this ...

video

I think he was sharing his joy with me.  What do you think?


Friday, September 27, 2013

Why Not?

Wednesday night I went shopping for fabric to make a quick quilt.  I had Johnathon and Deborah with me and since I always feel very overwhelmed at picking out colors for projects, I asked for their help.  With a bit of effort ... okay two trips and a near anxiety attack, I found these fabrics and was trying to find three other fabrics to match them:


Deborah and Johnathon were good sports and were giving their opinions.   I had been told my a neighbor who whips up quilts that I needed 3 or 5 fabrics to make a quilt.  After a few minutes, I thought I found a great match for this fabric and received confirmation from the kiddos that it did indeed work well.  However, a grandmotherly ginger shopper with glasses perched on her nose and a brightly colored quilted jacket just couldn't keep silent any longer.  Shaking her head, she said, "No.  These are not fabrics for a man."  Then she proceeded to spend the next 20 minutes explaining to me the art of fabric choices for quilting.  My head was spinning but I was really appreciative.  I really would have appreciated if she had just picked the fabric and put them in my cart.  But, no, after leaving me with advice like, "Don't forget you need texture and movement..." she left. 

I felt more knowledgeable perhaps, but still incapable of matching fabrics.  So, I picked up the two that she used as examples of movement and texture.  Luckily, they came in a "set."  I found all the colors they came in and bought them.  Here's what I  ended up with...


It's nothing fancy, but it was a fun quick project and I'm thankful I was able to do it.   I hope it's enjoyed.




Monday, September 23, 2013

Monsters

Dwight shared this on his Facebook status tonight.  I thought it was so typical of both Dwight and Deborah that I just had to keep it forever.  Here's what he said:

So the other night it was time for my youngest daughter Deborah (age 7) to go to bed, but she was taking her time.
Me: "It is almost 9 o'clock. That is when the monsters come out."
Deborah: "I'm not afraid of monsters anymore. I got rid of them all."
That's my girl...

Friday, September 6, 2013

Pinterest

Don't you just love Pinterest?  I do ... except when I don't.  I don't love that it can eat up a lot of my time unintentionally and that it doesn't always do what I want it to do.  Like right now.  I want to use it to mark this page on education and special needs so I can come back and reference it later; however, it won't since there are no pictures.  Thus, since I try to be a problem solver, you get this boring post.  Thanks, Pinterest.  ;)

Wednesday, September 4, 2013

We're In!

More than 2 years ago I put Ryan on a waiting list for TEAMability, an amazing organization that offers physical, occupational, and speech therapy for special needs kids in a really special way.  Today we finally moved from the wait list to the patient list!!  HE'S IN!!! 

This answer to a prayer came at the perfect time.  Our current provider just dropped his occupational therapy completely and wanted to cut his physical therapy to once a month because "he isn't making enough progress" and they didn't want to get a denial from our insurance.  Yet insurance just authorized 4 hours each week of physical and augmentative therapies for the next six months. 

I'm so thankful!!

Self Portraits

A little over a month ago, Ryan's awesome speech therapist introduced Lemon Glycerin Swabsticks.


They are like large, lemon flavored q-tips.  We rub one on the inside of Ryan's mouth.  We're hoping it helps strengthen Ryan's suction and swallow so that some day maybe he'll be able to eat by mouth again, or
 at least be able to taste some foods.

Since introducing this lovely lemon swabs, Ryan has discovered his fingers.  You probably already know that this is a very important milestone that most infants do some time during the first year.  Well, Ryan has never brought his fingers to his mouth before.  During the past 9 months, maybe less, he would blow raspberries on his arm, but never explore his mouth with his fingers.

Oh, but now!  We can't get his fingers out of his mouth!  And, it's not just a fingertip, or even one finger.  He typically has all four fingers completely in his mouth.  He must not have any gag reflex.

On one hand ... sorry, just couldn't resist ... it's a wonderful thing, but then on the other hand (yes, I'm still enjoying the pun) there's the excessive amounts of drool that's being created not to mention the red marks his teeth are making on his fingers.

So, you might be wondering what all of this drool and lemon glycerin swab talk has to do with the title of "Self Portraits?"  Let me tell you.

Ryan's teacher asked us to do a self portrait.  She gave us a little cut out that reminds me of a gingerbread cut out.  We've done this before each year.  You might remember his very first drawing in 2011, or you can look at it again by clicking here.

This year's self portrait was extra challenging!  I thought we'd use finger paints.  Ryan really likes finger painting; then I quickly realized the finger paints were going in the mouth with his fingers.  Not a good idea.  So, I grabbed some brushes to use, but Ryan had no interest in holding the brushes today.  Then I jokingly said, "We could paint with mustard."  So, we did ... and ketchup ... and we even tried relish.




Do you see the resemblance?

Tuesday, August 6, 2013

Jumping In

Yesterday Deborah discovered that it's more fun to jump into the water without me catching her.  So, the first thing she wanted to do today when we went to the pool was jump in with me video taping her so that she could send the video to Daddy.  She was SO excited for Daddy to see her jumping into the water!  Unfortunately, I wasn't able to send it to him while we were at the pool.  But, I told him all about it and he was SO proud of Deborah. 

This video is for Daddy ...

video

Monday, August 5, 2013

Deborah ...

Deborah just had to try it...




Aging and Parking Spots

I've been feeling a little overwhelmed lately with the limitations of my body.  Next Sunday I turn 45 and although 20 years ago I thought it would never happen to me, my body is starting to show new signs of aging.  I've had wrinkles for a few years and the grey hairs came in with a vengeance after chemo, but now I have all new creaks and pains.
 
A few weeks ago, I was doing squats--nothing new just your typical run of the mill exercise squat--using only my body weight for resistance when I noticed a pain in my mid to lower back.  It wasn't severe or shooting, but it was enough of a pain that I stopped after finishing only half of the planned squats.

Last week, I started having pain in my right shoulder and arm.  It made it very difficult to lift or even move Ryan.  And, my right hip makes a creaking noise now when I move, much like the old wood floors at my Aunt's house did when I was a child. 

To add insult to injury, I spoke to a physical therapist about all of this and she simply said:  "You're not getting any younger."

The hardest part of accepting all of this is that while I may not be getting any younger, Ryan is getting older and bigger for which I am very thankful.  Somehow I just need to figure out how to make my body stronger and stop this aging process.  I can only imagine how much more difficult it is going to become to move him in and out of the car seat, bed, and wheelchair.  I need to be able to care for Ryan long term and that requires me being able to do all of those things. It's a little overwhelming.

Saturday I was thinking about all this as I loaded the groceries in the van.  When I was returning to the van after putting away the grocery cart, a lady who was walking toward me gently smiled at me and said, "I pray there will always be a parking spot for you."  Now, I wasn't parked in handicapped parking because I didn't have Ryan with me.  However, I suppose she saw the tags on my car and maybe the wheelchair.  But, I thought a lot about what she said and how thoughtful it was for her to say it to me.  She and her husband seemed to need handicapped parking more, even if Ryan were with me.  Yet, the fact that she would pray for me to have a spot was so generous and kind.

While I feel very overwhelmed with my aging body and the need to strengthen so that I may do all that is required of me, I am grateful for the many blessings that I have and recognize that I have been blessed with so much.

Sunday, July 14, 2013

Questionable Reading Materials

Today I was having a conversation with Dwight & David about some questionable material assigned for an English class. As we discussed my opposing arguments, Johnathon said, "Would you read that if the Savior were in the room?" and then Deborah, quoting lyrics, said, "If the Savior stood beside me, would I do the things I do? Would I think of His commandments, and try harder to be true? Would I follow His example? Would I live more righteously if I could see the Savior standing nigh, watching over me?" 

Seems to be a great standard to live by ....

Saturday, July 13, 2013

Slacking?

I'm sorry if it seems to all of you I have been slacking.  I'm sure you've noticed my sparse postings over the past few months and my lack of any postings since Ryan came home from the hospital. 

This semester I thought it would be a good idea to take 8 credit hours in school.  Oh was I wrong!  With all the unexpected emergencies, Jessica graduating and getting her ready and sent off to college, and the beginning of summer, it has been tough to keep up with 8 college credit hours.  I am still managing 2 A's and struggling to pull the B back up to an A.  That B will be why I won't be doing anything fun for the next week -- except math.

I've always loved math until this class.  My family thinks it's great that now I can relate to their feelings about math classes.  Perhaps.

I promise I've been taking lots of pictures and mental notes.  As soon as I get through the end of July, I will update you all on everything that's been happening and give you lots of pictures.

Till then, send me good Math thoughts... ;)

Sunday, June 2, 2013

Sunday's Doctor Visit

Ryan had a really good night last night. He has been moved from guarded condition to stable. His oxygen saturation levels have been rising and staying really high. At 12:30 today we took Ryan off supplemental oxygen.  The real test will come when he goes to sleep.

Ryan's lung CT showed that he does have pneumonia.  It was hiding behind his heart.  The good news is there was not a lot of scar tissue!  So, the doctor has asked that we continue the meds as ordered but we can go back to every 4 hours for the IPV treatments.  YAY!

His lungs are sounding a little better.  His O2 sats are hovering right around 94-96 without any supplementation, even when he's napping. The trick will be to see whether he can keep them them overnight.  He must stay off supplemental oxygen with his saturation levels over 92% for a full 24 hours before we can home.

Saturday, June 1, 2013

Saturday Night's Update on Ryan

Ryan's O2 sats have come up a little today and we've tried weaning him a little.  We've moved him to 1 1/2 liter and he seemed to do fine.  We tried just 1 liter for a while, but he didn't seem to like that too well.  So, I suppose we'll just hover at 1 1/2 for a while.



Great Teacher

Ryan seems to be feeling better today.  One of his Respiratory Therapists, Holly, started being a little more aggressive with the IPV machine and I think it's making a difference. 

Additionally, Ryan's teacher, Mrs. V and her husband, came to the hospital to see him.  She is the best teacher ever!  We had the nicest visit with her.  I had a feeling on Friday that Ryan would really like to see her.  I'm sure I was right!
Every time she walked away from Ryan, he would call her back with this definite "Mmmm" sound.  Then she started rubbing his head, and when she'd quit, he'd wave his hand as if to say, "More!  Keep going!"  It's a good thing he's so adorable.  Otherwise, it might just seem really demanding!  :)

You know, earlier this week when I was at home with Ryan, I was really worried about him.  He was so pale white and sick.  He certainly wasn't enjoying this experience at all.  The thought occurred to me several times that Ryan might go Home this time, and that perhaps Ryan was ready to go Home.  I had lots of time to think about it as the minutes of the night passed, waiing for the next time his sats dropped too low and he needed to be repositioned.  It was a sad, and perhaps scary thought for me.  I don't think I'm ready for Ryan to leave our family, even if it's only a short time.  I felt a little overwhelmed and sad by the thought.  Okay, really saddened by the thought.

Then yesterday I went to the school to see a special activity that Deborah was doing.  As I was driving to and from the school, I listened to a talk by Mary Ellen Edmunds.  She was talking about lessons in gratitude she learned from her time in Africa.   Some of you may be familiar with the stories she told.  She was there during a time when much of the world was having a drought.  The Church of Jesus Christ of Latter Day Saints invited all of their members, worldwide, to join together in fasting for water.  This man, who did not have running water said he wished that he could send some of their water to those of us in the United States.  Isn't that amazing!  As I listened to her talk, a feeling of gratitude washed over me.  Somewhere in the world, a mom, or perhaps several moms, were losing their little ones without any preparation.  I could for a moment sense the great shock and devastation of thinking all is well and then having such horrific news.  And, in an instant, I felt such gratitude for all the moments I have.  I felt gratitude for the times when I am able to prepare myself for that eventual day when I will have to say good bye to my sweet little boy. 

I hope it will not be too soon.  I also pray that he will not linger so long on earth as to be miserable here.  My world is filled with joy and a measure of that joy comes from Ryan and all the lessons I have learned from him. Although I would be glad to serve him all the days of my life, I am truly thankful for the moments of reflection that make me appreciate each moment a little more.

Thanks for all of your prayers!

Friday, May 31, 2013

Friday's Update

No change today in Ryan's status.  He's still dropping every time his supplemental oxygen is moved down below 2 liters.  The doctor came in to visit.  He said he would have anticipated a change by now.  The 2nd set of x rays look better. He thought we should at least be able to start weaning him by now.   Additionally, the white blood cell count and the CRP was not as indicative for Pneumonia as he would have anticipated.  So, he ordered a CT Scan to see if perhaps we just have a lot of scar tissue in the lungs or something else going on in there. This may just be the unknown chronic Ryan disease or another chronic disease.  Also, apparently something happened and they need to redo the viral panel. He also increased the frequency of the IPV treatments to every 3 hours.  Ryan is not going to be thrilled about that.


Thursday, May 30, 2013

Visit from the Doctor

I spoke with the doctor today.  We reviewed the possible causes:  bacterial pneumonia, viral pneumonia, or other respiratory infection.  The chest x rays and the blood work support the early stages of pneumonia.

He said to anticipate the hospital stay will be 4-5 days.  Oh, boy. 

Ryan's May Hospital Visit

Ryan was unable to maintain his oxygen saturation levels above even 90% at home on 2 liters of oxygen; he was pale white, cold, and his lips and nail beds were greyish blue.  Not a good thing.  Wednesday afternoon, after talking with the Pulmonologist, we transferred him to a portable oxygen machine, loaded up a bunch of machines, and took him to the ER.  By the time we arrived at the ER, he had pinked up a little and was hovering right around the 92% area with oxygen.

Their was a line at the ER; however, we were moved to the front of the line.  I suppose that's one advantage to walking in to an ER with a child already on oxygen and lying across your arms:  you certainly never have to wait in an ER.

The ER doc ordered blood work, a chest x ray, and a viral panel.  Then we waited in the ER exam room for what seemed like an eternity, but in reality was only close ... we checked in sometime around 7:30 pm and was moved to our hospital room around 1: 30 am Thursday morning.  I was so tired from the two sleepless nights before that when George was asking me Ryan's history questions, I kept falling asleep.  I felt bad, but at 2:30 am on a good night I might fall asleep on you.  At 2:30 am after not sleeping much for two consecutive nights, and knowing that I now have a medical staff to watch over Ryan, I think my body was just shutting down.

Ryan was placed on the step down unit from the ICU where he can be monitored closely.  He is listed as "guarded" condition, which here is between stable and critical.  We are doing IPV treatments every 4 hours, some new meds, and of course his normal meds.  The little guys is exhausted.  He is still requiring 2 liters of oxygen just to keep his saturation levels at 92-93% and he's still have frequent dips into the 80's. 

Wednesday, May 29, 2013

An Update on Ryan

Last Friday we had a visit with a new Pulmonologist. We were referred to him when Ryan was hospitalized about a month ago. Ryan seems to have a pattern of going to the hospital every spring for respiratory issues.  We were hoping to avoid future hospital visits by doing some preventative treatments at home.  But, it wasn't to be.

Friday morning, Ryan felt just a touch warmer than usual and even looked a little flushed, even the new doctor noticed it.  However, we went to our appointment and received a great treatment plan.  We were to start doing a new medicine with an inhaler and a spacer every morning.



 (I must admit that I'm disappointed that Ryan's is just yellow.  He is lacking the adorable dog face. )

He also gave us a treatment sheet with options for when Ryan wasn't feeling good:  nebulizer treatments and steroids.  Over the weekend, Ryan was not feeling well:  low grade fever, lethargic and a little bit of a cough.

Sunday night,  his fever spiked to 104.8, but it came down with the typical treatments.  On Monday, he seemed completely well, which was a huge blessing because we had lots we had to get done that day.  Then just as I finished all that I needed it seemed to do, he started running a fever again.  By Tuesday morning, he was obviously having a lot of respiratory distress so I did as I had been instructed and called the Pulmonologist.  After describing that he had been struggling all weekend, they wanted to see him soon. 

At the doctor's office they were very worried about his low oxygen levels.  They gave him a breathing treatment and a dose of steroids.  The Dr. then made out a new more aggressive treatment plan, which included our newest toy:  an IPV machine. 


I've now started calling the IPV machine, the green beast.  In addition to it's lovely retro feel, it then has a bunch of stuff that hooks up to it.  At one end is a little mask, that goes over Ryan's nose and mouth.  It then pushes air into his lungs and nebulizes at the same time.  I have a lot to learn about this new machine. What I do know is that Ryan does not enjoy his treatment time, and it's going to be tough to do this 3 times per day when he's well.

A Respiratory Therapist brought the IPV machine to the house late Tuesday afternoon.  I had an evening nurse there that night, but Ryan was so sick by night that I didn't really want to leave him.  We got through the evening, but night time was really tough.

Ryan's oxygen levels were dipping into the low 70's.  Remember they need to be above 92 to stay off oxygen, and his baseline is 97 or higher.  All night long, I had to keep repositioning him and waking him to get his O2 levels back up.  Wednesday morning came and I turned his care over to the daytime nurse.  I had to go to a quick meeting, but while I was away I checked in on Ryan to see how he's doing. The nurse seemed to indicate that his day hadn't been normal, but it was good.

With that report, I was a bit surprised to find Ryan looking very pale and still having a lot of breathing issues.  With 2 liters of supplemental oxygen, he should be able to function at, or at least very near, 92.  I was relieved to think that the Respiratory Therapist (RT) was coming to the house.  I thought she'd definitely be able to show us all that her plants are doing.

When the RT arrived, she didn't say much about Ryan's appearance, but got busy quickly.  She tried to give an IPV treatment, but his O2 levels kept slipping down hill. She finally suggested that it was time to call Dr. Smith. When we called Dr. Smith, he said it was time to meet him at the hospital.


Monday, May 27, 2013

The Movie

video

My husband and the kids put this together about 8 years ago.

Saturday, May 18, 2013

Crazy Squirrel Lady?

My children have started calling me the "Crazy Squirrel Lady."  There's a whole history about this new title. 

This past week I had to write a personal narrative for my college class. I felt a bit stuck as I tried to figure out what to write about. I really had no idea what to write about; I just didn't want my narrative to be a traumatic story.  When I asked my family what I should write about, they all said, "The squirrel!"

So, here's the starting of the squirrel story.  We were only allowed 450 words, so you'll have to wait till another time to hear how it ends.  (I'll just tell you ... I do win!)  I hope you enjoy!


The Porch Swing

I had always wanted a porch swing.  It seems idyllic, the perfect place to read to my children on a cool day with a gentle breeze and the trees swaying back and forth rhythmically.  It was the beginning of fall, and the summer sun was starting to cool down.  The porch swing had been placed on the back deck in the perfect position.  Johnathon, Deborah and I could sit together and swing as we read book after book.  Some nights we would read until I was squinting to see the words in the last hint of sunlight. 

We had just started to love our swing when one afternoon we noticed that something had started to steal the stuffing from our cushions.  What animal could be so unkind?  I examined the wounded cushion looking for clues.  I could see that the woven fabric had been carefully pulled apart, but just enough to pull the white fluffy stuffing through the top of the cushion.  Whatever animal took my belongings left no trace, but came again the next day for more. 

On the third day, the thief returned for more stuffing.  This time he left a trail.  My eyes followed the scant white trail of cotton as it dotted across the yard and up into the two story tall elm tree.  At the very top, I was surprised to see a mansion of a nest, shaped like an egg.  It must have been at least two feet tall and eighteen inches wide.  The bandit was really living large!

I took up a constant surveillance of the porch swing, hoping to catch the critter in action.  For days, I saw nothing.  I thought perhaps the unknown thug had taken all they were going to take.  Then one day, while standing by the back porch door, a beautiful squirrel caught my eye.  He held my gaze with his deep dark eyes.  Then he quickly made his way to my porch swing and mockingly stuck his claws right into my cushions and grabbed some of my stuffing!  How dare he!  I swung open the porch door and yelled at the squirrel as he ran off my deck, “No! Don’t you take my stuffing!”

That’s when it happened. The squirrel stopped.  He put up his paws, turned and fixed his beady eyes on mine, and screeched at me with a high pitched almost-human sounding slur.  He looked like a demonic cartoon squirrel shaking his fists at me.  Without even thinking, I yelled back.  He continued to insult me as he scurried off, stopping just long enough to turn, lifting his feathery tail and mooning me, before disappearing into his well padded mansion in the trees.

Wednesday, May 8, 2013

Wrinkles

Remember last week's love letter to my laptop?  Well, this week we were asked to write an essay on something or someone that is beautiful, but not commonly considered or described as beautiful.  This is my rough draft.  Let me know what you think.

Wrinkly

"Mom, you haven’t changed at all, except now you're wrinkly,” my teenage daughter boldly claimed as she admiringly gazed at her young self in pictures.  I'm well aware of my wrinkles, I had just never thought of myself as wrinkly. Instantly, I was transported back to the side of Julia, a dear friend from my childhood.  She was an 89 year old woman, who if she stood on her tiptoes would not have been 4’6”.  Now, Julia was wrinkly!  She was so wrinkly that it looked like her skin was being magnified.  Every line was exaggerated, and the skin was paper thin.  But, oh, how I loved her wrinkles!

 Wrinkles tell a story of a life well lived.  While my daughter thinks I’m wrinkly, I don’t have half the wrinkles that Julia had and probably only half the stories to tell.  I am working on developing more each day.  I currently only have six forehead wrinkles, several tummy wrinkles, and lots of knee wrinkles.

When I was a relatively new mother, I was warned about the forehead wrinkles by my Aunt Elsie.  She didn’t like wrinkles.  She said I should be careful with the way I look at my kids when they do something wrong because it can cause wrinkles.  She was right.  The six wrinkles on my forehead represent the lessons taught to each of my children.  Each line has been dutifully earned as I have lifted my eyebrows quietly but firmly reminding a child to be reverent during Sacrament meeting.  The lines have been carved deeper while giving a testing child the tilted head, eyebrows raised, “this-is-your-last-chance” look.

The wrinkles on my forehead aren’t the only place my children have caused skin challenges. While I managed to escape six pregnancies without any stretch marks, I now have tummy wrinkles.  No one warned me this could happen!  In fact, it didn’t happen until the sixth bladder hopping child had made their way out and started to grow up. Then one day I noticed my once taut tummy had become creased, and yes, wrinkled.

More than half of my children are now bigger than me, but the once tiny children have led me to my knees many times where I have noticed that I also have many wrinkles!  I have earned these wrinkles through prayer, both in pleading with the Lord for counsel and direction, and in offering many prayers of gratitude for all the blessings and tender mercies.

Where others may see old age, saggy skin, and loss of collagen, I see a life that has been well lived.  While I may not be as wrinkly as Julia, I am thankful for my forehead, tummy, and knee wrinkles.

Tuesday, May 7, 2013

THEY SAID YES!!!!!!

THEY SAID "YES!" Thank you for your prayers! They said, "yes!" Ryan will be staying in Preschool. So, thank you for your prayers. Now, please be sure to say a prayer of thanks! Thank you all! I'm so appreciative to all of those at the school: at the administration level, at the district level, and of course the teachers and therapists who work with Ryan. I'm most appreciative of the prayers. I really believe that the prayers are what made the difference. I don't think they would have changed their minds without all of your prayers and without the divine intervention. I'm so thankful! The best *is* yet to come!

Monday, May 6, 2013

It's working!

Our prayers are having an impact! A representative from the District is coming to meet Ryan today. Please pray their hearts will be softened, their minds will be opened, and those who work with Ryan will be inspired to know the best things to say and do. We will then meet again on Thursday to get the decision as to whether he can stay in Preschool (PPCD) or if they say he has to move into Kindergarten next year. Thanks for your continued prayers!

Saturday, May 4, 2013

A Love Letter

Perhaps some of you know that last September I started taking college classes through Brigham Young University-Idaho.  Did you know that the three most common reasons that prevent people from going back to college are finances, fear of math, or fear of writing?  I fall into the latter category.  I worry that I will not be able to do all the writing assignments.

Well,  I am now taking a writing class and our first assignment was to write a love letter to an object.  Yes, you read that correctly.  We had to write the love letter to an object, not a person.

The night before I wrote my love letter I had a horrible experience with getting a virus on my laptop. Like most families today, we are not a one laptop family.  We have an impressive array of desktops, servers, and laptops that would rival any small business office's network. But, it was mine.

The combination of the assignment and the virus resulted in the following love letter.  Jessica thought you all might enjoy it also.  I hope you find it entertaining.

Dearest Laptop,

     I am sorry that I did not do a better job of protecting you from this pernicious virus. My heart ached tonight as I watched the last glimmer of light fade from your screen. You have always been so faithful to me. It was careless of me not to notice that the antivirus software was not running every night.  Now I can only hope that the rumors of fatality are not true. You must know that you cannot be replaced by just any laptop.  It is you, and only you, that I want.


     I love your camera and the way it blinks when I first turn you on each day.  I know I told you it was creepy in the beginning of our relationship, but I find it endearing now.  Tonight as I ponder how much longer I will have you, I long to see your blue light wink at me.  I love that with your camera you take me to places all over the world to find my husband.  You never seem too tired to adjust to my needs.


     Your keyboard is the only one that feels right to me.  I love the warmth that radiates from the keys as I place my hands into position to type.  The tiny bars on your F and J guide my pointer fingers to their home positions.  The memory of your keys clicking under my fingertips as I quickly glide across makes me long to have you back again.  With each stroke so quickly recorded and categorized, you bring deep relaxation to my mind and body.


     Because of you, I am able to keep in touch with all of my friends daily.  I can see every piece of their news and every pixel they post. I can hardly pull myself away from you. Like Steven Tyler of Aerosmith breathlessly sings, “I don’t want to close my eyes.  I don’t want to fall asleep…. I don’t want to miss a thing.”


     You will consume my every waking moment until I have restored you to your full vigor. I will search out the best programs for our recovery efforts and the best people to work on your firm body as I cannot part with your sleekness.  I will do all in my power to heal you of this virus. I love you, my dear laptop!


Your One and Only,

Tina

Sunday, April 28, 2013

Silence

Tonight I found this quote in my files:

"I have seen so many people mistake silence for courage, with terrible results, when the real courage would have been not to remain silent." ~Unknown

I think it is profound as I have often felt that my voice was stuck in my throat. That might surprise some of you.

Saturday, April 27, 2013

Words

This past Tuesday, my son’s nurse, Nelda, and I were on our way with Ryan, my 4 year old son to see his therapists. As we were driving on Huebner Road talking to each other, I heard a very clear “Mom” from the back of our silver minivan. It sounded like the voice of a typical 4 year old.

I swerved a bit as I whipped my head around in astonishment, my eyes catching Nelda’s eyes. The look on her face reassured me that she had also heard the same clear “Mom” and it wasn’t my imagination. It might not surprise some women to hear “Mom” while driving their minivans, and had I had any of my other five children in my car, it wouldn’t have surprised me either. However, Ryan isn’t a typical 4 year old. He has never called me “Mom” before Tuesday.

He is classified on insurance papers as “non-verbal.” Of course, anyone who has attended Sacrament meeting with Ryan would disagree with that statement! He has a beautiful dove call that he makes when he’s happy, a dolphin clicking noise that we haven’t decoded yet, a purring sound that he makes when he’s content, and he can roll his tongue with the best of the Spanish speakers in all of Texas. And, now, he can say, “Mom!”

Wednesday, April 24, 2013

Imagine

In case I didn't tell you personally, Ryan said Mom ... not Mmmmm..... or Maaaaa.... but MOM yesterday. And, not just once, he said it FOUR TIMES. Next time you hear the word, Mom, imagine that.

Tuesday, April 16, 2013

A Funny Thing Happened On The Way Home...

I received a call from the school today that Deborah was in the clinic with a tummy ache. So, like a good Mom I rushed to the school to pick her up, and being a real Mom, I was hoping that if she was going to throw up that maybe she'd go ahead and do it at the school, before I arrived.

As soon as we walked out of the school, it was questionable whether she was really sick. She was talking 1,000 words per minute almost running to the car. Then she wanted to go to Sonic for lunch. When I denied her request, she asked for White Castles. Hmmm, definitely not sounding like a tummy ache.

I questioned whether I had made the right decision to rush to the school to pick her up. Maybe I should have encouraged the school to feed her lunch and send her back to class. Then the best conversation happened.

She was asking me why we can't eat out whenever she wants. So, I explained that Daddy works hard to earn money so that he can pay our bills and we shouldn't just waste the money that Daddy works hard to earn. She thought it would be nice if Daddy could just work every day but Sunday and get lots and lots of money. I explained that I thought it would be nice if Daddy could be home every night and on weekends, AND still have all the money we need to do the things Heavenly Father wants us to do.

She said, "Yea, but it would take him a long time to get here every night." I explained that some Dads do come home every night after work, like at 5 o'clock. She said:

"Wow! They must have a faster plane than Dad's!"



I'm still laughing...

Sunday, April 14, 2013

Best Thing From Church

My favorite quote from Church today: 

"He wants nothing more than for us to return to live with Him.  
It's the happiest thing I've ever heard."
~Jacob Andrus, 18 years old

Saturday, April 13, 2013

Johnathon

Johnathon, Deborah and I visited the play center waiting room at the hospital on Saturday morning.  Johnathon had a lot of fun playing with the Wedgits. 


Annual Hospital Visit?


I thought we might make it through this spring season without what seems to be Ryan's annual hospital trip.  However, Ryan was having problems with his breathing on Thursday.  We kept him on oxygen all day Thursday and all night.  Where there hadn't been any improvement on Friday morning and he seemed to be working hard to breathe, even with supplemental oxygen, I made the decision to take him to the Emergency Room. I spoke with his primary care physician and he agreed that it was the best plan of action.  He was leaving town that afternoon and thus he made sure that I had his cell phone number so that I could reach him if I needed anything and so that I could keep him up to date.  Do you see how blessed we are?

After being in the Emergency Room for a while, we found out that he had Enterovirus and Rhinovirus.  For most of us, that's just the common cold.  Nothing serious. For Ryan, however, it can get serious.  The chest xrays showed that the lungs were surprisingly clear, but he was essentially drowning in his secretions.  Unfortunately for Ryan that meant we had to do some deep suctioning.  If you don't know what that means, imagine a vacuum cleaner with a skinny hose.  Then stick the hose down your throat or up your nose to suck all the gunk out of your body.  Not fun.

The attending physician was going to send him home since we have supplemental oxygen at home and the ability to do suction,   However, Ryan's respiration rate was so high that she was concerned that he might just tire out and so she decided she needed to admit him.  So we spent one night at Pedi and thankfully we had one of our favorite doctors there.  He had some great advice and referred us to the best two Pulmonologists in our area.  They are expecting my call and took my cell phone number so that if they don't hear from me, they can call me.  Nice, right?  Hopefully, we can find out what we need to do to strengthening Ryan's lungs.

In the meantime, I'm sure thankful for pulse ox monitors, portable oxygen machines, nurses, doctors, even suction machines ... although they are definitely not my favorite thing to use.  I'm really thankful for all the kind people on our team.  I am so thankful for all the resources that Heavenly Father provides to make this journey a little easier and more joyful.

Sunday, March 31, 2013

Anchors

As many of you know, I am taking a couple of college classes through Brigham Young University Idaho.  This past week for my Foundations of Religion Course 122, we studied the Book of Ether from the Book of Mormon.  It's one of my favorite sections of the Book of Mormon.  If you've read my blog for a while, you've heard me talk of it before.  It is the story of the Jaredites.

Each week we are required to participate in a discussion board.  This is meant to simulate the classroom discussions that we of course miss out on when doing an online classroom.  When I first started the classes, I thought the discussion boards would be rather lame.  However, I have found that they can be really wonderful.  Some people put more effort into their contributions than other people.  Of course, that's true in an actual classroom as well.

This week I asked permission from one of my classmates, Shannon Lowman, to share her post.  I hope you enjoy it as much as I did.  First, let me share with you the verse she references:

Wherefore, whoso believeth in God 
might with surety hope for a better world, 
yea, even a place at the right hand of God,
which hope cometh of faith, 
maketh an anchor to the souls of men,
which would make them sure and steadfast,
always abounding in good works,
being led to glorify God.

"A single word in Chapter 12 (verse 4) jumped out at me: "anchor".  It is such a visual word.  I live in San Diego, home to numerous shipyards.  If you've ever seen an anchor ... I mean, a real anchor .. not just a flimsy motor boat anchor, but one that can stop a ship, it is a memorable sight.  The USS Enterprise, an aircraft carrier, has two anchors, each weighing 32 tons!  But the strength and security of the ship is not just dependent on its anchor, but rather what it is anchored to!  "The anchor prevents a ship from drifting away due to the water currents or tide. A popular misconception is that the anchor itself acts as the main weight to "secure" the ship in its position. On an anchoring run, the ship would lay the anchor together with a length of its iron cables on the seabed.... it is not the weight of the anchor, but the weight of the huge iron cables connected to the anchor that "secures" the ship." (wikianswers.com)  Elder Richard G. Scott said in Conference 1993, "Anchor your life in Jesus Christ, your Redeemer.  Make your Eternal Father and His Beloved Son the most important priority in your life--more important than life itself, more important than a beloved companion or children or anyone on earth.  Make their will your central desire.  Then all that you need for happiness will come to you."  Our security comes, not from how strong we are, but from the immobility of what we are anchored to.  Elder Scott assures us that everything else will fall into place when we are properly anchored to the Rock of our Redeemer."

Thank you, Shannon, for saying it so beautifully and for letting me share it!

I hope we will all anchor our lives to Jesus Christ that we may enjoy the security and strength that will come from being anchored to the Rock of our Redeemer!  Happy Easter!

Sunday, March 24, 2013

Cough, cough

The nurse texted me on Friday morning while I was at an appointment to say:  "Mrs, Tina, no fever, pulse ox 95% or better & color is good ... normal HR, concerned about the definite wheezing & diminished breath sounds in right lung & he's tummy breathing.... changed his position & gave 4 puffs of inhaler, very little change in breath sounds."  This was unsettling since we were already on day 7 of antibiotics (Augmentin) for a respiratory and ear infection.

So, I scheduled an appointment with the Doctor and thankfully he was able to get us right for an exam.  He agreed with the nurse's assessment and sent us for chest x-rays.  The radiologist saw chest infiltrates and sent back a diagnosis of Bronchial Pneumonia.  He gave Ryan a large dose of another antibiotic, Rocephin, a prescription for Azithromycin, and suggested we use the Ventolin inhaler 3-4 puffs ever 3-4 hours and a probiotic. 

On Saturday, Ryan pretty much slept all day long.  When he'd wake up, he'd cough and then cry.  It was obvious from the cry that he was in pain. 

This morning I was woke up by an early morning phone call.  It was the doctor's office.  They wanted to know if we could bring Ryan in to see the doctor on call.  Our doctor had asked her to see Ryan this morning to check him to make sure he was getting better.  Isn't that great?  That is one of the reasons I think he's so great!  And, the good news... Ryan's lungs did sound better today.  Yeah!

We are, of course, to stay the course.  Finish the antibiotics, protect him while his immune system is especially vulnerable and watch for any signs of deterioration. 

I am SO thankful for good men and women who dedicate so much time to providing good care to families.  I know they make sacrifices.  And, I'm thankful for all the modern technologies and medicines that allow us to treat things that used to take the lives of loved ones.  Counting my blessings.

Tuesday, March 19, 2013

Tuesday, March 12, 2013

Oxygen

I'm so thankful for the ability to have a pulse ox monitor and oxygen at home.  Tonight it saved us from having to go to the hospital.   So, we'll get through the night and see the doctor tomorrow morning just to make sure there's nothing that needs to be treated.

Wednesday, February 20, 2013

Guys Today

What do you call guys today?  You know the ones that we might have called cute or handsome in my day? (That'd be the 80's, in case you're wondering.)  They're too old to call adorable and I don't think "sharp" is how I would describe them ... at least not this time.  I'm not their age so I'm pretty sure it'd be REALLY CREEPY if I called them "smokin'" or "hot."  In fact, I feel weird even typing that

I'm not sure what to call these boys. I don't want to insult these guys.  So, I'll just say they have IT.  They have what Moms liked in the guys they dated a gazillion years ago.  Good looking, great sense of humor, fun, polite, dress well, and just plain cool.... Oh, and a really important one ... really good with parents.  (That's big!)

So, Tuesday night three of these guys with IT showed up at our house and one was carrying a door.  To understand why they brought a door to our house, you have to know that the theme to the local high school prom is Titanic.  (Still not understanding why the door?  Near the end of the movie, Titanic, Jack and Rose were floating on a door.)  Long story short, one of these guys with IT asked Jessica to prom by bringing over a door.  Cool, right?


Sunday, February 3, 2013

A great quote

I saw this quote on the back of a t-shirt...

He will catch me 
when I fall,
or He will teach me
how to fly.

Isn't that great?  I love it!

 

Thursday, January 10, 2013

Animals

Ryan's class has been learning about animals at school.



Ryan did not seem to enjoy being an elephant.